Family carers

Background: The ASCOT-Carer and Carer Experience Scale are instruments designed to capture aspects of quality of life 'beyond health' for family carers. The aim of this study was to compare and validate these two carer care-related measures, with a secondary aim to compare both instruments to the three-level EQ-5D (EQ-5D-3 L) measure of health-related quality of life.

Background: Substantial and important benefits flow to all stakeholders, including the service user, when mental health services meaningfully engage with carers and family members. Government policies around the world clearly supports inclusiveness however health service engagement with family and carers remains sporadic, possibly because how best to engage is unclear. A synthesis of currently used surveys, relevant research and audit tools indicates seven core ways that families and carers might be engaged by health services.

Objectives: To develop understanding of the lived experiences of children of people living with young onset dementia, defined as individuals both under and over the age of 18 years whose parent was diagnosed with dementia before the age of 65 years. Method: A critical appraisal and thematic synthesis of the available qualitative literature regarding the lived experience of individuals whose parent has a diagnosis of young onset dementia. A three-stage approach for conducing thematic synthesis was followed.

Background: The COVID-19 pandemic has led to the closure or reduction in support services for family carers, resulting in increased social isolation and stress for this population. Objectives: The current scoping review aimed to identify the impact of COVID-19 upon carers and support provided for them during the pandemic.

Background: People living with dementia account for a large proportion of deaths due to COVID-19. Family carers are faced with making significant and emotive decisions during the pandemic, including decisions about end of life. Objectives: We aimed to explore the challenges faced by family carers of people living with dementia during the first wave of the COVID-19 pandemic in England, as reported by charity telephone support line staff, who were able to objectively discuss a range of different experiences of many different carers who call the helpline.

Background: Family members as informal caregivers are considered the first line of support for people with dementia across the world. In Singapore, caregiving expectations revolve around the cultural expectations of providing care in the home environment. However, studies in Singapore have identified a lack of family support for primary caregivers. Family support has been discussed in the literature as the provision of care for people with dementia, and rarely as a resource for family caregivers.

Background: The term ‘care crisis’ is invoked to denote chronic system failures and bad outcomes for the people involved. Methods: We present a comprehensive wellbeing framework and illustrate its practicality with evidence of negative outcomes for those who provide care. Findings: We find evidence of substantial material and relational wellbeing failures for family carers and for care workers, while there has been little interest in carers’ views of their ability to live the life that they most value.

Objectives: This article explores a hidden and under-acknowledged dimension of caring in family life: when older people with care needs act in a harmful, abusive or violent way towards the family member(s) who cares for them. Methods: Thirty-eight health and social care professionals, working in the UK, took part in five focus groups to explore their experience of working with families in this situation.

Background: Informal carers provide an important role in supporting people with cancer. Aboriginal and Torres Strait Islander peoples experience higher cancer mortality than other Australians. To date, very little is known about the support needs of carers of Aboriginal and Torres Strait Islander adults with cancer. This article explored these needs through a qualitative study.

Objectives: Capture change in family members' experiences as they look after patients during chemotherapy, and understand variability in their needs for support. Methods: Longitudinal digitally-recorded qualitative semi-structured interviews with family carers at the beginning, mid-point, and end of treatment. Twenty-five family members (17 women, 8 men), mean age 53, were interviewed. Fifteen participants were supporting a relative having chemotherapy with curative intent, and 10 a patient receiving palliative chemotherapy.