Dataset Information

Recovery After Psychosis: Qualitative Study of Service User Experiences of Lived Experience Videos on a Recovery-Oriented Website.

ABSTRACT: BACKGROUND:Digital interventions offer an innovative way to make the experiences of people living with mental illness available to others. As part of the Self-Management And Recovery Technology (SMART) research program on the use of digital resources in mental health services, an interactive website was developed including videos of people with lived experience of mental illness discussing their recovery. These peer videos were designed to be watched on a tablet device with a mental health worker, or independently. OBJECTIVE:Our aim was to explore how service users experienced viewing the lived experience videos on this interactive website, as well as its influence on their recovery journey. METHODS:In total, 36 service users with experience of using the website participated in individual semistructured qualitative interviews. All participants had experience of psychosis. Data analysis occurred alongside data collection, following principles of constructivist grounded theory methodology. RESULTS:According to participants, engaging with lived experience videos was a pivotal experience of using the website. Participants engaged with peers through choosing and watching the videos and reflecting on their own experience in discussions that opened up with a mental health worker. Benefits of seeing others talking about their experience included "being inspired," "knowing I'm not alone," and "believing recovery is possible." Experiences of watching the videos were influenced by the participants' intrapersonal context, particularly their ways of coping with life and use of technology. The interpersonal context of watching the videos with a worker, who guided website use and facilitated reflection, enriched the experience. CONCLUSIONS:Engaging with lived experience videos was powerful for participants, contributing to their feeling connected and hopeful. Making websites with lived experience video content available to service users and mental health workers demonstrates strong potential to support service users' recovery.

SUBMITTER: Williams A

PROVIDER: S-EPMC5964305 | biostudies-literature | 2018 May

REPOSITORIES: biostudies-literature

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Recovery After Psychosis: Qualitative Study of Service User Experiences of Lived Experience Videos on a Recovery-Oriented Website.

Williams Anne A Fossey Ellie E Farhall John J Foley Fiona F Thomas Neil N

JMIR mental health 20180508 2

<h4>Background</h4>Digital interventions offer an innovative way to make the experiences of people living with mental illness available to others. As part of the Self-Management And Recovery Technology (SMART) research program on the use of digital resources in mental health services, an interactive website was developed including videos of people with lived experience of mental illness discussing their recovery. These peer videos were designed to be watched on a tablet device with a mental heal ...[more]

PMID: 29739737

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Project description:BackgroundLong duration of untreated psychosis (DUP) is associated with poor outcomes and low quality of life at first contact with mental health services. However, long DUP is common. In order to inform initiatives to reduce DUP, we investigated service users' and carers' experiences of the onset of psychosis and help-seeking in two multicultural, inner London boroughs and the roles of participants' social networks in their pathways to care.MethodIn-depth interviews were conducted with service users and carers from an early intervention service in North London, purposively sampled to achieve diversity in sociodemographic characteristics and DUP and to include service users in contact with community organisations during illness onset. Interviews covered respondents' understanding of and reaction to the onset of psychosis, their help-seeking attempts and the reactions of social networks and health services. Thematic analysis of interview transcripts was conducted.ResultsMultiple barriers to prompt treatment included not attributing problems to psychosis, worries about the stigma of mental illness and service contact, not knowing where to get help and unhelpful service responses. Help was often not sought until crisis point, despite considerable prior distress. The person experiencing symptoms was often the last to recognise them as mental illness. In an urban UK setting, where involved, workers in non-health community organisations were frequently willing to assist help-seeking but often lacked skills, time or knowledge to do so.ConclusionEven modest periods of untreated psychosis cause distress and disruption to individuals and their families. Early intervention services should prioritise early detection. Initiatives aimed at reducing DUP may succeed not by promoting swift service response alone, but also by targeting delays in initial help-seeking. Our study suggests that strategies for doing this may include addressing the stigma associated with psychosis and community education regarding symptoms and services, targeting not only young people developing illness but also a range of people in their networks, including staff in educational and community organisations. Initiatives to enhance the effective involvement of staff in community organisations working with young people in promoting help-seeking merit research.

Project description:BackgroundThe period of regular contractions before 4 cm of cervical dilatation is often referred to as the latent phase or early labor. Women find it challenging to prepare for and cope with this phase of labor, and easily accessed web-based information from reliable sources may be useful in this preparation.ObjectiveThe aim of this study is to describe the development of a Norwegian website, Latens.no, for people seeking information on early labor and to explore users' experiences with the website to increase its user-friendliness.MethodsWe developed a website using an iterative process involving a multidisciplinary research team, health personnel, users, a graphic designer, and an expert in software development. We explored the website's user-friendliness using semistructured individual interviews and the think-aloud method. All interviews were audio recorded and transcribed. We then analyzed the participants' feedback on the website.ResultsParticipants included women who had recently given birth to their first baby (n=2), women who were pregnant with their first baby (n=4), and their partners (n=2). Results from participants' experiences completing tasks included positive feedback related to the content of Latens.no, positive feedback related to the website's design, and suggestions for improvement. Participants wanted to find information on early labor on the internet. Moreover, they found the information on the website relevant, trustworthy, and easy to read, and the design was attractive and easy to use. Overall, the participants performed the tasks easily, with few clicks and minimal effort.ConclusionsThe think-aloud method, while performing tasks, allowed for detailed feedback. The participants confirmed the user-friendliness of the website but at the same time provided information enabling improvement. We expect that changes made based on this user-centered design study will further increase the usability and acceptability of Latens.no.

