Journey to inpatient hospice care: A qualitative study on the decision-making process of Chinese family caregivers of persons with terminal cancer
Date Issued
2024
Publisher
Elsevier BV
Journal
ISSN
0738-3991
1873-5134
Citation
Patient Education and Counseling, 2024, vol. 119, article no. 108072.
Type
Peer Reviewed Journal Article
Abstract
Objective
To understand family caregivers’ decision-making process to place their family members with terminal cancer in inpatient hospice care, especially in the social-cultural contexts whereby the caregivers have a dominant say about the care of their seriously ill family members.
Methods
A qualitative study with a phenomenological approach was undertaken to understand the lived experience of caregivers of persons with terminal cancer in the decision-making process. Semi-structured qualitative interviews were conducted with a purposive sample of 17 caregivers in Shanghai, China. Thematic analysis was used to analyze the data. Results
The caregivers underwent a winding and socioculturally mediated four-stage process. The stages are (i) trigger for alternatives: lost hope for a cure, (ii) meandering the see-saw process, (iii) the last straws: physical limitations and witnessing unbearable suffering, and (iv) the aftermath: acceptance versus lingering hope. Caregivers’ attitudes towards death and their family members with advanced cancer expressed care wishes influence the state of the aftermath. Conclusions
Chinese sociocultural values and beliefs about caregiving and death provide insightful explanations for the observed process.
Practical implications
Training healthcare professionals in cultural competence, developing an effective hospice referral system, and delivering socioculturally acceptable death education are critical interventions to facilitate better decision-making experiences.
To understand family caregivers’ decision-making process to place their family members with terminal cancer in inpatient hospice care, especially in the social-cultural contexts whereby the caregivers have a dominant say about the care of their seriously ill family members.
Methods
A qualitative study with a phenomenological approach was undertaken to understand the lived experience of caregivers of persons with terminal cancer in the decision-making process. Semi-structured qualitative interviews were conducted with a purposive sample of 17 caregivers in Shanghai, China. Thematic analysis was used to analyze the data. Results
The caregivers underwent a winding and socioculturally mediated four-stage process. The stages are (i) trigger for alternatives: lost hope for a cure, (ii) meandering the see-saw process, (iii) the last straws: physical limitations and witnessing unbearable suffering, and (iv) the aftermath: acceptance versus lingering hope. Caregivers’ attitudes towards death and their family members with advanced cancer expressed care wishes influence the state of the aftermath. Conclusions
Chinese sociocultural values and beliefs about caregiving and death provide insightful explanations for the observed process.
Practical implications
Training healthcare professionals in cultural competence, developing an effective hospice referral system, and delivering socioculturally acceptable death education are critical interventions to facilitate better decision-making experiences.
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