Eilish A. Burke, Rachael Carroll, Maire O'Dwyer, J Bernard Walsh, Philip McCallion, Mary McCarron
{"title":"Ageing, osteoporosis and intellectual disability; risks differ, and diagnosis can be missed","authors":"Eilish A. Burke, Rachael Carroll, Maire O'Dwyer, J Bernard Walsh, Philip McCallion, Mary McCarron","doi":"10.1111/bld.12598","DOIUrl":"10.1111/bld.12598","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>People with intellectual disability often present atypically for various health conditions, making it challenging to identify concerns, particularly when communication challenges are also considered. Additionally, they may face barriers to healthcare access, resulting in many conditions going unnoticed. Health screening inequities are also evident in this population, and osteoporosis, a silent condition often only diagnosed postfracture, requires screening; however, if this does not happen, it may result in unnecessary fracture. Therefore the aim of this study is to identify predictors of osteoporosis in older adults with intellectual disability and examine potential inequity in the diagnosis of the condition.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>The study used data from the Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (IDS-TILDA). Bone quality was measured using quantitative ultrasound (QUS). Logistic regression was performed to identify significant predictors of poor bone quality, including chronic health conditions, dietary intake, medication use and activity levels.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Out of 575 participants who completed QUS, osteoporosis prevalence was objectively measured at 41%, with a further 33.2% measured within the osteopenic range, but less than 2 in 10 had a doctor's diagnosis of osteoporosis. Reported Dual-Energy X-ray Absorptiometry screening uptake was low at 18.2%. Three major predictor variables of osteoporosis and osteopenia were found significant: difficulty walking 100 yards, taking antiepileptic drugs medicines and taking proton pump inhibitors. The model achieved an overall classification accuracy of 70.8% for osteopenia and 72.5% for identifying osteoporosis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>The study highlights the different risk factors in people with intellectual disability, the potential for missed diagnoses and the likelihood there is inadequate screening. There is an urgent need for robust risk assessment and reasonable adjustments to ensure equitable screening and targeted preventive strategies. Clinicians must consider specific concerns for this population to avoid missed diagnoses and reduce the adverse effects of osteoporosis/osteopenia, such as an increased risk of fragility fractures.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 3","pages":"562-576"},"PeriodicalIF":1.2,"publicationDate":"2024-04-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12598","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140584382","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Storytelling, Special Needs and Disabilities: Practical Approaches for Children and Adults By Nicola Grove, Routledge. 2022. ISBN: 9780367746858","authors":"Gareth Smith, Charlotte Parkhouse","doi":"10.1111/bld.12596","DOIUrl":"10.1111/bld.12596","url":null,"abstract":"","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 4","pages":"709-710"},"PeriodicalIF":1.2,"publicationDate":"2024-04-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140584287","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Megan Stock, Mark Mulholland, Vivien Cooper, Annabel Head, Sam Prowse, David Wellsted, Silvana E. Mengoni, Louisa Rhodes, Helen Ellis-Caird
{"title":"‘The whole thing is beyond stress’: Family perspectives on the experience of hospitalisation through to discharge for individuals with severe learning disabilities and complex needs","authors":"Megan Stock, Mark Mulholland, Vivien Cooper, Annabel Head, Sam Prowse, David Wellsted, Silvana E. Mengoni, Louisa Rhodes, Helen Ellis-Caird","doi":"10.1111/bld.12595","DOIUrl":"10.1111/bld.12595","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>People with severe learning disabilities and complex needs are more likely to experience delayed discharge from hospital; however, there is little research into their experience in hospital and as they move out as part of the Transforming Care Programme.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Six family members of people with complex needs who had moved out of hospital took part in four focus groups co-facilitated with an expert-by-experience consultant. Participants' relatives had hospital admissions that ranged from 6 weeks to 11 years. Transcripts were analysed using reflexive thematic analysis. Additional reflections are included from an expert-by-experience consultant to capture their unique perspective.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Family members reported stories of abuse in hospital and parallel experiences of institutionalisation and trauma, resulting in long-lasting impacts on themselves and their relative. Family members felt let down and undervalued by professionals. They described relief when their relatives moved out of hospital, but there were on-going difficulties accessing the right support in the community and so stability felt fragile.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Key recommendations to support community living include respecting family members' expertise, improving partnership working and offering psychological support for family members and people with complex needs post-discharge.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 4","pages":"633-643"},"PeriodicalIF":1.2,"publicationDate":"2024-03-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12595","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140368544","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Exploring the inequalities of women with learning disabilities deciding to attend and then accessing cervical and breast cancer screening, using the Social Ecological Model","authors":"Kate Sykes, Grant J. McGeechan, Emma L. Giles","doi":"10.1111/bld.12587","DOIUrl":"10.1111/bld.12587","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Women with learning disabilities are less likely to access cervical and breast cancer screening when compared to the general population. The Social Ecological Model (SEM) was used to examine the inequalities faced by women with learning disabilities in accessing cervical and breast cancer screening in England, UK.