Clinical rehabilitation · 2024
Perceptions of digitally supported home exercise for people with Parkinson's disease: A qualitative study.
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Sedhed Jenny, Johansson Hanna, Åkesson Elisabet, Franzén Erika, Leavy Breiffni
Аннотация
BACKGROUND: Digitally supported home exercise offers the potential to expand accessibility to rehabilitation. However, little is known about how people with Parkinson's disease experience performing home exercise programs using digital delivery.
OBJECTIVE: To explore and describe how people with Parkinson's disease perceive digital home-based exercise that is not supported in real-time, and how it affected their everyday lives.
METHODS: This study was qualitative in nature, using qualitative content analysis with an inductive approach. In-depth, individual, semi-structured interviews were held with 14 participants with Parkinson's disease.
RESULTS: Two overarching themes were formed: "Active agency in the face of uncertainty" and "The home - safe space or disability on display". The overarching themes were formed by four themes: 1) resisting the disease - a hope and a burden, 2) interpreting mixed messages, 3) home exercise - consideration and responsibility, and 4) the social context - judgement and support. Participants with Parkinson's disease believe that home exercise enables them to actively counter the disease, and this belief serves as both a source of hope but also a burden. Although perceived as advantageous, digitally supported home exercise may also incur becoming vulnerable to exposing one's disability.
CONCLUSIONS: People with Parkinson's disease struggle to reconcile their beliefs about exercise with that which is encouraged or discouraged by those around them. Exercise in the home involves a dynamic interplay between achieving self-directed goals while trying to balance social consideration and maintaining integrity of identity.
OBJECTIVE: To explore and describe how people with Parkinson's disease perceive digital home-based exercise that is not supported in real-time, and how it affected their everyday lives.
METHODS: This study was qualitative in nature, using qualitative content analysis with an inductive approach. In-depth, individual, semi-structured interviews were held with 14 participants with Parkinson's disease.
RESULTS: Two overarching themes were formed: "Active agency in the face of uncertainty" and "The home - safe space or disability on display". The overarching themes were formed by four themes: 1) resisting the disease - a hope and a burden, 2) interpreting mixed messages, 3) home exercise - consideration and responsibility, and 4) the social context - judgement and support. Participants with Parkinson's disease believe that home exercise enables them to actively counter the disease, and this belief serves as both a source of hope but also a burden. Although perceived as advantageous, digitally supported home exercise may also incur becoming vulnerable to exposing one's disability.
CONCLUSIONS: People with Parkinson's disease struggle to reconcile their beliefs about exercise with that which is encouraged or discouraged by those around them. Exercise in the home involves a dynamic interplay between achieving self-directed goals while trying to balance social consideration and maintaining integrity of identity.