Search results for ‘Subject term:"learning disabilities"’ Sort:
Results 1 - 10 of 12
The impact of austerity measures on people with intellectual disabilities in England
- Authors:
- FORRESTER-JONES Rachel, et al
- Journal article citation:
- Journal of Long-Term Care, August 2021, pp.241-255. Online only
- Publisher:
- King's College London
- Place of publication:
- London
Context: UK austerity measures following the 2008 financial crisis included budget reductions for health and social care. This study aimed to investigate the extent to which austerity-measures had impacted the lives of people with intellectual disabilities in England, and whether their support costs were associated with their characteristics, needs and outcomes. Objectives: this paper reports on what services people with intellectual disabilities were using, whether they had lost care, the costs of their support, and what impact any loss of benefits and services had on individuals’ lives. Methods: 150 participants with intellectual disabilities across England were interviewed about their services and their well-being. Service and individual support costs were calculated. Statistical and thematic analyses were employed. Results: The largest proportion (42%) of the sample had lost care. 14% had experienced changed care, and care had remained the same for 36%. Only 7% said their care had improved. No associations were found between costs and characteristics and needs except for whether the person had mild or severe intellectual disabilities. Those who had lost care engaged in fewer activities and had significantly lower self-esteem and quality-of-life scores compared with those who had not lost care. Loss of care impacted on individuals’ independence and future aspirations. Limitations: A comparative study of austerity impacts across the whole of England was not possible. The costs data may be underestimated because full information on support from home, key, or support workers was unavailable. Implications: In attempting to mitigate against COVID-19 impacts on people with intellectual disabilities, policy-decisions will need to consider the backlog of a decade of cuts. (Edited publisher abstract)
The experiences of older carers of people with learning disabilities: “I just carry on with it"
- Author:
- FORRESTER-JONES Rachel
- Journal article citation:
- Tizard Learning Disability Review, 26(1), 2021, pp.48-57.
- Publisher:
- Emerald
Purpose: Because people with learning disabilities (LD) are living longer, their family carers are likely to continue their caring role for longer. This study aims to explore the experiences of older carers of people with LD. Design/methodology/approach: In total, 16 interviews with older carers were carried out and analysed qualitatively. Findings: Three main themes emerged from the data: “transition to retirement is a misnomer”; “impact of caring role”; and “fears for the future”. Originality/value: Previous studies have not focussed on the specific experiences of “older” carers and their situation risks going unnoticed. Their experiences should be acknowledged by services and society and meaningful support provided. (Edited publisher abstract)
Experiential learning: changing student attitudes towards learning disability
- Authors:
- SMITH Carly, FORRESTER-JONES Rachel
- Journal article citation:
- Tizard Learning Disability Review, 19(3), 2014, pp.110-117.
- Publisher:
- Emerald
Purpose: This paper analyses the reflective journals kept by 62 students researching and interviewing people with learning disabilities. The aim was to explore the content and discover any themes that were generated throughout the journals as a result of the pre-, during- and post-interview process. Design/methodology/approach: The method used to analyse the journals was Interpretative Phenomenological Analysis (Smith and Osborn, 2008). Findings: The results showed that there was a shift from negative to positive reflections as the frequency of contact with people with learning disabilities increased and that the majority of students reported a change in attitude towards this group of individuals after experiencing direct contact (two to three meetings over a period of two months). Research implications: Implications of the findings are for government policies, promoting social inclusion through education, to offer the opportunity for direct contact with people with learning disabilities, (in keeping with Allport's, 1954 Contact Theory) at an earlier stage in education, fostering an environment for earlier attitude change and increased social inclusion. Social implications: Changing society's attitude through our education system may decrease marginalisation by the public as well as discriminatory and abusive behaviour found in some social and community care settings. (Edited publisher abstract)
The road barely taken: funerals, and people with intellectual disabilities
- Author:
- FORRESTER-JONES Rachel
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 26(3), 2013, pp.243-256.
- Publisher:
- Wiley
This small exploratory UK study sought to investigate how practitioners deal with the topic of funerals and to capture the views of older people with and without intellectual disabilities about funerals. A semi-structured questionnaire was administered to 40 service managers, and five focus groups for 26 people with and without intellectual disabilities were facilitated. Questionnaires were subjected to thematic content analysis; focus group data were analysed using a grounded theory approach. Managers demonstrated confusion about organizing the funerals of people with intellectual disabilities. Few differences existed between the views of people with and without intellectual disabilities in relation to funerals and a number of core themes were identified including the lack of opportunities to attend funerals. More thought and practical interventions are needed to support vulnerable people to participate in the funerals of people they know. (Edited publisher abstract)
Experiences of going to court: witnesses with intellectual disabilities and their carers speak up
- Authors:
- BECKENE Tessy, FORRESTER-JONES Rachel, MURPHY Glynis H.
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 33(1), 2020, pp.67-78.
- Publisher:
- Wiley
Background: People with intellectual disabilities are more vulnerable to sexual abuse and are more disadvantaged in the criminal justice system than the general population. However, little is known about the experiences of people with intellectual disabilities who have allegedly been victims of sexual abuse and also been witnesses in court. Materials and Methods: This study used semi‐structured interviews and a Grounded Theory approach to examine the experiences of four people with intellectual disabilities and four carers/supporters who had all attended trials. Results: Findings showed that after the traumatic incident of abuse, a court experience could become a secondary source of trauma. Experience of this trauma was dependent on the quality and quantity of support people received and the understanding of intellectual disabilities amongst the legal participants. Conclusion: The findings argue for better training for legal participants who are in contact with vulnerable witnesses and better support structures for alleged victims. (Publisher abstract)
Spirituality and social networks of people with intellectual and developmental disability
- Authors:
- SANGO Precious Nonye, FORRESTER-JONES Rachel
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 43(3), 2018, pp.274-284.
