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Future provision of home end-of-life care: Family carers’ willingness for caregiving and needs for support

Published online by Cambridge University Press:  09 December 2020

Wallace Chi Ho Chan Open the ORCID record for Wallace Chi Ho Chan [Opens in a new window]
Wallace Chi Ho Chan*
Affiliation:
Department of Social Work, The Chinese University of Hong Kong, Hong Kong
*
Author for correspondence: Wallace Chi Ho Chan, Department of Social Work, Room 407A, T.C. Cheng Building, United College, The Chinese University of Hong Kong, Hong Kong. E-mail: [email protected]
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Abstract

Objective

This study aimed to examine family carers’ willingness, perceived difficulties and confidence in providing home end-of-life care to family members in future and their needs for support for doing so. Specific focus was on whether significant differences were found between carers of low and high levels of psychological distress.

Method

Family carers who had been providing care to family members living in the community were recruited via a local elderly agency in Hong Kong. A survey was conducted. Carers were asked to complete a questionnaire which included self-developed items, the Hospital Anxiety and Depression Scale, and the Carers’ Support Need Assessment Tool.

Results

Of the 89 participants, 63.8% reported willingness to provide end-of-life care in future (increased to 78.5% if support needs were met), but most perceived it as difficult, and over half were not confident about doing so. The three greatest needs for support in end-of-life care are understanding the relative's illness, knowing what to expect in future, and knowing who to contact if concerned. Participants of the high psychological distress group experienced a significantly greater need for support in “dealing with your feelings and worries” and “looking after your own health.”

Significance of Results

Current family carers may not be ready for future provision of home end-of-life care. Meeting their support needs in providing end-of-life care is crucial to ensure the continuity of care provision. Psychologically distressed carers may often ignore self-care and may need helping professionals’ additional support.

Keywords

Carers’ support needsEnd-of-life caregivingContinuity of care provision
Type
Original Article
Information
Palliative & Supportive Care , Volume 19 , Issue 5 , October 2021 , pp. 580 - 586
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Copyright
Copyright © The Author(s), 2020. Published by Cambridge University Press

