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Research methods

Promoting participation of people with dementia in research

Dementia is a neurodegenerative disorder that can have a severe effect on the quality of life of individuals with the condition, and can place considerable strain on informal carers and healthcare systems. Research is required to identify ways to prevent or delay the onset of dementia. The government is committed to dementia research, yet funding for dementia research is eclipsed by funding for research into other conditions. Moreover, dementia research can only progress if individuals with the condition participate in research studies.

Thu, 07/20/2017 - 15:24

Rasch analysis of the Hospital Anxiety and Depression Scale among caregivers of cancer survivors: implications for its use in psycho-oncology

Objective: The Hospital Anxiety and Depression Scale (HADS) is often used to screen for cancer caregivers' anxiety and depression, despite few studies examining the tool's psychometric performance within this population. The purpose of this article is to use Rasch analysis to assess the psychometric properties of the HADS in a sample of cancer caregivers.

Methods: HADS was administered to 541 caregivers of a population-based sample of patients diagnosed with one of the eight most incident cancers in Australia. Rasch analysis was conducted using RUMM2020.

Thu, 07/20/2017 - 15:23

Towards a more inclusive vision of dementia care practice and research

Drawing on recent literature this article explores the development of research with family carers and people with dementia and identifies a number of themes that have emerged over time. It raises fundamental questions about the nature and purpose of research and the balance of power between researchers, family carers and people with dementia. Existing notions of expertise and knowledge are called into question and the article concludes with a call for a more empowering and inclusive model of research and practice based upon a relationship-centred approach to care.

Thu, 07/20/2017 - 15:23

Impact on the individual: what do patients and carers gain, lose and expect from being involved in research?

Background: Study feasibility and deliverability can benefit from involving patients and carers in the research process, known as patient and public involvement (PPI). There is less evidence on the experiences of patients and carers themselves and we require more information across a range of studies, health conditions and research stages.

Aims: This study explored how patients and carers in eight diagnostic research specialties have been involved in research, their motivations and the impact involvement had on them.

Thu, 07/20/2017 - 15:22

Service user and carer involvement in mental health education, training and research - a literature review

As part of an evaluation of service users’ and carers’ experience of involvement in mental health education, training and research, an extended literature review was undertaken. The purpose of this was to review policy underpinning service user and carer involvement in those areas, identify the extent and range of involvement, the processes involved, and the extent to which the effectiveness and impact of involvement had been evaluated. The review found that there was a range of different ways in which people were involved.

Thu, 07/20/2017 - 15:20

Development and psychometric properties of the Glasgow Depression Scale for people with a learning disability

Background There is no reliable and valid self-report measure of depressive symptoms for people with learning disabilities. Aims To develop a scale for individuals with learning disability, and a supplementary scale for carers. Method Items were generated from a range of assessment scales and through focus groups. A draft scale was piloted and field tested using matched groups of people with or without depression, and their carers.

Thu, 07/20/2017 - 15:19

Messages for integration from working with carers

Purpose – The purpose of this paper is to explore the role of carers as coordinators of care in their own right. It outlines how statutory and voluntary agencies can work together to support carers in this role, yet also help them work towards personal outcomes to sustain their own quality of life. It also proposes that approaches to working with carers can reveal lessons for integration.

Thu, 07/20/2017 - 15:19

Meaning from methods: re-presenting narratives of an HIV-affected caregiver

This article outlines the methodological process followed in examining a portion of an interview in which an older woman tells of two incidents where she felt effects of associative HIV-related stigma. Through the process of applying different techniques of narrative analysis, the author learned research methods and deepened interpretations of the text. Data management techniques both reflect assumptions and augment understanding. In narrative analysis, the structural whole can best be understood by first examining the architectural detail.

Thu, 07/20/2017 - 15:18

Making it work: service users and professionals as research partners

Capital is a user‐led training, consultancy and research organisation based in West Sussex. When the local mental health trust decided to evaluate its assertive outreach team, Capital bid to conduct a qualitative review through one‐to‐one interviews with the team's clients and their carers. In this candid article the project team members describe the process, the hurdles and obstacles they encountered, how they were negotiated or overcome, and what they learned from the experience.

Thu, 07/20/2017 - 15:17

Consumer voices steer the course of research

Describes how the Lancashire Dementia Research Group (LADRIG) has given people with dementia and their carers an active role in the development of research projects.

Thu, 07/20/2017 - 15:16

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