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Relationships, social and civic life

2.5 Emerging adults with CP: Activities and participation

2.5.2 Relationships, social and civic life

The limited Australian and International research around relationships, social and civic life has found emerging adulthood for young people with CP to be fraught with challenges. Young people with CP participate in less social activities, have less social contact, less intimate relationships and are provided with less information about important topics such as relationships and sex than their peers without disabilities (Blum et al., 1991; East & Orchard, 2014; Stevenson et al., 1997; Wiegerink et al., 2006; Wiegerink, Roebroeck, et al., 2010). People with severe or multiple disabilities, and those with cognitive impairments, face particularly high levels of disadvantage (Bottos et al., 2001; Morris, 2001; Reddihough et al., 2013; Tan et al., 2014; Wiegerink, Roebroeck, et al., 2010). Young people with the ability to walk without restrictions have higher levels of social and community participation than people with lower levels of gross motor function (Boucher, Dumas, Maltais, & Richards, 2010; Palisano et al., 2009). However, even those with the mildest CP (GMFCS Level I), have poorer outcomes than their peers without disability (Donkervoort et al., 2009).

The social and leisure activities young people with CP do participate in are more likely to be informal, passive, home-based, and performed alone or with parents rather than with peers (Shikako-Thomas, Shevell, et al., 2013). Unfortunately, research indicates that as children with CP move into emerging adulthood, their participation in recreational, physical and skill-based activities becomes even more restricted (Imms & Adair, 2017; Orlin et al., 2010). One recent study has found some positive increases in social activity participation during this period; however the lack

of comparison with young people without disability makes it difficult to interpret this finding (Imms & Adair, 2017). Young people with CP aged 9-21 and their parents have reported a range of facilitators or barriers to participation in physical activities specifically. These include physical limitations related to impairments in body structure or function, including fatigue or pain, environmental factors including availability (or lack) of adaptive equipment and devices, the presence (or lack) of knowledgeable support people, accessibility (or lack) of facilities and programs, and personal factors including self-perception, identity, and level of confidence (Shimmell, Gorter, Jackson, Wright, & Galuppi, 2013). One valuable exception identified as beneficial by some young people is participation in disability sport. Participants with mobility impairments aged 17-23 in a recent Scottish study identified benefits to not only physical health, but also social support and a sense of belonging, self-esteem and confidence, and reduced boredom and loneliness (Lumsdaine & Thurston, 2017).

In respect to relationships with parents, emerging adulthood is a time of renegotiating the parent-child relationship. Qualitative research in Canada with 20- 23 year olds with CP identified that young people were ready for increased autonomy from their parents. Some desired this because it was what other young people had and others because of increasing conflict within the family. Personal care needs were a barrier to increased autonomy for some young people whose families could not afford private services (Magill-Evans, Wiart, Darrah, & Kratochvil, 2005). This sentiment was echoed in qualitative research with the parents of fourteen 12-19 year olds with cerebral palsy, which identified physical dependence as a barrier to the privacy afforded to most emerging adults by their parents (Shikako-Thomas, Bogossian, Lach, Shevell, & Majnemer, 2013). Research conducted in the USA (Maggs et al., 2011) has identified that parents and their emerging adult children with CP do not necessarily agree on priorities for activities and participation, which could be a trigger for some of the conflict reported above. Young people were more likely to emphasise goals in education, employment, money management, transportation and travel, whereas their parents focused

more on priorities around self-identity, including friendships, hobbies and self- advocacy (Maggs et al., 2011).

Most young people aged 12-22 with CP in one study reported strong relationships with their parents. However, 33.3% of participants identified that they were treated like children and overprotected by their parents. Participants resented this treatment, and also displayed lower happiness, self-esteem and higher levels of anxiety than those who felt they were treated in an age-appropriate manner (Blum et al., 1991). A more recent Swedish study (Bjorquist et al., 2014) explored the qualitative transition experiences of twelve 17-18 year olds with CP from their own perspective, and identified similar themes in relation to parents. Participants enjoyed the security of living in their parental home and the fact that it meant they were rarely alone. However, they also reported feeling controlled and overprotected at times. They enjoyed opportunities to be away from their parents, even to simply be able to close their door. They looked forward to an independent future, but were not yet ready to move away from home, and worried about what it would be like and what support they would need (Bjorquist et al., 2014).

