Parents' perspectives on the important aspects of care in children dying from life limiting conditions: A qualitative study

ABSTRACT

Introduction: The importance of Paediatric Palliative Care (PPC) is increasingly recognised worldwide, with the World Health Organzsation (WHO) and the American Academy of Pediatrics (AAP) endorsing the development and wide availability of PPC. When these children are in the terminal phase of their illness, PPC should be tailored to the different needs and desires of the child and the family, with the goal of providing the best possible quality of life (QOL) for the days that remain. Method: Malaysia has yet to develop a national PPC policy. In anticipation of this, as part of a needs based qualitative study, parents’ views were solicited, as to the unmet needs of their children during the terminal phases of their illness. A purposive sampling was conducted amongst fifteen parents of nine deceased children (ages 2-14 years, eight cancer, one Prader Willi Syndrome) who had received care in the Paediatric Department, Malacca General Hospital, a Malaysian government hospital. Two focus group discussions and three in-depth interviews were conducted, based on a semi-structured interview guideline. The interviews were audiotaped with permission and the tape recordings were transcribed verbatim. The data were managed and analysed by NVivo 9 software using a thematic analysis approach. Results: The frequently emerging themes were the strengths and weaknesses pertaining to the healthcare system, processes within palliative care. These were symptom control, closed communication and lack of support and anticipatory guidance as death approached. Conclusion: Dying Malaysian children and their families deserve to receive care that is more consistent with optimal palliative care.