Original article
Lagging Behind or Not? Four Distinctive Social Participation Patterns Among Young Adults With Chronic Conditions

https://doi.org/10.1016/j.jadohealth.2013.09.017Get rights and content

Abstract

Purpose

Typical childhood and adolescent development and acquiring self-management skills are crucial for a satisfying adult life and autonomy in social participation. The aims of this study were to identify patterns of autonomy in social participation and to explore differences between these patterns.

Methods

Adolescents with various chronic conditions participating in a survey in 2006 (T0) were re-invited for a follow-up study (T1) in 2012. The young adults (18–25 years of age) assessed self-management skills, their condition's impact on school or work, health-related quality of life (HRQoL), and social participation in various domains. Patterns were identified through cluster analysis. Differences between patterns were analyzed in bivariate and multivariate analyses.

Results

Compared with healthy age-mates, our sample (n = 483) generally lagged behind in social participation. Four patterns emerged: typical developers, financially secure laggers, slow developers, and outgoing laggers. The patterns differed regarding gender, educational level, attending special education, having disability benefits, and degree of physical limitations. Groups with a higher level of autonomy in social participation did not necessarily have higher HRQoL but did report higher self-efficacy and independence at both measurements.

Conclusions

Autonomy in some participation domains can coincide with a lack of autonomy in others. In addition, better social participation does not necessarily correlate with higher HRQoL, or vice versa. Yet, more social participation was associated with more self-efficacy and independence. Our results emphasize that there is no standardized approach. Clinicians should take care to address all life areas in clinical practice to screen patients' lived experiences and the need for social and self-management support.

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.

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