“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

Abstract

Although the contributions of reading ability and numeracy skills in successful navigation of health-related systems are understood, the skills that comprise interactive and critical health literacy are not fully explicit. Using a phenomenological approach and the conceptual frame of health literacy as an asset, we conducted focus group interviews with 35 caregivers of children who had significant medical needs. Caregiver quotes were coded and categorized and then compared to the Revised Blooms Taxonomy. The purpose of the analysis was to better understand the interactive and critical health literacy skills caregivers use when coordinating their children's care. The findings support a dynamic constructivist perspective of health literacy such that caregiver skill changed relative to the children's health conditions. In addition, a taxonomic code of cognitive and communicative skills emerged from the data. This taxonomy may be useful in developing instrumentation to measure interactive and critical health literacy as well as in identifying a potential foci of interventions aimed at improving interactive and critical health literacy.

Health literacy, or the ability of people to gather, interpret, and use information to make suitable health-related decisions, (Institute of Medicine, 2004) promotes participation, empowerment and control over daily life (Nutbeam, 2008). Health literacy is complex and achieving it may result from interactions between the person seeking health services and the health service environments themselves (Parker & Ratzan, 2010). Conceptually, health literacy may be viewed as both a risk and an asset (Nutbeam, 2008). Health literacy becomes a risk when an individual presents with poor literacy and numeracy skills. These limited skills impair the individual's ability to read, understand, and act upon health-related information (Nutbeam, 2008). In contrast, health literacy is an asset when people possess complex abilities enabling them to access, apply, and integrate information; this, fortunately, results in greater control over their health (Nutbeam). Akin to the view of health literacy as an asset are the constructs of interactive and critical health literacy (Nutbeam, 2000). Interactive and critical health literacy involves complex skills that individuals use to abstract, apply, and analyze health-related information, which leads to empowerment (Nutbeam, 2000). Viewing interactive and critical health literacy as assets fits well when understanding the sophisticated set of skills that caregivers of children with significant special health care needs utilize to coordinate their children's care.

Approximately 400,000 infant births each year result in a child with a special health care need (Russell et al., 2007) and greater than 50% of all Children with Special Health Care Needs (CSHCN) are from low-income households or from underrepresented racial and ethnic groups (van Dyck, Kogan, McPherson, Weissman, & Newacheck, 2004). According to the Maternal and Child Health Bureau (MCHB), CHSCN “have a chronic physical, developmental, behavioral or emotional condition and … require health and related services of a type and amount beyond that required by children generally.” (McPherson, Arango, Fox et al. 1998). CSHCN tend to access and utilize the health care system more frequently and may benefit from caregivers who have sufficient health literacy to navigate complicated systems of care.

Navigating systems of care successfully can result in optimal health for CSHCN. The medical home is recommended to assist families with navigating health care systems. Ideally, the medical home represents health care that is accessible, culturally competent, family-centered, and comprehensive. The care provided through the medical home should meet the priorities and needs of the family while coordinating all services that the child and family require (Starfield & Shi, 2004). Coordinated medical care is recommended for all children and this type of care is recognized as essential to achieve optimal health outcomes for CSHCN (Starfield & Shi).

Comprehensive coordinated care through a medical home is recognized as best practice. Unfortunately, the medical home may not be a standard of practice for CSHCN, and the responsibility of coordinating care may fall largely on the caregivers (parents, foster parents, relatives engaged in kinship care). As such, caregivers of children with significant medical needs may utilize complex cognitive and social skills to promote optimal health in their children and families. Little is known about the interactive and critical health literacy skills that caregivers of CSHCN have in coordinating their children's care. Using a phenomenological approach and the conceptual frame of health literacy as an asset, we conducted focus groups with caregivers of children who had significant medical needs. The purpose of this study was to better understand the cognitive and communicative skills caregivers use when coordinating their children's care.

Method

Design

A phenomenological approach was used to explore the experience of coordinating care for children with special health care needs. A phenomenological study is one in which the central meaning of a shared experience, from the perspective of the participants, is revealed (Patton, 1990; Creswell, 1998). In the present analysis, particular emphasis was placed on understanding how caregivers acquire, appraise, apply, and communicate information related to the effective care of their CSHCN. Focus group interviews were used to collect the data. Group interviews were selected to facilitate participant interaction, stimulate discussion of relevant topics, and allow multiple study participants to contribute their insights within a limited time period (Morgan, 1988).

