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Whose quality of life? a comparison of measures of self-determination and emotional wellbeing in research with older adults with and without intellectual disability
- Authors:
- SEXTON Eithne, et al
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 41(4), 2016, pp.324-337.
- Publisher:
- Taylor and Francis
Background: Measures of quality of life (QOL) must be appropriate for specific groups but comparable across groups. In this paper, the authors compared how QOL is measured in research with older adults with and without an intellectual disability (ID). Methods: Measures used in 2 population studies of older adults with and without ID (Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing [IDS-TILDA], and The Irish Longitudinal Study on Ageing [TILDA]) were examined. Framed by Schalock’s Quality of Life Framework, conceptual content of measures of emotional wellbeing and self-determination were compared. The acceptability and concurrent validity of IDS-TILDA measures were evaluated. Results: The same measures of emotional wellbeing were identified in both surveys. However, measures of self-determination captured different aspects of the construct. Concurrent validity between self-determination and emotional wellbeing measures in IDS-TILDA was weak. Conclusions: Research with adults with and without ID is limited by the nature of current inclusive QOL measures: Instruments are required that have adequate conceptual coverage and are comparable across groups but appropriate and feasible to use. (Edited publisher abstract)
Confidence of group home staff in supporting the health needs of older residents with intellectual disability
- Authors:
- WEBBER Ruth, BOWERS Barbara, BIGBY Christine
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 41(2), 2016, pp.107-114.
- Publisher:
- Taylor and Francis
Background: Increased life expectancy for people with intellectual disability is accompanied by increased age-related health concerns. People ageing with intellectual disability experience more health conditions and are relocated to aged care earlier than their age peers. Method: Group home staff were surveyed about their (a) training and confidence in 11 health conditions and 7 health procedures, and (b) attitude to relocating residents with health needs to aged care. Results: Staff training in each of 10 health conditions and 7 health procedures was positively associated with increased confidence in supporting residents with those health issues. Higher staff confidence in caring for residents with 9 conditions and requiring 4 procedures was negatively associated with a likelihood of recommending that a person with those health needs should relocate to aged care. Conclusions: Targeted training of staff in age-related health issues may contribute to better health care and delay residents relocating to aged care. (Publisher abstract)
Factors associated with the amount of public home care received by elderly and intellectually disabled individuals in a large Norwegian municipality
- Authors:
- DOHL Oystein, et al
- Journal article citation:
- Health and Social Care in the Community, 24(3), 2016, pp.297-308.
- Publisher:
- Wiley
This study reports an analysis of factors associated with home care use in a setting in which long-term care services are provided within a publicly financed welfare system. The study considered two groups of home care recipients: elderly individuals and intellectually disabled individuals. Routinely collected data on users of public home care in the municipality of Trondheim in October 2012, including 2493 people aged 67 years or older and 270 intellectually disabled people, were used. Multivariate regression analysis was used to analyse the relationship between the time spent in direct contact with recipients by public healthcare personnel and perceived individual determinants of home care use (i.e. physical disability, cognitive impairment, diagnoses, age and gender, as well as socioeconomic characteristics). Physical disability and cognitive impairment are routinely registered for long-term care users through a standardised instrument that is used in all Norwegian municipalities. Factor analysis was used to aggregate the individual items into composite variables that were included as need variables. Both physical disability and cognitive impairment were strong predictors of the amount of received care for both elderly and intellectually disabled individuals. The study identified a negative interaction effect between physical disability and cognitive impairment for elderly home care users. For elderly individuals, results also found significant positive associations between weekly hours of home care and having comorbidity, living alone, living in a service flat and having a safety alarm. The reduction in the amount of care for elderly individuals living with a cohabitant was substantially greater for males than for females. For intellectually disabled individuals, receiving services involuntarily due to severe behavioural problems was a strong predictor of the amount of care received. The analysis showed that routinely collected data capture important predictors of home care use and thus facilitate both short-term budgeting and long-term planning of home care services. (Edited publisher abstract)
Ageing in people with intellectual disability as it is understood by group home staff
- Authors:
- KAHLIN Ida, KJELLBERG Anette, HAGBERG Jan-Erik
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 41(1), 2016, pp.1-10.
- Publisher:
- Taylor and Francis
Background: The number of older residents in group homes for people with intellectual disability (ID) is increasing. This interview study was focused on how group home staff address issues of ageing and being old among people with ID. Method: Twelve members of staff at 4 different group homes in Sweden were interviewed. Results: Findings revealed old age as something unarticulated in the group home. Group home staff felt unprepared to meet age-related changes in residents. The study also revealed that group home staff had a one-tracked way of describing the process of ageing among people with ID, which was seemingly rooted in a medical paradigm of disability. Conclusion: Based on this study's findings, we suggest that there is a need to raise issues and give guidance related to ageing and ID in disability policy documents to support the development of a formal culture that addresses old age and ID in disability services. (Publisher abstract)
Wales’ safeguarding policy and practice: a critical analysis
- Author:
- PHILLIPS Carys
- Journal article citation:
- Journal of Adult Protection, 18(1), 2016, pp.14-27.
