Isabelle Bogard, Julie Ayre, Jenna Smith, Joshua W. Pate, Andrew Sortwell, Jonah Gorringe, Georgia Gordon, Steven J. Kamper, Tie P. Yamato
Background
Pain is prevalent across the lifespan and contributes to significant societal and economic burdens. The public often holds misconceptions about pain and pain management. Despite this, there are no well-resourced public health initiatives delivering information about pain and pain management to the public. Adolescence is an opportune time to educate the public about pain. Health interventions designed for adolescents should reflect their understanding, beliefs and experiences; however, no studies explore this in non-clinical populations of adolescents. We aimed to explore adolescents' understanding, experiences and beliefs about pain to inform the development of a school-based pain education module.
Methods
We conducted semi-structured interviews with 25 adolescents in grades 7–10 (ages 11–16) attending Australian secondary schools. Interviews were conducted on video-conferencing software, audio-recorded, transcribed verbatim and analysed using Framework Analysis.
Results
We generated three themes: (i) physical and psychological pain are distinct, (ii) psychological and contextual factors influence how someone feels or reacts to physical pain and (iii) physical pain matters if it impacts participation in meaningful activities.
Conclusions
Adolescents' understanding and beliefs about pain do not always align with current scientific understanding of pain. School-based pain education programmes should target these areas of misalignment. Addressing adolescents' misconceptions about pain through pain education could also create a more supportive school environment for adolescents experiencing pain. Interactive approaches to learning, such as discussions that encourage adolescents to reflect on their experiences of pain, could be a promising avenue for pain education.
Patient or Public Contribution
Two co-authors are part of the study population and contributed to the study design and analysis. Their input ensured the interview guide was appropriate for the target population and provided an adolescent perspective on the findings. They were remunerated for their time in accordance with consumer involvement guidelines.
{"title":"Exploring Adolescents' Understanding, Experiences and Beliefs About Pain: A Qualitative Study","authors":"Isabelle Bogard, Julie Ayre, Jenna Smith, Joshua W. Pate, Andrew Sortwell, Jonah Gorringe, Georgia Gordon, Steven J. Kamper, Tie P. Yamato","doi":"10.1111/hex.70132","DOIUrl":"10.1111/hex.70132","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Pain is prevalent across the lifespan and contributes to significant societal and economic burdens. The public often holds misconceptions about pain and pain management. Despite this, there are no well-resourced public health initiatives delivering information about pain and pain management to the public. Adolescence is an opportune time to educate the public about pain. Health interventions designed for adolescents should reflect their understanding, beliefs and experiences; however, no studies explore this in non-clinical populations of adolescents. We aimed to explore adolescents' understanding, experiences and beliefs about pain to inform the development of a school-based pain education module.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>We conducted semi-structured interviews with 25 adolescents in grades 7–10 (ages 11–16) attending Australian secondary schools. Interviews were conducted on video-conferencing software, audio-recorded, transcribed verbatim and analysed using Framework Analysis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>We generated three themes: (i) physical and psychological pain are distinct, (ii) psychological and contextual factors influence how someone feels or reacts to physical pain and (iii) physical pain matters if it impacts participation in meaningful activities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Adolescents' understanding and beliefs about pain do not always align with current scientific understanding of pain. School-based pain education programmes should target these areas of misalignment. Addressing adolescents' misconceptions about pain through pain education could also create a more supportive school environment for adolescents experiencing pain. Interactive approaches to learning, such as discussions that encourage adolescents to reflect on their experiences of pain, could be a promising avenue for pain education.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>Two co-authors are part of the study population and contributed to the study design and analysis. Their input ensured the interview guide was appropriate for the target population and provided an adolescent perspective on the findings. They were remunerated for their time in accordance with consumer involvement guidelines.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 6","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-12-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11666834/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142883627","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}
Cathy J. Francis, Michael Hazelton, Rhonda L. Wilson
<div> <section> <h3> Background</h3> <p>Most people with mental ill health want to be involved in decision-making about their care, many mental health professionals now recognise the importance of this (at least <i>in-principle</i>) and the Convention on the Rights of Persons with Disabilities enshrines the ethical imperative to support people in making their own treatment decisions. Nonetheless, there are widespread reports of people with mental ill health being excluded from decision-making about their treatment <i>in practice</i>.</p> </section> <section> <h3> Objectives</h3> <p>We conducted a systematic review of quantitative, qualitative and mixed method research on interventions to improve opportunities for the involvement of mental healthcare service users in treatment planning. We sought to consolidate and understand the evidence on the outcomes of shared and supported decision-making for people with mental ill health.</p> </section> <section> <h3> Methods</h3> <p>Seven databases were searched and 5137 articles were screened. Articles were included if they reported on an intervention for adult service users, were published between 2008 and October 2023 and were in English. Evidence in the 140 included articles was synthesised according to the JBI guidance on Mixed Methods Systematic Reviews.</p> </section> <section> <h3> Results</h3> <p>There was evidence relating to the effects of these interventions on a range of outcomes for people with mental ill health, including on: suicidal crisis, symptoms, recovery, hospital admissions, treatment engagement and on the use of coercion by health professionals. There is favourable evidence for these types of interventions in improving some outcomes for people with mental ill health, more so than treatment-as-usual. For other outcomes, the evidence is preliminary but promising. Some areas for caution are also identified.</p> </section> <section> <h3> Conclusions</h3> <p>The review indicates that when the involvement of people with mental ill health in treatment planning is supported, there can be improved outcomes for their health and care. Areas for future research are highlighted.</p> </section> <section> <h3> Patient or Public Contribution</h3> <p>This systematic review has been guided at all stages by a researcher with experience of mental health service use, who does not wish to be identified at t
