Improving quality of life: Increasing participation in children with cancer

Team Udayavani, Apr 16, 2022, 7:56 AM IST

Representative Image (Source: iStock)

According to the latest world health organization data, cancer is the 9th most common cause of death in children aged 5 to 14 years in India. The proportion of children with childhood cancer was 5.8% in boys and 3.4% in girls. Moreover, 124 cancer cases are reported per million children per year in India. Overall, childhood cancer is more common in men than in women. Leukemia is the most common childhood cancer in India, and about 25% to 40% of children with cancer suffer from leukemia. In India, the mortality rate caused by cancer varies between 14 to 34 deaths per million children per year.

Cancer is a disease in which some of the body’s cells grow uncontrollably and spread to other parts of the body. It can start anywhere in the human body; it comprises trillions of cells. Typically, human cells grow and multiply to form new cells as the body needs them (through cell division). When cells age or are damaged, they die, and new cells take their place. Sometimes this orderly process is broken, and abnormal or damaged cells grow and multiply when they do not want to. These cells can form tumors, which are pellets of tissue. Tumors can be cancer-less or non-cancerous, and they are called harmless.

Let us assume that these tumors spread or invade nearby tissues and travel to distant places in the body to form new tumors. In such a case, they are called malignant tumors. Many cancers form solid tumors, but blood cancers such as leukemia do not. Benign tumors do not spread or invade nearby tissues. Benign tumors usually do not regrow when removed, but cancerous tumors sometimes do so. Non-mild tumors can sometimes be quite large, and some of them can cause severe symptoms and can be fatal, such as non-malignant tumors in the brain.

Types of cancers and intervention

Cancer is unusual in children, but childhood cancer is leukemia, lymphoma, brain cancer, and osteosarcoma (bone cancer). Cancer cells grow uncontrollably, develop unusual sizes and shapes, move beyond their normal boundaries within the body and destroy nearby cells.
There are two main branches of intervention: medical and rehabilitation. These treatments may occur simultaneously.

The type of medical treatment depends on the type of cancer and how advanced it is. These include surgery, chemotherapy, radiation therapy, and bone marrow (stem cell) transplants. In addition to medical methods, there are also rehabilitation treatment modalities, occupational therapy, physiotherapy, and clinical psychology. They are essential for a child to have a good quality of life during cancer treatment and after recovering from cancer.

How does it affect the child?

Childhood cancer interventions affect physical, mental, and social development and limit the child’s involvement in a community such as a school. Children with cancer reported loneliness, confusion, and “different” emotions when separated from their school environment during treatment. Pain and fatigue can also affect daily activities such as eating, dressing, bathing, and toilet. It can become a burden and create problems for the child to manage.

Pain and fatigue can lead to the child staying away from taking part in leisure time or playing games, leading to social isolation. Other children may not be able to relate to the child’s problems. They may refrain from interacting with him, leading to social isolation.

While school participation is only an example of the psychosocial impact of childhood cancer, it is noteworthy because of the social meaning and importance that children attach to it. They may face many problems in their social/community-based activities such as going out with family, attending family functions, going shopping, etc.

Cancer and childhood cancer survivors may experience severe anxiety, inhibited and withdrawn behavior, behavioral problems, excessive physical complaints, severe stress, post-traumatic stress disorder (PTSD), academic difficulties, surrounding frustration, and peer relationship difficulties. Game-based occupational therapy effectively improves the level of pain, anxiety, and fatigue in children with cancer receiving chemotherapy.

How does this affect the parents?

Since these treatments cause long, aggressive, and adverse side effects, they can be emotionally stressful for most parents or caregivers of a child with cancer. Parents are mentally drained by their child’s diagnosis, treatment, side effects, and health condition. Mothers reported significantly higher stress levels.

Since the beginning of its diagnosis, cancer affects the physical, social, psychological, and spiritual dimensions of cancer patients and their caregivers and puts them in a challenging situation. Mothers of children with cancer have a very disturbing experience. They are shocked and want rejection and must live in extreme misery. Their child’s disease affects their family, and as a result, their quality-of-life decreases.

How does occupational therapy help?

Advances in pediatric cancer treatment have contributed to the survival of most children from cancer; however, many have several short-term and long-term side effects. They may have long-term hospital admissions. During and after medical treatment, children’s strength, balance, coordination, good motor abilities, weakness, fatigue, pain, and memory difficulties can lead to inappropriate schooling and reduced play participation compared to their healthy peers.

This is when the occupational therapist steps in to help the child and the family. They focus on independent participation in ADL, play, and leisure during the OT intervention. OT can provide game-based therapy during hospital stays to restore or maintain their strength, reduce their pain, and motivate them more. For example, they may ask parents to get a child’s favorite toy or food or anything that the child has attached and some games too; Parents can be taught to do a makeshift drama on the hospital bed. Parents can be taught about energy conservation strategies and behavioral therapy, which can also be achieved through game-based communication.

As the child can be isolated from other children because of medical treatments, their social interaction can be severely affected, resulting in post-traumatic stress disorder, social anxiety, or antisociality. To avoid such situations, OT can provide opportunities for social interaction to the child and have sessions that promote this skill. Parents and siblings also receive training and education in this field.

Some cancers can affect daily activities, such as eating/swallowing in oral cancer; Brain tumors can cause paralysis, affecting bathing, eating, writing, dressing, etc. In these areas, the occupational therapist can adopt handwriting therapy, feeding therapy, and the method of managing these professions. It can also be taught to the parents.

After medical treatment or recovery, the therapist can work with the child and reunite them with the school and community. School teachers can be made aware of the precautions, and they can be taught energy conservation techniques. Community communication for the child may include continuing or installing a new leisure activity and playing with their friends outside their home or at home with adequate precautions and support.

During palliative care, parents/caregivers may be advised to continue ADL and game-based interactions until the end of life, as it maintains their quality of life even at that stage.

Finally, we should not forget the parents and caregivers involved with the child and their treatments. They can be mentally and emotionally drained, which can affect their mental health. Occupational therapists can train these parents and caregivers on stress management strategies, relaxation strategies, and improving their quality of life. They can help parents take time and take care of their mental health.

(By Advaita Sini Achan (MOT student), Arnab Bhowmic (MOT student), and Koushik Sau (Assistant Professor Senior Scale, Occupational Therapy), Department of Occupational Therapy, MCHP, MAHE, Manipal)