The Lived Experiences of Parents Having a Child With a Brain Tumor During the Shared Decision-Making Process of Treatment.

BACKGROUND A pediatric brain tumor requires multimodal therapy that can have serious effects on the ill child that can involve shared decision-making (SDM). Understanding this experience of SDM from the parents' point of view is understudied. OBJECTIVE The aim of this study was to explore the nature of lived experiences of parents during the SDM process when their child is being treated for a brain tumor. METHODS This was a descriptive phenomenology study using in-depth interviews with parents who had a child with a brain tumor. RESULTS Six major themes emerged: (1) early confusion associated with medical decision-making, (2) determining treatment via decision-making, (3) faith strengthening the direction of decision-making, (4) constructing consensus based on partnership, (5) adjusting lifestyle to coexist with the illness, and (6) positive energy and abundant support are able to open a window to the soul. CONCLUSION Shared decision-making is a process, and the experiences start with parental confusion about medical treatment. The process involves building a trusting relationship with health professionals that includes sharing medical treatment information and is eventually associated with normalizing the life of both the child and the rest of the family. IMPLICATIONS FOR PRACTICE Trusting relationships and partnership are vital for SDM to be successful. It is essential during the SDM process to strengthen parental resilience by supplying sufficient information and to support parental efforts to normalize their family life.