Recognising reciprocity over the life course: adults with cerebral palsy and their non-disabled siblings

Abstract

This study addresses the development of the relationship between individuals with moderate to severe cerebral palsy and their non-disabled siblings over their life course. There has as yet been no focus on the sibling relationships of adults with moderate to severe cerebral palsy. Those with moderate to severe cerebral palsy can require high levels of personal care and assistance with activities of daily living throughout their lives, due to their often significant physical and communication impairments. This coupled with the fact that they are living longer and outliving their parents, means that the support previously provided by parents may pass to siblings. Previous research into the transition from parental care has focused on people with intellectual disability, with those with cerebral palsy as a sub-group. This approach overlooks the quite specific needs of individuals with cerebral palsy, which warrant separate attention. Previous research has also treated this transition as a singular event rather than looking at it within the context of the person’s life course. Given that sibling relationships are the longest and most durable throughout a person’s life, it makes sense to view the later life relationships between individuals with cerebral palsy and their non-disabled siblings in the context of their earlier life experiences. The aim of this study was to explore the relationships between individuals with moderate to severe cerebral palsy aged 40 years and over and their non-disabled siblings in the context of the future: when parents can no longer provide care for their adult son or daughter with cerebral palsy. To address this aim a qualitative research design was adopted, with symbolic interactionism as the theoretical underpinning. Two in-depth interviews were conducted with each of 12 adults with cerebral palsy and 16 of their non-disabled siblings. The interviews took a life-course approach, asking participants to describe their childhood, emerging adulthood, and later life circumstances and sibling interactions. Constructivist grounded theory was used to analyse the data, identify the primary finding and develop a conceptual framework. Analysis of the data highlighted the diversity of sibling relationships. Nonetheless, various pathways were identified. Living together with or being separated from their non-disabled siblings in childhood affected the sibling relationship and influenced either the development of warm relationships or a feeling of separation and distance. In young adulthood, participants with cerebral palsy who shared transition milestones with their non-disabled siblings and developed personal autonomy further strengthened their sibling bond. Subsequently, in middle and older age, facing parents’ and their own ill health and mortality tended to bring siblings closer together. Taking a life-course approach to the relationship between individuals with cerebral palsy and their non-disabled siblings led to the identification of the primary finding of this study that reciprocity can develop in the relationship between people with moderate to severe cerebral palsy and their non-disabled siblings. Reciprocity is recognised as operating as a generalised moral norm, with people motivated to reciprocate the help they receive from others based on obligation or altruism. Reciprocity may be either instrumental, through the exchange of practical aid and direct services, or symbolic, relating to the mutual trust, regard and respect which people develop towards those with whom they have a long-term relationship. The existence of reciprocity in the sibling relationships of people with moderate to severe cerebral palsy and their non-disabled siblings is particularly important in middle and later life when parents are no longer as actively involved in the life of their son or daughter with cerebral palsy. At this time sibling relationships may take on greater significance. Four variables, contact, shared experiences, parental status and role, and support needs, formed the basis of a conceptual framework for understanding the development of instrumental and symbolic reciprocity between participants with cerebral palsy and their non-disabled siblings. The framework provides a useful way for people with cerebral palsy, their family members, and service providers to consider the roles which people with cerebral palsy and their non-disabled siblings might play in each other’s lives. This study is an important beginning in identifying a nuanced relationship between individuals with cerebral palsy and their siblings in which reciprocity plays a significant and previously unrecognised part.