Childhood ependymoma treatments result in causing various side effects and alterations to the child’s body. The results of treatment show variations among the children. Sometimes the same treatment strategy used for a particular disease condition evolves with different effects. Hence, it is difficult to predict the outcome and impact of a specific treatment. Therefore, coping-up strategies are adopted to mitigate the treatment’s side effects. Open communication with the expert regarding new signs or symptoms experienced by the patients helps plan ways to effectively manage and relieve these symptoms and side effects. The parents can seek professional therapies for mitigating the adverse emotional impacts on their children during childhood ependymoma treatment. General physical side effects of each treatment option for early-stage and locally advanced childhood ependymoma are addressed by adopting supportive or palliative care provided by the healthcare team. Children and their parents are motivated to communicate with the medical team about their financial concerns. Several services help patients manage such a group of children in treating childhood ependymoma. Caregivers play an essential role in caring for a person with children’s ependymoma. Effective communication of the patient with the healthcare team is maintained regarding the side effects.
Coping-up Treatment for Childhood Ependymoma
Treating tumors like ependymoma can cause various side effects and alterations to your child’s body. The impacts of treatment vary from person to person. Sometimes the same treatment strategy used for a particular disease condition creates different effects. Hence it is hard to predict the outcome and impact of a specific treatment on people. So, coping with ependymoma treatment side effects is important.
Children and family members can feel anxious about treating a condition like an ependymoma, which is quite natural. Side effects- short term or long term are an inevitable part of such treatments. Parents or guardians must know that managing and relieving symptoms and side effects is integral to the active treatment of ependymoma or any disease condition. The health care team will devise strategies to prevent and cure possible side effects of treatment. And this is what is called supportive or palliative care. It is an essential, inevitable part of treatment, regardless of the tumor type, disease gravity, patient’s age or gender.
Coping with the physical side effects of ependymoma treatment
Ependymoma tumor treatment can cause many physical side effects. It can bring a range of changes to your child’s body. The variations in your child’s physical health are influenced by factors like the type of tumor, its severity, treatment strategy used, the duration of treatment, and the patient’s overall health condition. Parents or guardians should regularly talk with their child’s healthcare team about their child’s feelings and reacting to the treatments. Let them know about any discomfort your child, or you are experiencing. Openly communicate any new signs or symptoms to your doctor as and when your child starts experiencing them. The same applies to the case of any new or a change in existing side effects. Talking with your child’s doctor or healthcare team is vital, as only then they can plan ways to manage and relieve these symptoms and side effects effectively. Treating side effects and signs at the right time prevents the patient’s condition from worsening and helps them lead a comfortable life 1. Please keep track of anybody changes or side effects that your child experiences, as it will help you explain the scenario more effortlessly to the health care team.
Physical side effects can be short term and long-term. Long term side effects or late effects can last for an extended period, even after the active treatment period. Treating these late effects forms a vital part of the survivorship care plan.
Managing the barriers to ependymoma treatment and care
Disease conditions can vary from one person to another. The outcomes of disease diagnosis and treatment can vary. There is no necessity for cases of similar disease conditions to share similar features. Such differences and variations can be called “health disparities.” Many communities and groups are denied quality medical care in the real world. The groups negatively affected include poor people, racial and ethnic minorities, LGBTQ+ or sexual and gender minorities, older adults, adolescent and young adult populations, and people belonging to rural areas etc.
If your child is facing difficulty accessing quality treatment and care, communicate the concern with the doctor or health care team. They will provide or help your child with excellent services.
Coping with social and emotional effects of treatment
Ependymoma and its treatment can take a tremendous toll on your child’s physical and mental well-being. Patients may experience many social and emotional effects after being diagnosed with the tumor. The affected child and the people associated with them will go through emotional, mental turmoil. They will find it tedious to manage emotions like grief, sadness, anger, anxiety. They will find it difficult to calm their mind and manage their stress level. Often people find it difficult to express their feelings and emotions to their close ones. In such cases, the patient and the caregivers can seek professional therapies. Talking with a counsellor or oncology social worker can also help effectively coping with the emotional effects of ependymoma treatment 2.
Managing the costs of cancer care
Cancer treatment can be financially straining. This thought can create a lot of stress and anxiety in the patients and their family members. For many people, finance stands as a hindrance in seeking better treatment.
Some people find that they had a lot of unplanned, extra expenses concerning their ependymoma treatment. And some people are forced to leave the treatment plan halfway because of being unable to manage the enormous cost. And such scenarios can have a very adverse impact on the child’s health and life. Hence, parents or guardians are encouraged to talk about their financial troubles with a concerned health care team member. Today many services and packages can help patients manage their treatment costs without much worry or tension.
Role of Caregivers
Caregivers play a significant role in caring for a person suffering from tumors. Caregivers usually include family and friends who stand by the patients from the beginning, i.e., from ependymoma diagnosis, treatment until post-treatment care (sometimes even after that). In the case of childhood ependymoma, the patient who is a child will be more dependent on their parents or primary caregivers 3.
Caregivers have a range of responsibilities to manage and fulfil daily:
- Giving emotional and physical support to the patients. Encouraging them to do activities. Cheering them up.
- Communicate with the health care team. Caregivers are urged to accompany the patients during appointments and keep track of everything the doctor prescribes and advice.
- Giving food and medicines on time.
- Help patients coping with various symptoms and side effects of ependymoma treatment.
- They should coordinate the child’s appointments with the health care team.
- Managing the transport of the patient for appointments.
- Handling financial aspects like bills and insurance.
- Helping the child with household chores and other daily activities.
Communication with the health care team regarding side effects
Open conversations with the doctor are essential in treating ependymoma tumors or other disease conditions. Parents or guardians are encouraged to ask questions to the health care team or doctor regarding the side effects of treatment. They can ask:
- What are the probable side effects of the ependymoma treatment?
- Explain the short term and long-term side effects?
- When are these side effects likely to happen, and for how long?
- How can we prevent, manage and relieve them?
Be sure to communicate any change that your child is experiencing. Children should care to express even the tiniest effects or feelings that they are experiencing to their caregivers or directly to the healthcare team.
Seek help to create a caregiving plan. Enquire how much care and support (physical, mental) your child will require at home. Parents or guardians should not hesitate to ask anything that comes to mind regarding treatment, side effects or post-treatment care.
- 1.Sposito AMP, Silva-Rodrigues FM, Sparapani V de C, Pfeifer LI, de Lima RAG, Nascimento LC. Coping Strategies Used by Hospitalized Children With Cancer Undergoing Chemotherapy. Journal of Nursing Scholarship. Published online January 31, 2015:143-151. doi:10.1111/jnu.12126
- 2.Desjardins L, Thigpen JC, Kobritz M, et al. Parent reports of children’s working memory, coping, and emotional/behavioral adjustment in pediatric brain tumor patients: A pilot study. Child Neuropsychology. Published online October 2, 2017:959-974. doi:10.1080/09297049.2017.1365828
- 3.Cutillo A, Zimmerman K, Davies S, et al. Coping strategies used by caregivers of children with newly diagnosed brain tumors. Journal of Neurosurgery: Pediatrics. Published online January 2019:30-39. doi:10.3171/2018.7.peds18296