Communicating with people with severe/profound intellectual disabilities is essential for person-centred, rights-based support. Despite a proliferation of research around COVID-19, there is a dearth of evidence exploring its impact on communication with people with severe/profound intellectual disabilities. This study aimed to explore disability support staff experiences of communicating with people with severe/profound intellectual disabilities through the COVID-19 pandemic.
Methods
A qualitative descriptive study was undertaken. A purposive sample of six disability support staff who supported people with severe/profound intellectual disabilities through the pandemic in four Irish residential services participated in online, semistructured interviews. Data were analysed thematically.
Findings
Six themes were generated including unwavering commitment; running on empty; being a safe haven; empathic understanding; heightened sensitivity and new insights. Participants discussed the impact of COVID-19 on communicating with people they support, the contextual challenges, how these were managed/overcome and new learning that emerged. Although communication challenges did present because of COVID-19 restrictions, communication remained a priority.
Conclusions
Despite the challenges experienced by disability support workers, their unwavering commitment to ensuring the well-being of people with severe/profound intellectual disabilities was identified. This was a small-scale qualitative study but highlights areas warranting further research and makes recommendations for practice and service planning.
{"title":"‘We became their beginning, their middle and their end’","authors":"Michelle Murphy, Anne-Marie Martin","doi":"10.1111/bld.12565","DOIUrl":"10.1111/bld.12565","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Communicating with people with severe/profound intellectual disabilities is essential for person-centred, rights-based support. Despite a proliferation of research around COVID-19, there is a dearth of evidence exploring its impact on communication with people with severe/profound intellectual disabilities. This study aimed to explore disability support staff experiences of communicating with people with severe/profound intellectual disabilities through the COVID-19 pandemic.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A qualitative descriptive study was undertaken. A purposive sample of six disability support staff who supported people with severe/profound intellectual disabilities through the pandemic in four Irish residential services participated in online, semistructured interviews. Data were analysed thematically.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Six themes were generated including unwavering commitment; running on empty; being a safe haven; empathic understanding; heightened sensitivity and new insights. Participants discussed the impact of COVID-19 on communicating with people they support, the contextual challenges, how these were managed/overcome and new learning that emerged. Although communication challenges did present because of COVID-19 restrictions, communication remained a priority.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Despite the challenges experienced by disability support workers, their unwavering commitment to ensuring the well-being of people with severe/profound intellectual disabilities was identified. This was a small-scale qualitative study but highlights areas warranting further research and makes recommendations for practice and service planning.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 2","pages":"225-235"},"PeriodicalIF":1.5,"publicationDate":"2023-11-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12565","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138496238","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}
Despite humanistic declarations regarding the rights of people with intellectual disability to live a full, meaningful life, in practice, resulting from dilemmas experienced by direct support provides, support is often limited to a focus on functional independence. The aim of this research was to define the theoretical principles by which the gap between humanistic declarations and practice can be overcome.
Method
The research focused on the role perception of 30 direct support providers who participated in semistructured interviews. A case study methodology was used applying an interpretative phenomenological analysis (IPA).
Findings
The interviews revealed that a humanistic perspective has been partially incorporated into the general attitudes of direct support providers. In practice, however, they indicated that they face dilemmas that challenge them in their daily work.
Conclusion
To assist direct support providers in resolving their dilemmas, by adhering to humanistic principles, a ‘humanization’ model is offered. The theoretical principles underlying the model focus on meaningful life as the aim of support, enhancing recipients’ autonomy, adhering to a holistic perspective and conducting dialogues acknowledging the abilities of people with intellectual disability to understand, choose and face challenges. Further examination of the model and its application in practice is recommended.
