Health Expectations
○ Wiley
Preprints posted in the last 90 days, ranked by how well they match Health Expectations's content profile, based on 12 papers previously published here. The average preprint has a 0.02% match score for this journal, so anything above that is already an above-average fit.
Ferreira, C. S.; Ribeiro, M. A.
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BackgroundApproximately 300 million people worldwide live with a rare disease, and the majority of rare diseases manifest in childhood. For families, the period before diagnosis is often protracted and distressing, marked by repeated consultations, inconclusive investigations, conflicting medical opinions, and the absence of a recognisable name for their childs condition. While the clinical and epidemiological dimensions of the diagnostic odyssey have been documented, the narrative and experiential dimensions of how parents live through and make sense of prolonged diagnostic uncertainty remain underexplored, particularly in low- and middle-income country contexts. AimTo explore the narrative experiences of parents navigating diagnostic uncertainty for children with rare diseases in Brazil. MethodsA narrative inquiry informed by the three-dimensional narrative space framework of Clandinin and Connelly was conducted. Sixteen parents (twelve mothers and four fathers) of children who had experienced a diagnostic delay of at least two years were recruited from two rare disease referral centres in Sao Paulo and Belo Horizonte. Data were collected through two narrative interviews per participant, supplemented by participant-produced timelines and family photographs. Analysis followed a narrative analytical approach attending to temporality, sociality, and place. FindingsThree narrative threads were woven across the parents stories: (a) "Living in the space before the name," capturing the disorienting experience of caring for a child whose suffering could not be categorised, explained, or predicted; (b) "Fighting to be believed," describing the relentless advocacy required to sustain medical attention in a system that struggled to accommodate conditions falling outside familiar diagnostic categories; and (c) "Rewriting the story," illuminating how the eventual arrival (or non-arrival) of a diagnosis reshaped parents understanding of their child, their family, and themselves. ConclusionDiagnostic uncertainty for parents of children with rare diseases is not a passive waiting period but an active, effortful, and identity-transforming experience. The findings highlight the need for healthcare systems to provide structured psychosocial support during the pre-diagnostic period and for clinicians to develop communication practices that acknowledge, rather than dismiss, the legitimacy of undiagnosed suffering.
Tredget, G.; Milenova, M.; Parkash, R.; McGrath, R.; Edwards, M. J.; Gee, S.; Pigg, W.; Karwacki, D.; Costa, C.; Shafique, S.; Adams, M.; Waghorn, J.; I'Anson, D.; Ronaldson, A.; Haire, K.; Githuku, C.; Beveridge, E.; Williams, J.
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Background: Adults with severe mental health conditions (often referred to as severe mental illness, SMI) experience 15 to 20 year mortality gap relative to the general population, with lung cancer a significant contributor. National cancer policy targets earlier diagnosis but does not explicitly address how pathways function for this group. Aims: This study aimed to describe lung cancer risk, prevalence, screening eligibility, referral activity and diagnostic pathway performance for adults with SMI in South East London (SEL), and to examine where along the pathway inequalities arise. Methods: Co-designed with experts with lived experience and voluntary sector, this exploratory mixed-methods service evaluation combined quantitative analysis of routinely collected data from the Quality Outcomes Framework (QOF), SMI Register and Cancer Waiting Times Record (April 2023-March 2024) with semi-structured qualitative interviews (n=11 clinical staff) and focus groups (n=6 adults with lived experience of SMI). Quantitative and qualitative data were analysed using descriptive statistics and framework-based thematic analysis respectively, and findings were integrated using a joint display approach, organised by the Consolidated Framework for Implementation Research (CFIR). Results: Lung cancer prevalence was approximately double among adults with SMI (0.17% vs 0.09% in the general population). Despite Urgent Suspected Cancer (USC) referral rates being more than twice as high in the SMI population (63 vs 28 per 100,000), fewer cancers were detected via planned general practice (GP) routes (11% vs 20%), the 28-day Faster Diagnosis Standard was not met for any SMI patient diagnosed with lung cancer during the study period; overall FDS performance was 76% in the SMI population compared with 84% in the general population; and appointment non-attendance was more than double that in the general population (6% vs 3%). Qualitative findings identified individual, service and system-level mechanisms, including stigma, diagnostic overshadowing, fragmented coordination, and rigid pathway protocols, that compound disadvantage across lung cancer pathway stages. Conclusions: Inequality in lung cancer outcomes for adults with SMI accumulates across the pathway rather than arising at a single point of failure. Addressing this requires proportionate adaptations within existing cancer pathways, alongside routine reporting of cancer outcomes stratified by SMI population. Keywords: severe mental health conditions, lung cancer, health inequalities, cancer screening, diagnostic pathway, mixed methods
Greenland, K.; Polack, S.; Wilbur, J.
