Community-based services for children dying from nonmalignant diseases are under-resourced
MedWire News: The community-based services available to children dying from nonmalignant diseases are poorer than those available to children dying from malignant diseases, shows research.
When bereaved parents were asked about the care their children had received at end of life, some major differences arose between the accounts of parents of children who had received nonmalignant diagnoses and those who died from cancer.
"Within the context of a vast spectrum of clinical need, existing research focuses predominantly on the care of children with cancer," explain Jayne Price (Queen's University of Belfast, UK) and colleagues. "However, children with non-malignant conditions constitute 60% of those requiring palliative care and early indications suggest distinct needs related to the protracted and sometimes unpredictable nature of their conditions."
The study, published in BMJ Supportive & Palliative Care, was a qualitative approach based on interviews with 25 bereaved parents after the deaths of 16 children; six from cancer and 10 from a nonmalignant condition.
The researchers found that the parents of children with cancer generally thought the care received at the end of life as well resourced and responsive to the child's and the family's needs. However, the parents of children with nonmalignant conditions said that services were under-resourced and not sufficiently responsive, say Price and team.
The researchers also explain that the responses of the parents of the cancer patients tended to be focused around the hope for cure; for the parents of children with nonmalignant conditions there was less emphasis on the possibility of a cure, but with the parents experienced more uncertainty and death was rarely anticipated.
They point out that both groups of patients used words such as "battle," "fight," and "struggle," but the parents of the cancer patients used them to describe the disease, whereas the parents of the children with nonmalignant disease used it to describe the provision of services.
Price and co-workers add that hospice services were most commonly used by the families with children with nonmalignant diseases, which they say past research has suggested is because most oncology centers have the infrastructure to support home care.
"What was unclear from parents' accounts was whether professionals other than those working in the hospice were aware of the criteria for hospice referral or, rather, were reluctant to mention hospice care to parents due, for example to its perceived link with death. Such issues need to be explored both in practice and in future research," say the researchers.
By Chloe McIvor