Original articleLagging Behind or Not? Four Distinctive Social Participation Patterns Among Young Adults With Chronic Conditions
Section snippets
Participants
Participants of a Web-based survey in 2006 (T0) [20] were re-invited for a similar survey 6 years later (T1). In 2006, they were adolescents aged 12–18 years had been under treatment in the Erasmus Medical Centre–Sophia's Children's Hospital Rotterdam for more than 3 years. Contact information and death notices were retrieved from the hospital's electronic patient registry. Eligible YAs received an invitation letter providing relevant information and a unique password to log in on a secured Web
Response
Of the 1,039 participants in the original study, 13 had died and 25 could not be traced. Consequently, 1,001 were invited, 88 of whom returned a postcard stating that they declined to participate further. Eventually, 518 YAs (net response, 51.8%) submitted the survey. Backward logistic regression analysis showed that nonresponse was associated with male gender (OR, .57; 95% CI, .43–.74), and non-Dutch ethnicity (OR, .49; 95% CI, .33–.74) (χ2 = 29.0, degrees of freedom = 2; p < .001; R2 = .04;
Discussion
We identified four distinctive patterns regarding autonomy in social participation among YAs with chronic conditions. Because this study is the first to our knowledge to explore such patterns, we cannot compare results with pattern distributions in similar or other populations. However, evidence from previous studies supports our finding that these YAs generally lagged behind in social participation compared with healthy age-mates [7], [11], [29], [30]. We also found that full autonomy in one
Conclusions
The variety of patterns of autonomy in social participation shows that achieving independence differs across life areas, and underscores the notion that these life areas together constitute reality for YAs. It appeared that more social participation does not necessarily lead to higher HRQoL, or vice versa, but seemed to be associated with more self-efficacy and independence. Clinicians should be aware of this and may make use of various tools to address all life areas to screen patients' lived
Acknowledgments
The authors thank Bert van der Heijden for having suggested this follow-up study. The authors also thank the other members of the On Your Own Feet Research Group, Jos Latour, Susan Jedeloo, and Linda van der Knaap, for their support in the design and execution of the study. Laila Oumansour, Wendy de Boer, Marjolijn Bal, and Mariëlle Peeters are thanked for their assistance in collecting data. Kimberly Onderdijk and Esmee Kuppen helped pretest the follow-up questionnaire. Marij Roebroeck and the
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Conflicts of Interest: The authors have no conflicts of interest to report.