{"title":"Humanization: The humanistic perspective as a guide for supporting people with intellectual disability","authors":"Ran Neuman","doi":"10.1111/bld.12568","DOIUrl":"10.1111/bld.12568","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Despite humanistic declarations regarding the rights of people with intellectual disability to live a full, meaningful life, in practice, resulting from dilemmas experienced by direct support provides, support is often limited to a focus on functional independence. The aim of this research was to define the theoretical principles by which the gap between humanistic declarations and practice can be overcome.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>The research focused on the role perception of 30 direct support providers who participated in semistructured interviews. A case study methodology was used applying an interpretative phenomenological analysis (IPA).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>The interviews revealed that a humanistic perspective has been partially incorporated into the general attitudes of direct support providers. In practice, however, they indicated that they face dilemmas that challenge them in their daily work.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>To assist direct support providers in resolving their dilemmas, by adhering to humanistic principles, a ‘humanization’ model is offered. The theoretical principles underlying the model focus on meaningful life as the aim of support, enhancing recipients’ autonomy, adhering to a holistic perspective and conducting dialogues acknowledging the abilities of people with intellectual disability to understand, choose and face challenges. Further examination of the model and its application in practice is recommended.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 2","pages":"216-224"},"PeriodicalIF":1.5,"publicationDate":"2023-11-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138496249","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}
{"title":"Intellectual disabilities: Health and social care across the lifespan By Sheerin Fintan, Doyle Carmel (Eds.), Switzerland: Springer. 2023. €50.28 (eBook 978-3-031-27496-1, €39.58). ISBN: 978-3-031-27495-4.","authors":"Owen Doody","doi":"10.1111/bld.12567","DOIUrl":"10.1111/bld.12567","url":null,"abstract":"","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 2","pages":"436"},"PeriodicalIF":1.5,"publicationDate":"2023-11-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139254158","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}
Service user involvement is imperative in the delivery of mental health services. However, a paucity of research has explored how individuals with a learning disability find waiting for therapy. Therefore, this project aimed to explore how service users accessing a community learning disability team experienced waiting for psychological therapy.
Methods
Ten adults on a waiting list for psychological therapy in Yorkshire, UK completed a semistructured interview, which explored their experiences of being on the waiting list. Interviews were transcribed and analysed using thematic analysis.
Findings
Five superordinate themes were drawn from the analysis. Participants recalled long waits for therapy, struggled waiting and were unsure when therapy would start. Relief and hopefulness were common when they were put forward for therapy. Difficulties reading and/or remembering letters were prominent. Keeping busy and support from others helped participants cope while waiting. Participants would have valued additional support including having someone on call, regular check-ins and information on other appropriate services.
Conclusions
This project led to a range of recommendations to inform a psychology waiting list standard operating procedure, service developments and improve the waiting list experience for service users. A future project exploring parent and carer experiences of the waiting list is warranted.
{"title":"A service evaluation exploring clients' experiences of being on a waiting list for individual psychological therapy with a community learning disability team","authors":"Laura Hall","doi":"10.1111/bld.12564","DOIUrl":"10.1111/bld.12564","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Service user involvement is imperative in the delivery of mental health services. However, a paucity of research has explored how individuals with a learning disability find waiting for therapy. Therefore, this project aimed to explore how service users accessing a community learning disability team experienced waiting for psychological therapy.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Ten adults on a waiting list for psychological therapy in Yorkshire, UK completed a semistructured interview, which explored their experiences of being on the waiting list. Interviews were transcribed and analysed using thematic analysis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Five superordinate themes were drawn from the analysis. Participants recalled long waits for therapy, struggled waiting and were unsure when therapy would start. Relief and hopefulness were common when they were put forward for therapy. Difficulties reading and/or remembering letters were prominent. Keeping busy and support from others helped participants cope while waiting. Participants would have valued additional support including having someone on call, regular check-ins and information on other appropriate services.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>This project led to a range of recommendations to inform a psychology waiting list standard operating procedure, service developments and improve the waiting list experience for service users. A future project exploring parent and carer experiences of the waiting list is warranted.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 2","pages":"208-215"},"PeriodicalIF":1.5,"publicationDate":"2023-11-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138496248","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}
Jonathan Williams, Fiona Pender, Saman Shahzad, Ceri Woodrow, Rimsha Dar, Matthew Humphreys, Joanne Evans-Stone, Sharleen Nall-Evans, Peter Wilson
Background
This study investigated differences in the clinical and demographic characteristics of individuals with intellectual disabilities delayed in assessment and treatment hospitals versus individuals who were not delayed. The study further investigated the clinical outcomes of the individuals whose discharge from the hospital was delayed.
