Health Expectations最新文献

{"title":"One of the Many Things That I've Learned on This Journey…: A Co-operative, Narrative Inquiry With Two Care Partners of Spouses With Young Onset Dementia.","authors":"Elissa Burton, Vicki Barry, Bronte Parkin, Deborah Hersh","doi":"10.1111/hex.70827","DOIUrl":"10.1111/hex.70827","url":null,"abstract":"<p><strong>Introduction: </strong>Young-onset dementia (YOD) is a term used when people demonstrate symptoms or are diagnosed with dementia before 65 years of age. YOD can be challenging to diagnose because health practitioners often do not initially consider dementia as the cause of someone's change in health or function in their 40 s, 50 s or even early 60 s. This can be the start of a complex journey for both the person living with YOD and their care partner. The aim of this study was to explore the journey for two care partners whose spouses were diagnosed with YOD.</p><p><strong>Methods: </strong>Co-operative, narrative inquiry, which is a collaborative, participatory research approach was used. This enabled in-depth reporting of the experiences of the two care partners, who were also research partners and authors on this project.</p><p><strong>Results: </strong>The story is told through a timeline lens where both care partners' narratives described their journeys prior to diagnosis, diagnosis, life after diagnosis through to transitioning to a care home. Both care partners experienced long periods of uncertainty as initial changes became evident, followed by frustration with health professionals leading to delays in onward referral and diagnosis. Both found the change of role to be confronting and their care for their spouse with YOD to significantly impact on their finances, work, social lives and wellbeing. Both worked hard to maintain their spouses' dignity and quality of life. They became innovative problem-solvers and strong advocates. Both continue in advocacy roles at the local, state and national levels.</p><p><strong>Conclusion: </strong>Giving space to reflect on the stories of family care partners of people living with YOD is helpful in sensitising health professionals to the needs of their clients over time and highlighting the integral role of families in managing the condition.</p><p><strong>Patient or public contribution: </strong>Two lived-experience contributors, both care partners of people living (or having lived) with young onset dementia, were involved as research partners throughout the project. They reviewed and edited the ethics application (including project proposal) to ensure the proposed research and participant materials were acceptable and understandable to care partners. They each participated in an individual interview (after providing written consent as required by the local Human Research Ethics Committee), shared their lived experience to help interpret and contextualise the findings, and provided detailed feedback on drafts of the manuscript. They also contributed additional information to strengthen the implications for practice and have been included as named authors on the paper in recognition of their substantial contribution and partnership in the project.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":"e70827"},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13580810/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148983606","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":"Preparing for Delivery of Patient Falls Prevention Education in Hospitals: The Consumer Perspective.","authors":"Hazel Heng, Jacqueline Francis-Coad, Caroline Bulsara, Cheng Yen Loo, Meg E Morris, Adam Semciw, Catherine M Said, Stephen Peterson, Anne-Marie Hill","doi":"10.1111/hex.70878","DOIUrl":"10.1111/hex.70878","url":null,"abstract":"<p><strong>Background: </strong>Falls in hospital are a serious risk to older patients' recovery. Patient education programmes that provide falls prevention advice are recommended. Garnering the perspectives of older adults about implementing such programmes could improve how health professionals engage with hospital patients to educate them and increase patient enactment of falls prevention advice.</p><p><strong>Methods: </strong>Two forums, in two states of Australia, were conducted using a modified World Café methodology. Older consumers who had previous admissions to hospital shared their perspectives on three conversation topics: (i) delivery of a purpose-designed patient falls prevention education programme called Safe Recovery; (ii) ward-level support for programme delivery; and (iii) organisational-level support for the programme. Table notes were combined and analysed using inductive content analysis.</p><p><strong>Results: </strong>Older consumers who could communicate in English from Western Australia (n = 17) and Victoria (n = 16) participated in the forums. Their perspectives appeared to concur that implementation of the Safe Recovery Programme for falls prevention on hospital wards requires staff attention to the right timing for patients, personalisation of the education and multiple modes of delivery to optimise programme exposure. Consumers advised that ward-level support to remember and enact suitable strategies should be provided by staff, families, hospital volunteers and peers. They requested clear communication between staff that ensured they repeatedly and consistently reinforced patient participation and provided progress reports to patients on falls prevention. Organisations can support implementation by taking ownership for ensuring patients receive falls prevention education, endorse staff falls education training and allocate funding for programme sustainability. The group consensus was everyone can work together to prioritise falls prevention in hospitals.</p><p><strong>Conclusion: </strong>Older consumers expressed their enthusiasm to partner in planning how a patient falls prevention education programme is delivered on hospital wards. Consumer engagement can provide valuable stakeholder feedback about processes and resources required for delivery of patient falls prevention education, which may lead to successful delivery by hospitals.