scholarly journals Recorded Mental Health Recovery Narratives as a Resource for People Affected by Mental Health Problems: Development of the Narrative Experiences Online (NEON) Intervention

10.2196/24417 ◽  
2021 ◽  
Vol 5 (5) ◽  
pp. e24417
Author(s):  
Mike Slade ◽  
Stefan Rennick-Egglestone ◽  
Joy Llewellyn-Beardsley ◽  
Caroline Yeo ◽  
James Roe ◽  
...  
Keyword(s):  
Mental Health ◽  
Lived Experience ◽  
Digital Health ◽  
Health Interventions ◽  
Advisory Panel ◽  
Service Users ◽  
Impact Model ◽  
Harm Minimization ◽  
Web Based ◽  
Recovery Narratives

Background The internet enables sharing of narratives about health concerns on a substantial scale, and some digital health narratives have been integrated into digital health interventions. Narratives describing recovery from health problems are a focus of research, including those presented in recorded (eg, invariant) form. No clinical trial has been conducted on a web-based intervention providing access to a collection of Recorded Recovery Narratives (RRNs). Objective This study presents knowledge produced through the development of the Narrative Experiences Online (NEON) Intervention, a web-based intervention incorporating the algorithmic recommendation of RRNs. Methods Knowledge was gathered through knowledge integration (KI) activities. KI1 synthesized previous studies to produce the NEON Impact Model describing how accessing RRNs produces health-related outcomes. KI2 developed curation principles for the NEON Collection of RRNs through consultation with the NEON Lived Experience Advisory Panel and the curation of a preliminary collection. KI3 identified harm minimization strategies for the NEON Intervention through consultation with the NEON International Advisory Board and Lived Experience Advisory Panel. The NEON Intervention was finalized through 2 research studies (RS). In RS1, mental health service users (N=40) rated the immediate impact of randomly presented narratives to validate narrative feedback questions used to inform the recommendation algorithm. In RS2, mental health service users (n=25) were interviewed about their immediate response to a prototype of the NEON Intervention and trial procedures and then were interviewed again after 1 month of use. The usability and acceptability of the prototype and trial procedures were evaluated and refinements were made. Results KI1 produced the NEON Impact Model, which identifies moderators (recipient and context), mechanisms of connection (reflection, comparison, learning, and empathy), processes (identification of change from narrative structure or content and internalization of observed change), and outcomes (helpful and unhelpful). KI2 identified 22 curation principles, including a mission to build a large, heterogeneous collection to maximize opportunities for connection. KI3 identified seven harm minimization strategies, including content warnings, proactive and reactive blocking of narratives, and providing resources for the self-management of emotional distress. RS1 found variation in the impact of narratives on different participants, indicating that participant-level feedback on individual narratives is needed to inform a recommender system. The order of presentation did not predict narrative feedback. RS2 identified amendments to web-based trial procedures and the NEON Intervention. Participants accessed some narratives multiple times, use reduced over the 4-week period, and narrative feedback was provided for 31.8% (105/330) of narrative accesses. Conclusions RRNs can be integrated into web-based interventions. Evaluating the NEON Intervention in a clinical trial is feasible. The mixed methods design for developing the NEON Intervention can guide its extension to other clinical populations, the design of other web-based mental health interventions, and the development of narrative-based interventions in mental health.

scholarly journals Recorded Mental Health Recovery Narratives as a Resource for People Affected by Mental Health Problems: Development of the Narrative Experiences Online (NEON) Intervention (Preprint)

2020 ◽  
Author(s):  
Mike Slade ◽  
Stefan Rennick-Egglestone ◽  
Joy Llewellyn-Beardsley ◽  
Caroline Yeo ◽  
James Roe ◽  
...  
Keyword(s):  
Mental Health ◽  
Lived Experience ◽  
Digital Health ◽  
Health Interventions ◽  
Advisory Panel ◽  
Service Users ◽  
Impact Model ◽  
Harm Minimization ◽  
Web Based ◽  
Recovery Narratives

