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First Nations, Inuit and Aboriginal Health

An Assessment of Continuing Care Requirements in First Nations and Inuit Communities

An Examination of Continuing Care Requirements in Inuit Communities

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Prepared by Hollander Analytical Services Ltd. in collaboration with the Nunavik Regional Board of Health and Social Services for Health Canada 2008
© Her Majesty the Queen in Right of Canada, 2008
Cat. H34-172/1-2007E-PDF
ISBN: 978-1-100-10009-8
HC. Pub. No. 3468

Table of Contents

Executive Summary

1. Introduction

The term "continuing care" refers to a complex system of service delivery that includes all of the services provided by case management, home care, home support, long term care and chronic care. As used in this project, the term continuing care refers to a range of medical and social services for individuals who do not have, or who have lost, some capacity to care for themselves. These individuals include: seniors; adults with chronic diseases or conditions; adults with mental health needs; and children with special needs. Continuing care services may be provided in the home, in supportive living environments, or in facility settings.[1] Although it is recognized that palliative care is part of the continuum of continuing care services, it was not a major focus of this study.

Continuing care services are available to Inuit communities through a Home and Community Care Program funded by the First Nations and Inuit Health Branch.[2] The program provides funding for basic home and community care services, including case management, nursing care, in-home respite care and personal care. The program does not duplicate services that already exist in communities, but coordinates and links with existing programs and services at the community and/or provincial/territorial level. In theory, the Home and Community Care Program is available to individuals of all ages who have an assessed need.[3] However, due to funding constraints, communities may need to decide if some services will be available to all client groups, or whether one or more client groups will receive priority. Each community is able to determine who is eligible to receive services.

The current project, the Continuing Care Research and Costing Project, was intended to provide a better understanding of the gaps in the continuing care services available in both First Nations and Inuit communities. The purposes of the project were: to gain an understanding of the continuing care needs of individuals living in First Nations and Inuit communities; to identify what continuing care services are currently provided in First Nations and Inuit communities: and to develop and cost options for the provision of continuing care services in First Nations and Inuit communities.

The project primarily focused on First Nations living on reserves or Inuit living in communities south of 60°L.[4] The findings from the study will feed into the development of continuing care policy options for First Nations and Inuit in Canada.

This document presents the findings from the interviews with Inuit individuals who are receiving continuing care services and their caregivers in the Nunavik Region. The findings from other components of the Continuing Care Research and Costing Project are presented in separate documents.

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2. The Nunavik Region

The Nunavik Region covers one third of Québec and is located between 55°L and 62°L. The total area is 660,000 sq. km (according to the Inuit; Makivik Corporation, no date) or 429,456 sq. km (according to the government; Institut de la statistique du Québec, 2005). It is bordered on the west by Hudson Bay, on the north by Hudson Strait and on the east by Ungava Bay and Labrador. Although Nunavik is a large region, it is sparsely populated. It is estimated that there are 10,240 people in the region, and that approximately 90% of the permanent residents are Inuit.

Health services in the region are covered under the James Bay and Northern Québec Agreement. Under the Agreement, the Québec government is responsible for providing funding for health services provided through provincial programs as well as for health services that are not included in provincial programs but which are provided to Inuit by Health Canada or other organizations. The Nunavik Regional Board of Health and Social Services is responsible for improving the well-being of the entire Nunavik population by organizing health and social service programs in the region, evaluating the efficiency of the programs and ensuring users receive good quality services that are appropriate for their needs.

Implementation of the James Bay and Northern Québec Agreement involves recognizing the unique difficulties of operating facilities and providing services in the north. Working conditions and benefits are to be sufficiently attractive to recruit and retain staff; health and social services employment opportunities are to be made available to Inuit individuals; and budgets for the development and operation of health and social services and facilities are to take into account the impact of northern costs. Per capita health care costs are, on average, higher in Nunavik then elsewhere in Québec(Duhaime, 2004).[5] It is estimated (based on 2004 figures) that public spending on health per capita is $5,940 for Nunavik and $2,376 for Québec (Duhaime, 2004).

There are 14 communities in Nunavik, 7 on the Hudson coast and 7 on the Ungava coast. The three largest communities are Kuujjuaq, Inukjuak and Puvirnituq (all of these communities were included in the current study). The communities are located 1,000 to 1,900 km north of Montreal (Mativik Corporation, no date). There are no road links to Nunavik from the south or between communities within the region. Air service provides links between the communities and elsewhere year round.

Continuing care services in the region include home care, a day program and facility care. Home care services have been in place in the region since 2002. The number of recipients doubled between 2002/2003 and 2003/2004, but remained relatively constant between 2003/2004 and 2004/2005 (Nunavik Regional Board of Health and Social Services, 2004, 2005). In 2004/2005, approximately 14% of home care users were between 0 and 17 years of age, 43% were between 18 and 64 years of age, and 44% were 65 years of age or older. A day centre opened in Kuujjuaq in April 2004. The centre provides seniors with transportation services, hot lunches, organized activities and socialization activities five days a week. There are 10 long term care beds in Kuujjuaq, 8 long term care beds in Puvirnituq and 8 beds for individuals with mental health problems and/or intellectual impairment in Inukjuak.

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3. Methodology

3.1 Client and Caregivers Samples

The focus of the Continuing Care Research and Costing Project was on individuals who do not have, or who have lost, some capacity to care for themselves. As noted previously, these individuals included: seniors; adults with chronic diseases or conditions; adults with mental health needs; and children with special needs.

The client target sample was 90 individuals, 30 from each of three study communities. The sample consisted of individuals who were receiving continuing care services at home or in the community and individuals who were receiving services in a facility. The sample size was affected by the amount of funding available for the study, but was double what had initially been envisioned. Individuals receiving continuing care services at home as well as those receiving services in a facility were included. All of the facility clients who were considered capable of participating were included in the study. Home care clients were randomly selected from lists of individuals who were receiving continuing care services at the time of the study. A total of 79 individuals participated, 57 who were receiving services at home and 22 who were receiving services in a facility.

One of the questions of interest in this study was the extent to which family caregivers were providing care and support to individuals requiring continuing care services, regardless of whether they were receiving the services at home or in a facility. Caregivers were identified for clients who participated in the study. Where possible, clients were asked to identify a family caregiver who provided him/her with care and/or support. Of the 57 clients living at home, 20 (35.1%) indicated they had a family caregiver. Of the 22 clients living in a facility, 1 (4.5%) indicated he/she had a family caregiver. In some cases, paid health care workers were identified as being the caregiver. Ultimately, 38 caregivers participated in the study. All of the family caregivers (14) provided care to clients receiving services at home. All but two of the 24 paid health care workers provided care to clients receiving services in a facility.

3.2 Research Tools

Several research tools were created for the project. These included consent forms for both clients and caregivers, a measure of functional status, a Client Interview, and a Caregiver Interview. With the exception of the functional status measure (which is a standardized tool), all of the materials were developed in collaboration with First Nations and Inuit representatives.

Three client consent forms were created: one for adults who were capable of providing consent on their own behalf; one for proxies to complete on behalf of adults who were not capable of providing consent; and one for parents/guardians to complete on behalf of children. The general content of each of these consent forms was the same and included: information regarding the purpose of the study; what the study involved; anticipated risks, discomforts, benefits and costs; confidentiality issues regarding the information collected; the right to withdraw from the study without penalty; and contact information for individuals who had questions. A consent form was also created for use with caregivers. This form was similar to the consent forms used for clients, but also indicated that they were being asked to participate because it was understood they provided care and/or support to someone who had participated in the study.

In studies focusing on the provision of continuing care, it is more important to assess an individual's functional status than to determine his/her diagnoses as individuals with the same health condition (such as lung cancer) may require different continuing care services because of their different functional status. In this study, clients' functional status was assessed using the Système de mesure de l'autonomie fonctionnelle (Functional Autonomy Measurement System or SMAF) developed by Hébert, Carrier and Bilodeau (1988). The tool consists of 29 items that measure functional abilities in five areas: activities of daily living; mobility; communication; mental functions; and instrumental activities of daily living. Higher scores are indicative of poorer functioning.

The Client Interview tool was used to gather information regarding clients who were receiving continuing care services either at home or in a facility. The same interview tool was used for both groups of clients. The Client Interview consisted of several sections which addressed: client demographics; housing; use of health related services; satisfaction with health related services; preferences for where services should be provided; and perceptions of one's health and quality of life.

The Caregiver Interview tool was used to gather information from individuals who provided care and support to the client. Although intended to be used primarily with family caregivers, this tool was used with both family caregivers and paid health care personnel. The same tool was used with caregivers of clients who were receiving services at home and with caregivers of clients who were receiving services in a facility. The Caregiver Interview consisted of several sections which addressed: the caregiver's relationship to the client; the type of care provided; costs associated with the client's care; the caregiver's satisfaction with the services the client was receiving; the caregiver's preferences for where the client should receive services; the impact of caregiving on the caregiver; and caregiver demographics.

3.3 Research Approach

Once clients were identified, they were assigned a study number and contact information was provided to an interviewer who lived in the same community. The list of clients assigned to an interviewer was reviewed by knowledgeable individuals within the community to determine if they were well enough to participate, were currently in the community, and so on. Potential participants were then phoned or visited in person regarding their participation in the study. If a potential participant agreed to participate, the interviewer then made arrangements to conduct the interview, generally in the client's home.

The interviewer began the client interview by reviewing the consent form and obtaining the client's written agreement to participate. The functional status measure was generally administered first (when appropriate), followed by the Client Interview. Permission to contact a (family) caregiver was requested when clients indicated that they had one. If a client indicated that he/she had a caregiver, the interviewer contacted the caregiver to see if he/she was interested in participating. If the caregiver was willing to participate, the interview was set up for a mutually convenient time. The interviewer began the caregiver interview by reviewing the consent form and obtaining the caregiver's written agreement to participate. Only the Caregiver Interview was administered to the caregivers. Multiple interviews were conducted with the caregiver, if required. Individuals who served as a proxy for the client (because the client did not have the ability to understand the questions, either because of a mental health/cognitive condition or because of age (for example, in the case of a child)) and as a caregiver for the client, were first asked the questions on the Client Interview then the questions on the Caregiver Interview.

As noted, individuals who lived in the same community as the clients were hired to conduct the interviews. A brief job description was developed to assist with the recruitment and selection of interviewers. An emphasis was placed on experienced interviewers who were familiar with the study communities and who were able to communicate in both Inuktitut and English. It was felt that there would be very few individuals who would meet the requirements. Thus, key personnel at the health centres, at the hospitals, at the CLSCs and with the Persons Lacking Autonomy program in the three study communities (as appropriate) were asked to recommend potential interviewers. The names of potential interviewers were submitted to the Local Project Coordinator. The Local Project Coordinator contacted each potential interviewer by phone, described the study and the roles and responsibilities of the interviewers in more detail and ascertained whether the individual was interested in working on the study. Interested individuals were then invited to attend a one day training session in their own community. They were also told that they would need to obtain a police security check prior to the training session. During the course of the study, the Local Project Coordinator maintained regular contact with the interviewers in each of the study communities (regardless of where he was physically located) to ensure that the work was progressing and any problems were identified and addressed. The Local Project Coordinator also spoke with the nurses in the various study communities to ensure that no issues had arisen from their perspective.

3.4 Data Coding and Entry

Comprehensive data coding manuals were developed for each of the three data collection tools (the SMAF, the Client Interview, and the Caregiver Interview). This was done to ensure that the coding of information was consistent: across individuals for the same tool; across different tools for the same questions (for example, across the Client and Caregiver Interviews); and across interviewers. The coders discussed any issues that arose as a group and a consensus was reached. Open-ended questions were coded verbatim. In some cases, responses were regrouped into a smaller number of categories.

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4. Findings

4.1 Clients

The findings from the interviews with clients indicated that the majority of home care clients had low to moderate care needs and that facility clients had moderate to high care needs (as measured by the SMAF). While the home care clients covered the full age range (from 0 to 80 years and older), approximately half of the facility clients were under the age of 35.

Both home and facility clients received assistance with case management like activities, namely assistance with obtaining medical equipment, medical supplies and medications, assistance with coordinating and arranging medical appointments and health services, and assistance with identifying professionals who can provide services and/or medical equipment. Less than half of the clients indicated that they received assistance from family caregivers. In general, clients were satisfied with the continuing care services they were receiving. It is cautioned, however, that this finding should not be interpreted as indicating that no additional services are required.

Overall, half of the clients rated their health as "Very Good" or "Good". The three things most frequently reported as affecting an individual's health were: physical, emotional, mental and spiritual balance; stress/worry related to medications; and emotional well-being. Spiritual beliefs and/or values were identified most frequently as having a major effect on people's health and/or lives. Clients were asked what things made them happy and what things made them unhappy. The things that make people the happiest are: outdoor activities; being with other individuals; and leisure activities, such as playing bingo. The things that make people the saddest are: drug and/or alcohol use; negative family issues; and noise.

Over 96% of clients indicated that they would prefer to receive continuing care services in their own community. Over 60% of clients indicated they would prefer to receive services in their own home and 43% indicated they would prefer to receive services in the home of a family member.[6] Over 75% of clients indicated they would prefer to receive care from a family member. Another 51% indicated they would prefer to receive care from the formal care system.[7] Over 60% of clients indicated that there was a need for other housing options. Some respondents noted that there was need for additional housing in general in the communities. Other respondents commented on the need for appropriate housing. When asked where they would prefer to receive care and services in the future, approximately 70% of the clients indicated that they would prefer to receive services in a home or community setting. Approximately 25% of the clients indicated that they would prefer to receive services in a hospital.[8]

4.2 Caregivers

A total of 38 caregivers, 14 family caregivers and 24 formal caregivers, participated in the study. Over 90% of the caregivers were women. While 93% of family caregivers were able to communicate in the client's preferred language, only half of the formal caregivers were able to do so.

Both family caregivers and formal caregivers provided assistance with coordinating and arranging medical appointments and services and obtaining medical equipment, medical supplies and medications. Family caregivers were more likely than formal caregivers to assist with financial tasks, light housekeeping and home maintenance, and house maintenance inside. Family caregivers are generally satisfied with the services clients receive through the formal care system.

In general, family caregivers' living and employment situation did not appear to be negatively impacted because of providing care. The majority of family caregivers did not respond to questions regarding the positive and negative impacts of providing care. The majority of formal caregivers indicated that providing care had no positive or negative impacts because it was part of their job.

Caregivers were asked for suggestions to improve the care and quality of life for clients. A substantial proportion of family caregivers indicated that they had no suggestions. However, formal caregivers commented on the need for clients to be in more appropriate care settings, to have more services, and to have more family contact.

When asked where clients should receive services, all of the caregivers indicated that the client should receive them in his/her own community. Over 85% of family caregivers felt that clients should receive services in his/her own home or in the home of a family member. The findings from the formal caregivers were more mixed, consistent with the perspective that clients should receive services in appropriate care settings. Since the needs of clients vary, it is not unreasonable to expect that what constitutes an "appropriate care setting" may also vary. Approximately 43% of family caregivers and 71% of formal caregivers felt that clients should receive services from both family caregivers and the formal care system.

Over 57% of family caregivers and 70% of formal caregivers indicated that there is a need for additional housing options in the community. Many of the family caregivers and the formal caregivers did not respond to questions regarding where clients should receive services in the future if their health deteriorates.

4.3 Costs of Receiving and Providing Care

In order to gain an understanding of the costs associated with the provision of continuing care services to Inuit, clients were asked several questions regarding their out-of-pocket expenditures over the last year. While 73% of clients indicated that they had received supplies (primarily medications), they indicated that the costs were covered under the James Bay and Northern Québec Agreement and thus, they were not aware of what the supplies and services cost. Similar findings were obtained from the caregivers.

Clients appeared to receive little assistance from family members. This finding is consistent with the finding that relatively few clients indicated they had a family caregiver. The majority of clients received assistance from health care professionals (that is, nurses and physicians) when required, particularly when they lived in a facility. It was not possible to cost services based on the available data.

Neither clients nor caregivers were able to provide information regarding the continuing care services they accessed. The Nunavik Regional Health and Social Services Board was therefore asked for information regarding the costs of providing both home and community care and facility care. As funding for health and social services in the region is integrated, the region was unable to provide costing information the way it was requested. However, several factors that affect the provision of home care services were identified. These included benefits and salaries for health professionals (including nurses and home care workers), the need to have interpreters assist with the provision of care, and transportation costs related to both people and resources. The region also noted that funding for the provision of continuing care services comes from multiple sources. Each of the sources has different requirements with respect to access and reporting.

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5. Discussion

5.1 Introduction

Several research questions were addressed by the Continuing Care Research and Costing Project. These were:

  • What is the number of individuals assessed as having continuing care needs (by type of care) in First Nations/Inuit communities?
  • Have clients been appropriately placed in home care and facility care, respectively?
  • What are the type and magnitude of services required at each care level in home and facility care?
  • What is clients' existing level of satisfaction with the continuing care services they receive?
  • What is clients' quality of life?
  • What are the clients' preferences for care settings?
  • What are the contributions of informal caregivers?
  • What are the differences in service provision by community isolation?
  • What are the costs of providing services?

The interviews with Inuit continuing care clients and their caregivers provide some answers to each of these questions.

5.2 Individuals Requiring Continuing Care Services in Inuit Communities

The target sample of 90 individuals was determined by available funds. The obtained sample represents 87.8% of the target, which resulted in small numbers in several instances where the sample was divided (for example, into home and facility clients). This would likely have been the case had the full sample been realized. It is important to note that the facility sample represented 85% of the number of available beds. Overall, the home sample represented 19.3% of clients receiving continuing care services at home. Approximately equal numbers of males and females require continuing care services, even for individuals living in a facility.[9] One of the key findings is the number of younger individuals who are receiving continuing care services, particularly in a facility; 22.8% of clients receiving services at home and 45.5% of clients receiving services in a facility were under the age of 35. In many continuing care studies, the majority of clients are seniors (generally defined as individuals 65 and older). For the Inuit, 43.9% of those receiving services at home and 22.7% of those receiving services in a facility were 65 years of age and older. As a population, Inuit tend to be younger and may experience age related conditions at a younger age. Thus, if one considers seniors to be those aged 55 and older, the proportions increase to 66.7% and 31.8% for individuals receiving services at home and in a facility, respectively.

5.3 Location of Clients Based on Their Current Care Needs

The findings from the SMAF suggest that clients receiving continuing care services at home generally have low to moderate care needs. Clients receiving continuing care services in a facility generally have moderate to high care needs. While this suggests a potential overlap in the mid-range, it also suggests that clients at the upper and lower care levels are located in appropriate care settings. A closer examination of individuals in the mid-range indicated that individuals living in facilities have more difficulties with mental functions than those living at home.

5.4 Types of Services Required for Individuals Living at Home and in Facilities

Despite the fact that clients may be located in appropriate care settings, there are several indications that they are not receiving sufficient services, or a broad enough range of services. While many clients receive care-related services (that is, clinical necessities), few clients living at home receive housekeeping, meal preparation or house maintenance services. Very few clients appeared to receive opportunities for psychological/social activities, respite services, or companionship time. In fact, one of the areas for improvement highlighted for individuals living in facilities was the need for more activities.

5.5 Clients' and Caregivers' Satisfaction with Current Continuing Care Services

In general, clients appeared to be satisfied with the services they receive from both family caregivers and the formal care system with respect to: services being provided when they are needed; how long services are provided for; and the characteristics of the individuals who are providing the services. Clients receiving services from formal caregivers noted, however, that they have little say in who will provide services and when services will be provided. These findings likely reflect the fact that there are a limited number of formal caregivers available. Family caregivers also indicated that they were satisfied with the formal care services clients received. Approximately 9% of clients indicated that they had refused treatments or services in the past year. In all cases, the refusals were related to clients' preferences rather than their perceptions of the quality of care they were receiving. In general, clients appeared to be satisfied with the care they received outside of their communities.

5.6 Clients' Perceived Health and Quality of Life

About half of the clients considered their health to be "Good" or "Very Good", despite the fact that they were experiencing functional difficulties, sometimes in several areas. Clients indicated that their health was affected by physical, emotional, mental and spiritual balance as well as concerns regarding medications. Spiritual beliefs and/or values were frequently identified as having a major influence on people's health and/or lives. The things that make clients the happiest are outdoor activities, being with other individuals, and leisure activities. The things that make clients the saddest are drug and/or alcohol use, negative family issues and noise.

