Janet A. Deatrick, PhD, FAANUniversity of Pennsylvania School of Nursing

Associate Professor and Associate DirectorCenter for Health Disparities Research

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Exploring Family Management of

Childhood Brain Tumor Survivors

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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

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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)

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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

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Family stress and coping

Role theory

Family adaptation and family hardiness

Systems theories

Substantive theories developed via qualitative methods

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Well established instruments exist consistent with these

conceptual/ theoretical frameworks, measuring:

General family processes

Disease specific family management-asthma, cystic fibrosis,

and diabetes

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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)

8nursing.unc.edu/research/famm/

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Hi Effort (Demand)

Hi Ability (Competence)

Hi Effort (Demand)

Low Ability (Competence)

Low Effort (Demand)

Hi Ability (Competence)

Low Effort (Demand)

Low Ability (Competence)

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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

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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)

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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 Scales Manifestations 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

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Additional Finding

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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

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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

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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

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Survivor’s Daily Life

View of Condition Impact

Family Life Difficulty

Condition Management Effort

Condition Management Ability

Parental Mutuality

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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.

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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

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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

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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…

Tim Allison

Survivors Daily

Life

More “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 Ability Moderate Ability

Parental Mutuality High satisfaction (high

mutuality)

Low satisfaction (low

mutuality)

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Hi Effort (Demand)

Hi Ability (Competence)

Hi Effort (Demand)

Low Ability

(Competence)

Low Effort (Demand)

Hi Ability (Competence)

Low Effort (Demand)

Low Ability

(Competence)

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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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