Health Expectations最新文献

Introduction: There is a lack of evidence to support UK and international clinical recommendations to delay cervical screening to 12-weeks postnatal. In previous studies, half of women were out of date for screening by the end of pregnancy and the majority would be more likely to take up cervical screening, if offered at the 6-week postnatal check-up. We explored views about postnatal cervical screening the acceptability of offering cervical screening, using conventional and urine self-sampling, earlier within the postnatal period.

Methods: A cross-sectional qualitative design was used with recruitment from a larger questionnaire-based study. Twenty-six online semi-structured interviews were conducted with 26 pregnant or recently pregnant participants. Interviews were transcribed and pseudonymised. A topic guide was developed, and data analysed using inductive reflexive thematic analysis.

Results: Three themes were generated from qualitative analysis of verbatim interview transcripts: 1) A window of opportunity; 2) Am I ready yet? Postpartum recovery; and 3) Neglect of women's health in and around pregnancy. Overall, there was a perception that women's health was not a priority in the postnatal period compared with their babies.

Conclusion: This is the first study to use qualitative interview methods to explore women's views about the offer of cervical screening alongside the postnatal check-up. Results support the feasibility of a clinical trial to test the accuracy and effect on uptake of offering cervical screening at the postnatal check-up, although recognised it might be too soon for some. This should be considered in future feasibility research that includes assessment of concurrent acceptability.

Patient or public contribution: This study was performed following focus groups in a quality improvement project, designed to increase uptake of cervical screening in women and people who were pregnant or recently pregnant. The suggestion for combining cervical screening with the routine 6-week postnatal follow up was an idea generated by new parents and GP practice staff. The Somerset Maternity Voices group provided feedback on study materials, including the consent form and posters. The semi-structured interview topic guide was designed following free-text comments in the pre-PINCS web-based survey, results of which are published separately. Female pregnant and recently pregnant people, regardless of current gender identity, were included in this study. In line with the Royal College of Obstetricians and Gynaecologists language guide, we will use 'women' to describe participants.

Clinical trial registration: Trial was registered with the National Institute for Health and Care Research Central Portfolio Management System (CPMS ID: 55489) and https://bepartofresearch.nihr.ac.uk/.

Context: The majority of people living with diabetes experience stigma; this is often conveyed through language. There is a growing international focus on the language used around diabetes, but the experience of the same has not been investigated in an Irish context.

Objectives: To investigate: (1) the experience of language related to diabetes among people living with type 1 or type 2 diabetes in Ireland and (2) perceptions of the Irish Language Matters guide.

Methods: Using a descriptive qualitative approach, semi-structured interviews were conducted with 14 participants aged 21-68, diagnosed with type 1 (n = 10; 8 female) or type 2 diabetes (n = 4; 2 female). Reflexive thematic analysis was used.

Results: Four themes were developed: (1) 'Language used by healthcare providers matters'; sub-themes: 'Dismissive, blameful, and inadequate language' and 'Person versus Patient'; (2) 'Judgement'; sub-themes: 'Misunderstanding and misconceptions about diabetes' and 'Minimising and othering language'; (3) 'More than language'; and (4) 'The Irish Language Matters guide: Mixed feelings'. Language described was predominantly negative, emotionally meaningful, and important in healthcare. It often conveyed stigma, criticism and judgement rather than care and support. Communication as a whole, including tone and attitude, was important. The guide was largely endorsed, but disagreement existed around some terms.

Conclusions: In Ireland, language around diabetes is typically negative and conveys stigma. This study underscores the need for Ireland-specific guidance and training on respectful language and effective communication, particularly in healthcare settings.

Patient or public contribution: The initial interview guide developed by the primary researcher was circulated to the Diabetes Language Matters Ireland Working Group, which includes people living with diabetes, psychologists, dieticians and a consultant endocrinologist, all Ireland-based. Their feedback was incorporated across two rounds to produce the penultimate guide. This guide was then piloted by the primary researcher with a person living with type 1 diabetes; pacing adjustments were made to produce the final interview guide.