5.7 Clients' and Caregivers' Preferences for Where Services are Received

Both clients and caregivers indicated a preference for clients to receive continuing care services in their own community. Clients generally indicated a preference to receive services at home (either in their own home or in the home of a family member). This perspective was supported by family caregivers, all of whom were providing care to individuals living at home. Formal caregivers, most of whom were providing care to individuals living in a facility, provided mixed responses. It was felt that about a third of the clients should be living either in their own home or in the home of a family member. It was also felt that approximately one-half of clients would benefit from living in a personal care home or an elders/seniors home. The findings from the formal caregivers suggest that not all clients were living in an appropriate location with respect to the type of care they required and/or the type of care that was available to them. The findings from both clients and formal caregivers suggest that additional appropriate housing and services are required.

Clients and caregivers were also asked who should provide services to clients. The majority of clients living at home indicated that they would prefer to receive services from family members, although about half of the clients also indicated that they would prefer to receive services from the formal care system.[10] Formal caregivers indicated that over 70% of clients currently living in a facility should receive care from both family caregivers and the formal care system. However, it would appear that individuals living in a facility currently have little contact with their families.

Both clients and caregivers were asked where clients should receive services in the future should their health deteriorate and/or should they require palliative/end-of-life care. About 70% of clients indicated that they would prefer to receive care at home in both cases; approximately 25% indicated that they would prefer to receive care in a hospital setting in both cases. The majority of caregivers did not provide responses to these questions.

5.8 The Contributions of Family Caregivers

Few family caregivers were identified, even for those clients receiving services at home. Of the clients living at home, 35.1% indicated that they had a family caregiver; 4.5% of clients living in a facility indicated they had a family caregiver. This finding may reflect clients' understanding of what a caregiver is. The majority of family caregivers may not have been seen as caregivers per se as they were either parents or spouses.

Over 70% of family caregivers work. Of these, half work more than 20 hours a week. Half of the family caregivers also indicated that they provided care to someone in addition to the client. Thus, family caregivers may be unable to provide a lot of assistance to the client on an ongoing basis. While some family caregivers provide assistance with housekeeping, personal care, and nursing or medical care, they also assist with: identifying professionals who can provide medical services and/or equipment; coordinating and arranging medical appointments; and obtaining medical equipment, supplies and medications. These findings suggest that family caregivers work with the formal care system to ensure that clients' basic health care needs are met.

5.9 The Effects of Community Location

As with other Inuit communities in Canada, the communities included in this study are located in northern, remote locations. While the study communities are large compared to other Inuit communities, they are relatively small compared to "large" First Nations communities and are substantially smaller than many southern communities. Both the size and the location of the communities have a substantial impact on the provision of continuing care services for Inuit. For example, funding based on a per capita formula is likely to be insufficient to meet the needs, given some of the costs associated with the location of the communities. This is highlighted by the fact that funding for home care comes from nine different sources. Many health professionals come from southern communities as it is difficult to recruit and retain health care workers within the region. There are substantial costs associated with their salaries and benefits, and the provision of interpreter services to assist them in providing care. Many specialist services are only available in the region two or three times a year. At other times, clients may not be able to access the services, may be able to access limited services, or may need to leave the region and travel to southern communities to obtain the services. Transportation costs have a substantial impact on the provision of continuing care services in the region as much of the transportation of people (both health professionals and clients) and medical supplies and equipment must be done by air.

5.10 Cost of Providing Services

The findings from this study do not enable conclusions to be made regarding the cost of providing continuing care services to home and facility clients by level of care. Nevertheless, it is clear that "hidden" costs associated with the provision of such services are substantial. As noted previously, salaries, benefits and transportation costs all have substantial impacts on the provision of services.

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6. Future Directions

The findings from this phase of the Continuing Care Research and Costing Project indicated that there are several areas in which improvements can be made. These include the following:

  • Additional funding is required to hire, train, and retain individuals who are specifically responsible for the collection, analysis and reporting of utilization data.
  • There is a need for additional general and specialized housing in the region. Many of the home care clients live in over crowed homes. For individuals who require continuing care services in a facility setting, there is a need for assisted living settings, for elders' lodges, homes for the physically challenged and homes for the mentally challenged.
  • Additional services could be added to improve care for current continuing care clients. Key areas to consider include physiotherapy, social and recreational activities, and specialized education for children with special needs.
  • Individuals living in facilities need more appropriate care settings, activities that are designed to both meet their needs and ensure they remain an important part of the community, and more involvement with family members.
  • There is considerable need to increase local capacity. Interested individuals need to be identified and trained. Steps need to be taken to ensure that training and support can be ongoing and that motivation incentives are available in order to facilitate the retention of trained individuals. "Pools" of trained individuals should be developed for high need occupations such as medical interpreters, home support workers, nurses, etc., so that the necessary resources are available at the community level when they are required. Additional funding is required to both maintain and build on existing capacity.

Developing and implementing these changes would likely entail enhanced collaboration among several levels of government and several departments within each level. Inuit are generally happy with what they have and are unlikely to make requests for additional services. That does not mean, however, that existing services are sufficient. To the extent that it is possible to do so, from both a practical and a financial perspective, the improvements should be made at the community level. Where that cannot be done, attempts should be made to improve services at the sub-regional and regional levels.

7. Conclusion

The Nunavik Region has established a number of resources for individuals who require continuing care services. It is hoped that the findings from this phase of the Continuing Care Research Project will enable the region to improve these resources for current clients and their families as well as for individuals who may require the services in the future.

[1] The term "facility" refers to a range of housing options, outside of a private home, where continuing care services may be provided. It includes, but is not limited to, group homes and personal care homes.

[2] This program is also available for First Nations. First Nations are also able to receive continuing care services through the Assisted Living Program funded by the Social Policy and Programs Branch of Indian and Northern Affairs Canada (INAC). The Assisted Living Program is not available to Inuit communities.

[3] The provision of continuing care services depends, in part, on the risk to the client and caregiver. The services need to be provided within established standards, policies and regulations for service practice (Government of Canada, 2004).

[4] Health Canada and INAC are involved in the delivery of continuing care services for First Nations living on reserve and in Inuit communities south of 60°L. Continuing care services are delivered by First Nations governments in the Yukon and by the governments of Nunavut and the Northwest Territories.

[5] This is true even when Nunavik is compared to other remote regions of the province.

[6] Some clients provided more than one response to this question.

[7] Again, some clients provided more than one response to this question.

[8] Some clients provided more than one response to this question.

[9] Continuing care studies involving non-Aboriginal clients generally find that females outnumber males.

[10] Clients could indicate a preference for assistance from more than one source.

Acknowledgements

Our thanks to all of the clients and caregivers who participated in this phase of the project. Their willingness to share their knowledge and experience regarding continuing care services in Inuit communities is greatly appreciated.

Our thanks as well to the many individuals within the Nunavik Health Region who assisted with the implementation of the study in Kuujjuaq, Puvirnituq and Inukjuak, including: Nunavik Regional Board of Health and Social Services; Lucy Angiyou; Beethoven Asante; Anne Boutin; Jacinthe Boutin; Helen Cumberbatch; Alicie Eliyassialuk; Roselyne Fergusson; Martha Munick; Julie Nastapoka; Lisa Paradis; Dominique Pelland; Nancy Piquette; Diane Gadbois; Suzanne Thibodeau; Mina Tukai; and Lydia Yates.

We acknowledge the research assistance provided by: Sheena Dumitrescu; Elizabeth Karvelis; Nicole Littlejohn; Richard Murray; Claudette Whittom; and Wendy Young.

Finally, we thank: participants from the First Nations and Inuit Health Branch, Health Canada; the Social Policy and Programs Branch, Indian and Northern Affairs Canada; the Assembly of First Nations; and the Inuit Tapiriit Kanatami. Their commitment to improving the health and well-being of First Nations and Inuit has made the Continuing Care Research and Costing Project possible.

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List of Tables

List of Figures

Appendices

Appendix A: Resolution 2005-31
Appendix B: Draft Information and Data Sharing Agreement
Appendix C: Definitions of Study Participant Groups
Appendix D: Research Tools
Appendix E: Materials Used With the Interviewers
Appendix F: Things That Make Clients Happy and Unhappy
Appendix G: Future Services
Appendix H: Coding of Expenditures and Time

Health Canada is the federal department responsible for helping the people of Canada maintain and improve their health. We assess the safety of drugs and many consumer products, help improve the safety of food, and provide information to Canadians to help them make healthy decisions. We provide health services to First Nations people and to Inuit communities. We work with the provinces to ensure our health care system serves the needs of Canadians.

This publication can also be made available in/on computer diskette/large print/audiocassette/Braille upon request.

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E-Mail: publications@hc-sc.gc.ca

Prepared under contract to Health Canada by Hollander Analytical Services Ltd., in collaboration with the Nunavik Regional Board of Health and Social Services. The views expressed herein do not necessarily represent the views of Health Canada.

1. Introduction

1.1 Defining Continuing Care

The term "continuing care" refers to a complex system of service delivery rather than to a type of service, such as physician services or hospital services (Federal/Provincial/Territorial Subcommittee on Continuing Care, 1992). The system has a number of components and is integrated conceptually, as well as in practice, through a "continuum of care". The term reflects two complementary concepts: that care may "continue" over a long period of time, and that an integrated program of care "continues" across service components (that is, that there is a continuum of care).

Continuing care is generally used to describe a system of service delivery that includes all of the services provided by case management, home care, home support, long term care and chronic care. The efficiency and effectiveness of the system depends not only on the efficiency and effectiveness of each component, but also on the way that the service delivery system is structured (Federal/Provincial/Territorial Subcommittee on Continuing Care, 1992).

As used in this project, the term continuing care refers to a range of medical and social services for individuals who do not have, or who have lost, some capacity to care for themselves. These individuals include: seniors; adults with chronic diseases or conditions; adults with mental health needs; and children with special needs. Continuing care services may be provided in the home, in supportive living environments, or in facility settings.[1] Although it is recognized that palliative care is part of the continuum of continuing care services, it was not a major focus of this study.

1.2 Continuing Care Services in First Nations and Inuit Communities

Continuing care services are available to First Nations and Inuit communities through an Assisted Living Program funded by the Social Policy and Programs Branch of Indian and Northern Affairs Canada (INAC) and through a Home and Community Care program funded by the First Nations and Inuit Health Branch (FNIHB) of Health Canada.

The Assisted Living Program is delivered by First Nations organizations (the program is not available in Inuit communities). The Assisted Living Program consists of three components: in-home care, which includes meal preparation, light housekeeping, short-term respite care, and minor home maintenance; foster care, which provides funding for supervision and care in a family setting to individuals who are unable to live on their own because of physical or psychological limitations but who do not need constant medical attention; and facility (institutional) care, which reimburses expenses for Type I and Type II[2] social care in facilities (Government of Canada, 2004).

The Assisted Living Program is available to individuals normally living on-reserve who have been formally assessed by designated health and/or social service personnel as requiring care because they have functional limitations due to age, health problems or disability. The program is not intended for individuals who have the means to obtain services for themselves.

The Home and Community Care Program is provided primarily by First Nations and Inuit organizations (the program is available in over 600 communities across the country).[3] The program provides funding for basic home and community care services, including case management, nursing care, in-home respite care and personal care. The program does not duplicate services that already exist in communities, but coordinates and links with existing programs and services at the community and/or provincial/territorial level.

In theory, the Home and Community Care Program is available to individuals of all ages who have an assessed need.[4] However, due to funding constraints, communities may need to decide if some services will be available to all client groups, or whether one or more client groups will receive priority. Each community is able to determine who is eligible to receive services.

Few other programs (regardless of whether they are provided by the federal government, by a provincial/territorial government, by a First Nation or Inuit organization, or by another agency) contribute to the provision of continuing care services in First Nations and Inuit communities.

1.3 The Continuing Care Research and Costing Project

Despite the availability of the Assisted Living and Home and Community Care Programs, there appear to be substantial gaps in the continuum of services being provided to First Nations and Inuit individuals. Currently, neither INAC nor Health Canada have all the necessary authorities to provide a full range of continuing care services in First Nations and Inuit communities.[5]

The current project, the Continuing Care Research and Costing Project, was intended to provide a better understanding of the gaps in the continuing care services available in First Nations and Inuit communities. The purposes of the project were:

  • To gain an understanding of the continuing care needs of individuals living in First Nations and Inuit communities;
  • To identify what continuing care services are currently provided in First Nations and Inuit communities: and
  • To develop and cost options for the provision of continuing care services in First Nations and Inuit communities.

The project primarily focused on First Nations living on reserves or Inuit living in communities south of 60°L.[6] The findings from the study will feed into the development of continuing care policy options for First Nations and Inuit in Canada.

Several research questions were addressed by the project. These are:

  • What is the number of individuals assessed as having continuing care needs (by type of care) in First Nations/Inuit communities?
  • What are the type and magnitude of services required at each care level in home and facility care?
  • What are the contributions of informal caregivers?
  • What are the differences in service provision by community isolation?
  • What are the clients' preferences for care settings?
  • What is their existing level of satisfaction with the continuing care services they receive?
  • What is their quality of life?
  • Have clients been appropriately placed in home care and facility care, respectively?
  • What are the costs of providing services?

The Continuing Care Research and Costing Project involved several components including:

  • A review of published and unpublished literature regarding continuing care in Aboriginal populations in Canada, Indigenous populations internationally and non-Aboriginal populations in Canada;
  • A review of national surveys and databases containing information regarding continuing care needs in Aboriginal populations in Canada;[7]
  • Interviews with key informants, including representatives of First Nations and Inuit communities and regional and national organizations, and representatives from Health Canada and INAC at both the regional and national levels; and
  • Interviews with First Nations and Inuit individuals who are receiving continuing care services and their caregivers (for example, family members and close friends).

1.4 From One Study to Three Studies

Initially, Hollander Analytical Services Ltd., a health services and policy research company, was contracted by Health Canada to conduct the interviews with First Nations and Inuit individuals and their caregivers in eight communities (four First Nations communities in Manitoba, three First Nations communities in Québec, and one Inuit community in Nunavik). Three advisory groups, one at the national level, one at the regional level in Manitoba and one at the regional level in Québec, were to assist with the development and implementation of this component of the Continuing Care Research and Costing Project. A representative from Nunavik sat on the Québec regional advisory group.

As a result of discussions with the regional advisory groups and the funder, it was decided that the First Nations of Québec and Labrador Health and Social Services Commission (FNQLHSSC; Commission de la santé et des services sociaux des Premières Nations du Québec et du Labrador, CSSSPNQL) would be responsible for conducting the study in the First Nations communities in Québec, the Assembly of Manitoba Chiefs (AMC) would be responsible for conducting the study in the First Nations communities in Manitoba, and Hollander Analytical Services would be responsible for conducting the study in the Inuit community. Hollander Analytical Services served in an advisory capacity for both the FNQLHSSC and the AMC.

These decisions had several consequences with respect to Inuit involvement in the study. First, two more Inuit study communities in Nunavik were added (for a total of three communities) in order to increase the size and breadth of the study sample. Second, the study sample was doubled (from 45 individuals to 90 individuals) in order to obtain a better picture of the needs of Inuit continuing care clients and their caregivers. Third, the Nunavik representative on the Québec regional advisory group became the primary contact for the Inuit study sites, a role which was in addition to her other responsibilities. Fourth, it was necessary for Hollander Analytical Services to hire a Local Project Coordinator to implement this component of project in the Nunavik region. This individual did not live in the region, but was familiar with one of the study communities. Hollander Analytical Services was responsible for the coding and analysis of the Inuit data and for developing the report on the findings from the Inuit study communities.

1.5 Organization of this Report

This document presents the findings from the interviews with Inuit individuals who are receiving continuing care services and their caregivers. As the Nunavik representative and the Local Project Coordinator were actively involved in the implementation of this component of the project, their experiences have been incorporated into the document. The findings from other components of the Continuing Care Research and Costing Project are presented in separate documents.

In the next chapter (Chapter 2), several issues regarding the Inuit research and policy environment are examined. The methods used for the interviews with Inuit individuals and their caregivers are presented in Chapter 3. Processes related to the hiring and training of interviewers are discussed in Chapter 4. Both Chapters 3 and 4 provide commentary on lessons learned as part of the current study. Chapters 5, 6 and 7 present the findings from the Inuit continuing care clients and their caregivers. The final chapter, Chapter 8, discusses the findings and identifies areas for future development.

2. Research and Policy Environment

2.1 Introduction

There are four Inuit regions in Canada: Inuvialuit (Northwest Territories); Nunavut; Nunavik (Northern Québec); and Nunatsiavut (Labrador). Half of the Inuit population lives in regions outside of Nunavut (Inuit Tapiriit Kanatami, 2004c). Inuvialuit, Nunavut and Nunatsiavut are briefly described below. Because the current research project focused on Nunavik, this region is described in more detail in Section 2.4.

Inuvialuit covers approximately 1.2 million sq. km. The economy is traditionally based, with an emphasis on trapping, hunting and fishing. It is estimated that there are more than 42,083 people in Inuvialuit. Approximately half of the population is Aboriginal. The region includes the communities of Inuvik, Tuktuujaqtuuq (Tukoyaktuk) and Aklaavik (Aklavik) (Solutions North, 2002).

Nunavut became Canada's newest territory in April, 1999. The territory consists of almost 2 million sq. km (approximately 20% of Canada); about 45% percent of the territory lies on the northern part of Canada's mainland. Many Inuit still live off the land, following traditional Inuit practices of trapping, hunting, and fishing. Carving, jewellery making and printmaking are contributing substantially to the economy. The region has a population of about 28,410. Communities include Iqaluit, Panniqtuuq (Pangnirtung) and Iglulik (Igloolik) (Solutions North, 2002)

Nunatsiavut covers approximately 72,520 sq. km. Economic opportunities focus on traditional skills and training and skills transfer opportunities. An important contributor to economic development is the Voisey's Bay Project; Voisey's Bay has one of the richest nickel-copper-cobalt deposits in the world. It is estimated that the population of Nunatsiavut is approximately 5,300. The region includes the communities of Happy Valley-Goose Bay, Nunainguk (Nain), and Aqvituq (Hopedale) (Labrador Inuit Association, 2005).

2.2 The Cultural Context of the Research Environment

Inuit Tapiriit Kanatami, the national association mandated to advocate on behalf of Inuit, has stated, that increasingly, the federal government has been moving toward policies that focus on First Nations on reserve (Inuit Tapiriit Kanatami, 2004c). Many federal programs designed for the benefit of Inuit have often been "ineffective, poorly coordinated, and inadequately targeted" (Inuit Tapiriit Kanatami, 2004c, p. 2). The problems are exacerbated by program under funding, and the lack of an accountability framework. Integrated Inuit specific policies and programs need to be developed and comprehensive Land Claim Agreements need to be implemented (Inuit Tapiriit Kanatami, 2004c).

All of the Inuit regions have signed land claims agreements. These agreements deal with land, natural resources, environment, economic development and some aspects of self-government. They do not, however, cover the full range of social, cultural and economic issues affecting Inuit. In developing the various regions, Inuit have often focused on "public government". This is reflected to varying degrees in the four Inuit regions. This decision means that Inuit are "taxpaying Canadians who see themselves as 'more than First Canadians, but also Canadians First'" (Inuit Tapiriit Kanatami, 2004c, p. 3). Nevertheless, it is felt that the federal government continues to have fiduciary responsibility for the Inuit with respect to Aboriginal rights, economic development, education, environmental issues, health and housing and that an integrated policy approach for Inuit specific issues needs to be developed to address complex social and economic problems. These problems include short life expectancy, high unemployment rates, low incomes, poor housing conditions and high rates of communicable diseases.

2.3 The James Bay and Northern Quebec Agreement

The James Bay and Northern Québec Agreement, which was signed in November 1975, is considered to be the first modern land claims settlement in Canada. Signatories to the Agreement included the Government of Québec, the James Bay Energy Corporation, the James Bay Development Corporation, The Québec Hydro-Electric Commission, the Grand Council of the Crees (of Québec), the Northern Québec Inuit Association, and the Government of Canada. The Agreement addressed several issues including: land issues; hunting, fishing and trapping rights; local government; and health and social services (INAC, 2004).

