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

Situations faced by informal caregivers

Informal caregivers provide care and support in a variety of settings, including the home, the long-term care facility, hospital or residential hospice. Those providing care at home will be involved in most aspects of care for the ill person, while those providing support to an ill person in a facility may be involved in feeding, clothing, exercising, care decisions and simply being with their loved one.

Informal caregivers may be involved in providing care for a period of months or years dating from the diagnosis of a critical illness and they may stay involved in caregiving until the loved one dies. This report concentrates on the information needs of informal caregivers providing care during the end stage of the loved one's life.

Once it has been determined that the ill person cannot be cured and that death is likely to happen within a few weeks or months, the informal caregiver is faced with a new situation and a new set of questions. The disease-specific organization that may have provided support and encouragement up to that point may not be able to provide support in the end-of-life stage. Many disease-specific organizations focus on finding a cure and supporting people to be survivors. Some persons living with a critical illness and their informal caregivers report feeling abandoned by the organization they had come to rely on even though the organization may have provided a referral to hospice palliative care services. In some cases, informal caregivers find themselves faced with the task of creating a whole new support network in addition to concerning themselves with the new details of caregiving at the end of life.

As the ill person and the informal caregiver enter the end-of-life stage, they are each adjusting to the reality that death will occur in the foreseeable future and that the loved one's physical and mental state may undergo significant changes as death approaches. This can be a major emotional challenge that requires time and support to come to terms with. Often in the preoccupation with the practical details of caregiving, the informal caregiver's emotional work is put aside only to surface in anxiety, fatigue, and depression or in physical symptoms such as headaches or muscle cramps. In addition to emotional working-through, spiritual concerns may come to the fore and be troubling to those who do not have adequate support. Although most of the information needs of informal caregivers concern practical matters, emotional and spiritual needs are also real. Some organizations that provide information services for informal caregivers report that informal caregivers may use a practical question as a way of finding a sympathetic ear for their emotional concerns in order to deal with the isolation and uncertainty of their situation.

Before we look in more detail at the information needs of informal caregivers, it is important to say a few words about choice, particularly concerning the choice to provide care in the home or to continue providing care at home as the illness progresses. Informal caregivers may make decisions about providing care in the absence of adequate information about what is involved. Realistic information about informal caregiving in the home could help them to make choices and assess whether they are able to put in place the resources they will need. In many cases, the informal caregiver may not feel they have the choice to say No to providing home care. Saying Yes to home care can lead to great responsibility because a high proportion of care in the home is provided by the informal caregiver rather than professional workers. The financial burden of home care can also be great because in many Canadian provinces and territories, drugs, supplies and nursing or care hours in excess of those provided by the health care system must be paid for by the family.

Research shows that women in particular feel that providing home care is expected of them, and they assume that they must take on the task regardless of whether they feel they can actually cope with it. This is true even for women who have to work to provide family income, who may have childcare responsibilities, or who may be frail and in poor health themselves.

As an illness progresses, informal caregivers may feel that they cannot cope any longer with care at home. They may experience guilt about these feelings, particularly if they see this as a failure or the breaking of a promise to the loved one. Informal caregivers report that the professional health care team may minimize the stress or burnout reported by informal caregivers and encourage them to "just keep going". This links to the issue of the health care system's focus on home care as a cost-saving alternative to publicly funded facility-based care and the loss of alternatives to home care as the number of facility-based beds is reduced.

In some cases, families may receive adequate support from publicly-funded home care services. In many cases, families who provided care at home reported that they did not receive adequate support and had to hospitalize their loved one when they could no longer cope. Some research indicates that the public health care system and many Canadians have an "ideology" of believing that home is the best place to receive care when the reality of informal caregiver experience indicates that more choices are needed because not all families can cope financially, emotionally or physically with the challenges of being at-home informal caregivers. The idealization of home care by the public health system and by inexperienced informal caregivers may also be related to an idealization of the concept of home, a concept that does not match current reality. Today most women work, families can be widely dispersed across Canada or around the world and many older people live alone, without the support of an extended family.

Information needs of informal caregivers

Appropriate and timely information can make the difference between a positive caregiving experience and a distressing one. Recent research reveals that informal caregivers attach high importance to the need to receive adequate information but that they are often not completely satisfied on this score.

