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What do we know about the health and health care of people with intellectual disabilities from minority ethnic groups in the United Kingdom? A systematic review
- Authors:
- ROBERTSON Janet, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 32(6), 2019, pp.1310-1334.
- Publisher:
- Wiley
Background: People with from minority ethnic communities face inequalities in health and health care. This systematic review considers the question of what is known about the health and health care of children and adults with intellectual disabilities from ethnic minority communities in the UK. Method: Studies published from 1990 to 2018 were identified via electronic literature databases, email requests and cross‐citations. Studies were reviewed narratively in relation to identified themes. Results: Twenty‐three studies were identified, most commonly focusing on South Asian communities. Very little information was identified on physical health or physical health care, with the identified evidence tending to focus on mental health care, access to specialist intellectual disability services, and inpatient services. Conclusion: Little is known about the health status of people with intellectual disabilities from minority ethnic groups in the UK. It is clear that they may experience barriers to accessing specialist intellectual disability services and other forms of health care. (Edited publisher abstract)
The association between employment and the health of people with intellectual disabilities: a systematic review
- Authors:
- ROBERTSON Janet, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 32(6), 2019, pp.1335-1348.
- Publisher:
- Wiley
Background: There is strong evidence indicating that paid employment is generally good for the physical and mental health of the general population. This systematic review considers the association between employment and the health of people with intellectual disabilities. Methods: Studies published from 1990 to 2018 were identified via electronic literature databases, email requests and cross‐citations. Identified studies were reviewed narratively. Results: Twelve studies were identified. Studies were generally consistent in reporting an association between being in paid employment and better physical or mental health status. Conclusions: This review supports the view that the well‐established association between employment and better health is similar for adults with and without intellectual disabilities. However, evidence establishing causality is lacking and further research to determine specific health benefits attributable to employment for people with intellectual disabilities and the causal pathways that operate is required. (Publisher abstract)
Service responses to people with intellectual disabilities and epilepsy: a systematic review
- Authors:
- ROBERTSON Janet, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 30(1), 2017, pp.1-32.
- Publisher:
- Wiley
Background: Epilepsy is highly prevalent in people with intellectual disabilities and is associated with increased mortality and high healthcare usage. This systematic review summarises research on service responses to people with intellectual disabilities and epilepsy. Method: Studies published from 1990 were identified via electronic searches using Medline, Cinahl, PsycINFO and Web of Science, email requests to researcher networks, and cross-citations. Information extracted from studies was reviewed narratively in relation to identified themes. Results: Thirty-five studies met the inclusion criteria. Overall study quality was low, with no RCTs or similarly robust intervention study designs. Access to specialists was inconsistent. The importance of proxies and the need for education regarding epilepsy for staff, carers and people with intellectual disabilities were highlighted. Conclusion: There are no methodologically robust studies on service-related interventions for people with intellectual disabilities and epilepsy. Further research on improving service delivery is required to substantiate findings reported here. (Publisher abstract)
The impacts of short break provision on families with a disabled child: an international literature review
- Authors:
- ROBERTSON Janet, et al
- Journal article citation:
- Health and Social Care in the Community, 19(4), July 2011, pp.337-371.
- Publisher:
- Wiley
Underlying the commitment of successive governments to provide short breaks for families with a disabled child are widespread assumptions about the potential benefits of short breaks on family carers and disabled children. This review aimed to evaluate the existing international research evidence concerning the impacts of short breaks on families with a disabled child. Comprehensive electronic literature searches were conducted and requests for information were sent to selected email lists. Of 60 articles or reports identified for inclusion in the review, the vast majority of studies were cross-sectional, with only 8 studies using quasi-experimental pre-post designs or longitudinal designs. Despite the methodological limitations, the consistency with which some findings have been reported suggests that short breaks appear to have the potential to positively impact on not only the well-being of carers, but also the children receiving short breaks and their families as a whole. Further research is warranted to address the experiences of fathers and siblings of disabled children, and examine the long-term impact of short breaks within the contexts of other family support services.
The impacts of short break provision on disabled children and families: an international literature review
- Authors:
- ROBERTSON Janet, et al
- Publisher:
- Great Britain. Department for Children, Schools and Families
- Publication year:
- 2010
- Pagination:
- 86p.
- Place of publication:
- London
For over 30 years, short breaks have been part of support provision for families with a disabled child. Short breaks are designed for disabled children to spend time in the company of other people than their primary family carers, both to give family carers a break and to allow children the opportunity to have new experiences with a wider range of people outside the immediate family. This review aimed to systematically evaluate the research evidence concerning the impact of short breaks. Searches of several databases were conducted in July 2009 of literature from 1980 onwards in English that include information on the impact of short break provision on disabled children and families. A total of 56 articles or reports were identified for inclusion in this review: 17 were from the US, 29 from the UK, 3 from Ireland, 5 from Canada, and 1 from Australia. The most common focus of research has been the impact of short breaks on carer stress or other measure of carer well-being. As well as discussing this, the review also considers the evidence relating to: the impact of short breaks on family functioning; the impact of short breaks on disabled children; the impact of short breaks on the siblings of disabled children; and the impact of short breaks on seeking permanent out-of-home placement; preventing hospital admissions; hospice based short breaks for children with life limiting conditions; the negative impacts of short breaks; reported problems with using short break services; the limitations of short breaks; and what type of short break is best.
Reported barriers to the implementation of person-centred planning for people with intellectual disabilities in the UK
- Authors:
- ROBERTSON Janet, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 20(4), July 2007, pp.297-307.
