Family Caregivers’ Perceptions of Caring for Older Persons in the Palliative Care Stage at Home
Keywords:
Caregivers, End of life care, Geriatrics, Homecare services, Older people, Palliative care, Palliative care nursingAbstract
Palliative care at home for older people in the family context is one of the challenges globally and in Thai society nowadays. Existing palliative care models are not suitable for older people because they need both palliative care and geriatric care, and care is different from younger people because of the nature and duration of illness conditions during older age. Therefore, many family caregivers exert significant burden, responsibility and care tasks for their loved ones and perform a central part of the total care tasks. This study aimed to explore the family caregivers’ perceptions of caring for older people in the palliative care stage at home. This study used a descriptive qualitative design with semi-structured interviews and participatory observation of 10 family caregivers. The caregivers cared for older people in Hat Yai, Songkhla Province, southern Thailand. Data were analyzed using content analysis. Two themes were identified of family caregivers’ perceptions: 1) recognizing limitations in the ability to provide care and 2) feeling burdened by caregiving. The findings enhance the understanding of healthcare providers and the public on the perceptions of family members providing care for older persons with being at the palliative care stage at home. Primary care centers and nursing education should educate and assist nurses to practice appropriate palliative care guidelines to help caregivers in home settings. This will assist nurses with appropriate skills and knowledge to improve service quality and the quality of life of older people and their caregivers.
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29. Speziale HS, Carpenter DR. Qualitative research in nursing: advancing the humanistic imperative. 5th ed. Philadephia: Lippincott Williams & Wilkins 2011.
30. Lincoln YS, Guba EG. Naturalistic inquiry. Beverly Hills,CA: Sage Publications; 1985.
31. Johnson J, Fieler V, Jones L, Walasowicz G, Mitchell M. Self-regulation theory: applying theory to practice. Pittsburgh, PA: Nursing Press 1997.
32. Mollica MA, Litzelman K, Rowland JK, Kent EE. The role of medical/nursing skills training in caregiver confidence and burden: a CanCORS study. Cancer. 2017;123(22):4481-87. doi: 10.1002/cncr.30875.
33. Lia S, Carlos S, Carme F, Pedro N, Mar L, Ana M, et.al. “Living together with dementia”: training programme for family caregivers – a study protocol. Porto Biomed J. 2017;2(6):282-86. doi: 10.1016/j.pbj.2017.04.003.
34. Montgomery R, Gonyea J, Hooyman N. Caregiving and the experience of objective and subjective burdens. Fam Relat. 1985;34:19-26.
35. Nagata C, Yada H, Inagaki J. Exploration of the factor structure of the burden experienced by individuals providing end of life care at home. Nurs Res Pract. 2018;2018:1659040. doi: 10.1155/2018/1659040.
36. Miranda R, Penders YW, Smets T, Deliens L, Miccinesi G, Alonso TV et al. Quality of primary palliative care for older people with mild and severe dementia: an international mortality follow-back study using quality indicators. Age Ageing. 2018;47:824-33. doi: 10.1093/ageing/afy087.
2. World Health Organization. Aging and health. 2021 [cited2021 Oct 5]. Available from: https://www.who.int/news-room/fact-sheets/detail/ageing-and-health
3. National Statistical Office. Survey of the elderly populationin Thailand. 2018 [cited 2021 Sep 27]. Available from:http://www.nso.go.th
4. Plothner M, Schmidt K, Jong LD, Zeidler J, Damm K. Need and preferences of informal caregivers regarding outpatient care for the elderly: a systematic literaturereview. BMC Geriatr [Internet]. 2019 Mar 13 [cited 2021 Oct 7];19(1):82. Available from: https://doi.org/10.1186/s12877-019-1068-4
5. World Health Organization. Palliative care. 2020 [cited2021 Oct 12]. Available from: https://www.who.int/news-room/fact-sheets/detail/palliative-care
6. World Health Organization. Noncommunicable diseases,mortality, and morbidity. 2021 [cited 2021 Oct 12].Available from: https://www.who.int/news-room/factsheets/detail/noncommunicable-diseases
7. American Society of Clinical Oncology. For older adults.2018 [cited 2021 Oct 12]. Available from: https://www.cancer.net/navigating-cancer-care/older-adults
8. Public Health Statistics. Public health statistics 2018.Strategy and Planning Division, Ministry of Public Health;2018.
