Health Expectations最新文献

{"title":"A Critical History of Co-Production in the Design and Delivery of UK Mental Health Services.","authors":"Pete Fleischmann, Peter Schofield","doi":"10.1111/hex.70865","DOIUrl":"10.1111/hex.70865","url":null,"abstract":"<p><strong>Background: </strong>The term co-production is now very common and risks losing its original egalitarian and emancipatory meaning. Questions about what the term means relate to how the concept developed historically. We conduct a critical history of the concept to shed some light on this and inform contemporary practice.</p><p><strong>Objectives: </strong>To chart the history of co-production focusing on co-production in the design and delivery of mental health services; critically examining the extent to which the original egalitarian promise has been realised.</p><p><strong>Methods: </strong>We draw on early foundational texts, key UK policy frameworks and legislation, mental health service user/survivor movement accounts and more recent guidelines, using illustrative cases to critically examine the concept.</p><p><strong>Results: </strong>Early accounts from the US stressing reciprocity, shared power, and active citizenship directly influenced approaches to UK mental health services. Further accounts from the user/survivor movement stressed the importance of power sharing and a critique of medical models of mental distress. UK policy frameworks and legislation have since brought co-production from the margins to the mainstream, introducing a tension between a mainstream concept of co-production influencing services through collaboration and a service user/survivor concept of co-production as equal power sharing.</p><p><strong>Conclusion: </strong>Historically there have been a range of conceptions of co-production with different notions of what power sharing means for service users working alongside professionals.</p><p><strong>Lived experience or public contribution: </strong>Both authors have past lived experience of using psychiatric services. The manuscript was also shared with a small group of user/survivors with a particular interest in co-production and their feedback incorporated in the final draft.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":"e70865"},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13583470/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148984364","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 Qualitative Interview Methods With Young Children and Parents: Drawing, Pictures, and Puppets.","authors":"Arwa Katab, Bronia Arnott, Timothy Cheetham, Olivia Craw, Niina Kolehmainen","doi":"10.1111/hex.70942","DOIUrl":"https://doi.org/10.1111/hex.70942","url":null,"abstract":"<p><strong>Introduction: </strong>Children have the right to freedom of expression regarding topics important to them via any communication medium.¹ Conducting research on as opposed to with young children fails to fulfil their rights, promoting misconceptions that children are incapable of providing meaningful data. The start of formal education presents many challenges for young children; very few studies have involved children as active participants sharing their experiences. This co-design study aimed to produce, through the involvement of young children, methods for a creative interview package to be used with 4-5-year-olds to discuss the challenges of starting formal education.</p><p><strong>Methods: </strong>Six individual co-design sessions, and three user-testing interviews with young children (aged 3-5 years), alongside one group co-design session with older children (aged 6-12 years), were used to develop and refine methods. Pictures and photo-prompts, drawing activities, and the use of a toy puppet were explored within the sessions, collecting children's verbal feedback and recommendations, as well as the researcher's reflective notes and recommendations from parents. The resulting methods were integrated into a four-stage framework (Exploration, Adaptation, Confirmation, and Evaluation) to curate the final interview methods.</p><p><strong>Results: </strong>Barriers to children's engagement were identified with some participatory activities, for example cultural and family belief systems that discouraged self-portrait drawings within some communities. Children also engaged more in the interview once they had built a rapport with the puppet, and not only a rapport with the researcher. Pre-made images were sufficient in obtaining more detailed discussion of the children's experiences.</p><p><strong>Conclusion: </strong>This study resulted in the first interview methods package for young children which has been co-designed with young children. The study demonstrates that young children can be active contributors in designing research if provided with the opportunity to do so.</p><p><strong>Patient or public contribution: </strong>Children, parents and teachers provided input and shaped the design of this study.