<div> <section> <h3> Introduction</h3> <p>In the United Kingdom, there are a growing number of specialist dementia nurses called Admiral Nurses. Admiral Nurses, supported in their professional development and clinical supervision by the charity Dementia UK, work with families affected by dementia using a relationship-centred approach. Given the growing need for this type of support, Dementia UK is committed to research that will expand the evidence base for Admiral Nursing. This article describes a stakeholder consultation to identify research priorities for Admiral Nursing for the next 3 years (2023–2026).</p> </section> <section> <h3> Methods</h3> <p>We adopted a participatory approach using an adapted Nominal Group Technique and priority-setting workshop. All elements of the process were designed in consultation with a steering group comprising a range of stakeholders, including people with dementia, carers, Admiral Nurses, Dementia UK staff and researchers. Stakeholders were identified as those who were likely to be affected by or interested in the emerging research priorities. Nominal groups were held both face-to-face and online. A total of 144 people shared their research priorities. Data generated through each nominal group were thematically analysed and then ranked in order of priority.</p> </section> <section> <h3> Results</h3> <p>Four themes reflecting research priority areas were taken to a priority-setting workshop for consideration. This resulted in three research priorities for Admiral Nursing: (1) people with dementia who live alone and carers who provide support from a distance; (2) people living with young onset and rarer dementia and their families; and (3) people living with multiple health conditions alongside dementia, including mental health problems. Risk, diversity and the effectiveness of Admiral Nursing were strands that ran throughout these themes.</p> </section> <section> <h3> Conclusions</h3> <p>We identified shared research priorities for Admiral Nursing using a rigorous, consensus-driven approach involving key stakeholders. These priorities reflect a desire to ensure that Admiral Nursing services reach the most vulnerable people living with dementia and their families and respond to the widening health and social care inequalities faced by this group.</p> </section> <section> <h3> Patient and Public Contribution</h3> <p>People with dementia and carers were involved in the design of this process as members of our stee
{"title":"Stakeholder Consultation to Establish Research Priorities for Specialist Dementia Nursing in the United Kingdom","authors":"Emma Wolverson, Amy Pepper, Karen Harrison Dening","doi":"10.1111/hex.14165","DOIUrl":"10.1111/hex.14165","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>In the United Kingdom, there are a growing number of specialist dementia nurses called Admiral Nurses. Admiral Nurses, supported in their professional development and clinical supervision by the charity Dementia UK, work with families affected by dementia using a relationship-centred approach. Given the growing need for this type of support, Dementia UK is committed to research that will expand the evidence base for Admiral Nursing. This article describes a stakeholder consultation to identify research priorities for Admiral Nursing for the next 3 years (2023–2026).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>We adopted a participatory approach using an adapted Nominal Group Technique and priority-setting workshop. All elements of the process were designed in consultation with a steering group comprising a range of stakeholders, including people with dementia, carers, Admiral Nurses, Dementia UK staff and researchers. Stakeholders were identified as those who were likely to be affected by or interested in the emerging research priorities. Nominal groups were held both face-to-face and online. A total of 144 people shared their research priorities. Data generated through each nominal group were thematically analysed and then ranked in order of priority.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Four themes reflecting research priority areas were taken to a priority-setting workshop for consideration. This resulted in three research priorities for Admiral Nursing: (1) people with dementia who live alone and carers who provide support from a distance; (2) people living with young onset and rarer dementia and their families; and (3) people living with multiple health conditions alongside dementia, including mental health problems. Risk, diversity and the effectiveness of Admiral Nursing were strands that ran throughout these themes.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>We identified shared research priorities for Admiral Nursing using a rigorous, consensus-driven approach involving key stakeholders. These priorities reflect a desire to ensure that Admiral Nursing services reach the most vulnerable people living with dementia and their families and respond to the widening health and social care inequalities faced by this group.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient and Public Contribution</h3>\u0000 \u0000 <p>People with dementia and carers were involved in the design of this process as members of our stee","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 5","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11442988/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142332752","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}
Suzanne Dawson, Candice Oster, Michael Page, Stacey George
<div> <section> <h3> Introduction</h3> <p>Restrictive practice use in residential aged care homes internationally is unacceptably high. Although policies and legislation mandate the reduction or elimination of restrictive practices, there remains a gap in knowledge regarding strategies that have been effective in achieving a sustained reduction in restraint use. There is an urgent need to identify effective and feasible interventions that aged care staff can implement in everyday practice to reduce restraint use. Safewards is an evidence-based programme that has demonstrated effectiveness in reducing conflict and restrictive practice use in inpatient psychiatric settings and has the potential to address the issue of restraint use in aged care homes. This study aims to evaluate the feasibility of Safewards in reducing restrictive practices in residential aged care homes.</p> </section> <section> <h3> Methods</h3> <p>This pilot and feasibility study will adopt a mixed methods process and outcomes evaluation. Safewards will be implemented in two Australian residential aged care homes. The Reach, Effectiveness, Adoption, Implementation and Maintenance framework will be used to evaluate implementation outcomes. Additionally, the Consolidated Framework for Implementation Research will be used to guide qualitative data collection (including semi-structured interviews with residents/family members, aged care leaders and staff) and explain the facilitators and barriers to effective implementation.</p> </section> <section> <h3> Conclusion</h3> <p>This study will provide pilot evidence on the feasibility of the Safewards programme in residential aged care homes. Understanding the processes and adaptations for implementing and evaluating Safewards in residential aged care will inform a future trial in aged care to assess its effectiveness. More broadly, the findings will support the implementation of an international aged care policy of reducing restrictive practices in residential aged care.</p> </section> <section> <h3> Patient or Public Contribution</h3> <p>A person with lived experience of caring for someone with dementia is employed as a Safewards facilitator and is a member of the steering committee. Residents and family members will be invited to participate in the project steering committee and provide feedback on their experience of Safewards.</p> </section> <section> <h3> Trial Registration</h3> <p>ACTRN12624000044527.</p> </section>