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Adolescents with Down syndrome face unique menstrual health challenges, yet their experiences remain under-researched. This study aimed to describe the menstruation experiences of adolescents with Down syndrome and their caregivers, in the UK, to inform the development of tailored, evidence-based interventions for this population. Guided by an advisory group of caregivers and young people with Down syndrome, this mixed-methods study (September 2024 -July 2025) involved a national online survey of primary caregivers (N=143) and participatory interviews with adolescents (n=6), mothers (n=11) and healthcare and education professionals (n=8). Quantitative data were analysed descriptively according to support needs (high vs low), and qualitative data were analysed thematically. The median age of menarche (12 years) aligned with the general population. While adolescents generally coped better with menarche than caregivers anticipated, 91% of 120 caregivers of adolescents who had reached menarche had ongoing menstruation concerns. While products like period underwear ("magic pants") improved independence and simplified care, key remaining concerns include: heavy periods (48%); personal care (45%); menstrual pain (45%); and the communication of pain (26%). The impact on adolescent wellbeing was greater for those with greater support needs. Additionally, 33% of caregivers felt "overwhelmed" by menstrual-related care. Decision-making for hormonal intervention was a source of heavy responsibility for caregivers. There is substantial demand for accessible educational and practical resources to support menstruation. Menstrual health is a highly individualised experience for adolescents with Down syndrome. Significant unmet needs persist, particularly for those with higher support needs. Successful outcomes require supporting caregivers through provision of accurate information that dispels pre-menarche anxiety alongside accessible and appropriate guidance to foster young peoples independence, choice and autonomy. Future interventions must be co-developed with the Down syndrome community to ensure safe, dignified menstruation. FundingDowns Syndrome Research Foundation UK
Kurkova, V.; Modanloo, S.; Wu, Y.; Tian, J.; Desnoyers, E.; Adu, M. K.; Wong, G.; Greenshaw, A.; Hayward, J.
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The postpartum period involves profound physical, emotional, and social changes, yet many women report fragmented, infant-centered care that leaves their own needs insufficiently addressed. Digital health tools, including mobile apps, wearables, telehealth, and online resources, are increasingly used by postpartum women to seek information, support, and reassurance; however, little is known about how women experience these tools in their everyday lives. This qualitative study employed thematic analysis to explore the perspectives of postpartum women on digital health. Postpartum women ([≤]12 months after birth) living in Alberta, Canada, were recruited through maternity clinics and targeted social media advertisements. Four virtual focus groups (4-6 participants in each; 18 participants overall) were conducted via Zoom using a semi-structured guide on postpartum healthcare experiences, use of digital tools (apps, wearables, telehealth, AI), and perceived barriers and facilitators to adoption. Sessions were audio-recorded, transcribed verbatim, and coded by multiple researchers. Thematic analysis identified 32 codes, organized into 12 subthemes and four overarching themes: navigating postpartum support networks; empowerment through digital health tools; conditions for acceptable digital health design; and when technology feels like a burden. Women appreciated multiple sources of support from midwives, public health nurses, peers, and online communities, but described care that quickly became infant-focused, leaving their own recovery and mental health under-addressed, particularly in rural settings. Digital tools helped mothers structure infant and self-care, track symptoms, and prepare for appointments, yet also created new forms of burden, including information overload, usability challenges, privacy concerns, and feelings of surveillance or pressure to perform. Participants emphasized personalization (flexible notifications, mother-focused content), embedded mental health support, integration with trusted providers, and co-designed, credible platforms endorsed by Canadian health systems. Overall, to be acceptable and effective, tools must center mothers needs and be embedded within a broader ecosystem of responsive, continuous care. Author summaryBecoming a parent is a major life change, and many women feel that support from the health system drops off once the baby is born. At the same time, new mothers are increasingly turning to mobile phone apps, wearable devices, online groups, and video visits to answer questions, track health, and feel less alone. We wanted to understand women lived experience with these digital tools after giving birth: what feels helpful, what feels burdensome, and what they would want in an ideal tool. Our research team, consisting of three PhD students, held four online focus group discussions (4-6 participants per group; 18 participants overall) with women in Alberta, Canada, who had given birth within the past year. They described digital tools as both empowering and exhausting. Apps and wearables helped them track feeding, sleep, and symptoms, organize daily life, and come better prepared for medical appointments. At the same time, constant tracking, frequent notifications, and unclear data practices could feel overwhelming, guilt-inducing, or intrusive. This study is an important first step in a larger co-design work. By listening closely to mothers stories, we gathered practical ideas about what a supportive postpartum app should (and should not) do. In future phases, we plan to work directly with postpartum women and frontline clinicians to turn these ideas into a user-friendly, trustworthy digital tool that supports both mothers and babies health.
