Journal article

Background: Sanfilippo syndrome type B (Sanfilippo B) belongs to a group of rare lysosomal storage diseases characterized by progressive cognitive decline from an early age, acute hyperactivity, and concomitant somatic symptoms. Caregivers face a unique set of challenges related to the complex nature of Sanfilippo B, but the burden and impact on quality of life (QoL) of caregivers is poorly defined and best practice guidance for clinicians is lacking.

Most studies on the quality of life of caregivers of children with cystic fibrosis (CF) have focused on the mental health of mothers, reflecting a biased underlying assumption that mothers are the primary caregivers. The aim of this study was to explore the experience of fathers caring for a child with CF. Twenty fathers of children with CF were studied via a semi-structured interview using Husserl's (1970) descriptive phenomenology. Fathers were enrolled from two accredited CF centers in Texas.

Cystic fibrosis (CF) is a life-shortening genetic disease with many treatment requirements that necessitate the participation of a caregiver, especially if the patient is a child. We performed an integrated literature review of original research evaluating quality of life in caregivers of patients with CF. We searched the terms quality of life, cystic fibrosis, and caregivers in the MEDLINE, CINAHL, Child Development and Adolescent Studies, PsycARTICLES, and Psychology and Behavioral Sciences Collection databases from 2007 to 2017.

Children affected by HIV and AIDS have significantly higher rates of mental health problems than unaffected children. There is a need for research to examine how social support functions as a source of resiliency for children in high HIV-prevalence settings such as South Africa. The purpose of this research was to explore how family social support relates to depression, anxiety, and post-traumatic stress (PTS).

Objective: Little is known about relations between domains of psychosocial risk among pediatric cancer populations. The Psychosocial Assessment Tool 2.0 (PAT2.0) is one internationally validated screening measure that can examine these relations. This study aimed to examine risk profiles and predictors of these patterns exhibited by American and Dutch families.

Introduction: Congenital Heart Disease (CHD) is a problem with structure and function of the heart that is present at birth. Children with CHD require special care, treatment and follow up for a number of common conditions which may be quite straining to the care givers. The objective of the study was to find out the burden of care among mothers having children with CHD.

Introduction: Children with disabilities have significant health care needs, and receipt of care coordinator services may reduce caregiver burdens. The present study assessed caregivers' experience and satisfaction with care coordination.

Objective: The quality of life (QOL) of caregivers of children with asthma may be related to children's responses to asthma management.

Aim: To evaluate change in QOL over time of caregivers of children with asthma through guideline-based management.

The timing of epilepsy surgery is complex, and there is not a structured pathway to help families decide whether to continue medical management or pursue surgical treatment. We surveyed caregivers of pediatric epilepsy surgery patients. Fifty-eight respondents answered the majority of questions. Thirty caregivers wished their child had undergone epilepsy surgery earlier compared with twenty who felt surgery was done at the appropriate time, and eight were unsure.

Background: The importance of engaging parents in health research as co‐researchers is gaining growing recognition. While a number of benefits of involving parents as co‐researchers have been proposed, guidelines on exactly how effective engagement can be achieved are lacking. The objectives of this scoping review were to (i) synthesize current evidence on engaging parents as co‐researchers in health research; (ii) identify the potential benefits and challenges of engaging parent co‐researchers; and (iii) identify gaps in the literature.