Family perceptions of intellectual disability: Understanding and support in Dar es Salaam.

Heather M Aldersey

doi:10.4102/ajod.v1i1.32

Abstract

When attempting to understand the construct of intellectual disability in different contexts, speaking to family members in addition to the individual with the disability may provide new insight about understandings of and responses to intellectual disability in society and may help to identify the forms of support that are available or needed to ensure the quality of life of people with disabilities. This article outlines and discusses interviews that were conducted in Dar es Salaam, Tanzania, with family members of children and adults with intellectual disabilities. These interviews explore how families came to understand that their child had an intellectual disability; the availability of family support; and family hopes and dreams for the future, and were a part of a wider exploratory study that gathered insight from individuals with disabilities, families, and other providers of support to explore understandings and perceptions of disability in Dar es Salaam. Understanding family experiences will help researchers, policy makers, non-governmental organisations, and others to identify family strengths and family support needs which can ultimately improve family quality of life and the quality of life of the member with a disability.

Highlights

In most nations worldwide, the family is the first and most enduring unit of society and is usually the primary source of influence behind the formation of personality and the growth of an individual (Macionis 2011)
My research questions were (a) how do families conceptualise and experience disability?; (b) what are families greatest support needs?; and (c) what are the unique strengths of each family? I aimed to expand upon Mbwilo et al.’s (2010) important exploration of family and intellectual disability in Dar es Salaam by further probing family understanding of intellectual disability and identifying areas of family support needs while providing a discussion of family strengths
Internationally-relevant examples of family strengths include commitment, appreciation and affection, positive communication, time together, spiritual wellbeing, and the ability to cope with stress and crisis (DeFrain 1999)

Summary

Introduction

The family is the first and most enduring unit of society and is usually the primary source of influence behind the formation of personality and the growth of an individual (Macionis 2011). For the lives of people with intellectual disabilities, family members often continue to provide invaluable support throughout their lifespan (Chou, Lin, Chang, & Schalock 2007; Hill & Rose 2009; McConkey 2005). When attempting to understand the construct of intellectual disability in various different contexts, speaking to family members, in addition to the individual with a disability, may provide different insight about understandings of and responses to intellectual disability in society. It may help to identify the supports that are available or needed to ensure the quality of life of the family member with a disability. I aimed to expand upon Mbwilo et al.’s (2010) important exploration of family and intellectual disability in Dar es Salaam by further probing family understanding of intellectual disability and identifying areas of family support needs while providing a discussion of family strengths. After identification of family strengths, one can attempt to build upon those strengths to improve overall family quality of life

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Conclusion