Under the James Bay and Northern Québec Agreement (and an amendment, the Northeastern Québec Agreement, which was signed in January 1978), the territory was divided into three types of lands. Category I lands are designated for the exclusive use and benefit of Aboriginal people. Category II lands belong to the province, but Aboriginal people have exclusive hunting, fishing and trapping rights. Category III lands also belong to the province, and both Aboriginal and non-Aboriginal people may hunt and fish on them. However, Aboriginal people have exclusive rights to harvest certain aquatic species and fur-bearing mammals (INAC, 2004).

With regard to governmental powers, Inuit communities are incorporated as municipalities and have specific powers under Québec legislation (INAC, 2004). Regional government structures created under the Agreement include the Kativik Regional Government and the Kativik School Board. An Inuit corporation, the Makivik Corporation, was also created under the Agreement in June 1978. This corporation is responsible for receiving and administering compensation moneys, overseeing the implementation of the Agreement and ensuring the integrity of the Agreement (Makivik Corporation, no date). The James Bay and Northern Québec Agreement substantially affected federal involvement in Northern Québec. The federal government now subsidizes many services it previously provided, and the services are now administered by the local governments and the province of Québec.

For example, under the Agreement, the Québec government is responsible for providing funding for health services provided through provincial programs as well as for health services that are not included in provincial programs but which are provided to Inuit by Health Canada or other organizations. As part of implementing the Agreement, the unique difficulties of operating facilities and providing services in the north are to be recognized by Québec. Working conditions and benefits are to be sufficiently attractive to recruit and retain staff; health and social services employment opportunities are to be made available to Inuit individuals; and budgets for the development and operation of health and social services and facilities are to take into account the impact of northern costs.

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2.4 The Nunavik Region[8]

The Nunavik Region covers one third of Québec and is located between 55o L and 62o L. The total area is 660,000 sq. km (according to the Inuit; Makivik Corporation, no date) or 429,456 sq. km (according to the government; Institut de la statistique du Québec, 2005). It is bordered on the west by Hudson Bay, on the north by Hudson Strait and on the east by Ungava Bay and Labrador. Although Nunavik is a large region, it is sparsely populated. Provincial statistics for 2004 estimate that there are 10,240 people in the region (Institut de la statistique du Québec, 2005). Approximately 90% of its permanent residents are Inuit.

Inuit have inhabited the Nunavik region for more than 4,000 years. Over the past 300 years, the most substantial and long-standing contact between Inuit and Europeans was with Anglican Missionaries, traders, and the Hudson's Bay Company (Mativik Corporation, no date).

Inuit society is undergoing major change. Although Inuit were nomadic, in the early 1950s they established residence in permanent villages. Inuit are Canadian citizens, and pay all federal and provincial sales taxes as well as income tax. Currently, Inuit in this region are actively working on developing an autonomous government that will allow them to establish their own priorities. Nunavik's economy is heavily influenced by government; government operations represent more than 50% of the region's domestic product (Duhaime, 2004).

As shown in Figure 2-1, there are 14 communities in Nunavik, 7 on the Hudson coast and 7 on the Ungava coast. As shown in Table 2-1, the communities vary in size. The three largest communities are Kuujjuaq, Inukjuak and Puvirnituq. The communities are located 1,000 to 1,900 km north of Montreal (Mativik Corporation, no date). There are no road links to Nunavik from the south or between communities within the region. Air service provides links between the communities and elsewhere year round. The Makivik Corporation currently owns two airlines, First Air and Air Inuit. First Air provides passenger and cargo services between 24 northern communities with connections to Edmonton, Winnipeg, Ottawa and Montreal (First Air, 2005). Air Inuit provides scheduled, charter, cargo and emergency transportation for the region, 24 hours a day, 365 days a year (Air Inuit, 2005). Maritime service is also available in the summer and fall. However, the lack of proper port facilities affects the cost of shipping to the region (Makivik Corporation, no date).

Figure 2-1: The Nunavik Region

Map of the Nunavik Region
From Makivik Corporation. (no date). Media Centre.

The Nunavik region has the highest population growth in Canada. The population is growing at a rate that is six times higher than that in the rest of Québec (Duhaime, 2004). It is estimated that the population in the region will increase by 26.6% over the 25 year period from 2001 to 2026 (Institut de la statistique du Québec, 2005). This is approximately 1.1% growth per year. However, between 1996 and 2001, the region grew by 2.1%, with some communities (such as Akulivik, Salluit, Quaqtaq, and Tasiujaq) growing by 14% or more (George, 2002).

The Inuit population tends to be young; over 60% is under the age of 30, twice that of southern Québec (Makivik Corporation, no date). Approximately 50% of individuals are under 20 years of age; about 3% are over the age of 65 (Nunavik Regional Board of Health and Social Services, 2003). The young population can be explained, in part, by a birth rate that is two times higher than in the rest of the province (Duhaime, 2004). Life expectancy has increased considerably since the 1950s, from an average of 48 years to the current life expectancy of 62 years (Makivik Corporation, no date). However, life expectancy is lower in Nunavik than in the rest of the province. Infant mortality is high; in 1997, the infant mortality rate in the region was three times higher than in the rest of the province. Life expectancy of elderly individuals is four times less than in the rest of Québec (Duhaime, 2004).

Table 2-1: Total Population of Nunavik by Age Group (2001 Figures)[9]
Community 0-14 15-24 25-44 45-54 55-64 65+ Total
Akulivik 190 90 100 35 15 10 440
Aupaluk[10] 70 25 50 5 10 0 160
Inukjuak 470 240 325 60 55 50 1200
Ivujivik 125 45 75 25 10 10 290
Kangiqsualujjuaq 300 95 185 50 15 25 670
Kangiqsujuaq 210 100 135 35 10 0 490
Kangirsuk 175 60 115 30 20 10 410
Kuujjuaq 660 275 425 110 35 40 1565
Kuujjuarapik 180 90 150 40 20 20 500
Puvirnituq 475 240 300 95 35 35 1180
Quaqtaq 135 55 65 10 0 10 275
Salluit 415 205 255 60 35 35 1005
Tasiujaq[11] 80 40 45 5 5 5 180
Umiujaq[12] 130 55 80 30 10 5 310
Total 3615 1615 2305 590 275 255 8675

Many Inuit have low education levels, but this is changing. The federal government initially established schools in the 1950s and 1960s and the provincial government established schools in the 1960s and 1970s.[13] Since 1978, the education system has been operated by the Kativik School Board. The level of education is lower in Nunavik than in the rest of the province (Duhaime, 2004). Approximately 53% of individuals between 20 and 34 years of age in Nunavik do not have a secondary school diploma. Provincially, only 16% of individuals in this age range do not have a secondary school diploma (Duhaime, 2004).

Students are taught in Inuktitut until Grade 3 at which time they choose a second language. The Inuit language and culture are taught through primary and secondary school (Mativik Corporation, no date). Inuktitut is the most commonly spoken language (over 95% of Inuit can communicate in Inuktitut). English is used in practice most often primarily because of the federal government's long involvement in administrative matters.

A large number of residents in the region are part of the labour market (Duhaime, 2004). This is, in part, due to the fact that the population is relatively young. It is estimated that approximately 73% of individuals 25 to 64 years are employed (Institut de la statistique du Québec, 2005; 2002 figures). Despite efforts to earn a living, individuals in Nunavik earn less than other Québecers. The level of personal income per capita is also lower in Nunavik than it is in the Yukon, the Northwest Territories or Nunavut (Duhaime, 2004). Working individuals tend to support a high number of dependents; on average, families in Nunavik are larger than families elsewhere in Québec (Duhaime, 2004). In addition, the cost of home and personal care products, food, gasoline, vehicles and hunting and fishing equipment are higher in Nunavik than in the rest of Québec (Duhaime, 2004). This is due, at least in part, to limited transportation options.

Day-to-day expenses of home owners in Nunavik are higher than those of home owners in other parts of Québec. It is estimated that average monthly payments for owner-occupied dwellings is approximately $1,295 in Nunavik, and $706 in the rest of Québec. Over 97% of the dwellings in the region are rented. Although social housing is less expensive in Nunavik than in the rest of the province (average gross monthly payments for rented dwellings are $255 and $529, for Nunavik and Québec, respectively), dwellings are overcrowded. The region does not have a private housing market that can help relieve the shortage (Duhaime, 2004).

Per capita health care costs are, on average, higher in Nunavik then elsewhere in Québec (Duhaime, 2004).[14] It is estimated (based on 2004 figures) that public spending on health in Nunavik is approximately $57 million compared to approximately $17 billion for Québec as a whole. Public spending on health per capita is estimated to be $5,940 for Nunavik and $2,376 for Québec (Duhaime, 2004). As discussed in more detail below, the Nunavik Region has two health centres and a nursing station in every community. The higher costs and the number of health care facilities does not, however, mean that health levels are better than in other regions in Québec (Duhaime, 2004).

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2.5 The Nunavik Regional Board of Health and Social Services[15]

Created in 1995, the Nunavik Regional Board of Health and Social Services is part of Québec's network of organizations and institutions responsible for population health and well-being. Its primary role is to improve the well-being of the entire Nunavik population by organizing health and social service programs in the region, evaluating the efficiency of the programs and ensuring users receive good quality services that are appropriate for their needs. In addition, the Board is responsible for allocating budgets to institutions in the region. The Board's major partners are the ministère de la Santé et des Services sociaux, the other regional boards of health and social services in the province, the region's two health centres, the Kativik Regional Government, the Kativik School Board and the Makivik Corporation.

The Nunavik Regional Board of Health and Social Services is administered by a board of directors which consists of representatives from each of the 14 communities in the region, as well as representatives from both health centres, the users, and the regional government. The head office of the Nunavik Regional Board of Health and Social Services is in Kuujjuaq.

The Nunavik Regional Board manages several federal programs including: Brighter Futures; Mental Health; Prenatal Nutrition; Family Violence; Home and Community Care; Diabetes Prevention and Management; and Contaminants, Nutrition and Health.

2.6 The Study Communities

2.6.1 Kuujjuaq

Kuujjuaq means "the great river". The community developed at its present site between 1941 and 1945. Since the signing of the James Bay and Northern Québec Agreement, Kuujjuaq has been the administrative centre of Nunavik. The Inuit population was estimated to be 1,687 as of December 31, 2004 (INAC, 2005).

The community has two schools -- an elementary school and a high school. Community services include a church, a youth centre, a community centre, an outdoor skating rink, a fire station, a police station and a community radio station (INAC, 2005). In addition, there is a 500 seat conference centre, two three-star hotels, several restaurants, a bar with a dance floor and several stores and shops (Northern Village of Kuujjuaq, no date).

Electricity is supplied to the community via diesel generators. The water supply consists of household supply, a reservoir and water treatment. Sewers collect waste water. Municipal garbage collection is available. There are approximately 317 housing units (INAC, 2005).

The Ungava Tulattavik Health Centre is located in Kuujjuaq. The health centre serves several roles and offers services normally provided by local community service centres (CLSCs)[16], child and youth protection centres (CPEJs)[17], short-term hospital centres (CHs)[18], extended care residential hospital centres (CHSLDs)[19] and rehabilitation centres for youths with adjustment difficulties (CRJDAs)[20]. The centre serves approximately 4,444 people in Kuujjuaq and on the Ungava coast. The centre has 15 short term (acute care) beds and 10 long term (extended care) beds.

The primary services offered by the centre include: general medicine (consultation, emergency and hospitalization); maternity; outpatient surgery; community services (including home care, social services and mental health); physiotherapy/occupational therapy; dentistry; laboratory; radiology; electrocardiography; electroencephalography; pharmacy; a group home; residential services; child and youth protection; and archives. Professional resources include: 7 general practitioners; 12 nurses; 1 internist; 2 psychiatrists (1 for adults and 1 for children); 2 physiotherapy technicians; 3 medical technologists; 2 radiology technicians; 1 pharmacist; 1 dentist; and 1 dental technician (Nunavik Regional Board of Health and Social Services, 2003).

Visiting specialists include: anaesthesists; cardiologists (for adults and children); plastic surgeons; gastro-enterologists; gynaecologists; ear/nose/throat specialists; pediatricians; psychiatrists (for both children and adults); physiotherapists and technicians; occupational therapists and technicians; audiologists; ophthalmologists; orthodontists; and prosthetist-orthotists. Services provided by visiting resources include: audiology; denture therapy; electroencephalography; optometry; orthodontics, and hearing aids.

Both the professionals from the health centre and the visiting specialists travel to the various communities on the Ungava coast.

2.6.2 Puvirnituq

Purvirnituq means "smell of rotten meat". The community was developed in 1952 and incorporated in 1989. Originally, the community refused to sign the James Bay and Northern Québec Agreement. The Inuit population was estimated to be 1,410 as of December 31, 2004 (INAC, 2005).

The community has one school that provides preschool, elementary and secondary level activities. Community services include a library, two churches, a youth centre, a community centre, an outdoor skating rink, a fire station, a police station and a community radio station (INAC, 2005). In addition, there is a hotel, a museum and two stores. Traditional activities, such as seal hunting, fishing, and the hunting of migratory birds remain important. (Northern Village Corporation of Puvirnituq, no date).

Electricity is supplied to the community via diesel generators. The water supply consists of household supply, a reservoir and water treatment. Sewers collect waste water. Municipal garbage collection is available. There are approximately 233 housing units (INAC, 2005).

The Inuulitsivik Health Centre is located in Puvirnituq. Like the Ungava Tulattavik Health Centre in Kuujjuaq, the Inuulitsivik Health Centre serves multiple roles. The centre serves approximately 5,593 people on the Hudson coast. The centre has 17 short term (acute care) beds and 8 long term (extended care) beds.

The primary services include: general medicine (consultation, emergency and hospitalization); maternity; community services (including home care, social services and mental health); physiotherapy/occupational therapy; dentistry; laboratory; radiology; electrocardiography; pharmacy; child and youth protection; archives; and patient services in Montreal. Professional resources include: 2 general practitioners; 12 nurses; 1 community health worker; 7 midwives; 5 maternity workers; 7 health care workers; 1 audiologist; 2 psychologists; 1 dental hygienist; 3 laboratory technicians; 1 radiology technician; 1 pharmacist; and 1 archivist (Nunavik Regional Board of Health and Social Services, 2003).

Visiting specialists include: anaesthetists; cardiologists (for adults and children); plastic surgeons; gynaecologists; internists; ophthalmologists; prosthetist-orthotists (for adults and children); ear/nose/throat specialists; pediatricians; and psychiatrists.

Both the professionals from the health centre and the visiting specialists travel to the various communities on the Hudson coast.

The Inuulitsivik Health Centre also manages a patient services unit in Montreal, the Module du Nord Québécois (Northern Québec module). The unit assumes responsibility for Inuit patients, from anywhere in Nunavik, who are transferred to the south for care and services not available in the region. The unit is responsible for all aspects of patient transfer including: transportation, escort, interpretation services, appointments and all types of support. Approximately 1,500 individuals are transferred south each year; 20% of these involve emergencies. The majority of individuals are sent to the McGill University Health Centre. Data from 2001-2002 indicated that 1,466 individuals were transferred to Montreal (61% were from the Hudson coast, 39% were from the Ungava coast). Of these, 783 individuals received care in a clinic setting and 683 were admitted to hospital. The average stay in Montreal was 15.9 days. The average stay in hospital was 10 days. Only 67% of the individuals who were transferred had an escort. Of the 1,466 individuals who were transferred to Montreal, 41% were male and 59% were female. The majority of individuals (63%) were between 18 and 64 years of age. An additional 26% were between 0 and 17 years of age and 11% were 65 years of age or older.

2.6.3 Inukjuak

Inukjuak means "the giant". Previously known as Port Harrison, the community was established about 1909. The Inuit population was estimated to be 1,375 as of December 31, 2004 (INAC, 2005).

Inukjuak has one school which provides preschool, elementary and secondary level activities. Community services include a library, a church, a youth centre, a community centre, an outdoor skating rink, a fire station, a police station and a community radio station (INAC, 2005). Inukjuak has a major arts centre. The community has several dog teams. Following a period when only snowmobiles were used, the Inuit have gone back to the traditional way (Northern Village Corporation of Inukjuak, no date).[21]

Electricity is supplied to the community via diesel generators. The water supply consists of household supply, a reservoir and water treatment. Sewers collect waste water. Municipal garbage collection is available. There are approximately 262 housing units (INAC, 2005).

A Reintegration Centre offers residential care 24 hours a day as well as external services to men and women 18 years of age or older who have been diagnosed with severe and persistent mental health problems and/or intellectual impairment. Examples of the types of mental health problems addressed include: mood disorder; anxiety disorder; schizophrenia and other psychotic disorders; and dual diagnoses (such as mental illness and substance abuse) (Asante, 2000). Entry into the program is voluntary; clients are not forced or coerced to join or follow the program. Residential services include short term placement (3 to 6 months), long term placement (1 to 2 years), short term crisis intervention (up to 1 week) and short term respite care (up to 3 months). External services include a day program and community follow-up and support.

The centre is a regional resource and is the only one of its kind in Nunavik. The goal of the centre is to enable clients to develop the necessary skills to be successfully integrated into their communities. Staff at the centre work with both clients and their families to help identify, understand and resolve problems. Services include: behavioural management; vocational training; training in activities of daily living; and enhancing the knowledge and practice of traditional skills (Asante, 2000). The centre has two full time psycho-educators, four part time educators, six on-call educators, two night guards and a coordinator (fiscal 2000 staffing levels; Asante, 2000). The psycho-educators conduct psychosocial needs assessments, arrange for periodic evaluations of client medication and assist in the development and implementation of client treatment plans. The educators encourage clients to learn various skills and support clients in complying with their medication. The night guards ensure that clients and the facility are safe and secure overnight. The coordinator is responsible for the overall functioning of the centre (Asante, 2000).

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2.7 Continuing Care in Nunavik

2.7.1 Home Care

Home care services have been in place in the region since 2002. The number of recipients doubled between 2002/2003 and 2003/2004 (Nunavik Regional Board of Health and Social Services, 2004). Table 2-2 presents the distribution of home care users by gender and age group for 2003/2004 for each of the communities in the region. As shown in the table, across the region, 43.8% of those receiving home care services are male and 56.2% are female. Overall, approximately 9.3% of home care users are children (0 - 17 years of age), 46.2% are adults (18 - 64 years of age), and 44.5% are seniors (65 years of age and older). Approximately 37% of those using home care services live in the three study communities. For these three communities, 47.2% of those using home care services are male and 54.9% are female. In the three study communities, approximately 11% of home care users are children, 33.3% are adults and 57.7% are seniors. It is noted that of the 78 individuals who were enrolled and eligible for services did not receive services in 2003/2004. Thus, 587 individuals received home support services in 2003/2004 (Nunavik Regional Board of Health and Social Services, 2004).

In 2004/2005, a total of 603 individuals received home support services. The clients were distributed as follows: 82 children (0 to 17 years of age; 13.6%); 256 individuals 18 to 64 years of age (42.5%); and 265 individuals 65 years of age and older (43.9%) (Nunavik Regional Board of Health and Social Services, 2005). While the total number of clients was approximately the same in 2003/2004 and 2004/2005, the number of children aged 0 to 5 years receiving home care services doubled in 2004/2005.

Table 2-2: Home Support Service Users by Gender and Age Group (2003/2004)
Community Male Female 0-5 6-17 18-64 65-69 70-79 80+ Total
Akulivik 14 13 2 1 14 5 3 2 27
Aupaluk 1 2 0 0 3 0 0 0 3
Inukjuaq 34 63 2 9 26 27 29 4 97
Ivujivik 4 13 0 0 7 5 5 0 17
Kangiqsualujjuaq 36 31 0 5 46 6 9 3 69
Kangiqsujuaq 8 22 0 1 18 2 6 3 30
Kangirsuk 30 38 0 6 41 8 9 2 66
Kuujjuaq 40 40 4 4 38 12 14 8 80
Kuujjuaraapik 24 37 1 3 28 13 15 1 61
Puvirnituq 42 32 4 4 18 15 28 5 74
Quaqtaq 13 29 2 3 22 7 8 0 42
Salluit 27 24 3 1 14 15 17 1 51
Tasiujaq 13 22 4 3 24 2 1 1 35
Umiujaq 5 8 0 0 8 0 3 2 13
Total 291 374 22 40 307 117 147 32 665

Nunavik Regional Board of Health and Social Services, 2004

Table 2-3 presents the distribution of home care users by diagnostic category for the region as a whole and for the three study communities for 2003/2004. In the region overall, the most commonly occurring conditions were cardiac conditions (24.1%), nutritional conditions (10.8%), diabetes and diabetes related conditions (10.4%) and mental health conditions (10.3%). In the three study communities, the most commonly occurring conditions were cardiac conditions (21.3%), mental health conditions (12.2%), respiratory conditions (10.9%) and nutritional conditions (10.0%).

