English

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.

This integrative literature review examines the facilitators and barriers to open and clear parent-child communication in the context of childhood cancer (for this literature review, child refers to ages 0 to 19 years). The Resilience in Illness Model (Haase et al., 2017) was employed to organize the findings and link to resilience outcomes among children with cancer. In a search of three international databases (PubMed, CINAHL, and PsycINFO), 18 studies met inclusion criteria and were selected for review.

PURPOSE: To examine the family communication experience of Korean adolescents with cancer and their parents, including how adolescents and their parents verbally share feelings and concerns related to the adolescent's cancer diagnosis with one another, and how emotional communication affects parent-adolescent relationships and the family's coping abilities.

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

Objective: To know the experiences of family members of children with cystic fibrosis under the light of the theory of Callista Roy.

Method: Qualitative research that used the adaptation theoretical framework of Callista Roy for inductive content analysis. Fifteen family members, in a university hospital, between 23 and 63 years old, participated in the study, from September to October 2018.

Background: Autism spectrum disorders (ASDs) are characterised by impairments in communication and reciprocal social interaction. These impairments can impact on relationships with family members, augment stress and frustration, and contribute to behaviours that can be described as challenging. Family members of individuals with ASD can experience high rates of carer stress and burden, and poor parental efficacy.

Various care approaches are provided to support families with newly diagnosed children in their task of diabetes management. We conducted qualitative interviews with 36 parents of 23 children, newly diagnosed with type 1 diabetes. The parents were recruited from participants in a Randomized Controlled Trial (RCT) evaluating hospital-based care (HBC) and hospital-based home care (HBHC), to explore their experiences of two different approaches to diabetes care. The HBC was considered as being safe but not family- or diabetes-oriented.

Rates of engagement in mental health care are disproportionately low for low-income, racial/ethnic minority youth. We will present novel research on caregiver-reported challenges to engagement in care, and the results of research on strategies supporting caregivers to overcome barriers to engagement.

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.