compassionate care how nurses serve as pillars for ibd patients

Your child has been diagnosed with irritable bowel disease (IBD), and you have been thrust into the chaotic world of healthcare. You've met with pediatricians, pediatric gastroenterologists, surgeons, medical receptionists, registered dieticians, and many other professional healthcare workers. In each medical facility that you've visited with your child, there always seems to be a nurse. You may have wondered about the role of the registered nurse. What exactly do nurses do? How is a nurse different from a certified nurse assistant or medical assistant? Why is there always a nurse around? While the roles and responsibilities of many healthcare professionals, including surgeons or registered dieticians for example, are generally well understood, the role of a nurse is sometimes underestimated or overlooked. However, the support and care provided by nurses is essential and plays a significant role in the management and treatment of children with IBD. In this post, we will discuss the various medical facilities where you and your child with IBD may encounter a registered nurse, as well as the roles and responsibilities of the nurse in each of these settings. After reading this page, it is my hope that you gain a more thorough understanding of the significant contribution that nurses make to patient and family-centered care. Embracing a good nurse's support can lead to a more empowered and informed experience for you and your child with IBD!

Before we begin, please note that this page is not intended to be a substitute for a professional medical opinion. For more detailed information regarding IBD or if you have questions pertaining to your child's individual treatment plan, please seek out the professional medical advice of your child's doctor. Additionally, please note that for the purposes of this blog, I will be writing largely from my personal experiences working as a registered nurse. While I have worked in a variety of different settings, I have not worked in each type of facility that will be discussed in this post. If you have any questions about the information that is covered, feel free to email me or check out the links at the bottom of the page to learn more about how to become involved with an IBD Connect support group. Now, let's dive into the content!

What is a Registered Nurse?

Modern-day nursing looks very different from its beginnings in the mid-19th century, where nurses were often viewed as assistants to doctors. Today, nursing is a professional career and one that comes with its own education, skillset, and opportunities for specializations and career advancement. A registered nurse undergoes comprehensive education, often earning a bachelor's degree, before successfully passing a licensure examination to obtain a professional license. Once licensed, nurses can pursue employment in a diverse array of settings, ranging from hospitals and clinics to nursing homes, schools, community centers, patients' homes, and aboard cruise ships, among many others. Based upon their work environment and the needs of their patient demographic, nurses have the option to pursue advanced education, enabling them to specialize in various areas such as pediatrics, geriatrics, mental health, critical care, and more. Moreover, nurses can opt for further degree programs, propelling them into the role of advanced practice registered nurses. Included in this category are nurses who function very similarly to medical doctors, with the ability to diagnose medical conditions and prescribe medications and treatment.

In short, nurses are trained professionals who provide a wide range of services amongst many different settings and patient population. These services can include:

Direct Patient Care: Nurses are responsible for monitoring patients, administering medications, assisting with procedures, and providing emotional support to patients and their families during difficult times.

Health Education: Nurses play a pivotal role in educating patients and the community about various health conditions, preventive care, and overall wellness practices, empowering individuals to make informed decisions about their health.

Care Coordination: Nurses often serve as coordinators, collaborating with physicians, physical therapists, speech therapists, dieticians, and other healthcare professionals to ensure that patients receive comprehensive and holistic care tailored to their specific needs.

Advocacy: Nurses advocate for their patients, ensuring that their voices are heard and their rights are protected within the healthcare system. They serve as a bridge between patients and other healthcare providers, ensuring that patients' concerns and preferences are addressed.

Where Might You See a Registered Nurse?

Hospitals: Hospitals serve as a crucial setting for IBD patients, especially during acute flare-ups or severe disease exacerbations. Nurses in this environment are often the primary caregivers, responsible for closely monitoring patients' vital signs, administering medications, and providing emotional support during vulnerable moments. In the hospital, your child's nurse will be your go-to point of contact for any questions or concerns you may have. He or she will act as the coordinator amongst the different healthcare disciplines. If you would like to speak to your child's doctor, your child's nurse will be able to ask the doctor to stop by your room. If you would like to speak with a registered dietician, your child's nurse is the person to ask! Nurses in the hospital setting collaborate closely with physicians and other healthcare professionals assigned to your child's medical team, ensuring that your child receives timely and effective treatment and care. Nurses act as patient and family member advocates, communicating patients' needs and parental concerns to the medical team, thereby facilitating comprehensive and patient/family-centered care. To help with the responsibilities that the nurse has for each of her patients, sometimes a certified nursing assistant is able to help with patient vital signs, meal delivery, bathing, and other tasks that do not require advanced medical knowledge. This helps explains why there always seems to be several people in and out of your child's room!

Clinics and Outpatient Centers: You will encounter nurses with your child's primary care doctor, gastroenterologist's office, outpatient colonoscopy settings, and outpatient infusion settings. In all of these outpatient settings, nurses can educate patients about disease management, including medication adherence, dietary modifications, and the importance of regular follow-ups. They also provide emotional support and address patient and parental concerns, fostering a sense of trust and understanding that is vital for effective disease management. If your child needs an outpatient colonoscopy, a nurse will be the one to place the IV in your child's arm or draw bloodwork! If your child is going to an infusion clinic for IV medication administration, a nurse is the one to start the IV medication and assess for medication reactions. Sometimes, outpatient settings will utilize medical assistants. Medical assistants are able to take vital signs, measure your child's growth, and ask you or your child some basic questions to collect information. Often times, medical assistants are confused for nurses in these settings!

