The Psychosocial Impact of Parkinson’s Disease on the Wider Family Unit: A Focus on the Offspring of Affected Individuals

The psychosocial effects of Parkinson’s disease (PD) on those affected by the condition are well documented (e.g. Calne et al., 2008; Frisina et al., 2008; Morley et al., 2007a; Ravina et al., 2007; Schrag et al., 2003; Slawek et al., 2005). A significant body of literature has also emerged investigating the impact of PD on affected individual’s spouses and carers (e.g. Carter et al., 1998; Dyck, 2009; Lokk, 2008; Morley et al., 2007b; O’Connor & McCabe, 2010; Schrag et al., 2006). Perhaps surprisingly however, the impact of parental PD on the psychosocial adjustment and quality of life of both young and grown up children has, until recently, received little attention. Although Parkinson’s disease is commonly regarded as a disease of the elderly a significant number are diagnosed before the age of fifty, and in approximately 5-10% the condition is apparent prior to age forty (Clarke & Moore, 2007). There is, therefore, the potential for children of a range of ages, young to adult, to be affected in a variety of ways by their parent’s condition. Previous studies focusing on children’s response to a range of parental conditions and disabilities identify a number of recurrent themes. For example, children report elevated levels of depression and anxiety (Black et al., 2003; Forehand et al., 1988; Somers, 2007; Visser-Meily, et al., 2005; Yahav et al., 2007). Additionally, many experience changing roles and heightened responsibility (Caton et al., 1998; Strunin & Boden, 2004; Yahav et al., 2007). The provision of information for children regarding their parent’s condition is also frequently raised (Caton et al., 1998; Cross & Rintell, 1999; Mukherjee et al, 2002). Previous studies also indicate that not all parental conditions affect children similarly. For example, some have suggested that children of parents with spinal cord injury appear well-adjusted to their parent’s condition (Alexander et al., 2002; Buck & Hohmann, 1981). Additionally, children of parents with inflammatory bowel disease report some positive as well as negative responses to their parent’s condition (Mukherjee et al, 2002). The aims of this chapter are to present the emerging body of literature that focuses specifically on the impact of parental Parkinson’s. The development of a questionnaire, the Parental Illness Impact Scale, (Schrag et al., 2004a; Morley et al., 2010a) to measure this impact has significantly aided research and allowed the field to move forward from earlier qualitative work. The development of this questionnaire is briefly outlined in the coming chapter. Research that has followed indicates that the children of people with Parkinson’s