{"title":"Exploring the Safewards Programme to Reduce Restrictive Practices in Residential Aged Care: Protocol for a Pilot and Feasibility Study","authors":"Suzanne Dawson, Candice Oster, Michael Page, Stacey George","doi":"10.1111/hex.70037","DOIUrl":"10.1111/hex.70037","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Restrictive practice use in residential aged care homes internationally is unacceptably high. Although policies and legislation mandate the reduction or elimination of restrictive practices, there remains a gap in knowledge regarding strategies that have been effective in achieving a sustained reduction in restraint use. There is an urgent need to identify effective and feasible interventions that aged care staff can implement in everyday practice to reduce restraint use. Safewards is an evidence-based programme that has demonstrated effectiveness in reducing conflict and restrictive practice use in inpatient psychiatric settings and has the potential to address the issue of restraint use in aged care homes. This study aims to evaluate the feasibility of Safewards in reducing restrictive practices in residential aged care homes.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>This pilot and feasibility study will adopt a mixed methods process and outcomes evaluation. Safewards will be implemented in two Australian residential aged care homes. The Reach, Effectiveness, Adoption, Implementation and Maintenance framework will be used to evaluate implementation outcomes. Additionally, the Consolidated Framework for Implementation Research will be used to guide qualitative data collection (including semi-structured interviews with residents/family members, aged care leaders and staff) and explain the facilitators and barriers to effective implementation.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>This study will provide pilot evidence on the feasibility of the Safewards programme in residential aged care homes. Understanding the processes and adaptations for implementing and evaluating Safewards in residential aged care will inform a future trial in aged care to assess its effectiveness. More broadly, the findings will support the implementation of an international aged care policy of reducing restrictive practices in residential aged care.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>A person with lived experience of caring for someone with dementia is employed as a Safewards facilitator and is a member of the steering committee. Residents and family members will be invited to participate in the project steering committee and provide feedback on their experience of Safewards.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Trial Registration</h3>\u0000 \u0000 <p>ACTRN12624000044527.</p>\u0000 </section>\u0000 ","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 5","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-09-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70037","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142332750","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}
Daksh Tyagi, Sheryn Tan, Charis Tang, Joshua Kovoor, Aashray Gupta, WengOnn Chan, Samuel Gluck, Toby Gilbert, Andrew C. Zannettino, Patrick G. O'Callaghan, Stephen Bacchi
<p>We read with interest the study by Abdelhalim et al. (DOI:10.1111/hex.14050) that addressed the persistent challenge of delayed hospital discharge (DHD) by identifying its primary causes and emphasising the significance of effective communication and management in healthcare settings [<span>1</span>]. This has the effect of prolonging hospital stays, increasing costs, reducing capacity and poorer patient outcomes [<span>2-5</span>].</p><p>One of the main findings of the study is that poor communication—between hospitals, community health and social care providers, and within hospital departments—was consistently a factor in DHD [<span>1</span>]. Numerous articles highlighted the inadequate communication and coordination among hospital staff, patients and healthcare and community institutions acting as a significant obstacle to minimising DHD. Additionally, many research findings agreed that the primary cause of the DHD issue lies in hospital management, internal processes and inadequate coordination [<span>1</span>].</p><p>In line with this, we conducted a multicentre retrospective cohort study evaluating consecutive general medicine inpatient admissions to two metropolitan tertiary hospitals over a 2.5-year period using natural language processing (NLP) to evaluate documented discharge delays.</p><p>Our findings provide a South Australian inpatient general medicine complement to the 700 studies spanning the last 24 years analysed by Abdelhalim et al. Evaluation of 28,377 unique visits and associated 193,251 individual ward round notes suggested significant association between the use of a delay phrase (‘wait’ and ‘chase’) in a ward round note and greater length of stay (LOS). Among the individual hospital processes evaluated, the term ‘wait’ was frequently linked with magnetic resonance imaging (MRI) and computed tomography (CT), whereas the term ‘chase’ was frequently linked with blood tests.</p><p>Our study demonstrated that it is feasible to use NLP on medical free text to gain insights into reasons associated with DHD. Patients who had ward round notes with specific delay phrases had longer LOS. This method can also be used to identify hospital processes that are frequently discussed in the context of these described delays. This type of analysis may present novel insights into aspects of the psychology of medical officers. Results that typically have a shorter turnaround time, such as blood and urine tests, were discussed more in the context of ‘chasing’, whereas other test results, such as MRI and CT, were more often discussed in the context of ‘waiting’.</p><p>Although the results of the study are novel, their utility has not yet been investigated. Some identified delays may not be amenable to change. However, there may be delays amenable to change in specific circumstances. For example, when an access-block crisis point is reached, a hospital system may respond by leveraging additional resources to overcome this situation. An automate
