Camille Cronin, Sara Donevant, Kerri-ann Hughes, Marja Kaunonen, Jette Marcussen, Rhonda Wilson
Menopause, a significant life transition for half the global population, intersects biological, cultural and social dimensions. Despite its universal occurrence, menopause research has historically been dominated by biomedical perspectives, often neglecting women's voices and diverse experiences. This article highlights the importance of including women's perspectives in menopause research to ensure relevance, accuracy and equity. It explores cultural variations in menopause experiences, the impact of socioeconomic status and the often-overlooked emotional and psychological dimensions. This article advocates for participatory approaches, emphasising that women's involvement enhances research design, implementation and policy development. Evidence-based interventions that are tailored to the individual can better address the diverse needs of menopausal women. The discussion extends to addressing health disparities, calling for inclusive research and policies to ensure equitable access to care. Ultimately, empowering women through co-designed research and inclusive policies can transform the menopause journey into an enriching life phase, promoting resilience and inclusivity across communities. This paradigm shift in menopause research and policy highlights the need for diversity, collaboration and evidence-based approaches to improve health outcomes and quality of life for all women.
Patient or Public Contribution
This article has been informed by a menopause service user group who discuss their experiences of menopause. The group was formed because of initial qualitative research and now meet on a regular basis to co-design and co-produce activities that inform ongoing research for the menopause taskforce.
{"title":"Amplifying Women's Voices in Menopause Research: The Importance of Inclusive Perspectives","authors":"Camille Cronin, Sara Donevant, Kerri-ann Hughes, Marja Kaunonen, Jette Marcussen, Rhonda Wilson","doi":"10.1111/hex.70163","DOIUrl":"10.1111/hex.70163","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 <p>Menopause, a significant life transition for half the global population, intersects biological, cultural and social dimensions. Despite its universal occurrence, menopause research has historically been dominated by biomedical perspectives, often neglecting women's voices and diverse experiences. This article highlights the importance of including women's perspectives in menopause research to ensure relevance, accuracy and equity. It explores cultural variations in menopause experiences, the impact of socioeconomic status and the often-overlooked emotional and psychological dimensions. This article advocates for participatory approaches, emphasising that women's involvement enhances research design, implementation and policy development. Evidence-based interventions that are tailored to the individual can better address the diverse needs of menopausal women. The discussion extends to addressing health disparities, calling for inclusive research and policies to ensure equitable access to care. Ultimately, empowering women through co-designed research and inclusive policies can transform the menopause journey into an enriching life phase, promoting resilience and inclusivity across communities. This paradigm shift in menopause research and policy highlights the need for diversity, collaboration and evidence-based approaches to improve health outcomes and quality of life for all women.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>This article has been informed by a menopause service user group who discuss their experiences of menopause. The group was formed because of initial qualitative research and now meet on a regular basis to co-design and co-produce activities that inform ongoing research for the menopause taskforce.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 1","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-01-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11751719/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143016864","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}
Lisa D. Hawke, Wuraola Dada-Phillips, Hajar Seiyad, Josh Orson, Lianne Goldsmith, Susan Conway, Adam Jordan, Natasha Y. Sheikhan, Melissa Hiebert, Sean Kidd, Kerry Kuluski
<div> <section> <h3> Introduction</h3> <p>People with lived experience of mental health and/or substance use conditions and their families (PWLE) are increasingly engaged in research, yet rigorous guidelines for engagement are lacking. This study aims to co-design best practice guidelines to support the authentic, meaningful engagement of PWLE in mental health and/or substance use health research.</p> </section> <section> <h3> Methods</h3> <p>A multi-panel modified Delphi study was conducted with 61 expert panelists (35 PWLE and family members, 26 researchers/research support staff from across Canada). Participants rated 56 recommendations for importance and clarity. Consensus was defined as ≥ 70% of participants rating items at 6 or 7 on a 7-point Likert scale (‘very important’ or ‘essential’). Qualitative feedback was analysed using content analysis to identify new items and reviewed for improvements in item clarity. After each round, items not meeting the established threshold of importance were removed. Items with low clarity scores were reworded. A PWLE advisory panel was actively involved throughout the study's design, implementation, interpretation, and reporting, ensuring that the perspectives of people with lived experience were integrated throughout the research process.</p> </section> <section> <h3> Results</h3> <p>Three Delphi Rounds were conducted. In Round 1, importance ratings ranged from 51.7% to 96.7% of participants ranking the items above the established threshold (average 80.1%), with clarity ratings ranging from 39.3% to 86.9% (average 70.7%) and an average importance coefficient of variation (CV) of 0.16. Four items were deleted, two new items were added and fifty-five items were revised. In Round 2, 60 (98.4%) participants responded. Importance ratings ranged from 57.6% to 96.7% (average 80.2%; average CV = 0.20). Clarity ratings ranged from 50.9% to 93.2% (average 77.9%). Five items were deleted and eleven revised. In Round 3, 60 (98.4%) participants provided importance ratings ranging from 66.7% to 98.3% (average 80.8%; average CV = 0.20), and clarity ratings ranging from 63.3% to 94.9% (average 81.1%). Three items were deleted and nine were revised. Forty-four final best practices are proposed.</p> </section> <section> <h3> Conclusion</h3> <p>These co-developed best practice guidelines offer recommendations for meaningful PWLE engagement in mental health and/or substance use health research. By following these guidelines, research teams can ensure that PWLE contributions are genuinely valued and effectively integrated, ult
