Understanding the Lives of Caregivers of Children with Cerebral Palsy in rural Bangladesh: Use of Mixed Methods
Cerebral palsy is the most prevalent health condition linked to childhood disability in Bangladesh, yet support and rehabilitation for this group is limited. Understanding the impact of cerebral palsy at family level is important for the development of appropriate interventions.
Purpose: This study aims to explore the impact on the lives of caregivers of children with cerebral palsy.
Methods: The study used mixed methods. The PedsQL™ Family Impact Questionnaire Module was administered to the main caregivers in 135 families with a child with cerebral palsy and 150 families that did not have a child with a disability, from the same villages. In-depth interviews and observations were undertaken with 10 families, and 2 focus group discussions were conducted with representatives from 14 parent/caregiver groups. The project was conducted from April 2011-April 2013. Data collection was from September 2011-Dec 2012.
Results: The mean overall and sub-scale PedsQL™ scores were significantly poorer (p<0.001) for caregivers of a child with cerebral palsy compared to scores from families that did not have a child with disability. Caregivers reported high levels of stress, anxiety, isolation, stigma, physical tiredness, and lack of time to complete everyday tasks. Knowledge and understanding about cerebral palsy was generally low.
Conclusion: This study demonstrates the particular vulnerability of families of children with disabilities in resource-limited settings. It reveals the extent of the impact on the caregivers. Interventions therefore need to be holistic, addressing the well-being and empowerment of caregivers as well as children.
Balasundaram P (1995). Fostering pparental involvement. In: O'Toole, B. &McConkey, R. (eds.) Innovations in developing countries for people with disabilities. Lisieux Hall Publications. Available at http://www.eenet.org.uk/resources/docs/inno_dev_coun.php
Bedford J, Mackey S, Parvin A, Muhit M, Murthy G (2013). Reasons for non-uptake of referral: children with disabilities identified through the key informant method in Bangladesh. Disability & Rehabilitation; 35(25): 2164-70. http://dx.doi.org/10.3109/09638288.2013.770927 PMid:23480675
Beresford B A (1994). Resources and strategies: how parents cope with the care of a disabled child. Journal of Child Psychology and Psychiatry; 35(1): 171-209. http://dx.doi.org/10.1111/j.1469-7610.1994.tb01136.x PMid:8163627
Creswell J (2009). Mixed methods procedures. Research design: qualitative, quantitative, and mixed methods approaches. London: Sage
Donald KA, Kakooza AM, Wammanda RD, Mallewa M, Samia P, Babakir H, Bearden D, Majnemer A, Fehlings D, Shevell M (2015). Paediatric cerebral palsy in Africa: where are we? Journal of Child Neurology 30 (8): 963-971. http://dx.doi.org/10.1177/0883073814549245 PMid:25296926
Donald KA, Samia P, Kakooza-Mwesige A, Bearden D (2014). Paediatric cerebral palsy in Africa: a systematic review. Seminars in Paediatric Neurology; 21(1): 30-35. http://dx.doi.org/10.1016/j.spen.2014.01.001 PMid:24655402
Gona J, Hartley S, Newton C, Newton J (2006). Using participatory rural appraisal (PRA) in the identification of children with disabilities in rural Kilifi, Kenya. Rural and Remote Health; 6: 553 (online). PMid:16956314
Green J, Thorogood N (2009). Qualitative methods for health research. London: Sage.
Hartley S, Ojwang V P, Bagawemu A, Ddamulira M, Chavuta A (2005). How do carers of disabled children cope? The Uganda perspective. Child: Care, Health and Development; 31(2): 167-180. http://dx.doi.org/10.1111/j.1365-2214.2004.00464.x PMid:15715696
Khan N Z, Ferdous S, Munir S, Huq S, McConachie H (1998). Mortality of urban and rural young children with cerebral palsy in Bangladesh. Developmental Medicine & Child Neurology, 40(11): 749-753. http://dx.doi.org/10.1111/j.1469-8749.1998.tb12343.x PMid:9881804
Mactaggart I, Murthy G (2013). The key informant child disability project in Bangladesh and Pakistan. Main Report. International Centre for Evidence in Disability, London School of Hygiene and Tropical Medicine. Available at http://disabilitycentre.lshtm.ac.uk/key-publications/.
