Health Expectations最新文献

{"title":"The Role of Self-Collection in Optimising Cervical Screening for People With Intellectual Disability: A Multi Perspective Qualitative Study.","authors":"Lauren Winkler, Rosalie Power, Kimberley R Allison, Iva Strnadová, Allison Carter, Jane Ussher, Heather Jolly, Caroline Basckin, Sally Sweeney, Julie Loblinzk, Deborah Bateson","doi":"10.1111/hex.70920","DOIUrl":"https://doi.org/10.1111/hex.70920","url":null,"abstract":"<p><strong>Background: </strong>Evidence on whether self-collection addresses inequities in cervical screening participation for people with intellectual disability is limited. This study explored how self-collection is understood by people with intellectual disability and those in their support and healthcare networks and factors that support or hinder access.</p><p><strong>Methods: </strong>Semi-structured interviews were undertaken with four participant groups in New South Wales. This analysis reports on participants who discussed self-collection (n = 59) within a broader interview study (N = 66): people with intellectual disability (n = 9); family members and support people (n = 12); managers/leaders in disability organisations and private disability services (n = 19) and healthcare professionals (n = 19). Interviews used trauma-informed and accessible methods and were analysed using reflexive thematic analysis within a co-production framework.</p><p><strong>Results: </strong>Three themes captured participants' perspectives: (1) Reclaiming bodily autonomy: self-collection restored decision-making power by allowing people to collect their own vaginal sample or choose and guide a trusted healthcare professional to assist (2) Safety, trust, and freedom from harm: Self-collection was perceived as less invasive than a speculum examination and supported safer participation for those with healthcare anxiety or trauma (3) Structural inequities and ableist gatekeeping: Limited confidence with self-sampling, ableist assumptions, clinician-centred pathways, and uncertainty around support roles constrained access.</p><p><strong>Conclusions: </strong>Self-collection offers important opportunities to improve cervical screening participation for people with intellectual disability but requires multisectoral reforms including accessible sexual and reproductive health education and screening information informed by lived experience, trauma-informed and rights-based training across health and disability workforces and alternative screening models for safer home-based self-collection. These changes are essential to realise the reproductive autonomy and safety of people with intellectual disability and ensure meaningful progress towards equitable cervical cancer elimination.</p><p><strong>Patient or public contribution: </strong>People with intellectual disability were involved throughout the study as co-researchers, advisors, and active research participants. An Advisory Group including two members with intellectual disability, with support from their designated support person, informed the study design, recruitment strategies, accessible methods, and interpretation of findings, with pre- and post-meeting support to ensure meaningful and safe participation. The study adhered to principles of the inclusive research framework, 'Doing Research Inclusively: Guidelines for Co-Producing Research with People with Disability' whereby all study materials, consent proces","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13696019/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149277303","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":"Menopause Literacy Gaps Across Individual, Healthcare and Societal Levels: A Qualitative Study of Women's Experiences and Healthcare Providers' Perspectives.","authors":"Najmeh Pourshahrokhi, Jamileh Farokhzadian, Myra S Hunter, Saeedeh Azaraeen, Leila Ahmadian","doi":"10.1111/hex.70938","DOIUrl":"https://doi.org/10.1111/hex.70938","url":null,"abstract":"<p><strong>Background: </strong>Menopause is a major life transition that can affect women's physical, psychological, cognitive, sexual and social well-being. Despite the availability of evidence-based interventions, many women remain insufficiently informed and experience difficulties accessing reliable information and appropriate support.</p><p><strong>Objectives: </strong>To explore menopause-related information needs and challenges from the perspectives of menopausal women and healthcare professionals and to identify individual, healthcare-related and societal factors influencing menopause literacy.</p><p><strong>Design: </strong>A qualitative study informed by a constructivist paradigm was conducted using semi-structured interviews and conventional qualitative content analysis.</p><p><strong>Methods: </strong>Twenty-two peri- and postmenopausal women and 10 healthcare professionals were purposively recruited from healthcare settings in Southern Iran. Data were collected until data saturation was achieved, defined as the point at which no new codes or categories emerged from successive interviews. Interview transcripts were analysed using conventional qualitative content analysis following the approach of Graneheim and Lundman. Trustworthiness was enhanced through prolonged engagement, member checking, peer debriefing and established criteria for qualitative research.