BACKGROUND:Patient and public involvement and engagement (PPIE) can increase the relevance and efficiency of research projects. An overview of PPIE approaches and implementation in pediatric research studies is needed to facilitate learning from others' experiences. OBJECTIVE:We aimed to systematically review practices in PPIE across all pediatric health research disciplines regarding characteristics and recruitment of PPIE participants, timepoints and methods used for PPIE, levels of involvement, benefits and barriers of PPIE. SEARCH STRATEGY:We searched Pubmed, EMBASE, Cochrane and PsycInfo using a comprehensive set of terms based on the concepts 'Patient and Public Involvement,' 'Health Research' and 'Pediatrics.' INCLUSION CRITERIA:We included original research articles describing PPIE implementation in pediatric health research published in English or German between 01/2003-10/2024. DATA EXTRACTION AND SYNTHESIS:Data was extracted using predefined categories and synthesized by narrative summary and thematic synthesis. PPIE reporting quality was assessed using the GRIPP2 short form checklist. MAIN RESULTS:Out of 1910 references, we included 37 original research articles, representing 35 studies. PPIE participants were mostly children, adolescents or caregivers involved in all research stages, especially in study design (89%) and recruitment (51%). Key positive impacts of PPIE on research included enhanced recruitment and retention rates and personal benefits for PPIE participants. Barriers to PPIE were financial and time resources required and challenges in recruiting representative PPIE participants. The level of involvement and PPIE reporting quality varied highly between studies. DISCUSSION:Common benefits and barriers of PPIE exist across pediatric research disciplines. Reporting quality varied highly between studies. CONCLUSIONS:PPIE is valuable in pediatric health research. Adherence to guidelines for conducting and reporting PPIE is important to enhance mutual learning. PATIENT OR PUBLIC CONTRIBUTION:PPIE input contributed to the understandability of the lay summary. The findings of this review, together with parent and public input, will inform guidelines for future PPIE activities at the authors' institutions.
BACKGROUND:Equitable participation in clinical trials is essential for ensuring that research evidence is scientifically robust, ethically just and representative of the populations it is intended to serve. In Australia, culturally and linguistically diverse (CALD) populations remain underrepresented in clinical trials despite increasing national policy attention to equity and inclusion. This review synthesized empirical evidence and Australian policy and practice documents to examine factors influencing CALD participation in clinical trials. OBJECTIVES:To synthesize evidence on CALD attitudes, perceptions and factors influencing clinical trial participation in Australia; examine reported barriers and facilitators; describe how CALD populations have been conceptualized across the literature; and identify implications for research, practice and policy. METHODS:A scoping review was conducted in accordance with Joanna Briggs Institute guidance and reported using PRISMA‑ScR. Five electronic databases were searched for English‑language primary studies published between 2006 and June 2025. Eligible studies examined CALD adults' perceptions, experiences or participation in Australian clinical trials. A targeted synthesis of Australian grey literature was undertaken to contextualize empirical findings within the national policy and practice landscape. Data were charted and synthesized narratively. RESULTS:Eight empirical studies and seven Australian policy and practice documents were included. Five themes emerged from the empirical literature: (1) willingness to participate exists but opportunity is structurally constrained; (2) language and health literacy are pervasive barriers; (3) cultural values, family involvement and trust shape participation decision-making; (4) system-level practices limit equity monitoring and inclusion; and (5) inconsistent implementation of feasible facilitators. Policy documents increasingly recognized these same structural determinants and proposed system-level strategies to improve equitable participation; however, nationally consistent implementation and accountability mechanisms remain limited. CONCLUSION:Clinical trial participation among CALD populations should be understood as a dynamic, multi-level decision-making process rather than a single recruitment or informed consent event. Although Australia's policy landscape increasingly recognizes the structural determinants of equitable participation, implementation remains fragmented. Future efforts should prioritize culturally responsive, evidence-informed and measurable approaches that support equitable participation throughout the clinical trial pathway. PATIENT OR PUBLIC CONTRIBUTION:This scoping review synthesized published literature and did not involve the direct collection of data from patients or members of the public. The analysis, interpretation and framing of the findings were directly informed by patient and community perspectives reported in the included studies, many of which involved CALD consumers, carers and community members. The review was designed to amplify these perspectives and identify system‑level changes to improve equity in clinical trial participation.
INTRODUCTION AND OBJECTIVES:Living with attention-deficit/hyperactivity disorder (ADHD) may negatively affect young women's sexual and reproductive health (SRH) if they lack adequate support. To promote positive and safe sexual and relational experiences, this study aimed to identify important components within health care settings that can promote SRH among young women with ADHD. METHODS:An expert panel of young women (aged 19-29 years) with ADHD and health care professionals (HCPs) working in SRH counselling or psychiatric clinics rated the importance of statements on the topic across two survey rounds. RESULTS:Consensus was reached on about two-thirds of the statements. High agreement emphasized the need for HCP training on ADHD and SRH in both psychiatric clinics and SRH clinics, including knowledge of hormonal influences. Important components also included routine inquiries about sexuality and relationships, and sexual violence; accessible health care; inclusive SRH information that acknowledges variation of symptoms and functional abilities; discussion groups on sexuality and relationships for young women; and integrating SRH in existing psychoeducation. CONCLUSION:SRH among young women with ADHD may benefit from several health care efforts delivered across both sexual health and psychiatric services, including accessible care tailored to their needs, structured clinical routines and appropriate training in SRH and ADHD for HCPs. PATIENT AND PUBLIC CONTRIBUTION:Young women with experience of living with ADHD and HCPs with varied clinical expertise participated in the Delphi study. Women with ADHD were involved as co-researchers in the survey development and in the pilot-testing.
