Health Expectations最新文献

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: 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.

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: A limited number of physical activity programmes exist for Chinese people with young-onset (18-40 years) type 2 diabetes amid its rising global prevalence. This study aims to develop a multimodal intervention for improving physical activity levels for individuals with young-onset type 2 diabetes using co-design.

Methods: The development process included three stages. Stage 1 involved synthesising the findings of a review of existing physical activity interventions and a qualitative study of exercise experiences of young adults with type 2 diabetes. This generated a list of candidate intervention elements and behaviour change techniques to inform the co-design process. Stage 2 involved the development of animated trigger films, using findings from stage 1, to present the physical activity experiences of people with young-onset type 2 diabetes. In stage 3, a series of co-design workshops engaging relevant stakeholders were conducted, utilising the outputs from the previous two stages and aligning with the Design Thinking theory.

Results: Twenty-five participants (12 young adults with type 2 diabetes, 12 healthcare professionals, and one family member) attended co-design workshops to develop the intervention. The co-design process resulted in a logic model for a tailored programme-IPAYD (Improving Physical Activity in people with Young-onset type 2 Diabetes). This programme integrates behaviour change techniques across four elements: individualised goal setting and planning, exercise monitoring, a peer support forum, and educational resources. An eHealth platform was preferred to deliver the programme, incorporating one-to-one consultations and optional group sessions to enhance social support and social interaction.

Conclusions: Through stakeholder engagement in a co-design process, this study makes a novel and much-needed contribution to developing a physical activity intervention for Chinese people with young-onset type 2 diabetes.

Patient and public contribution: An advisory group of six Chinese young people with type 2 diabetes met online and communicated through a project-focused WeChat group. They contributed to the animated film scripts, the topic guide of the workshops, the design of the intervention materials, and how to conduct the workshops to align with Chinese culture.

Introduction: Patients and caregivers living with diabetes experience multiple barriers to diabetes management. These include financial, geographic, and lack of culturally relevant diabetes education. Our aim was to understand the perspectives of patients living with diabetes on what should be prioritised in Alberta regarding diabetes care, management, and treatment. In this paper, we described our community engagement process and summarised the main priorities identified by Albertans regarding diabetes care, management, and treatment.

Methods: Our team consisted of academic researchers, research & engagement staff, and two experienced patient partners, one with lived experience of Type 1 diabetes, and one family caregiver of Type 2 diabetes patients. We conducted a patient-oriented qualitative study through focus groups with patients living with diabetes and caregivers across Alberta. Notes and reflections from the focus groups were qualitatively analyzed using content analysis in an inductive manner.

Results: A total of 60 Albertans living with Type 1 (55%), Type 2 (42%), pre-diabetes (2%), and latent autoimmune diabetes of adults (LADA) (3%) were engaged in focus group and interview sessions. The results of the 11 focus groups and two interviews with 60 Albertans were summarised into three main themes, and eight priorities (subthemes) identified within these themes: (1) Access to resources (medications and technology, social and mental health supports, physicians and specialists, and physical activity). (2) Compassionate care. (3) Education & research (awareness about diabetes & diabetes research, and improved patient and community informed research capacity).

Conclusion: This work was undertaken to support the efforts of the Provincial Diabetes Working Group. Community consultations such as this are critical in informing health policy, as they ensure that decision-making is grounded in the lived experiences, needs, and priorities of patients and caregivers. Through the highlighted barriers to care, gaps in education, and culturally specific needs, these consultations provide actionable evidence to guide policy development, programme planning, and resource allocation.

Patient or public contribution: Patient partners were involved in this study. Our two patient partners supported the recruitment of participants, facilitated focus groups and semi-structured interviews, and supported the interpretation of the results. This included the review of the main priorities identified. They also contributed to this manuscript as co-authors.

Background: Addressing power issues in research involvement is needed for advancing equitable relationships between patients and researchers. While previous studies acknowledge power challenges in patient involvement, few approach power as a dynamic phenomenon in which multiple and shifting power relations coexist.

Objective: To examine how researchers navigate three power relations identified in patient involvement research - power with, power to, and power over - and associated tensions.

Methods: Sixteen purposively sampled life science, social science and clinical researchers from two Finnish universities participated in thematic interviews. Interview transcripts were analysed thematically.