</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/PMC13693504/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149277302","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":"Playing It Differently: Using Performance-Based Interviewing to Engage Children in Healthcare Research.","authors":"Claire Treadgold, Jessica Nikolovski, Valsamma Eapen, Vasiliki Koutoulas, Constance Smith, Sarah Elliott, Lynn McCartney, Barb Vernon, Karlen R Barr, Dianna Smith-McCue, Les White","doi":"10.1111/hex.70922","DOIUrl":"10.1111/hex.70922","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Introduction/background: &lt;/strong&gt;Capturing children's healthcare experiences remains inherently challenging. Traditional interview approaches are often poorly suited to younger populations and their developmental needs, limiting opportunities for them to meaningfully express their perspectives. This can result in children's voices being underrepresented in research and healthcare. To address this concern, we trialled a novel, child-centred methodology, using professional performers trained in engaging hospitalised children ('Captain Starlight'). The approach was implemented within a national paediatric patient-reported experience measure (pPREM) development project, which served as a case study for the application.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;This study examines a child-centred data collection methodology and documents the process, benefits and challenges of a creative interviewing approach designed to engage children in qualitative research. The methodology was implemented during a larger project to co-design a pPREM, which serves as context for this case study. Professional performers ('Captain Starlights', herein 'Captains'), trained in child-centred communication, conducted semi-structured interviews while remaining in character as visitors from another planet who are unfamiliar with hospitals. This mythology aimed to position children as the 'experts,' encouraging them to explain what matters most during hospital experiences. Interviews incorporated play, storytelling, and age-appropriate activities to facilitate engagement. To understand the usefulness of this approach, we conducted follow-up qualitative interviews with Captains and used reflexive thematic analysis to explore how the method shaped interactions and data collection.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;The creative interviewing approach enabled flexible, child-led interactions, with Captains adapting their communication styles to suit the child's age, personality, and context. The use of play and character-driven narrative helped overcome children's unfamiliarity with providing formal feedback, fostering openness and sustained engagement. However, challenges included balancing character immersion with data collection, navigating consent processes, and maintaining clarity around the interviewer's role.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusion: &lt;/strong&gt;This novel interviewing methodology demonstrates how playful, imaginative approaches can facilitate meaningful engagement with children in healthcare research, enabling richer insights into their experiences. The approach created a safe and empowering environment in which children could articulate their needs and preferences. It forms part of a broader multi-stage project to co-develop a paediatric PREM, with this context allowing the methodology to be successfully piloted as a transferable approach for engaging children in healthcare research.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Patient/public contribution: &lt;/strong&gt;While this methodological study did no","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/PMC13700104/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149277350","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":"Scoping Review of Outcome Measures Used in Lived Experience-Led Mental Health Services.","authors":"Helena Roennfeldt, Heather Craig, Edith Botchway, Richard Schweizer, Christina Ng, Laura Hayes","doi":"10.1111/hex.70849","DOIUrl":"10.1111/hex.70849","url":null,"abstract":"<p><strong>Introduction: </strong>Service users have long advocated for alternative services led by people with firsthand or lived experience of mental health challenges. While several lived experience-led services, such as peer respites, are available, their evaluations rarely incorporate outcome measures to assess impact, thereby limiting evidence of their validity as alternatives to clinical services. The aim of this review was to identify and describe the outcome and experience measures used in lived experience-led services to better understand how evidence of their viability and acceptability is captured, and how this evidence supports these services as alternatives to traditional services.</p><p><strong>Methods: </strong>A scoping review of peer-reviewed literature on lived experience-led services was conducted by searching four databases (PsycINFO, Ovid Medline, CINAHL and Embase). Eligibility criteria included studies describing services led and delivered by people with lived experience (LE) of mental health challenges that implemented outcome or experience measures, and that focused on services outside clinical settings and not co-delivered by traditional mental health professionals.</p><p><strong>Results: </strong>Thirteen studies were included that used a range of measures, including existing or adapted clinical and recovery survey outcomes. Results identify diversity in the outcomes measured and a lack of measures developed by the lived experience workforce.