|
'Just knowing' and the challenges of giving medicines to children with severe and profound intellectual disabilities: A hermeneutic inquiry Series: British Journal of Learning Disabilities ; 49 (1) 3-12: 2021- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/bld.12354
- Accessible summary I asked mothers to speak to me about their experience of giving medicines to their child with severe and profound intellectual disabilities. Mothers told me their instincts often tell them how their child is and they also talked about the challenges in giving medicines every day. The findings from this study show how important it is that professionals understand how difficult it can be. It is essential that we support mothers to 'give medicines.' Abstract Background Children with severe and profound intellectual disabilities experience multiple chronic health conditions requiring a variety of medications. The aim of this study was to explore mothers' lived experience of giving medicines to children with severe and profound intellectual disabilities. Materials and Methods A hermeneutic phenomenological approach was adopted with a purposeful sample of 15 mothers adopted. Face-to-face interviews and participant diaries were utilised for data collection. Results Themes were identified with one being that of 'lived body' exploring how mothers 'just know' or use their instincts and also the challenges they encountered in daily life when giving medicines. Conclusions This paper provides insight into the complexity of giving medicines to children with severe and profound intellectual disabilities and the level of support required by mothers.
ARTRES Article
|
|
"An understanding, a way of life": An exploration of learning disability professionals' experiences of compassion Series: British Journal of Learning Disabilities ; 48 (4) 348-355: 2020- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/bld.12311
- Accessible summary Compassion is described as a sensitivity to suffering in oneself and others, with an intent to alleviate and prevent it (Gilbert, Advances in Psychiatric Treatment, 2009, 15, 199). A population within health care that has limited research on compassionate care is that of learning disabilities. The current study aimed to explore the experiences of compassion of professionals within learning disability services. Attention was given to the flow of compassion between professionals and service users, as well as the growth of compassion, over time. The findings suggested that compassion is difficult to foster in learning disability services that also value time-pressured, target-driven outputs. More needs to be done to support services to encourage compassion in care, for example by considering candidates' compassion at recruitment and through supportive supervision and group reflection, for both people with learning disabilities and the healthcare professionals employed. Abstract Background Compassion is one of the six core principles that the NHS means to promote within health care. Research concerning compassion within learning disability services is scarce; therefore, the current study aimed to explore the experiences of compassion of professionals within learning disability services. Materials and Methods Twelve professionals from learning disability services completed a quantitative measure of professional quality of life and answered a series of qualitative questions regarding their experiences of compassion, in either an online survey or interview. Results Narrative analysis was used to interpret participants' experiences of compassion. Three chapters were generated based on thematic and linguistic connections. In chapter 1, participants explored their compassionate identities. In chapter 2, participants detailed the flow of compassion, experienced interpersonally and intrapersonally. In chapter 3, participants described their compassionate growth, owing to significant life events over time. Conclusions Recommendations for improving compassionate care have been made, including encouraging self-compassion for professionals through training screening for compassion during recruitment and including people with learning disabilities on interview panels.
ARTRES Article
|
|
"It was emotional"-A group for people with learning disabilities to talk about end of life Series: British Journal of Learning Disabilities ; 48 (3) 199-205: 2020- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/bld.12317
- Accessible summary People with a learning disability told us people do not talk to them about death. This is about a group we ran to help people learn about death and the end of their life. The group talked about people who had died and what might happen when they die. People in the group wanted help to talk to their own parents about what might happen when their parents die. People did not have enough information about the cost of funerals. The group was important as it helped people to learn. Some people made plans for what they would like to happen when they die. Abstract Background Academic research and reports from healthcare professionals tell us people with learning disabilities are not routinely supported to learn about end-of-life issues or make plans for the end of their lives. Materials Questionnaires were used to check how much people knew. Accessible symbols were used to help people understand end-of-life specific terms. Method Partnering with a charity, three sessions were held in three consecutive weeks to ask people in a convened group what they wanted to know and help them learn. The sessions supported people to start creating their own plans for funerals, where they want to die and what should happen with their possessions. Results This group had between 21 and 23 (N = 23) attendees each week and all except one person came back after the first week. The participants were keen to highlight what they did not know and learn about end-of-life issues. They also wanted support to plan for the end of their lives and their parents' lives, and the group tried to provide information and support on these topics. Conclusion This group was a valuable exercise that was very much needed by local people with learning disabilities. The group will run again and should be offered in other areas. Groups of this kind can offer unmet needs that are highlighted by national guidance in England, UK such as the NHS long-term plan and the Learning Disability Mortality Review Programme.
ARTRES Article
|
|
"It's not the same without you:" Exploring the experience and perception of transition for people with intellectual disabilities and dementia Series: British Journal of Learning Disabilities ; 49 (3) 365-372: 2021- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/bld.12412
- Accessible Summary This project focuses on people with intellectual disabilities and dementia that live in group homes or care facilities in the United States. People in this project shared how their life changed as they got older. They talked about where they live, what they do for work and how they get to spend their day. All the people in this project talked about how it was important for them to see their friends, even if where they lived or worked changed. People in this project worried that they would have to move or stop doing activities that were important to them if they started to need more help. People with intellectual disabilities and dementia should receive support to continue to see friends and do their favourite activities as they get older. Abstract Background For people with intellectual disabilities and dementia, transitions are likely to become increasingly common as they age. While transitions experienced by people with intellectual disabilities in young adulthood are frequently studied, less is known about transitions in older adults, including residential, vocational and leisure changes. This article aims to explore the experiences of transition from the perspectives of people with intellectual disabilities and dementia, including the impact on their daily lives. Methodology Three women with intellectual disabilities and dementia living in residential settings participated in participant observations and informal interviews across a variety of environments and activities. Field notes and interview transcripts underwent a thematic analysis focusing on transitions. Findings Participants experienced the impact of transitions in their residential placements, day programming, leisure activities and relationships. Themes related to their experiences of transitions included making sense of transitions, utilising peer care networks for support and tackling the looming threat of loss and transition. Conclusions Peer care networks and friendships are crucial in supporting people during and after transitions. Receiving effective supports to maintain relationships, roles and activities, even in seemingly minor ways, is an important right for people with intellectual disabilities and dementia, particularly as care needs increase.
