Health Expectations
○ Wiley
Preprints posted in the last 30 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.
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
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.
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.
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.
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.
Janetzki, J.; Modi, N.; Varney, B.; Pratt, N.; Ward, M.; Wiese, M.; Lim, R.; Kalisch Ellett, L.
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Background Fertility rates in Australia have been declining over recent decades, reaching a record low total fertility rate of 1.48 births per woman in 2024. Concurrently, vasectomy remains widely accessible and increasingly normalised as a permanent contraceptive option. Despite extensive commentary on falling birth rates, no contemporary Australian study has examined vasectomy rates relative to birth rates over time. We aimed to compare population level vasectomy and birth rates across Australian jurisdictions and age groups. Study design Nationwide retrospective time-series study. Retrospective population-based study using Medicare Benefits Schedule item 37623 to identify vasectomy procedures performed between July 2015 and December 2024. Rates were calculated per 100,000 male population using quarterly Australian Bureau of Statistics (ABS) population estimates and summarised as rolling 12-month averages. Birth rates were derived using matched ABS data for women across equivalent age strata (18-24, 25-34, 35-44 years). Results: Vasectomy rates increased nationally from 32 per 100,000 in 2016 to 55 per 100,000 in 2023 before declining modestly in 2024. Birth rates declined from 5,200 to 3,800 per 100,000 over the same period. Trends were consistent across states and age groups, with the greatest vasectomy uptake in men aged 35-44 years. Conclusion: Australia is undergoing a demographic shift characterised by rising vasectomy uptake and declining fertility. While vasectomy rates remain lower than birth rates, their convergence signals changing reproductive intentions and contraceptive behaviours. Ongoing monitoring of permanent and long-acting contraception is essential to understand evolving population dynamics and inform reproductive health policy.
Timilshina, N.; Jacobson, D.; Birze, A.; Wodchis, W. P.; Kuluski, K.; Strumpf, E.; Ammi, M.
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Introduction The COVID-19 pandemic profoundly disrupted healthcare delivery worldwide, with cancer care among the most affected services. Prior studies documented delays in referrals, reduced specialist access, and increased provider burden. However, the extent to which these experiences were reflected at the system level remains unclear. Objective To document cancer care experiences and examine whether these experiences were reflected in population-level health system indicators across Ontario, Canada. Methods We used an exploratory sequential mixed-methods design. Qualitative data were collected through focus groups and semi-structured interviews with 32 participants, including patients with cancer (n=8), caregivers (n=5), healthcare providers (n=14), and decision-makers (n=5) across two hospital settings in Ontario, Canada. Emergent themes informed the development of quantitative indicators. We then conducted a retrospective population-based analysis of linked administrative health databases for cancer patients in Ontario (n=87,786) to assess the prevalence of identified themes. Results Four themes emerged: (I) delays in diagnosis and screening; (II) disrupted access to primary care; (III) barriers to specialist and mental health services; and (IV) fragmented care for patients with multimorbidity. Quantitative findings corroborated major themes. Screening rates declined for cervical (64.8% to 57.5%) and breast cancer (64.5% to 57.2%). While in-person primary care shifted almost entirely to virtual modalities (8.5% to 95.4%), overall visit volumes remained stable. Specialist care showed uneven patterns, with increased oncology visits but declines in cardiology and mental health services. Patients with multiple comorbidities experienced the largest reductions in non-oncology specialist care. Conclusion The pandemic disrupted key components of cancer care, particularly screening, access to certain specialist services, and care for patients with complex needs. Integrating qualitative and quantitative evidence highlights areas of system vulnerability and underscores the need for coordinated, resilient cancer care capable of maintaining essential services during future crises.
Smeeth, D.; Keynejad, R. C.; Catalao, R.; Luck, G.; Wood, D.; Wilson, C. A.