</p><p><strong>Conclusion: </strong>While the results highlight positive outcomes of lived experience run services, they also reveal a reliance on traditional outcome measures and a critical need to develop LE-led outcome measures that align with lived-experience values and practice.</p><p><strong>Lived experience or public contribution: </strong>This manuscript was conceptualised and led by two researchers in designated lived experience research roles. These researchers identify as having lived/living experience of mental health challenges, service use and histories of trauma. The partnership between these two lived experience researchers (first and second authors) occurred through their shared interest in lived experience-led services and service evaluation. These authors use their lived experience to inform and guide this research, including the study's design, analysis and interpretation. The fourth author is also in a designated lived experience researcher role and contributed to the writing and revisions of the paper.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":"e70849"},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13548411/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148901721","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":"Lessons Learned in the Early Adoption of FaME Across Ireland: A Convergent Mixed-Methods Implementation Study (FaME Ireland).","authors":"Scott Rooney, Leanne Ahern, Edel Brennan, Eibhlis Cahalane, Vanda Cummins, Caroline Eldridge, Frances Horgan, Dawn A Skelton, Éidín Ní Shé, Katherine Thackeray, Boglarka Vig, Ruth McCullagh","doi":"10.1111/hex.70860","DOIUrl":"10.1111/hex.70860","url":null,"abstract":"<p><strong>Background: </strong>Falls are the most common cause of hospitalisation amongst older adults in Ireland. Structured exercise programmes are recommended to manage falls, and the Falls Management Exercise (FaME) programme has been shown to reduce falls and improve physical function. However, FaME delivery within an Irish context needs to be explored to ensure it is implemented effectively and equitably.</p><p><strong>Objective: </strong>To explore key stakeholders' experiences and examine key outcomes during the early adoption of the FaME programme across three sites in Ireland.</p><p><strong>Design: </strong>A convergent mixed-methods design was used to explore the early adoption of FaME across three sites in Ireland (Dublin, Kerry, and Sligo/Leitrim). Focus groups and interviews were conducted with key FaME stakeholders (clients, Postural Stability Instructors, service managers) to understand the experiences of local implementation. Baseline and outcome measures of falls and physical function contextualised the qualitative findings.</p><p><strong>Results: </strong>A census sample across the three study sites, 64 FaME Clients, 10 PSIs, and seven Service Managers were included. Themes described the Reach, Effectiveness, Adoption, Implementation, and Maintenance of FaME according to the RE-AIM framework. All groups recorded improvements in physical function following FaME.</p><p><strong>Conclusions: </strong>This study highlights factors influencing the adoption of FaME within an Irish context and provides recommendations for future implementation. To ensure effective and sustainable delivery, commissioners should consider how FaME can be embedded within exercise and falls management pathways and establish partnerships with local community organisations to support service delivery.</p><p><strong>Patient or public contribution: </strong>Public representatives from Age and Opportunity (n = 16), a national organisation that advocates for valuable activities and services as we age, and clients of FaME (n = 4) were involved in the early protocol planning, scheduled meetings, co-design phases, and analysis stages of the study. Their contribution influenced issues such as accessibility and acceptability of strength and balance programmes and options for dissemination. Representatives from Age and Opportunity reviewed the manuscript for readability.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":"e70860"},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13548410/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148901725","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":"Mind the Gap: A Qualitative Study of Patients' Experiences of Acute Elective Care Across the NHS and the Private Sector in England.","authors":"Eleanor Gee, Gemma Stringer, Jane Ferguson, Michael Molete, Kieran Walshe, Christos Grigoroglou, Thomas Allen, Michael Anderson, Nils Gutacker, Karen Bloor","doi":"10.1111/hex.70867","DOIUrl":"10.1111/hex.70867","url":null,"abstract":"<p><strong>Introduction: </strong>Whilst the use of the private sector to deliver acute elective care in the United Kingdom is increasing, there is limited understanding of the patient experience when moving between NHS and private organisations to receive treatment. This study aims to explore how patients make choices and navigate care pathways across NHS and private sector organisations.</p><p><strong>Methods: </strong>A qualitative semi-structured interview study was conducted with 27 patients and 73 clinical and non-clinical senior leaders across NHS and private organisations between September 2023 and April 2025. Analysis was conducted using a reflexive thematic approach and abductive analysis to position themes against wider knowledge.