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

Gaps in information

Research shows that many health care providers and information services do a good job of providing information, with hospice palliative care services in particular receiving high satisfaction ratings from informal caregivers. Other research shows that informal caregivers are not entirely satisfied in their need to receive adequate information. In many interviews with researchers, informal caregivers spoke of the following gaps.

Lack of service coordination

Recent research has shown that having an adequate plan of care and health services available to look after the patient at home upon hospital discharge is considered extremely important by informal caregivers and that they are often not satisfied in this respect.

Lack of coordination between health care services is a major source of frustration for informal caregivers, particularly when the ill person is transferred from hospital to home. Many informal caregivers report that they spend precious time calling many services to find out who does what and how to receive their services. They report that professionals working for one service appear to be unaware of the details of other services and are therefore unable to provide information or advice. Informal caregivers suggest that a single entry point for all services would be an enormous help to them, or a person who would act as guide and navigator through the complex system. Further, informal caregivers suggest that a "map" of the system and the many services available would help them to know what is available and how to access it.

Lack of 24/7 information and service

Pain or other symptoms can break through at any time outside normal professional working hours. Informal caregivers express concern about who to call for information and help at night and on weekends when unexpected things happen. Some informal caregivers report being told by health care providers to take the ill person to a hospital emergency department, which has caused anguish given the frail state of the ill person and the prospect of dying in a busy hospital corridor. Those registered with hospice palliative care programs report higher satisfaction because these programs are often reachable on a 24/7 basis. The problem of lack of information or service outside normal working hours can only be solved by investing in additional staff and services, which involves the larger question of cost containment by health care systems.

Appropriate and timely information

Effective communication of information often depends on knowing what is timely and appropriate. Good information can be lost or not absorbed if it is given in too large doses when the informal caregiver is not able to receive it because of feeling overwhelmed from dealing with too many things at once. Information can also be lost if a caregiver who has, for example, a learning style that works best in personal conversation is given instead a stack of reading material. Many informal caregivers report that they value personal communication with a professional care provider or volunteer but that they need to supplement this communication with a variety of other types of information. Many say that they also need web-based reading or printed pamphlets supplemented by film or video in order to help them absorb the same information better and because they can refer back to this material again and again and absorb it at their own pace. They also point out that they are more open to information at some stages of caring for the ill person than at other times. These findings suggest that those dispensing information need to be aware of and sensitive to the reality of different personal learning styles, the variable openness to information of informal caregivers at different times and the need to back up one form of communication with another. It could also be useful for care programs to provide orientation to informal caregivers on how to access the many forms of information available.

Care provider communication skills and time constraints

Most research involving professional care providers or informal caregivers indicates that professional care providers often have limited time to spend in communication because of their heavy work loads. Some professionals admit that they find it hard to communicate bad news. They may also fall back on specialized professional vocabulary without being aware that the informal caregiver may not understand what is being said. Informal caregivers report that communication often receives short shrift from the professional care team. This transmits the message that professionals do not consider it important to brief the informal caregiver or involve them in informed decision making. Many informal caregivers and volunteers report that the volunteer is often the person they will turn to for information or support when they cannot obtain it from the professional team.

Those providing care can improve the informal caregiver's access to information by both improving the communication skills of the care team and recognizing that informal caregivers may sometimes need encouragement to overcome their reluctance to ask questions and "bother the busy professional". Professional training in recent years places a higher value on effective communication than in the past. This should have the gradual effect of improving communication between professional care providers and informal caregivers as new graduates enter their professions. The role of volunteers in bridging the communication gap should also be recognized and possibly enhanced.

