Part 3 The Shero Family
3.2 Shero family case study 1: Medya develops ulcerative colitis
Lucy Shinners
Introduction to case study
Learning Objectives
By the end of this case study you should be able to:
- Understand the organisations that support inflammatory bowel disease (IBD) in Australia and internationally
- Consider the impact that IBD has on the mental wellbeing of IBD sufferers
- Articulate the role of interprofessional team members in promoting culturally sensitive, person-centred care
Scenario
Medya has had difficulty with her bowels since her son Fero was born. Her older son Hedjar doesn’t really know much about it as his mother is very private. However, he sees her crying quietly in her bedroom one afternoon. She tells him she has had a lot of pain when she goes to the toilet, and now it’s getting worse. After a few days of nausea and lack of appetite, she has now started vomiting overnight. Hedjar is aware that lately his mother has not been eating very much, has lost weight, and does not often leave the house. Obviously, because it is a very private matter for her, they have not discussed what has been happening until now. Medya agrees it is time to seek medical attention. She is embarrassed that she will have to take her son with her to assist with interpreting her private information to the doctor. After Hedjar offers to find one of her friends from the community centre to come with her, she says no to this. He instead arranges an appointment for her at the local doctor’s surgery. As her usual doctor is not there, he requests a female doctor so that his mother will feel more comfortable and less embarrassed.
They arrive at the local doctor’s surgery and are ushered into the rooms. Although Medya is painfully shy, the doctor speaks gently and establishes that Hedjar can interpret for his mother and that she consents to this. Medya reveals that for the past 3 months she has had an increasingly difficult time with her bowels. Ever since Fero’s delivery and the damage it has caused, her bowel motions have been loose; she has had to rush to the toilet to make sure she does not have an accident. However, the frequency of her bowels opening has increased in the last 2 months, which has meant she has had to stay close to home to ensure she doesn’t have an accident. She tells the doctor she has started vomiting overnight and when she noticed blood on the toilet paper this morning, she felt very worried.
The doctor takes her vital signs, asks a series of questions about her past surgery after the birth, her recent bowel changes, her diet and the symptoms she has been feeling since the day before. She examines her abdomen, which Medya describes as more painful than usual, listens for bowel sounds which are very active and examines her old wounds on her perineal and rectal areas which appear red and inflamed. She decides to send Medya to the hospital to seek urgent attention for IBD exploration.
Case study questions
- Who are the local and international organisations that support the IBD community?
- What are the mental health impacts of people suffering with IBD?
- Who is in the interdisciplinary team caring for a patient with IBD?
- How do you provide culturally sensitive care to an IBD patient?
Key information and links to other resources
Australian organisations that support bowel disease
The latest research suggests that inflammatory bowel disease has increased in prevalence globally (Alatab et al., 2020). It is estimated that almost 10% of the Australian population experiences IBD and the economic and social impacts of this disease are far reaching (Busingye et al., 2021). Both national and international organisations pursue research, education and funding and Australia has developed a national strategic action plan.
The International Organisation of Inflammatory Bowel Disease (IOIBD) conducts research that promotes the health of people with IBD worldwide and sets the direction for patient care and education. Access IOIBD publications here.
In Australia, the Crohn’s & Colitis organisation has been working for more than 35 years to provide support services, advice and encouragement to people living with IBD.
The IBD national action plan outlines a series of priority actions designed to improve cooperation between partners, individual and system outcomes.
Psychological health for patients with bowel disease
Research has shown that throughout the lifespan, people who suffer from IBD are more likely to suffer from depression, anxiety and low self-esteem (Byrne et al., 2017; Gralnek et al., 2021). Furthermore, inflammatory bowel disease has been identified as a significant driver of mental illness (Szigethy et al., 2021).
Due to the nature of this condition, people often experience recurrent symptoms which may interfere with their ability to attend social events, work or maintain meaningful relationships. Many people report feeling worried, anxious, embarrassed or ashamed, which can cause them to withdraw socially, reduce their activities or avoid certain situations, all of which lead to poor mental health (Kok et al., 2023; Szigethy et al., 2021). It is important that IBD sufferers understand the close link between the physiology of the body and mental health. If they experience more emergency hospital presentations or disease flares, there is a strong possibility that their mental health could be a contributor. Stress can increase gut sensations, muscle tension and the rate at which food is processed through the system (Szigethy et al., 2021).
Thinking Point
The Crohn’s & Colitis Foundation has produced a series of videos designed to help patients understand more about the impact of this disease on mental wellbeing, offering tips and strategies that they can use.
Write down the key take-home messages you could convey to an IBD patient you are caring for.
Teamwork and collaborative practice
Given IBD’s complex and chronic nature and the fact that it requires long-term care, it is important to understand the multidisciplinary care model needed for IBD patients.
A systematic review exploring healthcare professionals’ roles in managing chronic gastrointestinal diseases in primary care (Prasad et al., 2020) found that gastroenterologists and nurses are the key practitioners who deliver specialised care to IBD patients. Other health professionals who have important roles to play include pharmacists, dieticians, surgeons, social workers, hypnotherapists, psychologists, general practitioners, physiotherapists and psychiatrists.
