Adam Sutherland, Denham L. Phipps, Stephen Tomlin, Suzanne Grant, Joanne Hughes, Joanna Chambers, Susan Kafka, Heidi Ridgewell, Darren M. Ashcroft
<div> <section> <h3> Introduction</h3> <p>Medication safety in healthcare settings is a persistent problem, and children may be at greater risk of harm than adults. Most existing research examining medication safety for hospitalised children is from the perspective of healthcare professionals and organisations. This study aimed to ethnographically explore parent and staff perspectives on the role of parents in medication safety in the paediatric hospital setting.</p> </section> <section> <h3> Methods</h3> <p>230 h of ethnographic observation and 19 semi-structured interviews with clinical staff and parents were conducted over paediatric wards in three acute hospitals in Northern England between October 2020 and May 2022. Data was organised and coded using NVivo and analysed thematically.</p> </section> <section> <h3> Results</h3> <p>Three main themes were identified: (1) Capacity and Capability: Parents were often assumed to be incompetent by organisational policies and managers but at the same time were co-opted to undertake medication processes to meet operational needs. Parental experience was often ignored or judged negatively. When things went wrong parents were sometimes blamed. (2) Communication: parents were seldom meaningfully involved in decisions about their children's medication or provided with appropriate information unless requested. Parental medication histories were treated with suspicion and validated against inaccurate records. (3) Agency and Autonomy: parents often wanted to participate in their child's care but were expected to be passive observers.</p> </section> <section> <h3> Conclusions</h3> <p>Medication safety for children is a social phenomenon involving healthcare professionals and parents. However, parents are often relegated to a passive role by healthcare staff. We posit that this represents an example of epistemic injustice in the way parents are assumed to be incompetent outsiders with no understanding of the medical care of their children, despite them offering resilience for medicines safety. We recommend further exploration of how parents contribute to resilience and safety for children in hospital and the barriers to this, and how health services can safely support increased engagement and involvement of parents in the care of their children while in hospital.</p> </section> <section> <h3> Patient or Public Contribution</h3> <p>Parents contributed to the analysis and interpretation of the data collection and ha
{"title":"‘They Take the Mum Off You When You Come In’: An Ethnographic Study of Parent Experiences of Medicines Safety Systems in English Hospitals","authors":"Adam Sutherland, Denham L. Phipps, Stephen Tomlin, Suzanne Grant, Joanne Hughes, Joanna Chambers, Susan Kafka, Heidi Ridgewell, Darren M. Ashcroft","doi":"10.1111/hex.70161","DOIUrl":"https://doi.org/10.1111/hex.70161","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Medication safety in healthcare settings is a persistent problem, and children may be at greater risk of harm than adults. Most existing research examining medication safety for hospitalised children is from the perspective of healthcare professionals and organisations. This study aimed to ethnographically explore parent and staff perspectives on the role of parents in medication safety in the paediatric hospital setting.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>230 h of ethnographic observation and 19 semi-structured interviews with clinical staff and parents were conducted over paediatric wards in three acute hospitals in Northern England between October 2020 and May 2022. Data was organised and coded using NVivo and analysed thematically.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Three main themes were identified: (1) Capacity and Capability: Parents were often assumed to be incompetent by organisational policies and managers but at the same time were co-opted to undertake medication processes to meet operational needs. Parental experience was often ignored or judged negatively. When things went wrong parents were sometimes blamed. (2) Communication: parents were seldom meaningfully involved in decisions about their children's medication or provided with appropriate information unless requested. Parental medication histories were treated with suspicion and validated against inaccurate records. (3) Agency and Autonomy: parents often wanted to participate in their child's care but were expected to be passive observers.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Medication safety for children is a social phenomenon involving healthcare professionals and parents. However, parents are often relegated to a passive role by healthcare staff. We posit that this represents an example of epistemic injustice in the way parents are assumed to be incompetent outsiders with no understanding of the medical care of their children, despite them offering resilience for medicines safety. We recommend further exploration of how parents contribute to resilience and safety for children in hospital and the barriers to this, and how health services can safely support increased engagement and involvement of parents in the care of their children while in hospital.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>Parents contributed to the analysis and interpretation of the data collection and ha","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 1","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-02-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70161","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143380416","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}
Rosalind Adam, Lisa Duncan, Sara MacLennan, Louise Locock, Anne E. Kiltie, Leslie Samuel, Peter Murchie