Kemp, E.; Sim, J.; Wright-Bevans, K.; Renke, S.; Chew-Graham, C. A.; Finney, A.; Harper, C.; Marlow, L. A.; Sherman, S. M.
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Background Physically Disabled women are less likely to access cervical screening than non-disabled women, yet little research has been conducted to understand the problems that Disabled women face or potential solutions. Methods A cross-sectional online survey was conducted with 1493 UK-based participants who identified as having a physical disability, impairment, condition, or difference that makes cervical screening difficult or impossible. Participants were presented with statements about cervical screening problems and potential solutions and asked to indicate agreement using a 5-point scale. They also provided open-ended comments. Data were analysed using descriptive statistics, multinomial logistic regression and thematic analysis. Results More than half of participants reported delaying/missing (46.8%) or never attending (8.8%) screening, with most of those (71.0% and 81.4% respectively) indicating that the main reason was disability-related factors. The highest levels of agreement for problems were for concerns about pain, embarrassment, and fear of what the test might find and for potential solutions were for having a doctor or nurse who is willing to try different solutions, discusses specific needs, and understands physical disability. Never-attendance (OR = 0.022, 95% CI 0.014, 0.035) and delaying or missing appointments, (OR = 0.057, 95% CI 0.043, 0.076) negatively predicted future screening attendance. Six themes were identified from open-ended comments, supporting and extending the quantitative findings. Conclusion Disabled women face the same problems related to cervical screening as non-disabled women and additionally face disability-specific problems. Cervical sample taker training should incorporate ways to support physically Disabled women to have equitable access to screening.
Buchanan, K.; KAUMANNS, A.; THALIB, L.; Leahy-Warren, P.; NIEUWENHUIJZE, M.
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Introduction Perinatal Empowerment is widely referenced in maternity care research, yet its use often lacks clear conceptual definitions and validated measures. Existing instruments do not capture the multidimensional nature of perinatal empowerment, including both external dimensions (e.g., gender equity, resource access), and internal dimensions (e.g., confidence, agency and informed decision making). This gap has limited the ability to rigorously evaluate how healthcare experiences shape empowerment during pregnancy, birth, and the postpartum period. Aim To develop a valid and reliable instrument that measures dimensions of perinatal empowerment, both external and internal. Methods Instrument development followed the seven-step MEASURE framework. Initial item generation was guided by a concept analysis, a scoping review of existing instruments, and feedback from international midwifery experts. A preliminary 51-item instrument underwent expert content validity review, resulting in 48 items, which were then pilot-tested with six pregnant and postnatal women. A large-scale validation study was conducted via an international online survey (N=155). Psychometric testing included exploratory factor analysis (EFA), reliability assessment using Cronbachs , known-groups validity testing, and regression analyses adjusting for potential confounders. Results EFA supported two overarching dimensions--external and internal empowerment--with six factors across 30 final items (18 external, 12 internal). Sampling adequacy was high, and item loadings exceeded recommended thresholds. Internal consistency was strong for both dimensions (=0.88 external; =0.87 internal). Women receiving midwifery continuity of care reported significantly higher empowerment scores across total, external, and internal dimensions compared with other care models (p<.001). Differences between primiparous and multiparous women were not statistically significant. Conclusion The MPower instrument represents a conceptually grounded, psychometrically robust measure of multidimensional perinatal empowerment in high-income settings. Further validation in more diverse populations is needed to refine the instrument and expand its applicability across clinical and research contexts.
White, C.; Price, E.; Walker, L.; Bell, J.; Revell, L.
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Social prescribing has assumed increasing dominance in policy and practice internationally, including in the UK, where it has an increasing role in addressing social needs such as isolation, and social determinants of ill-health. Although General Practitioners are perceived as key referral sources, social workers in one locality were found to play a significant role in referral. This suggests that the social work role in this context has been under-recognised and under-explored. This study sought to explore social workers perceptions and experiences of social prescribing through an online survey conducted from January - June 2022. All UK social workers were eligible to participate, regardless of whether they had made referrals. Responses (105) were collected from all UK nations. Data was analysed using inductive thematic analysis. Four key themes were generated: contended and contested boundaries; complementary spaces; delineated spaces of simplicity and complexity; social work under threat. Participants recognised that social prescribing could provide valuable client support and could be a useful resource for social workers. However, they also expressed concerns about overlapping professional boundaries and the potential for social prescribing to encroach on social work, perceiving it as most appropriate for the delivery of support to those with low-level needs.
Litchfield, I.; Dutton, F.; Harper, L.; Kaur, S.; Luxmoore, C.; Rahman, L.; Wolhuter, C.; Bird, C.
