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Palliative and End-of-Life Care: More Work is Required

There is currently growing recognition of the complex care needs of patients with life-limiting conditions and their family members, prompting the need to revisit the goals of medicine. This Special Issue reflects a broad research agenda in the field of palliative and end-of-life care. A total of 16 papers of empirical studies and systematic review are included spanning five domains, namely, patient, caregiver, healthcare provider, policy, and methodology.

Tue, 04/06/2021 - 12:02

The invisible workforce during the COVID-19 pandemic: Family carers at the frontline [version 1; peer review: 2 approved]

This is an open letter to acknowledge the essential and increasingly challenging role unpaid family carers are playing in the COVID-19 pandemic. The letter is written by members of the CAREWELL team, a HRB-funded project that aims to promote health and self-care behaviours among working family carers. Family carers provide care to family and friends in the community who need support due to old-age, disability and chronic illness.

Tue, 09/08/2020 - 12:41

Allowing Visitors Back in the Nursing Home During the COVID-19 Crisis: A Dutch National Study Into First Experiences and Impact on Well-Being

Objectives: To prevent and control COVID-19 infections, nursing homes across the world have taken very restrictive measures, including a ban for visitors. These restrictive measures have an enormous impact on residents' well-being and pose dilemmas for staff, although primary data are lacking. A Dutch guideline was developed to cautiously open nursing homes for visitors during the COVID-19 pandemic.

Thu, 07/23/2020 - 15:25

Young Carers Research, Practice and Policy: An Overview and Critical Perspective on Possible Future Directions

Many children, adolescents, teenagers, and young adults have caring responsibilities for parents and family members. These young carers and young adult carers are present in every country. Their responsibilities include domestic chores as well as intimate personal care and other forms of helping which are generally seen as the responsibility of adult professionals. First, this article provides an overview and critical perspective on young carers research.

Fri, 09/06/2019 - 13:40

How Much Is This Going to Cost? Inviting the Math Club to the Table

Projection models enable users to assess the costs and benefits of changes to long-term services and supports policies and to compare policy options, using a consistent set of underlying assumptions. Outlined are key challenges model developers face, including data limitations, difficulties anticipating potential behavioral responses, the need to assign appropriate benchmarks, the value of family care and intangibles like autonomy and quality of life, and grappling with uncertainty.

Thu, 06/13/2019 - 10:11

Family care work: a policy-relevant research agenda

This article addresses the need for policy-relevant research agendas on family care in transaction with formal care and public as well as organisational norms and policies in light of the crisis in caregiving for older adults. We propose a combined institutional and life-course theoretical approach, suggesting seven ways of organising scholarly enquiry to promote understanding of the changing nature of family care in the 21st century, inform policymakers' efforts at supporting family caregivers and improve caregivers' and care recipients' quality of life.

Thu, 05/23/2019 - 12:56

The carers' covenant

Based on the findings from research, this report makes recommendations provide better support for carers. The 12 policy recommendations cover five key themes of financial assistance, employment, identification and support, support networks and technology. Together, the policies together form a covenant for carers. The research looked at who informal carers are and the amount of care they provide, explored the experience of informal carers through two focus groups, and looked at the support available for carers internationally.

Tue, 04/16/2019 - 10:56

Who cares? The implications of informal care and work for policy makers and employers

Outlines some of the implications associated with the growing number of informal carers in the UK, the health and social care system's increasingly unsustainable reliance on them, and what Government and employers can do about it. The report is informed by the academic and grey literature, as well as views from a workshop attended by over 30 stakeholders from government and non-government bodies, individual carers, carers charities, think tanks, and businesses.

Fri, 04/12/2019 - 16:51

Co-design of a carers strategy for New South Wales: reflections on a new approach to collaborative policy making with carers

NSW is Australia's most populous state, with 7.7 million people (about a third of the Australian population). There are 905,000 carers in NSW. Carers provide ongoing unpaid support to people who need it because of their disability, chronic illness, mental ill-health, dementia or frail age.

Wed, 04/10/2019 - 15:45

Physical health and mental illness: listening to the voice of carers

Background: Shortened life expectancy of people with mental illness is now widely known and the focus of research and policy activity. To date, research has primarily reflected perspectives of health professionals with limited attention to the views and opinions of those most closely affected. The voice of carers is particularly minimal, despite policy stipulating carer participation is required for mental health services. Aim: To present views and opinions of carers regarding physical health of the people they care for.

Mon, 03/25/2019 - 13:49

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