Search results for ‘Subject term:"learning disabilities"’ Sort:
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Fathers' experiences as carers for autistic children with learning disabilities
- Authors:
- CAMERON Harriet, COOPER Louise
- Journal article citation:
- British Journal of Learning Disabilities, 49(1), 2021, pp.13-22.
- Publisher:
- Wiley
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. (Edited publisher abstract)
Peter and friends talk about Covid-19 and having a learning disability and/or autism
- Authors:
- CRONIN Peter, et al
- Publisher:
- Penge Publishers
- Publication year:
- 2020
- Pagination:
- 429
- Place of publication:
- London
This book explores what it means having a learning disability and/or autism during the COVID-19 pandemic. It contains stories from people in a variety of different situations, including workplaces, family homes, in supported living, people in hospital including patients or staff in general hospitals, Assessment and Treatment Units and Medium Secure Units. The book includes contributions from Australia, Austria, Canada, England, Ghana, Ireland, Malaysia, Netherlands, Scotland, Spain, South Africa and Wales by people with learning disabilities, their families and those supporting them during the pandemic. Chapters include: all about COVID and why we wrote the book; insights and experiences from people with learning disabilities; stories from parents and carers; individuals, teams and organisations supporting people with learning disabilities through the virus; mental health, technology and the 5 Ways to Wellbeing – coping with the pandemic. (Edited publisher abstract)
Love, learning disabilities and pockets of brilliance: how practitioners can make a difference to the lives of children, families and adults
- Author:
- RYAN Sara
- Publisher:
- Jessica Kingsley
- Publication year:
- 2020
- Pagination:
- 176
- Place of publication:
- London
This book shares experiences of what brilliant care and support can look like for families with learning disabled or autistic children and adults. The author steers clear of jargon and 'doublespeak' to conjure authentic experiences of families. Speaking with families and professionals, she conveys the love, laughter and joy which binds families and the harsh realities many face; of separation from loved ones, substandard care and frustration and helplessness in the face of inflexible services. From their experiences, the author looks to capture those pockets of brilliance that families have encountered, and which outstanding practitioners have pioneered, for us all to learn from. (Edited publisher abstract)
Lived experience of restraint, seclusion and segregation (RSS): stories and recommendations for safer care
- Authors:
- ADVONET, CHANGE
- Publishers:
- Advonet, Change
- Publication year:
- 2020
- Pagination:
- 23
- Place of publication:
- Leeds
This report aims to put the authentic voices of people with lived experience of restraint, seclusion and segregation (RSS) in care settings at the heart of the conversation about safe and effective care. Participant spoke of being afraid, scared, angry, upset when experiencing RSS; they felt that staff in healthcare settings lacked empathy and were not person-centred; and that there was a lack of adequate staffing in care settings. They saw the impact that poor resourcing, lack of training, and unsupportive cultures had on the staff who were at the frontline of their care. Some participants had positive experiences of RSS. They were clear that this was when it was used as part of a person-centred de-escalation strategy, with compassion, and as a last resort where safety was a concern. However, participants also provided very many examples of bad practice in implementing restraint, seclusion and segregation. People spoke of many experiences where they were physically, psychologically and emotionally harmed. People with lived experience expect: robust, personalised and appropriate training for care staff; accountability and action, at all levels, including funding commitments from the government for better, community-led care models; a stronger role for advocacy, including peer and family advocacy, and a more co-operative and involving culture within care providers. Most of our participants voiced the view that restraint, seclusion and segregation should be stopped, and people should be cared for in their own communities with appropriate support. (Edited publisher abstract)
Parenting Chrissy: a transformational journey through the hazards of the disability system
- Author:
- GREGORY Jane
- Publisher:
- Centre for Welfare Reform
- Publication year:
- 2017
- Pagination:
- 41
- Place of publication:
- Sheffield
This autoethnography explores the journey of a mother of a woman with intellectual disabilities whose complex needs and behaviour has presented significant challenges to services. The biographical accounts include the experiences of receiving the daughter’s diagnoses of a rare chromosome disorder and autism in her adulthood. The former allowed a unique story which emerged from phenomena that is being swept in by the tide of the technological revolution in the detection of gene mutations and structural genomic variations causing learning disability. Within the theoretical frameworks of critical disability studies, social constructionism and family systems approaches, the author weaves 31 years of autobiographical accounts with cultural and structural factors that influence the experiences of parents of children with learning disabilities. Included in the investigations were the uncovering of new knowledge about the culture of intellectual disability and an examination of the events leading up to the daughter’s four-year incarceration in an institution. Evidence of oppressive, dehumanising social policies and practices intersect with new themes, including the journey from asking ‘why?’ to knowing, and chasing new ‘fixes’ to the liberating possibilities of policy changes and transformative validation. (Edited publisher abstract)
Working with people with autism: the autistic perspective
- Author:
- SOCIAL CARE INSTITUTE FOR EXCELLENCE
- Publisher:
- Social Care Institute for Excellence
- Publication year:
- 2014
- Pagination:
- 11 minutes 56 seconds
- Place of publication:
- London
- Edition:
- Revised
In this film, we see how Scott, a man with autism and learning disabilities, and Marie, a professor with Asperger’s Syndrome, learn to make sense of society, with the support of colleagues and family members. Scott’s parents speak of the rituals he employs to cope with daily life and the behaviours that are triggered when the world does not make sense to him. Marie talks of the challenges she faces in learning the rules of professional communication and the techniques she uses to interact with others and manage her anxieties. She makes the point, however, that these anxieties come about because society does not yet understand people with autism, and disables them as a result.