{"title":"Supported Decision-Making Interventions in Mental Healthcare: A Systematic Review of Evidence on the Outcomes for People With Mental Ill Health","authors":"Cathy J. Francis, Michael Hazelton, Rhonda L. Wilson","doi":"10.1111/hex.70134","DOIUrl":"10.1111/hex.70134","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Most people with mental ill health want to be involved in decision-making about their care, many mental health professionals now recognise the importance of this (at least <i>in-principle</i>) and the Convention on the Rights of Persons with Disabilities enshrines the ethical imperative to support people in making their own treatment decisions. Nonetheless, there are widespread reports of people with mental ill health being excluded from decision-making about their treatment <i>in practice</i>.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Objectives</h3>\u0000 \u0000 <p>We conducted a systematic review of quantitative, qualitative and mixed method research on interventions to improve opportunities for the involvement of mental healthcare service users in treatment planning. We sought to consolidate and understand the evidence on the outcomes of shared and supported decision-making for people with mental ill health.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Seven databases were searched and 5137 articles were screened. Articles were included if they reported on an intervention for adult service users, were published between 2008 and October 2023 and were in English. Evidence in the 140 included articles was synthesised according to the JBI guidance on Mixed Methods Systematic Reviews.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>There was evidence relating to the effects of these interventions on a range of outcomes for people with mental ill health, including on: suicidal crisis, symptoms, recovery, hospital admissions, treatment engagement and on the use of coercion by health professionals. There is favourable evidence for these types of interventions in improving some outcomes for people with mental ill health, more so than treatment-as-usual. For other outcomes, the evidence is preliminary but promising. Some areas for caution are also identified.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The review indicates that when the involvement of people with mental ill health in treatment planning is supported, there can be improved outcomes for their health and care. Areas for future research are highlighted.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>This systematic review has been guided at all stages by a researcher with experience of mental health service use, who does not wish to be identified at t","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 6","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-12-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11664045/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142878387","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}
Emma Cockcroft, Vidhi Bassi, Pearl L. H. Mok, Alex Adams, Anabel A. Claro, Alex M. Trafford, Matthew J. Carr, Darren M. Ashcroft, Emma Garavini, Rachel Temple, Roger T. Webb, Shruti Garg, Carolyn A. Chew-Graham
<div> <section> <h3> Background</h3> <p>Patient and public involvement and engagement (PPIE) is integral to health research. Reporting of PPIE methods and impact is becoming increasingly common in health research. However, reporting on PPIE in studies using large, routinely collected electronic health record data sets is less common. Anecdotal evidence suggests that involvement in this research context is more challenging and offers fewer opportunities for meaningful influence on the research process.</p> </section> <section> <h3> Objectives</h3> <p>This paper reports the involvement approach for a Clinical Practice Research Datalink (CPRD) study and critically reflects on the process and impact of involving young people, parents and carers in research using this UK primary care electronic health record data set.</p> </section> <section> <h3> Methods</h3> <p>The CHOOSE study investigated mental health diagnoses of children and young people (1–24 years) during the COVID-19 pandemic using the CPRD. The study was informed by a Lived Experience Advisory Panel (LEAP) which consisted of 13 members including 8 young people (13–25 years) with lived experience of mental health difficulties and 5 parents/carers, with involvement activities facilitated by project partners, mental health research charity, The McPin<sup>R</sup> Foundation. We reflect on this process in this manuscript.</p> </section> <section> <h3> Results</h3> <p>Key benefits of involving people with lived experience in this research included making sense of and contextualising findings and ensuring that they were focused on making a difference to young people's lives. Challenges included the fixed nature of the CPRD data, which did not capture all the information people with lived experience perceived to be important. Researchers expressed limited time for PPIE activities although that was compensated by McPin colleagues who organised and facilitated online meetings, and supported the young people, parents and carers during and between meetings.</p> </section> <section> <h3> Conclusions</h3> <p>This paper describes an approach to patient and public involvement in an electronic health record database study. Working collaboratively with young people, carers and other stakeholders requires sufficient time and adequate resources. We also highlight the importance of appropriate training and support and being transparent about the limitations of PPIE involvement.</p> </section>
{"title":"Involving People With Lived Experience in Electronic Health Record Database Studies Reflections and Learning From the CHOOSE Study","authors":"Emma Cockcroft, Vidhi Bassi, Pearl L. H. Mok, Alex Adams, Anabel A. Claro, Alex M. Trafford, Matthew J. Carr, Darren M. Ashcroft, Emma Garavini, Rachel Temple, Roger T. Webb, Shruti Garg, Carolyn A. Chew-Graham","doi":"10.1111/hex.70131","DOIUrl":"10.1111/hex.70131","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Patient and public involvement and engagement (PPIE) is integral to health research. Reporting of PPIE methods and impact is becoming increasingly common in health research. However, reporting on PPIE in studies using large, routinely collected electronic health record data sets is less common. Anecdotal evidence suggests that involvement in this research context is more challenging and offers fewer opportunities for meaningful influence on the research process.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Objectives</h3>\u0000 \u0000 <p>This paper reports the involvement approach for a Clinical Practice Research Datalink (CPRD) study and critically reflects on the process and impact of involving young people, parents and carers in research using this UK primary care electronic health record data set.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>The CHOOSE study investigated mental health diagnoses of children and young people (1–24 years) during the COVID-19 pandemic using the CPRD. The study was informed by a Lived Experience Advisory Panel (LEAP) which consisted of 13 members including 8 young people (13–25 years) with lived experience of mental health difficulties and 5 parents/carers, with involvement activities facilitated by project partners, mental health research charity, The McPin<sup>R</sup> Foundation. We reflect on this process in this manuscript.