Commentary on: “Lost in the literature”. People with intellectual disabilities who identify as trans: a narrative review

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Tessa-May Zirnsak
Keyword(s):  
Intellectual Disabilities ◽  
Lived Experience ◽  
Queer Theory ◽  
Social Research ◽  
Content Type ◽  
Transgender Identity ◽  
Safe Spaces ◽  
Trans People ◽  
People With Intellectual Disabilities ◽  
To Come

Purpose This paper aims to discuss the barriers that people with intellectual disabilities face to come out as transgender in the context of a paucity of research with or about this group. Design/methodology/approach The commentary and brief overview of trans participation in literature on people with intellectual disabilities presented in this paper is informed by a Queer Theory and Critical disabilities Studies approach. Findings Researchers in this area are correct that there is insufficient literature that addressed the experiences of trans people with intellectual disabilities; however, for trans people with intellectual disabilities to be involved in research they must first be safe to self-identify and come out in their communities and services. Existing research suggests that people with intellectual disabilities may face additional barriers to self-identifying as LGTBQ, and that for those who have claimed a trans identity, it is not safe to come out. Social implications There is a need for researchers and professional and lived experience experts to be engaged in policy and social research with the aim of creating safe spaces and communities for people with intellectual disabilities to explore and affirm their gender. Originality/value There are no published papers that redirect focus from a paucity of research into the experiences of trans people with intellectual disabilities towards addressing why trans people with intellectual disabilities may choose not to come out in a context of hostility towards transgender identity in disabilities services.

A systematic review of adverse childhood experiences (ACEs) with people with intellectual disabilities: an unsafe gap in the literature

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Chloe Crompton ◽  
Bethany Duncan ◽  
Graham Simpson-Adkins
Keyword(s):  
Systematic Review ◽  
Intellectual Disabilities ◽  
Adverse Childhood Experiences ◽  
World Health ◽  
Inclusion Criteria ◽  
Childhood Experiences ◽  
Content Type ◽  
Adverse Childhood ◽  
People With Intellectual Disabilities ◽  
The Impact

Purpose This paper aims to systematically review the available evidence that explores adverse childhood experiences (ACEs) in people with intellectual disabilities (PwID). It is important to systematically review this literature as, to date, there is little known about the number of studies in this area, despite the World Health Organization declaring ACE prevention and support as a global public health priority. Design/methodology/approach Published studies were identified from electronic database searches. Key journals and reference lists were also hand searched. Findings Two studies met the inclusion criteria and the prevalence and frequency of ACEs experienced by participants of these studies analysed. Overall, due to the small number of studies meeting the inclusion criteria, it is difficult to establish any meaningful conclusions. Originality/value This appears to be the first systematic review to try and identify a research base looking at the prevalence of ACEs within a PwID population. Findings suggest that this is a highly neglected area of research, and the authors hope to have identified that further evidence is required to draw clearer conclusions about the impact of ACEs on PwID.

Commentary on “A family’s battle to understand ‘challenging behaviour’”

2017 ◽  
Vol 22 (2) ◽  
pp. 105-108
Author(s):  
Joann Kiernan
Keyword(s):  
Intellectual Disabilities ◽  
Design Methodology ◽  
Local Communities ◽  
Challenging Behaviour ◽  
Content Type ◽  
People With Intellectual Disabilities ◽  
Individuals With Intellectual Disabilities

Purpose The purpose of this paper is to provide a commentary on issues raised in the paper “A family’s battle to understand ‘challenging behaviour’”. Design/methodology/approach Drawing on literature associated with issues identified in the paper this commentary will reflect on the evidence associated with providing specialist support to people with intellectual disabilities and challenging behaviour. Findings Families, individuals and services are unable to access timely and appropriate specialist support for individuals with intellectual disabilities and challenging behaviour. As individuals go on to develop behaviours associated with a lack of intervention their levels of vulnerability increase due to their exclusion from services and their local communities. Originality/value The commentary provides a discussion on the issues faced by individuals and their families in relation to intellectual disabilities and challenging behaviour.