<div> <section> <h3> Introduction</h3> <p>An increasing number of people are living beyond cancer with unmet health needs. The aim of this study was to co-design a digital intervention to improve health outcomes for people who have completed potentially curative treatment for cancer.</p> </section> <section> <h3> Methods</h3> <p>Two co-design workshops were held with patients, clinicians (including oncologists, general practitioners and nurses), digital/computing science experts and third-sector representatives. At workshop one, problems and gaps in care were identified and intervention ideas were generated. At workshop two, a prototype intervention was discussed and refined.</p> </section> <section> <h3> Results</h3> <p>The workshops were attended by 43 people in total: 26 at event one and 23 at event two (six attended both events). Patients valued relationship-based care and felt supported during hospital treatment. Patients ‘fell off a cliff’ after discharge, and there was consensus that more could be done in primary care to support those living beyond cancer. It was proposed that cancer reviews could be integrated into UK primary care chronic disease management activities. A digital form, the ‘Structured Personalised Assessment for Reviews after Cancer’ (SPARC) tool, was developed to support asynchronous consultations that would cover the breadth of problems and health promotion activities required for high-quality primary care for cancer. SPARC could also identify those without problems who do not require review.</p> </section> <section> <h3> Conclusion</h3> <p>SPARC has been co-designed to support brief but comprehensive cancer review consultations between primary care clinicians and their patients. SPARC aligns with best practice guidelines. The next step is to evaluate SPARC with patients and in general practices.</p> </section> <section> <h3> Patient and Public Contribution</h3> <p>Patient and stakeholder engagement was at the centre of this research study. Cancer organisations such as ‘CLAN’ cancer support, Prostate Cancer Scotland and Cancer Research UK helped us to engage with patients. The Aberdeen University Institute of Applied Health Science Patient Public Involvement group were also instrumental in sense-checking and improving the materials for the second workshop. We plan to involve our patient and carer partners in designing the next stages of our research (including study materials, processes and methods) so that they will be at
{"title":"Co-Design of the Structured Personalised Assessment for Reviews After Cancer (SPARC) Intervention","authors":"Rosalind Adam, Lisa Duncan, Sara MacLennan, Louise Locock, Anne E. Kiltie, Leslie Samuel, Peter Murchie","doi":"10.1111/hex.70174","DOIUrl":"https://doi.org/10.1111/hex.70174","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>An increasing number of people are living beyond cancer with unmet health needs. The aim of this study was to co-design a digital intervention to improve health outcomes for people who have completed potentially curative treatment for cancer.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Two co-design workshops were held with patients, clinicians (including oncologists, general practitioners and nurses), digital/computing science experts and third-sector representatives. At workshop one, problems and gaps in care were identified and intervention ideas were generated. At workshop two, a prototype intervention was discussed and refined.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The workshops were attended by 43 people in total: 26 at event one and 23 at event two (six attended both events). Patients valued relationship-based care and felt supported during hospital treatment. Patients ‘fell off a cliff’ after discharge, and there was consensus that more could be done in primary care to support those living beyond cancer. It was proposed that cancer reviews could be integrated into UK primary care chronic disease management activities. A digital form, the ‘Structured Personalised Assessment for Reviews after Cancer’ (SPARC) tool, was developed to support asynchronous consultations that would cover the breadth of problems and health promotion activities required for high-quality primary care for cancer. SPARC could also identify those without problems who do not require review.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>SPARC has been co-designed to support brief but comprehensive cancer review consultations between primary care clinicians and their patients. SPARC aligns with best practice guidelines. The next step is to evaluate SPARC with patients and in general practices.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient and Public Contribution</h3>\u0000 \u0000 <p>Patient and stakeholder engagement was at the centre of this research study. Cancer organisations such as ‘CLAN’ cancer support, Prostate Cancer Scotland and Cancer Research UK helped us to engage with patients. The Aberdeen University Institute of Applied Health Science Patient Public Involvement group were also instrumental in sense-checking and improving the materials for the second workshop. We plan to involve our patient and carer partners in designing the next stages of our research (including study materials, processes and methods) so that they will be at","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 1","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-02-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70174","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143362288","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}
<div> <section> <h3> Introduction</h3> <p>Considerable changes in primary outpatient healthcare can be expected in the coming years due to various trends observed in Western countries, such as an ageing population, an increasing number of patients with chronic illnesses, GP shortages, a trend towards patient-centred care and the digitalization of healthcare. Knowing the population's preferences and subgroup preferences in these developments helps policymakers make healthcare delivery more responsive to patients' needs.</p> </section> <section> <h3> Methods</h3> <p>Primary data were collected using a representative sample of the adult Swiss population in the fall of 2020. Discrete Choice Experiments (DCEs) were conducted, where one of the DCEs included an acute health problem and another a routine examination. In the survey, respondents were shown five different choice tasks, each containing two hypothetical alternatives for primary outpatient healthcare models. They were asked to choose their preferred alternative for each choice task. The DCEs enabled the measurement of the population's preferences for nine attributes of primary outpatient healthcare that are currently under discussion (e.g., task shifting, new technology in healthcare and shared decision-making). The data were analysed using panel latent class logit models (LCA) to determine preference heterogeneity and relative importance scores for the attributes.