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Key benefits of involving people with lived experience in this research included making sense of and contextualising findings and ensuring that they were focused on making a difference to young people's lives. Challenges included the fixed nature of the CPRD data, which did not capture all the information people with lived experience perceived to be important. Researchers expressed limited time for PPIE activities although that was compensated by McPin colleagues who organised and facilitated online meetings, and supported the young people, parents and carers during and between meetings.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>This paper describes an approach to patient and public involvement in an electronic health record database study. Working collaboratively with young people, carers and other stakeholders requires sufficient time and adequate resources. We also highlight the importance of appropriate training and support and being transparent about the limitations of PPIE involvement.</p>\u0000 </section>\u0000 ","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 6","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-12-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70131","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142857083","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}
Andrew S. Moriarty, Joanne Castleton, Dean McMillan, Richard D. Riley, Kym I. E. Snell, Lucinda Archer, Lewis W. Paton, Simon Gilbody, Carolyn A. Chew-Graham
<div> <section> <h3> Introduction</h3> <p>Prediction models are increasingly being used to guide clinical decision making in primary care. There is a lack of evidence exploring the views of patients and general practitioners (GPs) in primary care around their use and implementation. We aimed to better understand the perspectives of GPs and people with lived experience of depression around the use of prediction models and communication of risk in primary care.</p> </section> <section> <h3> Methods</h3> <p>Qualitative methods were used. Data were generated over 6 months (April to October 2022) through semi-structured interviews with 23 people with lived experience of depression and 22 GPs. A multidisciplinary research team and Patient Advisory Group were involved throughout the study. Data were analysed inductively using thematic analysis.</p> </section> <section> <h3> Results</h3> <p>GPs describe using prediction models in consultations only when the models are either perceived to be useful (e.g., because they help address an important clinical problem) or if GPs feel compelled to use them to meet financial or contractual targets. These two situations are not mutually exclusive, but if neither criterion is met, a model is unlikely to be used in practice. People with lived experience of depression and GPs reported that communication of model outputs should involve a combination of risk categories, numerical information and visualisations, with discussions being tailored to the individual patients involved. Risk prediction in a mental health context was perceived to be more challenging than for physical health conditions.</p> </section> <section> <h3> Conclusion</h3> <p>Clinical prediction models are used in practice but thought must be given at the study development stage to how results will be presented and discussed with patients. Meaningful, embedded public and patient involvement and engagement are recommended when developing or implementing clinical prediction models.</p> </section> <section> <h3> Patient or Public Contribution</h3> <p>We used a combination of embedded consultation and collaboration/co-production in our approach to public and patient involvement in this study. A Patient Advisory Group made up of people with lived experience of depression were involved from study conception and contributed to study design, participant recruitment, interpretation of findings and dissemination (including in the preparation of this manuscript).</p>
{"title":"The Value of Clinical Prediction Models in General Practice: A Qualitative Study Exploring the Perspectives of People With Lived Experience of Depression and General Practitioners","authors":"Andrew S. Moriarty, Joanne Castleton, Dean McMillan, Richard D. Riley, Kym I. E. Snell, Lucinda Archer, Lewis W. Paton, Simon Gilbody, Carolyn A. Chew-Graham","doi":"10.1111/hex.70059","DOIUrl":"10.1111/hex.70059","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Prediction models are increasingly being used to guide clinical decision making in primary care. There is a lack of evidence exploring the views of patients and general practitioners (GPs) in primary care around their use and implementation. We aimed to better understand the perspectives of GPs and people with lived experience of depression around the use of prediction models and communication of risk in primary care.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Qualitative methods were used. Data were generated over 6 months (April to October 2022) through semi-structured interviews with 23 people with lived experience of depression and 22 GPs. A multidisciplinary research team and Patient Advisory Group were involved throughout the study. Data were analysed inductively using thematic analysis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>GPs describe using prediction models in consultations only when the models are either perceived to be useful (e.g., because they help address an important clinical problem) or if GPs feel compelled to use them to meet financial or contractual targets. These two situations are not mutually exclusive, but if neither criterion is met, a model is unlikely to be used in practice. People with lived experience of depression and GPs reported that communication of model outputs should involve a combination of risk categories, numerical information and visualisations, with discussions being tailored to the individual patients involved. Risk prediction in a mental health context was perceived to be more challenging than for physical health conditions.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Clinical prediction models are used in practice but thought must be given at the study development stage to how results will be presented and discussed with patients. Meaningful, embedded public and patient involvement and engagement are recommended when developing or implementing clinical prediction models.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>We used a combination of embedded consultation and collaboration/co-production in our approach to public and patient involvement in this study. A Patient Advisory Group made up of people with lived experience of depression were involved from study conception and contributed to study design, participant recruitment, interpretation of findings and dissemination (including in the preparation of this manuscript).</p>\u0000","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 6","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-12-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70059","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142857087","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}
Françoise Vendittelli, Lucie Adalid, Violaine Peyronnet, Sophie Guillaume, Nathalie Piquée, Aurore Viard-Cretat, Catherine Crenn-Hébert, Olivier Rivière, Candy Guiguet-Auclair, Study Group
Background
Few pregnant women in France wrote birth plans as in many other countries. The literature stresses the heterogeneity of birth plan content, which limits the utility of assessing the effects of birth plans on women's experience of childbirth. This study aimed to obtain a French national consensus on the structure and content of birth plans.
