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Why some adults with intellectual disability consult their general practitioner more than others
- Authors:
- TURK V., et al
- Journal article citation:
- Journal of Intellectual Disability Research, 54(9), September 2010, pp.733-842.
- Publisher:
- Wiley
A secondary analysis was undertaken of data obtained from a stratified randomised sample of adults with intellectual disabilities (AWIDs) participating in a cluster randomised trial of hand held health records. Two hundred and one AWIDs and/ or their carers from 40 GP practices across two London boroughs participated (response rate 64.6%), with GP consultation data extracted for 187 AWIDs. AWIDs and their carers were given separate health interviews using identical/adapted questions where possible. Overall consulting levels were lower than expected; 3.2 per annum for women and 2.2 for men. Increased age, gender (women) and type of carer (paid) were all significantly associated with increased consultations. Carers reporting health problems, medications reported by AWIDs, medications recorded in GP records, and pain reported by AWIDs also affected consultations after adjustment for age and type of carer. It is suggest that targeted interventions are needed to improve attendance and promote health.
Love, learning disabilities and pockets of brilliance: how practitioners can make a difference to the lives of children, families and adults
- Author:
- RYAN Sara
- Publisher:
- Jessica Kingsley
- Publication year:
- 2020
- Pagination:
- 176
- Place of publication:
- London
This book shares experiences of what brilliant care and support can look like for families with learning disabled or autistic children and adults. The author steers clear of jargon and 'doublespeak' to conjure authentic experiences of families. Speaking with families and professionals, she conveys the love, laughter and joy which binds families and the harsh realities many face; of separation from loved ones, substandard care and frustration and helplessness in the face of inflexible services. From their experiences, the author looks to capture those pockets of brilliance that families have encountered, and which outstanding practitioners have pioneered, for us all to learn from. (Edited publisher abstract)
Effect of the COVID‐19 pandemic on the mental health of carers of people with intellectual disabilities
- Authors:
- WILLNER Paul, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 33(6), 2020, pp.1523-1533.
- Publisher:
- Wiley
Introduction: The measures implemented to manage the COVID‐19 pandemic have been shown to impair mental health. This problem is likely to be exacerbated for carers. Method: Informal carers (mainly parents) of children and adults with intellectual disabilities, and a comparison group of parents of children without disabilities, completed an online questionnaire. Almost all the data were collected while strict lockdown conditions were in place. Results: Relative to carers of children without intellectual disability, carers of both children and adults with intellectual disability had significantly greater levels of a wish fulfilment coping style, defeat/entrapment, anxiety, and depression. Differences were 2–3 times greater than reported in earlier pre‐pandemic studies. Positive correlations were found between objective stress scores and all mental health outcomes. Despite their greater mental health needs, carers of those with intellectual disability received less social support from a variety of sources. Conclusions: The greater mental health needs of carers in the context of lesser social support raises serious concerns. We consider the policy implications of these findings. (Edited publisher abstract)
What influences women with intellectual disabilities to attend breast screening? Experiences of women who have and have not participated
- Author:
- WILLIS Diane S.
- Journal article citation:
- British Journal of Learning Disabilities, 44 (4), 2016, pp.269-276.
- Publisher:
- Wiley
Background: Despite breast screening in Britain being free to all women within the allotted age range, uptake of this service is often poor in women with intellectual disabilities. Reasons put forward are numerous, including poor knowledge, pain and difficulty travelling to the centre. However, what influences the decision to attend is rarely discussed. Methods: Twelve semi-structured interviews and three focused observation were undertaken with women with intellectual disabilities to explore what influenced them to participate in breast screening and their experience of having mammography. Data were analysed thematically using a blended framework. Results: Despite the experience of mammography being negative, high uptake of breast screening services was reported in this study. Pain and previous poor treatment in hospital were reasons for nonparticipation in breast screening. Although awareness about breast screening varied, those who had previous breast problems were more knowledgeable; however, there was poor awareness of the risks of hereditary breast cancer. Overall, paid-carers were found to play a key role, as means of support, information and a potential influence in determining participation in breast screening. Conclusions: There was general equality of access but an inequality in the preparation and delivery of the service which was dependent on a complex range of issues and relationships. Key to participation was preparation with the paid-carer facilitating discussions about breast screening were key to participating in mammography. This has implications on the future direction of funding and policy making. Risks associated with hereditary breast cancer and earlier presentation of breast tumours also needs highlighting. (Edited publisher abstract)
‘It terrifies me, the thought of the future’: listening to the current concerns of informal carers of people with a learning disability
- Authors:
- MANSELL Ian, WILSON Christine
- Journal article citation:
- Journal of Intellectual Disabilities, 14(1), March 2010, pp.21-31.
