lean on me the power of support for families living with pediatric ibd

Caring for a child with inflammatory bowel disease (IBD) can be challenging. Upon diagnosis, your family is suddenly thrust into a world of medical appointments, treatment plans, and the constant uncertainty of navigating a chronic illness. In current research, there is a heavy focus on the many ways in which an IBD diagnosis impacts a pediatric patient. There are studies demonstrating IBD's potential impact on the patient's body, emotional and mental well-being, personal relationships and friendships, education, hobbies and activities, exercise, and a host of other facets of a patient's life. One area that is perhaps under-researched at this time is the impact that a child's IBD diagnosis has on the family. A study published in Frontline Gastroenterology supports this hypothesis, reporting that “ [IBD] has a major impact on different aspects of life…, but functioning in the home environment is under-reported in literature” (Paulides, et al., 2022). This is unfortunate because research has demonstrated that a flourishing family life can enhance an IBD patient's self-efficacy, increase positive coping strategies, and reduce negative psychological states (Wu et al., 2022). The same study reports that a healthy home environment also has a potential impact on optimizing prognosis for a child with IBD (Wu et al., 2022). This is incredible! A healthy family dynamic is not only a benefit to the entire family, but is also a protective factor for the mental and physical health status of the pediatric IBD patient. We want strong children. We want strong families. We know that a child's IBD diagnosis has the potential to impact the family dynamic. How do we ensure a strong, nourishing home life? There are several ways to foster a healthy family dynamic within the home of a pediatric IBD patient, but this blog post will explore just one of those ways: building a strong family support network. We will discuss ways that you can start building your family's own unique, strong support system, as well as the vast potential benefits that having family support can bring to your home.

Potential Ways to Build a Strong Family Support Network

Listed below are several ways that you can start building your family's own unique support system. You might notice the most benefit to your family when a variety of different suggestions are utilized. If you can think of any other ways to build a strong family support network, please feel free to mention them in the comments!

Join local in-person support groups: Joining a local, in-person support group is one of the best ways to build a strong, healthy support network for your family. You can research local support groups that are specifically tailored to families affected by pediatric IBD. If you are having trouble locating this type of support group, broaden your search criteria to include support groups for families affected by chronic disease. If your child is older and is comfortable with attending a support group alone, you may also consider searching for support groups that cater to the individual diagnosed with IBD or chronic disease. Although this type of support group does not necessarily focus specifically on healthy family dynamics and building family support systems, there may still be opportunities to connect with other families and build community. For instance, your child may develop a friendship with another child within the group, leading to instances in which your families meet. You may also be able to connect with a parent during a pick-up or drop-off time. No matter the type of local support group you have in your area, there will be some windows of opportunity to connect with other families and build a strong support system! Often times, the trouble is taking the first step in attending a group. The potential benefits of joining a group, however, far outweigh the potential risks in current evidence-based literature. The relationships formed within a local support group have the potential to directly impact your daily life. Imagine a group of individuals you can turn to for questions, advice, or emotional support. Imagine families who are willing and able to drop meals off to your home when your child is experiencing a medical crisis. Imagine spending quality time with families who just “get it.” Imagine your children who do not have an IBD diagnosis having the ability to socialize with other siblings of children with IBD. The benefits to the entire family dynamic are endless. If you are local (Worcester County, MA), you can click the link at the bottom of this post to learn more about IBD Connect's In-Person Family Support Group. We also have another In-Person Family Support Group that will be launching this month in Bangor, Maine!

Utilize online communities or virtual support groups: Although the benefits of joining a local, in-person support group are vast, depending on your location, this may be incredibly challenging. If this is the situation you find your family in, consider utilizing an online community or attending a virtual support group. Websites, online forums, and social media groups provide platforms for sharing experiences, asking questions, receiving support, and offering encouragement from the comfort of your own home. Similarly, virtual support groups can also provide a safe-space to express your thoughts, with the added benefit of “face-to-face” communication. You may be surprised at the type of support you can glean from (and offer to) an online community! IBD Connect has several virtual support groups, a virtual family support group, a virtual caregiver's support group, and a virtual young adult (18-30) support group. Click the link at the bottom of this post to learn more!