Methods
A multidisciplinary steering committee was established. An electronic modified Delphi study was conducted to develop a structure and content for birth plans between November 2022 and June 2023. During three Delphi consensus rounds, panellists, including perinatal health care professionals and user representatives, were asked to rate individually and independently each proposed section and subsection formulation of the birth plan for its appropriateness. An external board assessed the understandability of the final birth plan's preamble and content.
Results
The steering committee proposed 103 formulations corresponding to items to be covered in a birth plan, categorized into 8 sections and 30 subsections, for evaluation in the Delphi rounds. The first round was completed by 42 panellists (mainly midwives), the second by 39, and the third by 36. Finally, the steering committee approved the final components of the structured birth plan in 8 sections and 19 subsections, after its reviewing by the 21 members of the external board.
Conclusion
A French national Delphi process, after three rounds and validation by an external board, made it possible to reach a consensus on the structure and content of a birth plan in 8 sections and 19 subsections.
Patient or Public Contribution
User representatives were included as experts in the Delphi rounds, and in the external board to approve the final version of the structured birth plan.
{"title":"Consensus on the Structure and Content of Birth Plans: A Modified Delphi Study","authors":"Françoise Vendittelli, Lucie Adalid, Violaine Peyronnet, Sophie Guillaume, Nathalie Piquée, Aurore Viard-Cretat, Catherine Crenn-Hébert, Olivier Rivière, Candy Guiguet-Auclair, Study Group","doi":"10.1111/hex.70124","DOIUrl":"10.1111/hex.70124","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Few pregnant women in France wrote birth plans as in many other countries. The literature stresses the heterogeneity of birth plan content, which limits the utility of assessing the effects of birth plans on women's experience of childbirth. This study aimed to obtain a French national consensus on the structure and content of birth plans.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A multidisciplinary steering committee was established. An electronic modified Delphi study was conducted to develop a structure and content for birth plans between November 2022 and June 2023. During three Delphi consensus rounds, panellists, including perinatal health care professionals and user representatives, were asked to rate individually and independently each proposed section and subsection formulation of the birth plan for its appropriateness. An external board assessed the understandability of the final birth plan's preamble and content.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The steering committee proposed 103 formulations corresponding to items to be covered in a birth plan, categorized into 8 sections and 30 subsections, for evaluation in the Delphi rounds. The first round was completed by 42 panellists (mainly midwives), the second by 39, and the third by 36. Finally, the steering committee approved the final components of the structured birth plan in 8 sections and 19 subsections, after its reviewing by the 21 members of the external board.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>A French national Delphi process, after three rounds and validation by an external board, made it possible to reach a consensus on the structure and content of a birth plan in 8 sections and 19 subsections.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>User representatives were included as experts in the Delphi rounds, and in the external board to approve the final version of the structured birth plan.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 6","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-12-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70124","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142857081","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 Erwin, Sarah Neill, Tara Vassallo, Isaac Vassallo, Rob Witton, Martha Paisi
Background
Poor oral health (OH) in childhood can cause pain, affect quality of life and significantly impact adult OH. Autistic children and young people (CYP) experience inequalities in OH and are at higher risk of cavities and gum disease than neurotypical CYP.
Objective
To provide evidence and insights into the factors affecting the OH behaviours of ACYP from the perspective of ACYP, their parents/carers and Dental Health Professionals (DHPs).
Method
Semi-structured online or face-to-face interviews were conducted with CYP, parents/carers and DHPs in Southwest England.
Results
Nineteen ACYP (aged 5–18 years old), 20 parents/carers and 16 DHPs were interviewed. The themes identified were as follows: Sensory sensitivities and diet; Toothbrushing ‘battles’; Coping with the stresses of daily life in a neurotypical world; Awareness of autism and understanding of challenges to good OH; The impact on parents of trying to care their child's OH; CYP and parent/carers difficulties in obtaining OH support; What ‘good support’ looks like.
Conclusions
An increased awareness among DHPs, health and social care professionals of autism and the challenges to OH that CYP face is needed. Providing early support, strategies and resources to CYP and their parents/carers has the potential to help establish positive OH behaviours.
Public Contribution
The research team worked closely with members of the autistic community on this project. The methods used in this project were developed together with a research advisory group which included four ACYP (aged 9–17) and their parents. The team also worked with members of a youth club for ACYP aged 10–17 years old. All research documents and materials were co-produced. Members of the advisory group (T.V. and I.V.) contributed to the interpretation of the research findings and the writing of this manuscript.
