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Recovery From Severe Mental Health Problems: A Systematic Review of Service User and Informal Caregiver Perspectives.

ABSTRACT: Introduction: The recovery approach aims to have users' perspectives at the heart of service development and research; it is a holistic perspective that considers social needs, personal growth and inclusion. In the last decade recovery-oriented research and practice has increased greatly, however, a comprehensive model of recovery considering exclusively the perspectives of people with lived experience has not been devised. Aims: This review aimed to develop a framework and contextualize service users' and informal caregivers' understanding of recovery from severe mental health problems. Methods: We systematically searched 6 databases including key terms related to knowledge, experience and narratives AND mental health AND personal recovery. The search was supplemented with reference sourcing through gray literature, reference tracking and expert consultation. Data analysis consisted of a qualitative meta-synthesis using constant comparative methods. Results: Sixty-two studies were analyzed. A pattern emerged regarding the recovery paradigms that the studies used to frame their findings. The resulting recovery framework included the domains Social recovery; Prosperity (Legal, political, and economic recovery); Individual Recovery; and Clinical Recovery Experience (SPICE). Service users' definitions of recovery tended to prioritize social aspects, particularly being accepted and connecting with others, while caregivers focused instead on clinical definitions of recovery such as symptom remission. Both groups emphasized individual aspects such as becoming self-sufficient and achieving personal goals, which was strongly linked with having economic means for independence. Conclusions: The recovery model provided by this review offers a template for further research in the field and a guide for policy and practice. Predominant definitions of recovery currently reflect understandings of mental health which focus on an individual perspective, while this review found an important emphasis on socio-political aspects. At the same time, only a small number of studies took place in low-income countries, focused on minoritized populations, or included caregivers' perspectives. These are important gaps in the literature that require further attention. Systematic Review Registration: The review protocol was registered on PROSPERO (CRD42017076450); https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=76450.

SUBMITTER: Vera San Juan N

PROVIDER: S-EPMC8440827 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:BackgroundThere is international recognition of the need for service user and caregiver involvement in mental health system strengthening. However, little is known about how best to integrate this approach into the mental healthcare system; what works to advance involvement, under what conditions, how and when does involvement bring added value, and how can it work in resource-poor settings in low and middle-income countries.ObjectiveTo describe the methodology for a realist systematic review protocol to synthesise the evidence to explain the contexts, outcomes, and underlying mechanisms for involvement of service users with severe mental health problems and their caregivers in mental healthcare policy-making and planning, advocacy, service development, monitoring and improvement.Methods/designsThe proposed realist systematic review will involve five steps: (i) clarifying the review scope, (ii) a systematic search for evidence, (iii) evidence appraisal and data extraction, (iv) data analysis, (v) synthesis of evidence and formation of revised programme theory. Inputs from a formative qualitative study, consultative Theory of Change meetings with key stakeholder groups, and scoping reviews will be used to identify candidate theory/theories that will guide the selection, appraisal and analysis of studies, and refine the Theory of Change model that will be piloted and evaluated. Synthesis of data will be undertaken using realist logic, constant comparison and thematic analysis. In a consultative meeting with stakeholders the Theory of Change model will then be situated with respect to relevant programme theories and adapted to incorporate the synthesized evidence of relevance to the local context. The finalized Theory of Change model will be piloted and evaluated in a primary health care setting in rural Ethiopia.DiscussionRealist review methodology has not been applied to the area of mental health service user involvement in low- and middle-income country settings. In this protocol, we describe how this contextualized approach will be applied to identify and refine a theory-driven and transferable model of involvement of service users, embedded in ongoing work in Ethiopia.Systematic review registration PROSPERO CRD42018084595.

Project description:BackgroundRemote measurement technologies (RMT) such as mobile health devices and apps are increasingly used by those living with chronic neurological and mental health conditions. RMT enables real-world data collection and regular feedback, providing users with insights about their own conditions. Data visualizations are an integral part of RMT, although little is known about visualization design preferences from the perspectives of those living with chronic conditions.ObjectiveThe aim of this review was to explore the experiences and preferences of individuals with chronic neurological and mental health conditions on data visualizations derived from RMT to manage health.MethodsIn this systematic review, we searched peer-reviewed literature and conference proceedings (PubMed, IEEE Xplore, EMBASE, Web of Science, Association for Computing Machinery Computer-Human Interface proceedings, and the Cochrane Library) for original papers published between January 2007 and September 2021 that reported perspectives on data visualization of people living with chronic neurological and mental health conditions. Two reviewers independently screened each abstract and full-text article, with disagreements resolved through discussion. Studies were critically appraised, and extracted data underwent thematic synthesis.ResultsWe identified 35 eligible publications from 31 studies representing 12 conditions. Coded data coalesced into 3 themes: desire for data visualization, impact of visualizations on condition management, and visualization design considerations. Data visualizations were viewed as an integral part of users' experiences with RMT, impacting satisfaction and engagement. However, user preferences were diverse and often conflicting both between and within conditions.ConclusionsWhen used effectively, data visualizations are valuable, engaging components of RMT. They can provide structure and insight, allowing individuals to manage their own health more effectively. However, visualizations are not "one-size-fits-all," and it is important to engage with potential users during visualization design to understand when, how, and with whom the visualizations will be used to manage health.

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Recovery From Severe Mental Health Problems: A Systematic Review of Service User and Informal Caregiver Perspectives.

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