Siblings – Life with a Chronic Condition
Life for a person with a chronic condition can undoubtedly create unpredictable and emotionally challenging situations, family life with a chronic condition is no different!! Plan B’s become paramount to everyday life, the ability to be adaptable, being prepared and educated, all help to navigate the challenges that may arise. When armed with these tools we can adapt to our ‘new normal’ following a diagnosis of a chronic condition.
A child with a chronic illness and their parents can experience stressful and emotional circumstances, which in turn means the family as a whole – including any siblings also experience those situations to varying degrees. Siblings of children with a chronic condition may have unique life experiences – some good and some challenging. Plan B’s, being left in the care of relatives, another child seemingly spending more time on their own with a parent, all of these situations, can be difficult for a sibling of a child with a chronic condition to accept, particularly if they do not fully understand why.
Knowledge is power, but it is also clarity and understanding! As an adult or a child, when we don’t fully understand a situation or we are confused about why a particular situation is happening we may become fearful, angry and may jump to erroneous conclusions as to why it is happening.
Research has shown that communication, involvement and education are the most important factors which can help to reduce any negative impacts that may affect the siblings of a child with a chronic condition.
Just like explaining to your child with a chronic condition in an age appropriate way what their condition is, what their treatment is and how it affects them and their family, it is equally important to explain and open the channels of communication for the sibling of a child with a chronic condition. This can help, you as a parent, understand what the child feels and how the situation may be affecting their lives. It also gives the child the opportunity to ask any questions they may have which can alleviate any fears they may have.
However big or small the impact, there will inevitably be some level of impact on the siblings of a child with a chronic condition. It is important for both the patient and the sibling to feel as though this condition is a normal part of their family life. Involving the siblings in summer camps, education and treatment, where possible and appropriate, will enable the siblings of the child to positively associate and understand the condition and its impact on the family.
References
Deavin, A., Greasley, P., & Dixon, C. (2018). Children’s Perspectives on Living With a Sibling With a Chronic Illness. Pediatrics, 142(2), e20174151.
Gan, L. L., Lum, A., Wakefield, C. E., Nandakumar, B., & Fardell, J. E. (2017). School experiences of siblings of children with chronic illness: A systematic literature review. Journal of pediatric nursing, 33, 23-32.
Havermans, T., Croock, I. D., Vercruysse, T., Goethals, E., & Diest, I. V. (2015). Belgian siblings of children with a chronic illness: Is their quality of life different from their peers?. Journal of Child Health Care, 19(2), 154-166.
Hayes, V. E. (1997). Families and children’s chronic conditions: Knowledge development and methodological considerations. Research and Theory for Nursing Practice, 11(4), 259.
Incledon, E., Williams, L., Hazell, T., Heard, T. R., Flowers, A., & Hiscock, H. (2015). A review of factors associated with mental health in siblings of children with chronic illness. Journal of Child Health Care, 19(2), 182-194.
