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Springer International

Quality of life in caregivers of young children with Prader-Willi syndrome

Background: This study aimed to measure quality of life (QOL) in primary caregivers of young childrenwith Prader-Willi syndrome (PWS).

Methods: The caregivers of 32 children aged from 6.1 to 71.2 months completed the Chinese version of the World Health Organization Quality of Life-BREF (WHOQOL-BREF). We also evaluated the social adaption capacity of these children with Infants-Junior Middle School Students' Social-Life Abilities Scale. Correlation test was used to explore the related factors to caregivers' QOL.

Tue, 01/17/2023 - 16:47

Medical alert card: a valuable tool in the management of Hirschsprung's-associated enterocolitis from parental perspective

Purpose: Awareness of Hirschsprung's-associated enterocolitis (HAEC) among patient's families and medical staff can lead to prompt recognition of symptoms and earlier implementation of management. We designed an HAEC medical alert card to raise awareness of HAEC among medical staff and carers of children with Hirschsprung's disease (HD).

Tue, 01/17/2023 - 08:46

Caregiver burden in pediatric dialysis

In spite of improvements in expected survival, neurodevelopmental outcome, and quality of life, decision-making in neonatal dialysis remains controversial in high-resource countries. In part, this may be based upon the significant burdens experienced by the child, and also those experienced by the parents as caregivers. Emerging research offers a clearer description of the burdens experienced by dialysis caregivers worldwide.

Tue, 12/13/2022 - 15:57

Determinants of quality of life among family caregivers of adult cancer patients in a resource-limited setting

Purpose: In resource-limited settings, family caregivers (FCGs) of adult cancer patients (ACPs) function in a context marred by high patient symptom burden, limited cancer care services and support and high caregiving burden. Despite this predicament, little is known about the quality of life (QoL) of FCGs in these settings. The study aimed to explore the determinants of QoL among FCGs of ACPs in Uganda.; Methods: A cross-sectional design was used to collect data from 284 FCGs of ACPs.

Tue, 09/10/2019 - 16:22

Dementia Family Caregivers' Willingness to Pay for an In-home Program to Reduce Behavioral Symptoms and Caregiver Stress

Objectives: Our objective was to determine whether family caregivers of people with dementia (PwD) are willing to pay for an in-home intervention that provides strategies to manage behavioral symptoms and caregiver stress and to identify predictors of willingness-to-pay (WTP).; Methods: During baseline interviews of a randomized trial and before treatment assignment, caregivers were asked how much they were willing to pay per session for an eight-session program over 3 months.

Wed, 06/19/2019 - 09:55

Priorities of a "good death" according to cancer patients, their family caregivers, physicians, and the general population: a nationwide survey

Purpose: Understanding the concept of a "good death" is crucial to end-of-life care, but our current understanding of what constitutes a good death is insufficient.

Wed, 06/05/2019 - 16:13

On the road and away from home: a systematic review of the travel experiences of cancer patients and their families

Purpose: Traveling for cancer care is difficult as patients might be suffering from the side effects of treatment, need to cover additional costs, and face disruption of daily life. The aim of this review was to synthesize the evidence on travel needs and experiences during cancer treatment from the point of view of patients and their families.; Methods: This is a systematic review of the literature. The PRISMA statement was used to guide the reporting of the methods and findings.

Wed, 06/05/2019 - 13:22

The role of flexible goal adjustment in the effect of informal caregiving on depressive symptoms: Evidence of a large population-based longitudinal study in Germany from 2002 to 2011

Objectives: To determine the role of flexible goal adjustment in the impact of informal caregiving on depressive symptoms, using a longitudinal approach. Method: Data were gathered from the German Ageing Survey. This is a population-based longitudinal study among community-dwelling individuals aged 40 and above in Germany. Data were derived from the second (2002), third (2008) and fourth (2011) wave, drawing on 10,994 observations. Flexible goal adjustment was assessed using a scale by Brandstädter and Renner.

Mon, 03/11/2019 - 12:10

Health-related quality of life in Spanish informal caregivers: gender differences and support received

PURPOSE: We analyzed gender differences in health-related quality of life (HRQoL) and associated factors between informal male and female caregivers in Spain. It is important because of growing rates of dependent people and dwindling public resources. METHODS: We conducted a cross-sectional study of 610 informal caregivers (265 male and 345 female) using an ad hoc structured questionnaire.

Thu, 03/07/2019 - 15:03

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