Parental experiences and perspectives of end-of-life decision-making in allogeneic paediatric stem cell transplant

Abstract

Background SCT is a potentially curative therapy, yet some children will die. There is little knowledge about parental perspectives on end-of-life (EOL) decision-making. Aim and research questions A better understanding of parental perspectives about EOL decision-making after paediatric SCT can help healthcare professionals (HCP’s) to support parents in decision-making and to improve (after) care. Research question: How do parents experience and perceive EOL decision-making after allogeneic paediatric SCT? Method A retrospective, qualitative study using Grounded Theory. Face to face, in-depth open interviews with twelve individual parents were conducted and analysed qualitative. Interviews were coded and categorized; derived themes were described. Results Three categories about parental experiences were identified: 1) ‘dealing with decision-making’ with themes: trusting and hoping for victory, developing a frame of reference, struggling with suffering, preventing anticipated regret; 2) ‘making the most of opportunities’ with themes: trusting the Health Care professional, having a critical attitude; and 3) ‘being a good parent’ with themes: following the child, keeping going, feeling retrospective doubts, experiencing feelings of loss Conclusion During SCT parents did not experienced they had to make decisions, but they follow all possible treatment options offered by the HCP’s; during EOL some parents had to decide to stop further treatment and parental considerations aimed to avoid further suffering. Recommendations The parental experiences provide insight for HCP’s in how to support parents in taking decisions. It demands reflection of the team about when and in what way they inform parents and children about an eventually upcoming death during SCT. Ethnographic, prospective research with HCP’s, parents and perhaps the involved patients is suggested to gain further insight.