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Lived experience research as a resource for recovery: a mixed methods study.

ABSTRACT: BACKGROUND:Lived experience research is conducted by people who have experience of mental health issues and is therefore better placed than more traditional research to illuminate participants' experiences. Findings that focus on identifying enablers of recovery from a lived experience perspective have the potential to assist people in their recovery process. However, this lived experience research is often difficult to find, access and interpret. We co-produced user-friendly and engaging resources to disseminate findings from six lived experience research studies. This paper seeks to answer the research questions: a) Did exposure to lived experience research increase hopefulness for participants?; and b) How else did interacting with lived experience research resources influence participants' lives? METHODS:Thirty-eight participants were introduced to four resources of their choosing by peer workers over a four-week period. The helpfulness of resources was evaluated using mixed methods, including a quasi-experimental analysis of change in hope, an anonymous survey and in-depth interviews. RESULTS:Findings indicated that the resources promoted hope, but that increases in hopefulness may not be seen immediately. Other impacts include that the resources: encouraged helpful activities; provided a positive experience; increased valued knowledge; encouraged people to reflect on their journey and think constructively about mental health issues; helped people to feel less alone; and assisted people to explain their situation to others. CONCLUSIONS:The research suggests the potential usefulness of lived experience research resources, presented in user-friendly formats, in the lives of people who experience mental health issues and implies a need to nurture this type of research.

SUBMITTER: Honey A

PROVIDER: S-EPMC7507671 | biostudies-literature | 2020 Sep

REPOSITORIES: biostudies-literature

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Lived experience research as a resource for recovery: a mixed methods study.

Honey Anne A Boydell Katherine M KM Coniglio Francesca F Do Trang Thuy TT Dunn Leonie L Gill Katherine K Glover Helen H Hines Monique M Scanlan Justin Newton JN Tooth Barbara B

BMC psychiatry 20200921 1

<h4>Background</h4>Lived experience research is conducted by people who have experience of mental health issues and is therefore better placed than more traditional research to illuminate participants' experiences. Findings that focus on identifying enablers of recovery from a lived experience perspective have the potential to assist people in their recovery process. However, this lived experience research is often difficult to find, access and interpret. We co-produced user-friendly and engagin ...[more]

PMID: 32958045

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Project description:BackgroundCurrently, within Australia, 3.6% of all emergency department (ED) presentations are mental health-related. Information about the context of the person presenting to the ED (beyond immediate needs), including their psychosocial disability (PSD) National Disability Insurance Scheme (NDIS) plan, is reported as incomplete and fragmented. There are missed opportunities for early support and care continuity that could potentially inform ED practitioners to revise current practices.ObjectiveThe aims of this study are: (1) to obtain original data from the lived experience voice of those with the PSD NDIS plan and their experience when presenting to an ED, (2) to gather information from NDIS service providers to reveal communication pathways between the ED and NDIS services, and (3) to gain knowledge from ED clinicians around processes for improving continuity of care and consumer experience.MethodsThis inductive, mixed methods phenomenological study will involve data collection analyzed sequentially, with each stage informing future stages of the research. Interviews will focus on the lived experience voice exploring concerns that have led to an ED presentation, alongside an analysis of associated clinical and administrative documentation and communications. Focus groups with NDIS support workers and support coordinators will provide phenomenological data around the experience from their perspective. National quantitative surveys among those with a PSD NDIS plan and emergency services clinicians will provide insight into current practices within community care and ED presentations. The research project design includes a lived experience advisory group who are assisting with the design of the interview and focus group schedules and national surveys, as well as in shaping the interpretation of qualitative information. All transcripts will be subject to thematic analysis to understand individuals' meaning-making of these complex and particular phenomena. The research team includes a lived experience researcher and a lived experience carer (PhD candidate).ResultsThis study is funded by MIND Australia as a PhD industry scholarship, which commenced in April 2020. A systematic review as a preresearch activity has been completed and is currently under review. The Human Research Ethics Committee of the University of South Australia has approved this project. An advisory group has been selected, and interview, focus group, and survey schedules are currently being codesigned. Recruitment will commence in November 2021. It is envisaged that data collection will be completed by June 2022.ConclusionsUnderstanding the lived experience of the precare, during care, and postcare stages of ED presentations from the perspective of those with a PSD NDIS plan will inform the research team around current practices and provide information about improvement for pathways of care for consumers and carers, while also informing health policy.International registered report identifier (irrid)PRR1-10.2196/33268.

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:BackgroundDigital innovations in medicine are disruptive technologies that can change the way diagnostic procedures and treatments are delivered. Such innovations are typically designed in teams with different disciplinary backgrounds. This paper concentrates on 2 interdisciplinary research teams with 20 members from the medicine and engineering sciences working jointly on digital health solutions.ObjectiveThe aim of this paper was to identify factors on the individual, team, and organizational levels that influence the implementation of interdisciplinary research projects elaborating on digital applications for medicine and, based on the results, to draw conclusions for the proactive design of the interdisciplinary research process to make these projects successful.MethodsTo achieve this aim, 2 interdisciplinary research teams were observed, and a small case study (response rate: 15/20, 75%) was conducted using a web-based questionnaire containing both closed and open self-report questions. The Spearman rank correlation coefficient was calculated to analyze the quantitative data. The answers to the open-ended questions were subjected to qualitative content analysis.ResultsWith regard to the interdisciplinary research projects investigated, the influencing factors of the three levels presented (individual, team, and organization) have proven to be relevant for interdisciplinary research cooperation.ConclusionsWith regard to recommendations for the future design of interdisciplinary cooperation, management aspects are addressed, that is, the installation of a coordinator, systematic definition of goals, required resources, and necessary efforts on the part of the involved interdisciplinary research partners. As only small groups were investigated, further research in this field is necessary to derive more general recommendations for interdisciplinary research teams.Trial registrationGerman Clinical Trials Register, DRKS00023909, https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00023909 ; German Clinical Trials Register, DRKS00025077, https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00025077.

