10 Ways to Support Siblings When a Child is in Pediatric Hospice Care

 When a child is in pediatric hospice care, it can be an incredibly tough time for their brothers and sisters as well as the parents. Pediatric hospice care is designed to provide the best possible comfort and quality of life for a child who is very sick and not expected to recover. This care often includes managing pain, offering emotional support, and ensuring that the child is surrounded by compassion and kindness. However, while the primary focus is understandably on the child receiving hospice care, it’s crucial not to overlook the emotional and psychological needs of their siblings.

Siblings of a child in hospice care are also experiencing a range of emotions and challenges. They might feel confused, scared, or even neglected as the family’s attention understandably shifts towards the child who is very ill. These siblings might also be grappling with feelings of sadness, anxiety, or guilt, and their emotional needs can sometimes be overshadowed by the demands of the situation. Supporting them is just as important as supporting the child in hospice care.

Helping siblings navigate this difficult period involves providing comfort and acknowledging their feelings, including them in conversations, and ensuring they have a support system to rely on. They need to understand what’s happening in a way that is suitable for their age, and they also need to feel that they are still a loved part of the family.

1. Talk Openly and Honestly

When a child is in pediatric hospice care, open and honest communication with their siblings is one of the most important things that you can keep up. It's important to use simple and clear language to explain what’s going on. For example, you might say, “The doctors are taking special care of [sibling’s name] to help them feel as comfortable as possible because they are very sick.” Being straightforward helps siblings understand the situation better and prevents them from feeling confused or left out. It’s important they know what’s happening in a way that suits their age and understanding, so they don’t imagine worse scenarios or feel that important details are being hidden from them.

2. Answer Their Questions

Siblings are likely to have many questions about what’s happening and why. It’s essential to answer their questions as thoroughly and clearly as you can. If they ask something you don’t know, it’s perfectly fine to admit it and promise to find the answer together. This not only helps them feel that their concerns are important but also builds trust and ensures they feel included in the family’s efforts to understand and cope with the situation. As a matter of fact, if you hired a hospice agency, you can ask for copies of their medical records from the hospice software, and go through some of the more simple sections with your children so they can better understand.

3. Reassure Them

Children might have a lot of worries during this time, including fears about the sick sibling, their own well-being, or the overall state of the family. Reassure them that it’s normal to feel sad, scared, or even confused. Let them know that they are safe and loved, and remind them that the family is there for each other. Knowing that their feelings are valid and that they are not alone can provide significant comfort and stability.

4. Keep a Routine

Maintaining a regular routine is important for siblings during this time. Familiar activities like going to school, having playtime, and enjoying family meals can provide a sense of normalcy and stability. Routine helps children feel grounded and can offer a break from the emotional stress of the situation. 

5. Offer Extra Attention

Siblings might feel overlooked when so much focus is on the child in hospice care. Make an effort to give them extra attention and make them feel valued. This could mean spending special one-on-one time with them, like reading a book together, playing a favorite game, or simply talking about their day. 

6. Encourage Expression

Encouraging siblings to express their feelings is just as important as the communication factor. Some children might find it easier to share their emotions through creative activities like drawing, writing, or playing. Let them know that it’s okay to have a wide range of feelings and that expressing these feelings is a healthy way to cope. 

7. Provide Opportunities to Be Involved

If it feels appropriate, involve siblings in activities related to their sick sibling. This might include making cards, drawing pictures, or simply spending time together in a way that’s comfortable for them. Being involved allows them to express their love and support in meaningful ways, which can be comforting for them as well.

8. Offer Emotional Support

Be available to listen and provide emotional support whenever siblings need it. Let them know that they can talk about their feelings whenever they want and that you’re there to support them through this challenging time. Sometimes just having someone to listen can make a big difference in how they’re feeling. Showing empathy and understanding can help them feel less alone and more supported as they navigate their emotions.

9. Watch for Changes in Behavior

During this stressful time, siblings might show their feelings through changes in behavior. This could include acting out, withdrawing from others, or struggling with schoolwork. Keep an eye on their behavior and address any changes with kindness and understanding. If you notice significant or concerning changes, it might be helpful to seek advice from a counselor or therapist who can provide additional support and coping strategies for the child.

10. Take Care of Yourself

Supporting siblings and managing the family’s needs can be demanding, so it’s important to take care of yourself, too. When you’re feeling balanced and healthy, you’re better equipped to support your children. Make time for self-care, whether that means taking a break, seeking support from friends or professionals, or simply finding moments to relax. Taking care of your own well-being ensures that you can be a strong and effective support for your whole family during this difficult time. Burnout is serious; so serious that there are 5 facts about caregiver burnout that will startle you, so try your best to manage your stress.

Conclusion

Supporting siblings when a child is in pediatric hospice care requires attention, compassion, and understanding. Remember that their well-being is just as important as that of the child in hospice care, and taking steps to support them is a crucial part of the family’s journey through this difficult time.