{"title":"Factors Influencing the Oral Health Behaviours of Autistic Children and Young People: A Qualitative Study","authors":"Jo Erwin, Sarah Neill, Tara Vassallo, Isaac Vassallo, Rob Witton, Martha Paisi","doi":"10.1111/hex.70130","DOIUrl":"10.1111/hex.70130","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Poor oral health (OH) in childhood can cause pain, affect quality of life and significantly impact adult OH. Autistic children and young people (CYP) experience inequalities in OH and are at higher risk of cavities and gum disease than neurotypical CYP.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Objective</h3>\u0000 \u0000 <p>To provide evidence and insights into the factors affecting the OH behaviours of ACYP from the perspective of ACYP, their parents/carers and Dental Health Professionals (DHPs).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Semi-structured online or face-to-face interviews were conducted with CYP, parents/carers and DHPs in Southwest England.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Nineteen ACYP (aged 5–18 years old), 20 parents/carers and 16 DHPs were interviewed. The themes identified were as follows: Sensory sensitivities and diet; Toothbrushing ‘battles’; Coping with the stresses of daily life in a neurotypical world; Awareness of autism and understanding of challenges to good OH; The impact on parents of trying to care their child's OH; CYP and parent/carers difficulties in obtaining OH support; What ‘good support’ looks like.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>An increased awareness among DHPs, health and social care professionals of autism and the challenges to OH that CYP face is needed. Providing early support, strategies and resources to CYP and their parents/carers has the potential to help establish positive OH behaviours.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Public Contribution</h3>\u0000 \u0000 <p>The research team worked closely with members of the autistic community on this project. The methods used in this project were developed together with a research advisory group which included four ACYP (aged 9–17) and their parents. The team also worked with members of a youth club for ACYP aged 10–17 years old. All research documents and materials were co-produced. Members of the advisory group (T.V. and I.V.) contributed to the interpretation of the research findings and the writing of this manuscript.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 6","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-12-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70130","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142848446","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}
Neil McHugh, Rachel Baker, Cam Donaldson, Ahalya Bala, Marta Mojarrieta, Gregory White, Olga Biosca
Background
Engaging with the public can influence policy decisions, particularly towards more radical policy change. While established research exists exploring public perceptions on causes of health inequalities, much less exists on how to tackle health inequalities in the UK. Despite an emphasis on ‘lived experience’, currently no study has focused on how individuals with very poor health conceive of both causes of, and solutions to, health inequalities.
Methods
Q methodology was used to identify and describe the shared perspectives that exist on causes of, and solutions to, health inequalities experienced in low-income communities. Community participants living with low-incomes and poor health (n = 20) and professional stakeholders (n = 20) from London rank ordered 34 ‘Causes’ and 39 ‘Solutions’ statements onto quasi-normal shaped grids according to their point of view. Factor analysis defined factors for both ‘Causes’ and ‘Solutions’.
Results
Analysis produced three-factor solutions for both the ‘Causes’ and ‘Solutions’. ‘Causes’ are (i) ‘Systemic inequality and poverty’, (ii) ‘Ignored and marginalised communities’, (iii) ‘Precariousness, chronic stress and hopelessness’. ‘Solutions’ are (i) ‘Meeting basic needs and providing opportunities to thrive’, (ii) ‘Empowering individuals to take control’, (iii) ‘Supporting healthy choices’. No professional stakeholders aligned with ‘Ignored and marginalised communities’ while at least one community participant or professional stakeholder aligned with all other factors.
Conclusion
Results support the view that the public has a relatively sophisticated understanding of causes of health inequalities and help challenge assumptions held by policy actors that lay members of the public do not recognise and understand more upstream ways to respond to health inequalities.
Patient or Public Contribution
The public contributed to the design of the Q study. Surveys and interviews with community participants informed the development of the statement set and the statement set was also piloted with community participants and finalised based on feedback.
{"title":"Causes, Solutions and Health Inequalities: Comparing Perspectives of Professional Stakeholders and Community Participants Experiencing Low Income and Poor Health in London","authors":"Neil McHugh, Rachel Baker, Cam Donaldson, Ahalya Bala, Marta Mojarrieta, Gregory White, Olga Biosca","doi":"10.1111/hex.70128","DOIUrl":"10.1111/hex.70128","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Engaging with the public can influence policy decisions, particularly towards more radical policy change. While established research exists exploring public perceptions on causes of health inequalities, much less exists on how to tackle health inequalities in the UK. Despite an emphasis on ‘lived experience’, currently no study has focused on how individuals with very poor health conceive of both causes of, and solutions to, health inequalities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Q methodology was used to identify and describe the shared perspectives that exist on causes of, and solutions to, health inequalities experienced in low-income communities. Community participants living with low-incomes and poor health (<i>n</i> = 20) and professional stakeholders (<i>n</i> = 20) from London rank ordered 34 ‘Causes’ and 39 ‘Solutions’ statements onto quasi-normal shaped grids according to their point of view. Factor analysis defined factors for both ‘Causes’ and ‘Solutions’.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Analysis produced three-factor solutions for both the ‘Causes’ and ‘Solutions’. ‘Causes’ are (i) ‘Systemic inequality and poverty’, (ii) ‘Ignored and marginalised communities’, (iii) ‘Precariousness, chronic stress and hopelessness’. ‘Solutions’ are (i) ‘Meeting basic needs and providing opportunities to thrive’, (ii) ‘Empowering individuals to take control’, (iii) ‘Supporting healthy choices’. No professional stakeholders aligned with ‘Ignored and marginalised communities’ while at least one community participant or professional stakeholder aligned with all other factors.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Results support the view that the public has a relatively sophisticated understanding of causes of health inequalities and help challenge assumptions held by policy actors that lay members of the public do not recognise and understand more upstream ways to respond to health inequalities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>The public contributed to the design of the Q study. Surveys and interviews with community participants informed the development of the statement set and the statement set was also piloted with community participants and finalised based on feedback.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 6","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-12-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70128","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142840373","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}
