Search results for ‘Subject term:"learning disabilities"’ Sort:
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Supporting carers during assessment and treatment unit admissions
- Author:
- JAMES Neil
- Journal article citation:
- Advances in Mental Health and Intellectual Disabilities, 10(2), 2016, pp.116-127.
- Publisher:
- Emerald
Purpose: This paper reports the findings from the second stage of a study that explored the experiences of family carers whose relative was admitted to a specialist National Health Service assessment and treatment unit (ATU) in Wales, UK (James, 2016). It aimed to obtain the views of professionals in relation to what they consider are the barriers and facilitators to addressing some of the experiences discussed by carers. Design/methodology/approach: Nine professionals working in intellectual disability-specific services participated in four semi-structured interviews and one focus group (n=5) and the data were analysed using a descriptive thematic analysis process. Findings: Three major themes were developed to represent what professionals identified as a number of individual, organisational and practical facilitators and barriers to the provision of support to carers at this time. Professionals recognised the important role they have in developing relationships with carers during the admission. Key to this relationship is effective communication, collaboration, involvement and the need to be consistently open and honest. Research limitations/implications: The small sample size could be said to be a weakness and unrepresentative and practice of other professionals. However, what professionals reported had similarities to the findings from other related research. Importantly, the findings have a practical significance in that they can be used to raise awareness and be used to inform the development of future research and practice. The sample could also be criticised for not having representation from a wider range of professionals from across the multi-disciplinary team. However, a strength of the sample is that it did have representation from three different professional disciplines with different roles and responsibilities. Social implications: The findings from this study illustrate a gap between the rhetoric of policy, legislation and carer strategies, and practice of valuing and respecting the role that carers. Of particular concern is that some of the relationships that carers have had with professionals have threatened rather than positively endorsed and augmented their role and identity. These engagements with professionals therefore have had a profound effect on the way in which they have understood their value as a carer and their own sense of self. Significantly, the actions and behaviours of professionals play a key role in shaping carers views of themselves and their identity.the wider literature exploring the family carer experience. (Edited publisher abstract)
What influences women with intellectual disabilities to attend breast screening? Experiences of women who have and have not participated
- Author:
- WILLIS Diane S.
- Journal article citation:
- British Journal of Learning Disabilities, 44 (4), 2016, pp.269-276.
- Publisher:
- Wiley
Background: Despite breast screening in Britain being free to all women within the allotted age range, uptake of this service is often poor in women with intellectual disabilities. Reasons put forward are numerous, including poor knowledge, pain and difficulty travelling to the centre. However, what influences the decision to attend is rarely discussed. Methods: Twelve semi-structured interviews and three focused observation were undertaken with women with intellectual disabilities to explore what influenced them to participate in breast screening and their experience of having mammography. Data were analysed thematically using a blended framework. Results: Despite the experience of mammography being negative, high uptake of breast screening services was reported in this study. Pain and previous poor treatment in hospital were reasons for nonparticipation in breast screening. Although awareness about breast screening varied, those who had previous breast problems were more knowledgeable; however, there was poor awareness of the risks of hereditary breast cancer. Overall, paid-carers were found to play a key role, as means of support, information and a potential influence in determining participation in breast screening. Conclusions: There was general equality of access but an inequality in the preparation and delivery of the service which was dependent on a complex range of issues and relationships. Key to participation was preparation with the paid-carer facilitating discussions about breast screening were key to participating in mammography. This has implications on the future direction of funding and policy making. Risks associated with hereditary breast cancer and earlier presentation of breast tumours also needs highlighting. (Edited publisher abstract)
The family caregiving context among adults with disabilities: a review of the research on developmental disabilities, serious mental illness, and traumatic brain injury
- Authors:
- BARRIO Concepcion, HERNANDEZ Mercedes, GAONA Lizeth
- Journal article citation:
- Journal of Family Social Work, 19(4), 2016, pp.328-347.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
A majority of adults with serious disabilities are cared for in the home by family members. Guided by an ecological framework, this article presents the findings of a literature review of research on family caregiving and family support for adults with disabilities. This review included 33 research studies published between 2000 and 2015 focused on three disabilities: developmental disabilities, serious mental illnesses, and traumatic brain injury. A synthesis of the findings underscores the critical role that family caregivers occupy in addressing the needs of their loved one with a disability; however, the needs of the caregiver are insufficiently met by existing service approaches. A better understanding of the unique needs and strengths of the family support context of caregivers and care recipients is needed, giving greater attention to ethnic, racial, and cultural considerations in future research. (Publisher abstract)
Perceived barriers and facilitators to positive therapeutic change for people with intellectual disabilities: client, carer and clinical psychologist perspectives
- Authors:
- RAMSDEN Sarah, et al
- Journal article citation:
- Journal of Intellectual Disabilities, 20(3), 2016, pp.241-262.
