Character and coping styles

A small Australian qualitative study with nine 18-30 year olds with CP explored their perceptions of citizenship and the findings offer insight into some of the character, personal attributes and goals of this group (Yeung et al., 2008). Participants believed that citizenship meant making an active contribution to their community, giving back, and taking responsibility for themselves and others. They also considered citizenship to involve feeling a sense of inclusion and belonging, including recognising one’s own intrinsic worth. Many made active choices to demonstrate this through participating in community activities and committees, with the goals of being a role model to others with disability, advocating on behalf of them, or sharing their story to raise community awareness (Yeung et al., 2008). A large International study of 502 emerging adults with disability highlighted that a positive disability identity contributes to an increased sense of belonging,

particularly for those who self-identify with their disability (Raver, Murchake, & Chalk, 2018).

A qualitative exploration with 10 emerging adults with a range of disabilities highlighted the importance of creating their “own meaning” and to share their experiences of disability in the hope that others may learn from them and experience less challenges than they had. The authors labelled this an “altruistic sense of duty towards others with disabilities” (Mannino, 2015, p. e137). Other research provides evidence of similar themes, with participants wanting to feel worthwhile and be able to help others through sharing their story (Kim & Kang, 2003; Read et al., 2015). A Canadian phenomenological study reinforced that it is not unusual for young people with CP to feel strongly about contributing to society, to breaking down stereotypes, and mentoring others (Stewart et al., 2012). Emerging adults with disabilities are particularly likely to engage in advocacy type activities when they feel a strong sense of affiliation with the disability community (Nario-Redmond & Oleson, 2016).

The same Canadian research mentioned above (Stewart et al., 2012) also identified other personal factors that influenced young people’s capacity to participate in social activities. These included a social personality and self-confidence. Other Canadian qualitative research with 10 young people with CP aged 18-20 provides additional insights into personal factors, including their goals and view of what it means to be successful (King et al., 2000). Young people viewed success as being happy in life, which included being believed in, believing in yourself (self-efficacy), and being accepted by others (a sense of belonging). Happiness was linked to achieving goals and feeling fulfilled. Participants noted that they often faced barriers from other people who had low expectations of what they could achieve. However many used a personal coping style to turn this around by demonstrating a sense of determination to prove their doubters wrong (King et al., 2000). Determination became a defining feature of their character.

Research, albeit limited, also suggests that self-esteem is another personal factor likely to influence experience of young people with CP (Magill-Evans & Restall, 1991). While adolescents with CP, particularly girls, are likely to have significantly lower self-esteem than their peers without disabilities, results from one small study showed that self-esteem tended to increase from adolescence to young adulthood and differences between groups were no longer significant, although women with CP still had the lowest mean self-esteem scores (Magill-Evans & Restall, 1991). The researchers postulated that other personal factors may play a role in this change, such as an increasing ability to be able to separate their self-esteem from negative perceptions in the environment, and the ability to choose activities and environments in adulthood which reduce exposure to negative situations (Magill- Evans & Restall, 1991). Other research with 74 young people aged 20-25 years, mostly with mild CP (76% GMFCS I), identified a link between high self-efficacy and self-esteem and the likelihood of being involved in romantic and sexual relationships (Wiegerink, Stam, Ketelaar, Cohen-Kettenis, & Roebroeck, 2012). In another study, parents of 12-19 year olds with CP linked young people accepting themselves and having good self-esteem with better skills to cope with challenges faced, and improved quality of life overall (Shikako-Thomas, Bogossian, et al., 2013).

Limited research has also been conducted in the area of self-concept; “a person’s overall view of oneself and sense of worth, value and adequacy” (Gannotti et al., 2011, p. 855). A cross-sectional survey of 102 people with CP aged 21-58 in the USA identified that the majority of participants had a healthy self-concept, with less than 15% having low self-concept (Gannotti et al., 2011). Interestingly there was no correlation with GMFCS scores and self-concept, however it was identified that those with high self-concept were more likely to be living independently, employed, sexually active and have a driver’s licence, although the differences were not statistically significant (Gannotti et al., 2011).

Limited research with young people with a range of disabilities has identified important personal factors for a successful transition to adulthood (Stewart et al., 2010; Stewart et al., 2014). These include resilience, perseverance, effective coping

strategies, self-determination, and self-advocacy skills. In addition, it is important that young people have a good understanding of their disability and can articulate their disability-related needs (Stewart et al., 2010; Stewart et al., 2014). A recent Canadian study highlighted that young people who are self-confident, have well developed self-advocacy skills, and are aware of their rights are more likely to disclose their disability and request accommodations in the workplace that they are entitled to (Lindsay, Cagliostro, et al., 2018).

A recent USA study explored key attributes of resilience in a group of 31 high- achieving emerging adults with disability. Identified attributes included acceptance and perseverance - the ability to accept challenges and persevere despite adversity, the presence of social support, and having a purposeful life (Mannino, 2015). Perseverance includes a preparedness to work “harder and longer” than peers without disability to achieve the same outcomes, both in response to disability related needs, and to compensate for a lack of adjustments provided by institutions (Järkestig Berggren et al., 2016, p. 350). Contemporary qualitative Australian research with 30 high achieving university students with a range of disabilities identified a range of personal factors contributing to their success. These included several aspects of resilience: being aware of strengths and needs; ability to discuss their disability and related needs; confidence to advocate for adjustments and support; and problem solving skills (Ganguly et al., 2015). These concepts are similar to those previously described as self-advocacy skills.

Test and colleagues (2005) developed a conceptual framework of self-advocacy involving four components: knowledge of self, including awareness of disability related needs, strengths, preferences, goals and interests; knowledge of rights in a range of settings, including an understanding of how to advocate for change; communication skills including assertiveness, negotiation, articulation and compromise; and leadership, including advocating on behalf of others, and participating in advocacy organisations (Test, Fowler, & Wood, 2005). Canadian research gives additional support to the importance of self-advocacy skills. Poor self-advocacy skills were found to be a significant barrier to employment, and also

contributed to an unwillingness to disclose a disability and seek reasonable adjustments that may enable the person with disability to be successful in the workplace (Lindsay et al., 2015).