{"title":"Best Practices Guidelines for the Engagement of People With Lived Experience and Family Members in Mental Health and Substance Use Health Research: A Modified Delphi Consensus Study","authors":"Lisa D. Hawke, Wuraola Dada-Phillips, Hajar Seiyad, Josh Orson, Lianne Goldsmith, Susan Conway, Adam Jordan, Natasha Y. Sheikhan, Melissa Hiebert, Sean Kidd, Kerry Kuluski","doi":"10.1111/hex.70152","DOIUrl":"10.1111/hex.70152","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>People with lived experience of mental health and/or substance use conditions and their families (PWLE) are increasingly engaged in research, yet rigorous guidelines for engagement are lacking. This study aims to co-design best practice guidelines to support the authentic, meaningful engagement of PWLE in mental health and/or substance use health research.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A multi-panel modified Delphi study was conducted with 61 expert panelists (35 PWLE and family members, 26 researchers/research support staff from across Canada). Participants rated 56 recommendations for importance and clarity. Consensus was defined as ≥ 70% of participants rating items at 6 or 7 on a 7-point Likert scale (‘very important’ or ‘essential’). Qualitative feedback was analysed using content analysis to identify new items and reviewed for improvements in item clarity. After each round, items not meeting the established threshold of importance were removed. Items with low clarity scores were reworded. A PWLE advisory panel was actively involved throughout the study's design, implementation, interpretation, and reporting, ensuring that the perspectives of people with lived experience were integrated throughout the research process.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Three Delphi Rounds were conducted. In Round 1, importance ratings ranged from 51.7% to 96.7% of participants ranking the items above the established threshold (average 80.1%), with clarity ratings ranging from 39.3% to 86.9% (average 70.7%) and an average importance coefficient of variation (CV) of 0.16. Four items were deleted, two new items were added and fifty-five items were revised. In Round 2, 60 (98.4%) participants responded. Importance ratings ranged from 57.6% to 96.7% (average 80.2%; average CV = 0.20). Clarity ratings ranged from 50.9% to 93.2% (average 77.9%). Five items were deleted and eleven revised. In Round 3, 60 (98.4%) participants provided importance ratings ranging from 66.7% to 98.3% (average 80.8%; average CV = 0.20), and clarity ratings ranging from 63.3% to 94.9% (average 81.1%). Three items were deleted and nine were revised. Forty-four final best practices are proposed.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>These co-developed best practice guidelines offer recommendations for meaningful PWLE engagement in mental health and/or substance use health research. By following these guidelines, research teams can ensure that PWLE contributions are genuinely valued and effectively integrated, ult","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 1","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-01-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11745228/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143016868","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}
Benjamin Shemesh, Jacinta L. Opie, Rodney L. Dunn, Garth Mclaughlin, Vivek Argawal, Amanda Pomery, Chris Mac Manus, Colin O'Brien, Katrina Lewis, Max Shub, Paula Wilton, Prassannah Satasivam, Melanie Evans, Jeremy Millar, Sue M. Evans
Introduction
Men with prostate cancer (PCa) and their support providers face challenges in accessing high-quality, impartial information tailored to their specific needs to enhance their overall care and decision-making. We describe the development, piloting and evaluation of the co-designed web portal ‘BroSupPORT’.
Methods
IT teams developed and integrated BroSupPORT into the Victorian Prostate Cancer Outcomes Registry (PCOR-Vic) electronic patient-reported outcome follow-up process. A comparator tool was built enabling men to compare their patient-reported outcome results against men of similar age, risk profile and after the same treatment. PCOR-Vic participants were invited to access BroSupPORT after 12 months of follow-up patient-reported outcome measure completion. Factors associated with consent to BroSupPORT were determined using logistic regression. Portal access data were gathered from PCOR-Vic data extracts and Google Analytics. A survey on portal exit and 2 weeks after consent was used to collect feedback.
Results
Over a 4-month pilot, 331/583 (57%) men consented to accessing BroSupPORT. Among those men who accessed the portal, the majority (209/331 =63%) were diagnosed in a private hospital and resided in a major city (214/331=65%). On average, men spent 3:20 min on the portal, with sexual function aspects receiving the most attention. Twenty-three percent of men revisited the portal during the pilot. Most men found the portal easy to use, reassuring and informative, while 9% found the patient-reported comparisons difficult to interpret.
Conclusion
A patient portal—enabling men to compare their patient-reported outcomes with other similar men and providing access to information and resources—may be a scalable solution in addressing the complex supportive care needs of men with PCa on a population basis.
