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“I have to be both mother and father”: The impact of Young-onset dementia on the partner’s parenting and the children’s experience

There has been increasing research on the experience and needs of caregivers for persons with YOD, who are mainly spouses. Yet one little-explored area is their evolving parental role. As the person with YOD becomes less able to parent, the partner must take on more and more parental responsibilities. This occurs in much-changed familial context, with children often asked to assume caretaking roles and experiencing strong feelings such as grief, anger, and fear.

Mon, 07/27/2020 - 13:06

Children with ill parents: extent and nature of caring activities

Rationale Previous studies have shown that children may take on higher extents of caring activities if their parents are affected by severe illness or disability, especially when their parents lack access to formal and informal care. Aims and objectives This study examined the extent and nature of caring activities done by patients’ children; differences in caring activities between different types of parental illness; factors associated with caring activities. Design An explorative cross‐sectional multicentre study.

Mon, 04/01/2019 - 14:56

Family Matters: Counting Families In

This report seeks to highlight the perspectives of family carers within the development of a national strategy for people with learning disabilities. The report represents a synthesis of a broad range of views, collected through consultation workshops, correspondence, conversations with family carers, and a review of the relevant  literature. 

Mon, 09/10/2018 - 17:51

Older people from white-British and Asian-Indian backgrounds and their expectations for support from their children

The importance of ties between older people and their children has been widely documented as a fundamental component in the provision and receipt of support. While the reference to such support is usually made in a benign manner, it is overly simplistic to assume that support provided by family members will always and necessarily lead to positive outcomes for older people. A person's perception of the adequacy or quality of support is inevitably influenced by his or her expectation of the type, frequency and source of support preferred or required.

Thu, 07/20/2017 - 15:24

Children caring for parents with mental illness: perspectives of young carers, parents and professionals

Book Description: Little is known about the experiences of children living in families affected by severe and enduring mental illness. This is the first in-depth study of children and young people caring for parents affected in this way. Drawing on primary research data collected from 40 families, the book presents the perspectives of children (young carers), their parents and the key professionals in contact with them.

Thu, 07/20/2017 - 15:24

Services, but at a price

The Carers and Disabled Children’s Act 2000 promises carers flexibility. But flexibility comes at a cost - local authorities will be charging for carers’ services, writes Gideon Burrows.

Thu, 07/20/2017 - 15:24

Young caregivers in the end-of-life setting: a population-based profile of an emerging group

Purpose: Little is known about young caregivers of people with advanced life-limiting illness. Better understanding of the needs and characteristics of these young caregivers can inform development of palliative care and other support services.

Thu, 07/20/2017 - 15:23

Global Perspective on Children's Unpaid Caregiving in the Family

This article provides the first cross-national review and synthesis of available statistical and research evidence from three developed countries, the UK, Australia and the USA, and from sub-Saharan Africa, on children who provide substantial, regular or significant unpaid care to other family members (‘young carers/caregivers’). It uses the issue of young carers as a window on the formulation and delivery of social policy in a global context.

Thu, 07/20/2017 - 15:21

Confirmatory Factor Analysis and Invariance Testing of the Young Carer of Parents Inventory (YCOPI)

Objective: Research into youth caregiving in families where a parent experiences a significant medical condition has been hampered by a lack of contextually sensitive measures of the nature and breadth of young caregiving experiences. This study examined the factor structure and measurement invariance of such a measure called the Young Carer of Parents Inventory (YCOPI; Pakenham et al., 2006) using confirmatory factor analysis across 3 groups of youth.

Thu, 07/20/2017 - 15:21

Care by spouses, care by children : projections of informal care for older people in England to 2031

The future market costs of long-term care for older people will be affected by the extent of informal care. This paper reports on projections of receipt of informal care by disabled older people from their spouses and (adult) children to 2031 in England. The paper shows that, over the next 30 years, care by spouses is likely to increase substantially. However, if current patterns of care remain the same, care by children will also need to increase by nearly 60 per cent by 2031. It is not clear that the supply of care by children will rise to meet this demand. 

Thu, 07/20/2017 - 15:20