English

Disability in a child not only affects the child but also presents socioeconomic and psychological impacts to the child's family. This study aims to describe the service needs of caregivers of children with disabilities in the state of Penang, Malaysia, and to determine the child and family characteristics predisposing to having more caregiver needs. A cross-sectional survey was conducted between February and June 2013 among caregivers of children aged 0-12 years with disabilities registered with the Penang Department of Social Welfare.

Objective: Caregivers of cancer patients face intense demands throughout the course of the disease, survivorship, and bereavement. Caregiver burden, needs, satisfaction, quality of life, and other significant areas of caregiving are not monitored regularly in the clinic setting, resulting in a need to address the availability and clinical effectiveness of cancer caregiver distress tools.

This guideline covers interventions and support for children, young people and adults with a learning disability and behaviour that challenges. It highlights the importance of understanding the cause of behaviour that challenges, and performing thorough assessments so that steps can be taken to help people change their behaviour and improve their quality of life. The guideline also covers support and intervention for family members or carers.

Introduction: With better medical care, patients with Duchenne muscular dystrophy (DMD) now live longer but face more complex medical and social needs. This study described the perceptions of DMD patients and their families of disease-specific palliative care services in Singapore.

Background: Gluten-free and casein-free diet is frequently used in the support of therapy of children with autism spectrum disorders. In addition, many parents restrict the consumption of simple sugars for their children.

Objective: The aim of this paper was to understand factors influencing purchase decision in case of family with children with autism spectrum disorders on gluten-free and/or casein-free and/or sugar-free diet and the difficulties associated with this type of nutrition.

Aim: To increase understanding of grandparental grief following the death of a grandchild from a life‐limiting condition.

Design: Meta‐ethnography.

Data sources: Academic Search Complete CINHAL, Embase, psycINFO, PubMed and Web of Science, supplemented by manual search strategies (in 2015, updated 2018).Review methodsStudies were appraised and synthesized using the principles of meta‐ethnography.

Traditionally, family-focused care extends to parents and siblings of children with life-limiting conditions. Only a few studies have focused on the needs of grandparents, who play an important role in the families of children with illness and with life-limiting conditions, in particular. Interpretative phenomenological analysis was used as the methodological framework for the study. Seven bereaved grandparents participated in this study. Semistructured, individual, face-to-face interviews were conducted.

Objective: We evaluated whether educational material about hydrocephalus and its treatment previously developed by health professionals corresponded with the daily life of caregivers of children with hydrocephalus.

Methods: We conducted a qualitative study at a university hospital in Brazil, interviewing 32 informal caregivers of children with hydrocephalus. The methodological framework of Bardin content analysis was used to analyze the data. 

Patients and their families have expressed that they want information (Hendricks, 2000) and as a result often turn to Google for health and medical information. Society as a whole is more informed than ever and no longer rely only on medical practitioners as in previous generations. Instead, and rightly so, they question medical experts and want to know the reasoning and rationale behind everything they experience. This combined with the shift towards family-centred principles over the last 20 years underscores the need to provide comprehensive and effective education to families.

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.;