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References

Aoun, SM, Grande, G, Howting, D, et al. (2015) The impact of the carer support needs assessment tool (CSNAT) in community palliative care using a stepped wedge cluster trial. PLoS ONE 10, e0123012.CrossRefGoogle ScholarPubMed
Chan, WCH, Epstein, I, Reese, DJ, et al. (2009) Family predictors of psychosocial outcomes among Hong Kong Chinese cancer patients in palliative care: Living and dying with the “support paradox”. Social Work in Health Care 48, 519–532.CrossRefGoogle ScholarPubMed
Chan, CL, Ho, AH, Leung, PP, et al. (2012) The blessings and the curses of filial piety on dignity at the end of life: Lived experience of Hong Kong Chinese adult children caregivers. Journal of Ethnic and Cultural Diversity in Social Work 21, 277–296.CrossRefGoogle Scholar
Chan, CY, Tsang, HH, Lau, C, et al. (2017) Prevalence of depressive and anxiety disorders and validation of the hospital anxiety and depression scale as a screening tool in axial spondyloarthritis patients. International Journal of Rheumatic Diseases 20, 317–325.CrossRefGoogle ScholarPubMed
Crist, JD, Ortiz-Dowling, EM, Shea, KD, et al. (2019) Knowledge gaps about end-of-life decision making among Mexican American older adults and their family caregivers: An integrative review. Journal of Transcultural Nursing 30, 380–393.CrossRefGoogle Scholar
Duggleby, W, Tycholiz, J, Holtslander, L, et al. (2017) A metasynthesis study of family caregivers’ transition experiences caring for community-dwelling persons with advanced cancer at the end of life. Palliative Medicine 31, 602–616.CrossRefGoogle ScholarPubMed
Ewing, G and Grande, G (2013) Development of a carer support needs assessment tool (CSNAT) for end-of-life care practice at home: A qualitative study. Palliative Medicine 27, 244–256.CrossRefGoogle ScholarPubMed
Ewing, G, Brundle, C, Payne, S, et al. (2013) The carer support needs assessment tool (CSNAT) for use in palliative and end-of-life care at home: A validation study. Journal of Pain and Symptom Management 46, 395–405.CrossRefGoogle ScholarPubMed
Fang, ML, Sixsmith, J, Sinclair, S, et al. (2016) A knowledge synthesis of culturally- and spiritually-sensitive end-of-life care: Findings from a scoping review. BMC Geriatrics 16, 107.CrossRefGoogle ScholarPubMed
Gijsberts, M-JH, Liefbroer, AI, Otten, R, et al. (2019) Spiritual care in palliative care: A systematic review of the recent European literature. Medical Sciences 7, 25.CrossRefGoogle ScholarPubMed
Given, BA and Reinhard, SC (2017) Caregiving at the end of life: The challenges for family caregivers. Generations 41, 50–57.Google Scholar
Gomes, B, Calanzani, N, Curiale, V, et al. (2013) Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers. Cochrane Database of Systematic Reviews 6, CD007760.Google Scholar
Hashemi, M, Irajpour, A and Taleghani, F (2018) Caregivers needing care: The unmet needs of the family caregivers of end-of-life cancer patients. Supportive Care in Cancer 26, 759–766.CrossRefGoogle ScholarPubMed
Johnson, MJ, Allgar, V, Macleod, U, et al. (2016) Family caregivers who would be unwilling to provide care at the end of life again: Findings from the health survey for England population survey. PLoS ONE 11, e0146960.CrossRefGoogle ScholarPubMed
Keefe, FJ, Ahles, TA, Porter, LS, et al. (2003) The self-efficacy of family caregivers for helping cancer patients manage pain at end-of-life. Pain 103, 157–162.CrossRefGoogle ScholarPubMed
Leung, CM, Ho, S, Kan, CS, et al. (1993) Evaluation of the Chinese version of the hospital anxiety and depression scale. International Journal of Psychosomatics 40, 29–34.Google ScholarPubMed
McDonald, J, Swami, N, Pope, A, et al. (2018) Caregiver quality of life in advanced cancer: Qualitative results from a trial of early palliative care. Palliative Medicine 32, 69–78.CrossRefGoogle ScholarPubMed
Penrod, J, Hupcey, JE, Baney, BL, et al. (2011) End-of-life caregiving trajectories. Clinical Nursing Research 20, 7–24.CrossRefGoogle ScholarPubMed
Saad, M and de Medeiros, R (2020) Should spiritual care be covered by healthcare insurance and health systems. Journal of Pain and Symptom Management 60, E27–E28.CrossRefGoogle ScholarPubMed
Sarmento, VP, Gysels, M, Higginson, IJ, et al. (2017) Home palliative care works: But how? A meta-ethnography of the experiences of patients and family caregivers. British Medical Journal of Supportive & Palliative Care 7, 390–403.Google ScholarPubMed
Selman, LE, Brighton, LJ, Sinclair, S, et al. (2018) Patients’ and caregivers’ needs, experiences, preferences and research priorities in spiritual care: A focus group study across nine countries. Palliative Medicine 32, 216–230.CrossRefGoogle ScholarPubMed
Seow, H and Bainbridge, D (2018) A review of the essential components of quality palliative care in the home. Journal of Palliative Medicine 21, S-37–S-44.CrossRefGoogle ScholarPubMed
Seow, H, O'Leary, E, Perez, R, et al. (2018) Access to palliative care by disease trajectory: A population-based cohort of Ontario decedents. BMJ Open 8, e021147. doi:10.1136/bmjopen-2017-021147CrossRefGoogle ScholarPubMed
Shek, DTL (2006) Chinese family research: Puzzles, progress, paradigms, and policy implications. Journal of Family Issues 27, 275–284.CrossRefGoogle Scholar
Terzakis, K and MacKenzie, MA (2019) Preparing family members for the death of a loved one in long-term care. Annals of Long-Term Care 27(2), 25–31.Google Scholar
The Economist Intelligence Unit (2015) The 2015 Quality of Death Index: Ranking palliative care across the world. London: The Economist Intelligence Unit.Google Scholar
Washington, KT, Wilkes, CM, Rakes, CR, et al. (2018) Relationships among symptom management burden, coping responses, and caregiver psychological distress at end of life. Journal of Palliative Medicine 21, 1234–1241.CrossRefGoogle ScholarPubMed
Wong, FKY, So, C, Ng, AYM, et al. (2018) Cost-effectiveness of a transitional home-based palliative care program for patients with end-stage heart failure. Palliative Medicine 32, 476–484.CrossRefGoogle ScholarPubMed
Zigmond, AS and Snaith, RP (1993) The hospital anxiety and depression scale. Acta Psychiatrica Scandinavica 67, 361–370.CrossRefGoogle Scholar