Method
This was a cohort study using secondary data collected from patient records. Variables included age, ethnicity, levels of deprivation, areas of origin, diagnoses, and the provision of a care and treatment review. A comparison was made between individuals who became delayed despite being clinically ready for discharge and those who were discharged on time.
Findings
Individuals with severe intellectual disabilities were more likely to experience delayed discharge from hospital (p = 0.001). Similarly, people who were admitted to hospitals away from their home areas were also more likely to experience delayed discharge (p < 0.001). There were no significant differences between the delayed and nondelayed groups for other factors such as age, deprivation or ethnicity. Individuals who experienced a delay in discharge did not experience an increased rate of adverse incidents compared to the period of active treatment and clinical improvements were maintained during the period of delay. There were low rates of completion of care and treatment reviews before admission, although people who were delayed were more likely to have received a review during admission (78.8% vs. 27.1%).
Conclusion
It is important for clinicians and service development leads to be aware that people who are admitted away from their home area and people with severe intellectual disabilities may be at higher risk of experiencing significantly delayed discharge from the hospital. More broadly, many people remained in hospital for a substantial length of time after being assessed as clinically ready for discharge. Due to the low rates of completion before admission, the expansion of community-based care and treatment reviews should also be explored. While people did not suffer increased rates of adverse incidents during their extended stay, their liberty was still restricted, hence there should be a focus on effective community provision. The current model of relying on the willingness of independent providers to support the care of complex individuals requires significant reform.
{"title":"A study of the clinical and demographic characteristics of adults with an intellectual disability who remain in learning disability assessment and treatment units despite being clinically ready for discharge","authors":"Jonathan Williams, Fiona Pender, Saman Shahzad, Ceri Woodrow, Rimsha Dar, Matthew Humphreys, Joanne Evans-Stone, Sharleen Nall-Evans, Peter Wilson","doi":"10.1111/bld.12562","DOIUrl":"10.1111/bld.12562","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>This study investigated differences in the clinical and demographic characteristics of individuals with intellectual disabilities delayed in assessment and treatment hospitals versus individuals who were not delayed. The study further investigated the clinical outcomes of the individuals whose discharge from the hospital was delayed.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>This was a cohort study using secondary data collected from patient records. Variables included age, ethnicity, levels of deprivation, areas of origin, diagnoses, and the provision of a care and treatment review. A comparison was made between individuals who became delayed despite being clinically ready for discharge and those who were discharged on time.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Individuals with severe intellectual disabilities were more likely to experience delayed discharge from hospital (<i>p</i> = 0.001). Similarly, people who were admitted to hospitals away from their home areas were also more likely to experience delayed discharge (<i>p</i> < 0.001). There were no significant differences between the delayed and nondelayed groups for other factors such as age, deprivation or ethnicity. Individuals who experienced a delay in discharge did not experience an increased rate of adverse incidents compared to the period of active treatment and clinical improvements were maintained during the period of delay. There were low rates of completion of care and treatment reviews before admission, although people who were delayed were more likely to have received a review during admission (78.8% vs. 27.1%).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>It is important for clinicians and service development leads to be aware that people who are admitted away from their home area and people with severe intellectual disabilities may be at higher risk of experiencing significantly delayed discharge from the hospital. More broadly, many people remained in hospital for a substantial length of time after being assessed as clinically ready for discharge. Due to the low rates of completion before admission, the expansion of community-based care and treatment reviews should also be explored. While people did not suffer increased rates of adverse incidents during their extended stay, their liberty was still restricted, hence there should be a focus on effective community provision. The current model of relying on the willingness of independent providers to support the care of complex individuals requires significant reform.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 2","pages":"199-207"},"PeriodicalIF":1.5,"publicationDate":"2023-11-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138496247","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}
Immigrant parents' perspectives on raising adolescents and young adults with intellectual disabilities during the transition to adulthood are the focus of this study. Disabled children demand more care and support as they mature and transition to adulthood. This increased care demand places significant stress on parents' wellbeing and participation in social and economic activities.
