Health Expectations最新文献

{"title":"Access to Supportive Care Among Australian Cancer Carers: Experiences of Priority Populations.","authors":"Stephanie P Cowdery, Patricia M Livingston, Thach Tran, Antonina Mikocka-Walus, Anna Ugalde, Eva Yuen, Hannah Jongebloed, Natalie Winter, Nicole Kiss, Nikki McCaffrey, Norah Refahi, Victoria M White","doi":"10.1111/hex.70830","DOIUrl":"10.1111/hex.70830","url":null,"abstract":"<p><strong>Background: </strong>Informal carers are essential in supporting people with cancer yet often experience unmet supportive care needs.</p><p><strong>Aims: </strong>The aim of this study was to examine (a) access to supportive care services (b) perceived barriers to accessing services, and (c) the potential influence of carer health literacy on access and barriers to supportive care among carers across three priority population groups (rural-remote-dwelling, LGBTIQA+ and culturally and linguistically diverse (CALD)).</p><p><strong>Methods: </strong>Cross-sectional online survey of Australian adult cancer carers. Supportive care use, access barriers, and health literacy (Health Literacy of Caregivers Scale - Cancer (HLSC-C)) were assessed. Logistic regression examined differences across priority groups, and mediation analyses explored the role of health literacy.</p><p><strong>Results: </strong>Among 1154 carers, 61.9% accessed some supportive care (46.7% formal services), yet 86.6% reported at least one barrier, with 71.0% reporting two or more. Common barriers were time constraints, service availability, and long wait times. Compared to non-priority population carers, rural/remote carers had higher odds of reporting limited local availability and services not available when needed (aOR = 5.08 for both). CALD carers had higher odds of reporting a barrier (aOR = 1.81), including long wait times, cost, and lack of culturally appropriate services (aOR = 33.03). Health literacy significantly mediated the association between CALD status and reported barriers.</p><p><strong>Conclusions: </strong>Cancer carers have limited access to supportive care and face systemic barriers. Inequities remain, particularly for carers from rural/remote areas and those from CALD backgrounds. To improve equity, there is a need for co-designed, accessible interventions that address health literacy and the diverse geographic, cultural, and linguistic needs of carers.</p><p><strong>Patient or public contribution: </strong>People with lived experience of cancer caregiving were included on this study's advisory committee. In this role, their expertise informed the study design, including the development of the questionnaire, the Participant Information and Consent Form (PICF), and recruitment processes. They were also invited to contribute to data interpretation and the preparation of this manuscript. The lead consumer representative (NR) is listed as a co-author on this manuscript.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":"e70830"},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13559169/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148921906","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":"Validation of a Patient-Created, Patient-Reported Experience Measure for Inflammatory Bowel Disease in the United Kingdom.","authors":"Zoe Guy, Daniel Hind, Nikki Totton, Elena Sheldon, Naseeb Ezaydi, Matt Bursnall, Alan Lobo","doi":"10.1111/hex.70814","DOIUrl":"10.1111/hex.70814","url":null,"abstract":"<p><strong>Introduction: </strong>Inflammatory bowel disease (IBD) significantly impacts quality of life and has high healthcare contact. Ensuring that patients are experiencing the best care is therefore essential and has been the focus of many quality improvement initiatives. To support this, in collaboration with patients, we developed a patient-reported experience measure for IBD (IBD-PREM) for use in a UK context. This article refers to the validation of this patient-developed measure to ensure it is valid and reliable.</p><p><strong>Methods: </strong>Using data from the AWARE-IBD study, 287 participants provided data between November 2021 and November 2024. The IBD-PREM as well as the IBD-Control questionnaire was collected at 3-month intervals as well as 2 weeks post baseline. Validation was completed through testing the following aspects: acceptability (response rate and missing data rates), reliability (internal consistency and test-retest reliability), validity (construct and structural validity using factor analysis) and responsiveness (ceiling/floor effects and smallest detectable difference).</p><p><strong>Results: </strong>High response rates and low missing data demonstrated acceptability of the IBD-PREM. There was also good test-retest reliability (ICC = 0.88). Low ceiling and floor effects demonstrate suitable responsiveness as did the ability to differentiate between patients with active and inactive disease (effect size = 0.62). The confirmatory factor analysis suggested the current domain structure (three domains) is not optimum and factor loadings indicated some potentially redundant items, which is supported by the high internal consistency (α = 0.97).</p><p><strong>Conclusions: </strong>The patient-developed IBD-PREM is a tool that can be used as a method for assessing the healthcare experiences of IBD patients in the United Kingdom. Superior psychometric properties were found compared to measures developed through traditional researcher-led approaches suggesting the benefit of involving patients early in the methodological process. Further refinement in terms of item reduction and domain restructure should be implemented to optimise the PREM as well as external validity to other contexts.