{"title":"Developing, Piloting and Evaluating a Patient Support Portal for Men With Prostate Cancer in Victoria: An Action Research Study","authors":"Benjamin Shemesh, Jacinta L. Opie, Rodney L. Dunn, Garth Mclaughlin, Vivek Argawal, Amanda Pomery, Chris Mac Manus, Colin O'Brien, Katrina Lewis, Max Shub, Paula Wilton, Prassannah Satasivam, Melanie Evans, Jeremy Millar, Sue M. Evans","doi":"10.1111/hex.70149","DOIUrl":"10.1111/hex.70149","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Men with prostate cancer (PCa) and their support providers face challenges in accessing high-quality, impartial information tailored to their specific needs to enhance their overall care and decision-making. We describe the development, piloting and evaluation of the co-designed web portal ‘BroSupPORT’.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>IT teams developed and integrated BroSupPORT into the Victorian Prostate Cancer Outcomes Registry (PCOR-Vic) electronic patient-reported outcome follow-up process. A comparator tool was built enabling men to compare their patient-reported outcome results against men of similar age, risk profile and after the same treatment. PCOR-Vic participants were invited to access BroSupPORT after 12 months of follow-up patient-reported outcome measure completion. Factors associated with consent to BroSupPORT were determined using logistic regression. Portal access data were gathered from PCOR-Vic data extracts and Google Analytics. A survey on portal exit and 2 weeks after consent was used to collect feedback.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Over a 4-month pilot, 331/583 (57%) men consented to accessing BroSupPORT. Among those men who accessed the portal, the majority (209/331 =63%) were diagnosed in a private hospital and resided in a major city (214/331=65%). On average, men spent 3:20 min on the portal, with sexual function aspects receiving the most attention. Twenty-three percent of men revisited the portal during the pilot. Most men found the portal easy to use, reassuring and informative, while 9% found the patient-reported comparisons difficult to interpret.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>A patient portal—enabling men to compare their patient-reported outcomes with other similar men and providing access to information and resources—may be a scalable solution in addressing the complex supportive care needs of men with PCa on a population basis.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 1","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-01-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11743188/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143016880","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}
Eva S. Cohen, Dionne S. Kringos, Fleur Grandiek, Lisanne H. J. A. Kouwenberg, Nicolaas H. Sperna Weiland, Cristina Richie, Wouter J. K. Hehenkamp, Johanna W. M. Aarts
<div> <section> <h3> Introduction</h3> <p>The ethical obligation to reduce the environmental impact of healthcare systems prompts an exploration of if and when environmental concerns should be integrated into clinical decision-making. In this study, we aimed to elucidate patients' attitudes regarding the provision of environmental information in healthcare decision-making and to identify preferred approaches for integrating these considerations into patient–provider consultations.</p> </section> <section> <h3> Methods</h3> <p>This interview study served as an in-depth follow-up of a survey study on gynaecological patients' perspectives on environmental sustainability within healthcare settings. We conducted semistructured interviews with 14 patients from two Dutch outpatient clinics between February and May 2024. We employed reflexive thematic analysis to analyse the data.</p> </section> <section> <h3> Results</h3> <p>Five main themes were developed from the data: (1) Patients are an integral part of the transition to sustainable healthcare, (2) Patients are open to information on environmental impact of healthcare, (3) Information on environmental impact should be tailored to the individual patient and context, (4) Patients vary in preferences for involvement in decision-making related to environmental sustainability and (5) Patients prioritize individual health over environmental concerns in healthcare decision-making.</p> </section> <section> <h3> Conclusion</h3> <p>The findings of our study underscore the importance of integrating sustainability into clinical decision-making, aligning with bioethical principles and the expectations and goals of patients. By ensuring that environmental considerations are introduced in a personalized and context-appropriate manner within patient–provider interactions, healthcare can foster greater support for sustainable practices.</p> </section> <section> <h3> Patient or Public Contribution</h3> <p>Patients were involved in developing the pre-interview questionnaire. The preliminary results of the study were presented to healthcare professionals from various backgrounds during a meeting of the Dutch Green Care Alliance, after which the input was incorporated into the interpretation of the study results. Finally, the complete manuscript was presented to representatives from the Dutch Patient Federation to obtain their input on the interpretation and implications of our research. The interpretation of our results
{"title":"Patients' Attitudes Towards Integrating Environmental Sustainability Into Healthcare Decision-Making: An Interview Study","authors":"Eva S. Cohen, Dionne S. Kringos, Fleur Grandiek, Lisanne H. J. A. Kouwenberg, Nicolaas H. Sperna Weiland, Cristina Richie, Wouter J. K. Hehenkamp, Johanna W. M. Aarts","doi":"10.1111/hex.70155","DOIUrl":"10.1111/hex.70155","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>The ethical obligation to reduce the environmental impact of healthcare systems prompts an exploration of if and when environmental concerns should be integrated into clinical decision-making. In this study, we aimed to elucidate patients' attitudes regarding the provision of environmental information in healthcare decision-making and to identify preferred approaches for integrating these considerations into patient–provider consultations.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>This interview study served as an in-depth follow-up of a survey study on gynaecological patients' perspectives on environmental sustainability within healthcare settings. We conducted semistructured interviews with 14 patients from two Dutch outpatient clinics between February and May 2024. We employed reflexive thematic analysis to analyse the data.