Parents

Background: Many rare diseases of childhood are life-threatening and chronically debilitating, so living with a rare disease is an on-going challenge for patients and their families. MPS is one of a range of rare inherited metabolic disorders (IMDs) that come under category 3 of life-limiting conditions, where there is no curative treatment available at present.

Objective: To assess the lived experience of parents whose child has suffered a stroke.

Background: Few studies have been conducted on the burden of care in caregivers of children with chronic illnesses. This study investigated the burden of care and associated factors in first-degree caregivers of children and adolescents with chronic conditions. Methods: A cross-sectional study was conducted from June to September 2017 on 385 first-degree caregivers of children and adolescents with chronic disorders.

Background: Parents caring for children with complex and long‐term conditions at home take on responsibility for technical health‐care procedures that may cause their child distress. Little evidence exists about parents’ experience of this specific aspect of their caring role.

Aims: To explore and understand parents’ experiences of administering distressing health‐care procedures as part of caring for their child at home.

This quality improvement project aimed to identify barriers and opportunities for successful transition from pediatric to adult health care for a clinic sample of youth with spina bifida. Pediatric patients (N = 16) with spina bifida between the ages of 14 and 21 years and a family member were recruited from the Spina Bifida Clinic at a large regional medical center to participate in a face-to-face semi-structured interview.

Caregivers of patients with ASD have reported dissatisfaction with healthcare experiences due to the lack of healthcare provider confidence, knowledge, and skills in managing the challenging behaviors associated with ASD (Bultas & McMillin, 2016). As healthcare professionals, there is a need for continuous education regarding ASD to increase healthcare provider confidence in working with this population, as well as improve overall healthcare experiences for patients with ASD and their families.

Objectives: To explore parents’ experiences of transition and aftercare following their child’s discharge from a paediatric intensive care unit to an in-patient ward.

The purpose of this study is to analyze the experience of hope that appears in a parent's blog presenting everyday life while caring for a child with Trisomy 18 (Edwards syndrome). The author, Rebekah Peterson, began her blog on 17 March 2011 and continues to post information on her son Aaron's care. The analysis of hope in the blog is carried out using a mixed methodology: initial and focused coding using Charmaz's constructed grounded theory and elements of Colaizzi's method.

Background/objectives: The effect of pediatric psoriasis on quality of life has been demonstrated, but data regarding its influence on caregiver quality of life are scarce. The objective was to investigate how psoriasis affects quality of life of children and their caregivers.;

Although stigma related to developmental disorders (DD) has been associated with poor mental health among caregivers, an in-depth understanding of factors that influence internalisation of stigma by caregivers is missing. The aim of our study was to explore perceptions and experiences of stigma among parents of children with DD in Ethiopia and examine the contributing and protective factors for internalised stigma based on the perspectives of the parents themselves.