- Publisher:
- Sage
- Place of publication:
- London
Studies have highlighted successful outcomes of psychological therapies for people with intellectual disabilities. However, processes underlying these outcomes are uncertain. Thematic analysis was used to explore the perceptions of three clinical psychologists, six clients and six carers of barriers and facilitators to therapeutic change for people with intellectual disabilities. Six themes were identified relating to: what the client brings as an individual and with regard to their wider system; therapy factors, including the therapeutic relationship and adaptations; psychologists acting as a ‘mental health GP’ to coordinate care; systemic dependency; and the concept of the revolving door in intellectual disability services. The influence of barriers and facilitators to change is complex, with facilitators overcoming barriers and yet simultaneously creating more barriers. Given their potential impact on the psychologists’ roles and access to therapy for people with intellectual disabilities, findings suggest these factors should be formulated as part of the therapeutic process. (Publisher abstract)
Evaluation of the Older Carers Project delivered by Every-One (formally known as Lincolnshire Carers and Young Carers Partnership, LCYCP)
- Authors:
- DEVILLE Jane, DAVIES Helen, KANE Ros
- Publisher:
- University of Lincoln
- Publication year:
- 2016
- Pagination:
- 48
- Place of publication:
- Lincoln
An evaluation of project providing support for carers over the age of 55 with grown up children with learning disabilities to help them produce contingency and future care plans. The project aimed to ensure older carers were known to Lincolnshire County Councils and also that when the carers could no longer continue in their caring role, sufficient plans were in place to avoid a crisis where their son or daughter may be forced into residential care. The project was funded by Lincolnshire County Council, through the Better Care Fund, and delivered by Lincolnshire Carers and Young Carers Partnership. The evaluation interviewed 12 carers about the support they had received from the Project, the future planning they had undertaken and any benefits of the intervention. The evaluation found the Older Carers Project had been a successful in helping carers set up emergency and future plans. Participants highly valued the support they had received from project support workers, talked positively about the flexibility of the support, the role and knowledge of the project support workers and the delivery of the project by a third sector organisation. Participants also valued having a service aimed at themselves rather than their sons or daughters. In some cases the project had highlighted benefits, services and support that the carers did not know they were entitled to. Overall the preparation of plans enabled carers to feel more positive about the future for themselves and the future care their son or daughter may receive. (Edited publisher abstract)
Stopping over-medication of people with a learning disability, autism or both (STOMP): a family carer perspective
- Author:
- CHALLENGING BEHAVIOUR FOUNDATION
- Publisher:
- Challenging Behaviour Foundation
- Publication year:
- 2016
- Pagination:
- 22
- Place of publication:
- Chatham
Reports on the results of a consultation of over 100 family carers on their experience of the prescription of medication for a relative with learning disability or autism for challenging behaviour. The consultation also aimed to identify what information and support family carers currently have access to when medication is suggested or prescribed for their relative. Issues discussed include: prescribing rationale, decision making process, impact of medication, and alternatives to medication. The research found that many family carers welcomed national work to stop the over medication of people with learning disabilities and autism, but expressed frustration at how long change is taking. Many family carers were anxious that their loved ones had been medicated inappropriately and had a range of debilitating side-effects. There was also evidence of a lack of information and advice for family carers regarding medication decisions. The report makes recommendations to reduce the use of antipsychotic and antidepressant medication, some of which are to be taken forward by the Stopping the Over Medication of People with a Learning Disability, Autism or Both (STOMP) NHS campaign to consider. (Edited publisher abstract)
Voting and the Scottish referendum: perspectives of people with intellectual disabilities and their family and paid carers
- Authors:
- WILLIS Diane S., et al
- Journal article citation:
- Disability and Society, 31(7), 2016, pp.914-928.