BACKGROUND:A fundamental barrier to effective recovery outcomes for psychosis, is the lack of involvement of service users (SUs) in decisions made about their care. Despite policy recommendations, implementation of shared decision-making (SDM) is inconsistent, under-reported in mental health practice and thus requires further attention. This research aimed to explore SU and clinician experiences of SDM in community mental health care. DESIGN:Qualitative data from a cross-sectional mixed-method study is presented. A purposive sample of 18 participants (10 SUs experiencing psychosis, 8 psychiatrists) from one NHS community mental health service, took part in semi-structured interviews which underwent reflexive thematic analysis. RESULTS:Participants acknowledged SDM as integral to consultations, with overlaps and disparities in SU and clinician perceptions of the reality in practice. Three themes are reported: (1) knowledge and capacity for SDM, (2) relational dynamics; power and communication in SDM and (3) evaluating the realities of SDM in practice. SUs reported they needed to be in the right frame of mind while clinicians acknowledged they were struggling and it wasn't easy to take medication. SUs also wanted to be more engaged in decisions about their care, involving others in the process, with further clarification about options, and alluded to power asymmetry. Clinicians and SUs stressed that structural pressures (concerning time and resources) limited explanation of treatment options and clinicians reflected on stigma they faced. They questioned if SUs experienced the service they thought they were providing. DISCUSSION:SU and clinician perceptions often overlapped but at times misaligned, suggesting inconsistency in practicing SDM. Implications for practitioners and policy makers include revisiting how SDM is used in practice, with adequate structural and resource provision, potentially involving others to bridge the gap between experiential and medical knowledge. Limitations are reflected on, however, this research emphasises the importance of consistent use of SDM in community mental health. PATIENT OR PUBLIC CONTRIBUTION:Service users, academics, and clinicians from the Centre for Public Engagement, Kingston University participated in the research design, development of study materials and data analyses. The study would not be possible without this involvement.
BACKGROUND:Cancer-related financial hardships are common and negatively impact cancer-related outcomes. Supporting patient-clinician cost discussions, financial navigation, and insurance literacy may help mitigate this distress. This qualitative study informed the adaptation of the "Improving Cancer Patients' Insurance Choices" (I Can PIC) tool into the "Cancer Affordability REsources" (CARE) Tool by updating content, design, and implementation processes. METHODS:Patients ≥ 18 years, diagnosed with lung, prostate, colorectal, or gynaecological cancer within 3 years, English-speaking, and treated at specified urban or rural cancer centres were included. Healthcare personnel (HP) were employed at one of these cancer centres and worked with the specified cancer types. The Consolidated Framework for Implementation Research (CFIR) and the 5As of Access in Healthcare Framework guided the development of semi-structured interview guides and codebook. Interviews were conducted virtually, transcribed professionally, coded, and analysed using rapid thematic analysis. RESULTS:Twenty-two patients with cancer and 14 HP from urban and rural cancer centres participated (N = 36). We identified four themes. First, there was a mismatch of expectations around cost conversations. HP expressed concerns about potentially introducing financial-related distress and did not know specific cost information, while patients emphasised the need for cost discussions with HP. One shared, "I'm kind of… removed from the financial aspect, which is good 'cause then I can just focus on taking care of patients." In contrast, one patient said, "…It's not acceptable to just have your hands up and say I don't know… a patient needs to know." Second, preferences for timing of cost conversations varied, with a need for both immediate and subsequent conversations per patient readiness. One patient shared, "I would have loved to speak with someone about the cost, but I was more concerned about my survival…". Third, there were multiple usability considerations, including technological demands, health literacy, and the perceived relevance of the tool. Fourth, context-specific delivery is critical to ensure access. DISCUSSION:This user-centred content, usability, and implementation focused adaptation of the CARE Tool incorporated perspectives from patients, HP, and end-users. Next steps will evaluate the CARE Tool in a clinical trial, assessing financial hardships, self-efficacy, health insurance literacy, and implementation. PATIENT AND PUBLIC CONTRIBUTION:This research teams includes a patient advocate and our research question, design, data collection, and interpretation of results was presented for feedback to our community advisory board, made up of patient and public research partners. We recruited patients and healthcare personnel to participate in this study. We greatly appreciate the time, perspective, and experience that our patient and community research partners and participants have contributed to this study.
