Caring for Carers: Association between Care-giving and Quality of Life of Family Carers of Spinal Cord Injury Survivors in Pakistan
DOI:
https://doi.org/10.52053/jpap.v5i3.320Keywords:
Caregivers, Caregiver Burden, Functional Dependence, Psychosocial Factors, Quality of LifeAbstract
Caring for someone with a spinal cord injury (SCI) has always been a family endeavor in developed as well as developing countries like Pakistan. Majority of people with SCI need assistance of others to carry out daily life activities i.e., eating, self-care, transportation and this functional dependence of patients on their attendant affect Quality of Life (QOL) of caregivers. Present study was designed to find the relationship between caregiver burden, psychosocial factors and QOL among caregivers. Caregiver Burden Inventory-SCI and WHOQOL was used to measure study variables. Cross-sectional research design having purposive sampling technique was used to gather data from spinal units of various hospitals of Pakistan. Sample size includes N= 255 family caregivers of SCI patients. Correlation analyses were applied to find the relationship between psychosocial factors, caregiver burden and QOL. Results showed that caregiver burden was significantly negatively correlated with quality of life and positively correlated with care-giving hours, duration of injury, and number of helpers involved in care-giving process. Furthermore, female caregivers showed high level caregiver burden and low levels of quality of life as compared to male counterparts. Similarly, married persons scored higher on caregiver burden and whose patients had paraplegic nature of injury. In Pakistan, there are no respite care programs for carers, The abovementioned findings are helpful in planning psychotherapeutic interventions and tailored caregiver training programs to lessen the impact of caregiver burden on caregivers and to boost their quality of life.
References
Backx, A. P. M., Spooren, A. I. F., Bongers-Janssen, H. M. H., & Bouwsema, H. (2018). Quality of life, burden and satisfaction with care in caregivers of patients with a spinal cord injury during and after rehabilitation. Journal of Spinal Cord, 56(9), 890–899. https://doi.org/10.1038/s41393-018-0098-7
Bhan, N., Rao, N., & Raj, A. (2020). Gender Differences in the Associations between Informal Caregiving and Wellbeing in Low- and Middle-Income Countries. Journal of Women's Health, 29(10), 1328–1338. https://doi.org/10.1089/jwh.2019.7769
Bilal, H. (2016). The Incidence of traumatic spinal cord injury in Khyber Pakhtunkhwa, Pakistan from 2008 to 2012. Journal of Riphah College of Rehabilitation Sciences, 3, 30-34.
Blanes, L., Carmagnani, M. I. S., & Ferreira, L. M. (2007). Health-related quality of life of primary caregivers of persons with paraplegia. Journal of Spinal Cord, 45(6), 399–403. https://doi.org/10.1038/sj.sc.3102038
Charlifue, S. B., Botticello, A., Kolakowsky-Hayner, S. A., Richards, J. S., & Tulsky, D. S. (2016). Family caregivers of individuals with spinal cord injury: exploring the stresses and benefits. Journal of Spinal Cord, 54(9), 732–736. https://doi.org/10.1038/sc.2016.25.
Coleman, J. A., Harper, L. A., Perrin, P. B., Olivera, S., Perdomo, J. L., Arango, J. A., & Arango-Lasprilla, J. C. (2013). Examining the relationship between health-related quality of life in individuals with spinal cord injury and the mental health of their caregivers in Colombia, South America. International Journal of Rehabilitation Research, 36(4), 308–314. doi.org/10.1097/MRR.0b013e3283634e7f
Conti, A., Clari, M., Garrino, L., Maitan, P., Scivoletto, G., Cavallaro, L., Bandini, B., Mozzone, S., Vellone, E., & Frigerio, S. (2019). Adaptation and validation of the Caregiver Burden Inventory in Spinal Cord Injuries (CBI-SCI). Journal of Spinal Cord, 57(1), 75–82. https://doi.org/10.1038/s41393-018-0179-7
Dalky, H. F., Qandil, A. M., Natour, A. S., & Janet, M. C. (2017). Quality of Life, Stigma and Burden Perception Among Family Caregivers and Patients with Psychiatric Illnesses in Jordan. Community Mental Health Journal, 53(3), 266–274. https://doi.org/10.1007/s10597-016-0028-0
Darain, H., & Arsh, A. (2019). Spinal cord injury and its associated challenges to rehabilitation of patients in Pakistan. Rehman Journal of Health Sciences, 1(1), 1-20.
