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Parents' Perceptions of Helpful vs Unhelpful Types of Support in Managing the Care of Preadolescents With Chronic Conditions
Ann W. Garwick, PhD;
Joan M. Patterson, PhD;
Forrest C. Bennett, MD;
Robert W. Blum, MD, PhD
Arch Pediatr Adolesc Med. 1998;152:665-671.
Objective To identify parents' perceptions of helpful vs unhelpful types 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, consecutive sample of parents of 124 preadolescents with a variety of chronic conditions.
Methods In-depth, in-home interviews conducted with parents. Quantitative data from the Social Support Assessment questionnaire was used to assess and compare sources and types of helpful support at baseline and 1year later. Content analytic methods were used to categorize unsupportive behaviors described by parents during the first interview.
Results Both mothers and fathers reported that other family members were the primary source of helpful emotional and tangible support, while health care providers were the primary source of helpful informational support. The amount of perceived support from family members, community members, and service providers stayed relatively stable over time, except that fathers reported a significant increase in helpful emotional and informational support from extended family members from baseline to 1 year later. Also, 388 incidents of unsupportive behaviors were identified; the majority of these behaviors were attributed to health professionals and extended family members.
Conclusion While patterns of perceived support remained relatively stable over a 1-year period, reports of unsupportive behaviors suggest gaps in service and problems that must be addressed to improve the care that children with chronic conditions and their families receive.
From the Maternal and Child Health Program, University of Minnesota Schools of Public Health (Drs Garwick and Patterson) and Medicine (Dr Blum), Minneapolis, and the Child Development and Mental Retardation Center, University of Washington School of Medicine, Seattle (Dr Bennett).
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