Health Expectations最新文献

{"title":"Perceptions and Experiences of a Multimodal Rehabilitation Program for People With Post-Acute COVID-19: A Qualitative Study","authors":"Beatriz Carpallo-Porcar, Sandra Calvo, Sara Pérez-Palomares, Laura Blázquez-Pérez, Natalia Brandín-de la Cruz, Carolina Jiménez-Sánchez","doi":"10.1111/hex.70283","DOIUrl":"https://doi.org/10.1111/hex.70283","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Home‑based rehabilitation has emerged as a practical solution for post‑acute phase COVID‑19 recovery, but patient perspectives on the different modalities remain underexplored.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Objective</h3>\u0000 \u0000 <p>To explore participants' perceptions and experiences after a 12‑week multimodal rehabilitation program delivered via asynchronous telerehabilitation versus a booklet after discharge and to identify the preferred format.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Qualitative descriptive study with two face‑to-face focus groups of post-discharge COVID-19 patients (<i>n</i> = 12; age range 41–75 years; 50% female; with fatigue > 4 on the Fatigue Severity Scale) that included participants from each intervention arm of a randomised pilot study. Semi‑structured interviews to determine patients' perceptions and experiences were recorded, transcribed verbatim and coded independently by two researchers using inductive thematic analysis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Three overarching themes emerged from the analysis: (1) Facilitators for engagement and adherence: Innovative digital tools and personalised guidance foster active participation by providing flexible access and systematic progress monitoring; (2) Barriers to sustained participation: Technological issues, physical limitations and fluctuating motivation serve as critical impediments, underscoring the potential benefits of hybrid intervention models; and (3) Therapeutic alliance as support: A robust, individualised therapeutic relationship enhances patient confidence and self-management, ultimately contributing to sustained empowerment and recovery.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>A multimodal home-based rehabilitation program with monitoring and personalisation by the physiotherapist is rated positively by post-acute COVID-19 patients, with asynchronous telerehabilitation emerging as the preferred method. Future research should investigate long‑term adherence, clinical efficacy and scalability.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Clinical Trial Registration</h3>\u0000 \u0000 <p>Clinialtrials.gov #NCT04794036.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>Post-acute COVID-19 patients contribut","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 3","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-04-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70283","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143889153","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Consumers' Contribution to Health Research: Australian Research Organisations' Perspectives","authors":"Mingming Zhou, Julia Dray, Anne Parkinson, Alice Richardson, Lucy Clynes, Jane Desborough","doi":"10.1111/hex.70258","DOIUrl":"https://doi.org/10.1111/hex.70258","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Despite growing recognition of the importance of consumer engagement in advancing consumer-oriented and relevant research, many researchers experience challenges in appropriately acknowledging consumers' contributions to the research process. A pivotal aspect of this challenge relates to the financial remuneration offered to consumers in recognition of their contributions to research in terms of time, skills and expertise. This may be due to a lack and inconsistency of reported practice and guidance regarding remuneration. We sought to explore current practices for recognising consumers' contribution to health research and to understand health organisations' experiences and perspectives regarding this.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A working group convened by Research Australia comprised of two academics, one PhD candidate and eight health research organisation representatives, including consumer-led organisations, was established to develop a survey to elucidate current consumer remuneration practices in Australia. Drawing on existing consumer engagement literature, the draft survey questions were constructed and finalised following review, discussion and reaching consensus among the working group. The survey was distributed online to 503 research organisation participants across Australia from December 2023 to February 2024. Quantitative data were analysed using descriptive statistics, and qualitative data were analysed using content analysis methods.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results/Findings</h3>\u0000 \u0000 <p>124 completed surveys were returned (25% response rate). 92% of participants supported recognition of consumer contributions to health research. Of this, 56% provided financial remuneration, while 36% provided non-financial forms of recognition, such as training and acknowledgement of academic outputs. However, recognition methods used in practice differed, and rates of financial remuneration varied across different levels of engagement. The need for national guidelines in consumer remuneration practice was expressed by 93% of participants.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Implications/Key Message</h3>\u0000 \u0000 <p>These survey findings support an imperative to establish national recommendations for consumer remuneration, tailored to the needs of different organisations and contexts in Australia.