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Journal article

Reflections on a participatory project: the rewards and challenges for the lead researchers

Authors:
CONDER Jennifer, MILNER Paul, MIRFIN-VEITCH Brigit
Journal article citation:
Journal of Intellectual and Developmental Disability, 36(1), March 2011, pp.39-48.
Publisher:
Informa Healthcare

Participatory research offers potential for people with an intellectual disability to have an active voice in service provision. Using the example of a project to develop a quality of life tool in New Zealand, this paper aims to address 3 issues raised in a 2004 article by Ramcharan, Grant, and Flynn in relation to participation of people with an intellectual disability in research: lack of detail about level of participation, how people have been supported in their participation, and the extent to which participation in the project has changed the lives of the participants. The article includes a brief overview of the project, and presents a discussion drawn from reflections on the research process by the researchers. The researchers worked with people with an intellectual disability who were service users as co-researchers or participants in choosing indicators of quality of life. The article discusses the participation of the 6 co-researchers and 95 participants, the support provided, and whether co-researchers' and participants' lives were changed. The authors note that although the project achieved its goal of people with intellectual disability authoring a quality of life tool, there was a variation in participants' contribution, and the financial and practical support of the contracting organisation was crucial to enabling people to take part.

Journal article

Factors that influence outcomes for clients with an intellectual disability

Author:
RAFFENSBERGER Marilyn K.
Journal article citation:
British Journal of Guidance and Counselling, 37(4), November 2009, pp.495-509.
Publisher:
Taylor and Francis

Is counselling effective for clients with an intellectual disability? Practitioners question not only the ability of these clients to derive benefit from counselling but also their own ability to provide an effective service. However, this simplistic binary question does not do justice to the complexities of either the counselling process or the lives of those with an intellectual disability. A more useful question would be, 'What factors influence the counselling outcomes of these clients?' This review invites practitioners to refrain from questioning abilities, but rather to reflect on their practice in light of this latter question. Researchers are invited to broaden the scope of their enquiry to further assist practitioners' reflections.

Journal article

The mountain to be climbed

Author:
NOONE Zita
Journal article citation:
Professional Social Work, April 2008, pp.20-21.
Publisher:
British Association of Social Workers

The author, winner of a Social Workers' Educational Trust scholarship award, discusses her research visit to New Zealand as part of her investigation into palliative care for people with learning disabilities.

Journal article

Paid work and intellectual disability

Author:
REID Patricia M.
Journal article citation:
Journal of Intellectual and Developmental Disability, 22(2), June 1997, pp.87-96.
Publisher:
Informa Healthcare

Describes a survey in New Zealand in which selected agencies were asked to identify adults with intellectual disabilities who had paid community-based work. Agencies forwarded invitations to adults whom they considered were successfully employed. Seventeen workers responded and were interviewed on how they obtained and learned their job and initial and ongoing support. Themes such as independence at work, the continued need for links with formal support, choices in lifestyle opportunities and lack of career path options are discussed in this article. Strategies leading to better opportunities and greater employment rates of adults with intellectual disabilities are offered.

Book

The beliefs, values and principles of self-advocacy

Author:
INTERNATIONAL LEAGUE OF SOCIETIES FOR PERSONS WITH MENTAL HANDICAP
Publisher:
Brookline Books
Publication year:
1996
Pagination:
48p.
Place of publication:
Cambridge, MA

Booklet setting out values and principles for self-advocacy. Also contains sections on: support and the role of a support person; empowerment; institutions; and stories of good practice from around the world.

Book

New voices: self-advocacy by people with disabilities

Editors:
DYBWAD Gunnar, BERSANI Hank Jr.
Publisher:
Brookline Books
Publication year:
1996
Pagination:
286p.
Place of publication:
Cambridge, MA

Collection of papers on self advocacy by people with developmental disabilities, many by self advocates themselves. Provides an historical background to the development of the self advocacy movement in the Western world. Examines the current state of self advocacy activities, and concludes by projecting the movement's future course as it continues to be accelerate worldwide amongst people with learning difficulties.

