Health Expectations最新文献

{"title":"Correction to “Relational Practices for Meaningful Inclusion in Health Research: Results of a Deliberative Dialogue Study”","authors":"","doi":"10.1111/hex.70056","DOIUrl":"10.1111/hex.70056","url":null,"abstract":"<p>K. Plamondon, D. Banner, M. A. Cary, et al., “Relational Practices for Meaningful Inclusion in Research: Results of a Deliberative Dialogue Study,” <i>Health Expectations</i> (2023): 1-15.</p><p>Coauthor Melissa Faulkner's name should be followed by “BSN” rather than “RN.”</p><p>We apologize for this error.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":null,"pages":null},"PeriodicalIF":3.0,"publicationDate":"2024-10-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11458660/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142395456","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Effect of Health Literacy and Patient Activation on Health-Seeking Behaviour: A Cross-Sectional Study in Turkey","authors":"Mehmet Akif Erişen","doi":"10.1111/hex.70052","DOIUrl":"10.1111/hex.70052","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>The study aimed to investigate the effect of health literacy and patient activation on health-seeking behaviour. In addition, the role of general health status and age variables in this effect was also addressed.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>The research using quantitative methods is cross-sectional. The participant information form, health literacy scale, patient activation scale and health-seeking behaviour scale were used in the study. In addition to descriptive analyses, difference analysis, correlation analysis and multiple linear regression analysis were used in the study. The study participants consisted of 1045 adult individuals living in Turkey.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>According to the correlation analysis results, it was determined that health literacy and patient activation were significantly positively associated with health-seeking behaviour. According to multiple linear regression analysis, the independent variables of health literacy, patient activation, age and general health status significantly affected health-seeking behaviour. Accordingly, patient activation and general health status positively affect health-seeking behaviour, while health literacy and age have a negative effect.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>To positively improve individuals’ health-seeking behaviours, it is thought that it would be appropriate to focus on individuals whose general health status is not good, who are not actively involved in their treatment, who have high health literacy and who are elderly.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>Since the research examines the effect of patient activation and health literacy on health-seeking behaviour, it is of great importance for the research that the public and patients are included in the study from the design of the research to the presentation of the findings. The emergence of the study was made possible by the public and patients’ evaluations of the research topics and their participation in the survey.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":null,"pages":null},"PeriodicalIF":3.0,"publicationDate":"2024-10-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11456960/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142382520","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Feasibility, Fidelity and Acceptability of a Person-Centred Care Transition Support Intervention for Stroke Survivors: A Non-Randomised Controlled Study","authors":"Sebastian Lindblom,&nbsp;Maria Flink,&nbsp;Lena von Koch,&nbsp;Ann Charlotte Laska,&nbsp;Charlotte Ytterberg","doi":"10.1111/hex.70057","DOIUrl":"10.1111/hex.70057","url":null,"abstract":"&lt;div&gt;\u0000 \u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Background&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Care transitions from hospital to home are a critical period for patients and their families, especially after a stroke. The aim of this study was to assess the feasibility, fidelity and acceptability of a co-designed care transition support for stroke survivors.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Methods&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;A non-randomised controlled feasibility study recruiting patients who had had stroke and who were to be discharged home and referred to a neurorehabilitation team in primary healthcare was conducted. Data on the feasibility of recruitment and fidelity of the intervention were collected continuously during the study with screening lists and checklists. Data on the perceived quality of care transition were collected at 1-week post-discharge with the Care Transition Measure. Data on participant characteristics, disease-related data and outcomes were collected at baseline (hospitalisation), 1 week and 3 months post-discharge. Data on the acceptability of the intervention from the perspective of healthcare professionals were collected at 3 months using the Normalisation Measure Development Questionnaire.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Results&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Altogether, 49 stroke survivors were included in the study: 28 in the intervention group and 21 in the control group. The recruitment and data collection of patient characteristics, disease-related data, functioning and outcomes were feasible. The fidelity of the intervention differed in relation to the different components of the co-designed care transition support. The intervention was acceptable from the perspective of healthcare professionals. Concerns were raised about the fidelity of the intervention. A positive direction of effects of the intervention on the perceived quality of the care transition was found.