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Repertoires of responsiblity for diabetes management by adults with intellectual disabilities and those who support them

Background: The limited existing research on diabetes management and intellectual disabilities (ID) highlights the need for further exploration of the concept of responsibility. This study explored repertoires of responsibility in accounts of managing diabetes for adults with ID. Methods: Fourteen semi-structured interviews were conducted in the UK with 7 adults with mild/moderate ID and type 1 or 2 diabetes and 7 people who they nominated as supporting their diabetes management.

Wed, 06/08/2022 - 14:08

The caregiving bind: Concealing the demands of informal care can undermine the caregiving identity

Disagreements and misunderstandings between informal caregivers and care-receivers have been widely reported, but the causes are unclear. The present article compares the views of people with acquired brain injury and their main informal caregivers (28 dyads, n = 56). First, we report a quantitative analysis finding that the majority of disagreements were about caregivers' identity. Caregivers saw themselves as less confident, less intelligent, more embarrassed, more independent and more overprotective than care-receivers rated them to be.

Tue, 06/15/2021 - 15:22

Identity, relationship quality, and subjective burden in caregivers of persons with dementia

The aim of the current study was to examine the associations between informal caregivers' perception of identity change in their care-partner, the quality of the caregiver/care-recipient relationship, and caregiver burden in a sample of 56 informal caregivers of persons with dementia. Most (96.4%) of the caregivers of persons who received a dementia diagnosis reported a perceived change in the identity of their care-partner.

Fri, 12/11/2020 - 09:42

Narrative Recording as Relational Practice in Social Services: A Case Study from a Scottish Carer Support Organisation

Narrative recording in case records and individual plans within social services represents the means by which stories can be constructed with and about the people with whom services work, influencing relationship building and outcomes. Identities and decision-making are forged in records, shaping people’s lives. Yet, limited attention is paid to narrative recording in research and practice. Indeed, recording, which increasingly veers towards ‘box-ticking’, is viewed by practitioners as a bureaucratic burden, limiting time for the ‘real job’ of face-to-face work.

Fri, 11/22/2019 - 17:34

Moving beyond the first response phenomenon: Exploring carers’ views and experiences of being involved in research and development work

Purpose: In Sweden, the care of older people and people with disabilities is increasingly carried out by informal carers, often family members, who are unpaid and outside a professional or formal framework. While there is an increasing awareness of the role of carers within service systems and their own needs for support, their involvement in research is underexplored. The purpose of this paper is to explore carers’ views and experiences of involvement in research and development (R&D) work.

Mon, 10/14/2019 - 11:17

Dyadic construction of dementia: meta-ethnography and behaviour-process synthesis

Objectives: Good interaction with family caregivers helps maintain positive identity in people with dementia. However, research in this area is limited. We aimed to systematically review the dyadic experience of dementia caring. Method: We searched on five databases: MedLine, EMBASE, PsycInfo, ASSIA, and CINAHL. Eligible studies employed qualitative or mixed method design, reported the experience of dyads of dementia with no comorbid organic or psychiatric disorders. No restrictions were made on language, year of publication, sex or age of participants.

Mon, 09/09/2019 - 11:10

We Are Caregivers: Social Identity Is Associated with Lower Perceived Stress among Rural Informal Caregivers

Informal caregivers often experience high stress levels with little support, especially in rural settings. With a mixed-methods approach, this research explored experiences of rural informal caregivers, including how social identification as a caregiver, social interactions, and formal and informal coping support related to perceived stress. Major focus group themes (n = 8) included lacking available services, balancing challenges, unmet practical needs, and strong community identity.

Mon, 06/10/2019 - 14:04

'Special Mothers' in Ireland: Gender, Identity and The Social Construction of Caring for a Relative With an Intellectual Disability

Gender balance in caring is heavily skewed towards women providing the majority of care. This is particularly evident in literature relating to intellectual disability. Using the platforms of mothering and disability to examine the literature, this article sheds light on the cultural norms and societal discourses that influence 'who cares' for children and adults with disabilities. It highlights that 'who cares' is often a socially constructed ideology that results in a reconstructed identity for women.

Thu, 05/23/2019 - 16:01

Carers' Experiences of End-of-Life Care: A Scoping Review and Application of Personal Construct Psychology

Objective: Individuals who care for a family member or friend at end‐of‐life experience a range of practical and emotional challenges. This paper applies a theoretical framework of personal construct psychology (PCP) to explore carers’ experiences of end‐of‐life care, with a focus on implications for their sense of identity. 

Thu, 03/07/2019 - 12:33

The experiences of young carers: a meta-synthesis of qualitative findings

The aim of this meta-synthesis was to explore young carers' accounts of caring for a family member with an illness, difficulty or disability, and to promote a phenomenological understanding of their experiences. A meta-ethnographic method of meta-synthesis was adopted, utilising the process of reciprocal translation to synthesise 11 qualitative studies. The synthesis yielded four main concepts: (1) becoming a caring person; (2) the adult child - the marks of being different; (3) who is a carer?

Thu, 07/20/2017 - 15:22

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