Table 1.

Interview Guide

1) Health Care theme: Gaining and maintaining access to health care in general and principal provider specifically for SLE How long between first symptoms and diagnosis? How long between diagnosis and reaching steady state of a treatment plan with health care providers? Regular source of care Principal provider of care How did you get to the regular source of care and a principal provider of care? What were fits and starts? How much was done yourself and how much by involving others? Others who knew people who had SLE or other serious conditions? Others who provided tangible and intangible support? Once in system, what has worked about the regular source of care and principal provider and what not? Insurance issues Accessibility of care Communication/coordination Falling between cracks Shared decision-making What about SLE makes it difficult to get the right doctor and stay with him or her?

2) Living with SLE theme: Description for someone newly diagnosed with SLE what makes this illness difficult for you? In your mind, what triggers a flare in your lupus? What are the stresses that you know will make your lupus worse? What helps to keep it in check? How do you get help from your family and friends to deal with these issues of having SLE? What do they do to help? What do you wish they could do for you but don’t? Moving beyond your immediate family and friends, what in your neighborhood helps you deal with lupus and what gets in the way? Are there a lot of people with whom you can talk about your lupus? Do these people help you deal with your lupus by doing things for you or talking things through with you? What in the neighborhood got in the way of getting connected to the regular source of care and main lupus doctor? What in the neighborhood helps you deal with your lupus day by day and what is a source of stress? What in this neighborhood helps reduce the stress of having lupus or at least helps you deal with your lupus? What role if any does your neighborhood play in triggering lupus flares?

3) Open-ended closing to see if there are any issues not covered by the health care and living with SLE themes. What would be the ideal physician to help you manage your lupus? What would that physician do for you? What do you need to help you deal with your lupus? What would you say to people who ask what they or your friends and family can do to help you deal with your lupus? What would you say to people who ask what would be a good neighborhood for someone with lupus to live in?