Does the Experience of Caring for a Severely Disabled Relative Impact Advance Care Planning? A Qualitative Study of Caregivers of Disabled Patients

Fu-Ming Chiang, Jyh-Gang Hsieh, Sheng-Yu Fan, Ying-Wei Wang and Shu-Chen Wang
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Fu-Ming Chiang: Department of Nursing, Institute of Medical Sciences, Tzu Chi University, Hualien Tzu Chi Hospital, Buddhist Tzu Chi Medical Foundation, Hualien 97002, Taiwan
Jyh-Gang Hsieh: Department of Family Medicine, Institute of Health and Welfare Policy, National Yang-Ming University, Hualien Tzu Chi Hospital Buddhist Tzu Chi Medical Foundation, Hualien 97002, Taiwan
Sheng-Yu Fan: Institute of Gerontology, College of Medicine, National Cheng Kung University, Tainan 70101, Taiwan
Ying-Wei Wang: Institute of Medical Sciences, School of Medicine, Tzu Chi University, Hualien 97004, Taiwan
Shu-Chen Wang: Department of Nursing, Hualien Tzu Chi Hospital Buddhist Tzu Chi Medical Foundation, Hualien 97002, Taiwan

IJERPH, 2020, vol. 17, issue 5, 1-11

Abstract: The aging of the Taiwanese population has become a major issue. Previous research has focused on the burden and stress faced by caregivers, but has not explored how the experience of these caregivers influences decisions of advance care planning (ACP). Semi-structured and in-depth interviews were conducted. Qualitative content analysis was used to identify important themes. Five themes and fourteen sub-themes were identified: (1) Past experiences: patient wishes, professional recommendations, and expectation about disease progress; (2) Impact of care on family members: positive affirmation, open-minded life, social isolation and health effects, and financial and life planning effects; (3) Attitude toward life: not forcing to stay, and not becoming a burden, (4) Expected proxy dilemmas: torment between doing or not, seeing the extension of suffering and toil, and remorse and self-blame; (5) Expectation of end of life (EOL) care: caregiver’s experience and EOL care decisions, and practicality of EOL decision making. After making multiple medical decisions for their disabled relatives, caregivers are able to calmly face their own medical decisions, and “not becoming a burden” is their primary consideration. It’s suggested that implementation of shared decision-making on medical care for patients with chronic disability will not only improve the quality of their medical care but also reduce the development of remorse and guilty feelings of caregivers after making medical decisions.

Keywords: advance care planning; caregiver; end-of-life decision (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2020
References: View complete reference list from CitEc
Citations: View citations in EconPapers (1)

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