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QUESTIONS: How do older adolescents with cerebral palsy who are at the transition stage to adult life define success? What are the factors related to success?
Design
Exploratory qualitative study.
Setting
Southwestern Ontario, Canada.
Participants
10 adolescents with cerebral palsy aged 18–20 years (mean age 19 y, 70% women). 5 adolescents were nearing the end of high school, 2 had recently graduated, and 3 had just begun university or college. 2 adolescents were non-ambulatory. Participants had to have the cognitive and communicative ability to understand abstract questions and articulate thoughts.
Methods
2 hour semistructured interviews were held with each participant. Questions were designed to obtain the participant's view of the meaning of success in life and the factors that helped or hindered success. Interviews were audiotaped and transcribed verbatim. Transcripts were coded according to a coding scheme; a subset of the transcripts was coded separately by 2 individuals to ensure validity. A constant comparative method was used to derive emergent themes. 4 participants attended a focus group to ensure validity of the themes.
Main findings
The emergent psychosocial themes dealt with what success meant and 3 key factors related to success: being believed in by others, believing in yourself, and being accepted by others.
Participants defined success as being happy in life and described happiness as a characteristic of successful role models. Happiness was associated with meeting personal goals, feeling fulfilled, and enjoying what one does in life.
Being believed in by others was a key factor in being successful in life. Participants felt that faith and support given by others provided a sense of competence for reaching goals. Participants expressed that “barrier people” who lacked belief in people with disabilities (a “limiting attitude”) limited their opportunities. Participants coped with those having limiting attitudes by having the determination to succeed and prove them wrong.
Believing in yourself referred to having a sense of self efficacy and positive thinking. Being believed in by others could increase self confidence and the sense of self efficacy.
Being accepted by others gave participants a sense of belonging, which was part of feeling success in life. Participants expressed the importance of having relationships and belonging to groups of people with and without disabilities.
Conclusions
Older adolescents with cerebral palsy who were facing the transition to adult life perceived success to mean being happy in life. Factors related to success were being believed in by others, believing in yourself, and being accepted by others.
Commentary
Limited research is available on how people with non-progressive physical disabilities view success in life and what they desire for their future. This qualitative study by King et al is one of the few studies that explores this potentially difficult period of transition to adult life from the perspective of adolescents with visible physical disabilities.
The 10 participants in this study were Canadian, had cerebral palsy, were capable of understanding abstract questions and had intelligible speech. Findings may differ therefore for other populations.
The findings show that more similarities than differences exist among adolescents with and without physical disabilities. Like all adolescents, participants in this study wanted to be happy, and happiness was associated with meeting personal goals and having friends. In addition, participants felt that the attitudes of important people in their lives, such as parents and teachers, had a major effect on their ability to achieve their goals and be successful.
The findings are relevant to parents, paediatric nurses, teachers, and other healthcare professionals who work with children and youths with physical disabilities in acute care, ambulatory care, or community settings. The findings increase our knowledge about factors that help or hinder adolescents with physical disabilities in being successful. The study stresses the importance of parents and service providers in encouraging the community to be more supportive and accepting of individuals with disabilities. In addition, this study is useful to parents because it shows the importance of supportive relationships within the family, and the role of encouragement and guidance in promoting self acceptance and self efficacy among children and youths with disabilities.
This study helps to enrich our understanding of what it means for adolescents to live with a physical disability and factors that can enhance their quality of life. Further research is needed to determine whether these findings can be replicated in people of other ages and with other disabilities.
Footnotes
Sources of funding: Canadian Occupational Therapy Foundation and Thames Valley Children's Centre.
For correspondence: Dr G A King, Research Program, Thames Valley Children's Centre, 779 Base Line Road East, London, Ontario N6C 5V6, Canada.