BACKGROUND:The Statutory Duty of Candour (SDC) legally requires healthcare organisations to notify patients, families, and carers who experience a serious adverse patient safety event (SAPSE), provide an apology, and explain steps taken to prevent recurrence. However, despite growing international adoption of SDC, evidence on its implementation and impact on patients and families ('consumers') remains limited. This study examined consumer awareness, understanding, and lived experiences of SDC in Victoria, Australia, two years after its introduction. METHODS:A mixed-methods study integrated data from an online survey and semi-structured interviews with healthcare consumers in Victoria, Australia. Descriptive analysis was undertaken for quantitative items, while reflexive thematic analysis was applied to qualitative data from survey free-text responses and interview transcripts. RESULTS:In total, 80 consumers participated: 72 completed the survey and 13 completed interviews, with five participating in both. Although nearly two-thirds (61%) had no prior knowledge of SDC, over three-quarters (78%) perceived it as useful. Among those who had experienced an adverse event, half reported that staff were not open following the incident, over half reported that no post-incident meeting occurred, and satisfaction with meetings was low (26%). Six themes were identified: (1) Candour as Moral Reassurance; (2) Persistent Scepticism and Conditional Trust; (3) Limited Awareness and Accessibility of SDC; (4) Genuine Apology for Trust Repair; (5) Emotional Labour, Power, and the Risk of Re-traumatisation; and (6) Demonstrating Accountability with Organisational Learning and Improvement. An overarching theme, Candour as a Relational Process for Trust, described how trust was tested, repaired, or further eroded through SDC processes following an adverse event. CONCLUSION:SDC holds significant potential to repair trust following adverse events, but its impact depends on how it is enacted. When delivered with empathy and meaningful follow-up, SDC supports repair of trust. However, when experienced as procedural or defensive, SDC may compound distress and further erode trust. Therefore, SDC must be embedded not just as a regulatory requirement, but as a relational and person-centred practice for patients and families. PATIENT OR PUBLIC CONTRIBUTION:Healthcare consumer representatives were part of the research team, assisting with the study design, data analysis, and article writing.
BACKGROUND:The NEED (Needs Examination, Evaluation and Dissemination) framework provides a structured, multidimensional approach to assess unmet health-related needs at both patient and societal levels, using predefined criteria, indicators and standardised data collection tools (e.g., questionnaire and interview guide). This paper outlines the methodological adaptations and considerations required when applying the NEED framework to psychotic disorders (PD). PD encompass a spectrum of conditions, including schizophrenia and schizoaffective disorder, and are characterised by overlapping symptom clusters and inconsistencies in communication of diagnoses in patient contact, which complicates research design and the delineation of study populations. METHODS:In preparation for a NEED study in PD, a literature review and expert consultations informed the inclusion and exclusion criteria, choice of diagnostic terminology, refinement of data collection tools and the development of a recruitment strategy. The adapted tools were subsequently piloted in four interviews to assess clarity and feasibility. RESULTS:Individuals with PD face distinct challenges for research participation. Stigma surrounding diagnostic labels contributes to a gap between clinical diagnosis and self-identification, while limited illness insight, cognitive impairments (e.g., reduced attention span), and distrust of research further complicate participation. As the NEED methodology relies on self-identification and self-report, these characteristics required several adaptations. First, inclusion criteria were broadened from the initial intention of focusing on schizophrenia to PD to accommodate diagnostic uncertainty and variation in illness insight, while non-stigmatising terminology was adopted for recruitment materials and survey instruments. Second, the questionnaire and interview guide were adapted to account for diagnostic variability, risk of non-differential misclassification and the need for clear, sensitive wording. Third, the recruitment strategy incorporated materials that were as minimally stigmatising as possible, a wide range of actors and channels, on-site support by researchers, and the option for proxy completion by legal representatives to enable inclusion of individuals with severe impairments. DISCUSSION:This study highlights methodological challenges specific to conducting needs assessments in PD and describes the adaptations required to refine the NEED toolbox for this population. The reflections presented here aim to guide future applications of the NEED framework in mental health and other complex, stigmatised conditions. PATIENT OR PUBLIC CONTRIBUTION:A person with lived experience of a psychosis disorder was actively involved throughout the entire study design. Their input was crucial in shaping the study design, informing the relevance and formulation of the questions in the questionnaire, and ensuring the study reflected the perspectives and priorities of people directly affected by PD.