</p><p><strong>Patient or public contribution: </strong>Patients and members of the public were engaged from an early stage in the development of the PREM, contributing directly to the design and content of the IBD-PREM. This article goes on to validate this patient-created measure with input from a patient representative.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":"e70814"},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13559181/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148921899","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":"'It Got Me Thinking About My Home Environment but Was Also Great Fun': Using Experiential Methods in Public Involvement Workshops on Indoor Air Pollution in Later Life.","authors":"Jennifer Liddle, Gemma F Spiers, Angela Wearn, Katie H Thomson","doi":"10.1111/hex.70869","DOIUrl":"10.1111/hex.70869","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;Public involvement in health research is increasingly recognised as essential, yet involving older people, particularly care home residents, remains challenging. Creative and arts-based methods have been proposed as a means of improving accessibility and engagement, but tend to be selected for their perceived general appeal rather than their connection to the research topic. This paper describes an experiential public involvement approach in which activities were deliberately chosen to connect with and embody the sub-topics of the research.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;Three workshops were held with a group of older people, including care home residents, to inform a research agenda on indoor air pollution. Each workshop employed a hands-on experiential activity (painting ceramics, attending a glass-blowing demonstration, and building terrariums); all were aligned with the topic of indoor air quality. Workshops were designed to be informal, enjoyable and accessible, deliberately departing from traditional academic formats.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;Ten older people participated, including three care home residents. Workshops generated research priorities and identified important outcomes, including quality of life and dizziness, and acceptable interventions relating to indoor air pollution. Feedback indicated high levels of enjoyment, learning and appetite for continued involvement. The experiential approach was well received, fostering relaxed and meaningful discussion, equal participation between care home residents and community-dwelling older adults, and engagement that extended beyond the research itself.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusions: &lt;/strong&gt;Experiential methods, purposefully aligned with research content, offer a distinctive and effective approach to public involvement with older people, including care home residents. This approach extends existing creative and arts-based methods by embedding a clear conceptual connection to the research topic within activity design, with broader implications for inclusive public involvement practice.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Public contribution: &lt;/strong&gt;The workshops described in this paper were themselves the public involvement activity. Older people, including care home residents, actively shaped the research agenda on indoor air pollution by identifying priority outcomes and acceptable interventions. As this was an initial exploration into a new topic area, the research team had no established public contributor contacts with relevant lived experience of or interest in indoor air pollution to involve in co-designing the workshops. The workshops themselves were therefore the first step in building those relationships, with the intention that members of the group will be involved as genuine partners in any future research. Public contributors have been kept informed of the progress of this work throughout, including during preparation of this manuscript, and it is intended tha","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":"e70869"},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13562808/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148931915","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":"Co-Designing a Prototype Education and Training Intervention for Healthcare Professionals Working in Community Laryngectomy Care: An Experience-Based Co-Design Study.","authors":"Laura-Jayne Watson, Linda Sharp, David W Hamilton, Vicky Thornton, Joanne M Patterson","doi":"10.1111/hex.70870","DOIUrl":"10.1111/hex.70870","url":null,"abstract":"<p><strong>Introduction: </strong>Evidence indicates that people with a laryngectomy often perceive community healthcare professionals as less knowledgeable than hospital-based clinicians. Some individuals also report feeling more skilled than the professionals supporting them at home. This highlights a substantial gap in healthcare professional education and training, with significant safety implications for people with a laryngectomy, including reduced confidence in care, mistrust in healthcare professionals, and risks to continuity of care. To address this, the present research describes co-design of a prototype education and training package for community healthcare professionals.</p><p><strong>Methods: </strong>Informed by the principles of Experience Based Co-Design and underpinned by the Medical Research Council's guidance for Complex Intervention Development we ran prioritisation events followed by three iterative workshops with people with a laryngectomy, family members and healthcare professionals to develop the prototype education and training package. A digital expert supported all workshops. A combination of content and thematic analysis was used to analyse workshop data.