Table 2.

Parent and clinician decision support needs

Parent/Clinician Need	Demonstrative Quote	Decision Aid Component
Parents felt unprepared to discuss hydroxyurea initiation.	“That’s what’s scary when you don’t have the appropriate information, you just have to make a decision . . . don’t have the time or opportunity to get the information.” “Parents may not really understand everything . . . cause sometimes they may not know the correct answers . . . the correct questions to ask so they’re kind of left in the dark.” “[To overcome the barrier of lack of knowledge] it would help to supply the information ahead of time instead of just suggesting it at the clinic like during their treatment...So that they kind of have a heads up of what’s going on next.”	Pre-visit brochure
Parents had difficulty accessing accurate information about SCA and hydroxyurea.	“In the beginning I felt a little scared, it was as if I didn’t have enough information to really understand um the effects of the medicine what to expect from the medicine.” “All of our research on the drug itself, its relationship was to its use in the treatment of cancer and we didn’t really understand the correlation between that and how it’s being applied here.” “The only thing I wish was out there and it’s just not readily available right now would be is the long term information because right now, we’re just stepping out on faith.”	All decision aid materials
Parents wanted to hear the experiences of other parents prior to making a decision.	“We talked with the doctor and then one of the biggest influences, I think was just talking to another parent.” “Yeah, cause sometimes people have to look at information and see what other parents’ opinion and decision making is and how they deal and dealt with their child and situation.” “That would’ve been great to have people in the room, people who are on hydroxyurea and people who are starting you know, ... to know the process and how it works.”	Video narratives
Parents desired a discussion that incorporated their values and preferences.	“I know they’re doc- they’re the doctor, but ... that’s my child. . . . I don’t just take it just because that’s what they say. . . maybe personally for you, quality of life was important, so maybe that would affect [your decision}” “If there was another visit then they would be like ‘have you thought any’ you know ‘what do you think?’ it wasn’t ‘we want him to do this’ it was ‘well, what do you think?’” “Just sitting down to ask him a lot of questions. Just asking the doctor any questions to assure you that this doesn’t [seem like] the wrong decision.”	Organization of the decision aids by issues important to parents (range of topics available on the issue card to discuss with clinicians).
Parents needed to have information to share with other family members who would help make the decision but may not be present at the visit.	“The family has the decision, but if you go home like me; me and my husband make the decision.” “I looked [HU] up and I talked to my family about it, like all my family. And so we all basically just came up with a decision together...” “[I] decided with my mom. My mom is always there, . . . even if she is nine hours away from you, she still wanna know. . . she wants to be in that decision.”	After-visit booklet
Parents may not make the decision after the first discussion with the clinician.	“[I need] time, don’t rush me when making a decision like that.” “I kinda take my time getting information. I have a really great support system of both family members . . . and I ask a lot of questions and just deal with it until I’m comfortable with it, then I can make a decision because ultimately if the responsibility’s gonna rest on my shoulders, then I need to be comfortable with it.” “[After the] recommendation from the doctor, then me and my husband take time to talk about it and then we’ll talk about it with [our child with sickle cell anemia]; sometimes, I try and get opinions from others, you know adults with sickle cell or some parents of children with sickle cell that possibly have the same experience or in the same situation and then we’ll come back together and try to make the best informed decision that works for us.”	After-visit booklet
Clinicians need more time to have a comprehensive discussion.	“have enough of an appointment time to be able to explain clearly enough the how’s and why’s without having to rush to the next patient.” “I wish I had more time and literature specifically tailored for patient with sickle cell disease.” “The lack of time and resources to show patients.” “Lack of time during appointments.”	Structured process – prioritize issues most important to parents, provider talking points
Clinicians desire sickle cell specific resources.	“A better sickle cell focused hand out” “Visual aids explaining effects of HU” “Simple handout discussing data about efficacy and side effects in very simple terms, history of its use. importance and schedule for lab monitoring”	After-visit booklet, resources and video narratives
Clinicians concerned that parents do not have access to accurate information.	“New treatment, chemotherapy drug, hesitant when introduced because no technology to search in front of them” “It is very difficult when families without any knowledge feel that the medication is “experimental” . . . Also, when families want a 100% guarantee that this medication will cure their child (i.e. unrealistic expectations).” “Wrong information that the patient [parent] has received about hydroxyurea in the past.” “Conflicting and/or anecdotal information” “misinformation from other patients/families (“my child was fine until she took HU, then she got so much worse, don’t put your child on it”)”	All decision aids, resources and the video narratives
Clinicians feel some parents are not ready for the discussion.	“Lack of understanding . . . about seriousness of untreated SCD; unwillingness to make a decision that might result in unintended side effects; desire for a magical cure without any risks” “If I feel the patient [parent] does not truly understand the pros/cons of their choice . . . If patient [parent] cannot articulate why they have made a particular choice or are inconsistent in their preference, . . . I feel patient [parent] is making choice based on biased or inaccurate presentation of information” “They don’t see the need, a lot of info going on in visit (HU message may be lost)” ‘Fear of the unknown; difficulty in understanding the risks of their current disease state vs the possible risks of HU”	Organization of the decision aids by issues important to parents (range of topics available on the issue card to discuss with parents).
Clinicians want parents to be active partners in decision making.	“It is easy to support decision making when they ask insightful questions and seem to understand the information I am giving them.” “Family willing to be a partner in decision making and willing to weigh risks and benefits as objectively as possible.” ‘Parents thinking it through, opportunity to provide additional information.” “When they ask questions and wait for answers; when the meeting goes at least an hour and everyone is talking and listening---being open and honest.”	Issue card
Clinicians feel talking with others parents would help with decision making.	“Parent testimonials; educational materials in easy to grasp format.” “It helps if the patients/families talk to other patient/families that are on hydroxyurea and can share their experiences. This gives them a perspective that the medical provider cannot give them.” “More patient-oriented materials, audiovisuals.” “Parent testimonials would be a huge plus.” “I would like to have more first-person testimonials about HU that are accurate. We need them from all age groups, boys and girls and parents.”	Video narratives