Paediatric IBD is an increasing morbidity. IBD as a lifelong condition creates inevitable added challenges to a healthcare institution. Self-management is explored as a potential innovation to meet this demand, similar to other paediatric conditions such as asthma and diabetes. However, IBD, while also a chronic condition, is unique compared to paediatric asthma and diabetes—such as the unpredictable relapse despite adherence and lack of clear target behaviour. On the other hand, functional, multi-dimensional adult models of self-management in adult IBD have also demonstrated positive health-related outcomes. However, IBD self-management suffers from conceptual ambiguity. Therefore, there is a need to study self-management in the context of paediatric IBD. To date, current evidence in paediatric IBD self-management is limited to medication adherence. Although related, self-management is more than adherence.Aim:
This study seeks to explore self-management in the context of children and adolescents with IBD.Methods:
An exploratory, cross-sectional, constructivist grounded theory approach is used in this study. Participants are recruited using a 2-staged theoretical sampling strategy. Seven participants aged 8 to 17 years old were recruited at an IBD referral centre. Interview using topic guides served as a primary data collection method complemented with the optional use of the draw-and-write technique. The draw-and-write technique and script method during interviews provides developmentally appropriate data collection tools. Multi-level coding and constant comparison method are utilised during data analysis.Results:
The analysis uncovered the categories of Struggling, Control, Enablers, Deterrents, Isolation, Information, Insight, and Integration. Struggling describes the burden imposed by IBD and its sequelae and includes Isolation. Control is associated with the concept of management. The enablers and deterrents are the modifiable factors surrounding self-management. Integration of information and insights are linked with effective self-management. Self-management is defined as the exercise of the “negotiated self” to regain the perceived loss of control through learned behaviours, negotiation, and psychological adaptation.Conclusions:
The resultant categories are developed into a unifying theory - the ACES theory. At initial diagnosis, self-management is a parent-centric process that moves along a continuum to evolve into an autonomous form. This continuum coincides with the usual psychosocial developmental task of adolescence—establishing self-identity. In paediatric IBD, establishing self-identity occurs simultaneously as a psychosocial and disease-related task. The continuum happens with the fluctuating disease-illness trajectory as the background. Acceptance is uncovered as the significant and necessary milestone for the transition from parent-dependent to the autonomous form of self-management. This is a function of the successful interaction of information, insight, and integration. Self-management exists in the context of modifiable enablers and deterrents. By modifying these factors, effective self-management can be enabled.