Factors Influencing Family Caregivers' Ability to Cope With Providing End-of-Life Cancer Care at Home

Kelli I. Stajduhar, PhD, RN; Wanda Leigh Martin, MN, RN; Doris Barwich, MD; Gillian Fyles, MD

Disclosures

Cancer Nurs. 2008;31(1):77-85. 

In This Article

Abstract and Introduction

Dying at home is a goal promoted by many healthcare providers and governments as a way to enhance the dying experience for cancer patients and their family members. A key element to realizing this goal is the availability of a family member who is willing to provide care at home. Little research has been conducted on the factors that influence family caregivers' ability to cope with providing end-of-life cancer care at home. The purpose of this qualitative study was to describe factors influencing family caregivers' ability to cope with providing such care. An interpretive descriptive research design guided this study. Semistructured interviews with 29 active family caregivers were conducted and thematically analyzed. Our findings suggest 5 factors that influenced the caregivers' ability to cope: (1) the caregiver's approach to life, (2) the patient's illness experience, (3) the patient's recognition of the caregivers' contribution to his or her care, (4) the quality of the relationship between the caregiver and the dying person, and (5) the caregiver's sense of security. Findings provide important information to assist in informing health services and policies directed at enhancing family caregivers' coping abilities.

One of the important social changes of the last quarter century has been a shift in the setting for healthcare delivery away from institutions. There are few issues that embody the meaning of healthcare reform more than the move from facility-based to home-based care. Demographic shifts in the population, changing public expectations, technological and scientific advancements, and burgeoning costs are all factors that are expected to contribute to continued growth within the home care sector. Thus, the organization and delivery of home care have become a major health policy issue in many industrialized countries.[1,2,3] End-of-life cancer care serves as a case in point. With the population aging, the growing number of people diagnosed with end-stage cancer, and a large majority of dying patients reporting that they prefer to spend their final days at home,[4,5,6] government policies are pressing for more and better care of the terminally ill in the community.[7]

One consistently reported predictor of having a dying person be cared for at home is the availability of a family caregiver.[8,9] Family caregivers are typically responsible for providing most of the physical and emotional care of the patient, for managing complex symptoms in the home, and for organizing and coordinating health services on behalf of the dying person.[10,11] Often referred to as the "hidden patients,"[12] family caregivers are expected to take on more and more of the care that was once provided by nurses in the home,[13]sometimes feeling pressured to do so[14] and ambivalent about it.[15]

It is well established that caregiving places considerable burdens on family caregivers.[16,17,18] A recent review of the literature highlighted the nature and extent of physical and psychosocial morbidity and economic disadvantage that home-based palliative caregivers experience as a direct result of their caregiving role.[19] Many caregivers experience moderate to severe sleep problems.[20] Research suggests that up to 50% of palliative family caregivers report chronic illnesses of their own,[21] and prevalence rates for depression and anxiety have been reported to be as high as 39% and 46%, respectively.[22] Caregivers report a lack of control over their everyday lives, restrictions on leisure time, and disruptions in personal routines.[23,24] The economic costs associated with home-based care are also substantial. A study in the United States suggests that family caregivers spend 10% of their annual household income on healthcare costs associated with caring for the terminally ill person.[25] In Canada, estimates suggest that family caregivers contribute about Can $6,000 of unpaid caregiving labor in the final 4 weeks of a patient's life.[26]

As more and more of the responsibility for care of the dying is placed on family caregivers, there is growing concern about their ability to cope with the demands of caregiving.[27,28] Some research has examined the strategies that family caregivers of patients with cancer use to cope with such demands. Hull,[29] for example, conducted interviews with 14 family caregivers of cancer patients and found that creating windows of time for themselves, engaging in social comparison, and using cognitive reformulation helped caregivers cope with and minimize the stress of caregiving. Steele and Fitch[30] assessed the coping strategies of 20 family caregivers of home hospice patients with cancer and reported that keeping busy, thinking positively, and learning more about the problem were the most frequent coping strategies used. Gaining information from health professionals, talking things over with family, and using avoidance and denial to deal with stress are also reported to assist caregivers in coping with end-of-life caregiving.[30,31,32]

Although these studies provide an understanding of the coping strategies used, only 1 study was found that focused specifically on factors that influence caregivers' ability to cope with providing end-of-life cancer care at home. In a qualitative secondary analysis of interview data from 14 family caregivers of advanced cancer patients, Strang and Koop[33] found that the characteristics of the caregiver (ie, strength from within, self-knowledge, decision-making ability, problem solving and attitudes, values, and beliefs) and the dying patient (ie, accepting his or her impending death, understanding the caregiver's needs, attitudes, values, and beliefs), as well as formal and informal support, facilitated the caregivers' ability to cope. Factors that interfered with the caregivers' abilities to carry on in their circumstances included intrusive help offered by extended family members and lack of coordination and insufficient health services. Findings from this study provide an important beginning point. However, for patients with advanced cancer who wish to be cared for at home and for family caregivers who desire to provide such care, more information is needed if we are to inform the development of health services and interventions aimed at reducing the burdens associated with providing end-of-life cancer care at home and potentially enhancing family caregivers' experiences with care provision. Therefore, the purpose of this investigation was to describe factors that influence family caregivers' ability to provide end-of-life cancer care at home.

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