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

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 (2023). Mental health challenges and digital platform opportunities in patients and families affected by pediatric neuromuscular diseases - experiences from Switzerland. Digital health, 9, p. 20552076231213700. Sage 10.1177/20552076231213700

Preview

Text Gruebner_DigitHealth_2023.pdf - Published Version Available under License Creative Commons: Attribution (CC-BY). Download (470kB) | Preview

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.

Interest & Impact

Downloads

13 since deposited on 22 Nov 2023
13 in the past 12 months

Citations

5 Citations in Web of Science ®
6 Citations in Scopus

Search

in Google Scholar™

Services

Actions (login required)

Edit item

Actions (login required)

Edit item