Jour

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.

An understanding of health related quality of life (HRQoL) in children and families affected by methylmalonic acidemia (MMA) is important in planning counseling and therapeutic intervention. Liver transplantation (LT) is used as a treatment for MMA; however, its risks and benefits continue to be investigated. The purpose of this study was twofold: (1) to measure HRQoL in children and families affected by MMA using the Pediatric Quality of Life Inventory (PedsQL™) parent version, and (2) to assess the impact of LT on HRQoL by comparing LT and non-LT patient scores and free responses.

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.

Background: Wheezing is an important health problem in Thailand especially among preschool age.; Objective: The aim of this study was to estimate costs of wheezing for hospitalization in preschool children under patient, provider, and societal perspectives.

This study aimed to show simulation improves confidence and competence in caregivers of children with a tracheostomy and examined the impact on patient emergency department visits and mortality. All participants received standard classroom training. One group also received training using simulation. Confidence at post-test was significantly greater in the simulation group. Correlation between post-test confidence and competency measures was not statistically significant.

Objective: To explore the experiences, expectations, and motivations of parents/caregivers of children with otitis media who were booked to undergo tympanostomy tube insertion.

Method: A cross-sectional cohort study was conducted using semistructured interviews with 39 parents. Interviews were conducted via telephone and analyzed for key themes.

Family carers of children with serious illness contribute many hours of medical care in addition to usual daily care. Assessing the needs and supports of family carers is not routine practice. This study is the first to utilize the interRAI Family Carer Needs Assessment in carers of children, seeking to evaluate and improve its ability to capture their needs. This is a prospective pilot study of family carers of children with serious illness receiving care at a pediatric hospice. Thirty carers completed the self-assessment form.

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.

Background: "Normalization" refers to the process whereby a household with a chronically ill member returns to a normal life to reduce its distress. There has been no valid and reliable instrument to investigate such normalization in Taiwan.

Objective: The aims of this study were to develop and validate a Chinese version of the Normalization Assessment Measure for Caregivers of Children With Cancer (NAM-CCC).

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.