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Food for thought: people with learning disabilities and family carers share their experiences of healthy eating
- Authors:
- SCOTTISH CONSORTIUM FOR LEARNING DISABILITY, (Producer)
- Publisher:
- Scottish Consortium for Learning Disability
- Publication year:
- 2011
- Pagination:
- DVD, booklet
- Place of publication:
- Glasgow
In this DVD people with learning disabilities and their family carers tell their story of healthy eating. Their stories show how some people and families have overcome barriers to healthy eating. As well as healthy eating, the DVD also covers enjoying cooking and eating, having choice and control about what you eat, where you eat and who you eat with. It shows that healthy eating works best when everyone works together.
The quantitative measurement of family quality of life: a review of available instruments
- Authors:
- HU X., et al
- Journal article citation:
- Journal of Intellectual Disability Research, 55(12), December 2011, pp.1098-1114.
- Publisher:
- Wiley
Family quality of life (FQOL) is a central outcome of service delivery for disabled people and their families. This review investigated the difference in approaches between families with children with learning disabilities and other families and identified recommendations to improve the measurements of FQOL in the disability field. A search of 25 databases was conducted, and 16 measurement tools on FQOL, family well-being and family satisfaction used in the disability field, healthcare field and general family studies published in journals from 1980 to 2009 were included. Three themes emerged: description of the primary purpose and theoretical basis; identification of the tool's respondents, domains, response formats and scoring strategies to assess family systems; and summarisation of available psychometric information. The authors concluded that as family researchers continue to conceptualise and theorise about FQOL, they should also promote the refinement of FQOL measurements and consider the implications from instruments used in the family fields from the following aspects: domains of FQOL; units of analysis; response format; scoring choice; and psychometric evaluation. Implications for future research are discussed.
A positive couple therapy model: improving relationships for people with intellectual disabilities
- Author:
- MUNRO J. Dale
- Journal article citation:
- Advances in Mental Health and Intellectual Disabilities, 5(5), 2011, pp.34-39.
- Publisher:
- Emerald
The author describes a model of couple intervention specifically developed for helping people with intellectual disabilities who are experiencing relationship problems. The Positive Support – Couple Therapy model recommends assessing and working not only with the couple, but also with extended family and the service system. An agency staff member, familiar with the couple, is often asked to act as co-therapist. Private couple therapy sessions have proven extremely valuable, along with specific strategies that focus on management of issues such as anger and jealousy, sexuality issues, ways partners can complement and compensate for each other's weaknesses, healthy boundary-setting, having fun, and utilising psychiatric consultation if necessary.
Valuing People: family matters ten years on
- Authors:
- COOPER Viv, WARD Cally
- Journal article citation:
- Tizard Learning Disability Review, 16(2), April 2011, pp.44-48.
- Publisher:
- Emerald
It is ten years since Valuing People promised a ‘new deal’ for family carers. Valuing People was explicitly concerned to ensure a cultural shift in the way services worked with and conceptualised the role of family carers. It included specific objectives for involving families in local partnership boards, providing better support for them in their caring role and investing in family leadership nationally, regionally and locally. This article considers why there was a need for a more family-focused approach to support. It then discusses the advances over the last decade towards meeting the objectives of Valuing People. It concludes that despite the positive policy developments it would be dangerous to be complacent; there is still a need to continue investing in families and people with learning disabilities to ensure that the gains of the past decade are not lost.
A family perspective of the value of a diagnosis for intellectual disability: experiences from a genetic research study
- Authors:
- STATHAM Helen, et al
- Journal article citation:
- British Journal of Learning Disabilities, 39(1), March 2011, pp.46-56.
- Publisher:
- Wiley
This paper centres on families where more than one male in a family has a learning disability, and examines possible genetic links. Currently, most professionals working in the field of intellectual disability are unconcerned with why someone has the impairment. Genetic aspects may be viewed as, at best irrelevant, but more often, potentially negative. However, where the intellectual disability may be inherited, there are implications for family members and the individual. The paper presents findings from a study of the experiences of families with many boys or men with intellectual disability who were participating in genetic research aimed at finding new causes of intellectual disability. One hundred and twenty members of 37 families were interviewed, and a framework analysis was employed to investigate the data. Overall, the family members were positive about participating in the genetic research, wanting an explanation for what was going on in their family and enabling other family members to have choices about reproduction. However, the authors concluded that the genetic research was unlikely to benefit individuals with learning disabilities.
