The information needs of informal caregivers involved in providing support to a critically ill loved one

Common information needs

The information needs of informal caregivers will vary with individuals and their situations. Recent research, however, reveals that the following needs are most common.

Pain management

The need to know how to get pain relief for the loved one emerges as the most frequent information need of informal caregivers. In some cases, this need is a plea for help when pain management appears to be inadequate. Informal caregivers are often the most aware of the loved one's condition because of the amount of time they spend with them, particularly in home-based care, and because they know the loved one and are sensitive to their states. Informal caregivers can feel frustrated if their observations are not taken seriously by the professional care team. Informal caregivers report feeling fearful when pain breaks through, especially during the night or on weekends when the home care team may not be available. Those registered in hospice palliative care programs usually have access to a 24/7 help line and the possibility of home visits but those who do not have access to these programs often resort to provincial telephone advisory services and are referred to hospital emergency departments or their family physician who may not be available.

Navigating the system

Informal caregivers need information about navigating the health care system: learning who does what and how to access services. Many informal caregivers report time-consuming telephone searches in the transition from hospital to home care when there is a need for a variety of services but little coordination among service providers. National help line and information services report frequent requests from informal caregivers for information on services in their region, or in other regions when families are dispersed and trying to arrange care from a distance.

Informal caregivers report having to become their own case managers and having to assemble a variety of services from various providers, some publicly funded and others at financial cost to the family. Many informal caregivers have expressed the wish that there could be a single entry point for all health care services and referrals, or that there could be a coordinator or navigator who could inform them about what is available and how to access it. Informal caregivers have also expressed frustration with having to repeat their story to a variety of service providers or to a constantly changing set of providers within the same service.

Bereavement support

Requests from informal caregivers for information on bereavement support are common, according to information services that respond to informal caregivers involved in end-of-life care. This may reflect the reality that many Canadians are not linked to hospice palliative care services that would have referred them to bereavement programs, or they may have lost a loved one to sudden death. Research has shown that men work through bereavement differently than women; the bereavement needs of men need more research and probably the development of new models that do not rely mainly on the sharing of feelings in a group.

Respite

Informal caregivers need a break in order to recharge their batteries and be able to continue caregiving. They also need breaks to attend to other things in their life such as child care, relationships with people other than the ill person and care providers, shopping, their own health care and so on. Informal caregivers often express the need for information on respite services. The challenge for most informal caregivers is similar to that encountered when trying to navigate the health care system: there are many public, voluntary sector and private providers of respite services and tracking them down can be time-consuming. The further challenge is that often these programs have long waiting lists.

Caregiving information

Most informal caregivers are not trained nurses or health care professionals and yet they find themselves taking on a large part of care in the home. This can involve operating equipment such as a hospital bed that may have been brought into the home, turning the ill person in bed, giving fluids, food or medication, changing soiled bedding and clothing, and so on. Informal caregivers have expressed their desire to do these tasks in an effective and safe way and many have said that they need information on how to do so. Information services report fairly frequent requests for caregiving information from informal caregivers. Informal caregivers are often referred to their health care professional for help or to caregiving books and videos or DVDs. Informal caregivers often report that the professional team does not have time to instruct them; they then try to cope as best they can, sometimes at the risk of injury to themselves.

Some informal caregiver associations and health care associations have expressed the concern that the health care system is off-loading home care to informal caregivers and that providing technical training to informal caregivers will only increase the pressure on them to do more. This is an issue that requires more public discussion.

As the disease evolves: what to expect so we can plan Most informal caregivers have said that they need to know what to expect as their loved one's illness progresses so that they can both plan at the practical level and be emotionally prepared for changes. Questions often focus on the illness: How long will my loved one live? How do I deal cognitive impairment or dementia? How do I deal with alarming new symptoms? What happens when death occurs? Other questions focus on the financial and physical context: How long a leave of absence should I ask for from my job? How long will we need this equipment in the home? Still other questions focus on the informal caregiver's ability to continue to provide home care: How hard will it get and will I be able to cope? At what point might the ill person have to be hospitalized if I can't cope? Will there be a bed in a facility for the ill person if they do have to leave home?

Information services usually refer these types of questions back to the family's physician or care team. Here again, the professional care team may or may not have the time or communications skills to deal with these questions. Questions about the length of time until death are difficult for even the most skilled professional to answer because time of death is almost impossible to predict.