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Five main themes were developed from the data: (1) Patients are an integral part of the transition to sustainable healthcare, (2) Patients are open to information on environmental impact of healthcare, (3) Information on environmental impact should be tailored to the individual patient and context, (4) Patients vary in preferences for involvement in decision-making related to environmental sustainability and (5) Patients prioritize individual health over environmental concerns in healthcare decision-making.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>The findings of our study underscore the importance of integrating sustainability into clinical decision-making, aligning with bioethical principles and the expectations and goals of patients. By ensuring that environmental considerations are introduced in a personalized and context-appropriate manner within patient–provider interactions, healthcare can foster greater support for sustainable practices.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>Patients were involved in developing the pre-interview questionnaire. The preliminary results of the study were presented to healthcare professionals from various backgrounds during a meeting of the Dutch Green Care Alliance, after which the input was incorporated into the interpretation of the study results. Finally, the complete manuscript was presented to representatives from the Dutch Patient Federation to obtain their input on the interpretation and implications of our research. The interpretation of our results ","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 1","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-01-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11743189/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143016906","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}
Disabled public contributors continue to experience challenges with inclusion, despite inclusive patient and public involvement (PPI) being regarded as the gold standard in research practice and despite disabled PPI contributors often making up a significant proportion of all public contributors [1]. With the recent Disability Framework from the National Institute for Health and Care Research (NIHR), which commits to disability inclusion in health and healthcare research [1], it is timely to reflect on the current situation.
This article is written in the first person by Sandra Paget and Agata Pacho, who share their perspectives as a PPI contributor and an academic leading PPI, respectively. Sandra is an experienced reviewer for the NIHR and has collaborated with academics across the UK. Having lived with a rare neurological condition since early childhood, she founded the original Buckinghamshire Neurological Alliance and served on the Executive Committee of the National Neurological Alliance, representing Regional Neurological Alliances. In this article, Sandra reflects on instances where her ability and willingness to contribute to research were limited by accessibility barriers or a lack of adequate access. She argues that these barriers not only affect individual PPI activities but also have a long-term impact on healthcare services, making it harder for disabled people to live independently for longer. Agata, an Assistant Professor at the London School of Hygiene & Tropical Medicine (LSHTM), leads PPI for the NIHR Policy Research Unit in Policy Innovation and Evaluation (PIRU). Here, Agata discusses how the notion of reasonable adjustments may, in certain cases, be unhelpful or even counterproductive to fostering inclusivity within PPI. Instead, Agata suggests that embedding a duty of care into how PPI is conducted could be a more effective way to break down barriers and ensure greater accessibility for disabled contributors.
Sandra Paget: conceptualisation, writing–original draft, writing–review and editing. Agata Pacho: writing–review and editing, writing–original draft.
The authors have nothing to report.
The authors declare no conflicts of interest.
{"title":"Access to Inclusion Thinking Beyond Reasonable Adjustments","authors":"Sandra Paget, Agata Pacho","doi":"10.1111/hex.70157","DOIUrl":"10.1111/hex.70157","url":null,"abstract":"<p>Disabled public contributors continue to experience challenges with inclusion, despite inclusive patient and public involvement (PPI) being regarded as the gold standard in research practice and despite disabled PPI contributors often making up a significant proportion of all public contributors [<span>1</span>]. With the recent Disability Framework from the National Institute for Health and Care Research (NIHR), which commits to disability inclusion in health and healthcare research [<span>1</span>], it is timely to reflect on the current situation.</p><p>This article is written in the first person by Sandra Paget and Agata Pacho, who share their perspectives as a PPI contributor and an academic leading PPI, respectively. Sandra is an experienced reviewer for the NIHR and has collaborated with academics across the UK. Having lived with a rare neurological condition since early childhood, she founded the original Buckinghamshire Neurological Alliance and served on the Executive Committee of the National Neurological Alliance, representing Regional Neurological Alliances. In this article, Sandra reflects on instances where her ability and willingness to contribute to research were limited by accessibility barriers or a lack of adequate access. She argues that these barriers not only affect individual PPI activities but also have a long-term impact on healthcare services, making it harder for disabled people to live independently for longer. Agata, an Assistant Professor at the London School of Hygiene & Tropical Medicine (LSHTM), leads PPI for the NIHR Policy Research Unit in Policy Innovation and Evaluation (PIRU). Here, Agata discusses how the notion of reasonable adjustments may, in certain cases, be unhelpful or even counterproductive to fostering inclusivity within PPI. Instead, Agata suggests that embedding a duty of care into how PPI is conducted could be a more effective way to break down barriers and ensure greater accessibility for disabled contributors.</p><p><b>Sandra Paget:</b> conceptualisation, writing–original draft, writing–review and editing. <b>Agata Pacho:</b> writing–review and editing, writing–original draft.</p><p>The authors have nothing to report.</p><p>The authors declare no conflicts of interest.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 1","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-01-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11739116/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143016859","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}
