Mental health challenges and digital platform opportunities in patients and families affected by pediatric neuromuscular diseases - experiences from Switzerland.

Autor:	Gruebner O; Department of Geography, University of Zurich, Zurich, Switzerland.; Department of Epidemiology, Epidemiology, Biostatistics, and Prevention Institute, University of Zurich, Zurich, Switzerland., van Haasteren A; Institute of Public Health, Università della Svizzera italiana, Lugano, Switzerland., Hug A; Department of Geography, University of Zurich, Zurich, Switzerland., Elayan S; Centre for Information Management, School of Business and Economics, Loughborough University, Loughborough, UK., Sykora M; Centre for Information Management, School of Business and Economics, Loughborough University, Loughborough, UK., Albanese E; Institute of Public Health, Università della Svizzera italiana, Lugano, Switzerland., Stettner GM; Neuromuscular Center Zurich and Department of Pediatric Neurology, University of Zurich, University Children's Hospital Zurich, Zurich, Switzerland., Waldboth V; Institute of Nursing, School of Health Sciences, Zurich University of Applied Sciences, Winterthur, Switzerland., Messmer-Khosla S; Schweizerische Muskelgesellschaft, Zurich, Switzerland., Enzmann C; Department of Neuropediatrics, Neuromuscular Center, University Children's Hospital Basel, Basel, Switzerland., Baumann D; Swiss Registry for Neuromuscular Disorders (Swiss-Reg-NMD), Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland., von Wyl V; Department of Epidemiology, Epidemiology, Biostatistics, and Prevention Institute, University of Zurich, Zurich, Switzerland., Fadda M; Institute of Public Health, Università della Svizzera italiana, Lugano, Switzerland., Wolf M; Department of Psychology, University of Zurich, Zurich, Switzerland., von Rhein M; Child Development Center, University Children's Hospital Zurich, University of Zurich, Zurich, Switzerland.
Jazyk:	angličtina
Zdroj:	Digital health [Digit Health] 2023 Nov 16; Vol. 9, pp. 20552076231213700. Date of Electronic Publication: 2023 Nov 16 (Print Publication: 2023).
DOI:	10.1177/20552076231213700
Abstrakt:	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. (© The Author(s) 2023.)
Databáze:	MEDLINE
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