</p><p><strong>Results: </strong>Twenty-eight participants took part in the prioritisation events and workshops: eight people with a laryngectomy, five family members and fifteen healthcare professionals. All participants agreed the highest priority need for developing a digital solution to community-based education and training. Preliminary programme theory, logic model and prototype education and training package were collaboratively designed. The education and training prototype includes ten agreed content topics (e.g. anatomy, communication), as well as design and implementation considerations.</p><p><strong>Conclusion: </strong>Through equal partnership working with key stakeholders, a prototype education and training package has been designed. The next stage is operationalisation, including co-production of content/supporting resources and building of the digital platform, and refinement.</p><p><strong>Lived experience contribution: </strong>Lived experience was embedded throughout the study, shaping both its direction and delivery. Individuals with lived experience contributed as members of the research steering group, informing the overall study design and ensuring its relevance from the outset. A dedicated patient and public involvement group supported key stages of the project, including the development of the participant recruitment strategy, creation of resources for co-design, and planning of the co‑design workshops. Their insights also informed the analysis of findings and the refinement of the final prototype, ensuring that the intervention remained grounded in the realities, priorities, and expertise of those directly affected. People with a laryngectomy and their families also took part in co-designing the prototype.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":"e70870"},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13573229/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148963941","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":"Equitable Patient and Public Involvement Strategies for Scaling Health and Social Care Interventions: A Consensus Study Inspired by Delphi Methods.","authors":"Roberta de Carvalho Corôa, Odilon Quentin Assan, Ali Ben Charif, Amédé Gogovor, Kathy Kastner, Robert K D McLean, Andrew Milat, France Légaré, The RePOS Network","doi":"10.1111/hex.70850","DOIUrl":"10.1111/hex.70850","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;Patient and public involvement (PPI) is recognized as essential for scaling interventions in health and social services, but there are few guidelines to support it. We sought consensus on strategies for involving patients and the public in scaling in an equitable and meaningful way.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;We conducted a participatory consensus study inspired by Delphi techniques. We used as a starting point 23 PPI strategies for scaling (on the involvement continuum, from providing information to full co-production) as identified in a 2024 scoping review. First, we established a steering committee, intended to include patient or public representatives, to validate the relevance of the 23 strategies for inclusion in an online survey consensus process to confirm their applicability to PPI. Second, researchers, health professionals, policymakers, and patient or public representatives completed the online survey to assess the validated strategies against four evaluation criteria: equity, comprehensiveness, adaptability and significance. We used the DELPHISTAR checklist to report results and the GRIPP2 framework to report PPI in the study.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Findings: &lt;/strong&gt;All 23 PPI strategies were found relevant by the steering committee and proceeded to the 2-round consensus process to evaluate 92 items (23 strategies x 4 criteria). By April, 2025, 14 participants had completed the first round and nine had also completed the second. Participants included patient and public representatives (n = 5), researchers (n = 6), health professionals (n = 3) and policymakers (n = 2) mostly based in Canada (n = 10). Of 23 PPI strategies assessed, 19 achieved consensus on at least one of the four criteria. Three strategies (Service users' needs assessment, Organizational advisory groups and Co-leadership in quality and safety improvement) achieved consensus across all criteria, while four strategies did not reach consensus on any. Co-leadership in quality and safety improvement (88.3%), Co-leadership in policymaking (87.3%) and Service users' needs assessment (87.3%) achieved the highest global scores. Consensus was reached on 44/92 items, most frequently for equity. These strategies were primarily situated in the organization of health and social care and the co-production level of the involvement continuum.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusions: &lt;/strong&gt;The strategies prioritized by stakeholders were not necessarily the ones most frequently discussed in the literature. We recommend systematically involving patient and public representatives throughout scaling, including when choosing PPI strategies.