Health Expectations

People with a learning disability experience marked health inequalities. In Wales, Acute Learning Disability Liaison Services (ALDLS) are delivered by specialised learning disability services, and all roles within them are undertaken by Learning Disability Liaison Nurses (LDLN). These services aim to enable access to, and delivery of, secondary care by supporting reasonable adjustments, facilitating communication, and coordinating care for people with learning disability during hospital encounters. However, independent evidence of the impact of ALDLS on patient care remains limited. This evaluation tries to address this evidence gap by examining hospital staff perceptions of the visibility, role, and impact of ALDLS across Welsh Health Boards, with the aim of informing service design and development and improving secondary care access and care for people with learning disability. The service evaluation used a qualitative approach involving interviews and a focus group with hospital staff across the seven Welsh Health Boards who had experience working with or interacting with ALDLS staff to care for patients with learning disability. Findings cover six key areas including i) visibility and delivery of ALDLS, ii) Barriers and challenges to effective ALDLS delivery, iii) Enablers of effective ALDLS delivery, iv) Positive impacts for patients with learning disability, v) Negative impacts and unintended consequences when the service is absent or limited, and vi) Participants recommendations for future improvements of ALDLS. To synthesise the findings, we developed an overview diagram, which illustrates how ALDLS may influence care quality in acute hospitals. The overview places the liaison service at the centre, showing how organisational enablers and barriers shape its delivery, and how its core functions support improvements in safety, timeliness, effectiveness, efficiency, equity, and patient-centred care. From the findings we have identified recommendations for practice and policy. These include that ALDLS should be recognised as a core, safety-critical component of acute hospital care for people with a learning disability, rather than an optional add-on. In practice, services should be more visibly embedded within routine pathways, with consistent site-based presence, clear referral criteria, early identification through electronic flagging and notification systems, and routine involvement in multidisciplinary planning for complex admissions and procedures. At policy level, ALDLS provision should be recognised within equality and patient safety frameworks as an essential service requiring sustained investment, national minimum configuration standards, adequate staffing, and better-integrated digital systems to support continuity, equitable access, and person-centred care.

Background: Long Covid affects millions worldwide and disrupts the personal, professional, and social lives of those affected. Yet, insights on the day-to-day experience of living with Long Covid, how people adapt to the condition, and how they experience care remain limited. Methods: Between November 2024 and February 2025, we recruited people living with Long Covid through Long Covid related studies and patient networks. Data were collected through a one-time semi-structured survey, completed using a speech-to-text feature with automatic transcription, and addressing 1) key events and experiences, 2) coping and support strategies, and 3) advice to others affected. We applied an inductive thematic analysis to develop a framework of key themes. Results: We included 137 participants (median age 48 years, 73.7% women, median three years since SARS-CoV-2 infection). Analysis yielded 13 sub-themes within four key themes: medical issues; social, occupational and health care impact; barriers to recovery; and resources and strategies. Participants described a broad range of symptoms, most notably fatigue, cognitive difficulties, post-exertional crashes and psychological symptoms including depression and, in some cases, suicidal thoughts. These symptoms profoundly disrupted their social, working and family lives. In severe cases, independent living became impossible, with social isolation, severely reduced activity, and financial difficulties. Many described a long diagnostic journey in which symptoms were frequently dismissed as psychological and early advice to stay active that worsened their condition. The health care and social security systems were seen as ill-equipped to support people affected by Long Covid. With no effective causal therapies, treatment focused on symptom relief and participants tried many complementary and alternative treatments. Pacing was the only strategy widely used and perceived as effective in preventing crashes, alongside lifestyle adjustment, peer support, and maintaining hope. Conclusion: These narrative accounts reveal a multidimensional burden of Long Covid, one that is exacerbated by how affected people are treated within the health and social systems. These findings underscore the need for empathic, knowledgeable care, validation of people's experiences, and policy frameworks equipped to recognize and support people with Long Covid. Patient or Public Contribution: This study is about the lived experiences of people affected by Long Covid. During the conceptualization phase, we consulted three people with lived experience of Long Covid to discuss the relevance of the research questions and study design. All participants received a newsletter with a plain language summary of interim findings. Following completion of this analysis, we conducted a focus group discussion with eight participants to validate our findings, identify gaps, and ensure that the findings accurately reflected their experiences. Feedback from this process informed the final manuscript.

