Understanding resilience in families of children with intellectual disabilities in Sweden: the role of micro, meso and macro level support

Abstract

The study investigates resilience in families of children with intellectual disabilities with critical consideration to the role of micro, meso and macro level support in the resilience process. Three overarching questions underpinned this study namely; a) How do families with ID children in Sweden perceive formal support in their resilience process? b) What is the role of informal social support in the resilience process of families with ID children c) How does dynamics within families of children with ID affect family resilience? Qualitative research design was utilized in the collection and analysis of data. Seven parents from six families were purposively selected through the snowballing sampling technique. Study participants were engaged in both in-depth and biographic interviews to gain vivid insights into their experiences. Data was then analyzed using thematic and life line analysis. Findings of the study indicates that, formal support plays an important role in parent’s resilience by setting the pace for resilience. This is achieved through the emotional, psychological as well as financial support provided at the point of diagnosis, a stage that is characterized by high levels of stress. Parents perceived formal support as negative only when it becomes discriminatory and non-inclusive of children with disability. This is more evident in the allocation of resources to special and ordinary schools which sometimes makes it difficult for children with intellectual disability to be in an ordinary school. The study also identified other support systems of which support groups and family bonds proved to be the most beneficial. In situations where formal support is unavailable or limited, support groups and family bonds tends to contribute immensely towards family resilience. It was seen that family dynamics in households of children with intellectual disability is one that requires a constant reorganization of roles and resources to them function properly. For example, the study found that, to cope and function properly as a family, women often worked part time or quit work to care for the child with disability as well as take up other caring roles in the family. This seems good to maintain family equilibrium but could have negative effect on the trajectory of women in such households. Based on these findings, the study recommends that, policy makers in Sweden should review laws regulating the allocation of resources to schools to ensure inclusiveness in the school system especially for children with intellectual disability. Social workers and related professionals are called upon to provide strength- based services by helping families identify resources that support growth and development in the face of adversity. Further research should aim at having the perspective of the whole family especially that of siblings and the child with disability. Also, the long-term effect of gender roles on the economic situation of women in families of children with disability should be explored. Inconclusion, resilience is conceptualized as a complex process which requires the organization of resources at various levels to help families become strong and functional amidst the challenges of parenting a child with intellectual disability.