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient and Public Contribution</h3>\u0000 \u0000 <p>A working group formed with eight memb","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 3","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-04-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70258","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143883869","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"‘They Were Talking to Each Other but Not to Me’: Examining the Drivers of Patients' Poor Experiences During the Transition From the Hospital to Skilled Nursing Facility","authors":"James D. Harrison, Margaret C. Fang, Rebecca L. Sudore, Andrew D. Auerbach, Tasce Bongiovanni, Audrey Lyndon","doi":"10.1111/hex.70248","DOIUrl":"https://doi.org/10.1111/hex.70248","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Hospital-to-skilled nursing facility (SNF) transitions have been characterised as fragmented and having poor quality. The drivers, or the factors and actions, that directly lead to these poor experiences are not well described. It is essential to understand the drivers of these experiences so that specific improvement targets can be identified. This study aimed to generate a theory of contributing factors that determine patient and caregiver experiences during the transition from the hospital to SNF.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>We conducted a grounded theory study on the Medicine Service at an academic medical centre (AMC) and a short-term rehabilitation SNF. We conducted individual in-depth interviews with patients, caregivers and clinicians, as well as ethnographic observations of hospital and SNF care activities. We analysed data using dimensional analysis to create an explanatory matrix that identified prominent dimensions and considered the context, conditions and processes that result in patient and caregiver consequences and experiences.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>We completed 41 interviews (15 patients, 5 caregivers and 15 AMC and 6 SNF clinicians) and 40 h of ethnographic observations. ‘They were talking to each other, but not to me’ was the dimension with the greatest explanatory power regarding patient and caregiver experience. Patients and caregivers consistently felt disconnected from their care teams and lacked sufficient information leading to uncertainty about their SNF admission and plans for recovery. Key conditions driving these outcomes were patient and care team processes, including interdisciplinary team-based care, clinical training and practice norms, pressure to maintain hospital throughput, patient behaviours, the availability and provision of information, and patient's physical and emotional vulnerability. The relationships between conditions and processes were complex, dynamic and, at times, interrelated.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>This study has conceptualised the root causes of poor-quality experiences within the hospital-to-SNF care transition. Our theory generation identifies targets for clinical practice improvement, tailored intervention development and medical education innovations.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>We partnered with the Hospital Medicine Reengineering Network (HO","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 3","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-04-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70248","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143883868","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Digital Long Covid Communities—Shaping Diagnoses, Treatment Strategies and Modes of Expertise","authors":"Petter Almqvist-Ingersoll","doi":"10.1111/hex.70279","DOIUrl":"https://doi.org/10.1111/hex.70279","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Despite having been created on social media, research into the effects of online engagement on long Covid (LC) as a diagnosis is scarce. Studies on other health-related communities and patient participation argue that social media and other digital technologies have been instrumental in creating new ways for activism, advocacy and sharing of experiences. With its status as patient-made, LC constitutes an example of how diagnoses are (re)constructed through social interactions in addition to Western biomedical science and clinical practice. The aim of the study is to investigate the ways in which lived experiences and larger narratives of LC are communicated and form understandings of the condition as a heterogeneous diagnosis/phenomenon.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>This study uses netnography, mainly focused on hidden observations of patient support and advocacy forums in which users' posts are individually sourced and thematically analysed. These themes are further discussed to illustrate overarching discourse that contributes to the sense-making and creation of knowledge surrounding LC.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The study highlights three major themes, namely: users seeking commonalities in experienced symptoms, interpatient tinkering as a form of biohacking conceptualised as an epistemological process, and negotiating expertise.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Discussion</h3>\u0000 \u0000 <p>The study finds that narratives shared in online spaces regarding LC act as critical factors that serve not just the affected individuals' sense-making and understanding of their lived experience, but also in the construction of the diagnosis itself. Through sharing experiences, symptoms, scientific information and treatment options, forum users contribute to knowledge production processes that change the definition of LC as a diagnosis. Building on the sociology of diagnosis, I argue that LC serves as a significant example of how diagnoses are products of the entanglement between biomedicine, clinical practice, the social and the digital.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>The project operates under the premise that patients from different social, cultural and professional backgrounds participate in online discussions about long Covid and that these individuals work towards individual as well as collective well-being. As such, highlighting their engagement has","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 3","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-04-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70279","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143880076","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Adapting Experience-Based Co-Design to Disability Research: Co-Producing the CycLink Co-Design Study","authors":"John Joseph Carey, Alicia Spittle, Christine Imms, Nora Shields, Margaret Wallen, Finn O'Keefe, Miriam Joy Yates, Holly Skilbeck, Rachel Toovey","doi":"10.1111/hex.70276","DOIUrl":"https://doi.org/10.1111/hex.70276","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Participatory methods like experience-based co-design (EBCD) can be used to develop complex interventions, but may need adaptations when co-designers include young people with disability, parents and community partners. We aimed to adapt EBCD through co-production by involving people with lived experience of disability as co-researchers. This paper reports the co-produced protocol and reflects on co-researchers' contributions.