Ziwei Liu, Shu Liu, Jiaxing Shi, Yanming Yang, Yuan Zhong, Jiaxin Li
<div> <section> <h3> Objectives</h3> <p>The study aims to understand the return to work (RTW) needs of young and middle-aged people who have experienced a stroke and to contribute to the development of supportive RTW services.</p> </section> <section> <h3> Design</h3> <p>A qualitative study employing the phenomenological method.</p> </section> <section> <h3> Participants</h3> <p>Eleven young and middle-aged people who have experienced a stroke participated in the study.</p> </section> <section> <h3> Methods</h3> <p>Semi-structured in-depth interviews were conducted and analysed using Colaizzi's 7-step method to identify and categorize the RTW needs of participants.</p> </section> <section> <h3> Results</h3> <p>The analysis delineated four overarching thematic categories of RTW needs among the participants: self-management needs, emphasizing the regulation of symptoms, health maintenance and recovery planning; social support needs, highlighting the significance of workplace accommodations, professional medical guidance, and emotional encouragement from companions and family; the need for information related to returning to work, which includes accessing resources on rehabilitation opportunities, labour rights and professional consultation services; and personal development needs, focusing on fostering self-worth, identifying growth opportunities and acquiring new skills to adapt to changing professional demands.</p> </section> <section> <h3> Conclusion</h3> <p>The diverse and comprehensive needs of young and middle-aged people who have experienced a stroke underscore the importance of multifaceted support from healthcare professionals. This support should encompass medical, psychological, informational and skill-development aspects and should involve enhanced communication and collaboration with relevant stakeholders to facilitate a successful RTW.</p> </section> <section> <h3> Patient or Public Contribution</h3> <p>This study was designed without direct involvement from patients or the public in the development of the research question, the design of the study, or the conduct of the research. This decision was informed by the specific focus on qualitative experiences and perceptions of stroke survivors regarding their RTW journey, which relied heav
{"title":"Understanding the Needs of Young and Middle-Aged Chinese People Who Have Experienced a Stroke Who Have Not Successfully Returned to Work: A Qualitative Study","authors":"Ziwei Liu, Shu Liu, Jiaxing Shi, Yanming Yang, Yuan Zhong, Jiaxin Li","doi":"10.1111/hex.70150","DOIUrl":"10.1111/hex.70150","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Objectives</h3>\u0000 \u0000 <p>The study aims to understand the return to work (RTW) needs of young and middle-aged people who have experienced a stroke and to contribute to the development of supportive RTW services.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Design</h3>\u0000 \u0000 <p>A qualitative study employing the phenomenological method.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Participants</h3>\u0000 \u0000 <p>Eleven young and middle-aged people who have experienced a stroke participated in the study.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Semi-structured in-depth interviews were conducted and analysed using Colaizzi's 7-step method to identify and categorize the RTW needs of participants.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The analysis delineated four overarching thematic categories of RTW needs among the participants: self-management needs, emphasizing the regulation of symptoms, health maintenance and recovery planning; social support needs, highlighting the significance of workplace accommodations, professional medical guidance, and emotional encouragement from companions and family; the need for information related to returning to work, which includes accessing resources on rehabilitation opportunities, labour rights and professional consultation services; and personal development needs, focusing on fostering self-worth, identifying growth opportunities and acquiring new skills to adapt to changing professional demands.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>The diverse and comprehensive needs of young and middle-aged people who have experienced a stroke underscore the importance of multifaceted support from healthcare professionals. This support should encompass medical, psychological, informational and skill-development aspects and should involve enhanced communication and collaboration with relevant stakeholders to facilitate a successful RTW.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>This study was designed without direct involvement from patients or the public in the development of the research question, the design of the study, or the conduct of the research. This decision was informed by the specific focus on qualitative experiences and perceptions of stroke survivors regarding their RTW journey, which relied heav","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 1","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-01-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11733740/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143056145","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}
Clarissa Giebel, James Watson, Megan Polden, Megan Readman, Hilary Tetlow, Mark Gabbay
<div> <section> <h3> Background</h3> <p>To deliver implementable, meaningful research and advance knowledge, different stakeholders need to be brought together regularly via a suitable platform or community of practice. The Liverpool Dementia & Ageing Research Forum, set up in 2019, is a public/professional community of practice, providing in-person and remote events and activities to connect people living with dementia, unpaid carers, health and social care professionals, Third Sector representatives and commissioners. The aim of this study was to qualitatively explore the experiences and impacts of engaging with Forum events by different stakeholders.</p> </section> <section> <h3> Methods</h3> <p>Attendees of any Forum events were eligible to take part. We conducted remote semi-structured interviews about the experiences and impacts of engaging with the Forum between November 2023 and April 2024. Anonymised transcripts were coded by three research team members, including a trained public advisor (unpaid carer), using inductive thematic analysis.