Article citation: Jayne Price, Joanne Jordan, Lindsay Prior, Jackie Parkes; ‘Comparing the needs of families of children dying from malignant and non-malignant disease: an in-depth qualitative study’; BMJ Supportive and Palliative Care (2012; 2: 127-132)
Abstract, Full Text, PDF

Our journal club appraised with interest the study of Jayne Price and colleagues, which compared the needs of families of children dying from malignant and non-malignant disease and how paediatric palliative care still needs improvement, especially for those children with non-malignant life-limiting conditions.

This qualitative study only compared the needs of families of children with malignant and non -malignant diseases; group 1 v groups 2-4, although it would have been interesting to see which children in groups 2 to 4 have the most and least support.

With regard to the study design, participants were recruited from the children’s cancer unit and regional children’s hospice, although information is not given about what proportion these are of all the children who died during the study period. The methods of recruitment were also unclear, including how many refused to participate, their reasons and where the interviews took place.

Although ethics approval was granted and interviews were recorded with permission, it was not clear how ethical standards were maintained or how the issues around the consent and confidentiality were handled during and after the study.

Finally, we agree that future research needs to examine professionals’ awareness of the criteria for hospice referral and whether there is reluctance to discuss hospice care with parents because of the perceived link with death. This will hopefully lead to improvements in children’s palliative care service provision.

Mya M Aye, Paediatric SPR
Dr Martin Samuels, Consultant Paediatrician