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Conclusion&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;The study design, data collection, procedures and intervention were deemed feasible and acceptable. Modifications are needed to improve intervention fidelity by supporting healthcare professionals to apply the intervention. The feasibility study showed a positive direction of effect on perceived quality with the care transition, but a large-scale trial is needed to determine its effectiveness.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Patient or Public Contribution&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Stroke survivors, significant others and healthcare professionals were involved in a co-design process, including the joint development of the int","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":null,"pages":null},"PeriodicalIF":3.0,"publicationDate":"2024-10-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11456962/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142382521","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A Joanna Briggs Institute Framework Approach to Shared Decision Making in End-of-Life","authors":"Marta Gil Glaría,&nbsp;María Martín Fernández,&nbsp;Carla Salgado,&nbsp;María José Hernández-Leal","doi":"10.1111/hex.70041","DOIUrl":"10.1111/hex.70041","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Aim</h3>\u0000 \u0000 <p>To implement shared decision-making (SDM) through a patient decision aid (PtDA) for the initiation of palliative care (PC) in end-of-life (EOL) cancer patients.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methodology</h3>\u0000 \u0000 <p>A comprehensive Scoping Review was conducted on SDM in PubMed, CINAHL and PsycInfo. An evidence-based implementation of PtDAs was created using the Joanna Briggs Institute framework, which followed rigorous pillars: (1) context, (2) facilitation and (3) evaluation.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Fifteen studies were identified and categorised into (1) Implementation characteristics and (2) Strategies for implementing SDM in terminally ill cancer patients. SDM should consider the decision-making location, optimal timing, participants and decision type. Strategies include professional training, PtDAs and implementation programmes. A PtDA implementation protocol in video format for deciding to initiate PC is proposed, following International Patient Decision Aid Standards (IPDAS) and Clinical Practice Guidelines (CPG).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>SDM implementation should be guided by evidence-based methodological models justifying and structuring its execution, especially in complex and interdisciplinary contexts. National or international frameworks facilitate the adoption of health innovations, such as PtDAs, benefiting patients and improving their usage.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Practice Implications</h3>\u0000 \u0000 <p>SDM is not just a concept but an important approach to the Care of cancer patients at EOL, enhancing patient satisfaction and improving care quality. The success and sustainability of SDM hinge on the fundamental aspects of staff training, interdisciplinary collaboration and ongoing evaluation. The lack of specific aid in Spanish underscores the immediate need for local development. Further research is needed in this area, as most reviewed studies did not measure SDM effectiveness in diverse hospital settings.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>This proposal was developed based on the experience and input of the nursing staff from the healthcare service where it is intended to be implemented.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":null,"pages":null},"PeriodicalIF":3.0,"publicationDate":"2024-10-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11456961/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142382519","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Living With and Beyond Cancer With Comorbid Conditions: Qualitative Insights to Understand Psychosocial Support Needs","authors":"Debbie Cavers,&nbsp;Sarah Cunningham-Burley,&nbsp;Eila Watson,&nbsp;Elspeth Banks,&nbsp;Christine Campbell","doi":"10.1111/hex.70039","DOIUrl":"10.1111/hex.70039","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>There is a pressing need to understand and explore the complex experiences and psychosocial support needs of people LWBC-CM and their informal caregivers, to inform survivorship and supportive care interventions.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>In-depth qualitative interviews were conducted with people LWBC-CM and their informal caregivers in Scotland, invited via primary care. One-to-one, face-to-face interviews were conducted with informed consent exploring experiences of symptoms, psychosocial support needs and interactions with health services. Interviews were transcribed and analysed using a thematic approach.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Forty-one people LWBC-CM and twenty-three informal caregivers were interviewed. Four themes were identified: the Physical and Psychological Impact of Cancer and Comorbidity, Dominant Storie—Prioritising Conditions and Making Sense of Illness, Navigating Health Services and Treatments and Caring for People with Complex Health Conditions. Type and severity of conditions mediated people's experiences and daily living. Complex fatigue—fatigue arising from a number of health conditions—dominated symptomology. Participants navigated multiple appointments and complex medication regimes. Patients identified the need for acknowledgement of other chronic conditions and for streamlined care provision. Mutual caring and social isolation were also identified as part of the caring relationship.