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https://doi.org/10.21256/zhaw-29310| Publication type: | Article in scientific journal |
| Type of review: | Peer review (publication) |
| Title: | Mental health challenges and digital platform opportunities in patients and families affected by pediatric neuromuscular diseases : experiences from Switzerland |
| Authors: | Gruebner, Oliver van Haasteren, Afua Hug, Anna Elayan, Suzanne Sykora, Martin Albanese, Emiliano Stettner, Georg M. Waldboth, Veronika Messmer-Khosla, Sandra Enzmann, Cornelia Baumann, Dominique von Wyl, Viktor Fadda, Marta Wolf, Markus von Rhein, Michael |
| et. al: | No |
| DOI: | 10.1177/20552076231213700 10.21256/zhaw-29310 |
| Published in: | Digital Health |
| Volume(Issue): | 9 |
| Issue Date: | 2023 |
| Publisher / Ed. Institution: | Sage |
| ISSN: | 2055-2076 |
| Language: | English |
| Subjects: | Duchenne muscular dystrophy; Accessibility; Digital place; Disability; Inclusion; Neuromuscular disease; Psychological distress |
| Subject (DDC): | 616.7: Diseases of musculoskeletal system and orthopaedics |
| Abstract: | Receiving the diagnosis of a severe disease may present a traumatic event for patients and their families. To cope with the related challenges, digital interventions can be combined with traditional psychological support to help meet respective needs. We aimed to 1) discuss the most common consequences and challenges for resilience in Neuro Muscular Disease patients and family members and 2) elicit practical needs, concerns, and opportunities for digital platform use. We draw from findings of a transdisciplinary workshop and conference with participants ranging from the fields of clinical practice to patient representatives. Reported consequences of the severe diseases were related to psychosocial challenges, living in the nexus between physical development and disease progression, social exclusion, care-related challenges, structural and financial challenges, and non-inclusive urban design. Practical needs and concerns regarding digital platform use included social and professional support through these platforms, credibility and trust in online information, and concerns about privacy and informed consent. Furthermore, the need for safe, reliable, and expert-guided information on digital platforms and psychosocial and relationship-based digital interventions was expressed. There is a need to focus on a family-centered approach in digital health and social care and a further need in researching the suitability of digital platforms to promote resilience in the affected population. Our results can also inform city councils regarding investments in inclusive urban design allowing for disability affected groups to enjoy a better quality of life. |
| URI: | https://digitalcollection.zhaw.ch/handle/11475/29310 |
| Fulltext version: | Published version |
| License (according to publishing contract): | CC BY 4.0: Attribution 4.0 International |
| Departement: | School of Health Sciences |
| Organisational Unit: | Institute of Nursing (IPF) |
| Published as part of the ZHAW project: | Die Versorgung von Menschen mit neuromuskulären Erkrankungen in der Schweiz |
| Appears in collections: | Publikationen Gesundheit |
Files in This Item:
| File | Description | Size | Format | |
|---|---|---|---|---|
| 2023_Gruebner-etal_Mental-health-challenges-digital-platform-opportunities-pediatric-NMD.pdf | 1.16 MB | Adobe PDF |  View/Open |
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Gruebner, O., van Haasteren, A., Hug, A., Elayan, S., Sykora, M., Albanese, E., Stettner, G. M., Waldboth, V., Messmer-Khosla, S., Enzmann, C., Baumann, D., von Wyl, V., Fadda, M., Wolf, M., & von Rhein, M. (2023). Mental health challenges and digital platform opportunities in patients and families affected by pediatric neuromuscular diseases : experiences from Switzerland. Digital Health, 9. https://doi.org/10.1177/20552076231213700
Gruebner, O. et al. (2023) ‘Mental health challenges and digital platform opportunities in patients and families affected by pediatric neuromuscular diseases : experiences from Switzerland’, Digital Health, 9. Available at: https://doi.org/10.1177/20552076231213700.
O. Gruebner et al., “Mental health challenges and digital platform opportunities in patients and families affected by pediatric neuromuscular diseases : experiences from Switzerland,” Digital Health, vol. 9, 2023, doi: 10.1177/20552076231213700.
GRUEBNER, Oliver, Afua VAN HAASTEREN, Anna HUG, Suzanne ELAYAN, Martin SYKORA, Emiliano ALBANESE, Georg M. STETTNER, Veronika WALDBOTH, Sandra MESSMER-KHOSLA, Cornelia ENZMANN, Dominique BAUMANN, Viktor VON WYL, Marta FADDA, Markus WOLF und Michael VON RHEIN, 2023. Mental health challenges and digital platform opportunities in patients and families affected by pediatric neuromuscular diseases : experiences from Switzerland. Digital Health. 2023. Bd. 9. DOI 10.1177/20552076231213700
Gruebner, Oliver, Afua van Haasteren, Anna Hug, Suzanne Elayan, Martin Sykora, Emiliano Albanese, Georg M. Stettner, et al. 2023. “Mental Health Challenges and Digital Platform Opportunities in Patients and Families Affected by Pediatric Neuromuscular Diseases : Experiences from Switzerland.” Digital Health 9. https://doi.org/10.1177/20552076231213700.
Gruebner, Oliver, et al. “Mental Health Challenges and Digital Platform Opportunities in Patients and Families Affected by Pediatric Neuromuscular Diseases : Experiences from Switzerland.” Digital Health, vol. 9, 2023, https://doi.org/10.1177/20552076231213700.
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