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Guided by a six-stage co-production process, we formed a team of co-researchers, academic researchers, co-design convenors and evaluators. A five-person steering group, comprising three co-researchers and two academic researchers, led decision-making and project oversight. We communicated via videoconferencing, phone and email. Briefing documents, meeting minutes and diaries supported our reflections and reporting.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>We adapted EBCD to include people with disability through creative online methods and co-produced a two-part ‘CycLink Co-design Study’ protocol. Part 1 proposed using EBCD to design principles for a community cycling intervention (CycLink). Part 2 planned a mixed-methods evaluation of our adapted EBCD. Co-researchers influenced participant choice and accessibility by developing phased involvement options, inclusive consent processes and adapted research materials. Interpretative support during qualitative analysis improved the relevance and reflexive rigour of findings. However, resource constraints limited co-researcher involvement in conducting EBCD activities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Co-production enabled us to adapt EBCD for people with diverse support needs and invite under-represented populations (e.g., young people with childhood-onset disability) to co-design. Cumulative adjustments resulted from our disability expertise, guidelines and approaches facilitating co-designers' opportunities to engage. Future studies should consider early and ongoing co-researcher involvement within both processes.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>Two adults with disability and a parent of a young child with disability joined our team as co-researchers. Co-researchers valued flexible involvement, which ranged from consultative to collaborative. Co-researchers' experiential expertise influenced the relevance of project materials and qual","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 3","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-04-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70276","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143883870","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Experiences and Perceptions of Self-Harm in Rural-Dwelling Adults: A Rapid Review of Qualitative Evidence","authors":"Katie Saunders, William Nicholls, Nadia Corp, Tom Kingstone, Faraz Mughal, Carolyn A. Chew-Graham, Jane Southam, Tamsin Fisher","doi":"10.1111/hex.70268","DOIUrl":"https://doi.org/10.1111/hex.70268","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Self-harm is associated with factors that are relevant to and exacerbated by rurality. Living in rural areas may intensify existing socio-economic disadvantages linked to service access, employment opportunities, transport conditions and risks from hazardous environments. Geographical isolation and fragmented social networks, particularly those related to family, are also common among rural residents. Rurality is therefore likely to shape experiences of mental health problems, including self-harm. However, this literature has not been synthesised.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Aim</h3>\u0000 \u0000 <p>To synthesise current qualitative evidence on the experiences and perceptions of self-harm among rural-dwelling adults and care providers' perspectives and to identify knowledge gaps.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Approach</h3>\u0000 \u0000 <p>Rapid review of qualitative evidence identified via relevant electronic literature databases. Thematic synthesis was used to compare findings on perceptions and experiences of self-harm in rural areas. Confidence in synthesis findings was assessed using GRADE-CERQual.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Searches identified 1673 unique references, of which 14 were included in the final synthesis. Two themes were generated with high to moderate confidence: ‘experiences of rural self-harm’ with two subthemes ‘reasons for self-harm’ and ‘perceptions of self-harm’, and ‘access to healthcare’ with two subthemes: ‘healthcare practitioners' perceptions of rural self-harm’ and ‘lack of support and resources’. Various reasons and motivations for self-harm were identified; stigma was commonly reported. Services for rural residents who self-harmed were difficult to access. Healthcare practitioners in these areas may lack adequate training, which may maintain stigmatised views.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>The review identified shared experiences and motivations for self-harm across different rural contexts globally. Perceptions of self-harm by people with lived experience, family and healthcare professionals reflected stigmatised views, which impacted access to and provision of care. Experiences and perceptions of self-harm reported in the literature are somewhat overshadowed by data on suicide and suicide behaviours. Methodological implications are noted in terms of the complexity of extracting data about self-harm. Future research would help inform intervention development for ","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 3","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-04-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70268","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143871873","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Patient and Clinician Perspectives on Communication in Primary Care Centres in Qatar—A Focus Group Study","authors":"Nancy Dixon, Liz Cox, Bayan Fraihat, Tareq Khalil Alzeq, Mohammed Abdalla, Nawal