Bradford Scholars
Bradford Scholars is the University of Bradford online research archive. Access is free to anyone interested in research being conducted at Bradford. In the repository you will find a range of materials from journal articles and conference papers to research reports and theses.
Contact the repository team via openaccess@bradford.ac.uk with any queries about Open Access or how to deposit your research papers.
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Publication Living well with dementia: what is possible and how to promote it(2022-01)Key points: The focus on living well with dementia encourages a more positive and empowering approach. The right support can improve the experience of living with dementia. An holistic approach to assessing the needs of people with dementia and identifying the factors that impact on their well-being is essential. Enabling people to live better requires a broad approach that encompasses both health and social systems and the wider community.Publication Negotiating the caring role and carer identity over time: ‘living well’ and the longitudinal narratives of family members of people with dementia from the IDEAL cohort(2025)Longitudinal studies can provide insights into how family members negotiate the caring role and carer identity over time. The analyses of the longitudinal, qualitative interviews on ‘living well’ with dementia from the IDEAL cohort study aimed to identify the shifting, embedded narratives of family members of people with dementia as they negotiated the caring role and carer identity over time. Twenty semi-structured, qualitative interviews were conducted with family members of people with dementia and 14 were repeated one year later; these interviews were analysed using cross-sectional and longitudinal thematic and structural narrative analyses. Longitudinal, interrelated themes, including the care needs and decline of the person with dementia, relationship change and variable service support, framed the narrative types of family members. Six shifting narratives, apparent as dominant and secondary narrative types, characterized negotiating the caring role over time: absent/normalizing, active role adoption / carer identity, resistance, acceptance and resignation, hypervigilance/submergence and role entrapment, and foreshadowed future. The presence or absence of a carer identity was also evident from interviewees’ accounts, although, even where family members were overburdened by the caring role, they did not necessarily express a carer identity. Rather than considering transition into a carer identity, hearing different narratives within the caring role is important to understand how family members experience caring, whether they see themselves as ‘carers’, and when and how they need support. Timely and continued post-diagnostic support, where different caring narratives are recognized, is needed, as well as international initiatives for carer identification.Publication Differences in trajectories of quality of life according to type of dementia: 6-year longitudinal findings from the IDEAL programme(2024)Background People with different types of dementia may have distinct symptoms and experiences that affect their quality of life. This study investigated whether quality of life varied across types of dementia and over time. Methods The participants were 1555 people with mild-to-moderate dementia and 1327 carers from the IDEAL longitudinal cohort study, recruited from clinical services. As many as possible were followed for up to 6 years. Diagnoses included were Alzheimer’s disease, vascular dementia, mixed Alzheimer’s and vascular dementia, Parkinson’s disease dementia, dementia with Lewy bodies, and frontotemporal dementia. Self- and informant-rated versions of the Quality of Life in Alzheimer’s Disease scale were used. A joint model, incorporating a mixed effects model with random effects and a survival model to account for dropout, was used to examine whether quality of life varied by dementia type at the time of diagnosis and how trajectories changed over time. Results The strongest associations between dementia type and quality of life were seen around the time of diagnosis. For both self-ratings and informant ratings, people with Parkinson’s disease dementia or dementia with Lewy bodies had lower quality of life scores. Over time there was little change in self-rated scores across all dementia types (− 0.15 points per year). Informant-rated scores declined over time (− 1.63 points per year), with the greatest decline seen in ratings by informants for people with dementia with Lewy bodies (− 2.18 points per year). Conclusions Self-rated quality of life scores were relatively stable over time whilst informant ratings showed a steeper decline. People with Parkinson’s disease dementia or dementia with Lewy bodies report particularly low levels of quality of life, indicating the importance of greater attention to the needs of these groups.Publication Intersections between culture, sociodemographic change and caring: a qualitative study of current and prospective family caregivers in mainland China.(2022)Aim: As the ageing population in China increases, support required from family caregivers for older relatives living with long-term health conditions also increases. This being so, this thesis explored the experiences and perceptions of current and prospective family caregivers, under the culture of Xiao (孝; filial piety). Design and Methods: Phase 1 was conducted with 19 Chinese students using 3 focus groups to gain greater familiarity with the culture and inform the main study (Phase 2). Adopting a social constructivist philosophical position, data for Phase 2 were obtained from three generational sub-samples: only-children affected by the One-Child Policy (OCP), parents affected by OCP, and family caregivers in the workforce, totaling 23 participants through virtual in-depth interviews with participants in mainland China. Interviews were translated, transcribed, and analysed using reflective thematic analysis. Findings and Conclusion: Phase 1 confirmed the centrality of the concept of Xiao to attitudes and beliefs around future caregiving for parents. Phase 2 findings’ overarching theme was ‘Competing pressures’, which comprised of three inextricably linked themes: (i) Caregiving beliefs, (ii) Contextual factors, and (iii) Caregiving conditions. Participants expressed meaningful desires to fulfil obligations, reflecting value-based convictions, stemming from their socio-cultural environment. Stressors experienced reveals structural and personal barriers to seeking support. Ultimately, extensive demands and limited coping strategies could diminish meaning in caregiving. This thesis makes a novel contribution on perceptions and experiences of family caregivers of older relatives within China as a collectivist society. Findings have implications for research, policy, and practice, highlighting the need for culturally attuned services to build resilience.Publication Treaty on the Prohibition of Nuclear Weapons: Victim assistance and environmental remediation in the Pacific(Asia Pacific Leadership Network, 2024-05)This report provides insight into the benefits and challenges pertaining to victim assistance and environmental remediation in the wake of nuclear weapons testing in the Pacific. Nuclear weapons were tested by the United Kingdom (UK), the United States (US), and France across historical colonial and occupied commonwealth lands in the Pacific Ocean from 1946 until 1996.1 Australia, Republic of Kiribati, Marshall Islands, and French Polynesia were directly affected and experienced significant humanitarian and environmental consequences. Other nearby Pacific Island states, including Cook Islands, Fiji, and Solomon Islands were also impacted by the tests. While evidence of environmental and health effects exists, the total long-term consequences remain unknown. Nuclear weapons possessor states are reluctant to accept responsibility for harms and are unwilling to provide transparency around historical nuclear military activity. The Treaty on the Prohibition of Nuclear Weapons (TPNW) offers a path forward to understand the impacts of Pacific nuclear weapons testing and to support nation-states affected by these activities. Articles 6 and 7 of the Treaty provide a framework for addressing the humanitarian and environmental consequences and an avenue for international collaboration towards these ends. This report highlights the potential local and grassroots benefits of the Treaty to Pacific nations and recommends that Pasifika people are supported to engage with the decision-making process at every stage of its development and implementation. We recommend that mechanisms and safeguards are in place, including long-term support, monitoring, auditing, and education, to ensure access to support is equitable and fair. We recommend that Articles 6 and 7 are implemented through a lens of epistemic justice, which is justice of knowledge, and frameworks must be established to ensure parity of understanding among relevant Pacific communities, through translation of key materials into noncolonial languages and establishing community networks and mentors.