Having a child who has been diagnosed with a terminal illness can not only take a toll on the child, but also the rest of the family. Life can get very challenging when there is a sick child in the family. Knowing the ins and outs of the child’s illness, what the child needs, and what the rest of the family needs can make this tough time a little more manageable. Among many other things, making a positive environment for the child and helping them, and the rest of the family keep hope is vital (Smith, 2014).
When you’re going through something as dark and painful as having a terminally ill child, it is crucial that you find something positive in every day, because you don’t know which day could be your child’s last. In an article I read called, “Caring for a Terminally Ill Child: A Guide for Parents” they suggest keeping the child’s life as normal as possible. For example, if he/she is well enough to continue to go to school let them or if they have to miss school for a long period of time ask the teacher to have the class write your child letters. Doing this allows for your child to be able to communicate with his or her friends and classmates, normalizing their illness. Another thing you can do to help make their illness less negative is to encourage them to set goals for themselves. These could be as small as getting out of bed once a day, or as big as going for a walk after a round of chemo (Caring for A Terminally Ill Child, 2015).
You may feel like you need to give your child everything or let them get away with whatever they want because they’re sick and you feel guilty, but that is the exact opposite of what you should do. If you are trying to find a happy balance of parenting, I have the answer to that balance, it’s called authoritative parenting. Authoritative parenting is when the parent has high levels of communication and warmth for the child, but they also have high expectations of behavior from the child. This style of parenting is the best option because it allows you to identify with your child while still having compassion for them. It allows the child to know that nothing has changed just because they’re sick, they still have the same rules and expectations they had before they were diagnosed. Authoritative parenting also helps the rest of the children in the family so they don’t feel like there is any special treatment for the child that is sick. This ensures everyone still has the same rules and expectations.
Another difficult part about having a sick child, is balancing the sick childacross a journal article called, “Parents’ Experience of Living with a Child with a Long-Term Condition: A Rapid Structured Review of Literature” don’t let the title scare you, it’s an easy read. This article gives on how to normalize a busy family with a sick child. Studies have shown that breaking the family into two subunits makes life a little more manageable. Having one parent look after the child with the long-term illness and the other parent look after the needs of the other children actually helps strengthen the family because everyone is on the same page and communicating effectively. This is also known as a family subsystem. A family subsystem occurs by breaking up the family into smaller groups. This helps to let everyone know their role, which leads to better communication. To avoid an individual parent not being able to spend time with the sick child or the other children, they can switch weekly with which children they are responsible for. Therefore, all of the children get the same amount of time with both parents. Families with children are very busy and it can get difficult to find time for the whole family to spend together. Having a sick child with their appointments and hospitalizations makes it that much harder for families to spend time together. By setting time aside each week for the whole family to do an activity, go out to dinner, or just watch a movie together will allow the whole family to spend time with each other. This will also maximize the amount of time everyone gets to spend with their sick child or sibling, which will create nice memories for everyone to have once their loved one passes. (Smith, Cheater, and Baker, 2012).
Sources
Caring for a Terminally Ill Child: A Guide for Parents. (2015, November 23). Retrieved March 20, 2017, from http://www.cancer.net/navigating-cancer-care/advanced-cancer/caring-terminally-ill-child-guide-parents
Smith, H. (2014). Giving hope to families in palliative care and implications for practice. Nursing Children & Young People, 26(5), 21-25.
Smith, J., Cheater, F., & Bekker, H. (2015). Parents’ experiences of living with a child with a long-term condition: a rapid structured review of the literature. Health Expectations, 18(4), 452-474.
Image of Sick Child by tiverylucky at http://www.freedigitalphotos.net/images/Children_g112-Sick_Children_p166531.html