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Place4Carers: a multi-method participatory study to co-design, piloting, and transferring a novel psycho-social service for engaging family caregivers in remote rural settings

Background: Family caregivers are key actors in the ageing society. They are mediators between practitioners and patients and usually provide also essential daily services for the elders. However, till now, few services have been deployed to help caregivers in their care tasks as in improving their mental health which can experience sever burden due to caregiving duties.

Sun, 06/12/2022 - 13:08

Personal Loss, Parental Relationships, and Caregiving Intentions among Adult Siblings of Individuals with Mental Illness

Background: Although parents often provide care for adult children coping with serious mental illness, adult siblings are typically expected to assume caregiving responsibilities when parents are no longer able to do so. However, relatively little is known about how family relationships and adults' own reactions to their sibling's mental illness may relate to their intentions to provide future sibling care.

Sat, 06/11/2022 - 11:18

Perceptions of care coordination in cancer patient-family caregiver dyads

Purpose: To examine cancer patients and their family caregivers' perspectives of care coordination (CC) using a dyadic research design. Methods: In this pilot cross-sectional study, 54 patient-family caregiver dyads completed a validated care coordination instrument (CCI) and its parallel family caregiver instrument (CCICG) from June to September 2019. The sample available for analysis included data from 32 dyads, which included patients receiving active therapy for any cancer type and their primary family caregivers aged 18 years or older.

Sat, 06/11/2022 - 11:05

Patients and family caregivers report high treatment expectations during palliative chemotherapy: a longitudinal prospective study

Background: When discussing treatment options and future care, it is important to understand the expectations of patients and family caregivers related to palliative chemotherapy and to identify patterns in patients’ quality of life. The study aims were to evaluate differences in treatment expectations and quality of life between patients with thoracic cancer (non-small-cell lung cancer, small-cell lung cancer and mesothelioma) who were < 70 and ≥ 70 years of age and receiving palliative chemotherapy and to assess family caregivers’ treatment expectations.

Sat, 06/11/2022 - 10:06

Patient and caregiver experiences of living with acute hepatic porphyria in the UK: a mixed-methods study

Background: This study used quantitative and qualitative research methods to analyze how acute hepatic porphyria (AHP) affects patients with varying annualized porphyria attack rates. The overall impact of AHP on patients and caregivers, including their quality of life, was explored.

Fri, 06/10/2022 - 12:25

Parental Stress in Primary Caregivers of Children with Evidence of Congenital Zika Virus Infection in Northeastern Brazil

Background: Despite the well-known role of parents as caregivers, few studies have addressed their health outcomes related to the Zika virus epidemic. Methods: A cross-sectional study was carried out with 146 primary caregivers of children 15–26 months of age, with laboratory and/or clinical evidence of Zika infection between August and October 2017 in three Brazilian municipalities: João Pessoa and Campina Grande in the state of Paraíba and Fortaleza in the state of Ceará.

Fri, 06/10/2022 - 11:33

The Protective Role of Social Support Sources and Types Against Depression in Caregivers: A Meta-Analysis

Background: The protective effects of social support for caregiver mental health are well documented, however the differential impact of support providers (partner, child, family, siblings, friends, professionals) and types (perceived, received) remain unclear. Methods: Observational data from 21 independent studies, involving a pooled sample of 2273 parents, stepparents and grandparents of children (aged ≤ 19) with autism spectrum disorder (ASD) were examined. Pearson's r, publication bias and heterogeneity were calculated using random effects modelling.

Thu, 06/09/2022 - 17:22

On the way home: a BCI-FES hand therapy self-managed by sub-acute SCI participants and their caregivers: a usability study

Background: Regaining hand function is the top priority for people with tetraplegia, however access to specialised therapy outwith clinics is limited. Here we present a system for hand therapy based on brain-computer interface (BCI) which uses a consumer grade electroencephalography (EEG) device combined with functional electrical stimulation (FES), and evaluate its usability among occupational therapists (OTs) and people with spinal cord injury (SCI) and their family members.

Thu, 06/09/2022 - 14:05

Needs of patients with dementia and their caregivers in primary care: lessons learned from the Alzheimer plan of Quebec

Background: Persons living with dementia have various health and social care needs and expectations, some which are not fully met by health providers, including primary care clinicians. The Quebec Alzheimer plan, implemented in 2014, aimed to cover these needs, but there is no research on the effect this plan had on the needs and expectations of persons living with dementia. The objective of this study is to identify persons living with dementia and caregivers’ met and unmet needs and to describe their experience.

Thu, 06/09/2022 - 12:18

A national survey of caregiver’s own experiences and perceptions of U.S. health care system when addressing their health and caring for an older adult

Background: Caregiving is a demanding role that can negatively impact a person’s health and well-being. As such, adequate access to health care is important for maintaining the family caregiver’s own personal health. Objectives: The aims of this study were to identify if family caregivers of older adults had more difficulty accessing health care services than non-caregivers and to identify if family caregivers felt access to additional services would be beneficial for maintaining their own personal health care.

Thu, 06/09/2022 - 10:43

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