The supportive and palliative care needs of Australian families of children who die from cancer

Abstract

Care for children and their families should be coordinated by a multidisciplinary team in consultation with children and their families, and should be linked and integrated with the treating hospital in collaboration with community services.

Access to Palliative Care Services: A Qualitative Study of Experiences of Children and Families Attending University Teaching Hospital in Lusaka

“…Most families felt unsupported emotionally and recommended that having a counselor of psychologist would help them to cope in such circumstances. Similar findings have been reported in high income countries were families need psychological support to cope with caring for a sick child [10]. Unfortunately, this service was not routinely available at UTH.…”

“…Many families expressed were emotionally and financially burden of caring for their child with incurable cancer. Pain management was another aspect of care by which was of concern to the parents and guardians [10].…”

When a Child Dies: Parents' Experiences of Palliative Care—An Integrative Literature Review

“…Parents described that general information from the nurses on the ward was important and that this should be delivered in everyday language that was easy for both parents and the child to understand (Contro, Larson, Scofield, Sourkes, & Cohen, 2002;Monterosso, Kristjanson, & Phillips, 2009;Weidner et al, 2011;. Parents appreciated that bad news regarding diagnosis, treatment, prognosis, or news that their child was dying were conveyed directly and honestly, and preferably with compassion and caution, in a hopeful way, from a person known by the parents.…”

The role of nursing in pediatric palliative home care – Experiences from Lower Saxony, Germany

“…Concerning the transition from inpatient to outpatient pediatric palliative care, the information flow and communication, especially between children's hospital staff and both resident pediatricians and parents, has to be improved, because the quality of pediatric palliative care also depends on trans-sectoral cooperation [30,31] . Hospital-based palliative care consultants can be very helpful to support the pediatricians and consolidate relationships between hospital staff and community health care providers [32] .…”