</p> </section> <section> <h3> Results</h3> <p>Data from 4745 respondents were included in the analysis. The LCA indicated two classes for acute health problem and three classes for routine examination, with varying latent preference structures. Both DCEs showed similar preference patterns: for one class with younger and more educated respondents, health insurance premium development was most important, followed by participation in decision-making, whereas having a doctor as the health professional was less important. Another class with older and less educated people attached more importance to personal continuity of care and the health professionals being a medical doctor.</p> </section> <section> <h3> Conclusion</h3> <p>Younger and more highly educated people are more open to current developments in outpatient primary healthcare, such as task shifting, than older and less educated people, especially if this reduces their health insurance premiums in return.</p> </section> <section> <h3> Patient or Public Contribution</h3> <p>The publ
{"title":"Task Shifting, eHealth and Shared Decision-Making—Preference Heterogeneity in the Adult Population for Developments in Outpatient Primary Healthcare","authors":"Zora Föhn","doi":"10.1111/hex.70060","DOIUrl":"10.1111/hex.70060","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Considerable changes in primary outpatient healthcare can be expected in the coming years due to various trends observed in Western countries, such as an ageing population, an increasing number of patients with chronic illnesses, GP shortages, a trend towards patient-centred care and the digitalization of healthcare. Knowing the population's preferences and subgroup preferences in these developments helps policymakers make healthcare delivery more responsive to patients' needs.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Primary data were collected using a representative sample of the adult Swiss population in the fall of 2020. Discrete Choice Experiments (DCEs) were conducted, where one of the DCEs included an acute health problem and another a routine examination. In the survey, respondents were shown five different choice tasks, each containing two hypothetical alternatives for primary outpatient healthcare models. They were asked to choose their preferred alternative for each choice task. The DCEs enabled the measurement of the population's preferences for nine attributes of primary outpatient healthcare that are currently under discussion (e.g., task shifting, new technology in healthcare and shared decision-making). The data were analysed using panel latent class logit models (LCA) to determine preference heterogeneity and relative importance scores for the attributes.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Data from 4745 respondents were included in the analysis. The LCA indicated two classes for acute health problem and three classes for routine examination, with varying latent preference structures. Both DCEs showed similar preference patterns: for one class with younger and more educated respondents, health insurance premium development was most important, followed by participation in decision-making, whereas having a doctor as the health professional was less important. Another class with older and less educated people attached more importance to personal continuity of care and the health professionals being a medical doctor.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Younger and more highly educated people are more open to current developments in outpatient primary healthcare, such as task shifting, than older and less educated people, especially if this reduces their health insurance premiums in return.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>The publ","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 1","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-02-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70060","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143191178","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}
Dristy Gurung, Bhawana Subedi, Binita Acharya, Mani Neupane, Brandon A. Kohrt, Graham Thornicroft, Petra C. Gronholm
<div> <section> <h3> Introduction</h3> <p>Mental health-related structural stigma is a multifaceted issue that significantly impacts access to quality mental healthcare, particularly in low-resource settings like Nepal. Therefore, there is a clear need to understand the complexities and identify gaps for targeted interventions through evaluations of various dimensions of structural stigma within healthcare systems. This study aimed to assess the feasibility and applicability of a mental health-related structural stigma measurement framework through its implementation in Nepal's healthcare system.</p> </section> <section> <h3> Methods</h3> <p>A mixed-methods approach was employed, involving data mapping, key informant interviews and rating exercises with diverse stakeholders, including policymakers, health workers and people with lived experience (PWLEs). A visual analogue scale or Red/Amber/Green (RAG) rating scale was used to rate each indicator within the framework for the level of structural stigma based on the mapped information and their experiences. Data collection was carried out from May to June 2024.</p> </section> <section> <h3> Results</h3> <p>Twenty key informants were interviewed for this exercise. Most indicators within the framework were endorsed as yellow, followed by red by participants referring to mid to high levels of structural stigma within the healthcare system. The findings also revealed that the stakeholders perceived the framework as acceptable and applicable for measuring mental health-related structural stigma in the healthcare system. However, challenges were noted regarding the clarity of some indicators, limitations of the three-coloured visual analogue rating and the need for comparator conditions.</p> </section> <section> <h3> Conclusion</h3> <p>The study underscores the measurement framework's value as a tool for identifying and addressing structural stigma in a mental healthcare system in a low-resource setting. Stakeholder engagement and contextual adaptation are crucial for its successful implementation. The insights gained can inform structural reforms and improve mental health service delivery, ultimately promoting greater equity and access for PWLEs.</p> </section> <section> <h3> Patient Public Contribution</h3> <p>This framework being assessed in this study (FOCUS-MHS) was developed through extensive consultation with People with Lived Experiences (PWLEs) in Nepal and globally with the Global Mental Health P