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>There is a mandate to address the psychosocial support needs of people LWBC-CM, and their informal carers, given the burden of treatment for cancer survivors with moderate to severe complex conditions as they navigate health services.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>A patient representative has been involved in all stages of the study from development of the application through study design, commenting on documentation, analysis of transcripts and writing the manuscript. They are included as an author on the manuscript.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":null,"pages":null},"PeriodicalIF":3.0,"publicationDate":"2024-10-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11456226/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142378641","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"‘Is It Safe? Is it not?’ A Youth-Led Photovoice Study of Youth Perspectives of COVID-19 Vaccine Confidence","authors":"Shelby Mckee,&nbsp;Natasha Y. Sheikhan,&nbsp;Sean Patenaude,&nbsp;Jo Henderson,&nbsp;Rodney Knight,&nbsp;Sean A. Kidd,&nbsp;Skye Barbic,&nbsp;Aileen O'Reilly,&nbsp;Lisa D. Hawke","doi":"10.1111/hex.70051","DOIUrl":"10.1111/hex.70051","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Youth have been uniquely affected by the COVID-19 pandemic. Despite high rates of COVID-19 infection, youth had one of the lowest vaccine uptake rates. Certain characteristics can affect vaccine uptake, such as mental health and substance use, but it is important to understand uptake for an effective response to pandemics.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Objective</h3>\u0000 \u0000 <p>This study examined the perspectives of youth with mental health or substance use concerns on COVID-19 vaccine confidence, hesitancy and overall COVID-19 vaccine perspectives.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Using photovoice, a community-based participatory research method, a sample of 27 youth aged 14−24 years participated in a series of photography workshops and focus groups. Participants submitted final photographs for discussion. Focus groups were recorded, transcribed and thematically analysed.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Four themes were generated: (1) Youth deciphered the vaccine discourse in a changing information landscape; (2) mixed perspectives of families, friends and loved ones influenced the vaccine journey; (3) complex societal influences affected views and decisions around the COVID-19 vaccine; and (4) youth navigated their vaccine journeys through first- and second-hand experiences. The four themes and subthemes highlight the evolution of youth's journeys with the COVID-19 vaccine over the course of the pandemic and into the late-pandemic period.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Youth with mental health or substance use challenges navigated a complex environment during the COVID-19 pandemic. The wide variety of factors influencing vaccine perspectives should be taken into account in public health messaging and future research on youth vaccine uptake. Youth-led and youth-engaged research can help solicit rich and meaningful perspectives of young people on important public health issues.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>This was a youth-led study. A youth research analyst conducted the study activities together with the support of a youth advisory group, an adult photographer with lived experience, and a scientific team.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":null,"pages":null},"PeriodicalIF":3.0,"publicationDate":"2024-10-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11456145/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142378640","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Letter to the Editor: Best Practices on Public and Patient Involvement in Interprofessional Healthcare Education","authors":"Ricardo J. O. Ferreira,&nbsp;Matilde Leal,&nbsp;Elsa Frazão Mateus,&nbsp;Lucija Gosak,&nbsp;Matthijs H. Bosveld,&nbsp;Cathy C. Kline,&nbsp;the PULPIT Consortium","doi":"10.1111/hex.70053","DOIUrl":"10.1111/hex.70053","url":null,"abstract":"&lt;p&gt;We read with interest the article ‘Public Participation in Healthcare Student Education: An Umbrella Review’ by Nowell et al. [&lt;span&gt;1&lt;/span&gt;]. Their work highlights the benefits of involving patients in healthcare education, such as enhancing empathy, patient-centred decision-making and safety [&lt;span&gt;1&lt;/span&gt;].&lt;/p&gt;&lt;p&gt;The PULPIT Consortium, funded by ERASMUS+, promotes public and patient involvement (PPI) in the interprofessional education (IPE) of healthcare students [&lt;span&gt;2&lt;/span&gt;]. Our project addresses students' limited early patient interaction and poor understanding of patient-centred care and healthcare roles. We aim to implement an educational module that will be freely accessible through a dedicated online platform, as well as recommendations for PPI in the IPE of undergraduate healthcare students, following the ‘Vancouver Statement’ [&lt;span&gt;3&lt;/span&gt;]. This project builds upon two main partner initiatives: the ‘Health Mentors Programme’, coordinated by the Patient and Community Partnership for Education (PCPE; https://health.ubc.ca/pcpe), and the ‘Patient as a Person’ project [&lt;span&gt;4&lt;/span&gt;], developed by the Maastricht University and the Patient as a Person Foundation (https://mensachterdepatient.nl/), which have been instrumental in advancing patient involvement in healthcare education.