Objective: The national Hospital Clinical Research Program (PHRC) called Assessment of clinical practices of palliative care in children with Spinal Muscular Atrophy Type 1 (SMA 1) was conducted to depict palliative practices in that fatal disease,…
Background: Inpatient hospice care (IHC) for adults in Germany is used in the last weeks of life. Children, adolescents and young adults (ACA) with life-limiting diseases are entitled to 28 days/year of IHC during their lifetime. We explored various…
Background: Emily's House Children's Hospice (EH) located in Toronto, Canada provides residential hospice services to children living with serious medical conditions. The use of music therapy to ameliorate anxiety and pain is well documented in…
Being able to communicate effectively is an essential skill for all nurses. Communication in paediatric end of life care can be challenging for both the student and lecturer as it is a rare experience and challenging to teach. Innovative approaches…
This study explored parents' experiences of services for children with life-limiting neurodevelopmental disabilities (LLNDD) using mixed methods. The study included a quantitative survey (n = 63) and qualitative interviews (n = 12), with a focus on…
Background: Most parents vividly recall the weeks, days, and moments preceding their child's death for years to come. Dissatisfaction with communication about their child's condition and lack of guidance can contribute to stress prior to a child's…
Little is known about how nursing care at the end of a child's life impacts long-term parental bereavement. We aimed to explain, contextualize, and examine comparisons between quantitative trends in children's end-of-life care and parents'…
PURPOSE: To examine the experiences of parents who are caring for a child with a life-threatening or life-limiting illness (LTI/LLI) including levels of uncertainty, distress, hope, and self-efficacy to determine if there are significant variations…
Background and Aims: Grief in parents has been described as a very intense long-lasting experience, characterized by deep sadness, and social isolation, therefore, the recommendation of scientific societies in pediatrics is to provide bereavement…
Background More young people with complex life-limiting conditions are living into adulthood, generating greater demand for appropriate care (Fraser, Gibson-Smith, Jarvis, et al., 2021. Palliat Med. 35:1641). We implemented Project ECHO (Extension of…
