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

Introduction

This brief report summarizes much of what we know about the information needs of informal caregivers -- sometimes described as families, friends and partners of the ill person -- who are involved in providing support to a critically ill loved one. The report is based on recent work by a number of Canadian researchers.

Each year more than 220,000 Canadians die. If we estimate that each person has five family members and friends, we realize that more than one million Canadians a year are affected by the death of a loved one. Many of those most closely affected are informal caregivers. Though informal caregivers are mostly women, there are indications that men are becoming more involved as caregivers. Researchers estimate that between 75 and 90 percent of care provided in the home is done by informal caregivers.

Throughout their caregiving experience and after the death of the loved one, informal caregivers need information of all kinds. Research indicates that informal caregivers are unaware of services that could help them and, because they have no information about these services, they do not ask for them. Some information needs are shared by most informal caregivers, such as the need to know how the person living with the illness will have their pain controlled, while other information needs are as varied as the particular situation being experienced and personal differences in learning style.

This report focuses strongly on the information needs of informal caregivers who are providing end-of-life care in their home because they often deal with many challenges and questions on their own. The report defines some terms commonly used in end-of-life care such as informal caregiver and hospice palliative care. It describes some of the common situations faced by informal caregivers and the information needs that informal caregivers have in those situations. The report touches on gaps in information for informal caregivers and includes suggestions that researchers have made for filling these gaps. The report ends with a list of resources that informal caregivers can use as starting points in their search for information.

Methodology

This report is based on the work of Stajduhar, research papers written for Health Canada by Dunbrack and Ashpole, the work of Heyland with a cross-Canada team of researchers (2004) and on a review of websites and publications listed in the resources section below.

Terminology

Many terms are used when we talk about care at the end of life. Here are definitions for some of the most common terms.

An informal caregiver is a family member, partner, friend, or neighbour who provides care for a critically ill loved one without pay. Informal caregivers are sometimes described as "loved ones". Family is considered to include the biological family of "blood relatives" as well as the "family of choice" based on close relationships with the person who is ill. An informal caregiver may provide care and support at home or in another care setting where the critically ill person is receiving care. Informal caregivers are sometimes called family caregivers with the understanding that "family" can include anyone that the ill person or relatives consider to be close.

A formal caregiver or care provider is a paid professional who provides care, such as a doctor, nurse, social worker, or home care worker (sometimes called a homemaker).

Volunteers are trained members of the community who donate their time without pay. They are often part of a hospice palliative care team.

Hospice palliative care is defined by the Canadian Hospice Palliative Care Association as care aimed at relief of suffering and improving the quality of life for persons who are living with or dying from advanced illness or are bereaved. Hospice palliative care is sometimes referred to as palliative care. Hospice palliative care can be provided in many settings: hospital, residential hospice, nursing home, long-term care facility or at home.

End-of-life care includes all forms of care received at the end of life, including hospice palliative care, acute care (intensive care), and so on.

Home care is care provided in the home, usually with support from public or private health care providers. Community-based care is care provided in the community rather than in hospital; it can include home care or care in a long-term care facility or group home.

A residential hospice is a community-based facility offering hospice palliative care for live-in patients and support for their loved ones.

Respite is defined by the Canadian Association for Community Care as a break, time out or relief for the informal caregiver.