</p><p><strong>Results: </strong>Three interrelated themes were identified: understanding and accepting menopause, menopause management, and challenges of transition. Women described menopause as an unexpected and multidimensional transition affecting physical, psychological, cognitive, sexual, social and occupational well-being. Both women and healthcare professionals identified substantial gaps in menopause literacy and emphasised the need for timely education, evidence-based information and supportive healthcare. Symptom management strategies, lifestyle modification, family and peer support, and access to reliable information were perceived as important facilitators, whereas limited awareness, menopause-related stigma, insufficient provider engagement and difficulty identifying trustworthy information were reported as major barriers.</p><p><strong>Conclusions: </strong>Menopause literacy is shaped by interacting individual, healthcare and societal factors. Strengthening evidence-based menopause education, improving healthcare support and developing accessible, person-centred information resources may enhance women's ability to navigate the menopausal transition and inform the design of future educational and digital health interventions.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13693505/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149277382","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":"Empowering Parent Carers of Children With Neurodisability in Healthcare Settings: Co-Producing a Theory of Change for Intervention Development.","authors":"Jim Reeder, Saira Minhas, Erica Breuer, Jane R Smith, Sally Kendall, Christopher Morris","doi":"10.1111/hex.70871","DOIUrl":"10.1111/hex.70871","url":null,"abstract":"<p><strong>Background: </strong>Parent carers of children with neurodisability are empowered when they have greater agency and influence over decisions about their child's care. When parent carers are empowered, it benefits both them and their children. Building on previous work, this study aimed to co-produce a Theory of Change (ToC) to inform the development of a new parent carer empowerment intervention.</p><p><strong>Methods: </strong>We convened a group of nine participants (four parent carers, three service providers, one service manager, one service commissioner) to co-produce our ToC. The participatory process consisted of structured workshops co-facilitated by a researcher and a parent carer partner, with iterative phases of data analysis. Analysis drew on behavioural science to develop detailed ToC maps and a provisional intervention plan.</p><p><strong>Findings: </strong>Twenty-nine short-term, thirteen medium-term and seven long-term outcomes were identified and incorporated into causal pathways of the ToC. The group prioritised two medium-term outcomes informing the focus of the intervention: (1) Effective two-way information sharing and (2) trusting relationships between service providers and parent carers. Following integration of a behavioural analysis, the new intervention targets change in seven service provider behaviours.</p><p><strong>Conclusions: </strong>Our co-produced, theory and evidenced-based intervention targets change in service provider behaviour by focusing on self-awareness and critical reflection, specifically related to how information is shared/managed and how interactions with parent carers are framed and performed.</p><p><strong>Patient/public contribution: </strong>Our project team includes a group of parent carer research partners. Members of the group have been involved in planning and design, facilitation of workshops and dissemination of findings.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":"e70871"},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13556309/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148914405","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":"Refusal Rates in Different Types of Deceased Donors.","authors":"Chiara Lazzeri, Adriano Peris","doi":"10.1111/hex.70910","DOIUrl":"10.1111/hex.70910","url":null,"abstract":"","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":"e70910"},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13639528/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149118878","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":"Patient and Public Involvement and Engagement in Pediatric Health Research: A Systematic Review","authors":"Veronika Stadler,&nbsp;Rebeca Mozun,&nbsp;Jannik Strohm,&nbsp;SwissPedHealth consortium,&nbsp;Chloé Caruso,&nbsp;Klara M. Posfay-Barbe,&nbsp;Cornelia Hagmann","doi":"10.1111/hex.70862","DOIUrl":"10.1111/hex.70862","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;Patient and public involvement and engagement (PPIE) can increase the relevance and efficiency of research projects. An overview of PPIE approaches and implementation in pediatric research studies is needed to facilitate learning from others' experiences.&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;We aimed to systematically review practices in PPIE across all pediatric health research disciplines regarding characteristics and recruitment of PPIE participants, timepoints and methods used for PPIE, levels of involvement, benefits and barriers of PPIE.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Search Strategy&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;We searched Pubmed, EMBASE, Cochrane and PsycInfo using a comprehensive set of terms based on the concepts ‘Patient and Public Involvement,’ ‘Health Research’ and ‘Pediatrics.’&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Inclusion Criteria&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;We included original research articles describing PPIE implementation in pediatric health research published in English or German between 01/2003–10/2024.