Diane Craig

“She's been involved in everything as far as I can see”: Supporting the active participation of people with intellectual disability in community groups

Abstract Background The social processes that operate in community groups need to be better understood if people with intellectual disability are to be included in such groups. This study aimed to identify the nature and impact of the group processes on the active participation of people with intellectual disability. Method Extensive field notes were taken during 2 years of participant observation whereby 5 people with a moderate level of impairment were supported to participate as individuals in community groups for periods of 5 to 10 months. Analysis used a critical realist approach. Results Active participation was influenced by the interaction of 5 key social processes: leadership response, characteristics of the participants with intellectual disability, access to expertise, the presence of an integrating activity, and dealing with the difference dilemma. Conclusions By revealing these processes, the study identified a number of interventions and ways of approaching community groups that have the potential to increase the extent to which people with moderate levels of impairment become active participants.

The potential for active mentoring to support the transition into retirement for older adults with a lifelong disability

Older people with a lifelong disability, such as intellectual disability, face significant barriers to enjoying active ageing as they transition into retirement. Active ageing involves enhancement of quality of life through optimising the health, participation, and security of individuals and populations (World Health Organization [WHO], 2002). We propose that the creation of access and linkage, or ‘‘community building’’ structures (Bigby, 1992) within the community that use active support (Stancliffe, Jones, Mansell, & Lowe, 2008) and co-worker training (Farris & Stancliffe, 2001) models, could overcome some of these barriers. Active support and co-worker training represent two empirically tested models of support that can enhance both engagement and participation. Potentially, an adaptation of these models will help create the foundation training for a cost-effective access and linkage program between disability services and generic community groups that will promote active ageing and a successful transition into retirement.

Mentors experiences of using the Active Mentoring model to support older adults with intellectual disability to participate in community groups

Abstract Background Social inclusion is a widely acknowledged goal; who is best positioned to provide support and how support is delivered are key questions. Using Active Mentoring training, members of community groups mentored a person with intellectual disability and supported their inclusion in that group. Methods Interviews with 14 mentors explored their experiences of supporting a previously unknown person with intellectual disability to participate in their community group. Findings The core theme was No Different From Us. Mentors saw beyond the disability, they valued others, were community leaders, and had intrinsic qualities. With some basic orientation to the task, mentors were able to support the inclusion of their mentee in the group. Conclusion Community members are willing to support people with intellectual disability to join their community groups. The Active Mentoring training is one way of harnessing the goodwill of community groups and their members to include people with intellectual disability to participate on an individual basis in community groups.

Responsiveness to self-report questions about loneliness: a comparison of mainstream and intellectual disability-specific instruments

BACKGROUND We compared responsiveness to two self-report assessments of loneliness: the UCLA Loneliness Scale (UCLALS) designed for the general community, and the Modified Worker Loneliness Questionnaire (MWLQ) designed for people with intellectual disability (ID). METHODS Participants were 56 older adults with disability - 40 individuals with ID and 16 without ID. They were individually assessed on the MWLQ and the UCLALS. The difficulty of the items in both scales was evaluated in relation to readability, features of question wording, question length and response format. RESULTS The UCLALS was more difficult than the MWLQ on each of the difficulty dimensions assessed. There was significantly greater responsiveness to the MWLQ than the UCLALS, especially among people with ID. CONCLUSIONS To enable as many people with ID as possible express their views on loneliness, the ID-specific MWLQ is a much better choice. However, this choice comes at the cost of ready comparison to loneliness data for the general community, which is available for widely used assessments such as the UCLALS.

Critical Realism in Social Work Research: Examining Participation of People with Intellectual Disability

Abstract Critical realism has not been taken up readily within social work research and this may be due to the difficulty of the language and lack of practice examples of its applicability. This paper outlines the basic precepts of critical realism, the implications of these for methodology, and then offers a practical example of its application to social work research in the area of intellectual disability using some of the techniques of more familiar qualitative research methodologies. In response to the increased influence of poststructuralist ideas within social work along with the somewhat contradictory call for evidence-based practice, this paper suggests critical realism as a way of developing empirically based knowledge about the effects of interventions while at the same time accounting for the complexity involved in social work practice.

A case study about the supported participation of older men with lifelong disability at Australian community-based Men's Sheds

Abstract Background This article presents an insight into the supported participation of older men with a lifelong disability in community Mens Sheds. We draw on a subsample of men from a 3-year study that explored how older people with a lifelong disability could be supported to transition to retirement from sheltered workshops. Method Data arose from a range of sources – both quantitative and qualitative – and are structured here into a descriptive case study about how mentors at Mens Sheds provided support to older men (n = 9) with lifelong disability. Findings Older men with disability want to enjoy an active retirement similar to their peers without disability. These men can join mainstream community groups such as Mens Sheds, provided they are offered just the right amount and type of support. Conclusion Mens Sheds are largely untapped community resources where men with disability are welcome, provided that appropriate support is offered to the members of the shed.

