Defining social inclusion of people with intellectual and developmental disabilities: An ecological model of social networks and community participation

Background Persons with intellectual and develop- mental disabilities have had regrettably few oppor- tunities to voice their opinions on aspects of research with which they have had direct experi- ence. Understanding and responding to these views can contribute to policies and practices that increas- ingly treat people as they desire to be treated. Methods We conducted individual interviews and focus groups with 16 adults with intellectual and developmental disabilities to examine their perspectives on participating in research. Results Our analysis indicates that adults with intellectual and developmental disabilities want to engage in research to improve their quality of life and to have greater access to a worthwhile activity through more active participation. Our results also highlight trust as a critical ingredient in the success of research with this group. Conclusions Our findings suggest that despite ethical challenges, researchers can and should pursue research that has the potential to improve the lives of persons with intellectual and develop- mental disabilities. Such research is more likely to be both ethical and successful if researchers pay attention to enhancing autonomy and person- centredness, while at the same time engendering participant trust.

'You need to let your voice be heard': research participants' views on research

Qualitative research methods that focus on the lived experience of people with health conditions are relatively underutilised in physiotherapy research. This article aims to introduce interpretative phenomenological analysis (IPA), a research methodology oriented toward exploring and understanding the experience of a particular phenomenon (e.g., living with spinal cord injury or chronic pain, or being the carer of someone with a particular health condition). Researchers using IPA try to find out how people make sense of their experiences and the meanings they attach to them. The findings from IPA research are highly nuanced and offer a fine grained understanding that can be used to contextualise existing quantitative research, to inform understanding of novel or underresearched topics or, in their own right, to provoke a reappraisal of what is considered known about a specified phenomenon. We advocate IPA as a useful and accessible approach to qualitative research that can be used in the clinical setting to inform physiotherapy practice and the development of services from the perspective of individuals with particular health conditions.

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Using interpretative phenomenological analysis to inform physiotherapy practice: An introduction with reference to the lived experience of cerebellar ataxia

Individuals with intellectual disabilities (ID) and challenging behavior often have complex care needs and may be reliant on care support services. This thematic synthesis examines published qualitative research on the experiences of individuals with ID in relation to received service supports and interventions. Seventeen studies met criteria. Four themes emerged: (1) Imbalance of power, (2) Causal attributions about challenging behavior, (3) Experiences of restrictive interventions, and (4) Opportunities for improvement: proactive interventions. The accumulative stressors of living in a residential placement were regarded as a cause of continued challenging behaviors. The impersonal attitude of support staff was regarded as a major contributory factor. The findings can inform service providers about how best to support individuals with ID and challenging behavior.

"I'm not a patient, I'm a person": The Experiences of Individuals With Intellectual Disabilities and Challenging Behavior-A Thematic Synthesis of Qualitative Studies

Purpose of review A broad range of organizational issues can have an impact on client outcomes in residential services for people with intellectual disabilities, and staff psychological factors are increasingly being recognized as important. This review explores some of the recent literature on staff attitudes, attributions, well being and other factors that may impact on outcomes for residents. Recent findings Staff beliefs are associated with the relationship between challenging behaviour and burnout experienced by staff; resident outcomes such as placement breakdown may also be influenced by staff attributions. There is also a body of evidence emerging that suggests staff psychological factors may influence the quality of physical healthcare received by people with intellectual disabilities. Summary Sufficient evidence exists to suggest that clinicians should routinely consider assessing and evaluating staff psychological factors in clinical interventions in order to assess their potential impact on client care. Further research is required, particularly, to evaluate the specific impact of staff psychological factors on resident outcome.

How do staff psychological factors influence outcomes for people with developmental and intellectual disability in residential services

Background This study explores the perceptions of a group of adults with intellectual disability regarding direct support staff. Method Semi-structured interviews relating to experiences of direct support staff were developed from two focus groups. These interviews were conducted with 11 adults with intellectual disability residing within a forensic inpatient service. Results Interpretative Phenomenological Analysis (IPA) revealed two superordinate themes; namely, staff relationship factors and positive and negative attributes of staff. The participants valued relationships with staff based on qualities such as honesty, trust, and a caring, nurturing manner that enabled individuals to feel safe. Staff characteristics such as immaturity, inexperience, and a short temper appeared to lead to feelings of discontentment amongst the participants. Conclusions The implications of the findings are discussed in relation to clinical practice, staff recruitment, and training.

Rachael Clarkson

Papers

What characteristics do service users with intellectual disability value in direct support staff within residential forensic services