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Journal article

Participatory data analysis alongside co-researchers who have Down Syndrome

Author:
STEVENSON Miriam
Journal article citation:
Journal of Applied Research in Intellectual Disabilities, 27(1), 2013, pp.23-33.
Publisher:
Wiley-Blackwell

There are not many research projects which include people with an intellectual disability in data analysis. This paper tells the story of how a small group of people with Down syndrome called co-researchers, joined in analysing data from their peers in a research project. The ‘Voices for Change’ study took place between 2007 and 2011 and the project sought to assist the young people in achieving their life goals and greater social connection using a ‘circles of support’ model. A university based researcher analysed a portion of the data set using thematic networks with the participation of co-researchers in iterative cycles of reflexivity. The participation of the co-researchers is demonstrated and a global theme, deduced from the collaborative analysis, is described. Authentic participation of co-researchers in the data analysis stage of the research process is an example of ‘inclusive research’ and assures adherence to the principles of EDR in informing the theory and practice of social inclusion for young adults with an intellectual disability. (Edited publisher abstract)

Journal article

Co-researching with people who have intellectual disabilities: insights from a national survey

Authors:
O'BRIEN Patricia, McCONKEY Roy, GARCIA-IRIARTE Edurne
Journal article citation:
Journal of Applied Research in Intellectual Disabilities, 27(1), 2013, pp.65-75.
Publisher:
Wiley-Blackwell

In undertaking a national study exploring what life was like in Ireland for people with intellectual disabilities, a community of practice was developed involving a core group of co-researchers: five people with intellectual disabilities, four university researchers and three service support staff. An additional cadre of 15 co-researchers with intellectual disabilities was recruited to undertake data gathering and analysis with 23 focus groups involving 168 participants. The research experience was documented through oral feedback, progress reports, minutes and a project review. The key learning is documented arising from the setting up of an inclusive advisory group and implementation of each of six research steps. The study demonstrates feasibility and the added value of university co-researchers recruiting and developing skills together with co-researchers with intellectual disabilities. Topics for further research and development are identified. (Edited publisher abstract)

Journal article

Conceptualizing inclusive research with people with intellectual disability

Authors:
BIGBY Christine, FRAWLEY Patsie, RAMCHARAN Paul
Journal article citation:
Journal of Applied Research in Intellectual Disabilities, 27(1), 2013, pp.3-12.
Publisher:
Wiley-Blackwell

A comprehensive review of the peer reviewed literature and key texts was undertaken to more clearly conceptualize inclusive research with people with intellectual disability and identify the issues associated with ways of approaching it. Three approaches to inclusive research were identified: advisory, leading and controlling, and collaborative group. Using the literature and the authors' own experience, each approach is illustrated and discussed. A clearer conceptual framework is developed to guide researchers and administrators as they consider inclusive research and its feasibility to particular research questions. A strong self-advocacy movement is identified as one of the conditions necessary for inclusive research to flourish. (Edited publisher abstract)

Journal article

Exploring the ethical underpinnings of self-advocacy support for intellectually disabled adults

Authors:
CHAPMAN Rohhss, TILLY Liz
Journal article citation:
Ethics and Social Welfare, 7(3), 2013, pp.257-271.
Publisher:
Taylor and Francis
Place of publication:
Abingdon

Self-advocacy organisations support people in a wide range of political activities, alongside providing key social networks. The emergence of formalised self-advocacy for intellectually disabled people marked an important cultural shift. These groups soon became associated with the pursuit of social change and the attainment of rights. The role of the self-advocacy support worker, working together with self-advocates, has been pivotal. However, studies have shown there has been concern over the relationship between self-advocates and those who advise or support them. Both parties are aware of the potential tensions of supporters teaching people skills to take control, to manage their workers, whilst, perhaps inadvertently, assuming a powerful position in the relationship. This interesting paradox hints at ethical complexities inherent in the role. A key challenge facing these support workers is how they can support their employers to run successful organisations, without ‘taking over’. Using material from both Chapman and Tilley's research of self-advocacy organisations in the UK, this article problematises some key ethical issues within the role. (Edited publisher abstract)

Journal article

The Social Information Processing Model as a framework for explaining frequent aggression in adults with mild to moderate intellectual disabilities: a systematic review of the evidence

Authors:
LARKIN Peter, JAHODA Andrew, MacMAHON Ken
Journal article citation:
Journal of Applied Research in Intellectual Disabilities, 26(5), 2013, pp.447-465.
Publisher:
Wiley-Blackwell

There is an established evidence base con-cerning the use of anger management interventions with violent offenders who have intellectual disabilities. However, there has been limited research investigating the role of social cognitive factors underpinning problems of aggression. Psychosocial sources of agg-ression in the non-disabled population are generally discussed using Social Information Processing (SIP) models. A systematic review of the available evidence was carried out to establish whether SIP offers a useful explanatory model for understanding the contribution of social cognitive factors to problems of aggression presented by people with intellectual disabilities. Whilst research relating to the SIP model remains sparse for this population, there was evidence for different patterns of processing between aggressive and non-aggressive individuals. Group diff-erences included interpretation of emotional cues, inter-personal attributions and beliefs about the outcomes of aggressive behaviour. The future direction of SIP research with people who have intellectual disabilities is discussed, along with the possibility of using this framework to help build on current initiatives to develop individually tailored interventions to work at a cognitive level with those who are aggressive and offend. (Edited publisher abstract)

Journal article

How effective is the cognitive interview when used with adults with intellectual disabilities specifically with conversation recall?

