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

2 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 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  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 Family stress and coping Role theory Family adaptation and family hardiness Systems theories Substantive theories developed via qualitative methods

6 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 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

Scale# of items Content Parents’ Perceptions of… Child’s Daily Life 5 child & his/her everyday life (higher values – more normal life despite condition) View of Condition Impact 10 seriousness of condition & its implications for child’s & family’s future (higher values-condition more serious) Family Life Difficulty 14 extent to which condition makes family life more demanding (higher values-life more difficult) Condition Management Effort 4 the time & work needed to manage the illness (higher values-greater work) Condition Management Ability 12 competence to take care of the child’s condition (higher values-more capable) Parental Mutuality (completed by partnered parents only) 8 support, shared views, & satisfaction with how couple works together to manage condition (higher values-greater satisfaction) 8 nursing.unc.edu/research/famm/

9 Hi Effort (Demand) Hi Ability (Competence) Hi Effort (Demand) Low Ability (Competence) Low Effort (Demand) Hi Ability (Competence) Low Effort (Demand) Low Ability (Competence)

10 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 Respondents: Mothers: 77% (17/22) Fathers: 23% (5/22) Demographics: Married: 86% (19/22) Biological parent of survivor: 100% (22/22) Age 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 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)

Family Management ScalesManifestations in Families of Brain Tumor Survivors Child’s Daily Life child & his/her everyday life (higher values – more normal life despite condition) Getting to know child’s abilities after treatment and helping the child get to know himself/herself View of Condition Impact-seriousness of condition & its implications for child’s & family’s future (higher values-condition more serious) Implications of brain tumor for future of child and family Family Life Difficulty- extent to which condition makes family life more demanding (higher values-life more difficult) Ability for family to balance their focus on ongoing family life with the needs of the survivor Condition Management Effort-the time & work needed to manage the illness (higher values-greater work) Amount of time and work needed to manage then during diagnosis and now during survivorship Condition Management Ability – competence to take care of the child’s condition (higher values-more capable) Overall ability to handle needs of the survivor over the long haul within the context of ongoing loss Parental Mutuality (completed by partnered parents only) -support, shared views, & satisfaction with how couple works together to manage condition (higher values-greater satisfaction) Relationships, shared views, mutual support; flexibility 13

Additional Finding 14 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

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TL, a 23 year old male Diagnosis: medulloblastoma at age 8 years. Treatment: surgery chemo & radiation Complications during therapy Off-therapy issues 16  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

17  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 Survivor’s Daily Life View of Condition Impact Family Life Difficulty Condition Management Effort Condition Management Ability Parental Mutuality

19 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  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 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 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

Perceptions of Parents… TimAllison Survivors Daily LifeMore “normal”Less “normal” View of Condition Impact Less “serious”More “serious” Family Life Difficulty Not particularly “difficult;” Doesn’t interfere More “difficult” Condition Management Effort Less “effort” now (low effort) More “effort” (High effort) Condition Management Ability High AbilityModerate Ability Parental MutualityHigh satisfaction (high mutuality) Low satisfaction (low mutuality) 23

24 Hi Effort (Demand) Hi Ability (Competence) Hi Effort (Demand) Low Ability (Competence) Low Effort (Demand) Hi Ability (Competence) Low Effort (Demand) Low Ability (Competence)

25 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])

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