</p><p><strong>Results: </strong>Three key themes structured around the patient journey were identified through analysis. First, the ability of patients to make informed decisions on receiving treatment in private sector organisations was constrained by long waiting times and challenges accessing NHS care. Second, there was a lack of consistency in the timely and thorough transfer of patient information between NHS and private sector organisations, which undermined patient trust in the safe provision of care when delivered across the interface. Third, the provision of aftercare across the interface was fragmented, and its effects compounded by ambiguity for patients, and at times, providers, for who was responsible for the ongoing management of patient care once they had received treatment in a private hospital.</p><p><strong>Conclusion: </strong>Patients receiving elective care across the NHS and the private sector faced some barriers in decision-making, transfer of information and aftercare. In order to address these challenges, there is a need for stronger collaboration between the sectors to improve information sharing, continuity of care and patient safety across the interface.</p><p><strong>Patient or public contribution: </strong>Patients and carers were involved in our study from inception to dissemination. Our Patient and Public Involvement (PPI) forum was involved throughout project design and planning and gave us feedback and guidance on research materials and outputs (e.g., interview schedules, participant recruitment material, theme development). Our PPI group co-produced our patient interview schedule and were involved in analysis of patient interviews. Our PPI co-applicant was involved in the preparation of this manuscript.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":"e70867"},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13575767/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148972344","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":"Developing Best Practices in Co-Production With Lived Experience Experts in Bipolar Research: Insights From the AMBIENT-BD Lived Experience Advisory Panel.","authors":"Raahat Manrai, Amber Roguski, Amy Ferguson, Iain Campbell, Daniel J Smith, Aja L Murray, Maria Gardani","doi":"10.1111/hex.70887","DOIUrl":"10.1111/hex.70887","url":null,"abstract":"<p><strong>Introduction: </strong>Co-production is becoming an established methodology in mental health research, yet there remains a lack of condition-specific frameworks to guide its design and implementation. For bipolar disorder in particular, there is limited evidence on how to meaningfully engage lived experience experts in the context of possible mood instability and other impairments. This paper presents insights from a consultation with people with lived experience of bipolar disorder, aimed at developing recommendations for conducting co-production with people with bipolar.</p><p><strong>Methods: </strong>A one-off, 1-h online consultation was conducted with four members of the AMBIENT-BD Lived Experience Advisory Panel (LEAP). The consultation used a semi-structured focus group format, guided by a topic guide, to explore strategies for recruiting and engaging co-producers in bipolar disorder research. Data were analysed using reflexive thematic analysis.</p><p><strong>Results: </strong>Four overarching themes were developed: (i) Communicating with co-producers- capturing how trusted channels and regular contact support recruitment and sustained engagement; (ii) Providing accessible information- addressing the need to balance sufficient detail with readable, low-burden formats during periods of instability; (iii) Building and sustaining trust- highlighting trust in the research process and partnerships with third-sector organisations as preconditions for meaningful involvement; and (iv) Perceived impact as a motivator- reflecting how community belonging and tangible incentives shape willingness to participate. A provisional set of practical recommendations was derived from these themes, including recruiting through trusted organisations, using non-technical language and multiple formats, offering meaningful incentives, and using low-burden communication methods during periods of unwellness.</p><p><strong>Conclusion: </strong>Grounded in lived experience perspectives, this paper conceptualises co-production as a relational process in which trust, accessible communication and visible impact form the foundation for meaningful engagement with people with bipolar disorder. Positioned as a consultative contribution on the IAP2 Spectrum of Public Participation, the paper offers practical, mental health-specific guidance for researchers seeking to develop advisory groups and other participatory approaches with the bipolar population.</p><p><strong>Patient/public contribution: </strong>This study has been conducted in partnership with people with lived experience of bipolar disorder. They were involved in the conceptualisation, design and data collection of the study. They helped to inform the process of conducting a co-production with people with bipolar disorder. Findings from the consultation were shared with them in a separate feedback session.