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

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.