INTRODUCTION:Patient and public involvement (PPI) in research maximises its relevance, quality, and impact by partnering with the public throughout the research journey. In Singapore, a PPI group named Patient Research Advocate and Guidance to Maximise Safety in Trials and Innovation Committee (PRAGMATIC) was established in 2020 by a public primary care institution to create a conducive platform for the public to provide feedback to primary care researchers on their research proposals. This pilot study aimed to evaluate the impact of the committee's feedback on the research process. METHODS:From 2023 to 2024, researchers were invited to present their patient-fronting research proposals to PRAGMATIC. Before the presentation, researchers submitted a lay-language research proposal summary that the committee reviewed in advance. The proposals were presented at 3-monthly PRAGMATIC meetings with the committee providing written and verbal feedback. After each meeting, researchers completed a questionnaire capturing the number, type, acceptability, and helpfulness of the committee's feedback. Reporting followed recommended PPI reporting standards (GRIPP2-LF). RESULTS:PRAGMATIC reviewed seven projects and generated 26 potentially actionable feedback. Researchers included two nurses, one medical student, one research associate, and three primary care physicians. Project topics included asthma, postnatal mental health, hearing loss, cervical cancer screening, female smoking, and osteoarthritis. The researchers accepted majority of the feedback (21/26, 80.8%) and rated them as helpful (24/26, 92.3%). The most impact was observed in intervention design and data collection, where feedback led to the adoption of remote interviews, reduced intervention duration, and medical device software refinement. Feedback on participant selection were less accepted but led to improved methodological justification. CONCLUSION:Initial evaluations indicate that a structured PPI programme can positively shape study design and implementation in primary care research. These findings are encouraging and have potential to inform future refinements to guide PPI in research. PATIENT OR PUBLIC CONTRIBUTION:PPI partners were involved in the co-design of study materials, ensuring their clarity, relevance, and acceptability to participants.
BACKGROUND:Public engagement has the potential to make research more impactful, and it has increased in recent years in cancer research. Yet, there is limited understanding of how this process of bringing lived experience into research works, and of what leads to tokenistic and non-tokenistic engagement. AIMS AND OBJECTIVES:To explore public engagement in cancer research in the United States from the perspective of both lived-experience experts and researchers. METHODS:A qualitative study consisting of interviews with 15 lived-experience experts engaged in cancer research and 15 cancer researchers. Data were analysed using reflexive thematic analysis. RESULTS:Findings are captured in four themes shared by both participant groups and mapped onto Jürgen Habermas's theory of communicative action, which helped explain the engagement process. First, public engagement was invaluable to research, but also personally and professionally. Second, underlying foundations and principles underpinned the non-tokenistic engagement process. Third, engagement led to the creation of a partnership between cancer researchers and lived-experience experts. Fourth, engagement was about creating and enriching culture within a research institution and in the community. CONCLUSIONS:The study provided a better understanding of public engagement in cancer research. Habermas's communicative action theory offered an analytical framework to elicit the importance of mutual understanding in developing common ground between lived-experience experts and researchers. It highlighted that tensions between lived-experience experts and researchers, choosing not to act on feedback, and limited institutional support can lead to tokenistic engagement. PATIENT OR PUBLIC CONTRIBUTION:Four Community Advisory Board members contributed to this study from design through dissemination. They co-developed topic guides, co-analysed data, co-wrote this paper and are named as co-authors.
INTRODUCTION:Following the COVID pandemic, direct-to-consumer (DTC) telemedicine services that offer medical expertise via remote electronic interfaces have surged in popularity. This paper explores the perspectives and experiences of patients using DTC telemedicine services in Australia, including their perceptions of benefits, concerns and interactions with traditional general practice. METHODS:This was a qualitative study using semi-structured interviews, which were recorded and transcribed. Thematic analysis was conducted using NVivo, with a combination of inductive and deductive coding. Participants were recruited from a previous survey on user experiences with up to five different DTC telemedicine services. RESULTS:Thirteen participants had experience with DTC telemedicine services for women's health, skin care, men's health and women's fertility. Four themes were identified: (1) Convenience, efficiency and greater access-flexible appointment scheduling, reduced wait times and the online user interface were major benefits of DTC telemedicine services. Participants also highlighted the capacity of DTC telemedicine to enhance healthcare accessibility for those living rurally or with mobility challenges; (2) The value of anonymity-DTC telemedicine facilitated care for potentially stigmatised conditions such as obesity and erectile dysfunction, encouraging some patients to seek care they might otherwise avoid; (3) Concerns about inappropriate use of medication-participants questioned whether ease of access might lead to inappropriate prescribing, and (4) Interactions with general practice-DTC telemedicine was perceived as more of a supplement to general practice rather than a replacement. Despite this, participants indicated that negative experiences with GPs contributed to DTC telemedicine use. CONCLUSION:DTC telemedicine was viewed as a convenient and efficient alternative to general practice for certain health issues. However, concerns were identified regarding prescribing safety, continuity of care and inequity in access. If regulatory gaps are addressed, collaboration with GPs improved and disparities in access minimised, DTC telemedicine has the potential to play a complementary role in strengthening Australia's primary healthcare system. PATIENT AND PUBLIC INVOLVEMENT:This research was undertaken in partial fulfilment of the requirements of a Doctor of Medicine program. Given the timeframe allotted for undertaking this research, formal PPIE was not possible. However, two members of the research team had experience using the services discussed in this study and drew upon these experiences in developing interview questions and interpreting findings.
