PARENTS PERCEPTIONS OF HELPFUL VS UNHELPFUL TYPES OF SUPPORT IN MANAGING THE CARE OF PREADOLESCENTS WITH CHRONIC CONDITIONS

Objective: To identify parents' perceptions of helpful vs unhelpful ty pes of social support received in managing the care of preadolescents with chronic conditions. Design: Multimethod cohort study with 1-year follow-up. Setting: General community. Participants: Volunteer, consec utive sample of parents of 124 preadolescents with a variety of chroni c conditions. Methods: In-depth, in-home interviews conducted with par ents. Quantitative data from the Social Support Assessment questionnai re was used to assess and compare sources and types of helpful support at baseline and 1 year later. Content analytic methods were used to c ategorize unsupportive behaviors described by parents during the first interview. Results: Both mothers and fathers reported that other fami ly members were the primary source of helpful emotional and tangible s upport, while health care providers were the primary source of helpful informational support. The amount of perceived support front family m embers, community members, and service providers stayed relatively sta ble over time, except that fathers reported a significant increase in helpful emotional anti informational support from extended family memb ers from baseline to 1 year later. Also, 388 incidents of unsupportive behaviors were identified; the majority of these behaviors were attri buted to health professionals and extended family members. Conclusion: While patterns of perceived support remained relatively stable over a l-yt:ar period, reports of unsupportive behaviors suggest gaps in ser vice and problems that must be addressed to improve the care that chil dren with chronic conditions anti their families receive.