Project description:IntroductionPatient-centered outcome measurement (PCOM) is essential to capture the outcomes important to patients. However, it presents unique challenges in rare diseases, particularly those that are "young" (not diagnosed before the twenty-first century), with limited literature, lack of disease-specific patient-reported outcome (PRO) measures, and difficult sampling and data collection. One example of this is NUT (nuclear protein in testis) carcinoma (NUTca), a rare and rapidly progressing cancer, with tumors preliminary in the head, neck, and lungs. The published literature on NUTca is scarce. The limited number of case reports focus primarily on the clinical development and presentation of tumors. Currently, there are no publications describing the patient experience of NUTca and no specific PRO measures to assess the patient experience. We conducted mixed-methods research, including concept elicitation interviews, cognitive debriefing, and quantitative data analyses, to fill this evidence gap and describe challenges and solutions in the context of NUTca.MethodsAs published previously, our conceptualization of NUTca was based on elicitation interviews with 27 participants (n = 10 patients; n = 17 caregivers) using a semi-structured format; this framework formed the basis for a bolt-on strategy to develop a bespoke PRO measure based on the EORTC QLQ-C30, supplemented by targeted items from the EORTC Item Library and new items. In this publication, 20 participants were interviewed (n = 10 patients; n = 10 caregivers) to debrief items. Given the variety of tumor locations and related symptoms, and the small sample of patients providing responses to location-specific symptom items, we used response option endorsement frequencies to illuminate the variability of response for the concepts measured.ResultsThis study highlights the challenges in implementing patient-centric research to inform and develop PRO measures in rare diseases.ConclusionsOur mixed-methods research used pragmatic solutions to collect patient experience data and provides an evidence base to inform PCOM in clinical programs in this rapidly progressing rare cancer with high unmet need.

Project description:OBJECTIVES:To develop outcome measures to assess practical management of primary surgical wounds and patient experience. DESIGN:Mixed methods, including qualitative interviews and data extraction from published randomised controlled trials (RCTs). SETTING:Two university-teaching NHS hospitals and three district NHS hospitals in the South West and Midlands regions of England. PARTICIPANTS:Sixty-four patients and 15 healthcare professionals from abdominal general surgical specialities and obstetrics (caesarean section). METHODS:Measures were developed according to standard guidelines to identify issues relevant to patients' experiences of surgical wounds and dressings, including analysis of existing RCT outcomes and semi-structured interviews. These were written into provisional questionnaire items for a single outcome measure. Cognitive interviews with patients and healthcare professionals assessed face validity, acceptability and relevance. Findings from interviews were regularly shared with the study team who suggested amendments to modify and reword items to improve understanding before further iterative testing with patients and healthcare professionals. RESULTS:Analyses of existing RCT outcomes and interviews produced a total of 69 issues. Pretesting and iterative revision established the need for two separate measures. One measure addresses healthcare professionals' experience of wound management in two key areas: exudate and its impact, and allergic reactions to the dressing. The other measure addresses patients' experience of wounds in seven key areas: wound comfort, dressing removal, dressings to protect the wound, impact on daily activities, ease of movement, anxiety about the wound and satisfaction with dressing. Each measure took less than five?min to complete and both were understood and acceptable to patients and healthcare professionals. CONCLUSION:This in-depth study has developed two measures to assess practical management of primary surgical wounds and patient experience. Further work to test their validity, reliability and application to other settings is now required. TRIAL REGISTRATION NUMBER:HTA - 12/200/04; Pre-results.

Project description:ObjectivesTo explore women's experiences of early labour care focusing on sociodemographic differences, and to examine the effect of antenatal education, using mixed methods.SettingEngland, 2014.ParticipantsWomen who completed postal questionnaires about their experience of maternity care, including questions about antenatal education, early labour and sociodemographic factors, included space for free-text comments.Outcome measuresWorries about labour, contact with midwives in early labour and subsequent care.MethodsThis study was based on secondary analysis of a national maternity survey carried out in England in 2014. Quantitative data were analysed using descriptive statistics and binary logistic regression; qualitative data were analysed using a thematic content analytic approach.ResultsCompleted questionnaires were received from 4578 women (47% response rate). There were significant differences by sociodemographic factors, particularly ethnicity, in women's worries about early labour. Compared with white women, women from black or minority ethnic groups had an adjusted OR of 1.93 (95% CI 1.56 to 2.39) of feeling worried about not knowing when labour would start. Among women who contacted a midwife at the start of labour, 84% perceived their advice as appropriate, more in older and multiparous women. Overall, 64% of women were asked to come to the hospital at this time, more in multiparous women (adjusted OR 1.63, 95% CI 1.35 to 1.96). Those who did not have access to antenatal education experienced greater worry about early labour. Five themes emerged from the qualitative analysis: 'Differentiating between early and active labour', 'Staff attitudes', 'Not being allowed…', 'Previous labours' and 'Perceived consequences for women'.ConclusionThese findings reinforce the importance of providing reassurance to women in early labour, taking care that women do not feel neglected or dismissed. In particular, primiparous and ethnic minority women reported greater worry about early labour and require additional reassurance.

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Lived experience research as a resource for recovery: a mixed methods study.

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Lived experience research as a resource for recovery: a mixed methods study.

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