Project description:BACKGROUND: Asthma is one of the most prevalent chronic conditions in the United States, yet despite the existence of national guidelines, nearly three fourths of patients with asthma do not have adequate control and clinical adherence to guidelines is low. While there are many reasons for this, physician inertia with respect to treatment change is partly to blame. Research suggests that patients who ask for specific tests and treatments are more likely to receive them. OBJECTIVES: This study investigated the impact and experience of using an interactive patient website designed to give patients individual feedback about their condition and to suggest tailored questions for patients to ask their physician. The website was designed to be used prior to a physician visit, to increase the likelihood that patients would receive recommended tests and treatments. METHODS: A total of 37 adult patients with asthma participated in semi-structured telephone interviews aimed at eliciting information about their experiences with the website. Transcripts were coded using qualitative data analysis techniques and software. Themes were developed from subsets of codes generated through the analysis. In addition, 26 physicians were surveyed regarding their impressions of the website. RESULTS: Opportunities exist for improving website feedback, although the majority of both patient and physician respondents held favorable opinions about the site. Two major themes emerged regarding patients' experiences with the website. First, many patients who used the website had a positive shift in their attitudes regarding interactions with their physicians. Second, use of the website prompted patients to become more actively involved in their asthma care. No patient reported any negative experiences as a result of using the website. Physicians rated the website positively. CONCLUSIONS: Patients perceived that the interactive website intervention improved communication and interaction with their physicians, suggesting that patients can play a role in overcoming the clinical inertia of providers. Although the design and content of the website can be improved upon, the main findings suggest that use of the website is well accepted and is perceived to improve the quality of care that patients receive.

Project description:BackgroundCollections of lived experience narratives are increasingly used in health research and medical practice. However, there is limited research with respect to the decision-making processes involved in curating narrative collections and the work that curators do as they build and publish collections.ObjectiveThis study aims to develop a typology of curatorial decisions involved in curating narrative collections presenting lived experiences of mental health service use, recovery, or madness and to document approaches selected by curators in relation to identified curatorial decisions.MethodsA preliminary typology was developed by synthesizing the results of a systematic review with insights gained through an iterative consultation with an experienced curator of multiple recovery narrative collections. The preliminary typology informed the topic guide for semistructured interviews with a maximum variation sample of 30 curators from 7 different countries. All participants had the experience of curating narrative collections of the lived experiences of mental health service use, recovery, or madness. A multidisciplinary team conducted thematic analysis through constant comparison.ResultsThe final typology identified 6 themes, collectively referred to as VOICES, which stands for values and motivations, organization, inclusion and exclusion, control and collaboration, ethics and legal, and safety and well-being. A total of 26 subthemes related to curation decisions were identified.ConclusionsThe VOICES typology identifies the key decisions to consider when curating narrative collections about the lived experiences of mental health service use, recovery, or madness. It might be used as a theoretical basis for a good practice resource to support curators in their efforts to balance the challenges and sometimes conflicting imperatives involved in collecting, organizing, and sharing narratives. Future research might seek to document the use of such a tool by curators and hence examine how best to use VOICES to support decision making.

Project description:ObjectivesRecovery from anorexia nervosa (AN) is difficult to define, and efforts to establish recovery criteria have led to several versions being proposed. Using the perspectives of people with histories of AN and therapists working in the field, we sought to explore the face validity of Khalsa et al (2017) as one of the most recent examples of proposed systematic recovery criteria.DesignWe interviewed 11 health service users (SUs) with histories of AN who had previously received treatment alongside 8 eating disorder therapists (EDTs), exploring their views on the proposed AN recovery criteria.MethodsData from verbal and written interviews were analysed thematically. Separate thematic analyses of SU and EDT interviews highlighted where concerns converged and diverged across participants.ResultsBoth groups saw some merits of having universally recognized recovery criteria, and the multidimensional approach was welcomed, but EDTs were uncomfortable with considering their use in therapy and SUs felt key components were missing around emotional coping and life quality. SUs disliked the prominence of body mass index (BMI) in the criteria, and all struggled with the proposed duration for recovery. Conceptually, the notion of recovery as an endpoint rather than a journey was contested.ConclusionsOur findings indicate disparities between academically derived recovery criteria and lived experiences and indicate perceived challenges in using such criteria in therapeutic settings. Including SUs and EDTs in the development of criteria may improve the likelihood of consolidating AN recovery criteria, but conceptual challenges remain.Practitioner pointsAN recovery is complex, and the use of research-based AN recovery criteria in therapeutic settings could have a detrimental effect on SUs' outcomes. EDTs should be aware of efforts to define AN recovery criteria. EDTs should engage with debates on defining AN recovery and seek to promote participation in such debates to SUs.

Dataset Information

Recovery After Psychosis: Qualitative Study of Service User Experiences of Lived Experience Videos on a Recovery-Oriented Website.

Publications

Recovery After Psychosis: Qualitative Study of Service User Experiences of Lived Experience Videos on a Recovery-Oriented Website.

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