Decision-making for Parents of Children With Medical Complexities: Activity Theory Analysis

Area of Science:

• Pediatric healthcare
• Medical decision-making
• Complex care management

Background:

• Traditional shared decision-making (SDM) models are ill-suited for children with medical complexity (CMC).
• Parents of CMC face interconnected decisions with limited evidence, hindering effective SDM.
• Existing SDM approaches may not improve practices for CMC, contributing to low SDM rates.

Purpose of the Study:

• To address gaps in SDM for CMC by understanding parental decision-making processes.
• To explore the components of decision-making activity among parents of CMC.

Main Methods:

• Semistructured interviews with 12 parents of CMC or adult CMCs.
• Application of activity theory and qualitative framework analysis.
• In-depth exploration of the decision-making process in context.

Main Results:

• Parents of CMC develop decisions based on a mental illness model.
• Decision-making is informed by problem-solving, seeking understanding, obtaining treatments, and caregiving activities.
• Parental choices are built upon concrete understanding and evidence gathered through these activities.

Conclusions:

• Viewing decision-making as a combination of caregiving, problem-solving, and seeking activities can address aims and outcomes.
• Clinicians should integrate the child's situation and parental insights into decision-making discussions.
• Enhancing understanding between parents and providers moves beyond a narrow focus on parental values.