Attend pediatric IBD events, workshops, or educational webinars: Depending on your location, you may have the opportunity to participate in pediatric IBD-related events, workshops, or conferences in your area. These gatherings offer opportunities to connect with other families, healthcare professionals, and experts in the field, fostering supportive relationships and providing access to valuable resources. If these types of workshops are not available in your location, search for free online educational webinars, such as the resources provided by the The more you engage in the IBD community, the more connections you will find!

Choose the right healthcare providers: A strong support network for your family includes healthcare providers that are a good fit for your family. When choosing a provider for your child, you may want to consider a provider's communication style, treatment approach, education, board certification, and hospital affiliation, in addition to patient reviews and feedback. Try to build a strong relationship with all the members of your child's healthcare team, including your child's primary care provider, pediatric gastroenterologist, nurses, dietitians, mental health professionals, etc. Establishing open communication and trust with your child's healthcare team can provide invaluable support to not only your child, but your family as a whole.

Reach out to schools and/or community: Support for your family can come in many different ways. You may decide to educate your child's teachers, school personnel, and/or classmates about pediatric IBD to foster understanding and support within the school community. There are many different support systems that your child's place of education can initiate for your child. For instance, if your child is attending a public school, a 504 plan can provide an avenue for certain accommodations to be made to ensure that your child is receiving the same quality of education as other students. For more information about what a 504 plan is and how to initiate one for your child, you can visit the link at the bottom of the page to view a previous blog post on this topic. You may also consider contacting the necessary individuals within your school or community setting to form your own school or community support group or network for families affected by chronic illnesses like pediatric IBD.

Share your story: If your family is comfortable with this, you may consider sharing your family's journey with pediatric IBD openly and honestly with friends, family members, or even online. By raising awareness and destigmatizing the condition, you may find additional sources of support or understanding within your social circle. You may choose to involve local extended family members or friends in your child's care and treatment journey by keeping them informed about pediatric IBD and encouraging their support and involvement. These individuals can play meaningful roles in providing emotional support and practical assistance, but if they are unaware of the ways in which your family is struggling, it may be difficult for them to provide this tangible help.

Seek professional counseling or therapy: If you feel as though this is necessary or may be beneficial to your family, you may also consider seeking professional family counseling or therapy to address emotional challenges, communication issues, and stress management related to pediatric IBD. A qualified therapist can provide support and guidance tailored to your family's unique needs and circumstances. As mentioned previously, support can come in several different ways! You may be surprised with the type of support you can receive from this type of care.

Participate in research studies: This one may seem a little unusual, but you may decide to participate in pediatric IBD research studies or clinical trials as a family. Obviously, this is a decision that every family must make on their own, taking into consideration potential risks and benefits to involvement in studies on a case-by-case basis. If this is something that your family chooses to participate in, your family may gain access to cutting-edge treatments and interventions and become part of a larger community dedicated to advancing the understanding and management of pediatric IBD.

Potential Benefits of a Strong Support Network

Emotional Support: A strong family support network is of enormous benefit to a family's emotional health. A support group, for instance, provides a safe and empathetic space for parents and caregivers to share experiences, fears, and frustrations related to pediatric IBD. A family support group also offers the opportunity for children with IBD, as well as their siblings, to connect with one another and offer validation, comfort, and emotional support. Additionally, if your child is going through a challenging time medically, family and friends can offer emotional support in the form of meal deliveries, transportation assistance, or help with household chores to alleviate some of the burdens on the family. A strong family support system can provide emotional support to a family in a number of different ways!

Information and Education: Families with pediatric IBD can benefit from access to the latest accurate information and educational resources about the condition. A strong family support system encompassing support groups, online forums, educational webinars, and trusted healthcare providers can provide valuable insights, tips, and resources for the management of pediatric IBD. The bigger your support system is, the more access you will have to easily accessible and potentially beneficial information about pediatric IBD!