{"title":"The Simple Act of Waiting: Natural Language Processing in the Identification of In-Hospital Delays","authors":"Daksh Tyagi, Sheryn Tan, Charis Tang, Joshua Kovoor, Aashray Gupta, WengOnn Chan, Samuel Gluck, Toby Gilbert, Andrew C. Zannettino, Patrick G. O'Callaghan, Stephen Bacchi","doi":"10.1111/hex.70017","DOIUrl":"10.1111/hex.70017","url":null,"abstract":"<p>We read with interest the study by Abdelhalim et al. (DOI:10.1111/hex.14050) that addressed the persistent challenge of delayed hospital discharge (DHD) by identifying its primary causes and emphasising the significance of effective communication and management in healthcare settings [<span>1</span>]. This has the effect of prolonging hospital stays, increasing costs, reducing capacity and poorer patient outcomes [<span>2-5</span>].</p><p>One of the main findings of the study is that poor communication—between hospitals, community health and social care providers, and within hospital departments—was consistently a factor in DHD [<span>1</span>]. Numerous articles highlighted the inadequate communication and coordination among hospital staff, patients and healthcare and community institutions acting as a significant obstacle to minimising DHD. Additionally, many research findings agreed that the primary cause of the DHD issue lies in hospital management, internal processes and inadequate coordination [<span>1</span>].</p><p>In line with this, we conducted a multicentre retrospective cohort study evaluating consecutive general medicine inpatient admissions to two metropolitan tertiary hospitals over a 2.5-year period using natural language processing (NLP) to evaluate documented discharge delays.</p><p>Our findings provide a South Australian inpatient general medicine complement to the 700 studies spanning the last 24 years analysed by Abdelhalim et al. Evaluation of 28,377 unique visits and associated 193,251 individual ward round notes suggested significant association between the use of a delay phrase (‘wait’ and ‘chase’) in a ward round note and greater length of stay (LOS). Among the individual hospital processes evaluated, the term ‘wait’ was frequently linked with magnetic resonance imaging (MRI) and computed tomography (CT), whereas the term ‘chase’ was frequently linked with blood tests.</p><p>Our study demonstrated that it is feasible to use NLP on medical free text to gain insights into reasons associated with DHD. Patients who had ward round notes with specific delay phrases had longer LOS. This method can also be used to identify hospital processes that are frequently discussed in the context of these described delays. This type of analysis may present novel insights into aspects of the psychology of medical officers. Results that typically have a shorter turnaround time, such as blood and urine tests, were discussed more in the context of ‘chasing’, whereas other test results, such as MRI and CT, were more often discussed in the context of ‘waiting’.</p><p>Although the results of the study are novel, their utility has not yet been investigated. Some identified delays may not be amenable to change. However, there may be delays amenable to change in specific circumstances. For example, when an access-block crisis point is reached, a hospital system may respond by leveraging additional resources to overcome this situation. An automate","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 5","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-09-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11442310/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142332753","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}
Shiamaa Al-Mashhadani, Mona Nasser, Anas Alsalami, Lorna Burns, Martha Paisi
<div> <section> <h3> Background</h3> <p>This systematic review investigates barriers and enablers to dental care utilization by disabled children. Given the high global prevalence of disabilities in children, coupled with poor oral hygiene and a 45% rate of dental caries in this group, developing inclusive oral health strategies is critical. The review aims to synthesize literature on factors affecting oral healthcare improvement for disabled children, identifying barriers, facilitators and knowledge gaps.</p> </section> <section> <h3> Methods</h3> <p>The review was conducted following the Joanna Briggs Institute's methods and reported according to PRISMA guidelines. A comprehensive search spanned multiple databases, considering perspectives from carers, parents, dentists and health professionals. The focus was on studies involving children up to age 17 with disabilities, as defined by WHO, using dental care services. Exclusions included non-qualitative studies, populations over 18 and nondisabled children. There were no restrictions on publication date or language. Thematic synthesis of the studies extracted themes related to barriers and enablers in oral healthcare for disabled children.</p> </section> <section> <h3> Results</h3> <p>Thematic synthesis identified five overarching themes: stigma, communication issues, professional development, oral health education and medical-dental collaboration. Facilitators included enhancing accessibility and availability of dental care through a holistic approach, improving dental care facility environments and ensuring skilled dental care providers.</p> </section> <section> <h3> Discussion</h3> <p>The review underscores the importance of interprofessional collaboration, improved parent/caregiver education and specialized dental facilities to support children with disabilities. It identifies key barriers and facilitators in dental care, including challenging stereotypes, improving communication between providers and parents, enhancing holistic training and addressing gaps in oral health education and integrated healthcare systems.</p> </section> <section> <h3> Conclusion</h3> <p>Addressing the complex dynamics of dental care for disabled children is essential for developing inclusive and effective preventive and therapeutic strategies. This review highlights the need for tailored approaches and enhanced support systems to improve oral health outcomes in this vulnerable population.</p> </section