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Patient or public contribution: &lt;/strong&gt;A patient instructor was involved in the steering committee, sharing decisions on study design, data collection instruments and dissemination of findings. Patient and public representatives also took part in the consensus process, and their feedback was considered equal to that of t","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":"e70850"},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13559179/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148921913","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":"Return of Research Results to Participants in Longitudinal Cohort Studies in Health Research: Findings From 24 Cohorts of the Amsterdam Cohort Hub.","authors":"Yuwei Qi, Marieke F van Wier, Femke Jansen, Marleen van der Horst, Charles Agyemang, Elias Balt, Marieke M T Blom, Cyrina Brouwer, Jos A Bosch, Anouk den Braber, Felix P Chilunga, Udi Davidovich, Merijn Eikelenboom, Awa A Gassama, Mirjam I Geerlings, Janneke Heijne, Melany Horsfall, Martijn Huisman, Kim M Jonkman, Joep Killestein, Tamira K Klooker, Anitra D M Koopman, Sophia E Kramer, Jonathan Krikeb, Franca H Leeuwis, Lannie Ligthart, Saskia Y M Mérelle, Ghiselinde B G M Meijs, Tom Molenaar, Mirjam Oosterman, Patricia van Oppen, Nadine P G Paans, Brenda W J H Penninx, Didi Rhebergen, Femke Rutters, Yola Sol, Mandy Spaan, Eva M M Strijbis, Geertje Marije Takkenberg, Betty M Tijms, Natasja D Vijfschagt, Tanja G M Vrijkotte, Marlies J Visser, Eco J C de Geus, Cécile R L Boot, Emiel O Hoogendijk","doi":"10.1111/hex.70886","DOIUrl":"10.1111/hex.70886","url":null,"abstract":"<p><strong>Background: </strong>Returning research results to participants is increasingly recognised as part of participant-centred health research. How this is implemented in longitudinal cohort studies is not yet well characterised. This study aims to provide a descriptive overview of current result return practices across diverse cohort studies in the Netherlands.</p><p><strong>Methods: </strong>Drawing on the Amsterdam Cohort Hub, an infrastructure of population-based and patient-based cohorts in the Netherlands, representatives of 24 affiliated cohort studies completed a structured questionnaire administered via individual interviews. The questionnaire covered what results are returned, to whom, when and how. Individual-level and group-level return were distinguished. Cohorts also reported on motivations for returning results and barriers encountered in doing so. Data were summarised descriptively using frequencies.</p><p><strong>Results: </strong>Individual-level results beyond incidental findings were returned by 15 cohorts (65.2%), while group-level results were returned by 23 cohorts (96%). Individual-level return primarily involved physical and laboratory measures or was embedded in routine clinical care. Group-level results were mainly shared through newsletters. Practices varied by cohort type and were shaped by ethical considerations and practical constraints. Concerns about participant misinterpretation and limited resources were the most reported barriers.</p><p><strong>Conclusion: </strong>Return of research results is widely practised across cohort studies, but varies considerably in approach, shaped by ethical considerations, perceived communication risks, and financial and practical constraints. This descriptive overview of current practices may serve as a starting point for cohorts seeking to reflect on or develop their own result return procedures. Future research should examine the effects of various forms of result return on participant engagement and retention, as well as the role of participant preferences in shaping these practices.</p><p><strong>Patient or public contribution: </strong>This study includes a descriptive inventory of patient and public involvement in longitudinal cohort studies, in the form of result return practices. The findings are directly relevant to research participants, as they concern how cohort studies communicate research results to the people who contribute their data. The results may inform how cohorts develop and improve their participant communication strategies in the future.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":"e70886"},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13633701/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149118841","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":"Beyond Research Priorities: Stakeholder-Identified Health System Challenges From an Australian Childhood Cancer Priority-Setting Partnership.","authors":"Gayani De Silva, Eden G Robertson, Alison Bowers, Jason D Pole, Sheila K Patel, Joanne Cummings, Natalie Bradford","doi":"10.1111/hex.70884","DOIUrl":"10.1111/hex.70884","url":null,"abstract":"<p><strong>Background: </strong>Priority-setting partnerships (PSPs) are used to identify research questions that matter most to patients, caregivers, and clinicians. However, submissions that fall outside the scope of research prioritisation are rarely examined despite their potential to reveal important unmet needs. This study explored concerns relevant to practice and policy using the out-of-scope questions submitted during the Australian Child and Adolescent Cancer PSP.</p><p><strong>Methods: </strong>We conducted the Australian Child and Adolescent Cancer PSP with the James Lind Alliance to identify research priorities for childhood cancer. An online national survey collected submissions from children and adolescents diagnosed with cancer, their caregivers, and healthcare professionals. We identified submissions that fell outside the PSP scope. These were collated and analysed using qualitative content analysis, followed by framework analysis to deductively map themes to the World Health Organisation Health System Building Blocks, enabling system-level interpretation of community-identified concerns.</p><p><strong>Results: </strong>Of the 701 submissions, 99 (14%) were classified as out-of-scope and included in this analysis. Seventy-two respondents contributed to these submissions, most of whom were caregivers (n = 58, 81%). Themes mapped across the WHO building blocks, including treatment access, research innovation and translation, health financing, service delivery and environment of care, leadership and governance, health information and communication, and health workforce. Additional concerns were classified as dimensions of care.