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

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.

Digital Platform Uses for Help and Support Seeking of Parents With Children Affected by Disabilities: Scoping Review.

BACKGROUND: Receiving a diagnosis that leads to severe disability in childhood can cause a traumatic experience with long-lasting emotional stress for patients and family members. In recent decades, emerging digital technologies have transformed how patients or caregivers of persons with disabilities manage their health conditions. As a result, information (eg, on treatment and resources) has become widely available to patients and their families. Parents and other caregivers can use digital platforms such as websites or social media to derive social support, usually from other patients and caregivers who share their lived experiences, challenges, and successes on these platforms. However, gaps remain in our understanding of platforms that are most frequently used or preferred among parents and caregivers of children with disabilities. In particular, it is not clear what factors primarily drive or discourage engagement with these digital tools and what the main ethical considerations are in relation to these tools. OBJECTIVE: We aimed to (1) identify prominent digital platforms used by parents or caregivers of children with disabilities; (2) explore the theoretical contexts and reasons for digital platform use, as well as the experiences made with using these platforms reported in the included studies; and (3) identify any privacy and ethical concerns emerging in the available literature in relation to the use of these platforms. METHODS: We conducted a scoping review of 5 academic databases of English-language articles published within the last 10 years for diseases with childhood onset disability and self-help or parent/caregiver-led digital platforms. RESULTS: We identified 17 papers in which digital platforms used by parents of affected children predominantly included social media elements but also search engines, health-related apps, and medical websites. Information retrieval and social support were the main reasons for their utilization. Nearly all studies were exploratory and applied either quantitative, qualitative, or mixed methods. The main ethical concerns for digital platform users included hampered access due to language barriers, privacy issues, and perceived suboptimal advice (eg, due to missing empathy of medical professionals). Older and non-college-educated individuals and ethnic minorities appeared less likely to access information online. CONCLUSIONS: This review showed that limited scientifically sound knowledge exists on digital platform use and needs in the context of disabling conditions in children, as the evidence consists mostly of exploratory studies. We could highlight that affected families seek information and support from digital platforms, as health care systems seem to be insufficient for satisfying knowledge and support needs through traditional channels.

The Mobile Health App Trustworthiness Checklist: Usability Assessment.

BACKGROUND: The mobile health (mHealth) app trustworthiness (mHAT) checklist was created to identify end users' opinions on the characteristics of trustworthy mHealth apps and to communicate this information to app developers. To ensure that the checklist is suited for all relevant stakeholders, it is necessary to validate its contents. OBJECTIVE: The purpose of this study was to assess the feasibility of the mHAT checklist by modifying its contents according to ratings and suggestions from stakeholders familiar with the process of developing, managing, or curating mHealth apps. METHODS: A 44-item online survey was administered to relevant stakeholders. The survey was largely comprised of the mHAT checklist items, which respondents rated on a 5-point Likert scale, ranging from completely disagree (1) to completely agree (5). RESULTS: In total, seven professional backgrounds were represented in the survey: administrators (n=6), health professionals (n=7), information technology personnel (n=6), managers (n=2), marketing personnel (n=3), researchers (n=5), and user experience researchers (n=8). Aside from one checklist item-"the app can inform end users about errors in measurements"-the combined positive ratings (ie, completely agree and agree) of the checklist items overwhelmingly exceeded the combined negative ratings (ie, completely disagree and disagree). Meanwhile, two additional items were included in the checklist: (1) business or funding model of the app and (2) details on app uninstallation statistics. CONCLUSIONS: Our results indicate that the mHAT checklist is a valuable resource for a broad range of stakeholders to develop trustworthy mHealth apps. Future studies should examine if the checklist works best for certain mHealth apps or in specific settings.

Development of the mHealth App Trustworthiness checklist.

BACKGROUND: Mobile health applications (mHealth apps) currently lack a consensus on substantial quality and safety standards. As such, the number of individuals engaging with untrustworthy mHealth apps continues to grow at a steady pace. OBJECTIVE: The purpose of this study was to investigate end-users' opinions on the features or actions necessary for trustworthy mHealth apps; and to convey this information to app developers via a succinct but informative checklist: the mHealth app trustworthiness checklist. METHODS: The checklist was formulated in three stages: (a) a literature review of studies identified the desirable features of the most prolific mHealth apps (health and fitness apps); (b) four focus group sessions with past or current users of these apps (n = 20); and (c) expert feedback on whether the checklist items are conceivable in a real-life setting (n = 6). RESULTS: Five major themes emerged from the focus group discussions: informational content, organizational attributes, societal influence, technology-related features, and user control factors. The mHealth app trustworthiness checklist was developed to incorporate these five themes and subsequently modified following expert consultation. In addition to the trustworthiness themes, we identified features that lie between trust and mistrust (limited digital literacy and indifference) as well as 10 features and actions that cause end-users to mistrust mHealth apps. CONCLUSION: This study contributes to the evidence base on the attributes of trustworthy mHealth apps. The mHealth app trustworthiness checklist is a useful tool in advancing continued efforts to ensure that health technologies are trustworthy.