Health Expectations最新文献

{"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":"27 5","pages":""},"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":"27 5","pages":""},"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":"27 5","pages":""},"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":"27 5","pages":""},"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":"27 5","pages":""},"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":"27 5","pages":""},"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}

{"title":"How Do Australians Manage Diagnostic Testing Risks? Focus Groups Linked to a Model of Behaviour Change","authors":"Tomas Rozbroj,&nbsp;Catriona Parker,&nbsp;Romi Haas,&nbsp;Jason A. Wallis,&nbsp;Rachelle Buchbinder,&nbsp;Denise A. O'Connor","doi":"10.1111/hex.70038","DOIUrl":"10.1111/hex.70038","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Diagnostic tests carry significant risks, and communications are needed to help lay people consider these. The development of communications has been hindered by poor knowledge about how lay people understand and negotiate testing risks. We examined lay Australians' perceptions of diagnostic testing risks and how these risks are managed.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>We completed 12 semistructured online focus groups with 61 Australian adults (18+) between April and June 2022. Participants were divided into younger/older (&gt; 50 years) and male/female groups. Using semistructured discussion and exploring two hypothetical scenarios, we examined attitudes to diagnostic tests, their risks and how test risks were managed. Themes were identified, subanalysed to identify age and gender differences and mapped to the COM-B model of behaviour change.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The six themes provided detailed accounts of how participants considered themselves able, empowered and assertive when negotiating testing risks and of complex ways in which relationships with health workers, personal experiences and structural factors influenced negotiating testing risks. COM-B identified multiple opportunities for leveraging these lay beliefs in health promotion. It also identified barriers, including narrow concepts of testing risks, challenges during shared decision-making and overestimation of personal influence on testing decisions.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Significance</h3>\u0000 \u0000 <p>Our findings matter because they are a novel, detailed account of testing risk beliefs, linked to a model for behaviour change. This will directly inform development of test risk/benefit communications, which are a research priority.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Public Contribution</h3>\u0000 \u0000 <p>The study design enabled participants to influence the discussion agenda, and they could comment on the analysis. Participants contributed insights about their needs, beliefs and experiences related to medical testing, and these will be used to shape future patient-centred decision tools.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 5","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-10-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11447086/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142367540","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":"Supportive Care Needs of Young Adults With Endometriosis: An Open-Ended Online Survey and Exploration of Unmet Needs","authors":"Louis Taffs,&nbsp;Niamh Waters,&nbsp;Jennifer Marino,&nbsp;Charlene Rapsey,&nbsp;Michelle Peate,&nbsp;Jane E. Girling","doi":"10.1111/hex.70045","DOIUrl":"10.1111/hex.70045","url":null,"abstract":"&lt;div&gt;\u0000 \u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Objective&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;The aim of this study is to identify and explore the unmet needs of adolescents and young adults living with endometriosis.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Design&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;An open-ended online survey was conducted, with questions derived from prior research looking at areas of unmet need in healthcare, career and work, financial, information, psychological, social and cultural domains.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Setting and Population&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Self-selecting 18-25 year olds with surgically diagnosed endometriosis (self-reported) currently living in Australia were included as participants.&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;Invitation to participate in an open-ended online survey was shared through the social media of Australian endometriosis organisations and the Royal Women's Hospital, Melbourne. Surveys were analysed qualitatively through template analysis.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Main Outcome Measures&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Recording of the unmet supportive care needs of this population was carried out.&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;One hundred and thirty-one respondents fit the eligibility criteria of being aged 18–25 years (median age 23 years). Most were born in Australia (94%), university-educated (54%) and lived in a metropolitan setting (69%). There was a range of unmet needs that were presented across education, work, healthcare and relationships. Group-specific challenges were identified: doctors either over- or underemphasising future fertility; disrupted sexual and romantic life due to painful sex; managing pain in the classroom and workplace where periods are taboo; and being gender-queer in gynaecological medical spaces.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Conclusions&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;The increasingly young age at which patients are receiving an endometriosis diagnosis precipitates a shift in patient care. The treatment decisions that are being made must be reflective of the unique needs of the adolescents who carry the burden of the disease. Clinicians are advised to be aware of and discuss needs with their patients.