Who I am matters: experiences of being in hospital for people with a learning disability and autistic people
- Author:
- CARE QUALITY COMMISSION
- Publisher:
- Care Quality Commission
- Publication year:
- 2022
- Place of publication:
- London
This report looks what people with a learning disability and autistic people experience when they need physical health care and treatment in hospital. We looked specifically at: access to care; communication; care and treatment in hospital; other equality characteristics and quality of care; workforce skills and development. People have a right to expect: access to the care they need, when they need it and that appropriate reasonable adjustments are made to meet people's individual needs; staff communicate with them in a way that meets their needs and involves them in decisions about their care; they are fully involved in their care and treatment; the care and treatment they receive meets all their needs, including making reasonable adjustments where necessary and taking into account any equality characteristics such as age, race and sexual orientation; their experiences of care are not dependent on whether or not they have access to specialist teams and practitioners. However, people told us they found it difficult to access care because reasonable adjustments weren't always made. Providers need to make sure they are making appropriate reasonable adjustments to meet people's individual needs. There is no 'one-size-fits-all' solution for communication. Providers need to make sure that staff have the tools and skills to enable them to communicate effectively to meet people's individual needs. People are not being fully involved in their care and treatment. In many cases, this is because there is not enough listening, communication and involvement. Providers need to make sure that staff have enough time and skills to listen to people and their families so they understand and can meet people's individual needs. Equality characteristics, such as age, race and sexual orientation, risked being overshadowed by a person's learning disability or autism because staff lacked knowledge and understanding about inequalities. Providers need to ensure that staff have appropriate training and knowledge so they can meet all of a person's individual needs. Specialist practitioners and teams cannot hold sole responsibility for improving people's experiences of care. Providers must make sure that all staff have up-to-date training and the right skills to care for people with a learning disability and autistic people. (Edited publisher abstract)
The big conversation report
- Authors:
- JOHN Debbie, CATLEY Angela
- Publisher:
- Community Catalysts
- Publication year:
- 2021
- Pagination:
- 22
- Place of publication:
- Harrogate
A review of what people do in the day and daytime support for people with a learning disability and/or autism in Merton, referred to as the Big Conversation. The report is informed by an engagement process that took place between May and July 2021 and was designed to hear from people who have a stake or interest in daytime support for people with a learning disability and/or autism in Merton. In total 381 people contributed to the Big Conversation. Almost 70% of these were people with lived experience of learning disability and/or autism. Lots of people did more than one thing during the week. They did different things at different times. Lots of people liked day centre, school or college. Friends and family were important to most people with sports teams and helping people also mentioned regularly Key findings: 81.5% of respondents were satisfied with the support they get during the day. 63% of families of adults said that the day services offer what their family member needs very well or well. An interactive version of this report is also available and linked to this record. (Edited publisher abstract)
Experience of children and young people cared for in mental health, learning disability and autism inpatient settings
- Author:
- NATIONAL INSTITUTE FOR HEALTH RESEARCH
- Publisher:
- National Institute for Health Research
- Publication year:
- 2021
- Place of publication:
- London
This themed review explores the experience of young people with mental health problems, learning disability or autism in specialist inpatient mental health care. A young person may require admission if their disorder means that they are at high risk of self-harm or pose a risk to others. They may also be admitted if they need more intensive treatment and assessment than is possible in a community setting. This Themed Review does not cover young people's experience of inpatient paediatric care (for physical needs) or issues such as inappropriate admission to adult mental health services. Overall, we identify four key influences on how children and young people experience inpatient care. These are drawn from the research evidence base, but also from the experiential evidence provided by children, young people and their parents. The four themes are: quality of relationships; normality; use of restrictive practices; expectations and outcomes. The review identifies three key action points to address this significant area of need; recognise the interdependence of experience, treatment outcomes, and other factors; promote timely identification and action to address unmet needs; and equip staff with the resources, capacity and authority to improve experience. (Edited publisher abstract)
“It put control back onto my family situation”: family experiences of positive behaviour support
- Authors:
- BOTTERILL Sinead, et al
- Journal article citation:
- Advances in Mental Health and Intellectual Disabilities, 13(3/4), 2019, pp.91-101.
- Publisher:
- Emerald
Purpose: Positive behaviour support (PBS) is currently considered best practice for managing challenging behaviour in young people with intellectual and developmental disabilities. A key principle of PBS is that all members of the person’s support network participate in the assessment and intervention. It is, therefore, important to understand what factors act as facilitators or barriers to family engagement; however, research in this area is limited. The purpose of this paper is to conduct a novel piece of qualitative research analysis into experiences of family members of young people who have received family-based PBS. Design/methodology/approach: Eight parents of a young person with an intellectual or developmental disability who had received PBS were interviewed about their experiences and factors they found helpful and hindering in terms of their engagement. Thematic analysis allowed a detailed and robust interpretation of the qualitative data. Findings: Five superordinate themes were identified, namely, PBS is more than just strategies, considering the family context, the therapist/family relationship, acknowledging challenges and the ongoing nature of the problem and supporting family member change. Research limitations/implications: Although research was rigorously conducted, the small sample size mean findings should be considered preliminary. Originality/value: The literature related to family engagement in PBS is limited and largely based on the opinions of professionals. This study identified factors that parents themselves felt were helpful and hindering in terms of their engagement and offers practical suggestions for services and future research. (Edited publisher abstract)