Parents' Perceptions of Helpful vs Unhelpful Types of Support in Managing the Care of Preadolescents With Chronic Conditions

Abstract

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.

Daily Living With Distress and Enrichment: The Moral Experience of Families With Ventilator-Assisted Children at Home

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Parents’ Concerns About Issues Related to Their Children's Genetic Conditions

“…Finally, parents were concerned about the child's school performance, psychosocial well‐being, and physical health, as well as the availability of resources within the school setting. The findings from this study extend findings from previous studies in which parents reported perceived barriers to their child's education (Garwick, Patterson, Bennett, & Blum, 1998; Turner‐Henson et al., 1994). Based on these concerns, enhancing communication between parents, schools, and health professionals can improve the schools’ understandings of the children's conditions, as well as the support and resources needed to ensure a positive school experience for children and parents (Kliebenstein & Broome, 2000).…”

Parental food allergy information needs: a qualitative study

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