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'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.
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"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.
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"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.
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"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.
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"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.
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"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.
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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.
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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.
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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
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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
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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.
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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
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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
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