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    Flourishing together: research protocol for developing methods to better include disabled people's knowledge in health policy development
    (BioMed Central Ltd, 2022-12) Martin RA; Baker AP; Smiler K; Middleton L; Hay-Smith J; Kayes N; Grace C; Apiata TAM; Nunnerley JL; Brown AE
    BACKGROUND: To positively impact the social determinants of health, disabled people need to contribute to policy planning and programme development. However, they report barriers to engaging meaningfully in consultation processes. Additionally, their recommendations may not be articulated in ways that policy planners can readily use. This gap contributes to health outcome inequities. Participatory co-production methods have the potential to improve policy responsiveness. This research will use innovative methods to generate tools for co-producing knowledge in health-related policy areas, empowering disabled people to articulate experience, expertise and insights promoting equitable health policy and programme development within Aotearoa New Zealand. To develop these methods, as an exemplar, we will partner with both tāngata whaikaha Māori and disabled people to co-produce policy recommendations around housing and home (kāinga)-developing a nuanced understanding of the contexts in which disabled people can access and maintain kāinga meeting their needs and aspirations. METHODS: Participatory co-production methods with disabled people, embedded within a realist methodological approach, will develop theories on how best to co-produce and effectively articulate knowledge to address equitable health-related policy and programme development-considering what works for whom under what conditions. Theory-building workshops (Phase 1) and qualitative surveys (Phase 2) will explore contexts and resources (i.e., at individual, social and environmental levels) supporting them to access and maintain kāinga that best meets their needs and aspirations. In Phase 3, a realist review with embedded co-production workshops will synthesise evidence and co-produce knowledge from published literature and non-published reports. Finally, in Phase 4, co-produced knowledge from all phases will be synthesised to develop two key research outputs: housing policy recommendations and innovative co-production methods and tools empowering disabled people to create, synthesise and articulate knowledge to planners of health-related policy. DISCUSSION: This research will develop participatory co-production methods and tools to support future creation, synthesis and articulation of the knowledge and experiences of disabled people, contributing to policies that positively impact their social determinants of health.
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    Disabled people's experiences accessing healthcare services during the COVID-19 pandemic: a scoping review.
    (BioMed Central, 2023-04-06) McBride-Henry K; Nazari Orakani S; Good G; Roguski M; Officer TN
    BACKGROUND: Disruptions to healthcare services during the COVID-19 pandemic are well-recognised problems. However, a dearth of research exists on disabled people's experiences with accessing these services. A scoping review was undertaken to identify and explore research on the experience of disabled people in accessing healthcare services between 2020 and 6 February 2023. METHODS: PubMed, Web of Science, CINAHL, and OVID were employed to search for research that included the voice of disabled people, or their parents or caregivers. Over two distinct phases, a total of 2,201 articles were reviewed according to article titles, keywords, and abstracts. Eighty-one studies were identified that met the inclusion criteria; these were reviewed in full. RESULTS: Eighteen studies specifically described the experiences of accessing healthcare or disability services, and sixty-three raised healthcare challenges as a secondary consideration. Many disabled people struggled to access healthcare services and felt they were invisible; as a result, individuals' mental health was negatively affected. Disabled people with compounding vulnerabilities were at the most risk of experiencing a lack of healthcare access. CONCLUSIONS: There is an urgent need for research and policy that is responsive to disabled people's access to healthcare during the pandemic; currently many health policies are 'disability-blind' and exclude these members of the global community. Furthermore, to assist in creating disability-responsive research, funding needs to prioritise researchers within the disabled community.