ARTRES Article
|
|
"Someone will come in and say I'm doing it wrong." The perspectives of fathers with learning disabilities in England Series: British Journal of Learning Disabilities ; 49 (1) 23-33: 2021- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/bld.12351
- Accessible summary When people with learning disabilities have children and become parents, they sometimes need good support to help them. Research about parents with learning disabilities and the support they get is usually about mothers and not fathers. There is not very much written about dads with learning disabilities. This paper is about interviews with eight dads with learning disabilities who told us about what it was like to be a dad and about the kind of support they had got. We think more support needs to be given to parents with learning disabilities and that dads should be included in this. Abstract Background This article reports on the perspectives of fathers with a learning disability in England about being fathers and the support they have received. Although there is an established literature that considers parenting with a learning disability, few studies have focused on the perspectives of fathers. Method We adopted a qualitative approach for this study, using semi-structured interviews with eight fathers with learning disabilities, recruited through learning disability organisations and social media. The data were analysed using thematic analysis. Results Being a father was important to participants and the findings are presented in three themes: descriptions of fatherhood; challenges of fatherhood; and support with fatherhood. Conclusion We discuss how fathers' perspectives on fatherhood relate to wider transformations of fatherhood in society, the impact of these on fathering with a learning disability and the implications for services.
ARTRES Article
|
|
"Them two are around when I need their help" The importance of good relationships in supporting people with learning disabilities to be "in a good space" Series: British Journal of Learning Disabilities ; 49 (3) 293-302: 2021- https://ihc.idm.oclc.org/login?url=https://www.onlinelibrary.wiley.com/doi/abs/10.1111/bld.12410
- Accessible summary We talked to people who lived in a secure unit and their staff. We asked them about good relationships with each other. The majority of the people said that good relationships with staff can help people move back to the community and be "in a good space". Staff said that good relationships can stop people feeling angry. They said that they like to help people and have trust. It is important to have a good staff team who know the person well. Residents said staff help them and listen to them when they are upset. They said they like it when staff spend time with them doing activities. Based on what residents told us, we think it is important that services work on helping people to have good relationships. This is because these relationships were very important in helping people to move more quickly back into the community. Please see an easier to read version here: https://wp.me/pcRSAn-3V Abstract Background Despite repeated policy initiatives, an enduring number of people with learning disabilities remain resident in secure settings (also referred to as locked wards). The spatial and emotional distance from family and friends means that relationships with staff become central to people's lives, and are critical for a successful transition to making their home in the community. Methods This article uses a synthesis of evidence from two qualitative studies. We re-analysed data from fieldnotes and interview transcripts with people with learning disabilities resident in secure settings and with staff who worked with them. The purpose of the original studies was service improvement however, relationships -particularly with between staff and residents- emerged as a significant theme in both studies. Therefore, the data were revisited to explore these relationships in more depth. Findings The analysis identified that positive relationships with staff were critical in enabling residents to be "in a good space"-something they and staff viewed as a crucial factor for moving on. The analysis identified four main themes: (i) the characteristics of positive relationships, (ii) the challenges for positive relationships, (iii) how positive relationships can be encouraged and (iv) how positive relationships support people to move on. Conclusion We conclude that flattening the hierarchy between staff and residents is key when supporting people with learning disabilities to move on. We stress the importance of the "soft skills" in enabling people to transition back to their community. There is a pressing need for research with people who have made the transition from hospital to generate retrospective narratives about what elements of these relationships are most significant in supporting a successful transition.
ARTRES Article
|
|
A critical reflection on accessing women with learning disabilities to participate in research about sensitive subjects through organisational partnerships Series: British Journal of Learning Disabilities ; 48 (2) 162-169: 2020- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/bld.12314
- Accessible summary This article is about reaching out to people with learning disabilities to participate in research on sensitive topics, like contraception. Contraception is a way to prevent pregnancy. The article shows that working with organisations can help to find and support people with learning disabilities to take part in research. The article explores what research teams need to do when working with organisations to find and support research participants. Abstract Background Contraceptive use by women with learning disabilities differs from that of nondisabled women of a similar age. Women with learning disabilities start contraception earlier and often use it when they are not sexually active. Hence, there is a need to hear directly from these women about their experiences of contraceptive decision-making. However, accessing women to discuss a sensitive topic such as contraception poses significant challenges to researchers. Materials and Methods The study was qualitative in nature and involved conducting semi-structured interviews with 19 women. This paper reports on the methodological challenges and findings from the project which have wider implications for research on sensitive topics with hard-to-reach groups. It reflects critically on the challenges of accessing women with learning disabilities to participate in research on contraception. Results Twelve of the 19 participants in our project were recruited through two organisations. Working in partnership with organisations that had a keen interest in the research and endorsed it at senior level enabled us to overcome recruitment challenges. However, working in this way raised gatekeeping issues that impacted upon data collection and may have affected our substantive findings. Conclusions Working in partnership with organisations can be an effective and practical way of recruiting participants that researchers may otherwise find hard to reach. However, organisational partnerships can be hard to develop and take time. We argue that it is important to reflect openly and honestly about the methodological and ethical issues that may arise when working closely with organisations in sensitive research.
ARTRES Article
|
|
A group intervention incorporating mindfulness-informed techniques and relaxation strategies for individuals with learning disabilities Series: British Journal of Learning Disabilities ; 48 (3) 175-189: 2020- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/bld.12337
- Accessible Summary This paper reflects on a group for adults with learning disabilities. The group taught the adults some mindfulness-informed and relaxation techniques. These techniques can help when people feel angry, anxious or upset. The adults provided really useful comments that will help us when we plan future groups. Abstract Background Mindfulness-informed interventions are increasingly being offered to individuals with learning disabilities. The current paper aims to reflect on the provision and effectiveness of a group intervention incorporating mindfulness-informed techniques and relaxation strategies. Method Nine group attendees with mild learning disabilities were invited to attend the 8-week group intervention, incorporating mindfulness-informed techniques and relaxation strategies. The Glasgow Anxiety Scale for Intellectual Disabilities (GAS-ID) and the Cognitive and Affective Mindfulness Scale-Revised (CAMS-R) were used as a pre- and post-measure, to evaluate the effectiveness of the group intervention. Results The mean scores from the above measures revealed a decrease in anxiety symptoms and an increase in mindful qualities. Qualitative data gathered post-intervention, illustrated reductions in challenging behaviour, greater use of the techniques learned and social benefits of participating in the group. A need for a training session for carers and family members was recommended as beneficial to support and assist the individuals to consolidate the techniques learned. Conclusions Mindfulness-informed techniques and relaxation strategies are useful tools that can be adapted for individuals with learning disabilities to yield positive outcomes. However, further research to contribute to this evidence base is required. Recommendations for future practice are also identified.