A case study of an intentional friendship between a volunteer and adult with severe intellectual disability: “My life is a lot richer!”

ABSTRACT Background Friendships between people with and without intellectual disability remain elusive. Little is known about factors that support the development of such friendships and what services can do to promote the likelihood that contact will develop into friendship. Method A case study approach was used to explore the qualities and development of a long-term friendship between 2 women, 1 of whom has severe intellectual disability. Qualitative methods of data collection and analysis were used including interviews and field notes from participant observation. Findings The relationship progressed through 3 stages of introduction, consolidation, and autonomy supported by the working practices and culture of the disability support organisation. Individualised activity, the role of a connector, and a culture of positive expectations underpinned the growth of the friendship. Conclusions Friendships do not happen by chance but require thought, attention, dedicated resources, and commitment to long-term outcomes to be achieved.

Ethical and practical issues for researchers supporting older adults transition into retirement

Aim: Two former studies undertaken in Kent exploring the attitudes and involvement of palliative care services with ID care teams showed limited awareness of each other’s service. Specialist palliative care services were involved in the care of few people with ID and ID teams had limited contact with palliative care. Moreover both had limited understanding of each other’s roles and there was evidence of negative attitudes including ‘patronising sympathy’. Conclusions recommended the development of increased collaboration between services. This study aimed to explore the ’next step’ of how to link both types of service together so as to improve the experience of end-of-life care for people with ID. Method: Case studies of the establishment of ‘link team’ members were analyzed to explore positive and negative experiences of collaboration. Results: ‘Link team’ members proved helpful for collaboration between specialists in palliative care and ID carers, allowing care to be provided within individuals’ homes. Conclusion: Extra support and expertise available can be developed as a result of this collaborative approach, improving end of life care for people with ID.Aim: To compare the ways in which people with and without ID who access care services understand and experience funeral ceremonies. The objective was to compare service provision in order to identify and promote good practice in relation to the support and social inclusion of people with ID in the processes around funerals. Method: Five focus group sessions were organized for 26 participants (16 people with ID and 10 older people without ID) in Kent and London. Data were analyzed using a grounded theory approach. Results: Similarities existed between the client groups in terms of views and beliefs held about funerals but differences were found in relation to service support, especially around choice to participate in friends/loved one’s funerals as well as considerations concerning the type of funerals individuals wished for themselves. Conclusion: Equality of opportunity and choice in life may have improved for people with ID but there remains a clear divide in the way individuals with ID are supported to experience funerals as a part of the grieving process compared to their non ID counterparts.

Disconnected expectations: staff, family and supported employees perspectives about retirement

Aim: Two former studies undertaken in Kent exploring the attitudes and involvement of palliative care services with ID care teams showed limited awareness of each other’s service. Specialist palliative care services were involved in the care of few people with ID and ID teams had limited contact with palliative care. Moreover both had limited understanding of each other’s roles and there was evidence of negative attitudes including ‘patronising sympathy’. Conclusions recommended the development of increased collaboration between services. This study aimed to explore the ’next step’ of how to link both types of service together so as to improve the experience of end-of-life care for people with ID. Method: Case studies of the establishment of ‘link team’ members were analyzed to explore positive and negative experiences of collaboration. Results: ‘Link team’ members proved helpful for collaboration between specialists in palliative care and ID carers, allowing care to be provided within individuals’ homes. Conclusion: Extra support and expertise available can be developed as a result of this collaborative approach, improving end of life care for people with ID.Aim: To compare the ways in which people with and without ID who access care services understand and experience funeral ceremonies. The objective was to compare service provision in order to identify and promote good practice in relation to the support and social inclusion of people with ID in the processes around funerals. Method: Five focus group sessions were organized for 26 participants (16 people with ID and 10 older people without ID) in Kent and London. Data were analyzed using a grounded theory approach. Results: Similarities existed between the client groups in terms of views and beliefs held about funerals but differences were found in relation to service support, especially around choice to participate in friends/loved one’s funerals as well as considerations concerning the type of funerals individuals wished for themselves. Conclusion: Equality of opportunity and choice in life may have improved for people with ID but there remains a clear divide in the way individuals with ID are supported to experience funerals as a part of the grieving process compared to their non ID counterparts.