Teenagers, social support, and sickle cell disease

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5 Sept 2022
20

Today, I'd want to discuss the effects that sickle cell disease has on kids and teenagers. The interval between childhood and adulthood is known as adolescence. Adolescent children experience a variety of changes. These transitions, in addition to the challenging nature of having a chronic illness, must be experienced by adolescents. Sickle cell disease is a chronic illness since it is a long-term ailment, and if the patient is sick frequently, it can put a lot of strain on the family's emotional, financial, and physical well-being. Multiple facets of a person's life might be affected by sickle cell disease. Relationships, loneliness, education, social upheaval, bereavement, depression, and social integration are only a few examples.

Compared to their counterparts who do not have sickle cell, adolescents who live with sickle cell frequently endure poor bone growth. Additionally, they have delayed puberty. Increased self-consciousness and dissatisfaction with their looks may be the outcome of these factors. These can also lead to peer shame or mockery, and other sickle cell symptoms like jaundice, which can affect interpersonal interactions and cause low self-esteem, can also do the same. Slower physical development and getting tired more quickly than their classmates may also prevent them from participating in sports, which would further limit their confidence and competence and cause them to retreat from their peers.

Due to their frequent hospital stays and isolation from peers, children with sickle cell disease frequently struggle to make friends and adjust to typical developmental stages. In order to normalize and move through developmental phases as well as adjust to living with a chronic disease, children and adolescents in hospitals require a lot of social support and contact with family members and peers. It has been demonstrated that parental involvement in the life of a kid with sickle cell disease results in improved outcomes for the child's mental and physical health.

Most families suffer the same social challenges when it comes to children being hospitalised. Given that sickle cell anemia affects children and teenagers differently than their healthy peers, the disease would want for them to withdraw from their friends. Young people with sickle cell disease want to conceal the condition to prevent ridicule or bullying, and many would prefer go through social isolation than disclose they have the disease.

Along with looking at the concept of social support from other sickle cell peers, it's important to consider the support and communication within families and siblings. In a research, parents visited four soldiers in the hospital on a daily basis for varied lengths of time depending on their age and parenting responsibilities. But during their hospital stays, each soldier remarked about how much they missed their siblings, and these kids gushed about how much they loved it when their siblings came to visit. Frequent hospital stays can be quite stressful for the family as well as interfere with normal social connections.

The kids talked about how their feelings of melancholy and worry about being sick prevented them from taking part in activities with other kids. The kids' quality of life was diminished because they couldn't participate in physical education classes or sports like their peers could. The most frequent reason children with sickle cell disease seek medical attention, as mentioned above, is because of periodic painful crises. Abdomen, chest, back, and extremities are the most frequently affected areas by painful crises. Crisis pain is psychologically morbid and debilitating due to both its unpredictability and severity.
Adolescence is a period of rapid transformation and upheaval. It is a significant and rewarding experience to assist patients with sickle cell disease in making a seamless transition from the pediatric to adult health care setting.


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