Hospice care support priorities and perceptions of family caregivers of individuals with end-stage heart failure in China: a qualitative study.

OBJECTIVES

To gain an in-depth understanding of the real support priorities and perceptions of caregivers of individuals receiving care with end-stage heart failure regarding hospice care.

DESIGN

A qualitative descriptive approach was employed.

PARTICIPANTS AND

SETTING

Using a purposive sampling approach, 16 primary caregivers of individuals receiving care with end-stage heart failure from a tertiary hospital in Hangzhou, Zhejiang province, were selected as interview participants. A semi-structured interview outline based on literature review was used to conduct face-to-face interview. Tape-recorded data with notes were transcribed, and the content analysis method was applied to analyse the data and distil themes.

RESULTS

After integration and analysis of 16 interview transcripts (n=16), the thematic analysis resulted in four themes supporting the overall findings, including seeking collaborative decision-making in palliative care, demand for appropriate healthcare resources, search for emotional respite and support in hospice settings and desire for knowledge and information about hospice care and heart failure. Each theme encompasses two subthemes.

CONCLUSIONS

Caregivers of individuals receiving care with end-stage heart failure have multiple care responsibilities and diverse support priorities. Medical personnel should be aware of the burden that family caregivers bear and provide more targeted and individualised assistance to the caregiver. At the organisational level, administrators support priorities to establish comprehensive, lifelong and compassionate hospice services to ensure that the quality of life for caregivers and the quality of care for individuals receiving care can be further enhanced.