Decision Making Process Of Parents With Seriously Ill Children At The Hospital


Decision Making Process Of Parents With Seriously Ill Children At The Hospital


Misko M; Bousso R; Santos MR



Journal Of Pain And Symptom Management





Identify the core category for parents of a seriously ill child about the decision making process at the hospital.

Identify parents' preferences when they have to make a decision on behalf of their seriously ill child.
Original Research Background

Changes related to the decision making of parents of seriously ill children at the hospital have been reported in the literature, emphasizing the active role of parents and professionals in sharing information. Professionals are unprepared to deal with the dying process, and parental involvement in decisions is important for the care and future of the family.

Research Objectives

This study aimed to understand the experience of parents of seriously ill children regarding the decision-making process in the hospital.


This is a qualitative study using Symbolic Interactionism and Grounded Theory as theoretical and methodological framework. Data collection was performed in a pediatric hospital in São Paulo, through active observation, hospital records and semi-structured interviews with 10 parents who had their children hospitalized with a life-threatening condition during the data collection period. The interviews were recorded and transcribed. Data was analyzed following the procedures of the Grounded Theory.


After the theoretical saturation had been reached, it was possible to propose a theoretical model to explain the decision-making process of parents by the core category: Being good for my child is being good to me, and the following categories: being scary, recognizing that everything is being done for the child, needing information, deciding about the participation in decision-making, having faith and hope, and valuing a relationship of trust with health providers.


The results indicate that parents’ experience in decision-making is related to individual preferences and the relationship with the healthcare team, which allow them to trust some decisions to physicians and to play an active role as their children’s s advocates.

Implications for Research, Policy or Practice

Ensuring family care, from what parents consider good for their child, allows nurses to guarantee the active role of parents in the decision-making process.


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Citation List Month

March 2016 List


Misko M; Bousso R; Santos MR, “Decision Making Process Of Parents With Seriously Ill Children At The Hospital,” Pediatric Palliative Care Library, accessed August 5, 2021,

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