Search results for ‘Subject term:"learning disabilities"’ Sort:
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Having a son or daughter with an intellectual disability transition to adulthood: a parental perspective
- Authors:
- CODD Jon, HEWITT Olivia
- Journal article citation:
- British Journal of Learning Disabilities, 49(1), 2021, pp.39-51.
- Publisher:
- Wiley
Background: Transition to adulthood is an important time for young people and may be a particularly challenging time for people with intellectual disabilities. However, there has been little research in the UK regarding the experiences of parents who have son or daughter with an intellectual disability transitioning to adulthood. Method: The study used interpretive phenomenological analysis to explore the lived experiences of ten parents who had a son or daughter (aged 18–25 years) with an intellectual disability. Half of the sample also had a diagnosis of autism. Results: Three superordinate themes were generated from the data: (a) Transition: The Good, the Bad and Unknown; (b) Striving for Independence; and (c) Supporting the Supporters. Parents experienced many difficulties and uncertainty related to their role, their son/daughter's independence, navigating services for their son/daughter and accessing support for themselves. Conclusions: Increased collaboration and consistency from statutory services is required in addition to providing emotional support to parents and facilitating parent support networks. (Edited publisher abstract)
'We can't do it alone': perceived social support in parents of children with a significant cognitive and motor developmental delay
- Authors:
- VAN KEER Ines, VAN LEEUWEN Karla, MAES Bea
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 35(2), 2022, pp.531-536.
- Publisher:
- Wiley
Background: It is generally acknowledged that parent social support is an important target for intervention. To explore the specific needs of parents of young children with a significant cognitive and motor developmental delay (SDD), this study aimed to chart the sources and perceived sufficiency of the social support they receive. Method: Within the context of a broader project, 42 parents of a young child with SDD filled out a questionnaire on contextual factors, including information on social support. Results: The majority of parents reported to receive (more than) sufficient support. Insufficiency is primarily reported with regard to practical support. Apart from the partner, grandparents of the child were the most common source of support. Conclusions: This study confirms the importance of professional support and work-life balance within this specific target group. Specific attention for practical support needs seems warranted considering the high basic care needs of these children. (Edited publisher abstract)
Screening for parental intellectual disability: a first step in planning and delivering equitable support services?
- Authors:
- McCONNELL David, et al
- Journal article citation:
- Journal of Family Social Work, 24(4), 2021, pp.282-298.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
Parents with intellectual disability, like all parents, need support with childrearing. Early identification of parental intellectual disability may be key to the planning and delivery of appropriately adapted, inclusive family supports and services. The purpose of this study was to investigate the performance of a brief screener for parental intellectual disability. A total of 185 parents, including 91 parents in receipt of specialist intellectual disability services and 94 parents utilizing generic family support services, completed an interview/survey which incorporated candidate screening questions. The results of logistic regression and ROC curve analysis showed that a simple four-item screener performed well (accuracy 90.44%, sensitivity 92.31%, specificity 90.43%, AUC .96). The potential benefits of screening have to be weighed up against the risks of potential misuse. This study therefore suggests that screening be introduced in the context of continuing professional education and initiatives to build system’s capacity to support parents with intellectual disability and their families. (Edited publisher abstract)
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)
Supporting children of parents with intellectual disability: a scoping review
- Authors:
- GUDKOVA Tatiana, HEDLUND Marianne, MIDJO Turid
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 32(4), 2019, pp.737-749.