</p> </section> <section> <h3> Results</h3> <p>Seventeen attendees participated in the study. These included people living with dementia, unpaid carers, Third Sector representatives, academics and health and social care providers. Four overarching themes were identified in the data: facilitated networking within and outside of personal expertise, improved knowledge and capacity, empowerment by having one's voice heard and diversity in stakeholders but not the background. The Forum events were utilised on a drop- in and -out basis for most attendees, often picking events that were of immediate interest to them, whilst some attended almost all events. Engaging with the Forum was found to strongly facilitate increased networking and building relationships, especially outside of stakeholder background, whilst diversity in backgrounds of attendees, such as ethnic diversity, was lacking.</p> </section> <section> <h3> Conclusions</h3> <p>This Community of Practice has successfully brought together diverse stakeholders to network and expand their relationships, and increased knowledge and capacity in different stakeholder groups. Whilst the Forum was considered inclusive, future outreach work needs to ensure that greater diversity in backgrounds and personal experiences is reflected in attendees, and that a continuous flow of new attendees joins.</p> </section> <section> <h3> Patient and Public Involvement</h3>
{"title":"Engaging With a Community of Practice in Dementia: Impacts on Skills, Knowledge, Networks and Accessing Support","authors":"Clarissa Giebel, James Watson, Megan Polden, Megan Readman, Hilary Tetlow, Mark Gabbay","doi":"10.1111/hex.70154","DOIUrl":"10.1111/hex.70154","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>To deliver implementable, meaningful research and advance knowledge, different stakeholders need to be brought together regularly via a suitable platform or community of practice. The Liverpool Dementia & Ageing Research Forum, set up in 2019, is a public/professional community of practice, providing in-person and remote events and activities to connect people living with dementia, unpaid carers, health and social care professionals, Third Sector representatives and commissioners. The aim of this study was to qualitatively explore the experiences and impacts of engaging with Forum events by different stakeholders.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Attendees of any Forum events were eligible to take part. We conducted remote semi-structured interviews about the experiences and impacts of engaging with the Forum between November 2023 and April 2024. Anonymised transcripts were coded by three research team members, including a trained public advisor (unpaid carer), using inductive thematic analysis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Seventeen attendees participated in the study. These included people living with dementia, unpaid carers, Third Sector representatives, academics and health and social care providers. Four overarching themes were identified in the data: facilitated networking within and outside of personal expertise, improved knowledge and capacity, empowerment by having one's voice heard and diversity in stakeholders but not the background. The Forum events were utilised on a drop- in and -out basis for most attendees, often picking events that were of immediate interest to them, whilst some attended almost all events. Engaging with the Forum was found to strongly facilitate increased networking and building relationships, especially outside of stakeholder background, whilst diversity in backgrounds of attendees, such as ethnic diversity, was lacking.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>This Community of Practice has successfully brought together diverse stakeholders to network and expand their relationships, and increased knowledge and capacity in different stakeholder groups. Whilst the Forum was considered inclusive, future outreach work needs to ensure that greater diversity in backgrounds and personal experiences is reflected in attendees, and that a continuous flow of new attendees joins.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient and Public Involvement</h3>\u0000 \u0000 ","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 1","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-01-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11735733/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143016883","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}
Nicole Bizzotto, Gert-Jan de Bruijn, Peter Johannes Schulz
Objectives
Grounded in the Health Empowerment Model, which posits that health literacy and patient empowerment are intertwined yet distinct constructs, this study investigates how the interplay of these factors influences attitudes toward seeking professional psychological help in members of online communities for mental health (OCMHs). This while acknowledging the multidimensionality of patient empowerment, encompassing meaningfulness, competence, self-determination, and impact.
Design and Methods
A cluster analysis of data gathered from 269 members of Italian-speaking OCMHs on Facebook has been performed.
Results
Four profiles have been identified: dangerous self-managers (11.2%), effective self-managers (21.2%), disempowered (40.5%) and ambivalent empowered (27.1%). Clusters provided meaningful variations in help-seeking attitudes, also when controlling for depression and anxiety severity, F3, 265 = 11.910, p < 0.001.
Conclusions
The findings provided further evidence of the multidimensionality of patient empowerment. Considering the results, we discussed potential interventions aimed at enhancing the quality of OCMHs, tailoring to the unique characteristics of each cluster.
Patient or Public Contribution
Administrators and moderators of mental health Facebook communities—whether expert-led by mental health professionals or peers—played a key role in this study. They provided valuable insights during the questionnaire design process to ensure the questions were both relevant and appropriate for community members. These administrators and moderators also actively facilitated participant recruitment by creating and sharing posts, either video- or text-based, on community homepages. Furthermore, after completing the questionnaire, participants were encouraged to comment on the Facebook posts where the survey link was shared, mentioning that they participated and inviting other members to take part. This approach aimed to foster a sense of involvement and further promoted the survey within the community.