</p><p><strong>Patient or public contribution: </strong>The research team includes a consumer investigator (SP) who has provided feedback and input at all stages of the research, including project design, study procedures, data analysis and manuscript review. The education programme's original design and development was centred around patient and public involvement. The participants in this study who attended the world café forums were older people with lived experience of hospital admissions and caregivers of older people admitted to hospital.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":"e70878"},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13591224/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149012444","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":"Being 'The Only Consumer' - Exploring the Lived Experiences of Health Consumer Representatives in Australian Health System Involvement.","authors":"Hannah Fielder, Rebecca Kelly, Phoebe Griffin","doi":"10.1111/hex.70901","DOIUrl":"10.1111/hex.70901","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Introduction: &lt;/strong&gt;Health consumer representatives (HCRs) are increasingly expected to contribute to decision-making across the health system, including at the level of policy, strategy and system-wide governance. However, while HCR involvement is relatively well established at the direct-care and health service-level context, system level involvement remains underdeveloped and poorly understood as a distinct form of participation. In addition, and arguably because of this, HCR involvement at this level continues to face the persistent challenges, such as role confusion and tokenistic 'tick-a-box' engagement, despite increasing policy commitments. This study explores the lived experiences of HCRs in Australia to better understand how system-level involvement is experienced in practice.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;Thirteen HCRs from across Australia were purposively sampled and participated in semi-structured one-to-one interviews conducted via Zoom or telephone. Interviews were audio-recorded, transcribed and analysed iteratively using an interpretive phenomenological approach.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;Participants' experiences were captured by the prominent theme of being the 'only consumer', reflecting both the uniqueness of their role and expertise, but also the feeling of marginalisation they face. Two cross-cutting influences shaped this experience: power dynamics, including structural and interpersonal inequities and relational factors, particularly allyship and supportive relationships. One key element of the consumer experience was the process of becoming an expert as they gained knowledge of systems and confidence in the value of the consumer perspective. Another was finding meaning in their work both through everyday interactions and long-term contributions to systems change.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusion: &lt;/strong&gt;The quality of HCR involvement in system-level spaces is shaped not only by governance structures, organisational processes and policy commitments, but also by power dynamics, relationships and the extent to which lived experience is recognised as unique expertise. Underpinning this, the ability for HCRs to find meaning in their roles and in genuine partnerships is what moves their involvement beyond tokenism into supported and valued participation. These findings highlight that meaningful system-level HCR involvement depends not only on having consumers 'in the room', but on recognising their expertise, sharing power, building respectful relationships, and designing structures that allow their contributions to influence decisions.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Patient or public contribution: &lt;/strong&gt;Investigator HF holds the dual role of researcher and HCR peak body worker and has personal lived experience of being an HCR at the health-system level. The inception of the research question was grounded in this lived experience and informed by regular input from two highly experienced HCR peers. Study participants contrib","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":"e70901"},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13636653/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149118865","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":"Can Care Coordination for Multiple Long-Term Conditions Be Meaningfully Measured Using Routine Data? A Multi-Stage Consultation.","authors":"Krystal Warmoth, Nicola Small, Vanessa Davey, Patrick Burch, Alex Thompson, Jo Butterworth, Jonathan Gibb, Easter Joury, Steve Callaghan, Felicity Dewhurst","doi":"10.1111/hex.70894","DOIUrl":"10.1111/hex.70894","url":null,"abstract":"<p><strong>Background: </strong>Care coordination is essential for improving healthcare experiences and outcomes for people living with multiple long-term conditions (MLTC), yet it remains challenging to measure care coordination in ways that are both meaningful and feasible at scale. Routine electronic health record (EHR) data offer potential for system-wide measurement, but it is unclear whether such measures reflect what matters to patients, carers, and those delivering care.</p><p><strong>Methods: </strong>We undertook a multi-stage, collaborative consultation process to examine whether care coordination in MLTC can be meaningfully measured using routine data. Public contributors (n = 18), professional contributors (n = 23), researchers (n = 15) and data experts (n = 10) participated in structured discussions, co-developed appraisal criteria (including relevance to lived experience and feasibility in EHR data), and assessed measures identified through a linked systematic review. A consensus survey evaluated the appropriateness of shortlisted measures.</p><p><strong>Results: </strong>Participants identified priorities including teamwork, communication, continuity, care management, and accountability. Appraisal criteria balanced patient relevance with feasibility in routine data. While a feasible shortlist of measures was identified, findings showed only qualified support for routine data-derived indicators. Continuity measures were most strongly endorsed but widely recognised as proxies capturing observable activity rather than the relational, experiential, and cross-sector dimensions central to coordinated care. Concerns were raised regarding data quality, conceptual validity, and the risk of incomplete or misleading representations.