&lt;/p&gt;&lt;p&gt;Nowell et al.'s article [&lt;span&gt;1&lt;/span&gt;] is a valuable resource for raising awareness of the benefits and complexities of PPI in healthcare education. Despite the wealth of research on the benefits, &lt;i&gt;authentic&lt;/i&gt; patient involvement in IPE remains a blind spot. We challenge interprofessional educators to involve ‘Experts by Experience’ (EBEs) in all aspects of IPE (curriculum design, delivery, research and evaluation) so that students can learn how to collaborate with the public and patients as equal and valued members of the healthcare team. It is long overdue and is the core purpose of the PULPIT Consortium.&lt;/p&gt;&lt;p&gt;&lt;b&gt;Ricardo J. O. Ferreira:&lt;/b&gt; conceptualization, supervision, writing–original draft, funding acquisition. &lt;b&gt;Matilde Leal:&lt;/b&gt; writing–original draft, project administration. &lt;b&gt;Elsa Frazão Mateus:&lt;/b&gt; writing–review and editing. &lt;b&gt;Lucija Gosak:&lt;/b&gt; writing–review and editing. &lt;b&gt;Matthijs H. Bosveld:&lt;/b&gt; conceptualization, writing–review and editing. &lt;b&gt;Cathy C. Kline:&lt;/b&gt; conceptualization, writing–review and editing.&lt;/p&gt;&lt;p&gt;The members of the PULPIT Consortium include the following: Cristina Baixinho, Adriana Henriques, Andreia Silva Costa, Paulo Costa (Escola Superior de Enfermagem de Lisboa, Lisbon, Portugal); Catarina Lima, Pedro Morgado, Nadine Santos (Escola de Medicina da Universidade do Minho, Braga, Portugal); Dante Mulder, Sjim Romme (Stichting Mens achter de Patiënt, Eijsden, The Netherlands); Koen Goffings, Bruno Van Koeckhoven (Hogeschool PXL, Hasselt, Belgium); Barbara Kegl, Mateja Lorber (Univerza v Mariboru, Maribor, Slovenia); Danielle Derijcke, Mitchell Silva (EUPATI Belgium, Belgium); Angela Towle (Universi","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":null,"pages":null},"PeriodicalIF":3.0,"publicationDate":"2024-10-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11450375/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142373607","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Pathways for Strengthening Lived Experience Leadership for Transformative Systems Change: Reflections on Research and Collective Change Strategies","authors":"Mark Loughhead,&nbsp;Ellie Hodges,&nbsp;Heather McIntyre,&nbsp;Nicholas Procter,&nbsp;Anne Barbara,&nbsp;Brooke Bickley,&nbsp;Lee Martinez,&nbsp;Leticia Albrecht,&nbsp;Lisa Huber","doi":"10.1111/hex.70048","DOIUrl":"10.1111/hex.70048","url":null,"abstract":"&lt;div&gt;\u0000 \u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Introduction&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;The Activating Lived Experience Leadership (ALEL) project was a South Australian participatory action research project that aimed to improve the ways lived experience is recognised, valued and integrated across mental health and social sector systems. ALEL was completed during 2019–2021, where it engaged 182 participants in generating community action and research knowledge.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Objective&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Our paper discusses the project's processes of building a collective partnership among lived experience leaders and other leaders from within the sector, so that the actions and strategies identified through research could be implemented by systems-level impact. We describe the collaborative process and key learnings that resulted in eight key action areas for transformative systems change in South Australia.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Methods&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;The project invited a diverse range of self-identified lived experience and other leaders to be involved in a PAR process featuring formal qualitative research (focus groups, surveys and interviews) as well as community development activities (leaders' summit meetings, consultations, training and community of practice meetings). These processes were used to help us describe the purpose, achievements and potential of lived experience leadership. Project priorities and systems-level analysis was also undertaken with lived experience sector leaders and project advisors across two leaders' summit meetings, integrating research outcomes with sector planning to define high-level actions and a vision for transformational change.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Results&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Participatory action research as informed by systems change and collective impact strategies assisted the project to generate detailed findings about the experiences and complexities of lived experience leadership, and collective responses of how systems could better support, be accountable to and leverage lived experience perspectives, experience and peer-work approaches.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Conclusion&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Systems change to define, value and embed lived experience leadership benefits from collective efforts in both formal research and sector development activities. These can be used to generate foundational understandings and guidance for working together in genuine ways for transforming mental health and social sector systems, experience and outcomes.