Marie Knox

Issues of active ageing: perceptions of older people with lifelong intellectual disability.

Objective(s):  The study aimed to investigate the lived experiences of older people with lifelong intellectual disability and to explore the meaning of active ageing for this group.

Uncovering Dimensions of Culture in Underperforming Group Homes for People with Severe Intellectual Disability

Culture recurs as an important but under-investigated variable associated with resident outcomes in supported accommodation for people with intellectual disability. This study aimed to conceptualize the potential dimensions of culture in all group homes and describe the culture in underperforming group homes. A secondary analysis, using an inductive interpretative approach, was undertaken of a large qualitative data set from a study that had used ethnographic and action research methods to explore the quality of life outcomes for residents in 5 small group homes. Five categories were developed: misalignment of power-holder values with organizations espoused values, otherness, doing for not with, staff centered, and resistance. Differences from institutional culture are discussed, and the potential of the findings as a starting point to consider culture in high performing group homes and develop a quantitative measure of culture.

Moving towards Midlife Care as Negotiated Family Business: Accounts of people with intellectual disabilities and their families “Just getting along with their lives together”

This study explores meanings of family care held by seven families that include a middle‐aged adult with intellectually disability. In‐depth interviews were conducted with members of each family—the person with intellectual disability, parents, siblings, and sibling spouses. Participants described care as simply getting on with their lives, as “Family Business”, characterised by the conduct of well‐understood tasks and routines. As such, all, including the person with intellectual disability, performed roles critical to the well‐being of each other and the family as a whole. Family Business was underpinned by negotiated, albeit often implicit, rules that reflected family values and were amenable to changes in circumstances throughout the lifecycle. Future planning was perceived as a sensitive whole family issue. Interdependence among members was key to retaining family independence from formal services that were regarded as a “top up”. Suggested is the importance of services adopting a relational approach to understanding family care and supporting future planning for middle‐aged people with intellectual disabilities, rather than simply focusing on “older carers”.

Identifying Good Group Homes: Qualitative Indicators Using a Quality of Life Framework

Abstract Despite change toward more individualized support, group homes are likely to remain for people with severe intellectual disability. As such, the search continues for ways to determine and maintain the quality of these settings. This article draws on in-depth qualitative analysis of participant observations conducted over 9-12 months in seven group homes for 21 people with a severe and profound level of intellectual disability. It explores the conceptualization of good outcomes and support for this group in terms of their quality of life and staff practices. The qualitative indicators of good outcomes for this group using quality of life domains can be used by auditors, community visitors, funders, advocates, or family members to guide observation and judgements about group homes.

“I Want to See the Queen”: Experiences of Service Use by Ageing People with an Intellectual Disability

Abstract People with intellectual disability are a relatively new but growing minority group within Australias ageing population. Disability policies point to the equal right of people with disabilities to a quality of life similar to that of other citizens. Disability services are increasingly required to provide individualised and responsive services, irrespective of age, for people with lifelong disabilities. The present study explored the everyday lives of older people with intellectual disability in Victoria and Queensland, examining their experiences of using disability services and the ways in which services responded to their ageing. The aim of the study was to inform practice and service development for older people with intellectual disability. The findings suggest that services facilitate important social relationships with other service users and staff. Most older people had a sense of belonging and led busy but directionless lives in two disconnected worlds. Their lives were subject to significant external present-focused control. Yet, despite this, neither services nor family members took responsibility for ensuring their sense of continuity or supporting the development of plans about their future. The experiences described suggest an urgent need for, but significant challenges in the implementation of, holistic indivdualised planning similar to the UK concept of person-centred planning.

Ethical challenges of life story research with ex‐prisoners with intellectual disability

This paper outlines the ethical considerations when engaging in life story research with ex‐prisoners with intellectual disability. Based on a study conducted in Queensland, Australia, the authors explore some of the challenges that have arisen through the lens of principle‐based ethics. The significant disadvantage experienced by ex‐prisoners with intellectual disability warrants further attention by social researchers, and care must be taken not to further harm this group through the research process. Issues pertaining to the broad ethical concepts of integrity, justice, respect for persons and beneficence are examined to identify the degree to which they can guide the actions of the life story researcher. Examples are given as to how the researcher responded to difficulties as they arose and the authors discuss ways forward from a principle‐based approach.

Mobile technology in inclusive research: tools of empowerment

Inclusive research is an accepted approach when conducting research about individuals with disabilities. No studies have been published to date on using mobile technology to support people with intellectual disabilities as researchers. An inclusive research team of researchers with intellectual disabilities and academic researchers used mobile technology to support research skill acquisition. They conducted 15 joint research training sessions, followed by 10 research meetings. In order to discuss the experience of using iPads to support researchers with intellectual disabilities, the authors used a multiple-case study approach. Findings included the challenges and successes of mobile technology implementation. In conclusion, the iPads enhanced participation opportunities for the researchers with intellectual disabilities not only in the research, but also in other areas of their lives. This also brought to light the vulnerability of women with intellectual disabilities and the lack of control they often experience in their lives.

Approach to challenging behaviour: a family affair

Over the past 30 years, research in the area of applied behaviour analysis has led to a rich knowledge and understanding of the variables that influence human behaviour. This understanding and knowledge has given rise to a range of assessment and intervention techniques that have been applied to individuals with challenging behaviour. Interventions have produced changes in the severity and frequency of behaviours such as self‐injury, aggression, and property destruction, and have also led to the acquisition of desired behaviours. While behaviour change has been achieved, families have expressed a desire for positive behaviour support approaches that adopt a family focus. Research and development of support frameworks that emphasise the interrelatedness of family members, and the child with a disability as part of his or her family, have gained prominence in the family systems literature. The present paper reviews some of the behaviourally based research in this area. Through the use of a case illustration, the authors discuss the links between behavioural support and family‐centred support systems for children with developmental disabilities. Theoretical and practical implications are considered and areas for future research are highlighted.

Making Sense of Mental Illness as a Full Human Experience: Perspective of Illness and Recovery Held by People With a Mental Illness Living in the Community

There is substantial current interest in building evidence about recovery from mental illness in order to inform comprehensive practice in health and social paradigms. This article presents accounts related to recovery and illness expressed by eight people through a Participatory Action Research project. The research facilitated entry to their subjective experiences of living in the community as an artist with a mental illness. Specific concern was raised of recovery as a clinical term with its requirement to meet distinct conventions of recovery formulated by health workers. This article emphasizes that individualized values of mental illness and recovery are interconnected to dynamic and complex perceptions drawn from experiencing life and experiencing things in their life.

Negotiating disability and colonisation: the lived experience of Indigenous Australians with a disability

Disability among Indigenous Australians lies at a nexus between the ongoing impact of European settlement from 1788 and the social effects of living with a disability. Colonisation, with its political, social, economic and cultural concomitants, continues to impact on Indigenous experience, extending to the institutions and services concerned with disability. There is little attention paid to Indigenous Australian disability in general, and the need to decolonise disability has recently been emphasised. Ethnographic research in Brisbane, Australia among Indigenous people with a disability (mostly related to diabetes) confirms the ongoing impact of colonisation. While this experience pervades all aspects of their lives, it also moderates their experience of living with a disability in positive ways. However, while individuals can negotiate their personal experience of disability, the decolonisation of disability services presents challenges that need to be addressed.