Research participation by people with intellectual disability and mental health issues : an examination of the processes of consent

Balancing the demands of research and ethics is always challenging and even more so when recruiting vulnerable groups. Within the context of current legislation and international human rights declarations, it is strongly advocated that research can and must be undertaken with all recipients of health care services. Research in the field of intellectual disability presents particular challenges in regard to consenting processes. This paper is a critical reflection and analysis of the complex processes undertaken and events that occurred in gaining informed consent from people with intellectual disability to participate in a study exploring their experiences of being an inpatient in mental health hospitals within Aotearoa/New Zealand. A framework based on capacity, information and voluntariness is presented with excerpts from the field provided to explore consenting processes. The practical implications of the processes utilised are then discussed in order to stimulate debate regarding clearer and enhanced methods of gaining informed consent from people with intellectual disability.

Vulnerability to loneliness in people with intellectual disability: an explanatory model

Research with typically developing groups has identified loneliness as a significant predictor of a range of physical and mental health problems. This paper reviews research about loneliness in children and adults with intellectual disability. Although a considerable body of evidence has highlighted the difficulties individuals with intellectual disability have with friendships, there is a relative scarcity of research focused explicitly on loneliness. The available evidence suggests that up to half of those with intellectual disability are chronically lonely, compared with around 15-30% of people in the general population. The cognitive, physical and mental health problems already associated with intellectual disability are likely to be compounded by experiences of chronic loneliness. We argue that people with intellectual disability are highly vulnerable to loneliness and present a theoretical model of vulnerability that comprises three reciprocally influencing domains: social attitudes and expectations; opportunities and experiences; and skill deficits associated with intellectual disability. We propose that societal views which have traditionally devalued and stigmatised those with intellectual disability limit their opportunities for experiencing social and emotional connectedness with others. Individual skill deficits in areas such as communication, self-regulation and social understanding, as well as functional difficulties associated with intellectual disability, also potentially influence the opportunities and experiences of people with intellectual disability, both directly and via multiple layers of the social context. In turn, limited opportunities will entrench particular skill deficits and reinforce negative attitudes towards intellectual disability. Future research about loneliness and intellectual disability needs to address the difficulties of measuring emotional isolation in this population, as well as the possibility that people with intellectual disability may understand, experience and interpret loneliness somewhat differently from others. The model proposed in this paper provides a starting point for developing a more sophisticated understanding of the experience of loneliness for individuals with intellectual disability.

Stress and burnout amongst professional carers of people with intellectual disability : another health inequity

Purpose of review This paper summarizes trends in the research literature about stress and burnout in the lives of people who are the professional carers of people with intellectual disability. The principal time period considered was from 2004 to 2006. Recent findings Studies reviewed here focus on several themes including inequities affecting professional carers of people with intellectual disability and the possible effects of some models of care on inequities. Implications for people with intellectual disability are also considered. Summary The diaspora of people with intellectual disability into the community and their accompanying services found a whole new set of unpredicted and unprecedented challenges. Life in the community has rendered professional carers of people with intellectual disability more clearly vulnerable to stress and burnout for a variety of complex reasons, some identified and others as yet unrecognized. Lack of support and lack of role definition are particular problems. Presence of physical and mental health inequities result in major disparities in community care for people with intellectual disability.

Experiences of leaving prison for people with intellectual disability

Purpose – The support given to prisoners when they leave prison has a bearing on their success in starting a new life and on community safety. This paper aims to examine the community re-entry experiences of ten people with an intellectual disability in Queensland, Australia. Design/methodology/approach – The findings in this paper are part of a wider study on the life stories of ex-prisoners with an intellectual disability. Seven male and three female participants with intellectual disability were interviewed using a semi-structured life story method. Interviews were respectful of the communication styles of participants and involved multiple interview sessions, ranging from two to nine interviews per person. Data were analysed using narrative and thematic analysis with the assistance of NVivo 8 software. Findings – Participants found the process of leaving prison an emotional event, often clouded with both confusion about when release was to occur, and uncertainly as to what they could expect on the outside. The need for concrete information and coordinated hands-on assistance in negotiating supports in the community have significant implications for correctional and community services. Originality/value – This study captures the perspectives of people with intellectual disability on community re-entry. These perspectives are often overlooked in policy and practice developments in the field of corrections. Yet without understanding this group, the field is unable to address their particular needs.

Ethics in sexual behavior assessment and support for people with intellectual disability

Sexuality is an issue of equality, rights, and ethics, especially when it comes to the sexuality of people with intellectual and developmental disabilities. This paper offers a discussion of ethics related to the assessment and intervention supports of sexual behavior in people with intellectual and developmental disabilities. A brief history of sexuality and disability is presented. Issues of sexual abuse of people with intellectual and developmental disabilities and the laws related to sterilization, pornography, sexual rights, and consent are explored. Finally, specific ethical concerns related to intervention by behavior analysts in the realm of sexual behavior are examined.

