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Impact of the caregiver burden on the effectiveness of a home-based palliative care program: A mediation analysis

Published online by Cambridge University Press:  27 September 2019

Angela J. Pereira-Morales Open the ORCID record for Angela J. Pereira-Morales [Opens in a new window] ,
Luis Enrique Valencia  and
Luis Rojas
Angela J. Pereira-Morales*
Affiliation:
SIES SALUD, Bogotá, Colombia PhD Program in Public Health, School of Medicine, Universidad Nacional de Colombia, Bogotá, Colombia
Luis Enrique Valencia
Affiliation:
SIES SALUD, Medellín, Colombia
Luis Rojas
Affiliation:
SIES SALUD, Bogotá, Colombia
*
Author for correspondence: Angela J. Pereira-Morales, Avenida Carrera 68# 46-14, Bogotá, Colombia. E-mail: angela_pereira@sies.com.co
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Abstract

Objective

The growing aging population and the high prevalence of several concomitant chronic diseases have contributed to the elevated rates of caregiver burden and suffering in patients. In turn, intending to relieve unnecessary pain in patients, there has been a rapid growth of outpatient palliative care programs. However, little has been studied about caregiver burden as a relevant factor potentially affecting the effectiveness of these programs. This study aimed to determine the extent of caregiver burden as a possible mediator on the effectiveness of a home-based palliative care program.

Method

Sixty-six palliative patients (56% women; mean age + SD = 71, 6 ± 17.7) and their caregivers were assessed with measures for physical, emotional, and psychological symptoms before and 1 month after the start of a home-based palliative care program.

Results

The association between caregiver burden and palliative outcomes was corroborated with a categorical regression model (p < 0.01). Caregiver burden was found to be a significant mediator in the relationship between outcome measures for palliative care at baseline and after 1 month of enrollment in the program.

Significance of results

To our knowledge, this is the first study to assess the role of caregiver burden in the effectiveness of a home-based palliative care program. Although further work is required, the results indicate that a patient-focused intervention does not have the same beneficial effect if the caregiver burden is not addressed. Future home-based palliative care programs should focus on caregivers as well as patients, with particular attention to psychosocial intervention on caregivers.

Keywords

BurdenFamily caregiverOutpatient palliative careTerminally ill patients
Type
Original Article
Information
Palliative & Supportive Care , Volume 18 , Issue 3 , June 2020 , pp. 332 - 338
Copyright
Copyright © Cambridge University Press 2019