Objectives Despite their higher risk of stroke and known inequities in post-stroke outcomes, research amongst minoritised ethnic communities who have experienced stroke is scarce. This study aimed to explore the experiences of Black people in England and identify implications for supported self-management. Methods Between December 2023 and June 2024 qualitative interviews were conducted with 20 Black people living with stroke in England. Interviews were conducted in-person or online, depending on participants preferences. Data were analysed iteratively using reflexive thematic analysis. Results Three themes were developed: (1) My world after stroke capturing emotional and social identity-related impacts and adjustments; (2) My support: Family, Community and Peers, encapsulating different facets of support and the relational nature of self-management; and (3) Supported self-management as a negotiated partnership with healthcare professionals, highlighting the varied nature and outcomes of patient-professional interactions and their social embeddedness, including underlying power and historical racial dynamics. Conclusions Our study confirms the need for closer examination of how supported self-management can be provided to different populations. The post-stroke experiences of the Black people who participated in our study were inextricably shaped by their specific familial, social and cultural settings. Their adaptation to and management of the physical and emotional aspects of their condition was enacted across family systems, community and peer networks as well as healthcare services, with varying outcomes. In addition, their interactions and engagement with healthcare professionals were influenced by a broader historical context of discrimination and racism. Our study reveals the importance of delivering supported self-management to Black people living with stroke which responds to their specific social contexts and intersectional identities and which also strives to reduce power imbalances and address historical discrimination, thereby ensuring cultural safety in service provision. Overlooking these aspects risks undermining self-management and underserving those who already face significant health inequities.

Ethnic minority and migrant populations experienced disproportionately severe COVID-19 outcomes across Europe, yet the mechanisms underlying these disparities, particularly inequities in healthcare access, remain insufficiently understood at the patient level. This qualitative study examines healthcare-seeking behaviours and access to care among ethnically diverse patients hospitalised with COVID-19 in Amsterdam between 2020 and 2022, and the contextual factors shaping their pathways to care. Twenty adults of Turkish, Moroccan, Surinamese, Ghanaian, and Dutch ethnic backgrounds, all hospitalised with COVID-19, were interviewed using a semi-structured retrospective approach to reconstruct individual care pathways from symptom onset to hospitalisation. Data were analysed thematically, guided by the Candidacy Framework and the Health Belief Model. Pandemic-induced structural disruptions, including healthcare system strain, capacity shortages, absent care protocols, and fragmented referral pathways, constituted the primary barriers to care across all ethnic groups. Participants with longer hospital stays tended to be older, less educated, and with more comorbidities, yet reported fewer barriers once hospitalised, as disease severity triggered prioritisation. Those with shorter stays or emergency department visits without admission encountered greater difficulties, including repeated discharge despite worsening symptoms. Language barriers and prior negative experiences with healthcare services compounded access challenges for some participants with migrant backgrounds, though pandemic phase and disease severity were the dominant determinants across the sample. Inequities in access to care were driven primarily by pandemic-induced structural factors rather than ethnic background. Pre-existing vulnerabilities among migrant groups, including reduced institutional trust and language barriers, intensified these structural barriers for some. These findings are directly relevant for equity-sensitive pandemic preparedness: crisis response frameworks must explicitly address structural accessibility alongside targeted support for groups facing compounding disadvantage.

