In our previous posts, we explored research and expert opinions on siblings of chronically ill children. Today, we will let the siblings’ own voices come forward. Through quotes from qualitative studies, we gain a unique insight into their thoughts, feelings, and experiences. Let’s listen to what they have to say.
On Feeling Overlooked
Many siblings report that they often feel overlooked or forgotten in the family’s focus on the sick child:
“Nobody really asked me anything. Like when my mum actually died, everyone just kept asking me how my sister was coping with my mum dying, nobody actually asked me how I was, they asked me how my dad was or how my sister was, but nobody actually asked me how I was.” (Deavin et al., 2018)
This quote underscores the importance of acknowledging and including siblings, even in crisis situations.
On Mixed Emotions
Siblings often experience conflicting feelings—love and care mixed with frustration and jealousy:
“I love my brother, but sometimes I wish he wasn’t sick. Then maybe mom and dad would have more time for me. I feel bad for thinking that way, but I can’t help it.” (Anonymous, 14 years old)
It is important to normalize these feelings and give siblings space to express them without shame.
On Increased Maturity and Responsibility
Many siblings report that they mature faster and take on more responsibility:
“I guess I’m more informed about what asthma is, and when other people have it I can sympathize with them. Not that I have it, but since I know what it is, I’m able to relate to people in that sense.” (Fleary & Heffer, 2013)
This increased understanding and empathy can be a positive consequence of their experiences.
On Worries About the Future
Siblings often express concerns about the future, both for themselves and for their sick brother or sister:
“I’m afraid that he’s gonna die, really a lot sooner than I think he should…and that’s kinda hard, he’s like one of my best friends.” (Fleary & Heffer, 2013)
These concerns highlight the need for open communication and support.
On Positive Aspects
Despite the challenges, many siblings also describe positive aspects of their situation:
“This disease probably makes me appreciate my brother more; it’s pretty amazing he’s alive. We’ve gotten really close since I’ve left for school.” (Fleary & Heffer, 2013)
Such statements show how challenges can also lead to stronger bonds and increased gratitude.
On the Need for Normalcy
Many siblings express a desire for normalcy and routine in their daily lives:
“I just want things to be normal sometimes. Like, can we just have a family dinner without talking about hospital appointments?” (Anonymous, 12 years old)
This underscores the importance of maintaining normal family activities as much as possible.
On Support from Others
Siblings often appreciate the opportunity to meet others in similar situations:
“It was good to meet other kids who get it. They understand without me having to explain everything.” (Participant in a sibling group, 13 years old)
This highlights the value of support groups and other initiatives that bring siblings together.
Conclusion
These voices provide us with valuable insight into the complex and often conflicting experiences of siblings. They show us the importance of:
- Acknowledging siblings’ unique experiences and feelings
- Allowing open communication about both positive and negative aspects
- Offering support tailored to the individual needs of siblings
- Creating opportunities for siblings to meet others in similar situations
- Maintaining a balance between focusing on the illness and normal family life
By listening to these voices, we can better understand and support siblings of chronically ill children.
In our final post, we will explore how to meet the needs of the entire family when a child has a chronic illness. Stay tuned!