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Background In the United Kingdom, the National Health Service is attempting to address the ongoing challenges to heath equity in underserved children and young people (CYP) by creating Neighbourhood Multi-Disciplinary Teams (NMDTs) that combine health services, social care providers, local authorities, voluntary, community and faith and social enterprise is needed. Despite this significant shift in the delivery of care, there is a lack of suitably robust evidence of family experience to inform their development. This work contributes to this need using the experience and perspectives of families using the experience and perspectives of families using an early example of an NMDT for CYP the Sparkbrook Children's Zone in Birmingham, United Kingdom. Methods The study used data collected from two focus groups conducted with parents whose children had been treated by the Sparkbrook Children's Zone. The data were analysed using a directed content analysis to populate Sekhon's Theoretical Framework of Acceptability. Results In summary and by framework domain, we found that that individuals became aware of the SCZ through a range of sources, understanding that it was multidisciplinary if sometimes unsure of precisely the organisations involved (Intervention coherence) Parents described the benefits to access of a locally situated collocated service (Burden) the personalised relationship with providers (Cultural sensitivity0 extended conultation time, and support for the family's complex clinical needs (Perceived effectiveness) Conclusions Parents appeared to prefer the SCZ over usual primary care but more work is needed with larger sample sizes to ensure that the structure of NMDTs are understood and optimised.
Schoenaker, D.; Lovegrove, E.; Santer, M.; Matvienko-Sikar, K.; Carr, H.; Alwan, N. A.; Kubelabo, L.; Davies, N.; Godfrey, K. M.
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BackgroundPrimary care practitioners are well-positioned to support people of reproductive age in preparing for pregnancy and parenthood. Such "preconception care" is ideally delivered opportunistically during routine consultations, although limited time presents a barrier. AimTo achieve consensus on priority topics for opportunistic preconception care in general practice. Design and settingA three-step consensus study involving UK-based primary care practitioners and people of reproductive age. MethodThe consensus process involved: 1) identifying potential topics through literature and guideline reviews, workshops with people of reproductive age (n=15), and interviews with primary care practitioners who work in general practice (n=14); 2) prioritising topics using a Delphi survey (n=85 participants completing round one, n=63 completing all three rounds); and 3) agreeing on priority topics during an online consensus workshop (n=21 participants). Participants were recruited through a Public Advisory Group, charities, and professional organisations. ResultsReviews and workshops/interviews with people of reproductive age and practitioners identified 37 potential topics. The Delphi survey and consensus workshop identified 16 priority topics. These were combined into four overarching topic areas for discussion during relevant consultations: O_LIPatient knowledge of preconception health and pregnancy C_LIO_LIIdeas, concerns and expectations (e.g. pregnancy intention, prior pregnancy experiences) C_LIO_LIHealth conditions (e.g. medication use, mental/physical health, immunisation) C_LIO_LIHealth behaviours (e.g. folic acid supplement use, smoking, alcohol consumption). C_LI ConclusionThe agreed priority topic areas offer a structured foundation for delivering patient-centred, opportunistic preconception care in primary care. The findings support future co-development of practical tools and resources to enable routine implementation. How this fits inPreconception care improves pregnancy outcomes, but in UK general practice it is inconsistently delivered, partly due to limited time and guidance that offers little prioritisation for opportunistic consultations. This study identifies four overarching topic areas for preconception care, based on consensus among people of reproductive age and primary care practitioners. The resulting priority list offers clinicians a practical, flexible way to initiate patient-centred preconception care discussions within routine consultations.
Faux-Nightingale, A.; Harrison, R.; Burton, C.; Bajpai, R.; Clarson, L. E.; Hadley-Barrows, T.; Haines, J.; Helliwell, T.; Hider, S. L.; Jinks, C.; Jordan, K. P.; Knight, N.; Mallen, C. D.; Mason, K. J.; Welsh, V. K.
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Background Advice and Guidance (A&G) enables primary care clinicians to seek specialist input, supporting decision making and avoiding unnecessary referrals. The use of A&G has significantly expanded, accelerated by COVID19 and contractual changes. While A&G is intended to streamline elective care, concerns persist regarding workload shift, variable responsiveness, and system usability. Despite growing policy emphasis, little is known about why clinicians choose to use A&G. Aim Explore the current use of A&G within primary care, focusing on decision making processes which underpin PCCs' decision to use A&G. Design and Setting Qualitative study set in English Primary Care Method Twenty semi structured video interviews were conducted with primary care clinicians purposively sampled for maximum variation. Topic guides were developed with PPIE input and refined iteratively. Data were analysed using reflexive thematic analysis within an interpretive description framework, with themes developed collaboratively and refined through discussion with researchers and PPIE contributors. Ethical approval was obtained (REC 333799). Results Four overarching themes encapsulate clinicians' decisions to use A&G: clinical presentation (acuity and complexity), navigating healthcare pathways, previous experiences of A&G, and using A&G to validate clinical decision making. Barriers included delayed responses and uncertainty about inequitable workload distribution. These factors shape how effectively A&G could be integrated into routine practice. Conclusion Primary care clinicians use A&G to support patient care and aid decision-making, but its effectiveness depends on timely, clinically helpful responses. Ensuring responses remain appropriate to primary care remit and capacity will be essential if A&G becomes the main route into elective care.
