Search results for ‘Subject term:"learning disabilities"’ Sort:
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Ask listen do: making conversations count in health, social care and education. Top tips for families and carers
- Author:
- NHS ENGLAND
- Publisher:
- NHS England
- Publication year:
- 2018
- Pagination:
- 8
- Place of publication:
- Leeds
Booklet to help families, parents and carers of those with a learning disability or autism give feedback, raise concerns and make complaints across education, health and social care. It provides information on the difference between giving feedback, raising a concern or making a complaint. It also provides tips to help people be confident about having conversations with people in all the organisations involved in the lives of those they care for and to feel more empowered to navigate the complex systems of feedback, concerns and complaints. (Edited publisher abstract)
Whoever shouts the loudest: listening to parents of children with disabilities
- Authors:
- RYAN Christian, QUINLAN Elizabeth
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 31(Supplement S2), 2018, pp.203-214.
- Publisher:
- Wiley
Background: Elevated stress is common among parents of children with disabilities. The parents’ perspective and evaluation of services have a significant impact on their well-being and adaptation to their child's disability and is a source of information for service improvements. This study explores parental perceptions of communication and collaboration between parents and health and education staff in the context of an imminent reconfiguration of disability services. Methods: A qualitative study was conducted using four focus groups with parents (n = 24) of children with disabilities who attend various educational and health services. Results: Thematic analysis revealed five key themes: Us versus them, lack of child/family centeredness, resources, keyworker and uncertain access to a complex system. Conclusions: Parents want greater collaboration between parents and professionals. They identified a keyworker as a potential solution to the current system that is not child-centred. This would also lessen the burden associated with high levels of advocacy. (Publisher abstract)
When satisfaction is not directly related to the support services received: understanding parents' varied experiences with specialised services for children with developmental disabilities
- Authors:
- ROBERT Marie, LEBLANC Line, BOYER Thierry
- Journal article citation:
- British Journal of Learning Disabilities, 43(3), 2015, pp.168-177.
- Publisher:
- Wiley
Parents of children with autism or intellectual disabilities are more susceptible to stress and have a greater burden of adversity than other parents. Their well-being and satisfaction greatly depend on the system's response of finding them formal support and the help they need. This study proposes an interpretive approach, based on 15 parents' experiences, to find and understand the strengths and weaknesses of specialised support services. The research also aims to obtain data on parents' experiences in order to identify the conditions and the perceptions on which feeling satisfaction or dissatisfaction is based. The situations that were considered positive are all directly related to the professional concrete support parents say they received (e.g. ‘working with’ their child to improve communication with him or her, understanding his or her issues, and managing difficult behaviours). However, the overall experience of each parent has either a dominant positive or a dominant negative connotation. The parents' satisfaction or dissatisfaction appears to be constructed from two criteria: (i) whether parents see themselves as experts or non-experts on the situation of their child and (ii) parents' opinions on the purpose or goal of the intervention or of the services they received. (Edited publisher abstract)
Parents' accounts: factors considered when deciding how far to involve their son/daughter with learning disabilities in choice-making
- Author:
- MITCHELL Wendy
- Journal article citation:
- Children and Youth Services Review, 34(8), August 2012, pp.1560-1569.
- Publisher:
- Elsevier
This study investigated factors considered by parents of young people with learning disabilities when deciding their own and their child's role in a range of significant choices about their child's life. Items considered included health, social care and education. Participants included 14 parents recruited from 11 families participating in a longitudinal qualitative study based in England. Parents' accounts demonstrated a continuum of parental involvement ranging from young people being unaware a choice was taking place to young people being fully involved in choice-making. Parents did not always adopt the same approach to choice-making; different approaches to their own and their son/daughter's level of involvement emerged when parents discussed different choices. Although young people's level of understanding was considered, it was not always the most important factor – these factors included the parents' views on the nature of the choice, protecting their child, parents' personal attitudes/beliefs and confidence in practitioner knowledge. Implications for practitioners working with families of young people with learning disabilities are discussed.
The accessibility of general NHS services for children with disabilities
- Authors:
- WHARTON Sarah, HAMES Annette, MILNER Helen
- Journal article citation:
- Child: Care, Health and Development, 31(3), May 2005, pp.275-282.
