Although medical advancements have improved the mortality of CHD, morbidity still exists, impacting patient quality of life. Returning to baseline in the early surgical recovery phase is an area of potential improvement. This preliminary project aims to qualitatively understand CHD family perspectives concerning the immediate postoperative recovery phase. The participating patients enrolled in the Enhanced Recovery After Surgery program, a postsurgical symptom management tool utilised in adult centres and broadening into pediatrics. Twenty-three of 27 contacted families answered open-ended questions 1 to 3 months postoperatively regarding difficulties experienced during their first week home. They reviewed a list of symptoms including: difficulties with pain, nausea, activity, sleep, appetite, bowel or urinary systems, and taking medications. A qualitative thematic analysis was performed with the open responses, as well as a quantitative assessment of the types of issues that made recovery challenging. Participants struggled most with sleep (78%), returning to activity (70%), and pain (57%). Open-ended responses suggested that an inability to do daily activities, sleep (frequently impacted by pain), and inadequate resources most negatively impacted recovery. Given these findings, investigating postoperative sleep regimens and effective pain plan components may prove useful, in addition to the further development of early mobility programs. The positive and negative experiences highlighting the desire for readily available medical guidance enforce the need for open communication between families and team members, potentially aided by digital tools. Ultimately, further data could support the development of a standardised protocol to better the immediate postoperative quality of life for CHD families.
