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Development of self-management in pediatric inflammatory bowel disease: a qualitative exploration

Development of self-management in pediatric inflammatory bowel disease: a qualitative exploration

De Jesus, Hilarious, Ooms, Ann, Norton, Christine, Dibley, Lesley ORCID: 0000-0001-7964-7672 and Croft, Nicholas (2019) Development of self-management in pediatric inflammatory bowel disease: a qualitative exploration. Journal of Nursing Education and Practice, 9 (11). pp. 75-84. ISSN 1925-4040 (Print), 1925-4059 (Online) (doi:https://doi.org/10.5430/jnep.v9n11p75)

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Abstract

Background: Self-management programs in pediatric chronic conditions, such as asthma and diabetes were effective in improving health-related outcomes. Similarly, self-management in the context of adult in inflammatory bowel disease (IBD) safely reduced healthcare costs. Nevertheless, evidence on self-management in pediatric IBD is scant. This study aims to explore self-management in pediatric IBD by exploring the childhood experience of IBD and how it is understood by the participants.

Methods: Using a constructivist grounded theory approach, seven participants aged 8-17 years old were recruited in a tertiary metropolitan pediatric IBD center. Semi-structured interviews using topic guides and optional draw-and-write methods were used for data collection. Multi-level coding and constant comparison methods were utilised during data analysis.

Results: The pediatric IBD self-management theory described the phenomenon of self-management through the relationship of categories that emerged from the study. Self-management starts off as a parent-dominant process that progressed to a more autonomous form with increasing disease experience. The experience was described as filled with struggles and a developing sense of control in managing these struggles. Autonomous self-management developed from the interaction of information, insight and integration. Enablers and deterrents were the contextual factors that influenced the development of self-management.

Conclusions: Establishing identity both as a psychosocial developmental task and a disease-specific task is the core of self-management in childhood IBD. Future self-management programs should explore the role of structures around the child (family, school and healthcare systems) and the implementation of a proactive philosophy of involving children in managing their condition.

Item Type: Article
Uncontrolled Keywords: self-management, pediatric IBD, grounded theory, qualitative study, exploratory study, adolescents, self-care
Subjects: R Medicine > R Medicine (General)
Faculty / Department / Research Group: Faculty of Education, Health & Human Sciences
Faculty of Education, Health & Human Sciences > Institute for Lifecourse Development
Faculty of Education, Health & Human Sciences > Institute for Lifecourse Development > Centre for Chronic Illness and Ageing
Last Modified: 03 Apr 2020 14:04
Selected for GREAT 2016: None
Selected for GREAT 2017: None
Selected for GREAT 2018: None
Selected for GREAT 2019: None
Selected for REF 2020/1: None
URI: http://gala.gre.ac.uk/id/eprint/27593

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