- Publisher:
- Wiley
Through conversations with members of a parent-run support organization, mixed concerns were identified about the accessibility of general National Health Service (NHS) services for children with disabilities. A questionnaire, aimed at uncovering the main issues related to general health services for children with disabilities was designed with representatives from the parent-run support organization. The questionnaire was administered as part of a semi-structured interview with 25 parents of children with disabilities (mainly learning disabilities). Eight themes were reported 'preparation', 'flexibility', 'parking', 'physical space', 'waiting areas and consultation rooms', 'health professionals' understanding and knowledge of disabilities, particularly around communication', 'on the wards' and 'overseeing care'. Themes are presented with parents' useful comments and suggestions. As the themes are wide ranging it is suggested that the research be repeated, focusing in on particular areas of general NHS services.
Planning care for children in respite settings: hello, this me
- Authors:
- LAVERTY Helen, REET Mary
- Publisher:
- Jessica Kingsley
- Publication year:
- 2001
- Pagination:
- 171p.,bibliog.
- Place of publication:
- London
This book offers an approach to planning respite care provision for disabled children and children with learning difficulties, based on the child's abilities and needs. The model set out in this book, the "Hello, this is me model" provides a method of assessing and planning care for children with a variety of special needs. Throughout the book an emphasis is placed on partnership between families and carers that enables children and their parents to make their wishes known when planning respite care so that the unique needs of each child can be met.
Understanding the parents of children with special needs: collaboration between health, social and education networks
- Authors:
- TETREAULT S., et al
- Journal article citation:
- Child: Care, Health and Development, 40(6), 2014, p.825–832.
- Publisher:
- Wiley
Context: In 2003, Quebec's Ministry of Health and Social Services (MSSS) and the Ministry of Education, Recreation and Sports (MELS) concluded the Agreement for the complementarity of services between the health and social services network and the education network. The objectives of the current investigation were to evaluate the implementation of this Agreement and its impact upon renewal of practices and services, and to investigate the consequences for children with special needs and their families. The specific focus of this article is to describe parents' perspectives regarding the impact of this Agreement upon them and their children. Methods: Interviews were conducted with 56 parents of children with disabilities, social maladjustment or learning difficulties across the province of Quebec. Data were analysed using content analysis. Results: Most parents were not directly aware of any contact between school staff and health or social professionals, although discussions might have been held without their knowledge. The intervention plans seemed to be the main vehicle through which some parents perceived collaboration to be occurring. For parents, the impact upon actual practices or collaborative work is either minimal or non-existent. Conclusion: School inclusion of children with special needs is a challenge for all societies. The Agreement illustrates the Quebec government's intent to promote an alliance between two complex networks and has the potential to greatly benefit children and their families. However, more concrete action is required in order to realise specific changes regarding work cohesion and service organisation for these groups. (Edited publisher abstract)
Transition: the experiences of young people with learning disabilities and their families in England
- Authors:
- WARD Linda, et al
- Journal article citation:
- Tizard Learning Disability Review, 8(4), October 2003, pp.19-28.
- Publisher:
- Emerald
Reports on a study of 283 families with youngsters with learning disabilities to examine the experiences of young people and their families in the transition from children's to adult services. The research was carried out by the Home Farm Trust and the Norah Fry Research Centre, University of Bristol, The research consisted of a postal questionnaire which was distributed to 370 families; 27 in-depth interviews which were conducted with parents in the family home; and 27 face-to-face interviews with the young people with learning difficulties from these families. The study found that existing legislation and guidance were largely failing youngsters with learning disabilities and their families at transition. There were substantial discrepancies between what ought to have been provided and what young people and their families experienced in practice, and significant difficulties as youngsters moved between children's and adult health and social services. Other difficulties experienced at transition are also reviewed, along with possibilities for improvements in practice. The study also looked at some innovative schemes and services in this area.
Development of integrated children's services in Exeter: a case study
- Authors:
- HOPGOOD Miles, SHAW John
- Journal article citation:
- MCC Building Knowledge for Integrated Care, 10(4), October 2002, pp.29-34.
- Publisher:
- Pavilion
Describes the experience of designing and implementing a joint health/social services/education strategy for children with special needs and their families in the Exeter, East Devon, Mid Devon and North Devon Primary Care Trust localities. While partnership with parents was a guiding principle and beneficial changes in policy and practice were introduced, the article gives practical illustrations of how easily a gap can emerge between rhetoric and reality during the implementation.
Planning for needs through the teenage years
- Author:
- -
- Journal article citation:
- Care Plan, 3(4), June 1997, pp.24-28.
- Publisher:
- Positive Publications/ Anglia Polytechnic University, Faculty of Health and Social Work
Looks at the transition to adult life for young people with learning disabilities or special educational needs and the importance of transition plans.