Parenting Children with Chronic Illness
Caregiver stress can occur as the demands of providing care for an ill family member increase and intensify. We learn through our readings and videos that family caregivers of all ages experience stress. Some stressors are unique to different stages of life, while others are universally experienced. This week, we will focus on the caregiving experiences of parents of children living with chronic illness.
 
We are now over half-way through in our discussions! By now, you are aware that these discussions are intended to be highly engaged conversations, rather than mini-papers. Rather than posting a paper responding to all the questions at once, you should read what has already been posted and add substantively to the discussion.  Check in often. The earlier in the week that you begin posting, the deeper the conversation and learning will be.
 
The first question in this discussion is opinion and/or experience-based, so jump right into the discussion immediately. For subsequent questions, please meaningfully integrate your course materials into your discussion.
 
First, let’s focus on an opinion/reflection based question to get a sense of day-to-day experiences of parents caring for children with chronic illness:
 
Imagine that your 9-year old son has epilepsy. He wears a helmet to prevent a head injury if he were to fall during a seizure. He is highly intelligent and is aware that people often stare at him. You are chatting with a neighbor at the bus stop while waiting for the school bus to take your kids to school. Your neighbor remarks on how difficult it must be for you having a child who is “mentally retarded.” Your son, who is standing next to you, overhears.  What might you feel? How might you respond to your neighbor’s well-intended but hurtful comment? How do you address this with your son?
 
Now, let’s apply the readings and videos to the following questions, one at a time:
 
The diagnosis of a chronic illness can be devastating news for a parent and even more so for a child. The diagnosis itself can place a family on an emotional, financial, and physical roller coaster. Meeting care needs can create tremendous stress for a family. What are some of the stressors that parents can face in caring for a child with a chronic illness, and in what ways do they deal with them? Consider the range of healthy and perhaps less healthy ways that parents may deal with emotional, relationship, financial and physical care stressors as you converse.  Bring in examples from your assigned videos in particular.
 
The chapter by Case-Smith on parenting a child with a chronic medical illness suggests that the demands and responsibilities on families where a child has a chronic illness are much different than on families where chronic illness is not present. What are some of the societal and cultural expectations on these parents? How might this differ for parents of a child whose chronic illness is not disabling versus those whose child has a significant disability? Please provide examples from this week’s learning materials.
 
Based on what we have discussed so far, how can health providers build collaborative and productive working relationships with families? Consider the parents, the child with an illness, and siblings. (Please do not respond to this question in a “mini-paper” format but rather discuss this later in the week, based on what you have learned in your materials and in discussions with your classmates.)