Participants

Purposeful sampling was used to select potential participants for the study. Participants were recruited through informational flyers placed at a local children's hospital, the regional center for CSHCN, referrals from community social and medical service facilities, and through word of mouth. Snowball sampling also was used: potential participants were encouraged to refer other family or informal caregivers of CSHCN who they thought might be interested in the study. Eligibility for the study was determined by a telephone conversation, and participants were required to meet the following criteria: (a) to be primary caregivers for at least one child with special health care needs, (b) to be engaged in some aspect of care coordination, (c) to be able to understand and speak in English. There were no age-related inclusion criteria. Members of the research team explained the purpose of the study and time requirements to eligible caregivers; those who decided to proceed with the study chose a date and time that worked best for their schedules.

The University of Wisconsin-Milwaukee Institutional Review Board approved this research project. All participants participated in a consent process, and reviewed and signed consent documents. Participants received a $25.00 gift card as an incentive for participation. The gift card was provided to all participants who signed consent forms, even if they needed to leave the group interview early.

Procedure

Eligible participants were invited to participate in one group interview. They were able to choose from seven scheduled dates and times in order to best meet their scheduling needs. Each interview included 2 to 7 participants. Sessions took place at the local children's hospital, a familiar setting for most of the participants. Each interview lasted about 2 hours. The discussions were facilitated primarily by two members of the research team, with one member serving as a scribe (documenting the discussion on a large white board) for all seven group interviews and the other member guiding the discussion for all seven group interviews, using a pre-established interview guide. Two other members were present and occasionally asked for clarification or expansion of a discussion point.

Participants responded to a series of questions about their child (or children) and their perceptions of the process of coordinating care among all the systems with which they interacted. Probes were used to clarify some answers, or to more deeply explore a topic area. After each interview, the researchers met to discuss nonverbal communication, behavioral observations, procedural difficulties, and limitations in the interview guide. Following the first interview, the interview guide was modified to add more specific questions about each family and the children requiring care in order to help the facilitators understand each family more clearly. Discussions were audio-recorded and transcribed. The transcripts were then checked against the recordings for accuracy.

Instrumentation

The interview questions were developed through a review of the literature and consultation with an advisory panel of community leaders involved with CSHCN. The advisory panel included physicians, care coordinators, parent advocates, therapists, and parent educators. A preliminary version of the questions was presented to the advisory panel for review and feedback. The final version included eight primary questions (see Table 1).

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.

Data Analysis

A qualitative approach was used to analyze the participants’ discussion. Our analysis of the ways in which caregivers accessed, understood, and used health information emerged from an initial analysis of their experiences with care coordination. The data supported a more detailed examination of the underlying processes caregivers used to find and utilize information to support the health of their children.

Two members of the research team read and coded the transcripts using a method of constant comparison: data were compared with emerging codes and categories throughout the analysis (Glaser and Strauss, 1967). We used this method to systematically identify codes (key words or phrases reflecting the meaning of participant comments), to collapse them into larger categories (broader concepts encompassing related codes), and finally to identify the larger taxonomy (larger concepts representing the cognitive and communicative processes associated with the acquisition and use of health information).

Specifically, we read the transcripts and wrote key words and phrases in the margins to capture the meaning of a particular phrase or discussion point. We then met to review the codes and identify areas of disagreement. Analysis did not continue until we reached consensus through a review of our coding decisions, discussion, and ultimately, the recoding of quotes. At this stage, we also identified broader cognitive and communicative processes into which we could collapse the codes. We reanalyzed the interviews using these broader categories, collapsing the initial codes into these categories. A graduate student assistant organized the quotes and categories coded by each of the investigators into a spreadsheet, identifying areas of agreement and disagreement.

We again reviewed the categories and discussed both the areas of disagreement and the meaning behind the categories. At this stage, it became apparent that the categories related to cognitive processes strongly emulating the cognitive process outlined by Bloom in his educational taxonomy, which has since been revised (Pickard, 2007). Given our long-term objective to train caregivers in effectively accessing and navigating health-related services, this taxonomy seemed appropriate, and the decision was made to further collapse the coded passages into the revised taxonomy. As with the earlier analysis, this was performed separately, and then we reviewed each quote and associated process, reorganized quotes that were coded inappropriately, and identified any quotes that did not fit the taxonomy.