</p><p><strong>Conclusions: </strong>Out-of-scope PSP submissions provide valuable insights into patient, caregiver, and clinician concerns that complement research priorities. They highlight persistent challenges in access to care, supportive services, workforce capacity, information provision, and financial burden, underscoring that many family concerns stem from gaps in implementation, service delivery, and policy, rather than evidence alone. These system-level challenges must be communicated to funders, policymakers, charities, and consumers to translate these insights into meaningful improvements in care.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":"e70884"},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13617300/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149070556","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":"Escalating Concerns in Paediatric Hospital Care: A Qualitative Study of Involvement, Support and Empowerment of Families From Culturally and Linguistically Diverse Backgrounds.","authors":"Isis Grigoletto, Eileen Boyle, Alfizu Alhassan, Huaqiong Zhou, Sarah Cherian, Katie Browning, Joseph C Manning, Gavin D Leslie, Fenella J Gill","doi":"10.1111/hex.70900","DOIUrl":"10.1111/hex.70900","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;Families frequently recognise early signs of deterioration in their children. In English-centric environments, families from culturally and linguistically diverse (CALD) backgrounds face challenges in escalating concerns in hospital because of language barriers, limited health literacy, uncertainty about escalation pathways, and variable staff responsiveness. Although digital approaches may support communication, it remains unclear whether they address the wider organisational conditions required for equitable escalation of care.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Objective: &lt;/strong&gt;This study explored hospital experiences of CALD families and investigated their views on a potential digital tool to escalate acute clinical concerns during their child's hospitalisation.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Material and methods: &lt;/strong&gt;This qualitative study was guided by a multicultural consumer advisory group. Families from CALD backgrounds participated in semi-structured focus groups and one-to-one interviews, conducted in English or with interpreters. Audio-recordings were transcribed, de-identified and analysed using reflexive thematic analysis.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;Thirty-four parents/carers representing 34 distinct families and 15 CALD backgrounds participated in 11 focus groups and two individual interviews. Three themes were identified: (i) communicating is not easy; (ii) shaping health system satisfaction; (iii) communicating using digital tools. Families described both supportive and challenging interactions with health staff and the system. Positive experiences were associated with plain language, clear explanations, and inclusive communication. Negative experiences included not feeling heard when raising concerns, inconsistent access to interpreters, unclear information about how to escalate concerns, and distress associated with waiting and uncertainty in emergency care. Although some families saw the value in digital tools, particularly for translation, rapid communication, and access to information, they consistently prioritised broader service changes. These included routine offers of interpreter support, clearer explanations of hospital processes, more detailed information about their child's condition and treatment, and a more welcoming environment for asking questions and raising concerns.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusions: &lt;/strong&gt;Families viewed digital tools as potentially useful, but not sufficient on their own. Inequities in escalation of care were shaped not only by language discordance, but also by wider organisational conditions, including inconsistent interpreter access, unclear escalation pathways, variable staff responsiveness, and limited opportunities for families to feel heard. System change is therefore essential if digital approaches are to support equitable escalation of care in hospital settings for these families.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Lived experience or public contribution: &lt;/strong&gt;A consumer and community involvement wa","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":"e70900"},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13643952/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149129371","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":"Existing 'In-Between': A Qualitative Exploration of Individual, Interpersonal and Structural Influences on Empowerment Among Young Adults With Chronic Health Conditions.","authors":"Tiana A Kittos, Danielle M Muscat","doi":"10.1111/hex.70863","DOIUrl":"10.1111/hex.70863","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;Empowerment is a multifaceted construct conceptualised in different ways across the literature. Traditionally individual in its orientation, patient empowerment has more recently been acknowledged as also encompassing interpersonal and structural elements. As young adults with chronic health conditions enter the developmental stage of 'emerging adulthood' and transition from paediatric to adult care, empowerment may play a key role in supporting health management.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Objective: &lt;/strong&gt;This study aimed to explore what empowerment means to young adults, and the facilitators and barriers that co-exist at an individual, interpersonal and structural level. Additional aims were to explore healthcare providers' perspectives and to inform how empowerment is framed in this context.