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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.
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.
Changing day services: do you agree?
- Author:
- CAMPBELL Martin
- Journal article citation:
- Journal of Intellectual Disabilities, 16(3), September 2012, pp.205-215.
- Publisher:
- Sage
- Place of publication:
- London
Models of day services for people with intellectual disabilities in Scotland are changing. Buildings-based day services are being replaced increasingly with community-based provision in the form of alternative day opportunities. There has been some concern that a move to more flexible ‘alternative day opportunities’ is driven more by reduced budgets than a policy of modernising day services in response to individual needs. The aim of this study was to rate and collect views on existing day services in Fife, Scotland in order to inform the change process. A total of 60 questionnaires were completed by 36 carers, 18 service users, and 6 care staff. The questions were designed to evaluate day activities, care plans, opening times, transport and the most valued aspects of existing day services. The respondents indicated general satisfaction with existing day services, although half believed that day services should be reviewed. The most valued parts of day services were forming and building friendships, and a safe place to go. Any changes to these services should be responsive to needs and should achieve outcomes that are valued. The day service review process should be robust and transparent so that all views can be heard and the rationale for modernising day services should be clearly explained.
Self-advocacy: where now?
- Author:
- DAVIES Ian
- Journal article citation:
- Learning Disability Today, December 2012, pp.24-26.
- Publisher:
- Pavilion
- Place of publication:
- Hove
This paper details findings from a Central England People First (CEPF) project into the state of self-advocacy today. CEPF has always had the philosophy that members run the organisation and paid staff are there to help, not lead. The research consisted of visits to eight self-advocacy organisations in England and Scotland in 2012, and was primarily concerned with how a management team can be run to make sure the members with learning disabilities remain in charge while being able to get quality advice when necessary. The best organisations used a board of trustees to oversee the staff. Managing paid staff was a crucial issue for self-advocacy organisations; this was an area where members really needed good support, and help from outside the organisation was vital.
Zero tolerance; measured response: responding to violence in mental health or learning disability care settings
- Author:
- MENTAL WELFARE COMMISSION FOR SCOTLAND
- Publisher:
- Mental Welfare Commission for Scotland
- Publication year:
- 2012
- Pagination:
- 16p.
- Place of publication:
- Edinburgh
Although workplace violence is unacceptable, when it relates to mental ill-health within a care setting the issues are complex. Staff may be caught between providing appropriate and sensitive care for people whose mental disorder results in violence, and reporting significant incidents to the police in order to protect the person, other service users and themselves. This guidance looks at best practice in responding to incidents of violence in learning disability and mental health settings. It reflects the findings of a national consultation with a wide range of stakeholders using a number of anonymised case examples. The guidance questions the traditional idea of ‘zero tolerance’ and aims towards developing a more measured response. The 2 essential outcomes from all incidents of violence in mental health and learning disability care settings are: ensuring the safety of all persons; and ensuring that the needs of the person for care and treatment (and the needs of any others affected by the incident, including staff) continue to be met in a safe and appropriate care setting. A number of recommendations are provided on the development of policies in response to violent incidents. [An updated version titled 'Responding to violence in a mental health or learning disability care setting' was published in 2017].
Working age claimants with complex needs: qualitative study
- Author:
- DONALDSON Dan
- Publisher:
- Great Britain. Department for Work and Pensions
- Publication year:
- 2012
- Pagination:
- 22p.
- Place of publication:
- London
This small-scale qualitative study of frontline Jobcentre Plus staff was commissioned to supplement the existing evidence base that the Department for Work and Pensions (DWP) holds about working age claimants with complex needs. The study explored: how complex needs are defined by Jobcentre Plus staff, which claimants Jobcentre Plus staff consider to have complex needs and why, and areas for improvement to the service identified by staff. The fieldwork comprised six focus groups of Jobcentre Plus staff, conducted during July and August 2011. They took place in six areas across the Country (Greater Manchester; East London; Durham and Tees Valley; Glasgow, Lanarkshire and East Dunbartonshire; Thames Valley; and West Yorkshire). Findings from the research will be used to inform ongoing efforts to improve service delivery for working age claimants with complex needs by DWP Operations. The research will also add to the wider evidence base for working age claimants with complex needs to inform the implementation of Welfare Reform policies and future policy developments.
Effect of music on mealtime disruptions
- Authors:
- HOOPER Jeff, CARSON Derek, LINDSAY Bill
- Journal article citation:
- Nursing Times, 27.11.12, 2012, pp.22-24.
- Publisher:
- Nursing Times
People with learning disabilities may display anxiety-driven behaviours that disrupt mealtimes. This study examined how delivering calming background music through headphones affected anxiety-driven behaviours that disrupted mealtimes of people with learning disabilities. A convenience sample of 30 adults with mild, moderate or severe learning disabilities was videotaped during mealtimes on two consecutive days. On the first day, half the group age without any calming music, while the other half sat opposite wearing earphones. On the second day, the non-music and music groups were swapped around. The final sample size was 24, as some would not tolerate the headphones. Of these 24 only three showed disruptive behaviour. There were signs that calming music has a positive effect on disruptive mealtime behaviours, though the sample was too small to conduct meaningful analysis.
The impact of staff training on the knowledge of support staff in relation to bereavement and people with an intellectual disability
- Authors:
- WATTERS Laura, MCKENZIE Karen, WRIGHT Rachel
- Journal article citation:
- British Journal of Learning Disabilities, 40(3), September 2012, pp.194-200.
- Publisher:
- Wiley
Despite a growing understanding of bereavement and mourning in the general population, the needs of individuals with a learning disability who are bereaved have often been neglected and misunderstood. The aim of this study was to investigate the impact of a 1-day training course on the knowledge of care staff about supporting an individual with a learning disability who has experienced bereavement. The training included content on bereavement and grief, responses to bereavement in individuals with learning disability, and how to support an individual with learning disability after bereavement. The study utilised a questionnaire based, mixed design. Forty-eight participants were randomly assigned to 1 of 2 equal groups. The 2 groups were trained at different times, allowed group 2 to act both as a control group and later to receive training. Within- and between-group comparisons were made. The training was shown to have significantly improved care staff knowledge in all the areas measured. An analysis of staff knowledge at 1 month after training was not possible due to a low response rate.
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.
Finding the words to work together: developing a research design to explore risk and adult protection in co-produced research
- Authors:
- BROOKES Ian, et al
- Journal article citation:
- British Journal of Learning Disabilities, 40(2), June 2012, pp.143-151.
- Publisher:
- Wiley
Co-produced research with people who access support services is increasingly common. However, details on how people who access support services can take more of an assertive role in developing research design are understudied. This article reflects on the development of a research project on adult protection practice in Scotland. It starts by giving an overview of what the policy on adult protection is in Scotland, how the research was carried out, and what people who may be affected told what they wanted. By doing a literature review together, the group have gained a better understanding of how words are used as tools. The article concludes that those who design, carry out, and research services should consider using a wider range of tools than just words to help people have a say in how research to help people with learning disabilities is done.