&lt;/p&gt;\u0000 ","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":null,"pages":null},"PeriodicalIF":3.0,"publicationDate":"2024-10-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11447884/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142367543","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Disrupted Candidacy: A Longitudinal Examination of the Constrained Healthcare-Access Journeys of National Health Service Workers in Scotland Seeking Supports for Long COVID Illness","authors":"Nicholas Norman Adams,&nbsp;Emma MacIver,&nbsp;Flora Douglas,&nbsp;Catriona Kennedy,&nbsp;Diane Skåtun,&nbsp;Virginia Hernandez Santiago,&nbsp;Nicola Torrance,&nbsp;Aileen Grant","doi":"10.1111/hex.70050","DOIUrl":"10.1111/hex.70050","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Evidence examines how persons experiencing Long COVID (LC) struggle to secure healthcare for symptoms. However, few studies examine healthcare workers experiencing LC, nor the complex and multiple difficulties faced when seeking and receiving healthcare.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>This study is based on two phases of longitudinally conducted qualitative interviews, 6 months apart, with National Health Service (NHS) workers experiencing LC, from different occupational roles at NHS locales in Scotland (first interviews, <i>n</i> = 50; second interviews, <i>n</i> = 44).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Multiple factors restricted healthcare access, including worries about pressuring the NHS and concerns over LC being legitimised. When healthcare was sought, workers struggled to secure support, referrals and treatment. The following reasons were included: (1) context: the restrictive pandemic healthcare context; (2) illness climate: low GP knowledge surrounding LC and how this could be treated, trends for ascribing symptoms to other causes and reluctance to diagnose LC; (3) sense-making of LC: healthcare availability linked to occupational role identity. To visualise and examine healthcare barriers, <i>candidacy theory</i> is applied, drawing inferences between healthcare context, illness climate, sense-making and identities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>NHS workers' complex journeys represent <i>Disrupted Candidacy</i>, intersecting challenges across candidacy domains, restricting the seeking and receiving of LC healthcare. Findings provide insights into why NHS workers resisted and withdrew from healthcare-seeking, and the barriers they faced when attempting to secure LC support. This study presents a pathway for future LC illness research to use a modified candidacy theory framework.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient and Public Contribution</h3>\u0000 \u0000 <p>This research focuses on amplifying and learning from lived experiences, and <i>the voices</i> of NHS workers in Scotland experiencing LC. Interviews represent primary data for this study; thus, participants and their healthcare journeys are centred in this research and all aspects of production, reporting and output. Explicit discussions of stakeholder group involvement are highlighted in the methods section.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":null,"pages":null},"PeriodicalIF":3.0,"publicationDate":"2024-10-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11447105/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142367539","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Living With Multiple Sclerosis: The Rainbow of Inspiring Experiences and Resilience in the Face of the Disease","authors":"Leily Zare,&nbsp;Nahid Dehghan Nayeri,&nbsp;Fatemeh Bahramnezhad,&nbsp;Arezoo Rasti","doi":"10.1111/hex.70044","DOIUrl":"10.1111/hex.70044","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Multiple sclerosis (MS), a leading cause of disability in young adults worldwide, including in Iran, affects their whole life so common care is no longer effective. In this regard, context-based approaches should be considered for a holistic care delivery that accords with the patients' inputs. We aimed to explore patients' understanding of MS and their personal experiences of living with this disease.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A qualitative descriptive study was conducted. The data were collected through in-depth, semi-structured interviews with 17 patients. These patients were selected using a purposive sampling method, and the data were analyzed using a conventional content analysis approach.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Three main categories and nine subcategories were identified: Thunder and Lightning strike in the form of Displeasure, Social wrong beliefs, Experiences of Constraints, Interference with Life Stages and Dark Spots on the Horizon of the Future; Subtle Beam consisting of Extrinsic Light Radiation, Reflection of Individual Effort and Formation of a Rainbow by Resilience and Hope for a Bright Future.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>By offering multidimensional support, patients reported a shift from fear to a vibrant life. Although research often focuses on the negative aspects of MS, this study recognizes both positive and negative aspects. These findings can contribute to future interventional research.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>During the explanation of research goals and consent acquisition, participants were reminded that sharing their experiences could provide valuable insights benefiting others coping with or at risk of the same disease. Additionally, during data analysis, codes extracted were reviewed and improved with active participant involvement.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":null,"pages":null},"PeriodicalIF":3.0,"publicationDate":"2024-10-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11446960/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142367541","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}