Authors:
CLARKE Jason, PRESCOTT Katherine, MILNE Rebecca
Journal article citation:
Journal of Applied Research in Intellectual Disabilities, 26(6), 2013, pp.546-556.
Publisher:
Wiley-Blackwell

This study compared the memory recall of twenty-one adults with a mild intellectual disability (IQ 70–50) and twenty-one adults from the general population to assess the benefits of using a cognitive interview with adults with learning disabilities. Participants viewed a film of a staged distraction theft and were interviewed using either the cognitive interview or the structured interview. The cognitive interview, when compared to the structured interview, enhanced the correct recall of person, action and conversation detail for both participant types, without increasing the number of incorrect or confabulated details reported. The ID group reported significantly less correct information than the GP regardless of the interview used. The findings suggest that the cognitive interview can enable adults with intellectual disability to provide a fuller picture about an experienced event. Implications of this research are discussed. (Edited publisher abstract)

Journal article

‘Everybody just thinks I'm weird’: a qualitative exploration of the psychosocial experiences of adolescents with Tourette syndrome

Authors:
WADMAN R., TISCHLER Victoria, JACKSON G.M.
Journal article citation:
Child: Care, Health and Development, 39(6), 2013, pp.880-886.
Publisher:
Wiley-Blackwell

Background: Research suggests Tourette syndrome (TS) can have a negative impact on quality of life. To date, little research has examined the perspectives of young people with this condition in depth. Methods: Six 14- to 16-year-olds with TS took part in semi-structured interviews to explore the perceived impact of this condition on self and on relationships with others. The transcripts were analysed using interpretative phenomenological analysis. Results: The young people felt that TS was a constant presence in their lives, but one they have learnt to cope with well. Most had developed supportive friendships but encountered problems when interacting with the wider peer network. Specific concerns around meeting new people and future employment were voiced. Conclusions: The adolescents described specific ways in which TS affects quality of life and social interactions, and the effort it can take to cope effectively with this condition. (Publisher abstract)

Journal article

Showcase for Boulders Indoor Climbing Centre

Author:
JENKINS Lyndsey
Journal article citation:
Llais, 109, Winter 2013/14, pp.17-18.
Publisher:
Learning Disability Wales

This article describes an event held at Boulders Indoor Climbing Centre in Cardiff to demonstrate how climbing is being used to improve the mental and physical wellbeing of a range of different users. It explains how the climbing has helped one 21 year old who sustained a brain trauma when he was 16 years old. The event also explained how Newport City Council's NEET Project uses Boulders as a way of engaging with young people. (Original abstract)

Book Full text available online for free

Health inequalities and people with a learning disability

Author:
BLACK Lesley-Ann
Publisher:
Northern Ireland Assembly. Research and Information Service
Publication year:
2013
Pagination:
26
Place of publication:
Belfast

This paper examines the evidence relating to the health inequalities faced by people with a learning disability, who have diverse needs and will often experience multiple health problems. The paper also considers policy developments from the Department of Health, Social Services and Public Safety (DHSSPS) in terms of addressing health inequalities in the learning disability population in Northern Ireland. These include the Bamford Action Plans (2009-2011 and 2012-2015) and a Service Framework for Learning Disability (2012). (Edited publisher abstract)

Journal article

Modification of motivational interviewing for use with people with mild intellectual disability and challenging behaviour

Authors:
FRIELINK Noud, EMBREGTS Petri
Journal article citation:
Journal of Intellectual and Developmental Disability, 38(4), 2013, pp.279-291.
Publisher:
Informa Healthcare

Background: Motivational interviewing is a promising method to increase treatment motivation for people with mild intellectual disability and challenging behaviour. The purpose of the present study was to identify how professionals could adapt motivational interviewing techniques for use with clients. Method: The authors conducted semistructured qualitative interviews and focus groups with 26 clients, parents, and professionals. A general inductive approach led to the identification of multiple core themes. Results: The authors recommend several modifications to accommodate motivational interviewing for use with clients: adapt to language level, adjust to cognitive abilities, and control for social desirability of responding. In addition, certain characteristics of professionals were also found to be critical for effective motivational interviewing: trustworthiness, engagement, acceptance, empathy, and honesty. Conclusions: Concrete recommendations for the adaptation of the motivational interviewing techniques for use with people with mild intellectual disability and challenging behaviour are identified. Certain characteristics of professionals are also critical for maximising the treatment motivation of clients. (Publisher abstract)

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