Alali, A.; Soundy, A.; Falla, D.; Deane, J.
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ObjectivesTo explore patients and physiotherapists perspectives on a snack-based physical activity (PA) approach and mobile health technologies (mHealth) for non-specific chronic low back pain (NSCLBP). Snack-based PA refers to short, frequent bouts of activity (2-5 minutes) integrated into daily routines. DesignQualitative study using Interpretative Phenomenological Analysis (IPA) of semi-structured online interviews. SettingCommunity-based recruitment in the United Kingdom. Interviews were conducted online via Microsoft Teams between May and November 2024. ParticipantsSixteen participants were purposively sampled: eight adults with NSCLBP (lasting [≥]3 months in the previous year) and eight physiotherapists with [≥]2 years experience managing people with NSCLBP. ResultsThree shared themes were identified across both groups: (1) understanding the needs and requirements of PA; (2) perceptions of snack-based activity; and (3) factors influencing mobile health application use. Five subthemes were identified within themes one and three, together with two additional subthemes reported only by patients, relating to data sharing and technical issues. Both groups valued the time-efficiency and practical integration of snack-based activity, while highlighting the need for personalisation, age-appropriate content, accessibility and affordability. ConclusionsPhysiotherapists and patients emphasised the potential value of the snack-based PA approach in terms of adherence. However, both groups agreed that future intervention development should prioritise personalisation, user-friendly design, and equitable digital access. STRENGTHS AND LIMITATIONS OF THIS STUDYO_LIThis study uses Interpretative Phenomenological Analysis (IPA) to provide in-depth, dual-perspective insights from both people with non-specific chronic low back pain (NSCLBP) and physiotherapists on a novel snack-based physical activity approach for chronic non-specific low back pain. C_LIO_LIReporting adhered to the Consolidated Criteria for Reporting Qualitative Research (COREQ) 32-item checklist to ensure methodological transparency. C_LIO_LIThe sample included variation in patient age, ethnicity and physiotherapist experience, which broadened the range of views captured. C_LIO_LIAll participants were UK-based, which may limit the transferability of findings to other healthcare systems and cultural contexts. C_LIO_LIThe small sample size, although consistent with IPA methodology, and the use of single online interviews, may not capture longitudinal perspectives on sustained engagement. C_LI
Varela-Mato, V.; Ngina, D.; Orton, E.; Barnes, J.
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Background Parenting practices shape children's emotional, social, and cognitive developmental wellbeing. Yet, many families face complex challenges that increase the risk of poor outcomes and demand on social care. The Sutton Parenting Offer (SPO) is a universal, peer-led parenting offer that provides early, non-stigmatising support to families with children aged 0-25 years. It combines evidence-based programmes with informal workshops and peer networks delivered through Family Hubs. This present study is an evaluation protocol of the parenting offer. Aim This evaluation aims to explore how, why, and in what contexts SPO supports families in engaging, sustaining positive change, and generating wider system value. Methods A mixed-methods realist evaluation approach will be used to evaluate SPO across four work packages: engagement pathways, early changes and peer-led ecosystems, long-term change, and system value for money. Data sources will include attendance data (anonymised service records), survey data (entry and exit), and qualitative data (dyad interviews, story circles, and stakeholder-value mapping workshops). The COM-B and the Theoretical Domains Framework (TDF) will guide the analysis of behavioural data. Quantitative data will be analysed descriptively and using paired parametric and non-parametric tests, while qualitative data will be analysed thematically following a realist-informed approach to refine context-mechanism-outcome (CMO) configurations. Discussion This protocol presents the first realist informed evaluation of a universal parenting program in a local authority setting. The evaluation will generate evidence on how, when and why a universal, community-based, and peer-led model such as the Sutton Parenting Offer engages families and generates change. The findings will be useful to inform future parenting service design and implementation in local contexts in England.
Mahdikhani, S.; Cleary, F.; Cummins, S.
