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The VOICES Typology of Curatorial Decisions in Narrative Collections of the Lived Experiences of Mental Health Service Use, Recovery, or Madness: Qualitative Study.

ABSTRACT: BACKGROUND:Collections 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. OBJECTIVE:This 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. METHODS:A 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. RESULTS:The 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. CONCLUSIONS:The 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.

SUBMITTER: Yeo C

PROVIDER: S-EPMC7532459 | biostudies-literature | 2020 Sep

REPOSITORIES: biostudies-literature

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The VOICES Typology of Curatorial Decisions in Narrative Collections of the Lived Experiences of Mental Health Service Use, Recovery, or Madness: Qualitative Study.

Yeo Caroline C Hare-Duke Laurie L Rennick-Egglestone Stefan S Bradstreet Simon S Callard Felicity F Hui Ada A Llewellyn-Beardsley Joy J Longden Eleanor E McDonough Tracy T McGranahan Rose R Ng Fiona F Pollock Kristian K Roe James J Slade Mike M

JMIR mental health 20200918 9

<h4>Background</h4>Collections 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.<h4>Objective</h4>This study aims to develop a typology of curatorial decisions involved in curating narrative collections presenting lived experiences of mental health service use, r ...[more]

PMID: 32945771

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Project description: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.

Project description:BackgroundMental health recovery narratives are first-person lived experience accounts of recovery from mental health problems, which refer to events or actions over a period. They are readily available either individually or in collections of recovery narratives published in books, health service booklets, or on the Web. Collections of recovery narratives have been used in a range of mental health interventions, and organizations or individuals who curate collections can therefore influence how mental health problems are seen and understood. No systematic review has been conducted of research into curatorial decision making.ObjectiveThis study aimed to produce a conceptual framework identifying and categorizing decisions made in the curation of mental health recovery narrative collections.MethodsA conceptual framework was produced through a systematic review and qualitative evidence synthesis. Research articles were identified through searching bibliographic databases (n=13), indexes of specific journals (n=3), and gray literature repositories (n=4). Informal documents presenting knowledge about curation were identified from editorial chapters of electronically available books (n=50), public documents provided by Web-based collections (n=50), and prefaces of health service booklets identified through expert consultation (n=3). Narrative summaries of included research articles were produced. A qualitative evidence synthesis was conducted on all included documents through an inductive thematic analysis. Subgroup analyses were conducted to identify differences in curatorial concerns between Web-based and printed collections.ResultsA total of 5410 documents were screened, and 23 documents were included. These comprised 1 research publication and 22 informal documents. Moreover, 9 higher level themes were identified, which considered: the intended purpose and audience of the collection; how to support safety of narrators, recipients, and third parties; the processes of collecting, selecting, organizing, and presenting recovery narratives; ethical and legal issues around collections; and the societal positioning of the collection. Web-based collections placed more emphasis on providing benefits for narrators and providing safety for recipients. Printed collections placed more emphasis on the ordering of narrative within printed material and the political context.ConclusionsOnly 1 research article was identified despite extensive searches, and hence this review has revealed a lack of peer-reviewed empirical research regarding the curation of recovery narrative collections. The conceptual framework can be used as a preliminary version of reporting guidelines for use when reporting on health care interventions that make use of narrative collections. It provides a theory base to inform the development of new narrative collections for use in complex mental health interventions. Collections can serve as a mechanism for supporting collective rather than individual discourses around mental health.

Project description:BackgroundIt is well established that Aboriginal and Torres Strait Islander populations face considerable health inequities, exacerbated by poorer healthcare quality. Patient experience is recognised as a major contributing factor to healthcare quality and outcomes, therefore, enriched knowledge of the patient experiences of Aboriginal and Torres Strait Islander populations is critical to redress health inequities. This review synthesises evidence of the healthcare experiences amongst Aboriginal and Torres Strait Islander patients through a metanarrative synthesis of qualitative literature.MethodsA systematic search strategy was developed and applied to six electronic databases between January 2000 and July 2019. Titles and abstracts were screened before applying the inclusion criteria to full text articles. A meta-narrative synthesis was undertaken.ResultsFifty-four publications were identified from four research traditions; each with a unique conceptualisation of patient experience. Three themes emerged that demonstrate Aboriginal and Torres Strait Islander patient experiences are informed by 1) beliefs about wellbeing and healthcare provision, 2) their level of trust in the healthcare system, and 3) individual and community health system interactions. The findings highlight a range of aspects of patient experience that were important to participating Aboriginal and Torres Strait Islanders in the included studies but not captured currently in health system surveys.ConclusionThis review highlights the influence of beliefs about health and wellbeing on the patient experience amongst Aboriginal and Torres Strait Islander populations in the Australian health system. Patient experiences were informed by past experience and their trust in the health system. The different factors influencing patient experience and the gravity of their influence must be considered in current approaches to capturing patient experience data collection methods.Trial registrationPROSPERO (ID: CRD42019134765 ).