ARTRES Article
|
|
A question of perspective-parenting and other matters in the lives of people with learning disabilities Series: British Journal of Learning Disabilities ; 49 (1) 1-2: 2021- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/bld.12368
ARTRES Article
|
|
Belonging for people with profound intellectual and multiple intellectual disabilities: Pushing the boundaries of inclusion Nind, M. & Strnadová, I. (editors) Routledge, 2020, ISBN: 978-0-367-20295-8, paperback £29.99 Series: British Journal of Learning Disabilities ; 48 (4) 356-357: 2020- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/bld.12345
ARTRES Article
|
|
Can sensory integration have a role in multi-element behavioural intervention? An evaluation of factors associated with the management of challenging behaviour in community adult learning disability services Series: British Journal of Learning Disabilities ; 48 (2) 142-153: 2020- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/bld.12308
- Accessible summary Sensory integration is about how our brain receives and processes information so we can make sense of our everyday life. Behavioural interventions is a term used to describe how to teach people to increase useful behaviours or decrease behaviours that are challenging. Some people with severe learning disabilities can have behaviour that challenges and this can be difficult to manage. To manage behaviours that challenge restrictive interventions have been used such as people being given medication, or being held by others against their will. Instead of using these restrictive interventions we can use sensory strategies and a low stimulus environment which have been found to be successful in managing behaviours that challenge. Abstract Introduction Adults with complex needs and severe learning disability present as a serious management problem within the community. Restrictive interventions are often used to manage adults with these issues, even though best practice recommends the use of positive behaviour support. Positive behaviour support involves functional analysis, but it does not specifically focus on sensory integration difficulties as a contributing factor to challenging behaviour. Methods A systematic search of the literature was completed using a range of electronic databases, an electronic search, hand search and review of reference lists. Seven relevant studies were identified. These studies were critically appraised and analysed. However, the extent of research was limited and the procedural quality variable, some distinct themes, arose. Results Out of the seven intervention studies included in this review, two studies used sensory integration therapy, three employed multi-element behavioural intervention, one utilised environmental stimulation within a multifactor behavioural intervention approach and one used sensory strategies within a structured behavioural intervention programme. The participants across the final seven papers reviewed consisted mainly of males with a high incidence of participants presenting with ASD. A range of assessment tools and outcome measures were used. Conclusions The use of restrictive intervention is still an issue in practice. Nearly all the studies reviewed stressed the issue of placing individuals with severe challenging behaviour in the community. Behavioural studies have successfully utilised sensory integration strategies within a structured behavioural format to manage challenging behaviour in a community setting for adults with a learning disability.
ARTRES Article
|
|
Case studies for positive behavior supports in classrooms and schools. Storey, K. Charles C Thomas Publisher, 2021, ISBN: 978-0-398-09366-2, Series: British Journal of Learning Disabilities ; 49 (4) 486-487: 2021- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/bld.12430
ARTRES Article
|
|
Decommissioning normal: COVID-19 as a disruptor of school norms for young people with learning disabilities Series: British Journal of Learning Disabilities ; 49 (4) 393-402: 2021- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/bld.12399
- Accessible summary The COVID-19 pandemic has forced everyone to live at a social distance from other people. This has changed the way people live and are included socially. This paper focuses on the unexpected ways schools have altered and deepened social inclusion for children with learning disabilities during the COVID-19 pandemic. We interviewed six people: two people who work for a Local Authority, one Headteacher of a special school, one Special Educational Needs and Disability Consultant, one young person with a learning disability and her mother. The findings and conclusions show the "new normal" caused by COVID-19 can help to deepen social inclusion for children with learning disabilities. For example, it can help children communicate in alternative ways with their teachers and friends. It can help families to understand more about their son/daughter's educational abilities; this means they can advocate better for them. It can help professionals to meet the needs of children with learning disabilities more quickly. We do not enjoy living at a social distance from everyone else, but we do want to make sure that lessons can be learnt from this moment in time. Abstract Background To slow the spread of COVID-19, on 20 March 2020, nurseries, schools and colleges across England were closed to all learners, apart from those who were children of key workers or were considered "vulnerable." As young people with learning disabilities, families, professionals and schools become acquainted with the Erfahrung of the new horizon brought about by COVID-19, the negativity of altered social inclusion is becoming the "new normal." Capturing this transitory moment in time, this paper reflexively analyses the curiously productive variables of altered ecological pathways to social inclusion for people with learning disabilities. Methods Taking a hermeneutic stance, this paper draws on Gadamer's construction of the nature of new experiences. Focussed on the experience of social inclusion during the COVID-19 pandemic, semi-structured interviews were conducted with six key stakeholders. As the phenomenon in question was new, an inductive approach to thematic analysis was applied. Findings The critical tenet of this paper is that the Erfahrung of COVID-19 has created the conditions for a "new normal" which have afforded children with learning disabilities altered opportunities for social inclusion, whether that be through increased power/agency for them and their families and/or new modes of connectedness leading to enhanced relationships. Conclusion Whilst the impact of COVID-19 has been a negative one for many aspects of society, application of Simplican and Gadamer's theories on social inclusion and the nature of new experiences has permitted the surfacing of new possibilities for the social inclusion of children with learning disabilities.
ARTRES Article
|
|
Developing a training course to teach research skills to people with learning disabilities: "It gives us a voice. We CAN be researchers!" Series: British Journal of Learning Disabilities ; 48 (4) 301-314: 2020- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/bld.12331
- Accessible Summary We are eight people with learning disabilities. We did a training course at a university in London. It was called "Learning how to do research." We learned about the 10 steps in research, and we practised how to do research. Part of the course was doing our own research project. Then, we presented it to an audience. In this article, our tutors describe the course. We say what it was like for us. Most of us were nervous about doing the course, but we learnt a lot from it. There are not many opportunities for people with learning disabilities to learn about research. We think more people with learning disabilities should have the chance to do it. We hope this article helps other teachers to start a research course. We can be researchers! Being involved in research gives us a voice. Abstract Background Within learning disability research, it is important to involve people with learning disabilities at all stages, but there are limited opportunities for them to learn about the research process or to gain research skills. Method An eight-session research training course for people with learning disabilities was developed and piloted at a university in London. The focus was on understanding the research process and gaining practical skills in collecting, analysing and presenting research data. Training methods were experimental, with an emphasis on learning by experience in a "fun" way. Results Ten people with learning disabilities completed the course, showing great enthusiasm and commitment. During the final sessions, students developed and conducted their own research projects, choosing "Employment" as their research topic. The training methods were well received. Benefits included an increase in confidence and new work opportunities for several of the students. This paper was co-authored by the tutors and most of the course graduates. Conclusion It is possible for people with learning disabilities to become skilled researchers, but in order to do so, it is important that they have adequate training opportunities. Funding should be made available for more such courses.