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Objectives: Endometriosis affects approximately 10% of reproductive age women worldwide, yet care pathways remain fragmented and treatments have limitations. This study aimed to identify and categorize key stakeholders in endometriosis care in Ireland, assess their influence and interest in the digital health initiative, and identify drivers and barriers affecting uptake of innovative approaches to care. Methods: A virtual stakeholder mapping workshop was conducted with participants from healthcare, policy, education, technology, academia, and patient communities. Using a structured MS Teams Whiteboard, participants generated a stakeholder list, positioned stakeholders on an Influence-Interest Matrix, and provided qualitative insights on factors enabling or constraining engagement with digital health innovation. Results: Stakeholders were distributed across all four quadrants of the matrix. High-interest/high-influence stakeholders included the HSE, specialist centres, general practitioners, and the Endometriosis Association of Ireland. High-interest/low-influence groups comprised patients, families, and online communities, while policymakers, hospital managers, and the education sector were identified as high-influence but low-interest actors. Key drivers included strong patient advocacy, institutional support such as engagement from the HSE, and growing awareness of digital health tools. Major barriers encompassed prolonged diagnostic delays, resource constraints, gaps in clinical knowledge, technology anxiety, and challenges sustaining engagement. Conclusions: Stakeholder mapping provided an evidence-informed foundation for the VendoR project, revealing engagement gaps and leverage points critical for improving endometriosis care innovation. The findings highlight the need for intentional, well-resourced strategies that elevate patient voices, address systemic barriers, and ensure balanced representation, supporting the co-design, co-creation, and co-production of digital health interventions for sustainable, patient-centred care.
Murchie, P.; Adam, R.; Naqvi, S. A.; Ntessalean, M.
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BackgroundThe COVID-19 pandemic significantly accelerated the adoption of telemedicine, but it also exposed gaps in effective remote clinical assessment, particularly for medically vulnerable patients in rural areas. The ORCHARD intervention aimed to address this by providing patients with a Medical Self-Assessment Box to enable self-reporting of vital signs during remote consultations. MethodsA single-centre randomised mixed-methods feasibility trial recruited medically vulnerable patients from a rural general practice in Northeast Scotland. Participants in intervention group received a home medical equipment box for use during telemedicine consultations over six months. Patients and GPs were interviewed and transcripts were analysed using Framework Analysis. ResultsTwelve (15%) of 82 eligible invited patients enrolled. Six each were allocated to intervention and control group. 50%(n=3)patients in intervention group used equipment in 45%(5 of 11)teleconsultations and rated it helpful in all 5 uses (100%). The intervention group had 18% fewer primary care contacts than controls. All remote consultations were by telephone. Framework Analysis of patient interviews identified facilitators such as ease of use, improved triage access, reassurance, and barriers related to GP non-engagement and written instructions. GP interviews identified clinical value in patient-generated readings, alongside concerns regarding workload and patient over-monitoring. ConclusionsHalf of intervention participants used the medical-equipment box during remote consultations, all finding it useful, though frequency of use varied among particpants.A randomised controlled trial to evaluate the effectiveness of the Medical Self-Assessment Box for optimising remote consulting in medically vulnerable rural patients is feasible.Prior to a definitive trial refinements are recommended to patient labelling, GP engagement, and training materials.
Glozah, F. N.; Maya, E.; Guure, C.; Sonalkar, S.; McAllister, A.; Doe, R.; Kaire, J.; Gaffield, M. E.
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BackgroundImplementation research relies on accurate measurement of early implementation outcomes such as acceptability, appropriateness, and feasibility. However, instruments developed in high income settings may demonstrate limited cross-cultural validity when applied in different health systems. In postpartum family planning, differences in counselling routines, workload, and service organisation mean that unadapted measures can overlook important aspects of provider experience. This study aimed to culturally adapt and psychometrically evaluate the Acceptability of Intervention Measure, the Intervention Appropriateness Measure, and the Feasibility of Intervention Measure when applied to postpartum family planning counselling and use of the World Health Organization Medical Eligibility Criteria mobile application among midwives and family planning nurses in Ghana. MethodsA sequential exploratory mixed methods design was employed. Three focus group discussions with 18 midwives and family planning nurses were conducted to culturally adapt the original measures developed by Weiner and colleagues. Insights from the qualitative phase informed revisions to the survey instrument. The adapted tool was subsequently administered to 150 midwives who had used the Medical Eligibility Criteria mobile application during one-on-one postpartum family planning counselling. Psychometric evaluation included assessment of internal consistency reliability, exploratory and confirmatory factor analysis, predictive validity, and tests of convergent and discriminant validity. ResultsThe adapted implementation outcome measures demonstrated strong internal consistency, with Cronbach alpha coefficients ranging from 0.82 to 0.93 across the three constructs for both the counselling intervention and the mobile application. Confirmatory factor analysis indicated acceptable model fit following minor modifications, supporting the unidimensional structure of the acceptability, appropriateness, and feasibility constructs. Predictive validity was demonstrated through significant associations between implementation outcome scores and providers preferences regarding counselling practices and use of digital tools. Although the expanded adapted scales showed high reliability, only the abridged versions consisting of four acceptability items and three items each for appropriateness and feasibility demonstrated full convergent and discriminant validity. ConclusionCulturally adapted versions of the Acceptability of Intervention Measure, Intervention Appropriateness Measure, and Feasibility of Intervention Measure can be reliably applied to evaluate postpartum family planning interventions among midwives and family planning nurses in Ghana. The findings suggest that the abridged versions of these measures retain stronger construct validity than expanded adapted versions, highlighting the importance of balancing contextual adaptation with preservation of the underlying measurement structure. Contributions to the literatureThis study advances the field of implementation science by demonstrating the process and value of culturally adapting and validating the acceptability, appropriateness and feasibility measures for use in a low- and middle-income country context. It provides empirical evidence supporting the reliability and construct validity of these measures in assessing the implementation of postpartum family planning interventions, including mobile health applications. The findings contribute to the broader goal of strengthening implementation measurement strategies in resource-constrained settings and offer a replicable model for adapting psychometric tools across diverse healthcare environments.
