Parenting in Childhood Life-Threatening Illness: A Mixed-Methods Study

Parenting in Childhood Life-Threatening Illness: A Mixed-Methods Study

Mooney-Doyle K; Deatrick JA; Ulrich CM; Meghani SH; Feudtner C

Journal of Palliative Medicine

2018

child parent relation; palliative therapy; Child; Decision Making; Only Child; decision making; human experiment; sibling; child; human; female; male; article; controlled study; perception; childhood; interview; problem solving; social work

Background: Parenting children with life-threatening illness (LTI) and their healthy siblings requires parents to consider their various needs. Objective and Methods: We conducted a concurrent, cross-sectional mixed-methods study to describe challenges parents face prioritizing tasks and goals for each child with qualitative data, compare parents' tasks and goals for children with LTI and healthy siblings with quantitative data, and describe parenting in terms of the process of prioritizing tasks and goals for all children in the family. Results: Participants included 31 parents of children with LTI who have healthy siblings and were admitted to a children's hospital. Qualitative interviews revealed how parents managed children's needs and their perceptions of the toll it takes. Quantitative data revealed that parents prioritized "making sure my child feels loved" highest for ill and healthy children. Other goals for healthy siblings focused on maintaining emotional connection and regularity within the family and for ill children focused on illness management. Mixed-methods analysis revealed that parents engaged in a process decision making and traded-off competing demands by considering needs which ultimately transformed the meaning of parenting. Discussion: Future research can further examine trade-offs and associated effects, how to support parent problem-solving and decision-making around trade-offs, and how to best offer social services alongside illness-directed care.

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April 2018 List