Project description:BackgroundThe fourth section of the 1967 Abortion Act states that individuals (including health care practitioners) do not have to participate in an abortion if they have a conscientious objection. A conscientious objection is a refusal to participate in abortion on the grounds of conscience. This may be informed by religious, moral, philosophical, ethical, or personal beliefs. Currently, there is very little investigation into the impact of conscientious objection on service users in Britain. The perspectives of service users are imperative in understanding the real-world consequences and potential impact of conscientious objection and should be considered when creating and reviewing policies and guidelines. This research provided a platform for women and those who can become pregnant to share their experiences and opinions at a time when these voices are largely excluded in the great tradition of Western political philosophy and law-making processes.MethodFive service users were interviewed using a narrative interview approach to uncover their abortion journeys and experiences of conscientious objection.FindingsThe findings were presented as found poems and uncovered that doctors are not always: informing service users that they have a conscientious objection to abortion, giving service users enough information to access abortion (indirect referral), treating them non-judgmentally, and providing medically correct information. Service users did not experience burdens such as long waiting times and were still able to access legal abortion. However, service users did experience negative emotional effects, as they were often left feeling scared, angry, and hopeless when they were not referred and/or were mistreated.ConclusionsFindings indicate that conscientious objection could work in practice. However, it is currently failing some individuals on an emotional level, as not all doctors are adhering to guidelines. Conscientious objection in Britain needs to be addressed, to ensure service users receive fair, impartial, non-judgmental care.

Project description:BackgroundExploring lived experiences of recovered COVID-19 patients might have scientific, social, and policy relevance that can apply to the healthcare infrastructure. This multi-center descriptive phenomenological study was conducted to explore lived experiences of Palestinian patients who recovered from COVID-19. METHODS: This was a descriptive phenomenological study. A purposive sampling technique was used to recruit the study participants. Semi-structured qualitative interviews were conducted with patients who recovered from COVID-19 (n = 20). The interviews were transcribed verbatim. The transcripts were analyzed using Colaizzi's phenomenological approach which consisted of the following steps: 1) familiarization, 2) identification of significant statements, 3) formulation of the meanings, 4) clustering the themes, 5) development of an exhaustive description of the phenomenon, 6) production of the fundamental structure, and 7) verification of the fundamental structure.ResultsSemi-structured interviews were conducted with 14 male and 6 female patients who recovered from COVID-19. The total duration of the interview time was 998 min (16.6 h). The qualitative data collected during the interviews were categorized into 5 major themes and 16 subthemes that exhaustively described the phenomenon. The major themes were relevant to: 1) emotions after learning about the infection, 2) experiencing social exclusion and stigma, 3) the experienced symptoms, 4) supportive treatments, herbs, rituals, and social support, 5) and life after recovery.ConclusionThe interviewees recounted experiencing negative emotions, social exclusion, and stigma because of their infection. It may be important for mental health promotion to be an integral part of the care plan for patients with COVID-19. More studies are still needed to investigate if introducing mental healthcare providers to the care team of patients with COVID-19 can improve the experiences of the patients.

Project description:BackgroundAuditory hallucinations--or voices--are a common feature of many psychiatric disorders and are also experienced by individuals with no psychiatric history. Understanding of the variation in subjective experiences of hallucination is central to psychiatry, yet systematic empirical research on the phenomenology of auditory hallucinations remains scarce. We aimed to record a detailed and diverse collection of experiences, in the words of the people who hear voices themselves.MethodsWe made a 13 item questionnaire available online for 3 months. To elicit phenomenologically rich data, we designed a combination of open-ended and closed-ended questions, which drew on service-user perspectives and approaches from phenomenological psychiatry, psychology, and medical humanities. We invited people aged 16-84 years with experience of voice-hearing to take part via an advertisement circulated through clinical networks, hearing voices groups, and other mental health forums. We combined qualitative and quantitative methods, and used inductive thematic analysis to code the data and ?(2) tests to test additional associations of selected codes.FindingsBetween Sept 9 and Nov 29, 2013, 153 participants completed the study. Most participants described hearing multiple voices (124 [81%] of 153 individuals) with characterful qualities (106 [69%] individuals). Less than half of the participants reported hearing literally auditory voices--70 (46%) individuals reported either thought-like or mixed experiences. 101 (66%) participants reported bodily sensations while they heard voices, and these sensations were significantly associated with experiences of abusive or violent voices (p=0·024). Although fear, anxiety, depression, and stress were often associated with voices, 48 (31%) participants reported positive emotions and 49 (32%) reported neutral emotions. Our statistical analysis showed that mixed voices were more likely to have changed over time (p=0·030), be internally located (p=0·010), and be conversational in nature (p=0·010).InterpretationThis study is, to our knowledge, the largest mixed-methods investigation of auditory hallucination phenomenology so far. Our survey was completed by a diverse sample of people who hear voices with various diagnoses and clinical histories. Our findings both overlap with past large-sample investigations of auditory hallucination and suggest potentially important new findings about the association between acoustic perception and thought, somatic and multisensorial features of auditory hallucinations, and the link between auditory hallucinations and characterological entities.FundingWellcome Trust.

Dataset Information

The VOICES Typology of Curatorial Decisions in Narrative Collections of the Lived Experiences of Mental Health Service Use, Recovery, or Madness: Qualitative Study.

Publications

The VOICES Typology of Curatorial Decisions in Narrative Collections of the Lived Experiences of Mental Health Service Use, Recovery, or Madness: Qualitative Study.

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