scholarly journals Priority concerns for people with intellectual and developmental disabilities during the COVID-19 pandemic

BJPsych Open ◽  
2020 ◽  
Vol 6 (6) ◽  
Author(s):  
Sam Tromans ◽  
Michael Kinney ◽  
Verity Chester ◽  
Regi Alexander ◽  
Ashok Roy ◽  
...  
Keyword(s):  
Intellectual Disabilities ◽  
Consensus Statement ◽  
Point Of View ◽  
Intellectual And Developmental Disabilities ◽  
Family Carers ◽  
Vulnerable Group ◽  
Consensus Statements ◽  
Expert Clinician ◽  
Strong Consensus ◽  
People With Intellectual Disabilities

Background The approach taken to support individuals during the coronavirus disease 2019 (COVID-19) pandemic needs to take into account the requirements of people with intellectual disabilities and/or autism, who represent a major vulnerable group, with higher rates of co-occurring health conditions and a greater risk of dying prematurely. To date, little evidence on COVID-related concerns have been produced and no report has provided structured feedback from the point of view of people with intellectual disabilities and/or autism or of their family/carers. Aims To provide systemised evidence-based information of the priority concerns for people with intellectual disabilities and/or autism regarding the COVID-19 pandemic. Method Senior representatives of major UK-based professional and service-user representative organisations with a stake in the care of people with intellectual disabilities and/or autism were contacted to provide a list of concerns across three domains: ‘mental health and challenging behaviour’, ‘physical health and epilepsy’ and ‘social circumstances and support’. The feedback was developed into statements on frequently reported priorities. These statements were then rated independently by expert clinicians. A video-conference meeting to reconcile outliers and to generate a consensus statement list was held. Results Thirty-two organisations were contacted, of which 26 (81%) replied. From the respondent's data, 30 draft consensus statements were generated. Following expert clinician review, there was initially strong consensus for seven statements (23%), increasing to 27 statements (90%) following video conferencing. Conclusions These recommendations highlight the expectations of people with intellectual disabilities and/or autism in the current pandemic. This could support policymakers and professionals’ deliver and evidence person-centred care.

Views of family carers to the future accommodation and support needs of their relatives with intellectual disabilities

2006 ◽  
Vol 23 (4) ◽  
pp. 140-144 ◽  
Author(s):  
Roy McConkey ◽  
Jayne McConaghie ◽  
Owen Barr ◽  
Paul Roberts
Keyword(s):  
Intellectual Disabilities ◽  
Living Arrangements ◽  
Service Planning ◽  
Support Needs ◽  
Family Carers ◽  
Individual Interviews ◽  
Supported Accommodation ◽  
The Family ◽  
People With Intellectual Disabilities

AbstractObjectives: The demand for places in supported accommodation is likely to rise due to the increasing longevity of people with intellectual disabilities and as their parents become unavailable or unable to care for them. However few attempts have been made to ascertain carer's views on alternative accommodation.Method: Four studies were undertaken in Northern Ireland to ascertain carer's views using three different methods. In all, 387 carers participated with the response being greatest for individual interviews conducted in the family home and least for self-completed questionnaires and attendance at group meetings.Results: The majority of carers envisaged the person continuing to be cared for within the family. The most commonly chosen out-of-home provision was in residential or nursing homes, living with support in a house of their own and in homes for small groups of people. Few carers chose living with another family. However only small numbers of carers envisaged alternative provision being needed in the next two years and few had made any plans for alternative living arrangements.Conclusions: The implications for service planning are noted, primarily the need for individual reviews of future needs through person-centred planning; improved information to carers about various residential options and their differential benefits, along with more services aimed at improving the quality of life of people living with family carers. These need to be underpinned by a commitment of statutory agencies to partnership working with family carers. The implications for mental health services are noted.

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.

scholarly journals Family Voices: Life for Family Carers of People with Intellectual Disabilities in Ireland

2012 ◽  
Vol 26 (2) ◽  
pp. 119-132 ◽  
Author(s):  
Darren D. Chadwick ◽  
Hasheem Mannan ◽  
Edurne Garcia Iriarte ◽  
Roy McConkey ◽  
Patricia O'Brien ◽  
...  
Keyword(s):  
Intellectual Disabilities ◽  
Family Carers ◽  
People With Intellectual Disabilities

scholarly journals Internet use for family carers of people with intellectual disabilities: A literature review and thematic synthesis

2019 ◽  
Vol 23 (3) ◽  
pp. 446-468 ◽  
Author(s):  
Sue Caton ◽  
Emma-Reetta Koivunen ◽  
Callum Allison
Keyword(s):  
Intellectual Disabilities ◽  
Emotional Support ◽  
The Internet ◽  
Family Carer ◽  
Informational Support ◽  
Online Forums ◽  
Family Carers ◽  
Thematic Synthesis ◽  
People With Intellectual Disabilities ◽  
Use Of The Internet

Being a family carer can be rewarding but can also lead to mental and physical exhaustion as well as feelings of social exclusion and isolation. Research has shown that the use of the Internet and online forums can provide an immediate place to find information and reassurance and that forum use can be an empathetic place to share experiences and seek emotional support. This article details a systematic literature search of research on carers of people with intellectual disabilities and/or autism using the Internet. A thematic synthesis of the resulting papers identified that online forums give carers a sense of agency by providing a place to go for informational support that may not be elsewhere. Carers also enjoyed the safe community of solidarity and emotional support that online forums provide. An important finding is the lack of published papers in this area with the inclusion of just eight papers.

