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Journal article

'She misses the subtleties and I have to help - help to make the invisible visible': parents' role in supporting adults with intellectual and developmental disabilities with intimate relationships

Background: People with intellectual and developmental disabilities often need support to develop and maintain intimate relationships; however, little is known regarding the role of family carers in this area. Methods: Focus groups were conducted with 19 family members to explore the support they provide to people with intellectual and developmental disabilities to find a potential partner and any support they may have to provide to support/develop an existing relationship.

Fri, 07/29/2022 - 16:20

The ‘work’ of managing medications when someone is seriously ill and dying at home: A longitudinal qualitative case study of patient and family perspectives’

Background: Managing medications can impose difficulties for patients and families which may intensify towards the end of life. Family caregivers are often assumed to be willing and able to support patients with medications, yet little is known about the challenges they experience or how they cope with these. Aim: To explore patient and family caregivers’ views of managing medications when someone is seriously ill and dying at home.

Tue, 07/26/2022 - 10:52

Work-family balance in the second half of life: caregivers' decisions regarding retirement and working time reduction in Europe

Objectives: This article investigates how different types of informal caregiving - upward, lateral and downward - impact men's and women's decisions to retire or to reduce their working hours, and how welfare policy characteristics moderate the linkage between informal care provision and employment participation. Methods: The analyses are based on six waves from the Survey of Health, Ageing and Retirement in Europe (SHARE).

Tue, 07/26/2022 - 10:39

“A World Upside Down”: Experiences of Informal Caregivers During the COVID-19 Pandemic

Background: The caregiving process may result in negative outcomes for caregivers. The coronavirus disease 2019 pandemic has contributed additional challenges for family caregivers of older adults with chronic illnesses. Little is known about the additional impact of the pandemic on caregivers. Objectives: The purpose of the current study was to understand the effects of the pandemic on the caregiving experience. Methods: A qualitative descriptive content analysis was conducted on nine blogs of caregivers of older adults.

Tue, 07/26/2022 - 10:30

“You Feel Very Isolated”: Effects of COVID-19 Pandemic on Caregiver Social Connections

Background: One in five individuals in the United States provides care and support to ill, disabled, and aging family members in the home, leading to feelings of burden, stress, and poor health and well-being. Social support represents an important buffer for family caregivers that allows them to feel less isolated and more positive about their caregiving role. Methods: This sequential mixed-methods study aimed to examine the effect of the COVID-19 pandemic on family caregivers’ social connections.

Tue, 07/26/2022 - 10:23

"Why Couldn't I Go in To See Him?" Bereaved Families' Perceptions of End‐of‐Life Communication During COVID‐19

Background/Objective: The COVID‐19 pandemic has resulted in rapid changes to end‐of‐life care for hospitalized older adults and their families, including visitation restrictions. We examined bereaved families' perceptions of the quality of end‐of‐life communication among Veterans, families and staff in Veterans Affairs (VA) medical centers during the COVID‐19 pandemic. Design: Qualitative descriptive study using data from a survey of bereaved family members of Veterans administered from March–June 2020.

Mon, 07/25/2022 - 20:22

Whose story is it? Mental health consumer and carer views on carer participation in research

Background: Mental health carers contribute a unique set of perspectives and lived experiences to research; however, national research ethics guidelines do not specifically address the issues that affect informal carers as participants. Objective: This study sought to explore Australian mental health consumer and carer views on the ethical conduct of research involving mental health carers.

Mon, 07/25/2022 - 20:17

Who is taking care of the Chinese functionally impaired older people? The characteristics of family caregivers from China Health and Retirement Longitudinal Study

Objective: To investigate caregiving in terms of personal, family and living arrangement among Chinese functionally impaired older people. Methods: A secondary cross‐sectional analysis of data obtained from China Health and Retirement Longitudinal Study (CHARLS) was performed. Among 6,252 participants aged 65 years or older, people with at least one indicator of Activities of Daily Living Scales (ADLs) of disabilities were included in this research. Statistical analyses included chi‐square tests and multiple logistic regression modelling.

Mon, 07/25/2022 - 19:55

Who are the beneficiaries and what are the reasons for non-utilization of care respite and support services? A cross-sectional study on family caregivers

Background: Family caregivers assume substantial caregiving responsibilities for persons with chronic conditions, such as individuals with spinal cord injury, which leads to negative impacts on their lives. Respite care and other services are provided as a temporary relief and support for them. Design of appropriate respite care programs depends on identification of beneficiary subgroups for the different types of service.

Mon, 07/25/2022 - 19:50

A Whirlpool of Stress in Families of Intensive Care Unit Patients: A Qualitative Multicenter Study

Background: Family members of patients admitted to the intensive care unit must tolerate high levels of stress, making them emotionally and physically vulnerable. However, little is known about the kinds of stress family members may experience. Objective: To explore perceived stress in the families of patients admitted to the intensive care unit. Methods: This qualitative content analysis study involved 23 family members of patients admitted to intensive care units.

Mon, 07/25/2022 - 19:21

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