A Caregiver Project: Moving on after a Brain Tumor

(Data Collection Completed)

We wish to thank the mothers and survivors who participated in this study. We completed telephone interviews with 189 caregivers and 137 survivors. We also completed in home interviews with 45 caregivers and 41 survivors. We are presently analyzing data and will post updates regarding our findings.

Approximately 26, 000 children in the United States under 19 years of age are survivors of brain or central nervous system tumors.  About 65% of these children reach survival up to 5-years due to current advances in treatment with chemotherapy, surgery, radiation, and supportive care.  However, survival of these children can come at a cost to their cognitive and social functioning, growth and development, and major organ function.  Caring for survivors of childhood brain tumors often continues into adulthood, and mothers are usually the caregivers for these children.  Mothers can struggle with these demands, which can influence how competent they feel as caregivers.  This study aimed to better understand how caregivers of brain tumor survivors go about handling the care for their child in different areas.  Data was gathered about caregiver demands, psychosocial, physical, and household functioning from caregiver mothers and adolescent/young adult childhood brain tumor survivors.  Results of the study will be used to develop interventions to: 

• enhance the perceived competence of mothers who are caregivers for these survivors.
• improve the quality of life of the survivors. 

Criteria for Inclusion:

Mother of a 14-40 year old brain tumor survivor who was:

§         At least 5 years from diagnosis

§         At least 2 years from discontinuation of treatment

§         Resides at least part-time in the same household as mother

Criteria for Exclusion:

If the survivor:

§         Had a multi-system genetic condition

§         Had cognitive or developmental issues prior to cancer diagnosis

PHASE 1:  We interviewed on the telephone at a time that was convenient for you.  Interviews with the mothers lasted about 1 hour.  Interviews with the survivors (if they were able to participate) lasted about 30 minutes.  Mothers and survivors received a $20 money order or gift card with participation for each interview. Survivors didn’t have to participate in order for the mother to participate.

PHASE 2:  We asked all mothers if we could contact them at a second time for another phase of the study.  If you gave us permission to contact you, you were under no obligation to agree to participate in the second phase of the study.  We were looking for families who live close to the Children's Hospital of Philadelphia for a one-on-one in person interview.  Mothers and survivors received a $20 money order or gift card for participation in each phase of the study.

• They are living in the same household as the survivors, at least part-time;
• They are the parents for a young adult survivor (18-40 years old) of a pediatric brain tumor- one parent needs to be legally related to the survivor and the other need not to be biologically or legally the parent but involved on a day-to-day basus with them; and,
• The mother previously participated in our study, "Mothers as Caregivers for Survivors of Brain Tumors"

Source of Funding:

Alex's Lemonade Stand

https://alexslemonade.org/

• Email: familyproject@nursing.upenn.edu

• Phone: 866-365-5055

• Fax: 215-573-5925

• Address: Janet Deatrick, PhD, FAAN, RN

                Family Project P.O. Box 42672

                Philadelphia, PA 19101-2672

I'm Too Young for This!