ARTRES Article
|
|
Disclosure and plan of care at end of life: Perspectives of people with intellectual disabilities and families in Ireland Series: British Journal of Learning Disabilities ; 48 (4) 340-347: 2020- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/bld.12339
- Accessible summary Professionals are reluctant to discuss sensitive information with people with intellectual disabilities. People with intellectual disabilities and families wish to engage in end-of-life discussions. People with intellectual disabilities expressed how they could handle bad news and they felt that this information could be used to help make choices. People with intellectual disabilities and families want to develop a plan based on their choices and wishes and there is a need to respect this at the end of life. Abstract Background Recently, more and more people with intellectual disabilities have been dying from life-limiting conditions, and on many occasions, people with intellectual disabilities have not been informed of this. There is limited evidence concerning the views and opinions of this cohort regarding the information that is needed in order for decision-making to occur at the end of life. Therefore, this study aimed to explore the perceptions of people with intellectual disabilities and families in terms of the information that is needed as part of end-of-life decision-making. Materials and Methods A qualitative approach was employed to explore the information needed by, and the decision-making ability of, people with intellectual disabilities at the end-of-life phase. One-to-one interviews were carried out with nineteen people following the obtaining of ethical approval. The constant comparative method was used to analyse the data. Results It was found that people with intellectual disabilities were comfortable with, and wished to know about, what was happening in their lives, including the existence of life-limiting conditions, so that they would be able to create a good plan for their future care. It was also expressed how it was essential to create a plan of care that allowed professionals to provide excellent care and use of which prevented the occurrence of any ambiguity. Conclusions The study found that people with intellectual disabilities, especially those with mild and moderate, are able to handle complex and sensitive information and make decisions for themselves regarding their care when adequate support is in place.
ARTRES Article
|
|
Education as a catalyst for the social inclusion of people with learning disabilities Series: British Journal of Learning Disabilities ; 49 (4) 385-392: 2021- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/bld.12432
- Accessible summary The social inclusion of people with learning disabilities is an important topic because we all have a right to participate in society. Articles in this special issue talk about how education can help to make social inclusion better so that people with learning disabilities can join in and belong, just like everyone else. The articles talk about how changes in the way people think about learning disabilities can help make education better at making social inclusion happen. They also talk about how this can happen by supporting transitions to adulthood (e.g., into paid work), learning in universities and getting people with learning disabilities involved in writing courses about health.
ARTRES Article
|
|
Ensuring meaningful access to easy-to-read information: A case study Series: British Journal of Learning Disabilities ; 48 (2) 124-131: 2020- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/bld.12306
- Accessible Summary This article is about easy-to-read information and how to make sure that it is really accessible for people with intellectual disability. We carried out research in a day centre and spoke to service users and staff about how they use easy-to-read information. We found that there are a lot of factors which influence the lives of service users with intellectual disability and the use of easy-to-read documents. Abstract Background This article presents research on the use of easy-to-read documents to ensure meaningful access to information for persons with intellectual disability. The research questions focus on the factors that influence the use of easy-to-read documents and what needs to be considered to ensure that these documents are used meaningfully. Materials and Methods A case study was carried out in a day centre for persons with intellectual disability in Malta, using a focus group, an interview and an observation session as research tools. Thematic analysis was used to analyse the data, in conjunction with the social model of disability and an adapted version of Bronfenbrenner's ecosystem model. Results The research found that the effectiveness of easy-to-read documents is contingent on a multiplicity of factors which interact with one another. Conclusion Easy-to-read forms can become more meaningful if these factors are attended to within the wider context.
ARTRES Article
|
|
Family carers managing personal budgets for adults with learning disabilities or autism Series: British Journal of Learning Disabilities ; 49 (1) 52-61: 2021- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/bld.12348
- Accessible summary Direct payments can help people with learning disabilities or autism to have good support. Often, family carers manage the direct payments for people who would find this very difficult. We asked family carers who managed direct payments to tell us why they decided to do this and what their experiences were. Family carers told us they found managing direct payments difficult and stressful at first, but this got easier over time. They also said that direct payments helped their family members to have more person-centred support. Abstract Background There are a growing number of people with learning disabilities and autism who access personal budgets in the form of direct payments in England. Although they are often involved in decisions about their support, personal budgets are usually managed by someone else, typically a parent. This study examined the experiences of carers who manage personal budgets for adults with learning disabilities or autism with a particular focus on the challenges of securing suitable support and implications for their own well-being. Methods This was a qualitative study using a descriptive phenomenological approach to investigate the lived experiences of family carers who manage personal budgets. We conducted semi-structured interviews with 13 family carers. Interview transcripts were thematically analysed using the framework approach. Results Our analysis identified five main themes. The first theme relates to why carers decide to take up a personal budget in the first place and their initial expectations. The second theme, restricted choice, highlights the difficulties in securing adequate support and services in the context of what are often described as "complex needs." The third and fourth themes relate to the tasks involved in managing a personal budget and the challenges associated with the dual role of the carer as a parent and a "professional." The fifth and final theme, mixed emotions, describes the impact on the subjective well-being of carers. Conclusions Family carers indicated that the benefits of personal budgets outweighed the difficulties and stress inherent in managing them. They need adequate support to ensure that personal budgets deliver personalised and self-directed support and greater well-being, and are sustainable arrangements.
ARTRES Article
|
|
Fathers' experiences as carers for autistic children with learning disabilities Series: British Journal of Learning Disabilities ; 49 (1) 13-22: 2021- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/bld.12349
- Accessible Summary This research explored the experience of four fathers of autistic children who also have learning disabilities. Fathers' experiences as carers are increasingly recognised in the literature; however, the studies of parental experience tend to centre mothers. The current research builds upon the recent and important focus upon fathers' experiences. The fathers in this study sometimes felt helpless and unable to fulfil the traditional role as protectors and providers, but they also had strong feelings of closeness with their children and developed new identities through the challenges and joys they experienced alongside their children. Abstract Background This small study explores the lived experience of four UK-based fathers (one black British, one white Polish and two white British) caring for at least one child with a dual diagnosis of learning disability and autism. The key aim was to get as close as possible to understanding the experience of these fathers in their role as carers. Methods The study makes use of interpretative phenomenological analysis (IPA) as an approach to gathering (via interview) and making sense of the fathers' experiences. Findings and discussion We co-constructed three themes following analysis of the interview transcripts: 'fatherhood: not doing enough, not doing it right'; 'crossing worlds: relearning how to communicate and reclaiming fatherhood'; and 'uncertain futures.' We found that, for these fathers, the experiences of anxiety and helplessness were balanced with the appreciation of their value as protectors, their shifting sense of identity and of their closeness with their children. Relationships were central throughout. Conclusions The exploration of fathers' experiences helps to highlight the less-measurable, nuanced aspects of the joys and challenges of caring for children with dual diagnoses of learning disability and autism which might be used to enhance the support provided and to inform new approaches.