Maloni PK, Despres ER, Habbous J, Primmer AR, Slatten JB, Gibson BE , Landry MD (2010). Perceptions of disability among mothers of children with disability in Bangladesh: implications for rehabilitation service delivery. Disability & Rehabilitation; 32(10): 845-854. http://dx.doi.org/10.3109/09638280903326063 PMid:20131951
McConachie H, Huq S, Munir S, Ferdous S, Zaman S, Khan NZ (2000). A randomised controlled trial of alternative modes of service provision to young children with cerebral palsy in Bangladesh. The Journal of Paediatrics; 137(6): 769-776. http://dx.doi.org/10.1067/mpd.2000.110135 PMid:11113832
McConachie H, Huq S, Munir S, Kamrunnahar, Akhter N, Ferdous S, Khan NZ (2001). Difficulties for mothers in using an early intervention service for children with cerebral palsy in Bangladesh. Child: Care, Health and Development; 27(1): 1-12. http://dx.doi.org/10.1046/j.1365-2214.2001.00207.x PMid:11136337
McConkey R, Mariga L, Braadland N, Mphole P (2000). Parents as trainers about disability in low-income countries. International Journal of Disability, Development and Education; 47(3): 309-317. http://dx.doi.org/10.1080/713671113
Mobarak R, Khan NZ, Munir S, Zaman SS, McConachie H (2000). Predictors of stress in mothers of children with cerebral palsy in Bangladesh. Journal of Paediatric Psychology; 25(6): 427. http://dx.doi.org/10.1093/jpepsy/25.6.427 PMid:10980047
Morris J (1998). Don't leave us out: involving disabled children and young people with communication impairments. York: York publishing services.
Murthy GV, Mactaggart I, Mohammad M, Islam J, Noe C, Khan AI, Foster A, Smith A, Qureshi B, Gilbert C (2014). Assessing the prevalence of sensory and motor impairments in childhood in Bangladesh using key informants. Archives of Disease in Childhood; 99: 1103-1108. http://dx.doi.org/10.1136/archdischild-2014-305937 PMid:25005523 PMCid:PMC4251542
Nesbitt R, Mackey S, Kuper H, Muhit M, Murthy G (2011). Predictors of referral uptake in children with disabilities in Bangladesh - exploring barriers as a first step to improving referral provision. Disability and Rehabilitation; 34(13): 1089-1095. http://dx.doi.org/10.3109/09638288.2011.634943 PMid:22136387
Raina P, O'Donnell M, Rosenbaum P, Brehaut J, Walter S D, Russell D, Swinton M, Zhu B, Wood E (2005). The health and well-being of caregivers of children with cerebral palsy. Paediatrics; 115(6): e626-e636. http://dx.doi.org/10.1542/peds.2004-1689 PMid:15930188
United Nations (1989).The UN Convention on the Rights of the Child [Online]. Available: http://www.unicef.org.uk/UNICEFs-Work/Our-mission/UN-Convention/ [Accessed on 4 September 2013].
United Nations (2006).UN Charter on the Rights of Persons with Disabilities [Online]. Available: http://www.un.org/disabilities/default.asp?id=150 [Accessed on 4 Sept 2013].
United Nations Children's Fund - UNICEF (2005). The state of the world's children 2006: excluded and invisible. Available at http://www.unicef.org/sowc06/pdfs/sowc06_fullreport.pdf [Online]. New York: UNICEF. [Accessed on 5 September 2013].
United Nations Children's Fund - UNICEF (2013). State of the world's children: children with disabilities. Available at http://www.unicef.org/sowc2013/. New York: UNICEF.[Accessed on 5 September 2013]
Varni JW, Sherman SA, Burwinkle TM, Dickinson PE, Dixon P (2004). The PedsQL™ family impact module: preliminary reliability and validity. Health and Quality of Life Outcomes; 2(1): 55. http://dx.doi.org/10.1186/1477-7525-2-55 PMid:15450120 PMCid:PMC521692
World Health Organisation (2010).Community-based rehabilitation: CBR guidelines [Online]. Geneva: WHO. Available from: http://www.who.int/disabilities/cbr/guidelines/en/ [Accessed on 1 August 2013].
World Health Organisation & World Bank (2011). World report on disability [Online]. Geneva: WHO. Available from: http://www.who.int/disabilities/world_report/2011/en/index.html [Accessed on 19 December 2013].
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