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Design: &lt;/strong&gt;We adopted a qualitative study design, drawing on phenomenology as a theoretical orientation and research methodology.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Setting and participants: &lt;/strong&gt;Twelve online semi-structured interviews were conducted; six with young adults with chronic illness and/or disability, and six with healthcare providers.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Analysis: &lt;/strong&gt;Thematic analysis was used to inductively analyse the data with a deep emphasis on reflexivity.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;Three themes were developed from the data: (1) Navigating healthcare in the 'in-between stage' of life; (2) 'I'm just adding to my tool kit': Stories of self-reflection, advocacy and knowledge gain on the pathway to empowerment; and (3) 'A safe space': Exploring how healthcare providers, interactions and spaces facilitate empowerment. The findings revealed that young adults with chronic health conditions encountered contradictory structural processes within healthcare systems that did not consistently equip them to self-manage their health, despite increasing expectations for autonomy and responsibility. Nevertheless, many demonstrated considerable agency, proactively acquiring the knowledge, skills, resources, and support necessary to foster empowerment and navigate the demands of self-managing a chronic health condition.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Discussion: &lt;/strong&gt;Our findings emphasise the co-existence of individual, interpersonal and structural elements of empowerment, and the tensions that arise during the in-between stage of young adulthood.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusions: &lt;/strong&gt;This study highlights that young adults require unique support to facilitate empowerment, with both barriers and facilitators in this process. Research should continue to privilege the young adult voice to improve empowerment outcomes and healthcare experiences for young people.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Lived experience contribution: &lt;/strong&gt;T. A. K. acknowledges her contribution of dual expertise as a researcher and as a young adult with lived experience of cancer.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Patient or public contribution: &lt;/strong&gt;Young adults with varying chronic illnesses and/or","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":"e70863"},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13679885/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149225453","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":"Stakeholder Perspectives on National Implementation of Financial Incentives for Smoking Cessation Before, During and After Pregnancy: A Policy Lab Study.","authors":"Linda van der Spek, Niek Mouter, Tessa Scheffers-van Schayck, Leonieke J Breunis, Hans van Kippersluis, Stijn Hooijman, Jasper V Been","doi":"10.1111/hex.70893","DOIUrl":"10.1111/hex.70893","url":null,"abstract":"<p><strong>Background: </strong>Financial incentives can substantially increase effectiveness of smoking cessation support for pregnant women, their partners, people planning a pregnancy, and parents, yet implementation in routine care remains limited. This study explored how incentives could be implemented within a national cessation programme through collaboration with key stakeholders.</p><p><strong>Methods: </strong>A Policy Lab approach was used to collaboratively identify barriers, opportunities, and policy directions for implementation. Two interactive sessions were held in autumn 2024 with representatives of the Dutch Ministry of Health, the National Health Care Institute, health insurers, researchers, healthcare professionals, a smoking cessation support provider, and a parent. Transcripts and exercise outputs were thematically analysed using the Consolidated Framework for Implementation Research (CFIR). As part of the policy lab process, we developed a policy brief, infographic, and explainer video.</p><p><strong>Results: </strong>Key challenges included limited public and political support, legal and financial barriers, and logistical and design-related issues. Participants recommended clear messaging on health and societal benefits; initiating pilot projects and providing clear insight into the costs, benefits, and timing of returns; and integrating incentives into existing cessation programme structures with accessible and feasible design.</p><p><strong>Conclusion: </strong>This study provides practical guidance for policymakers and health insurers to integrate financial incentives into smoking cessation support for (expectant) parents, while offering transferable insights for implementation in other settings.</p><p><strong>Patient or public contribution: </strong>A parent with lived experience of receiving smoking cessation support with incentives participated in the Policy Lab. In addition, healthcare professionals, smoking cessation programme providers, health insurers, and representatives from public bodies contributed perspectives grounded in their roles representing patient and public interests. These inputs informed the development of recommendations and dissemination materials, including the policy brief and explainer video, to enhance relevance, accessibility, and public acceptability.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":"e70893"},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13656341/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149169064","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}