BACKGROUND The internet enables sharing of narratives about health concerns on a substantial scale, and some digital health narratives have been integrated into digital health interventions. Narratives describing <i>recovery</i> from health problems are a focus of research, including those presented in <i>recorded</i> (eg, invariant) form. No clinical trial has been conducted on a web-based intervention providing access to a collection of Recorded Recovery Narratives (RRNs). OBJECTIVE This study presents knowledge produced through the development of the Narrative Experiences Online (NEON) Intervention, a web-based intervention incorporating the algorithmic recommendation of RRNs. METHODS Knowledge was gathered through knowledge integration (KI) activities. KI1 synthesized previous studies to produce the NEON Impact Model describing how accessing RRNs produces health-related outcomes. KI2 developed curation principles for the NEON Collection of RRNs through consultation with the NEON Lived Experience Advisory Panel and the curation of a preliminary collection. KI3 identified harm minimization strategies for the NEON Intervention through consultation with the NEON International Advisory Board and Lived Experience Advisory Panel. The NEON Intervention was finalized through 2 research studies (RS). In RS1, mental health service users (N=40) rated the immediate impact of randomly presented narratives to validate narrative feedback questions used to inform the recommendation algorithm. In RS2, mental health service users (n=25) were interviewed about their immediate response to a prototype of the NEON Intervention and trial procedures and then were interviewed again after 1 month of use. The usability and acceptability of the prototype and trial procedures were evaluated and refinements were made. RESULTS KI1 produced the NEON Impact Model, which identifies moderators (recipient and context), mechanisms of connection (reflection, comparison, learning, and empathy), processes (identification of change from narrative structure or content and internalization of observed change), and outcomes (helpful and unhelpful). KI2 identified 22 curation principles, including a mission to build a large, heterogeneous collection to maximize opportunities for connection. KI3 identified seven harm minimization strategies, including content warnings, proactive and reactive blocking of narratives, and providing resources for the self-management of emotional distress. RS1 found variation in the impact of narratives on different participants, indicating that participant-level feedback on individual narratives is needed to inform a recommender system. The order of presentation did not predict narrative feedback. RS2 identified amendments to web-based trial procedures and the NEON Intervention. Participants accessed some narratives multiple times, use reduced over the 4-week period, and narrative feedback was provided for 31.8% (105/330) of narrative accesses. CONCLUSIONS RRNs can be integrated into web-based interventions. Evaluating the NEON Intervention in a clinical trial is feasible. The mixed methods design for developing the NEON Intervention can guide its extension to other clinical populations, the design of other web-based mental health interventions, and the development of narrative-based interventions in mental health.

scholarly journals Digital health interventions for the management of mental health in people with chronic diseases: a rapid review

BMJ Open ◽  
2021 ◽  
Vol 11 (4) ◽  
pp. e044437
Author(s):  
Maxime Sasseville ◽  
Annie LeBlanc ◽  
Mylène Boucher ◽  
Michèle Dugas ◽  
Gisele Mbemba ◽  
...  
Keyword(s):  
Mental Health ◽  
Chronic Disease ◽  
Mental Health Problems ◽  
Digital Health ◽  
Health Interventions ◽  
Children And Youth ◽  
Rapid Review ◽  
Web Based ◽  
Manage Mental ◽  
Manage Mental Health

ObjectiveDetermine the effectiveness of digital mental health interventions for individuals with a concomitant chronic disease.DesignWe conducted a rapid review of systematic reviews. Two reviewers independently conducted study selection and risk of bias evaluation. A standardised extraction form was used. Data are reported narratively.InterventionsWe included systematic reviews of digital health interventions aiming to prevent, detect or manage mental health problems in individuals with a pre-existing chronic disease, including chronic mental health illnesses, published in 2010 or after.Main outcome measureReports on mental health outcomes (eg, anxiety symptoms and depression symptoms).ResultsWe included 35 reviews, totalling 702 primary studies with a total sample of 50 692 participants. We structured the results in four population clusters: (1) chronic diseases, (2) cancer, (3) mental health and (4) children and youth. For populations presenting a chronic disease or cancer, health provider directed digital interventions (eg, web-based consultation, internet cognitive–behavioural therapy) are effective and safe. Further analyses are required in order to provide stronger recommendations regarding relevance for specific population (such as children and youth). Web-based interventions and email were the modes of administration that had the most reports of improvement. Virtual reality, smartphone applications and patient portal had limited reports of improvement.ConclusionsDigital technologies could be used to prevent and manage mental health problems in people living with chronic conditions, with consideration for the age group and type of technology used.

scholarly journals Assessing Therapeutic Alliance in the Context of mHealth Interventions for Mental Health Problems: Development of the Mobile Agnew Relationship Measure (mARM) Questionnaire (Preprint)