Marita Hennessy, Rebecca Dennehy, Hannah O'Leary, Keelin O'Donoghue, RE:CURRENT Research Advisory Group
<div> <section> <h3> Introduction</h3> <p>Involving knowledge users in research can facilitate the translation of evidence into policy and practice. How to best involve and support various types of knowledge users, including patient and public involvement contributors, in research is an identified knowledge gap. We conducted a national evaluation of recurrent miscarriage care supported by a Research Advisory Group (convened in March 2020) comprising a range of knowledge users, including parent advocates and people involved in the management/provision of services. The Group met virtually nine times, and actively collaborated beyond this on various research activities across the project. In this paper, we share insights from our collective evaluation of these involvement efforts.</p> </section> <section> <h3> Methods</h3> <p>We drew on records kept over the timespan of the project to describe involvement activities and experiences. Advisory Group members participated in an electronic survey to assess their involvement experiences at two time points (February 2021 and May 2022); we analysed the results descriptively. In May 2022, we hosted a virtual World Café, comprising the Research Team and Advisory Group, to explore what worked well and what could have been improved regarding involvement activities within the project; we analysed this data thematically.</p> </section> <section> <h3> Results</h3> <p>Responses to both rounds of the survey were positive, with people reporting: their ability to discuss research issues, contribute to the research, express their own views; feeling valued as a partner; that they could bring their own ideas and values to the research; perceived potential to gain status, expertise, or credibility because of their involvement. Themes constructed from the Word Café discussions highlighted that structural and relational spaces shaped the accessibility and experience of involvement.</p> </section> <section> <h3> Conclusion</h3> <p>Members reported a positive and rewarding experience with a visible impact on the research process but highlighted issues with the feasibility and scope of the research protocol and challenges to autonomous involvement in aspects reliant on clinical expertise. Our analysis reinforces that the relational nature of involvement takes precedence over instrumental aspects or techniques. Realistic study protocols that allow time and space for the evolving nature of research with knowledge users, and institutional and financial support to facilitate meaningful involvement, are needed.</p> </s
{"title":"Involving Knowledge Users in Health Services Research: Collective Reflections and Learning From a National Evaluation of Recurrent Miscarriage Services","authors":"Marita Hennessy, Rebecca Dennehy, Hannah O'Leary, Keelin O'Donoghue, RE:CURRENT Research Advisory Group","doi":"10.1111/hex.70125","DOIUrl":"10.1111/hex.70125","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Involving knowledge users in research can facilitate the translation of evidence into policy and practice. How to best involve and support various types of knowledge users, including patient and public involvement contributors, in research is an identified knowledge gap. We conducted a national evaluation of recurrent miscarriage care supported by a Research Advisory Group (convened in March 2020) comprising a range of knowledge users, including parent advocates and people involved in the management/provision of services. The Group met virtually nine times, and actively collaborated beyond this on various research activities across the project. In this paper, we share insights from our collective evaluation of these involvement efforts.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>We drew on records kept over the timespan of the project to describe involvement activities and experiences. Advisory Group members participated in an electronic survey to assess their involvement experiences at two time points (February 2021 and May 2022); we analysed the results descriptively. In May 2022, we hosted a virtual World Café, comprising the Research Team and Advisory Group, to explore what worked well and what could have been improved regarding involvement activities within the project; we analysed this data thematically.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Responses to both rounds of the survey were positive, with people reporting: their ability to discuss research issues, contribute to the research, express their own views; feeling valued as a partner; that they could bring their own ideas and values to the research; perceived potential to gain status, expertise, or credibility because of their involvement. Themes constructed from the Word Café discussions highlighted that structural and relational spaces shaped the accessibility and experience of involvement.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Members reported a positive and rewarding experience with a visible impact on the research process but highlighted issues with the feasibility and scope of the research protocol and challenges to autonomous involvement in aspects reliant on clinical expertise. Our analysis reinforces that the relational nature of involvement takes precedence over instrumental aspects or techniques. Realistic study protocols that allow time and space for the evolving nature of research with knowledge users, and institutional and financial support to facilitate meaningful involvement, are needed.</p>\u0000 </s","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 6","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-12-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70125","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142840374","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}
Emily K. Phillips, Anna M. Chudyk, Caroline Monnin, Annette S. H. Schultz, Rakesh C. Arora, Todd A. Duhamel, Sheila O'Keefe-McCarthy
Introduction
Patient and care partner engagement in research (PER) is important in generating knowledge to improve healthcare. Arts-based methods (ABM) use art in the research process to share aesthetic knowledge, which is knowledge that may be too complex to share only verbally. Together, PER and ABM are potentially synergistic, as both are participatory, problem-focused, dialogic, and collaborative; yet little is known of the utility of ABM for PER.
Methods
A narrative review was performed to identify, collate, and summarize the ways ABM has been used with PER and share the impacts of ABM on PER. The databases CINAHL, Scopus, and PubMed were searched, and 15 articles were included.
Results
A wide variety of ABM were used for PER, with some studies using multiple ABMs. The use of ABM for PER was reported to be decolonizing, shifted power from researchers to people with lived experience, and reduced tokenism. People with lived experience shared their knowledge directly through their art, deepening the understanding of their emotions, feelings, and relationships.