{"title":"Feasibility and Applicability of Implementing the Framework for Comprehensive Understanding of Structural Stigma in Mental Healthcare Systems: A Case Example of Nepal","authors":"Dristy Gurung, Bhawana Subedi, Binita Acharya, Mani Neupane, Brandon A. Kohrt, Graham Thornicroft, Petra C. Gronholm","doi":"10.1111/hex.70170","DOIUrl":"https://doi.org/10.1111/hex.70170","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Mental health-related structural stigma is a multifaceted issue that significantly impacts access to quality mental healthcare, particularly in low-resource settings like Nepal. Therefore, there is a clear need to understand the complexities and identify gaps for targeted interventions through evaluations of various dimensions of structural stigma within healthcare systems. This study aimed to assess the feasibility and applicability of a mental health-related structural stigma measurement framework through its implementation in Nepal's healthcare system.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A mixed-methods approach was employed, involving data mapping, key informant interviews and rating exercises with diverse stakeholders, including policymakers, health workers and people with lived experience (PWLEs). A visual analogue scale or Red/Amber/Green (RAG) rating scale was used to rate each indicator within the framework for the level of structural stigma based on the mapped information and their experiences. Data collection was carried out from May to June 2024.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Twenty key informants were interviewed for this exercise. Most indicators within the framework were endorsed as yellow, followed by red by participants referring to mid to high levels of structural stigma within the healthcare system. The findings also revealed that the stakeholders perceived the framework as acceptable and applicable for measuring mental health-related structural stigma in the healthcare system. However, challenges were noted regarding the clarity of some indicators, limitations of the three-coloured visual analogue rating and the need for comparator conditions.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>The study underscores the measurement framework's value as a tool for identifying and addressing structural stigma in a mental healthcare system in a low-resource setting. Stakeholder engagement and contextual adaptation are crucial for its successful implementation. The insights gained can inform structural reforms and improve mental health service delivery, ultimately promoting greater equity and access for PWLEs.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient Public Contribution</h3>\u0000 \u0000 <p>This framework being assessed in this study (FOCUS-MHS) was developed through extensive consultation with People with Lived Experiences (PWLEs) in Nepal and globally with the Global Mental Health P","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 1","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-02-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70170","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143248636","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}
Jamie Boisvenue, Youssef A. Elezzabi, Kim Young, Kathleen Gibson, Heather Hinz, Reid McClure, Robyn Homulos, Jude Spiers, Peter Senior, Roseanne Yeung
Introduction
User experience design aims to create products and services that are accessible, usable, and enjoyable. The Reshape T1D study aims to apply these principles to understand how individuals living with T1D interact with and experience healthcare to inform T1D clinical quality improvement.
Methods
Using a community-based participatory research design, we involved four patients and four clinicians as co-researchers throughout the research. A questionnaire and virtual semi-structured interview were applied across a purposeful sample of 41 adults living with T1D across Alberta, Canada, between September 2021 and May 2022. Audio recordings were transcribed verbatim and de-identified before coding. Thematic analysis was conducted on coded participant discourse through multiple coders.
Results
Participants indicated the need for a centralized hub that provides consistent, reliable, and up-to-date T1D education and resources and an emphasis on access to mental health resources within T1D care settings. Providing greater flexibility for appointment types (ie. in-person, virtual, etc.) and after-hours access contributed to better self-management and prevented emergency room visits. Participants desired a choice as to who comprises their T1D care team and for teams to address patient needs specific to their reality. We identified that medical trauma had long-term impacts on perceptions of healthcare and contributed to a reluctance to seek future care. Women expressed challenges in discussing reproductive health with their clinicians. Diabetes online communities provide an adjunct to clinical care through peer support. Cost and access to the latest technology are ongoing barriers for many participants, especially concerning publicly funded programmes that use advanced insulin pump therapy, continuous glucose monitoring, and automated insulin delivery systems. A quality improvement framework emerged through data analysis, and findings were synthesized into actionable recommendations for ongoing clinical quality improvement.
Conclusion
Our findings highlight how important health system user suggestions are for more equitable, accessible, and empathetic healthcare for individuals living with T1D. Further work is needed to explore health system user experiences with clinicians and healthcare administrators to effectively carry out T1D clinical quality improvement.