9. World Health Organization. Dementia. 2021 [cited 2021Oct 13]. Available from: https://www.who.int/newsroom/fact-sheets/detail/dementia
10. Tipseankhum N, Tongprateep T, Forrester, DA, Silpasuwan P. Experiences of people with advanced cancer in home-based palliative care. Pacific Rim Int J Nurs Res. 2016; 20(3):238-51.
11. Heydari H, Hojjat-Assari S, Almasian M, Pirjani P. Exploring health care providers’ perceptions about home-based palliative care in terminally ill cancer patients. BMC Palliat Care [Internet]. 2019 Aug 6. [cited 2021 Oct 7];18:66. Available from: https://bmcpalliatcare.biomedcentral.com/articles/10.1186
12. Lustbader D, Mudra M, Romano C, Lukoski E, Chang A, Mittelberger J, et al. The impact of a home-based palliative care program in an accountable care organization. J Palliat Med. 2017;20(1):23–8. doi: 10.1089/jpm.2016.0265.
13. Bray F, Ferlay J, Soerjomataram I, Siegel RL, Torre LA, Jemal A. Global cancer statistics 2018: GLOBOCAN estimates of incidence and mortality worldwide for 36 cancers in 185 countries. CA Cancer J Clin [Internet].2018 Nov [cited 2021 Oct13];68(6):394-424. Available from: https://pubmed.ncbi.nlm.nih.gov/30207593/
14. Teixeira M, Abreu W, Costa N, Maddocks M. Understanding family caregivers’ needs support relatives with advanced progressive disease at home: an ethnographic study in rural Portugal. BMC Palliative care. [Internet]. May2020.25[cited 2021 Oct 13];19(73). Available from: https://bmcpalliatcare.biomedcentral.com/articles/10.1186/s12904-020-00583-4
15. Barlund AS, Andre B, Sand K, Brenne A. A qualitative study of bereaved family caregivers: the feeling of security, facilitators, and barriers for rural home care and death for persons with advanced cancer. BMC Palliat Care [Internet].2021 Jan 8 [cited 2021 Oct 13];20(1):7. Available from: https://bmcpalliatcare.biomedcentral.com/articles/10.1186/s12904-020-00705-y
16. Gray RS, Pattaravanich U. International and external resources, tiredness and the subjective well being of family caregivers of older adults: a case study from western Thailand, Southeast Asia. Eur J Aging. 2020,17(3):349-59. doi: 10.1007/s10433-019-00544-8.
17. Wu M, Huang S, Tsao L. The life experiences among primary family caregivers of home-based palliative care. Am J Hosp Palliat Care. 2020;37(10):816-22. doi:10.1177/1049909120 907601.
18. World Health Organization. WHO definition of palliative care. 2016 [cited 2021 Oct 2]. Available from: http://www.who.int/ cancer/ palliative /definition/en/
19. Lunney J R, Lynn J, Foley DJ, Lipson S, Guralnik JM. Patterns of functional decline at the end of life. JAMA. 2003;289(18):2387-92. doi: 10.1001/jama.289.18.2387.
20. Chansirikan S. Trap in the past. Palliative and end of life care in Thailand: where are we going? Symposium conducted at the meeting of Mahidol University, Bangkok. 2014.
21. Warring P, Krieger LS. End of life care. In: Mauk KL, editor. Gerontological nursing: competencies for care. Burlington, MA: Jones & Bartlett Learning; 2010. pp. 746-81.