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":"e70887"},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13636650/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149118838","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":"Genomic Data Governance Challenges Between Research and Clinical Care: A Scoping Review.","authors":"Alice Kim, Bronwen Merner, Mark Taylor, Yingyi Luo, Fabian Cannizzo, Alan Petersen, Clara Gaff, Ainsley J Newson, Kate Marchant, Louise Keogh","doi":"10.1111/hex.70889","DOIUrl":"10.1111/hex.70889","url":null,"abstract":"<p><strong>Introduction: </strong>The translational nature of genomics highlights the importance of developing a robust genomic data governance framework. To inform the development of such a framework for Australia, we conducted a scoping review to identify genomic data governance and management differences between research and clinical care.</p><p><strong>Methods: </strong>For this scoping review, four databases were searched and 9528 relevant articles published between January 2013 and October 2024 were identified. After screening, 43 empirical, legal and theoretical/commentary articles were included. The differences reported to affect genomic data governance and management practices across clinical and research settings were extracted and synthesised.</p><p><strong>Results: </strong>Fifteen empirical articles revealed that the 'community' and the 'workforce' reported different consent priorities and differing understandings of the expected benefits of providing genomic data for research. Three legal articles reiterated the influence of regulatory regimes on genomic data practices and rights. Lastly, all twenty-five theoretical/commentary articles were authored by researchers; none by community representatives. While 3/25 articles described the genomic data practices of rare and undiagnosed disease patient populations, 22/25 examined the ethical, legal and social implications arising from genomic data. Among the latter, 14/22 proposed 'solutions' to address identified genomic data challenges associated with consent, returning research genomic data to patients and advancing precision medicine.</p><p><strong>Conclusion: </strong>Differences in understanding, expectations and regulatory regimes can challenge genomic data governance and management practices and perceptions. Considering the implications of these challenges, meaningful community involvement will be critical in developing a governance framework that responsibly leverages genomic data to deliver more equitable health care.</p><p><strong>Lived experience or public contribution: </strong>Members of the Genetic, Undiagnosed and Rare Disease (GUARD) Collaborative - the LINEAGE Consortium's Community Advisory Group partner - Emma Bonser, Monica Ferrie, Alex Fulton, Caroline Kiefer, Kate Marchant, Tony Neilson, Maya Pinn, Tania Prior-Smith, Heather Renton, Susie Roczo-Farkas and Joel Taggart contributed community perspectives and critical reflections during discussions of early findings, informing the development of this manuscript. Kate Marchant, a LINEAGE-GUARD member, is an author of this manuscript, contributing critical revisions and approving the final manuscript.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":"e70889"},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13633702/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149118849","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":"Engaging Parents in Healthcare Interventions to Improve Paediatric Patient Safety: A Scoping Review.","authors":"Thomas Purchase, Nicholas Hodson, Samuel Li, Isobel Joy McFadzean, Joanne Hughes, Philippa Rees, Fiona Wood, Sarah Yardley, Adrian Edwards, Andrew Carson-Stevens","doi":"10.1111/hex.70917","DOIUrl":"10.1111/hex.70917","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;Paediatric patient safety incidents remain a significant global concern, with parents often playing a crucial role in detecting and preventing harm. Despite international calls for family partnerships in healthcare, evidence on how to meaningfully engage parents as participants in improvement interventions or within their development is limited.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Objective: &lt;/strong&gt;To summarise and describe healthcare interventions that engage parents to improve key paediatric patient safety issues (relating to medication, communication, diagnosis and assessment, documentation, and administrative processes) and to explore the nature of parental engagement within the studies, including as research participants within the interventions themselves and/or the design and conduct of the study.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;In this scoping review five databases (Medline, EMBASE, CINAHL, Web of Science and Scopus) and grey literature were searched for studies published from 2000 to August 2025. Eligible studies (published in English) described interventions aimed at mitigating key patient safety issues and engaged parents within the intervention and/or the wider study design. Data were independently charted and synthesised narratively using the Patient and Family Engagement (PFE) framework and the International Association for Public Participation (IAP2) Spectrum.