- Publisher:
- Emerald
Purpose: The safeguarding and protection components of the Social Services and Well-being (Wales) Act 2014 offers the culmination of four years consultation in England and Wales by the Law Commission and many years of evolving policy and practice with a view to protecting adults from harm. The purpose of this paper is to offer both scrutiny and challenge for Wales’ policy makers and practitioners alike. Design/methodology/approach: The paper is a critical analysis of both current responses and forthcoming changes. Findings: The paper proposes that Wales has failed to implement previous recommendations in relation to institutional abuse. Currently in Wales, there are individuals employed in safeguarding lead roles who have no social care qualification. This apparent “loophole” has not to date been highlighted to date by either of the regulatory bodies within Wales (CSSIW/CCfW). Research limitations/implications: The paper offers a viewpoint but leaves some questions unanswered. Practical implications: The Williams Review in April 2014 is set to change the local authority landscape in Wales. There is scope for developing the function of adult safeguarding. Social implications: Wales’ failure to recognize institutionalized abuse as a distinct category may have had impacted on its ability to respond to abuse in nursing and care as well hospital settings. (Edited publisher abstract)
Social connections for older people with intellectual disability in Ireland: results from wave one of IDS-TILDA
- Authors:
- McCAUSLAND Darren, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 29(1), 2016, pp.71-82.
- Publisher:
- Wiley
Background: The literature on influences of community versus congregated settings raises questions about how social inclusion can be optimised for people with intellectual disability. This study examines social contacts for older people with intellectual disability in Ireland, examining differences in social connection for adults with intellectual disability and other adults. Materials and Methods: Data were drawn from the IDS-TILDA study in Ireland. A nationally representative sample (n = 753) included adults aged 40 years and older, with additional comparison with general population participants. Predictors of social contacts were explored. Results: Residence, level of intellectual disability and age were significant factors determining social contact. People in institutional residences, older respondents and those with severe/profound intellectual disability had the lowest levels of contact; older adults with intellectual disability had much lower rates than general population counterparts. Conclusions: Community-dwelling people with intellectual disability have greater social contact than those living in institutions, but levels are below those for other adults in Ireland. (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)
Ageing with a learning disability: self-building peer support to combat loneliness and social isolation
- Authors:
- POWER Andrew, BARTLETT Ruth
- Journal article citation:
- Generations Review, 26(2), 2016, pp.23-27.
- Publisher:
- British Society of Gerontology
This article summarises findings from a small scale study to look at whether peer-advocacy support can help reduce loneliness and social isolation in adults who are ageing with learning disabilities. The context for the study was an increase in the numbers of people with learning disabilities who are more vulnerable to social isolation due to reductions in the provision of day services, both due to cuts in funding and the personalisation agenda. The study was co-designed with two self-advocates with learning disabilities and two professional advocates. A total of 12 interviews with participants in two age groups: 40-55 and 55+ were conducted. The study identified a small range of local peer-support groups around the urban region where the study took place which enabled people to meet other self-advocates who they felt comfortable with. As well as relieving feelings of loneliness and isolation; the groups offered participants the opportunity to learn new skill and participate in the community. (Edited publisher abstract)
The role of the general practice surgery in safeguarding adults
- Authors:
- GIBSON Jeremy C., et al
- Journal article citation:
- Journal of Adult Protection, 18(5), 2016, pp.288-298.
- Publisher:
- Emerald
Purpose: First, the authors summarise arrangements expected from general practice (GP) surgeries, to optimise their safeguarding adults role. Second, using case-based discussions, the authors present specific safeguarding pathways (through which the authors have produced a downloadable interactive app) that the authors have developed to help Derbyshire GPs respond appropriately to safeguarding adults concerns. Third, the authors present the Derbyshire clinical commissioning Groups’ (CCG) approach to seeking assurance from their GPs that they have effective safeguarding adults arrangements in place. The paper aims to discuss these issues. Design/methodology/approach: The authors have based the paper on relevant current UK legislation and national guidance, the local approach to seeking assurance from GP surgeries; the authors adjusted the pathways on the basis of feedback received from eight out of 103 (7.76 per cent response rate) Derbyshire GP safeguarding leads who responded to an e-mail containing draft pathways. Findings: Primary care staff are ideally placed to identify safeguarding adults issues and to act to protect those who are at risk of abuse or neglect. Originality/value: The authors are unaware of any other paper that does all of the following: summarises policies GP surgeries should implement regarding safeguarding adults; details core competencies required of GPs regarding safeguarding adults; presents how CCGs can seek assurance from GP surgeries regarding safeguarding adults; and presents straightforward pathways for specific safeguarding adults scenarios. In one paper, now published in the British Journal of General Practice, the authors presented a generic safeguarding adults pathway. (Publisher abstract)
The state of Shared Lives in England: report 2016
- Author:
- SHARED LIVES PLUS
- Publisher:
- Shared Lives Plus
- Publication year:
- 2016
- Pagination:
- 32
- Place of publication:
- Liverpool
This report draws on a survey of Shared Lives Plus members across the country to provide an analysis of services across England, covering the period 2014/15. The report includes figures on numbers of people using Shared Lives services, the number of carers, staff turnover and motivation, types of arrangement (live in, short breaks and day support) and numbers of users by region. The results show that the number of people using Shared Lives support is continuing to rise. In 2014/15 11,570 people were getting help from Shared Lives compared to 10,440 in 2013/14. People with learning disabilities remain the primary users of Shared Lives support, accounting for 76% of all users. The next largest group getting help via Shared Lives were people with mental health problems who made up 7% of users. The survey also reports a rise in both the number of older people and people with dementia using Shared Lives. There has also been an increase of over 50% in use of Shared Lives as day support. Projected cost savings are provided to show the total savings that could be made if Shared Lives reached its full potential. Short case studies are also included to illustrate the benefits of Shared Lives schemes. (Edited publisher abstract)