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Exploring the experiences of siblings of adults with intellectual/developmental disabilities during the COVID-19 pandemic

Background The COVID-19 pandemic has caused many adults with intellectual/developmental disabilities (IDD) to lose their daily routines and social support, and as a result, many adults with IDD are increasingly reliant on their family caregivers. Siblings often play a crucial support role for their brothers and sisters with IDD. As such, this study aimed to describe the experiences of adult siblings of people with IDD during the COVID-19 pandemic.

Sat, 01/23/2021 - 16:25

Placement decisions of families co-residing with an adult relative with an intellectual disability

Placement behaviours of families of adults with intellectual disabilities has received little or no attention of researches to date. A prospective design was adopted to examine changes in placement decisions of 75 family carers over a 12-month period. Factors associated with changes were also examined. Over 12 months, 30 families moved closer to considering an out of home placement. Of these 14 had placed their relative in out of home care. Proactive coping strategies were significantly associated with an increased likelihood of continued home care.

Sat, 12/12/2020 - 15:24

Communication experiences of family caregivers of hospitalized adults with intellectual and developmental disabilities-A qualitative study

Aim: To explore communication experiences between family caregivers of adults with intellectual and developmental disabilities (I/DD) and healthcare personnel during hospitalization.; Design: A qualitative descriptive study approach with interviews of family caregivers was used.; Method: Face-to-face, semi-structured interviews were conducted from June-September 2015 with ten family caregivers of adults with I/DD. Participants were recruited through an advocacy organization in the north-eastern United States.

Mon, 11/23/2020 - 15:05

Coronavirus (COVID-19): providing unpaid care to adults with learning disabilities and autistic adults

This guidance is for anyone who provides unpaid care, such as friends or family, to adults with learning disabilities and autistic adults.

Mon, 11/16/2020 - 13:04

Sociodemographic Characteristics and Preferences for Family (Informal) and Formal Caregiver Help With ADLs

The purpose of this article was to compare sociodemographic characteristics and various care preferences for family and formal caregivers help with activities of daily living (ADLs). The sample was 56,337 noninstutionalized U.S. civilian adults, 40 to 65 years of age. This is a cross-sectional study using secondary data from the National Health Interview Survey (NHIS)—2011 to 2014. Respondents’ sociodemographic characteristics and various care preferences for caregiver help with ADLs were analyzed.

Tue, 09/10/2019 - 15:39

Sleep problems in adults with Down syndrome and their family carers

Background: Sleep disturbance is common and can have harmful psychological and physical effects. While sleep problems in children with Down syndrome (DS) have received a reasonable amount of attention, very little has been written about this topic in adults with DS.; Method: The present study consisted of an online survey completed by 100 family carers of adults with DS.; Results: High rates of sleep problems of different types were reported in the adults with DS comparable to those found in children with DS in previous research.

Tue, 07/02/2019 - 14:56

Population-Based Profile of Mental Health and Support Service Need Among Family Caregivers of Adults With Cancer

PURPOSE: We examined associations between caregiving intensity and mental health among cancer caregivers at the population level and potential moderation by an actionable intervention target, support service needs. METHODS: Behavioral Risk Factors Surveillance System survey data (2015) from caregivers of adult patients with cancer was analyzed. Caregiving intensity included hours per week caregiving (high, > 20; low, ≤ 20) and caregiving duration (long, > 2 years; short, ≤ 2 years). Mental health was reported as number of mentally unhealthy days (MUDs) in the past 30.

Wed, 06/19/2019 - 10:50

Family Involvement in Adult Chronic Disease Care: Reviewing the Systematic Reviews

Health care providers, policy makers, and investigators are dependent upon the quality and accuracy of published research findings to inform and guide future practice and research in their field. Systematic reviews, the synthesis of outcomes across studies are increasingly more common in the family literature; however, published review reports often lack information on strategies reviewers used to insure dependability of findings, and minimize methodological bias in the review.

Thu, 06/13/2019 - 14:10

Trajectories of caregiver burden in families of adult cystic fibrosis patients

Objectives: Little is known about the experience of family caregivers of adults with cystic fibrosis (CF). This information is important for the identification of caregivers at risk for burden. Methods: This was a longitudinal analysis of survey data obtained from caregivers of adult CF patients participating in an early intervention palliative care trial. Caregivers completed the validated Brief Assessment Scale for Caregivers (BASC) repeatedly over a 28-month period.

Fri, 06/07/2019 - 11:25

Mental capacity legislation in the UK: systematic review of the experiences of adults lacking capacity and their carers

AIMS AND METHOD: Capacity legislation in the UK allows substitute decision-making for adults lacking capacity. Research has explored the experiences of such adults and their carers in relation to the Adults with Incapacity (Scotland) Act 2000, and the Mental Capacity Act 2005 in England and Wales. A systematic review of the relevant research was performed using a framework method. RESULTS: The legislation provided mechanisms for substitute decision-making which were seen as useful, but there were negative experiences.

Wed, 05/15/2019 - 10:29

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