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Participatory research

Revealing the Invisible Emotion Work of Caregivers: A Photovoice Exploration of Informal Care Provided by Family Caregivers for Post-9/11 Veterans With Traumatic Brain Injuries

Objective: Describe the different forms of emotion work performed by family caregivers of veterans living with a traumatic brain injury (TBI). Design: Collaborators were provided cameras to take photographs illustrating their experiences as family caregivers. The meaning behind caregiver photographs was solicited using photoelicitation interviews and coded.

Sat, 06/18/2022 - 14:56

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

Family voices: life for family carers of people with intellectual disabilities in Ireland

Background: Families in Ireland remain the main providers of support for people with Intellectual disabilities, and the aim of this study was to map their life experiences whilst involving their family members as co-researchers.

Materials and Method: This qualitative, participatory study involved 10 focus groups attended by 70 parents and siblings of people with intellectual disabilities. Data were analysed using thematic analysis.

Thu, 07/20/2017 - 15:18

Developing partnerships for research: training workshops for mental health service users, carers and workers

AIMS AND METHOD: We aimed to introduce mental health service users, carers and workers to working as research partners with an academic unit, and provide training to facilitate participation. We achieved this by running workshops covering different stages of the research process.

RESULTS: Service users, carers and workers attended the workshops, although carers were underrepresented. Feedback was generally positive, and some participants have since become involved as researchers with projects at the Academic Unit.

Thu, 07/20/2017 - 15:17

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

Building on carers' stories to enrich research: lessons from a recent study

This paper provides an account of how family carers were involved in a longitudinal research study that aimed to investigate the needs of ‘new’ family carers of stroke survivors. An account of how the researcher involved carers is provided, followed by one carer's description of the benefits and negative consequences of being involved in the study. Suggestions are made about how to develop good practice with regard to involving people in research. The conclusions highlight that, although rewarding, being involved in research is not without its challenges.

Thu, 07/20/2017 - 15:16

Experience of mental health recovery and the service user researcher

The author, a service user with schizophrenia,  discusses how she can utilize her position and produce research that is acceptable, reliable, and credible. She discusses this in relation to a research proposal to examine the role of the carer in the recovery process of people with schizophrenia.

Thu, 07/20/2017 - 15:12

Experiences of 'care' in mental health

The concept of care has attracted considerable interest and there has been growing attention both to the needs of carers and how they may sometimes conflict with those of service users. Draws on initial research findings to examine experiences of care in mental health for men and women and for carers and users.

Thu, 07/20/2017 - 15:10