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A Caregiver Project: Moving on after a Brain Tumor

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 Project Team

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(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.

 Background Information

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.

 Acknowledgements

The research team would like to acknowledge the following sources of funding for their research:
 
National Institute of Nursing Research
R01 NR00965 (J. Deatrick & W. Hobbie)
 
Other support
NINR- R01 NR08048 (K. Knafl, J. Deatrick, A. Gallo)
Oncology Nursing Society (J. Deatrick, PI)

 Links

Expand/Collapse Group : Brain Tumor Groups ‎(6)
  American Brain Tumor Association
  Brain Tumor Foundation for Children
  Children’s Brain Tumor Foundation
  National Brain Tumor Society
  Pediatric Brain Tumor Foundation
  The Childhood Brain Tumor Foundation
Expand/Collapse Group : Cancer Groups ‎(3)
  American Cancer Society
  National Coalition for Cancer Survivorship
  National Comprehensive Cancer Network
Expand/Collapse Group : Journals ‎(3)
  Clinical Journal of Oncology Nursing
  Journal of Pediatric Oncology Nursing
  Oncology Nursing Forum
Expand/Collapse Group : Professional Groups ‎(3)
  Association of Pediatric Hematology/ Oncology Nurses
  Oncology Nursing Society
  The Society for Neuro-Oncology
Expand/Collapse Group : Research ‎(5)
  Cure Search
  National Cancer Institute
  National Institute of Nursing Research
  Pediatric Brain Tumor Consortium
  US National Institutes of Health Clinical Trial Information
(More Links...)
 
 

 Family Management

 The Family Project

(Presently Recruiting)
 
The preliminary results of our current federally funded study indicate that when a mothers' experience a positive quality of life that they feel their survivor also experiences a more positive quality of life. Therefore we feel that quality of life could be an important link in the care of survivors, the mothers who are often their caregivers, and their families. We need additional information, however, before taking the next important steps in our research. We need to better understand the experiences of other family members. In this study we are studying mothers and fathers.
 
We are an interdisciplinary team of clinicians and researchers who wish to improve the care of childhood brain tumor survivors and their families. The long term goal of our research is to improve the Health Related Quality of Life for both the young adult brain tumor survivors and their families.
 
Criteria for Inclusion:
 
Mothers and fathers both participate individually, if:
  • 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/

 

 Project Contact Information

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

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 CHOP Project Team

 Links for the Young Adult Survivor