This collaborative research will utilize the Experience Group and Contextual Interview, two qualitative research methodologies, in order to understand and improve patients' and families with single-ventricle congenital heart disease (CHD) journey in care. There will be six main groups participating in the study: 1. Patients age 6 and older with a diagnosis of single-ventricle congenital heart disease; 2. Siblings (age 6 and older) of patients with single-ventricle CHD; 3. Parents or legal guardians of patients with single-ventricle CHD (regardless of patient age); 4. Pregnant parents who have a received a prenatal diagnosis of single-ventricle CHD; 5. Parents of deceased patients with single-ventricle CHD; 6. Adult partners of adult single-ventricle CHD patients.
Participants will take part in an Experience Group. The Experience Group methodology is a form of qualitative research that brings together a group of 4-8 people who share similar medical circumstances for a conversation. This methodology has been successfully used by researchers from the Value Institute for Health and Care to gain insights in different patient populations. The groups will take place at Dell Medical School, The Dell Pediatric Research Institute (across the street from Dell Children's Medical Center), or other convenient public location as needed to allow for the least amount of travel for participants. Each group lasts 60-90 minutes and encourages participants to discuss their conditions and experiences outside the hospital/clinic, specifically. Focusing on the lifestyle aspect of the patient experience enables insight into both the successes and the challenges faced outside the health care system and in unobservable situations. Conversation is encouraged by the facilitator, who offers topics such as "what makes a good/bad day?", "what are your aspirations, what are your fears?", and "what are some of the obstacles and burdens you face on a regular basis?" Using a research approach that employs semi-structured, open-ended questions directed towards the group as a whole, the investigators hope to learn about the unarticulated, unmet needs of these patients, both physical and emotional, and ranging both within and outside of the clinic. Participants will not be asked to take part in more than one Experience Group session. Due to the current COVID-19 pandemic, Experience Group sessions will be held virtually via Zoom.
Participants can elect to participate in a follow-up Contextual Interview following the Experience Groups. If the participants provide consent, they may be contacted for an interview. Not every patient that consents for participation will be asked to participate. Contextual Interviews will take place in participant's homes, or any other place of their choosing where they feel comfortable. Contextual Interviews will be performed by up to three personnel from the Design Institute for Health. The Design Institute has used this methodology extensively to identify needs and insights from patients to redesign care. Upon completion and approval of the optional model release part of the informed consent, audio recordings and photos may be taken. The Contextual Interviews do not follow a rigid question / answer scheme. Instead, their tone is conversational. Interview prompts will center around challenges the patients and families faced in their journey with CHD. Example questions may include, "When did you first receive the diagnosis?", "How do you feel about the care you were receiving?", "What, if anything, did the care team do to make you feel cared for?", "How did you feel about the location/environment?", and "What, if anything could have been different, improved or better for you?" Participants will not be asked to take part in more than one Contextual Interview session. Due to the current COVID-19 pandemic, Contextual Interviews will take place virtually via Zoom.
Finally, some participants will have the opportunity to take part in virtual workshops to discuss the challenges uncovered in the Experience Groups and Contextual Interviews and ideate potential solutions to such challenges. Workshops are ideation meetings lasting from a few hours to a full day and would include stakeholders from all three collaborators and patient and family representatives, if appropriate. Participants in workshops will be asked to comment on research insights, participate in ideation sessions (brainstorms), sketch and write up ideas and evaluate different service design concepts.