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Data Extraction and Synthesis&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Data was extracted using predefined categories and synthesized by narrative summary and thematic synthesis. PPIE reporting quality was assessed using the GRIPP2 short form checklist.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Main Results&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Out of 1910 references, we included 37 original research articles, representing 35 studies. PPIE participants were mostly children, adolescents or caregivers involved in all research stages, especially in study design (89%) and recruitment (51%). Key positive impacts of PPIE on research included enhanced recruitment and retention rates and personal benefits for PPIE participants. Barriers to PPIE were financial and time resources required and challenges in recruiting representative PPIE participants. The level of involvement and PPIE reporting quality varied highly between studies.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Discussion&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Common benefits and barriers of PPIE exist across pediatric research disciplines. Reporting quality varied highly between studies.&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;PPIE is valuable in p","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-09-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13543670/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148893140","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":"Perceptions, Barriers and Pathways Forward: A Scoping Review of CALD Participation in Australian Clinical Trials","authors":"Thy Vuong,&nbsp;Manju Daniel,&nbsp;Krishna Lambert","doi":"10.1111/hex.70804","DOIUrl":"10.1111/hex.70804","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;Equitable participation in clinical trials is essential for ensuring that research evidence is scientifically robust, ethically just and representative of the populations it is intended to serve. In Australia, culturally and linguistically diverse (CALD) populations remain underrepresented in clinical trials despite increasing national policy attention to equity and inclusion. This review synthesized empirical evidence and Australian policy and practice documents to examine factors influencing CALD participation in clinical trials.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Objectives&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;To synthesize evidence on CALD attitudes, perceptions and factors influencing clinical trial participation in Australia; examine reported barriers and facilitators; describe how CALD populations have been conceptualized across the literature; and identify implications for research, practice and policy.&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 scoping review was conducted in accordance with Joanna Briggs Institute guidance and reported using PRISMA‑ScR. Five electronic databases were searched for English‑language primary studies published between 2006 and June 2025. Eligible studies examined CALD adults' perceptions, experiences or participation in Australian clinical trials. A targeted synthesis of Australian grey literature was undertaken to contextualize empirical findings within the national policy and practice landscape. Data were charted and synthesized narratively.&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;Eight empirical studies and seven Australian policy and practice documents were included. Five themes emerged from the empirical literature: (1) willingness to participate exists but opportunity is structurally constrained; (2) language and health literacy are pervasive barriers; (3) cultural values, family involvement and trust shape participation decision-making; (4) system-level practices limit equity monitoring and inclusion; and (5) inconsistent implementation of feasible facilitators. Policy documents increasingly recognized these same structural determinants and proposed system-level strategies to improve equitable participation; however, nationally consistent implementation and accountability mechanisms remain limited.&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;Clinical trial participation among CALD populations should be understood as a dynamic, multi-level decision-making process rather than a singl","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-09-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13543165/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148893215","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":"Important Health Care Components to Promote Sexual and Reproductive Health Among Young Women With Attention-Deficit/Hyperactivity Disorder: A Delphi Study","authors":"Karin Wallin,&nbsp;Lena Hanberger,&nbsp;Inger Wallin-Lundell,&nbsp;Siw Alehagen,&nbsp;Sally Hultsjö","doi":"10.1111/hex.70856","DOIUrl":"10.1111/hex.70856","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction and Objectives</h3>\u0000 \u0000 <p>Living with attention-deficit/hyperactivity disorder (ADHD) may negatively affect young women's sexual and reproductive health (SRH) if they lack adequate support. To promote positive and safe sexual and relational experiences, this study aimed to identify important components within health care settings that can promote SRH among young women with ADHD.