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    An investigation of the stability of the sense of coherence for those attending a three-week rehabilitation programme : a thesis in partial fulfilment of the requirements for the degree of Masters of Arts in Rehabilitation at Massey University, Palmerston North, New Zealand
    (Massey University. School of Health Sciences, 2005) Hocquard, Toni Jacqueline
    Those with chronic illnesses or disabilities face numerous obstacles and issues as they come to terms with and manage the realities of their situation. How well health care providers and funders understand this can determine the types and quality of services offered. Antonovsky (1993) has developed the Sense of Coherence (SOC) concept, which introduces a salutogenic (health promotion) model of health. This challenges the pathogenic model (origins of disease) that dominates health care. A relationship between the SOC and coping has been established in the literature. Currently, the SOC is widely viewed as a stable personality trait, but emerging evidence suggests that the SOC may be amenable to change. The purpose of the study was essentially to investigate the stability of the SOC in relation to an intervention over time. The study was conducted using a time series design (Pre-admission (T1), admission(T2), discharge (T3), 6-month follow up(T4)). A convenience sample of 120 participants (93 women, 27 men) was recruited for the study. The instruments used as dependant measures were the SOC-29, the Acceptance of Disability Scale ADM (modified) and the SF-36. Analysis of the SOC-29 revealed a significant change over time (p= .05), with the follow up analysis indicating that this change occurred following the intervention. This same finding was also true of the ADM scores (p=0.0005). This was not sustained at 6-month follow up for either the SOC or the ADM. Analyses of the SF-36 scores showed a significant improvement from admission to the 6-month follow up on all scores except general health. Only 72 participants completed at the 6-month follow up and this reduced the power of the study to yield a statistically significant result. Furthermore, a post-hoc analysis revealed that over 93% of the participants had medium to high SOC scores at the beginning of the study and this may have impacted on the outcome. There were significant correlations between the scores on the SOC-29 and the ADM and all scales of the SF-36 except physical function. As the significant change in SOC-29 scores was not sustained at the six-month follow up it could suggest that the SOC is indeed a stable trait. However, there were other factors identified, related to the characteristics of the sample and to wider factors that could have had an impact on the outcome of this study. In particular it is possible that a 3-week programme is not long enough to effect a lasting change in the SOC and this raises questions about health care delivery for those who have chronic illness or disability.
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    What it means to be online for people with disabilities : a thesis presented in partial fulfilment of the requirements for the degree of Doctor of Philosophy in Psychology at Massey University, Palmerston North, New Zealand
    (Massey University. School of Psychology, 2003) Bowker, Natilene Irain
    People with disabilities have traditionally occupied stigmatised identities due to less conventional ways of operating in daily life. The online medium with its absence of visible identity markers, which have typically determined how a person is read offline, combined with the constructive potential embedded within a largely textual medium, potentially, bring together greater control and flexibility in identity construction. The online medium, therefore, may offer social benefits to people with disabilities that are not available in other contexts. This research discursively explores what kinds of experiences are available for people with disabilities online. It argues that the online medium offers alternative subjectivities for positioning people with disabilities in the social world. Discursive findings, however, also show that operating online within a disabled identity creates marginalised experiences.Discourse analysis, underpinned by a social constructionist philosophy, which emphasises the constructive nature of language in creating experience, is utilised as a methodology for gathering and analysing data. I have adopted Gilbert and Mulkay's (1984) concept of an 'interpretative repertoire' to manage the construction of discursive patterns identified in the data. Semi-structured interviews with 21 people with physical and sensory disabilities, who used the online medium daily, or several times per week, were carried out. Participants were recruited from various disability organisations in New Zealand and were invited to take part in an online interview via email, or another online communication program of their choice. Participants were met in person prior to the interviews to confirm the researcher's credibility and to build rapport.Seven key repertoires were identified in the data, with each one organised around several discursive resources. A choice to disclose repertoire allows disability to become a flexible feature of identity to be revealed and/or concealed in a contextualised and occasioned fashion. The accessing a socially valued subjectivity repertoire enables people with disabilities to position themselves as valued members of the social world, free of the physical and psychological barriers constructed by others that surround disabled identities. A transcendence repertoire functions in the talk of people with disabilities by surpassing the physical, social, and psychological limitations arising from having to operate within a disabled body, allowing far greater capacity for participation. A participating in the world repertoire affords people with disabilities the opportunity to be part of a wider community of relationships, people, interests, activities, and information, creating a sense of global belonging and connection. The keeping safe and qualified deception repertoires, together, enable people with disabilities to successfully manage the dilemma of participating in a medium where there is potential for substantial self-gain as well as harm. In contrast to the repertoires available for experiencing alternative subjectivities, which operate outside the oppression of disabled identities, a disabling differentials repertoire demonstrates the social disadvantages surrounding disabled identities online. Discursive findings are discussed in relation to disembodiment, as the online medium enables abilities to extend beyond the body, lifting the ceiling on standard ways of operating. This opens up psychological benefits as people with disabilities are afforded opportunities to access and participate within many dimensions of social life. At a collective level, political implications associated with the absence online of disabled identities are raised. Issues of technopower are also mentioned, along with future research directions. Overall, participants' constructions demonstrate how the online medium makes available a social space where people with disabilities can temporarily step outside the physical, social, and psychological constraints of operating within disabled subjectivities. This was cherished and celebrated.