scholarly journals Mingled bodies and voices: Maternal reflections on caregiver expertise and intellectual disability

2021 ◽  
pp. 174462952110093
Author(s):  
Laura MacGregor
Keyword(s):  
Intellectual Disability ◽  
Young Adult ◽  
Intellectual Disabilities ◽  
Family Caregivers ◽  
The Body ◽  
Medical Professionals ◽  
Optimal Care ◽  
Medical Issues ◽  
Medical Paradigm ◽  
People With Intellectual Disabilities

The risk of viral infection during the COVID-19 pandemic has caused many hospitals to prohibit all patient visitors, including family caregivers for people with intellectual disabilities. Drawing on a postmodern, intersubjective view of the body, as well as my experience as the mother of a young adult with profound disabilities, I argue that caregiver knowledge while unconventional within the medical paradigm must be viewed as essential expertise. People with profound intellectual disabilities often have concurrent, complex medical issues that are complicated by their inability to self-advocate. Optimal care rests upon the ongoing presence and expertise of their primary caregiver. Medical professionals risk patient care by excluding the essential expertise of family caregivers at any time, and specifically during COVID-19.

Determining the informational needs of family caregivers of people with intellectual disability who require palliative care: A qualitative study

2020 ◽  
pp. 1-10
Author(s):  
Laurie McKibben ◽  
Kevin Brazil ◽  
Dorry McLaughlin ◽  
Peter Hudson
Keyword(s):  
Palliative Care ◽  
Intellectual Disability ◽  
Intellectual Disabilities ◽  
Family Caregivers ◽  
Family Caregiving ◽  
Information Needs ◽  
Logic Model ◽  
Informational Needs ◽  
Health And Social Care ◽  
People With Intellectual Disabilities

Abstract Objectives People with intellectual disabilities are living longer, and many require palliative care. There is a lack of evidence regarding information needs which may exist for their family caregivers. This study aimed to determine the informational needs of family caregivers of people with intellectual disabilities who require palliative care. Methods A qualitative, exploratory design was underpinned by the Transactional Model of Stress and Coping and the Transformative Paradigm. The study involved five Health and Social Care (HSC) Trusts and two Hospices in one region of the United Kingdom. Family caregivers (n = 10) participated in individual interviews. HSC professionals’ (n = 28) perceptions of informational needs were explored within focus groups (n = 6). Results Family caregivers reported information needs chiefly concerning the disease, financial entitlements, and practical support which could change over the disease trajectory. Findings evidence the expertise of long-term family caregivers, prior to the end of life. Palliative care and intellectual disability teams acknowledged their role to work in partnership and facilitate access to information. Recommendations were mapped onto a co-designed logic model. Significance of results New insights into the specific informational needs of this family caregiving population. A co-designed logic model presents these needs and how they may be addressed. Central co-ordinators have been advocated for these caregivers. This model could have international applicability for similar family carers, supporting people with other disabilities or cognitive impairment, and should be further explored.

Coping With Criticism and Praise

2015 ◽  
Vol 120 (3) ◽  
pp. 258-268 ◽  
Author(s):  
Lynn Esdale ◽  
Andrew Jahoda ◽  
Carol Pert
Keyword(s):  
Intellectual Disability ◽  
Positive Affect ◽  
Intellectual Disabilities ◽  
The Self ◽  
Self Perceptions ◽  
Stigma And Discrimination ◽  
People With Intellectual Disabilities ◽  
Study Participants

AbstractThrough experiencing stigma and discrimination, people with intellectual disability may become more sensitive to criticism from others and be less likely to believe praise. This study compared how people with and without intellectual disability viewed praise and criticism, using a vignette task developed for the study. Participants were asked to imagine someone saying something praiseworthy or critical and were then asked about their emotions, beliefs, and thoughts. People with intellectual disability were more likely to believe and be distressed by criticism. Contrary to predictions, this group were also more likely to believe praise and experience positive affect. The results suggest that the self-perceptions of people with intellectual disabilities is more dynamic and reliant on the views of others.

