Views of teenage children about the effects of a Parent's mobility disability

Abstract

BackgroundFew U.S. studies have explored how children experience a parent's mobility disability and its effects on their daily lives. ObjectiveWe aimed to engage youth ages 13–17 who had at least one parent with mobility disability in describing their perceptions of their parent's disability and its consequences for their daily and family life. MethodsParticipants videoed and photographed their experiences following general guidelines from the researchers about topics of interest. Participants made their own choices about what they submitted. We used conventional content analysis to identify broad themes. ResultsThe mean (standard deviation) age of the 10 participants was 15.2 (1.9) years; 5 were male; 9 participants were white. All 5 girls submitted multiple self-focused (selfie) videos made in their bedrooms; the 5 boys submitted more diverse data files. Several broad themes or topics emerged including: the effects of timing and trajectory of the parent's disability; perceptions of early maturity and responsibility; fears and frustrations relating to the parent's disability; support and emerging resilience; and sense of social justice. Participants generally felt their parents' disability made them become – compared to their peers – more mature, responsible, capable of performing household tasks, and aware of disability civil rights. ConclusionsParticipants raised many issues that health care providers should be aware of when youth have parents with mobility disability. A parent's mobility disability may be associated with resilience but also may pose challenges for youth. More research is needed to understand better adolescents' experiences and how clinicians might best assist these youth.