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BACKGROUND: The UK National Institute for Health and Care Excellence recommends routine enquiry about domestic violence and abuse (DVA) in maternity care. We aimed to explore patterns and predictors of DVA enquiry during routine first antenatal care ( booking) appointments with midwives in South East London. METHODS: We conducted an observational cohort study using cross-sectional data collected through the St Thomas Hospital midwifery service between 1st January 2019 and 31st March 2023. Pseudonymised data were extracted from maternity records, comprising demographics, mental and physical health information, social factors, and DVA enquiry. We used linear mixed modelling to test associations between predictors and DVA enquiry. RESULTS: The dataset comprised 7,932 booking appointments with 7,007 women (median age: 32 years; ethnicity: 52% White, 27% Black, 7% Asian, and 15% other). Enquiry was made about current experiences of DVA in 79.4% of appointments. Black-identifying women (OR=1.28, 95% CI [1.11,1.46]) and those born in Sub-Saharan Africa (OR=1.37 [1.14,1.64]) were more likely to be asked than white-identifying and UK-born women. Single women were more likely to be asked than married or cohabiting women (OR=1.22 [1.08,1.38]). Those living in more deprived neighbourhoods were more likely to be asked (OR=1.07 [1.01,1.14]). Multivariable modelling found that being born in Sub-Saharan Africa or Southern Europe, and living alone but with additional support were all associated with increased DVA enquiry, while being born in North America or requiring an interpreter were associated with decreased enquiry CONCLUSIONS: Despite recommendations for routine DVA enquiry during all booking appointments, a substantial proportion of pregnant individuals were not asked between 2019 to 2023. Predictors of DVA enquiry reflected practical barriers (e.g. language), and known or perceived predictors of DVA risk (e.g. deprivation). Our findings suggest that midwives consciously or unconsciously prioritise DVA enquiry for women they believe are at greatest risk, against national guidelines.
Carlisle, N.; Zhang, M.; Simpson, N.; Stacey, T.
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Background Tobacco smoking during pregnancy increases the risk of preterm birth, small for gestational age (SGA), stillbirth, and longer-term adverse health outcomes. Globally, reducing smoking in pregnancy is a key public health priority, yet the organisation, accessibility, and effectiveness of cessation support varies substantially between countries and healthcare systems. Differences in policy implementation, resource allocation, and integration of cessation services into antenatal care influence uptake and success rates across diverse settings. In England, pregnant women are entitled to free smoking cessation support, however, service delivery varies across regions with mixed efficacy. While tobacco smoking is more prevalent in deprived communities, there is limited understanding of how, why, for whom, and under what circumstances these services are most effective, particularly in areas of social deprivation, such as the North East and Yorkshire. Objective To conduct a realist evaluation to understand how smoking cessation services support pregnant women in areas of social deprivation to stop smoking and reduce adverse perinatal outcomes. Methods This multi-site realist evaluation will be conducted across three NHS maternity services in West Yorkshire, England. The study comprises four iterative stages: (1) development of initial programme theories through realist-informed literature scoping and stakeholder consultation; (2) case study data collection including qualitative interviews with pregnant women (approximately 15-30) and staff (approximately 15-30); (3) analysis of routine anonymised maternity and neonatal electronic data collected over a one-year period; and (4) realist analysis to refine context-mechanism-outcome (CMO) configurations. Qualitative data will be analysed using realist logic supported by NVivo software. Quantitative data will be analysed using descriptive and inferential statistics to explore associations between smoking cessation engagement and perinatal outcomes. Ethics and dissemination Ethical approval was obtained through the UK Health Research Authority and a Research Ethics Committee prior to study commencement (IRAS 364173; REC reference number 26/SC/0020). Findings will inform recommendations to improve smoking cessation support for pregnant women in deprived areas. Results will be disseminated through peer-reviewed publications, conference presentations, and stakeholder engagement.
Asher, L.; Rapiya, B.; Chiliza, B.; Hanlon, C.; Petersen, I.; Brooke-Sumner, C.