- Publisher:
- Taylor and Francis
Voting is a human right for every citizen yet many people with intellectual disabilities do not vote or have little support to exercise their right to vote. This article explores views on the wider aspects of voting against the backdrop of the Scottish referendum using focus groups involving people with intellectual disabilities (n = 12), family carers (n = 7) and paid carers (n = 5). Findings revealed that people with intellectual disabilities had similar concerns to the general population about the referendum. Regarding voting, all groups identified the need to discuss issues and for practical support and accessible information to ensure informed choices were made when voting. (Publisher abstract)
Informal support and burden among parents of adults with intellectual and/or developmental disabilities
- Authors:
- ROBINSON Suzanne, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 29(4), 2016, p.356–365.
- Publisher:
- Wiley
Background: Parents often play a lifelong role in supporting their sons and daughters with intellectual and/or developmental disabilities (IDD). There is a need to better understand parent resources, particularly when the individual with IDD has behaviour problems, as the latter has consistently been linked to parental burden. Methods: The current study aimed to investigate the relationship between the behaviour support needs of 212 adults with IDD and parental burden, and whether perceived helpfulness of informal supports moderated this relationship. The helpfulness of individual sources of informal support was also explored. Results: Informal support was negatively related to burden, although it did not act as a moderator. Individual sources varied in terms of how they were related to burden, but none acted as moderators. Conclusions: Although informal social support appears to be important to parents and may help alleviate burden, it does not appear to act as a moderator as anticipated. (Publisher abstract)
Paving the way: early intervention for children with learning disabilities whose behaviours challenge
- Authors:
- CHALLENGING BEHAVIOUR FOUNDATION, COUNCIL FOR DISABLED CHILDREN
- Publishers:
- Challenging Behaviour Foundation, Council for Disabled Children
- Publication year:
- 2016
- Place of publication:
- London
Website containing a range of resources to provide families, professionals, staff, and commissioners with information about how to reduce challenging behaviour and to improve the wellbeing of children with learning disabilities. It brings together a range of resources, including: evidence of what works, what families have found helpful, videos, case studies and examples of good practice. Topics covered include: transition to adulthood, positive behaviour support; education, health and care; communication, providing support and service development. The website has been developed as part of the 'Paving the way', a joint project from the Challenging Behaviour Foundation and the Council for Disabled Children which worked in partnership with families and professionals to share and promote good practice and improve outcomes for children with challenging behaviour. (Edited publisher abstract)
National inspection of care and support for people with learning disabilities: overview
- Authors:
- CARE AND SOCIAL SERVICES INSPECTORATE WALES, HEALTHCARE INSPECTORATE WALES
- Publishers:
- Care and Social Services Inspectorate Wales, Healthcare Inspectorate Wales
- Publication year:
- 2016
- Pagination:
- 51
- Place of publication:
- Cardiff
Sets out the findings of the national inspection of quality and safety of care and support for adults with learning disabilities. The inspection includes fieldwork in six local authorities and corresponding health boards; the results of a thematic enquiry into services for people with learning disabilities regulated by CSSIW; and the results of a national data and self-assessment survey undertaken in all 22 local authorities in Wales. Inspectors focused on a number areas including: support for carers; whether local authorities provide information, advice and assistance; and whether or not local authorities have good leadership and governance arrangements. Inspectors from Healthcare Inspectorate Wales (HIW) also looked at the efficacy of the partnership between social services and health. Findings of the report looks at what is working well and areas for improvement under the following themes: understanding need, providing effective care and support, and leading in partnership. The report found that the quality of care and support for many people with learning disabilities depended on the effectiveness of the front line social services and health staff and the assertiveness of relatives. The report makes a number of recommendations, including: that local authorities review their quality assurance arrangements for care and support planning with individuals; for local authorities and health boards to share best practice; and for local authorities and health boards to ensure that the lines of accountability and responsibility in relation to adult safeguarding are clear and understood by staff. (Edited publisher abstract)