COMPLETED RESEARCH

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

Project Team

Dr Angela Dew
Prof. Susan Balandin
Prof. Gwynnyth Llewellyn

Background

Many people with moderate and severe levels of cerebral palsy have significant physical and cognitive impairments and must rely upon others including their parents to assist them with their personal care, activities of daily living, mobility, and communication (Balandin & Morgan, 1997). With improvements in health care for people with cerebral palsy, many now outlive their parents (Strauss et al., 2008), and so they may turn to their non-disabled siblings to provide ongoing support. Little is known about the effect of parental decline on the relationship between adults with moderate to severe cerebral palsy and their non-disabled siblings.

Aim

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.

Research Design

A qualitative research design was adopted, with symbolic interactionism as the theoretical underpinning (Blumer, 1969). 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 (Elder, 1994), asking participants to describe their childhood, emerging adulthood, and later life circumstances and sibling interactions. Constructivist grounded theory (Charmaz, 2006) was used to analyse the data, identify the primary finding and develop a conceptual framework.

Findings and Implications

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 (Antonucci & Jackson, 1989; Gouldner, 1969). 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 (Horwitz et al., 1996; Molm et al., 2007).

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.

References

Antonucci, T., & Jackson, J. (1989). Successful ageing and life course reciprocity. In A. Warnes (Ed.), Human Ageing and Later Life: Multidisciplinary perspectives (pp. 83-95). London: Age Concern Institute of Gerontology.

Balandin, S., & Morgan, J. (1997). Adults with cerebral palsy: What's happening? Journal of Intellectual and Developmental Disability, 22(2), 109-124.

Blumer, H. (1969). Symbolic Interactionism. Englewood Cliffs: Prentice-Hall.

Charmaz, K. (2006). Constructing Grounded Theory: A practical guide through qualitative analysis. London: Sage Publications.

Elder, G., Jnr. (1994). Time, human agency, and social change: Perspectives on the life course. Social Psychology Quarterly, 57(1), 4-15.

Gouldner, A. (1960). The norm of reciprocity: A preliminary statement. American Sociological Review, 25, 161-178.

Horwitz, A., Reinhard, S., & Howell-White, S. (1996). Caregiving as reciprocal exchanges in families with seriously mentally ill members. Journal of Health and Social Behaviour, 37, 149-162.

Molm, U., Schaefer, D., & Collett, J. (2007). The value of reciprocity. Social Psychology Quarterly, 70, 199-217.

Strauss, D., Brooks, J., Rosenbloom, L., & Shavelle, R. (2008). Life expectancy in cerebral palsy: an update. Developmental Medicine & Child Neurology, 50, 487-493.

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