Personalisation - making it happen: the social worker's perspective
- Author:
- SOCIAL CARE INSTITUTE FOR EXCELLENCE
- Publisher:
- Social Care Institute for Excellence
- Publication year:
- 2011
- Place of publication:
- London
This film looks at the work of a personal budget team in Hull. It shows how the team works with people who use services to provide personalised care, focusing on one family where a mother is having difficulty coping with one of her adult sons who has learning disabilities. The opportunity to spend time at a garden centre transforms the life of her son, but also gives his mother a much-needed break. Without personalisation, this solution would not have been possible and the family would have been reliant on traditional services. Social workers from the team talk about their new ways of working and about the benefits it brings to both them and the people who use their services.
Challenging behavior training for teaching staff and family carers of children with intellectual disabilities: a preliminary evaluation
- Authors:
- GORE Nick, UMIZAWA Hiromi
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 8(4), December 2011, pp.266-275.
- Publisher:
- Wiley
While training programmes on challenging behaviours have often been offered to teaching staff and family carers of children with intellectual disabilities (ID), they have rarely been offered to both at the same time. This study evaluated a brief training programme delivered to both teaching staff and family carers, and examined the differences in outcomes between the two groups. Participants included 49 family carers and 33 teaching staff recruited from five schools for children with severe to moderate intellectual disabilities in the southeast of England. The training was divided into two segments. The content was the same, but in the first segment, one was held for teaching staff and one for parent carers. In the second segment, both groups met together. After the first segment, all participants completed a related homework task before joining each other for the second segment. Significant positive changes were found regarding ratings of challenging behaviour, participants' causal attributions, and emotional reactions following the training. Some differences were found regarding outcomes for teaching staff vs. family carers. The authors concluded that teaching staff and family carers could benefit from receiving combined training to support challenging behaviour.
Early intervention services in Turkey: perspectives of south-eastern families
- Authors:
- BAYHAN Pinar, SIPAL R. Firat
- Journal article citation:
- International Social Work, 54(6), November 2011, pp.781-799.
- Publisher:
- Sage
Early intervention programmes can provide dramatic shifts in the competencies of children with special needs. In 2005, Turkey passed the Public Law for Individuals with Disabilities. In this law, the importance of early intervention is highlighted, which should be facilitated by a professional team to inform the families about the options and services available to them. These early intervention teams, comprising members of different professional domains, were set up in hospitals in order to serve families with respect to the new legislation. The purpose of this study was to explore families’ perceptions of the service delivery of early intervention support provided under this new legislation. In south-east Turkey, a total of 150 parents of children with cognitive disabilities were interviewed about their perception of service, including the information, guidance, and psychological support they were receiving. The findings demonstrate that the provision of services in the region varied greatly from one professional team task to the next. The team members often had difficulties in sharing responsibilities, as well as completing mandated tasks. Implications for the improvement of service delivery are discussed.
A comparison of activity levels among adults with intellectual disabilities living in family homes and out-of-family placements
- Authors:
- FELCE David, PERRY Jonathan, KERR Michael
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 24(5), September 2011, pp.421-426.
- Publisher:
- Wiley
Despite the fact that the majority of adults with intellectual disabilities live in the family home, little research has been done on their quality of life. This paper aims to compare the activities of adults with intellectual disabilities living in family homes with those in out-of-family placements. It examines 2 aspects of the quality of life: the range and frequency of social and community activities; and the extent of participation in family activity at home. The study involved secondary analysis of a dataset produced by merging data from 4 earlier studies. The merged dataset contained information on 30 adult participants living independently, 142 living in family homes, and 559 in staffed homes. Participant characteristics and household and community activity indicators were compared across places of residence. For those living in family or staffed homes, the association between the activity indicators and place of residence after controlling for participant characteristics was examined. The findings showed that the place of residence was a significant factor after controlling for participant differences. People living independently had higher household participation. People living in staffed housing had higher household participation and did more community activities more frequently than people living in family homes. The findings suggest that adults living in family homes may have fewer activity opportunities than those living in supported accommodation.
People with intellectual disabilities in out-of-area specialist hospitals: what do families think?
- Authors:
- BONELL Simon, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 24(5), September 2011, pp.389-397.
- Publisher:
- Wiley
Guidance on commissioning specialist learning disability services addresses the importance of listening to family carers’ views about services and attempting to keep people close to their home and community. Despite this, out-of-area hospital care persists, with its attendant problems such as reduced family visits and difficulties in community rehabilitation. The aim of this study was to examine the views of family members of people with intellectual disabilities who are being cared for in out-of-area psychiatric hospitals, in particular focusing on whether culturally appropriate services were being provided. A total of 16 family members of patients receiving care in an out-of-area hospital were interviewed about their views on the care their relative or partner was receiving. Transcripts were then analysed by the study team and themes identified. The families expressed a wide range of views regarding out-of-area hospital care. Important themes identified were: feelings of shame; concerns about safety; cultural needs not being met; lack of improvement; and lack of involvement in care. These views on negative aspects of care should guide areas for quality improvement initiatives for inpatient services.