Huronia's Double Bind: How Institutionalisation Bears Out on the Body

Somatechnics ◽  
2021 ◽  
Vol 11 (1) ◽  
pp. 92-111
Author(s):  
Jen Rinaldi ◽  
Kate Rossiter
Keyword(s):  
Intellectual Disabilities ◽  
Lived Experiences ◽  
Institutional Care ◽  
The Body ◽  
Interview Data ◽  
Double Bind ◽  
Total Institution ◽  
People With Intellectual Disabilities ◽  
Gendered Bodies ◽  
The Impact

Frequently missing from histories of forced institutionalisation are close readings of the enduring impact on survivors' corporeality. In this article the authors analyse interview data featuring people who survived the Huronia Regional Centre: a total institution designed to warehouse people with intellectual disabilities that operated in Canada from 1876 to 2009. These interviews reveal the impact of institutional technologies on the bodies of the institutionalised, and how institutional survivors resisted those technologies. Institutional rituals meant to organise and cleanse residents, resulted in the reification of institutional subjects as inescapably contaminated. Drawing from Mary Douglas's theory of dirt and Julia Kristeva's interpretation of dirt as abjection, the authors engage with interview data on daily institutional care routines, particularly dressing, eating, showering, and the administration of medication, to show how these rituals produced for the institutionalised subject meanings around gender and disability as markers of defilement. The authors argue that the kinds of deeply oppressive and often violent rituals central to lived experiences of institutionalisation are grounded in the assumption that disabled gendered bodies are already-abject, hence the institutional demand for the institutionalised to be brought under control.

Intellectual Disability, Identity, and the Internet

2013 ◽  
pp. 198-223
Author(s):  
Darren D. Chadwick ◽  
Chris Fullwood ◽  
Caroline J. Wesson
Keyword(s):  
Intellectual Disability ◽  
Intellectual Disabilities ◽  
Internet Use ◽  
Computer Mediated Communication ◽  
The Internet ◽  
Mediated Communication ◽  
Disability Identity ◽  
Computer Mediated ◽  
Online Behaviour ◽  
People With Intellectual Disabilities

This chapter provides insight into the nature of online engagement by people with intellectual disabilities, the extent and quality of this engagement in terms of the access that people have, and how people with intellectual disabilities present themselves in the online world. The authors of this chapter provide an overview of the extant literature on intellectual disability, identity, and the Internet. The chapter begins by outlining issues around Internet use and access by people with intellectual disabilities, including potential barriers. It then moves on to address online behaviour and the potential benefits of Internet use for people with intellectual disabilities. The chief focus of the chapter follows, describing the manner in which computer mediated communication affects how people with intellectual disabilities present themselves in the online world as well as considering the role that family members and supporters play in the development and management of people’s online identities. Finally, the chapter introduces future directions for research into intellectual disability, identity, and the Internet.

Intellectual Disability, Identity, and the Internet

2013 ◽  
pp. 229-254 ◽  
Author(s):  
Darren D. Chadwick ◽  
Chris Fullwood ◽  
Caroline J. Wesson
Keyword(s):  
Intellectual Disability ◽  
Intellectual Disabilities ◽  
Internet Use ◽  
Computer Mediated Communication ◽  
The Internet ◽  
Mediated Communication ◽  
Disability Identity ◽  
Computer Mediated ◽  
Online Behaviour ◽  
People With Intellectual Disabilities

This chapter provides insight into the nature of online engagement by people with intellectual disabilities, the extent and quality of this engagement in terms of the access that people have, and how people with intellectual disabilities present themselves in the online world. The authors of this chapter provide an overview of the extant literature on intellectual disability, identity, and the Internet. The chapter begins by outlining issues around Internet use and access by people with intellectual disabilities, including potential barriers. It then moves on to address online behaviour and the potential benefits of Internet use for people with intellectual disabilities. The chief focus of the chapter follows, describing the manner in which computer mediated communication affects how people with intellectual disabilities present themselves in the online world as well as considering the role that family members and supporters play in the development and management of people’s online identities. Finally, the chapter introduces future directions for research into intellectual disability, identity, and the Internet.

scholarly journals Revisiting Photovoice: Perceptions of Dementia Among Researchers With Intellectual Disability

2020 ◽  
Vol 30 (7) ◽  
pp. 1019-1032 ◽  
Author(s):  
Karen Watchman ◽  
Kate Mattheys ◽  
Andrew Doyle ◽  
Louise Boustead ◽  
Orlando Rincones
Keyword(s):  
Social Change ◽  
Intellectual Disability ◽  
Intellectual Disabilities ◽  
Research Team ◽  
Critical Dialogue ◽  
Marginalized Groups ◽  
Improved Outcomes ◽  
People With Intellectual Disabilities ◽  
Photovoice Methodology ◽  
Global Evidence