{"title":"Clusters of Patient Empowerment and Mental Health Literacy Differentiate Professional Help-Seeking Attitudes in Online Mental Health Communities Users","authors":"Nicole Bizzotto, Gert-Jan de Bruijn, Peter Johannes Schulz","doi":"10.1111/hex.70153","DOIUrl":"10.1111/hex.70153","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Objectives</h3>\u0000 \u0000 <p>Grounded in the Health Empowerment Model, which posits that health literacy and patient empowerment are intertwined yet distinct constructs, this study investigates how the interplay of these factors influences attitudes toward seeking professional psychological help in members of online communities for mental health (OCMHs). This while acknowledging the multidimensionality of patient empowerment, encompassing meaningfulness, competence, self-determination, and impact.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Design and Methods</h3>\u0000 \u0000 <p>A cluster analysis of data gathered from 269 members of Italian-speaking OCMHs on Facebook has been performed.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Four profiles have been identified: dangerous self-managers (11.2%), effective self-managers (21.2%), disempowered (40.5%) and ambivalent empowered (27.1%). Clusters provided meaningful variations in help-seeking attitudes, also when controlling for depression and anxiety severity, <i>F</i><sub>3, 265</sub> = 11.910, <i>p</i> < 0.001.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The findings provided further evidence of the multidimensionality of patient empowerment. Considering the results, we discussed potential interventions aimed at enhancing the quality of OCMHs, tailoring to the unique characteristics of each cluster.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>Administrators and moderators of mental health Facebook communities—whether expert-led by mental health professionals or peers—played a key role in this study. They provided valuable insights during the questionnaire design process to ensure the questions were both relevant and appropriate for community members. These administrators and moderators also actively facilitated participant recruitment by creating and sharing posts, either video- or text-based, on community homepages. Furthermore, after completing the questionnaire, participants were encouraged to comment on the Facebook posts where the survey link was shared, mentioning that they participated and inviting other members to take part. This approach aimed to foster a sense of involvement and further promoted the survey within the community.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 1","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-01-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11735741/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143016874","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}
Catherine L. Johnson, Claire M. Kelly, Anthony F. Jorm, William Garvey, Laura M. Hart
Background
Adults who live or work with children are an important source of support and are gateways to professional help when a child is experiencing a mental health problem. This study aimed to develop consensus-based guidelines on how adults such as parents, educators or health professionals should approach a child aged 5–12 years to discuss concerns about the child's mental health and seek help.
Methods
A Delphi consensus method with three rounds was used. Experts were recruited from six countries to form three panels: health professionals, educators and people with lived experience (parents and carers, and young people with mental health problems). Statements to be rated were sourced from an online search of websites designed for adults who live or work with children. Further suggestions for statements came from panellists. Statements that reached 80% consensus across all panels were included in the guidelines.
Results
132 participants completed the Round 1 survey, reducing to 54 by Round 3. A total of 248 statements were presented to panel members, with 151 being endorsed and included in the guidelines.
Conclusions
These guidelines represent the first recommendations developed for members of the public providing mental health first aid to children aged 5–12 years.
Patient or Public Contribution
Lived experience advocates (i.e. those with lived experience of a mental health problem in childhood and/or caregiving experience of raising a child with a mental health problem) were involved at two stages of this research: As part of the Advisory Group for the project and as expert panel members. Advisory Group members provided input into the conduct of the study and the content and design of the research outputs. Panel members provided their expertise to review every item to be included in the guidelines, proposed new items to be included, and reviewed and approved the finalised output documents.