- Publisher:
- Wiley
Research in the US and UK has demonstrated the effectiveness of person-centred planning (PCP) for people with intellectual disabilities. However, it is important to acknowledge problems that arise when implementing PCP. This paper considers barriers to PCP reported during a longitudinal study of the impact of PCP. Person-centred planning was introduced over a 2-year period for 93 people of whom 65 had a plan developed. Information was collected regarding barriers to PCP every 3 months from key informants using self-completion questionnaires. Barriers to PCP were widespread particularly in relation to: availability of trained facilitators; availability of services; lack of time and reluctance of people other than paid support staff to engage in the PCP process. It is concluded that services need to be aware of potential barriers to PCP so that strategies can be developed to overcome them, the first of which should be the ongoing training and support of facilitators.
The impact of person centred planning
- Authors:
- ROBERTSON Janet, et al
- Publisher:
- Lancaster University. Institute for Health Research
- Publication year:
- 2005
- Pagination:
- 125p.
- Place of publication:
- Lancaster
The initial results show that person centred planning led to positive changes for individuals. Some changes were short-lived, but some continued beyond the end of the project. People experienced ongoing positive changes in the size of their social networks, their circle of friends, their presence in the community and the extent and range of their daytime activities. Changes were also seen in people’s contact with their families and the amount of choice available to them, but these improvements were not sustained. People with a plan were more likely to have access to some advocacy and health services. Some negative changes were reported in relation to people’s emotional, behavioural and health problems. These findings are not entirely surprising given that some people find change stressful; that new environments are more likely to seem risky (whether they really are or not); and that person centred planning tends to highlight existing health problems and get help with them. The overall message is that person centred planning was beneficial for people taking part in the study. It is also effective as a policy in promoting community involvement, changing daytime activities, extending contacts with families and friends, and improving choice for people with learning disabilities.
Quality and costs of community-based residential support for people with learning difficulties and challenging behaviour
- Authors:
- ROBERTSON Janet, et al
- Publisher:
- University of Lancaster. Institute for Health Research
- Publication year:
- 2002
- Pagination:
- 24p.
- Place of publication:
- Lancaster
The aim was to compare the quality and costs of two approaches to providing community-based residential supports to people with learning disabilities and challenging behaviour: non-congregate settings where the minority of residents have challenging behaviour; and congregate settings where the majority of residents have challenging behaviour. Congregate care was associated with higher costs, higher staffing ratios, and better quality internal working practices. However, these inputs did not translate to better outcomes for residents. Non-congregate care was associated with greater access to day activities, less reliance of medication and physical restraint to control challenging behaviour, and less risk. Levels of staff contact and participant engagement were low across both models of care.
Staff stress and morale in community-based settings for people with intellectual disabilities and challenging behaviour: a brief report
- Authors:
- ROBERTSON Janet, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 18(3), September 2005, pp.271-277.
- Publisher:
- Wiley
This study looked at stress, morale and intended job turnover in staff in two types of community-based residential supports: non-congregate settings where the minority of residents have challenging behaviour; and congregate settings where the majority of residents have challenging behaviour. A self-completion survey questionnaire was used to collect information on the basic characteristics of staff, levels of staff stress, job satisfaction and propensity to leave their employment. One hundred and fifty-seven questionnaires were returned from staff, the majority of whom were on fixed-term contracts. Congregate settings were not associated with higher levels of stress as might be assumed. Overall, over a quarter of staff reached criterion on the General Health Questionnaire-12 for experiencing emotional distress, and over a third were likely to actively seek new employment in the next year. The greatest perceived sources of stress were lack of resources and lack of staff support. The lowest level of satisfaction was with the rate of pay. Those in non-congregate settings reported greater perceived stress because of lack of procedures to deal with challenging behaviour. The authors concluded that high levels of intended staff turnover may be more due to job insecurity and lack of support than service user challenging behaviour. Employers seeking to reduce turnover should pay attention to basic pay and conditions, as well as staff training in appropriate methods for dealing with challenging behaviour.
Community-based Residential Supports for People with Intellectual Disabilities and Challenging Behaviour: The Views of Neighbours
- Authors:
- ROBERTSON Janet, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 18(1), March 2005, pp.85-92.
- Publisher:
- Wiley
The issue of the views of neighbours of community-based residential supports for people with intellectual disabilities and challenging behaviour has not been examined till date. This study looks at the views of neighbours of two types of community-based residential supports: non-congregate settings where the minority of residents have challenging behaviour; and congregate settings where the majority of residents have challenging behaviour. A self-completion questionnaire was used to collect information on contact between neighbours, residents and staff, and the views of neighbours. Information was also collected by semi-structured interview with service staff on the characteristics of settings. Sixty-four questionnaires were returned. Contact between neighbours and service users was limited for both types of setting, with two-thirds of neighbours not knowing any service users by name, and a third having had no active contact with service users. Neighbours of non-congregate settings were more likely to think that community care was a 'good policy' (76%) than neighbours of congregate settings (53%) and to believe that there were benefits to the neighbourhood from having the group home in the area (46% versus 29%) but these differences were not significant. Contact with people with intellectual disabilities was associated with more positive attitudes to community care and specific characteristics of the settings. Contact between neighbours and people with severe intellectual disabilities and challenging behaviour is limited. However, the majority of neighbours are positive about community care and the problems reported by neighbours are predominantly minor. The results point to the key role that contact plays in fostering positive attitudes. Findings regarding differences between congregate and non-congregate settings are limited by the small number of responses from neighbours of congregate settings.