Enhancing clinical practice: reducing health inequalities – reflections on a clinical education and training partnership

2016 ◽  
Vol 10 (6) ◽  
pp. 342-348
Author(s):  
Karina Marshall-Tate
Keyword(s):  
Intellectual Disabilities ◽  
Health Inequalities ◽  
Positive Impact ◽  
Education And Training ◽  
Health Staff ◽  
Significant Group ◽  
Content Type ◽  
Knowledge And Skills ◽  
People With Intellectual Disabilities ◽  
And Training

Purpose The purpose of this paper is to outline a two-year project designed to reduce health inequalities and improve health outcomes of people with intellectual disabilities using health services in South London by raising awareness and increasing health staff confidence and capability. Design/methodology/approach The project was conducted in two stages. In stage 1, a mapping exercise was undertaken to establish existing intellectual disabilities education and training availability. In stage 2, a network of stakeholders was formed and education and training materials were developed and delivered. Findings A formal evaluation of the project is underway and this paper seeks to share information about the project. That said prima facie data appear to indicate that health staff who attended education and training events learned new knowledge and skills that they could implement in their practice, increasing confidence and capability. Research limitations/implications Health staff who attended the events appeared to have an interest in intellectual disabilities and wanted to increase their knowledge and skills base. This means that there is a significant group of health staff that the project was unable to reach or who may not know that they need to know about intellectual disabilities. The results of the project have not yet been formally analysed. Practical implications Work-based education and training events can have a positive impact on health staff capability and confidence, however, it would appear that only those who already have an interest in the field or recognise its value to their own practice attend such events. To truly capture all health staff intellectual disabilities needs to be visibly included in all health curricula. Originality/value This project has not focussed on one profession or one aspect of healthcare and has embraced the values of inter professional and inter agency learning; this has enabled health staff to learn from each other and think in a “joined up” way replicating the realities of providing healthcare to people with intellectual disabilities.

Football teams for people with intellectual disabilities living in the community: “it helps your self-esteem and that, don’t it?”

2017 ◽  
Vol 8 (4) ◽  
pp. 201-211 ◽  
Author(s):  
Rose White ◽  
Katherine Lister ◽  
Kristian Northend ◽  
Stephen Moore ◽  
Kelly Rayner
Keyword(s):  
Intellectual Disabilities ◽  
Personal Growth ◽  
Interpretative Phenomenological Analysis ◽  
Mental Health Problems ◽  
Well Being ◽  
Training Programme ◽  
Social Emotional ◽  
Content Type ◽  
People With Intellectual Disabilities ◽  
Football Training

Purpose People with intellectual disabilities (ID) can be vulnerable to developing mental health problems. It has been found that participating in regular exercise can help to improve emotional well-being, both in typically developing people and those with ID. The purpose of this paper is to investigate the experiences of community clients with ID who have engaged in a football training programme, and the perceived impacts on attitudes, mood and behaviour. Design/methodology/approach Interviews with seven patients from generic or forensic community ID services were conducted. The transcripts were analysed using interpretative phenomenological analysis. Findings Two master themes were identified from the interviews, “Striving” and “Togetherness”. Originality/value The most important factors related to taking part in the football programme were the social, emotional and personal growth associated with being part of a team and general enjoyment of being part of something. Although aspects of football knowledge and physical fitness were still evident, their impact seemed to be less significant. The experience of football was overwhelmingly positive.

A Queerly Ordinary Conclusion

2018 ◽  
Author(s):  
Andre Cavalcante
Keyword(s):  
Everyday Life ◽  
Lived Experience ◽  
Queer Theory ◽  
Media Culture ◽  
Everyday Lives ◽  
Trans People ◽  
Everyday World ◽  
The Ideal

Struggling for Ordinary exhibits how transgender participants are engaging with media culture to cope with, integrate into, and simultaneously disrupt the shared everyday world. In showing how queerness plays out on the ground, within the actual lives of trans people, the book aims to square queer theory with lived experience by documenting how queerness and ordinariness are not mutually exclusive. Rather, transgender individuals live very queer and very ordinary lives simultaneously. The conclusion theorizes this hybridity as the “queerly ordinary,” defining what the concept means and what’s at stake in its usage. It interrogates the “ideal queer subject,” a figure who embodies the apex of queer theoretical aspiration, and then shifts focus toward examining “lived queerness,” or how individuals mobilize and enact queerness in ways that work for them within the limitations and structures of their world. Finally, the conclusion elucidates the queerly ordinary as an expression of lived queerness, and explores how it can help us understand transgender experience with media and everyday life. Ultimately, the queerly ordinary is what the trans people in my study wanted to see represented in media, what they used technologies to achieve, and in the end, it is how they lived their everyday lives.