</p><p><strong>Conclusions: </strong>Routine data-derived measures of care coordination in MLTC hold clear potential but are inherently limited. The findings support a conditional position: such measures can provide useful system-level signals, but only if interpreted cautiously, supported by robust data infrastructure, and complemented by patient-reported insights. Advancing measurement will require integrated approaches that better capture what matters to patients and carers.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":"e70894"},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13633699/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149118906","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":"Variability in Stroke Journeys: A Qualitative Study of Experiences of Persons With Stroke.","authors":"Asma Sabri, Heidi Dombestein, Peter Dieckmann, Stephen J M Sollid, Karina Aase","doi":"10.1111/hex.70902","DOIUrl":"10.1111/hex.70902","url":null,"abstract":"<p><strong>Background: </strong>Stroke recovery is highly individual and often involves multiple transitions across healthcare settings. While standardised stroke pathways aim to improve quality of care, less is known about how persons with stroke experience person-centred practice throughout their stroke journeys.</p><p><strong>Aim: </strong>To explore how persons with stroke experience person-centred practice throughout their stroke journeys.</p><p><strong>Methods: </strong>A qualitative study was conducted with persons who had experienced stroke in Norway. Data were collected through twelve semi-structured interviews and one written response. Reflexive thematic analysis, narrative construction and patient journey mapping were used to explore their experiences across the first 3 months post-stroke onset.</p><p><strong>Results: </strong>Participants' stroke journeys varied considerably in symptom presentation, needs and care experiences. Journey mapping visualised the differences in stroke journeys, healthcare interactions and experiences. Four themes were identified from the cross-interview analysis: (1) Professional competence and relational care, (2) When the stroke pathway ends, the person's journey continues, (3) Standardised care versus individualised needs and (4) Participation across the journey. Experiences were generally positive in the hyperacute and acute phases and more variable following discharge, with participants describing limited follow-up and access to rehabilitation, as well as unmet holistic needs.</p><p><strong>Conclusions: </strong>Persons with stroke experiences varied considerably throughout their stroke journeys, with discharge to home regarded as a stressful, insufficiently supported phase of care. Supporting continuity and individualised approaches to care should better meet the diverse needs of persons with stroke.</p><p><strong>Patient and public contribution: </strong>A user group consisting of persons with stroke and informal caregivers was recruited through a Norwegian stroke survivors association to be involved throughout the study. The user group consisted of seven persons, four females and three males, with ages ranging from their 40s to their 80s. The group included persons with stroke, persons with severe stroke, a person with aphasia, informal caregivers and the leader of the stroke association, who is also an informal caregiver. Two meetings, text communications and individual informal conversations took place with the user group to present and discuss the study design and obtain feedback on the interview content, format and procedures. The user group also supported participant recruitment. These participants took part in the interviews that form the basis of this study. Informal caregiver interviews were conducted in parallel as part of a related study. Preliminary findings were presented at the stroke survivors association's conference, and feedback was obtained.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":"e70902"},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13648015/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149139484","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":"Understanding Food Insecurity in Westminster, UK: A Community-Informed Systems Thinking Approach.","authors":"Charan Bijlani, Jessica Ellis, Birgit Kopainsky, Cornelia Junghans, Eszter P Vamos, Paraskevi Seferidi","doi":"10.1111/hex.70914","DOIUrl":"10.1111/hex.70914","url":null,"abstract":"<p><strong>Introduction: </strong>Food insecurity is increasing in the United Kingdom and is a growing public health concern. In Westminster, a highly diverse London borough, rates continue to rise in the most deprived areas, such as the Church Street ward, despite increasing food support and local policies.</p><p><strong>Methods: </strong>This study used a community-informed systems thinking approach to understand the local dynamics. 26 stakeholders from 6 local services participated in group model-building (GMB) workshops and interviews to provide insight into how services and policies interact with the structural drivers of food insecurity.</p><p><strong>Results: </strong>We developed six causal loop diagrams (CLDs) to map interactions between support services, the food environment, local policies, and the drivers of food insecurity. Four system archetypes were identified: Fixes that Fail, Shifting the Burden, Limits to Success, and Success to the Successful, which explain how well-intentioned policies and interventions can produce unintended consequences that reinforce food insecurity. While identified in Church Street, these archetypes reflect recurring patterns of behaviour that may operate in other highly deprived and ethnically diverse urban settings. The CLDs show how charities, support services, and local communities work together to support residents, but are constrained by short-term fixes, limited funding, competing priorities, and the local food environment. This results in interventions that focus on addressing immediate needs, rather than the structural drivers such as poverty. Through our evaluation of the GMB approach, participants reported that the workshops were an effective way to share experiences and improve their understanding of food insecurity.