{"title":"Barriers and Facilitators to Dental Care Services Utilization Among Children With Disabilities: A Systematic Review and Thematic Synthesis","authors":"Shiamaa Al-Mashhadani, Mona Nasser, Anas Alsalami, Lorna Burns, Martha Paisi","doi":"10.1111/hex.70049","DOIUrl":"10.1111/hex.70049","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>This systematic review investigates barriers and enablers to dental care utilization by disabled children. Given the high global prevalence of disabilities in children, coupled with poor oral hygiene and a 45% rate of dental caries in this group, developing inclusive oral health strategies is critical. The review aims to synthesize literature on factors affecting oral healthcare improvement for disabled children, identifying barriers, facilitators and knowledge gaps.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>The review was conducted following the Joanna Briggs Institute's methods and reported according to PRISMA guidelines. A comprehensive search spanned multiple databases, considering perspectives from carers, parents, dentists and health professionals. The focus was on studies involving children up to age 17 with disabilities, as defined by WHO, using dental care services. Exclusions included non-qualitative studies, populations over 18 and nondisabled children. There were no restrictions on publication date or language. Thematic synthesis of the studies extracted themes related to barriers and enablers in oral healthcare for disabled children.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Thematic synthesis identified five overarching themes: stigma, communication issues, professional development, oral health education and medical-dental collaboration. Facilitators included enhancing accessibility and availability of dental care through a holistic approach, improving dental care facility environments and ensuring skilled dental care providers.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Discussion</h3>\u0000 \u0000 <p>The review underscores the importance of interprofessional collaboration, improved parent/caregiver education and specialized dental facilities to support children with disabilities. It identifies key barriers and facilitators in dental care, including challenging stereotypes, improving communication between providers and parents, enhancing holistic training and addressing gaps in oral health education and integrated healthcare systems.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Addressing the complex dynamics of dental care for disabled children is essential for developing inclusive and effective preventive and therapeutic strategies. This review highlights the need for tailored approaches and enhanced support systems to improve oral health outcomes in this vulnerable population.</p>\u0000 </section","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 5","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-09-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70049","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142332749","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}
<p>I read with great interest the review article entitled “A Rapid Review of Guidelines on the Involvement of Adolescents in Health Research” [<span>1</span>]. The authors highlight the importance of meaningful adolescent participation in research, a principle I strongly endorse as a high school advocate engaged in cardiovascular disease (CVD) research. Adolescents, as a distinct and dynamic population, offer unique perspectives that are essential for the relevance and impact of health research, particularly in matters directly affecting them. However, as the review reveals, existing guidelines often fall short of providing comprehensive frameworks for youth involvement. This gap is concerning, given the potential for adolescents to significantly shape research outcomes and enhance the applicability of empirical findings.</p><p>Many of the current guidelines are developed with a narrow focus, overlooking the diverse needs and experiences of adolescents across different cultural, ethnic, socioeconomic and geographic contexts. Nevertheless, because research most often reflects the views of researchers themselves, we can streamline our workflow by increasing the involvement of youth from diverse contexts, thereby increasing the quality of research projects aimed at addressing the disparities in adolescent health across these contexts.</p><p>The call for a more systematic approach to guideline development is both timely and imperative: adolescents should not only be participants in research but also active contributors to the design of guidelines and studies that affect them. Only this way can we create guidelines and produce results that are truly representative of the adolescent experience. Moreover, through social media platforms and other recruitment strategies that resonate with youth, ethical considerations that protect their personal information, training programmes that equip them with the skills to contribute meaningfully to research and proper power dynamics, we can combat the current challenges faced by aspiring adolescent researchers [<span>2</span>].</p><p>Improved guidelines that facilitate purposeful adolescent participation in health research can not only tap into a fresher perspective in the field but also have a positive impact on the quality of research and methodological approaches [<span>3</span>]. Involving youth in research can help us understand their perceptions of public health and barriers to healthy behaviours, pointing us in the right direction of developing more effective prevention and intervention programmes while empowering them to become advocates for their own health and well-being. This will simultaneously foster a new generation of young researchers, potentially accelerating advancements in the field of public health and ultimately leading to better outcomes for adolescents worldwide.</p><p>The author confirms sole responsibility for the preparation, writing and revision of this manuscript.</p><p>The author declar
{"title":"Youth on Board: Redefining Health Research for True Adolescent Involvement","authors":"Alina Yang","doi":"10.1111/hex.70016","DOIUrl":"10.1111/hex.70016","url":null,"abstract":"<p>I read with great interest the review article entitled “A Rapid Review of Guidelines on the Involvement of Adolescents in Health Research” [<span>1</span>]. The authors highlight the importance of meaningful adolescent participation in research, a principle I strongly endorse as a high school advocate engaged in cardiovascular disease (CVD) research. Adolescents, as a distinct and dynamic population, offer unique perspectives that are essential for the relevance and impact of health research, particularly in matters directly affecting them. However, as the review reveals, existing guidelines often fall short of providing comprehensive frameworks for youth involvement. This gap is concerning, given the potential for adolescents to significantly shape research outcomes and enhance the applicability of empirical findings.</p><p>Many of the current guidelines are developed with a narrow focus, overlooking the diverse needs and experiences of adolescents across different cultural, ethnic, socioeconomic and geographic contexts. Nevertheless, because research most often reflects the views of researchers themselves, we can streamline our workflow by increasing the involvement of youth from diverse contexts, thereby increasing the quality of research projects aimed at addressing the disparities in adolescent health across these contexts.