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

A synthesis report prepared for
Health Canada by
Janet Dunbrack
March 2005

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(184 K)

Table of Contents

Executive Summary
Introduction
Methodology
Terminology
Situations faced by informal caregivers
Information needs of informal caregivers
The right to ask questions or ask for help
Recognizing that needs evolve
Recognizing the diversity of learning styles and needs
Common information needs
Types of information services available
Pan-Canadian information services
Provincial/territorial information services
Other information sources
Gaps in information
Lack of service coordination
Lack of 24/7 information and service
Appropriate and timely information
Care provider communication skills and time constraints
Emotional and spiritual support
Diverse cultural needs
Conclusion
Information resources for informal caregivers: getting started

Executive summary

Each year more than 220,000 Canadians die. Many die in hospital or other facilities but an increasing number are dying at home as the publicly funded health care system emphasizes home-based care in an effort to contain costs. As a result, the role of the informal caregiver - the families and friends of the ill person who provide care and support to their loved one -is becoming more prominent in end-of-life care. Research indicates that between 75 and 90 percent of home care is provided by informal caregivers. Whether their loved one is in a facility or at home, informal caregivers need information of all kinds in order to provide care for the ill person, practise self-care and resolve their bereavement after the death occurs.

Informal caregiving at the end of life can involve the transition to a new health care team and a new set of services as the care focus changes to comfort rather than cure. Informal caregivers need information in order to deal with new realities and make informed decisions. In addition to adjusting emotionally to an approaching death, the informal caregiver faces new demands in caregiving involving new situations and symptoms that may require their intensive involvement, particularly if the ill person is at home. Many informal caregivers may wish to provide care at home while others are uncertain of their physical, financial and emotional ability to do so. Some informal caregivers report that they felt they had no choice in the matter because of pressure from the health care system or a lack of facility-based beds. A further influence may be the desire to do the right thing, which is perceived as providing care at home. The idealization of home care by inexperienced informal caregivers or by professional care providers may further add to the pressure to say Yes to home care or to continue with home care in the face of exhaustion or financial distress. Informal caregivers need adequate, realistic information in order to make these choices.

Appropriate and timely information is an essential element in a positive caregiving experience. Those who receive the services of a hospice palliative care program report higher degrees of satisfaction with respect to adequate information than those who do not receive these services. Some fundamental attitudes influence the informal caregiver's ability to access information:

• feeling entitled to ask questions or ask for help
• recognizing that information needs change with time
• recognizing the diversity of personal learning styles and needs.

The most common information needs of family caregivers involve:

• pain management
• navigating a complex health care system with a variety of uncoordinated services
• bereavement support
• respite (time off for the informal caregiver)
• hands-on, practical caregiving information
• what to expect as the illness progresses
• dealing with the various members of the professional and volunteer care team: who does what?
• legal and financial questions
• emotional and spiritual support
• complementary and alternative therapies
• culturally appropriate services.

A number of information resources exist to meet the needs of informal caregivers. They include personal communication with health care professionals and volunteers, websites, toll-free telephone services, printed material, videos and DVDs. An increasing number of Canadians of all ages use the internet as a source of material although they have concerns about the validity of information from some websites. A list of reliable information resources for informal caregivers is given at the end of this report.

There are a number of gaps or challenges that create barriers for informal caregivers in their search for information. These include:

• lack of coordination between service providers
• lack of 24/7 information or services
• information that is not given in an appropriate or timely manner
• professional care provider communication skills and time constraints
• lack of adequate emotional and spiritual support
• meeting the diversity of cultural needs.

As informal caregivers take on a growing share of end-of-life care, they require appropriate and timely information so that they can fulfill the role they have chosen or assumed. A realistic assessment of their needs and the development of effective ways of communicating information will help them to both provide and receive high-quality end-of-life care.