Lifetime Victimization and Poly-Victimization in a Sample of Adults With Intellectual Disabilities

2020 ◽  
pp. 088626052093637
Author(s):  
Marta Codina ◽  
Noemí Pereda ◽  
Georgina Guilera
Keyword(s):  
Intellectual Disabilities ◽  
Vulnerable Group ◽  
Previous Evidence ◽  
Intervention Measures ◽  
People With Intellectual Disabilities ◽  
Adults With Intellectual Disabilities ◽  
Forms Of Violence ◽  
Victimization Questionnaire ◽  
Shed Light ◽  
Special Protection

People with intellectual disabilities appear to be more vulnerable to victimization. However, few studies have assessed victimization in these groups and those that do exist are highly heterogeneous and tend to focus only on specific forms of violence. This study attempts to shed light on the phenomenon of victimization among adults with intellectual disabilities by assessing victimization and poly-victimization throughout their life course. The sample consisted of 260 adults (154 men and 106 women) with an intellectual disability diagnosis, recruited from the Catalan Federation for People with Intellectual Disabilities (DINCAT) in Spain. They ranged in age from 20 to 71 years ( M = 41.69, SD = 12.05). Victimization experiences were assessed by means of an adaptation of the retrospective version of the Juvenile Victimization Questionnaire (JVQ). The results showed that 96.9% of the participants had suffered some kind of victimization throughout their lives. With respect to the types of victimization, the most frequent were common victimization (87.7%), witnessing and indirect victimization (67.3%), victimization by caregivers (59.2%), sexual victimization (35%), and electronic victimization (23.5%). Women and early adults tended to experience higher rates of victimization. The poly-victimized group experienced 13 or more incidents of victimization throughout their lives. This study highlights the elevated rates of lifetime victimization among people with intellectual disabilities. It adds to previous evidence that special protection programs are required to address this issue and emphasizes the need for prevention and intervention measures in this particularly vulnerable group.

Reducing the barriers to relationships and sexuality education for persons with intellectual disabilities

2012 ◽  
Vol 16 (1) ◽  
pp. 29-43 ◽  
Author(s):  
Attracta Lafferty ◽  
Roy McConkey ◽  
Audrey Simpson
Keyword(s):  
Intellectual Disabilities ◽  
Sexuality Education ◽  
Professional Staff ◽  
Family Carers ◽  
Individual Interviews ◽  
Stakeholder Groups ◽  
Management Procedures ◽  
People With Intellectual Disabilities ◽  
The Impact ◽  
Vulnerable Persons

Opportunities for persons with intellectual disabilities to participate in relationships and sexuality education (RSE) are often constrained by the attitudes and perceptions of family carers, frontline support workers and professional staff. In order to understand how the barriers might be reduced, a study was undertaken in Northern Ireland with samples drawn from these three stakeholder groups, involving nearly 100 persons and using group and individual interviews. Although there was agreement on the need for RSE, four barriers were commonly reported: the need to protect vulnerable persons; the lack of training; the scarcity of educational resources; and cultural prohibitions. The impact of these barriers could be lessened through partnership working across these groups involving the provision of training and information about RSE, the development of risk management procedures and the empowerment of people with intellectual disabilities.

The law

2018 ◽  
pp. 477-524
Author(s):  
Owen Barr ◽  
Bob Gates
Keyword(s):  
Intellectual Disabilities ◽  
Vulnerable Group ◽  
Republic Of Ireland ◽  
People With Intellectual Disabilities ◽  
The Law ◽  
The Republic ◽  
The Uk

All citizens are required to act within the law and simultaneously are protected by the law. However, as a potentially vulnerable group, people with intellectual disabilities are sometimes identified specifically in law for their protection. More general legislation is sometimes highly relevant to people with intellectual disabilities and can impinge on the practice of the nurse for people with intellectual disabilities. This chapter presents a thorough overview of a range of primary legislation relevant for students and nurses for people with intellectual disabilities. Where appropriate, relevant legislation is outlined for each of the jurisdictions of the UK and the Republic of Ireland. Where a student finds an omission for the jurisdiction in which they are working, they will find helpful resources and may also find it useful to append their own notes to the sections within the chapter; the layout of the book has been designed for students to make relevant notes on.

Family carers of people with intellectual disabilities in Ireland: Changes over 10 years

2019 ◽  
pp. 174462951986631 ◽  
Author(s):  
Caraíosa Kelly ◽  
Roy McConkey ◽  
Sarah Craig
Keyword(s):  
General Population ◽  
Intellectual Disabilities ◽  
Community Health ◽  
Family Care ◽  
Percentage Increase ◽  
Marked Variation ◽  
Family Carers ◽  
Proportional Increase ◽  
People With Intellectual Disabilities ◽  
Health Organization

Data were obtained on nearly 20,000 Irish children and adults living in various family care arrangements in 2007, 2012, and 2017. Over 10 years, the percentage increase in adult persons living with family carers was three times higher than the rise in the general population, with people aged 50 years and over having the highest proportional increase. Also a greater number of persons aged 40–49 group continued to live with both parents in 2017 (47%) compared to 2007 (33%). However, there was marked variation across the nine Community Health Organization areas in the proportions of adults living with family carers (from 49% to 62%). In the coming decades, increased provision will be required in both the quantum and type of supports provided to families so as to sustain their caring role but ensuring equity of provision nationally will be a major challenge.

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