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References

REFERENCES

Adelman, RD, Tmanova, LL, Delgado, D, et al. (2014) Caregiver burden: A clinical review. Journal of the American Medical Association 311(10), 1052–1060.CrossRefGoogle ScholarPubMed
Anderson, F, Downing, GM, Hill, J, et al. (1996) Palliative performance scale (PPS): A new tool. Journal of Palliative Care 12(1), 5–11.CrossRefGoogle ScholarPubMed
Arai, Y, Noguchi, C and Zarit, SH (2017) Potentially harmful behavior by caregivers may be predicted by a caregiver burden scale. International Journal of Geriatric Psychiatry 32(5), 582–583.CrossRefGoogle ScholarPubMed
Arango Lasprilla, JC, Moreno, A, Rogers, H, et al. (2009) The effect of dementia patient's physical, cognitive, and emotional/ behavioral problems on caregiver well-being: Findings from a Spanish-speaking sample from Colombia, South America. American Journal of Alzheimer's Disease & Other Dementias 24(5), 384–395.CrossRefGoogle ScholarPubMed
Bakitas, M, Lyons, KD, Hegel, MT, et al. (2009) Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer: The Project ENABLE II randomized controlled trial. Journal of the American Medical Association 302(7), 741–749.CrossRefGoogle Scholar
Barallat, E, Nabal, M, Canal, J, et al. (2017) The Spanish adaptation of the palliative performance scale (version 2) among cancer patients at the end of life: Psychometric properties. Journal of Pain and Symptom Management 54(4), 570–577.e575.CrossRefGoogle ScholarPubMed
Borda, MG, Acevedo Gonzalez, JC, David, DG, et al. (2016) [Pain in the elderly: Quality of life, functionality and associated factors. SABE Study, Bogota, Colombia]. Revista Española de Geriatría y Gerontología 51(3), 140–145.CrossRefGoogle Scholar
Camargo-Casas, S, Suarez-Monsalve, S, Zepeda, MUP, et al. (2018) [Multimorbidity, depressive symptoms, and self-reported health in older adults: A secondary analysis of the SABE Bogota Study]. Revista de Investigacion Clinica 70(4), 192–197.Google Scholar
Capistrant, BD, Moon, JR and Glymour, MM (2012) Spousal caregiving and incident hypertension. American Journal of Hypertension 25(4), 437–443.CrossRefGoogle ScholarPubMed
Clark, MM, Rummans, TA, Sloan, JA, et al. (2006) Quality of life of caregivers of patients with advanced-stage cancer. The American Journal of Hospice & Palliative Care 23(3), 185–191.CrossRefGoogle ScholarPubMed
Cohen, J (1992) A power primer. Psychology Bulletin 112(1), 155–159.CrossRefGoogle ScholarPubMed
Comino, MRS, Torres, NG, Cejudo, IP, et al. (2017) El valor del Instrumento Diagnóstico de la Complejidad en Cuidados Paliativos para identificar la complejidad en pacientes tributarios de cuidados paliativos. Medicina Paliativa 24(4), 196–203.CrossRefGoogle Scholar
Eisenchlas, JH, Harding, R, Daud, ML, et al. (2008) Use of the palliative outcome scale in Argentina: A cross-cultural adaptation and validation study. Journal of Pain & Symptom Management 35(2), 188–202.CrossRefGoogle ScholarPubMed
Flynn Longmire, CV and & Knight, BG (2011) Confirmatory factor analysis of a brief version of the Zarit Burden Interview in Black and White dementia caregivers. Gerontologist 51(4), 453–462.CrossRefGoogle ScholarPubMed
Hartmann, A, Van Der Kooij, AJ and Zeeck, A (2009) Exploring nonlinear relations: Models of clinical decision making by regression with optimal scaling. Psychotherapy Research 19(4–5), 482–492.CrossRefGoogle ScholarPubMed
Hartnett, J, Thom, B and Kline, N (2016) Caregiver burden in end-stage ovarian cancer. Clinical Journal of Oncology Nursing 20(2), 169–173.CrossRefGoogle ScholarPubMed
Hayes, AF (2017) Introduction to mediation, moderation, and conditional process analysis: A regression-based approach. New york: The Guildford Press. ISBN: 9781462534654.Google Scholar
Hearn, J and Higginson, IJ (1999) Development and validation of a core outcome measure for palliative care: The palliative care outcome scale. Palliative Care Core Audit Project Advisory Group. Quality in Health Care 8(4), 219–227.CrossRefGoogle ScholarPubMed
Hebert, RS, Arnold, RM and Schulz, R (2007) Improving well-being in caregivers of terminally ill patients. Making the case for patient suffering as a focus for intervention research. Journal of Pain and Symptom Management 34(5), 539–546.CrossRefGoogle ScholarPubMed
He Leow, MQ and Wai Chi Chan, S (2011) Factors affecting caregiver burden of terminally ill adults in the home setting – A systematic review. JBI Library of Systematic Reviews 9(45), 1883–1916.CrossRefGoogle ScholarPubMed
Hudson, PL, Thomas, K, Trauer, T, et al. (2011) Psychological and social profile of family caregivers on commencement of palliative care. Journal of Pain and Symptom Management 41(3), 522–534.CrossRefGoogle ScholarPubMed
