Prevalence of and Risk Factors for Caregiver Burden in Palliative Care in Thailand

Authors

Keywords:

caregiver, burden, burnout, palliative care, hospice care

Abstract

Objective  Caregivers are highly important in both conventional and palliative care.  Their responsibilities, which include biological, psychological, and social aspects, can lead to stress and other complications. The objectives of this study were to determine (i) the prevalence of caregiver burden in palliative care and its severity, and (ii) risk factors associated with caregiver burden in palliative care settings.

Methods  This cross-sectional study was conducted with palliative care patients and main caregivers in palliative care in both in- and out-patient departments of a hospital in Thailand.  Baseline characteristics of caregivers and patients, including patients’ quality of life, caregivers’ self-efficacy, and caregiver burden were collected using Zarit Burden Interview (ZBI) scores. Linear regression was used to determine the association between caregiver burden and potential risk factors.

Results One hundred and two caregivers and their patients were included in the analysis. Caregivers’ mean age was 48.2±13.1 years. Most were female (77.5%) and married (65.7%). The mean age of the 102 patients of those caregivers was 64.9±13.8 years. The majority were female (57.8%) and most lived together with their caregiver (72.6%). The mean ZBI score of the caregivers was 13.4±13.9 of whom one-fourth had experienced caregiver’s burden (23.53%), with most having mild severity (17.7%). Factors negatively associated with ZBI scores were the patient’s quality of life (coefficient -0.46, 95% CI -0.89 to -0.04, p = 0.027) and the caregiver’s self-efficacy (coefficient -0.17, 95% CI -0.31 to -0.02, p = 0.033). 

Conclusions The prevalence of caregiver burden in Thai palliative caregivers is relatively small. Greater caregiver self-efficacy and improved patient quality of life may help reduce caregiver burden. Assessment of caregiver burden level should be included as an integral aspect of the patient-care process. 

References

World Health Organization (WHO) [Internet]. Integrating palliative care and symptom relief into paediatrics: a WHO guide for health care planners, implementers and managers; 2018 [cited 2022 May 10]. Available from: https://iris.who.int/bitstream/handle/10665/274561/9789241514453-eng.pdf?ua=1

Morrison R, Dietrich J, Ladwig S, Quill T, Sacco J, Tangeman J, et al. Palliative care consultation teams cut hospital costs for Medicaid beneficiaries. Health Aff (Millwood). 2011;30:454-63.

Kavalieratos D, Corbelli J, Zhang D, Dionne-Odom JN, Ernecoff NC, Hanmer J, et al. Association between palliative care and patient and caregiver outcomes: a systematic review and meta-analysis. JAMA. 2016; 316:2104-14.

World Health Organization (WHO) [Internet]. Thailand’s leadership and innovations towards healthy ageing. 2023 [cited 2022 May 10]. Available from: https://www.who.int/southeastasia/news/feature-stories/detail/thailands-leadership-and-innovation-towards-healthy-ageing

Pinquart M, Sörensen S. Differences between caregivers and noncaregivers in psychological health and physical health: a meta-analysis. Psychology Aging. 2003;18:250-67.

Reigada C, Pais-Ribeiro J, S AN, Gonçalves E. The caregiver role in palliative care: A systematic review of the literature. Health Care Current Review. 2015;3:1-6.

Adejoh S, Boele F, Akeju D, Dandadzi A, Nabirye E, Namisango E, et al. The role, impact, and support of informal caregivers in the delivery of palliative care for patients with advanced cancer: A multi-country qualitative study. Palliat Med. 2020;35:552-62.

Sringernyuang L, Felix M, Torut B, Wongjinda S, Chaimongkol U, Wongjinda T. Thailand: Case studies of filial piety, family’s dynamics, and family finances - unexpected findings of a country-wide research of the evaluation of project performance supported by older persons fund. Asia-Pacific Social Science Review. 2020;20:145-58.

Phetsitong R, Vapattanawong P, Sunpuwan M, Völker M. State of household need for caregivers and determinants of psychological burden among caregivers of older people in Thailand: An analysis from national surveys on older persons. PLOS ONE. 2019;14:e0226330. PubMed PMID: 31826014.