Strategies for Achieving Trustworthiness

Multiple verification procedures were used throughout the study to improve the trustworthiness of the data and results. Initially, the researchers reflected on personal and professional biases that could affect the interviews and the analysis. These biases and assumptions were bracketed, and we examined focus group questions and interpretations of the data for undue influence of these biases throughout the analytic process (Cresswell, 1998). This process is formally referred to as epoché. The research team also maintained an audit trail throughout the analysis.

Two forms of triangulation—triangulation of observers and analysts—were used to strengthen the analysis (Patton, 1990). In order to triangulate the observers, at least three investigators were present at all interviews, and they shared responsibility for observing the group and interjecting follow-up probes or pursuing lines of discussion if it appeared appropriate (Patton, 1990). In this way, the scribe and the objective observer both served as secondary interviewers, and listened for bias or leading questions during the discussions. Even though the interviewers shared some similar assumptions about the demands of caring for children with special health care needs, their perspectives varied because of differences in their occupational and clinical backgrounds. Each group interview was followed by a debriefing session among investigators to reflect on the discussion and to consider revising the interview guide.

Triangulation of analysts also was used (Patton, 1990). Each researcher coded and categorized the transcripts independently, came together to compare codes, reach consensus, and then separated in order to continue.

Results

Thirty-five caregivers of 31 children with special health care needs participated in the study. Most were mothers (77%). The ages of the children varied, from infants (6 months of age) to young adults (23). Table 2 contains a description of the caregivers and the conditions of their respective children. The majority of participants lived in close proximity to a large, urban area in the Midwest. Several participants whose children received services from the children's hospital at which the group interviews were held travelled greater distances, including three families from a neighboring state.

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

Caregivers used cognitive and communicative processes to gather, assess, and use health information to coordinate the best care possible for their children. They used cognitive processes, from simple to complex that closely aligned with the Revised Bloom's Taxonomy (Pickard, 2007). They also used communication strategies to facilitate communication between providers and systems, as well as to make their needs known and to advocate for their children.

Cognitive Processes

Participants described six cognitive processes, as defined in the Revised Bloom's Taxonomy (Pickard, 2007), which they used when seeking and using information related to the health of their children. Although many spoke of medical information, they did not refer only to the importance of health information. Other information, critical to the well-being of the children, also was discussed (for example, legal, educational, and social/recreational). Table 3 depicts the cognitive processes that caregivers described as they spoke of their care coordination experiences.

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

Remember

Caregivers infrequently referred to tasks that required listing or recalling information. They more often referred to the systems they had created to help them monitor and track the information they needed to care for their children. These systems are discussed in “create.” However, several clear references were made to the importance of remembering information. One mother reported, “I save everything.” Another advised caregivers who were new to the process of caring for their child, “Write everything down. Everything.”

One participant described how difficult it is to keep track of information:

“Sometimes I'd come home and I'd just forget everything. My husband would say, what happened, and I'd just forget. I'd get a phone call a few days later, you didn't schedule your CT scan. You just walk out of these meetings burnt. You forget to do what you were supposed to do.”

Understand

Caregivers saw understanding medical information, terminology, and procedures as a necessity for providing care for the child. This was important to their understanding of the information provided to them. They also needed to be able to use medical language accurately to communicate with providers.

“If you can't speak the same language as the doctors, if you don't know the medical terms, then you can't really participate in their care as much as you possibly should be. So yeah, you need some medical information.”

To improve their understanding of medical terminology, procedures, medications, and services, caregivers engaged in an extensive process of searching for and locating information. This was absolutely necessary because, as one parent put it, “You research to find out what you can do to help your child, no one hands you a pamphlet that says, ok, this is what you do next.” This process was time consuming and continuous as caregivers attempted to find information about diagnoses, treatments, and resources. Some caregivers, such as this parent, talked about searching for medical information in order to understand their children's conditions:

“As a parent, I'm sure all of you have had to research what the diagnosis is and stuff like that. For my daughter, I've also had to research how I can help her. And you're doing this all on your own and thank goodness there's the internet now. Otherwise, my god, you're spending countless hours looking for something that's going to help your child.”

