Future plans and social/recreational activities of youth with special health care needs: The implications of parental help in completing surveys

Academic Article


  • Background: A major focus of the literature on youth with special health care needs (YSHCN) is the transition to adult health care. As perceptions of disability are a product of interactions between youth and their environment, it is important to understand youth's needs and experiences beyond health care. Few studies have addressed social/recreational activity participation and future plans and none have included parent/caregiver help in survey completion as a potential factor impacting responses. Objectives: We describe activity participation and identification of future plans among YSHCN and examine the impact of receiving parent/caregiver assistance to complete a survey on these responses. Implications for research, policy, and practice affecting programs serving and providing transition assistance for YSHCN are discussed. Methods: Data are from a survey of YSHCN conducted during Alabama's 2010 Title V Maternal and Child Health Needs Assessment. Analyses included descriptive statistics, bivariate analysis, and multivariable logistic regression. Results: Youth who received help completing the survey were less likely to report participating in certain social/recreational activities and key future plans, including hobbies, getting married, having children, and working for pay. Conclusions: For YSHCN, parent/caregiver assistance to complete a survey is a critical consideration in analyses and interpretation of results. Whether, how much, and what type of help received may represent a more objective proxy measure of perceptions of condition severity or impact on abilities than do self-reported ratings of these factors. Our results also raise questions about the distinctions between youth and parent/caregiver perceptions of independence, participation, and potential. © 2013 Elsevier Inc. All rights reserved.
  • Authors

    Published In

    Digital Object Identifier (doi)

    Author List

  • Preskitt JK; Goldfarb SS; Mulvihill BA; Colburn S; Davis MM
  • Start Page

  • 343
  • End Page

  • 351
  • Volume

  • 6
  • Issue

  • 4