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>An expert panel of young women (aged 19–29 years) with ADHD and health care professionals (HCPs) working in SRH counselling or psychiatric clinics rated the importance of statements on the topic across two survey rounds.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Consensus was reached on about two-thirds of the statements. High agreement emphasized the need for HCP training on ADHD and SRH in both psychiatric clinics and SRH clinics, including knowledge of hormonal influences. Important components also included routine inquiries about sexuality and relationships, and sexual violence; accessible health care; inclusive SRH information that acknowledges variation of symptoms and functional abilities; discussion groups on sexuality and relationships for young women; and integrating SRH in existing psychoeducation.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>SRH among young women with ADHD may benefit from several health care efforts delivered across both sexual health and psychiatric services, including accessible care tailored to their needs, structured clinical routines and appropriate training in SRH and ADHD for HCPs.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient and Public Contribution</h3>\u0000 \u0000 <p>Young women with experience of living with ADHD and HCPs with varied clinical expertise participated in the Delphi study. Women with ADHD were involved as co-researchers in the survey development and in the pilot-testing.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-09-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13538955/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148882817","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":"Bridging Lived and Expert Experience: A Qualitative Study Exploring Lived-Experience Experts' and Researchers' Experiences of Public Engagement in Cancer Research","authors":"Piotr Teodorowski,&nbsp;Beth J. Maclin,&nbsp;Joi Miner,&nbsp;Jonathan B. Green,&nbsp;Daniel G. Garza,&nbsp;Marcus Arana,&nbsp;Edward Duncan,&nbsp;Jonine Figueroa,&nbsp;Sarah S. Jackson,&nbsp;Liz Forbat","doi":"10.1111/hex.70848","DOIUrl":"10.1111/hex.70848","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Public engagement has the potential to make research more impactful, and it has increased in recent years in cancer research. Yet, there is limited understanding of how this process of bringing lived experience into research works, and of what leads to tokenistic and non-tokenistic engagement.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Aims and Objectives</h3>\u0000 \u0000 <p>To explore public engagement in cancer research in the United States from the perspective of both lived-experience experts and researchers.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A qualitative study consisting of interviews with 15 lived-experience experts engaged in cancer research and 15 cancer researchers. Data were analysed using reflexive thematic analysis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Findings are captured in four themes shared by both participant groups and mapped onto Jürgen Habermas's theory of communicative action, which helped explain the engagement process. First, public engagement was invaluable to research, but also personally and professionally. Second, underlying foundations and principles underpinned the non-tokenistic engagement process. Third, engagement led to the creation of a partnership between cancer researchers and lived-experience experts. Fourth, engagement was about creating and enriching culture within a research institution and in the community.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The study provided a better understanding of public engagement in cancer research. Habermas's communicative action theory offered an analytical framework to elicit the importance of mutual understanding in developing common ground between lived-experience experts and researchers. It highlighted that tensions between lived-experience experts and researchers, choosing not to act on feedback, and limited institutional support can lead to tokenistic engagement.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>Four Community Advisory Board members contributed to this study from design through dissemination. They co-developed topic guides, co-analysed data, co-wrote this paper and are named as co-authors.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-08-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13527529/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148868059","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":"Refining the NEED (Needs Examination, Evaluation and Dissemination) Methods for Use in Psychotic Disorders in Belgium: Lessons From the Design Phase","authors":"Zilke Claessens,&nbsp;Io Wens,&nbsp;Emma Olieslaeger,&nbsp;Ruud Van Winkel,&nbsp;Pierre Oswald,&nbsp;Margaux Sageot,&nbsp;Vicky Steyfkens,&nbsp;Rani Claerman,&nbsp;Robby De Pauw,&nbsp;Laurence Kohn,&nbsp;Caroline Obyn,&nbsp;Julie Paradis,&nbsp;Claudia Schönborn,&nbsp;Irina Cleemput,&nbsp;Charline Maertens de Noordhout,&nbsp;Isabelle Huys","doi":"10.1111/hex.70724","DOIUrl":"10.1111/hex.70724","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;The NEED (Needs Examination, Evaluation and Dissemination) framework provides a structured, multidimensional approach to assess unmet health-related needs at both patient and societal levels, using predefined criteria, indicators and standardised data collection tools (e.g., questionnaire and interview guide). This paper outlines the methodological adaptations and considerations required when applying the NEED framework to psychotic disorders (PD). PD encompass a spectrum of conditions, including schizophrenia and schizoaffective disorder, and are characterised by overlapping symptom clusters and inconsistencies in communication of diagnoses in patient contact, which complicates research design and the delineation of study populations.