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Background People with severe mental health conditions (SMHC) and caregivers in South Africa experience high rates of poverty. The PRIZE feasibility trial found that recovery groups were broadly acceptable and feasible and potentially effective in reducing relapse. Addressing economic needs was identified as a means to increase impact. This study aimed to understand experiences of financial insecurity and acceptability of poverty alleviation interventions as an adjunct to psychosocial interventions amongst people with SMHC and caregivers. Methods We conducted two focus group discussions and 12 in-depth interviews in isiXhosa with a total of 14 people with SMHC and 13 caregivers who had participated in PRIZE in Eastern Cape Province, South Africa. An inductive thematic analysis was conducted. Results We identified four major themes. Theme 1: Financial insecurity as a defining influence on life. We found that financial security was crucial to recovery, through bringing status and dignity. However, participants experienced substantial financial insecurity, which impacted on social and mental wellbeing. Financial insecurity was entrenched due to fractured and violent communities, cycles of debt and stigma amongst employers. Theme 2: Government disability grants are not a panacea. Difficulties accessing disability grants included problems attending assessments and rejection of applications. Whilst they were generally welcomed, receipt of disability grants sometimes caused problems such as increased stigma and family disagreements about how the money should be spent. Theme 3: Group savings offer conditional hope if carefully managed. Several caregivers had longstanding experiences of stokvels (community-based credit unions). However, some were fearful of group members absconding with funds. Participants emphasised that trust, safety and fairness are essential for successful group savings. Theme 4: Income-generating activities are desired but need capital and come with safety concerns. Many had ideas and motivation for small businesses but stressed the need for financial capital, skills training and financial literacy support. There were serious concerns that owning a business or gaining wealth could make one a target of crime. Conclusion Poverty alleviation interventions could positively impact on the wellbeing of people with SMHC and caregivers in South Africa as an adjunct to psychosocial interventions and psychiatric care. Approaches could include supporting access to social protection or existing savings groups, and nesting new savings groups or income generation initiatives into psychosocial interventions. Any model would need to incorporate robust mechanisms to ensure the safety of participants. All approaches would be enhanced by parallel social and public health interventions to build social capital and reduce violence in neighbourhoods.
Edwards, P. J.; Caddick, B.; Skeen, A.; Lin, J.; Ridd, M. J.; Barnes, R. K.; Salisbury, C.
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Background In 2024, one-third of GP appointments in England were conducted by telephone. What happens during these consultations is largely unknown. Aim To test the feasibility of collecting recorded GP telephone consultations with linked data and consent for future research use. Design and setting Retrospective observational study in seven practices in South West England. Method Adults who had a telephone consultation at practices that routinely record calls were invited to consent to retrieval of call audio, a 4-month electronic health record (EHR) extract and a post-consultation patient questionnaire. Practice-level consent rates were analysed using regression models. Results Of 28 clinicians recruited, 19 GPs had consultations with patients whose recordings were retrievable, usable, and consented for future research. Of 2,053 invitations, 123 patients consented (6.0%). Consent was lower in more deprived practices (IMD 1-2 vs 9-10: OR=0.22, 95CI=0.09-0.54). Of 101 recordings retrieved, 96 were usable and 91 had consent for future research. 86/91 were linked to EHRs and 89/91 to post-consultation patient questionnaires. Mean consultation duration was 7 minutes 13 seconds; audible typing was heard in 69% (63/91). 161 problems were discussed (mean 1.77 per consultation). Most patients were happy their consultation was by telephone (96/117, 82%), although the majority reported usually preferring face-to-face appointments (68/115, 59%). Conclusion It is feasible to assemble a reusable archive of GP telephone consultations with linked data. However, recruitment was low using retrospective remote consent. Future work should test alternative recruitment approaches, particularly to improve patient engagement at practices serving deprived populations.
Tremblay, M.-C.; Iradukunda, E.; Cassivi, C.; Breault, P.; Briere, E.; Collerette, C.; Fletcher, C.; Renaud, J.-S.; Beaulieu, M.