ARTRES Article
|
|
Health for people with learning disabilities across the life span Series: British Journal of Learning Disabilities ; 48 (1) 1-3: 2020- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/bld.12319
ARTRES Article
|
|
In response to "Decommissioning normal: COVID-19 as a disruptor of school norms for young people with learning disabilities" Series: British Journal of Learning Disabilities ; 49 (4) 403-405: 2021- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/bld.12422
ARTRES Article
|
|
Learning from support workers: Can a dramatherapy group offer a community provision to support changes in care for people with learning disabilities and mental health difficulties? Series: British Journal of Learning Disabilities ; 48 (1) 59-68: 2020- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/bld.12312
- Accessible summary Dramatherapy groups are being used to help people with learning disabilities move from hospital back to their homes. The staff who support people to attend the groups talked about their experiences. The staff felt the groups help people stay well, build friendships and get support quickly if needed. The staff felt that the groups were helpful for themselves too as they felt supported and learned new skills. Abstract Background The UK Government's Transforming Care Agenda for people with learning disabilities has struggled to meet its goals of reducing inpatient beds and building community-based support. This article reports on the experiences of support staff who attended dramatherapy groups developed to assist transitions from an inpatient hospital and to prevent re-admissions through post-discharge support. The groups provide ongoing support and a place where relationships can be developed between supporter and those supported. Materials and Methods A focus group with a purposive sample of paid support staff. The data was synthesised using a thematic framework approach. Results Themes include: (a) new way of supporting and (b) hospital connection. The groups helped improve social interaction, friendship building, communication and self-confidence. Additional benefits include the pooling of support and a connection with professionals that enables difficulties to be caught early. Conclusions Support workers valued these dramatherapy groups, recognising how the intervention enabled people with learning disabilities to develop relationships and provide easy access to mental health professionals. Support staff also found benefits for themselves which included shared support and an increased understanding and insight into the people they support.
ARTRES Article
|
|
Lost voices part 1: A narrative case study of two young men with learning disabilities disclosing experiences of sexual, emotional and physical abuse Series: British Journal of Learning Disabilities ; 49 (2) 195-204: 2021- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/bld.12364
- Accessible Summary Two young men who have learning disabilities were students at a college. While they were there, they were sexually abused by people who were meant to care for them. When they tried to tell people, some people would not listen. Some people listened but could not understand them. They became mentally ill because of the abuse. Then, some people started to listen and help them tell their stories. Then, the police and the courts said that the two young men could not give evidence in court because of their learning disabilities. This paper matters because it writes about ways to protect people with learning disabilities from people who abuse them. We need to try and help people who have been abused to tell their stories. We need to make sure those stories are listened to. Abstract Two young men disclosed emotional, sexual and physical abuse while attending college and living with Shared Lives carers in the UK. This paper provides a narrative account of the period when the two men were exposed to the abuse, the disclosures, the investigation and the legal and safeguarding investigation outcomes. A second paper describes the therapeutic response and outcomes for the men. A review of the literature on abuse and learning disabilities highlights the difficulties in conducting research in this area. Authors find significant barriers exist to disclosing abuse and to being believed. Prosecutions are rare despite evidence that abuse may be widespread towards people with learning disabilities. This paper considers the narrative experience of the two young men, the barriers they faced to being heard and believed and how their personal accounts were discounted and eventually lost to the investigation. Lessons for practice are considered for learning disability mental health and social care professionals, education, police and legal services. Further research suggestions are made.
ARTRES Article
|
|
Lost voices part 2: Modifying psychological therapies for two young men with complex learning disabilities following alleged sexual and physical abuse: A case study in trauma recovery Series: British Journal of Learning Disabilities ; 49 (2) 205-216: 2021- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/bld.12370
- Accessible summary Two young men who have learning disabilities became mentally ill. They said that they had been hurt by their carers. They said that the carers hit them and made them have sex with them. They had post-traumatic stress disorder, which made them scream, cry, hurt themselves and have frightening nightmares. They were helped by a Mental Health of Learning Disabilities Team. They talked to a psychologist which helped them to understand what happened to them. Talking to the psychologist helped them to get better. They could do the things that they enjoyed again. The therapy took 2 years. This paper writes about new and better ways to help people who have learning disabilities recover when someone has hurt them or frightened them. Abstract Background This is the second of two papers describing a case study of two young men with complex learning disabilities. They presented with severe trauma-related mental distress following alleged sexual, emotional and physical abuse. This paper concerns the psychological intervention and support provided for them and their families over a period of 2 years. There is a lack of research, guidance and evaluated therapeutic models for the assessment and treatment of people with complex learning and communication needs following abuse. Methods In this case, therapeutic interventions were modified from systemic and narrative therapies and interpersonal psychotherapy. Creative techniques included acting, drawing and walks to develop a therapeutic relationship, to experience affect in a contained and safe way and to support the development of coherent narratives. Results Recovery moved through stages of remembering and recounting, understanding and assimilating and improved mental well-being and coping strategies. Conclusions Modified models of therapy proved effective and further research recommended. The personal strengths and family support of the men were critical in progressing recovery.
ARTRES Article
|
|
Making sense of complexity: A qualitative investigation into forensic learning disability nurses' interpretation of the contribution of personal history to offending behaviour Series: British Journal of Learning Disabilities ; 48 (3) 242-250: 2020- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/bld.12325
- Accessible Summary The role of an individual's personal history is important in influencing their development, especially whether they are likely to offend or engage in violent behaviour Learning disability nurses relationships with those with a history of violence or offending will improve with a more informed knowledge of how someone's offending behaviour is related to their background People with a learning disability can be supported best when the complexity of their lives is fully understood and properly informs the therapeutic relationship. Abstract Background There is growing recognition that an individual's personal history can be extremely influential in shaping their future experience, though there has been a limited exploration in the context of learning disability and offending behaviour. Method Research questions related to participant interpretation of offending behaviour and individual and service responses. A series of focus groups comprising learning disability forensic nurses were conducted across all secure settings, high, medium and low. Results Three themes were produced: interpreting offending behaviour; the impact of personal history; responding therapeutically. The difficulties relating to understanding the relationship between offending behaviour and personal history significantly informed the construction of the most effective therapeutic relationships. Conclusions An increased focus on the impact of someone's background might inform nursing as it seeks to deliver care to individuals with increasingly complex needs in a time of service transition.
