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Journal article

People with dementia and carer preferences for home support services in early-stage dementia

Objectives: To examine people with dementia and carer preferences for home support attributes in early-stage dementia, building on the paucity of evidence in this area. Method: Preferences from 44 people with dementia and 103 carers, recruited through memory clinics and an online questionnaire, were assessed with a Discrete Choice Experiment survey, with attributes informed by an evidence synthesis and lay consultation. A conditional logit model was used to estimate preference weights for the attributes within a home support ‘package’.

Sun, 03/31/2019 - 17:32

Attachment, mentalisation and expressed emotion in carers of people with long-term mental health difficulties

Background: Expressed emotion (EE) is a global index of familial emotional climate, which is comprised of emotional over-involvement (EOI) and critical comments (CC)/hostility. Although EE is an established predictor of negative outcomes for both people with long-term mental health difficulties and their family carers, its psychological underpinnings remain relatively poorly understood. This paper examined associations between attachment, mentalisation ability and aspects of EE.

Sun, 03/31/2019 - 17:27

The chronic sorrow experiences of caregivers of clients with schizophrenia in Taiwan: A phenomenological study

Purpose :The aim of the article is to explore the chronic sorrow experiences of the caregivers of clients with schizophrenia in Taiwan. Design and Methods: Descriptive, phenomenological, and purposive sampling and one‐to‐one, in‐depth, and unstructured interviews were used. Data saturation was achieved after interviewing 12 participants. Narratives were analyzed using Colaizzi's (1978) method.

Sun, 03/31/2019 - 17:14

Staff experiences of double-duty caring: at home and at work

Many healthcare, social care and voluntary agency employees are carers at work and at home, a phenomenon referred to as double-duty caregiving. Using meta-ethnography, this article provides a synthesis of qualitative research by analysing the original words of the interviewees. A linguistic and metaphoric overview provides a deeper, richer picture of the experience of double-duty caring, revealing the sacrifices associated with being a carer at home while employed in a healthcare system, and the paradoxical effects of holding a position in both worlds simultaneously.

Sun, 03/31/2019 - 17:04

"What's going to happen when we're gone?" Family caregiving capacity for older people with an intellectual disability in Ireland

Background: Changing family sociodemographic factors, increased life expectancy for people with an intellectual disability, deinstitutionalization and policy prioritization of the family as the principal care provider, presents new challenges to care sustainability. Method: A qualitative study design was employed, entailing focus groups and semistructured interviews, with purposive sampling via the parent study population of the Intellectual Disability Supplement to The Irish Longitudinal Database on Ageing.

Sun, 03/31/2019 - 16:59

A cross‐sectional study on experiences of young adult carers compared to young adult noncarers: parentification, coping and resilience

Background Most young carer studies on parentification, resilience and coping concentrated on child carers up to age 18 years, whereas the group of young adult caregivers (18–24 years) has been neglected. In our study, we focused on these young adult caregivers, who are in a life phase in which young people usually are distancing themselves from their families and are striving for autonomy and freedom. Aim To explore young adult carers’ perceptions of parentification, resilience and coping compared to young adult noncarers.

Sun, 03/31/2019 - 16:54

Development and validation of a screener based on interRAI assessments to measure informal caregiver wellbeing in the community

Background :Informal caregivers are invaluable partners of the health care system. However, their caring responsibilities often affect their psychological wellbeing and ability to continue in their role. It is of paramount importance to easily identify caregivers that would benefit from immediate assistance. Methods: In this nonexperimental cohort study, a cross-sectional analysis was conducted among 362 informal caregivers (mean age 64.1 years, SD ± 13.1) caring for persons with high care needs (mean age 78.6 years, SD ± 15.0).

Fri, 03/29/2019 - 12:19

Informal caregiving in head and neck cancer: caregiving activities and psychological well-being

The purpose of this study was to quantify the general cancer support activities that long‐term carers of head and neck cancer (HNC) survivors engage in; and the relationships between these care activities and psychological well‐being. Respondents answered a survey detailing their caring activities, the amount of time that they spent on those activities and how comfortable they felt engaging in them. Psychological well‐being was assessed by the Depression Anxiety Stress Scales‐21. A total of 197 carers took part in the study. The majority (76%) were women, mean age 57.4.

Fri, 03/29/2019 - 12:05

Carers’ experiences of group therapeutic songwriting: An interpretive phenomenological analysis

Supporting carers of people living with dementia to live happy and healthy lives is of international importance. This study aimed to explore carers’ experiences of participating in a creative group songwriting process. Four carers (2 male and 2 female) of people living with dementia participated in four therapeutic group songwriting sessions. Facilitated by two music therapists and support staff, the participants co-created a song that reflected their carer experiences allowing positive and negative perspectives to be represented in the song.

Fri, 03/29/2019 - 11:59