Table 2-3: Home Support Service Users by Diagnostic Category (2003/2004) [22]
Diagnostic Category Nunavik Region Three Study Communities
Total Percentage Total Percentage
Cardiac condition [23] 148 24.1 49 21.3
Respiratory conditions 53 8.6 25 10.9
Diabetes and diabetes-related conditions [24] 64 10.4 9 3.9
Nutritional conditions [25] 66 10.8 23 10.0
Cerebrovascular conditions [26] 25 4.1 11 4.8
Sensory conditions [27] 10 1.6 9 3.9
Nervous system disorders 14 2.3 6 2.6
Other physical conditions [28] 73 11.9 36 15.7
Accident victim 9 1.5 2 0.9
Cancer 24 3.9 10 4.3
Autoimmune disorders [29] 6 1.0 0 0.0
Mental health conditions [30] 63 10.3 28 12.2
Other 58 9.5 22 9.7
Total [31] 613 100 230 100

Nunavik Regional Board of Health and Social Services, 2004

Table 2-4 presents the number of hours of service by community. As shown in the table, a total of 45,949 hours of service and 6,085 visits were provided in 2003/2004. It was estimated that a further 6,125 hours of service were not provided in 2003/2004 primarily because of a lack of financial and human resources (Nunavik Regional Board of Health and Social Services, 2004). The total hours of service provided in 2003/2004 were 2.75 times higher than the total hours of service provided in 2002/2003 (in 2002/2003, 16,573 hours of service were provided). A total of 18,016 hours of service, representing 39.2% of the total, were provided in the three study communities in 2003/2004. In 2004/2005, a total of 39,325 hours of home care services were provided (Nunavik Regional Board of Health and Social Services, 2005). Of these, 8,794 hours were provided by home care workers, an additional 28,470 hours were provided by nurses (Nunavik Regional Board of Health and Social Services, 2005).[32]

Table 2-4: Home Support Service Hours by Community (2003/2004)
Community Home Support Service Hours
Akulivik 1,050
Aupaluk 460
Inukjuaq 8,178
Ivujivik 903
Kangiqsualujjuaq 5,398
Kangiqsujuaq 2,226
Kangirsuk 3,217
Kuujjuaq 3,151
Kuujjuaraapik 921
Puvirnituq 6,687
Quaqtaq 1,650
Salluit 9,858
Tasiujaq 1,495
Umiujaq 755
Total 45,949

Nunavik Regional Board of Health and Social Services, 2004

In 2003/2004, 34 individuals (14 males, 20 females) received more than 300 hours of service. These individuals were distributed as follows: 5 children, 12 adults, and 17 seniors. Together, these individuals received 20,563 hours of service. Palliative care services were provided to 22 individuals, for a total of 2,525 hours of service (1,872 hours were provided to 3 people; Nunavik Regional Board of Health and Social Services, 2004). In 2004/2005, six individuals received a total of 3,567 hours; five individuals received a total of 2,322 hours and one individual received a total of 1,245 hours.

Health Canada, through the Home and Community Care Program, provides funding for two home care coordinators, six nurses and three rehabilitation technicians. It also covers medical and technical aids and 40% of the cost of the home care workers' training (additional funding for the home care workers' training is provided by the Kativik Regional Government; Nunavik Regional Board of Health and Social Services, 2005). Complementary services and essential policy components, such as support for activities of daily living, respite care, rehabilitation services, psychosocial services, and interpretation services, are funded by the Québec Ministry of Health and Social Services. In order to offer essential services, the health centres have operated in a deficit situation (Nunavik Regional Board of Health and Social Services, 2004).[33]

2.7.2 Day Centre

A day centre opened in Kuujjuaq in April 2004. The centre, which involves a partnership between the Nunavik Regional Board of Health and Social Services, the Ungava Tulattavik Health Centre and the municipality of Kuujjuaq, provides seniors with transportation services, hot lunches, organized activities and socialization activities five days a week. Celebrations for special occasions are also organized (Nunavik Board of Health and Social Services, 2005).

2.7.3 Facility Care

As noted above, 10 long term care beds are available in Kuujjuaq, 8 long term care beds are available in Puvirnituq and 8 beds for individuals with mental health problems and/or intellectual impairment are available in Inukjuak.

3. Methodology

3.1 Selection of the Study Communities

As noted above, the study was conducted in three Inuit communities in Nunavik: Kuujjuaq, Purvirnituq, and Inukjuak. Initially, Kuujjuaq was chosen as the Inuit study community for the Continuing Care Research and Costing Project. When the study was changed from one study with eight sites to three studies with three to four sites each, Purvirnituq was added as it offered continuing care services that were similar to those available in Kuujjuaq. Inukjuak was added as it has several children with special needs as well as adults with mental health needs.

The study representative from the Nunavik Regional Board of Health and Social Services discussed the study with the executive directors of the health centres in Kuujjuaq and Purvirnituq and with the director of the Reintegration Centre in Inukjuak prior to presenting it to the Executive of the Nunavik Regional Health and Social Services Board. The presentations to the directors of the three facilities included discussions regarding: the importance of the study; the anticipated timing for data collection; what assistance might be required from the organizations with respect to access to clients and identification of potential interviewers; other assistance the organizations could provide; and any concerns the organizations had regarding participation. The study was well received by each of the centres.

The study representative from the Nunavik Regional Board of Health and Social Services presented the study to the Executive of the Regional Health and Social Services Board in June 2005.[34] As a result, the Board passed a resolution indicating support for the study; a copy of the resolution is provided in Appendix A.[35] It was felt by the study representative that this was sufficient. Therefore, permission was not sought from each of the study communities individually. In addition, while an Information and Data Sharing Agreement had been drafted for use in the region, this was not taken to the Board for feedback and approval. The draft Information and Data Sharing Agreement is presented in Appendix B.

3.2 Sample

3.2.1 Introduction

The focus of the Continuing Care Research and Costing Project was on individuals who do not have, or who have lost, some capacity to care for themselves. These individuals included: seniors; adults with chronic diseases or conditions; adults with mental health needs; and children with special needs. For the purposes of this study, seniors were defined as being individuals 55 years of age and older who are unable to care for themselves because of a physical disease or condition or because of a mental health condition. Adults with chronic diseases or conditions were defined as being individuals between 18 and 54 years of age who were unable to care for themselves completely because of a chronic disease or condition which affects their ability to function physically. Adults with mental health needs were defined as being individuals between 18 and 54 years of age who were unable to care for themselves completely because of a chronic condition that affects their ability to function mentally and/or cognitively. Children with special needs were defined as being individuals between 0 and 17 years of age who should chronologically be able to care for themselves, but who are unable to do so completely because of a chronic disease or condition that has affected their ability to function physically, mentally, and/or cognitively. A more complete definition of each of the study groups is included in Appendix C.

3.2.2 Identification of the Inuit Client Sample

For the Inuit study sites, the client target sample was 90 individuals, 30 from each of the three study communities; the sample size was affected by the amount of funding available for the study, but was double what had initially been envisioned. Individuals receiving continuing care services at home as well as those receiving services in a facility were to be included.

For the potential facility sample, an attempt was made to include all of the individuals living in the facilities in the study communities. In Kuujjuaq, the facilities included the elders home as well as the chronic care wing of the hospital; a total of 10 individuals were identified. The facility in Puvirnituq was the chronic care wing of the hospital; a total of 8 individuals were identified. In Inukjuak, the facility was the Reintegration Centre; a total of 8 individuals were identified.

For the potential home sample, individuals who were identified as receiving continuing care services within each of the study communities were randomly selected.[36] Initially, a random sample of 50 individuals was drawn for each community.[37] Individuals who appeared more than once on the list were removed.

Once the potential home and facility samples were identified, the lists were reviewed by knowledgeable individuals within each of the study communities (generally, individuals working with the Persons Lacking Autonomy program or the head nurse at the hospital) to ensure that clients were alive, living in the community, and physically and psychologically well enough to participate in the study.[38]

After the lists were reviewed, the potential sample consisted of 114 individuals who were receiving continuing care services at home and 22 individuals who were receiving continuing care services in a facility. The potential home sample represented 38.5% of the individuals in the three study communities who were receiving continuing care services at home. The potential facility sample represented 84.6% of the individuals in the three study communities who were receiving continuing care services in a facility.

As noted above, the goal was to interview 30 individuals per community. Within each study community, the number of home care clients contacted depended on the number of facility clients who participated. Individuals who were receiving services at home and who refused to participate in the study were usually replaced. All of the facility clients participated; that is, 22 individuals comprised the facility sample (9, 8, and 5 from Kuujjuaq, Puvirnituq and Inukjuak, respectively). The number of identified home care clients were 21, 22, and 25 for Kuujjuaq, Purvinituq and Inukjuak, respectively. However, due to a large number of refusals in Kuujjuaq near the end of the study, as well as a desire on the part of the interviewers in Kuujjuaq to be finished with the study only 10 of the 21 individuals from Kuujjuaq participated in the study (all of the individuals from Purvinituq and Inukjuak participated). The final home sample consisted of 57 individuals.

3.2.3 Identification of the Inuit Caregiver Sample

One of the questions of interest in this study was the extent to which informal caregivers were providing care and support to individuals requiring continuing care services, regardless of whether they were receiving the services at home or in a facility. It was noted relatively early in the research project by the members of the various project advisory groups that the term "informal caregiver", which is commonly used in the non-Aboriginal literature to refer to unpaid family members, friends, and others who provide care and assistance, was not appropriate. In Inuit and First Nations communities, family members as well as other members of the community may provide assistance to someone needing care and/or support. The term "unpaid caregiver" was also not considered appropriate as, at least in some First Nation communities, family members may be paid to provide care to an individual requiring assistance.[39] After some discussion, it was decided that the term "family caregiver" would be used to identify family, friends, and volunteers who provided assistance to individuals requiring continuing care services.

Caregivers were identified for clients who participated in the study. Where possible, clients were asked to identify a family caregiver who provided him/her with care and/or support. The majority of the clients did not identify a family caregiver. Of the 57 clients living at home, 20 (35.1%) indicated they had a family caregiver. Of the 22 clients living in a facility, 1 (4.5%) indicated he/she had a family caregiver. In some cases, paid health care workers were identified as being the caregiver. Ultimately, 38 caregivers participated in the study. All of the family caregivers (14) provided care to clients receiving services at home. All but two of the 24 paid health care workers provided care to clients receiving services in a facility. Thus, of the 57 clients who were receiving services at home, 16 (28.1%) had either a family or a formal caregiver.[40] Of the 22 clients who were receiving services in a facility, all had a formal caregiver.


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3.3 Research Tools

3.3.1 Introduction

Several research tools were created for the project. These included consent forms for both clients and caregivers, a Client Interview, and a Caregiver Interview. In addition, a measure of functional status was adapted for use in the study. All of the materials, with the exception of the functional status measure, were drafted by Hollander Analytical Services using materials from the literature, from other work done by Hollander Analytical Services, and from discussions with the regional advisory groups for the project. The draft materials were reviewed and discussed by representatives from the three study regions (Manitoba, Québec and Nunavik). Based on these discussions, a core set of questions, which was used by all three study regions, was identified. In some cases, the wording of the core questions was modified to meet the needs of a specific region. The question was still considered core if the concept was the same, regardless of the exact wording that was used.[41] In addition, the study regions were able to add region specific questions to the tools.

The tools used in the Inuit study region are described in more detail below. Both core and region specific questions are identified. A copy of all of the tools used in the Inuit study region are presented in Appendix D.

3.3.2 Consent Forms Used in the Inuit Study Sites

As noted earlier, the study included several groups of clients: children, individuals with physical conditions, and individuals with mental health conditions or cognitive impairments. As a result, three client consent forms were created: one for adults who were capable of providing consent on their own behalf (the Adult Participant Consent Form); one for proxies to complete on behalf of adults who were not capable of providing consent (the Proxy Participant Consent Form); and one for parents/guardians to complete on behalf of children (the Child Participant Consent Form).

The general content of each of these consent forms was the same and included: information regarding the purpose of the study; what the study involved; anticipated risks, discomforts, benefits and costs; confidentiality issues regarding the information collected; the right to withdraw from the study without penalty; and contact information for individuals who had questions. These consent forms were only available in English. Therefore, the interviewer generally had to translate and present the content verbally in Inuktitut.

Once a client, proxy or parent had agreed to have the identified individual participate in the study, he/she was asked to sign a General Consent form indicating what he/she was granting permission for (for example, to participate in the study only, or to have the interviewer contact a family caregiver). The General Consent form was available in both English and Inuktitut. The interviewer also signed this form indicating that he/she felt the client, proxy or parent understood what the study involved. A copy of the appropriate consent form and the General Consent form were left with the client/proxy/parent if he/she wished.[42]

A consent form was also created for use with caregivers. This form was similar to the consent forms used for clients, but also indicated that they were being asked to participate because it was understood they provided care and/or support to someone who had participated in the study. Again, this form was only available in English. It was translated by the interviewer, as required. Once a caregiver had agreed to participate in the study, he/she was asked to sign the Caregiver Consent Form. The Caregiver Consent Form was available in both English and Inuktitut. The interviewer also signed this form indicating that he/she felt the caregiver understood what the study involved. A copy of the consent form was left with the caregiver if he/she wished. [43]

3.3.3 Client Interview Tool Used in the Inuit Study Sites

The Client Interview tool was used to gather information regarding clients who were receiving continuing care services either at home or in a facility. The same interview tool was used for both groups of clients. Instructions were included throughout the tool to assist the interviewer with gathering relevant information.

The first page of the interview tool was used to identify the community the client was from, the client, the interviewer, and the language(s) used to conduct the interview. This page also allowed the interviewer to comment on the interview and/or the client's situation. The second page of the interview tool asked who provided the information on the tool; this was used to determine if someone other than the client (that is, a proxy) was used to answer some of the questions. This page also requested information regarding where the client was living (that is, at home or in a facility). The main part of the Client Interview consisted of several sections which addressed: client demographics; housing; use of health related services; satisfaction with health related services; preferences for where services should be provided; and perceptions of one's health and quality of life. The content of each of these sections is described in more detail below.

Section A: Demographics. The demographics section requested information regarding: the client's gender; his/her age; the language(s) the client can speak; the language(s) the client can understand; the language the client uses most often in daily life; the client's education level; whether the client is currently working for pay and if so, how many hours a week he/she works; the client's sources of income over the past year; and the number of people living in the household. No information was gathered regarding the client's marital status as this was not considered appropriate for First Nations and Inuit clients. All of the demographic questions were used in all three study regions, although some of them (for example, the questions on language) were modified to be appropriate for the specific study region.

In order to assist with protecting the identity of study participants, age categories, rather than age, or date of birth, were used.[44] The age groupings were as follows: 0 to 17 (to identify children with special needs); 18 to 24, 25 to 34, 35 to 44, and 45 to 54 (to identify adults with physical and mental health conditions); and 55 to 64, 65 to 74 and 75 and up (to identify seniors). These groups were similar to those used on the First Nations and Inuit Regional Longitudinal Health Survey (2002).

For the three language questions, the choices on the Client Interview used in the Inuit study communities were: English, French, Inuktitut and Other.

For the question regarding the client's educational level, the choices were: No formal schooling; Kindergarten to Grade 3; Grades 4 to 7; Some High School (defined as Grades 8 to 12); High School Graduate (defined as having completed Grade 12); Some technical school, trade school, college or university; Completed bachelor's degree or equivalent (including a diploma or certificate from a technical or trade school); Completed graduate degree or equivalent (including a Master's degree, PhD, or MD); and Other. For the Inuit, it was recognized that some individuals may not have received any formal schooling, but may have been self-taught; interviewers were instructed to include this information under Other.

The choices for the question on sources of income were identical to those on the First Nations and Inuit Regional Longitudinal Health Survey (2002). In order to obtain as complete a picture of sources of income as possible, interviewers were instructed to ask a general question regarding sources of income over the past year and then to read out any choices that the respondent did not identify.

Section B: Housing for Those at Home. This section contained several questions designed to address the housing situation for clients receiving services at home (the housing situation for clients receiving services in a facility were addressed in Section C). Information was requested regarding: ownership of the home; the age of the home; the number of rooms in the home; resources available in the home; the need for repairs; the need for and types of modifications made because of the client's physical condition or health problem; the presence of mold and mildew; and the safety of the main water supply in the home. Although all of the questions in this section were used in all three study regions, some of them (for example, ownership of the home) were modified to be appropriate for the specific study region.

For the Inuit, the choices for ownership of the home included: rented by the client or another member of his/her household; owned by the client or another member of his/her household; owned by the Kativik Municipal Housing Corporation; and Other.

The question regarding the number of rooms in the home was similar to one included on the First Nations and Inuit Regional Longitudinal Health Survey (2002).

The question on the resources available in the home was similar to one included on the First Nations and Inuit Regional Longitudinal Health Survey (2002). The question asked about the availability of: a fridge; a stove for cooking; electricity; water delivery; cold and hot running water; a flush toilet; a septic/sewage system; garbage collection service; a heating system; a telephone; and an external sidewalk. It was noted by the Inuit representatives that most communities in the Nunavik region have water delivery and few have external sidewalks.

The question regarding the need for repairs was taken from the First Nations and Inuit Regional Longitudinal Health Survey (2002). Repairs were defined as "fixing what is already present". Clients were asked about the need for major and minor repairs and regular maintenance. Major repairs included defective plumbing or electrical wiring and structural repairs to walls, floors and ceilings. Minor repairs included missing or loose floor tiles, bricks or shingles and defective steps, railings and sidings. Regular maintenance included painting and furnace cleaning.

Three questions were asked regarding the need for modifications to the home because of the client's physical condition or health problem: are or were modifications required; what modifications were made (if required); and, if modifications are required but have not been made, why have they not been made. Modifications were defined as "changes to what is already present because of a physical condition or health problem." For the Inuit study sites, the choices for the last question were: Cost; No one to do the work; Just haven't gotten around to it; (Modifications) refused by the Kativik Municipal Housing Corporation; and Other.

The questions regarding mold and mildew and the safety of the main water supply were adapted from the First Nations and Inuit Regional Longitudinal Health Survey (2002).

Section C: Housing for Those in a Facility. This section contained several questions designed to address the housing situation for clients receiving services in a facility (the housing situation for clients receiving services in a home were addressed in Section B; see above). Information was requested regarding: whether the client shared his/her room with another individual and if so, what his/her relationship is to that person; whether the client's spouse or another relative also lived in the facility; whether the client's room was in need of repairs, improvements and/or modifications; whether the client's room and the facility were considered to be safe; the client's perceptions of different aspects of the facility; and whether the client would recommend the facility to others. The majority of the questions in this section, particularly those regarding different aspects of the facility, were developed specifically for this study by members of the Manitoba Regional Advisory Group. Some of the questions were similar to those asked in Section B. The majority of the questions in this section were used by all three study regions although some were modified for the specific study region.

The question regarding the need for repairs was identical to that used for clients receiving services at home. The question regarding the need for improvements was developed specifically for this study. For the Inuit study sites, the question asked about the need for improvement in, and the type of improvement required (if needed), with regard to: air circulation; lighting; mirrors; taps; temperature control; room size; noise level; and floors. For the Inuit study sites, the question regarding the need for modifications asked about the need for modifications, and the type of improvement required (if needed), with regard to: width of doorways; size of bathroom; handrails; toilet height or location; bathtub type, size or location; room size; and more space generally. Modifications were defined as in Section B. As in Section B, if modifications had been made, clients were asked what these were. If modifications were required, but had not been made, clients were asked why the modifications had not been made. The choices for this question were the same as in Section B.