Background Effective communication during consultations is facilitated by clinical empathy and realistic optimism, and can enhance patient satisfaction with care, alleviate symptoms, and improve quality of life. However, primary care systems are under significant strain and changing rapidly, which may affect practitioners' ability to communicate empathically and convey realistic optimism, with implications for the patient-practitioner relationship and patient outcomes. Understanding patients' perspectives of healthcare communication in the current clinical context is therefore important. We aimed to explore patients' experiences and perceptions of communication in UK primary care consultations, focussing on the communication of clinical empathy and realistic optimism. Methods A qualitative interview study was conducted as part of a multi-centre cluster-randomised trial of EMPathicO, a brief e-learning package for Primary Care Practitioners (PCPs) on communicating clinical empathy and realistic optimism. Participants were not aware whether their general practice had access to EMPathicO or not. Interviews were conducted within 7-14 days of participants' consultations, explored their views and experiences of clinical empathy and realistic optimism, and were transcribed verbatim. Interviews were analysed using Ritchie and Spencer's Framework Method. Results We conducted semi-structured audio-recorded qualitative telephone interviews with 71 participants from 29 primary care practices taking part in the EMPathicO trial. Following comprehensive mapping of data to the framework derived following initial analysis, four themes were agreed. Overall, most participants described positive empathic consultations with their PCPs, however, participants' experiences were shaped by wider systemic and contextual factors. They described a stretched and inefficient primary care system impacting empathy and optimism; the impact of PCP 'preparedness' as a marker for empathy; how consultation modality (i.e. in-person or telephone) shaped perceptions of empathy, and how PCPs sharing next steps in participants' treatment and management could foster realistic optimism. Conclusions While clinical empathy and realistic optimism may be experienced by patients during consultations with practitioners, the wider contextual challenges of accessing and navigating primary care systems can threaten overall perceptions of feeling cared for. Future primary care policy and workforce training must consider these system pressures to preserve effective communication in consultations and positive patient-practitioner encounters.

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.

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

As the volume of online health information expands, critical health literacy is increasingly positioned as a key resource for navigating the contemporary infodemic. This qualitative study examines how multi-lingual adults from diverse migrant backgrounds in Australia access and appraise online health information. Grounded in a participatory action research approach, bilingual community co-researchers (n=11), collectively speaking eight languages other than English, were embedded across all stages of the research. Semi-structured interviews with 55 participants were conducted in participants' preferred languages. Underpinned by a critical realist epistemology and a strengths-based approach, we undertook an iterative, inductive Framework analysis. We constructed two themes (comprising 7 subthemes): (1) Navigating a jungle and (2) It's always a mix of trust and scepticism. Our findings suggest that culturally and linguistically diverse communities are required to navigate demanding information environments characterised by an overwhelming volume of online health content, much of it not tailored to diverse language needs or literacy levels and drawn from sources that are often difficult to verify. Notwithstanding these structural challenges, our strengths-based analysis identified a repertoire of practices through which participants worked to locate understandable information and distinguish credible sources from misinformation. AI tools emerged as a resource in this process, operating as an extension of participant's own cognitive and linguistic work to simplify and synthesise complex information, but positioned ambivalently within credibility practices. These findings have implications for the development of culturally responsive health literacy resources that build on the existing capacities of culturally and linguistically diverse communities.

Background: Patients with high-risk pregnancies due to placenta accreta spectrum (PAS) are at high risk of morbidity and mortality, which may increase risk for childbirth related mental health sequelae including postpartum post-traumatic stress disorder (PTSD) and trauma symptoms. However, there has been limited investigation into these patients' mental health needs. We aimed to use qualitative data to understand PAS patients' mental health experiences through their obstetric course, and to generate recommendations for the delivery of mental health support to these patients. Methods: This exploratory study used a focus group format with patients who had a history of PAS. General questions about patient's pregnancies, births, and postpartum experiences were asked by mental health professionals. Using a rapid qualitative analysis approach, transcriptions of these focus groups were coded by three psychiatrists and core themes were extracted. Results: We conducted four focus groups with a total of 22 women. Major emotional themes included fear and isolation during the antepartum period, and grief, anxiety, and trauma in the postpartum period. Both periods were associated with a negative emotional impact on relationships with family members. Sadness & depression were less prominent among participants' experiences. Participants felt that mental health care resources needed to be integrated with their obstetric care, extend further into the postpartum period, and should be as specific as possible to their medical condition. Conclusions: Based on the results of these focus groups, we propose that patients with high-risk pregnancies and/or a history of traumatic birth should have access to expert mental health care that is integrated with their obstetric care. These patients may benefit from extended obstetric follow-up. Mental health screening in these populations should focus on anxiety and trauma symptoms rather than only screening for depression. Future studies should continue to examine these factors in a broader group of women with high-risk pregnancies beyond PAS.