Tantapakul C. A Study of baby Boomers’ attitude towards nursing homes and the factors that influence their decision making [thesis]. Bangkok: Thammasat University; 2019.

Zarit S, Reever K, Bach-Peterson J. Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist. 1980;20:649-55.

Gérain P, Zech E. Informal caregiver burnout? Development of a theoretical framework to understand the impact of caregiving. Front Psychol. 2019; 10:1748. PubMed PMID: 31428015

Revenson TA, Griva K, Luszczynska A, Morrison V, Panagopoulou E, Vilchinsky N, et al. Caregiving in the illness context. Hampshire: Palgrave Macmillan Publishing; 2016.

Truzzi A, Souza W, Bucasio E, Berger W, Figueira I, Engelhardt E, Laks J. Burnout in a sample of Alzheimer’s disease caregivers in Brazil. Eur J Psychiatry. 2008;22:151-60.

Jadalla A, Ginex P, Coleman M, Vrabel M, Bevans M. Family caregiver strain and burden: A systematic review of evidence-based interventions when caring for patients with cancer. Clin J Oncol Nurs. 2020;24: 31-50.

Haley W, Roth D, Howard G, Safford M. Caregiving strain and estimated risk for stroke and coronary heart disease among spouse caregivers: differential effects by race and sex. Stroke. 2010;41:331-6.

Perkins M, Howard V, Wadley V, Crowe M, Safford M, Haley W, et al. Caregiving strain and all-cause mortality: Evidence from the regards study. J Gerontol B Psychol Sci Soc Sci. 2012; 68:504-12.

Unsar S, Erol O, Ozdemir O. Caregiving burden, depression, and anxiety in family caregivers of patients with cancer. Eur J Oncol Nurs. 2021; 50:101882. PubMed PMID: 33421929.

Bachner Y. Psychometric Properties of Responses to an Arabic Version of the Hamilton Depression Rating Scale (HAM-D6). J Am Psychiatric Nurses Assoc. 2016; 22:27-30.

Yilmaz A, Turan E, Gundogar D. Predictors of burnout in the family caregivers of Alzheimer’s disease: evidence from Turkey. Australas J Ageing. 2009;28:16-21.

Mazanec S, Daly B, Douglas S, Lipson A. Work productivity and health of informal caregivers of persons with advanced cancer. Res Nurs Health. 2011;34:483-95.

Rha S, Park Y, Song S, Lee C, Lee J. Caregiving burden and the quality of life of family caregivers of cancer patients: the relationship and correlates. Eur J Oncol Nurs. 2015;19:376-82.

Wiglesworth A, Mosqueda L, Mulnard R, Liao S, Gibbs L, Fitzgerald W. Screening for abuse and neglect of people with dementia. J Am Geriatr Soc. 2010;58:493-500.

Cooper C, Selwood A, Blanchard M, Walker Z, Blizard R, Livingston G. The determinants of family carers’ abusive behaviour to people with dementia: Results of the card study. J Affect Disord. 2010;121:136-42.

Johannesen M, LoGiudice D. Elder abuse: A systematic review of risk factors in community-dwelling elders. Age Ageing. 2013;42:292-8.

Choi S, Seo J. Analysis of caregiver burden in palliative care: An integrated review. Nurs Forum. 2019; 54:280-90.

Chindaprasirt J, Limpawattana P, Pakkaratho P, Wirasorn K, Sookprasert A, Kongbunkiat K, Sawanyawisuth K. Burdens among caregivers of older adults with advanced cancer and risk factors. Asian Pac. J Cancer Prev. 2014;15:1643-8.

Ahmad Zubaidi Z, Ariffin F, Oun CTC, Katiman D. Caregiver burden among informal caregivers in the largest specialized palliative care unit in Malaysia: a cross sectional study. BMC Palliat Care. 2020;19:186. PubMed PMID: 33292214.