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;111 studies were included, predominantly from secondary care settings (n = 89, 80%), conducting experimental study designs (n = 43, 39%) or quality improvement projects (n = 36, 32%). Communication and medication safety were the most frequently targeted areas (n = 72, 65% and n = 55, 50%, respectively). Interventions were categorised into 17 groups, totalling 179 interventions, most commonly involving process standardisation (n = 26/111, 23%) or parent-targeted education (n = 25/111, 23%). Outcome measures largely reported parent-specific factors, such as their perception (n = 38/111, 10%) or knowledge (n = 21/111, 19%), with minimal evaluation of real-world safety outcomes. Parental engagement within healthcare interventions was focused on Direct Care (n = 108, 97.3%) and most commonly occurred through consultation-based approaches (n = 78, 70.3%). Parental engagement within research activities was primarily classified as Inform (n = 66, 59.5%), suggesting limited involvement in research design, development, or delivery.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusion: &lt;/strong&gt;Parental engagement is essential to improving paediatric patient safety, yet it remains limited, inconsistent, and often tokenistic. Greater partnership with parents is needed, both as contributors to research and as partners in the design and delivery of healthcare services and safety interventions. Embedding engagement within research and quality improvement, alongside standardised approaches to its evaluation and reporting, will be critical to achieving a more inclusive, human-","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":"e70917"},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13655772/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149168924","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A Mixed-Methods Exploration of the Quality of Care and Care Needs for Asian Children and Young Adults With Serious Long-Term Conditions.","authors":"Shih-Chun Lin, Mei-Chih Huang, Hsiang-Ying Lu, Ying-Chu Chen, Chao-Neng Cheng, Frank Leigh Lu, Jong-Hau Hsu","doi":"10.1111/hex.70892","DOIUrl":"10.1111/hex.70892","url":null,"abstract":"<p><strong>Background or context: </strong>Children and young adults with serious long-term conditions frequently have multidimensional palliative care needs before specialist palliative care referral. However, evidence from Asian populations regarding reported care outcomes and the care needs of children, young adults, and their families remains limited.</p><p><strong>Objective: </strong>To compare patient- or proxy-reported outcomes across levels of professionally assessed palliative care needs and explore felt and unmet care needs from the perspectives of family caregivers and healthcare professionals.</p><p><strong>Design: </strong>A convergent mixed-methods design.</p><p><strong>Setting and participants: </strong>Participants included 88 caregiver-patient dyads from three medical centres in Taiwan. Patients were aged 1-25 years, had Paediatric Palliative Screening Scale (PaPaS) scores ≥ 15, and had not received specialist palliative care. Twelve family caregivers and 14 healthcare professionals were interviewed.</p><p><strong>Main outcome measures: </strong>PaPaS Scale, the African Children's Palliative Care Outcome Scale (C-POS), and semi-structured interviews.</p><p><strong>Results: </strong>Participants with PaPaS scores ≥ 20 had poorer outcomes for pain, crying, and playing than those scoring 15-19, and their caregivers had greater difficulty sharing their feelings (all p < 0.05; standardised mean differences, 0.35-0.55). Maternal employment status was associated with total C-POS scores (p = 0.005). Four themes described seeking evolving care guidance, integrating care into family routines, sharing enduring caregiving responsibilities, and balancing present living with future preparation. Integration showed that greater normative needs were accompanied by challenges in symptom recognition, everyday participation, and caregiver emotional communication. Although caregivers generally reported receiving adequate support, the qualitative findings indicated that support was most useful when translated into coordinated and practical care plans tailored to family routines and readiness.</p><p><strong>Conclusion: </strong>Integrating professional assessments, reported outcomes, and caregiver and healthcare professional experiences identified complementary care needs. The findings support coordinated child- and family-centred care that addresses evolving symptoms, everyday routines, caregiver burden, emotional communication, and families' changing time orientations before referral to specialist palliative care.</p><p><strong>Patient or public contribution: </strong>A parent expert reviewed study materials and recruitment strategies and contributed to interpretation of the findings.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"29 5","pages":"e70892"},"PeriodicalIF":3.4,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13643943/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149129407","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}