Quality of Life for Children with Cancer Educational Series
Many families of children with cancer and other serious diseases do not understand palliative care. They may think that it means end of life or hospice care. But it is more than that.
Pediatric palliative care is not just about the end of life. It is about improving the quality of life for patients and families from the moment of diagnosis. It should be a part of medical care for all children with serious diseases.
Pediatric palliative care is a special form of care for children and teens. It involves the complete care of the child's body, mind, and spirit. It also supports the family. The aim is to prevent and relieve suffering.
Breaking barriers to palliative care
The World Health Organization (WHO) says palliative care should be included early in the treatment of children with cancer. But access and acceptance of this care is limited worldwide, particularly in low- and middle-income countries.
Families may resist palliative care. They may have fears, misunderstandings, or knowledge gaps about this form of care.
The Pan American Health Organization (PAHO), St. Jude Children's Research Hospital, and other world experts know families need better information about pediatric palliative care. So, we developed the Quality of Life for Children with Cancer booklets. The project is part of the Global Initiative for Childhood Cancer.
These booklets describe the basics of pediatric palliative care. They are written in easy-to-understand language. They also address common questions and mistaken beliefs about palliative care.
The aim of the booklets is to increase families’ knowledge about pediatric palliative care. Studies show that children do better when their caregivers take an active part in their care.
A series for parents and other caregivers
The Quality of Life for Children with Cancer booklets can also help break barriers so that families will use palliative care services early in their child’s treatment.
Each booklet covers 1 topic area:
- General Information: This booklet explains what pediatric palliative care is. Learn who makes up the palliative care team and how they can help you and your child.
- Home care: This booklet guides you in caring for your child at home.
- Children with cancer who are in the hospital: What are the needs of children in the hospital? This booklet shares ways to improve your child’s quality of life while in the hospital.
- Symptom management: You will learn ways to handle common symptoms at home including pain, fever, and breathing problems. Always ask your child's care team for medical advice.
- Caring for caregivers: This booklet explains how looking after yourself benefits your child.
- Communication: Your child has the right to get medical information. This booklet will help you talk with them about their illness.
- Spirituality: This booklet explores spirituality in children. It provides advice for developing spiritually with your child regardless of religious faith.
- End-of-life Care: This booklet offers guidance and coping strategies for end-of-life care.
These booklets will help you provide the best possible care for your child.
Get the booklets and learn more
As your child’s caregiver, you play a big role in their care. Empower yourself by exploring the Quality of Life for Children with Cancer booklets and other resources about palliative care.
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