Journal article

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.

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.

Purpose: Parenting stress has been studied as a potential predictor of developmental outcomes in children with normal hearing and children who are deaf and hard of hearing. However, it is unclear how parenting stress might underlie at-risk spoken language and neurocognitive outcomes in this clinical pediatric population. We investigated parenting stress levels and the shared relations between parenting stress, language comprehension, and inhibitory control skills in children with and without hearing loss (HL) using a crosssectional design.

Aim: The Family Empowerment Scale (FES) is a tool, constituted by three subscales (family, services and community), which allows to have a picture of the state of empowerment of informal caregivers (IC) of minors with neurodevelopment disorder. The aim of this study is to present the transcultural validation of the Italian version, the Italian-Family Empowerment Scale (I-FES).

Family caregivers are believed to be the primary source of support for HIV-affected children. There is limited evidence about practices of support for caregivers, to strengthen them and to enhance the welfare of HIV positive children, especially in African settings. Our aim was therefore to illuminate caregivers' lived experiences of caring for a child in Ethiopia 2 years after the child was enrolled in antiretroviral therapy.

Families of children with disabilities or special healthcare needs report respite care as a great need, yet availability of such care is scarce. A partnership developed between a nursing school in the Southeast and a faith community, to provide respite care and summer camps, resulted in a win-win situation for families, children, interprofessional students and educators, the faith community, and volunteers. This article explains the need for respite, how schools of nursing and faith communities can partner, and the benefits to all stakeholders.