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>The findings from a qualitative systematic review and a Q methodology study were triangulated. Framework analysis, in line with the SEM, was used to develop an integrated set of findings.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Women with learning disabilities may lack knowledge of cancer symptoms, and cancer screening, as well as being scared about the process and getting the results. The attitudes of family and paid carers towards screening may influence women with learning disabilities' decisions as to whether screening is seen as favourable; support and training may ensure unbiased perspectives. Barriers were also associated with how cancer screening programmes are designed, such as postal invitations which assumes an ability to read. In addition, screening staff need to be aware of the general needs of people with learning disabilities, such as the benefits of easy-to-read documents. Lastly, multidisciplinary working is required so reasonable adjustments can be embedded into cancer screening pathways.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>This article highlights multiple methods to reduce the inequalities faced by women with learning disabilities, which can be achieved through reasonable adjustments. Embedding reasonable adjustments can support women with learning disabilities in making an informed decision and accessing screening if they choose to. This may result in women with learning disabilities getting a timely cancer diagnosis.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 3","pages":"538-548"},"PeriodicalIF":1.2,"publicationDate":"2024-03-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12587","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140154727","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Sarah Earle, Susan Ledger, Victoria Newton, Lorna Rouse, Elizabeth Tilley
{"title":"Menstruation and learning disability across the life course: Using a two-part scoping exercise to co-produce research priorities","authors":"Sarah Earle, Susan Ledger, Victoria Newton, Lorna Rouse, Elizabeth Tilley","doi":"10.1111/bld.12592","DOIUrl":"10.1111/bld.12592","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Across the life course, women and girls with learning disabilities and their carers report difficulties in accessing information and support with menstruation, yet their experiences are often overlooked in initiatives to improve menstrual health and wellbeing. Our aim was to collaborate with women with learning disabilities to co-produce future research priorities in a UK context.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>We undertook a two-part scoping exercise to explore what is known about this topic from a life course perspective, beginning pre-menarche and extending to post-menopause support. This combined a rapid scoping review of the literature since 1980 with a stakeholder consultation where people with learning disabilities, family carers, advocacy groups and staff working across education, health and social care were invited to share their experiences of menstruation support.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>UK and international literature provided insight across five narrative themes. Seventy stakeholders took part in our consultation, enabling the identification of five key themes. Findings across both highlight examples of supportive practice and valued resources alongside enduring health inequalities and barriers to menstruation support faced by women and girls with learning disabilities across the life course.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Our scoping exercise identified multiple gaps in research and practice, ongoing reproductive health inequalities and a need for improved access to peer support, resources and training that take a life course approach. The scoping exercise indicates the need for further empirical research on menstruation and learning disability, with a particular focus on collating people's lived experiences.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 3","pages":"524-537"},"PeriodicalIF":1.2,"publicationDate":"2024-03-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12592","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140154718","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Marek Karas, Donna O'Brien, Lance Campbell, Rebecca Lunness, Joanne Kennedy, Grace McGill, Stephen Kill, Lisa Donaldson
{"title":"The role of lived experience eye care champions in improving awareness and access to eye care services for people with learning disabilities and/or autism","authors":"Marek Karas, Donna O'Brien, Lance Campbell, Rebecca Lunness, Joanne Kennedy, Grace McGill, Stephen Kill, Lisa Donaldson","doi":"10.1111/bld.12594","DOIUrl":"10.1111/bld.12594","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Documented inequalities in access to eye care for people with learning disabilities and/or autism are caused by poor uptake of primary eye care services, poor identification of eye problems, lack of signposting and reasonable adjustments of existing services, concerns about costs of care and the low priority historically given to these issues in eye care policy at a regional and national level. In 2019, the charity SeeAbility employed four eye care champions (ECCs) with lived experience of learning disability and/or autism to work in local communities in London and the Northwest of England. They provided peer-to-peer support on understanding the need for good eye health and engaged with policy makers, and learning disability, autism and eye care professionals at the local, regional and national levels to influence both the clinical practice of individual practitioners (within existing service/pathway models) and more widely to influence the commissioning of the Easy Eye Care pathway. This study explores the experiences of these ECCs.