BACKGROUND:Integrating the perspectives of people with lived experience is integral to developing new healthcare interventions. However, individuals from under-represented communities may face additional barriers to taking part in such patient and public involvement (PPI) activities. Within paediatric speech and language therapy (SLT), under-represented communities might include families from lower SES backgrounds and/or families where the majority language for that country is not spoken. Excluding families from under-represented communities poses the risk of new interventions not being acceptable to them, thus exacerbating pre-existing healthcare inequalities. OBJECTIVE:The aim of this study was to optimise the prospective acceptability of a new paediatric speech and language therapy intervention with parents from under-represented backgrounds, in the hope of optimising future accessibility to families from diverse communities. METHODS:An individualised PPI approach was taken, consisting of two semi structured interviews informed by the Theoretical Framework of Acceptability (TFA). Six parent partners from non-majority language and/or lower SES backgrounds were recruited through a local charity. In the first interview, parent partners were shown a video of the intervention and identified key areas for increasing acceptability. Refinements were made to the intervention by the project steering group in an online meeting. These refinements were the topic of the second interview, where the impact on prospective acceptability was explored. RESULTS:Following the first round of interviews, areas for improvement included consideration of access to/co-ordination with wider services, and the financial and practical implications for parents accessing the intervention. Most of the intervention refinements and solutions to potential barriers came directly from the parent partners themselves, rather than the steering group. In the second round of interviews, parent partners rated the intervention's prospective acceptability between 4/5 (acceptable) and 5/5 (very acceptable). CONCLUSION:By working with parent partners from under-represented communities, the research team was able to enhance the prospective acceptability of a new paediatric speech and language therapy intervention. Many refinements related to the wider healthcare and support system, rather than to the content of the intervention itself. This reinforces the importance of exploring and addressing wider contextual barriers within the intervention development process. PATIENT OR PUBLIC CONTRIBUTION:The methods for this project were co-designed with a project steering group consisting of 3 Speech and Language Therapists (one with specialist EDI expertise), a bi/multilingual education support worker, a specialist early years teacher, a parent of a child with developmental language disorder (DLD) and an adult with DLD. The steering group also assisted with identifying potential intervention refinements. The parent partners were responsible for identifying areas where acceptability could be increased and addressing the prospective acceptability of the intervention refinements.
BACKGROUND:Person-centred compassionate care (PCCC) shapes the quality of relationships between health care professionals (HCPs) and patients, influences how healthcare is experienced, and ultimately can impact patient outcomes and HCP satisfaction. There is limited evidence about patient perspectives of multidisciplinary PCCC in acute general medical and surgical wards. OBJECTIVE:This study aimed to explore patients' perceptions of PCCC to inform co-design of an intervention to enhance PCCC in general medical and surgical wards. METHODS:Sixty (60) inpatients on a general medical or general surgical ward completed the Sinclair Compassion Questionnaire (SCQ) three times-considering their interactions with doctors, nurses, and allied health separately. They also completed five qualitative questions about PCCC. An additional 20 patients or their carers were interviewed exploring the same five topic areas. Reflexive thematic analysis was used to analyse qualitative data. RESULTS:The median SCQ score was high (4.5; SEM = 0.05) indicating that participants perceived high levels of compassion from HCPs during their hospital admission. Fewer than 20 per cent (17.9%) of the SCQ scores were less than 4 out of 5 and more than half (51.2%) were 4.5 or higher. Analysis revealed no significant differences (p = 0.066) between professional groups (Doctors: median = 4.2, SEM = 0.10; Nurses: median = 4.75, SEM = 0.07; Allied Health: median = 4.25, SEM = 0.09). There were no significant differences in scores (p > 0.01) by ward type, length of stay, cultural diversity, or disability. Females rated allied health staff as significantly higher on SCQ (median = 4.9, SEM = 0.1) than males (median = 4, SEM = 0.15) (p = 0.003). Qualitative responses indicated many recommendations to enhance care. From 'little things' to 'seagulls' was a phrase co-created by the research team to encapsulate the range of participant perspectives across the themes. Co-produced themes and key messages to staff focussed on being in the moment, finding out about the whole patient and their journey, partnering with the patient to the level they choose, knowing that patients make allowances for the pressures on staff, and that small acts of kindness are critical to the patient experience. CONCLUSION:This co-produced research privileged the voice of a diverse group of patients and provided new and actionable insights regarding PCCC across HCPs in acute hospital general medical and general surgical wards. Findings emphasised that SCQ scoring was a useful 'temperature check' regarding PCCC indicating that some improvements were needed. However, there may be a ceiling effect for the tool which requires further research. Qualitative data indicated where improvements were needed.
