Tips for Talking to Your Child and Empowering Them to Take Care of Their Wellbeing
Helping a child understand their condition, especially a chronic one like sickle cell disease, involves a thoughtful and age-appropriate approach.
It’s also important to keep an open dialogue with your child as they get older. As they take on more responsibility for managing their sickle cell disease, and their priorities change, it’s important that they know they can come to you when they need help or support.
Educate Yourself and Your Child
Keep up-to-date with information about sickle cell disease. This will help you better understand what your child is going through, which in turn helps you have more supportive and effective discussions with them.
You can use this knowledge – along with resources that explain SCD in a child-friendly way – to continue to educate your child about their condition in an age-appropriate way. This helps them take more control over their health as they get older.
A healthcare professional can also help you figure out the best way to educate your child and give advice on how to address specific needs.
Encourage Open Communication
When your child shares their feelings or concerns with you, listen closely and validate their experiences. This will help you create an environment where they feel comfortable continuing to share without fear of being judged.
Another way to encourage open communication is to regularly talk to your child about their condition and ask questions. Be supportive and reassuring and avoid making them feel “different.” It’s important you let your child know that you’re always there for them and they’re not alone.
Promote Self-Advocacy and Independence
As your child gets older, start to involve them in decisions about their care. With your child’s doctors, you can discuss medications, lifestyle changes, general wellbeing, and more. This will help your child build confidence so they can gradually take responsibility for their own care.
It’s also important to teach and encourage the skills your child will need to care for themselves, such as:
- Communication skills, so they can tell doctors, teachers, friends, and family members their needs and symptoms
- Problem solving, so they can become more resilient and find solutions to challenges related to their condition
- Self-advocacy, so they can speak up when they have problems or something doesn’t seem right to them
Address Emotional and Social Challenges
Sickle cell disease is a medical condition but it can also cause a lot of complicated emotions. Don’t ignore this part of your child’s condition. Make sure you discuss the emotional impact of SCD and let your child know it’s okay to be scared, upset, or frustrated.
SCD can also cause social challenges. It can make your child feel different from their peers or keep them from participating in social situations. Make sure you address these issues too, and help your child navigate them when you can.
Have Regular Check-Ins
Scheduled check-ins with your child about how they’re feeling let them know that you’re dedicated to listening to them. These check-ins also give you and your child opportunities to address issues as they come up.
When you have these check-ins, you should also encourage your child to ask questions. Answer them as clearly as possible, but it’s okay to say, “I don’t know.” You can find the answer together if needed.
Provide Emotional Support – And Get Help if Needed
How you react to challenges can influence how your child deals with their own challenges. Showing them healthy coping strategies and a positive attitude can go a long way in providing emotional support.
But you also don’t need to provide support alone. If your child needs more than you can give them, you can get help, including:
- Counseling: Your child – and potentially the whole family – may benefit from talking to counselor or therapist, who can give extra support and coping strategies.
- Peer support: Connecting with other young people with sickle cell disease can make your child feel less alone. They can also learn new coping strategies.
- Support groups: Online or in-person support groups for SCD can provide resources and a community of individuals who understand your child's experiences.
- Role models: Connect your child with role models or mentors who also have sickle cell disease. This can provide inspiration and a sense of community.
- These approaches can all help you ensure that your child feels supported and empowered as they navigate life with sickle cell disease.
How to Take Care of Yourself Too
Taking care of yourself as a caregiver is extremely important. It helps you with your own health and wellbeing, and allows you to give your child the best support possible. Here are some strategies for self-care:
Get regular check-ups and don’t ignore any health concerns that come up for you. Remember that your health is just as important as your family’s health.
It’s also important to make sure you have a healthy lifestyle as much as possible. Eat a diet with fruits, vegetables, whole grains, and lean proteins like chicken and fish; exercise regularly; and make sure you get enough sleep. This will also help you better manage stress.
Having your own support network can help reduce stress and provide emotional and logistical help when you need it. This may be a network of friends and family, but connecting with other caregivers can help too. You can look into support groups or online forums where you can talk to other people in similar situations.
And don’t forget to actually reach out to your network when you need to! Be open with friends and family about how you’re feeling, so they can better support you. This also means asking for help when you need it. Remember that you don’t need to do everything on your own.
Being a caregiver 24/7 can lead to burnout. If you are burnt out, you may not be able to take care of yourself or others. It’s important to set limits and boundaries between caregiving and personal time. This helps you get what you need to be your best self – and the best caregiver.
- Schedule “me” time: Schedule regular time for activities you enjoy, whether it’s reading, exercising, or another hobby. Anything that helps you relax can help you manage stress and give you a sense of normalcy.
- Take short breaks: Even short breaks throughout the day can help you recharge. Use these moments to do something that refreshes you.
- Delegate tasks: Share caregiving responsibilities with other family members or get help from professional services if possible.
Just like you can’t do every caregiving task on your own, you may not be able to fully manage stress or anxiety on your own. There’s no shame in getting counseling or therapy to help you manage. In fact, it’s a decision you should be proud of. A mental health professional can give you strategies and support to help you through burnout, complex emotions, or just the everyday stress of caregiving.
Staying organized can help you reduce stress and keep you from feeling overwhelmed. Here are some strategies to try:
- Use a planner or app to keep track of medical appointments and personal appointments.
- Make to-do lists to help you remember and track tasks.
- Break tasks into manageable steps and set realistic goals.
Celebrating small wins and positive moments can keep you motivated and make you feel accomplished. This can help reduce stress and anxiety related to caregiving. For some people, it may help to keep a gratitude journal where you write down the positive aspects of your life. This helps shift your attention from things you find stressful.
Taking care of yourself doesn’t just help you – it helps you provide effective and compassionate care for your child. Bringing these strategies into your life will help you be a better caregiver and improve your own physical, emotional, and mental health.