2017 ◽  
Author(s):  
Katherine Berry ◽  
Amy Salter ◽  
Rohan Morris ◽  
Susannah James ◽  
Sandra Bucci
Keyword(s):  
Mental Health ◽  
Therapeutic Alliance ◽  
Digital Health ◽  
Health Intervention ◽  
Health Interventions ◽  
Health Staff ◽  
Service Users ◽  
Face To Face ◽  
Mental Health Interventions ◽  
Stage 1

BACKGROUND Digital health interventions in the form of smartphone apps aim to improve mental health and enable people access to support as and when needed without having to face the stigma they may experience in accessing services. If we are to evaluate mobile health (mHealth) apps and advance scientific understanding, we also need tools to help us understand in what ways mHealth interventions are effective or not. The concept of therapeutic alliance, a measure of the quality of the relationship between a health care provider and a service user, is a key factor in explaining the effects of mental health interventions. The Agnew Relationship Measure (ARM) is a well-validated measure of therapeutic alliance in face-to-face therapy. OBJECTIVE This study presented the first attempt to (1) explore service users’ views of the concept of relationship within mHealth mental health interventions and (2) adapt a well-validated face-to-face measure of therapeutic alliance, the Agnew Relationship Measure (ARM), for use with mHealth interventions. METHODS In stage 1, we interviewed 9 mental health service users about the concept of therapeutic alliance in the context of a digital health intervention and derived key themes from interview transcripts using thematic analysis. In stage 2, we used rating scales and open-ended questions to elicit views from 14 service users and 10 mental health staff about the content and face validity of the scale, which replaced the word “therapist” with the word “app.” In stage 3, we used the findings from stages 1 and 2 to adapt the measure with the support of a decision-making algorithm about which items to drop, retain, or adapt. RESULTS Findings suggested that service users do identify relationship concepts when thinking about mHealth interventions, including forming a bond with an app and the ability to be open with an app. However, there were key differences between relationships with health professionals and relationships with apps. For example, apps were not as tailored and responsive to each person’s unique needs. Furthermore, apps were not capable of portraying uniquely human-like qualities such as friendliness, collaboration, and agreement. We made a number of changes to the ARM that included revising 16 items; removing 4 items due to lack of suitable alternatives; and adding 1 item to capture a key theme derived from stage 1 of the study (“The app is like having a member of my care team in my pocket”). CONCLUSIONS This study introduces the mHealth version of the ARM, the mARM, that has good face and content validity. We encourage researchers to include this easy-to-use tool in digital health intervention studies to gather further data about its psychometric properties and advance our understanding of how therapeutic alliance influences the efficacy of mHealth interventions. CLINICALTRIAL International Standard Randomized Controlled Trial Number (ISRCTN) 34966555; http://www.isrctn.com/ISRCTN34966555 (Archived by WebCite at http://www.webcitation.org/6ymBVwKif)

An engagement-facilitation intervention (EFI) for increasing uptake and engagement for self-guided online mental health interventions: Consumer-guided development (Preprint)

2019 ◽  
Author(s):  
Amelia Gulliver ◽  
Alison L Calear ◽  
Matthew Sunderland ◽  
Frances Kay-Lambkin ◽  
Louise M Farrer ◽  
...  
Keyword(s):  
Mental Health ◽  
Lived Experience ◽  
Health Program ◽  
Mental Health Program ◽  
Health Interventions ◽  
Barriers And Facilitators ◽  
Health Programs ◽  
Current Evidence ◽  
Mental Health Interventions ◽  
Mental Health Programs