</p><p>The call for a more systematic approach to guideline development is both timely and imperative: adolescents should not only be participants in research but also active contributors to the design of guidelines and studies that affect them. Only this way can we create guidelines and produce results that are truly representative of the adolescent experience. Moreover, through social media platforms and other recruitment strategies that resonate with youth, ethical considerations that protect their personal information, training programmes that equip them with the skills to contribute meaningfully to research and proper power dynamics, we can combat the current challenges faced by aspiring adolescent researchers [<span>2</span>].</p><p>Improved guidelines that facilitate purposeful adolescent participation in health research can not only tap into a fresher perspective in the field but also have a positive impact on the quality of research and methodological approaches [<span>3</span>]. Involving youth in research can help us understand their perceptions of public health and barriers to healthy behaviours, pointing us in the right direction of developing more effective prevention and intervention programmes while empowering them to become advocates for their own health and well-being. This will simultaneously foster a new generation of young researchers, potentially accelerating advancements in the field of public health and ultimately leading to better outcomes for adolescents worldwide.</p><p>The author confirms sole responsibility for the preparation, writing and revision of this manuscript.</p><p>The author declar","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 5","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-09-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11442328/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142332754","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>People with multiple sclerosis and gait impairment are particularly susceptible to facing restrictions in their participation. This study aims to investigate (a) which contextual factors within the framework of the International Classification of Functioning, Disability and Health (ICF) are relevant for participation from the perspective of people with multiple sclerosis and gait impairment who (intend to) use mobility assistive devices, and (b) how these contextual factors shape the subjective facets of participation, including a sense of connection, efficacy and meaning, based on the social identity approach to health and well-being.</p> </section> <section> <h3> Methods</h3> <p>We conducted a qualitative analysis on data gathered from four online focus group interviews, each involving four to six people with multiple sclerosis and gait impairment who (intend to) use mobility assistive devices (totalling <i>N</i> = 19), and 12 individual online interviews conducted with participants from the focus group interviews. The analysis followed the qualitative content analysis according to Kuckartz.</p> </section> <section> <h3> Results</h3> <p>Mobility assistive devices such as walkers, manual wheelchairs and electric wheelchairs/scooters were seen as facilitators that enabled participation in various life situations and enhanced a sense of efficacy by promoting independence. Challenges were encountered in relation to architectural barriers, pathways, weather conditions, public transportation and the lack of integral accessibility to services and systems. Although instrumental support could ease participation, it was also associated with an impaired sense of efficacy. Attitudes, particularly developing an understanding of the experiences of people with multiple sclerosis and gait impairment from others' perspectives, were considered important but often lacking, and discriminatory attitudes were experienced. On the level of personal factors, acceptance of both the mobility assistive devices and the disease itself were seen as facilitators for maintaining involvement in life situations.</p> </section> <section> <h3> Conclusions</h3> <p>This study extends the existing literature by shedding light on the interconnectedness of contextual factors within the ICF and various facets of perceived participation, including a sense of connection, efficacy and meaning. These findings provide valuable insights for stakeholders such as urban planners and policymakers in developing inclusive environments that enhance the overall
{"title":"Impact of Contextual Factors on the Perceived Participation of People With Multiple Sclerosis and Gait Impairment Using Mobility Assistive Devices: A Qualitative Analysis","authors":"Elise-Marie Dilger, Nadja Reeck, Dyon Hoekstra, Annett Thiele, Anna Levke Brütt","doi":"10.1111/hex.70033","DOIUrl":"10.1111/hex.70033","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>People with multiple sclerosis and gait impairment are particularly susceptible to facing restrictions in their participation. This study aims to investigate (a) which contextual factors within the framework of the International Classification of Functioning, Disability and Health (ICF) are relevant for participation from the perspective of people with multiple sclerosis and gait impairment who (intend to) use mobility assistive devices, and (b) how these contextual factors shape the subjective facets of participation, including a sense of connection, efficacy and meaning, based on the social identity approach to health and well-being.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>We conducted a qualitative analysis on data gathered from four online focus group interviews, each involving four to six people with multiple sclerosis and gait impairment who (intend to) use mobility assistive devices (totalling <i>N</i> = 19), and 12 individual online interviews conducted with participants from the focus group interviews. The analysis followed the qualitative content analysis according to Kuckartz.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Mobility assistive devices such as walkers, manual wheelchairs and electric wheelchairs/scooters were seen as facilitators that enabled participation in various life situations and enhanced a sense of efficacy by promoting independence. Challenges were encountered in relation to architectural barriers, pathways, weather conditions, public transportation and the lack of integral accessibility to services and systems. Although instrumental support could ease participation, it was also associated with an impaired sense of efficacy. Attitudes, particularly developing an understanding of the experiences of people with multiple sclerosis and gait impairment from others' perspectives, were considered important but often lacking, and discriminatory attitudes were experienced. On the level of personal factors, acceptance of both the mobility assistive devices and the disease itself were seen as facilitators for maintaining involvement in life situations.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>This study extends the existing literature by shedding light on the interconnectedness of contextual factors within the ICF and various facets of perceived participation, including a sense of connection, efficacy and meaning. These findings provide valuable insights for stakeholders such as urban planners and policymakers in developing inclusive environments that enhance the overall","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 5","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-09-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11437357/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142332751","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}