Others raised the important point that medical information is not the only information they are trying to locate and understand. Many were looking for legal information (e.g., guardianship, disability benefits, financial trusts), educational resources (schools, child care, respite), legislative information (bills at the State and Federal level, local representatives), and community resources (transportation, financial). This parent spent time looking for recreational and leisure opportunities for her child:

“Community resources, trying to find other places that are willing to take your child for classes and things like that, like parks and rec … ”

She had accessed multiple sources of information, including websites, support groups, electronic mailing lists, providers, and community trainings. Most used a variety of sources to gather information, and they discussed constantly networking to find information:

“The more you network. You have to be out there and you have to say I have a special needs child in whatever setting you might be in because somebody might know somebody who knows somebody and that's the way it starts.”

Many searched the internet for information: “I'm on the computer constantly looking things up.” Many also spoke with other parents: “I have found sometimes my best source of information is other parents.” Other parents provided insights into community resources, medical and other providers, information on things such as medical procedures, community resources, and diagnosis-specific tips.

“You go to the support group and you talk to the other parents and say, what's going on with your kid, who's caring for your kid, and what are they doing. Oh, you're having an fMRI? I haven't had an fMRI. So things like that.”

Several reported that education and training sessions that were helpful: “I've learned a lot from going to workshops.”

“We went to a (community center) for five nights. One night for five months in a row, so like, every six weeks we'd go and they'd have speakers and it was just such an empowering program and we learned so much about educational advocacy, legislative advocacy, just all sorts of across the board issues.”

Caregivers also were required to explain their children's diagnoses, medical care, and basic needs to providers, family, and educators. Sometimes a condition was rare enough that providers were unfamiliar with that child's diagnosis.

“Being the educator as to what (a trisomy) is because a lot of these professionals are like ‘What? We've never heard of that. We know what a trisomy is but we've never worked with a child with this specific trisomy.'”

Other times, the care provider lacked a medical background, and required important, detailed information:

“But if you have, if your care provider has that medical background, I think it would be easy. If they don't have that medical background then it's more difficult. Because you have to thoroughly explain. You can't just give a brief overview. You've got to explain in depth.”

Caregivers also explained signs, symptoms, and behaviors to providers in order to improve care. For example, this mother states, “Being able to relay information to teachers and therapists, this is what she does when she's not happy.”

Apply

Caregivers applied the information they had gathered in a number of ways. Most predominantly, they engaged in problem solving, scheduling, and training others in the care of their children. Problem solving took a number of forms. Many caregivers reported having to solve insurance issues. For example, some children had multiple diagnoses. Caregivers made sure that the diagnosis placed on claim forms was one that was reimbursable, because the insurance companies reimbursed services for only certain diagnoses, and denied others automatically.

“His orthotics were denied because the diagnosis that the doctor put down is not something they cover the orthotics for. And so we just changed the diagnosis the next time he needed the orthotics … they put down extreme flat foot, the technical term for flat foot, which they won't pay for. But, if you put down CP, they will.”

Other caregivers had to solve issues pertaining to medical care, for example, the best way to tube feed a child or how to fix medical equipment.

“They come in and train you on the pump for ten minutes and then they're gone.”

Caregivers also had to use their knowledge to monitor care, and had to use the information they had about their child's care plan to be sure all aspects of care were being addressed.

“ … individual issues where things need to be watched, whether it's her anemia or whatever, blood work needs to be done on a regular basis. That slips through the cracks all the time, even when you have a care coordinator to help you do that. It slips through the cracks. So once again, it's always back to us as the parents to keep track of all that stuff.”

They engaged in complex care tasks, and trained others to perform the tasks:

“We found most of the home health care nurses … not accustomed to working with small children because most home health nursing is for senior citizens. So one time we had someone put an NG tube down, she'd never done it before on a child. So someone was trying to show her how and I'm like, I have more experience than she does, I'll just do it myself. I don't want someone trying to do it who has never done it before.

A lot of people probably have nurses at home that have done PIC line stuff and IV antibiotics and NG tubes. You have to learn how to do some of that stuff sometimes.

You're basically training them (providers) when they come in your home.”

Scheduling and coordinating appointments took tremendous time and effort. Caregivers made multiple appointments each week, coordinated nursing and therapy home visits, school, and site-based rehabilitation and medical care, and attempted to integrate these events into any other family requirements (e.g., other children or work):

“I'm constantly on the phone with people … different doctors trying to coordinate … I'm trying to constantly trying to coordinate all the doctors in one visit so I don't have to constantly keep coming to Children's 3–4 times a week.”