{"title":"How to Approach a Child About Concerns for Their Mental Health and Seeking Help: A Delphi Expert Consensus Study to Develop Guidelines on Mental Health First Aid for Supporting Children","authors":"Catherine L. Johnson, Claire M. Kelly, Anthony F. Jorm, William Garvey, Laura M. Hart","doi":"10.1111/hex.70126","DOIUrl":"10.1111/hex.70126","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Adults who live or work with children are an important source of support and are gateways to professional help when a child is experiencing a mental health problem. This study aimed to develop consensus-based guidelines on how adults such as parents, educators or health professionals should approach a child aged 5–12 years to discuss concerns about the child's mental health and seek help.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A Delphi consensus method with three rounds was used. Experts were recruited from six countries to form three panels: health professionals, educators and people with lived experience (parents and carers, and young people with mental health problems). Statements to be rated were sourced from an online search of websites designed for adults who live or work with children. Further suggestions for statements came from panellists. Statements that reached 80% consensus across all panels were included in the guidelines.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>132 participants completed the Round 1 survey, reducing to 54 by Round 3. A total of 248 statements were presented to panel members, with 151 being endorsed and included in the guidelines.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>These guidelines represent the first recommendations developed for members of the public providing mental health first aid to children aged 5–12 years.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>Lived experience advocates (i.e. those with lived experience of a mental health problem in childhood and/or caregiving experience of raising a child with a mental health problem) were involved at two stages of this research: As part of the Advisory Group for the project and as expert panel members. Advisory Group members provided input into the conduct of the study and the content and design of the research outputs. Panel members provided their expertise to review every item to be included in the guidelines, proposed new items to be included, and reviewed and approved the finalised output documents.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 1","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-01-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11729744/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142980800","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}
Anne Killett, Kerry Micklewright, Rachael Carroll, Gizdem Akdur, Emily Allinson, Liz Crellin, Kaat de Corte, Margaret Fox, Barbara Hanratty, Lisa Irvine, Liz Jones, Marlene Kelly, Therese Lloyd, Julienne Meyer, Karen Spilsbury, Ann-Marie Towers, Freya Tracey, John Willmott, Claire Goodman
<div> <section> <h3> Introduction</h3> <p>Information on care home residents in England is captured in numerous data sets (care home records, General Practitioner records, community nursing, etc.) but little of this information is currently analysed in a way that is useful for care providers, current or future residents and families or that realises the potential of data to enhance care provision. The DACHA study aimed to develop and test a minimum data set (MDS) which would bring together data that is useful to support and improve care and facilitate research. It is that utility that underscores the importance of meaningful public involvement (PI) with the range of groups of people affected. This paper analyses the involvement of family members of care home residents and care home staff through a PI Panel.</p> </section> <section> <h3> Objectives</h3> <p>The objective for the PI activities was to consistently bring the knowledge and perspectives of family members and care home staff to influence the ongoing design and conduct of the DACHA study.</p> </section> <section> <h3> Methods</h3> <p>The bespoke methods of PI included a dedicated PI team and a PI Panel of public contributors. Meetings were recorded and minutes agreed, resulting actions were tracked and reflections on the PI recorded. A democratic, social relations approach was used to frame the analysis.</p> </section> <section> <h3> Results</h3> <p>A PI panel met 17 times. All meetings included both family members and care home staff. Analysis of the records and reflections developed the following themes about the operation of the PI: deepened understanding of the data environment in care homes; Influence on the pilot MDS; aiming for best research practices with care homes; personal/professional development for PI members; expectations of the project. Learning points for future research projects are developed.</p> </section> <section> <h3> Conclusions</h3> <p>PI shaped the design and conduct of the DACHA study, grounding it in the needs and perspectives of people using and providing social care. Data research has a huge responsibility to accurately incorporate relevant public perspectives. There is an implicit assumption that records and data are objective and ‘speak for themselves’ however there can be unintended consequences from introduction of new data requirements in practice.</p> </section> <section> <h3> Patient
{"title":"Public Involvement to Enhance Care Home Research; Collaboration on a Minimum Data Set for Care Homes","authors":"Anne Killett, Kerry Micklewright, Rachael Carroll, Gizdem Akdur, Emily Allinson, Liz Crellin, Kaat de Corte, Margaret Fox, Barbara Hanratty, Lisa Irvine, Liz Jones, Marlene Kelly, Therese Lloyd, Julienne Meyer, Karen Spilsbury, Ann-Marie Towers, Freya Tracey, John Willmott, Claire Goodman","doi":"10.1111/hex.70140","DOIUrl":"10.1111/hex.70140","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Information on care home residents in England is captured in numerous data sets (care home records, General Practitioner records, community nursing, etc.) but little of this information is currently analysed in a way that is useful for care providers, current or future residents and families or that realises the potential of data to enhance care provision. The DACHA study aimed to develop and test a minimum data set (MDS) which would bring together data that is useful to support and improve care and facilitate research. It is that utility that underscores the importance of meaningful public involvement (PI) with the range of groups of people affected. This paper analyses the involvement of family members of care home residents and care home staff through a PI Panel.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Objectives</h3>\u0000 \u0000 <p>The objective for the PI activities was to consistently bring the knowledge and perspectives of family members and care home staff to influence the ongoing design and conduct of the DACHA study.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>The bespoke methods of PI included a dedicated PI team and a PI Panel of public contributors. Meetings were recorded and minutes agreed, resulting actions were tracked and reflections on the PI recorded. A democratic, social relations approach was used to frame the analysis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>A PI panel met 17 times. All meetings included both family members and care home staff. Analysis of the records and reflections developed the following themes about the operation of the PI: deepened understanding of the data environment in care homes; Influence on the pilot MDS; aiming for best research practices with care homes; personal/professional development for PI members; expectations of the project. Learning points for future research projects are developed.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>PI shaped the design and conduct of the DACHA study, grounding it in the needs and perspectives of people using and providing social care. Data research has a huge responsibility to accurately incorporate relevant public perspectives. There is an implicit assumption that records and data are objective and ‘speak for themselves’ however there can be unintended consequences from introduction of new data requirements in practice.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient ","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 1","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-01-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11729378/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142980801","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}
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