{"title":"Developing a Quality Improvement Framework to Enhance the Health System User Experience for Individuals Living With Type 1 Diabetes: The Reshape T1D Study","authors":"Jamie Boisvenue, Youssef A. Elezzabi, Kim Young, Kathleen Gibson, Heather Hinz, Reid McClure, Robyn Homulos, Jude Spiers, Peter Senior, Roseanne Yeung","doi":"10.1111/hex.70172","DOIUrl":"https://doi.org/10.1111/hex.70172","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>User experience design aims to create products and services that are accessible, usable, and enjoyable. The Reshape T1D study aims to apply these principles to understand how individuals living with T1D interact with and experience healthcare to inform T1D clinical quality improvement.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Using a community-based participatory research design, we involved four patients and four clinicians as co-researchers throughout the research. A questionnaire and virtual semi-structured interview were applied across a purposeful sample of 41 adults living with T1D across Alberta, Canada, between September 2021 and May 2022. Audio recordings were transcribed verbatim and de-identified before coding. Thematic analysis was conducted on coded participant discourse through multiple coders.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Participants indicated the need for a centralized hub that provides consistent, reliable, and up-to-date T1D education and resources and an emphasis on access to mental health resources within T1D care settings. Providing greater flexibility for appointment types (ie. in-person, virtual, etc.) and after-hours access contributed to better self-management and prevented emergency room visits. Participants desired a choice as to who comprises their T1D care team and for teams to address patient needs specific to their reality. We identified that medical trauma had long-term impacts on perceptions of healthcare and contributed to a reluctance to seek future care. Women expressed challenges in discussing reproductive health with their clinicians. Diabetes online communities provide an adjunct to clinical care through peer support. Cost and access to the latest technology are ongoing barriers for many participants, especially concerning publicly funded programmes that use advanced insulin pump therapy, continuous glucose monitoring, and automated insulin delivery systems. A quality improvement framework emerged through data analysis, and findings were synthesized into actionable recommendations for ongoing clinical quality improvement.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Our findings highlight how important health system user suggestions are for more equitable, accessible, and empathetic healthcare for individuals living with T1D. Further work is needed to explore health system user experiences with clinicians and healthcare administrators to effectively carry out T1D clinical quality improvement.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 1","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-02-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70172","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143248407","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}
Coralie Wales, Penny Abbott, Jackie Street, Lauren Fawcett, Maree Jennings, Wendy Sharp, Philip Lee
<div> <section> <h3> Introduction</h3> <p>Publicly funded regional primary health care investments are usually informed by analysis of locally collected data, surveys, focus groups and consultations. We wanted a deeper understanding of baseline health and social care priorities in culturally diverse Western Sydney. If WentWest could understand the priorities, the operational agenda for commissioning services could be tailored around them. This research describes the organisation, conduct and recommendations of a citizens' jury in 2023.</p> </section> <section> <h3> Methods</h3> <p>Thematic analysis of the transcribed facilitated discussions identified the well-informed priorities of a diverse and representative group of Western Sydney citizens. Listening to internal and external advisory groups delivered communication pathways, expert presenters, handbook preparation and practical support for the jury event. Consistent with the principle that research about the community should include the community, four consumer advisors were colleagues in the research team.</p> </section> <section> <h3> Results</h3> <p>The jury supported a focus on prevention, including early intervention to keep children thriving and connected at school, and better cross-sectoral bonds via coalitions to enable social care to be linked to health care. Team-based care in general practice for proactive data use and building a culture for relationship-based care, developing a patient-centred workforce through incentivising students and expediting registration of overseas trained health workers were recommended. Assets-based community development was seen as an essential approach in linking the community with these recommendations.</p> </section> <section> <h3> Conclusion</h3> <p>The use of citizens' juries in primary health settings is rare. In this culturally diverse community, WentWest now has a foundational understanding of what investments will deliver and has committed to institutionalising this deliberative approach into a permanent citizens assembly.</p> </section> <section> <h3> Patient and Public Contribution</h3> <p>The design of the jury was guided by several advisory groups across the local region. The research team included four consumer advisors to provide overarching feedback and external insights. The jurors were selected to be representative of the regional community. They developed the recommendations reported in this article.</p> </section>
{"title":"Setting Primary Health and Social Care Priorities Using a Deliberative Democratic Participatory Approach","authors":"Coralie Wales, Penny Abbott, Jackie Street, Lauren Fawcett, Maree Jennings, Wendy Sharp, Philip Lee","doi":"10.1111/hex.70173","DOIUrl":"https://doi.org/10.1111/hex.70173","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Publicly funded regional primary health care investments are usually informed by analysis of locally collected data, surveys, focus groups and consultations. We wanted a deeper understanding of baseline health and social care priorities in culturally diverse Western Sydney. If WentWest could understand the priorities, the operational agenda for commissioning services could be tailored around them. This research describes the organisation, conduct and recommendations of a citizens' jury in 2023.