This same group of young people also reported many challenges in finding and maintaining friendships and relationships. Some experienced teasing and bullying, and many friends were only seen at school or during formal extracurricular activities. Participants especially felt they did not have the knowledge or confidence to pursue a romantic relationship. Practical challenges were also noted with participating in social and leisure activities. The fact that activities needed to be organised in advance was problematic and participants wished for a greater level of spontaneity (Bjorquist et al., 2014). Research conducted in the UK with people with severe disabilities identified similar challenges regarding making friends and participating in leisure activities. Unfortunately, the observation component of this research also identified that quite often young people are not effectively supported to make and interact with friends by their carers or teachers (Morris, 2001). Narrative research with Australians with CP aged 14-16 reinforced the importance of relationships with family and friends to these young people; they do want to be

actively involved in social and leisure activities, reflecting goals common to most young people (Cussen, Howie, & Imms, 2012). This emphasises the need for more work to done to both build the capacity of young people and break down the barriers they face in forming relationships.

The struggles for emerging adults with CP continue in relation to intimate relationships. An Australian case-control study with 335, 20-30 year olds with CP found that only 20% of participants had ever been married or partnered, compared to 70% of a population control group (Reddihough et al., 2013). Another Australian study with 60 people with physical disability identified that 38.6% had never experienced intercourse (McCabe, 1999). International research from Sweden and Italy has identified similar low levels of participation in intimate relationships, along with very few adults with CP having had children (Bottos et al., 2001; Sandstrom et al., 2004). A recent meta-analysis including data from 89,943 emerging and young adults with a range of chronic illnesses and disabilities found that the rate of being married/living in a de-facto relationship was reduced by 25% and the rate of having children by 38%, in comparison to peers without disability (Pinquart, 2014). Those with intellectual disability are particularly disadvantaged (Bottos et al., 2001; Reddihough et al., 2013), while people with physical disability, such as CP, have lower participation in relationships and sexual intercourse than those with sensory impairments (Retznik et al., 2017).

Research has identified that despite the low participation rates in romantic relationships and sexual activities, young people with CP have the same level of sexual interest as their peers without disabilities and a strong desire to know more about sexuality (East & Orchard, 2014; McCabe, 1999; McCabe et al., 2000; Wiegerink, Stam, et al., 2010). Unfortunately, research in the UK has identified that adults and carers often assume that sexuality is irrelevant to these young people, despite evidence to the contrary (Morris, 2001). Qualitative research in the USA with health professionals and disability service providers similarly highlighted a lack of discussion regarding sexuality with youth with physical disability, along with an unmet need for information about adaptation for sexual behaviours (Secor-Turner,

McMorris, & Scal, 2017). Of concern within Australian research, only 56% had ever received any sex education. Those that had received education were likely to have received it from the media or formal sex education classes, which is in comparison to the general population who are more likely to learn about sex from their parents or friends. This lack of discussion may convey negative messages to people with physical disability about their sexuality and lead to negative feelings about sexuality (McCabe, 1999). Other barriers to sexual experience include inadequate social skills, social isolation, lack of opportunity and practical barriers to dating, difficulty finding partners, and a fear of rejection (Howland & Rintala, 2001). Poor outcomes in this area are of particular concern given that research has shown a direct link between having a partner and maintaining sexual relationships, and measures of quality of life for adults with CP (Maestro-Gonzalez et al., 2018).

In sum, emerging adults with CP have the same goals as their peers in relation to having an active social and civic life, and participating in meaningful relationships. Despite this, their experiences remain restricted. Little is known about how young people feel about this, with few opportunities having been provided for emerging adults with CP to tell their stories about relationships and social life. The current study adds to knowledge in this area.