A great place to start is by asking about resources available to you at your current hospital.
Social workers assess each person's individual needs and can provide appropriate support. They are aware that cancer impacts all aspects of life and can usually assist with relationships, work challenges and finances. This may include short-term counseling, advocacy and linkage to community resources. Social workers may also be able to provide information and education about insurance, advance directives, palliative care, hospice, family leave and disability benefits, lodging, transportation and cancer-related support programs available in your community.
This team member is frequently a social worker trained in pediatric cancer care. These specialized social workers can help families cope with every part of the cancer journey – from understanding the diagnosis and treatment plan, to navigating financial, social, and emotional issues, to assisting with the child’s transition back to school and regular activities after his or her care is complete.
As a parent, you are your child’s biggest advocate. Many hospitals consider parents an integral part of their care team because parents know their children best, and they need to be able to tell if something is wrong. Parents can advocate for their child in all areas including second opinions, treatment decisions, communication with staff and even school. Advocacy isn’t always easy and often times there is an expert Patient Advocate available through your hospital to help you navigate this challenge.
Child Life Specialist
A child life specialist can be the voice of the child within the cancer care team to ensure his/her best interests. They can also educate children about their diagnosis and treatment, teach children positive coping techniques, and support children through painful procedures and long hospitalizations. Overall, the goal is to keep the child happy and free from traumatizing experiences. They often provide crafts, toys and positive experiences for children during treatment. Child life specialists often have a background in child development, psychology and counseling.
Palliative Care Program
Some hospitals, or in conjunction with your local community, may offer a comprehensive palliative care program. These programs sometimes include support while the child is admitted to the hospital but can also cover care at home. The objective of the program is to focus on the quality of life for the child, and their families. Members of the team may work with the child and their family to identify specific goals in physical, psychiatric/psychological, social, spiritual, cultural, ethical and legal aspects of care. Many teams include a medical director, nurses, social workers, non-denominational chaplains, expressive therapists, bereavement counselors, and volunteers.
The death of a child touches everyone in the family and forever changes its landscape. Sadness, anger, and hopelessness are some of the emotions often felt by bereaved parents. Family therapists are specially trained to understand the profound impact of this loss on an individual and a family and can assist through a time of bereavement.
Support groups for bereaved parents offer a place to talk about your child, your loss, fears, anger, anxieties and other feelings. These groups also help parents learn from the experiences of others who have suffered the same or a similar type of loss. Several support groups provide services for other family members, such as siblings and grandparents.