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Introduction Indigenous peoples in Canada face persistent health inequities rooted in colonialism, systemic racism, discrimination and social exclusion, all of which operate with particular intensity within healthcare institutions. Despite a growing qualitative literature documenting the discrimination and stigmatisation of Indigenous people by healthcare professionals, no validated instrument existed in the Canadian context to measure the stigmatizing attitudes and behaviors of clinicians toward this population. Aim This study aimed to co-develop and validate an instrument using clinical case vignettes designed to capture the affective, cognitive, and behavioral dimensions of stigmatization of indigenous peoples. Method Following Boateng et al.'s three-phase scale development approach, a multidisciplinary team including Indigenous patient partners, researchers, clinicians, and measurement experts generated 244 items across three paired clinical vignettes addressing type 2 diabetes, chronic back pain, and depressive disorder. Each vignette was developed in two versions, one featuring an Indigenous patient (test) and one featuring a non-Indigenous patient (control), distinguished solely by name and origin. Content validity was assessed by an expert committee using a Content Validity Index. The instrument was subsequently administered to a sample of nurses and physicians from two canadian health institutions using a twelve-arm randomization design. Analyses were carried to assess the internal structure of the instrument, convergent and concurrent validity as well as internal consistency. Results Our results show that the instrument developed has good psychometric qualities, particularly in terms of internal consistency, concurrent validity and factor structure, which reflects the theoretical structure assumed. Concurrent validity of the tool with the M-PATAS scale demonstrated weak to moderate significant correlations. Developed through a participatory process centering Indigenous expertise and lived experience, this instrument constitutes a significant methodological advance in the study of racialized stigmatization in Canadian healthcare.
Alvarado-Torres, R.; Kakauridze, I.; Bonnevie, E.
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Youth in the United States are experiencing growing mental health challenges, yet many face barriers to accessing timely, affordable, and stigma-free support. At the same time, artificial intelligence (AI) chatbots have become widely available and are increasingly being used by young people as tools for information seeking, coping, and self-reflection. This brief report explores how youth are engaging with AI chatbots for mental health support, drawing from qualitative interviews conducted in New Jersey. Nine semi-structured interviews were completed with participants ages 19-22. Thematic analysis revealed five core themes: (1) generational change, peer communication, and humor as coping and normalization tools; (2) internal and external barriers to self-recognition and help-seeking; (3) AI chatbots as a safe and accessible first step; (4) AI chatbots as a tool for filling information gaps; and (5) limits of AI chatbots and the preference for human connection. These findings indicate that young people see AI chatbots as private, judgment-free starting points for exploring their emotions and seeking early support. However, they also recognize that these tools cannot replace human connection or professional care. For public health, this presents both challenges and opportunities in utilizing the accessibility of AI chatbots while ensuring ethical design, cultural responsiveness, and protections that safeguard youth privacy and equity.
Olatosi, O. O.; Baltus, T. H. L.; Mittermuller, B.-A.; Fux, S.; Monayao, A.; Lee, J.; Menon, A.; Yerex, K.; Goubran, S.; Schroth, R. J.
