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Examining the support needs of ageing family carers in developing future plans for a relative with an intellectual disability
- Authors:
- TAGGART Laurence, et al
- Journal article citation:
- Journal of Intellectual Disabilities, 16(3), September 2012, pp.217-234.
- Publisher:
- Sage
- Place of publication:
- London
Due to the increased life expectancy of people with intellectual disability, they are now more likely to be living with an ageing family carer. The aim of this study was to examine the support needs of ageing family carers in developing future plans for a relative with an intellectual disability. A mixed methods design was employed. In stage 1, a structured questionnaire was used to collate information on the health, caregiving demands and future planning preferences of 112 parent and sibling carers aged 60–94 years. In stage 2, 19 in-depth semi-structured interviews were undertaken with a sample of carers to explore a range of issues around future planning. Over half of the carers were lone carers, mainly female, with many reporting a wide range of health problems. The main preference was for the person to remain in the family home, with either the family or paid staff to support them. A minority of parent carers preferred the person to move into the home of a sibling, although some favoured the person moving to a residential facility with other people with intellectual disabilities. Four main themes were identified around future planning: unremitting apprehension; the extent of planning; obstacles encountered; and solutions for future planning. Avoidance, lack of guidance and a lack of appropriate residential provision were cited as obstacles to making future plans compounded by the emotional upset experienced by carers in thinking about the future.
Being a witness: helping people with learning disabilities who go to court: a guide for carers
- Author:
- ENABLE Scotland
- Publisher:
- Scotland. Scottish Executive
- Publication year:
- 2006
- Pagination:
- 32p.
- Place of publication:
- Edinburgh
This booklet is aimed at carers and covers how to help adults with learning disabilities who have been asked to be a witness in a criminal court case or at a children’s hearing court case. An adult witness is someone aged 16 or over. It contains information that informal carers, care workers and advocacy or other staff may find useful before, during and after the court case. The court process and the people present are explained, and what a carer can do in advance, on the day and afterwards is outlined.
Developing local area co-ordination in Scotland: supporting individuals and families in their own communities
- Author:
- CURTICE Lisa
- Journal article citation:
- Tizard Learning Disability Review, 8(1), January 2003, pp.38-44.
- Publisher:
- Emerald
Following its development and evaluation in Western Australia, local area co-ordination (LAC) has been included as an integral part of the strategy for people with learning disabilities in Scotland. Local Area Coordinators (LACs) work directly with individuals and families to help them find the information and local supports they need. This article looks at the background to the adoption of Local Area Coordinators in Scotland.
Effective communication training interventions for paid carers supporting adults with learning disabilities
- Authors:
- KYLE Seonaid, MELVILLE Craig A., JONES Andrea
- Journal article citation:
- British Journal of Learning Disabilities, 38(3), September 2010, pp.210-216.
- Publisher:
- Wiley
Carer communication skills contribute to the well being of individuals with learning disabilities. In order to meet the health needs of adults with learning disabilities, the provision of communication skills training for carers and professionals is important. This study developed and investigated the psychometric properties of a communication self-efficacy measure, the Glasgow-Communication Efficacy Scale (G-CES), for use with carers and professionals attending communication training interventions relevant to working with individuals with learning disabilities. The research team developed the G-CES based on their experience of delivering communication training, and working with adults with learning disabilities in clinical settings. The G-CES is designed as a self-report measure which measures self-efficacy across key areas of communication. A pre-post intervention study design was used to examine the reliability and sensitivity to change of the G-CES. Twenty-six paid carers who support adults with learning disabilities completed the G-CES before and after participating in a communication training intervention. The results showed that the scale had good internal and test-retest reliability. Carer communication efficacy increased after taking part in the training. Use of the G-CES in clinical services and research studies can help to develop the evidence base on the effectiveness of communication training interventions relevant to working with persons with learning disabilities.
FAIs: issues for families and carers
- Author:
- SMITH Nicola
- Journal article citation:
- SCOLAG Journal, 379, May 2009, pp.120-121.