Objectives To explore caregiver and clinicians perspectives on implementing mental health conversations and supports for caregivers of children with chronic conditions in paediatric outpatient clinics. Specifically, views were sought on (a) screening approaches and measures (phase 1) and (b) how feedback and support could be provided to caregivers experiencing mental health difficulties (phase 2). Methods Caregivers and clinicians from two outpatient clinics (neuromuscular and diabetes) at a tertiary paediatric hospital in Melbourne, Australia participated in online focus groups in July and August 2024. Caregivers were recruited from outpatient clinics and clinicians were recruited via email. Both groups were combined for phase 1 before separating into breakout rooms for phase 2. Two authors conducted reflexive thematic analysis of transcripts using NVivo. Results Sixteen participants (caregivers n = 8; and clinicians n = 8) took part in in two semi-structured focus groups. Analysis generated two overarching domains, each comprising multiple themes. Domain 1, Addressing caregiver mental health, captured themes of overwhelm and invisibility, diverse caregiving roles, and the need for time and resources to support wellbeing conversations. Domain 2, Housing the mental health conversation, encompassed themes of screening preferences, caregiver agency in confidentiality, delivery of feedback, and access to tailored supports. Conclusions Caregivers and clinicians support routine caregiver mental health discussions in paediatric outpatient settings. Caregivers favour screening at diagnosis and key transitions, with clear, and actionable feedback delivered away from the child. Questions about record-keeping warrant further exploration, as do the perspectives of fathers.

Background: Chronic illness is a major public health concern in Europe, the United States, and other high-income countries, limiting individuals capacity for self-management and health promotion. Empowerment interventions improve health outcomes while reducing healthcare utilization. Aim: This study assessed the feasibility of implementing the Bodyknowledging Program, a broadly applicable health promotion intervention developed in Norway, at the community level in the US to evaluate participants experiences, program components, and self-management outcomes among adults living with chronic illness, and to identify the programs strengths and areas for cultural adaptation to inform its cross-national transferability. Methods: A multi-method feasibility design was used, including a group of participants living with various chronic illnesses. Reflexive thematic analysis was applied to analyze focus group data, examining participants experiences, program components, and outcomes. Facilitators field notes and post-intervention survey data were additional data sources. Results: Three themes emerged through the thematic analysis: (1) acceptability of the BKPs health promotion content and approaches among US participants, (2) implementation of the BKP intervention in a US community context, and (3) demand and ideas for continued implementation. Facilitator field notes identified challenges in implementing the hybrid format. Survey data confirmed that participants strongly agreed that the program enhanced their ability to recognize bodily signs and tolerance limits, manage symptoms, prevent deterioration, and promote their health. Participants reached consensus on the value of the programs content, materials, organization, and communication strategies. Conclusion: The Bodyknowledging Program is feasible and well-suited for implementation in the US. This community-based empowerment intervention leverages existing but unutilized human resources to strengthen self-management and health promotion among people with chronic illnesses across diagnostic categories. Further research across diverse settings is recommended to support broader dissemination.

Background: People living with terminal illness face a double financial burden from additional costs and loss of earning for themselves and their carers. Social security benefits are intended to help alleviate some of this financial pressure, and in the UK and other countries people are eligible for fast-tracked access to financial support via the Special Rules for End of Life. One in 3 people who are eligible miss out on this support, yet there is limited evidence on the reasons for this take-up deficit. Objectives: The aim of this study is to understand the barriers and facilitators to claiming benefits for terminally ill people from the perspectives of patients, carers, and health care professionals. Methods: This is a qualitative study combining i) focus groups with healthcare professionals recruited via professional networks and social media, and ii) interviews with patients and carers recruited in hospital and hospice settings. We analysed the data using Practical Thematic Analysis Results: Fifty-five multidisciplinary healthcare professionals participated in 11 focus groups, and we interviewed 10 patients and carers. We constructed five descriptive themes to summarise the data: Navigating priorities and uncertainty; positive impacts alongside a sense of shame and stigma; talking about money, difficulties and dividends; everybodys, yet nobodys, responsibility; and sticking points in the system. Conclusion: The themes reveal several challenges that may contribute to people not taking up this financial support. However, discussions about access to benefits were also seen as a core part of holistic care, a positive way to offer support and a gateway to other discussions about end-of-life care preferences and decisions. Recommendations for policy and practice include evaluating the adoption of a diagnostic rather than a prognostic eligibility criteria, integrating discussions about benefits into existing processes such as advance care planning, and improving education and support for clinicians.

