Experiences and reflections on living with a personal assistance service: a qualitative study of people with neuromuscular disease or spinal cord injury: A qualitative study of people with neuromuscular disease or spinal cord injury
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| Title: | Experiences and reflections on living with a personal assistance service: a qualitative study of people with neuromuscular disease or spinal cord injury: A qualitative study of people with neuromuscular disease or spinal cord injury |
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| Authors: | Andersen, Karoline Yde, Ravn, Sophie Lykkegaard, Krogh, Marlene, Handberg, Charlotte |
| Source: | Andersen, K Y, Ravn, S L, Krogh, M & Handberg, C 2025, 'Experiences and reflections on living with a personal assistance service : a qualitative study of people with neuromuscular disease or spinal cord injury', Disability and Rehabilitation, vol. 47, no. 5, pp. 1146-1155. https://doi.org/10.1080/09638288.2024.2364828 |
| Publisher Information: | Informa UK Limited, 2024. |
| Publication Year: | 2024 |
| Subject Terms: | Male, Adult, Neuromuscular Diseases/rehabilitation, Sense of Coherence, everyday life, sense of coherence, personal assistance service, Interviews as Topic, functioning, Activities of Daily Living, Humans, 10. No inequality, Qualitative Research, Aged, Persons with Disabilities/psychology, 4. Education, Middle Aged, Focus Groups, Neuromuscular disease, 16. Peace & justice, spinal cord injury, 3. Good health, Spinal Cord Injuries/psychology, Quality of Life, Female, interpretive description, qualitative research |
| Description: | To investigate how people with neuromuscular disease or spinal cord injury experience living with a personal assistance service. Qualitative study using the Interpretive Description methodology with Aaron Antonovsky’s theory of sense of coherence as a theoretical framework. The method was semi-structured individual interviews (n = 3) and focus group interviews (n = 5). In all, 19 adults with neuromuscular disease (n = 13) or spinal cord injury (n = 6) participated. The study adhered to the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines. Three themes were identified to understand living with personal assistance and how this affected everyday life: 1) Making meaning of a personal assistance service, 2) Managing a personal assistance service, and 3) Living with a personal shadow. Our findings provide an understanding of living with assistance and how it, among other things, is influenced by the legislation and the local authorities’ administration of the service. Participants explained this by an experience of a sense of coherence. For people with NMD and SCI, there are complex nuances associated with living with a personal assistance service. The findings illustrate that despite personal challenges of managing assistance services, it can meaningfully contribute to one’s life by enhancing one’s sense of coherence. Policy initiatives are important to help people living with neuromuscular disease (NMD) or spinal cord injury (SCI) access flexible personal assistance services, which can enable them to lead independent lives with enhanced meaningfulness.Professionals of people with NMD and SCI should provide knowledge and counseling on how to manage their personal assistance service, which includes taking into account practical, physical, and psychosocial considerations.To ensure optimizing the design and delivery of personal assistance services for the NMD and SCI populations, it is critical that policymakers are made aware of both the positive and challenging aspects of personal assistance services, and should consider engaging persons with lived experience when developing (or re-evaluating) them. Policy initiatives are important to help people living with neuromuscular disease (NMD) or spinal cord injury (SCI) access flexible personal assistance services, which can enable them to lead independent lives with enhanced meaningfulness. Professionals of people with NMD and SCI should provide knowledge and counseling on how to manage their personal assistance service, which includes taking into account practical, physical, and psychosocial considerations. To ensure optimizing the design and delivery of personal assistance services for the NMD and SCI populations, it is critical that policymakers are made aware of both the positive and challenging aspects of personal assistance services, and should consider engaging persons with lived experience when developing (or re-evaluating) them. |
| Document Type: | Article Other literature type |
| File Description: | application/pdf |
| Language: | English |
| ISSN: | 1464-5165 0963-8288 |
| DOI: | 10.1080/09638288.2024.2364828 |
| DOI: | 10.6084/m9.figshare.26013370 |
| DOI: | 10.6084/m9.figshare.26013370.v1 |
| Access URL: | https://pubmed.ncbi.nlm.nih.gov/38860281 https://pure.au.dk/portal/en/publications/eeac674e-8a66-4919-ad0b-0b0f6ec3e67e https://portal.findresearcher.sdu.dk/da/publications/91814a1d-4564-4f94-800a-cbf395615362 https://doi.org/10.1080/09638288.2024.2364828 http://www.scopus.com/inward/record.url?scp=86000378797&partnerID=8YFLogxK https://pure.au.dk/portal/en/publications/eeac674e-8a66-4919-ad0b-0b0f6ec3e67e https://doi.org/10.1080/09638288.2024.2364828 https://pure.au.dk/ws/files/433036867/Experiences_and_reflections_on_living_with_a_personal_assistance_service_a_qualitative_study_of_people_with_neuromuscular_disease_or_spinal_cord_inju.pdf |
| Rights: | CC BY |
| Accession Number: | edsair.doi.dedup.....730b066d1b580d21054c88dfd341bbf7 |
| Database: | OpenAIRE |
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Nájsť tento článok vo Web of Science | Abstract: | To investigate how people with neuromuscular disease or spinal cord injury experience living with a personal assistance service. Qualitative study using the Interpretive Description methodology with Aaron Antonovsky’s theory of sense of coherence as a theoretical framework. The method was semi-structured individual interviews (n = 3) and focus group interviews (n = 5). In all, 19 adults with neuromuscular disease (n = 13) or spinal cord injury (n = 6) participated. The study adhered to the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines. Three themes were identified to understand living with personal assistance and how this affected everyday life: 1) Making meaning of a personal assistance service, 2) Managing a personal assistance service, and 3) Living with a personal shadow. Our findings provide an understanding of living with assistance and how it, among other things, is influenced by the legislation and the local authorities’ administration of the service. Participants explained this by an experience of a sense of coherence. For people with NMD and SCI, there are complex nuances associated with living with a personal assistance service. The findings illustrate that despite personal challenges of managing assistance services, it can meaningfully contribute to one’s life by enhancing one’s sense of coherence. Policy initiatives are important to help people living with neuromuscular disease (NMD) or spinal cord injury (SCI) access flexible personal assistance services, which can enable them to lead independent lives with enhanced meaningfulness.Professionals of people with NMD and SCI should provide knowledge and counseling on how to manage their personal assistance service, which includes taking into account practical, physical, and psychosocial considerations.To ensure optimizing the design and delivery of personal assistance services for the NMD and SCI populations, it is critical that policymakers are made aware of both the positive and challenging aspects of personal assistance services, and should consider engaging persons with lived experience when developing (or re-evaluating) them. Policy initiatives are important to help people living with neuromuscular disease (NMD) or spinal cord injury (SCI) access flexible personal assistance services, which can enable them to lead independent lives with enhanced meaningfulness. Professionals of people with NMD and SCI should provide knowledge and counseling on how to manage their personal assistance service, which includes taking into account practical, physical, and psychosocial considerations. To ensure optimizing the design and delivery of personal assistance services for the NMD and SCI populations, it is critical that policymakers are made aware of both the positive and challenging aspects of personal assistance services, and should consider engaging persons with lived experience when developing (or re-evaluating) them. |
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| ISSN: | 14645165 09638288 |
| DOI: | 10.1080/09638288.2024.2364828 |