&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;In preparation for a NEED study in PD, a literature review and expert consultations informed the inclusion and exclusion criteria, choice of diagnostic terminology, refinement of data collection tools and the development of a recruitment strategy. The adapted tools were subsequently piloted in four interviews to assess clarity and feasibility.&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;Individuals with PD face distinct challenges for research participation. Stigma surrounding diagnostic labels contributes to a gap between clinical diagnosis and self-identification, while limited illness insight, cognitive impairments (e.g., reduced attention span), and distrust of research further complicate participation. As the NEED methodology relies on self-identification and self-report, these characteristics required several adaptations. First, inclusion criteria were broadened from the initial intention of focusing on schizophrenia to PD to accommodate diagnostic uncertainty and variation in illness insight, while non-stigmatising terminology was adopted for recruitment materials and survey instruments. Second, the questionnaire and interview guide were adapted to account for diagnostic variability, risk of non-differential misclassification and the need for clear, sensitive wording. Third, the recruitment strategy incorporated materials that were as minimally stigmatising as possible, a wide range of actors and channels, on-site support by researchers, and the option for proxy completion by legal representatives to enable inclusion of individuals with severe impairments.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Discussion&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;This study highlights methodological challenges specific to conducting needs assessments in PD and describes the adaptati","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-08-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13527729/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148867991","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":"Experiential and Medical Knowledge of Shared Decision-Making: Exploring Clinician and Service User Perspectives in NHS Community Mental Health Services","authors":"Karishma Jivraj,&nbsp;Iris Gault,&nbsp;Mary Chambers","doi":"10.1111/hex.70828","DOIUrl":"10.1111/hex.70828","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;A fundamental barrier to effective recovery outcomes for psychosis, is the lack of involvement of service users (SUs) in decisions made about their care. Despite policy recommendations, implementation of shared decision-making (SDM) is inconsistent, under-reported in mental health practice and thus requires further attention. This research aimed to explore SU and clinician experiences of SDM in community mental health care.&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;Qualitative data from a cross-sectional mixed-method study is presented. A purposive sample of 18 participants (10 SUs experiencing psychosis, 8 psychiatrists) from one NHS community mental health service, took part in semi-structured interviews which underwent reflexive thematic analysis.&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;Participants acknowledged SDM as integral to consultations, with overlaps and disparities in SU and clinician perceptions of the reality in practice. Three themes are reported: (1) knowledge and capacity for SDM, (2) relational dynamics; power and communication in SDM and (3) evaluating the realities of SDM in practice. SUs reported they needed to be in the right frame of mind while clinicians acknowledged they were struggling and it wasn't easy to take medication. SUs also wanted to be more engaged in decisions about their care, involving others in the process, with further clarification about options, and alluded to power asymmetry. Clinicians and SUs stressed that structural pressures (concerning time and resources) limited explanation of treatment options and clinicians reflected on stigma they faced. They questioned if SUs experienced the service they thought they were providing.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Discussion&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;SU and clinician perceptions often overlapped but at times misaligned, suggesting inconsistency in practicing SDM. Implications for practitioners and policy makers include revisiting how SDM is used in practice, with adequate structural and resource provision, potentially involving others to bridge the gap between experiential and medical knowledge. Limitations are reflected on, however, this research emphasises the importance of consistent use of SDM in community mental health.&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;Service users, academics, and clinicians from the Centre for Public Engagement, Kingston University participated in the research design, devel","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":""},"PeriodicalIF":3.4,"publicationDate":"2026-08-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13528446/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148868057","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}