La inclusión social y laboral de las personas con discapacidad intelectual mediante los programas de empleo con apoyo : un reto para la Orientación. 'Social and labour inclusion of people with intellectual disability through supported employment programs : a challenge for guidance'.

Resumen tomado de la publicación. Con el apoyo económico del departamento MIDE de la UNED

Emerging trends in the use of drugs to manage the challenging behaviour of people with intellectual disability

Background Concerns about the pharmacological management of the behaviour of individuals with intellectual disability have resulted in the development of legislative and procedural controls.
Method This Australian study provided a comparison of 873 reported cases where drugs were administered to manage behaviour in March 2000, with 762 cases reported in March 1993. Drug use in individuals who remained medicated across time (n = 316: recurrent sample) was also compared with those who were reported only in 1993 (n = 329: limited sample).
Results A small decrease in the proportion of individuals who were reported to have received medication was evident over time (from 5% to 4.5% of total population). However, this was accompanied by an increase in drug diversity and interclass polypharmacy. An increase in antidepressant use was evident (from 7.4% to 13.8% of reported drugs), and there was a trend towards greater reporting of medication for acute behavioural problems and medication use with children. Greater use of antipsychotic drugs was evident in individuals who remained medicated across time compared with those who did not.
Conclusions The findings suggest the need for continuous research into practice. The fact that many individuals receive medication over long periods makes it incumbent on service providers to engage in regular, comprehensive and individualized review and evaluation of medication regimes.

Attitudes towards people with intellectual disability : an Australian perspective

Attitudes in Australia toward people with intellectual disabilities were investigated among students, disability services professionals, and the general population. Three previously validated questionnaires and a measure of respondent self-reported "social desirability" were used. Students and disability services professionals exhibited similar attitudes, with both groups reporting significantly more positive attitudes than members of the general population. More positive attitudes were evident among younger people, people with higher educational attainment, and individuals with a prior knowledge of or regular contact with people with intellectual disabilities. These respondents were less likely to support the principles of eugenics and more likely to support the paradigm of community inclusion. The authors make recommendations concerning the development of policies and strategies to foster the acceptance and inclusion of adults with intellectual disabilities in the wider community. Further studies that include the use of qualitative techniques and target people in the general population are recommended.

Depression in people with intellectual disability : an evaluation of a staff-administered treatment program

The prevalence of co-morbid depression in people with intellectual disability (ID) provides a strong rationale for the early identification and treatment of individuals at risk. The aim of this study was to evaluate a staff-administered group CBT program for the treatment of depression in people with mild ID. A sample of 13 staff employed at two community-based disability agencies were trained to deliver the program to 47 individuals with mild ID and symptoms of depression. A wait list control group comprised of 27 individuals subsequently completed the program. Compared to the control group, individuals who had participated in the treatment program showed lower depression scores, and fewer automatic negative thoughts. Furthermore, these changes were maintained at a 3-month follow-up. The results indicate that staff can be trained to deliver a CBT program within community settings that is effective in the reduction of depression symptomatology in people with mild ID.

The measurement of subjective wellbeing in people with intellectual disability in Australia

The importance of measuring quality of life, and most particularly the personal wellbeing of people with intellectual disabilities (ID), is now recognized. The measurement of wellbeing is an important component of program evaluation and can assist in the identification and planning of individualized support needs. There remains, however, a need for further research in this area. This paper describes a new scale, the Personal Wellbeing Index Intellectual Disability Scales (PWI-ID), which has been shown to be valid and reliable. Data is presented regarding its use in the measurement of wellbeing in people with ID and the focus of discussion is on its advantages and limitations.

Assessing behaviour support plans for people with intellectual disability before and after the Victorian Disability Act 2006

Background : This study sought to elucidate the extent to which behaviour support plans for people with intellectual disability are inclusive of best practice criteria, with a comparison made prior to and following proclamation of the Disability Act (2006) in Victoria, Australia.

Method : This study used a data collection instrument developed by the researchers incorporating best practice criteria as identified in the review of literature and Victorian legislative requirements. The instrument was used to assess a sample of behaviour support plans.

Results : Best practice criteria are inadequately included in behaviour support plans with little difference between pre- and post-Act plans.

Conclusion : The results of this study indicate that disability support staff are ill equipped to undertake the complex assessments, planning, and implementation associated with behaviour support strategies, despite the legislative framework that guides and directs this intervention