Coproduction is a fast-developing approach to patient involvement. It entails health and social care services users working as equals in partnership with providers and other public institutions to produce novel research and information, usually aimed at the improvement of service planning and delivery.
Methods
This paper presents two real-life examples of attempted coproduction with a group of men with learning disabilities in England. The first case study concerns the piloting and assessment of a ‘user-friendly’ version of a local authority's ‘vision statement’. The second explores an attempt to secure funding to develop and evaluate a community intervention with and for people with learning disabilities.
Findings
Together, these portraits capture two important and intertwined problems that afflict the field of coproduction: namely, the drive to create fast results and the challenges of time and resource allocation that service users and professionals face whenever they attempt to coproduce work in a meaningful way.
Conclusions
The paper concludes with some suggestions for how policy and practice might seek to address these issues in the future.
{"title":"Hard to reach, or struggling to be heard? Real-life experience of coproduction with people with learning disabilities","authors":"David Dobel-Ober, Paul Moloney, Sarah Millichap","doi":"10.1111/bld.12600","DOIUrl":"10.1111/bld.12600","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Coproduction is a fast-developing approach to patient involvement. It entails health and social care services users working as equals in partnership with providers and other public institutions to produce novel research and information, usually aimed at the improvement of service planning and delivery.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>This paper presents two real-life examples of attempted coproduction with a group of men with learning disabilities in England. The first case study concerns the piloting and assessment of a ‘user-friendly’ version of a local authority's ‘vision statement’. The second explores an attempt to secure funding to develop and evaluate a community intervention with and for people with learning disabilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Together, these portraits capture two important and intertwined problems that afflict the field of coproduction: namely, the drive to create fast results and the challenges of time and resource allocation that service users and professionals face whenever they attempt to coproduce work in a meaningful way.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The paper concludes with some suggestions for how policy and practice might seek to address these issues in the future.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 4","pages":"656-665"},"PeriodicalIF":1.2,"publicationDate":"2024-05-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140827983","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}
People with intellectual disabilities living in group homes often have complex health needs, are high health service users and need support from their service provider to access health services. In Australia, little is known about the types and amounts of these supports.
Methods
A case study was conducted on a large Western Australian disability provider of group homes to 160 people with intellectual disability. Over an 18-month period, including during the COVID-19 pandemic, the study quantified health service use in hospital- and community-based settings, ways by which the person was supported to access health care and the impact on other people supported by the provider. Economic costs of supporting access to health services were estimated.
Findings
Overall, the disability provider supported 160 people in accessing health services an average of 23 times each (n = 3617, median = 20, interquartile range = 10–33) over the 18 months. Support included staff attending with the person (96%), following up with guardian/decision-maker (50%), additional resourcing via overtime or staff backfills (6%) and transport (94%). The average cost of supporting one health visit was estimated at $78.51 AUD (2021). Impact on the person's household included loss of opportunity for housemates (30%), reduced supervision within the home (79%) and longer timeframes to complete care needs (32%). The impact of COVID-19 restrictions saw a reduction in allied and mental health service use that did not return to prepandemic levels following the cessation of restrictions. Primary care, specialist, outpatient, pathology and emergency service use was also lower in the postrestriction period compared to the prepandemic period.
Conclusions
For people living in group homes, the disability provider plays an essential role in supporting health service access, primarily through the provision of support staff and transport. The change in health service utilisation following the COVID-19 restriction period indicates that altered health system priorities can potentially exacerbate access inequality for people with intellectual disability.
{"title":"What supports are people with intellectual disability living in group homes provided to access health care? A case study","authors":"Rachel Skoss, Paola Chivers, Glenn Arendts, Caroline Bulsara, Rena Vithiatharan, Jim Codde","doi":"10.1111/bld.12601","DOIUrl":"10.1111/bld.12601","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>People with intellectual disabilities living in group homes often have complex health needs, are high health service users and need support from their service provider to access health services. In Australia, little is known about the types and amounts of these supports.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A case study was conducted on a large Western Australian disability provider of group homes to 160 people with intellectual disability. Over an 18-month period, including during the COVID-19 pandemic, the study quantified health service use in hospital- and community-based settings, ways by which the person was supported to access health care and the impact on other people supported by the provider. Economic costs of supporting access to health services were estimated.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Overall, the disability provider supported 160 people in accessing health services an average of 23 times each (<i>n</i> = 3617, median = 20, interquartile range = 10–33) over the 18 months. Support included staff attending with the person (96%), following up with guardian/decision-maker (50%), additional resourcing via overtime or staff backfills (6%) and transport (94%). The average cost of supporting one health visit was estimated at $78.51 AUD (2021). Impact on the person's household included loss of opportunity for housemates (30%), reduced supervision within the home (79%) and longer timeframes to complete care needs (32%). The impact of COVID-19 restrictions saw a reduction in allied and mental health service use that did not return to prepandemic levels following the cessation of restrictions. Primary care, specialist, outpatient, pathology and emergency service use was also lower in the postrestriction period compared to the prepandemic period.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>For people living in group homes, the disability provider plays an essential role in supporting health service access, primarily through the provision of support staff and transport. The change in health service utilisation following the COVID-19 restriction period indicates that altered health system priorities can potentially exacerbate access inequality for people with intellectual disability.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 3","pages":"549-561"},"PeriodicalIF":1.2,"publicationDate":"2024-05-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12601","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140828048","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}
Mothers with learning disabilities are at higher risk of child removal and mental health difficulties and may face more barriers to developing attachment relationships with their children. Mothers with learning disabilities' voices are still underrepresented in research, with less known about those who are actively parenting their children. This study aimed to explore mothers' perceptions of developing emotional relationships with their children.
