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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:
- Taylor and Francis
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.
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
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.
Stepping Stones – a group therapy programme for the treatment of emotion regulation difficulties in offenders with an intellectual disability
- Authors:
- OXNAM Paul, GARDNER Emma
- Journal article citation:
- Journal of Learning Disabilities and Offending Behaviour, 2(4), 2011, pp.146-151.
- Publisher:
- Emerald
This article presents an overview of the Stepping Stones Group Therapy Programme, based in Auckland, New Zealand. The programme is a 42-week programme that addresses the emotion regulation needs of offenders with an intellectual disability. The article discusses the process of implementing the group treatment programme in a secure forensic intellectual disability service. Since the start of the programme, there has been a reduction in both the frequency of aggression and the need for physical and chemical de-escalation. Clients have also demonstrated a greater understanding of their emotional responses and an improved ability to use functional means of managing distress and solving life problems. The article demonstrates that while implementing group therapy programmes for clients with intellectual disabilities and co-morbid emotion regulation difficulties can be challenging, treatment with this group can be successful.
Planned pregnancy, planned parenting: enabling choice for adults with a learning disability
- Authors:
- CONDER Jennifer, et al
- Journal article citation:
- British Journal of Learning Disabilities, 39(2), June 2011, pp.105-112.
- Publisher:
- Wiley
Most adults, including those with learning disabilities, want to be parents. The right support and enabling informed decisions about becoming a parent could increase the number of parents with learning disabilities who successfully raise their own child. The stories told in this article explore the experiences of parents with learning disability from their decision to become parents or their unexpected pregnancy through their early years of parenting. The stories are drawn from repeated interviews over 3 years with 6 parents (2 single parents and 2 couples) and particularly focus on the information and support that the participants had to assist them on parenting decisions. The stories are used to illustrate issues relevant to informed decision-making, including knowledge of contraception, the development of parenting skills and the importance of social support. Through their contrasting stories, a combination of family support and appropriately responsive services is identified as critical to the development of a positive parenting context. The findings highlight the need for professionals and support people who work with young people with a learning disability to ensure that they educate and support them to make informed decisions about contraception, pregnancy and parenting.