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Background: Access to dental care remains a significant challenge for many children in Canada, particularly among low-income and underserved populations. The Interim Canada Dental Benefit (CDB), introduced in October 2022, aimed to reduce financial barriers to oral health care for children under 12 years of age while the Canadian Dental Care Plan (CDCP) was being developed. While emerging evidence has examined program uptake, limited qualitative research has explored parents and caregivers experiences with the Interim CDB. Objective: This study aimed to explore parents and caregivers experiences with the Interim CDB in Manitoba, Canada, including awareness, access, perceived benefits, challenges, and recommendations for program improvement. Methods: A qualitative descriptive study was conducted using semi-structured interviews with 30 parents and caregivers of children under 12 years of age. Participants were recruited primarily through community dental clinics. Interviews were conducted between July 2023 and February 2024, audio-recorded, and transcribed verbatim. Data were analyzed using inductive thematic analysis to identify key themes and subthemes. Results: Seven interconnected themes were identified: (1) limited and uneven awareness of the Interim CDB; (2) inadequate and inequitable communication strategies; (3) barriers to accessing the benefit, including misconceptions about eligibility and complex application processes; (4) dental providers as key facilitators of access; (5) financial relief and improved access to care; (6) gaps in coverage and ongoing financial strain; and (7) participant-driven recommendations for improvement. While the benefit was widely perceived as reducing financial barriers and enabling access to care, challenges related to awareness, communication, and adequacy of coverage limited its overall effectiveness. Participants emphasized the need for improved communication from government, simplified application processes, expanded eligibility, and increased financial support. Conclusion: The Interim CDB represents an important step toward improving access to dental care for children in Canada. However, this study highlights critical implementation gaps related to awareness, accessibility, and coverage. Addressing these challenges will be essential to ensuring the success of the new CDCP and advancing equitable access to oral health care.
ROBIN, J.; Ly, M.; Niangaly, H.; Schantz, C.; Keita, A.; Kante, K.; Ridde, V.
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BackgroundBreast cancer is an increasing public health concern in many low- and middle-income countries, yet prevention and care decisions do not consistently rely on evidence. In Mali, patient associations are increasingly visible in cancer advocacy, but their potential role in mediating research and experiential knowledge within decision-making remains poorly understood. This study adopts a systemic perspective on knowledge transfer to examine the conditions under which a patient association-led knowledge intermediation mechanism could plausibly emerge and be embedded within breast cancer governance. MethodsWe conducted a qualitative pre-implementation study based on 29 semi-structured interviews, one focus group, and participant observation involving patient association members and leaders, health professionals, researchers, decision-makers, international partners, and media representatives. Data were analysed using an adapted version of the Consolidated Framework for Implementation Research to guide construct-based coding, followed by cross-domain analysis to identify clusters of interacting determinants synthesised into broader analytical configurations. ResultsAnalysis identified three configurations shaping the plausibility of patient association-led knowledge intermediation in breast cancer governance, across institutional, organisational, and epistemic dimensions. First, fragmented institutional arrangements, project-based financing, and discontinuous coordination limit the stabilisation of interfaces and continuity of interactions, thereby constraining the emergence of sustained knowledge transfer processes. Second, patient associations hold strong experiential legitimacy and mobilisation capacity, but their ability to assume intermediation roles is constrained by stigma, limited confidence in engaging with scientific and policy-relevant knowledge, restricted access to data and analytical resources, and weak integration into institutional decision-making spaces. These constraints are also shaped by gendered illness trajectories and social expectations that affect womens ability to engage publicly and the recognition of experiential knowledge as policy-relevant evidence. Third, competing framings of cancer problems, combined with institutional norms privileging biomedical and quantitative evidence, narrow the range of knowledge considered actionable, limiting the integration of experiential and contextual knowledge into decision-making. Together, these configurations identify the interdependent conditions shaping the emergence, functioning, and durability of association-led knowledge intermediation mechanism. Without simultaneous alignment of institutional, organisational, and epistemic conditions, intermediation is likely to remain partial, episodic, and weakly sustained. ConclusionThese findings suggest that association-led KT cannot rely on patient associations alone, nor on capacity-building alone. It requires implementation strategies that build structured interfaces enabling patient associations, researchers, clinicians, and decision-makers to jointly interpret and translate heterogeneous forms of knowledge into actionable inputs, while addressing the gendered conditions of womens engagement and the uneven recognition of experiential knowledge in institutional evidence use. Further research is needed to test how such relational configurations can be operationalised and sustained in constrained health systems.
