Skip to main content

A Caregiver Project: Moving on after a Brain Tumor

Go Search
Home
  

 A Caregiver Project: Moving on after a Brain Tumor

Microsoft Windows SharePoint Services Logo

 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. 

 A Caregiver Project: Moving on after a Brain Tumor - Participant

 Publications on Caregivers

Competence in Caregivers of Adolescent and Young Adult Childhood Brain Tumor Survivors

Objective: Caregivers of adolescents and young adults (AYA) with complex medical conditions, including brain tumor survivors, have protracted and often complex roles, yet a gap exists in understanding their perceived competence. The aim of this study is to test a hypothesized model based on the theoretical and empirical literature: better caregiver health, better survivor health, and better family functioning contribute directly to fewer caregiving demands, which in turn contribute to greater caregiver competence. Method: Telephone interviews using structured self-report questionnaires were conducted in this cross-sectional study with a sample of 186 caregivers (mothers) of childhood brain tumor survivors aged 14–40 years old who live with at least one parent. Structural equation modeling (SEM) was used to test the hypothesized model. Results: The final SEM model suggests that survivor health and family functioning directly predict caregiver competence. Caregiver health indirectly predicts caregiver competence through caregiver demands and then family functioning. Family income directly predicts family functioning. The model showed adequate fit (CFI 0.905, TFI 0.880, and RMSEA 0.081). Overall, the model accounted for 45% of variance in caregiver competence. Conclusions: For this sample of caregivers of AYA with medically complex conditions, family functioning and the health of survivors are both important to how they evaluate their skills as caregivers. The results of this study underscore the crucial role of care models that focus on optimizing the health of the survivor, caregiver, and family, along with supporting a family centered approach to their care.

 
Click below to learn more.

http://bit.ly/1INg4bn

 
Maternal Caregiving Demands for Adolescent and Young Adult Survivors of Pediatric Brain Tumors

Purpose/Objectives: To examine the daily maternal caregiving demands for adolescent and young adult survivors of pediatric brain tumors who live with their families. Design: A secondary analysis was conducted on interview data gathered during a large mixed-methods study that focused on perceived maternal caregiver competency and survivor health-related quality of life. Setting: Home interviews. Sample: A purposive sample of 46 maternal caregivers was selected from participants in the larger study. Methods: Semistructured interviews were conducted with mothers. A directed content analysis was informed by Sullivan-Bolyai’s framework describing the components of primary caregiving. Main Research Variables: Caregiving demands. Findings: Data regarding four main categories of maternal daily caregiving demands were identified from 25 of the 46 interviews: managing the illness; identifying, accessing, and coordinating resources; assisting with everyday responsibilities; and fostering psychosocial health. Conclusions: Potential day-to-day management tasks or demands of mothers of adolescent and young adult survivors of pediatric brain tumors were identified. Implications for Nursing: The major demands of caregiving are similar to those for children with other chronic conditions, with the addition of assisting with everyday responsibilities and fostering psychosocial health.

 
Click below to learn more.

http://bit.ly/1L3iPcx

 Thank You for your Participation in our Research Study!

 Acknowledgements

The research team would like to acknowledge the following sources of funding for their research:
 
Oncology Nursing Society and the American Brain Tumor Foundation. Family Management Patterns of Caregivers for AYA Childhood Brain Tumor Survivors
 
Alex’s Lemonade Stand Foundation. Mothers and Father’s Perspective: Family Mothers: Family Management of Young Adult Survivors of Childhood Brain Tumors
 
Oncology Nursing Society and the American Brain Tumor Foundation. Quality of Life of Adolescent and Young Adult Survivors of Brain Tumors
 
NIH/NINR R01 NR009651-01A1 Mothers as Caregivers for Survivors of Pediatric Brain Tumors
 
Oncology Nursing Foundation and the American Brain Tumor Foundation. Family Management and Survivors of Childhood Brain Tumors
 
NIH/NINR R01 NR08048-D1A1. Assessing Family Management of Childhood Chronic Illness (K. Knafl, PI)
 
 