Kim, HY (2013) Statistical notes for clinical researchers: assessing normal distribution (2) using skewness and kurtosis. Restorative Dentistry & Endodontics 38(1), 52–54.CrossRefGoogle ScholarPubMed
Kurtz, ME, Kurtz, JC, Given, CW, et al. (2005) A randomized, controlled trial of a patient/caregiver symptom control intervention: Effects on depressive symptomatology of caregivers of cancer patients. Journal of Pain and Symptom Management 30(2), 112–122.CrossRefGoogle ScholarPubMed
Lakens, D (2013) Calculating and reporting effect sizes to facilitate cumulative science: A practical primer for t-tests and ANOVAs. Frontiers in Psychology 4, 863.CrossRefGoogle ScholarPubMed
Leon, M, Florez, S, De Lima, L, et al. (2011) Integrating palliative care in public health: The Colombian experience following an international pain policy fellowship. Palliative Medicine 25(4), 365–369.CrossRefGoogle ScholarPubMed
Lustbader, D, Mudra, M, Romano, C, et al. (2017) The impact of a home-based palliative care program in an accountable care organization. Journal of Palliative Medicine 20(1), 23–28.CrossRefGoogle Scholar
Martın, M, Salvadó, I, Nadal, S, et al. (1996) Adaptación para nuestro medio de la Escala de Sobrecarga del Cuidador (Caregiver Burden Interview) de Zarit. Review of Gerontology 6, 338–346.Google Scholar
Moreno, JA, Nicholls, E, Ojeda, N, et al. (2015) Caregiving in dementia and its impact on psychological functioning and health-related quality of life: Findings from a Colombian sample. Journal of Cross-Cultural Gerontology 30(4), 393–408.CrossRefGoogle ScholarPubMed
Morgan-Lopez, AA and MacKinnon, DP (2006) Demonstration and evaluation of a method for assessing mediated moderation. Behavior Research Methods 38(1), 77–87.CrossRefGoogle ScholarPubMed
O'Hara, RE, Hull, JG, Lyons, KD, et al. (2010) Impact on caregiver burden of a patient-focused palliative care intervention for patients with advanced cancer. Palliative & Supportive Care 8(4), 395–404.CrossRefGoogle ScholarPubMed
Palacio, C, Krikorian, A and Limonero, JT (2018) The influence of psychological factors on the burden of caregivers of patients with advanced cancer: Resiliency and caregiver burden. Palliative & Supportive Care 16(3), 269–277.CrossRefGoogle ScholarPubMed
Peters, L and Sellick, K (2006) Quality of life of cancer patients receiving inpatient and home-based palliative care. Journal of Advanced Nursing 53(5), 524–533.CrossRefGoogle ScholarPubMed
Prada, SI and Perez Castano, AM (2017) [Chronic diseases and insured spending in Colombia]. Salud Pública de México 59(3), 210–211.CrossRefGoogle Scholar
Preacher, KJ and Kelley, K (2011) Effect size measures for mediation models: Quantitative strategies for communicating indirect effects. Psychological Methods 16(2), 93–115.CrossRefGoogle ScholarPubMed
Sasaki, M, Arai, Y, Kumamoto, K, et al. (2007) Factors related to potentially harmful behaviors towards disabled older people by family caregivers in Japan. International Journal of Geriatric Psychiatry 22(3), 250–257.CrossRefGoogle ScholarPubMed
Serra-Prat, M, Nabal, M, Santacruz, V, et al. (2004) [Validation of the Spanish version of the Palliative Care Outcome Scale]. Medicina Clinica, 123(11), 406–412.CrossRefGoogle Scholar
Stevens, LF, Arango-Lasprilla, JC, Deng, X, et al. (2012) Factors associated with depression and burden in Spanish speaking caregivers of individuals with traumatic brain injury. NeuroRehabilitation 31(4), 443–452.CrossRefGoogle ScholarPubMed
Toda, D, Tsukasaki, K, Itatani, T, et al. (2018) Predictors of potentially harmful behaviour by family caregivers towards patients treated for behavioural and psychological symptoms of dementia in Japan. Psychogeriatrics 18(5), 357–364.CrossRefGoogle ScholarPubMed
Totten, AM, White-Chu, EF, Wasson, N, et al. (2016) Home-based primary care interventions. In Home-Based Primary Care Interventions, AHRQ Publication No. 15(16)-EHC036-EF. Rockville, MD: Agency for Healthcare Research and Quality, pp. 1–7. February 2016.Google ScholarPubMed
Van Houtven, CH, Ramsey, SD, Hornbrook, MC, et al. (2010) Economic burden for informal caregivers of lung and colorectal cancer patients. Oncologist 15(8), 883–893.CrossRefGoogle ScholarPubMed
Wang, SE, Liu, IA, Lee, JS, et al. (2019) End-of-life care in patients exposed to home-based palliative care vs hospice only. Journal of the American Geriatrics Society 67, 1226–1233.CrossRefGoogle ScholarPubMed
Yoon, SJ, Kim, JS, Jung, JG, et al. (2014) Modifiable factors associated with caregiver burden among family caregivers of terminally ill Korean cancer patients. Support Care Cancer 22(5), 1243–1250.CrossRefGoogle ScholarPubMed