Mackenzie, A.; Smit, J.; Miric, M.; Edelman, A.; Beksinska, M.; Catano, A.; Chung, S.; Cuevas, E.; Delacerda, M.; Forbes, M.; Hoppes, E.; Ingeno, L.; Jacobson, L.; Khomo, M.; Lebetkin, E.; Majola, T.; Matos, M.; Mavundla, M.; McCaffrey, S.; Mendez, A.; Mendez, M.; Mhlaba, N.; Mosery, N.; Ndlovu, L.; Qiya, B.; Stankevitz, K.; Sullivan, A.; Zulu, B.
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Objective: To address the need for improved measurement of the ways contraception impacts the baseline menstrual cycle (i.e., contraceptive-induced menstrual changes; CIMCs) by assembling an interdisciplinary, global research collective to rigorously develop a person-centered measure for CIMCs in multiple languages. As the first step, this paper reports on our conceptual model development, which is the foundation for ongoing measure development. Study design: We conducted 18 focus groups with 106 people experiencing CIMCs while using hormonal or intrauterine contraception in Durban, South Africa, Santo Domingo, Dominican Republic, and Portland Oregon, United States. We used a virtual affinity mapping approach to analyze qualitative data, which was the basis of our conceptual model along with relevant theory and related models in the literature. Results: The conceptual model of experiences with CIMCs depicts the baseline menstrual cycle, including CIMCs and conceptually-linked effects and the impacts and perceptions of those CIMCs. We found key domains of changes in pain, bleeding volume, bleeding patterns, and characteristics of blood. Conclusion: Our CIMC conceptual model will inform development of a measure with evidence of validation across three language and global contexts. Adoption of a person-centered, standardized CIMC measurement across trials will improve knowledge and decision-making between methods.
Black, M.; Robertson, C.; Cruickshank, M.; Ekong, A.; Manson, P.; Kemakolam, O.; Steel, O.; Richards, C.; Harshani, P.; Merriel, A.; Devane, D.; Bhattacharya, S.; Williams, D.; Brazzelli, M.
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Background Planned caesarean birth (CB) is an increasingly utilised intervention, observed in almost 1 in 6 first-time mothers giving birth in the UK in 2023-24. Outcomes of planned (or actual) CB have been compared with planned (or actual) vaginal birth (VB) in a UK national guideline, but the scope of the comparison does not fully reflect the range of outcomes of interest to stakeholders. This review provides a comprehensive synthesis of outcomes of planned or actual CB with planned or actual VB to shape information resources which support informed birth planning. Methods The UK NICE Caesarean Birth Guideline NG192 evidence review of outcomes associated with planned CB (or actual CB where no planned CB data was available) was updated and expanded to incorporate additional outcomes prioritised by stakeholders. Results A total of 33 new study reports were combined with 32 reports previously included in NG192. All new reports were observational cohort studies or systematic reviews at low risk of bias. Only 3 studies reported outcomes of planned CB compared with planned VB (regardless of actual mode of birth), whereas all remaining studies reported actual VB outcomes. Planned CB was followed by more maternal infection (wound infection, mastitis, endometritis and urinary tract), venous thrombosis and lower neonatal unit admission rates than a planned VB. In the long-term, CB was linked to one or more sexual problems (insufficient lubrication and dyspareunia) being more common, future pregnancy being less common, and infertility being more frequent than after VB. For offspring, infant urinary tract infection after any CB, gastrointestinal tract infections and autism after planned CB were more common compared with VB. New findings highlight conflicting reports on childhood asthma and type 1 diabetes risk after planned CB, suggesting that prior positive associations may be explained by confounding. Existing evidence in NG192 suggests that cardiac arrest, maternal death and hysterectomy are more common after planned CB, but arise from studies at high risk of bias. NG192 also reports that placenta accreta and uterine rupture in a future pregnancy are more common after any CB. No new evidence was identified on these outcomes. Conclusion This review provides stakeholder-relevant information to populate decision-support materials on outcomes of planned (and actual) CB compared with planned (and actual) VB. The existing evidence base lacks data on long-term outcomes of planned (rather than actual) VB.