Table 3.

Qualitative health system themes with representative quotes.

Theme	Subtheme	Representative quotes
Cost of care	Insurance and payments	The patient was fortunate to be covered by insurance through his mom, who is a nurse, until he was able to work himself and be covered under his employment.
		He notes that his insurance, with supplemental insurance from the government, has covered all of his procedures and treatments well.
		Maintaining health coverage due to all her medical issues was a concern. The variation in insurance between employers can make things difficult.
		The family had many problems with insurance. She complains that she wants to be healthy and treat herself properly, but must pay a copay for every visit and every surgical procedure and it has become a major financial burden.
		He is insured by Medicaid and has a lot of difficulty “proving that he has a disease,” and so has struggled financially. The other patient with OI has had a very different experience. Her parents both have very good insurance plans and have been able to cover all of her surgeries and treatments easily.
		He lives in a trailer home with his mom. His mattress is worn through, but he can’t get another one until the end of the year. When his wheelchair broke, he had to wait and go through a lot of hoops to get a new one.
Barriers to care	Waiting for a transplant	The progression of the transplant list is no longer linear like in the past when he was very sick, waiting to get his lung transplant. Rather than waiting for the person ahead of you to get a lung transplant or die to move up the list, the system now takes into account many factors such as quality of life and severity of the condition.
		The major barrier he faced in the healthcare system was waiting for organs for transplantation. He was placed on a waiting list for a kidney transplant for many years.
		He’s been waiting for a kidney transplant, but he got taken off the list when he had diabetic foot infections. Now he’s back on, but he can’t travel to his daughter’s college graduation or see his grandchildren out of state because if he leaves the state and a kidney becomes available, he’ll miss it.
	Interference with daily living	One of the main barriers was the difficulty finding a location for dialysis, as he worked the night shift and most places were already closed by the time he would be able to arrive.
		It’s difficult to travel because he has to find a dialysis unit and set up M/W/F dialysis wherever he goes.
		Showering with the port in was difficult since he couldn’t let the catheters get wet.
		It was difficult scheduling plans around all the hospital visits.
		She needed lab work and pyridostigmine for her myasthenia gravis. But she was away at college in a rural community where her prescription was not on the formulary and lab work had a two-week turnaround time.
	Personal responsibility	The patient blames himself for not getting good care. He said that he knew about diabetes. His mother and father had diabetes, his father lost a leg to it. He was told how to take care of it, but he was a kid, he forgot about it and it caught up to him.
		As HIV treatments progressed, she experienced different side effects and she had a hard time getting herself to take the meds everyday.
		Patients are apt to not take their medications daily if they are feeling well and do not understand the importance of consistent therapy.
		Monitoring her diet and maintaining the cornstarch regimen every 4 hours takes a great deal of self-control, which is really hard for a teenager who wants to keep up with her friends.
Support systems	Health professionals	The patient emphasized the importance of a strong support network and a strong team of healthcare professionals in helping her manage her chronic illness.
		She explained that it was very helpful to have a consistent team of doctors who understood her chronic illnesses and found it comforting to see the same nurses and healthcare professionals each time that she was admitted to the hospital.
		He frequently uses the help of the CF foundation, that advocates for CF patients and their families. They provide legal advice/information, help deal with insurance companies, offer nutritional advice and help CF patients enroll in various assistance programs. This foundation also reviews and provides guidelines to CF-specialists.
		B’s care team has assisted with his home care, so he can live at home and have his needs met with family assistance. B has also found support and resources through MDA (Muscular Dystrophy Association), through which he attended camp for 10 years.
		B has an interdisciplinary care team consisting of neurology, physical therapy, orthopedics, pulmonology, cardiology, bracing and wheelchair makers.
	Family and community	Mr. S has the support of his wife who makes sure that his wound is bandaged and taken care of.
		She also stressed the importance of peer and family support and being willing to ask friends for help rather than trying to do everything alone.
		She acknowledges how much her support system has helped her overcome challenges. Her story emphasizes the role of community in maintaining the physical and emotional health of a patient.
		I’m amazed at the strength and fortitude of these mothers. They adjust their lives to provide a daily routine for their children so it is just part of life: whether it’s getting up every 4 hours to give her daughter with von Gierkes disease corn starch, or teaching her child to be “PKU strong” with a special diet or managing the insulin on her type I diabetic child, or attending school everyday pushing the wheelchair for her child with osteogenesis imperfecta.
		19 year old Z. with PKU is now the person who comes to the clinic to talk to parents to calm their fears and prove that their child will be OK and grow up normally. They have become mentors to others families with PKU.

Abbreviations: OI, osteogenesis imperfecta; PKU, phenylketonuria; CF, cystic fibrosis.