Caregivers are the important and integral part in the lives of people with intellectual disability. As caregiving is extensive and mostly lifelong for this population, the associated burden, stigma, and also wellbeing of the caregivers are also equally important as these are often very directly correlated with the wellbeing of the individuals with intellectual disability. The chapter focused on the issues and impacts of caregiving, mental health problems, wellbeing, and related issues of caregivers. The authors also discuss the various facets of stigma caregivers do face and ways to deal with the stigma.
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Care giving to individuals with disability is laborious and associated with many mental health issues and related problems. In a longitudinal study on the well-being of parents of individuals included in the Australian Rett Syndrome Database over the period from 2002 to 2011, Mori, Downs, Wong, & Leonard (2019) reported that poorer parental physical well-being was related with residential remoteness, the child being a teenager at baseline, having frequent sleep disturbances or behavioural problems, and being a single parent or on a low income was associated with later poorer physical well-being, while the child having enteral feeding was associated with later poorer emotional well-being. Laurvick, Msall, Silburn, Bower, de Klerk, & Leonard (2006) reported in a study on mothers (n = 135, age ranged from 21 to 60 years) of children with Rett syndrome (age between 3 and 27 years) that the most important predictors of maternal physical and emotional health are child behavior, caregiver demands, and family function. The scenario is not much different with caregivers of individual with intellectual disability.
Many researches focused on the management of individuals with intellectual disability, the mental health issues, stress and burden of the care givers of intellectually disabled individuals are equally important as indicated by the recent researches. In some cases, family members neglect the disabled individuals. Enoch, Mprah, Isaac & Joseph (2018) have reported in a study from Ghana that most parents refuse to visit their children with intellectual disability in school. However, due to deinstitutionalization and perspective of inclusion in to society, most of the intellectually disabled children, adults and older adults are taken care at home and at least one of the family members to be the primary care taker. Such scenario gives importance for the needs and difficulties for the caregiver. The chapter focused on the issues and impacts of care giving, mental health problems, wellbeing and related issues of caregiver.