Background: There is a great deal of variation in the design and delivery of the peer health navigator role, making it difficult to adapt role responsibilities into context. In this study, we aimed to co-design a bicultural peer health navigator (BPHN) role to meet the needs of culturally and linguistically diverse (CALD) people from Pacific Islander, Māori and Arabic-speaking backgrounds.

Methods: A two-phase co-design approach involving workshops with follow-up member checking via interview was used to gain insight into factors affecting patient interaction and access barriers to health services.

Results: Barriers described by participants emerged under five major themes-overcoming language barriers, improving communication, navigation and access to information, appointment reminders, and health and social services education in the community.

Conclusion: Clear tasks for the BPHN role were identified by the participants to improve accessibility and usage of healthcare services. Future work should involve feasibility testing with the support and involvement of community members, BPHNs and their supervisors and importantly health service leaders.

Patient or public contribution: Four of the authors were employed as bicultural peer health navigators (BPHNs) who engaged their communities to organise and conduct these workshops in their preferred language. This approach enabled an inclusive environment for the participants to share their thoughts and experiences. The proposed roles for a BPHN were generated from the workshop discussions. The BPHNs conducted the semi-structured verification interviews with the workshop participants. The thematic analysis was conducted by two of the BPHNs, with one being the primary author.

Background: Older adults with serious illness often face treatment decisions shaped by personal values, yet recognising and expressing those values in ways that guide decision-making can be challenging. This study evaluated the acceptability, usability and effectiveness of MyCare, a digital values clarification tool designed to help older adults identify and communicate their care preferences to substitute decision-makers, healthcare providers and support persons.

Methods: This convergent mixed-methods study explored older adults' experiences with MyCare. Acceptability was assessed using the Theoretical Framework of Acceptability survey and qualitative interviews examining perceptions of the tool's relevance and ease of use. Usability was measured with the System Usability Scale and participant feedback on navigation and clarity. Potential effectiveness was evaluated based on self-reported ability to articulate and discuss care preferences. Semi-structured interviews explored these outcomes in depth and were analysed using thematic analysis.

Results: A total of 15 participants (mean age = 83.5 years, SD = 7.6) were surveyed and interviewed between November 2024 and January 2025, including five dyads (one son and mother, three husband-wife pairs, and two sisters). Key themes identified included: (1) navigating autonomy and delegation in end-of-life decision-making, (2) fragmented communication, (3) influence of lived and observed experiences on care decisions, (4) fears around acceptable and unacceptable quality of life, and (5) using MyCare to promote proactive care planning. Participants reported moderate electronic health literacy, and survey results indicated high usability (SUS mean 83.2/100) and strong acceptability of MyCare, particularly in comfort, perceived value and ease of use.

Conclusions: MyCare demonstrated high acceptability and usability, with participants finding it effective in clarifying and communicating care preferences. It facilitated discussions about quality of life and decision-making, though challenges remain in addressing prognostic uncertainty and aligning preferences with realistic care goals. Future research should refine the tool to enhance its integration into routine healthcare settings.

Patient or public contribution: A patient partner was involved from the outset of this study as a co-author and co-decision-maker in the design and development of MyCare. Their lived experience as the spouse of someone with a serious illness informed the structure and priorities of the tool to ensure its relevance to patient needs. Following this, we engaged additional patients as research participants to provide feedback on usability and functionality. Their insights are being used to refine and adapt MyCare to maximise its impact for future patients.

Introduction: Weight stigma and bias in healthcare are well-documented and can deter individuals from participating in research. These sensitivities often foster distrust, creating barriers to recruitment and engagement. Patient and Public Involvement and Engagement (PPIE) strategies are essential to building trust, enhancing transparency and fostering collaboration with under-represented populations.