“When other people try to understand”: exploring the experiences of people with intellectual disabilities, who also have mental health problems

2020 ◽  
Vol 14 (3) ◽  
pp. 91-101
Author(s):  
Sasha Martine Mattock ◽  
Kieron Beard ◽  
Amy Baddeley
Keyword(s):  
Mental Health ◽  
Mental Health Services ◽  
Focus Group ◽  
Health Services ◽  
Intellectual Disabilities ◽  
Mental Health Problems ◽  
Health Problems ◽  
Content Type ◽  
The People ◽  
People With Intellectual Disabilities

Purpose Recent guidelines from the National Institute of Health and Care Excellence highlight that service users (SUs) with intellectual disabilities and co-occurring mental health problems rarely get the opportunity to share their experiences of mental health services. Over the past 20 years, policy documents have stated that these individuals (SUs) must be included in decisions about their care. Research suggests that often this is not the case. Therefore, this paper aims to create a space for SUs to share their experiences of mental health services, and what they found helpful. Design/methodology/approach A focus group was held with five SUs, two psychologists and two researchers. The audio recording of the discussion was transcribed and analysed using thematic analysis. Findings Three main themes were identified, namely, “relationships with others”, “inclusion and communication” and “challenges”. This focus group highlighted that although some SUs felt supported, they reported having little control in their lives and wanted to be listened to. Research limitations/implications Including a SU in the planning and facilitation of the focus group would have made this research more inclusive. Practical implications The implications of this research suggest that by listening to and involving SUs and developing more person-centred services, recovery rates may increase as the services provided would be more targeted. Originality/value Very little research has previously been conducted to explore SUs’ experiences. This paper highlights the value of being heard and the knowledge that is often lost if the authors do not take the time to listen to the people for whom a service is designed.

scholarly journals Exploring coping strategies of carers looking after people with intellectual disabilities and dementia

2014 ◽  
Vol 8 (5) ◽  
pp. 292-301 ◽  
Author(s):  
Bhathika D. Perera ◽  
Penny J. Standen
Keyword(s):  
Focus Groups ◽  
Intellectual Disabilities ◽  
Coping Strategies ◽  
Qualitative Methodology ◽  
Vital Role ◽  
Family Carers ◽  
Narrative Strategy ◽  
Content Type ◽  
Face To Face ◽  
People With Intellectual Disabilities

Purpose – Carers play a vital role in looking after people with intellectual disabilities (ID). Caring role can be stressful and challenging in nature. Carers use various coping strategies to deal with stressors. The purpose of this paper is to explore coping strategies of carers looking after people with ID and dementia. Design/methodology/approach – Qualitative methodology was used to explore coping strategies. Focus groups and face-to-face interviews were carried out. These interviews were transcribed and analysed using thematic analysis. Findings – Nine interviews with carers (six paid carers and three family carers) and two focus groups with nursing staff looking after people with ID were carried out. Three key themes of “Narrative”, “Strategy toolbox” and “Compartmentalisation” emerged from analysis. Narrative and strategy took box were further subthemed. Carers had narratives about them and the person they look after. These “narratives” helped them to deal with day to day stressors. They also carried a “strategy toolbox”, which they used when they were in stressful situations. Compartmentalisation helped them to separate their personal life from work life as a carer. Originality/value – Understanding carers’ coping strategies is important when planning services to help carers who play an important role in our society. Professionals can support carers to understand and improve their existing coping skills and help them to thrive in their role as carers.

