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

BackgroundA 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.ObjectivesWe 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.MethodsData 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.ResultsYouth 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.ConclusionsFor 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.