Exploring Family Management of Childhood Brain Tumor Survivors

1. Exploring Family Management of Childhood Brain Tumor Survivors Janet A. Deatrick, PhD, FAAN University of Pennsylvania School of Nursing Associate Professor and Associate Director Center for Health Disparities Research

2. Research Team • Wendy Hobbie, MSN, CRNP – CHOP PI • Susan Ogle, MSN, CRNP • Jill Ginsberg, MD • Michael Fisher, MD • Erin K. Mullaney, MSN, CRNP • Kim Mooney-Doyle, MSN, CRNP

3. Acknowledgements • The families who participated • Oncology Nursing Society and the American Brain Tumor Foundation • National Institute of Nursing Research (NINR) • R01 NR08048 (Knafl) • R01 NR00965 (Deatrick & Hobbie)

4. Goals • Short term: What does family management mean to parents of adolescent and young adults who survived brain tumors? • Long-term: Derive a theoretical base for understanding families of childhood brain tumor survivors

5. What Theoretical/Conceptual Models Currently Exist To Understand These Families? • Family stress and coping • Role theory • Family adaptation and family hardiness • Systems theories • Substantive theories developed via qualitative methods

6. What Measures Currently Exist To Study These Families? Well established instruments exist consistent with these conceptual/ theoretical frameworks, measuring: • General family processes • Disease specific family management-asthma, cystic fibrosis, and diabetes

7. The Family Management Measure (FaMM) Can Help us Understand These Families • The FaMM tells us about • The integration of the “condition” in everyday life • Families’ efforts to manage childhood illness & incorporate illness management into family life • Family life in the context of chronic illness • The FaMM • Complements research on family/individual functioning

8. nursing.unc.edu/research/famm/

9. Families Management “Clusters”

10. Methods Cognitive interviews (see: Knafl, Deatrick, Gallo, Holcombe, Bakitas, Dixon, & Grey, 2007) • Interviewed 22 parents • Discovered what family management means to them Case studies • Selected 2 families with contrasting family management to illustrate research and clinical potential of family management

11. Parent Sample for Cognitive Interviews (n=22) • Respondents: • Mothers: 77% (17/22) • Fathers: 23% (5/22) • Demographics: • Married: 86% (19/22) • Biological parent of survivor: 100% (22/22) • Age 31-50 years: 55% (12/22) • Caucasian: 82% (18/22); African American: 14% (3/22); Asian: 5% (1/22) • Employed FT: 64% (14/22) • College educated: 45% (10/22) • Parent with serious illness: • Mothers: 23% (5/22) • Fathers: 0% (0/22)

12. Survivor Sample for Cognitive Interviews (n=22) • Male: 73% (16/22) • Female: 27% (6/22) • Mean age:19.3 years • School: • Grade school: 23% (5/22) • High school: 9% (2/22) • Post-high school: 64% (14/22) • Parental rating of survivor health status: • Good or excellent: 91% (20/22) • Presence of additional chronic illness: 91% (20/22)

14. Additional Finding • Carefully framing empirical method, research questions, and measures to include ideas of participants • Included measures of Life Threat in current research • Modified directions for the FaMM • Acknowledged the importance of their effort during diagnosis and treatment, but stress the importance of reporting their present effort for this instrument

15. Two Survivors and Their Families: Two Stories

16. Two Survivors • AZ, a 22 year old female • Diagnosis: • Hypothalamic astrocytoma at age 14 years. • Treatment consisted of surgery, chemo, & radiation • Complications during therapy • Off-therapy issues • TL, a 23 year old male • Diagnosis: medulloblastoma at age 8 years. • Treatment: surgery chemo & radiation • Complications during therapy • Off-therapy issues

17. Two Families • Mr. & Mrs. L • Caucasian • Spousal roles & different coping styles • No chronic /acute illnesses in family • Siblings • Cancer experience in family • Role of the survivor in family • Caregiver’s struggles • Mr. & Mrs. Z • Hispanic • Spousal roles & different coping styles • Mom is a diabetic: no other issues • Siblings • Cancer experience in family • Role of survivor in family • Caregiver’s struggles

18. Compare and Contrast their Stories • Survivor’s Daily Life • View of Condition Impact • Family Life Difficulty • Condition Management Effort • Condition Management Ability • Parental Mutuality

19. Family Management - Tim’s Family • Survivor’s Daily Life: even though Tim’s “normal” has changed nothing of any consequence is different for him; there are things he can’t do but he compensates and does other things • :View of Condition Impact: his cancer is no longer the focus of family life, it used to be the first thing that we thought about every day • Family Life Difficulty: his cancer doesn’t get in the way of our relationships; however as he attempts to assert his independence we struggle like any other family.

20. Tim’s Story Continues • Condition Management Effort: it doesn’t take as much time as active treatment, but, there are still scary times; last year he got encephalitis and it was a reminder of how fragile his life still is…a week or so later he returned to college—that was hard but the right thing to do • Condition Management Ability: the doctors and nurses know what is best about some things but we understand what he has been through and have ideas about how to best help him • Parental Mutuality: we are pretty much in sync although I am more protective then his father; we are able to set aside our differences when he has a problem

21. Family Management-Allison’s Family • Survivor’s Daily Life: her normal has changed since she had the brain tumor in ways that are consequential for her and for us; for instance, she is 21 years old and doesn’t go out with friends and doesn’t have a boyfriend • View of Condition Impact: a day doesn’t go by that Allison’s cancer isn’t a top concern to us in terms of worrying about late effects or waiting for the cancer to recur • Family Life Difficulty: Allison’s cancer has put a strain on family relationships; it is scary for me as her mother and a lot of responsibility that takes me away from care of my other children

22. Allison’s Story Continues • Condition Management Effort: Allison’s disabilities create a lot of work and we feel like we are on a rollercoaster • Condition Management Ability: I want to help her become more independent but don’t know how to do so; I feel that everything falls back on me to do and I wish Allison could do more for herself • Parental Mutuality: my husband and I don’t agree on the seriousness of Allison’s situation; I feel that my husband doesn’t listen to my concerns and my husband feels that I worry too much about her

24. Family Management “Clusters” in Our Current Research

25. Discussion: Practice and Research Implications Condition management effort and condition management ability are clearly important Parents of children with chronic conditions • Recent FaMM study (R01 NR08048 (Knafl) Parents of brain tumor survivors • This study (Oncology Nursing Society and the American Brain Tumor Foundation Deatrick & Hobbie]) • Current study (National Institute of Nursing Research (NINR); R01 NR00965 [Deatrick & Hobbie])

27. Visit our WWW site http://caregiverproject.securespsites.com/