&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;The nin","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 5","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-10-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11446957/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142367544","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":"Long COVID and Health Inequalities: What's Next for Research and Policy Advocacy?","authors":"Sarah Akhtar Baz,&nbsp;Mirembe Woodrow,&nbsp;Donna Clutterbuck,&nbsp;Chao Fang,&nbsp;Jordan Mullard,&nbsp;Amitava Banerjee,&nbsp;Sarah Barley-McMullen,&nbsp;Jd Carpentieri,&nbsp;Anne-Laure Donskoy,&nbsp;Alice Faux-Nightingale,&nbsp;Sasha Lewis-Jackson,&nbsp;Margaret E. O'Hara,&nbsp;Tanvi Rai,&nbsp;Ondine Sherwood,&nbsp;Nina Smyth,&nbsp;Kirsty Stanley,&nbsp;Victoria Welsh,&nbsp;Ghazala Mir,&nbsp;Nisreen A. Alwan","doi":"10.1111/hex.70047","DOIUrl":"10.1111/hex.70047","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Organised by the ‘Qualitative Long Covid Network’, a workshop for qualitative Long COVID (LC) researchers, LC charity representatives and people with LC took place in June 2023, where research on the intersectional inequalities affecting LC prevalence, recognition and care was shared and discussed.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Five key themes were drawn up from presentations, discussions and reflections during the workshop, which are presented in this study.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The following five themes are discussed: the unfairness of LC, difficulties in accessing care, mistrust of the healthcare system, a lack of understanding of LC and experiences of stigma and discrimination. Factors that widen or narrow inequalities related to LC were identified.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>A call to action is proposed to investigate and address inequalities through a robust LC research agenda that speaks with conviction to policy and decision-makers. We argue that there needs to be a strong investment in research and evidence-based policy and practice to mitigate the worst effects of the condition and address the inequalities in experience, treatment and support, which are experienced more often and more acutely by some of society's most vulnerable and disadvantaged individuals.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient and Public (PPI) Contribution</h3>\u0000 \u0000 <p>Projects included in this article had PPI ongoing activity to inform their research. A member of the CONVALESCENCE PPI group presented at the QLC Network ‘Long Covid and Health Inequalities’ workshop, as did members of Long COVID Kids, Long COVID Support and Long COVID SOS charities. They were all invited to be co-authors of this article.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 5","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-10-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11447195/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142367542","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":"The Encounter of Two Worlds: Divided Narratives of Decision-Making on Cancer Treatment Between Physicians and Patients","authors":"Weiwei Lu,&nbsp;Dennis Sing Wing Wong","doi":"10.1111/hex.70029","DOIUrl":"10.1111/hex.70029","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;Divided narratives pose long-standing difficulties in physician and patient communication. In decision-making on cancer treatment, divided narratives between physicians and patients hinder mutual understanding and agreement over the illness and its treatment. For effective decision-making on treatments, it is necessary to investigate the similarities and differences in these divided narratives.&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;This study adopted a qualitative research design of narrative inquiry to examine the data, which included interviews with 32 cancer patients and 16 paired physicians in two hospitals in China. Data analysis was conducted using grounded theory to generate findings.&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;Both physicians and patients were concerned about goals and obstacles to their decision-making on cancer treatment. Four common aspects of goal setting were identified from the divided narratives: decision pools, treatment goals, identity practice and preferred identity. Four common obstacles were identified: pains and trust, communication gap, financial issues and complex family. However, the meanings attached to these eight aspects differed between physicians and patients.&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;Cancer treatment decision-making is an encounter of the scientific world and lifeworld. A divided narrative approach can identify the similarities and differences in the decision-making on cancer treatment between physicians and patients. Physicians generally adopt a rational decision-making approach, whereas patients generally adopt a relational decision-making approach. Despite the common concerns in their goals and obstacles, physicians and patients differed in their contextualized interpretations, which demonstrates the physicians' and the patients' pursuit of preferred identities in decision-making. The results of this study provide a new perspective to treatment decision-making, emphasizing the importance of narrative integration in reaching mutual agreement.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Patient and Public Contribution&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;The findings were shared with 15 cancer patients and caregivers for feedback and advice in June 2024. This study was also presented at the international conferences of COMET (International and Interdisciplinary Conference on Communication, Medicine, and Ethics) and ICCH (International Conference on Communication in Hea","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 5","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-10-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11447199/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142367545","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}