caregivers

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.

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.

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 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.

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).

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.

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/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.;