Caregiver

Background: Caregivers of patients with chronic illnesses are often uncompensated for work that is physically demanding, time consuming and emotionally and economically draining. This is particularly true for caregivers of children with nodding syndrome, an emergent neurological disorder of unknown etiology in resource poor settings in Africa. We aimed to explore perceptions of caregivers regarding challenges that a typical caregiver faces when caring for a child with nodding syndrome.

Background: The care demands of children with chronic diseases can affect caregivers' health by imposing caregiving burden to them. The health status of caregivers plays a vital role in the quality of care provided to such children and in their quality of life.; Objective: To determine caregiving burden in caregivers and to identify relevant influential factors.

Family members of children with disabilities have become more involved in their children's care and have adopted the role of primary caregiver. Due to the varying degrees of the condition, children with cerebral palsy (CP) often require greater involvement from their caregivers. Fifteen caregivers for children with CP residing in rural communities of the Western Cape, South Africa, were interviewed to explore the barriers and facilitators that they encountered.

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.

Importance: There is increasing literature on the role of health literacy in asthma outcomes. Despite less than half of Americans having proficient health literacy, health literacy is an essential component in providing quality medical care. Observations: Most of the literature on the impact of health literacy on asthma outcomes is from the adult asthmatic population, where lower health literacy is associated with poorer asthma outcomes, including decreased quality of life, worse asthma control, and more Emergency Department visits for asthma.

Objective: We evaluated whether educational material about hydrocephalus and its treatment previously developed by health professionals corresponded with the daily life of caregivers of children with hydrocephalus.

Methods: We conducted a qualitative study at a university hospital in Brazil, interviewing 32 informal caregivers of children with hydrocephalus. The methodological framework of Bardin content analysis was used to analyze the data. 

Background: The primary caregiver is an important person in the life of patients with JIA. Their reactions depend on social, emotional and economic factors that affect the therapeutic alliance. Some generic instruments have been used to evaluate burden, anxiety, or quality of life of caregivers. This study aims to develop a specific instrument to measure the psychosocial and economic impacts on primary caregivers of patients with JIA.

Many parents of adolescents and adults with autism spectrum disorder experience difficulty accessing appropriate services for their children, and may report low levels of parent self-efficacy. In an effort to identify the factors that contribute to the difficulties these families face, this study examined the role of demographic, systemic, and clinical need variables as they relate to parents’ experience of self-efficacy. Participants included 324 parents of individuals with autism spectrum disorder, 12–25 years of age.

Patients and families affected by various medical conditions report experiencing health-related stigma, which contributes to detrimental physical, psychological, and social outcomes. Sickle cell disease (SCD) is a genetic disorder that affects 89,000 individuals in the United States and is often associated with negative stereotypes and incorrect assumptions. The present study explored the perception of stigma as reported by caregivers of adolescents with SCD. Focus groups were conducted with 20 caregivers of patients with SCD. Focus groups were audio recorded and transcribed.

Objectives: (1) To better outline quality of life outcomes in paediatric tracheostomy patients and their caregivers. (2) To establish whether quality of life outcomes for children are associated with those of their caregivers. (3) To establish whether quality of life outcomes were associated with the demographic and clinical variables of age, duration of time with a tracheostomy, number of comorbidities, and ventilator dependence.