Emotional and spiritual support

Emotional and spiritual support are real needs of informal caregivers that are often neglected because: the caregiver is so preoccupied with practical details that they push aside their other needs; they feel guilty about asking for personal emotional support when their loved one may be living with distress that seems more important than their own needs; or they feel embarrassed about needing emotional support. Information about sources of emotional and spiritual support may be available, but informal caregivers may be reluctant to use it. Volunteers often fill the gap because they have time and are trained listeners, as are the staff of telephone information services. Informal caregivers may also feel reluctant to turn to chaplains for spiritual support if they do not belong to a faith community. In contrast to hospitals, most home care service teams do not include spiritual support workers.

In order to fill this gap, both informal caregivers and those who provide service can recognize that the need for emotional or spiritual support is real even if it is not directly expressed. Respectful, non-intrusive ways of offering support can be learned. Volunteers can play an important role.

Diverse cultural needs

Every needs assessment shows the importance of being aware of diverse cultural needs, particularly in urban areas with many ethnocultural communities, and of providing culturally-appropriate information. This is an ongoing challenge for all service providers which involves working with ethnocultural communities to develop resources. Training for professionals and volunteers in working with diverse communities is essential.

Conclusion

The information needs of informal caregivers are many and diverse. The need to receive adequate information is an area of concern for informal caregivers and a challenge to service providers in the health care system. The growing emphasis on home-based care will result in a growing need for informal caregiver information as family members take on a greater share of end-of-life care. If informal caregivers are key members of the caregiving team, they require appropriate, timely information and support so that they can fulfill the role they have chosen or assumed. A realistic rather than idealized look at the situation of informal caregivers is required and the development of effective means of communicating information is needed. Otherwise a too-heavy burden will be placed on informal caregivers and all those involved in quality end-of-life care will suffer.

Information resources for informal caregivers: getting started

The following reliable information resources are intended to be a starting point for informal caregivers. Many of these resources link to other sources of information.

Employment Insurance Compassionate Care Benefits

The federal Employment Insurance program provides up to six weeks of benefits for those in the work force who must leave their jobs to care for a family member who is expected to die within 26 weeks. The definition of family is restricted to close relatives and does not include brothers and sisters. Further information is available at Government of Canada Employment Insurance offices or online at:
www.hrsdc.gc.ca/asp/gateway.asp?hr=/en/ei/
types/compassionate_care.shtml&hs=aed.

Useful websites and telephone-based services

Canadian Hospice Palliative Care Association (1-800-668-2785)

www.chpca.net. The Canadian Hospice Palliative Care Association website contains information for informal caregivers and is a good starting point for seeking information because of its links to many other web resources, including the provincial hospice palliative care associations. CHPCA offers a free guidebook for informal caregivers, A Caregivers Guide: A Handbook about End-of-Life Care, that can be ordered online. The website also has a directory of hospice palliative care services in Canada.

Canadian Virtual Hospice (1-866-288-4803)

www.virtualhospice.ca. The Canadian Virtual Hospice offers information for informal caregivers, chat rooms, bulletin boards and the ability to ask general questions online of a health care professional.

Living Lessons

www.living-lessons.org. This website has information about hospice palliative care and offers resources for informal family caregivers. The Living Lessons handbook, A Guide for Caregivers and 10 Tips for Caregivers, are available on the website. A printed copy of the guide for caregivers can be ordered from the Living Lessons telephone information line. The national toll-free information line is 1-877-203-4636. This line is staffed during weekday working hours in the Eastern Time zone and has an answering machine to take after-hours messages.

Hospice Association of Ontario: End-of-Life Information Service

www.hospicelifeline.com. This website has on-line information for informal caregivers and offers confidential telephone help and information during weekday working hours. Messages can be left on the answering service at other times. The toll-free (in Ontario) number is 1-800-349-3111, ext. 28 or (416) 979-9779.

Books, videos and films

The best advice is to consult a trusted professional or volunteer or a library or bookstore for current titles because new books on end-of-life care and informal caregiving are released each year. Several internet-based bookstores such as Chapters.ca or Amazon.ca sell resources. Canadian Harry Von Bommel has written several books about informal caregiving end-of-life caregiving and provides references to other books and resources on his website at www.legacies.ca.