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Thematic analysis of the transcribed facilitated discussions identified the well-informed priorities of a diverse and representative group of Western Sydney citizens. Listening to internal and external advisory groups delivered communication pathways, expert presenters, handbook preparation and practical support for the jury event. Consistent with the principle that research about the community should include the community, four consumer advisors were colleagues in the research team.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The jury supported a focus on prevention, including early intervention to keep children thriving and connected at school, and better cross-sectoral bonds via coalitions to enable social care to be linked to health care. Team-based care in general practice for proactive data use and building a culture for relationship-based care, developing a patient-centred workforce through incentivising students and expediting registration of overseas trained health workers were recommended. Assets-based community development was seen as an essential approach in linking the community with these recommendations.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>The use of citizens' juries in primary health settings is rare. In this culturally diverse community, WentWest now has a foundational understanding of what investments will deliver and has committed to institutionalising this deliberative approach into a permanent citizens assembly.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient and Public Contribution</h3>\u0000 \u0000 <p>The design of the jury was guided by several advisory groups across the local region. The research team included four consumer advisors to provide overarching feedback and external insights. The jurors were selected to be representative of the regional community. They developed the recommendations reported in this article.</p>\u0000 </section>\u0000 ","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 1","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-02-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70173","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143111859","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}
Valeria Gabellone, Fabiana Nuccetelli, Elisa Gabrielli, Leonardo Ascatigno, Pier Luigi Lopalco, Rosa Prato
<div> <section> <h3> Background</h3> <p>The introduction of screening tests for Sars-CoV-2 has been an extraordinary prevention and control tool during the COVID-19 pandemic. However, pandemic control interventions, including screening and vaccine mandates, induced refusal reactions in many people. To date, little information is available on the levels of acceptance of screening practices by the young population in school settings.</p> </section> <section> <h3> Objective</h3> <p>The objective of this work is to survey students' attitudes, behaviours and emotions towards Covid-19 screening tests by the means of a participatory research method, the World Café (WC).</p> </section> <section> <h3> Materials and Methods</h3> <p>Between March and May 2023, three WC sessions were conducted in three high schools, with 70 students enrolled on a voluntary basis. As per standard procedure, a moderator was assigned at each table to facilitate dialogue and the WCs were recorded, transcribed and imported into ATLAS.ti software for qualitative analysis.</p> </section> <section> <h3> Results</h3> <p>The analysis showed that the themes most reported during the WCs were those regarding the emotional domain, particularly feelings of distress, anxiety, fear, frustration, inadequacy and loneliness.</p> </section> <section> <h3> Discussion</h3> <p>Although the themes ‘Emotions/thoughts’ appear to be the most prominent among students, also ‘Public health policies’ constitutes a predominant theme group. Finally, the theme ‘Communication’ sparked lively debate, being the fourth most discussed topic.</p> </section> <section> <h3> Conclusions</h3> <p>The many insights from the WC analysis, when properly reframed, bring out useful elements for taking actions during prevention campaigns. Institutions and schools should focus on disseminating clear and targeted messages to help fight misinformation and distrust. Moreover, such evidence suggests that the World Café method proves to be useful and effective for exploring the emotional sphere of adolescents and analysing their thoughts, attitudes and knowledge.</p> </section> <section> <h3> Patient or Public Contribution</h3> <p>The research team collaborated with the school personnel to set up the right setting for running the Worl
{"title":"The World Café as a Tool for Evaluating the Level of Acceptance of SARS-CoV-2 Screening in School Settings, Puglia Region, Italy, 2023","authors":"Valeria Gabellone, Fabiana Nuccetelli, Elisa Gabrielli, Leonardo Ascatigno, Pier Luigi Lopalco, Rosa Prato","doi":"10.1111/hex.70137","DOIUrl":"https://doi.org/10.1111/hex.70137","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>The introduction of screening tests for Sars-CoV-2 has been an extraordinary prevention and control tool during the COVID-19 pandemic. However, pandemic control interventions, including screening and vaccine mandates, induced refusal reactions in many people. To date, little information is available on the levels of acceptance of screening practices by the young population in school settings.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Objective</h3>\u0000 \u0000 <p>The objective of this work is to survey students' attitudes, behaviours and emotions towards Covid-19 screening tests by the means of a participatory research method, the World Café (WC).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Materials and Methods</h3>\u0000 \u0000 <p>Between March and May 2023, three WC sessions were conducted in three high schools, with 70 students enrolled on a voluntary basis. As per standard procedure, a moderator was assigned at each table to facilitate dialogue and the WCs were recorded, transcribed and imported into ATLAS.ti software for qualitative analysis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The analysis showed that the themes most reported during the WCs were those regarding the emotional domain, particularly feelings of distress, anxiety, fear, frustration, inadequacy and loneliness.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Discussion</h3>\u0000 \u0000 <p>Although the themes ‘Emotions/thoughts’ appear to be the most prominent among students, also ‘Public health policies’ constitutes a predominant theme group. Finally, the theme ‘Communication’ sparked lively debate, being the fourth most discussed topic.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The many insights from the WC analysis, when properly reframed, bring out useful elements for taking actions during prevention campaigns. Institutions and schools should focus on disseminating clear and targeted messages to help fight misinformation and distrust. Moreover, such evidence suggests that the World Café method proves to be useful and effective for exploring the emotional sphere of adolescents and analysing their thoughts, attitudes and knowledge.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>The research team collaborated with the school personnel to set up the right setting for running the Worl","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 1","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-02-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70137","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143111860","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}