Methods
Mothers with learning disabilities who were actively parenting were recruited via advocacy groups across the United Kingdom. Semi-structured interviews with 10 mothers who self-identified as having learning disabilities were analysed using thematic analysis.
Findings
Three key themes were generated: (1) Understanding and Facilitating Attachment Relationships, (2) Barriers to the Attachment Relationship and (3) Bidirectional Nature of Relationships: Child Needs Mother, Mother Needs Child. Overarching experiences of powerlessness, autonomy and resilience were prominent across mothers' experiences.
Conclusions
Mothers acknowledged the importance of close emotional relationships with their children. Subthemes highlighted that mothers recognised the importance of behaviours that mirrored attachment theory, including reciprocity and proximity seeking. Mother–child relationships faced varying challenges including separation and conflict between the mother's and the child's needs. Findings indicate the need to support mothers through a trauma-informed attachment perspective, especially in the context of maternal mental health needs and where children may also have additional needs.
{"title":"‘So the child feels loved’: Mothers with learning disabilities' experiences of attachment and emotional relationships with their children","authors":"Rowan Hevesi, Kate Theodore","doi":"10.1111/bld.12599","DOIUrl":"10.1111/bld.12599","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Mothers with learning disabilities are at higher risk of child removal and mental health difficulties and may face more barriers to developing attachment relationships with their children. Mothers with learning disabilities' voices are still underrepresented in research, with less known about those who are actively parenting their children. This study aimed to explore mothers' perceptions of developing emotional relationships with their children.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Mothers with learning disabilities who were actively parenting were recruited via advocacy groups across the United Kingdom. Semi-structured interviews with 10 mothers who self-identified as having learning disabilities were analysed using thematic analysis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Three key themes were generated: (1) Understanding and Facilitating Attachment Relationships, (2) Barriers to the Attachment Relationship and (3) Bidirectional Nature of Relationships: Child Needs Mother, Mother Needs Child. Overarching experiences of powerlessness, autonomy and resilience were prominent across mothers' experiences.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Mothers acknowledged the importance of close emotional relationships with their children. Subthemes highlighted that mothers recognised the importance of behaviours that mirrored attachment theory, including reciprocity and proximity seeking. Mother–child relationships faced varying challenges including separation and conflict between the mother's and the child's needs. Findings indicate the need to support mothers through a trauma-informed attachment perspective, especially in the context of maternal mental health needs and where children may also have additional needs.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 4","pages":"644-655"},"PeriodicalIF":1.2,"publicationDate":"2024-04-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12599","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140828045","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":"Wolf Wolfensberger—The Influence of the Person and His Ideas Today—A Festschrift By R. Lemay, C. Caruso and S. Thomas (Eds.), Plantagenet Ontario, Canada: Valor Press. 2023","authors":"Tim Stainton","doi":"10.1111/bld.12597","DOIUrl":"10.1111/bld.12597","url":null,"abstract":"","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 4","pages":"711-712"},"PeriodicalIF":1.2,"publicationDate":"2024-04-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140584519","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}
Eilish A. Burke, Rachael Carroll, Maire O'Dwyer, J Bernard Walsh, Philip McCallion, Mary McCarron
Background
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.
Methods
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.
Results
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.
Conclusion
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.
{"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
Background
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.
Methods
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.
Results
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.
Conclusions
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.
{"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}
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.
Methods
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.
Findings
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.
Conclusion
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.
{"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
Background
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.
Methods
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.
Findings
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.
Conclusion
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.
{"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
Background
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.
Methods
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.
Findings
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.
Conclusions
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
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