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The Burden of Spinal Muscular Atrophy on Informal Caregivers

Spinal muscular atrophy (SMA) is one of the most common severe hereditary diseases of infancy and early childhood. The progression of this illness causes a high degree of disability; hence, a significant burden is experienced by individuals with this disease and their families. We analyzed the time taken to care for patients suffering from SMA in European countries and the burden on their informal caregivers. We designed a cross-sectional study recording data from France, Germany, Spain and the United Kingdom.

Thu, 12/29/2022 - 12:22

Measuring Quality of Life in Parents or Caregivers of Children and Adolescents with Celiac Disease: Development and Content Validation of the Questionnaire

Celiac disease (CD) is an autoimmune disorder triggered by the ingestion of gluten and affects approximately 1% of the global population. Currently, the only treatment available is lifelong strict adherence to a gluten-free diet (GFD). Chronic diseases such as CD affect patients and their family members’ quality of life (QoL); particularly parents and caregivers who play an essential role in the child’s care and treatment.

Wed, 12/28/2022 - 17:16

Validity and Reliability of the Beck Anxiety Inventory (BAI) for Family Caregivers of Children with Cancer

Currently, information about the psychometric properties of the Beck Anxiety Inventory (BAI) in family caregivers of children with cancer is not available; thus, there is no empirical evidence of its validity and reliability to support its use in this population in Mexico or in other countries.

Tue, 12/20/2022 - 13:49

The Social Support Networks Scale (SSNS) for Family Caregivers of Children with Cancer: A Psychometric Evaluation

Currently, information about the psychometric properties of the Social Support Networks Scale (SSNS) for family caregivers of children with cancer is not yet available; therefore, there is no empirical evidence of its validity and reliability to support its use in this population. The aim of this study is to determine a factorial model of the SSNS, estimate its internal consistency reliability, describe its distribution, and check its concurrent validity.

Tue, 12/20/2022 - 13:44

Predictors of Quality of Life among Parents of Children with Chronic Diseases: A Cross-Sectional Study

Quality of life (QOL) is a key aspect of the health care process for children with chronic diseases and their families. Although clinical evidence regarding the impact of chronic disease on children exists, few studies have evaluated the effects of the interaction between sociodemographic and psychosocial factors on the family caregiver's QOL, indicating a significant gap in the research literature. The present study aimed to identify the predictors of the QOL of parents of children with chronic diseases.

Tue, 12/20/2022 - 13:35

Health-Related Quality of Life and Related Factors among Primary Caregivers of Children with Disabilities in Shanghai, China: A Cross-Sectional Study

Health-related quality of life (HRQOL) of caregivers of children with disabilities (CWD) is important for both children's rehabilitation and caregivers' life, but the corresponding attention is far from enough in mainland China. Thus, we investigated the HRQOL of 170 caregivers and related factors in Shanghai. The 12-item Short Form Health Survey (SF-12) was used to measure HRQOL. The potential factors were collected, including child characteristics, caregiver characteristics, and environmental factors.

Tue, 12/13/2022 - 12:59

How does a family caregiver’s sense of role loss impact the caregiving experience?

Background: Family caregivers reportedly have a powerful sense of role loss, which is felt when one senses a change in role or responsibility, relationship distancing, or a changed asymmetry.

Fri, 09/02/2022 - 20:25

Family caregivers’ experiences with tele-rehabilitation for older adults with hip fracture

Background: There is a knowledge gap for implementing tele-rehabilitation (telerehab) after hip fracture. We recently conducted a clinical trial (ClinicalTrials.gov Identifier: NCT02968589) to test a novel online family caregiver-supported rehabilitation program for older adults with hip fracture, called @ctivehip. Objectives: In this qualitative substudy, our objective was to use semi-structured interviews to explore family caregivers experience with the telerehab program.

Fri, 09/02/2022 - 10:42

Informal caregiving, loneliness and social isolation: A systematic review

Background: Several empirical studies have shown an association between informal care-giving for adults and loneliness or social isolation. Nevertheless, a systematic review is lacking synthesizing studies which have investigated these aforementioned associations. Objectives: Therefore, our purpose was to give an overview of the existing evidence from observational studies. Materials and Methods: Three electronic databases (Medline, PsycINFO, CINAHL) were searched in June 2021.

Thu, 09/01/2022 - 11:42

The experiences of people with dementia and informal carers related to the closure of social and medical services in poland during the covid-19 pandemic—a qualitative study

Background: Older people with dementia are particularly at risk of COVID-19; however, relatively little is known about the indirect impact of the pandemic on the lives of those living with, and/or caring for someone with, dementia. Objectives: The aim of this study was to investigate the experiences of people with dementia and informal carers during the closure of available social and medical services in Poland during the COVID-19 pandemic.

Thu, 09/01/2022 - 11:08

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