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Caring for a Child with Phenylketonuria: Parental Experiences from a Eurasian Country

Objectives: Phenylketonuria (PKU) and mild hyperphenylalaninemia (HPA) are characterized by increased blood phenylalanine concentrations varying from mild to severe. Management of PKU was reported to be time consuming and burdensome for caregivers. This study intended to explore the experiences of families caring for a child with PKU/HPA in a country with a high PKU rate.

Tue, 12/13/2022 - 11:13

Walking in the shoes of caregivers of children with obesity: supporting caregivers in paediatric weight management

To incorporate the perspectives and experiences of family caregivers of children with obesity, the KidFit Health and Wellness Clinic, a paediatric weight management programme, embedded feedback opportunities into various stages of programme development. Caregivers were eligible to participate if their children had completed initial 4-week group-based pilot programming or were currently receiving treatment in 10 or 12 week group-based programming. Data were collected through feedback session discussions, audio-recorded, transcribed verbatim and analysed thematically.

Tue, 12/13/2022 - 11:06

The Effectiveness of Parenting Interventions on Psychosocial Adjustment in Parents of Children and Adolescents with Type 1 Diabetes: A Meta-Analysis

Aims: Parenting interventions in this review refer to supportive parenting training provided for parents or primary caregivers of children and adolescents with type 1 diabetes mellitus (T1DM). The review aimed to synthesize evidence about parenting interventions in parents or caregivers of children and adolescents with T1DM, and to evaluate the effect of interventions in reducing parents' or caregivers' psychological distress, helping them share diabetes management responsibility, seek social support, and improve their quality of life.

Tue, 12/13/2022 - 10:54

Exploring the impact of paediatric localized scleroderma on health-related quality of life: focus groups with youth and caregivers

Background: Paediatric localized scleroderma (LS) can negatively impact health-related quality of life (HRQoL) by causing skin fibrosis, abnormal limb development, disfigurement, and side-effects from immunosuppressive treatment. Studies to date have rarely included qualitative data gathered directly from paediatric patients with LS.

Objectives: To assess the impact of LS on HRQoL among affected youth and their caregivers using qualitative description.

Tue, 12/13/2022 - 10:42

Racial Minority Families' Preferences for Communication in Pediatric Intensive Care Often Overlooked

Objective: To compare the communication experiences and preferences of racial/ethnic minority and non-Hispanic white (NHW) families in the pediatric intensive care unit (PICU), including their interactions with bedside nurses.

Tue, 12/13/2022 - 10:27

Influence of the informal primary caretaker on glycemic control among prepubertal pediatric patients with type 1 diabetes mellitus

Objectives: In prepubertal type 1 diabetic patients (DM1), the availability of an informal primary caregiver (ICP) is critical to making management decisions; in this study, the ICP-related risk factors associated with glycemic control were identified.

Tue, 12/13/2022 - 10:20

Evaluating the impact of a community-based parent training programme for children with cerebral palsy in Ghana

Background: In low and middle-income settings, where access to support and rehabilitation services for children with disabilities are often lacking, the evidence base for community initiatives is limited. This study aimed to explore the impact of a community-based training programme for caregivers of children with cerebral palsy in Ghana.

Tue, 12/13/2022 - 10:00

What do family caregivers do when managing medications for their children with medical complexity?

Using a work domain analysis and complementary thematic analysis, this paper aims to describe medication management work, its constraints, and complexities from the perspectives of family caregivers of children with medical complexity-a medically fragile segment of the pediatric population often dependent on multiple and complex medication regimens for survival and optimal functioning.

Mon, 12/12/2022 - 13:24

Peer support interventions for parents and carers of children with complex needs

Background: Parents and family carers of children with complex needs experience a high level of pressure to meet children's needs while maintaining family functioning and, as a consequence, often experience reduced well-being and elevated psychological distress. Peer support interventions are intended to improve parent and carer well-being by enhancing the social support available to them. Support may be delivered via peer mentoring or through support groups (peer or facilitator led).

Wed, 08/10/2022 - 14:33

Quality of Life Among Primary Family Caregivers of Patients with Heart Failure in Southwest China

Purpose: The aim of this study was to investigate the quality of life (QOL) and to identify the factors (characteristics of patients and caregivers, caregiver burden, self-efficacy, and social support) related to QOL among family caregivers of patients with heart failure (HF) in Southwest China.; Design: The study had a cross-sectional descriptive design.; Methods: Patients and their family caregiver dyads (N = 251) in three hospitals in Chengdu were recruited from April 2013 to September 2014. Data were collected by in-person interviews.

Wed, 06/06/2018 - 13:00