Caring for Someone with Sickle Cell
Taking care of someone with sickle cell disease (SCD) can be both rewarding and challenging. There may be many things to remember to keep your loved one healthy, and seeing a loved one sick or in the hospital is difficult.
The disease can also interrupt your daily life and put a large emotional burden on caregivers. Make sure you take care of your own mental health while providing care for your loved one.
What is the role of a sickle cell disease caregiver at home?
The first thing to do as a caregiver for a child or loved one with SCD is to educate yourself on the disease. It is good to know what symptoms and complications are possible and how to prevent and treat them. It is also important to make sure they see the doctor regularly and get the tests and procedures they need.1
The most common complication for people with SCD is acute pain episodes. Talk to your loved one’s doctor about your role in their pain management plan. When an acute pain episode starts, you may be responsible for:1
- Giving them certain pain medicines
- Making sure they drink water
- Helping them with heating pads, warm baths, or massage
- Deciding when to go to the ER for severe pain
The pain management plan will also include their triggers of sickle cell pain. You can help your loved one avoid pain crises by:1,2
- Making sure they stay hydrated
- Keeping them cool on very hot days
- Making sure they dress warmly on cold days
- Preparing for travel
Another risk for children with SCD is infections. Help prevent infections in children with SCD by:1,3
- Washing your and their hands often with soap and water
- Avoiding eating raw or undercooked meat
- Making sure they take penicillin or other antibiotics, if prescribed by their doctor
- Making sure their routine and additional vaccinations are up-to-date
You can also help your loved one stay physically and mentally healthy. Make sure they eat a balanced diet and get regular, mild exercise. Help children with SCD cope with the disease by joining support groups and ensuring they have trusted people to talk to. As children age, help them become more independent in managing their own treatments and condition.4
What can I do to help my child in the hospital?
A hospital stay can be difficult for children. While they are in the hospital, they may miss their friends and family. They may be bored and scared about what is happening to them. Hospital stays interrupt routines and daily activities that children need for normal development. Children of different ages may have different concerns about being in the hospital.5,6
Anxiety and stress can put a large emotional burden on children and can worsen complications of SCD. There are some ways parents and family members can help reduce stress for children with SCD in the hospital. These include:5,6
- Preparing your child ahead of time if the hospital stay is planned
- Talking to them about any fears and concerns they have
- Answering their questions honestly
- Ensuring they get regular visits from family and friends (if visits are not in-person, phone and video calls can help)
- Bringing comfort items from home
- Giving them opportunities for choice, decision making, and independence
- Encouraging distractions with toys, books, games, and puzzles
- Ensuring they can interact with friends over social media platforms
Hospitals often organize ways to make sure children get enough playtime and stimulation. Talk to your doctor and a social worker about how to prepare and help your child cope with a hospital stay.
How are caregivers affected?
Caring for someone with SCD is often a special experience that brings family members closer together. Many families say that the disease makes them work together more and communicate better.7
However, caregivers experience large financial and emotional burdens. SCD affects every aspect of family life. Careers, personal lives, leisure, and social activities all change when a child or family member is diagnosed with SCD. This can affect caregivers’ mood, sleep quality, and overall quality of life.7,8
Some ways to maintain your own mental health while providing quality care for your loved one include:7,8
- Learning as much as possible about the disease
- Avoiding triggers of pain crises
- Joining a support group for caregivers
- Staying active in your community
- Helping them control their own care
- Taking time for your own social relationships, career goals, and hobbies
- Finding someone to talk to, like a therapist