Results: Researchers navigated power relations through three tensions in patient involvement: (1) tokenism versus co-creation, (2) institutional structures versus everyday complexities, and (3) conflict versus reflexivity. In tokenism versus co-creation, gatekeeping (power over) and openness to patient ideas (power to) co-existed, but also evolved towards co-researchership (power with). In institutional versus everyday complexities, mediated representation replaced direct involvement, reinforcing hierarchies; funders' recommendations encouraged collaboration but could also consolidate power over through procedural control. In conflict versus reflexivity, power over was evident in patients' rejection of assigned roles and interactional and relational challenges within involvement practices that reproduced hierarchical dynamics.

Conclusions: The study contributes to the discussion of power challenges in patient involvement by illustrating how researchers simultaneously enact, reproduce and resist multiple power relations. A dynamic view of power clarifies researchers' roles in shaping patients' involvement in research.

Patient or public contribution: The first author is a trained Expert by Experience patient-researcher with extensive involvement in researcher-patient collaboration across health care and health research contexts. She has participated in all study phases and had a major role in data collection and analysis.

Background: Parents in the United Kingdom seeking an assessment for attention-deficit/hyperactivity disorder (ADHD) for their child experience a significant wait before receiving an appointment with Child and Adolescent Mental Health Services (CAMHS), yet little has been written on how parents experience this period. Through qualitative interviews, we sought to understand how the period of waiting from being accepted onto a service waitlist and receiving a diagnostic assessment impacts parents and their children.

Method: The study was nested within a large randomised controlled trial. We conducted semi-structured interviews with 41 parents of children aged 5-11 years. 30% of parents had waited between 18 and 24 months on a CAMHS waitlist, with 10% waiting more than 2 years. Reflexive thematic analysis was used to analyse data.

Results: At the point of the interview, around 50% of children were still waiting for an initial assessment. Six themes reflecting parents' uncertainty around the assessment process, lack of communication from services, the importance of receiving a diagnosis, difficulty accessing support and the negative impact of waiting on mental health and education, as well as recommendations to improve communication between services and families, emerged.

Conclusion: Parents recognised the pressures on services to offer timely support; however, their well-being could be substantially improved by more clarity around wait times, as well as more effective signposting and support from services concerning the assessment process. This may help alleviate some of the stressors associated with their child's assessment journey, such as feeling responsible for their child's difficulties and the burden of supporting their educational needs.

Patient and public contribution: This study was nested within the OPTIMA trial, where PPI panel members provided ongoing support in various aspects of the study, including advising on participant communication, study design and data analysis. All PPI members have lived experience of having a neurodivergent child. For this study, the PPI co-produced the interview schedule and took part in transcript analysis using a thematic framework approach. To acknowledge their contributions, members of the PPI panel are included as co-authors.

Background: Post-traumatic stress disorder (PTSD) affects approximately 1 in 20 individuals, with primary care playing a crucial role in early identification and management. However, PTSD is frequently underdiagnosed in primary care settings. The COVID-19 pandemic has exacerbated the incidence of PTSD, leading to an increased demand for accessible mental health services. While NICE guidelines recommend trauma-focused therapies, access remains limited, underscoring the need for alternative strategies to support management within primary care.

Aim: To optimise and refine through co-production the PTSD Hub app, an existing digital resource, to better support individuals with PTSD in primary care settings, improving usability, clinician engagement, and patient outcomes.

Design & setting: A co-production approach was employed with stakeholders, including people with lived experience of PTSD, informal carers, and primary care professionals. Workshops were held online to gather insights on how to enhance the PTSD Hub app for better integration into primary care.

Method: Two Nominal Group Technique workshops were conducted to identify key barriers to PTSD care in primary care and generate solutions for improving the app. Participants ranked and prioritised features based on relevance to primary care.

Results: Twenty-six participants attended the workshops, representing a diverse mix of stakeholders. Key barriers identified included stigma, clinician time constraints, and limited access to trauma-focused therapies. Solutions included improving symptom tracking, enhancing customisation features, and raising clinician awareness.

Conclusion: The study highlights the potential of the PTSD Hub app in improving and supporting PTSD management in primary care. Future research should evaluate the app's effectiveness in real-world primary care settings.

Patient and public contribution: Patients and members of the public were actively involved throughout this study using a co-production approach. A lived experience advisory panel of six individuals with PTSD provided input at all stages, including shaping the study design, reviewing participant materials, and advising on workshop facilitation. Additionally, 26 participants, comprising individuals with lived experience of PTSD, informal carers, and healthcare professionals, contributed to two Nominal Group Technique workshops. A lived experience research partner (NC) was an integral part of the research team, attended all team meetings, co-facilitated workshop sessions and contributed to design, analysis and manuscript preparation.