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

Authors :
Oliver Gruebner
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
Michael von Rhein
Source :
Digital Health, Vol 9 (2023)
Publication Year :
2023
Publisher :
SAGE Publishing, 2023.

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.

Details

Language :
English
ISSN :
20552076
Volume :
9
Database :
Directory of Open Access Journals
Journal :
Digital Health
Publication Type :
Academic Journal
Accession number :
edsdoj.5cc1d01618e463dbca452b5e73266ae
Document Type :
article
Full Text :
https://doi.org/10.1177/20552076231213700