Five items addressed client's perceptions of different aspects of the facility. These questions were developed specifically for this study. For the Inuit study sites, one question asked clients to rate the different departments in the facility (that is, nursing, dietary, housekeeping, laundry, maintenance, social activities and administration) using a four point scale (Poor, Fair, Good, Excellent). A second question asked clients to rate the staff in the facility with regard to courtesy, friendliness, helpfulness and professionalism using the same four point scale. A third question asked clients to rate various resources (food, facilities, services, activities, safety, external sidewalks, staff and visitors) using the four point scale. The fourth question asked clients about their understanding of the resident contribution/rent. The final question asked clients whether the facility should offer more services, and if so, what these should be.

Section D: Use of Health Related Services. This section included several questions regarding the type of assistance the client receives from both family caregivers and the formal care system. As noted earlier, a family caregiver was defined as a family member, a friend, a neighbour, or any other individual who provided care and/or support to the client. Individuals who provide care arranged through the formal care system are not considered family caregivers. The questions in this section addressed: whether the client had a family caregiver and if so, what his/her relationship was to that caregiver; how long the client had been receiving help/support from the family caregiver (if applicable); whether the client had recently lost someone who used to provide him/her with care and/or support and if so, who is helping the client now; how far away the family caregiver lived from the client (if applicable); the type of assistance the client receives because of his/her physical condition or health problem; and who provides assistance. Many of the questions in this section were adapted from Hollander, Chappell, Havens, McWilliam, and Miller (2002). Some questions were developed specifically for the current study. The majority of the questions in this section were used by all three study regions, although some (such as who provided assistance) were modified for the specific study region.

The questions regarding whether the client had a family caregiver, and if so, what the relationship of the family caregiver was were adapted from the Hollander et al. (2002) study. The questions on whether the client had recently lost someone who used to provide him/her with care and support and if so, who was helping the client now were also adapted from the Hollander et al. (2002) study.

The questions regarding the length of time the client had been receiving help/support from a family caregiver and how far away the family caregiver lived from the client were developed specifically for this study. For the question regarding the length of time the client had been receiving help/support from a family caregiver, the choices were: less than one year; one to two years; more than two years but less than five years; and more than five years. For the question regarding how far away the family caregiver lives from the client, the choices were: (in) the same house; very close; (in) the same community; and far away (with estimates of time and/or distance requested).

Three questions were designed to provide information regarding the type of assistance/support the client currently receives. Together, the questions examined: what types of assistance the client receives; who provides the assistance (for example, family caregivers or formal care providers); how much assistance is provided by family caregivers because of the client's increased need for care; and how much time is provided on a weekly basis by both family caregivers and the formal care system. All of these questions were adapted from the Hollander et al. (2002) study.[45] Some of the choices in the questions (for example, the provision of traditional healers and/or traditional medicines) were developed specifically for the study. One question asked whether clients received help with several activities (including eating, personal care, communication, financial activities, housekeeping, house maintenance, mobility, nursing care, obtaining medical services and equipment, and obtaining a traditional healer and/or traditional medicines). Many of these items were similar to areas addressed in the functional status measure (see Section 3.3.4 below). Clients who indicated that they received help with one or more of the activities, were asked who provided the assistance (a family caregiver, a formal care provider, or both). If a family caregiver provided assistance, the client was asked how much assistance was provided because of the client's increased need for care.[46] A second question asked what kinds of assistance various types of family caregivers[47] provided, and how much assistance was provided in a given week. The third question asked what types of assistance various types of formal care providers offered and how much assistance was provided in a given week.[48]

Section E: Other Health Related Services. The questions in this section focused on expenditures related to supplies and equipment needed by the client because of his/her physical condition(s) or health problem(s). The questions addressed: whether supplies and equipment had been obtained, and if so, how much they had cost; whether the client had been referred to a service within and/or outside his/her community; and whether the client was satisfied with the care he/she received outside of the community (if applicable). The questions regarding supplies and equipment were adapted from Hollander et al. (2002) and Browne, Gafni, Roberts and Hoxby (1992). The questions on services were developed specifically for the study. All three study regions used the same questions, although some were modified for the specific study region.

Three questions addressed whether clients had received supplies and equipment. For the Inuit study sites, clients were asked whether they had received a number of items in the last month. These items included: wheelchair; walker; cane; dressings; syringes; pillows; ostomy supplies; diabetic foods; drugs/medications; traditional medicines; and vision care. Clients who indicated that they had received one or more of these items were asked who had covered the purchase and/or rental cost, and what the approximate cost was. The Inuit participants were asked if they (or someone else on their behalf) had purchased any supplies, aids or devices that cost less than $100 in the last month. The Inuit participants were also asked if they (or someone else on their behalf) had purchased or rented any supplies, aids or devices that cost more than $100 in the last year. If supplies and/or equipment had been purchased (or rented), participants were asked to identify the item and the approximate cost.[49]

Two questions examined whether clients had been referred to a service within the last month; one question asked about services within the community and one asked about services outside of the community. Clients who indicated that they had been referred to a service were asked how much the service had cost (regardless of whether they or a family member had paid for the service). Clients who indicated that they had been referred to a service outside of the community were asked how satisfied they were with the care they had received.

Section F: Satisfaction with Health Related Services. This section asked clients several questions regarding: the services they had received both from their family caregivers and the formal care system; their satisfaction with the services they had received from the formal care system; whether they had experienced any difficulties receiving care in the last year; and whether treatments or services had been refused (either by or on behalf of the client or by someone else). Many of the questions in this section were adapted for this study. The majority of questions were used by all three study regions. Proxies were not asked these questions.

Clients were asked several questions about the care and services they received from family caregivers. For example: "Do you receive the care/service you need often enough?" and "Do you receive care from someone you feel comfortable with?" Clients were asked a similar set of questions regarding the care and services they received from the formal care system. All of questions were developed for this study. Clients were asked to use a three point scale (Never, Sometimes, Always or Almost Always) in responding to each question.

Clients were also asked how satisfied they were with services provided through the formal care system. Satisfaction was assessed using questions that addressed clients' satisfaction with services received, worker characteristics, and care concerns. The majority of the questions were adapted from Penning and Chappell (1996).[50] Two questions were developed specifically for this study: "How often would you say that workers respect you, understand you and listen to you?" and "How often would you say that workers speak the language(s) with which you are most comfortable?" Clients were asked to use a three point scale (Never, Sometimes, Always).

Clients were asked whether they had experienced difficulties in receiving care in several areas (including transportation, access to care, medical supplies and equipment) during the past year, and if so, how often they had experienced difficulties. This question was adapted from the First Nations and Inuit Regional Longitudinal Health Survey (2002).

Clients were asked if they had refused any treatment or service in the last year. They were also asked if they had been refused any treatment or service in the last year (by someone else). If clients said "Yes" to either one or both questions, they were asked to provide a reason. These questions were developed for the current study.

Section G: (Preference for) Location of Services. This section of the Client Interview consisted of several questions regarding: clients' awareness of housing options; where clients would prefer to receive services, and who they would prefer to receive services from, if they had a choice; and what they would want to do about future needs and services. The majority of the questions were developed for the current study and were used by the three study regions. Proxies were not asked these questions.

Clients were asked if they were aware of other housing options (that is, other than the housing options available in their community). They were also asked if they felt there was a need for other housing options in their community, and if so, what these should be.

Clients were asked what kind of housing situation they would prefer, where they would like the housing to be available and who they would prefer to receive care and support from. These questions were based on a study conducted by Chapleski, Sobeck and Fisher (2003). The choices of living situation included: living in the client's own home with appropriate care and support services; living in the home of a family member; living in an assisted living situation (such as a personal care home, elders/seniors home, or group home) and living in a facility or institutional setting. Clients were asked if they prefer that the housing be available: in their own community; where services can be accessed easily (even if that meant living outside their community); and another location. Clients were also asked who they would prefer to receive care/support from: family members; friends; neighbours; the formal care system; or someone else. Clients could select more than one response for this question.

Section H: Health and Quality of Life. The questions in this section examined the client's perceptions of his/her own health and quality of life. Some of the questions in this section were developed for this study. The majority of the questions were used by all three regions. Proxies were not asked these questions.

Clients were asked what things affected their health. The choices included: diet; stress/worry; social supports; lack of proper sleep/rest; emotional well-being; lack of exercise/activity; physical, emotional, mental, and spiritual balance; and other. Clients could provide more than one response. Clients were also asked to rate their overall health using a five point scale (Excellent, Very Good, Good, Fair and Poor). These questions were adapted from the First Nations and Inuit Regional Longitudinal Health Survey (2002).

To assess perceptions of quality of life, clients were asked: "What things make you happy?", "What things make you unhappy?" and, "In general, would you say you are happy with your life?"[51] Clients in the Inuit study sites were also asked how their personal, cultural and spiritual beliefs and values influenced their health and life. This question was based on information gathered as part of the Multiclientele Assessment Tool used by the Québec Ministry of Health and Social Services.

Section I: Additional Comments. This section was included to allow clients to make any other comments about the care or services they felt they needed or received. Interviewers were instructed to follow-up on any issues that may have been raised during the interview.

3.3.4 Functional Status

In studies focusing on the provision of continuing care, it is more important to assess an individual's functional status than to determine his/her diagnoses as individuals with the same health condition (such as lung cancer) may require different continuing care services because of their different functional status. Clients' functional status was assessed using the Système de mesure de l'autonomie fonctionelle (Functional Autonomy Measurement System or SMAF) developed by Hébert, Carrier and Bilodeau (1988). The SMAF is based on the World Health Organization's (1980) classification of disabilities. The SMAF was used by the three study regions.

The SMAF consists of 29 items that measure functional abilities in five areas: activities of daily living; mobility; communication; mental functions; and instrumental activities of daily living (see Table 3-1). Each item is scored on a four to six point scale which ranges from 0 (independent) to -3 (dependent) for a maximum total score of -87. For this study, the scoring was reversed (for example, -3 was scored as 3); this did not affect the coding or interpretation. Higher scores are indicative of poorer functioning. Only the functional status component of the SMAF was used in this study; information regarding resource availability was omitted. Information regarding the use of aids and supplies (for example, incontinence pads, wheelchairs, and hearing aids) was also gathered.

Table 3-1: Functional Abilities Addressed by the SMAF
Major Area (Subscale) Activities Addressed
Activities of Daily Living Eating
Washing
Dressing
Grooming
Urinary function
Bowel function
Toileting
Mobility Transfers (bed to chair or wheelchair and vice versa) Walking inside
Installing a prosthesis or orthosis
Propelling a wheelchair inside
Negotiating stairs
Getting around outside
Communication Vision
Hearing
Speaking
Mental Functions Memory
Orientation
Comprehension
Judgment
Behaviour
Instrumental Activities of Daily Living Housekeeping
Meal preparation
Shopping
Laundry
Telephone
Transportation
Medication use
Budgeting

The SMAF was chosen as a measure of functional status for this study as it has good psychometric properties. For example, Desrosiers, Bravo Hébert and Dubuc (1995) reported test-retest and inter-rater reliabilities of .95 and .96 respectively, for the total SMAF score. Correlation coefficients were over .74 for all five subscale scores (which correspond to the five areas of function) for both types of reliability (Desrosiers et al., 1995). The SMAF total score has also been shown to account for 85% of the variance in required nursing-care time (Hébert, Dubuc, Buteau, Desrosiers, Bravo, Trottier, St-Hilaire, & Roy, 2001). The SMAF was used in other continuing care studies that examined care needs and costs for (non-Aboriginal) elderly clients living in different care settings and in different jurisdictions (see Hébert et al., 2001; Hollander et al., 2002).[52] The SMAF is part of the Multiclientele Assessment Tools used by the province of Québec to assess continuing care clients (including First Nations and Inuit clients).

The SMAF can be used with clients or other individuals who know the client well; several individuals can complete the tool. Thus, information was gathered regarding who completed the SMAF (for example, the client, a family member/caregiver, or a paid health care worker). Information was also gathered regarding the language used to administer the tool. Finally, in order to make comparisons across respondents, individuals completing the SMAF on behalf of the client were asked whether the client had refused care or services in the past year, and if so, why.

3.3.5 Caregiver Interview Tool Used in the Inuit Study Sites

The Caregiver Interview tool was used to gather information from individuals who provided care and support to the client. Although intended to be used primarily with family caregivers, this tool was used with both family caregivers and paid health care personnel. The same tool was used with caregivers of clients who were receiving services at home and with caregivers of clients who were receiving services in a facility. As with the Client Interview, instructions were included throughout the tool to assist the interviewer with gathering relevant information. Several of the questions on the Caregiver Interview were similar to questions on the Client Interview to enable comparisons to be made between clients' and caregivers' perceptions of the care and services the client needs and receives.[53]

The first page of the interview tool was used to identify the community the client was from, the caregiver, the interviewer, and the language(s) used to conduct the interview. This page also allowed the interviewer to comment on the interview and/or the caregiver's situation. The main part of the Caregiver Interview consisted of several sections which addressed: the caregiver's relationship to the client; the type of care provided; costs associated with the client's care; the caregiver's satisfaction with the services the client was receiving; the caregiver's preferences for where the client should receive services; the impact of caregiving on the caregiver; and caregiver demographics. The content of each of these sections is described in more detail below.

Section A: Provision of Assistance. This section consisted of several questions regarding the caregiver's relationship with the client as well as demands on the caregiver's time. The majority of the questions were used in the three study regions (Manitoba, Québec, and Nunavik).

Caregivers were asked how long they had been providing care and support to the client, what their relationship to the client was, and where they lived in relation to the client. The latter question was developed for this study. The other two questions were adapted from Hollander et al. (2002). The choices used in all three questions were identical to those used on the Client Interview.

Caregivers were asked if they considered themselves the client's primary family caregiver and, if not, who the primary caregiver is. The main or primary family caregiver was defined as the person who provides the client with most of the help. Caregivers were asked if anyone helps them provide care and support to the client and, if so, who provides assistance. Caregivers were also asked if they provided care to anyone else, and if so, how many other people they provided care and support for. All of these questions, except for the question regarding the number of people cared for/supported by the caregiver, were adapted from Hollander et al. (2002). The latter question was developed for this study.

Section B: Type of Care Provided. This section included three questions regarding the type of care and services provided to the client by both family caregivers and the formal care system. Together, the questions examined: what types of assistance the client receives; who provides the assistance (for example, family caregivers or formal care providers); how much assistance is provided by family caregivers because of the client's increased need for care; and how much time is provided on a weekly basis by both family caregivers and the formal care system. All were similar to questions included on the Client Interview (in Section D) and were adapted from Hollander et al. (2002).

Section C: Other Health Related Services. The questions in this section focused on expenditures related to supplies and equipment needed by the client because of his/her physical condition or health problem. The questions addressed: whether supplies and equipment had been obtained, and if so, how much they had cost; whether the client had been referred to a service within and/or outside his/her community; and whether the caregiver was satisfied with the care he/she received outside of the community (if applicable). All were similar to questions included on the Client Interview (in Section E). The questions regarding supplies and equipment were adapted from Hollander et al. (2002) and Browne, Gafni, Roberts and Hoxby (1992). The questions on services were developed specifically for the current study.

Section D: Satisfaction with Health Related Services. The questions in this section examined the caregiver's perceptions of the formal care services the client receives. All of the questions were similar to ones included on the Client Interview (in Section F).

Two questions addressed the caregiver's satisfaction with the formal care services the client receives. One of these questions asked about different aspects of care -- for example, "Does the client receive the care/service when he/she needs it?" This question was developed for the current study. The second question examined caregiver's satisfaction with the services the client received, the characteristics of the paid health workers that provided care to the client, and care concerns. The majority of the questions were adapted from Penning and Chappell (1996).[54] One question addressed caregiver's perceptions of whether the client had experienced any difficulties in receiving care in the past year. This question was adapted from the First Nations and Inuit Regional Longitudinal Health Survey (2002). Two questions examined whether the caregiver had refused any care or services on behalf of the client and whether the client had been refused care or services by someone else. If the caregiver responded "Yes" to either question, he/she was asked to provide an explanation. Both of these questions were developed for the study.

Section E: (Preference for) Location of Services. This section of the Caregiver Interview examined: caregivers' awareness of housing options; where caregivers would prefer clients receive services and from whom; and caregivers' preferences regarding the clients' future care and service needs. The questions in this section were similar to ones included on the Client Interview (in Section G). The questions regarding housing options and future needs were developed for this study. The questions regarding where caregivers would prefer clients receive services and from whom were based on a study by Chapleski et al. (2003).

Section F: Effects of Caregiving. The three questions in this section were intended to assess how providing care and support for the client had impacted the caregiver. One of the questions asked caregivers to identify the positive benefits of providing care to the client. A second question asked for the disadvantages of providing care.[55] The third question asked caregivers to indicate how the care and quality of life of the client could be improved. All of the questions were open-ended. The three questions were developed for this study and used by two of the study regions (Manitoba and Nunavik; the Québec region used a different set of questions to address this issue).

Section G: Demographic Information (for Caregivers). The demographics section requested information regarding the caregiver's gender; his/her age; the language(s) the caregiver can speak; the language(s) the caregiver can understand; the language the caregiver uses most often in daily life; the caregiver's education level; whether the caregiver is currently working for pay and if so, how many hours a week he/she works; the caregiver's sources of income over the past year; and the effects caregiving have had on the caregiver's living and employment situation. The wording and choices for all except the last question were similar to questions included on the Client Interview (in Section A). Many of the questions were adapted from the First Nations and Inuit Regional Longitudinal Health Survey (2002).

The question on the impact of caregiving on the caregiver's living and employment situation examined several aspects including whether the caregiver had: to change where he/she lived because of providing care to the client; take time off work to help the client receive care; and quit his/her job in order to provide care. The question was adapted from Hollander et al. (2002).

Section H: Additional Comments. This section was included to allow caregivers to make any other comments about the care or services they felt the client needed or received and/or the impact of caregiving on themselves. Interviewers were instructed to follow-up on any issues that may have been raised during the interview.


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3.4 Research Approach

Once clients were identified, they were assigned a study number and contact information was provided to an interviewer who lived in the same community. The list of clients assigned to an interviewer was reviewed by knowledgeable individuals within the community (as noted above). Individuals who were considered to be appropriate for the study (for example, in the community) were then phoned or visited in person regarding their participation in the study.

Potential participants were told that if they chose to participate, their name would be entered into a draw for $150.00. Only other participants from the same community were included in the draw, and separate draws were done for clients and caregivers from the same community.[56] If a potential participant agreed to participate, the interviewer then made arrangements to conduct the interview, generally in the client's home.

Interviews were conducted at a mutually convenient time, and were conducted during the day, in the evening and on weekends. Interviewers were instructed to conduct the interview with the client one-on-one (unless a proxy or parent was required), and to conduct the interview in a quiet location. However, given the housing situation for many of the participants, this was not always achieved. The interviewer began the client interview by reviewing the consent form and obtaining the client's written agreement to participate. The functional status measure was generally administered first (when appropriate), followed by the Client Interview. Permission to contact a (family) caregiver was requested when clients indicated that they had one. Multiple interviews were conducted with the client, if required.

If a client indicated that he/she had a caregiver, the interviewer contacted the caregiver to see if he/she was interested in participating. If the caregiver was willing to participate, the interview was set up for a mutually convenient time. Again, interviewers were instructed to conduct the interview with the caregiver one-on-one and to conduct it in a quiet location. This was not always achieved. The interviewer began the caregiver interview by reviewing the consent form and obtaining the caregiver's written agreement to participate. Only the Caregiver Interview was administered to the caregivers. Multiple interviews were conducted with the caregiver, if required.

Individuals who served as a proxy for the client (because the client did not have the ability to understand the questions, either because of a mental health/cognitive condition or because of age (for example, in the case of a child)) and as a caregiver for the client, were first asked the questions on the Client Interview then the questions on the Caregiver Interview.

3.5 Data Coding and Entry

Comprehensive data coding manuals were developed for each of the three data collection tools (the SMAF, the Client Interview, and the Caregiver Interview). This was done to ensure that the coding of information was consistent: across individuals for the same tool; across different tools for the same questions (for example, across the Client and Caregiver Interviews); and across interviewers. The coders discussed any issues that arose as a group and a consensus was reached. Decisions that affected responses on the original materials were documented (for example, Section C of the Client Interview was not to be completed for individuals who were receiving services at home. If this section was completed, all of the questions were coded as Not Applicable). Open-ended questions were initially coded verbatim, although for some questions (such as those regarding what makes an individual happy), responses were subsequently regrouped into a smaller number of categories.