Background: Post-abortion care (PAC) encompasses emergency treatment, counselling, contraceptive services, and referral linkages. Emergency post-abortion care (EPAC), the life-saving component of PAC, addresses acute abortion-related complications, including haemorrhage, sepsis, retained products of conception, and severe pain. In Uganda, where abortion is legally restricted and socially stigmatised, womens care experiences are shaped by clinical urgency, fear, moral vulnerability, provider interactions, and structural health system constraints. Despite EPACs centrality to maternal survival, qualitative evidence on how women interpret and evaluate their care experiences in referral hospital settings in Uganda remains limited. This study explored womens experiences of EPAC at Kawempe National Referral Hospital (KNRH) and identified the factors that shaped those experiences. Methods: A qualitative phenomenological design was employed. Sixteen in-depth interview transcripts from women who received EPAC at KNRH in March-April 2026 were analysed using inductive thematic analysis. The Socio-Ecological Model (SEM) was applied as an interpretive framework. Results: Six themes were identified: (1) survival and physical relief as the immediate measure of good care; (2) pain, fear, and emotional distress during treatment; (3) reassurance and support as buffers against vulnerability; (4) dignity under pressure: communication and privacy in EPAC; (5) structural barriers across the pathway of care; and (6) experiences beyond discharge: incomplete recovery and uncertainty. Care was frequently evaluated through the lens of survival, yet these accounts co-existed with intense procedural pain, compromised privacy, delays, financial burden, and inadequate post-discharge support. EPAC at KNRH was experienced as a complex encounter shaped by bodily vulnerability, interpersonal dynamics, and system-level constraints. Conclusions: Strengthening EPAC requires patient-centred approaches that integrate clinical effectiveness with respectful communication, pain management, improved triage, and structured post-discharge support.

Digital mental health tools (DMHTs) often fail to be successfully implemented in clinical settings. While user- and human-centred design frameworks are frequently proposed for developing effective tools, they are insufficient to address the sociotechnical complexity of healthcare environments. This paper addresses this limitation by detailing the application of a more-than-human design framework to incorporate wider contextual factors into design decisions. To demonstrate the application of this more-than-human design framework, we present a case study showcasing the design of one specific feature within a DMHT intended to support Health Improvement Practitioners (HIPs) in New Zealand's Integrated Primary Mental Health and Addictions (IPMHA) service. Our process blends usage-context storyboards with interface prototypes, using think-aloud interviews to test the contextual fit of our prototypes. The initial design concept failed due to contextual factors such as inconsistent wait times and the administrative burden on clients and clinic staff. This led to a pivot to a more context-appropriate, practitioner-focused, in-session concept for digital psychometric administration and automated scoring. This case study demonstrates that for DMHTs to be viable within complex healthcare environments, design must focus on more than the needs of a single user, incorporating multiple stakeholders and contextual variables across the wider service-delivery context.

Universities provide a key opportunity to deliver social prescribing, a care pathway that aims to connect people with non-medical forms of support within the community to address their social, emotional, and practical needs. However, it is unclear whether students in the UK are aware of social prescribing and whether it would be an acceptable form of support. We surveyed 775 university students across the UK who completed a questionnaire measuring awareness and perceptions of social prescribing. We described awareness and attitudes and used logistic regression to explore how they differed according to individual characteristics. We found an awareness-attitude paradox. Only 25% of students were aware of social prescribing, but attitudes were overwhelmingly positive once explained: 97% thought it could support mental health and wellbeing; 95% believed universities should offer it; and 89% would accept social prescribing if offered by a healthcare professional. Students who were older, postgraduates, and had English as their first language were among those with higher odds of being aware of social prescribing, but positive attitudes were more evenly reported across the sample. Our findings indicate that implementation efforts should prioritise awareness-raising and clear referral pathways, rather than increasing students' willingness to engage with social prescribing.

