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How and why should we engage parents as co‐researchers in health research? A scoping review of current practices

Background: The importance of engaging parents in health research as co‐researchers is gaining growing recognition. While a number of benefits of involving parents as co‐researchers have been proposed, guidelines on exactly how effective engagement can be achieved are lacking. The objectives of this scoping review were to (i) synthesize current evidence on engaging parents as co‐researchers in health research; (ii) identify the potential benefits and challenges of engaging parent co‐researchers; and (iii) identify gaps in the literature.

Thu, 01/05/2023 - 17:02

Governing families that care for a sick relative: the contributions of Donzelot’s theory for nursing

According to the literature, the family is now considered to be the most important resource for the care and support of a sick family member. Families are being increasingly invited and trained to play a utilitarian role, not just as family caregivers, but as healthcare agents. Healthcare institutions, based on neoliberal health policies, are encouraging them to perform increasingly complex and professionalized tasks. The burden associated with this expanded healthcare function, however, is significant (fatigue, emotional distress and exhaustion).

Wed, 06/01/2022 - 18:44

Empowerment of family caregiver in front of stroke in hospital environment

Objectives: to understand how the empowerment of family caregivers of people with stroke occurs in the hospital environment.; Methods: a qualitative research, participatory action research, articulated with Paulo Freire's Research Itinerary, developed in April 2018 with family caregivers, in a Stroke Unit.; Results: three predominant codes were coded: the need for empowerment and autonomy to experience the care situation; the challenges experienced in becoming a caregiver; and family support.

Sun, 11/29/2020 - 11:01

'Deferred or chickened out?' Decision making among male carers of people with dementia

In this paper, we present new insight into the ways in which carers of people with dementia make decisions in the context of seemingly declining autonomy and freedom associated with the condition. Our focus is on the ways in which carers reflect on decisions made in different temporal contexts (day-to-day, medium- and long term). Drawing on data and analysis from in-depth interviews with male informal carers of women with mild to moderate dementia living in the northwest of England, we outline how the decision-making process is dependent on the temporality of the decisions.

Thu, 07/20/2017 - 15:22

Service user and carer involvement: beyond good intentions

The increasing focus on the involvement of people who use health and social care services and their carers in developing services and in social work education has the potential to bring significant change. This book examines the challenges in enabling people who are `experts by experience' to participate in an agenda which is largely dominated by 'top-down' managerial practices. Several themes run through the book.

Thu, 07/20/2017 - 15:10