Dealing with the professional and volunteer care team

Some informal caregivers involved in home-based care report feeling that their home was "invaded" by a procession of strangers and that they felt displaced and no longer "at home" in their own house. The questions asked by informal caregivers about the care team often focus on what job each member of the care team does so that they know who they are dealing with and which questions are appropriate to ask of each member of the team. Informal caregivers will often ask if there can be continuity in the members of the care team so that they are not always getting used to new faces and having to explain their situation over again. Some informal caregivers have suggested that they be briefed about the members of the team who will be coming into their home or, if the ill person is in a facility, about the roles of the various health care providers.

Volunteers were mentioned by many informal caregivers in the research as occupying a special place. Informal caregivers will often turn to volunteers for information that they cannot get from the professional care team. They may also ask volunteers to verify information given to them by others or obtained through the informal caregiver's personal research. The volunteer is evidently seen as someone who is available and "there for them", probably because one of the volunteer's chief roles is to provide emotional support.

Legal and financial questions

Becoming an informal caregiver with a critically ill loved one involves many legal and financial issues. Informal caregivers who are in the work force may need to take time off work in the form of a vacation or a leave of absence. Many of their questions revolve around how much time off work to plan for, which may be difficult for a physician to estimate. The Employment Insurance Compassionate Leave plan allows for up to six weeks of partial coverage of earnings. Because the plan is fairly new, it is too early to know how much informal caregivers are using the plan and what questions they have about it.

Those who are taking care of their loved one at home have many financial questions about the potential cost of drugs, supplies and equipment that may not be paid for by the public health plan. They also have questions about the cost of obtaining more support beyond the number of hours allotted by the public system. Some information services report questions from informal caregivers about where they might access financial aid to help them cover home care costs.

The need for legal information usually focuses on wills, advance directives (the "living will" in which the ill person may have stated that they do not wish extraordinary measures to keep them alive in the event of heart or respiratory failure), or the power of attorney and when it should be activated if the ill person can no longer make their own decisions. Some information services can answer these questions through referral to appropriate programs while others will refer informal caregivers to their provincial bar association. Some informal caregivers also need information about who to call when a death occurs and about the proper procedures to follow.

Emotional and spiritual support

Evidence indicates that the need of informal caregivers for emotional support may be great but this need has not yet been thoroughly measured by research. Being an informal caregiver when a loved one is critically ill is stressful and emotionally demanding, whether the ill person is being cared for in a facility or at home. Informal caregivers who are interviewed after the death has occurred, in looking back on their experience, often report that they needed someone to talk to who was not part of the family or care team, someone to whom they could speak frankly about their feelings. Being able to do so is seen as an important way to relieve stress and find the strength to keep going. It is not easy for some informal caregivers to ask the question, Who can I talk to?, because they report feelings of guilt about being concerned about their own needs rather than those of the ill person. They also express a reluctance to burden the busy professional care team or feelings of awkwardness about admitting that they have emotional needs.

Some information services report that the apparent reason for many phone calls from an informal caregiver is a need for practical information, but that the caller quickly begins to share their emotions if the listener is sympathetic. One information service estimated that 50 to 70 percent of calls from informal caregivers were actually calls for emotional support. As one informal caregiver said: You can go through anything if you know you're not alone. Informal caregivers and volunteers report that the volunteer plays the vital role of empathetic listener who has no personal agenda with respect to the family.

Death raises spiritual issues for many people as they seek to find meaning and to integrate the experience into their system of values. Canadians have a decreased attachment to faith communities compared to the past and our society is increasingly pluralistic. Some informal caregivers report that they wanted to talk to someone about spiritual concerns, or about the spiritual concerns of the ill person, but felt reluctant to approach chaplains if the informal caregiver had no official affiliation with a faith. At the best of times, it can be difficult to confront the big spiritual questions but unresolved spiritual questions can cause anguish at the end of life if no support is found.

Complementary and alternative therapies

Some information services and hospice palliative care services report that informal caregivers request information on complementary and alternative therapies such as massage, healing touch, herbal treatments, and so on. Some of these therapies are associated with a holistic approach to the person and to healing that may have special appeal for those dealing with approaching death.

Culturally appropriate services

Some informal caregivers who participated in studies expressed the need for culturally-appropriate information or services, although most Canadian studies to date have focused on informal caregivers who can speak English or French. Aboriginal families have often expressed the need to find culturally appropriate services.

Informal caregivers report intergenerational differences when their ill loved one is an older person who may have retained a strong tie to cultural traditions or their language of origin after they immigrated to Canada, while the generation providing family care was born in Canada and is more at home with the Canadian system. These informal caregivers need information about services that are culturally appropriate for their loved one. Other families who have arrived more recently in Canada often have questions about how to find information and services in their language of origin. Those in large urban areas have more success in finding a diversity of culturally appropriate services and may find support from ethnocultural associations.

