“I Cried Because I Didn't Know if I Could Take Care of Him”: Toward a Taxonomy of Interactive and Critical Health Literacy as Portrayed by Caregivers of Children with Special Health Care Needs

Figures & data

Table 1. Focus group interview guide

• Tell us about your child's special care needs.

• What does the term ‘care coordination’ mean to you?

• Tell us about what you do to manage and coordinate care for your child.

• What skills and knowledge do caregivers need to coordinate or manage their child's care?

• What services or systems do you manage or coordinate for your child?

• What makes care coordination or management easy? What makes care coordination difficult?

• Tell us about a time when you were in crisis. How did you manage? What was that experience like?

• Tell us about a time when your proactive care coordination actions made a difference.

Table 2. Descriptive characteristics of the caregivers and their respective children

Characteristic	Numeric or narrative description
Relationship to Child (n = 35)
Mother/Father	30
Aunt/Uncle	1
Foster parent	3
Adoptive parent	1
Child's Age (n = 26)	Mean = 10.3 Range = 6 months–23 years
Child's Sex (n = 31)	Male = 18 Female = 13
Child's Diagnosis (n = 31)	Genetic, Congenital, Behavioral, Trauma, Unknown

Table 3. Cognitive process as portrayed by caregivers

Process	Definition	Sample associated verbs
Remember	To retain health-related information	list; recall; reproduce,
Understand	To learn or know about health-related information	discuss; explain; locate; predict
Apply	To put knowledge about health information to practical use	choose; demonstrate; interpret; schedule; solve
Analyze	To examine or separate into parts to determine function and interrelationships	compare/contrast; prioritize; question; appraise; criticize
Evaluate	To determine the quality or value of information to make decisions related to their child's health	appraise; argue; decide; defend/justify
Create	To make or design something that increases the caregivers ability to navigate the system	assemble; construct; create; develop; organize; plan

Table 4. Communicative processes utilized by caregivers

Process	Definition	Sample associated verbs
Facilitate and mediate	To conciliate between health-related professionals so that their child's care can be made easier	encourage, connect, build consensus
Assert	To maintain or defend their child's rights in a nonaggressive manner	ask, request, respectfully disagree, persevere
Aggress	To boldly pursue health-related care in a forceful way that does not necessarily regard or respect the health professional	scare, intimidate, disrespectfully disagree