Analyze

Caregivers appraised, compared, and contrasted circumstances to question the appropriateness of their children's medical care, medications, and community placements:

“She is CP, she's got all the problems specifically with her, but then she'd come down here with something else so they'd put her on a different med. They'd never take her off of it, so in a year's time, she'd be on 8 meds when she only needed to be on four. You have to watch that and make sure … why is she on this? Does she really need to be on it?”

Another caregiver stated,

“… because you have to be extremely careful with the doctors because my child cannot take over-the-counter drugs, so you have to know that for colds or anything because it interacts with the other medications he's on so you have to know that and educate yourself on that.”

Caregivers also described comparing and contrasting programs so that their children's health-related needs could be met in community settings.

“And finding programs that generate to your child. They have a lot of programs and my son doesn't talk, he doesn't walk, he's in a wheelchair and finding programs that are going to deal with him and not put him in the corner and deal with everybody else, that's a lot to do too. We're trying to find programs that fit your child.”

Evaluate

Caregivers engaged in a process of evaluation to appraise information, integrate it with their knowledge, and decide what course of action was best for their children. They carefully considered and evaluated information they received from health care providers, measured it against their understanding of the advice of others and their children's overall treatment plans, and used these syntheses of information to make health-related decisions. Sometimes this involved conflicting medical opinions, as this caregivers describes:

“And if you talk to two different psychiatrists and two different psychologists, you will get 4 different answers and they all believe their answer is right so you somehow have to muddle your way through and you have to listen to what you know as your child and what the professionals are saying.”

Other times, it was necessary to make decisions about medical interventions that might be contrary to the advice of medical professionals. This caregiver recognized the rationale for a surgical intervention, but opted not to pursue it out of concern for the child.

“Because my child, he doesn't walk so they wanted to break his legs or his hip and reset them and I thought that was just too much. Because he has seizures, he has a shunt in his head so they've been in his head, they did all these tests and I thought, it's too much, it's just too much. So, as a parent, you have to put limitations on things on how far you're going to have them go. I don't know if he could've walked if they did it, but me as a parent I just did not want him to have to go through that again, another surgery, another something.”

Create

Caregivers created systems to assist them with navigation through the services, providers, and agencies with whom they interacted. They developed materials ranging from notebooks, binders, photographs, and websites. These materials appeared to serve multiple purposes including facilitation of communication, a way of remembering, and a means of networking.

“Not only journals, but photographs because we've found so often … these are rare diseases … we'll call them up and say this is what's going on and they'll say, yeah right. So we finally started taking pictures. Pictures of this monitor saying there is no pulse and no respiration and here's this blue kid. We're not kidding.”

Another caregiver discussed the documents they created to describe how to replace the G-tube if it “pops out.” She stated,

“My son has a g-tube so I have something posted on the refrigerator in case his tube pops out. I have a step-by-step 3-page thing to tell you what to follow. It had come out on me before so you definitely have to cover all angles.”

Another caregiver said,

“I have a web page … and I've been able to connect with some other parents with the same disability.”

Communicative Processes

Communication skills were extremely important. In order to effectively care for their children, caregivers had to facilitate and sometimes mediate communication between providers, assert themselves in order to advocate for their children, and, occasionally, engage in more aggressive communication to meet the needs of their children. Table 4 depicts the communicative process that the caregivers described when coordinating their children's care.

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

Facilitate and Mediate Communication

Caregivers had the responsibility to deliver information between providers, or to encourage communication between them. They reported poor information transfer between providers, as this caregiver describes:

“You have to tell them what tests were done, whether it be a swallow study or a saliva study or whatever, they don't get the information. So pretty much it's coordination between us, school, and doctors, and making appointments.”

Caregivers also reported that members of the rehabilitation and medical teams have little information about what other team members are recommending or implementing, and that it is the parent's responsibility to communicate this information:

“I think it is also up to the parents to try and stay on top of everything because Dr. A might know Dr. B, but they have no idea what Dr. A has told you. So, you got to stay on top of everything.”

This mother stated,

“I am the one carrying information back and forth—none of them know what the other one is doing and I know I am telling them, ‘No, doctor so and so said this and he told us to do that.'”