Elizabeth Simes, Stephen Butler, Elizabeth Allison, Barbara Barrett, Anthony Bateman, Angus Cameron, Mike Crawford, Alison Frater, Zoe Hoare, Mary McMurran, Paul Moran, Stephen Pilling, James Wason, Jessica Yakeley, Peter Fonagy
<div> <section> <h3> Introduction</h3> <p>Methodological and ethical arguments support the involvement of individuals with lived experience in research to reduce engagement barriers and ensure those directly affected by studies contribute to knowledge generation. However, there is limited evidence on the impact of including researchers with lived experience of serving a prison or community sentence in clinical trials. This qualitative study aimed to explore the value of involving researchers with lived experience of the criminal justice system as data collectors in the Mentalization for Offending Adult Males (MOAM), a multisite RCT conducted in the National Probation Service in England and Wales.</p> </section> <section> <h3> Methods</h3> <p>Semi-structured interviews were conducted with 30 trial participants and 17 key stakeholders, either in person or via telephone. The interviews were transcribed verbatim and analysed thematically.</p> </section> <section> <h3> Findings</h3> <p>Five themes emerged for trial participants and 11 for key stakeholders. For some, lived experience researchers helped overcome engagement barriers by fostering common ground with participants who were serving a prison or community sentence during recruitment. Participants reported that the involvement of lived experience researchers enhanced the study by facilitating knowledge transfer in certain instances. However, their inclusion did not eliminate all barriers and, for some participants, introduced new challenges to engagement.</p> </section> <section> <h3> Conclusion</h3> <p>Forensic lived experience researchers bridged the gap by fostering trust between data collectors and participants. Future studies should ensure that lived experience researchers receive adequate clinical supervision to support their role. The adopted methodology challenged assumptions about knowledge generation and stereotypes associated with being an ex-offender, benefiting both lived experience and traditional researchers.</p> </section> <section> <h3> Patient or Public Contribution</h3> <p>The study was developed in collaboration with User Voice (charity number: 1136047), who contributed to the study's design and conduct. The service user organisation co-designed the interview schedule and directed the protocol for participant payments, emphasising a consistent approach to avoid tokenism and ensure equal recognition of all contributions. The dissemination plan was developed in partnership with i
{"title":"Bridging the Gap: A Qualitative Study Exploring the Impact of the Involvement of Researchers With Lived Experience on a Multisite Randomised Control Trial in the National Probation Service in England and Wales","authors":"Elizabeth Simes, Stephen Butler, Elizabeth Allison, Barbara Barrett, Anthony Bateman, Angus Cameron, Mike Crawford, Alison Frater, Zoe Hoare, Mary McMurran, Paul Moran, Stephen Pilling, James Wason, Jessica Yakeley, Peter Fonagy","doi":"10.1111/hex.70162","DOIUrl":"https://doi.org/10.1111/hex.70162","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Methodological and ethical arguments support the involvement of individuals with lived experience in research to reduce engagement barriers and ensure those directly affected by studies contribute to knowledge generation. However, there is limited evidence on the impact of including researchers with lived experience of serving a prison or community sentence in clinical trials. This qualitative study aimed to explore the value of involving researchers with lived experience of the criminal justice system as data collectors in the Mentalization for Offending Adult Males (MOAM), a multisite RCT conducted in the National Probation Service in England and Wales.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Semi-structured interviews were conducted with 30 trial participants and 17 key stakeholders, either in person or via telephone. The interviews were transcribed verbatim and analysed thematically.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Five themes emerged for trial participants and 11 for key stakeholders. For some, lived experience researchers helped overcome engagement barriers by fostering common ground with participants who were serving a prison or community sentence during recruitment. Participants reported that the involvement of lived experience researchers enhanced the study by facilitating knowledge transfer in certain instances. However, their inclusion did not eliminate all barriers and, for some participants, introduced new challenges to engagement.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Forensic lived experience researchers bridged the gap by fostering trust between data collectors and participants. Future studies should ensure that lived experience researchers receive adequate clinical supervision to support their role. The adopted methodology challenged assumptions about knowledge generation and stereotypes associated with being an ex-offender, benefiting both lived experience and traditional researchers.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>The study was developed in collaboration with User Voice (charity number: 1136047), who contributed to the study's design and conduct. The service user organisation co-designed the interview schedule and directed the protocol for participant payments, emphasising a consistent approach to avoid tokenism and ensure equal recognition of all contributions. The dissemination plan was developed in partnership with i","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 1","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-02-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70162","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143111574","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}
T. Nevill, J. Keely, R. Skoss, R. Collins, K. Langdon, J. Mills, and J. Downs, (2025), “What I Wish I Had Known: Examining Parent Accounts of Managing the Health of Their Child With Intellectual Disability,” Health Expectations 28, (2025): e70138, https://doi.org/10.1111/hex.70138.
In the list of authors, the surname of second author “Keely” is incorrect. This should have read “Keeley”.
