Search results for ‘Subject term:"learning disabilities"’ Sort:
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Developing the pregnancy support pack for people who have a learning disability
- Authors:
- PORTER Eleanor, et al
- Journal article citation:
- British Journal of Learning Disabilities, 40(4), December 2012, pp.310-317.
- Publisher:
- Wiley
Today, an increasing number of people with learning disabilities have children. They are expected to fit into existing health services and are disadvantaged when presented with complex information regarding pregnancy and birth. However, there is a lack of information in relation to accessible information on antenatal care and consent to medical procedures, despite this being a recommendation by best practice guidelines on working with parents who have a learning disability. This project aims to redress this balance by developing accessible resources for a typical pregnancy. Thematic analysis is used to evaluate the accessibility and acceptability of the resources from a professional and service user perspective, and identified themes are discussed. Results suggest that adapted resources are helpful in supporting parents with learning disabilities to access essential information about their pregnancy and to make informed decisions about their care. They support the interaction between parents and maternity services, resulting in a more effective and efficient care process.
A special partnership: a practical guide for named persons and parents of children with special educational needs
- Authors:
- KERR Linda, SUTHERLAND Liz, WILSON Joyce
- Publisher:
- HMSO
- Publication year:
- 1994
- Pagination:
- 63p.,list of orgs.
- Place of publication:
- London
Looks at how parents can become actively involved in the assessment of their child's needs and describes in detail the Named Person as a source of support. Offers practical advice on how to choose a Named Person and what they can do to help.
Dundee family support team: side by side respite care scheme
- Authors:
- ANDERSON David, BEVERIDGE Colin
- Publisher:
- Barnardo's
- Publication year:
- 1989
- Pagination:
- 46p.,bibliog.
- Place of publication:
- Edinburgh
Report on a collaborative project between Tayside Health Board, Tayside Social Work Department, and Barnardo's, which offers support services to families with a child or young person with learning difficulties living at home. Concentrates on one aspect of the services offered - respite care. Describes the setting up and running of the scheme, and looks at recruitment, assessment, training and support for carers.
The double‐edged sword of vulnerability: explaining the persistent challenges for practitioners in supporting parents with intellectual disabilities
- Authors:
- MACINTYRE Gillian, STEWART Ailsa, McGREGOR Sharon
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 32(6), 2019, pp.1523-1534.
- Publisher:
- Wiley
Background: Evidence suggests that parents with intellectual disabilities can be “good enough” parents with appropriate support that focuses on the whole family. This paper brings together theories of vulnerability with an ethics of care approach to reflect on challenges for practitioners in supporting parents, drawing upon data from a study carried out in Scotland. Method: An online survey was administered to practitioners in three settings, and follow‐up interviews were carried out with key informants. Results: Pockets of good practice existed but a number of barriers to supporting families remained. These related to a lack of accessible information, difficulties in identifying and engaging with families at an early stage and poor joint working across agencies. Conclusion: The study concludes by arguing that practitioners' constructions of families as “vulnerable” reflects negatively on their perceived capacity to parent, creating further barriers in accessing appropriate support and reducing expectations of success. (Publisher abstract)
Parents with learning disabilities
- Authors:
- STEWART Ailsa, MCINTYRE Gillian
- Publisher:
- Institute for Research and Innovation in Social Services
- Publication year:
- 2017
- Pagination:
- 16
- Place of publication:
- Glasgow
This Insight brings together the key research findings on supporting parents with learning disabilities to help practitioners in considering approaches for working with this group of parents. It highlights the importance of early identification and of assessing levels parenting capacity of parents with learning disabilities. It also identifies different models of support, including: early intervention, pre-birth support, supported parenting programmes, provision of accessible information for parents with learning disabilities, and access to advocacy support. It highlights examples of good practice throughout. It concludes that there is a growing body of evidence to suggest that parents with learning disabilities can become good enough parents when the right support is in place. Although there has been good progress made in providing this support, it highlights the need for more work to ensure there is good access to support, that support is available on a longer-term basis, and that there is flexibility around key transition points in the life of the child and parents. (Edited publisher abstract)
Caring for a child with learning disabilities: over a prolonged period of time: an exploratory survey on the experiences and health of older parent carers living in Scotland
- Authors:
- CAIRNS Deborah, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 27(5), 2014, pp.471-480.
- Publisher:
- Wiley
To examine the impacts of a lifetime of caring on older parents of offspring with learning disabilities an exploratory postal survey was completed by 100 older parent carers. The survey including the Medical Outcome Study (Short Form) 36 version 2 (SF-36v2). The reported survey is part of a larger mixed method study including in-depth interviews. The majority of respondents (n = 91) reported caring for 50 h or more per week with multiple caregiving duties. While the SF-36v2 reported physical health of older parent carers to be similar to UK norms, their mental health was significantly reduced. The findings highlight the vulnerability of ageing parents of offspring with learning disabilities. This previously underreported situation warrants further investigation and urgent attention from health and social care agencies and professionals. (Edited publisher abstract)
A systematic review of interventions to promote social support and parenting skills in parents with an intellectual disability
- Authors:
- WILSON S., et al
- Journal article citation:
- Child: Care, Health and Development, 40(1), 2014, pp.7-19.