ARTRES Article
|
|
Narrating personal experience of living with learning disabilities and mental health issues in institutional and community settings: A case study Series: British Journal of Learning Disabilities ; 48 (4) 323-331: 2020- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/bld.12338
- Accessible summary This is a case study about a man with learning disabilities who has mental health issues. The case study describes the way that he told a researcher about his life. Thirty years of his earlier life were spent in a long-stay hospital in England, UK and more recently he has lived in a community setting with five other people. This research is important as it assists us to understand the experiences of people with learning disabilities who have mental health needs. Abstract Background Historically, the emotional lives and mental health needs of adults with learning disabilities received scant attention, especially when the policy of institutionalisation was at its zenith in the UK. Materials and Methods This case study employed biographical narrative interviews based on a psychosocial approach. The main sources of data production were two loosely structured, audio-taped, interviews with a man with learning disabilities. This approach uses free association to elicit an individual's stories about his lived experiences. Additional information was acquired from consultations with key care staff and clinical records maintained by the man's service provider. Results Data revealed insights into the biography of this man who had a diagnosed mental health disorder. These data recall his personal journey through the care system which took place during an important historical period encompassing both long-term institutionalisation in segregated settings, and the subsequent implementation of the policy of community care in the UK. He recalls positive and negative experiences while residing in a long-stay hospital, and the related thoughts and feelings about his life in a community setting in more recent years. Conclusion This case study contributes to an increasing body of studies that perceive the use of in-depth interviewing of individuals with learning disabilities as having high ecological validity in the development of authentic knowledge, not readily available through other methods used in the co-production of data.
ARTRES Article
|
|
Not a journal about people with learning disabilities without people with learning disabilities Series: British Journal of Learning Disabilities ; 48 (2) 81-83: 2020- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/bld.12328
- Accessible summary This is my first editorial as chief editor. It is an honour to be editor. The journal supports the rights of people with learning disabilities. It works to improve their lives. Editors before me helped to make the journal special. They encouraged people with learning disabilities to get involved in writing papers. One special issue of the journal was edited by researchers with learning disabilities in an inclusive research group. Self-advocates have said "if it's about us we should be able to write in it, otherwise what's the point?" Thanks to them we now have easy read guidance on how to write a paper and how to submit it to the journal. I will make sure we have good guidance on how to review or quality check papers. We want papers that are good at involving and respecting people with learning disabilities. We want papers to be good research that says something new too. I will also introduce In Response papers, where people with learning disabilities respond to the issues in other papers. This will help us to see where the papers are relevant to people's lives. You can now write up to 7,000 words in papers for the journal. Before it was just 5,000 words. There are new editors: Alex Kaley, Edurne Garcia Iriate, Elisabeth Olin, Lucy Series, Tim Stainton, Vasilis Strogilos, Iva Strnadová, Liz Tilley, Ben Simmons and Simo Vehmas. I end with a word about COVID-19. It means we need to hear the voices of people with learning disabilities like never before. We need to challenge the prejudice in who gets medical help. We should be proud of the great easy read information that people are sharing. And the creative ways people are finding to stay connected, and to stay safe and calm.
ARTRES Article
|
|
People with learning disabilities and access to mainstream arts and culture: A participatory action research approach Series: British Journal of Learning Disabilities ; 48 (2) 106-114: 2020- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/bld.12303
- Accessible summary Ten people with learning disabilities were trained to work with a university to carry out research about people with learning disabilities, arts and culture. They spoke to 82 people with learning disabilities to find out what gets in the way of attending arts and culture activities. The research found that transport, cost and needing support often got in the way of people being able to go to activities and people needed to feel safe and welcomed when they attend an arts and culture activity. It was found that including more people with learning disabilities in making decisions about art and culture could help more people attend activities. It was also found that involving more people with learning disabilities in training people who work in arts and culture could help people feel safe when they go to activities. Abstract Background Arts and culture have proven benefits. However, access to arts and culture is not consistent. For people with learning disabilities, arts and culture are often considered therapeutic activities, and therefore, the needs of people with learning disabilities in accessing mainstream arts and culture are often overlooked. This research explores how people with learning disabilities experience culture, the barriers they experience in accessing it and how cultural sector organisations can improve access to their activities and events. Methods A participatory action research approach was adopted for the study. Interviews and focus groups were conducted. The findings were analysed and resulting themes discussed with the peer research team. The group codelivered a workshop aimed at representatives from the cultural sector to share their findings. Results The results from the focus groups and interviews indicated that for people with learning disabilities, community is central to their experience of arts and culture. The study found that transport, cost and needing support to attend cultural activities were barriers to access, whereas consideration of physical access and "emotional access" needs improved access for people with learning disabilities. Recommendations include improved consultation with people with learning disabilities about cultural opportunities and the formation of cocreated training delivered with people with learning disabilities to support cultural sector staff to offer a warm and safe environment. Conclusions The findings from the study provided useful learning for cultural sector organisations. However, both the findings of the research and the process of participatory action research were noted as being significant for how the cultural sector can build an ethos of inclusivity to ensure their offer is relevant and accessible to people with learning disabilities.
ARTRES Article
|
|
Person-centred respite supports: The perspectives of adults with intellectual disabilities in Ireland Series: British Journal of Learning Disabilities ; 48 (4) 281-290: 2020- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/bld.12347
- Accessible Summary This study looks at the experiences of adults with intellectual disabilities using respite services in Ireland. Some adults stayed overnight in a respite house, and others were part of evening and weekend groups. Overall, the adults were happy with their respite supports. They suggested nine important ways that respite services can meet a person's needs and support them to do the things they want to do. The adults said it was important to have fun, time and space, choice, and to be independent at respite. They should have a chance to build friendships and be in groups that work well together. It is important to get on well with staff too. Respite supports must meet different needs. Persons with disabilities should take part in the design and management of respite supports. A national policy for respite in disability services is needed in Ireland. The views and suggestions of persons with disabilities should be considered if a policy is developed. Abstract Background Respite supports are highly valued by persons with disabilities and their families/carers. In Ireland, there has been regular commentary in relation to a lack of respite services, with users and other stakeholders reporting limited access, inequity of provision, and long waiting lists for support. Materials and Methods Much of the research on respite focuses on the views of carers, with little account of the experiences of persons with disabilities. This study examines the perspectives of twenty-eight adults with intellectual disabilities; most are regular users of traditional and/or alternative respite services. Information was gathered through individual interviews and focus groups. Findings Participants identified nine key elements of a person-centred respite service; fun, time and space, choice, independence, friendships, compatible groupings, positive relationships with staff, flexible supports, and user involvement in service design and delivery. Conclusions Person-centred supports should enable individuals to achieve maximum well-being and flourish in all aspects of their lives. This study found that at a personal level, respite services and the interactions that occur within them are person-centred in that they support the individual to do the things they want to do, make everyday choices, try new activities, develop positive relationships, and have a good quality of life. However, at the level of service planning and decision-making, there is less evidence of a person-centred approach. Participants reported having little involvement in the design and delivery of respite services at local or national level. The development of a respite policy in Ireland, that considers the views of respite service users, would be welcome.
