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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

Care, poverty and coronavirus across Britain

Carers, paid and unpaid, are at the forefront of our response to the Coronavirus, putting themselves at risk to protect us all. Yet, if you are a carer, for adults or children, you are more likely to be living in poverty. This is not right.

This briefing note updates our Make Care Count report which focuses on the link between care and poverty before the crisis. It describes carers’ experiences of the pandemic, prioritising the voices of carers throughout, before detailing how we can take the first steps towards ending poverty for carers in Britain.

Tue, 07/14/2020 - 13:16

Social Participation and Health Outcomes Among Caregivers and Noncaregivers in Great Britain

This study investigates the relationship between social participation and health outcomes between caregivers and noncaregivers in Great Britain. Previous studies indicate that the impact of informal caregiving on the carer's health is complex, and the intensity of care provision has an adverse impact on the caregivers' health, while social participation could have a protective role in this respect.

Mon, 02/03/2020 - 11:16

Six mechanisms behind carer wellbeing effects: A qualitative study of healthcare delivery

Health and care services for patients may improve or harm the wellbeing of their family carers. Formal consideration of these effects (also known as spillovers) in decision-making is advocated, but, to date, little is known about how they occur. This paper presents the first empirical study to determine the mechanisms by which health and care services affect family carers' wellbeing. The study focused on three major health conditions: dementia, stroke, and mental health.

Fri, 09/06/2019 - 14:20

Love and incomprehensibility: The hermeneutic labour of caring for and understanding a loved one with psychosis

Informal carers are increasingly involved in supporting people with severe and enduring mental health problems, and carers' perceptions impact the wellbeing of both parties. However, there is little research on how carers actually make sense of what their loved one is experiencing. Ten carers were interviewed about how they understood a loved one's psychosis. Data were analysed using a hermeneutic-phenomenological approach. Three themes described the carers' effortful quest to understand their loved one's experiences while maintaining their relational bonds.

Tue, 06/25/2019 - 11:56

Advanced heart failure: impact on older patients and informal carers

Aim.  This paper reports a study exploring the impact of advanced heart failure on the lives of older patients and their informal carers.

Background.  Prognosis is poor in heart failure, with more than a third of patients dying within 12 months of diagnosis, and end-of-life symptoms are distressing and poorly controlled. Although end-of-life care for people with heart failure has received increased attention in recent years, there are still few data on the impact of advanced heart failure on the lives of patients and their informal carers.

Thu, 07/20/2017 - 15:23

Help at home worth £6 billion

New bill to improve support for UK informal carers. The proposed Carers (Identification and Support) Bill is summarised and responses from charities and other organisations are discussed. [BNI unique abstract]

Thu, 07/20/2017 - 15:23

Living and coping with Parkinson's disease: perceptions of informal carers

A review of the literature highlights the important role informal carers play in the provision of palliative care in the community. In order to explore the caring experience of relatives with Parkinson’s Disease (PD), interviews were conducted with 26 informal family caregivers. Interviews were taped, transcribed and subjected to content analysis. All caregivers were spouses, the majority female (n = 17) and all were responsible for providing physical, social and emotional care in the home.

Thu, 07/20/2017 - 15:23

Specialist palliative care in dementia

In its latest report on palliative care, the health committee of the House of Commons recorded the Department of Health's admission that the lack of palliative care for patients without cancer was the greatest inequity of all.1 In the United Kingdom, people die in hospices almost solely from cancer, although it accounts for only 25% of all deaths.1 w1 Yet patients dying from dementia have been shown to have healthcare needs comparable to those of cancer patients.2 The palliative care approach provides appropriate control of symptoms, emphasises overall quality of life, takes a holistic appr

Thu, 07/20/2017 - 15:21

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