Support needs of informal hospice caregivers: a qualitative study

Informal caregivers of hospice patients experience multiple stressors that can negatively impact physical, psychological, and emotional health. The goal of this qualitative study was to understand caregivers' needs to inform the feasibility, structure, and content of a telephone-based counseling intervention.

Focus groups and interviews with 36 former hospice caregivers and 11 hospice staff from 6 hospices were conducted. Interviews and focus groups were audio-recorded, transcribed, and analyzed using a constant comparative approach.

Key content areas included coping, emotional support, self-care, logistical issues, and bereavement. Respondents supported telephone-based counseling, appreciating its relative anonymity and convenience. It was recommended that calls be initiated by the counselor, on a weekly basis, and that one counselor be assigned to each caregiver. Hospice staff emphasized the need to coordinate telephone counseling with hospice care, scheduling around and communicating with hospice staff. Most caregivers indicated that they would participate in telephone-based counseling were it available; hospice staff thought that half of caregivers would participate. A pervasive theme was that "there can never be enough support for a caregiver."

Informal caregivers of hospice patients have support needs that are amenable to telephone-based counseling designed to be complementary to existing hospice services. Based on these qualitative findings, we are pilot-testing a telephone-based cognitive-behavioral stress management program for informal caregivers of hospice patients.