There is limited global evidence exploring perceptions of dementia among people with intellectual disabilities. This article presents findings from the first known study where an inclusive research team, including members with intellectual disability, used photovoice methodology to visually represent views of people with intellectual disabilities and dementia. Drawing on Freire’s empowerment pedagogy, the study aims were consistent with global photovoice aims: enabling people to visually record critical dialogue about dementia through photography and social change. We investigated the benefits and challenges of photovoice methodology with this population and sought to identify perspectives of dementia from people with intellectual disabilities. Data collected identified issues such as peers “disappearing” and the importance of maintaining friendship as dementia progressed. Although reaching policymakers is a key aim of photovoice, this may not always be achievable, suggesting that revisiting Freire’s original methodological aims may lead to improved outcomes in co-produced research with marginalized groups.

scholarly journals Are we training psychiatrists to develop skills in intellectual disability psychiatry? Current European context and future directions

2020 ◽  
Vol 63 (1) ◽  
Author(s):  
Marisa Casanova Dias ◽  
Bhathika Perera ◽  
Florian Riese ◽  
Livia De Picker ◽  
Mariana Pinto da Costa ◽  
...  
Keyword(s):  
Mental Health ◽  
Intellectual Disability ◽  
Mental Health Services ◽  
Health Services ◽  
Intellectual Disabilities ◽  
Psychiatric Disorders ◽  
Psychiatric Training ◽  
Future Directions ◽  
Education And Health ◽  
People With Intellectual Disabilities

Abstract The majority of people with intellectual disabilities (ID) and psychiatric disorders access mainstream mental health services across Europe. However, only 56% of countries provide postgraduate psychiatric training in ID according to a survey across 42 European countries. We explore the challenges of ID training and make recommendations for education and health policymakers.

scholarly journals Aspirations held by young adults with intellectual disabilities and their mothers

2020 ◽  
Vol 29 (2) ◽  
pp. 107-116
Author(s):  
Mary McMahon ◽  
Karen Moni ◽  
Monica Cuskelly ◽  
Jan Lloyd ◽  
Anne Jobling
Keyword(s):  
Young Adults ◽  
Intellectual Disability ◽  
Young People ◽  
Intellectual Disabilities ◽  
Small Scale ◽  
Structured Interviews ◽  
Future Aspirations ◽  
People With Intellectual Disabilities ◽  
Adults With Intellectual Disabilities ◽  
Nuanced Understanding

This study reports on Australian small-scale exploratory descriptive research into how young people with intellectual disability and their families construct their futures. The aims of this research were to (a) better understand the future aspirations held by young adults with intellectual disability and their parents, (b) identify enablers and barriers to the achievement of these aspirations, and (c) provide insights for career practitioners who support young people with intellectual disability and their parents to achieve their personal and career goals. Participants were four young people with intellectual disabilities aged between 18 and 30 years and their mothers. Data were collected through semi-structured interviews and analysed thematically. Results provide a nuanced understanding of the issues facing young people with intellectual disabilities and their families in constructing their futures. Suggestions are offered that can inform career development practice and policy.

Services Available from Providers in the Disability Field to Older Adults with Intellectual Disabilities

1997 ◽  
Vol 3 (2) ◽  
pp. 65-70
Author(s):  
Laurie Buys
Keyword(s):  
Older Adults ◽  
Intellectual Disability ◽  
Intellectual Disabilities ◽  
Older Adult ◽  
Independent Living ◽  
Support Programs ◽  
Community Based ◽  
The Past ◽  
People With Intellectual Disabilities ◽  
Adults With Intellectual Disabilities

As most older adults with intellectual disabilities reside in community based accommodation, the availability of support programs and services becomes important to the maintenance of independent living. Thirty nine community based organisations in Brisbane, Australia that assist people with intellectual disabilities were surveyed regarding the types of programs offered to older adults with intellectual disabilities. The results showed that 75% of the organisations had provided assistance to an older adult with an intellectual disability in the past 12 months. However, none of the agencies surveyed reported that they provided specialised programs or services to older adults with intellectual disabilities.

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