Emilee Kim Ming Ong, Carolyn Murray, Susan Hillier, Ryan Causby
<div> <section> <h3> Introduction</h3> <p>Having a lower extremity amputation is a life-changing decision for people living with a diabetes-related foot ulcer. Although previous research has described both positive and negative lifestyle and function outcomes of diabetes-related amputations, limited research has been conducted on the decision-making processes leading up to the amputation. This study aimed to explore the perspectives of persons, healthcare practitioners and experts (including academics and specialists) on decision-making for people with a diabetes-related foot ulcer who may require a non-emergency amputation.</p> </section> <section> <h3> Methods</h3> <p>A qualitative descriptive study using semi-structured interviews enabled people to share their thought processes when making decisions for amputation. Twenty-six participants were interviewed, including nine people with a diabetes-related foot ulcer or amputation, nine health practitioners and eight experts located across five countries. There were 13 female and 13 male participants. Thematic analysis was used for data analysis.</p> </section> <section> <h3> Results</h3> <p>Four themes described the decision-making considerations for amputation: ‘Balancing the evidence in decision-making’, ‘Trust, respect and timing of conversations inform decision-making’, ‘Tailoring decisions for individual circumstance’ and ‘Reaching the tipping point in decisions for the future’. Work commitments, functional and lifestyle impacts of amputation, the presence of support networks and clinical wound features formed the evidence for a decision for amputation.</p> </section> <section> <h3> Conclusion</h3> <p>Understanding quality of life needs ensured that decisions for amputation addressed expectations and lifestyle needs. Living with a diabetes-related foot ulcer presented daily challenges that pushed people to a tipping point, at which amputation was considered to overcome these hardships and enable them to move on to the next chapter of their life. Further research is required to understand how person-centred factors can be better incorporated alongside objective clinical assessments in decisions for amputation.</p> </section> <section> <h3> Patient or Public Contribution</h3> <p>People with diabetes-related foot ulcers, health practitioners and experts shared their perspectives on the decision-making process for amputation through one-to-one interviews. Consideration of the person in the context
{"title":"‘Leaving the Door Open’: Perspectives on Decision-Making for Non-Emergency Diabetes-Related Amputation","authors":"Emilee Kim Ming Ong, Carolyn Murray, Susan Hillier, Ryan Causby","doi":"10.1111/hex.70043","DOIUrl":"https://doi.org/10.1111/hex.70043","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Having a lower extremity amputation is a life-changing decision for people living with a diabetes-related foot ulcer. Although previous research has described both positive and negative lifestyle and function outcomes of diabetes-related amputations, limited research has been conducted on the decision-making processes leading up to the amputation. This study aimed to explore the perspectives of persons, healthcare practitioners and experts (including academics and specialists) on decision-making for people with a diabetes-related foot ulcer who may require a non-emergency amputation.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A qualitative descriptive study using semi-structured interviews enabled people to share their thought processes when making decisions for amputation. Twenty-six participants were interviewed, including nine people with a diabetes-related foot ulcer or amputation, nine health practitioners and eight experts located across five countries. There were 13 female and 13 male participants. Thematic analysis was used for data analysis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Four themes described the decision-making considerations for amputation: ‘Balancing the evidence in decision-making’, ‘Trust, respect and timing of conversations inform decision-making’, ‘Tailoring decisions for individual circumstance’ and ‘Reaching the tipping point in decisions for the future’. Work commitments, functional and lifestyle impacts of amputation, the presence of support networks and clinical wound features formed the evidence for a decision for amputation.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Understanding quality of life needs ensured that decisions for amputation addressed expectations and lifestyle needs. Living with a diabetes-related foot ulcer presented daily challenges that pushed people to a tipping point, at which amputation was considered to overcome these hardships and enable them to move on to the next chapter of their life. Further research is required to understand how person-centred factors can be better incorporated alongside objective clinical assessments in decisions for amputation.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>People with diabetes-related foot ulcers, health practitioners and experts shared their perspectives on the decision-making process for amputation through one-to-one interviews. Consideration of the person in the context ","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 5","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-09-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70043","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142324671","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}
Geraldine O'Callaghan, Martin Fahy, Patricia Hall, Deirdre McCartan, Peter Langhorne, Rose Galvin, Frances Horgan