Poor adherence to the mental capacity act and premature death

2014 ◽  
Vol 16 (6) ◽  
pp. 367-376 ◽  
Author(s):  
P. Heslop ◽  
P. Blair ◽  
P. Fleming ◽  
M. Hoghton ◽  
A. Marriott ◽  
...  
Keyword(s):  
Decision Making ◽  
Intellectual Disabilities ◽  
Mental Capacity ◽  
Content Type ◽  
Premature Deaths ◽  
Sequence Of Events ◽  
Resuscitation Guidelines ◽  
Decision Making Processes ◽  
People With Intellectual Disabilities ◽  
Mental Capacity Act

Purpose – The purpose of this paper is to report the findings of the Confidential Inquiry into premature deaths of people with intellectual disabilities (CIPOLD) in relation to the Mental Capacity Act (England and Wales) (MCA) 2005. Design/methodology/approach – CIPOLD reviewed the deaths of all known people with intellectual disabilities (ID) aged four years and over who had lived in the study area and died between 2010 and 2012. Findings – The deaths of 234 people with ID aged 16 years and over were reviewed. There were two key issues regarding how the MCA was related to premature deaths of people with ID. The first was of the lack of adherence to aspects of the Act, particularly regarding assessments of capacity and best interests decision-making processes. The second was a lack of understanding of specific aspects of the Act itself, particularly the definition of “serious medical treatment” and in relation to Do Not Attempt Cardiopulmonary Resuscitation guidelines. Research limitations/implications – CIPOLD did not set out to specifically evaluate adherence to the MCA. It may be that there were other aspects relating to the MCA that were of note, but were not directly related to the deaths of individuals. Practical implications – Addressing the findings of the Confidential Inquiry in relation to the understanding of, and adherence to, the MCA requires action at national, local and individual levels. Safeguarding is everyone's responsibility, and in challenging decision-making processes that are not aligned with the MCA, the authors are just as effectively protecting people with ID as are when the authors report wilful neglect or abuse. Originality/value – CIPOLD undertook a retrospective, detailed investigation into the sequence of events leading to the deaths of people with ID. To the authors’ knowledge, this is the first time that such research has associated a lack of adherence to the MCA to premature deaths within a safeguarding framework.

It can still happen here: systemic risk factors that may contribute to the continued abuse of people with intellectual disabilities

2015 ◽  
Vol 20 (3) ◽  
pp. 134-146 ◽  
Author(s):  
Dave Marsland ◽  
Peter Oakes ◽  
Naomi Bright
Keyword(s):  
Intellectual Disabilities ◽  
Systemic Risk ◽  
Design Methodology ◽  
Critical Reflection ◽  
Research Evidence ◽  
Evidence Based ◽  
Review Of Literature ◽  
Content Type ◽  
People With Intellectual Disabilities ◽  
Future Harm

Purpose – The purpose of this paper is to reflect on the response to the scandal of abuse in services for people with intellectual disabilities in the light of research evidence and analysis. Design/methodology/approach – Critical reflection and review of literature. In particular, recent research into possible indicators that a service is at risk of becoming abusive is used to test the hypotheses and implied solutions that are currently being adopted. Findings – That some of the responses to recent scandals are necessary but not sufficient to prevent future harm. Furthermore, some of the proposed solutions may actually increase the likelihood of further abuse. Prevention of abuse requires a broader and more evidence-based response. Originality/value – The synthesis of research and analysis presented here has not been presented previously in the published literature.

Commentary on “An audit of an Intensive Interaction service”

2015 ◽  
Vol 20 (3) ◽  
pp. 117-120
Author(s):  
Peter Baker
Keyword(s):  
At Risk ◽  
Intellectual Disabilities ◽  
Design Methodology ◽  
Service Innovation ◽  
Multiple Disabilities ◽  
Research Experience ◽  
Content Type ◽  
Service Models ◽  
People With Intellectual Disabilities

Purpose – The purpose of this paper is to provide a commentary on “An audit of an Intensive Interaction service”. Design/methodology/approach – Drawing on the literature regarding other related person-centred approaches and clinical and research experience, an argument is made that people with profound intellectual and multiple disabilities are particularly at risk when service innovation does not account for their unique needs. Findings – Practice and service models need to specifically account for the needs of people with profound intellectual and multiple disabilities. Originality/value – The commentary draws attention to the importance of implementation and seeks to draw lessons from well established, service wide approaches for people with intellectual disabilities.

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