BACKGROUND Self-guided online mental health programs are effective in treating and preventing mental health problems. However, both the uptake and engagement with these programs in the community is suboptimal, and there is limited current evidence indicating how to increase the use of existing evidence-based programs. OBJECTIVE The current study aims to investigate the views of people with lived experience of depression and anxiety on the barriers and facilitators to using e-mental health interventions and to use these perspectives to help develop an engagement-facilitation intervention (EFI) to increase uptake and engagement with self-guided online mental health programs. METHODS A total of 24 community members (female = 21; male = 3) with lived experience of depression and/or anxiety participated in four focus groups that discussed: 1) barriers and facilitators to self-guided e-mental health programs, 2) specific details needed to help them decide to use an online program, and 3) the appearance, delivery mode, and functionality of content for the proposed EFI. A total of 14 of the focus group attendees participated in a subsequent follow-up survey to evaluate the resultant draft EFI. Data were thematically analysed using both inductive and deductive methods. RESULTS Participants suggested that the critical component of an EFI was information that would challenge personal barriers to engagement with psychosocial interventions. These were providing personalised feedback about symptoms, information about the content and effectiveness of the e-mental health program, normalisation of participation in e-mental health programs including testimonials, and brief information on data security. Reminders, rewards, feedback about their progress, and coaching were all mentioned as being useful in assisting people to continue to engage with a program once they had started. Feedback on the developed EFI was positive; with participants reporting satisfaction with the content of the EFI and that it would likely positively affect their use of an e-mental health program. CONCLUSIONS EFIs have the potential to improve the uptake of e-mental health programs in the community and should focus on providing information on the content and effectiveness of e-mental health programs, as well as normalising their use. There is strong value in involving people with a lived experience in the design and development of EFIs to maximise their effectiveness.

Is co-production working well in recovery colleges? Emergent themes from a systematic narrative review

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Karen Louise Bester ◽  
Anne McGlade ◽  
Eithne Darragh
Keyword(s):  
Mental Health ◽  
Lived Experience ◽  
Social Care ◽  
The Body ◽  
Bibliographic Databases ◽  
Service Users ◽  
Content Type ◽  
Practitioner Attitudes ◽  
Health And Social Care ◽  
The Impact

Purpose “Co-production” is a process in health and social care wherein service users and practitioners work in partnership. Recovery colleges (RCs) are educational establishments offering mental health education; a cornerstone feature is that courses are designed and delivered in parity by both mental health practitioners and “peers” – people with lived experience of mental illness. This paper aims to consider, through the identification of key themes, whether co-production within RCs is operating successfully. Design/methodology/approach The paper is a systematic review of qualitative literature. Relevant concept groups were systematically searched using three bibliographic databases: Medline, Social Care Online and Scopus. Articles were quality appraised and then synthesised through inductive thematic analysis and emergent trends identified. Findings Synthesis identified three key themes relating to the impact of co-production in RCs: practitioner attitudes, power dynamics between practitioners and service users, and RCs’ relationships with their host organisations. As a result of RC engagement, traditional practitioner/patient hierarchies were found to be eroding. Practitioners felt they were more person-centred. RCs can model good co-productive practices to their host organisations. The review concluded, with some caveats, that RC co-production was of high fidelity. Originality/value RC research is growing, but the body of evidence remains relatively small. Most of what exists examine the impact of RCs on individuals’ overall recovery and mental health; there is a limited empirical investigation into whether their flagship feature of parity between peers and practitioners is genuine.

scholarly journals Usability guidelines for developing and evaluating web-based mental health interventions: Establishing a practical framework

2019 ◽  
Author(s):  
Gustav Petersen ◽  
Jakob Hyldig Nielsen ◽  
Johannes Verner Olsen ◽  
Robin Niels Kok
Keyword(s):  
Mental Health ◽  
Evaluation Method ◽  
Health Anxiety ◽  
Health Interventions ◽  
Heuristic Evaluation ◽  
Web Based ◽  
Usability Assessment ◽  
E Learning ◽  
Mental Health Interventions ◽  
The Relationship

Background: Even though problems with usability constitute a major challenge to the implementation of new eHealth technology, the field web-based interventions is lacking usability guidelines for development and evaluation of web-based intervention platforms. Objective: The aim of present study is to create a set of eHealth-specific usability guidelines for the development and evaluation of web-based mental health interventions. Methods: Knowledge about usability was gathered from peripheral fields of e-learning, emotional design, and human-computer interaction in a top-down approach. This knowledge was synthesized into usability guidelines for web-based interventions, which were then case-tested on an existing web-based intervention for patients with health anxiety, using the heuristic evaluation method. Results: Nine broad guidelines were developed. The subsequent case-test of the web-based intervention showed that application of the guidelines was feasible and was able to identify several important usability issues with the intervention. Conclusions: Health professionals should be included in intervention design. Future usability assessment should focus on the different usability attributes. The relationship between usability and adherence needs further investigation.

scholarly journals The Acceptability and Usability of Digital Health Interventions for Adults With Depression, Anxiety, and Somatoform Disorders: Qualitative Systematic Review and Meta-Synthesis

