This article was contributed Reshma Parvin Nuri, a master’s student in the Rehabilitation Science program. Reshma is a physiotherapist by training and throughout her career has worked with persons with disabilities in Bangladesh. Through her work, Reshma hopes to improve quality of life for persons with disabilities.
Around 150 million children worldwide have some kind of disability, with most of them living in developing countries (Maulik & Darmstadt, 2007). Usually, the responsibility of care for a child with disability falls entirely on the family. A family can play a vital role in the rehabilitation process of a child with disability. For example, families can provide important information about the child’s disability and behavior to health service providers, which may help in setting up a holistic treatment plan (Siebes et al., 2007). Additionally, with proper training and support, family members can continue long-term therapeutic treatment at home (Siebes et al., 2007). Family members can even provide training to other families of children with disabilities, who are unable to access institutional-based services (Helander, 1993).
For a child with a disability, family plays a significant role both in their life and rehabilitation process; however, there has been limited research focused on family needs in low income countries (Nuri & Aldersey, 2016). This notable gap in the literature compelled me to explore the needs of families with a disabled child in my native country of Bangladesh, with support from a Queen Elizabeth II Scholarship in International Community Based Rehabilitation. The purpose of my Master’s thesis is to understand the needs of families of children with cerebral palsy (CP) in Bangladesh. I am using the definition of family need described by Chiu, Turnbull, & Summers (2013) for my work. These authors define family need as the absence of support for a task that is important to the family.
Throughout the summer, I am conducting fieldwork and interviewing family members including fathers, mothers, grandmothers, and siblings who are receiving rehabilitation services from the Centre for the Rehabilitation of the Paralysed (CRP) in Bangladesh. I have already interviewed 11 family members and am getting an early impression that financial resources is one of the greatest needs that families in my study will identify. Most of the families are telling me that they need financial support for the rehabilitation services for their child with CP, as these services are expensive and can continue throughout the lifespan.
The primary family needs of my participants is in contrast to a review of global literature, which revealed that informational need is the greatest unmet need of families of children with disabilities in high and middle-income countries (Nuri & Aldersey, 2016). Besides my own research, I am also contributing to the local CRP community by doing volunteer work with the Access to Health and Education for All Children and Youth with Disabilities (AHEAD) project in Bangladesh.
I will return home to Canada in September and I hope that at the end of this study, I will have a comprehensive understanding about family needs, and a direction for future research in order to best meet the identified needs of families of children with CP in Bangladesh. In the future, I would like to continue researching issues important to families impacted by disability in Bangladesh by pursuing a doctoral degree in Rehabilitation Science.
Chiu, C., Turnbull, A. P., & Summers, J. A. (2013). What families Need: Validation of the Family Needs Assessment for Taiwanese Families of Children With Intellectual Disability and Developmental Delay. Research & Practive for Persons with Severe Disabilities, 38(4), 247–258. http://doi.org/10.1177/154079691303800404
Helander, E. (1993). Prejudice and dignity: an introduction to community-based rehabilitation. In Prejudice and dignity. An introduction to community- based rehabilitation. New York: United Nations Development Programme, Division for Global and Interregional Programmes.
Maulik, P. K., & Darmstadt, G. L. (2007). Childhood disability in low-and middle-income countries: overview of screening, prevention, services, legislation, and epidemiology. Pediatrics, 120((Supplement 1)), 1–55.
Nuri, R. P., & Aldersey, H. M. (2016). Needs of Families Impacted by Disability: A Scoping Review. Disability and International Development, (1), 20–28.
Siebes, R. C., Wijnroks, L., Ketelaar, M., Schie, P. E. M., Gorter, J. W., & Vermeer, A. (2007). Parent participation in paediatric rehabilitation treatment centres in the Netherlands: a parents’ viewpoint. Child Care, Health and Development, 33(2), 196–205.