ReviewSelf-management interventions for young people with chronic conditions: A systematic overview
Introduction
Worldwide, the number of young people living with a chronic condition or with special health care needs is growing. In the USA, the 2009–2010 National Survey of Children with Special Health Care Needs showed that 15.1% of all under 17-years-olds fell in this category [1]. In the Netherlands, the most recent estimations are 14% of all under 18-year-olds [2] and 11% of all under 25-year-olds [3].
Chronic illness affects young people in many ways during their transition to adulthood and adult care [4], [5]. Supporting them to develop independence and self-management skills is therefore a key task of healthcare professionals. For that matter, self-management support is considered an integral part of healthcare for all people with chronic conditions [6], [7], [8]. The WHO definition of health was even redefined as “the ability to adapt and self-manage in the face of social, physical, and emotional challenges” [9].
Living with a chronic condition is an “ongoing process of inner negotiation” between social and medical needs [10] or what is described as shifting between the illness-on-the-foreground and wellness-on-the-foreground perspective [11]. Self-management therefore has been defined as “the individual's ability to manage the symptoms and the consequences of living with a chronic condition, including treatment, physical, social, and lifestyle changes” [12]. Note, however, that self-management is not restricted to one's individual ability, especially not in pediatrics where parents tend to play a key role. Adding the phrase “[…] in conjunction with family, community, and healthcare professionals […]” [13] seems to present a more complete picture. This holistic view accounts for the three tasks involved in self-management: medical management (re. treatment), role management (re. social participation), and emotion or identity management (re. emotional consequences of being ill) [14]. Young people with chronic conditions have to learn these tasks, and in supporting them we must take their developmental transition into account [15].
Various self-management interventions (SMI) for the chronically ill are available, but their effectiveness is not clear [16], [17]. This is even more pertinent to SMI in pediatric care [16], [18], [19]. Newman and colleagues [16] emphasize that a theory-based approach is needed to evaluate complex SMI, and recommend a more systematic comparison of different types of SMI [20]. Recent studies on SMI for people with chronic conditions in general [17], [21] and for young people with physical disabilities [19] endorse this view, and it is recommended to standardize SMI evaluation by using a core set of outcomes [19], [22].
We reviewed and systematically compared the characteristics and content of offered SMI for young people (7–25 years) with chronic conditions, their theoretical foundations, if any, and the evaluated outcomes. Based on the results we present content-related outcome measures for the evaluation of different types of self-management interventions.
Section snippets
Study design
A systematic overview, defined by Grant and Booth [23], as a “summary of the literature that attempts to survey the literature and describe it characteristics” was applied. This allows for a systematic comparison of SMI and outcome measures used in evaluation studies. Methodological characteristics according to the ‘Search, Appraisal, Synthesis and Analysis’ (SALSA) framework [23] are: comprehensive searching, quality assessment, narrative synthesis with tabular features, and thematic analysis.
General study characteristics (n = 86)
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Countries: Most studies hailed from the USA (n = 51), followed by the Netherlands (n = 8), the UK (n = 7), Australia (n = 4), Canada (n = 3), Germany (n = 3), Hungary (n = 2), Taiwan (n = 2), Austria (n = 1), China (n = 1), Denmark (n = 1), France (n = 1), Haiti (n = 1), and Norway (n = 1).
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Chronic conditions: Most studies targeted asthma (n = 18), followed by diabetes (n = 16). Six studies targeted several chronic conditions (Table 1).
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Study designs: All but nine studies had fully quantitative study designs. Forty-five of them
The focus of today's self-management support
This review revealed that most interventions for young people represented in the literature solely aim at medical management, like interventions for adults [17], [113], [114]. This is not surprising, because medical tasks form the very core of healthcare. Moreover, these tasks represent common ground for healthcare professionals and people with chronic conditions, since medical consultations without fail will address symptoms and treatments. This may also explain why very few interventions
Acknowledgements
The study was part of the Self-management and Participation Innovation Lab, supported by SIA-RAAK, the Foundation Innovation Alliance with funding from the Dutch Ministry of Education, Culture and Science (OCW) (PRO-02-025). The authors thank the information specialist of the Erasmus MC medical library, Wichor Bramer, for his assistance in defining the search strategy. Ko Hagoort is thanked for his editorial assistance. Finally, the members of our Self-management & Participation Research Group
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