As family members become involved in caregiving, particularly in the home, they are faced with new and sometimes bewildering situations every day. Knowing which questions to ask may be daunting in itself, as these informal caregivers said:

I didn't know what information I needed or what questions I should have asked. I was facing something I hadn't experienced before.

You don't know what you don't know.

Before we discuss the specific information needs of informal caregivers, it is important to note that there are some fundamental attitudes that influence the informal caregiver's ability to access information.

The right to ask questions or ask for help

One of the hurdles faced by some informal caregivers is their reluctance to ask questions. Some informal caregivers will be assertive in asking questions while others will be more hesitant, especially if they feel that "the doctor is too busy" or if they have tried to ask questions and not received answers that satisfied them. Professional care providers have different degrees of openness to questioning and different levels of skill in responding to questions. Health care professionals are busy and some may not consider communication with informal caregivers to be of high importance, while others may feel uncomfortable about delivering bad news or dealing with issues with emotional content. These attitudes communicate themselves to informal caregivers who may feel reluctant to persist with questions. Some informal caregivers report learning to become insistent in asking questions and not stopping until they find satisfactory answers.

Feeling entitled to ask questions has an impact on caregiving. Research shows that families who are well informed are better able to be caregivers and experience less anxiety. Recent research also shows that informal caregivers feel that being involved in decisions about treatment and care is extremely important and that they often feel dissatisfied in this respect. Preserving dignity and autonomy is important for the informal caregiver, as well as the ill person, and feeling that their input or wishes are disregarded by the professional care team can lead to stress, fatigue and discouragement.

Recognizing that needs evolve

It is important to recognize the changing nature of needs for information so that both the informal caregiver and the care team can anticipate and plan for changing needs. As the loved one's illness evolves, the information needs of the informal caregiver will also evolve. The priority one day may be learning about the newest symptoms and how to cope with them while the next day's priority may be dealing with financial arrangements or wills and the day after that may be full of questions about finding respite care for the loved one so that the informal caregiver can have a break. After the death occurs, immediate concerns may be funeral arrangements while longer-term concerns may be finding bereavement support or arranging to go back to paid employment after a leave of absence.

Recognizing the diversity of learning styles and needs

Informal caregivers may need similar kinds of information, but their way of processing information can vary a great deal. Some people are hungry for all the information they can get - from health care professionals, the internet, books, volunteers, and friends. They want to know as much as possible as quickly as possible so that they can feel informed about the situation facing them in order to plan ahead.

Other informal caregivers prefer to receive information in smaller doses, as they feel ready for it, one step at a time. They may consult the same information sources as the information-hungry people, but they may need to have the information packaged and delivered differently so that they can absorb it at their own pace.

Informal caregivers who experience emotional stress or information overload because of the ever-changing nature of their situation may want to receive information, but many have said that they were only capable of remembering a small amount of what they heard or read. Few reported using paper and pen to write down information they were hearing because they had too much on their mind at the time. They preferred to have oral communication supplemented by information in a form that they could go back to again and again so that they could assimilate it when they were able. Many caregivers reported that they were glad to have a pamphlet, book, website or video to refer to over time to refresh their memory or fill in the blanks.

Another factor in absorbing information is the difference between individuals in their learning style: some people absorb information best if they see it in words (books, printed information, and websites) while others absorb best from visual images such as videos or films. Still others absorb information best by hearing it (conversation, cassette tapes, videos, films) while others absorb best by doing (demonstrations or "show me what you mean") and many get the best results from a combination of these approaches. Some hospice palliative care services have stressed the need to make resources available to informal caregivers as early as possible so that they can approach information at their own pace and know that the information is at hand when they need it.

In addition to having personal learning style differences, informal caregivers of diverse ethnocultural backgrounds may require culturally-sensitive approaches and information sources as they try to work with a host of services and care providers who may be of backgrounds different from their own.

Differences in vocabulary between health care providers and informal caregivers can cause similar communication problems. Physicians may use medical jargon that is normal in their culture (the medical world) but incomprehensible to a non-medically trained informal caregiver, no matter how well educated.