Department of Physical Medicine and Rehabilitation (2023). National Spinal Cord Injury Statistical Centre. https://www.uab.edu/medicine/physicalmedicine/research/national-spinal-cord-injury-statistical-center
Dickson, A., Brien, O., G. Ward, R., Flowers, P., Allan, D., & O'Carroll, R. (2012). Adjustment and coping in spousal caregivers following a traumatic spinal cord injury: an interpretative phenomenological analysis. Journal of Health Psychology, 17(2), 247–257. https://doi.org/10.1177/1359105311411115
Dreer, L. E., Elliott, T. R., Shewchuk, R., Berry, J. W., & Rivera, P. (2007). Family caregivers of persons with spinal cord injury: Predicting caregivers at risk for probable depression. Journal of Rehabilitation Psychology, 52(3), 351–357. https://doi.org/10.1037/0090-5550.52.3.351
Duggleby, W., Williams, A., Ghosh, S., Moquin, H., Ploeg, J., Markle-Reid, M., & Peacock, S. (2016). Factors influencing changes in health related quality of life of caregivers of persons with multiple chronic conditions. Health and Quality of Life Outcomes, 14, 81. https://doi.org/10.1186/s12955-016-0486-7.
Ebrahimzadeh, M. H., Shojaei, B. S., Keshtan, F., Moghaddas, S. H., Fattahi, A. S., & Mazloumi, S. M. (2013). Quality of life and the related factors in spouses of veterans with chronic spinal cord injury. Health and Quality of Life Outcomes, 11, 48 https://doi.org/10.1186/1477-7525-11-48
Elliott, T. R., Berry, J. W., Richards, J. S., & Shewchuk, R. M. (2014). Resilience in the initial year of caregiving for a family member with a traumatic spinal cord injury. Journal of Consulting and Clinical Psychology, 82(6), 1072–1086. https://doi.org/10.1037/a0037593
El-Nady, M. T. (2012). Relationship between caregivers' burnout and elderly emotional abuse. Scientific Research and Essays, 7(41), 3535-3541.
Farajzadeh, A., Akbarfahimi, M., Maroufizadeh, S., &Lavasani, N. (2021). Factors Associated with Quality of Life among Caregivers of People with Spinal Cord Injury. Occupational Therapy International (pre-print), 9921710. https://doi.org/10.1155/2021/9921710
Gajraj-Singh P. (2011). Psychological impact and the burden of caregiving for persons with spinal cord injury living in the community in Fiji. Journal of Spinal Cord, 49(8), 928–934. https://doi.org/10.1038/sc.2011.15
George, D., & Mallery, P. (2019). IBM SPSS statistics 26 step by step: A simple guide and reference. Routledge.
Groeneveld, R. A., & Meeden, G. (1984). Measuring skewness and kurtosis. Journal of the Royal Statistical Society Series D: The Statistician, 33(4), 391-399.
Khalid, T., & Kausar, R. (2008). Depression and quality of life among caregivers of people affected by stroke. Asia Pacific Disability Rehabilitation Journal, 19(2), 103-110.
Lenehan, B., Street, J., Kwon, B. K., Noonan, V., Zhang, H., Fisher, C. G., & Dvorak, M. F. (2012). The epidemiology of traumatic spinal cord injury in British Columbia, Canada. Journal of Spine, 37(4), 321–329. https://doi.org/10.1097/BRS.0b013e31822e5ff8
Lynch, J., & Cahalan, R. (2017). The impact of spinal cord injury on the quality of life of primary family caregivers: a literature review. Journal of Spinal Cord, 55(11), 964–978. https://doi.org/10.1038/sc.2017.56
Middleton, J. W., Simpson, G. K., Wolf, A. D., Quirk, R., Descallar, J., & Cameron, I. D. (2014). Psychological distress, quality of life, and burden in caregivers during community reintegration after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 95(7), 1312–1319. https://doi.org/10.1016/j.apmr.2014.03.017
National Family Caregivers Association and Family Caregiver Alliance (2004). Prevalence, hours and economic value of family care-giving, updated state-by-state analysis. https://www.caregiver.org/resource/do-you-need caregiving resources/? gclid=EAIaIQobChMIpoWD45SxgAMV2QkGAB2E0AJ1EAAYAiAAEgJLdvD_BwE.