Vale J, Santana M, Lima V, Parente A, Sonobe H, Ferreira I. Burden of family caregivers of cancer patients in palliative care*. Cogitare Enfermagem. 2023;28: e89726

Ghazwani E, Al-Shehri A, Alghamdi F. Assessment of burden and stress among caregivers of terminally ill patients in a Saudi University Hospital: A cross-sectional study. Cureus. 2021;13:e14215. PubMed PMID: 33948405

Perpiñá-Galvañ J, Orts-Beneito N, Fernández-Alcántara M, García-Sanjuán S, García-Caro M, Cabañero-Martínez M. Level of burden and health-related quality of life in caregivers of palliative care patients. Int J Environ Res Public Health. 2019;16:4806. PubMed PMID: 31795461

Macchi Z, Koljack C, Miyasaki J, Katz M, Galifianakis N, Prizer L, et al. Patient and caregiver characteristics associated with caregiver burden in parkinson’s disease: A palliative care approach. Ann Palliat Med. 2020;9 (Supplementary_1):S24-S33. PubMed PMID: 31735048

Tuttle D, Griffiths J, Kaunnil A. Predictors of caregiver burden in caregivers of older people with physical disabilities in a rural community. PLoS One. 2022; 17:e0277177. PubMed PMID: 36331949

Fu W, Li J, Fang F, Zhao D, Hao W, Li S. Subjective burdens among informal caregivers of critically ill patients: A cross-sectional study in rural Shandong, China. BMC Palliat Car. 2021;20:167. PubMed PMID: 34674691

Amamou B, Fathallah S, Ammar D, Mhalla A, Zaafrane F, Gaha L. Impact of demographic, clinical and psychological variables of patients and caregivers on the perception of burden among the family caregivers of patients with cancer. Integr Cancer Sci Ther. 2019;6: 1-7.

Souza A, Guimarães R, de Araújo Vilela D, de Assis R, de Almeida Cavalcante Oliveira L, Souza M, et al. Factors associated with the burden of family caregivers of patients with mental disorders: A cross-sectional study. BMC Psychiatry. 2017;17:353. PubMed PMID: 29070012

Yuan M, Srirat C, Wangsrikhun S. Caregiver burdens and perceived self-efficacy of family caregivers of stroke survivors during the COVID-19 pandemic in Chengdu, the People’s Republic of China. Nursing Journal. 2023;50:1-13.

Campbell P, Wright J, Oyebode J, Job D, Crome P, Bentham P, et al. Determinants of burden in those who care for someone with dementia. Int J Geriatr Psychiatry. 2008;23:1078-85.

Naoki Y, Matsuda Y, Maeda I, Kamino H, Kozaki Y, Tokoro A, et al. Association between family satisfaction and caregiver burden in cancer patients receiving outreach palliative care at home. Palliat Support Care. 2017;16:260-8.

Aung T, Aung M, Moolphate S, Koyanagi Y, Supakankunti S, Yuasa M. Caregiver burden and associated

factors for the respite care needs among the family caregivers of community dwelling senior citizens in Chiang Mai, northern Thailand. Int J Environ Res Public Health. 2021;18:5873. PubMed PMID: 34070766

Poovatanaruk N, Nakawiro P. Prevalence and associated factors of caregiver burden among stroke patients. JPMAT. 2020;10:1-11.

Department of Family Medicine, Ramathibodi Hospital [Internet]. Palliative Performance Scale for adult Suandok; 2001 [cited 2022 Jun 16]. Available from: https://www.rama.mahidol.ac.th/fammed/sites/default/files/public/pdf/pps_thai.pdf

Chewaskulyong B, Sapinun L, Downing GM, Intaratat P, Lesperance M, Leautrakul S, et al. Reliability and validity of the Thai translation (Thai PPS adult suandok) of the Palliative Performance Scale (ppsv2). Palliat Med 2011;26:1034-41.

Sonsa-ardjit N. Reliability and validity of the Thai version of eq-5d-5lquestionnaire on patients with chronic disease. Chulalongkorn Medical Journal. 2015;59:489-501.