Jennett, C. J.; Bavor, C.; Saunders, T.; Whop, L. J.; Mitchell, L. E.; Canfell, K.; Taylor, N.; Velentzis, L.; Egger, S.; Brotherton, J. M.; Nightingale, C.; Smith, M. A.
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Background Since July 2022, Australian National Cervical Screening Guidelines have recommended anyone eligible for cervical screening be offered the choice between having their sample collected by a clinician with a speculum, or self-collection using a vaginal swab. Method We recruited screen-eligible people to an online survey between December 2023 and April 2024, via a paid social media (Meta) campaign, and stakeholder and community networks. Using binary logistic regression, we assessed demographic and screening history factors associated with having previously heard of self-collection. In participants screened since July-2022, we assessed factors associated with being offered a choice between self-collection and clinician-collection; choosing self-collection (among those offered choice); and using self-collection (among all recently screened participants). Results Of the 9,928 participants, 70.2% had heard of self-collection. Among those screened since July 2022, 36.1% were offered a choice in screening method. Awareness was associated with increasing age (p-trend <0.001), with participants aged >65 years most likely to have heard of self-collection (adjusted odds ratio (aOR): 1.69, 95% confidence interval (95%CI): 1.31-2.18). Compared to participants who self-reported regularly attending cervical screening, both not-regular and never screeners (based on self-reported screening history, frequency, age and sexual history) were less likely to have heard of self-collection (aOR:0.80 [95%CI:0.72-0.89] and aOR:0.73 [95%CI:0.56-0.96], respectively; p<0.001). Participants who attended a specialised womens/sexual health clinic were more likely to have heard of self-collection (aOR:1.32 (95%CI:1.06-1.64), p;<0.001), and to report being offered choice (aOR:1.62 (95%CI 1.22-2.14), p<0.001) at their last cervical screen. Half of the participants who were offered a choice opted for self-collection (N=803/1,617; 49.7%). Not-regular screeners were twice as likely (aOR:2.31 (95%CI:1.74-3.07), p<0.001) to choose self-collection as regular-screeners. Conclusion Given almost 50% of women nationally are now choosing self-collection, these findings imply national uptake might be close to plateauing overall. In high income settings where a choice in screening methods is introduced with the aim of improving screening equity, resources, adequate training, and health promotion tools should be provided prior to program launch to support healthcare providers in offering choice and facilitate improved participation in screening programs. Raising community awareness of screening options is important and needs to reach under-screened groups.
Sajnani, N.; Foster, M. W.; Oshodi, Y.; Sodimu, K. A.; Kolnik, M.; Pokorn, M.; Simpson, N.; Shaw, T.; Willmoth, S.; Marino, M.; Trinder, L.; Akisanya, E.; Onyekachi, E.; Bahr, E.; Blanchette, V.; Assistant, R.; Bolt, E.; Gong, Q.; Fenning, H. M.; Komolafe, D. O.; Murden, R.; Omuku, N.; Rowe, C.; Sanhueza, C.; Steer, T.; Trupp, M. D.; White, N.; Wu, Y.