ARTRES Article
|
|
Recognising human rights in different cultural contexts: the UNCRPD. Kakoullis E.J. and Johnson K. (Eds.) Palgrave Macmillan, 2020, ISBN: 978-981-15-0785-4 Series: British Journal of Learning Disabilities ; 49 (4) 484-485: 2021- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/bld.12406
ARTRES Article
|
|
Relationships matter! - Utilising ethics of care to understand transitions in the lives of adults with severe intellectual disabilities Series: British Journal of Learning Disabilities ; 49 (3) 329-340: 2021- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/bld.12380
- Accessible summary People with severe and profound intellectual disabilities need others to support them in most areas of their life. It can be difficult to communicate with people about change and transitions have been identified as an area of concern. As part of this research, we spent time with six adults with severe and profound intellectual disabilities. We talked to their families and professionals about their transitions and how they were involved in decisions that were made. Relationships people had with family members and key staff facilitated their engagement and experiences of the world. Our findings show that it is important that those who know the person well are closely involved in the planning of transitions. There should be a greater focus on maintaining the relationships that people have so that we can build bridges between settings and improve transitions for people with intellectual disabilities. Abstract Background Within the current literature, there is a focus on early transition experiences, such as people's school years, while adulthood remains a lesser researched chapter in the lives of people with intellectual disabilities. Furthermore, most studies focus on those with mild or moderate intellectual disabilities and people with severe or profound intellectual disabilities are often excluded from research. Methods This article explores the transition journeys of six adults with severe intellectual disabilities, including transitions from school to adult services and moving out of the family home. Data collection involved observations, document reviews and interviews with families and professionals in Scotland. Taking an ethics of care perspective, our focus was to explore in how far each person had people in their lives able to listen to them and if, in turn, those close to them were listened to during times of transition. Findings Our findings demonstrate that transitions are complex processes that occur across different systems. Additionally, our findings emphasise the importance to consider relationships that are available to people within their adult lives when planning and supporting transitions. Combining interviews with observations helped us to see how the six adults showed agency and were communicating their preferences through the relationships they had with people within their immediate environment. Conclusions The need to reconceptualise participation from a relational and interdependent perspective is stressed to facilitate the involvement of people with severe intellectual disabilities within decision-making processes.
ARTRES Article
|
|
Response to Birdsey (2020) "I don't wanna be mad and sad": Using individual systemic therapy to help manage anger and low mood in an adult with a learning disability Series: British Journal of Learning Disabilities ; 49 (2) 191-194: 2021- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/bld.12384
ARTRES Article
|
|
Response to Chapko et al. (2021) "In the physical to digital transition with friends: A story of performing inclusive research together no matter what life throws at you" Series: British Journal of Learning Disabilities ; 49 (3) 282-286: 2021- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/bld.12415
ARTRES Article
|
|
Special Olympics: Athletes' perspectives, choices and motives Series: British Journal of Learning Disabilities ; 48 (4) 332-339: 2020- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/bld.12295
- Accessible summary There is a need for more voiced opinions from Special Olympic (SO) athletes in contemporary literature. Five SO athletes presented their own views on their experiences of participating in sport. SO athletes would welcome more autonomy, responsibility and roles in their everyday sporting participation. Implications for coaches and parents are presented as a consequence of sporting involvement. Abstract Background In the past, academic literature and research relating to the Special Olympics (SO) have focused mainly on the parents', professionals' and coaches' views, with some concentrating on the effects of SO on athletes' quality of life. Relatively little has concentrated on the athlete's own perspectives. Therefore, this study set out to examine the under-researched area of SO athletes' opinions of taking part in sporting activities and their satisfaction during training and competition. Materials and Methods Five athletes from one SO athletic club agreed to take part in the study. Thematic analysis was used for generating themes in relation to participants' responses. Results Four themes were identified: (a) platform for voice; (b) intense emotions; (c) social reasons to participate; and (d) nutrition, health and sport. Conclusions SO athletes' views suggest the need for changes in practice during training and competition. Recommendations are made with the view to further support SO athletes' needs.
ARTRES Article
|
|
The experiences of adults with intellectual disabilities attending a mindfulness-based group intervention Series: British Journal of Learning Disabilities ; 49 (2) 162-178: 2021- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/bld.12359
- Accessible summary Mindfulness helps us to "slow down" and notice how we are thinking and how we are feeling. When we notice our thoughts and our feelings, we can choose to do the things that help us to feel better. We wanted to know what people with learning disabilities thought of mindfulness. Nine people with learning disabilities told us what they thought about mindfulness. We found out that: People enjoyed mindfulness activities and the chance to socialise with other people People showed some understanding of mindfulness People could do the mindfulness activities Abstract Background A growing body of research supports the efficacy of mindfulness-based intervention programmes (MBPs) for people with intellectual disabilities. Existing literature calls for focus on the experiences of people with intellectual disabilities participating in MBPs. Materials and Methods This study explored the experiences of nine adults with intellectual disabilities attending an eight-week group MBP delivered within the community. Two audio-recorded group discussions and seven semi-structured interviews were thematically analysed. Results Themes were as follows: participants' experience of the group as a meaningful and enjoyable activity; opportunities for socialisation, sharing, friendship and support; the significance of participant-facilitator relationships; and how participants understood and experienced the mindfulness exercises and concepts. Conclusions Some understanding of mindfulness was evident, and participants demonstrated an ability to engage in mindfulness exercises. Findings inform the development of effective MBPs for people with intellectual disabilities.
ARTRES Article
|
|
The importance of relationships for people with learning disabilities - in life and in research Series: British Journal of Learning Disabilities ; 48 (4) 259-260: 2020- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/bld.12353
- Accessible Summary Many of the papers this time are all about the relationships of people with learning disabilities. This may be loving or sexual relationships, relationships with staff, research, sport or friends. This issue has the first In Response article. Here people with learning disabilities share their response to one of the papers in the issue. Everyone involved learned greatly from the process. Some of the papers are based on inclusive research - where people with learning disabilities were also researchers - and many include the experiences of people with learning disabilities. The papers highlight how loneliness can be a problem. Two papers show the challenges for people forming relationships in their new settings if they have come out from institutional care. Papers in this issue show the importance of open honest communication such as when talking about planning for the end of life. The final paper shows how staff need to be compassionate in their care roles.