BACKGROUND:Medication adherence in Parkinson's is complex, time-sensitive, and influenced by clinical, behavioural, and contextual factors. Educational interventions have attempted to support medication adherence; however, the scope, focus, and effectiveness of such interventions remain unclear. METHODS:This scoping review aimed to identify and map educational interventions for people with Parkinson's that included medication-related education. Seven databases were searched with no date restrictions. Quantitative, qualitative, and mixed-methods studies were eligible. Data were charted and synthesised using descriptive mapping and reflexive thematic analysis to explore intervention characteristics, reported evidence relating to medication adherence, intervention outcomes, and reported barriers and facilitators. RESULTS:Eight papers reporting seven educational interventions were included. Interventions varied widely in content, delivery mode, and intensity, with medication education often embedded within broader programmes rather than delivered as a standalone intervention. Evidence regarding the potential of educational interventions to support medication adherence was reported, although this was based on a limited number of studies using direct adherence measures and more commonly on proxy indicators such as changes in knowledge, beliefs, and self-management behaviours. Outcome measures were heterogeneous, limiting comparability. Improvements were more commonly observed in understanding, confidence, and communication than in sustained symptom outcomes. No study reported explicit use of behaviour change theory or co-design approaches involving people with Parkinson's or their informal carers. CONCLUSIONS:Educational interventions show potential to support Parkinson's medication adherence, particularly through mechanisms conceptually aligned with self-efficacy. Future interventions may be strengthened by explicit use of behaviour change theory and/or meaningful co-design with people with lived experience. LIVED EXPERIENCE OR PUBLIC CONTRIBUTION:A Research Involvement Manager from Parkinson's UK is a co-author and contributed to the design, conduct, and interpretation of this review, representing the perspectives of people living with Parkinson's. An advisory group comprising people with Parkinson's, carers, and healthcare professionals informed the wider research programme and reviewed the findings of this study. While no substantive changes were requested, this process supported interpretation and relevance to lived experience. Consistent with these perspectives, the review highlights a lack of co-design in existing interventions and advocates for greater involvement of people with Parkinson's in future intervention development.
ABSTRACT Background Patient and public involvement (PPI) enhances the relevance, acceptability and implementation potential of interventions. Objective To describe the adaptation of a cognitive‐behavioural therapy (CBT) based intervention (COMPASS) into an inflammatory bowel disease (IBD)‐specific version (COMPASS‐IBD), in partnership with individuals with IBD and healthcare professionals (HCPs). Setting and Participants Twelve individuals with IBD, recruited through previous COMPASS PPI networks and wider outreach to the IBD community, and three HCPs contributed to an iterative adaptation process. Design A four‐stage iterative adaptation process was conducted. First, an online workshop, one‐to‐one calls and clinic observations were conducted to explore the specific challenges of living with IBD and insights from these discussions were then used to guide adaptations. Proposed changes were reviewed through email and phone correspondence with PPI to check for acceptability and suitability. Finally, a post‐process reflection with collaborators was undertaken to inform future work. Results Key themes included the invisible and unpredictable nature of IBD, symptom burden, stigma and isolation. These informed IBD‐specific patient stories and refinement of content to enhance relevance and specificity. Sixty‐four recommendations were made, of which 56 were implemented. Conclusions Collaboration with PPI and HCP partners identified IBD‐specific needs and ensured that COMPASS‐IBD was acceptable and contextually appropriate. Embedding lived experience within intervention adaption may help to enhance implementation and engagement for interventions supporting individuals living with long‐term health conditions. Lived Experience or Public Contribution Our PPI collaborators were involved throughout the study, via an online workshop, one‐to‐one calls, and follow up email correspondence. They identified key challenges of living with IBD, reviewed adaptations and provided iterative feedback on changes to COMPASS‐IBD. Their input shaped the patient stories, programme content, and the framing of IBD‐specific issues, ensuring the relevance, tone and acceptability of the adapted intervention. PPI contributors also supported with the interpretation of findings and refinement of the manuscript. This work documents a meaningful partnership in the adaptation of a digital intervention. Clinical Trials Registration: The wider study was registered on ClinicalTrials.gov (NCT05330299).
ABSTRACT Background Patient and public involvement and engagement (PPIE) is increasingly prioritised in health professional education; however, how it is conceptualised, implemented, and evaluated within pre‐registration occupational therapy programmes remains unclear. This protocol outlines a scoping review designed to map how PPIE in occupational therapy education is conceptualised, operationalised, and reported internationally, and to identify reported barriers, facilitators, and outcomes. Methods This scoping review will adhere to the methodological framework of Arksey and O'Malley (2005), as refined by Levac et al. (2010). We will search seven databases (MEDLINE, CINAHL, PsycINFO, ERIC, ASSIA, Web of Science and OTseeker) and grey literature from 2000 onward. Using the Person‐Concept‐Context framework, eligible sources will include peer‐reviewed empirical studies and recognised grey literature reporting PPIE in pre‐registration occupational therapy education. Two reviewers will independently screen titles/abstracts and full texts, and extract data using a piloted charting tool, with third‐reviewer resolution. Findings will be synthesised using descriptive statistics and directed content analysis through a rights‐based lens. Reporting will follow PRISMA‐ScR. Discussion The review will generate the first occupational therapy specific, rights‐based synthesis of how PPIE is conceptualised, enacted, and evaluated in pre‐registration education internationally. Findings will inform evidence‐based, feasible, and equitable approaches to involvement, offering co‐created recommendations for educators, programme leaders, and regulatory bodies. This work will also identify gaps to guide future research and policy. Lived Experience or Public Contribution People with lived experience who contribute to occupational therapy education will be recruited as contributors to this review and involved at key stages, including search strategy development, screening, data interpretation, and synthesis. Contributors will be supported and remunerated in accordance with National Institute for Health and Care Research (2024) and Royal College of Occupational Therapists (2022) guidance, and their involvement will be documented using the GRIPP2 (Staniszewska et al., 2017) reporting framework.
