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Resilience Factors in Paediatric Inflammatory Bowel Disease: Health Care Provider, Parent and Youth Perspectives

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Abstract

Exploring factors related to resilience in youth with inflammatory bowel disease may elucidate modifiable risk factors and inform interventions. Yet, how resilience factors may impact positive adaptation for youth with inflammatory bowel disease is not clear. We conducted an exploratory qualitative study on specific factors that bolster resilience in youth with IBD from health care provider, parent and youth perspectives. Twelve multidisciplinary health care providers, 15 parents of youth with IBD, and 15 youth with IBD were interviewed about their perspectives on resilience in youth with IBD. Inductive content analysis was conducted on the transcripts using a stepwise process of open coding, category creation, and abstraction. Higher level categories were identified across the three participant groups: individual (acceptance of IBD, openness about living with IBD, upholding a sense of self, sense of control), familial (disease self-management), and environmental (relationship with the medical team and meaningful social support). This is the first study to highlight that these three participant groups identified specific characteristics that could be fostered in routine IBD care and targeted by interventions aimed at bolstering resilience in youth with IBD.

Highlights

  • We used qualitative methods to explore the perspectives of HCPs, parents and youth regarding resilience factors in adolescents with IBD.

  • Resilience was defined as an ability to adapt to change and persist through difficult situations, all while remaining engaged in valued activities.

  • Participants identified 7 characteristics that were indicative of resilient youth; spanning individual, familial and environmental factors.

  • Characteristics included acceptance of IBD, openness about IBD, upholding a sense of self, sense of control, disease self-management, relationship with the medical team and meaningful social support.

  • Characteristics identified in this study can be fostered during IBD care as well as be targeted by psychoeducational and behavioural interventions.

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Author Contributions

All authors contributed to the study conception and design. Material preparation, data collection and analysis were performed by N.W., A.I., and S.A.K. All authors reviewed the and discussed analysis. The first draft of the manuscript was written by S.A.K. and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

Funding

This research was generously supported by funds from The Louise and Alan Edwards Foundation via research fellowship. Dr. Ahola Kohut’s salary was supported by the Inflammatory Bowel Disease Centre at the Hospital for Sick Children. The authors have no relevant financial or non-financial interests to disclose.

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Correspondence to Sara Ahola Kohut.

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Conflict of Interest

The authors declare no competing interests.

Ethical Approval

This study was reviewed and approved by The Hospital for Sick Children’s Research Ethics Board (#1000056622).

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Informed consent was obtained from all individual participants included in the study.

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Ahola Kohut, S., Forgeron, P., McMurtry, M. et al. Resilience Factors in Paediatric Inflammatory Bowel Disease: Health Care Provider, Parent and Youth Perspectives. J Child Fam Stud 30, 2250–2263 (2021). https://doi.org/10.1007/s10826-021-02040-z

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  • DOI: https://doi.org/10.1007/s10826-021-02040-z

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