Methods
Qualitative interviews were undertaken with purposively sampled immigrant parents of adolescents and young adults with intellectual disabilities transitioning into adulthood. The study used inductive thematic analysis to identify common themes across the data set.
Findings
The birth of their disabled child marked a new beginning in a family's life, characterised first by shock and later by acceptance. Informants experienced challenges associated with language and information access, reduced service, social isolation, skewed gender roles and worrying about their children's future.
Conclusions
The intersection between migration and disability can aggravate the care burden. Knowledge about parents' experiences is crucial for designing rehabilitation programmes, promoting wellbeing and bridging gaps between services recommended by service providers and the actual needs of the family and child.
{"title":"The lived experience of immigrant parents of disabled adolescents and young adults transitioning into adulthood: A narrative inquiry","authors":"Dominic Andrew Nyikach, Ketil Lenert Hansen","doi":"10.1111/bld.12563","DOIUrl":"10.1111/bld.12563","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Immigrant parents' perspectives on raising adolescents and young adults with intellectual disabilities during the transition to adulthood are the focus of this study. Disabled children demand more care and support as they mature and transition to adulthood. This increased care demand places significant stress on parents' wellbeing and participation in social and economic activities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Qualitative interviews were undertaken with purposively sampled immigrant parents of adolescents and young adults with intellectual disabilities transitioning into adulthood. The study used inductive thematic analysis to identify common themes across the data set.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>The birth of their disabled child marked a new beginning in a family's life, characterised first by shock and later by acceptance. Informants experienced challenges associated with language and information access, reduced service, social isolation, skewed gender roles and worrying about their children's future.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The intersection between migration and disability can aggravate the care burden. Knowledge about parents' experiences is crucial for designing rehabilitation programmes, promoting wellbeing and bridging gaps between services recommended by service providers and the actual needs of the family and child.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 2","pages":"188-198"},"PeriodicalIF":1.5,"publicationDate":"2023-11-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12563","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138496246","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}
Lauren Blood, Francesca Ribenfors, Chris Hatton, Anna Marriott
Background
People with learning disabilities have the right to choose where they live. However, evidence suggests people's choices are limited due to a shortage of housing.
Methods
200 Lives was a mixed methods research project, which evaluated supported living and residential care for people with learning disabilities in England; 107 people with learning disabilities took part, 77 from supported living and 30 from residential care.
Findings
Two-thirds of people in supported living compared to half of those in residential care chose the place they were currently living in; however, less than half of all participants looked at another property before moving to their current house. People in supported living were significantly more likely to have chosen who they lived with. Reasons for moving mainly consisted of reactive moves following an issue with the previous living situation. Many people had not considered moving in the future.
Conclusion
Findings suggest that people's choices about where to live were constrained regarding the properties on offer and who to live with. This suggests that people's housing rights were not being upheld. Support and housing providers should ensure that housing can adapt to people's changing needs and wishes over the course of their lives.