Background: Chronic intestinal failure is a devastating rare disease in which patients require complex and life-saving parenteral nutrition or intravenous fluids delivered through a central venous catheter. There is a shortage of clinical expertise to manage chronic intestinal failure and patients in the United States lack access to the limited number of expert care centers. We developed a patient intestinal failure (PIF) ECHO intervention with patient advocates who have lived experience with the goal of connecting patients and family caregivers virtually to multidisciplinary intestinal failure experts for best practice learning. Objective: We pilot-tested the acceptability and feasibility of a direct-to-patient telelearning program based on the well-established ECHO Model focused on best practices in chronic intestinal failure care. Setting and Participants: 19 adults with chronic intestinal failure attended the pilot PIF-ECHO program for 12 consecutive weeks via Zoom between April and July 2026. All participants completed the post intervention questionnaire and 16 individuals participated in 3 focus groups. Design: A mixed methods evaluation was conducted. Questionnaires were assessed according to seven domains of the Theoretical Framework of Acceptability and qualitative data from the virtual focus groups were coded and analyzed using iterative thematic analysis. A data-derived PIF-ECHO logic model was developed to illustrate pathways between the program content and anticipated outcomes. Results: There was strong or very strong agreement that sessions were accessible, enjoyable, worth the time spent, and improved understanding of intestinal failure and its management. Information learned increased confidence for self-advocacy in navigating healthcare needs, disease and therapy self-management, and improved well-being. Interaction with facilitators, expert presenters, and peers was positive, judgement free, validating, and respectful. Participants felt empowered and reported lower levels of emotional strain due to the supportive resources and knowledge gained. Conclusions: A patient-facing tele-learning program in chronic intestinal failure is feasible, accessible, and acceptable to patients and appears to result in important short-term and medium-term benefits. The program was perceived as valuable and notably different from patient and peer-led support groups. The model could be applied more widely to other rare diseases. Lived Experience and Patient Contributions: Four patient advocates with lived experience in chronic intestinal failure were involved throughout the study including pre-study interviews and focus groups to inform PIF-ECHO design and content, recruitment, as presenters on topics of self-advocacy and role of patient support groups, and in the analysis and refinement of the program logic model. Their input shaped the relevance and acceptability of the PIF-ECHO pilot program. All four patient advocates fulfil uniform requirements for authorship and are co-authors on this paper. This work documents a meaningful partnership in the creation of a patient-facing virtual tele-learning adaptation of the ECHO model and establishes a valuable collaboration for future study of PIF-ECHO on a larger scale.

Primary ciliary dyskinesia (PCD) is a rare, genetic, multiorgan disease requiring lifelong management. Although PCD affects everyday life, little is known about how people with PCD experience social functioning (SF). We conducted a study within the international participatory Living with PCD study to comprehensively explore SF. First, we conducted a focus group and two semi-structured interviews with adults and parents of people with PCD. We analysed qualitative data thematically and used the findings to develop a multilingual online questionnaire on SF. The questionnaire was completed by 277 participants: 225 adults and adolescents with PCD (81%) and 52 parents of children with PCD (19%). Participants reported active social lives and strong close relationships. PCD had a positive impact on family relationships for 39% of adult/adolescent participants and 41% of parents reporting for children. Among adult/adolescent participants, 49% reported positive or no impact on romantic/intimate relationships, while 17% had avoided or ended a relationship because of PCD. PCD affected the ability to meet responsibilities for 54% of participants, free time for 58%, and planning effort for 53%. Participants were more comfortable discussing PCD with family, friends, and partners than in work or educational settings, where only 29% reported receiving support. Financial support, flexible work, or educational policies and better-trained healthcare professionals were the most frequently identified unmet needs. This study suggests that maintaining SF with PCD requires substantial individual and relational work. Improving SF for people with PCD requires systemic responses in healthcare, education, and employment, alongside support from close networks.