Methods: This article presents both stages of the PPIE strategy for the Larger Bodies in Radiography (LBinRAD), a multiphased research project which aims to explore experiences and develop services which support person-centred, compassionate care for individuals with larger bodies across medical imaging and radiotherapy services. Stage 1 involved four individuals with lived experience who contributed to developing a UK-wide survey, disseminated via social media to recruit participants living in larger bodies who had accessed radiographic services. Stage 2 created a pool of 28 PPIE representatives, inviting them to participate in five online focus groups designed to: (i) explore participants' perspectives on key priorities, including widening participation; (ii) co-create belief statements to guide future PPIE activities; and (iii) collaboratively shape subsequent research phases.

Results: In Stage One, PPIE consultation shaped language and messaging, leading to the adoption of the term 'larger body' and clarification that body weight data would not be collected. A distinct sub-population identifying as taller than average was also recognised. PPIE representatives recommended targeted outreach to relevant social media groups, significantly improving recruitment reach and inclusivity. In Stage Two, 22 PPIE representatives participated across five focus groups. Listening to their experiences provided valuable insights that helped ensure lived experience remained central to the methodology. These insights informed several key refinements, including broadening inclusion criteria and recruitment locations, exploring language in greater depth, discussing cultural influences, and using varied media and methods to capture data and support co-design.

Conclusion: PPIE was central to the success of Phase 1, shaping the research process and outcomes. Insights and action points from this collaborative approach will guide Phase 2 and future research development. By centring historically marginalised voices, PPIE enhances research inclusivity, relevance, credibility and impact.

Patient or public contribution: The research was undertaken in partnership with PPIE representatives, and this publication has been co-authored with a representative, who will be a co-applicant for future research funding.

Introduction: Low health literacy among older adults living in the community contributes to poor health outcomes. While communication training exists for specific conditions (e.g., hypertension), there is limited evidence on programs that enhance health literacy competencies among primary healthcare providers working with older adults. This study aims to co-design a health literacy-focused communication training program for general practitioners, practice nurses and allied health professionals in primary care.

Methods: This study drew on an Experience-Based Co-Design approach; three online workshops were conducted over 2 months with a participant group of adults aged 50+ years and primary healthcare professionals, facilitated by a multi-disciplinary research team. Activities involved a needs assessment informed by a prior scoping review, structured ideation and post-workshop surveys to prioritise communication competencies, training outcomes and delivery preferences. Competencies were synthesised into draft program modules, and participants reflected on the co-design experience.

Results: Seven participants identified and prioritised nine core communication competencies spanning knowledge, skills and attitudes. The competencies were grouped into three-modules, deliverable by a mix of online self-paced subjects and in-person simulations. Evaluation surveys and qualitative feedback showed positive participant engagement in the sessions. The co-design process was refined iteratively to improve clarity and structure.

Conclusion: This structured yet flexible co-design process resulted in a final training program that integrates real-world needs with pedagogical frameworks and aligns with evidence from prior training interventions. There is potential for implementation in primary healthcare provider training environments.

Patient or public contribution: Older adult consumers contributed lived experience to the co-design workshops, interpreting findings and shaping the training prototype. This manuscript was reviewed by a consumer.

Background: The inclusion of Service User Involvement (SUI) in higher education, particularly within Allied Health Professions (AHP) programs, has been increasingly mandated by professional standards globally. This scoping review aimed to systematically map existing literature on active SUI in undergraduate AHP education to identify types of involvement activities, how involvement is measured and to identify gaps in the current evidence base.

Methods: Using PRISMA-ScR, a comprehensive search was conducted across five major databases; OVID Medline, OVID Embase, CINAHL, Scopus, and PsycINFO alongside grey literature. Analysis of results was framed using Towle's taxonomy and the Kirkpatrick evaluation model.

Results: Twenty-five studies met the inclusion criteria. Most involvement was with occupational therapy students (n = 13) followed by physiotherapy students (n = 7). Most studies documented SUI primarily in teaching delivery (n = 20), with less involvement in curriculum design (n = 2). The review highlighted limited engagement at higher levels of Towle's taxonomy, where they act as equal partners in educational processes. Regarding the Kirkpatrick model, most measured impact by immediate reactions (Level 1) or learning outcomes (Level 2), and few explored changes in student behaviour (Level 3). None of the included studies measured long-term clinical outcomes (Level 4). Variability in terminology and practices was reported.

