‘We just call them people’: positive regard as a dimension of culture in group homes for people with severe intellectual disability

BackgroundA dimension of the culture in group homes is staff regard for residents. In underperforming group homes, staff regard residents as being not ‘like us’ (Bigby, Knox, Beadle-Brown, Clement & Mansell, 2012). We hypothesized the opposite pole of this dimension, in higher performing group homes, would be that staff regard residents positively.MethodThree in-depth qualitative case studies were conducted in higher performing group homes using participant observation, interviews and document review.ResultsConsistent pattern of staff practices and talk, as well as artefacts, demonstrated staff had a positive regard for residents, who were seen as being ‘like us’. Explicit and continuing attention was given to sustaining positive regard for residents in everyday staff practices and to turning abstract values into concrete realities.ConclusionsThis positive cultural norm was established, operationalized and embedded through structures, such as a formal policy about language, and processes such as peer monitoring and practice leadership.

Use of the My Health Record by people with communication disability in Australia: A review to inform the design and direction of future research

BACKGROUND: People with communication disability often struggle to convey their health information to multiple service providers and are at increased risk of adverse health outcomes related to the poor exchange of health information. OBJECTIVE: The purpose of this article was to (a) review the literature informing future research on the Australian personally controlled electronic health record, 'My Health Record' (MyHR), specifically to include people with communication disability and their family members or service providers, and (b) to propose a range of suitable methodologies that might be applied in research to inform training, policy and practice in relation to supporting people with communication disability and their representatives to engage in using MyHR. METHOD: The authors reviewed the literature and, with a cross-disciplinary perspective, considered ways to apply sociotechnical, health informatics, and inclusive methodologies to research on MyHR use by adults with communication disability. RESEARCH OUTCOMES: This article outlines a range of research methods suitable for investigating the use of MyHR by people who have communication disability associated with a range of acquired or lifelong health conditions, and their family members, and direct support workers. CONCLUSION: In planning the allocation of funds towards the health and well-being of adults with disabilities, both disability and health service providers must consider the supports needed for people with communication disability to use MyHR. There is an urgent need to focus research efforts on MyHR in populations with communication disability, who struggle to communicate their health information across multiple health and disability service providers. The design of studies and priorities for future research should be set in consultation with people with communication disability and their representatives.

The first year: the support needs of parents caring for a child with an intellectual disability

AIM: To describe the support needs of parents caring for a child with an intellectual disability in the first year of life. BACKGROUND: Parents of children with intellectual disabilities face significant challenges during the first year of their child's life which is an important developmental period not previously addressed in the literature. The provision of support by health professionals, particularly nurses and midwives, during this crucial period can impact on parental well-being and on the health and developmental outcomes of their children. However, parents often feel unsupported. DESIGN: The study used a qualitative descriptive methodology. METHODS: Semi-structured interviews were conducted with parents of eleven children with an intellectual disability in Victoria, Australia, during 2014. Interviews were digitally recorded, transcribed verbatim and analysed using thematic data analysis. FINDINGS: Three key areas of support need were identified to assist parents to provide effective care for their child with an intellectual disability in the first year of life: (1) emotional support as parents adjusted to their role of caring for a child with an intellectual disability; (2) information support as they embarked on a quest for knowledge; and (3) support to facilitate their connection to peer networks. The findings highlighted inconsistent provision of support for parents. CONCLUSION: This study informs health professionals about how to provide holistic, timely support to parents of children with intellectual disabilities in the first year of life. There is an urgent need to review how nurses and midwives can provide relevant support that is responsive to parents' needs.