EUROQOL [Internet]. EQ-5D-5L; 2009 [cited 2022 Jun 16]. Available from: https://euroqol.org/eq-5d- instruments/eq-5d-5l-about/

Sukmak V, Sirisoonthon A, Meena P. Validity of the General Perceived Self-Efficacy Scale. J Psychiatr Assoc Thailand. 2001;41:31-7.

Toonsiri C, Sunsern R, Lawang W. Development of the burden interview for caregivers of patients with chronic illness. J Nurs Educ. 2011;4:62-75.

Pavarini S, Bregola A, Luchesi B, Oliveira N, Ottaviani A. Sociodemographic, clinical, and psychosocial factors associated with burden in older caregivers: A cross-sectional study. Dement Neuropsychol. 2023; 17:e20220030. PubMed PMID: 37223833

Tsai C, Hwang W, Lee J, Wang W, Huang L, Huang L, et al. Predictors of caregiver burden in aged caregivers of demented older patients. BMC Geriatr. 2021; 21:59. PubMed PMID: 33446114

Lasebikan V, Ayinde O. Family burden in caregivers of schizophrenia patients: Prevalence and socio-demographic correlates. Indian J Psychol Med. 2013;35:60-6.

Zygouri I, Cowdell F, Ploumis A, Gouva M, Mantzoukas S. Gendered experiences of providing informal care for older people: A systematic review and thematic synthesis. BMC Health Serv Res. 2021; 21:730. PubMed PMID: 34301248

Khanittanuphong P, Leelasamran W. Assessing Caregiver Burden and Relationship between Caregiver Burden and Basic Activities of Daily Living in Stroke Patients with Spasticity. J Med Assoc Thai. 2016;(99): 926-32.

Limpawattana P, Intarasattakul N, Chindaprasirt J, Tiamkao S. Perceived burden of Thai caregivers for older adults after stroke. Clin Gerontol. 2015;38:19-31.

Cengiz Z, Turan M, Olmaz D, Erce Ç. Care burden and quality of life in family caregivers of palliative care patients. J Soc Work End Life Palliat Care. 2021;17:50-63.

Macchi Z, Koljack C, Miyasaki J, Katz M, Galifianakis N, Prizer LP, et al. Patient and caregiver characteristics associated with caregiver burden in parkinson’s disease: A palliative care approach. Ann Palliat Med. 2020;9_(Sup_1): S24-S33. PubMed PMID: 31735048

Yildiz E, Karakaş S, Güngörmüş Z, Cengiz M. Levels of care burden and self-efficacy for informal caregiver of patients with cancer. Holist Nurs Pract. 2017;31:7-15.

O’Hara R, Hull J, Lyons K, Bakitas M, Hegel M, Li Z, et al. Impact on caregiver burden of a patient-focused palliative care intervention for patients with advanced cancer. Palliat Support Care. 2010; 8:395-404.

Hendrix C, Landerman R, Abernethy A. Effects of an individualized caregiver training intervention on self-efficacy of cancer caregivers. West J Nurs Res. 2011;35:590-610.

Meyer K, Glassner A, Norman R, James D, Sculley R, LealVasquez L, et al. Caregiver self-efficacy improves following complex care training: Results from the learning skills together pilot study. Geriatr Nurs. 2022;45:147-52.

Hall, D. Caregiver Self-efficacy?. In: Michalos A., editor. Encyclopedia of Quality of Life and Well-Being Research. Dordrecht, Netherlands: Springer; 2014. p. 572-4.

Downloads

Published

2024-10-01

How to Cite

1.
Chumintrachark A, Buawangpong N, Ratanasaard C, Pinyopornpanish K, Dejkriengkraikul N, Chutarattanakul L, Ratanasiri T. Prevalence of and Risk Factors for Caregiver Burden in Palliative Care in Thailand. BSCM [Internet]. 2024 Oct. 1 [cited 2024 Nov. 21];63(4):218-2. Available from: https://he01.tci-thaijo.org/index.php/CMMJ-MedCMJ/article/view/266399

Issue

Section

Original Article