<div> <section> <h3> Background</h3> <p>People with stroke and their families face numerous challenges as they leave hospital to return home, often experiencing multifaceted unmet needs and feelings of abandonment. The essential elements of an intervention intended to support transition-to-home after stroke are unclear.</p> </section> <section> <h3> Objective</h3> <p>The aim of the project was to engage in a co-design process to identify the key components of a pragmatic intervention to inform a transition-to-home support pathway following stroke.</p> </section> <section> <h3> Materials and Methods</h3> <p>The study was conducted using a co-design process engaging multiple stakeholders, including 12 people with stroke, 6 caregivers, 26 healthcare professionals and 6 individuals from stroke organisations in a series of three workshops, facilitated by the primary researcher, a wider team of researchers and an individual with lived experience of stroke. World Café methodology and Liberating Structures facilitation techniques were adapted to meet the aim of the workshops. Data collection involved observations during workshops, followed by summarising of findings and reaching group consensus agreement on outputs. Facilitated consensus on a prioritisation task resulted in the final output.</p> </section> <section> <h3> Results</h3> <p>The co-design group identified 10 key intervention components of a transition-to-home support pathway following stroke. These components focussed on enhancing collaboration, streamlining transition processes and facilitating post-discharge support. While a stroke coordinator was considered a top priority, increased cross-setting information sharing and community in-reach, where community-based healthcare staff extended their services into hospital settings to provide continuity care, were considered most feasible to implement.</p> </section> <section> <h3> Conclusion</h3> <p>The co-design approach, involving a multi-stakeholder group and strengthened by patient and public involvement, ensured that the identified transition-to-home intervention components are meaningful and relevant for people with stroke and their families. Further co-design workshops are required to refine, and feasibility test the components for generalisability within the wider Irish healthcare setting.</p> </section> <section> <h3> Patient or Public Contribution</h3>
{"title":"From Hospital to Home: Applying a Co-Design Approach to Determine the Key Components of an Intervention to Support Transition-To-Home After Stroke","authors":"Geraldine O'Callaghan, Martin Fahy, Patricia Hall, Deirdre McCartan, Peter Langhorne, Rose Galvin, Frances Horgan","doi":"10.1111/hex.70040","DOIUrl":"10.1111/hex.70040","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>People with stroke and their families face numerous challenges as they leave hospital to return home, often experiencing multifaceted unmet needs and feelings of abandonment. The essential elements of an intervention intended to support transition-to-home after stroke are unclear.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Objective</h3>\u0000 \u0000 <p>The aim of the project was to engage in a co-design process to identify the key components of a pragmatic intervention to inform a transition-to-home support pathway following stroke.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Materials and Methods</h3>\u0000 \u0000 <p>The study was conducted using a co-design process engaging multiple stakeholders, including 12 people with stroke, 6 caregivers, 26 healthcare professionals and 6 individuals from stroke organisations in a series of three workshops, facilitated by the primary researcher, a wider team of researchers and an individual with lived experience of stroke. World Café methodology and Liberating Structures facilitation techniques were adapted to meet the aim of the workshops. Data collection involved observations during workshops, followed by summarising of findings and reaching group consensus agreement on outputs. Facilitated consensus on a prioritisation task resulted in the final output.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The co-design group identified 10 key intervention components of a transition-to-home support pathway following stroke. These components focussed on enhancing collaboration, streamlining transition processes and facilitating post-discharge support. While a stroke coordinator was considered a top priority, increased cross-setting information sharing and community in-reach, where community-based healthcare staff extended their services into hospital settings to provide continuity care, were considered most feasible to implement.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>The co-design approach, involving a multi-stakeholder group and strengthened by patient and public involvement, ensured that the identified transition-to-home intervention components are meaningful and relevant for people with stroke and their families. Further co-design workshops are required to refine, and feasibility test the components for generalisability within the wider Irish healthcare setting.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 5","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-09-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70040","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142309169","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}
Natasha Layton, Catherine Devanny, Keith Hill, Kate Swaffer, Grant Russell, Lee-Fay Low, Den-Ching A. Lee, Monica Cations, Helen Skouteris, Claire MC O'Connor, Taya A. Collyer, Barbara Barbosa Neves, Nadine E. Andrew, Terry Haines, Velandai K. Srikanth, Alan Petersen, Michele L. Callisaya
<div> <section> <h3> Introduction</h3> <p>People with dementia of all ages have a human right to equal access to quality health care. Despite evidence regarding its effectiveness, many people living with dementia are unable to access rehabilitation for promoting function and quality of life. Conducted in Australia, this study was designed to (1) explore barriers to access to dementia rehabilitation and (2) identify solutions that improve access to rehabilitation.</p> </section> <section> <h3> Methods</h3> <p>People living with dementia (<i>n</i> = 5) and care partners (<i>n</i> = 8) and health professionals (<i>n</i> = 13) were recruited nationally. Experience-based codesign across three virtual workshops was used to understand barriers and design solutions to improve access to rehabilitation treatments. Socio-ecological analyses, using the Levesque Access to Health care framework, were applied to findings regarding barriers and to aid selection of solutions.</p> </section> <section> <h3> Results</h3> <p>There was high attendance (92.3%) across the three workshops. Barriers were identified at a user level (including lack of knowledge, transport, cost and difficulty navigating the health, aged care and disability sectors) and health service level (including health professional low dementia knowledge and negative attitudes, inequitable funding models and non-existent or fragmented services). Solutions focused on widespread dementia education and training, including ensuring that people with dementia and their care partners know about rehabilitation therapies and that health professionals, aged care and disability co-ordinators know how to refer to and deliver rehabilitation interventions. Dementia care navigators, changes to Australia's public funding models and specific dementia rehabilitation programmes were also recommended.</p> </section> <section> <h3> Conclusions</h3> <p>Barriers to accessing rehabilitation for people with dementia exist at multiple levels and will require a whole-community and systems approach to ensure change.</p> </section> <section> <h3> Patient or Public Contribution</h3> <p>People with living experience (preferred term by those involved) were involved at two levels within this research. A Chief Investigator living with dementia was involved in the design of the study and writing of the manuscript. People with living experience, care partners and service providers were participants in the codesign process to identify barri