 Model of Care for Childhood Cancer Survivors

Long-term survival for children with cancer is often achieved at a considerable cost in terms of medical and psychological sequelae. Although many survivors are well and require only routine follow-up and surveillance, a cohort of survivors require comprehensive management of complex, chronic medical issues by multiple subspecialists. For these survivors, care delivered within the context of an annual visit to a traditional hospital–based late effects clinic or by a primary care physician in the community is often not adequate. A specialized clinic was implemented at The Children’s Hospital of Philadelphia that crosses disciplines and provides same-day, same-clinic access to oncology/survivorship, endocrinology, pulmonology, cardiology, nutrition, and psychology. This multidisciplinary approach supports clinical efficiency and fosters seamless patient-centered care both for patients with identified late effects and for those with the highest risk for problems because of intense treatment exposures. The model is described with a focus on clinic structure/process, clinical outcomes, and benefits to survivor, health care provider, and institution. The diverse roles for nursing within this model are highlighted.

 
Click below to learn more.

http://bit.ly/1K7BelB

 A Caregiver Project: Moving on after a Brain Tumor Participant

 Publications on Survivors

Adolescent and Young Adult Survivors of Childhood Brain Tumors
 

Background: To date, there are few studies that examine the perspectives of older survivors of childhood brain tumors who are living with their families in terms of their sense of self and their role in their families. Objective: The aim of this study was to describe how adolescent and young adult survivors of childhood brain tumors describe their health-related quality of life, that is, their physical, emotional, and social functioning. Methods: This qualitative descriptive study included a purposive sample of 41 adolescent and young adult survivors of a childhood brain tumor who live with their families. Home interviews were conducted using a semistructured interview guide. Directed content analytic techniques were used to analyze data using health-related quality of life as a framework. Results: This group of brain tumor survivors described their everyday lives in terms of their physical health, neurocognitive functioning, emotional health, social functioning, and self-care abilities. Overall, survivors struggle for normalcy in the face of changed functioning due to their cancer and the (late) effects of their treatment. Conclusions: Neurocognitive issues seemed most compelling in the narratives. The importance of families went beyond the resources, structure, and support for functioning. Their families provided the recognition that they were important beings and their existence mattered to someone. Implications for Practice: The value and complexity of care coordination were highlighted by the multifaceted needs of the survivors. Advocacy for appropriate and timely educational, vocational, and social support is critical as a part of comprehensive cancer survivorship care.

 
Click below to learn more.

http://bit.ly/1EdOUJB

 
Health-related quality of life of adolescent and young adult survivors of childhood brain tumors
 

Objective: Our aim was to expand research on predictors of health-related quality of life (HRQOL) for adolescent and young adult survivors of childhood brain tumors who are not living independently by evaluating the mediating role of family functioning in the association of disease severity/treatment late effects with survivor self-report and caregiver-proxy report of physical and emotional HRQOL. Methods: Mothers (N= 186) and their survivors living at home (N= 126) completed self-report and caregiver-proxy report of physical and emotional HRQOL. Mothers completed family functioning measures of general family functioning, caregiving demands, and caregiver distress. Medical file review and caregiver report were used to evaluate disease severity/treatment late effects. Results: Using structural equation models, family functioning was adjusted for sociodemographic factors. Disease severity/treatment late effects had significant direct effects on self-report and caregiver-proxy report of physical and emotional HRQOL. Family functioning had a significant direct effect on caregiver-proxy report of physical and emotional HRQOL, but these findings were not confirmed for self-report HRQOL. Model-fit indices suggested good fit of the models, but the mediation effect of family functioning was not supported. Conclusions: Disease severity/treatment late effects explained self-report and caregiver-proxy report of physical and emotional HRQOL for these adolescent and young adult survivors of childhood brain tumors. Family functioning was implicated as an important factor for caregiver-proxy report only. To enhance physical and emotional HRQOL, findings underscore the importance of coordinated, multidisciplinary follow-up care for the survivors who are not living independently and their families to address treatment late effects and support family management.

 
Click below to learn more.

http://bit.ly/1MfexSh

 Project Team

 Project Contact Information

Contact: Janet A. Deatrick, PhD, RN, FAAN

Email: deatrick@nursing.upenn.edu

Phone: 215-898-1799

Fax: 215-573-5925

Twitter:@JanetDeatrick #PennHealthEquity

https://twitter.com/JanetDeatrick

 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...)

 Links for the Young Adult Survivor