School: If your child is attending school, chances are you are familiar with their school nurse. For children managing IBD, the school environment can present unique challenges that require specialized care and support. In this setting, the school nurse serves as a dedicated ally, playing a pivotal role in ensuring the well-being and academic success of your child. The school nurse can help to manage and administer any necessary medications during the school day, take action and provide medical intervention in an emergency situation, and assist in creating and implementing a 504 plan or a similar equivalent.

Home Healthcare: Potentially the most common reason for a home healthcare nurse for a pediatric IBD patient is IV medication administration. Home healthcare nurses provide this essential service in the comfort of your family's home. Additionally, home healthcare nurses can help educate patients and their families on how to manage symptoms effectively, emphasizing the significance of a healthy lifestyle, stress management, and regular exercise in controlling the disease. Home healthcare nurses serve as a dependable source of guidance and support, empowering your child to maintain their independence and quality of life.

Community Health Centers: Nurses in community health centers focus on promoting overall wellness and preventive care for IBD patients within the local community. They organize health screenings to detect early signs of disease exacerbation, offer counseling on lifestyle modifications to alleviate symptoms, and provide guidance on nutritional choices that can help alleviate discomfort associated with IBD. Furthermore, these nurses play a vital role in organizing support groups and educational workshops, creating a sense of community and understanding among patients coping with similar challenges. They collaborate with local organizations and advocacy groups to raise awareness about IBD, debunk common misconceptions, and ensure that patients and family members have access to the necessary resources and support networks.

Telehealth Services: In the era of digital healthcare, nurses are increasingly utilizing telehealth services to provide remote care and support to IBD patients. Through virtual consultations, nurses can assess symptoms, provide education on disease management, and offer guidance on medication adjustments. They use telemonitoring devices to track patients' vital signs and disease progression, allowing for early intervention and prevention of complications. Moreover, nurses utilize telehealth platforms to conduct follow-up appointments, discuss treatment plans, and address any concerns or questions that patients may have. Telehealth services not only enhance the accessibility of care for IBD patients, particularly those residing in remote or underserved areas, but also foster a continuous connection between patients and healthcare providers, promoting a sense of reassurance and support.

Wound, Ostomy, and Continence Nurses

As mentioned previously, registered nurses are able to pursue additional educational opportunities and specializations depending on the setting in which they work, the patient population they are working with, and their clinical interests. One such certification is a wound, ostomy, and continence certification. Most major hospitals have at least one “wound nurse,” a nurse that possess specialized knowledge and skills in managing and caring for several different types of wounds. These nurses also have the ability to do additional education in continence-related skin issues and ostomy application, management, and complications. If your child has an ostomy, chances are you've worked with a few of these nurses! Wound nurses play a pivotal role in educating pediatric IBD patients and their family members about proper ostomy bag maintenance, including changing the bag, ensuring a proper seal, and maintaining skin integrity around the stoma. They provide patients and caregivers with in-depth training on how to handle and empty the ostomy bag, as well as guidance on selecting appropriate ostomy supplies that best suit the patient's individual needs and lifestyle. If any skin-related complications related to your child's stoma arise, wound nurses are able to assess the area and implement proper protocols for treatment. Although many wound care nurses are found in the hospital, you can also encounter wound care nurses in outpatient and home settings.

Advanced Practice Registered Nurses

There are several different types of advanced practice registered nurses, or APRNs, including: family nurse practitioners, acute care nurse practitioners, certified nurse midwives, and certified nurse anesthetist amongst others. These nurses have either a Master's or Doctorate Degree in their specialty, and have many of the same responsibilities as medical doctor's or physicians assistants in their respective field. You probably have already encountered a few APRNs! A certified nurse anesthetist may be the provider ordering sedative medication for your child's colonoscopy. An acute care nurse practitioner specializing in gastroenterology may be ordering your child medications in the hospital. A family nurse practitioner could be your child's primary care provider.

Hopefully, the information on this page serves to give you a more thorough understanding of the different roles and responsibilities that registered nurses may have in the care and management of IBD. A nurse can work in various medical settings and within several different specialties. The profession of nursing embodies adaptability, compassion, and a relentless commitment to serving others. Nurses are not only caregivers but also advocates, educators, and innovators who continuously strive to make a positive impact on the lives of individuals and communities. Their resilience, flexibility, and dedication solidify their position as the backbone of the healthcare system, fostering a culture of healing, empathy, and hope that transcends the boundaries of medicine and touches the lives of all those they serve. Nurses, as are all other members of your child's heatlhcare team, are incredibly important in the management and care of those with IBD!

As we wrap up, if you would like more information or support, feel free to email me or contact another member of the IBD Connect team through our main website. My email address is linked below. If you are interested in connecting with a support group, feel free to click the link below for more information! Stay strong IBD Warrior families and if you have a chance, thank a nurse!