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Family Carers and Caring
Type: Book
ISBN: 978-1-80043-346-5

Abstract

Details

Family Carers and Caring
Type: Book
ISBN: 978-1-80043-346-5

Book part
Publication date: 3 January 2015

Samantha Abbato

A case study methodology was applied as a major component of a mixed-methods approach to the evaluation of a mobile dementia education and support service in the Bega Valley…

Abstract

A case study methodology was applied as a major component of a mixed-methods approach to the evaluation of a mobile dementia education and support service in the Bega Valley Shire, New South Wales, Australia. In-depth interviews with people with dementia (PWD), their carers, programme staff, family members and service providers and document analysis including analysis of client case notes and client database were used.

The strengths of the case study approach included: (i) simultaneous evaluation of programme process and worth, (ii) eliciting the theory of change and addressing the problem of attribution, (iii) demonstrating the impact of the programme on earlier steps identified along the causal pathway (iv) understanding the complexity of confounding factors, (v) eliciting the critical role of the social, cultural and political context, (vi) understanding the importance of influences contributing to differences in programme impact for different participants and (vii) providing insight into how programme participants experience the value of the programme including unintended benefits.

The broader case of the collective experience of dementia and as part of this experience, the impact of a mobile programme of support and education, in a predominately rural area grew from the investigation of the programme experience of ‘individual cases’ of carers and PWD. Investigation of living conditions, relationships, service interactions through observation and increased depth of interviews with service providers and family members would have provided valuable perspectives and thicker description of the case for increased understanding of the case and strength of the evaluation.

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Case Study Evaluation: Past, Present and Future Challenges
Type: Book
ISBN: 978-1-78441-064-3

Keywords

Book part
Publication date: 7 November 2017

Yihan Wang, Angela Abbott and Catherine Butcher

United Kingdom and China face both similar and dissimilar challenges in managing eldercare. These challenges are centred around demographic change, caregiving roles and care…

Abstract

United Kingdom and China face both similar and dissimilar challenges in managing eldercare. These challenges are centred around demographic change, caregiving roles and care facilities, work–family conflict and work flexibilities, employment rights, culture norms in caring for the elders and the welfare state. This chapter demonstrates the status quo of each of these challenges in managing eldercare, from both the East and West perspectives. Aside from the challenges, opportunities also emerge. More support services are needed for elders with activities of daily living (ADL) or instrumental activities of daily living. Institutional care is in great demand in China, despite the traditional value of caring for elders at home. Caring for elders with cognitive disabilities has also won attention. In the United Kingdom, elder caregiving issues are focused on older workforce, grandparent caregivers and long-term consequences of combining employment and care in the workplace. Compared to Hong Kong and United Kingdom, mainland China has more space to improve on adapting flexible work hours and promoting employment rights of workers. ‘Sandwich’ carers and women caregivers were given special attention in our discussion. At the end of the chapter, results from a survey studying older employees who are also caregivers were also presented.

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Managing the Ageing Workforce in the East and the West
Type: Book
ISBN: 978-1-78714-639-6

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Abstract

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Movies, Music and Memory
Type: Book
ISBN: 978-1-83909-199-5

Book part
Publication date: 24 November 2023

Kelly Norwood and Mary Webster

Research ethics and integrity stipulates that research must be conducted with responsibility towards the research community and should benefit the intended population. This…

Abstract

Research ethics and integrity stipulates that research must be conducted with responsibility towards the research community and should benefit the intended population. This chapter will share insights from an ongoing research programme to reduce family conflict in the context of dementia care while discussing the accompanying ethical considerations. Research into dementia care has primarily focused on improving outcomes for the care dyad, leaving the influence and input of the wider family unit under investigated. Family conflict can detrimentally impact the quality of care provided and leave caregivers vulnerable to psychosocial difficulties. Family conflict occurs in the context of dementia care but there is little research on how to reduce, or prevent, such conflict occurring. In this research programme, a systematic review investigated the effectiveness of interventions that include the wider family unit to reduce family conflict; only one study was included which evidenced the lack of interventions in this area. A qualitative scoping review was then conducted to explore the lived experiences of caregiving families with experience of family conflict and reported solutions. It was found that conflict occurred due to factors including care decisions and role transitions which impacted relationships and affected care provision. Solutions to conflict were less often reported, indicating an important gap in the literature. Interviews with Alzheimer's Society staff and volunteers revealed that stigma and denial surrounding dementia were prevalent, and families were often reluctant to seek external help. This research programme is currently establishing public patient involvement (PPI) to develop the research methodology and interview questions for people with dementia (PWD) and their family caregivers to explore their lived experiences and potential solutions to family conflict. To conclude, this research programme will propose a family-focused intervention aimed at systemic family conflict for those caring for someone with dementia.

