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Caregiving near the end of life: Unmet needs and potential solutions

Published online by Cambridge University Press:  29 January 2005

PATRICIA A. MANGAN, ,
KATHRYN L. TAYLOR ,
K. ROBIN YABROFF ,
DAVID A. FLEMING  and
JANE M. INGHAM
PATRICIA A. MANGAN,
Affiliation:
Lombardi Cancer Center Palliative Care Program, Georgetown University, Washington, DC Cancer Control Program, Lombardi Cancer Center, Department of Oncology, Georgetown University, Washington, DC
KATHRYN L. TAYLOR
Affiliation:
Cancer Control Program, Lombardi Cancer Center, Department of Oncology, Georgetown University, Washington, DC
K. ROBIN YABROFF
Affiliation:
Cancer Control Program, Lombardi Cancer Center, Department of Oncology, Georgetown University, Washington, DC
DAVID A. FLEMING
Affiliation:
Center for Clinical Bioethics and Department of Internal Medicine, Georgetown University, Washington, DC
JANE M. INGHAM
Affiliation:
Lombardi Cancer Center Palliative Care Program, Georgetown University, Washington, DC Cancer Control Program, Lombardi Cancer Center, Department of Oncology, Georgetown University, Washington, DC
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Abstract

Objective: A key aspect of the role of clinicians caring for patients in the setting of advanced illness focuses on attending to the needs of informal caregivers during the end-of-life period. The purpose of this study was twofold: (1) to complement and enrich existing quantitative findings regarding caregiver burden near the end of life, and (2) to identify potential solutions to caregivers' unmet needs in an effort to assist clinicians in the development of clinical interventions.

Methods: This qualitative study, using focus groups and content analysis of transcripts, was conducted in a comprehensive cancer center in Washington, DC. Seven focus groups were held: three with recently bereaved caregivers and four with active caregivers of patients with metastatic cancer and an expected survival of 6 to 12 months.

Results: Data were stratified into two broad categories: (1) general problems and (2) behaviors/activities that were helpful/would have been helpful in alleviating these problems. Within each of these two categories, five subcategories emerged: medical care (including provision of information, coordination of care, bedside manner, satisfaction with care), quality of life (including well-being, role adjustments), help from others (including practical assistance, social support), positives of caregiving, and unsolicited themes (including job flexibility, impact of the disease on the family, informational needs, relationship with patient).

Significance of results: Results suggest caregivers may benefit from more information about patient prognosis and hospice, attention to quality-of-life issues, and enhanced, direct communication with clinicians. Although information of this nature is likely to be known to palliative care clinicians, the specific details and verbal insights provided by caregivers give an important voice to existing quantitative data and may provide more detailed information to assist palliative care clinicians seeking to develop interventions to meet caregiver needs during the period near the end of life.

Keywords

End-of-lifeCaregiverPalliative careQualitative analysisFocus groups
Type
Research Article
Information
Palliative & Supportive Care , Volume 1 , Issue 3 , September 2003 , pp. 247 - 259
Copyright
© 2003 Cambridge University Press

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