Conclusion
Researchers should consider the benefits of the participatory nature of ABM and explore how to engage people with lived experience in their work beyond data collection. Researchers engaging people with lived experience should consider using ABM as a way to operationalize PER to elicit aesthetic knowledge and strengthen power equalization.
Patient or Public Contribution
No patients or members of the public contributed to this review due to a lack of funding to support their meaningful involvement.
导言：患者和护理伙伴参与研究（PER）对于创造知识以改善医疗保健非常重要。基于艺术的方法（ABM）在研究过程中使用艺术来分享美学知识，这些知识可能过于复杂，无法仅通过口头分享。由于 PER 和 ABM 都是参与式的、以问题为中心的、对话式的和协作式的，因此二者结合在一起可能会产生协同效应；然而，人们对 ABM 在 PER 中的效用知之甚少：我们进行了一项叙述性综述，以确定、整理和总结 ABM 与 PER 的使用方式，并分享 ABM 对 PER 的影响。检索了 CINAHL、Scopus 和 PubMed 等数据库，共收录了 15 篇文章：结果：在 PER 中使用了多种 ABM，其中一些研究使用了多种 ABM。据报道，在 PER 中使用 ABM 具有去殖民化的作用，将权力从研究人员转移到了有生活经验的人身上，并减少了象征性的做法。有生活经验的人通过他们的艺术直接分享他们的知识，加深了对他们的情绪、情感和关系的理解：结论：研究人员应考虑到注重结果的管理的参与性所带来的益处，并探索如何让有生活经验的人参与到数据收集以外的工作中。让有生活经验的人参与的研究人员应考虑使用 ABM 作为操作 PER 的一种方式，以激发审美知识并加强权力平等：由于缺乏资金支持他们进行有意义的参与，没有患者或公众成员为本综述做出贡献。
{"title":"The Use of Arts-Based Methods to Enhance Patient Engagement in Health Research","authors":"Emily K. Phillips, Anna M. Chudyk, Caroline Monnin, Annette S. H. Schultz, Rakesh C. Arora, Todd A. Duhamel, Sheila O'Keefe-McCarthy","doi":"10.1111/hex.70127","DOIUrl":"10.1111/hex.70127","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Patient and care partner engagement in research (PER) is important in generating knowledge to improve healthcare. Arts-based methods (ABM) use art in the research process to share aesthetic knowledge, which is knowledge that may be too complex to share only verbally. Together, PER and ABM are potentially synergistic, as both are participatory, problem-focused, dialogic, and collaborative; yet little is known of the utility of ABM for PER.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A narrative review was performed to identify, collate, and summarize the ways ABM has been used with PER and share the impacts of ABM on PER. The databases CINAHL, Scopus, and PubMed were searched, and 15 articles were included.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>A wide variety of ABM were used for PER, with some studies using multiple ABMs. The use of ABM for PER was reported to be decolonizing, shifted power from researchers to people with lived experience, and reduced tokenism. People with lived experience shared their knowledge directly through their art, deepening the understanding of their emotions, feelings, and relationships.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Researchers should consider the benefits of the participatory nature of ABM and explore how to engage people with lived experience in their work beyond data collection. Researchers engaging people with lived experience should consider using ABM as a way to operationalize PER to elicit aesthetic knowledge and strengthen power equalization.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>No patients or members of the public contributed to this review due to a lack of funding to support their meaningful involvement.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 6","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-12-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70127","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142831063","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}
Nora Hamdiui, Maartje Boer, Jim van Steenbergen, Maria van den Muijsenbergh, Aura Timen, Mart Stein
<div> <section> <h3> Introduction</h3> <p>In the Netherlands, since 1996, there is a national cervical cancer (CC) screening programme in place for women aged 30–60 years. The participation of Turkish- and Moroccan-Dutch women is very low. To facilitate their informed decision-making, we developed a culturally sensitive educational video, and evaluated it through a questionnaire study. Since we used multiple strategies for the recruitment of respondents, we aimed (1) to explore which sampling strategy resulted in which type of respondents, (2) to investigate which sampling strategy and individual characteristics were associated with successful recruitment of other respondents, and (3) to examine similarity between those recruited via respondent-driven sampling (RDS).</p> </section> <section> <h3> Methods</h3> <p>Six sampling strategies were used and compared to explore their recruitment success: (1) RDS (i.e. peer-to-peer recruitment), (2) public and private women's Facebook groups, (3) Instagram, (4) researchers' network, (5) offline organizations (e.g., community centres and mosques), and (6) other channels (e.g. flyers, infographics, and information meetings). To do this, <i>χ</i><sup>2</sup> tests, a multivariate logistic regression, and intra class correlations (ICCs) were performed.