When I do, I become someone: experiences of occupational performance in young adults with cerebral palsy

• Introduction Performance of daily activities and participation are often influenced throughout life in individuals with cerebral palsy (CP), even when the person has fairly good motor functions, and executive dysfunctions may also have an impact on performance in this group. However, it has rarely been described how persons with CP themselves perceive their performance of daily activities. Aim The aim of this study was to describe the experiences that young adults with CP have of occupational performance in everyday life. Methods Qualitative interview study with ten participants with CP, MACS I-II, aged 19-30 years. The data were analysed using a phenomenographic approach. Results The interviews resulted in five categories of perceptions of occupational performance, i.e doing: “Important to do”; “Demanding but can be facilitated”; “Excludes or includes”; “Diminishes me or makes me grow”; and “Comes at a price”. Whether doing diminished the participants or made them grow depends on the outcome of doing. When performing is too demanding and/or makes the participants feel excluded, they felt diminished as human beings. Performance that is facilitated and/or provides a sense of inclusion promotes personal growth. The participants pay a high price in terms of physical deterioration, pain, stress, and fatigue in their efforts to become who they want to be through doing. Conclusions The young adults with CP consider that, despite life being so demanding, it is extremely important to perform daily activities themselves and to feel included, as this makes them grow as human beings. Person-centred intervention methods based on personally important activities should be tested in order to meet the persons’ wishes and needs in their efforts to grow through DOING. Further research is needed to develop evaluation methods of how mental fatigue manifests in individuals with CP. The multifaceted difficulties to which CP often leads should be communicated to the persons themselves to enhance their self-awareness and give them the opportunity to explain their capabilities to others.

Ämnesord

MEDICIN OCH HÄLSOVETENSKAP  -- Hälsovetenskap -- Arbetsterapi (hsv//swe)

MEDICAL AND HEALTH SCIENCES  -- Health Sciences -- Occupational Therapy (hsv//eng)

Nyckelord

Activities of daily living; cerebral palsy; cognition; fatigue; self-concept; social participation

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