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>The study was conducted in April and May 2023. A case study approach was used to describe the experiences of the ECCs from March 2019 to March 2023. Data from structured interviews with the four ECCs and workload analysis were triangulated to provide a multifaceted understanding of this novel health promotion project.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>The ECCs found the role useful and reported that confidence in their practice and impact grew with time but they required ongoing support in the role. A good understanding of the promotional messages was reported. Developing a good network of contacts at an early stage, both people with learning disabilities and healthcare professionals, was key. Relationships with professionals were supportive and positive and a positive emotive response to their lived experience was reported in these interactions.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>From the perspective of the ECCs, the role is useful and beneficial. The work suggests some key recommendations for future development which include planning to build networks, support in presentation and communications skills and defining key messages and knowledge. Confidence of the ECCs builds with time in the role but also needs support the emotive impact of their lived experiences on audiences is highlighted. There is a need to evaluate how the programme is perceived by those who interact with it and how it changes behaviours","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 3","pages":"489-499"},"PeriodicalIF":1.2,"publicationDate":"2024-03-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12594","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140154651","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Yona Lunsky, Tiziana Volpe, Laura St. John, Anupam Thakur, Johanna Lake, the H-CARDD COVID Program Team
{"title":"Evaluation of a co-designed Health Check-in for adults with intellectual and developmental disabilities and family caregivers to support pandemic recovery","authors":"Yona Lunsky, Tiziana Volpe, Laura St. John, Anupam Thakur, Johanna Lake, the H-CARDD COVID Program Team","doi":"10.1111/bld.12593","DOIUrl":"10.1111/bld.12593","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>The COVID-19 pandemic has brought about disruptions in healthcare for adults with intellectual and developmental disabilities. There is a need to explore ways to promote proactive healthcare and better prepare individuals for healthcare encounters.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A co-designed tool, the COVID Check-in Tool, was introduced as part of a virtual health education programme to encourage proactive healthcare. Implementation of this Health Check-in was evaluated with 36 adults with intellectual and developmental disabilities and 96 family caregivers who completed the programme using surveys, structured interviews and focus groups.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Forty-four percent of participants engaged in the Health Check-in process, resulting in many reported benefits for those who participated. However, there were also barriers to initiating the Check-in, along with challenges using the COVID Check-in Tool, according to both the adults with disabilities who were interviewed and the family caregivers.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The study underscores the importance of considering ways to integrate tools into routine healthcare practices, to facilitate improved healthcare delivery for people with intellectual and developmental disabilities during pandemic recovery efforts. As well, involving people with lived experience in the development and implementation of healthcare resources is critical.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 3","pages":"512-523"},"PeriodicalIF":1.2,"publicationDate":"2024-03-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12593","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140070100","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Mary Bottomley, Jodie Bradley, Lisa Clark, Bryan Collis, Bojana Daw Srdanovic, Victoria Farnsworth, Annie Ferguson, Dan Goodley, Andrew Fox, Nikita K. Hayden, Charlotte Lawthom, Rebecca Lawthom, Claudia Magwood, Robert McLean, Ian Middleton, Alison Owen, Matty Prothero, Simon Rice, Simon Richards, Katherine Runswick-Cole, Kelly Scargill, Rohit Shankar, Toni Ann Wood
{"title":"Co-producing ethics guidelines together with people with learning disabilities","authors":"Mary Bottomley, Jodie Bradley, Lisa Clark, Bryan Collis, Bojana Daw Srdanovic, Victoria Farnsworth, Annie Ferguson, Dan Goodley, Andrew Fox, Nikita K. Hayden, Charlotte Lawthom, Rebecca Lawthom, Claudia Magwood, Robert McLean, Ian Middleton, Alison Owen, Matty Prothero, Simon Rice, Simon Richards, Katherine Runswick-Cole, Kelly Scargill, Rohit Shankar, Toni Ann Wood","doi":"10.1111/bld.12590","DOIUrl":"10.1111/bld.12590","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>We are a research team of clinical, academic and advocacy-based researchers with and without learning disabilities, working on the <i>Humanising Healthcare</i> (for people with learning disabilities) project. The project is dedicated to finding and sharing healthcare practices that enhance the lives of people with learning disabilities. As part of our ethics applications to access National Health Service study sites for fieldwork, we worked together to write guiding principles for co-producing research ethics with researchers with learning disabilities. In this paper, we introduce these Participatory Ethics Good Practice Guidelines and reflect on our collaboration.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>We reflect on developing the Participatory Ethics Good Practice Guidelines. These guidelines were developed during online co-production meetings with our full research team, including advocacy-based organisation researchers, clinical researchers and university researchers. We considered consent, understanding research, and understanding research methods during the development of these Guidelines.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>We present ten guidelines for co-producing research with people with learning disabilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Our findings may be helpful to researchers with learning disabilities, university and clinical researchers, funders, and those who work in research governance (e.g., ethics committees and university research departments).</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 4","pages":"611-632"},"PeriodicalIF":1.2,"publicationDate":"2024-03-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12590","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140069938","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Ann Fudge Schormans, Stephanie Baker Collins, Heather Allan, D. O'Neil Allen, Nathan Gray
