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Carer burden in rare inherited diseases: a literature review and conceptual model
BackgroundCarers of people living with rare diseases report heavy burden and a plethora of unmet needs. A previous parental supportive care needs...
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Do Informal Care Recipients Internalise Carer Burden? Examining the Impact of Informal Care Receipt on Health Behaviours
BackgroundProviding informal care has a negative effect on the caregiver’s health and well-being, but little is known about how individuals respond...
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Modelling Spillover Effects on Informal Carers: The Carer QALY Trap
The provision of informal (unpaid) care can impose significant ‘spillover effects’ on carers, and accounting for these effects is consistent with the...
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Living well while providing support: validation of LTCQ-Carer for assessing informal carers’ quality of life
PurposeDespite international policies to support the health and wellbeing of informal (family) caregivers, there is no consensus on how to evaluate...
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Community pharmacies as a place for informal carer support in mental health and wellbeing
There are 5.3 million informal carers in the United Kingdom who take on caring responsibilities for family and friends. Informal carers can be...
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Parent-carer experiences using a peer support network: a qualitative study
IntroductionParent-carers of children and young people (CYP) with mental health problems are at greater risk of poor outcomes, such as poor physical...
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Carer preparedness improved by providing a supportive educational intervention for carers of patients with high-grade glioma: RCT results
BackgroundHigh-grade glioma (HGG) is a rapidly progressing and debilitating disease. Family carers take on multiple responsibilities and experience...
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Validating interRAI Chinese self-reported carer needs (SCaN) assessment and predicting caregiving distress among informal Chinese caregivers of older adults
BackgroundThis study aims to (1) determine the reliability and validity of the interRAI Chinese Self-reported Carer Needs (SCaN) assessment among...
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Applying the RE-AIM framework to evaluate a holistic caregiver-centric hospital-to-home programme: a feasibility study on Carer Matters
BackgroundProlonged caregiving of an older adult can cause family caregivers to be overwhelmed, potentially affecting the well-being of both the...
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How well do the adult social care outcomes toolkit for carers, carer experience scale and care-related quality of life capture aspects of quality of life important to informal carers in Australia?
PurposeIdentify aspects of quality of life (QoL) important to Australian informal carers and explore how well the Adult Social Care Outcomes Toolkit...
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CELPI: trial protocol for a randomised controlled trial of a Carer End of Life Planning Intervention in people dying with dementia
BackgroundDementia is a leading cause of death in developed nations. Despite an often distressing and symptom laden end of life, there are systematic...
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Exploring carer resilience in the context of dementia: a meta-synthesis
AimsThe aim of this literature review is to integrate the results of qualitative research on the resilience experiences of family carers of people...
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Diagnostic properties of the Italian ECAS Carer Interview (ECAS-CI)
BackgroundThis study aimed at providing diagnostic properties and normative cut-offs for the Italian ECAS Carer Interview (ECAS-CI).
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Invisible experts: a systematic review & thematic synthesis of informal carer experiences of inpatient mental health care
BackgroundThe negative impact of caregiving on carers’ physical and psychological wellbeing is well documented. Carers of mental health inpatients...
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A comparative analysis of carer-employees in Canada over time: a cross-sectional analysis of Canada’s General Social Survey, 2012 and 2018
ObjectivesThe aims of the study are to identify trends in the socio-demographic, health, and work profiles of Canadian carer-employees (CEs) over...
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Dyadic relationship, carer role, and resources: a theory-driven thematic analysis of interviews with informal carers focusing on the stability of home-based care arrangements for people living with dementia
BackgroundMost people with dementia live at home and are supported by informal carers. During the care trajectory, the creation of a stable care...
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A systematic review of the impact of carer interventions on outcomes for patients with eating disorders
PurposeEating disorder (ED) prevalence and illness severity is rapidly increasing. The complicated interplay of factors contributing to the...
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Tackling the escalating burden of care in Uganda: a qualitative exploration of the challenges experienced by family carers of patients with chronic non-communicable diseases
BackgroundFamily carers face challenges that could significantly affect their health and the health of those they care for. However, these challenges...
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Measuring carer quality of life in Duchenne muscular dystrophy: a systematic review of the reliability and validity of self-report instruments using COSMIN
IntroductionDuchenne muscular dystrophy is a rare, progressive, life-limiting genetic neuromuscular condition that significantly impacts the quality...
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A balance between putting on the researcher’s hat and being a fellow human being: a researcher perspective on informal carer involvement in health and social care research
BackgroundPublic involvement in health and social care research is increasingly prioritized by policy-makers and research funders. Often, the impact...