Family-oriented Palliative Care: Parents' Perspective And Experience


Family-oriented Palliative Care: Parents' Perspective And Experience


Pietz J


DOI: 10.1055/s-0036-1583746






Family Study; Palliative Therapy; Brain Damage; Child; Chromosome Disorder; Chromosome Disorders; Complication; Controlled Study; Dyspnea; Gene Deletion; Hospice; Hospital; Human; Length Of Stay; Life Expectancy; Medical Service; Metabolic Disorder; Neuromuscular Disease; Only Child; Pain; Palliative Care; Quality Of Life; Seizure; Spasticity; Spiritual Care; Symptom


Palliative care is needed for children with neurodegenerative and progressive neuromuscular diseases, inborn genetic (e.g., chromosomal disorders, deletion syndromes) or metabolic disorders, as well as for children with early brain lesions which can decrease life-expectancy due to complications. Care for children with life-shortening diseases is a major challenge for parents and the whole family. A vast majority of families prefer to live at home with their severely sick child, and they also want to avoid admissions to hospital and stay at their familiar environment for the final period of life. To cope with all these demands, many families need a lot of support. By means of early integration of palliative perspective and care support can be adapted to the needs of the child and the family. Many children are living at home with their parents for many years. In many cases, quality of life and a stable familiar environment can be assured only by substantial external assistance. Support by specialized palliative care teams (SAPV), hospices and hospice services is able to unburden families. Important tasks are continuous and 24-hour medical services for symptom control (regarding e.g., pain, dyspnea, seizures, spasticity) as well as psychological, emotional, social and spiritual care for patients and all other family members.


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June 2017 List

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Pietz J, “Family-oriented Palliative Care: Parents' Perspective And Experience,” Pediatric Palliative Care Library, accessed July 13, 2024,