Rural areas

Informal caregivers living in rural areas may have different means of obtaining information compared to those living in urban areas. Some professional service providers and information services observe that people in rural areas know each other and know their service providers. Information is shared through an informal network that can be highly effective. On the other hand, rural areas have fewer services to choose from than urban areas and concerns about privacy and confidentiality may cause informal caregivers to seek information from the internet and other neutral sources.

Types of information services available...

A variety of information sources exists for informal caregivers. These sources are able to meet some, but by no means all, of the informal caregiver's information needs. Research indicates that a growing number of informal caregivers of all ages use the internet as a primary source of information, although some have concerns about the reliability of web-based information. All information services and resources listed here are considered reliable; some websites may have disclaimers with respect to linked websites.

The following section describes the most common types of information sources. Contact information for major information services is given near the end of this report.

Pan-Canadian information services

Canadian Hospice Palliative Care Association

The Canadian Hospice Palliative Care Association (CHPCA) maintains a website that provides information about hospice palliative care. The site has a directory of Canadian hospice palliative care services. It also provides links to a variety of other useful websites and to the provincial hospice palliative care associations. CHPCA distributes publications that may be useful to informal caregivers.

Living Lessons

The Living Lessons program is a joint venture of the GlaxoSmithKline Foundation and the Canadian Hospice Palliative Care Association (CHPCA). The program provides print and web-based resources for informal caregivers and professional care providers involved in end-of-life care. The national Living Lessons toll-free telephone information service and e-mail information service are housed at the CHPCA Ottawa office.

Canadian Virtual Hospice

The Canadian Virtual Hospice is web-based service for people dealing with life-threatening illness and loss. The service provides a means for informal caregivers to ask general questions of health care professionals, learn about end-of-life care, share their experiences with others through chat rooms and posted information, and obtain information about useful resources. It also provides resources for patients, volunteers and health care professionals.

Canadian Caregiver Coalition

The Canadian Caregiver Coalition represents the interests of informal caregivers, including those involved in end-of-life care. The Coalition aims to be a national clearing house for caregiver information, resources and research. It is an active advocate for caregiver issues at the national level but does not provide direct services to caregivers.

Disease-specific services

The Canadian Cancer Society maintains a national cancer information service consisting of a toll-free telephone line and web-based information as well as print resources. It does not directly provide information about end-of-life care but is well linked to hospice palliative care services and provides referrals to these services.

Other disease-specific organizations such as the Heart and Stroke Foundation, the ALS Society of Canada, the Canadian AIDS Society, and the Huntington Society of Canada do not offer national information services for informal caregivers, although they have some publications that touch on end-of-life care. Some organizations have provincial and local information and service offices.

Provincial/territorial information services

Provincial hospice palliative care associations

The Hospice Association of Ontario provides an End-of-Life Information Service for informal caregivers, patients and others interested in end-of-life care. The information service website contains material of interest to informal caregivers, among others. A confidential telephone information line is available.

Most provincial hospice palliative care associations do not provide a primary information service for informal caregivers because of lack of human and financial resources. The associations do what they can to provide information and referrals to appropriate services or resources.

Provincial/territorial health care telephone advisory services

Most provinces and territories have toll-free telephone advisory services available 24 hours a day, seven days a week. These services provide referrals, information and, in some jurisdictions, can send a nurse to the home. Referrals are usually made to the family physician, emergency services, palliative care programs or voluntary sector services.

Other information sources

Health care professionals

Health care professionals, and especially doctors and nurses on the care team, are usually the informal caregiver's first resort when seeking information. In most cases these professionals can be good sources of direct information or referrals to information. In other cases, as has been noted in a great deal of research, health care professionals may not have the time or skills to provide the information that informal caregivers need. Another factor in receiving adequate information is the ability of the informal caregiver to absorb the information offered because of stress or personal learning style, as was discussed above. Many informal caregivers told researchers that they had much higher satisfaction once their care was turned over to a hospice palliative care program.

Interestingly, an Ipsos-Reid poll conducted in 2004 found that pharmacists were an important source of information about care, particularly for older Canadians.

Books, video and film

There are many books for informal caregivers, ranging from practical advice to personal accounts of the experience. Libraries, bookstores and the internet are sources of information on books, video and film (DVD). Health care professionals and volunteers are usually willing to recommend books that are well regarded as helpful for informal caregivers.