Search results

1 – 10 of 130

Abstract

Details

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

Book part
Publication date: 1 January 2008

Thomasina Borkman and Carol Munn-Giddings

Purpose – This research considers how self-help groups (SHGs) and self-help organizations (SHOs) contribute to consumerist trends in two different societies: United States and…

Abstract

Purpose – This research considers how self-help groups (SHGs) and self-help organizations (SHOs) contribute to consumerist trends in two different societies: United States and United Kingdom. How do the health care systems and the voluntary sectors affect the kinds of social changes that SHGs/SHOs make?

Methodology/approach – A review of research on the role of SHGs/SHOs in contributing to national health social movements in the UK and US was made. Case studies of the UK and the US compare the characteristics of their health care systems and their voluntary sector. Research reviews of two community level self-help groups in each country describe the kinds of social changes they made.

Findings – The research review verified that SHGs/SHOs contribute to national level health social movements for patient consumerism. The case studies showed that community level SHGs/SHOs successfully made the same social changes but on a smaller scale as the national movements, and the health care system affects the kinds of community changes made.

Research limitations – A limited number of SHGs/SHOs within only two societies were studied. Additional SHGs/SHOs within a variety of societies need to be studied.

Originality/value of chapter – Community SHGs/SHOs are often trivialized by social scientists as just inward-oriented support groups, but this chapter shows that local groups contribute to patient consumerism and social changes but in ways that depend on the kind of health care system and societal context.

Details

Patients, Consumers and Civil Society
Type: Book
ISBN: 978-1-84855-215-9

Book part
Publication date: 7 July 2022

Matthew Bennett and Emma Goodall

This chapter outlines several approaches that researchers can use to help them conduct research that respects and includes autistic participants. It begins by highlighting some of…

Abstract

This chapter outlines several approaches that researchers can use to help them conduct research that respects and includes autistic participants. It begins by highlighting some of the factors that should be considered before, during and after a study is conducted. It then explains some of the benefits and drawbacks of harvesting data from social media. It then concludes with a set of recommendations about inclusive research practices that can help autistic participants be equals in the research process.

The original contribution that this chapter gives to the field of autism spectrum research is to provide researchers with a clear and comprehensive outline of how to conduct research that is inclusive and respectful of autistic participants.

Details

Addressing Underserved Populations in Autism Spectrum Research
Type: Book
ISBN: 978-1-80382-463-5

Keywords

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.

Details

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

Keywords

Abstract

Details

Take Care
Type: Book
ISBN: 978-1-78714-292-3

Abstract

Details

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

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.

Details

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

Keywords

Abstract

Details

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

Book part
Publication date: 8 June 2020

Dawn Edge, Amy Degnan and Sonya Rafiq

Several decades of mental health research in the UK repeatedly report that people of African-Caribbean origin are more likely than other ethnic minorities, including the White…

Abstract

Several decades of mental health research in the UK repeatedly report that people of African-Caribbean origin are more likely than other ethnic minorities, including the White majority, to be diagnosed with schizophrenia and related psychoses. Race-based inequalities in mental healthcare persist despite numerous initiatives such as the UK’s ‘Delivering Race Equality’ policy, which sought to reduce the fear of mainstream services and promote more timely access to care. Community-level engagement with members of African-Caribbean communities highlighted the need to develop culturally relevant psychosocial treatments. Family Intervention (FI) is a ‘talking treatment’ with a strong evidence-base for clinical-effectiveness in the management of psychoses. Benefits of FI include improved self-care, problem-solving and coping for both service users and carers, reducing the risk of relapse and re-hospitalisation. Working collaboratively with African-Caribbeans as ‘experts-by-experience’ enabled co-production, implementation and evaluation of Culturally adapted Family Intervention (CaFI). Our findings suggests that a community frequently labelled ‘hard-to-reach’ can be highly motivated to engage in solutions-focussed research to improve engagement, experiences and outcomes in mental health. This underscores the UK’s Mental Health Task Force’s message that ‘new ways of working’ are required to reduce the inequalities faced by African-Caribbeans and other marginalised groups in accessing mental healthcare. Although conducted in the UK (a high-income multi-cultural country), co-production of more culturally appropriate psychosocial interventions may have wider implications in the global health context. Interventions like CaFI could, for example, contribute to reducing the 75% ‘mental health gap’ between High and Low-and-Middle-Income counties reported by the World Health Organization.

Details

The International Handbook of Black Community Mental Health
Type: Book
ISBN: 978-1-83909-965-6

Book part
Publication date: 24 November 2023

Peter Bates and Andy Willis

Science is too important to be left solely to scientists, and so the public need to be involved in the design, funding, delivery and implementation of health research, and in…

Abstract

Science is too important to be left solely to scientists, and so the public need to be involved in the design, funding, delivery and implementation of health research, and in discussions about the ethics of research. Since the 1960s, the United Kingdom and many other countries have included scientists from outside health care in various roles in health care research, as well as nonscientists, ordinary citizens, patients and carers. In the last 20 years, these roles have increased in number and range, but significant challenges remain in ensuring that research is always conducted in an ethical fashion. Errors arise when it is assumed that research is ethical because it has passed a single test rather than being subject to constant vigilance; when academic training on its own is regarded as sufficient to guarantee ethical conduct; when pontification about sophisticated dilemmas ignores fundamental matters of equity and helpfulness and when there is an absence of curiosity about the value positions of others (Boaz et al., 2016). We argue in this chapter that in every setting, citizens have the potential to contribute to ethical debates, whether they assist in establishing priorities for research funding, serve as research funding co-applicants, take the lay member places on Research Ethics Committees and Steering Committees, collect and analyze data or co-author academic papers.

Details

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

Keywords

1 – 10 of 130