10.2196/16228 ◽  
2020 ◽  
Vol 22 (7) ◽  
pp. e16228 ◽  
Author(s):  
Shireen Patel ◽  
Athfah Akhtar ◽  
Sam Malins ◽  
Nicola Wright ◽  
Emma Rowley ◽  
...  
Keyword(s):  
Mental Health ◽  
Systematic Review ◽  
Somatoform Disorders ◽  
Digital Health ◽  
Health Interventions ◽  
Health Conditions ◽  
Future Research ◽  
World Population ◽  
Personal Support ◽  
The Individual

Background The prevalence of mental health disorders continues to rise, with almost 4% of the world population having an anxiety disorder and almost 3.5% having depression in 2017. Despite the high prevalence, only one-third of people with depression or anxiety receive treatment. Over the last decade, the use of digital health interventions (DHIs) has risen rapidly as a means of accessing mental health care and continues to increase. Although there is evidence supporting the effectiveness of DHIs for the treatment of mental health conditions, little is known about what aspects are valued by users and how they might be improved. Objective This systematic review aimed to identify, appraise, and synthesize the qualitative literature available on service users’ views and experiences regarding the acceptability and usability of DHIs for depression, anxiety, and somatoform disorders. Methods A systematic search strategy was developed, and searches were run in 7 electronic databases. Qualitative and mixed methods studies published in English were included. A meta-synthesis was used to interpret and synthesize the findings from the included studies. Results A total of 24 studies were included in the meta-synthesis, and 3 key themes emerged with descriptive subthemes. The 3 key themes were initial motivations and approaches to DHIs, personalization of treatment, and the value of receiving personal support in DHIs. The meta-synthesis suggests that participants’ initial beliefs about DHIs can have an important effect on their engagement with these types of interventions. Personal support was valued very highly as a major component of the success of DHIs. The main reason for this was the way it enabled individual personalization of care. Conclusions Findings from the systematic review have implications for the design of future DHIs to improve uptake, retention, and outcomes in DHIs for depression, anxiety, and somatoform disorders. DHIs need to be personalized to the specific needs of the individual. Future research should explore whether the findings could be generalized to other health conditions.

Refugee and asylum seekers’ experiences

2021 ◽  
pp. 281-290
Author(s):  
Rachel Tribe ◽  
Angelina Jalonen
Keyword(s):  
Mental Health ◽  
Coping Strategies ◽  
Lived Experience ◽  
Case Studies ◽  
Asylum Seekers ◽  
Meaning Making ◽  
Service Users ◽  
And Coping ◽  
Refugees And Asylum Seekers ◽  
Asylum Seekers And Refugees

This chapter reviews the socio-political environment and legal factors that provide the context and influence the lived experience of many refugees and asylum seekers. These factors are considered in relation to flight, arrival, and settlement in a new country. How these contextual factors may impact upon refugees and asylum seekers, their sense of identity, and mental health will be reviewed. The chapter reflects upon the possible challenges faced by many refugees and asylum seekers, as well as arguing that the strengths, resilience, and coping strategies that many asylum seekers and refugees exhibit need to be adequately considered by clinicians, if a meaningful service is to be provided. The importance of clinicians being culturally curious and listening to service users’ meaning-making is vital. An overview of some other issues that clinicians may need to consider is provided. The chapter contains a number of case studies to illustrate the related issues.

Health in a connected world

2020 ◽  
pp. 573-580
Author(s):  
Philippe Delespaul ◽  
Catherine van Zelst
Keyword(s):  
Mental Health ◽  
Virtual Reality ◽  
Lived Experience ◽  
Therapeutic Relationship ◽  
Social Relationships ◽  
Daily Life ◽  
Mental Healthcare ◽  
Well Being ◽  
Service Users ◽  
Changing World

This chapter is about a redesign of mental healthcare, as it evolves in a changing world. It focuses on digital transformations and their impact on social relationships, networks, and communities. It intends to demonstrate better responses to the needs of service users in society. It first defines terminologies to access the changing world and focus on how to understand health, recovery, and well-being in people with lived experience of psychosis. These central elements can be accessed or maintained using eHealth, including mHealth, virtual reality, and eCommunities. It also discuss strengths, challenges, and pitfalls in developing and applying innovative interventions in the context of daily life. It reviews these trends and how these relate to the therapeutic relationship in general, and the mental health practitioner’s role in particular.

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