</p> </section> <section> <h3> Results</h3> <p>Overall, 782 Moroccan- and 696 Turkish-Dutch respondents were included in the analysis. Almost 40% filled out the questionnaire via RDS. RDS yields more often older, lower educated, and first-generation immigrant women than average. Respondents recruited via RDS have more often low CC screening knowledge and make more often uninformed CC screening decisions than average. Social media channels, however, yielded more younger, highly educated, and second-generation immigrant women than average. Sociodemographic characteristics and attitudes towards CC screening varied more strongly within than between network trees. The probability that paired respondents within a network tree had similar characteristics varied strongly depending on the characteristic.</p> </section> <section> <h3> Conclusions</h3> <p>By using RDS and asking respondents to recruit peers, the more hard-to-reach individuals (i.e. older, lower educated, and first-generation immigrants) were reached. By using social media channels, younger, highly educated, and second-generation individuals can be recruited. RDS yielded more often women with low CC screening knowledge and women making uninformed CC screening decisions. To reach the individuals in need of tail
导言：荷兰自 1996 年起开始实施一项针对 30-60 岁妇女的全国宫颈癌（CC）筛查计划。土耳其裔和摩洛哥裔荷兰妇女的参与率非常低。为了帮助她们做出知情决定，我们制作了一部具有文化敏感性的教育视频，并通过问卷调查对其进行了评估。由于我们采用了多种策略来招募受访者，因此我们的目标是：（1）探讨哪种抽样策略会产生哪种类型的受访者；（2）调查哪种抽样策略和个人特征与成功招募到其他受访者有关；（3）研究通过受访者驱动抽样（RDS）招募到的受访者之间的相似性：我们使用了六种抽样策略并对其进行了比较，以探讨其招募成功率：(1) RDS（即点对点招募）；(2) 公共和私人妇女 Facebook 群组；(3) Instagram；(4) 研究人员网络；(5) 线下组织（如社区中心和清真寺）；(6) 其他渠道（如传单、信息图表和信息会议）。为此，我们进行了χ2 检验、多元逻辑回归和类内相关性（ICCs）检验：共有 782 名摩洛哥受访者和 696 名土耳其-荷兰受访者参与了分析。近 40% 的受访者通过 RDS 填写了问卷。与平均水平相比，通过 RDS 募集的受访者多为年龄较大、受教育程度较低的第一代移民妇女。与平均水平相比，通过 RDS 招募的受访者往往对 CC 筛查知识知之甚少，往往在不知情的情况下做出 CC 筛查决定。然而，社交媒体渠道的受访者中，年轻、受过高等教育和第二代移民妇女的比例高于平均水平。与网络树之间相比，网络树内部的社会人口特征和对 CC 筛查的态度差异更大。网络树内配对受访者具有相似特征的概率因特征不同而有很大差异：通过使用 RDS 和要求受访者招募同伴，较难接触到的人群（即年龄较大、受教育程度较低和第一代移民）被接触到了。通过使用社交媒体渠道，可以招募到年轻、高学历和第二代移民。在 RDS 中，更多的女性对 CC 筛查知之甚少，也更多的女性在不知情的情况下做出了 CC 筛查决定。为了接触到需要定制信息或符合其需求的干预措施的人群，我们建议使用 RDS 作为干预措施的实施策略：在 RDS 之后，我们让摩洛哥和土耳其裔荷兰妇女参与招募其他摩洛哥和土耳其裔荷兰妇女。通过招募，妇女们能够填写我们的调查问卷，并观看我们具有文化敏感性的教育视频，以改善她们对 CC 筛查计划的知情决策。
{"title":"Exploring Different Sampling Strategies: A Description of Our Success in Reaching Hard-to-Reach Turkish and Moroccan Immigrant Women in The Netherlands","authors":"Nora Hamdiui, Maartje Boer, Jim van Steenbergen, Maria van den Muijsenbergh, Aura Timen, Mart Stein","doi":"10.1111/hex.70105","DOIUrl":"10.1111/hex.70105","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>In the Netherlands, since 1996, there is a national cervical cancer (CC) screening programme in place for women aged 30–60 years. The participation of Turkish- and Moroccan-Dutch women is very low. To facilitate their informed decision-making, we developed a culturally sensitive educational video, and evaluated it through a questionnaire study. Since we used multiple strategies for the recruitment of respondents, we aimed (1) to explore which sampling strategy resulted in which type of respondents, (2) to investigate which sampling strategy and individual characteristics were associated with successful recruitment of other respondents, and (3) to examine similarity between those recruited via respondent-driven sampling (RDS).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Six sampling strategies were used and compared to explore their recruitment success: (1) RDS (i.e. peer-to-peer recruitment), (2) public and private women's Facebook groups, (3) Instagram, (4) researchers' network, (5) offline organizations (e.g., community centres and mosques), and (6) other channels (e.g. flyers, infographics, and information meetings). To do this, <i>χ</i><sup>2</sup> tests, a multivariate logistic regression, and intra class correlations (ICCs) were performed.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Overall, 782 Moroccan- and 696 Turkish-Dutch respondents were included in the analysis. Almost 40% filled out the questionnaire via RDS. RDS yields more often older, lower educated, and first-generation immigrant women than average. Respondents recruited via RDS have more often low CC screening knowledge and make more often uninformed CC screening decisions than average. Social media channels, however, yielded more younger, highly educated, and second-generation immigrant women than average. Sociodemographic characteristics and attitudes towards CC screening varied more strongly within than between network trees. The probability that paired respondents within a network tree had similar characteristics varied strongly depending on the characteristic.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>By using RDS and asking respondents to recruit peers, the more hard-to-reach individuals (i.e. older, lower educated, and first-generation immigrants) were reached. By using social media channels, younger, highly educated, and second-generation individuals can be recruited. RDS yielded more often women with low CC screening knowledge and women making uninformed CC screening decisions. To reach the individuals in need of tail","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 6","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-12-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70105","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142831039","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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