- Publisher:
- Wiley
Background: Parents with intellectual disability live normal lives and have children, but many of them lose custody of their children. However, little is known about the support, if any, that these children receive. Here, the present authors review the literature on the help and support given to children of parents with intellectual disability. Method: A scoping review of peer‐reviewed and grey literature was conducted, covering 1997 to November 2017. Results: Thirteen publications were identified. The children benefited from help and support received through informal networks. They also benefited from formal support if it focused on the children's needs and interests. Conclusions: The review shows that even though support from informal networks might be an influential factor in supporting children, there is a need for more research addressing the formal support these children receive and how they benefit from it. (Edited publisher abstract)
Supporting parents who have learning disabilities: strategic briefing
- Authors:
- TURNEY Danielle, TARLETON Beth, TILBURY Nadine
- Publishers:
- Research in Practice, Research in Practice for Adults
- Publication year:
- 2018
- Pagination:
- 32
- Place of publication:
- Dartington
An overview of the available evidence on 'what works' in working with parents who have a learning disability, including case study examples of good practice. The briefing aims to enable strategic leaders to: understand the practice tensions in this area, become familiar with the key research, and gain a greater understanding as to what will best support parents who have a learning disability. (Edited publisher abstract)
A model of well‐being for children with neurodevelopmental disorders: parental perceptions of functioning, services, and support
- Authors:
- RITZEMA A.M., et al
- Journal article citation:
- Child: Care, Health and Development, 44(2), 2018, pp.240-248.
- Publisher:
- Wiley
Background: Both child function and supports and services have been found to impact the well‐being of parents of children with neurodevelopmental disorders (NDD). The relationship between function and services and the well‐being of children with NDD is less well‐understood and is important to clarify in order to effect program and service change. Methods: The current project assessed whether child function as well as the adequacy of formal supports and services provided to children and their families were predictive of child well‐being. Well‐being was assessed using a measure of quality of life developed for use with children with NDD. Data from 234 parents were analysed using structural equation modelling. Results: Each predictor was found to load significantly on the overall outcome variable of well‐being. Parent concerns about child function were significantly related to child well‐being; parents who reported more concerns about their children's functioning reported lower levels of child well‐being. Unmet needs for formal supports and services were also significantly related to child well‐being; parents who reported that more of their children's and family's service needs were unmet reported lower child well‐being. An indirect relationship was also found between child function and child well‐being. When parents reported that their formal support needs were adequately met, their children's functional difficulties had a lower impact on parent perceptions of their children's overall well‐being. Conclusions: Taken together, the results of the current study enrich our understanding of well‐being for children with NDD. Discussion focuses on the service implications for children with NDD and their families. (Edited 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)
Support to parents with cognitive limitations: parental abilities and social participation
- Authors:
- MILOT Elise, TURCOTTE Daniel, TETREAULT Sylvie
- Journal article citation:
- British Journal of Learning Disabilities, 44(1), 2016, pp.71-77.
- Publisher:
- Wiley
In several countries, a growing number of adults with cognitive limitations decide to become parents. However, exercising this right requires the implementation of measures and services that foster their ability to assume parental responsibilities. This study presents results collected in an exploratory study documenting the type of support parents with cognitive limitations may need to play their parental role efficiently and be active members of their community. Data come from semi-structured interviews conducted with 27 professionals and 9 parents with cognitive limitations. Nine types of support were identified from the data collected. Some issues associated with the delivery of such supports are discussed. (Publisher abstract)
A few steps along the road? promoting support for parents with learning difficulties
- Author:
- TARLETON Beth
- Journal article citation:
- British Journal of Learning Disabilities, 43(2), 2015, pp.114-120.
- Publisher:
- Wiley
This paper considers the impact of research and development work around parenting by adults with a learning difficulty undertaken at the Norah Fry Research Centre (NFRC) since 2005. It discusses how their understanding of the support needs of parents with learning difficulties grew through an initial mapping study which led to the concept of ‘Parenting with Support’. It then discusses the development of the Working Together with Parents Network which has endeavoured to continue to draw together and promote positive support for parents with learning difficulties and how the subsequent research at NFRC has been undertaken with a desire to further understand and support the development of this positive practice. It describes how this work has supported professionals already aware of parents with learning difficulties’ support needs and but has yet to engage with the far wider range of professionals and agendas involved in supporting vulnerable families. (Edited publisher abstract)