22. Lange J, Grossman S. Theories of aging. In K. L. Mauk (Ed). Gerontological nursing: competencies for care. Sudbury, MA: Jones and Bartlett. 2010. pp. 50-73.
23. Williams GR. Geriatric assessment: precision medicine for older adults with cancer. J Oncol Pract. 2018;14:97-8. doi:10.1200/ JOP.18.00010.
24. Goldberg JI, Burhenn PS, Ginex PK. Nursing education: review of assessment, clinical care, and implications for practice regarding older adults patients with cancer. Clin J Oncol Nurs. 2018;22(6):19-25. doi: 10.1188/18.CJON.S2.19-25.
25. Pender YW, Albers G, Deliens L, Miccinesi G, Alonso TV, Miralles M et.al. End of life care for people dying with dementia in general practice in Belgium, Italy and Spain: a cross-sectional, retrospective study. Geriatr Gerontol Int. 2017;17:1667-76. doi: 10.1111/opn.12050.
26. Twaddle ML. Palliative care delivery in the home. 2021 [cited 2021 Oct 2]. Available from: https://www.uptodate.com/contents/palliative-care-delivery-in-the-home
27. Dannielsen BV, Sand AM, Rosland JH, Forland O. Experiences and challenges of home care nurses and general practitioners in home-based palliative care: a qualitative study. BMC. 2018;17(1):95. doi: 10.1186/s12904-018-0350-0.
28. Franchini L, Ercolani G, Ostan R, Raccichini M, Samolsky-Dekel A, Malerba MB, et. al. Caregivers in home palliative care: gender, psychological aspects, and patient’s functional status as main predictors for their quality of life. Support
Care Cancer. 2020;28:3227-35. doi: 10.1007/s00520-019-05155-8.
29. Speziale HS, Carpenter DR. Qualitative research in nursing: advancing the humanistic imperative. 5th ed. Philadephia: Lippincott Williams & Wilkins 2011.
30. Lincoln YS, Guba EG. Naturalistic inquiry. Beverly Hills,CA: Sage Publications; 1985.
31. Johnson J, Fieler V, Jones L, Walasowicz G, Mitchell M. Self-regulation theory: applying theory to practice. Pittsburgh, PA: Nursing Press 1997.
32. Mollica MA, Litzelman K, Rowland JK, Kent EE. The role of medical/nursing skills training in caregiver confidence and burden: a CanCORS study. Cancer. 2017;123(22):4481-87. doi: 10.1002/cncr.30875.
33. Lia S, Carlos S, Carme F, Pedro N, Mar L, Ana M, et.al. “Living together with dementia”: training programme for family caregivers – a study protocol. Porto Biomed J. 2017;2(6):282-86. doi: 10.1016/j.pbj.2017.04.003.
34. Montgomery R, Gonyea J, Hooyman N. Caregiving and the experience of objective and subjective burdens. Fam Relat. 1985;34:19-26.
35. Nagata C, Yada H, Inagaki J. Exploration of the factor structure of the burden experienced by individuals providing end of life care at home. Nurs Res Pract. 2018;2018:1659040. doi: 10.1155/2018/1659040.
36. Miranda R, Penders YW, Smets T, Deliens L, Miccinesi G, Alonso TV et al. Quality of primary palliative care for older people with mild and severe dementia: an international mortality follow-back study using quality indicators. Age Ageing. 2018;47:824-33. doi: 10.1093/ageing/afy087.
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2021-12-09
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Supaporn K, Isaramalai S- arun, Khaw T. Family Caregivers’ Perceptions of Caring for Older Persons in the Palliative Care Stage at Home. PRIJNR [Internet]. 2021 Dec. 9 [cited 2024 Apr. 16];26(1):161-74. Available from: https://he02.tci-thaijo.org/index.php/PRIJNR/article/view/255284
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