For the most part, coding went smoothly. However, one area that was particularly problematic related to the identification of a family caregiver. There was a question on the Client Interview which asked "Do you have a family caregiver, that is, a family member, friend, neighbour, or other individual who provides care and/or support to you outside of the formal care system?" It was found that in some cases, clients answered "Yes" to this question but then indicated on other questions that they did not receive help from a family caregiver.[57] In other cases, clients answered "No" to this question but indicated elsewhere that they did receive help from a family caregiver. In both cases, clients were considered to have a family caregiver. As a result of this decision, it appeared that in some cases, a family caregiver should have been interviewed but was not.

As discussed below, several individuals were involved in data collection. To address quality assurance issues at the data coding and entry stages, several steps were taken. These were as follows:

  • Three coders/data entry personnel were used for all of the measures.
  • Two individuals coded the functional status measure. All of the functional status measures were data entered by a third individual who had not been involved in coding the tool.
  • Two individuals coded the Client Interview. Over 75% of the Client Interviews were data entered by someone other than the individual who had coded the tool.
  • One individual coded all of the Caregiver Interviews. All of the Caregiver Interviews were entered by someone else.
  • For all of the tools, any unusual codes were double checked and any coding errors that were noted at the time of data entry were corrected.
  • Logic checks, data entry checks and checks for coding consistency were conducted once all of the data had been entered.
  • Frequencies were run for each of the questions on each tool and unusual findings were double checked.

3.6 Data Storage and Security

A draft Information and Data Sharing Agreement was developed for the Nunavik study region. This document specified how the data were to be collected and treated by the interviewers, how it was to be treated by representatives from Hollander Analytical Services during the study, and how it was to be treated after the study. As noted above, this document was never used within the region. Nevertheless, the concepts contained within it were adhered to.

Interviewers were instructed to keep all documents in a safe location during the course of the study. They were also asked to return completed documents to the Local Project Coordinator in a sealed envelope. The Local Project Coordinator reviewed all completed interview materials for completeness and put them in sealed envelopes. The sealed envelopes were then forwarded to Hollander Analytical Services' main office in Victoria via ExpressPost.[58]

Once the packages were received in Victoria, the data were kept in a secured office. Consent forms were kept separate from completed data forms. Electronic data were stored on computers which were only accessible by personnel from Hollander Analytical Services.

At the present time, both the paper and electronic copies of the data are being maintained by Hollander Analytical Services. The Nunavik Region had initially indicated that they wished to develop a data repository. However, little has been done in this regard. All of the study materials will continue to be stored by Hollander Analytical Services until appropriate, alternative arrangements are made.


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3.7 Lessons Learned

3.7.1 Support of the Region

The support of the Nunavik Regional Board of Health and Social Services as well as the support of key individuals within each of the study communities was critical for the success of the project.

A representative from the Nunavik Regional Board of Health and Social Services participated in discussions with the Manitoba and Québec study regions regarding various aspects of the study, including: involvement of the study communities; identification of the study sample; development of the data collection tools; implementation of the study; and steps to be taken as part of completing the study. As noted in Chapter 1, when the Continuing Care Research and Costing Project changed from one study being conducted in three regions to three separate (but similar) studies, the time demands on the Nunavik representative were substantial. In addition, the representative participated in the study in addition to her other work demands (this included attendance at several face-to-face meetings outside of the region). Although the representative was always conceptually willing to assist as required, competing priorities did not always make it possible to do so. This sometimes resulted in lengthy delays in providing feedback. It is important to note that a study of this nature requires an awareness of the local situation. It also requires a relatively large amount of time. For future studies, it is therefore important to consider having an individual who is able to devote the required amount of time within his/her normal working day.

It is stressed that the primary challenge regarding the representative from the Nunavik Regional Board of Health and Social Services was competing time demands rather than a lack of willingness to provide assistance. The representative indicated that while the Public Health department within the Regional Board has participated in several studies, this has not been the case for the Planning and Programming department. The representative noted that the study had been a learning experience for her and indicated that if she were to be involved in another study, she would bring someone into the region sooner, and would be involved at an earlier stage in the development of the research tools.

The representative presented the study to key individuals within each of the study communities and to the Executive of the Nunavik Regional Board of Health and Social Services. These presentations were essential for obtaining regional support for the study, as well as for obtaining cooperation and active participation within each of the study communities. Without the support at both the regional and community levels, it would not have been possible to conduct the study. It is critical that someone who is familiar with the local communities make the initial contacts.

The Nunavik Regional Board of Health and Social Services also made a number of in-kind contributions to the study. For example, the translation of both the General and Caregiver Consent forms were done by an individual within the organization. The packages of interview materials were created by personnel within the Regional Board (this included: copying of consent forms, interview forms and other materials; collation of the materials; provision of envelopes to hold the materials; and stuffing of the envelopes). They assisted with identifying potential interviewers and contact people within each of the study communities. They also arranged transportation, lodging and meal vouchers for the Local Project Coordinator while he was in the region. The Local Project Coordinator was also provided with office space (including access to a phone and filing cabinets) within the Regional Board's building. It is estimated that approximately $12,500 in in-kind contributions was provided by the Nunavik Regional Board of Health and Social Services.

The Nunavik Regional Board of Health and Social Services also ensured that interviewers were paid in a timely manner. The Board paid the interviewers up-front and then invoiced Hollander Analytical Services for the amount. In addition, the Regional Board also covered the up-front costs associated with the incentive draws for both the clients and the caregivers. Again, Hollander Analytical Services was invoiced.

Feedback from personnel at the Nunavik Regional Board of Health and Social Services and from key organizations within each of the study communities indicated that they were happy the study was conducted and felt it had been a good experience to be involved in the study. They are looking forward to seeing the results from the study.[59] Some individuals indicated that they were not overly aware that the study was being conducted. While this could be considered a positive comment in that individuals were not negatively impacted by the study, the comment seemed to stem from the fact that the Local Project Coordinator did not always use the office available in the Regional Board's building. Some individuals indicated they would have liked to have been more involved.[60]

3.7.2 Use of a Local Project Coordinator

Because of the competing demands on the representative from the Nunavik Regional Board of Health and Social Services, and because it was felt that there was no one within the region who would be able to implement the study, it was decided that an individual from outside of the Nunavik region should be hired as the Local Project Coordinator to implement the study.[61] This had several consequences.

First, the Local Project Coordinator was hired by Hollander Analytical Services and therefore needed to meet contractual obligations with the funder (for example, receiving security clearance through the federal government). Second, due to study demands and transportation costs, the Local Project Coordinator left his home in southern Québec to live within the Nunavik region for the eight weeks required for data collection. Third, because the Local Project Coordinator did not normally reside within the region, transportation, lodging and meals needed to be arranged on his behalf. Because the communities within the region can only be accessed year round by air, the Local Project Coordinator needed to fly from one study community to another to: hire, train and support interviewers; select the client sample; and ensure that implementation of the study and data collection were proceeding as planned. The Local Project Coordinator also maintained phone contact with the interviewers in the other study communities while he was in the third community. The travel component was expensive. In addition, because of a shortage of housing within the region, lodging is often difficult to obtain and is very expensive. Both the travel and lodging aspects had substantial consequences for the study budget.

Both the Local Project Coordinator and the representative of the Nunavik Regional Board of Health and Social Services felt that the approach used in this study (for example, traveling from one community to another while continuing to support the other study communities) had worked well. A similar approach should be considered for future, multi-community studies in the region. However, study budgets would need to include adequate funding for travel and lodging.

3.7.3 Involvement of Three Study Communities

Although the study was initially intended to be conducted in only one community (Kuujjuaq), at the request of the region, two other communities were included. From a methodology perspective, this enabled the sample size to be increased and broadened, thus increasing generalizeability. It also appeared to have an impact on participation. Because of its size and location, Kuujjuaq is often identified as a study site in the region. As a result, individuals living in the community have been asked to participate in several studies, and may be experiencing "research fatigue". It also seemed that the incentive draws of $150 were not considered sufficient in Kuujjuaq (although this did not seem to be the case in the other communities).[62] In this study, research fatigue probably accounted for at least some of the refusals encountered in Kuujjuaq. The two other communities (Puvirnituq and Inukjuak) have not been involved in studies as often, and appeared to be very enthusiastic about participating in the current one. The target sample was obtained in both of these communities. As noted above, the inclusion of the three study communities also had time and cost implications as the Local Project Coordinator needed to travel between the communities.

3.7.4 Identification of the Client and Caregiver Samples

Both the potential and final facility samples were identified with the assistance of key personnel in the facilities (usually a head nurse). No difficulties were encountered with regard to the identification of the samples. Although research team members contacted the individuals living in facility settings, nurses and assistants served as interpreters and proxies for all of these individuals. It was felt that, without this assistance from the paid health care personnel, the facility clients may not have been willing to participate.[63] It was noted that paid health care personnel are sensitive to the needs of their clients and are not always willing to allow strangers to collect information regarding them. The fact that the paid health care personnel were willing to serve as proxies for the clients, and as caregivers, suggested that they felt the study was important.[64] The support of the administrative/management component of the facilities was critical for obtaining the facility sample. These organizations provided approval for the research team to enter the facilities and they provided precious, non-reimbursed staff time to the study. Without the assistance of both the administrative/management levels and the care delivery personnel, it is unlikely that a facility sample would have been obtained. This reinforces the importance of active engagement of the community in a research study of this nature.

The sample of individuals receiving services at home were identified through lists maintained within each of the study communities. While the lists seem to be reviewed regularly, some of the random numbers identified unknown individuals. It was thought that, in some cases, this may have been due to spelling errors in the individuals' names.[65] It also appeared that the lists may have included individuals who had received continuing care services in the community in the past as well as those who were currently receiving services. The review of the potential community sample appears to have gone well, as only a couple of individuals were identified at the interviewer level as being away from the community.

It is felt that some individuals may not have been identified as being family caregivers either by the clients or by the interviewers. It was noted that some individuals may not have wanted to acknowledge a loss of autonomy as they did not want to feel dependent on others. For some, an acknowledgement of a loss of autonomy may result in feeling a loss of purpose.[66] Interviewers may have accepted a client's perception of whether he/she had a family caregiver and may not always have noted that clients were receiving assistance on a regular basis.

3.7.5 The Research Tools

There did not appear to be any difficulties with the consent forms. Both the Client and Caregiver Interview tools were considered quite lengthy, particularly when they needed to be translated into Inuktitut. It had been estimated, based on the implementation of the study in the Manitoba region, that the Client Interview would take approximately one and a half hours and the Caregiver Interview would take approximately one hour. Both interviews took approximately two hours to complete in English and approximately four hours to complete in Inuktitut (as noted below, most of the Client Interviews were conducted in Inuktitut).

Some of the questions on the Client Interview did not apply that well to the Inuit. It was anticipated that this might be the case based on discussions with the Inuit study representatives prior to the implementation of the study. However, it was felt that it was important to include all of the core questions on the research tools used in each study region in order to enable comparisons across the regions. Some questions, such as the question regarding where individuals would like to receive palliative care/end-of-life services should they require them in the future, were included (even though it was thought that they may not be answered that well) because of national policy implications. It was felt that the Client Interview should have addressed why individuals are currently experiencing a loss of autonomy (that is, their diagnoses).[67]

As noted above, the Caregiver Interview was deliberately created to enable comparisons to be made between clients and caregivers. However, this may not have worked well with the Inuit, as in some cases, caregivers were present while the clients were being interviewed and were reluctant to answer the same questions the client had responded to.

Future studies focusing on the needs of clients and the impact of caregiving on family members will need to seriously consider the issues raised in this study.

4. Interviewing and Assessment Process

4.1 Recruitment and Selection of Interviewers

A brief job description was developed to assist with the recruitment and selection of interviewers (see Appendix E.) An emphasis was placed on experienced interviewers who were familiar with the study communities and who were able to communicate in both Inuktitut and English. Because it was felt that there would be very few individuals who would meet the requirements, key personnel at the health centres, at the hospitals, at the CLSCs and with the Persons Lacking Autonomy program in the three study communities (as appropriate) were asked to recommend potential interviewers.

The names of potential interviewers were submitted to the Local Project Coordinator. The Local Project Coordinator contacted each potential interviewer by phone, described the study and the roles and responsibilities of the interviewers in more detail and ascertained whether the individual was interested in working on the study. Interested individuals were then invited to attend a training session in their own community. They were also told that they would need to obtain a police security check prior to the training session.

Eleven interviewers were formally hired at the time of the training session. Interviewers were hired from the three study communities.

4.2 Training of Interviewers

All of the interviewers were required to attend a one day training session in their own community. The training sessions were conducted by the Local Project Coordinator. A training manual was created for use in these sessions (see Appendix E). The training session included discussions regarding: the purpose of the study; how to recruit clients and how to document refusals; issues to consider in conducting the interviews (for example, the importance of having a quiet location); the purpose and content of the various research tools; and what was expected with respect to completed interviews and maintaining confidentiality. Interviewers were asked to sign a contract and an Oath of Confidentiality.

Interviewers were told that they would be paid $90 per completed interview and that invoices would be paid once all of their interviews had been completed.[68] Interviewers were also paid the equivalent of one interview for attending the training session.

4.3 Support of Interviewers

The Local Project Coordinator maintained regular contact with the interviewers in each of the study communities (regardless of where he was physically located) to ensure that the work was progressing and any problems were identified and addressed. The Local Project Coordinator also spoke with the nurses in the various study communities to ensure that no issues had arisen from their perspective.

There were no major problems encountered with the interviewers in either Puvirnituq or Inukjuak. However, some of the individuals who were trained in Kuujjuaq either did not complete any interviews or completed only two or three interviews. Given the limited number of individuals available to conduct interviews in this community, this meant that the remaining individuals had to take on additional work. Given the time constraints of the study, and a relatively high client refusal rate, it was not possible to obtain the full target sample in Kuujjuak.

4.4 Challenges Related to Data Collection

With the exception of Kuujjuaq, data collection proceeded more or less as anticipated and no major problems were encountered regarding interviewer availability or client recruitment.

It was felt that hiring interviewers from within the study communities was important as they would be familiar with the clients and caregivers, and the clients and caregivers would be more comfortable providing information to a known individual rather than to a stranger. It was noted, however, that some interviewers had a tendency to answer questions on behalf of the clients and/or caregivers (that is, without asking the participants the questions), because they knew the individuals. When this occurred, the Local Project Coordinator reminded the interviewers to ask the participants all of the questions on the interview forms. He also noted that input from the interviewers could be recorded on the front page of the interview forms or on separate sheets of paper.

It was noted at the coding stage that apparent discrepancies in client and caregiver responses were generally not addressed by the interviewers. Although some discrepancies were identified during the review by the Local Project Coordinator, this was not always the case. For example, a client may have indicated that he/she did not have a family caregiver, but may also have provided perceptions regarding the care received from family members. The use of coding manuals and consistent coding rules helped to ensure that the data could be interpreted.

Both the Local Project Coordinator and the representative from the Nunavik Regional Board of Health and Social Services discussed the study experience with the interviewers at the end of the study. A relatively consistent set of topics were discussed, although a formal debriefing form was not used.[69] Interviewers generally found the study difficult and were glad when it was over. They noted that the interview tools were long and that it was sometimes difficult to interview individuals whom they knew well.

4.5 Lessons Learned

4.5.1 Police Security Checks

Obtaining police security checks for the interviewers went smoothly. A contact person within the Kativik Regional Police Department was identified for this purpose. The person knew what was required, and the research team received good cooperation and timely responses. This was important as it enabled the study to be conducted within the available time frame.

4.5.2 Use of Local Interviewers

The use of local interviewers had both advantages and disadvantages. The local interviewers knew the community, the residents, the language and culture and likely had a positive impact on participation rates. On the other hand, they sometimes knew the participants, and were reluctant to ask questions when they felt the answers were already known. Although the interviewers were all experienced having worked on other studies, it was noted that in this study, seemingly contradictory responses were not always identified and/or addressed. Finally, although key personnel within the study communities recommended potential interviewers, the behaviour of some individuals was inconsistent with the recommendations. It is recognized that the Nunavik region is still in the process of developing research capacity. As research capacity increases, these issues may become less problematic.

4.5.3 Use of a Formal Debriefing Process

While it is felt that the discussions with the interviewers highlighted all of the major issues, the use of a formal debriefing process and consistent questions may have identified additional issues that could be addressed in future studies.

5. Findings for Clients

5.1 Introduction

This chapter presents the findings from the Client Interview. The target sample is described, both in terms of demographic information and functional status. Information is provided regarding proxy data for clients who were unable to complete the interview on their own. Information is also provided on: the clients' housing situation; the availability of caregivers; clients' use of health services; clients' satisfaction with the services they currently receive; clients' perceptions of their health and quality of life; and where clients would like to receive services in the future.

5.2 Demographic Information

The target sample for each of the three study communities was 30 individuals, for a total sample size of 90. While the target was reached in both Puvirnituq and Inukjuak, only 19 interviews were completed in Kuujjuaq. Thus, the total sample size was 79. The majority of the clients (57) lived at home and comprise the "Home" sample. The remaining 22 individuals live in a facility and comprise the "Facility" sample.

As shown in Table 5-1, the majority (64.6%) of the Client Interviews were conducted in Inuktitut; most of these involved individuals living at home. An additional 16.5% of the interviews were conducted in English and 11.4% were conducted in French; most of these involved individuals living in a facility. A further 7.6% of the Client Interviews were conducted in Inuktitut and either English (83.3%) or French. In all but one case, the interviewers were able to provide any necessary translation. Approximately 66.7% of Client Interviews were completed by clients themselves; the majority of these were completed by individuals living at home. An additional 21.8% of Client Interviews were completed by paid health care personnel; all of these were completed on behalf of individuals living in a facility. Family caregivers completed 7.7% of the Client Interviews on behalf of the clients, and 3.8% of Client Interviews were completed by more than one individual. Individuals who completed the Client Interview on behalf of a client are referred to as proxies. The effect of having so many proxies is discussed in more detail below (see Section 5-4).

Table 5-1: Individuals Completing the Client Interview
Language used

Home

Facility

Total

#

%*

#

%

#

%

English

2

3.5

11

50.0

13

16.5

French

0

0.0

9

40.9

9

11.4

Inuktitut

50

87.7

1

4.5

51

64.6

More than one language

5

8.8

1

4.5

6

7.6

Total

57

100

22

100

79

100

Client Interview completed by

#

%*

#

%

#

%

Clients

51

89.4

1

4.8

52

66.7

Family caregivers

5

8.8

1

4.8

6

7.7

Paid health care personnel

0

0.0

17

81.0

17

21.8

More than one individual

1

1.8

2

9.5

3

3.8

Total

57

100

21

100

78

100

Table 5-2 provides demographic information regarding the clients. Overall, 45.6% of the sample was male; 54.4% was female. For clients receiving services at home, 43.9% were male and 56.1% were female. This is similar to what is observed for the Nunavik region as a whole. For clients receiving services in a facility setting, half were male and half were female. Figure 5-1 provides the same information in graphic form. Clients living at home were similar to clients living in a facility with respect to gender (c2 (1) = .24, ns).[70],[71]

Overall, 9.0% of the sample was between 0 and 17 years of age, 20.5% was between 18 and 34 years of age, 12.8% was between 35 and 54 years of age, 15.4% was between 55 and 64 years of age, 24.4% was between 65 and 74 years of age, and 17.9% was 75 years of age or older (see Table 5-2 and Figure 5-2). The relative proportions for the different ages groups are similar to what is observed for the Nunavik region as a whole. Approximately 50% of the individuals living in a facility setting were under the age of 35. Of the 10 individuals in this group, 3 lived in the Reintegration Centre, and 7 lived in a hospital or elders/seniors home; 2 of the individuals were children. For both of the children living in the facility, it was noted that, while their basic needs were met, they could benefit from physiotherapy, specialized education, and age-appropriate activities. It was also noted that several of the younger individuals had lived in the facility for a long time: "This person has lived in the hospital since childhood" (25 to 34 year old); "(The client) has been living in the hospital for many years as (his/her) family were unable to provide care at home" (18 to 24 year old); and "(The client) had an accident when (he/she) was nine and has lived in the hospital ever since" (18 to 24 year old). Clients living at home were similar to clients living in a facility with respect to age when children were included in the analysis (U = 435.00, ns).[72] When children were not included, the analysis indicated that clients living in a facility tended to be younger than clients living at home (U = 335.00, p < .05).

