Healthcare team members will try to help your child and family in a way that supports your culture and spiritual well-being. However, healthcare providers have their own experiences of culture and spirituality. Their values, beliefs, and behaviour may be different from yours. They may not realize how different the hospital or hospice can feel for your child and family. 

Talk to someone on your child’s health care team if there is something that is difficult or uncomfortable for you about your child’s care. If there is something that you would like to do that is culturally or spiritually meaningful for you - participate in regular prayers; baptism; keeping the Sabbath; smudging ceremony; etc - let your healthcare providers know. Healthcare providers generally appreciate that engaging in cultural and spiritual practices when someone has a serious illness can itself be therapeutic; they will likely do whatever they can to facilitate these practices and better support your child and your family.

Your culture and spirituality may affect your ideas about illness and treatment. People from different backgrounds have different ideas about what kinds of treatment they want or don’t want for their children and how actively they want to treat an illness. Your culture and spirituality may also shape the way you talk about illness, how you make choices, and who makes the choices.

For some people, cultural, spiritual or religious beliefs help guide the medical decisions that they make for their children. This may be comforting, if you feel like something or someone you trust is guiding you. Sometimes, people feel they “have to” make a certain choice because of their faith or their family’s culture, even though they want to make a different choice. This situation can be extremely difficult. If you find yourself in a situation like this, try to find someone you trust to talk with, whether it is a family member, friend, your spiritual care provider, or a spiritual care provider at your child’s healthcare centre. By talking, you may find a different way to look at the situation, find another option, or feel better about the choices you have.

In many cultures, people do not talk with children about serious illness or death. Some parents worry that if they talk openly about death:

• People in their families or communities will judge them and treat them badly.
• It is a sign of giving up faith in a cure or a miracle.
• They will offend or disrespect God and their child or family will suffer as a result.

It is natural to want to protect children and common to think that they cannot understand or cope with such difficult information. However, research in different parts of the world shows that all children are better able to cope with their disease and treatments when they have information about the illness, answers to their questions, and someone to talk with about what they’re going through. Children and parents report having less anxiety and sadness, more comfort and closeness, and fewer regrets, when they are able to talk together, compared to when they keep their thoughts, feelings and concerns to themselves. 

Culture, spirituality, and religion can offer guidance about difficult conversations. But for most parents, there is no “right” answer and no single way to decide what to do. Here are some ideas that parents with different backgrounds thought about before they decided whether or not to talk with their children: 

• The importance of honesty in their relationship with their child. Being honest can add to a feeling of trust and being able to count on one another 
• Feeling that the child “deserves to know” because the disease is happening to them
• How the child has reacted to hearing difficult information in the past
• Thinking about whether the child usually wants to know or wants to talk about what’s happening with their body or their family

It’s extremely difficult, stressful, and emotional, to face all these challenges and decisions. There are no easy answers. It takes courage to explore them and it takes trust to share them with others. 

It can be helpful to talk with someone you trust about these struggles but it may be hard to find that “someone.” Some people may feel uncomfortable, try to change the subject, cheer you up, or try to “fix” things by offering advice or reassurance. You may need someone to talk to who can listen when you are feeling sad, and who can help you make sense of your thoughts, feelings, and beliefs without judgment and without trying to change what you think or feel. 

Try talking with a family member, friend, or a spiritual care provider in your community or in the hospital. Ask a member of your child’s healthcare team to help you to find someone to talk to about these difficult situations.