Journal article

Self-management abilities of diabetes in people with an intellectual disability living in New Zealand

Authors:
HALE Leigh A., et al
Journal article citation:
Journal of Policy and Practice in Intellectual Disabilities, 8(4), December 2011, pp.223-230.
Publisher:
Wiley-Blackwell

Diabetes is more prevalent is people with intellectual disabilities than the general population. This qualitative study aimed to understand how to improve the self-management abilities of diabetes in people with an intellectual disability (ID) by exploring the understanding of diabetes held by 14 adults with ID and either type 1 or type 2 diabetes in New Zealand. Participants fell into three categories of understanding: those who had a good understanding; those who had limited understanding; and those with only a very basic understanding. While all of the participants were actively engaged in the self-management process, support from others was important, even for those with a good understanding of the disease. The authors concluded that while those with ID could be taught self-management, it was important to continue education and support throughout their lives. User-friendly teaching resources are recommended to achieve the education and support required.

Journal article

Clothing the emperor - what is now lacking in mental health services?

Author:
WARRINER Rob
Journal article citation:
International Journal of Leadership in Public Services, 6(3 Supplement), September 2010, pp.73-83.
Publisher:
Emerald

The focus of mental health services is now in supporting people to live well in their communities. It promotes relationships where people are active participants in their recovery, rather than passive recipients of treatment. Supporting people to overcome issues of disadvantage and social exclusion have become contemporary imperatives of community-based mental health services. It is suggested that the evolution of post-institutional mental health services requires not just a change in policy or practice, but the development and propagation of a philosophy and range of values that will underpin such contemporary practices. This emerging framework raises an agenda that is potentially in conflict with biomedical psychiatry as the fundamental driver of mental health service provision. It argues that leaders in the mental health sector are essential to moving forward. A framework for putting such values in action is suggested.

Journal article

Staying in the here-and-now: a pilot study on the use of dialectical behaviour therapy group skills training for forensic clients with intellectual disability

Authors:
SAKDALAN J. A., SHAW J., COLLIER V.
Journal article citation:
Journal of Intellectual Disability Research, 54(6), June 2010, pp.568-572.
Publisher:
Wiley

This brief report describes a pilot study evaluating the effectiveness of the dialectic behaviour therapy (DBT) group skills training programme adapted particularly for offenders with intellectual disability (ID). DBT has been used in individuals diagnosed with borderline personality disorder who exhibit severe emotional and behavioural dysregulation but there is limited research assessing its effectiveness with forensic clients with ID. Six participants (5 male, age range 23-29 years, mean IQ=57) from Auckland completed the 13-week adapted DBT group skills training programme. All exhibited challenging behaviours and had a history of prior charges or convictions for violent crimes. Pre- and post-tests instruments were used to measure dynamic risks, relative strengths, coping skills and global functioning. Overall there were improvements across all outcome measures. The decrease in the level of risks, increase in relative strengths and general improvement in overall functioning were significant. It is concluded that the DBT group skills training programme format has potential for use as a stand alone intervention. However the small sample size and lack of control in this pilot study is noted and further longitudinal research recommended to assess whether the programme can reduce recidivism for offending in this client group.

Journal article

Workplace culture analysis where people with intellectual disabilities work: a case study approach

Authors:
FILLARY Rose, PERNICE Regina
Journal article citation:
Journal of Intellectual and Developmental Disability, 30(3), September 2005, pp.176-180.
Publisher:
Informa Healthcare

Research evidence suggests that investigation of workplace culture assists in enhancing social inclusion of and job retention by people with intellectual disability. This research explored the potential of using Hagner's (2000) Workplace Culture Survey to identify inclusive characteristics of eight New Zealand workplaces where people with intellectual disability were employed by surveying eight employers. Eight workers with intellectual disability and eight co-workers were surveyed to assess inclusion levels in the culture of these workplaces. The results indicated that four workplaces had a strong workplace culture. Co-workers were generally well included in the workplace culture, whereas only three of the workers with intellectual disability were included to a similar extent. Full-time employment enhanced inclusion levels. Workers with higher support needs appear to be less included. The use of Hagner's Workplace Culture Survey is helpful in identifying inclusive workplaces and inclusion levels of both workers with intellectual disability and co-workers.

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