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Ethics and Integrity in Research with Older People and Service Users
Type: Book
ISBN: 978-1-80455-422-7

Keywords

Book part
Publication date: 24 November 2023

Rahena Mossabir

Exploring subjective experiences of people living with dementia through qualitative research has become increasingly common in recent decades. Nonetheless, researchers have shared…

Abstract

Exploring subjective experiences of people living with dementia through qualitative research has become increasingly common in recent decades. Nonetheless, researchers have shared a number of ethical challenges in involving people living with dementia in research. A concept that has been influential in discussions about ethics within the field of dementia care, in particular, is person-centredness. A person-centred approach reflects values of respect for personhood and the rights of a person and of building mutual trust and understanding. This chapter presents my experience of adopting person-centred ethical practices in a sensory ethnographic study involving older adults living with dementia. I highlight person-centred ethical considerations at the design stage of my study and occasions during the conduct of my research when research methods and processes were adapted to further meet the needs of the participants. A person-centred approach required that I continually assessed the need to make ethical decisions in every aspect of the research process throughout its duration. Building and drawing on positive researcher–participant relationships to inform those decisions and an adaptable research design allowing research practices to be adapted in situ were therefore essential.

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Ethics and Integrity in Research with Older People and Service Users
Type: Book
ISBN: 978-1-80455-422-7

Keywords

Book part
Publication date: 9 November 2020

Nicki Pombier

Purpose: This chapter proposes narrative allyship across ability as a practice in which nondisabled researchers work with disabled nonresearchers to co-construct a process that…

Abstract

Purpose: This chapter proposes narrative allyship across ability as a practice in which nondisabled researchers work with disabled nonresearchers to co-construct a process that centers and acts on the knowledge contained in and expressed by the lived experience of the disabled nonresearchers. This chapter situates narrative allyship across ability in the landscape of other participatory research practices, with a particular focus on oral history as a social justice praxis.

Approach: In order to explore the potential of this practice, the author outlines and reflects on both the methodology of her oral history graduate thesis work, a narrative project with self-advocates with Down syndrome, and includes and analyzes reflections about narrative allyship from a self-advocate with Down syndrome.

Findings: The author proposes three guiding principles for research as narrative allyship across ability, namely that such research further the interests of narrators as the narrators define them, optimize the autonomy of narrators, and tell stories with, instead of about, narrators.

Implications: This chapter suggests the promise of research praxis as a form of allyship: redressing inequality by addressing power, acknowledging expertise in subjugated knowledges, and connecting research practices to desires for social change or political outcomes. The author models methods by which others might include in their research narrative work across ability and demonstrates the particular value of knowledge produced when researchers attend to the lived expertise of those with disabilities. The practice of narrative allyship across ability has the potential to bring a wide range of experiences and modes of expression into the domains of research, history, policy, and culture that would otherwise exclude them.

Book part
Publication date: 15 April 2020

Jacqueline Waldock and Sara Cohen

Working at the University of Liverpool alongside Julia Hallam and Lisa Shaw, and in the Department of Music, are Sara Cohen and Jacqueline Waldock. Both Sara and Jacky have led…

Abstract

Working at the University of Liverpool alongside Julia Hallam and Lisa Shaw, and in the Department of Music, are Sara Cohen and Jacqueline Waldock. Both Sara and Jacky have led projects that engage with and support local organizations and communities, and examine music from the perspective of those involved. In fact, it was their shared interest in how ‘ordinary’ people engage with and experience music in everyday life that prompted them to join forces in 2014, and start working together on community engagement projects. At the same time, they have brought to these projects their own individual research interests and expertise. In this chapter, we discuss their recent collaboration on a project that explores the use of music to improve the wellbeing of older people in the UK, including people living with a dementia-related cognitive impairment and in nursing homes and health-care settings, and those who live independently but are cared for at day-care centres run by voluntary and community-based organizations. We situate this project within a selection of UK music initiatives or ‘interventions’ aimed at helping those living with dementia and age-related memory loss, and outline how specific projects informed our own approach and work.

Details

Movies, Music and Memory
Type: Book
ISBN: 978-1-83909-199-5

Abstract

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Storytelling
Type: Book
ISBN: 978-1-83909-756-0

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