Clients were asked what languages they could speak; clients could indicate that they spoke more than one language. Overall, 88.6% of the sample could speak Inuktitut, 27.8% could speak English, 2.5% could speak French, and 2.5% could speak some other language. All but one of the individuals who spoke a language other than Inuktitut could also speak Inuktitut (for example, all of the individuals who spoke English could also speak Inuktitut). Some 10.1% of the clients were mute. Clients were also asked what languages they could understand; again, clients could indicate that they understood more than one language. Overall, 96.2% of the sample could understand Inuktitut, 36.7% could understand English, 2.5% could understand French, 2.5% could understand some other language and 2.5% were unable to understand at all. All but one of the individuals who understood a language other than Inuktitut also understood Inuktitut. The majority (86.1%) of the clients used Inuktitut most often in their daily life. These findings are consistent with information presented elsewhere (for example, Nunavik Regional Board of Health and Social Services, 2005).

Table 5-2: Description of the Client Sample

Characteristic

Home

Facility

Total

#

%

#

%

#

%

Gender

 Male

25

43.9

11

50.0

36

45.6

Female

32

56.1

11

50.0

43

54.4

Total

57

100

22

100

79

100

Age

 0-17

5

8.8

2

9.5

7

9.0
18-34

8

14.0

8

38.0

16

20.5
35-54

6

10.5

4

19.0

10

12.8
55-64

10

17.5

2

9.5

12

15.4
65-74

18

31.6

1

4.8

19

24.4
75 and older

10

17.5

4

19.0

14

17.9

Total

57

100

21

100

78 [73]

100

Language Spoken[74]

 English

15

26.3

7

31.8

22

27.8
French

1

1.8

1

4.5

2

2.5
Inuktitut

55

96.5

15

68.2

70

88.6
Other language

2

3.5

0

0.0

2

2.5
Unable to speak

0

0.0

8

36.4

8

10.1

Language Understood [75]

 English

18

31.5

11

50.0

29

36.7
French

1

1.8

1

4.5

2

2.5
Inuktitut

56

98.2

20

90.9

76

96.2
Other

2

3.5

0

0.0

2

2.5
Unable to understand

0

0.0

2

9.1

2

2.5

Language Used Most Often on a Daily Basis

English

2

3.5

0

0.0

2

2.5
French

0

0.0

0

0.0

0

0
Inuktitut

53

93.0

15

68.2

68

86.1
Use both English and Inuktitut

1

1.8

0

0.0

1

1.3
Other language

1

1.8

0

0.0

1

1.3
Unable to communicate

0

0.0

7

31.8

7

8.9

Total

57

100

22

100

79

100

Education Level

No formal schooling

31

54.4

13

61.9

44

56.4
Kindergarten to Grade 3

7

12.3

4

19.0

11

14.1
Grades 4 to 7

6

10.5

3

14.3

9

11.5
Some High School

7

12.3

1

4.8

8

10.3
High School Graduate

3

5.3

0

0.0

3

3.8
Some technical/trade school, college or university

2

3.5

0

0.0

2

2.6
University degree or equivalent [76]

1

1.8

0

0.0

1

1.3

Total

57

100

21

100

78

100

Currently Working for Pay

Yes

5

8.8

0

0.0

5

6.3
No

52

91.2

22

100

74

93.7
Total

57

100

22

100

79

100


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Figure 5-1: Home and Facility Clients by Gender

Figure 5-1: Home and Facility Clients by Gender

Figure 5-2: Home and Facility Clients by Age

Figure 5-2: Home and Facility Clients by Age

Overall, 56.4% of the clients had no formal schooling, 25.6% had some elementary school (Kindergarten to Grade 7), and 10.3% had some high school (Grades 8 to 12). Only 3.8% had graduated from high school and 3.9% had some post-secondary education. These findings are consistent with what has been reported for the Nunavik region as a whole.

The majority (93.7%) of clients indicated that they were not currently working for pay. While it may be expected that individuals living in a facility setting would not be working, and that individuals over the age of 65 may not be working, only 5 of the 24 individuals under the age of 65 living at home indicated that they were working. Of these, two individuals indicated that they worked less than 5 hours per week, one individual worked 20 hours per week and two individuals worked 35 to 40 hours per week.

Clients were asked about their sources of income over the past year; clients could indicate that they received income from more than one source. As indicated in Table 5-3, the majority of clients received income from Old Age Pensions, Guaranteed Income Supplements and Social Assistance. The Other sources of income indicated in the table included Youth Protection, Widower Pension and Co-op Membership funds.

Table 5-3: Sources of Income

Source of Income

Home

Facility

Total

#

%

#

%

#

%

Employment (including paid employment and
self-employment)

5

8.9

0

0.0

5

6.4

Employment Insurance

4

7.1

0

0.0

4

5.1

Social Assistance

6

10.7

12

54.5

18

23.1

Old Age Pension

31

55.4

6

27.3

38

48.7

Canada or Québec Pension Plan Benefits

7

12.5

3

13.6

10

12.8

Guaranteed Income Supplement or Spouse's Allowance

14

25.0

6

27.3

20

25.6

Retirement, Pensions, Superannuation, Annuities

3

5.4

0

0.0

3

3.8

Child Tax Benefit

12

21.4

2

9.1

14

17.9

Child Support and/or Alimony

1

1.8

0

0.0

1

1.3

Workers' Compensation

5

8.9

0

0.0

5

6.4

Disability Allowance

7

12.5

1

4.5

8

10.3

Other

6

10.7

1

4.5

7

9.0

Total number of individuals

56

N/A

22

N/A

78

N/A

Note: Percentages are based on the number of individuals in each group who provided information regarding their income. Individuals could provide multiple responses.

As noted previously, the study was conducted in three communities. Because of the small sample size, the fact that many of the individuals in Kuujjuaq were living in a facility, and the three communities were not expected to differ from one another, the findings reported above are based on the entire sample. In order to obtain a complete picture, however, analyses were conducted to determine if the three communities differed with respect to gender, age and education level.[77] The findings are shown in Figures 5-3, 5-4 and 5-5; all figures include the children. The findings indicated that the proportion of males and females did not differ statistically across communities (χ2 (2) = 1.60, ns).[78] The findings also indicated that the clients did not differ across communities with respect to age when children were included (H (2) = 5.73, ns).[79] When children were excluded from the analysis, it was noted that the age of clients significantly differed across communities (H (2) = 7.67, p < .05); the sample in Inukjuak tended to be younger and the sample in Kuujjuaq tended to be older. Finally, the findings indicated that education levels differ across communities (H (2) =10.16, p < .01);[80] clients in Inukjuak tend to be better educated than clients in the other two communities. This finding is consistent with the fact that younger individuals tend to be better educated.


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Figure 5-3: Gender of Clients by Community

Figure 5-3: Gender of Total Continuing Care Clients by Community

Figure 5-4: Age of Clients by Community

Figure 5-4: Age of Total Clients by Community

Figure 5-5: Educational Level of Clients by Community

Figure 5-5: Educational Level of Total Clients by Community

Level of Schooling

  1. No formal schooling
  2. Kindergarten to Grade 3
  3. Grades 4 to7
  4. Some high school (8-12)
  5. High school graduate
  6. Some technical school, trade school, college or university
  7. Completed bachelor's degree or equivalent (including technical/trade school)

Top of Page

5.3 Functional Status and Determination of Care Levels

5.3.1 Introduction

In continuing care, an individual's functional ability is generally more important than his/her health condition(s) in determining resource requirements. As the focus of the current study was on continuing care requirements, a measure of functional status, the SMAF, was included as one of the study instruments. The SMAF provides information about functional status in five areas (ADLs, Mobility, Communication, Mental Functions, and IADLs). It also provides information about the utilization of several assistive devices, such as incontinence products, canes, and hearing aids. Findings related to the use of various assistive devices are discussed in Section 5.3.2. Findings related to clients' functional status are discussed in more detail in Section 5.3.3.

Functional status information was obtained for all but one client. As shown in Table 5-4, the majority (61.5%) of functional status interviews were conducted in Inuktitut. An additional 16.7% were conducted in English, 14.1% were conducted in French, and 7.7% were conducted in both English and Inuktitut. In all but one case, the interviewers were able to provide any necessary translation. The majority (64.1%) of functional status interviews were completed by clients; 7.7% were completed by family caregivers, 24.4% were completed by paid health care personnel, and 2.6% were completed by both the client and a paid health care member.

Table 5-4: Individuals Completing the Functional Status Measure

Language used

Home

Facility

Total

#

%

#

%

#

%

English

2

3.6

11

50.0

13

16.7

French

1

1.8

10

45.5

11

14.1

Inuktitut

47

83.9

1

4.5

48

61.5

More than one language

6

10.7

0

0.0

6

7.7

Total

56

100

22

100

78

100

Functional measure completed by

Clients

49

87.5

1

4.8

50

64.9

Family caregivers

5

8.9

1

4.8

6

7.8

Paid health care personnel

1

1.8

18

85.7

19

24.7

More than one individual

1

1.8

1

4.8

2

2.6

Total

56

100

21

100

77

100

5.3.2 Use of Assistive Devices

Table 5-5 presents findings related to the use of various assistive devices. Findings are provided only for those individuals who indicated they used one or more devices. As shown in the table, 19 individuals had glasses or used a magnifying glass. All of these individuals lived at home. Although only seven individuals used a walker, approximately 22.7% of the individuals living in a facility had one. Fourteen individuals used a wheelchair. The majority of these individuals lived in a facility, and it appears that over 45% of the individuals in a facility have a wheelchair. Note that 14% of clients living at home used a cane, walker, or wheelchair. Given that external sidewalks are generally not available in the study communities, the ability of these clients to move outside of the home may be affected, particularly during certain times of the year. Twelve clients (15.4% of the sample) experienced both bladder and bowel incontinence and incontinence both during the day and at night.[81] Three of these individuals lived at home; the remainder lived in a facility. Two clients (2.6%) were bedridden and required assistance with positioning. As shown in Table 5-5, 5.1% of clients were bedridden and required a lift to be transferred; none of the clients required a transfer board.

Table 5-5: Use of Various Assistive Devices by Location of Client
Type of Assistive Device
Home
#
Home
%
Facility
#
Facility
%
Total
#
Total
%
Nasogastric tube 0 0.0 0 0.0 0 0.0
Gastrostomy 0 0.0 2 9.0 2 2.6
Incontinence pad 1 1.8 10 45.5 11 14.1
Urinary condom or indwelling catheter 0 0.0 0 0.0 0 0.0
Ostomy 1 1.8 0 0.0 1 1.3
Commode, bedpan or urinal 0 0.0 0 0.0 0 0.0
Lift 0 0.0 4 18.2 4 5.1
Transfer board 0 0.0 0 0.0 0 0.0
Cane (including tripod and quadripod cane) 2 3.6 1 4.5 3 3.8
Walker 2 3.6 5 22.7 7 9.0
Prosthesis or orthosis 2 3.6 2 9.0 4 5.1
Wheelchair 4 7.1 10 45.5 14 17.9
Glasses or magnifying glass 19 33.9 0 0.0 19 24.4
Hearing aid 2 3.6 0 0.0 2 2.6
Computer or communication board 0 0.0 0 0.0 0 0.0
Medication dispenser aid 2 3.6 1 4.5 3 3.8
Total number of individuals
56
N/A
22
N/A
78
N/A

Note: Percentages are based on the number of individuals in each group who provided information regarding their income. Individuals could provide multiple responses.

5.3.3 Creation of Care Levels

As previously noted, the SMAF consists of five subscales. Using scores on the five subscales and the total score, individuals can be categorized using a 14 category classification system (Dubuc, Hébert, Desrosiers, Buteau, & Trottier, 1999). The categories are related to the amount of assistance the client requires; clients in Category 1 require the least amount of assistance, while those in Category 14 require the most. Thus, each of the categories can be considered a "level of care".

The Dubuc et al. (1999) classification system was not used in this study, primarily because of the sample size. Instead, the approach used by Hollander et al. (2002) was used.[82] The distribution of total SMAF scores for the Inuit data was examined and possible cut points for care level categories were identified. The distributions of total SMAF scores for both the Québec and Manitoba First Nations data were also examined to determine the best cut points for all three sets of data (using the same cut points for all three sets of data enables comparisons to be made among the three study regions).

Ultimately, seven "care level" categories were created. The first category included total scores between 0 and 4.5. The second category included total scores between 5.0 and 14.5. The third category included total scores between 15.0 and 24.5. The fourth category included total scores between 25.0 and 39.5. The fifth category included total scores between 40.0 and 52.5. The sixth category included total scores between 53.0 and 64.5. The seventh category included total scores between 65.0 and 87.0.[83] The means and standard deviations for all care levels are presented in Table 5-6. Using total functional status scores as a dependent variable, a 2 (location of care; home versus facility) by 7 (care levels) analysis of variance (ANOVA) was conducted.[84]

Table 5-6: Means and Standard Deviations for Total Functional Status Scores by Care Levels

Care Level *

 

Home

Facility

Total

Level 1
(0 to 4.5)

Mean

1.4

-

1.4

Standard Deviation

1.5

-

1.5

Number

27

0

27

Level 2
(5.0-14.5)

Mean

7.6

13.0

7.9

Standard Deviation

2.1

-

2.4

Number

17

1

18

Level 3
(15.0-24.5)

Mean

18.2

21.3

19.4

Standard Deviation

2.8

3.8

3.4

Number

6

4

10

Level 4
(25.0-39.5)

Mean

29.4

28.4

28.9

Standard Deviation

2.8

4.5

3.5

Number

4

4

8

Level 5
(40.0-52.5)

Mean

-

46.0

46.0

Standard Deviation

-

8.5

8.5

Number

0

2

2

Level 6
(53.0-64.5)

Mean

55.5

57.0

56.4

Standard Deviation

0.7

6.1

4.4

Number

2

3

5

Level 7
(65.0-87.0)

Mean

-

74.8

74.8

Standard Deviation

-

6.1

6.1

Number

0

8

8
* Numbers in parentheses refer to total SMAF scores.

Because the care levels were created so that home and facility clients within a care level would be comparable, but clients within different care levels would differ, it was expected that the analysis would show a significant main effect for care levels indicating that the care level groups were statistically different from one another. It was also expected that the main effect of location of care would not be significant; a significant finding would indicate that clients living at home were different from clients living in a facility. Further, it was expected that the interaction between the location of care and care levels would not be significant; a significant interaction would indicate that clients living at home differed from clients living in a facility, but only for one or more of the care levels. The results were as expected. The ANOVA revealed a significant main effect of care levels (F (6,67) = 283.27, p < .001. Neither the main effect of location of care, nor the interaction were significant.[85]


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5.3.4 Demographic Characteristics and Functional Status

One of the questions of interest was whether the distribution of males and females differed across care levels. A second question was whether the number of individuals in each age group differed across care levels. Table 5-7 presents gender by care level. Table 5-8 presents age by care level. Given the large number of empty cells, no analyses were conducted.

Table 5-7: Gender by Care Level

Home

Male

Female

Total

#

%

#

%

#

%

Level 1 (0-4.5)

10

40.0

17

54.8

27

48.2

Level 2 (5.0-14.5)

9

36.0

8

25.8

17

30.4

Level 3 (15.0-24.5)

3

12.0

3

9.7

6

10.7

Level 4 (25.0-39.5)

2

8.0

2

6.5

4

7.1

Level 5 (40.0-52.5)

 

 

 

 

0

0.0

Level 6 (53.0-64.5)

1

4.0

1

3.2

2

3.6

Level 7 (65.0-87.0)

 

 

 

 

0

0.0

Total

25

100

31

100

56

100

Facility

Level 1 (0-4.5)

 

 

 

 

0

0.0

Level 2 (5.0-14.5)

1

10.0

 

 

1

4.8

Level 3 (15.0-24.5)

3

30.0

1

9.1

4

19.0

Level 4 (25.0-39.5)

3

30.0

1

9.1

4

19.0

Level 5 (40.0-52.5)

 

 

2

18.2

2

9.5

Level 6 (53.0-64.5)

1

10.0

1

9.1

2

9.5

Level 7 (65.0-87.0)

2

20.0

6

54.5

8

38.1

Total

10

100

11

100

21

100
Note: Empty cells have been left blank (except for Totals) to assist with illustrating which cells contain figures.

Table 5-8: Age by Care Level

 

Care Levels

Age

0-17

18-34

35-54

55-64

65-74

75+

Total

#

%

#

%

#

%

#

%

#

%

#

%

#

%

Home

Level 1 (0-4.5)

 

 

4

57.1

4

66.7

7

70.0

9

50.0

3

30.0

27

48.2

Level 2 (5.0-14.5)

 

 

3

42.9

2

33.3

2

20.0

6

33.3

4

40.0

17

30.4

Level 3 (15.0-24.5)

3

60.0

 

 

 

 

 

 

2

11.1

1

10.0

6

10.7

Level 4 (25.0-39.5)

1

40.0

 

 

 

 

1

10.0

1

5.6

1

10.0

4

7.1

Level 5 (40.0-52.5)

 

 

 

 

 

 

 

 

 

 

 

 

0

0.0

Level 6 (53.0-64.5)

1

40.0

 

 

 

 

 

 

 

 

1

10.0

2

3.6

Level 7 (65.0-87.0)

 

 

 

 

 

 

 

 

 

 

 

 

0

0.0

Total

5

100

7

100

6

100

10

100

18

100

10

100

56

100

Facility

Level 1 (0-4.5)

 

 

 

 

 

 

 

 

 

 

 

 

0

0.0

Level 2 (5.0-14.5)

 

 

 

 

1

25.0

 

 

 

 

 

 

1

4.8

Level 3 (15.0-24.5)

 

 

2

25.0

1

25.0

1

50.0

 

 

 

 

4

19.0

Level 4 (25.0-39.5)

 

 

1

12.5

1

25.0

 

 

1

100

1

25.0

4

19.0

Level 5 (40.0-52.5)

 

 

 

 

 

 

 

 

 

 

2

50.0

2

9.5

Level 6 (53.0-64.5)

 

 

1

12.5

 

 

 

 

 

 

1

25.0

2

9.5

Level 7 (65.0-87.0)

2

100

4

50.0

1

25.0

1

50.0

 

 

 

 

8

38.1

Total

2

100

8

100

4

100

2

100

1

100

4

100

21

100
Note: Empty cells have been left blank (except for Totals) to assist with illustrating which cells contain figures.

Another question of interest was whether individuals at the various care levels differed with regard to the functional difficulties they experienced. Table 5-9 presents means and standard deviations for each subscale and the total score by care level. Figures 5-6 and 5-7 present the information in graphic form. As shown in both Table 5-9 and Figure 5-6, clients receiving services at home have little difficulty with all of the areas at Level 1. At Level 2, they have some difficulty with IADLs. At Level 3, they have more difficulty with IADLs and some difficulty with ADLs. At Level 4, they have more difficulty with IADLs and ADLs and some difficulty with mobility. At Level 6, they have difficulty in all areas except mental functions (there were no clients in this group at Levels 5 and 7).

As shown in both Table 5-9 and Figure 5-7, clients receiving services in a facility have difficulty with mental functions at all levels. With the exception of mental functions, clients receiving services in a facility show a pattern of losses that is similar to that observed with clients receiving services at home. That is, IADLs are affected first, followed by ADLs, followed by mobility, and followed by communication. At the highest level (Level 7), all areas are affected. The findings are consistent with patterns of functional loss that are observed in non-Aboriginal populations.

It was thought that some of the subscales (e.g., Communication and IADLs) may be more sensitive than others to the developmental abilities of children. Therefore, a logistic regression was conducted to determine if location of care could be predicted using any of the subscale scores from individuals 18 years of age and older only (that is, children were excluded from the analysis). Only the Mental Functions subscale was significant, indicating that clients that had difficulties with mental functioning (particularly judgment; see Table 5-10) were more likely to be living in a facility than at home. This is consistent with the findings presented in Table 5-9 and Figure 5-7.


