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Caregiver emotional distress: external open-behaviour signs

Objectives: To determine whether specific external signs of emotional distress (ESED) can be an indirect measure of emotional distress in caregivers.; Methods: A cross-sectional multicentre design was used. 148 primary caregivers of advanced cancer patients attended in four Spanish palliative care units participated in this study. The emotional distress of caregivers was measured using both the Emotional Distress of Caregivers Scale and a psychological interview.

Wed, 09/11/2019 - 09:11

Development and validation of the Family Resilience (FaRE) Questionnaire: an observational study in Italy

Objective: Develop and validate an instrument to assess family resilience and, more specifically, the family dynamics and resources, estimating the adaptation flexibility to cancer disease. Cohesion, communication, coping style and relational style were considered as critical functional areas in the construction of the instrument.; Design: Two cross-sectional studies. Study 1: identification of factorial structure of the questionnaire in two samples with different cancer sites.

Mon, 09/09/2019 - 13:46

Impact of medical assistance in dying (MAiD) on family caregivers

Medical assistance in dying (MAiD) is a globally polarising topic which often sparks debate surrounding the ethical and moral dilemmas that arise with a life-ending intervention. To gain a better understanding of this intervention, it is important to explore the experience of those most intimately affected by MAiD. Family caregivers of those with a terminal illness are the backbone of the healthcare and support team, often providing a substantial amount of informal care while at the same time coping with their own distress and anticipatory grief.

Thu, 06/13/2019 - 14:20

Healing experience for family caregivers after an intensive care unit death

Objectives: Family caregivers suffer a high burden of emotional and psychological distress following the death of a loved one in the intensive care unit and often struggle to heal in the weeks following their loss.

Tue, 06/11/2019 - 11:26

Supporting family carers in home-based end-of-life care: using participatory action research to develop a training programme for support workers and volunteers

Background: Family carers are crucial in enabling dying people to stay at home, but are often not prepared for their caring role, receiving little support from formal health and social care services.

Mon, 06/10/2019 - 14:20

Advance care plans in dementia: User-centred design

Objectives: Historically, dementia has not been recognised as a life-limiting condition or one that may benefit from a palliative approach to its care. There are many challenges in providing palliative and end-of-life care to this group of people, some of which may be reduced through advance care planning (ACP) to support people with dementia to have a greater influence on their care at end of life.

Fri, 06/07/2019 - 14:30

Qualitative, exploratory pilot study to investigate how people living with posterior cortical atrophy, their carers and clinicians experience tests used to assess vision

Objectives To investigate the experiences and views of people living with posterior cortical atrophy (PCA), their family carers and healthcare professionals of vision assessment tests. Design A qualitative investigation using video recordings of vision assessments, semistructured interviews and audio recordings of a focus group. Interviews and focus group used broad, open questions around the topic to prompt and guide discussion. Video and audio recordings were transcribed, manually coded and analysed using framework analysis.

Fri, 06/07/2019 - 12:41

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