Measuring parent-child shared management of chronic illness

Abstract

Over time, most children with special health needs must become partners in their disorder management. Because most care of chronic conditions takes place in the home, parents assume significant responsibility in starting and supporting the child's role in parent-child shared management over time. This article describes findings from analysis of one attempt to measure this important construct.

Methods: Cross-sectional descriptive study with 129 parents of children with chronic conditions.

Results: Internal consistency of the shared management scale was adequate (Cronbach's Alpha: overall scale, 0.91; and subscales: desire, 0.79; knowledge, 0.76; and current actions, 0.86). Observed relationships were in theoretically expected directions. In unadjusted univariate analyses, there were statistically significant associations between parent-child shared management and each of the following variables: (a) condition grouping and severity, (b) parent self-efficacy and coping, (c) amount and frequency of child's limitation to do things, and (d) emergency visits in the past 6 months (all at p < 0.01 levels). Adjusted multivariable analysis retained condition severity, parent self-efficacy, and coping as significant factors.

Conclusions: The parent-child shared management tool can be used in research to broaden understanding of this important construct and identify precursors and outcomes of high or low shared management in a family. Nurses might use the tool in clinical practice to more accurately gauge parent desire for, knowledge of, and current actions in support of parent-child shared management so interventions can be individualized to the family's unique wishes.