Khattabi","doi":"10.1111/hex.70280","DOIUrl":"https://doi.org/10.1111/hex.70280","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>The Primary Health Care Corporation (PHCC) in Qatar manages 31 health centres serving a diverse population of over 1.7 million people. PHCC is fully committed to providing people-centred care. Patients are routinely asked to complete satisfaction surveys. The surveys have shown continued shortcomings in patients' perceptions of communication with staff. PHCC decided to carry out an improvement collaborative among all centres on improving communication with patients. A realist review was carried out to identify possible communication interventions that improve the outcome of patient satisfaction with communication. Most research studies in the review were carried out in Western countries where patient expectations and experiences may differ. Therefore, focus groups of patients and staff were carried out to learn how patients and staff in Qatar perceive communication in the health centres.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>The purpose of the focus groups was to learn directly how patients and health centre staff experience communication with each other and if the issues experienced could potentially be addressed by the interventions identified in the evidence base. 18 focus groups were carried out, 9 each with patients and multiprofessional staff. Questions were derived from issues raised in research on patient–healthcare professional communication in primary care.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Patients' main concern was how they are welcomed to a health centre, particularly their desire to be greeted with a smile and welcomed courteously. They also discussed confusion about how the health centres work and a lack of understanding of health-related information. Staff groups also raised the importance of welcoming patients; they also discussed patients' lack of understanding of healthcare subjects. Some issues were consistent with research findings; others were unique to the Qatar setting. Patients focused on their expectations to be seen quickly, whereas staff were aware of the demands on the service and difficulties in meeting patient expectations.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The focus groups identified key issues related to patient–healthcare professional communication in primary care centres in Qatar. These issues were used to set priorities for the improvement collaborative on patient-centred communication involving all the health centres.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient and Public","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 3","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-04-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70280","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143871874","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Stakeholder Involvement in the Development of a New Proactive Clinical Review of Patients Prescribed Opioid Medicines Long-Term for Persistent Pain in Primary Care","authors":"Sarah A. Harrisson, Clare Jinks, Nicola Cornwall, Charlotte Woodcock, Lisa Dikomitis, Toby Helliwell, Adele Higginbottom, Janet Lefroy, Roger Knaggs, Tamar Pincus, Miriam Santar, Claire Sillitto, Matthew Webb, Simon White, Christian D. Mallen, Julie Ashworth","doi":"10.1111/hex.70264","DOIUrl":"https://doi.org/10.1111/hex.70264","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Stakeholder involvement is a core element of the Medical Research Council (MRC) framework for developing and evaluating complex interventions, but approaches to involve stakeholders are not well-reported. We outline how stakeholders contributed to co-designing a Proactive clinical Review of patients taking Opioid Medicines long-term for persistent Pain led by Pharmacists working in primary care Teams (the PROMPPT intervention—a review and pharmacist training package).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>We brought key stakeholders together to co-design the PROMPPT intervention using a person-based approach, alongside evidence from best practice guidance. We established a community of practice comprising three complementary groups: a patient advisory group, a pharmacist advisory group and a mixed stakeholder group. Patient stakeholders were identified from an existing patient involvement group. Professional stakeholders were identified using networks and social media. The three groups met in iterative workshops with predefined aims. We offered reimbursement for the stakeholders' time.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Outcomes</h3>\u0000 \u0000 <p>The patient advisory group (<i>n</i> = 10), pharmacist advisory group (<i>n</i> = 6) and mixed stakeholder group (<i>n</i> = 16) each met for 2 or 3 workshops between April 2019 and February 2020. Stakeholders had expertise, often cross-cutting, in lived experience, persistent pain, opioids, delivering primary healthcare and/or promoting behaviour change. Patient stakeholders provided their perspectives of consulting about their pain and opioids. Pharmacist stakeholders provided their perspectives on how pain reviews were happening in practice and on considerations for training (e.g., vignettes and experiential learning were considered important). The mixed stakeholder group provided a breadth of views highlighting current practice, including the value of engaging the wider GP practice team, issues around clinical responsibility for prescribing and the fact that international clinical guidance was not always relevant to UK primary care.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>By understanding the context of the PROMPPT intervention, stakeholders worked to develop a new pharmacist-led primary care review ahead of feasibility testing. We make recommendations for future developers of complex interventions.