We apologize for this error.
{"title":"Erratum to “What I Wish I Had Known: Examining Parent Accounts of Managing the Health of Their Child With Intellectual Disability”","authors":"","doi":"10.1111/hex.70178","DOIUrl":"https://doi.org/10.1111/hex.70178","url":null,"abstract":"<p>T. Nevill, J. Keely, R. Skoss, R. Collins, K. Langdon, J. Mills, and J. Downs, (2025), “What I Wish I Had Known: Examining Parent Accounts of Managing the Health of Their Child With Intellectual Disability,” <i>Health Expectations</i> 28, (2025): e70138, https://doi.org/10.1111/hex.70138.</p><p>In the list of authors, the surname of second author “Keely” is incorrect. This should have read “Keeley”.</p><p>We apologize for this error.</p>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 1","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-02-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70178","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143111522","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}
Jo Wray, Jessica Russell, Faith Gibson, Charlotte Kenten, Kate Oulton
<div> <section> <h3> Background</h3> <p>The importance of enabling patients to provide feedback on their experience of healthcare is widely accepted but there are few appropriate measures to enable children and young people to directly provide feedback, particularly those with intellectual disability or younger children. Our primary aim was to develop and test patient-reported experience measures for children and young people with intellectual disability who use inpatient hospital services. A secondary aim was to test these measures with younger children aged 4–7 years without intellectual disability.</p> </section> <section> <h3> Methods</h3> <p>A hospital inpatient patient-reported experience measure previously developed for children aged 8–11 years was revised iteratively in conjunction with a parent advisory group (comprising five parents of children and young people with and without intellectual disability) and children and young people with intellectual disability. The final patient-reported experience measure was tested in children's inpatient wards at seven hospitals in England over a 3-month period.</p> </section> <section> <h3> Results</h3> <p>Parents suggested a need for a single patient-reported experience measure for all children with intellectual disability which contained simpler language, fewer questions and response options, and images to illustrate each question. The final patient-reported experience measure had 22 questions, each with a corresponding image, and a free text box in which children could add anything further. Questions addressed environment, people, care and treatment and safety.</p> <p>During testing at seven children's hospitals, 52 children and young people with intellectual disability (4–18 years) and 76 children without intellectual disability (4–7 years), all of whom received inpatient care, completed the patient-reported experience measure. Two percent of data were missing; in 16 instances respondents either ticked two responses or placed a tick between two response categories. Half the respondents added comments and/or drew a picture.</p> </section> <section> <h3> Conclusion</h3> <p>The development of a patient-reported experience measure for children and young people with intellectual disability provides a previously unavailable opportunity for them to report on their experiences of inpatient care and have their voices heard. Future work to extend testing to a wider group is underway and will enable us to clarify whether one patient-reported experience measure is valid and reli
{"title":"The Forgotten Voices: Enabling Children and Young People With Intellectual Disability to Express Their Views on Their Inpatient Hospital Experience","authors":"Jo Wray, Jessica Russell, Faith Gibson, Charlotte Kenten, Kate Oulton","doi":"10.1111/hex.70168","DOIUrl":"https://doi.org/10.1111/hex.70168","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>The importance of enabling patients to provide feedback on their experience of healthcare is widely accepted but there are few appropriate measures to enable children and young people to directly provide feedback, particularly those with intellectual disability or younger children. Our primary aim was to develop and test patient-reported experience measures for children and young people with intellectual disability who use inpatient hospital services. A secondary aim was to test these measures with younger children aged 4–7 years without intellectual disability.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A hospital inpatient patient-reported experience measure previously developed for children aged 8–11 years was revised iteratively in conjunction with a parent advisory group (comprising five parents of children and young people with and without intellectual disability) and children and young people with intellectual disability. The final patient-reported experience measure was tested in children's inpatient wards at seven hospitals in England over a 3-month period.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Parents suggested a need for a single patient-reported experience measure for all children with intellectual disability which contained simpler language, fewer questions and response options, and images to illustrate each question. The final patient-reported experience measure had 22 questions, each with a corresponding image, and a free text box in which children could add anything further. Questions addressed environment, people, care and treatment and safety.</p>\u0000 \u0000 <p>During testing at seven children's hospitals, 52 children and young people with intellectual disability (4–18 years) and 76 children without intellectual disability (4–7 years), all of whom received inpatient care, completed the patient-reported experience measure. Two percent of data were missing; in 16 instances respondents either ticked two responses or placed a tick between two response categories. Half the respondents added comments and/or drew a picture.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>The development of a patient-reported experience measure for children and young people with intellectual disability provides a previously unavailable opportunity for them to report on their experiences of inpatient care and have their voices heard. Future work to extend testing to a wider group is underway and will enable us to clarify whether one patient-reported experience measure is valid and reli","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 1","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-02-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70168","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143111614","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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