Focus group methodology for patients, parents, and siblings.

This report describes methodology that can be used as a guideline for the planning, conduct, analysis, and interpretation of data from focus groups for parents/caregivers, siblings, and children diagnosed with an illness; the methodology provides tools for the conduct of such groups in the same or similar populations. Separate focus group sessions were conducted for parents/guardians, siblings, and affected children. Methodological enhancements in planning and conducting the focus group sessions include development of a sampling frame to derive a representative group of participants, standardization of procedures through the use of a moderator's training manual tailored to each group, identification of topics to broaden content areas and stimulate discussion, and creation of a comfortable environment in which participants could express issues. Statistical considerations regarding design and conduct of the focus group session, as well as acquisition, analysis, and interpretation of data are presented with regard to validity, reliability, and generalizability of information gathered from focus group interviews. Scripts, topics, and timeframes that were initially devised by content experts were validated further and revised for direct use or adaptation by clinicians in the conduct of focus group sessions for parents/guardians, siblings, and affected children. Application of this methodology is intended to promote generalizability, reliability, and validity of information obtained, and to enable health care practitioners to provide better care to young patients and their families.