</p><p><strong>Conclusion: </strong>By addressing the feedback mechanisms driving food insecurity and using systems archetypes to identify appropriate solutions, this research provides insights and policy recommendations to create more effective policies across the UK.</p><p><strong>Patient or public contribution: </strong>This article is part of a wider PhD project which involves close engagement and collaboration with public partners. For this article, public partner Jessica Ellis contributed extensively to the design and delivery of the workshops used in this research. She provided support in planning the workshop, designing the evaluation survey, developing workshop materials, co-facilitating a workshop, interpreting the results, and making contributions to the final manuscript.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":"e70914"},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13651544/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149139513","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":"From Awareness to Action: Co-Designing Culturally Safe and Equitable Rehabilitation in Canada - Protocol for the Two-Phase Ireach Qualitative Study.","authors":"Nora Bakaa, Lisandra Almeida de Oliveira, Luciana Macedo, Pierre Côté, Fred Toy, Jasdeep Dhir, Yaad Shergill, Astrid DeSouza, Jennifer Ward, Janny Mathieu, Maxi Miciak, André Bussières, Tara Packham, Victor E Ezeugwu, Jessica J Wong","doi":"10.1111/hex.70874","DOIUrl":"10.1111/hex.70874","url":null,"abstract":"<p><strong>Background: </strong>Inequities in access, engagement, and outcomes persist across outpatient rehabilitation services in Canada, disproportionately affecting Indigenous Peoples, newcomers and refugees, gender- and sexually-diverse individuals, and people with lower income. Although rehabilitation professionals report strong awareness of equity, diversity, inclusion, and cultural safety principles, a persistent gap remains between knowledge and day-to-day clinical practice. Existing resources largely focus on education without providing practical, clinic-level tools or aligned patient-facing supports to enable sustained practice change.</p><p><strong>Objective: </strong>The Inclusive Rehabilitation Equity Assessment and Consensus Hub (iREACH) study aims to co-design a national, evidence-informed roadmap of prioritised, actionable strategies to enhance cultural safety and equity in outpatient rehabilitation, including physiotherapy, occupational therapy, and chiropractic settings across Canada.</p><p><strong>Methods: </strong>The iREACH study will use a two-phase, sequential co-design approach. Phase 1 will employ qualitative methods guided by Interpretive Description, including semi-structured interviews, to explore patients' experiences of cultural safety and unsafety in rehabilitation care. Participants will be purposefully sampled to reflect diversity across social identities and locations, geographic regions, and provider types. Data will be analysed using inductive Reflexive Thematic Analysis within the overarching framework of Interpretative Description. Phase 2 will involve a national co-design workshop with an intersectional panel of patients, clinicians, and system leaders. Findings from Phase 1 and prior research will be collaboratively translated into prioritised strategies and practical clinician- and patient-facing resources to support culturally safe and equitable rehabilitation care.</p><p><strong>Expected outcomes: </strong>The primary outcome will be a bilingual (English and French) co-designed Shared Blueprint comprising prioritised, actionable strategies for clinicians, organisations, and health system leaders, together with complementary patient-facing resources to support culturally safe and equitable rehabilitation care across Canada. By integrating lived experience, clinical perspectives, and system leadership, iREACH aims to bridge the gap between cultural safety intent and implementation, supporting more equitable, accessible, and patient-centred rehabilitation care across Canada.</p><p><strong>Patient or public contribution: </strong>Patient partner has been actively involved in the study design, including development of the research questions, interview guide, and co-design approach. They will remain involved throughout the study as member of the research team contributing to data interpretation and the co-development of study outputs.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":"e70874"},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13583488/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148983066","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":"Comment on \"Care Coordination Experiences of Whole Families Caring for Children With Medical Complexity in Rural Areas\".","authors":"Anneliese de Groot, Karen Hutchinson, Amy Hickman, Raghu Lingam, Yvonne Zurynski","doi":"10.1111/hex.70916","DOIUrl":"10.1111/hex.70916","url":null,"abstract":"","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":"e70916"},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13647491/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149139539","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 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":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;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.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;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.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;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.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusions: &lt;/strong&gt;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.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Patient or public contribution: &lt;/strong&gt;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}