Parent Satisfaction in an Outpatient Pediatric Bone Marrow Transplant Setting

The Bone Marrow Transplant (BMT) experience is stressful and challenging for children and their parents.  This continues after the child has been discharged from the hospital and is coming to the outpatient clinic for care. One way to help decrease the stress and challenges for families is to ensure that parents are satisfied with the care their child is getting. However, there are not any questionnaires to measure this. There are general questionnaires that many hospitals and clinics use but we don't know if they ask the right questions to make care after a BMT the best it can be.

In this study we will explore what is important to parents when their child is receiving care in the outpatient clinic after having a BMT.  We will ask parents in small groups or individually about their needs and thoughts about outpatient BMT care.  Based upon these results, we will develop a questionnaire to measure parent satisfaction. Then we will use it with families to see if it is doing a good job of measuring how they feel about the care they get in the outpatient clinic. Then we will make any changes needed based on what these parents' feedback. Our goal is to have a good questionnaire to use to see how satisfied parents are so that we can improve the care we give to their children.