Parental Adjustment to Disability, Stress Indicators and the Influence of Social Support

Research into families of children and young people with disability maintain that parents or caregivers seem to experience higher levels of global stress than parents of children without disabilities, thereby presenting a high risk of developing disorders in their health and quality of life. The aim of this study is to understand the differences in parental stress and social support among groups of parents whose children have different disabilities in the context of parental adjustment to disability. Considering that adjustment is related to the effectiveness with which the family uses its resources and the support of their social network, we intend to analyse the differences of stress and social support among groups of parents of children with different problems and to clarify the relationships between the variables under study in order to adapt family intervention strategies. For this purpose a comparative, descriptive-correlational study was undertaken. The convenience sample included 152 parents of children with different disabilities (82 with intellectual disability, 37 with motor problems and 33 with autism) supported by schools and institutions in Viseu. The instruments used were: a Portuguese version of the Parenting Stress Index (Abidin, 1995), the Social Support Questionnaire – short version (Pinheiro & Ferreira, 2001) and a Parental Questionnaire (demographic and family data). Data were collected in schools and institutions that support people with disabilities, located in the Municipality of Viseu (Portugal). The results revealed significant differences between groups of parents in the partial results of parental stress, specifically in the Hyperactivity/Distract (DI), Acceptability (AC) and Adaptability (AD), dimensions of the Child Domain subscale (CD stress) and the Role Restriction (RO), dimension of Parent Domain subscale (PD stress). With regard to social support dimensions, we found significant differences between parents in the extent and availability of the social support network (SSQN).

Quality Physical Activity Participation for Military Veterans with a Physical Disability

Minimal research has explored what comprises a quality physical activity (PA) participation experience, particularly among military Veterans with a physical disability for whom evidence of the benefits of PA is growing. To address this research gap, this dissertation examines quality PA participation among military Veterans with a physical disability. Manuscript 1 explores the views of Veterans with a physical disability regarding what elements constitute a quality PA experience, and how these elements may be fostered. Eighteen Veterans with various physical disabilities and PA experiences participated in interviews. Four quality elements were identified via thematic analysis: group cohesion, challenge, having a role, and independence and choice. A further three factors (the physical and social environments, and program structure) were identified as precursors for a quality experience. Manuscript 2 explores how PA programs for Veterans with a physical disability are delivered, and how these delivery strategies link conceptually to quality participation. Interviews were conducted with program staff from three PA programs for Veterans, and program documentation collected, to develop an understanding of program delivery strategies. Four strategies with potential links to quality participation were identified through thematic analysis: foster social connections, challenge participants, tailor programs and outcomes to match participant needs, and include knowledgeable coaches and instructors. Manuscript 3 evaluates the participation of Veterans with functional impairments in PA events, and examines the relationships among quality precursors, quality elements, and participation outcomes. Results indicate that program participation did not promote long-term increases in PA indicators. However, an indicator of the quality element belongingness mediated the relationship at particular time-points between coach interpersonal skills and three participation outcomes: family integration, PA intentions, and PA planning. These findings suggest that a quality participation experience created by coaches may positively impact the transition to civilian life, and promote efforts to engage in ongoing PA. Overall, this dissertation contributes towards a greater depth in understanding of the experiences of Veterans with a physical disability in PA programs. The findings begin to provide a foundation for researchers and practitioners aiming to create, deliver, and promote quality PA interventions and programming for Veterans with a physical disability.

Comparing children's self-report instruments for health-related quality of life using the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY)

Children with chronic conditions often experience a long treatment which can be complex and negatively impacts the child's well-being. In planning treatment and interventions for children with chronic conditions, it is important to measure health-related quality of life (HrQoL). HrQoL instruments are considered to be a patient-reported outcome measure (PROM) and should be used in routine practice. Purpose: The aim of this study was to compare the content dimensions of HrQoL instruments for children's self-reports using the framework of ICF-CY. Method: The sample consist of six instruments for health-related quality of life for children 5 to 18 years of age, which was used in the Swedish national quality registries for children and adolescents with chronic conditions. The following instruments were included: CHQ-CF, DCGM-37, EQ-5D-Y, KIDSCREEN-52, Kid-KINDL and PedsQL 4.0. The framework of the ICF-CY was used as the basis for the comparison. Results: There were 290 meaningful concepts identified and linked to 88 categories in the classification ICF-CY with 29 categories of the component body functions, 48 categories of the component activities and participation and 11 categories of the component environmental factors. No concept were linked to the component body structures. The comparison revealed that the items in the HrQoL instruments corresponded primarily with the domains of activities and less with environmental factors. Conclusions: In conclusion, the results confirm that ICF-CY provide a good framework for content comparisons that evaluate similarities and differences to ICF-CY categories. The results of this study revealed the need for greater consensus of content across different HrQoL instruments. To obtain a detailed description of children's HrQoL, DCGM-37 and KIDSCREEN-52 may be appropriate instruments to use that can increase the understanding of young patients' needs.