{"title":"Moving house: How much choice do people with learning disabilities have about where they live?","authors":"Lauren Blood, Francesca Ribenfors, Chris Hatton, Anna Marriott","doi":"10.1111/bld.12558","DOIUrl":"10.1111/bld.12558","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>People with learning disabilities have the right to choose where they live. However, evidence suggests people's choices are limited due to a shortage of housing.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>200 Lives was a mixed methods research project, which evaluated supported living and residential care for people with learning disabilities in England; 107 people with learning disabilities took part, 77 from supported living and 30 from residential care.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Two-thirds of people in supported living compared to half of those in residential care chose the place they were currently living in; however, less than half of all participants looked at another property before moving to their current house. People in supported living were significantly more likely to have chosen who they lived with. Reasons for moving mainly consisted of reactive moves following an issue with the previous living situation. Many people had not considered moving in the future.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Findings suggest that people's choices about where to live were constrained regarding the properties on offer and who to live with. This suggests that people's housing rights were not being upheld. Support and housing providers should ensure that housing can adapt to people's changing needs and wishes over the course of their lives.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 1","pages":"140-149"},"PeriodicalIF":1.5,"publicationDate":"2023-11-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12558","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135819489","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}
Athena Ip, Sally Kendall, Ali Jabeen, Scott Watkin, Anna Cox
<div> <section> <h3> Background</h3> <p>With the right support, people with learning disabilities can be ‘good enough’ parents (Coren et al., 2011; Murphy & Feldman, 2002). Parenting programmes exist to support parents and are made accessible for people with learning disabilities who are expecting a baby, but evaluation of the benefit of these interventions is poor due to a lack of accessible outcome measures (May & Harris, 2020; Wade et al., 2008). The Tool to Measure Parenting Self-Efficacy in the antenatal period (TOPSE- ante-natal) measures the impact of parenting interventions on an individual's self-efficacy during the antenatal period. This study aimed to modify the TOPSE ante-natal tool through a process of inclusive research, to support a consistent approach to evaluating parenting interventions from the perspective of parents-to-be with learning disabilities.</p> </section> <section> <h3> Methods</h3> <p>A two-phase study using interviews and discussion groups was conducted in a process of inclusive research to modify the TOPSE ante-natal tool. Phase one involved conducting eight cognitive interviews (interviews to understand how individuals process and recall information) with parents with learning disabilities. These were conducted remotely via Microsoft Teams, transcribed verbatim and analysed using content analysis (Krippendorff, 2013). Participants were recruited using snowballing techniques through the advisory groups' networks. Phase two included three discussion groups with study collaborators and advisors (<i>n</i> = 14) to assess the accessibility and acceptability of adaptations of the tool, each making further refinements for consideration.</p> </section> <section> <h3> Findings</h3> <p>Interviews and discussion groups highlighted how parents-to-be with learning disabilities experienced some of the original TOPSE-ante-natal negative statements, including negative points on a Likert scale, difficult to comprehend. Figurative statements and unfamiliar words also caused confusion, and statements focussed on the pressures of parenting were experienced as confrontational by people with learning disabilities. Statements were removed or replaced and agreed upon in discussion groups to ensure that the tool was accessible and meaningful to people with learning disabilities.</p> </section> <section> <h3> Conclusions</h3> <p>We have used a process of inclusive research to modify a self-efficacy tool for parents-to-be with learning disabilities that is freely available on the TOPSE website (https://www.topse.org.uk/site/). The nex
{"title":"A measure to evaluate parenting interventions: Using inclusive research to modify a tool to measure change in parenting self-efficacy during the antenatal period","authors":"Athena Ip, Sally Kendall, Ali Jabeen, Scott Watkin, Anna Cox","doi":"10.1111/bld.12561","DOIUrl":"10.1111/bld.12561","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>With the right support, people with learning disabilities can be ‘good enough’ parents (Coren et al., 2011; Murphy & Feldman, 2002). Parenting programmes exist to support parents and are made accessible for people with learning disabilities who are expecting a baby, but evaluation of the benefit of these interventions is poor due to a lack of accessible outcome measures (May & Harris, 2020; Wade et al., 2008). The Tool to Measure Parenting Self-Efficacy in the antenatal period (TOPSE- ante-natal) measures the impact of parenting interventions on an individual's self-efficacy during the antenatal period. This study aimed to modify the TOPSE ante-natal tool through a process of inclusive research, to support a consistent approach to evaluating parenting interventions from the perspective of parents-to-be with learning disabilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A two-phase study using interviews and discussion groups was conducted in a process of inclusive research to modify the TOPSE ante-natal tool. Phase one involved conducting eight cognitive interviews (interviews to understand how individuals process and recall information) with parents with learning disabilities. These were conducted remotely via Microsoft Teams, transcribed verbatim and analysed using content analysis (Krippendorff, 2013). Participants were recruited using snowballing techniques through the advisory groups' networks. Phase two included three discussion groups with study collaborators and advisors (<i>n</i> = 14) to assess the accessibility and acceptability of adaptations of the tool, each making further refinements for consideration.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Interviews and discussion groups highlighted how parents-to-be with learning disabilities experienced some of the original TOPSE-ante-natal negative statements, including negative points on a Likert scale, difficult to comprehend. Figurative statements and unfamiliar words also caused confusion, and statements focussed on the pressures of parenting were experienced as confrontational by people with learning disabilities. Statements were removed or replaced and agreed upon in discussion groups to ensure that the tool was accessible and meaningful to people with learning disabilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>We have used a process of inclusive research to modify a self-efficacy tool for parents-to-be with learning disabilities that is freely available on the TOPSE website (https://www.topse.org.uk/site/). The nex","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 2","pages":"179-187"},"PeriodicalIF":1.5,"publicationDate":"2023-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12561","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135325823","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}
Linn Johnels, Helena Wandin, Shakila Dada, Jenny Wilder
Background
Interactive engagement, specifically attention and initiation, are considered important skills for facilitating development and learning in students with severe/profound intellectual and multiple disabilities. Prior research has suggested that music therapy and multisensory storytelling are two promising interventions for supporting interactive engagement in this population. However, there are no known/published studies that have investigated the effect of combining relevant elements from musical interaction and multisensory storytelling for this group of students. This study aims to determine the effect of a novel educational approach—MultiSensory Music Drama (MSMD)—on the interactive engagement of students with severe/profound intellectual and multiple disabilities.
