Self-management interventions for young people with chronic conditions: A systematic overview

Highlights

• We provide a systematic overview of self-management interventions for chronically ill young people aged 7–25 years.

• Interventions’ content, formats, underlying theories and outcomes used in evaluation studies were reviewed.

• Most studies aimed at medical management and were unclear about theoretical bases, while formats and used outcomes varied.

• Our overview may assist professionals in determining the breadth and focus of the support they provide.

• We present a content-based evaluation framework that may help researchers to select measures for evaluation studies.

Abstract

Objective

To provide a systematic overview of self-management interventions (SMI) for young people with chronic conditions with respect to content, formats, theories, and evaluated outcomes.

Methods

Embase, Medline, PsycINFO, Web-of-Science, CINAHL, and Cochrane were searched. Reviews’ reference lists were scrutinized. Selected studies were: Original research articles in English published between 2003 and March 2014; about the evaluation of SMI for 7 to 25-year-olds with somatic chronic conditions/physical disabilities; with clear outcomes and intervention descriptions. The classification of medical, role and emotion management served to review content. Formats, theories, and evaluated outcomes were summarized.

Results

86 studies were reviewed. Most aimed at medical management and were unclear about theoretical bases. Although a variety of outcomes was evaluated and the distribution over self-management domains was quite unpredictable, outcomes conceptually related to specific content. A content-based framework for the evaluation of self-management interventions is presented.

Conclusions and practice implications

: SMI relate to self-management tasks and skill-building. Yet, conceptualizations of self-management support often remained unclear and content focuses predominantly on the medical domain, neglecting psycho-social challenges for chronically ill young people. Future evaluations should match outcomes/themes to content and characteristics. Our framework and overview of SMI characteristics and outcomes may assist clinicians in providing self-management support.

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.