ABSTRACT Background and Objective Gastrointestinal (GI) cancers pose a substantial burden on patients and care partners, yet outcomes research and clinical tools remain heavily weighted toward clinical endpoints over patient‐centred outcomes (PCOs). Without standardised PCOs, risk communication and shared decision‐making may revolve around endpoints misaligned with patient priorities. We aimed to identify PCOs meaningful to patients with GI cancer and their care partners. Design, Setting and Participants We conducted a qualitative focus group study with adult patients with a GI cancer diagnosis and their care partners, recruited from a tertiary cancer centre and patient partner organisations in Canada. Focus groups used open‐ended questions and hypothetical patient personas to elicit PCOs. Two researchers independently extracted PCO concepts from verbatim transcripts and synthesised them using a deductive‐inductive clustering approach informed by thematic analysis and the patient‐centred care framework. Results Overall, 15 patients and 13 care partners participated. We extracted 254 PCO concepts and consolidated them into 55 unique PCOs organised under 7 parent clusters: care experience (31% of mentions), psychosocial (25%), treatment (16%), lifestyle (12%), healthcare utilisation (8%), functional status (4%), and symptoms (3%). Six PCOs accounted for approximately half of all mentions: communication, care access, information access, treatment understanding, coping abilities, and finances. Patients most often raised psychosocial PCOs, whereas care partners more frequently mentioned functional status and symptom PCOs. Treatment‐related PCOs were a mutual concern. Discussion and Conclusions Patients and care partners identified 55 PCOs spanning dimensions not consistently captured in existing GI cancer instruments. These PCOs can be integrated in the development of a core outcome set for patient‐centred risk assessment and individualised prediction in GI cancer care. Patient and Public Contribution Three patient partners with lived experience of cancer contributed to the study as co‐investigators. They informed the focus group guide and its sequencing, advised on the language of recruitment materials, and refined data analysis and interpretation. Patients and care partners also took part as focus group participants.
ABSTRACT Background The Lived Experience Advisor Program (LEAP) was introduced as a new approach to consumer engagement within a large healthcare organisation. The programme was designed to professionalise and embed lived experience as a recognised form of expertise within organisational decision‐making, research, and quality improvement through formal paid employment. Objectives The aim of this study was to explore Lived Experience Advisor and stakeholder perspectives about the LEAP. Methods A qualitative descriptive study was conducted within the metropolitan health service in which the programme was initiated. Data was collected through audio‐recorded, individual, semi‐structured interviews from May to June 2025. Data analysis was undertaken using a thematic content analysis approach. Study Participants Consumers employed as Lived Experience Advisors ( n = 7) within the study organisation, and stakeholders who utilised the LEAP ( n = 7), participated in this study. Results Fourteen individuals participated. Since inception, Lived Experience Advisors have contributed to projects in youth health services, carer support, emergency care, and development of consumer engagement strategies. Three major themes emerged: (1) preparation for the lived experience advisor role, (2) valued contributions to organisational projects, and (3) restrictions on role influence. Comprehensive orientation and training are integral to the successful integration of Lived Experience Advisors as health service employees. Role clarity could be strengthened across the organisation. Participants described the value of organisational commitment to build consumership, with tangible benefits for various projects and individual growth. Components of the LEAP could be modified to maximise influential opportunities for Lived Experience Advisors. Discussion Employment of Lived Experience Advisors within the healthcare organisation across a range of clinical and operational projects has enhanced service planning and health literacy for diverse communities. Building a community of practice is needed to strengthen mentorship and professional development needs for Lived Experience Advisors. Conclusions The contribution of consumership to healthcare has been realised through implementation of the LEAP. Consideration is needed regarding working conditions to sustain retention and promote career progression. Patient or Public Contribution Consumers who were employed as Lived Experience Advisors within the study organisation provided valuable feedback regarding the study design. They were also invited to participate in the study.
