Exploring Parental Decision Making for a Child With a Life-Limiting Condition

Abstract

The purpose of this study was to explore parents' and health care professionals' perception of parents' experiences in making decisions between acute and palliative therapies along the trajectory of their child's lifelimiting condition. An interpretive description qualitative study was conducted. Semistructured interviews were completed with 6 parents and 6 health care professionals. Qualitative thematic analysis was used to identify, analyze, and report 4 themes: (1) "Going by your heart and gut": the process of making a unique decision; (2) "Not black and white": experiencing decisional conflict when making difficult decisions; (3) "Widening the circle of care": various sources of decision-making support; and (4) "Always a worry": concerns regarding parents' decision quality and outcomes. Parents described experiencing decisional conflict when making health care decisions for their child with a lifelimiting condition. Decision support provided by health care professionals in an interprofessional manner was preferred and supplemented by a parent-based support network. Reassurance regarding their good parenting from health care professionals was described as supportive throughout the decision-making experience.

Parents’ experiences of being involved in medical decision-making for their child with a life-limiting condition: A systematic review with narrative synthesis

“…[52][53][54]57 Additionally, some parents were worried about how their decisions will impact the child. 52,53 The location in which decisions were made further compounded these challenges, as parents experienced difficulties in anticipating the impact of their decisions on everyday life at home when the decision was made when the child was still in the hospital environment. 44,52,56 Losing control of the situation.…”

“…35,39,44,56,63 In several studies parents were required to make decisions while not knowing what the outcome would be and whether their treatment decision would help their child or not. 48,49,52,53 This is closely linked with the subtheme Difficulty to foresee the future. With some decisions, including long-term ventilation and end-of-life decisions, parents found it difficult to accept the seriousness of the situation and were in denial about the possibility their child might die in the near future.…”

“…40,48,50,52,56,57,62 Some parents experienced inner conflict and cognitive dissonance, which then affected their ability to make decisions. 48,52,56,57 For others, the decision-making process was a frustrating experience, especially when the decision did not lead to the expected outcome or when parents felt they were not involved in the process. 61,63 Range of emotions.…”

“…Being a parent of a child with a life-limiting condition and making decisions about their healthcare was connected with the feeling of guilt. 38,39,40,45,49,51,52,[58][59]61 Parents felt guilty for multiple reasons, including not being active in the decision-making process; letting the doctor decide; making decisions which could cause the death of their child; giving up on the child and undermining their child's will to live. Additionally, parents were anxious that their decisions would make them feel guilty in the future, and this made it more difficult for them to participate in the decision-making process.…”

“…36,38,43,48,50,52,53,56,57,60,63 The experience of decisionmaking was less stressful if parents were engaged in the process, given professional guidance, treated with respect and received support from clinicians. 36,38,50,52,57,60,63 Having enough information. Having sufficient information was particularly emphasised as important in the active participation in the decision-making process.…”