JMIR Publications

ABSTRACT

Background:

Shared Decision-Making (SDM), a collaborative approach to reach decisional agreement, has been advocated as an ideal model of decision-making in the medical encounter. Frameworks for SDM have been developed largely from the clinical context of a competent adult patient facing a single medical problem, presented with multiple treatment options informed by a solid base of evidence. It is difficult to apply this model to the paediatric setting, and Children with Medical Complexity (CMC) specifically, since parents of CMC often face a myriad of interconnected decisions with minimal evidence available on the multiple complex and co-existing chronic conditions. Thus, solutions that are developed based on the traditional model of SDM may not improve SDM practices for CMCs and may be a factor contributing to the low rate of SDM practiced with CMCs.

Objective:

The goal of our study is to address the gaps in the current approach to SDM for CMC by better understanding the decision-making activity amongst parents of CMCs and exploring what comprises their decision-making activity.

Methods:

12 participants were interviewed using semi-structured interviews based on Activity Theory. Participants identified as either a parent of a CMC or a CMC over the age of 18. Qualitative Framework Analysis and an Activity Theory framework were employed to understand the complexity of the decision-making process in context.

Results:

Parents of CMCs in our study made decisions based on a mental model of their child’s illness, informed by the activities of problem-solving, seeking understanding, obtaining tests and treatment, and caregiving. These findings suggest that the basis for parental choice and values, which are used in the decision-making activity, was developed by including activities that build concrete understanding and capture evidence to support their decisions.

Conclusions:

Our interviews with parents of CMCs suggest that we can address both the aims of each individual activity and the related outcomes (both intended and unintended) by viewing the decision-making activity as a combination of caregiving, problem-solving and seeking activities. Clinicians could consider using this lens to focus decision-making discussions on integrating the child’s unique situation, the insights parents gain through their decision-making activity and their clinical knowledge to enhance the understanding between parents and health care providers, beyond the narrow concept of parental values.