- Publisher:
- ScoLAG(Scottish Legal Action Group)
This article examines some of the areas covered by a review of the Fatal Accident Inquiry System in Scotland. The review followed the death of Roderick Donnett, a man with Down's syndrome who died whilst living in a care home. The article focuses specifically on key issue for families and carers as well as people with learning disabilities.
Council tax in Scotland: a guide for people who have special needs and their carers
- Author:
- SCOTLAND. Scottish Executive
- Publisher:
- Scotland. Scottish Executive
- Publication year:
- 2000
- Place of publication:
- Edinburgh
Inconsistencies in the roles of family- and paid- carers in monitoring health issues in people with learning disabilities: some implications for the integration of health and social care
- Author:
- WILLIS Diane S.
- Journal article citation:
- British Journal of Learning Disabilities, 43(1), 2015, pp.24-31.
- Publisher:
- Wiley
Changes in the living circumstances of people with learning disabilities have seen responsibility for their health become the provenance of paid-and family-carers. As part of a larger study exploring breast cancer screening in women with learning disabilities, thirteen semi-structured interviews were conducted with three family-carers and ten paid-carers. Interview topics covered demographics, keeping healthy, the experience of breast screening and decision-making. Findings revealed that the role of these carers was undefined, leading to difficulty in deciphering who was responsible for the health care of the people they supported, with some paid-carers claiming that health was out of their remit. The difficulty of monitoring health problems of people with learning disabilities was noted, and carers disclosed skills and techniques that they used to explain health messages to individuals. If the health needs of people with learning disabilities are to be met, then a more consistent approach to health care within the community setting is needed, especially in terms of the remit of paid-and family-carers and with the integration of health and social services. (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)
Utilising behavioural family therapy (BFT) to help support the system around a person with intellectual disability and complex mental health needs: a case study
- Authors:
- MARSHALL Keith, FERRIS Jan
- Journal article citation:
- Journal of Intellectual Disabilities, 16(2), June 2012, pp.109-118.
- Publisher:
- Sage
- Place of publication:
- London
Family members and staff who provide support to people with intellectual disabilities with mental health difficulties are more likely to experience increased stress. Previous research has demonstrated that psycho-educational family interventions have a positive impact on the person with mental health difficulties and on the family members who support them. This article uses a case study to illustrate the implementation of a family intervention with the support system around ‘George’, a 45 year old man with mild intellectual disabilities and diagnoses of schizophrenia and autism. Following behavioural family therapy, which encourages service users to take the lead in discussions about how their illness affects them and their family, the family members reported a decrease in levels of strain. Both the family and team members reported improvement in functioning within the support system. The authors concluded that the family based intervention was a cost-effective way of building resilience and reducing stress.
Working out of the box: an evaluation of short breaks and intensive support services to families and disabled young people whose behaviour is severely challenging: summary report
- Author:
- McCONKEY Roy
- Publisher:
- Action for Children
- Publication year:
- 2011
- Pagination:
- 46p.
- Place of publication:
- London
This summary report brings together the main findings from an evaluation of three Action for Children services in Cardiff, Glasgow and Edinburgh. These services provide specialist short breaks and intensive support services to families and learning disabled young people with severely challenging behaviours. The report provides a literature review and a detailed analysis of the model of service that has evolved at the three locations. An overview of staff employed by the services shows that most have some form of higher qualification and access to regular training. Families using the service tend to be from poor backgrounds, with many being lone parent families, and many living in rented accommodation and dependent on benefits. More boys than girls accessed the services. Most were teenagers and most attended special schools, with many also being diagnosed with autism. About a quarter were dependent on others for feeding, dressing and toileting. Key workers rated the changes in children and families over the preceding six months and reported that a sizeable proportion had shown some improvements in communication and personal care. Interviews with stakeholders involved with a sample of children revealed a very positive evaluation of the services. The children benefitted from participating in a range of activities, but their social inclusion remains limited. The report concludes with recommendations on the future developments of these services.