ARTRES Article
|
|
The use of Intensive Interaction within a Positive Behavioural Support framework Series: British Journal of Learning Disabilities ; 49 (2) 129-137: 2021- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/bld.12367
- Accessible summary Intensive Interaction is an approach that supports the development of essential communication skills, and social and emotional relationships. Positive Behavioural Support (PBS) is a framework for developing the quality of life for people who use challenging behaviour. Intensive Interaction may be used in all the phases within a PBS framework. No previous articles on the use of Intensive Interaction within PBS could be found. The use of Intensive Interaction in PBS is described for three people. Abstract Background Positive Behavioural Support (PBS) provides an overarching framework for supporting quality-of-life improvements for people who use challenging behaviour. Rapport, or the lack of it, is well understood as a setting factor for some challenging behaviours. Intensive Interaction is an approach that, among other possible outcomes, can develop rapport and feelings of safety, security and connection. Method Within an NHS Trust, the Intensive Interaction Service works in partnership with the Intensive Support Team. We present case descriptions of people who used challenging behaviour and received Intensive Interaction support. Changes are described using staff and family interview data. The Intensive Interaction techniques that helped develop rapport at each PBS phase are described. Results Intensive Interaction was used in all PBS phases. It played a role in preventing placement breakdown for one individual. Conclusion Intensive Interaction should be considered at initial assessment within PBS so that immediate and important improvements can be made to the person's social and communication experience. It is hoped that Intensive Support Services and all PBS practitioners will use it.
ARTRES Article
|
|
The well-being of people with learning disabilities Series: British Journal of Learning Disabilities ; 48 (3) 173-174: 2020- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/bld.12341
- Accessible summary The papers this time are all about the well-being of people with learning disabilities. Some papers are about emotional well-being, such as feeling secure, dealing with stress and anger, coping when someone dies, having a good life and planning for death. Some papers are about physical well-being, particularly keeping healthy and what some medicines can do to us. One paper is about having the money needed to keep well and live a good life. There is now an easy read guide to what the journal is about and how to judge papers for the journal. You can follow us on Twitter too, @BJLD_Wiley.
ARTRES Article
|
|
Transition stories: Voices of school leavers with intellectual disabilities Series: British Journal of Learning Disabilities ; 49 (4) 456-466: 2021- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/bld.12433
- Accessible summary This paper focuses on the transition stories of young people with intellectual disabilities. People with intellectual disabilities have the lowest participation rates in further education training and employment. A model of supported transition places the young person at the centre of the process. Young people with intellectual disabilities have the same dreams and aspirations for their lives as everybody else. This paper found that the model of supported transition aligns with proposed national polices in the Republic of Ireland. Abstract Background The principal destinations for school leavers with intellectual disabilities from special schools in Ireland are further education (FE) through providers such as the National Learning Network or training and employment (TE) within adult day services and rehabilitation centres. In 2015, a number of inherent barriers to participation in FE/TE for young people with intellectual disabilities were identified. These were found to be linked to attitudes, stigma and low expectations of their capabilities. This resulted in the development of a supported transition model WALK PEER (Providing Equal Employment Routes). Methods This study explored the experiences of school leavers with intellectual disabilities who were engaging with the WALK PEER model. Data were collected from a purposive sample of 31 students with intellectual disabilities from two special schools: Group 1 (Pre-transition) students in the penultimate year of formal education, Group 2 (Transitioning) students in the final year of formal education and Group 3 (Post-transition) had left school two years previously. Findings Engaging in the supported transition programme provided young people with access to information, options, confidence and some of the hard and soft skills required for successful transition into education and employment contexts. Conclusions The findings demonstrate a strong correlation between support programmes, transition planning and positive transitions, which is critical if young people with intellectual disabilities are to realise their goals. The research proposes a new model of "Supported Transition" that has clear implications for the development of a national transition policy as directed by the Comprehensive Employment Strategy.
ARTRES Article
|
|
Transitions in lives of people with intellectual disability Series: British Journal of Learning Disabilities ; 49 (3) 263-270: 2021- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/bld.12413
- Accessible summary Transitions in the lives of people with intellectual disability is an important topic. Articles in this special issue talk about transitions that research articles do not often discuss. They explore transitions from the viewpoint of people with intellectual disability. Authors from many countries contributed: Australia, Indonesia, Mexico, Norway, South Africa, UK and USA. Three self-advocates from Australia tell us their transition stories.
ARTRES Article
|
|
Value, vulnerability and voice: An integrative review on research assent Series: British Journal of Learning Disabilities ; 48 (2) 154-161: 2020- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/bld.12309
- Accessible summary Everyone can be part of research. Some may need extra time and attention to decide if they want to take part in a research study, also called assent. This paper gives ideas to support people with learning disabilities in making their own choices. Abstract Background Research assent is a term used with those deemed vulnerable, for whom modifications and additional considerations are required when requesting their voluntary agreement to participate in research. Methods The authors' research experiences and inclusive research principles were integrated with a review of literature on research assent with individuals with significant learning disabilities. Findings Vulnerability can be reconceived through the value and voice of participation in research. We provide practical suggestions for those who oversee social science research, as well as offer guidance to researchers considering inclusive research but for whom practical considerations are required. Conclusion To enhance participant diversity and a generative contribution to knowledge, consideration about research assent is needed. The absence from research can perpetuate exclusion from society.
ARTRES Article
|
|
Video reflection: An emerging tool for training client-centred communication skills in staff supporting adults with learning disabilities in an education setting Series: British Journal of Learning Disabilities ; 48 (2) 132-141: 2020- https://ihc.idm.oclc.org/login?url=https://onlinelibrary.wiley.com/doi/abs/10.1111/bld.12307
- Accessible summary Video reflection is one of the best ways to help staff develop their communication skills provided the training setting is supportive. Good communication skills are important so staff can support people with learning disabilities access education. This study filmed education staff working with people with a learning disability at college. The staff watched the video so they could see themselves and think about what they did well and what they could improve on. The results found that staff were better at communicating and more confident using their communication skills after watching the video. Abstract Background Speech and language therapists (SLTs) contribute to communication with adults with learning disabilities by providing training to the networks that support them. The requirements for successful communication with this population are frequently complex and necessitate an effective training medium to transfer the target knowledge and skills. Video has increasingly been used as a tool to facilitate self-reflection and behaviour change. Currently, there is limited research into the effectiveness of video-based training in education settings for adults with learning disabilities. Therefore, this study investigated the effectiveness of video reflection training (VRT) for support staff in a college for adults with learning disabilities. Materials and Method Ten staff members with diverse skill sets completed three VRT sessions aimed at improving their use of communication strategies. Training evaluation measures were taken before and after VRT and included use of communication strategies, self-efficacy, training pre-conceptions and training experience. Results Overall, the majority of staff made gains either in their use of communication strategies or in their self-efficacy ratings. Yet, study limitations restrict conclusions regarding whether VRT itself caused these outcomes. Interpretation revealed five factors relating to the effectiveness of VRT: tailoring training to staff's pre-existing skills, practising facilitation techniques, providing acceptable training, increasing self-reflection skills and using video as a reflection tool. Conclusions Regardless of the limitations, this study provides findings that VRT is a useful tool for training support staff to use client-centred communication skills in an education setting. Future training programmes should be individualised and tailored to staff depending on their skill sets.
ARTRES Article
|
