'Thinking about myself?' Experiences of parents of adolescents with cerebral palsy: A qualitative study to guide the implementation of a service for families.

Background: Recently, there has been an increase in the development of transition services for adolescents with cerebral palsy (CP). Studies have emphasized the importance of addressing parents' needs during their children's adolescence. Aims: This study aimed to understand how parents experience th...

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Publicado en:Child: Care, Health & Development Vol. 49; no. 5; pp. 870 - 879
Autores principales: Silvério, Ana Paula M., Mancini, Marisa C., Antunes, Fernanda I. T., Figueiredo, Priscilla R. P., Bueno, Kátia M. P., Brandão, Marina B.
Formato: research tables/charts Journal Article
Publicado: Wiley-Blackwell Sep2023
Acceso en línea:Ver este registro en EBSCOhost
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      dt: Sep2023
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        atl: 'Thinking about myself?' Experiences of parents of adolescents with cerebral palsy: A qualitative study to guide the implementation of a service for families.
      aug:
        au:
          Silvério, Ana Paula M.
          Mancini, Marisa C.
          Antunes, Fernanda I. T.
          Figueiredo, Priscilla R. P.
          Bueno, Kátia M. P.
          Brandão, Marina B.
        affil: Graduate Program in Rehabilitation Sciences, Universidade Federal de Minas Gerais, Belo Horizonte, Brazil
      sug:
        subj:
          Caregiver Support
          Parental Attitudes
          Cerebral Palsy In Adolescence
          Implementation Science
          Family
          Program Evaluation
          Content Validity
          Outcome Assessment
          Transitional Care In Adulthood
          Qualitative Studies
          Human
          Family Support
          Behavioral Changes
          Community Living
          Adolescence
          Adult
          Descriptive Statistics
          Psychological Well-Being
          Comparative Studies
          Adolescent: 13-18 years
          Adult: 19-44 years
      ab: Background: Recently, there has been an increase in the development of transition services for adolescents with cerebral palsy (CP). Studies have emphasized the importance of addressing parents' needs during their children's adolescence. Aims: This study aimed to understand how parents experience the adolescence and transition to adulthood of their adolescents with CP and to identify relevant components for the development of a service for families. Methods and procedures: A qualitative study was conducted with 18 families of adolescents with CP. Caregivers were purposely recruited from a transition programme called Adolescence in Focus Program. Individual interviews were conducted using a semistructured script. Then, the caregivers were invited to participate in focus groups. The interviews and focus groups were recorded and transcribed for content analysis. Results: Three categories emerged: 'The onset of adolescence', 'What will our future be?' and 'Support and services: paths to follow'. The adolescents' behavioural changes seemed to be intensified by their restricted social participation. Parents reported the desire for their adolescents to become independent in daily activities. Regarding their own future, they aimed to re‐establish the occupational roles that were interrupted. Conclusion: Information from this study guided the design of a programme for families regarding content, format and outcomes.
      pubtype: Academic Journal
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      ougenre: Article
    language: English
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