Practical Advice or Tips: This potential benefit to a strong family support system is very closely related to the former benefit discussed. When your family has a strong network of other families affected by IBD, it becomes easier to tackle the day-to-day hurdles that come with the condition. While educating yourself on topics such as the various medication classes for IBD treatment or the latest research developments is undoubtedly valuable, gaining insights from other families can be equally beneficial. Questions like "How did you manage to help your child swallow pills effectively?" or "What steps did you take to establish a 504 plan for your child?" or even "How do you navigate dining out with a specific dietary restriction?" can be addressed more comprehensively with the collective wisdom and experiences of fellow families in similar situations.

Reduced Feelings of Isolation: Living with pediatric IBD can be isolating for each of the members of your family if your family does not have a strong support network in place. Participating in family support groups, educational webinars, or research studies can help alleviate feelings of isolation by connecting with other families who understand and empathize with your situation. Even if you aren't connecting with other pediatric IBD families on a regular basis, connecting with and gaining support from family members or friends who are well-informed of your situation can still help to reduce feelings of isolation!

Increased Coping Skills: If your family has a strong support network, you may find that overtime, whether through an in-person or virtual support group, family therapy, or some other avenue, your family is learning to manage the stress and uncertainty of pediatric IBD more effectively. Learning from others and receiving encouragement on a regular basis can build resilience and strengthen coping skills over time!

Advocacy Opportunities: Having a strong family support network can provide you and your family with opportunities for advocacy. Many local support groups host events or fundraisers that can serve as a platform for advocacy and collective action to raise awareness about pediatric IBD, advocate for improved healthcare services, and support research efforts to find better treatments and ultimately a cure for IBD. Other opportunities for advocacy arise when discussing your child's pediatric IBD with your child's school or community. As a parent or guardian of a child with pediatric IBD, you have opportunities to model advocacy to your children in your attempts to build a strong family support network.

Sense of Empowerment: Often times, a strong family support network can foster a sense of empowerment for families affected by pediatric IBD. Knowing that your family is not alone in your journey and that there is a community of support behind you can provide your family with the strength and motivation to face the challenges of pediatric IBD with resilience and hope. Often times, a sense of empowerment can inspire families to help other, less-experienced families affected by pediatric IBD. That is the beauty of community involvement and strong support networks!

Going forward, more research should be conducted on the many ways that a child's IBD diagnosis impacts functioning in the home environment. However, we do understand that there are long-term benefits to fostering a healthy family dynamic within a home affected by pediatric IBD. Remember, a functioning family can have a potential positive impact on the mental and physical well-being of your IBD Warrior, as well as vast benefits for the family as a whole (Wu et al., 2022). Creating a strong support network for your family is an incredibly beneficial way to encourage healthy family dynamics within your home, and there are several different ways you can go about doing so. As we wrap up, please take 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 or healthcare team. Additionally, please note that this page cannot be a substitution or a replacement for the advice of a licensed therapist. If you feel as though your family may need professional support, please seek out the counsel of a licensed professional that specializes in relationships and/or family dynamics. Remember, if you would like to learn more about IBD Connect's in-person or virtual support groups, you can use the link at the bottom of this post to gather more information. To attend a group meeting, keep an eye on our website or social media platforms for in-person meeting details and Zoom registration links. You can also feel free to contact either myself or another member of the IBD Connect team via email or website for any questions or concerns. As always, stay strong IBD Warrior families!

References

Paulides, E., Cornelissen, D., de Vries, A. C., & van der Woude, C. J. (2021). Inflammatory bowel disease negatively impacts household and family life. Frontline Gastroenterology, 13(5), 402–408. Wu, Q., Zhu, P., Liu, X., Chen, C., Ji, Q., & Gu, Q. (2022). The impact of family function on mental health status in patient with inflammatory bowel disease: The mediating role of self-esteem. Frontiers in Psychiatry, 13.