- Publisher:
- Taylor and Francis
Background: Researchers contend that religious and spiritual communities may provide a conduit to friendship for people with IDD. This research explored the interface between social networks and spirituality for individuals with IDD living in either a faith or non-faith based service. Method: A mixed-methods approach was used including semi-structured interviews, the Social Network Guide and the Spiritual Belief Inventory-15R with individuals with IDD (or staff members who provided their opinions of what individuals who lacked capacity to consent would say if they had capacity). These findings were corroborated with extensive field notes generated from participant observation. Results: The faith-based group had a higher network size (m = 78) compared to the non-faith based group (m = 44). Those with larger social networks also reported higher SBI-15R scores. Conclusion: Findings highlight the possible role of social, religious and spiritual activities for expanding individuals’ social networks. (Edited publisher abstract)
‘Disability means, um, dysfunctioning people’: a qualitative analysis of the meaning and experience of disability among adults with intellectual disabilities
- Authors:
- MONTELEONE Rebecca, FORRESTER-JONES Rachel
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 30(2), 2017, pp.301-315.
- Publisher:
- Wiley
Background: There has been little qualitative analysis of the experience of stigma, social comparisons and conception of identity among adults with intellectual disabilities (ID). This study aimed to develop an understanding of how adults with intellectual disabilities experience their own disability, and any implications relating to self-esteem, stigma and social interactions. Materials and Methods: Fifteen adults with intellectual disabilities were interviewed using semi-structured, open-ended questions regarding disability, social interactions and self-esteem. Interviews were analysed independently by two researchers using interpretive phenomenological analysis. Results: Three major themes emerged during analysis, exploring pressure on participants to behave in a socially normative way, tendency to produce personal definitions of disability and consistently limited knowledge of and discomfort around common disability terminology. Conclusions: Participants' clearly experienced feelings of difference, despite a lack of articulation. Limited understanding of both terminology and conceptualization of disability status could negatively impact self-esteem, person-centred actions and political movement. (Publisher abstract)
Older carers of people with learning disabilities: their experiences with local authority assessment processes and personnel
- Author:
- FORRESTER-JONES Rachel
- Journal article citation:
- Tizard Learning Disability Review, 26(2), 2021, pp.105-113.
- Publisher:
- Emerald
Purpose: Amongst other actions the Care Act 2014 emphasised the duties of local authorities (LA) to assess the needs of carers, as well as those they care for and to meet all eligible needs for support. This paper aims to report the findings of a study which explored the experiences of older carers of people with learning disabilities as they navigated LA assessment processes and personnel. Design/methodology/approach: Using an explorative design, 21 older carers were interviewed about their experiences. Interview transcripts were qualitatively analysed. Findings: Three main themes were identified, namely, needs assessments as ambitions, not outcomes; the effects of funding-cuts projected onto carers; and challenges with social care personnel. Originality/value: The study findings attracted a high level of engagement with public awareness and mainstream news and social media. The LA also immediately responded with interventions to address some of the findings, including carer “drop-in” sessions. They are also adapting their carer’s needs assessment processes as a result of the study. It is hoped that the issues raised will be of interest to other social care providers and practitioners. (Edited publisher abstract)
Spiritual care for people with intellectual and developmental disability: an exploratory study
- Authors:
- SANGO Precious Nonye, FORRESTER-JONES Rachel
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 44(2), 2019, pp.150-160.
- Publisher:
- Taylor and Francis
Background: A faith-based (pseudonym, Adam’s House – AH) and a non-faith-based care service (pseudonym, Greenleaves – GL) were explored to find out if and how spiritual support was provided for people with intellectual and developmental disabilities (IDDs). Method: Six months were spent volunteering within each service and a mixed-methods approach was utilised including applied and ethnographic methods to explore and describe if and how spirituality was embedded within the two services. Results: Themes found included community of value; homely functional care; and barriers to spiritual care. GL staff tended to provide what we termed “religious spiritual care” while AH staff administered both “religious” and “non-religious” spiritual-based support. This difference may be related to the type of training found only at AH which included spiritual dimensions. Conclusion: Services could benefit from acknowledging the importance and significance of spiritual care training and education for effective and varied spiritual care for people with IDD who desire such support. (Edited publisher abstract)
People with intellectual disabilities at the end of their lives: the case for specialist care?
- Authors:
- FORRESTER-JONES Rachel, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 30(6), 2017, pp.1138-1150.
- Publisher:
- Wiley
Background: People with intellectual disabilities have a shorter life expectancy, but healthcare improvements mean that they are beginning to live longer, with associated health difficulties. This means that there is an urgent need to focus research on ageing as well as end-of-life care. This study aimed to explore a specialist intellectual disability service for older people who are dying and how it related to their quality of life and to costs associated with care provided. Method: Data were collected for nine residents and 15 staff members of the specialist service. A single case study design with mixed methods including observations, interviews, standardised questionnaires and costs analysis was utilised. Results: The study found positive results regarding overall quality of life, although individuals had limited social networks. Placement fees paid by local health trusts and social services departments were slightly higher than the estimated cost of care reflecting good financial management by a small voluntary sector organisation. Conclusion: Whilst the philosophical arguments around “specialist” care persist, this service fills a gap in intellectual disability care provision. (Edited publisher abstract)