Whether in the case of food allergy, asthma, cancer, or other chronic diseases, children need help to cope with the situation in the healthiest possible way.
Parents, too, may need help processing a child’s condition and their own feelings about it.
Chronic diseases in children, what do the researchers say?
Stress levels can rise when caring for a sick child. A recent study found that mothers and fathers experienced similar stressors when caring for a sick child, but mothers experienced higher levels of stress, perhaps because they are usually the child’s primary caregiver. The same study showed that a lack of control can be the most stressful aspect of caregiving – parents may feel a loss of control when, for example, they cannot help their child feel better or are uncertain about the future prognosis.
What is the best way to manage stress?
It is very important to manage the stress of both parents and children. A study of children with type 1 diabetes found that high levels of parental distress were associated with higher stress and depressive symptoms in their children. Children whose parents had high levels of stress also had poorer disease management.
In addition, intense overprotection, as well as permissiveness, are capable of greatly changing the child’s psyche, thoughts, and lifestyle, which can affect the course of the disease.
What can parents do to help their child with a chronic disease?
Smooth communication with the child about his/ her feelings and thoughts is very important. For example, children with cancer may find that they are unable to do things they used to do. Finding new activities compatible with each individual’s capabilities is equally helpful.
Children can also feel isolated at school. Parents and teachers should help children set up a short script so they can explain their situation to friends or classmates who ask questions or stare.
Also, if there are siblings, it is good for them to become part of the group and participate in the care of their brother or sister.
Asking for help from experts
Even when things are going well, it’s helpful to establish a relationship with a psychologist early on. If new complications arise later – when a child moves into adolescence, for example – you’ll have a familiar resource to turn to.
Also, the creation of a support network in which other parents participate is an outlet that leads to the release, acceptance, and management of the emotional burden.
The psychopathology of the child
For young children, it is quite helpful to tell stories about illnesses so that they see other children going through the same thing. Additionally, practicing medical procedures on a doll can make children feel more in control. Also, rewards like stickers for following a treatment plan can help.
Older children understand more about what is going on with their health, so they may worry more. They may also want more control over their treatment. It’s a good idea for parents to involve the teen as much as possible in their health decisions.
Certainly, an illness can make children feel very lonely. Abstaining from school and friends is capable of disrupting normal emotional development.
Children may need to see a therapist if they worry a lot or avoid things that remind them of their disease. Acting out at school or having lots of headaches and stomachaches unrelated to their disease can also be signs that they need support. Psychotherapy and family therapy can all be helpful.
Communicate with your child
Open and honest communication is key to helping your child cope with a chronic illness. It’s important to talk to your child about their illness in an age-appropriate way, using language they can understand. Children may feel scared, confused, or angry about their illness, and it is essential to validate their feelings and provide a safe space to express themselves.
Parents can also encourage their child to ask questions and participate in their own care. This can help the child feel empowered and in control of their health. Communication can also help parents identify when their child may be struggling emotionally or physically, allowing them to provide additional, more supportive help.
Create a routine
Chronic diseases can disrupt the daily routine, causing stress and uncertainty for both the child and the family. Establishing a routine can help provide structure and a sense of normalcy for the child. This can include regular mealtimes, bedtime routines and scheduling time for play and rest.
Take care of yourself
Caring for a child with a chronic illness can be emotionally and physically draining. It is important for parents to take care of themselves, both for their own well-being and to provide the best possible care for their child.
Encourage physical activity
Physical activity is important for both physical and emotional health, even for children with chronic diseases. Although you may need to modify activities or make adjustments, encouraging physical activity can help improve mood, reduce stress, and improve overall health.
Parents can work with their child’s doctors to determine safe and appropriate activities for their child. This may include physical therapy or modified sports activities. It’s important to listen to your child’s needs and abilities and make the adjustments needed to ensure they feel comfortable and safe.
Overall, the participation in sports activities of children with chronic illnesses can have profound physical, psychological, social, and educational benefits. It not only improves their immediate health and well-being but also empowers them to take control of their condition, fosters a sense of inclusion, and enhances their overall quality of life.
The main goal of the „KTM KidsTUMove goes Europe – cordially fit“ project is to increase the participation of children with chronic diseases and post-traumatic stress disorders in sports!
Through the provision of different sports activities, programmes and general health information as well as the development of an educational Handbook for coaches and trainers, the target group of children with health impairments as well as their parents will be encouraged to break down their own barriers in order to take part in sporting activities.
References
Norberg, A.L., Lindblad, F., and Borman, K.K. (2005). “Coping strategies in parents of children with cancer.” Social Science & Medicine,60(5): 965-975.
Rodriguez, E.M., Dunn, M.J., Zuckerman, T., Vannatta, K., Gerhardt, C.A., and Compas, B.E. (2012). “Cancer-related sources of stress for children with cancer and their parents.” Journal of Pediatric Psychology, 37 (2): 185-197.
Whittemore, R., Jaser, S., Chao, A., Jang, M., and Grey, M. “Psychological experience of parents of children with type 1 diabetes: A systematic mixed-studies review.” The Diabetes Educator, 38 (4): 562-579.
Rodriguez, E.M., Dunn, M.J., Zuckerman, T., Vannatta, K., Gerhardt, C.A., and Compas, B.E. (2012). “Cancer-related sources of stress for children with cancer and their parents.” Journal of Pediatric Psychology, 37 (2): 185-197.
Chronic illness, disability, and mental and social well-being: findings of the Ontario Child Health Study. Cadman D, Boyle M, Szatmari P, Offord DR. Pediatrics. 1987 May;79(5):805-13.
Concepts of illness and perception of control in healthy children and in children with chronic illnesses. Shagena MM, Sandler HK, Perrin EC. J Dev Behav Pediatr. 1988 Oct;9(5):252-6.
In the eyes of the beholder: family and maternal influences on perceptions of adjustment of children with a chronic illness. Perrin EC, Ayoub CC, Willett JB. J Dev Behav Pediatr. 1993 Apr;14(2):94-105.
Psychological adaptation of siblings of chronically ill children: research and practice implications. Drotar D, Crawford P. J Dev Behav Pediatr. 1985 Dec;6(6):355-62.
Parent Toolkit: Parenting a Child With a Chronic Illness. https://www.childrenscolorado.org/conditions–and–advice/parenting/parenting–articles/child–with–chronic–illness/
Psychological adjustment in young children with chronic medical conditions. https://pubmed.ncbi.nlm.nih.gov/2253993/
Tips for Parents Helping Their Child Cope with Chronic Illnesses. https://www.nationaljewish.org/conditions/health–information/kids–health/tips–for–parents–helping–their–child–cope–with–chronic–illnesses
Coping When Your Child Has A Diagnosis Of A Chronic Illness Or Disability. https://www.kidshealth.org.nz/coping–when–your–child–has–diagnosis–chronic–illness–or–disability
HOW PARENTS CAN HELP THEIR CHILD COPE WITH A CHRONIC ILLNESS. https://www.nfmidwest.org/wp–content/uploads/2021/04/coping–with–a–chronic–illness.pdf
Chronic illness – coping at school. https://www.betterhealth.vic.gov.au/health/healthyliving/chronic–illness–coping–at–school