Methods
A single-case experimental design, specifically an ABAB design across three participants, was used to describe the effect of MSMD on interactive engagement when compared with a control activity. School staff members' perceptions of student interactive engagement and social validity were obtained.
Findings
Coded video observations showed significantly higher levels of interactive engagement during MSMD for all three participants when compared to the control activity. Furthermore, the ratings on the interactive engagement from school staff members improved for two of the three participants. Finally, school staff members scored the social validity and perceived educational usefulness of the MSMD as very high.
Conclusions
The findings provide initial evidence that MSMD may be effective in supporting the interactive engagement of some students with severe/profound intellectual and multiple disabilities.
{"title":"The effect of MultiSensory Music Drama on the interactive engagement of students with severe/profound intellectual and multiple disabilities","authors":"Linn Johnels, Helena Wandin, Shakila Dada, Jenny Wilder","doi":"10.1111/bld.12559","DOIUrl":"10.1111/bld.12559","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Interactive engagement, specifically attention and initiation, are considered important skills for facilitating development and learning in students with severe/profound intellectual and multiple disabilities. Prior research has suggested that music therapy and multisensory storytelling are two promising interventions for supporting interactive engagement in this population. However, there are no known/published studies that have investigated the effect of combining relevant elements from musical interaction and multisensory storytelling for this group of students. This study aims to determine the effect of a novel educational approach—MultiSensory Music Drama (MSMD)—on the interactive engagement of students with severe/profound intellectual and multiple disabilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A single-case experimental design, specifically an ABAB design across three participants, was used to describe the effect of MSMD on interactive engagement when compared with a control activity. School staff members' perceptions of student interactive engagement and social validity were obtained.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Coded video observations showed significantly higher levels of interactive engagement during MSMD for all three participants when compared to the control activity. Furthermore, the ratings on the interactive engagement from school staff members improved for two of the three participants. Finally, school staff members scored the social validity and perceived educational usefulness of the MSMD as very high.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The findings provide initial evidence that MSMD may be effective in supporting the interactive engagement of some students with severe/profound intellectual and multiple disabilities.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 1","pages":"150-165"},"PeriodicalIF":1.5,"publicationDate":"2023-10-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12559","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135779400","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}
<p>We are three women who have all gone through menopause. We all live and work in Melbourne, Australia. Amanda and Janice are self-advocates for the rights of people with learning disabilities in Australia. They have been advocate researchers in a number of research projects over the past 20 years including studies on sexuality and relationships, women's sexual health, a history of self-advocacy and life histories of women with learning disabilities (Johnson et al., <span>2001</span>, <span>2002</span>; Traustadottir & Johnson, <span>2000</span>). Both have held official positions in self-advocacy organisations and have presented their work at conferences in both Australia and overseas. Currently, Janice is president of a self-advocacy organisation and Amanda is involved in a number of different advocacy organisations and a community radio program. Kelley is a researcher who has worked with Amanda and Janice on a number of the research projects in which they have been involved. We have written articles and book chapters and given conference papers together.</p><p>We have been colleagues and friends for many years. We met three times to review this article. At our first meeting we looked at five possible articles which we could review and chose the one which seemed most relevant to us as women. We discussed this decision at some length and some of that discussion is included in this review.