Journal of Medical Internet Research - International Scientific Journal for Medical Research, Information and Communication on the Internet

Journal of Medical Internet Research - International Scientific Journal for Medical Research, Information and Communication on the Internet

The development of digital health interventions (DHIs) for severe mental health problems is fast-paced. Researchers are beginning to consult service users to inform DHIs; however, much of this involvement has been limited to feedback on specific interventions post-DHI development. This study had two aims: 1. explore service user views towards DHIs for severe mental health problems; and 2. make recommendations for specific content within DHIs based on service user needs and suggestions. Qualitative interviews with eighteen people with severe mental health problems focussed on two domains: 1) views about DHIs for severe mental health problems; and 2) ideas for future DHI content and design features. Data were analysed thematically. Participants responses were captured in five key themes: 1) DHIs could be empowering tools that instigate reflection and change; 2) society is already divided; DHIs will further increase this divide; 3) considerations must be made about who has access to DHI data and how this data may be used; 4) DHIs should not be delivered without other support options; and 5) DHIs should provide a positive, fun, practical and interactive method for self-management. Participants found DHIs acceptable due to the empowering nature of self-management and ability to take ownership of their own healthcare needs. However, concerns included the potential for digital exclusion, privacy and confidentiality and fears about DHIs being used to replace other mental health services. Service users want tools to help them self-manage their mental health, but also provide positive and recovery-focussed content that can be used in conjunction with other support options.

Background: Much has been written about public involvement (PI) in health and social care research, but underpinning values are rarely made explicit despite the potential for these to have significant influence on the practice and assessment of PI.Objective: The narrative review reported here is part of a larger MRC‐funded study which is producing a framework and related guidance on assessing the impact of PI in health and social care research. The review aimed to identify and characterize the range of values associated with PI that are central elements of the framework.Methods: We undertook a review and narrative synthesis of diverse literatures of PI in health and social care research, including twenty existing reviews and twenty‐four chapters in sixteen textbooks.Results: Three overarching value systems were identified, each containing five value clusters. (i) A system concerned with ethical and/or political issues including value clusters associated with empowerment; change/action; accountability/transparency; rights; and ethics (normative values). (ii). A system concerned with the consequences of public involvement in research including value clusters associated with effectiveness; quality/relevance; validity/reliability; representativeness/objectivity/generalizability; and evidence (substantive values). (iii) A system concerned with the conduct of public involvement in including value clusters associated with Partnership/equality; respect/trust; openness and honesty; independence; and clarity (process values).Conclusion: Our review identified three systems associated with PI in health and social care research focused on normative, substantive and process values. The findings suggest that research teams should consider and make explicit the values they attach to PI in research and discuss ways in which potential tensions may be managed in order to maximize the benefits of PI for researchers, lay experts and the research.

Background: Researchers are currently investigating the feasibility, acceptability, and efficacy of digital health interventions for people who experience severe mental health problems such as psychosis and bipolar disorder. Although the acceptability of digital health interventions for severe mental health problems appears to be relatively high and some people report successfully using the Internet and mobile phones to manage their mental health, the attitudes of mental health care staff toward such approaches have yet to be considered. Objective: The aim of this study was to explore mental health care staff experiences of clients with severe mental health problems engaging with the Internet and mobile phones to self-manage their mental health and their views toward these behaviors. The study also sought to examine the opinions expressed by mental health care staff toward digital health interventions for severe mental health problems to identify potential facilitators and barriers to implementation. Methods: Four focus groups were conducted with 20 staff working in mental health care services in the North West of the England using a topic guide. Focus groups involved 12 staff working in secondary care psychological services (7 participants in focus group 1 and 5 participants in focus group 4), 4 staff working in a rehabilitation unit (focus group 2), and 4 staff working in a community mental health team (focus group 3). Focus groups were transcribed verbatim, and transcripts were analyzed thematically to identify key themes that emerged from the data. Results: Four overarching themes, two with associated subthemes, were identified: (1) staff have conflicting views about the pros and cons of using Web-based resources and digital health interventions to manage mental health; (2) digital health interventions could increase access to mental health support options for severe mental health problems but may perpetuate the digital divide; (3) digital health interventions’ impact on staff roles and responsibilities; and (4) digital health interventions should be used to enhance, not replace, face-to-face support. Conclusions: This study is the first, to our knowledge, to qualitatively explore the experiences and attitudes of mental health care staff toward individuals with severe mental health problems using the Internet, mobile phones, and digital health interventions to self-manage their mental health. Understanding the positive and negative experiences and views shared by staff toward both current and potential digital health intervention use has enabled the identification of several considerations for implementation. Additionally, the findings suggest mental health care staff need clear guidance and training in relation to their responsibilities in recommending reputable and secure websites, forums, and digital health interventions and in how to manage professional boundaries on the Internet. Overall, the study highlights that digital health interventions could be well received by staff working in mental health services but importantly, such management options must be presented to frontline staff as an avenue to enhance care and extend choice, rather than as a method to reduce costs.

Relatives play a key role in supporting people with psychosis at all stages of recovery, but this can be associated with high levels of distress. Family interventions, with an international evidence base, improve outcomes for service users but little is known about their impact on relatives' outcomes. This review of published evaluations aimed to assess whether family interventions are effective in improving outcomes for relatives of people with psychosis, to identify the key components of effective intervention packages, and to identify methodological limitations to be addressed in future research. Fifty studies were identified which evaluated an intervention to support relatives against a control group, and in which outcomes for the relatives were reported. Thirty (60%) studies showed a statistically significant positive impact of the intervention on at least one relatives' outcome category. Eleven key intervention components were identified across all 50 studies, but there was no evidence that the presence or absence of any of these key components reliably distinguished effective from ineffective interventions. Methodological quality of studies was generally poor with only 11 studies rated as adequate using the Clinical Trial Assessment Measure (CTAM). Recommendations to improve future research include larger samples; better defined interventions and controls; true randomisation and blind assessors; clearly specified primary outcomes; pre-published analysis plans that account appropriately for missing data and clustering of data; a consensus on the most relevant outcomes to assess and valid and reliable measures to do so. Alternative research designs need to be considered to evaluate more recent approaches which focus on family support, personalised to meet individual need, and offered as an integral part of complex clinical services.