{"title":"The Right to Rehabilitation for People With Dementia: A Codesign Approach to Barriers and Solutions","authors":"Natasha Layton, Catherine Devanny, Keith Hill, Kate Swaffer, Grant Russell, Lee-Fay Low, Den-Ching A. Lee, Monica Cations, Helen Skouteris, Claire MC O'Connor, Taya A. Collyer, Barbara Barbosa Neves, Nadine E. Andrew, Terry Haines, Velandai K. Srikanth, Alan Petersen, Michele L. Callisaya","doi":"10.1111/hex.70036","DOIUrl":"https://doi.org/10.1111/hex.70036","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>People with dementia of all ages have a human right to equal access to quality health care. Despite evidence regarding its effectiveness, many people living with dementia are unable to access rehabilitation for promoting function and quality of life. Conducted in Australia, this study was designed to (1) explore barriers to access to dementia rehabilitation and (2) identify solutions that improve access to rehabilitation.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>People living with dementia (<i>n</i> = 5) and care partners (<i>n</i> = 8) and health professionals (<i>n</i> = 13) were recruited nationally. Experience-based codesign across three virtual workshops was used to understand barriers and design solutions to improve access to rehabilitation treatments. Socio-ecological analyses, using the Levesque Access to Health care framework, were applied to findings regarding barriers and to aid selection of solutions.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>There was high attendance (92.3%) across the three workshops. Barriers were identified at a user level (including lack of knowledge, transport, cost and difficulty navigating the health, aged care and disability sectors) and health service level (including health professional low dementia knowledge and negative attitudes, inequitable funding models and non-existent or fragmented services). Solutions focused on widespread dementia education and training, including ensuring that people with dementia and their care partners know about rehabilitation therapies and that health professionals, aged care and disability co-ordinators know how to refer to and deliver rehabilitation interventions. Dementia care navigators, changes to Australia's public funding models and specific dementia rehabilitation programmes were also recommended.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Barriers to accessing rehabilitation for people with dementia exist at multiple levels and will require a whole-community and systems approach to ensure change.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>People with living experience (preferred term by those involved) were involved at two levels within this research. A Chief Investigator living with dementia was involved in the design of the study and writing of the manuscript. People with living experience, care partners and service providers were participants in the codesign process to identify barri","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"27 5","pages":""},"PeriodicalIF":3.0,"publicationDate":"2024-09-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70036","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142320729","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}
Gillian Mason, Karen Ribbons, Lucy Bailey, Adrian O'Malley, Tracy Ward, Stephen Ward, Michael Pollack, Frederick R. Walker, Michael Nilsson, Nicolette Hodyl
<div> <section> <h3> Introduction</h3> <p>Improved access to rehabilitation is highlighted as a key pathway to achieving the World Health Organisation's (WHO) goal of ensuring healthy lives and promoting well-being for all (Sustainable Development Goal 3). This article is the second in a two-part series outlining the findings from the <i>Rehabilitation Choices</i> study, which aimed to identify how health professionals and consumers in Australia are informed to make decisions about rehabilitation, and their experience with barriers and enablers to accessing that rehabilitation. In this study, we present the perspectives of consumers with different health conditions and a range of experiences with rehabilitation services.</p> </section> <section> <h3> Methods</h3> <p>This was a qualitative study using focus groups and semi-structured interviews. People with self-reported lived experience of rehabilitation and carers were recruited using maximum variation sampling. Thematic analysis of data was conducted using an inductive approach.</p> </section> <section> <h3> Results</h3> <p>Fifty-six consumers with diverse lived experiences of rehabilitation (19–80 years, 49 patients, 7 carers) participated in focus groups and interviews to discuss how they sourced information about rehabilitation and their experiences of what made it hard or easy to access rehabilitative care to meet their needs. Four themes were produced from the data: (1) service-centricity of options limits access, (2) access is the patient's responsibility, (3) enabling decision-making about rehabilitation with appropriate information and (4) provision of a psychologically safe environment.</p> </section> <section> <h3> Conclusions</h3> <p>Any planned (re)design of services to improve consumer access to rehabilitation should consider the themes identified in this study. This will ensure that consumers are provided with rehabilitation options that suit their holistic and unique needs beyond consideration of their medical diagnoses, and are actively supported to navigate this access, provided with information to help them make informed choices and provided a psychologically safe environment to engage effectively with rehabilitation.</p> </section> <section> <h3> Patient or Public Contribution</h3> <p>Three consumer research partners with lived experience of rehabilitation as patients or carers were core team members. They were involved in the design and implementation of the recruitment and co
导言：世界卫生组织（WHO）提出了 "确保人人享有健康生活并促进其福祉 "的目标（可持续发展目标 3），并强调改善康复服务是实现这一目标的关键途径。本文是概述 "康复选择 "研究结果的两部分系列文章中的第二篇，该研究旨在确定澳大利亚的医疗专业人员和消费者如何在知情的情况下做出有关康复的决定，以及他们在获得康复的障碍和促进因素方面的经验。在这项研究中，我们介绍了不同健康状况的消费者的观点以及他们在康复服务方面的各种经验：这是一项采用焦点小组和半结构化访谈的定性研究。采用最大变异抽样法招募了自述有康复生活经历的人和照顾者。采用归纳法对数据进行主题分析：56名具有不同康复生活经历的消费者（19-80岁，49名患者，7名护理者）参加了焦点小组和访谈，讨论了他们如何获得康复信息，以及他们在获得康复护理以满足其需求时遇到的困难和困难。从数据中得出了四个主题：（1）以服务为中心的选择限制了患者获得康复护理的机会；（2）获得康复护理是患者的责任；（3）通过适当的信息帮助患者做出康复决策；（4）提供心理安全的环境：任何旨在改善消费者获得康复服务的计划（重新）设计都应考虑本研究中确定的主题。这将确保为消费者提供适合其整体和独特需求的康复选择，而不只是考虑他们的医疗诊断，并积极支持他们获得这种机会，为他们提供信息以帮助他们做出明智的选择，并为他们提供心理安全的环境以有效地参与康复：患者或公众的贡献：团队的核心成员中有三位消费者研究伙伴，他们作为患者或护理者，拥有康复方面的实际经验。他们参与了招募和沟通策略的设计和实施、访谈方法和讨论指南的设计，对研究结果的解释和背景分析以及本手稿的撰写做出了贡献，并被列为共同作者（A. O., T. W. 和 S. W. ）。
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