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ObjectiveThis study investigated how hospital murals influence the experiences of patients, healthcare staff, and visitors across four sites. BackgroundEvidence shows that visual art in healthcare settings can improve well-being but few studies focus specifically on murals or compare their effects across cultural contexts. The Hospital Murals Evaluation project addresses this gap through an investigation of murals in hospitals in Nigeria, Slovenia, the United Kingdom, and the United States. MethodsUsing a mixed methods cross-sectional design, the study integrated surveys, interviews, and participatory photography. A total of 525 unique responses were collected from 229 patients (131 adult, 98 pediatric), 245 staff, 49 visitors, and 2 undisclosed. ResultsInterviews across all three participant groups (n=115) revealed themes of positive affects, perception of care, as well as stress or indifference. Surveys (n=327) showed moderate positive correlations between mural viewing and positive emotions among patients, and between mural exposure and well-being, positive emotions, social connection, and workplace belonging among staff in the UK and USA, with null findings for staff in Nigeria and Slovenia. Participatory photography (n=83) illustrated how murals conveyed comfort, though abstract or poorly placed murals sometimes evoked discomfort. Meta-inferences across the methods indicate that viewing murals were associated with positive emotions for patients and did not induce negative emotions for staff or visitors. ConclusionMurals act as health-promoting infrastructure that can enhance well-being, foster positive experiences, and signal intentions of care. The findings highlight the need for culturally attuned designs to create healthcare environments that nurture well-being.
Bennett, J.; Pakhale, S.; Desmond, N.
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Aims Moral distress has been studied across many health arenas; however, public health has often been overlooked. Canada is facing a healthcare crisis with a significant number of staff leaving the healthcare field. This study explores the experiences of moral distress in public healthcare practitioners across Canada. Better understanding these experiences can provide insights into how to support staff and prevent attrition in public health. Methods This was a cross-sectional qualitative study. Fifteen in-depth interviews were conducted between May and July 2023, through remote and in person methods. Participants were from nursing, social work, medicine, and dietetics, all working in public health across Canada. Iterative thematic analysis was used. Emergent themes were compared within and across data sets and by participant age and years of experience. Results/Findings Experiences that contributed to moral distress included systemic powerlessness, political and ideological overreach, unethical work environments and undervalued expertise. Years of experience and diversity in gender and ethnicity impacted how practitioners navigated moral distress. Experiences where practitioners felt actions went against their values increased during the pandemic, contributing to moral injury. Conclusions This study situates the unique position of public health within the health system and explores experiences of moral distress both during and outside the COVID-19 pandemic. While the pandemic brought the concept of moral distress to the forefront of many peoples minds, these experiences existed prior. Addressing the underlying causes will contribute to establishing approaches to support public health practitioners suffering from moral distress and injury.
Coombe, J.; Goller, J. L.; Bittleston, H.; Felix-Faure, C.; Williams, H.; Caddy, C.
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There are several barriers to uptake of intrauterine devices (IUDs), with the fear of pain during insertion an emerging concern. Using data from an online survey, we sought to understand the experience of women who had undergone IUD insertion, with a particular focus on their expectation compared with their reported experience of pain. We found that, while most participants expected a moderate level of pain at insertion, many reported a high level of pain. Pain relief offered was variable, and, aside from that administered by an anaesthetist, no single method appeared to significantly reduce reported pain.
Ekong, A.; Nicoll, A.; Locock, L.; Fairley, T.; Devane, D.; McDonagh Hull, P.; Braithwaite, L.; Ade, M.; Hidvegi, I.; Saldias, N.; Taylor, G.; Williams, D.; Bhattacharya, S. B.; Black, M.
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Background A mode of birth decision aid (DA) can provide information and support discussions about the potential risks and benefits (outcomes) associated with planning a vaginal or caesarean birth. Evidence shows that DAs can enhance patient knowledge, reduce decisional conflict, minimise inconsistencies in decision-making support, especially in maternity settings, and promote informed decision making. Despite these benefits, DAs specific to mode of birth are currently lacking in routine antenatal care. This paper outlines the process we followed to reach consensus on which outcomes of planned mode of birth should be included in a mode of birth DA. Methods Outcome identification and selection occurred in three phases. Phase 1 involved compiling a long list of outcomes from systematic reviews, the NICE Caesarean Birth Guidance and qualitative interviews with stakeholders. In Phase 2, this list was refined via a 2 round Delphi survey to prioritise outcomes considered important. An outcome reached consensus if [≥]70% of all participants, or 70% of women/partners rated it as critically important (7-9), and <15% rated it as not important (1-3). Phase 3 involved two stakeholder consensus meetings to finalise the outcome list. Results Seventy-one outcomes were identified. Following two Delphi rounds and consensus meetings, 54 outcomes were rated as critically important. Seventeen outcomes were consistently rated as not critical across both the survey and consensus phases, meaning that [≥]70% of participants in each phase did not consider them essential for informing women during pregnancy. Of these, 8 were retained due to NICE recommendations and ultimately, 9 outcomes were excluded. The final list included 44 maternal and 18 child outcomes. Maternal outcomes related to assistance with birth, complications at the time of birth, issues during recovery, pelvic floor, psychological issues, sexual function, and future pregnancy. Child outcomes related to morbidity and death, disease, obesity, issues with cognitive development and physical development. Conclusions Sixty-two priority outcomes were identified for inclusion in a planned mode of birth DA.