Background: Mobile outreach initiatives have emerged to address persistent barriers to care for people experiencing homelessness, substance use, and mental illness. Although these models show promise, less is known about how and under what conditions they enable engagement and coordinated care. This study explains how, why, and under what circumstances a mobile, cross sector outreach model enables access to care for marginalized populations. Methods: We conducted a realist evaluation of Supportive Outreach Services (S.O.S.), a mobile, cross sector outreach program in Grey County, Ontario. Data included 31 semi structured interviews with outreach providers, partner organizations, system leaders, and clients, supplemented by document review and stakeholder feedback. Using retroductive reasoning and constant comparison, we developed and refined context mechanism outcome configurations to construct an explanatory program theory. Results: Five interconnected realist explanations account for how the model enables access to care. Trust built through repeated, non judgmental encounters supports engagement; proximity reduces barriers to participation; accessible support enables timely help seeking; cross sector relationships enable adaptive coordination; and visible results build legitimacy that sustains participation and resources. Together, these explanations provide a linked explanatory account of how mobile outreach reduces friction between marginalized populations and fragmented services while identifying the structural conditions that constrain its effectiveness. Conclusions: The effectiveness of mobile outreach depends less on the services delivered than on its capacity to reduce friction, sustain relationships, and adapt care across organizational boundaries. The resulting program theory offers transferable explanations for designing coordinated community based services while highlighting the structural conditions required for durable change.

Purpose: The purpose of this study was to examine the barriers and facilitators experienced by non-U.S. born persons during the diagnosis and treatment of latent tuberculosis infection (LTBI) in primary care settings, including the impact of culturally and linguistically congruent care navigation. Design: 25 interviews with non-U.S. born patients, along with focus groups and surveys with 31 primary care team members and leadership, were conducted. Setting: The study was conducted within a network of Federally Qualified Health Center (FQHC) clinics. Participants: Participants were adult non-U.S. born patients with LTBI and FQHC care team members. A purposefully selected subsample of randomized participants was interviewed. Intervention: Care navigators followed participants randomized to receive care navigation after a positive test for tuberculosis (TB) infection and offered health navigation and education about the importance of TB screening and treatment. Method: Data collection was followed by thematic analysis guided by a critical ideological paradigm. Results: Culturally and linguistically congruent navigation emerged as central to potentially reducing barriers, fostering trust, and improving treatment continuity. Participants without navigation support reported confusion and disengagement from care, while those with culturally aligned navigators described clarity and comfort, with influence overall by intrinsic motivation, relational support, and culturally shaped beliefs about care. Conclusion: Care navigation that includes culturally and linguistically congruent navigators whenever possible may help increase LTBI treatment completion among non-U.S. born populations. Limitations of the study include the potential influence of cultural norms, power dynamics, and selection bias.

Scaling HIV pre-exposure prophylaxis (PrEP) services in health systems will require collaboration and clear role distinction among professionals, and between specialist and primary care. This study examined how power dynamics shape efforts to expand PrEP care beyond specialised HIV clinics in Belgium. We conducted semi-structured interviews with 36 HIV clinic providers and two community-based organisation (CBO) representatives, and 16 online group discussions with general practitioners (GPs). We analysed data thematically, guided by the concepts of collaborative and competitive power to examine how providers negotiated expertise and role division in PrEP delivery across professional and organisational boundaries. We found that reimbursement regulations anchored PrEP initiation and follow-up within HIV clinics, embedding specialist jurisdiction in care pathways. HIV specialists reinforced this position by drawing on their recognised expertise in HIV medicine to justify clinical coordination and authority in determining standards of care. GPs emphasised accessibility and preventive care roles but made limited claims to PrEP provision, linked to misaligned organisational incentives, role blurring, limited training opportunities, and the historical concentration of HIV care in specialist services. CBOs facilitated access, enabling coordination between vulnerable communities and clinics while remaining weakly embedded in formal care structures. Findings show that expanding integrated PrEP services beyond specialised care is not only shaped by operational issues such as training and resources but also by the structural dynamics of regulations, institutional mandates, and professional jurisdictions that influence collaboration. Effective scale-up will require policies that align incentives, clarify responsibilities, and support collaboration across specialised, primary care, and community settings.