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient and Public Contribution</h3>\u0000 \u0000 ","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 3","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-04-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70264","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143875550","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Multimodal Analysis of Stories Told by Mental Health Influencers on TikTok","authors":"Alex Christiansen, Shioma-Lei Craythorne, Paul Crawford, Michael Larkin, Aalok Gohil, Spencer Strutt, Ruth Page","doi":"10.1111/hex.70226","DOIUrl":"https://doi.org/10.1111/hex.70226","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Social media influencers are powerful storytellers who function as conduits of public health communication and may contribute significantly to young people's mental health literacy. Influencers who discuss mental health include health professionals, wellness practitioners and experts by lived experience. As yet, there has been no multimodal analysis of how these three influencer types narrate mental health issues. This study critically evaluates 398 TikTok videos to show how three distinct types of influencers construct multimodal narratives around mental health.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Data was collected using the TikTok Research API and annotated for narrative patterns and visual formatting using an inductively created multimodal framework.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The analysis shows important differences between the storytelling practices of health professionals, who inform others through talking head explainers, enactments and stitches, and lived experience influencers who invited shared perspectives on their stories of illness, treatment and recovery through compilations and ‘watch as I do this’ formats. Wellness practitioners occupy an interdiscursive mid-space, blending the verbal aspects of ‘informing’ (explainers) with the visual narration of ‘shared experience’ to promote solutions through recommendation and advertising. The data also highlights similarities between the health professionals and wellness influencers in their use of marketing calls to action, indicating the commercialisation of mental health solutions offered in TikTok videos.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>It is concerning that the gap between information and support provided on TikTok may lead to partial and imbalanced development of mental health literacy by adolescent users and that content provided by certain influencer types mimics authoritative and authentic communication but promotes non-medical solutions to mental health, unsupported by evidence.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Involvement</h3>\u0000 \u0000 <p>Twelve young people with lived experience of mental health challenges, aged between 16 and 25, were recruited through The McPin Foundation to form the young people's advisory group (YPAG) for the project. This age range incorporates adolescents and ‘emerging adults’ who are likely to experience a range of life transitions and encounter challenges in mental","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 3","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-04-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70226","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143871452","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Synergies, Discrepancies, and Action Priorities: A Statewide Engagement Study to Strengthen Clinical Research in Cerebral Palsy","authors":"Melissa M. Murphy, Gavin T. Colquitt, Paige S. Ryals, Katie Shin, William C. Kjeldsen, Allison McIntyre, Sydni V. W. Whitten, Christopher M. Modlesky, Nathalie L. Maitre","doi":"10.1111/hex.70257","DOIUrl":"https://doi.org/10.1111/hex.70257","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Cerebral palsy (CP) clinical research is fraught with challenges, in part due to health-related disparities common among people with disabilities. Perspectives of people with lived experience of CP, clinicians and researchers vary on how to address these disparities. The present initiative explores synergies and discrepancies among stakeholders (<i>n</i> = 212) representing these partner groups in perceived barriers and facilitators to high-quality clinical CP research and robust trainee pathways. The overarching goal is to generate priority actions to empower meaningful partner group engagement in CP research and, ultimately, improve health outcomes for people with CP.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Grounded in empowerment theory, mixed methods needs assessments were conducted separately with partner groups to capture perspectives on barriers and facilitators to high-quality CP research and strong trainee pathways. Thematic analysis was applied to focus groups and interviews to identify themes and subthemes.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Discrepancies among partner groups emerged related to informational needs, community connection, ethical research and equitable representation in research, and fair compensation for lived experience partner engagement in the research process.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Ongoing opportunities for researcher action to empower partner group engagement include building shared purpose, nurturing social connection within and among groups and intentional efforts to build trust and codesign studies.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>The initiative described here was informed by caregivers of children with CP from Georgia, USA, using a community-based participatory research (CBPR) approach. CPBR is a collaborative approach, designed to give communities, which here include people with lived experience of CP, control over research processes and outcomes. Their perspectives were essential to the premise of this study and guided data interpretation, especially with regard to how their perspectives may or may not correspond to those of CP researchers and clinicians. To ensure inclusion of all perspectives, individuals with CP were also represented in these latter two engagement groups. Finally, the design, conduct, analysis and interpretation of data were informed by a researcher and a clinician-scient","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 3","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-04-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70257","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143871681","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}