Caregivers also mediate communication. They attempt to bring teams together to reach consensus:

“I was trying to juggle all of the doctors and trying to communicate and make sure that they were all on the same page.”

They also work to facilitate communication between team members through evaluating their own communication, and facilitating communication between team members:

“You have to be diplomatic and you have to realize that everyone on the team, whatever that team is, their job is not to make your life miserable. They're there operating within their own systems, within their own strengths and weaknesses and you get much better results if you yourself admit your own weaknesses and shortcomings and then are willing to try to work together to accomplish little things.”

This caregiver describes ensuring that team members all have access to the same written information so that all can agree on a course of action:

“For me, it's working with every level of the health care providers. From the top doctors on down to the … whoever comes in the middle of the night just to take over. And making sure all the various departments and various levels of the doctors and nurses all know what your child is. All have access to his file, his information, the latest information, and they're all in agreement with where are we going with the progression of your child's care.”

Assertive Communication

Assertive communication was a dominant theme throughout the groups. Caregivers stated that they needed to ask questions, request information, and disagree with providers when necessary: “You need to persevere and keep asking questions.” They advised new caregivers to stand their ground, “Be bold. Don't be afraid of them.” Providers may not offer all the information that a caregiver wants or needs; assertive communication can help them access it. Caregivers serve as the liaison between multiple providers, so they need up-to-date medications, medical plans, and test results. It is not always apparent to the providers that this is necessary, as this caregiver reported, “Asking for the results of every test. That's a big thing. They don't even think to do that.”

These skills are important when the caregiver wants to suggests a change, for example, to the plan of care, or if they wish to change providers. This caregiver encouraged others as follows:

“You've got to … if it's not working for your child, you've got to speak up, this is not working and we're not going to use it anymore, I want to try something else.”

Caregivers must feel comfortable requesting a change if the relationship between caregiver and provider or child and provider is not optimal. One woman described her experience with a therapist, who her child did not like.

“When Birth-to-3 was still coming out to the home and my child was just not taking to this speech therapist and he would cry bloody murder. And she would come out every time, she came out a total of four times and she said well, maybe he's just cranky. And I said, well, he's not cranky before each time you come, maybe it's just you. So I had to say I'm sorry, I don't think this is going to work. It was difficult.”

Finally, assertive communication is critical for caregivers who serve as the child's primary advocate. The study participants identified advocacy as an important component of the child's care, “You have to advocate,” and saw it as a responsibility. “Realize that you are an advocate for your child.”

Aggressive Communication

Occasionally, study participants felt it was important to be aggressive. Below, two caregivers describe situations in which they felt aggressive communication was appropriate.

“I scare the hell out of the interns and I love it. And I will not stop. I am there for rounds and if the interns do one thing wrong or say one thing wrong about my child, I am all up in their butt because you know what? They should have their crap together. They should look at his chart and they should know what the hell they're talking about.”

“Well, when did I sign forms for my daughter, who has a cognitive level of 8–10 months to take up a woodshop class? How many teachers are in that class? She said, just one. I hit the ceiling, I mean, you don't set my child up to hurt herself up like that. She's a grabber, she has long arms, she reaches. She has octopus legs and hands. There is no way. You don't do that. I went to the school and I bit everybody!”

Discussion

Caregivers of CSHCN develop and rely upon a complex set of cognitive and communicative skills to promote optimal health of their children and families. For the caregivers who participated in the focus group interviews, achieving optimal health transcended multiple health-related systems of care including medical, educational, family, recreational, and spiritual. Caregivers engaged in activities that required profound interactive and sometimes critical health literacy skills to promote participation, management, and decision-making. Given the results of analysis in this study, utilizing the Revised Blooms Taxonomy (RBT; Pickard, 2007) to characterize the experience of caregiver interactive and critical health literacy seemed appropriate.

Taxonomies are used to identify, name and classify things within a system (Merriam-Webster Dictionary, 2011). The RBT includes two dimensions (cognitive process and knowledge), which are not hierarchical (Pickard). The RBT espouses a constructivist view of learning whereby learners use meaning to process new information. That is, learners make sense of new information based upon former knowledge. They utilize cognitive processes that allow the learner to take action on their past knowledge (Pickard).