ABSTRACT Background Emerging evidence indicates elevated suicidality during the menopausal transition, yet little is known about its impact on those providing support. Objective To explore how menopausal suicidality is experienced by informal carers and menopause‐focused healthcare professionals, and to identify relational and service‐level consequences. Design Qualitative study using semi‐structured interviews and reflexive thematic analysis. Setting and Participants Twenty‐eight participants were recruited: 19 healthcare professionals working within a specialist menopause clinic and 9 informal carers supporting women who had experienced suicidality during menopause. Interviews were conducted online. Main Variables Studied Participants' accounts of menopausal suicidality, caregiving burden, clinical responsibility and experiences of healthcare systems. Results Five interrelated themes were identified. Menopausal suicidality was described as cyclical, hidden and sometimes acute, with hormonally patterned fluctuations and perceived impulsivity. Emotional labour shifted into families, generating vigilance, fear and exhaustion. Clinicians described managing suicide risk within services not designed for crisis care. Participants also reported fragmented pathways in which women fell between hormonal and psychiatric services, and called for more integrated, anticipatory support. Discussion and Conclusions Menopausal suicidality exposes gaps between endocrine and mental healthcare, diffusing responsibility across services and increasing burden on carers and clinicians. Integrated care pathways, menopause‐specific suicide prevention training and support for informal and professional caregivers are needed. To our knowledge, this is the first qualitative study to examine caregiving experiences in menopausal suicidality. Patient or Public Contribution A Public Advisory Group with lived and professional experience informed the study focus and prioritised exploration of carer and clinician perspectives.
ABSTRACT Introduction Despite breast cancer disproportionately affecting ethnically diverse populations, these groups remain underrepresented in UK cancer clinical trials, limiting the validity and generalisability of research findings, including treatment efficacy and safety. Around one‐third of the UK's ethnic minority population is Muslim, yet little is known about Muslim women's experiences of breast cancer and clinical trial participation. This study aims to explore how faith, culture and religious beliefs influence Muslim women's experiences, understanding, perceptions and participation in cancer clinical trials. Methods Purposive and snowball sampling were used to recruit a diverse group of Muslim women with breast cancer. Women whose first language was non‐English were included. Semi‐structured interviews were conducted either face to face, online Teams or telephone. All participants completed a demographic questionnaire. Research ambassadors, well versed in the research protocol, supported translation and participants' linguistic needs. An inductive reflexive thematic analysis (RTA) was conducted to generate codes and themes, which were then mapped onto the capability, opportunity and motivation behaviour system COM‐B model. Results Fifteen Muslim women and three immediate family members were consented and interviewed. Participants were from a wide geographical area across Greater Manchester and Lancashire in the United Kingdom, representing diverse ethnicities, age and social position. Women with primary and secondary breast cancer participated; the majority were undergoing systemic anticancer therapy, and three had taken part in randomised clinical trials. RTA generated five main themes: ‘What defines who I am,’ ‘perception of cancer,’ ‘perception and experience of clinical trials,’ ‘information & education to support decision making,’ and ‘the role of the healthcare professional (HCP) in supporting trial participation.’ Women's capability to participate was shaped by their knowledge of clinical trials and access to information. Opportunities were influenced by sociocultural factors, including gender roles, family expectations and HCPs' cultural competence, while motivation was shaped by women's identity, religion and trust in HCPs. Conclusion This study provides insight into Muslim women's health‐related beliefs and behaviours that influence participation in cancer clinical trials. Findings will help identify areas where action can be taken at intrapersonal, interpersonal and community level to help empower women to participate in cancer clinical trials. Patient and Public Contribution Ethnically diverse patients and members from community grassroots organisations informed a culturally sensitive protocol. Research ambassadors contributed across the research cycle, including adapting interview materials, supporting recruitment and participation (particularly for non‐English speakers), and providing cultural and religious insight during analysis and interpretation.
ABSTRACT Background Caregivers may encounter short videos about paediatric general anaesthesia and neurodevelopment before consultation. We assessed their quality, reliability, usability and misinformation patterns, and considered the implications for parent‐centred risk communication. Methods On 15 August 2025, we used newly created accounts to retrieve the first 100 results from Douyin and Bilibili for two Chinese search terms. Two anaesthesiologists independently assessed eligible videos using GQS, MQ‐VET, JAMA benchmarks, mDISCERN and PEMAT‐A/V. A pre‐search PPIE consultation, conducted through brief one‐to‐one discussions with 10 family contributors, informed study framing and parent‐facing interpretation. Results Of 200 retrieved videos, 95 were included (Douyin, n = 74; Bilibili, n = 21). Douyin videos attracted more engagement, but quality did not differ by platform. Videos uploaded by anaesthesiologists, hospitals and news agencies tended to score higher than those uploaded by non‐anaesthesiologists in several domains, although these subgroup comparisons were exploratory. Misinformation occurred in 51 videos (53.7%); false safety assurances were most common (43/95, 45.3%). After false‐discovery‐rate correction, stratified analyses showed no significant differences by platform or uploader. Engagement was not a reliable indicator of quality, whereas video duration was positively correlated with mDISCERN, GQS and MQ‐VET. Conclusions Short videos were readily accessible but uneven in reliability and transparency. Popularity did not indicate quality. Preoperative communication should address online information, correct binary claims, explain exposure‐related modifiers and direct families to trustworthy clinician‐produced resources. Caregiver exposure and decision outcomes were not measured. Patient or Public Contribution Ten family contributors took part in brief one‐to‐one PPIE consultations during pre‐anaesthesia assessment. Their advice supported the use of lay search language and the parent‐facing interpretation of omissions and false reassurance. Contributors did not review or score videos, and their views were not treated as individual‐level research data.