Legitimising children’s evidence: Inclusive participatory research with children with disability

Achieving human rights is at the core of development outcomes, and the achievement of positive development outcomes increasingly relies on evidence-based policy and practice. However, people with disability have been routinely excluded from research evidence and knowledge production, both due to a lack of interest in their issues (Yeo and Moore, 2003) and through an over-reliance on research design that does not address barriers to their participation as research respondents (Wilson et al. 2013). Children with disability are even more marginalised from participation in knowledge production processes and have been passively subjected to research being conducted on or about them, rather than with them (Gray and Winter 2011a). This exclusion is even more evident in developing countries of the global south though with some rare exceptions (Kembhavi and Wirz, 2009; Singal, 2010; Wickenden and Kembhavi- Tam, 2014; Don et al, 2015; Nguyen et al, 2015). This paper reports on the ‘Voices of Pacific Children with Disability’ project (hereafter referred to as the Voices project) which, drawing on the broader field of child participatory research, developed a method for children with disability to competently provide evidence about their needs, aspirations and human rights priorities. Eighty-nine children with disability living in rural and urban areas of Vanuatu and Papua New Guinea (PNG) participated, using a suite of data collection ‘tools’ designed to support children to express their life priorities and human rights’ needs. In this paper we examine a sub-set of this data related to children’s future priorities, the primary one being employment, and explore the utility of such evidence for governments, NGOs and other stakeholders, in shaping policy and service delivery in line with the rights of children with disability. Such data is important when working in an evidence informed way as often these organisations have limited data on the needs and values of the groups they serve.

Fire setters with intellectual disability

This thesis provides important insights into the characteristics of persons with intellectual disability who set fires and synthesises the needs of this relatively small, but significant, subset of the community who have the potential to cause substantial harm to property, other people and themselves.

Audit report on the Peace Officers' Retirement, Accident and Disability System for the year ended June 30, 2016

Audit report on the Peace Officers' Retirement, Accident and Disability System for the year ended June 30, 2016

Report on the Peace Officers’ Retirement, Accident and Disability System, Schedule of Employer Pension Amounts for the year ended June 30, 2016

Report on the Peace Officers’ Retirement, Accident and Disability System, Schedule of Employer Pension Amounts for the year ended June 30, 2016

Distance Education in the Professionalization of People with Disability and Prison Inmates

This paper illustrates the impact of the Universidad Estatal a Distancia  (UNED, by its Spanish acronym) in supporting and professionalizing the vulnerable groups of the Costa Rican society, including prison inmates, persons with physical disability, individuals from remote areas, among others.  This study attempts to answer this type of questions: What kind of support has been provided to these sectors?  What are the challenges faced by distance education universities to succeed?  How does UNED have solved these challenges?  What is the impact of the Universidad Estatal a Distancia on the Costa Rican society for the professionalization of its population?  Documentation and statistics have been used in the study; in addition, two people who graduated from UNED were selected to illustrate the type of cases the University serves.(1) Translator’s note: It refers to the “Costa Rican Distance Education State University”.

Epistemological Views from Different Theoretical Perspectives of Disability

This paper provides theoretical perspectives and the corresponding epistemological approaches on the study of disabilities.  It explains diverse focuses to see disabilities from their different points of view; it also includes debates between those focuses. This paper contributes to a conceptual-theoretical clarification for the study and research on disabilities.