The constructivist view of learning espoused in the RBT is characteristic of the processes that caregivers engaged in when they navigated multiple health-related systems of care. The constructivist view of learning supports a dynamic view of health literacy (Berkman, Davis & McCormack, 2010). That is, the caregivers’ health literacy skills changed with their children's health-related experiences. Caregivers learned through trial and error, networking, and through the stories of other caregivers. It became clear that the health literacy skills utilized by the caregivers were not static and that engagement in these skills varied based upon each caregiver's priorities, their child's health condition, and the needs of their family. This suggests that measurement of and interventions for improving interactive and critical health literacy skills need to include the relevance or importance of the skill to the caregiver as well the caregiver's perceived ability or efficacy within a particular skill.

Additionally, there were other factors that appeared to contribute to the caregivers’ ability to navigate health-related systems of care. First, although the caregivers reported feeling overwhelmed, they also viewed their children as a source of inspiration and purpose. Family-centered care provided through medical homes is one method that may improve family functioning through stress reduction and social support (Homer et al., 2008). Health-related service professionals that embed care in a family-centered philosophy recognize that CSHCN depend upon caregivers for support, nurturing, and survival (Stephans & Tauber, 2005). Family-centered care models espouse that caregivers are experts relative to their children's health, habits, and routines; however, caregivers may not be experts in navigating complex health care systems. Health-related professionals that assist caregivers of CSHCN with care coordination activities should respect the caregiver's personal knowledge about their child with a SHCN while equipping them with the tools necessary to manage fragmented and seemingly complex systems of care that extend beyond traditional medical contexts into the community.

Second, caregivers found that searching for information was very time consuming and they utilized the Internet and other caregivers as sources of information. Recently, evaluation of Internet-based patient portals to improve caregiver access to health-related information demonstrated some success with families who had private health insurance (Byczkowski, Munafo, & Britto, 2011). Unfortunately, families from diverse ethnic and racial backgrounds and families who were insured through Medicaid obtained access to a portal account less frequently (Byczkowski, Munafo, & Britto). Whereas technology holds promise with regard to decreasing the amount of time caregivers spend searching for information, a better understanding of how technology can support caregivers is essential. In addition, barriers to technology access and use for individuals from underrepresented groups must be explored in order to increase the effectiveness of these types of interventions.

Third, caregivers expressed the need to strongly advocate for their children, and advocacy ranged from assertiveness to aggressiveness. Poor caregiver-provider communication may result in greater health disparities (Ashton et al., 2003). Sociocultural factors including race, ethnicity, gender, age, profession, education, language, and relationship with the provider influence health-related communication behaviors (Ashton et al.). An intervention designed to improve the assertiveness skills of a caregiver should take into account sociocultural factors that could influence effective communication with a health care professional.

Finally, although challenges in caregiver and professional communication were identified, communication among health care professionals emerged as a significant barrier in effectively managing care. Unfortunately this phenomenon is not new. In 2004, communication difficulties among pediatricians and specialized health care providers were identified in the literature (Stille & Antonelli, 2004). Reimbursement methods that include payment for care coordination across service delivery contexts and innovative practice structures may effectively reduce the communication barriers that exist among health care providers (Stille & Antonelli). Such changes in health care policy and practice constitute a significant paradigm shift. Given that poor communication among health care providers continues to exist, it appears as though implementation of improving continuity of care is progressing slowly.

Limitations

As a qualitative appraisal of caregiver coordination related to their respective child's health care condition, the data herein provide the basis of a taxonomic structure of interactive and health literacy skills. Although the quotes represent authentic caregiver experiences, the sample of participants was relatively homogeneous and was limited in the inclusion of caregivers from underrepresented ethnic, racial, and socioeconomic groups. In addition, the caregivers were primarily recruited because they had children with complex special health care needs, and data regarding their educational levels, marital status, and race/ethnicity were not explicitly documented. Although this is a limitation of the study, the data do provide a foundation for future research.

Future Research

The proposed taxonomy of interactive and critical health literacy provides a foundation for instrumentation and intervention development. Future research is needed to determine if the cognitive and communicative skills presented herein are seen in diverse groups of caregivers of CSHCN as well as caregivers of adults with disabilities.

Acknowledgments

This research was supported by a grant from the Graduate School at the University of Wisconsin-Milwaukee. We thank the participating families and agencies.