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Support to informal caregivers of patients with severe chronic obstructive pulmonary disease: A qualitative study of caregivers' and professionals' experiences in Swedish hospitals

Objectives Informal caregivers of patients with chronic obstructive pulmonary disease (COPD) experience a heavy caregiver burden, but few studies have explored what support they need. The aim of this study was to describe perceptions of healthcare support to informal caregivers, both from the family caregiver's and the staff's perspective. Design A qualitative interview study involving semi-structured interviews and analysed with content analysis.

Wed, 10/23/2019 - 09:41

DESKK Study - Development and testing of a dementia-specific respite care concept with a mobility and counselling programme: Study protocol

Introduction: Specific mobility programmes can delay functional decline in people with dementia (PwD). Family caregivers (FCs) can be relieved from care-related burden by counselling services. Respite care is a short-term inpatient care service (1-8 weeks of stay). Respite care centres (RCCs) can function as support structures for dementia care arrangements through caring-based mobility training of PwD and counselling sessions for their FCs. However, no systematic mobility or counselling programmes exist in this setting in Germany or the rest of the world.

Wed, 10/09/2019 - 13:36

'What happens when I can no longer care?' Informal carers' concerns about facing their own illness or death: a qualitative focus group study

OBJECTIVES: Older informal carers play an increasingly important role in supporting others with long-term health conditions. This study aimed to explore in depth the perspectives of older carers (70+ years) supporting others with a variety of conditions and disabilities focusing on their thoughts and experiences about when they are unable to continue caring. DESIGN: Qualitative with four focus groups. SETTING: Greater London, UK. PARTICIPANTS: 28 older carers (70+ years) recruited from the voluntary sector participated in this study.

Wed, 10/09/2019 - 12:47

Costs of Family Caregiving in Palliative Care (COFAC) questionnaire: development and piloting of a new survey tool

BACKGROUND: Family caregivers play an important role in the care of patients receiving palliative care, yet little is known about the financial impact of family caregiving in this context. A lack of existing validated tools for collecting data on the costs of family caregiving in palliative care has resulted in a weak and limited evidence base. The aim of the study was to describe the development and initial piloting of a new survey tool which captures data on the costs of family caregiving in palliative care: the Costs of Family Caregiving (COFAC) questionnaire.

Wed, 10/09/2019 - 11:19

Psychosocial singing interventions for the mental health and well-being of family carers of patients with cancer: Results from a longitudinal controlled study

Objective The mental health challenges facing people who care for somebody with cancer are well documented. While many support interventions focus on provision of information or cognitive behavioural therapy, the literature suggests that psychosocial interventions could also be of value, especially given the low social support frequently reported by carers. Singing is a psychosocial activity shown to improve social support, increase positive emotions, and reduce fatigue and stress.

Mon, 10/07/2019 - 14:36

Australian mental health caregiver burden: a smallest space analysis

Objectives: To explore Australian mental health carers' prioritisation of key elements of caregiving and establish the extent to which particular issues contribute to carer burden.; Design: Cross-sectional survey.; Setting: All Australian States and Territories.; Participants: Responses were received from 231 Australian mental health caregivers.; Main Outcome Measures: The Involvement Evaluation Questionnaire was used to assess caregiver burden.; Results: Smallest space analysis identified

Wed, 09/11/2019 - 12:36

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