Nogueira, P. C., Rabeh, S. A. N., Caliri, M. H. L., & Dantas, R. A. S. (2016). Health-Related Quality of Life among Caregivers of Individuals with Spinal Cord Injury. The Journal of Neuroscience Nursing, 48(1), 28–34. https://doi.org/10.1097/JNN.0000000000000177.
Novak, M., & Guest, C. (1989). Application of a multidimensional caregiver burden inventory. The Journal of Gerontologist, 29(6), 798–803. https://doi.org/10.1093/geront/29.6.798
Pearlin, L. I., Menaghan, E. G., Lieberman, M. A., & Mullan, J. T. (1981). The stress process. Journal of Health and Social Behavior, 22(4), 337–356 https://doi.org/10.2307/2136676
Pinquart, M., & Sorensen, S. (2003). Associations of stressors and uplifts of care-giving with caregiver burden and depressive mood: a meta-analysis. The Journals of Gerontology. Series B, Psychological Sciences and Social Sciences, 58(2), 112–128. https://doi.org/10.1093/geronb/58.2.112
Post, M. W. M., & van Leeuwen, M. C. (2012). Psychosocial issues in spinal cord injury: a review. Journal of Spinal Cord, 50(5), 382–389. https://doi.org/10.1038/sc.2011.182
Qureshi, A. A., Irfan, A., & Memon, M. A. (2001). Spinal Injuries: A Prospective Study. Biomedica, 17, 27-29.
Raja, I. A., Vohra, A. H., & Ahmed, M. (2001). Neurotrauma in Pakistan. World Journal of Surgery, 25, 1230-1237.
Raj, E. A., Shiri, S., & Jangam, K. V. (2016). Subjective burden, psychological distress, and perceived social support among caregivers of persons with schizophrenia. Indian Journal of Social Psychiatry, 32(1), 42-49. https://doi.org/10.4103/0971-9962.176767
Rathore, M. F., Hanif, S., Farooq, F., Ahmad, N., Mansoor, S. N. (2008). Traumatic spinal cord injuries at a tertiary care rehabilitation institute in Pakistan. Journal of Pakistan Medical Association, 58(2), 53-57.
Samsa, G. P., Hoenig, H., & Branch, L. G. (2001). Relationship between self-reported disability and caregiver hours. American Journal of Physical Medicine & Rehabilitation, 80(9), 674–684. https://doi.org/10.1097/00002060-200109000-00007
Shah, S. Z. A., Rifullah, H., & Ilyas, S. M. (2017) Assessment of the quality of life of spinal cord injury patients in Peshawar. Journal of Pakistan Medical Association, 67, 434-437.
Tarlow, B. J., Wisniewski, S. R., Belle, S. H., Ruber, M., Ory, M. G., & Gallagher-Thompson, D. (2004). Positive aspects of care-giving: Contributions of the REACH project to the development of new measures for Alzheimer’s care-giving. Research on Aging, 26(4), 429-453. https://doi.org/10.1177/0164027504264493
The World Health Organization Quality of Life Assessment (WHOQOL): development and general psychometric properties. (1998). Journal of Social Science & Medicine, 46(12), 1569–1585. https://doi.org/10.1016/s0277-9536(98)00009-4
Xu, L., Liu, Y., He, H., Fields, N. L., Ivey, D. L., & Kan, C. (2021). Caregiving intensity and caregiver burden among caregivers of people with dementia: The moderating roles of social support. Archives of Gerontology and Geriatrics, 94, 104334.
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