- Publisher:
- Wiley
The family support needs of parents with an intellectual disability (ID) are relatively unknown. This paper reviewed two types of intervention for parents with ID: those designed to strengthen social relationships and those teaching parenting skills. A literature search was conducted using electronic databases and a limited number of evaluative studies were found. The evidence for interventions aimed at strengthening social relationships was inconclusive; although positive changes were observed, there were limitations in study design which restricted the generalizability of the results. The evidence for parental skills teaching suggested that behavioural based interventions are more effective than less intensive forms such as lesson booklets and the provision of normal services, although these studies also had limitations. There is a need for further large scale controlled studies in this area to provide clearer evidence and to explore additional factors relating to child, parent and family which may impact on outcomes. (Publisher abstract)
'Always the guiding hand': parents' accounts of the long-term implications of developmental co-ordination disorder for their children and families
- Authors:
- STEPHENSON E.A., CHESSON R.A.
- Journal article citation:
- Child: Care, Health and Development, 34(3), May 2008, pp.335-343.
- Publisher:
- Wiley
The study reported here was part of an evaluation of an innovative screening clinic for the assessment of children with developmental co-ordination disorder DCD. Within the case study approach of the evaluation, questionnaires, including open-end questions, were sent to 70 families in Scotland. All had attended the screening clinic 6 years earlier and had little subsequent contact with the occupational therapy service. Semi-structured interviews were held with 12 mothers who volunteered to participate. These enabled specific issues raised in the questionnaires to be explored in greater depth. Interviews were audiotaped and full text transcripts produced for analysis. Over half the questionnaires were returned despite the length of time elapsed since hospital contact. Parents who responded reported a high persistence of problems in their children. Difficulties spanned motor and academic performance, emotional/behavioural responses and social interaction. Twenty-eight children (80%) of respondents were reported as having difficulties in three or more areas. Bullying was a commonly identified problem. At interview mothers spoke at length about their experiences and reported feeling stressed and distressed. Mothers reported a lack of support and expressed feelings of isolation. They said that their time investment in their child with DCD had pronounced effects on themselves and other family members. Specifically they highlighted time spent fighting the system, primarily for educational support. The study suggests a need for occupational therapists to reframe their current ideas regarding service provision, with improved support for families, increased interagency working and more service-user involvement.
For the record: the lived experience of parents with a learning disability – a pilot study examining the Scottish perspective
- Authors:
- MACINTYRE Gillian, STEWART Ailsa
- Journal article citation:
- British Journal of Learning Disabilities, 40(1), March 2012, pp.5-14.
- Publisher:
- Wiley
There are increasing numbers of parents with a learning disability living in the community. Research suggests that this group of parents faces disadvantage on multiple levels relating to poverty, social exclusion and discrimination. This small pilot study aimed to examine the lived experiences of 5 parents with a learning disability, to identify the needs of these parents, and to explore the potential role of advocacy in assisting these parents. The 5 parents had all been referred for advocacy support following the instigation of child protection proceedings. The study adopted a mixed methods approach including: a survey of relevant local organisations; interviews with the 5 parents; interviews with their 5 advocates; and interviews with 4 stakeholders. The findings showed that the parents faced a number of challenges not only in relation to their parenting role but also in the circumstances characterising their lives more generally. Parents were likely to be socially isolated and had limited support networks. Support services did not always meet the needs of parents with a learning disability, and joint working between agencies appeared to be particularly problematic. The study concludes that there is a clear role for advocacy in enabling these parents to have their voices heard.
Family life and the impact of previous and present residential and day care support for children with major cognitive and behavioural challenges: a dilemma for services and policy
- Authors:
- BROWN R.I., et al
- Journal article citation:
- Journal of Intellectual Disability Research, 55(9), September 2011, pp.904-917.
- Publisher:
- Wiley
Policy changes around inclusion and integration mean that many children with severe disabilities, including those with very challenging behaviour, now live in the community cared for by their parents. Families report experiencing stress and frustration with service and community support, and some have turned to residential and specialised day care services. This study examined experiences of these services in terms of the child and the impact on the family. It involved individual interviews (n=19) and focus groups (n=7) with parents in Aberdeen. The child sample included 23 children with an average of 12.7 years, all had multiple diagnoses of intellectual disability plus major challenging behaviour. The results demonstrate the difficulties facing families when the children spent most or all of their time at home. This contrasted starkly with the changes in perceived quality of family life once the children were in residential care and day support. Improvements in behaviour of the children were noted and children began to return home for periods of time. Parents reported increased stability of family life, involvement of siblings in more normal community life and increased opportunities for spouses to function more effectively in one or more life domains. The authors discuss questions of policy concerning family well-being, as well as the needs of the child.