Conclusion: This scoping review highlights the increasing value of (SUI) in undergraduate AHP education. Addressing barriers and standardising implementation are key to advancing meaningful engagement. Future research should explore the long-term impact of SUI on clinical practice and patient outcomes.

Patient and public involvement: A special interest group of service-users were regularly consulted. They provided feedback on the search terms and all draft versions of the review.

Background: People living with neurological conditions have needs that require an integrated care approach. Existing models of integrated care have often emphasized system structures but neglected the micro-level interactions that matter most to people.

Objectives: To develop a micro-level model for integrated care that represents the care components most valued by people affected by Huntington's disease (HD).

Methods: A mixed methods study with a co-designed approach was delivered through three phases. This paper reports on the latest two, where interviews and workshops were conducted with people with lived experience of HD and professionals, from January to October 2024. Patient and public contributors were involved from project design to data interpretation.

Results: Three themes were identified that position integrated care from the perspective of those affected by HD, representing these as the EC4Neuro model. Theme 1 identified the core components of micro-level integrated care: expert knowledge, person- and family-centred care, care coordination and continuity of care. Theme 2 underlined access inequities. Theme 3 highlighted people's responsibility to manage care without true agency to do so. The workshops prioritized strategies that enhance relational continuity between service users and providers. A tiered strategy was undertaken to support decision-making towards improving person-centred outcomes.

Conclusions: EC4Neuro is the first integrated care model developed in HD. Its co-designed approach with end users successfully embedded people's perspective to guide what needs to be achieved at the micro-level. The EC4Neuro model offers prospective replication opportunities, particularly for stakeholders concerned with reducing access inequities and supporting relational continuity.

Patient or public contribution: A group of 25 experts by lived experience of HD and other neurological disorders, co-designed this research project, working with the researchers from conception of the studies to analysis and interpretation of the data.

Background: Crisis and Liaison teams in Child and Adolescent Mental Health Services (CAMHS) offer intensive, short-term support to young people experiencing mental health crisis in the community (Crisis) or admitted to acute hospitals (Liaison). There is no evidence-based model for how these teams operate. The SAFER care bundle, designed to improve discharges from acute hospitals, has been adapted for use in mental health inpatient discharges for adults (SAFER-MH) and young people (SAFER-YMH). This study took a care bundle designed to improve discharges from CAMHS inpatient care (SAFER-YMH) and used stakeholder feedback to adapt it for use in CAMHS Crisis and Liaison teams.

Design: Focus groups were carried out with healthcare professionals (HCPs), young people and parents/carers to present the SAFER care bundle and discuss necessary adaptations for use in CAMHS Crisis and Liaison teams. Analysis of transcripts followed a Normalisation Process Theory (NPT) framework to identify barriers and facilitators to implementation and necessary adaptations.

Results: Participants expressed that integrating the SAFER-YCL care bundle into the electronic patient record, automatically pulling information from other forms, and providing a template for discharge letters and safety plans could serve as an aide-memoire and potentially replace current discharge documents. It would need to avoid increasing documentation burden for staff and have flexibility to be administered by different staff members and at an appropriate time.

Conclusions: The SAFER-YCL care bundle has been successfully developed for implementation in CAMHS Crisis and Liaison services, demonstrating potential to enhance transition experiences. Feasibility testing will be crucial to validate its effectiveness and facilitate successful integration into clinical practice.

Patient or public contribution: This study was initially presented at the Nottinghamshire Healthcare NHS Foundation Trust's Involvement group of young people to gather their thoughts on it. They were supportive of the study design and gave constructive feedback on the study. A PPI representative with lived experience was part of the study team who was involved in developing and reviewing all study materials, was part of monthly reviews of the study's progress and supported data collection, analysis and write-up of the study results.