- Publisher:
- Sage
- Place of publication:
- London
Carers of someone with a learning disability have additional responsibilities as the person they care for is often dependent on them for their overall health and well-being. The findings from a study that asked carers for their views on a wide range of topics are reported. A mixed method design yielded both quantitative and qualitative data. A total of 647 members of a parent/carer federation were sent a questionnaire with a section on ‘current concerns’. The response rate was 23 percent (151 participants). Two focus groups were held with 15 carers who had completed the questionnaire. Findings revealed such issues of concern to carers that included: access to health and social care information and services; quality and quantity of respite care; suitable educational provision; independence and quality of life (for a person with learning disability); and what would happen to the person with learning disability when the carer was no longer able to carry out their caring role.
Inequalities in respite service provision: insights from a national, longitudinal study of people with intellectual disabilities
- Authors:
- McCONKEY Roy, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 23(1), January 2010, pp.85-94.
- Publisher:
- Wiley
Using data from a national database in Ireland of around 16,000 people with learning disabilities living with family carers, the availability of overnight respite provision was monitored over an 8-year period along with the recorded needs for such services. Despite marked rises in the number of people receiving respite breaks resulting from increased government funding, there were marked inequalities in the availability of provision across the country. In recent years the inequalities decreased but still remained. The proportion of families requiring breaks also rose and a similar pattern of inequalities were found here too. This study highlighted some of the complexities in reducing inequalities in the provision of respite services and in identifying the need for them. It would be advantageous to develop more explicit criteria regarding the need for respite provision and to record the family's preferences for the form this provision might take. These adjustments would add to the value of any national database as a service planning tool.
Access to secondary healthcare for people with intellectual disabilities: a review of the literature
- Authors:
- BACKER Clare, CHAPMAN Melanie, MITCHELL Duncan
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 22(6), November 2009, pp.514-525.
- Publisher:
- Wiley
There is growing evidence that people with intellectual disabilities have greater healthcare needs than the general population and that these needs are often unmet. Recently, increasing attention has been drawn to poor care received by people with intellectual disabilities when admitted to hospital. A literature search was conducted to identify studies on experiences of secondary healthcare for people with intellectual disabilities. Studies were published between January 1990 and March 2008. Thirteen studies were identified. Important influences on the experience of hospital care were: individual factors; the carer's role; the attitudes, knowledge and communicative style of health staff; and the physical environment. A range of recommendations and initiatives have been developed to improve hospital care. It is concluded that more research is needed, given that so few studies are published in this area. Initiatives to improve access to secondary healthcare need to be evaluated to inform the development of services.
Supporting learning disability partnership boards to implement the national carers strategy
- Authors:
- MAGRILL Dalia, TOWERS Christine, MORGAN Hazel
- Publisher:
- Great Britain. Department of Health
- Publication year:
- 2009
- Pagination:
- 18p.
- Place of publication:
- London
This document aims to inform Learning Disability Partnerships about the National Carers Strategy. It includes information to ensure that local plans for all carers include carers of people with learning disabilities and carers with a learning disability. The document is in four parts, and covers: Joining up the National Carers Strategy and Valuing People Now; what the Government is already doing to support carers; Carers at the Heart of the 21st Century Families and Communities - the new National Carers Strategy and questions that a partnership board can use to check what is happening in their area to make the National Carers Strategy Happen.
Emergency psychiatric services for individuals with intellectual disabilities: caregivers' perspectives
- Authors:
- WEISS J.A., et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 22(4), July 2009, pp.354-362.
- Publisher:
- Wiley
Strains on the mental health system and inaccessible services for individuals with intellectual disabilities (ID) often force caregivers to bring individuals with ID to the emergency department (ED) when in psychiatric crisis. The purpose of this study was to understand the experience of caregivers and adults with ID and mental health issues, according to caregivers' perspectives. Focus groups were conducted with one group of unpaid caregivers (i.e. family members) and two groups of paid caregivers (i.e. staff from community agencies) from Ontario, Canada. Caregivers identified a number of issues centring on a lack of services, on respect, on knowledge and on expertise. Diagnostic overshadowing and overmedication were also prevalent concerns. The authors conclude that input from caregivers points to deficiencies in the system that lead them to use the ED when other options have been exhausted. A number of recommendations can be implemented to improve the emergency psychiatric care of adults with ID in the ED.
Making your voice heard: a guide to local government: accessible version
- Author:
- MENCAP
- Publisher:
- Mencap
- Publication year:
- 2004
- Pagination:
- 17p.
- Place of publication:
- London
A guide how local government works and what it does plus how users can encourage local government to improve services for people with a learning disability and their families and carers.