TABLE 2.

Themes, Their Descriptions, and Their Subthemes on How Families of Children With Medical Complexity Identify and Communicate About Clinical Deterioration in Hospital

Theme	Description of Theme	Subthemes
“He writes his own book”: textbooks are of little help	Families have expert knowledge about their child’s unique responses to their chronic condition and care.	The child’s baseline is often misunderstood.
		The family compares illness to previous illnesses and baseline, which team usually does not know.
		Parent intuition is difficult to convey.
Informal, learned pathways to navigate a complex and confusing system and communicate with clinicians	Families develop knowledge, skills, tools, and resources over time with which to convey their expert knowledge with clinicians.	Understanding how to listen to and negotiate with trainees
		Tools and strategies for families and clinicians to see the same thing at the same time with the right clinician
		Importance of an explicit, clear, and shared plan of care
		Nurse as trusted ally and advocate
		Value of shared experience with clinicians in child’s illness and in building trust and respect
		Families create organizational tools that are little informed by or informative to hospital-based tools.
Importance of advocacy and persistence	Families learn to advocate for the care they believe their child needs.	Clinical team recognizes and respects the family as an expert with their child.
		Family has confidence in role as advocate and ability to advocate, which can take time to develop.
		Families learn workarounds to escalate concerns as advocates in the hospital.
		Coordination takes work and advocacy by family; care conferences are helpful but need to be requested.
“We’re not your typical parents”: parents and doctors learn roles as part of hospital care team	The family strives to be part of the care team, but the clinical team is often uncertain of and/or uncomfortable with how this process should work.	Lack of role clarity, and occasionally tension, for family versus care team tasks
		Expertise of family and care team can seem competing and/or adversarial.
		Family is part of the monitoring system in the hospital, including of objective data.
		Family is the central story-keeper and storyteller; it takes effort to tell right parts of the story to right parts of the team.
		Medical team continuity (across days and weeks) poses challenges to goals, trust, and understanding.
Medical culture and practice do not consistently support partnership	There is a perception that advocacy or conflict with clinical team could result in being labeled “difficult parents” and that their input is not always sought or valued, and this affects bidirectional communication.	“They wrote it in my chart by now.”
		Doctors often lack emotional intelligence and/or listening skills.
		Hospital processes do little to integrate home care routines and/or medication schedules.
		Repetition of questions and care tasks in hospital can be frustrating.
		Game of telephone: information gets lost, and loops do not get closed
Running on empty; stress, fear, lack of sleep, and loss of control in the hospital	Intrinsic stressors of hospitalization affect family experience and/or coping.	It is difficult to think and make decisions when low on sleep, food, and/or basic needs.
		The hospital is a lonely, scary, stressful, and disorienting place.
		Hospitalization means some loss of control and/or increased vulnerability to others’ whims and schedules.