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Caregiver burden

The Effects of Caring for Young Children with Developmental Disabilities on Mothers’ Health and Healthcare Use: Analysis of Primary Care Data in the Born in Bradford Cohort

We explored the association between caregiving for preschool children with developmental disabilities and maternal health and healthcare use using linked primary care and Born in Bradford birth cohort data. Adjusting for prenatal health, healthcare use and socioeconomic status, mothers who were caregivers were more likely than other mothers to have symptoms of psychological distress (odds ratio 1.24; 95% CI 1.01, 1.53), exhaustion (1.42; 1.12, 1.80) and possibly head and musculoskeletal pain (1.18; 0.97, 1.43).

Tue, 01/17/2023 - 16:22

Correlates of Subjective Caregiver Strain in Caregivers of Youth Evaluated in a Pediatric Psychiatric Emergency Room

Background: Although caregiver burden is relevant to the outcome for psychiatrically ill youth, most studies have focused on caregiver burden in the community or research settings. Therefore, we aimed at evaluating the subjective caregiver strain (SCS) at the time of presentation of youth to a pediatric psychiatric emergency room (PPER), assessing potential correlates to provide leads for improvements in formal support systems.

Tue, 01/17/2023 - 09:25

Impact of childhood Dravet syndrome on care givers of patients with DS, a major impact on mothers

Background: The aim of this study was to understand the impact of Dravet syndrome (DS) on patients with Dravet syndrome and their families, with a focus on the social and economic impact on both mothers and fathers.

Mon, 01/16/2023 - 13:45

An exploration of caregiver burden for children with nodding syndrome (lucluc) in Northern Uganda

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.

Mon, 01/16/2023 - 13:36

Barriers and Facilitators of Asthma Management as Experienced by African American Caregivers of Children with Asthma: An Integrative Review

African American children with asthma demonstrate significant health disparities and poor health outcomes. Understanding the burdens faced by parents and caregivers of children with asthma may be helpful to develop future interventions to address this disparity. The purpose of this integrative review was to reveal the barriers and facilitators of child asthma management experienced by African American caregivers. Whittemore and Knafl's (2005) method of integrative review was used to review 40 articles.

Wed, 01/11/2023 - 12:53

Initial Challenges of Caregiving During COVID-19: Caregiver Burden, Mental Health, and the Parent-Child Relationship

Research confirms that the mental health burdens following community-wide disasters are extensive, with pervasive impacts noted in individuals and families. It is clear that child disaster outcomes are worst among children of highly distressed caregivers, or those caregivers who experience their own negative mental health outcomes from the disaster. The current study used path analysis to examine concurrent patterns of parents' (n = 420) experience from a national sample during the early months of the U.S. COVID-19 pandemic.

Fri, 01/06/2023 - 17:21

Analysis of the caregiver burden associated with Sanfilippo syndrome type B: panel recommendations based on qualitative and quantitative data

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.

Thu, 01/05/2023 - 18:19

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

Caregivers' voices: The experiences of caregivers of children who sustained serious accidental and non-accidental head injury in early childhood

Head injury is a leading cause of mortality and acquired neurological impairment in children. Head-injured children may have neurobehavioural deficits that persist for years following injury. Head injury can result in significant and persistent caregiver burden, including mental health issues, family stress and disorganisation, and unmet social and healthcare service needs. Few studies have examined the healthcare and social service needs of children and their families following head injury sustained at an early age.

Tue, 12/13/2022 - 16:35

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