{"title":"Homeless youth with intellectual disabilities: Precarious lives and health inequalities","authors":"Ann Fudge Schormans, Stephanie Baker Collins, Heather Allan, D. O'Neil Allen, Nathan Gray","doi":"10.1111/bld.12588","DOIUrl":"10.1111/bld.12588","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Youth with intellectual disabilities experiencing homelessness are invisible within multiple service sectors. We know little about their experiences of homelessness, or the impacts of such on the social and physical health and well-being.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>We used quantitative and qualitative methods to measure prevalence and learn from key informants and homeless youth with intellectual disabilities about factors leading to and sustaining homelessness, and the implications of such on their social, physical, and mental health and well-being. The project involved seven co-researchers with intellectual disabilities and experience of youth homelessness in research design, data collection, analysis, and dissemination. We created Forum Theatre scenes that creatively represent the findings of the project. In this paper we share one of those scenes, as well as the recommendations three co-researchers with intellectual disabilities have for improving support to homeless youth with intellectual disabilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Lack of awareness of and about homeless youth with intellectual disabilities, combined with siloed ways of working by involved sectors, results in significant disadvantage and health inequities for youth. Also revealed was the likelihood this would continue given existing obstacles to accessing appropriate housing and supports to exit homelessness.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Services providers, policy makers and representatives of the involved sectors need to recognize and acknowledge homeless youth with intellectual disabilities and take responsibility for learning and working together to develop integrated and responsive approaches to effectively supporting them.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 3","pages":"477-488"},"PeriodicalIF":1.2,"publicationDate":"2024-03-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12588","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140055748","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Francesca Beeken, Dafni Katsampa, Moureen Duxbury, Helen-Ellis Caird, Annabel Head, Sam Prowse, David Wellsted, Pashtana Zormati, Silvana E. Mengoni, Louisa Rhodes
{"title":"Mapping stakeholders to maximise the impact of research on health inequalities for people with learning disabilities: The development of a framework for the Making Positive Moves study","authors":"Francesca Beeken, Dafni Katsampa, Moureen Duxbury, Helen-Ellis Caird, Annabel Head, Sam Prowse, David Wellsted, Pashtana Zormati, Silvana E. Mengoni, Louisa Rhodes","doi":"10.1111/bld.12591","DOIUrl":"10.1111/bld.12591","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>People with learning disabilities experience health and social inequalities, and research that could improve health services may not be implemented in real-life settings. Building stakeholder networks that can share and implement research findings may address this. This paper presents a framework for building a stakeholder network that maximises the likelihood of research recommendations being implemented in practice. This was developed as part of the ‘Making Positive Moves’ (MPM) study, which explores the experiences of people with learning disabilities following discharge from a residential stay within a hospital inpatient setting.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>We reviewed the literature on existing theoretical frameworks to support the development of a model for dissemination of the MPM findings. Stakeholder categories were identified through consultation with the MPM researchers, experts by experience and the steering group and a hub and spoke model to represent all stakeholder categories was created. These categories include person moving; family of the person moving; specialist schools; social care; care providers; regulators; third sector organisations; policy organisations; academic community; and NHS professionals. After establishing the categories, we consulted with people with learning disabilities and other stakeholders and conducted online searches to create a stakeholder database. Through information gathering and direct contact with stakeholders, we assessed levels of interest, power and engagement to determine which stakeholders to prioritise in our dissemination activities. The Stakeholder Wheel was created to present the data captured within the database and engagement profiles in an illustrative way.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>We use two stakeholder sub-categories, user-led organisations and care providers, to demonstrate the methodological approach. The examples illustrate how a scoring system helped us to identify high-priority stakeholders who we then contacted to collaborate within developing our dissemination strategy to maximise the impact of the MPM research findings.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>We developed a framework to map stakeholders for the MPM study and enable targeted dissemination to increase the impact of the research. This approach has the potential to reduce health inequalities among people with learning disabilities by increasing the awareness of and ability to implement evidence-based recommendations in real-lif","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 3","pages":"443-455"},"PeriodicalIF":1.2,"publicationDate":"2024-03-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12591","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140055750","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}