A Family Perspective Approach on Pediatric IBD for Public Health Professionals
Master’s Student in Nutritional Sciences
Family and adult caregivers are important pillars of social support and disease and symptom management for young children with pediatric inflammatory bowel disease (PIBD).1 Approximately 53 million adults in the United States have performed caregiving duties in the last 12 months2 and an estimated 70,000 children are diagnosed with pediatric inflammatory bowel disease (PIBD).1 Because family is an integral part of PIBD management, it is important that public health professionals approach practice and policies related to PIBD and other chronic diseases with a family perspective in mind.
What is PIBD?
Inflammatory bowel disease (IBD) is classified by chronic inflammatory disorders that affect the gastrointestinal tract.2 The IBD classification includes Crohn's Disease and ulcerative colitis,2 both of which can present during childhood. However, IBD is commonly believed to be a disease that only affects adult Caucasians.3 This misperception can make it difficult for young, minority children to be diagnosed with IBD, leading to more severe symptoms and complications,2,4,5 mental health issues,2,6,7 and quality of life issues for children and their families.8,9
Social functioning with peers can also be difficult for children with IBD symptoms.
Pediatric IBD symptoms can impact many aspects of the lives of both patients and their caregivers. Children with pediatric IBD have been found to suffer from higher rates of depression and anxiety than children with any other chronic illness.2 Unpredictable and socially limiting symptoms, delayed growth and puberty, and frustrating and uncomfortable treatment can impact psychological behaviors of children with IBD.6,7 Social functioning with peers can also be difficult for children with IBD symptoms,7 which makes family members and adult caregivers important social support sources for children with PIBD.8,9
The Importance of Family Systems and Caregivers
Family systems and trusted adult caregivers are essential for pediatric IBD patients. Because family systems are highly interconnected, the wellbeing of one family member has the potential to impact the wellbeing of other members of the family system—a concept known as the family system theory.9,10 While behaviors of PIBD patients and disease severity may influence parental and caregiver stress in a family, parental stress and family factors can also affect quality of life for PIBD patients.8
To better serve diverse families impacted by PIBD, public health professionals should apply a family impact approach and keep a family perspective in mind. One way to do this is by instituting cross-systems collaborations between health care, schools, and mental and behavioral health systems to better serve the needs of PIBD patients and families.11 Not only could this streamline and condense health appointments to reduce time spent in healthcare settings, it also would help schools better understand PIBD treatment plans and accommodations for patients to thrive in school settings.
Health professionals should encourage health literacy, education, and communication programs for PIBD patients and their families.
Similarly, cross-systems collaboration would also integrate mental health treatment regimens. With the connection between mental health issues and PIBD symptoms and the impact on caregiver’s mental health as well,6-9 it is important that mental health of both patients and their caregivers be addressed early on following diagnosis.
Likewise, health professionals should encourage health literacy, education, and communication programs for PIBD patients and their families. Starting patients and their families in these programs early after diagnoses could help ensure patients and families are informed about PIBD.
With these impacts in mind, professionals should connect families to support groups that can offer social support through this cross-systems collaboration effort. Health literacy groups for patients and family members can help PIBD patients lead healthier, controlled lives and can improve the transition from pediatric to adult IBD care.12,13
Public health professionals working with pediatric IBD can employ a family perspective approach to support improved quality of life for children and their families
Families often report feeling as if they lose social support from their friends and other family members after their children are diagnosed with PIBD.7 The cross-systems collaboration approach could also help families connect to groups that could offer social support from family peers with previous experience navigating health, education, and behavioral health systems.
In addition, professionals working with PIBD patients and their families should continually undergo cultural humility trainings and use a cultural humility approach with their work.14 This can help professionals engage and better serve families of all kinds who are dealing with PIBD. PIBD affects patients of all ages, races, ethnicities, genders, and socioeconomic status. It is essential for professionals to have culturally aware mindsets and attitudes.
Family is an important aspect for patients suffering from PIBD. From acting as social support systems to helping navigate disease management and care, family members and adult caregivers are vital to the well-being and quality of life of children with PIBD. With family playing an integral part in PIBD disease management, public health professionals working with PIBD families should see better disease outcomes and improved quality of life for children and their families with a family perspective approach.
- Rosen MJ, Dhawan A, Saeed SA. Inflammatory Bowel Disease in Children and Adolescents. JAMA Pediatr. 2015;169(11):1053-1060.
- Public Policy Institute. Caregiving in the US 2020. AARP Research Report.
- White JM, O’Connor S, Winter HS, et al. Inflammatory Bowel Disease in African American Children Compared with Other Racial/Ethnic Groups in a Multicenter Registry. Clinical Gastroenterology and Hepatology 2008;6(12):1361-1369.
- Dotson JL, Cho M, Bricker J, et al. Race Differences in Initial Presentation, Early Treatment, and 1-year Outcomes of Pediatric Crohn’s Disease: Results from the ImproveCareNow Network. Inflammatory Bowel Diseases 2017;23(5):767-774.
- Barnes EL, Kochar B, Long MD, Martin CF, Kappelman MD. Minority Pediatric Patients with Inflammatory Bowel Disease Demonstrate an Increased Length of Stay. Inflammatory Bowel Diseases 2017;23(12):2189-2196.
- Oliveira SB, Monteiro IM. Diagnosis and Management of Inflammatory Bowel Disease in Children. BMJ 2017;357:1-15.
- Reed-Knight B, Mackner LM, Crandall W. "Psychological Aspects of Inflammatory Bowel Disease in Children and Adolescents." In Pediatric Inflammatory Bowel Disease: Third Edition. 2017:615-623.
- Gray WN, Boyle SL, Graef DM, et al. Health-Related Quality of Life in Youth with Crohn’s Disease: Role of Disease Activity and Parenting Stress. Journal of Pediatric Gastroenterology and Nutrition 2015;60(6):749-753.
- Diederen K, Haverman L, Grootenhuis MA, Benninga MA, Kindermann A. Parental Distress and Quality of Life in Pediatric Inflammatory Bowel Disease: Implications for the Outpatient Clinic. Journal of Pediatric Gastroenterology and Nutrition 2018;66(4):630-636.
- Chatters L. HBHE 629 Families and Health Class from February 6, 2020. Ann Arbor, MI: University of Michigan.
- Herrenkohl TI. Cross-System Collaboration and Engagement of the Public Health Model to Promote the Well-Being of Children and Families. Journal of the Society for Social Work and Research 2019;10(3):319-332.
- Huang JS, Tobin A, Tompane T. Clinicians Poorly Assess Health Literacy-Related Readiness for Transition to Adult Care in Adolescents with Inflammatory Bowel Disease. Clinical Gastroenterology and Hepatology 2012;10(6):626-632.
- Plevinsky JM, Greenley RN, Fishman LN. Self-Management in Patients with Inflammatory Bowel Disease: Strategies, Outcomes, and Integration into Clinical Care. Clinical and Experimental Gastroenterology 2016;9:259-267. doi:
- Fisher-Borne M, Cain JM, Martin SL. From Mastery to Accountability: Cultural Humility as an Alternative to Cultural Competence. Social Work Education 2015;34(2):165-181.
About the Author
Kaitlyn Rau is a second-year master’s student at the University of Michigan School of Public Health, where she is studying to become a public health professional and registered dietitian. Rau researches food insecurity in Dr. Cindy Leung's lab and volunteers with children at Sprouting Chefs in Ann Arbor.