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Constructing a new role for family carers and volunteers providing care towards the end of life: an action research approach exploring a new model of hospice care

Objective: The objective of this study was to understand the conceptualisation and development of a novel way of providing end‐of‐life care in a Cottage Hospice setting, with a focus on the role of family carers and volunteers within this care model. Methods: A participatory action research design enabled a situational analysis, together with change processes. The study setting was a hospice in the South of England, and its network of wider associates in the local health economy. Participants were purposively sampled to provide relevant information.

Tue, 02/01/2022 - 15:52

Namaste care in the home setting: developing initial realist explanatory theories and uncovering unintended outcomes

Introduction: The End-of-Life Namaste Care Program for People with Dementia, challenges the misconception that people with dementia are a 'shell'; it provides a holistic approach using the five senses, which can provide positive ways of communicating and emotional responses. It is proposed Namaste Care can improve communication and the relationships families and friends have with the person with dementia.

Mon, 02/17/2020 - 15:27

The Carers' Alert Thermometer (CAT): supporting family carers of people living with motor neurone disease

Background: Burden and distress among family carers of people living with motor neurone disease (MND) are reported widely. Evidence-based screening tools to help identify these carers' needs and plan appropriate support are urgently needed. Aim: To pilot the Carers' Alert Thermometer (CAT), a triage tool developed to identify carers' needs, with family carers of people living with MND to determine its usefulness in identifying their need for support.

Wed, 09/11/2019 - 13:25

'Being with' or 'doing for'? How the role of an end-of-life volunteer befriender can impact patient wellbeing: interviews from a multiple qualitative case study (ELSA)

Purpose: To explore the perspectives of people anticipated to be in their last year of life, family carers, volunteers and staff on the impacts of receiving a volunteer-provided befriending service. Patient participants received up to 12 weeks of a volunteer-provided befriending intervention. Typically, this involved one visit per week from a trained volunteer. Such services complement usual care and are hoped to enhance quality of life. Methods: Multiple case study design (n = 8).

Tue, 05/28/2019 - 15:59

Volunteer peer support and befriending for carers of people living with dementia: an exploration of volunteers' experiences

With ageing populations and greater reliance on the voluntary sector, the number of volunteer-led peer support and befriending services for carers of people with dementia in England is set to increase. However, little is known about the experiences of the volunteers who deliver these interventions, many of whom are former carers.

Wed, 05/15/2019 - 09:34

Towards a culturally acceptable end-of-life survey questionnaire: a Bengali translation of VOICES

Aim To assess the cultural acceptability and appropriateness of an English end-of-life survey questionnaire translated into Bengali for use in east London.

Study design Group discussions with informal carers (n=3 groups) and professionals (n=1 group).

Thu, 07/20/2017 - 15:24

Lighting Up: lessons learned in establishing an arts project

Lighting Up is a project in which artists work with people who have dementia and their carers. It has been running for over two years, and is now based in three venues in Bristol and South Gloucestershire. This article describes what Lighting Up has done and learnt over that time. Lighting Up aims to ensure that sessions encourage continuity and development from one session to the next, rather than simply being one-off enjoyable events. The focus is on the quality of participants’ lives rather than the outcomes of any specific activity.

Thu, 07/20/2017 - 15:19

The Princess Royal Trust for Carers in association with Young Carers International Research and Evaluation

The article presents a study that examined the experiences, needs and service responses to the 290,000 young adult caregivers aged 16-24 in Great Britain today. It says that the research included a literature review, secondary analysis of 2001 Census data, a survey of 25 young caregivers projects, a survey of 13 adult carers services, focus groups with 29 young caregivers aged 16 and 17, discussions with staff at focus group sites, and in-depth interviews with 25 young adult caregivers aged 18-24 across the country.

Thu, 07/20/2017 - 15:15

Carers support and assessments

The article focuses on the important role played by carers in the society in Great Britain. Carers allow the people that they look after to stay in the community making it vital for them to be supported continuously. The Carers (Equal Opportunities) Act of 2004 was introduced to ensure that carers are determined, educated about their rights and informed that public agencies support their initiatives. It stresses the need to develop carers' lack of self-confidence and self-esteem to avoid disadvantages in other endeavors.

Thu, 07/20/2017 - 15:11

LEAP framework

The LEAP (learning, evaluation and planning) framework is a toolkit designed to support a partnership approach to achieving change and improvement in the quality of community life. It has been used by policy makers, practitioners, and community activists in the fields of health education; adult learning; volunteering; and environmental planning. The framework will be of interest to anyone interested in using a partnership approach to improving outcomes for communities, service users and carers.

Thu, 07/20/2017 - 15:11