</p><p>We received from the authors of the article a plain English version of it, which we found very helpful. On our second meeting, which was a full afternoon's work, we used the Plain English version as a basis for our discussions. We had all read it before we met. Kelley had also read the full article and went to it when we wanted more detailed information than that given in the Plain English version. We recorded our discussion and Kelley also made notes of it. During this discussion we identified questions we wanted to discuss with the authors, and we also discussed our responses to the article. The questions were sometimes a starting point for discussion and sometimes they developed from it. Kelley took the recording and notes home and wrote a draft of our response. She sent this to Amanda and Janice. At our third meeting, we discussed what had been written, changed some of it and prepared for our discussion with the authors. We then met on Zoom with the authors and discussed our responses.</p><p>We have organised this review as questions and our ideas and responses to each of them. Because this review was the result of a discussion between the three of us we have organised it as questions and comments rather than as separate responses from each of us though sometimes we use particular quotes from one of us. We have included in italics a summary of the responses from the writers of the article following our Zoom meeting.</p><p>We were given a choice of five articles to review and chose the one on the experiences of women with menopause because as wome
{"title":"In response to: “It should be more outspoken and not hushed away, not like put in a dark box”: An interpretative phenomenological analysis of experiences of menopause voiced by women with learning disabilities (Katie Langer-Shapland, Stephen J. Minton, Nel Richards)","authors":"Amanda Millear, Janice Slattery, Kelley Johnson","doi":"10.1111/bld.12557","DOIUrl":"https://doi.org/10.1111/bld.12557","url":null,"abstract":"<p>We are three women who have all gone through menopause. We all live and work in Melbourne, Australia. Amanda and Janice are self-advocates for the rights of people with learning disabilities in Australia. They have been advocate researchers in a number of research projects over the past 20 years including studies on sexuality and relationships, women's sexual health, a history of self-advocacy and life histories of women with learning disabilities (Johnson et al., <span>2001</span>, <span>2002</span>; Traustadottir & Johnson, <span>2000</span>). Both have held official positions in self-advocacy organisations and have presented their work at conferences in both Australia and overseas. Currently, Janice is president of a self-advocacy organisation and Amanda is involved in a number of different advocacy organisations and a community radio program. Kelley is a researcher who has worked with Amanda and Janice on a number of the research projects in which they have been involved. We have written articles and book chapters and given conference papers together.</p><p>We have been colleagues and friends for many years. We met three times to review this article. At our first meeting we looked at five possible articles which we could review and chose the one which seemed most relevant to us as women. We discussed this decision at some length and some of that discussion is included in this review.</p><p>We received from the authors of the article a plain English version of it, which we found very helpful. On our second meeting, which was a full afternoon's work, we used the Plain English version as a basis for our discussions. We had all read it before we met. Kelley had also read the full article and went to it when we wanted more detailed information than that given in the Plain English version. We recorded our discussion and Kelley also made notes of it. During this discussion we identified questions we wanted to discuss with the authors, and we also discussed our responses to the article. The questions were sometimes a starting point for discussion and sometimes they developed from it. Kelley took the recording and notes home and wrote a draft of our response. She sent this to Amanda and Janice. At our third meeting, we discussed what had been written, changed some of it and prepared for our discussion with the authors. We then met on Zoom with the authors and discussed our responses.</p><p>We have organised this review as questions and our ideas and responses to each of them. Because this review was the result of a discussion between the three of us we have organised it as questions and comments rather than as separate responses from each of us though sometimes we use particular quotes from one of us. We have included in italics a summary of the responses from the writers of the article following our Zoom meeting.</p><p>We were given a choice of five articles to review and chose the one on the experiences of women with menopause because as wome","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"51 4","pages":"613-616"},"PeriodicalIF":1.5,"publicationDate":"2023-10-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"71962795","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}
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