Thinking Point
Read the following article and write down the 4 main roles that a registered nurse plays when they engage with a patient with IBD:
- Prasad, S. S., Potter, M., Keely, S., Talley, N. J., Walker, M. M., & Kairuz, T. (2020). Roles of healthcare professionals in the management of chronic gastrointestinal diseases with a focus on primary care: A systematic review. JGH Open, 4(2), 221–229. https://doi.org/10.1002/jgh3.12235
Healthcare professionals require specialised training to care for IBD patients. Crohn’s & Colitis Australia offers targeted education. See the Crohn’s & Colitis support for health professionals’ website for more details.
Cultural diversity
Healthcare professionals must be able to work and communicate effectively with people from different cultural backgrounds. While a patient-centred approach to IBD management is critical, culturally appropriate care is not commonly followed or understood. A study surveying IBD sufferers from South Asian communities in the United Kingdom suggests that mainstream care for people from some cultures and religions can have a significant impact on their health outcomes and experiences (Mukherjee et al., 2021). For example, having to avoid traditional foods may lead to health deficiencies; avoiding conversations about the disease or long-haul travel to see family may lead to feelings of isolation and inadequacy. However, you as a health professional should not make assumptions about the way your patient’s cultural background or ethnicity may affect their experience. Instead, look to the evidence to find out and understand what those impacts are.
Healthcare professionals should consider:
- Is cultural competence integrated into care of IBD patients?
- Does the patient’s family or community understand the disease or need education?
- Do the common concerns that impact the general IBD population significantly increase in a culturally diverse patient? Has the team created opportunities to explore this further?
- Has IBD information been provided in the patient’s language?
- Have self-management strategies been co-created with the patient in a way that makes it possible for them to enjoy their cultural and religious traditions?
- Has the team invited an open and collaborative relationship with the patient and their community so all understand when to ask questions, seek advice and escalate care?
Thinking Point
Given that Medya is from Iraq, what other services could you access to assist her with understanding her treatment while ensuring that her cultural needs are also met?
Case study 1 summary
Medya is entering a new chapter of her life with a new diagnosis of inflammatory bowel disease. The role of the nurse in supporting refugee patients is important and complex. As well as learning how to manage her symptoms and physical health, Medya must learn how to monitor and promote her mental wellbeing. Medya’s cultural and religious needs should be addressed by an interdisciplinary team to promote a collaborative relationship and positive experience for her and her family.
References
Alatab, S., Sepanlou, S. G., Ikuta, K., Vahedi, H., Bisignano, C., Safiri, S., . . . Naghavi, M. (2020). The global, regional, and national burden of inflammatory bowel disease in 195 countries and territories, 1990-2017: A systematic analysis for the Global Burden of Disease Study 2017. The Lancet Gastroenterology & Hepatology, 5(1), 17-30. https://doi.org/10.1016/S2468-1253(19)30333-4
Busingye, D., Pollack, A., & Chidwick, K. (2021). Prevalence of inflammatory bowel disease in the Australian general practice population: A cross-sectional study. PLoS One, 16(5), e0252458. https://doi.org/10.1371/journal.pone.0252458
Byrne, G., Rosenfeld, G., Leung, Y., Qian, H., Raudzus, J., Nunez, C., & Bressler, B. (2017). Prevalence of anxiety and depression in patients with inflammatory bowel disease. Canadian Journal of Gastroenterology & Hepatology, 2017, Article 6496727. https://doi.org/10.1155/2017/6496727
Gralnek, I. M., Stanley, A. J., Morris, A. J., Camus, M., Lau, J., Lanas, A., Laursen, S. B., Radaelli, F., Papanikolaou, I. S., Cúrdia Gonçalves, T., Dinis-Ribeiro, M., Awadie, H., Braun, G., de Groot, N., Udd, M., Sanchez-Yague, A., Neeman, Z., & van Hooft, J. E. (2021). Endoscopic diagnosis and management of nonvariceal upper gastrointestinal hemorrhage (NVUGIH): European Society of Gastrointestinal Endoscopy (ESGE) guideline – update 2021. Endoscopy, 53(3), 300–332. https://doi.org/10.1055/a-1369-5274
Kok, K. B., Byrne, P., Ibarra, A. R., Martin, P., & Rampton, D. S. (2023). Understanding and managing psychological disorders in patients with inflammatory bowel disease: A practical guide. Frontline Gastroenterol, 14(1), 78-86. https://doi.org/10.1136/flgastro-2022-102094
Mukherjee, S., Beresford, B., Atkin, K., & Sebastian, S. (2021). The need for culturally competent care within gastroenterology services: Evidence from research with adults of South Asian origin living with inflammatory bowel disease. Journal of Crohn’s and Colitis, 15(1), 14-23. https://doi.org/10.1093/ecco-jcc/jjaa117
Prasad, S. S., Potter, M., Keely, S., Talley, N. J., Walker, M. M., & Kairuz, T. (2020). Roles of healthcare professionals in the management of chronic gastrointestinal diseases with a focus on primary care: A systematic review. JGH Open, 4(2), 221-229. https://doi.org/10.1002/jgh3.12235
Szigethy, E., Murphy, S. M., Ehrlich, O. G., Engel-Nitz, N. M., Heller, C. A., Henrichsen, K., . . . Allen, J. I. (2021). Mental health costs of inflammatory bowel diseases. Inflammatory Bowel Diseases, 27(1), 40-48. https://doi.org/10.1093/ibd/izaa030