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Figure 5-6: Distribution of SMAF Subscale Scores by Care Level for Clients Receiving Services at Home

5-6: Distribution of Functional Autonomy Measurement System Subscale Scores by Care Level for Clients Receiving Services at Home

Table 5-9: Means and Standard Deviations for Each Subscale on the Functional Status Measure

Care Level

 

 

Activities of Daily Living

Mobility

Communication

Mental Functions

Instrumental Activities of Daily Living

Total SMAF Score

Level 1
(0-4.5)

Home

Mean

0.0

.13

.37

.07

.81

1.39

SD

0.0

.36

.74

.27

1.29

1.53

Number

27

27

27

27

27

27

 

Facility

Mean

-

-

-

-

-

-

SD

-

-

-

-

-

-

Number

0

0

0

0

0

0

Level 2
(5.0-14.5)

Home

Mean

.50

.47

1.44

.35

4.79

7.56

SD

1.00

.87

1.20

.61

2.70

2.14

Number

17

17

17

17

17

17

 

Facility

Mean

0.0

0.0

0.0

7.00

6.00

13.00

SD

-

-

-

-

-

-

Number

1

1

1

1

1

1

Level 3
(15.0-24.5)

Home

Mean

1.00

.83

1.50

.50

14.33

18.17

SD

1.55

1.21

1.76

.55

2.25

2.84

Number

6

6

6

6

6

6

 

Facility

Mean

.50

.13

0.0

5.75

14.88

21.25

SD

1.00

.25

0.0

3.86

3.84

3.77

Number

4

4

4

4

4

4

Level 4
(25.0-39.5)

Home

Mean

6.25

3.38

.50

1.50

17.75

29.38

SD

4.57

2.93

.58

3.00

2.63

2.81

Number

4

4

4

4

4

4

 

Facility

Mean

3.63

.13

.25

5.50

18.88

28.38

SD

2.93

.25

.50

3.42

3.71

4.50

Number

4

4

4

4

4

4

Level 5
(40.0-52.5)

Home

Mean

-

-

-

-

-

-

SD

-

-

-

-

-

-

Number

0

0

0

0

0

0

 

Facility

Mean

9.75

3.25

2.00

7.50

23.50

46.00

SD

3.18

2.47

1.41

3.54

.71

8.49

Number

2

2

2

2

2

2

Level 6
(53.0-64.5)

Home

Mean

17.50

11.00

2.00

2.50

22.50

55.50

SD

.71

1.41

1.41

3.54

.71

.71

Number

2

2

2

2

2

2

 

Facility

Mean

15.83

9.50

1.67

7.67

22.33

57.00

SD

3.69

3.50

1.15

4.73

.58

6.08

Number

3

3

3

3

3

3

Level 7
(65.0-87.0)

Home

Mean

-

-

-

-

-

-

SD

-

-

-

-

-

-

Number

0

0

0

0

0

0

 

Facility

Mean

20.56

13.69

5.25

12.63

22.63

74.75

SD

.90

1.58

2.66

1.69

.74

6.14

Number

8

8

8

8

8

8
Note: Maximum possible scores are: Activities of Daily Living, 21; Mobility, 18; Communication, 9; Mental Functions, 15; Instrumental Activities of Daily Living, 24; Total, 87.

Figure 5-7: Distribution of SMAF Subscale Scores by Care Level for Clients Receiving Services in a Facility

Figure 5-7: Distribution of SMAF Subscale Scores by Care Level for Clients Receiving Services in a Facility

Table 5-10: Means and Standard Deviations for the Mental Functioning Items by Location of Clients

Item

 

Home

Facility

Memory

Mean

0.14

1.79

Standard Deviation

0.40

0.92

Orientation

Mean

0.04

1.47

Standard Deviation

0.20

1.22

Comprehension

Mean

0.02

1.58

Standard Deviation

0.14

1.17

Judgment

Mean

0.04

2.32

Standard Deviation

0.20

0.89

Behaviour

Mean

0.06

1.42

Standard Deviation

0.24

1.07
Note: Total score possible on each item is 3. The higher the score, the poorer one's functional ability is. The findings are based on 51 clients living at home and 19 clients living in a facility.

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5.4 Involvement of Proxies

As shown in Table 5-1 above, approximately 33% of the Client Interviews were completed by someone who served as a proxy for the client. Proxies were used for all but one of the clients receiving services in a facility, but for only a few of the individuals receiving services at home. In some cases, both a client and a proxy completed different sections of the Client Interview. However, in the majority of cases, one or more proxies answered the questionnaire on behalf of the client.

Proxies were asked to provide only factual information regarding the client.[86] When only proxies were used, data were not obtained for some of the questions on the Client Interview (for example, those related to satisfaction with current care services, or where one would like to obtain continuing care services in the future). Thus, data regarding some areas on the Client Interview are not available for individuals receiving services in a facility.

5.5 Housing

5.5.1 Individuals Living at Home

Clients living at home were asked a number of questions regarding their living situation. For example, clients were asked whether they rented or owned their own home. All but one client indicated that the home was owned by the Kativik Municipal Housing Corporation and that they rented the home (that is, 98.2% of clients lived in rental accommodation). As shown in Table 5-11, 24.6% of clients lived in homes that were less than five years old; another 31.6% lived in homes that were more than 15 years old. Approximately 17.5% of the clients did not know how old their home was.

The homes appeared to be in relatively good condition; 55.4% of clients indicated that only regular maintenance was required (for example, paint). An additional 32.1% indicated that minor repairs were required (for example, fixing holes in walls, fixing a broken bathtub). However, 12.5% of clients indicated that major repairs were needed (for example, fixing broken windows, fixing spots that leak when it rains). Several individuals commented that the rooms were small. Others commented that one or more rooms in the house were cold because of poor heating. Mold or mildew was present in 19.3% of the homes. The majority (83.6%) of clients felt that the main water supply in their home was safe for drinking.[87]

Of the 12 individuals who indicated that modifications to their home were required because of their physical or health condition, only half indicated that the modifications had been made (usually grab bars in the bathroom and wheelchair ramps; others commented that these types of modifications were required). There appeared to be two major reasons why required repairs and modifications were not made: either people had asked for the repairs or modifications to be made and the housing corporation had not come, or, people had not asked for the repairs/modifications.

Table 5-11: Characteristics of Home

Characteristic of Home

 

# of Clients

%

Age of home

Less than 1 year

1

1.8

1 to 5 years old

13

22.8

6 to 10 years old

3

5.3

11 to 15 years old

12

21.1

16 to 20 years old

11

19.3

21 to 25 years old

2

3.5

More than 25 years old

5

8.8

Age unknown

10

17.5

Total

57

100

Home in need of repairs

Yes, major repairs

7

12.5

Yes, minor repairs

18

32.1

No, only regular maintenance

31

55.4

Total

56

100

Home has mold or mildew

Yes

11

19.3

No

46

80.7

Total

57

100

Main water supply is safe for drinking

Yes

46

83.6

No

9

16.4

Total

55

100


Clients were asked what resources they had available in their homes. All of the clients indicated that they had a fridge, an electric stove, electricity, home water delivery, cold running water, hot running water, a flush toilet, a septic tank or sewage system, and home garbage collection service. All but one client (1.8%) indicated they had a heating system (usually oil) and all but five clients (8.8%) indicated they had a telephone. However, external sidewalks appeared to be uncommon; only five clients (8.8%) indicated that their home had a sidewalk outside.

As shown in Table 5-12, individuals living at home generally lived in large households;[88] 38.5% of clients living at home lived with five or more other individuals (that is, in households having six or more individuals). The mean number of people living in a household was 5.2 (standard deviation = 2.3). Clients were also asked how many rooms were in their home, including the kitchen, living room, bedrooms and finished basement rooms, but not including bathrooms, halls, laundry rooms or attached sheds. Some 22.8% of clients indicated that they lived in homes that had six or more rooms. The mean number of rooms in a home was 4.9 (standard deviation = 1.0).

Table 5-12: Number of People Living in Home and Number of Rooms in Home

 

 

# of Clients

%

Number of People Living in Home

1

1

1.8

2

6

10.5

3

5

8.8

4

13

22.8

5

10

17.5

6

6

10.5

7

6

10.5

8

6

10.5

9

0

0.0

10

4

7.0

Total

57

100

Number of Rooms in Home

1

0

0

2

0

0

3

1

1.8

4

20

35.1

5

23

40.4

6

8

14.0

7

5

8.8

Total

57

100

Table 5-13 shows the number of people living in a household as a function of the number of rooms in the house. Basavarajappa (1998, p. 13) defined overcrowding as "more than one person per room". Using this definition, 31.6% of the clients receiving services at home lived in overcrowded homes.

Table 5-13: Number of People Living in Home by Number of Rooms in the Home

Number of People Living in Home

Number of Rooms in Home

Total

3

4

5

6

7

1

 

 

1

 

 

1

1.8

2

 

6

 

 

 

6

10.5

3

 

5

 

 

 

5

8.8

4

1

5

7

 

 

13

22.8

5

 

2

6

1

1

10

17.5

6

 

2

2

1

1

6

10.5

7

 

 

4

2

 

6

10.5

8

 

 

1

3

2

6

10.5

10

 

 

2

1

1

4

7.0

Total

1

20

23

8

5

57

100
Note: Empty cells have been left blank (except for Totals) to assist with illustrating which cells contain figures.

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5.5.2 Individuals Living in a Facility

Clients living in a facility setting were asked several questions regarding their living situation. As noted earlier, proxies generally completed the Client Interview for individuals living in a facility. As a result, clients' perceptions regarding some areas (such as: whether the room was safe; whether the facility was safe; ratings of the different departments; ratings of the staff; ratings of the facility; and whether the facility should be recommended) were not available. The findings from several other questions are presented below. While some of these questions relate to relatively factual information, others border on a grey area between fact and perception.

Of the 22 clients living in a facility, 54.5% shared a room with someone. In all cases, the person was not related to the client. None of the clients had a spouse or relative in an adjoining room in the facility.

In general, the facilities appeared to be in good condition; 71.4% of respondents indicated that the client's room required only regular maintenance; 23.8% indicated that the room required minor repairs; and 4.8% indicated that the room required major repairs. All of the respondents indicated that no improvements needed to be made to clients' rooms with respect to: air circulation, lighting, mirrors, taps, temperature control, noise level, and floors. However, 38.1% of respondents indicated that improvements were needed with respect to room size. For example, respondents commented that the room size should be more appropriate "for the patient's lift" and "for client transfers" and "because there are two patients in the same room".

Respondents were also asked to indicate whether modifications to clients' rooms were required because of a physical or health condition. Respondents indicated that no modifications were required with respect to: the width of doorways; handrails; or toilet height or location. Some 36.3% of respondents indicated that more space was needed in general in the clients' rooms, 27.3% of respondents indicated that bathroom modifications were required and 22.7% of respondents indicated that bathtub modifications were required. For example, one respondent noted that a "therapeutic bath would be better." It appeared that identified modifications had not been made due to financial constraints. For example, respondents noted that there is "nothing (for modifications) in the budget" and "the budget does not permit modifications".

5.5.3 Paid Health Care Providers Perceptions on the Facilities

As noted above, paid health care professionals completed the Client Interview for the majority of individuals who were living in facilities. While this meant that clients' perceptions of the facility setting were not available, staff's perceptions were. Since the same staff members responded for several clients, the frequency of responses is not as important as the pattern of responses.[89]

Staff characteristics (such as courtesy, friendliness, helpfulness and professionalism) were generally rated as "Excellent". With the exception of activities, the various departments in the facilities (nursing, dietary, housekeeping, laundry, maintenance, and administration) were rated as "Good" or "Excellent". Social activities were generally rated as "Poor" or "Fair". For example, respondents noted that: "(there are) no social activities"; "(the client) should be able to participate in activities in the community"; and "it is hard to find activities which would be interesting for (the client)". On the more positive side, one respondent noted that "community elders come every day". Several facility services, such as food, overall facilities, overall services, overall staff, and safety, were generally rated as "Good" or "Excellent". Activities, external sidewalks and the number of visitors were generally rated as "Poor" to "Fair". Respondents noted that: "(there are) no activities at all"; "(there are) no external sidewalks"; and "(the client) has very few visitors". Keep in mind that respondents would have been rating themselves and/or their colleagues and their organization on all of these questions.

The majority of respondents (71.4%) indicated that they had a "Poor understanding" of the resident contribution/rent, 14.3% indicated they had a "Fair understanding" and 14.3% indicated they did not know about the contribution/rent.

Approximately 42.9% of respondents felt that the facility should offer more services, 38.1% did not feel more services were required, and 19.0% did not know if additional services were required. Respondents who felt more services should be offered noted that there was a need for physiotherapy, social and recreational activities, and specialized education (for children with special needs).

All of the respondents felt that the clients' rooms were safe and all but one respondent felt that the facility was safe. This individual commented that "Too many people have access to the facility, especially at night". The majority (95.2%) of respondents indicated that they would recommend the facility to others.


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5.6 Availability of Caregivers

It had been anticipated, based on research conducted by Hollander et al. (2002) that approximately 86% of clients would have a family caregiver. This was not observed. Of the 57 clients living at home, 20 (35.1%) indicated they had a family caregiver. Of the 22 clients living in a facility, 1 (4.5%) indicated he/she had a family caregiver. Seven clients indicated that they had recently lost someone who used to provide them with care and support. One of these individuals indicated he/she was receiving care and support from a family caregiver (this individual is included above), two were receiving care and support from family members (but did not consider them to be family caregivers), one was receiving care and support from the formal care system and three were not receiving any care or support.

In some cases, clients indicated that they had more than one family caregiver. Together, the 21 clients who had a family caregiver identified 30 caregivers. Table 5-14 presents data regarding the family caregivers, as identified by the clients (Chapter 6 presents similar information gathered from the caregivers themselves). Some 38.1% of clients were cared for by parents, generally a mother. An additional 33.3% of clients were cared for by children; daughters provided care more frequently than sons. Spouses (all wives) provided care to 23.8% of the clients. Thus, consistent with the non-Aboriginal caregiving literature, females tend to provide informal care more frequently than males.

Clients were asked how long they had been receiving help or support from their family caregiver. Of the 17 individuals who responded to this question, 14 (82.3%) had been receiving care and/or support for more than two years.

Clients were asked how far away their main/primary family caregiver lived. Of the 19 individuals who responded to this question, 78.9% indicated that the caregiver lived in the same house; the remaining 21.1% indicated the caregiver lived in the same community.

Table 5-14: Characteristics of Family Caregivers as Identified by Clients

Characteristic

 

#

%

Relationship of family caregiver to
Client

Spouse

5

23.8 *

Child (including in-laws)

7

33.3

Sibling (including in-laws)

3

14.3

Parent

8

38.1

Grandchildren

3

14.3

Other relative

1

4.8

Friend

1

4.8

Neighbour

1

4.8

Other

1

4.8

Length of time client has been
receiving help/support from family
caregiver

Less than 1 year

2

11.8 **

1 to 2 years

1

5.9

More than 2 years but less than 5 years

5

29.4

More than 5 years

9

52.9

Total

17

100

Distance main/primary family
caregiver lives from client

In the same house

15

78.9 **

Very close

0

0

In the same community

4

21.1

Far away

0

0

Total

19

100
* Percentages are based on the number of clients who indicated they had a family caregiver (n=21).
**Percentages are based on the total number of clients who responded.

5.7 Use of Health Related Services

Clients were asked several questions regarding their use of health related services. Many of these questions were included in order to gain an understanding of costs associated with the provision of continuing care services. Issues regarding the use of health related services are discussed in this chapter. Issues related to costs associated with the health related services are discussed in Chapter 7.

Clients were asked if they required assistance with several activities, and if so, who provided the assistance. If the assistance was provided by family caregivers, clients were asked how much of the assistance was due to their increased need for care.[90] Finally, clients were asked if they required any additional assistance.

Table 5-15 identifies the activities clients received assistance with, and who provided the assistance, by location. Clients could indicate that more than one individual provided them with assistance. Overall, the three most frequently provided activities were: assistance with obtaining medical equipment, medical supplies and medications; assistance with coordinating and arranging medical appointments and health services; and assistance with identifying professionals who can provide services and/or medical equipment.

For clients receiving services at home, the three most frequently provided activities were: obtaining medical equipment, medical supplies and medications; assistance with coordinating and arranging medical appointments and health services; assistance with house maintenance and chores outside; and house maintenance inside.

For clients receiving services in a facility, the most frequently provided activities were: assistance with financial tasks; assistance with identifying professionals who can provide services and/or medical equipment; assistance with coordinating and arranging medical appointments and health services; and assistance with obtaining medical equipment, medical supplies and medications (nursing and/or medical care was fifth on the list).

Consistent with findings reported above, clients living at home receive services from family caregivers; clients living in a facility receive assistance from multiple paid caregivers. Considering only those individuals who received assistance with one or more tasks, family caregivers provided a lot of assistance with house maintenance (both inside and outside) while formal care providers provided a lot of assistance with mobility and communication.

Clients who indicated that they received assistance from a family caregiver were also asked how much of the assistance was provided because of their increased need for care. The findings from this question are presented in Table 5-16. The findings should be interpreted cautiously, however, as there were several individuals who indicated they did not know how much of the assistance they were receiving was due to their increased need for care. For the most part, clients do not seem to feel that the assistance they receive from family caregivers is due to their increased need for care.

There are at least three explanations for this finding. First, many clients may not have understood the question, given their difficulties in understanding what was meant by "family caregiver". Second, clients may have understood the question, but may have been reluctant to indicate that their health condition(s) was (were) getting worse and they needed assistance. Third, clients may normally receive a large amount of assistance because of family relationships.

Table 5-15: Assistance Provided to Clients by Location
Activities

Assistance Provided

Who Provides Assistance (if provided) *

 

Yes

No

Total

Family Caregiver

Formal Care System **

 

#

%

#

%

#

%

#

%

#

%

Eating, meal planning, meal preparation

Home

10

33.3

47

95.9

57

72.2

9

30.0

1

3.3

Facility

20

67.7

2

4.1

22

27.8

0

0.0

38

126.7

Total

30

100

49

100

79

100

9

30.0

39

130.0

Personal care (e.g., bathing, dressing, toileting)

Home

13

41.9

44

91.7

57

72.2

8

25.8

4

12.9

Facility

18

58.1

4

8.3

22

27.8

0

0.0

33

106.5

Total

31

100

48

100

79

100

8

25.8

37

119.4

Communication (e.g., vision, being understood by others)

Home

9

34.6

48

90.6

57

72.2

7

26.9

1

3.8

Facility

17

65.4

5

9.4

22

27.8

0

0.0

34

130.8

Total

26

100

53

100

79

100

7

26.9

35

134.6

Financial tasks (e.g., budgeting, bill payments, completing forms)

Home

14

38.9

42

100

56

71.8

11

30.6

2

5.6

Facility

22

61.1

0

0

22

28.2

0

0.0

32

88.9

Total

36

100

42

100

78

100

11

30.6

34

94.5

Light housekeeping and home maintenance (e.g., light cleaning, laundry)

Home

19

73.1

38

74.5

57

74.0

13

50.0

6

23.1

Facility

7

26.9

13

25.5

20

26.0

0

0.0

10

38.5

Total

26

100

51

100

77

100

13

50.0

16

61.6

House maintenance inside (e.g., heavier cleaning, painting)

Home

20

76.9

35

72.9

55

74.3

13

50.0

8

30.8

Facility

6

23.1

13

27.1

19

25.7

0

0.0

9

34.6

Total

26

100

48

100

74

100

13

50.0

17

65.4

House maintenance and chores outside (e.g., shoveling snow)

Home

22

78.6

34

72.3

56

74.7

10

35.7

12

42.9

Facility

6

21.4

13

27.7

19

25.3

0

0.0

6

21.4

Total

28

100

47

100

75

100

10

35.7

18

64.3

Mobility inside the house/facility (e.g., walking inside

Home

4

22.2

53

86.9

57

72.2

3

16.7

1

5.6

Facility

14

77.8

8

13.1

22

27.8

0

0.0

28

155.6

Total

18

100

61

100

79

100

3

16.7

29

161.2

Mobility outside the house/facility (e.g., getting to other places)

Home

9

37.5

48

88.9

57

73.1

8

33.3

2

8.3

Facility

15

62.5

6

11.1

21

26.9

0

0.0

30

125.0

Total

24

100

54

100

78

100

8

33.3

32

133.3

Nursing or medical care (e.g., foot care, medications)

Home