Posted: May 13th, 2022

Dealing with a Child Who Has a Terminal Disease

Dealing with a Child Who Has a Terminal Disease

Introduction
When a child is diagnosed with a terminal disease, it is a devastating and overwhelming experience for the parents, siblings, relatives and friends. A terminal disease is one that has no cure and will eventually lead to death. Some examples of terminal diseases in children are cancer, cystic fibrosis, muscular dystrophy, AIDS and congenital heart defects. The parents of a terminally ill child face many challenges and decisions, such as how to tell the child and other family members about the diagnosis, how to cope with the emotional and physical stress, how to provide the best possible care and comfort for the child, how to deal with the medical system and insurance issues, how to plan for the end-of-life care and funeral arrangements, and how to grieve and heal after the loss.

Communication
One of the most difficult tasks for the parents of a terminally ill child is to communicate with the child about the diagnosis, prognosis, treatment and death. The parents may feel tempted to hide or minimize the truth, hoping to protect the child from pain and fear. However, experts agree that honesty and openness are essential for helping the child cope and prepare for what is ahead. According to Stanford Medicine Children’s Health, “talking openly and honestly is an important way to help ease your child’s anxiety”. The parents should use clear and age-appropriate language, avoid euphemisms or vague terms, answer the child’s questions truthfully and respectfully, acknowledge the child’s feelings and emotions, reassure the child of their love and support, and involve the child in decision-making as much as possible. The parents should also communicate with other family members, especially siblings, who may feel confused, angry, guilty or neglected. The parents should encourage them to express their thoughts and feelings, provide them with information and support, and include them in the care of the child.

Care
The parents of a terminally ill child have to make many decisions about the care of their child, such as what kind of treatment to pursue, where to receive it, who to involve in it, and when to stop it. The parents should consult with the medical team about the benefits and risks of different options, such as surgery, chemotherapy, radiation therapy, palliative care or hospice care. The parents should also consider the child’s preferences, quality of life, comfort and dignity. The parents should seek help from various sources, such as family members, friends, neighbors, volunteers, social workers, counselors or support groups. The parents should also take care of themselves by maintaining their physical and mental health, managing their stress levels, finding time for rest and relaxation, seeking professional or spiritual guidance if needed, and maintaining their hobbies and interests.

Grief
The parents of a terminally ill child experience grief not only after the death of their child, but also before it. This is called anticipatory grief. Anticipatory grief is a normal reaction that involves sadness, anxiety, anger, guilt or denial about the impending loss. Anticipatory grief can help the parents prepare for the death of their child by allowing them to say goodbye, express their love and gratitude, resolve any conflicts or regrets, create memories or rituals, or make plans for the future. However,
anticipatory grief can also interfere with the parents’ ability to cope or enjoy their time with their child by causing them to withdraw emotionally or physically from their child or other loved ones. Therefore,
the parents should balance their anticipatory grief with hope and acceptance.

After the death of their child,
the parents enter a new phase of grief that can last for months or years. This is called bereavement. Bereavement is a complex process that involves physical,
emotional,
social
and spiritual changes.
Bereavement can affect every aspect of the parents’ life,
such as their health,
relationships,
work
or faith.
Bereavement can also trigger various reactions,
such as shock,
numbness,
disbelief,
anger,
guilt,
depression,
loneliness
or relief.
Bereavement can be influenced by many factors,
such as the cause,
duration
and circumstances of the child’s illness
and death,
the parents’ personality,
coping style
and support system,
the parents’ cultural
and religious beliefs
and practices,
and the parents’ expectations
and meaning of their loss.

There is no right or wrong way to grieve.
Each parent grieves in their own way
and at their own pace.
However,
there are some strategies that can help the parents cope
and heal after losing their child.
Some of these strategies are:

– Seek support from family members,
friends,
other bereaved parents,
support groups
or professionals who can listen,
understand
and empathize with your grief.
– Express your feelings through talking,
writing,
art,
music
or other creative outlets that can help you release
and process your emotions.
– Honor your child’s memory by creating a scrapbook,
a video,
a website,
a memorial service
or a charity that can celebrate your child’s life
and legacy.
– Take care of yourself by eating well,
sleeping enough,
exercising regularly
and avoiding alcohol
or drugs that can worsen your mood
or health.
– Seek help if you experience symptoms of complicated grief,
such as persistent depression,
anxiety,
suicidal thoughts
or behaviors,
or difficulty functioning in daily life.
Complicated grief is a condition that requires professional treatment
and intervention.

Conclusion
Dealing with a child who has a terminal disease is one of the most challenging and painful experiences that a parent can face. However, it is also an opportunity to show the child unconditional love, compassion and respect, and to cherish every moment with them. The parents of a terminally ill child need to communicate, care and grieve in ways that are best for them and their child. The parents also need to seek and accept help from various sources that can support them through this difficult journey. The parents can find hope and healing by honoring their child’s memory and finding meaning and purpose in their loss.

Bibliography

: Stanford Medicine Children’s Health. (n.d.). Psychosocial Needs of the Dying Child. Retrieved January 9, 2024, from https://www.stanfordchildrens.org/en/topic/default?id=psychosocial-needs-of-the-dying-child-90-P03055

: MedlinePlus. (n.d.). Talking with a child about a parent’s terminal illness: MedlinePlus Medical Encyclopedia. Retrieved January 9, 2024, from https://medlineplus.gov/ency/patientinstructions/000848.htm

: CaringBridge. (n.d.). How to Care for Your Terminally Ill Child | CaringBridge. Retrieved January 9, 2024, from https://www.caringbridge.org/resources/how-to-care-for-terminally-ill-child/

: Legacy.com. (n.d.). What to Do When a Loved One Has a Terminal Illness | Legacy.com. Retrieved January 9, 2024, from https://www.legacy.com/advice/what-to-do-when-a-loved-one-is-terminal/

: Mayo Clinic. (2018: 2024 – Write My Essay For Me | Essay Writing Service For Your Papers Online, November 17). Grief: Coping with the loss of your loved one. Retrieved January 9, 2024, from https://www.mayoclinic.org/healthy-lifestyle/end-of-life/in-depth/grief/art-20045340

: American Cancer Society. (2018: 2024 – Write My Essay For Me | Essay Writing Service For Your Papers Online, February 16). Helping Children When a Family Member Has Cancer: Dealing With a Parent’s Terminal Illness. Retrieved January 9, 2024, from https://www.cancer.org/treatment/children-and-cancer/when-a-family-member-has-cancer/dealing-with-parents-terminal-illness.html

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