Understanding the Lives of Caregivers of Children with Cerebral Palsy in rural Bangladesh: Use of Mixed Methods

Maria A Zuurmond , Ilias Mahmud , Sarah Polack , Jenny Evans
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DOI: https://doi.org/10.5463/dcid.v26i2.414
Submitted: 2020-09-14 08:39:17
Published: 2015-07-22

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. 

Keywords

caregivers quality of life Bangladesh children with disabilities

Authors

Maria A Zuurmond

Maria Zuurmond has more than 25 years of experience of working in international development. Her main areas of research interest include: children and young people’s health and well-being, disability, HIV and AIDS, and sexual & reproductive health. Her current work focuses on children with disabilities, and she is particularly interested in the use of participatory approaches.

Ilias Mahmud

Ilias Mahmud (PhD) is an assistant professor at the James P Grant School of Public Health. He is also a faculty member of the Master of Physiotherapy and Master of Rehabilitation Science programmes at Center for the Rehabilitation of the Paralysed, Bangladesh. He is the social and scientific secretary of the Public Health Association of Bangladesh. He was the President of the Bangladesh Occupational Therapy Association (2004-2006, 2007-2008) and the Delegate of the same association to the World Federation of Occupational Therapists (2009-2014).

Sarah Polack

Sarah Polack has worked at LSHTM  for the past 10 years. Sarah is a member of the International Centre for Evidence in Disability at LSHTM and her recent research has focused on methodological issues in the assessment of disability within surveys as well as exploring access to services and quality of life of people with disabilities in low and middle income settings.

Jenny Evans

Jennifer Evans is an epidemiologist with interest in the epidemiology of eye disease and disability in UK and lower income countries. She works with Cochrane Eyes and Vision producing systematic reviews of interventions for eye health and visual impairment

How to Cite

Maria A Zuurmond, Ilias Mahmud, Sarah Polack, Jenny Evans (2015-07-22). Understanding the Lives of Caregivers of Children with Cerebral Palsy in rural Bangladesh: Use of Mixed Methods. Disability, CBR & Inclusive Development, Vol. 26 No. 2 (2015): Summer 2015, 5-21. https://doi.org/10.5463/dcid.v26i2.414

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