Continuing Care in First Nations and Inuit Communities: Evidence from the Research

© Her Majesty the Queen in Right of Canada, represented
by the Minister of Health Canada, 2007
ISBN: 978-0-662-05029-2
Cat. No.: H34-182/2007
ISBN: 978-0-662-46675-8 (PDF version)
Cat.: H34-182/2007E-PDF (PDF version)

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In early 2004, the Government of Canada and First Nations and Inuit organizations undertook research to gain a better understanding of existing home and facility-based continuing care services in First Nations and Inuit communities. The research looked at the needs and preferences for services of a sample of almost 500 clients who were receiving continuing care services in their own home or in a facility in eight First Nations communities in Manitoba and Quebec, and three Inuit communities in Nunavik. Interviews with health managers in other regions were also conducted to round out the work.

How was it done?

Using a commonly used standardized assessment tool, each client was assigned a 'need' score. In addition, clients, family members and formal caregivers were interviewed to obtain information regarding the type and quality of services received, whether they felt clients' needs were being met, their preferred location to receive these services and the contributions of family members to care giving.

A breakdown of First Nations and Inuit continuing care clients who participated in the study is as follows: 79 Inuit; 191 Manitoba First Nations; and 192 Quebec First Nations. Among the family members and formal caregivers who were interviewed, a total of 38 were Inuit caregivers; 171 were Manitoba First Nations caregivers; and 89 were Quebec First Nations caregivers. The Manitoba sample included both clients considered "at risk" for admission to home care and their caregivers, so for the synthesis report, Manitoba data on 179 clients and 166 caregivers was included.

In order to build capacity and transfer knowledge at the community level, trained members from their respective communities conducted interviews. As well, First Nations and Inuit research partners undertook significant parts of the study themselves in Manitoba and Quebec. It is also important to note that the communities in Manitoba, Quebec and Nunavik included in the research all had institutional care facilities, provided either through the Assisted Living or another program, and each offered the Home and Community Care Program.

The findings.

The final report contains fifty recommendations that call for improvements to the continuing care services currently available to First Nations and Inuit. Here is what we learned.

• The needs of most continuing care clients (nearly 80%) are assessed as 'lower to moderate' (under two and a half hours of care per day), with the rest having higher needs (more than two and a half hours a day of care).
• Home care is used by clients at all levels of care, but it is used mostly by those assessed with lower care needs.
• Existing facility services are used by clients at all levels of care, but more frequently by those assessed with higher needs.
• First Nations and Inuit continuing care clients tend to be younger than clients from the general Canadian population.
• At all age levels, both First Nations and Inuit appear more likely to be continuing care clients than do others in the general Canadian population.
• Current continuing care services in First Nations and Inuit communities are often provided in a fragmented fashion.
• There are differences in the way First Nations and Inuit use continuing care services.

What clients told us.

• Over 95% of clients indicated that they would prefer to receive continuing care services, preferably in their own homes, definitely in their own communities, and usually from family members.
• Since many of the clients were not currently working for pay, their ability to pay for continuing care services is likely to be very limited.
• Housing is an issue for many clients. Housing may be overcrowded, in a poor physical state, or in some cases, clients were very isolated.

What unpaid family caregivers told us.

• Most provide a great deal of care each week and most have been doing so for many years.
• About one in three caregivers support two or more persons needing care.
• The potential for these caregivers to experience stress and burnout is high. It may be reduced by assistance provided by others (generally other family members

Where are the gaps?

• Families and caregivers require better access to home and community care during evenings and weekends and to respite care.
• The formal system should be structured to support families as much as possible when they can provide the care. This is critical for families to manage their heavy loads.
• Continuing care services need to be designed so that they also address the higher care needs including long-term and short-term facility based care.
• Supportive housing can also fill some of the gaps at lower levels of care.
• Various funding issues need to be addressed to meet the increased demand and higher level care needs and take into account case mix, community size and location and other factors such as culture and language requirements of the client, family and community.

What are the next steps?

A Joint Working Group (consisting of representatives from First Nations and Inuit communities, the Assembly of First Nations, Inuit Tapiriit Kanatami, Indian and Northern Affairs Canada, and Health Canada) is in the process of reviewing the recommendations, developing policy options and preparing a business case to support decision-making regarding improvements to continuing care services for First Nations and Inuit. Both departments have committed to using this information to seek support for increased investments and improvements to continuing care services. However, there are many steps that would need to be undertaken before this could become a reality.

When available, links to the reports will be posted on Home and Community Care.