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Financial Challenges of Cancer for Adolescents and Young Adults and Their Parent Caregivers

This study examined the financial impact of cancer and the use of income support in adolescents and young adults (AYAs) with cancer and their parent caregivers. As part of a national Australian study exploring the psychosocial impacts of cancer, 196 AYAs ages 15 to 25 years, six to 24 months from diagnosis, and 204 parent caregivers from 18 cancer sites were surveyed. Logistic regression and chi-square analyses were conducted to assess the influence of clinical and sociodemographic variables on financial status.

Tue, 01/17/2023 - 15:33

Perspectives on Palliative Care Among Duchenne Muscular Dystrophy Patients and Their Families in Singapore

Introduction: With better medical care, patients with Duchenne muscular dystrophy (DMD) now live longer but face more complex medical and social needs. This study described the perceptions of DMD patients and their families of disease-specific palliative care services in Singapore.

Wed, 12/21/2022 - 08:52

A Sociodemographic variables questionnaire (Q-SV) for research on family caregivers of children with chronic disease

Background: Chronic diseases in childhood can affect the physical and mental health of patients and their families. The literature on pediatric chronic diseases has found important associations between the sociodemographic variables of children and their caregivers and negative health consequences in families.

Tue, 12/20/2022 - 13:21

Symptom distress and quality of life among Black Americans with cancer and their family caregivers

Objective: Black Americans are disproportionately affected by cancer and chronic diseases. Black patients with cancer and their family caregivers may concurrently experience symptoms that influence their wellbeing. This study investigates the influence of mental and physical symptom distress on quality of life (QOL) among Black Americans with cancer and their family caregivers from a dyadic perspective.

Wed, 06/29/2022 - 11:07

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

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