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Impact of COVID-19 related social support service closures on people with dementia and unpaid carers: a qualitative study

Objectives Accessing social care and social support services is key to support the well-being of people living with dementia (PLWD) and unpaid carers. COVID-19 has caused sudden closures or radical modifications of these services, and is resulting in prolonged self-isolation. The aim of this study was to explore the effects of COVID-19 related social care and support service changes and closures on the lives of PLWD and unpaid carers. Method PLWD and unpaid carers were interviewed via telephone in April 2020.

Wed, 09/23/2020 - 15:48

Value and learning from carer involvement in a cluster randomised controlled trial and process evaluation - Organising Support for Carers of Stroke Survivors (OSCARSS)

Background: Patient, Carer and Public Involvement (PCPI) should be embedded in health care research. Delivering PCPI can be challenging, but even when PCPI is carried out it is rarely reported resulting in lost opportunities for learning. This paper aims to describe PCPI in the OSCARSS study, a pragmatic-cluster randomised controlled trial with an embedded economic and process evaluation. Methods: A carer research user group (RUG) co-developed OSCARSS to evaluate how to best deliver support to caregivers of stroke survivors.

Wed, 09/09/2020 - 15:02

Positive aspect of caregiving among primary informal dementia caregivers in Singapore

Background The present study investigated the factor structure of positive aspects of caregiving (PAC) scale among primary informal caregivers providing care to persons with dementia (PWD) in Singapore. Methods 282 primary informal caregivers of PWD were recruited from the Institute of Mental Health, and Changi General Hospital and administered the 9-item PAC scale.

Wed, 09/09/2020 - 14:53

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

Caregivers’ failure to thrive: A case for health and continuing care systems transformation

Excluding family caregivers and their goals from healthcare thinking and system design has contributed to their “failure to thrive.” Family caregivers are diverse, with dynamic, enduring, and variable life course care trajectories that are largely ignored. Using a co-design approach, caregivers prioritized their goals across seven life domains in an on-line survey. Physical, mental, and emotional health goals were top priorities across all ages. However, care-related goals were not caregivers’ highest priority.

Tue, 09/08/2020 - 12:23

Can We Hit Two Birds with One Stone: An Effectiveness Study of Peer-support Groups for Low-income Spousal and Adult Children Caregivers of Hong Kong Older Adults

This study aims to assess the effectiveness of peer support groups for low-income older adults’ caregivers in the Hong Kong community. It compares the effectiveness of peer support groups on spouse and adult children caregivers. The peer support program was structured into three stages, including six training sessions for peer specialists, eight caregiver support group sessions, and non-structured informal contact. The study adopted a quasi-experiment design supplemented with qualitative data collected from focused group interviews.

Fri, 08/14/2020 - 12:05

Tensions in dementia care in China: An interpretative phenomenological study from Shandong province

Aims: The study aims to analyse the tensions and the challenges of dementia care that are experienced by people with dementia and their family caregivers in China. Background: China has the largest dementia population in the world; however, dementia care services and related support services are still developing. Caring for a person with dementia is very challenging, as evidenced by many studies.

Fri, 08/14/2020 - 12:00

A comparison of psychometric properties of two common measures of caregiving burden: The family burden interview schedule (FBIS-24) and the Zarit caregiver burden interview (ZBI-22)

Purpose: The Family Burden Interview Schedule (FBIS-24) and the Zarit Caregiver Burden Interview (ZBI-22) are among the most widely used measures for assessing caregiving burden, but their psychometric performances have not been compared in the same study of caregivers of people living with schizophrenia (PLS). This is important because the measures assess overlapping constructs-the FBIS-24 assesses objective burden (e.g., completion of manual tasks) and the ZBI-22 assesses subjective burden (e.g., perceived distress, stigma).

Fri, 08/14/2020 - 11:55

A cross-sectional study on spouse and parent differences in caregiving experiences of people living with schizophrenia in rural China

Background Conflicting evidence exists on whether parent or spouse caregivers experience better outcomes when caring for family members with schizophrenia. The current study aims to examine relative caregiving experiences and impacts of spouse and parent caregivers for people living with schizophrenia (PLS) in China. Methods A cross-sectional study was conducted in a sample of 264 community-dwelling primary family caregivers of PLS.

Fri, 08/14/2020 - 11:28

An empowerment program for family caregivers of people with dementia

Objectives: Family caregivers of people with dementia (PWD) often feel powerless and experience decreased well-being. Our aim was to develop an intervention program based on the caregiver empowerment model (CEM) and apply it with the Korean caregivers to evaluate its effects. Design and Sample: The study population comprised 115 family caregivers (experimental group, n = 35, control group 1, n = 40, control group 2, n = 40). Methods: Using an experimental design with two control groups.

Fri, 08/14/2020 - 11:21

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