The Acceptability, Feasibility, and Preliminary Effects of a Coping Intervention Program for Mothers

196 Pages·2014·1.97 MB·English

by  Gloanna Peek

The Acceptability, Feasibility, and Preliminary Effects

of a Coping Intervention Program for

Mothers of Children Newly Diagnosed with Cancer

by

Gloanna Peek

A Dissertation Presented in Partial Fulfillment
of the Requirements for the Degree
Doctor of Philosophy

Approved February 2014 by the
Graduate Supervisory Committee:

Bernadette Mazurek Melnyk, Chair
Leigh Small
Darya McClain

ARIZONA STATE UNIVERSITY

May 2014
ABSTRACT
There are approximately 12, 000 children diagnosed with cancer every year in the United
States. The diagnosis of childhood cancer impacts the entire family. Mothers of children
newly diagnosed with cancer often exhibit symptoms of stress, depression, and anxiety.
Also, children diagnosed with cancer often exhibit behavioral changes during and after
the treatment for childhood cancer. A synthesis of the current literature from a
comprehensive search demonstrates an urgent need for larger theory-based randomized
controlled trials (RCTs) with attention control groups for parents of newly diagnosed
children with cancer in order to improve both their own and their children’s
coping/mental health outcomes. The purpose of this pilot study was to determine the
impact of a theory-based manualized intervention to improve the mental health/coping
outcomes of mothers of children newly diagnosed with cancer and their children. The
primary aim of this pilot study was to assess the feasibility (timing, format, and length),
acceptability (content and general acceptability) and preliminary effects of a three-phase
manualized educational/skills building intervention with mothers of children newly
diagnosed with cancer (i.e., COPE-PCC). Outcome measures included maternal
depression and anxiety, and internalizing and externalizing behaviors in the child with
cancer. Maternal beliefs about their ability to parent a child with cancer was a proposed
mediator for this study. The total sample for this pilot study included 15 mothers of
children aged 2 to 8 years old diagnosed with cancer. Mothers reported significant
decreases in depression and anxiety and an increase in their beliefs about their ability to
parent their child with cancer after completion of the intervention. In addition, mothers
reported a decrease in negative behavioral symptoms in their children (i.e., externalizing
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and internalizing behaviors) after completion of the intervention. These findings support a
need to provide mothers psychosocial support soon after their children’s cancer diagnosis as
well as refine the intervention and test both its short- and long-term effects in a full-scale
RCT with mothers of children newly diagnosed with cancer.

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DEDICATION
This dissertation is dedicated to my mother who has supported me in every
endeavor.

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ACKNOWLEDGMENTS
I have been blessed with the mentorship of very knowledgeable, dedicated, and
caring individuals during my educational journey. It is with gratitude and deep respect
that I acknowledge them for their guidance and assistance in helping me complete this
journey. Dr. Bernadette Mazurek Melnyk, chair of my dissertation committee and mentor
who has motivated me with her constant energy, knowledge, and dedication. I have truly
had character building moments taking “one bite of the elephant at a time.” Dr. Leigh
Small, committee member and expert educator and clinician and constant source of
support. Dr. Darya McClain, committee member and expert statistician. Your dedication
and expertise has guided my course and is evident in your work in improving health
outcomes in children and their families.
I want to think the pediatric oncology team including Laura Hagerty who helped
with recruitment at Diamond Children’s Medical Center.
To Ozzie Hunter, RN, MSN who acted as study coordinator at Cardinal Glennon
Children’s Medical Center. Your support and work helped me complete this study.
Peter Hokanson, whose expertise, meticulous proofing and support, has resulted
in this final product.

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TABLE OF CONTENTS
Page
LIST OF TABLES ............................................................................................................. xi
LIST OF FIGURES ......................................................................................................... xiii
CHAPTER
1 INTRODUCTION .....................................................................................................1
Background and Significance ...............................................................................5
Impact of the Cancer Diagnosis on the Mother ................................................5
Impact of the Cancer Diagnosis on the Child ...................................................7
Child Behaviors ................................................................................................7
Purpose of the Proposed Study and Research Questions ......................................8
Primary Aim .....................................................................................................9
Research Question 1 ....................................................................................9
Secondary Aims ...............................................................................................9
Research Question 2 ....................................................................................9
Research Question 3 ....................................................................................9
Theoretical Framework .........................................................................................9
Importance of Theory to Guide Intervention Research ....................................9
Self-Regulation Theory ..................................................................................11
Control Theory ...............................................................................................14
Operationalization of Theoretical Framework ....................................................15
Mediating Variables ............................................................................................16
Outcome Variables..............................................................................................17
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CHAPTER Page
Maternal Outcome Variables ..........................................................................18
Depression..................................................................................................18
Anxiety .......................................................................................................18
Maternal Belief in Their Parenting Role ....................................................19
Children Outcome Variables ..........................................................................20
Internalizing Behaviors ..............................................................................20
Externalizing Behaviors .............................................................................21
Significance of the Proposed Research ...............................................................22
Impact on Clinical Practice ............................................................................22
Impact on Health Policy .................................................................................23
Summary .............................................................................................................24
2 BACKGROUND LITERATURE ...........................................................................25
Literature Review on Coping Interventions for Parents of Children
with Cancer .........................................................................................................25
Results .................................................................................................................25
Sample.................................................................................................................26
Setting .................................................................................................................26
Recruitment and Retention .................................................................................26
Intervention Content and Duration .....................................................................27
Timing of the Interventions ................................................................................28
Validity ...............................................................................................................28
Use of Theoretical Framework in Prior Intervention Studies .............................29
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CHAPTER Page
Measures of Intervention Fidelity .......................................................................29
Outcome Variables Measured .............................................................................29
Timing of Outcome Measures ............................................................................30
Major Findings ....................................................................................................32
Parents’ Responses to the Cancer Diagnosis of Their Child ..............................34
Young Children’s Behavioral and Emotional Responses to Illness ...................34
3 METHODOLOGY ..................................................................................................36
Study Aims..........................................................................................................36
Study Design .......................................................................................................36
Setting .................................................................................................................37
Sample.................................................................................................................37
Rationale for Inclusion/Exclusion Criteria .........................................................38
Recruitment and Retention .................................................................................38
Intervention Protocol Overview ..........................................................................40
COPE-PCC Intervention .....................................................................................41
COPE-PCC Sessions ......................................................................................41
Session 1 of COPE-PCC ............................................................................41
Session 2 of COPE-PCC ............................................................................42
Session 3 of COPE-PCC ............................................................................42
Measures .............................................................................................................43
Intervention Feasibility Measures ..................................................................43
Attendance Log ..........................................................................................43
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CHAPTER Page
Attrition Log ..............................................................................................43
Intervention Acceptability Measures ..............................................................44
Fidelity of the Intervention .................................................................................44
Delivery of the Intervention ...........................................................................45
Timing and Dose of the Intervention .............................................................46
Receipt of Intervention/Manipulation Checks ...............................................47
Variables and Measures ......................................................................................47
Independent Variables ....................................................................................48
Demographic Variables ..................................................................................48
Dependent Variables ......................................................................................48
Depression Symptoms ...............................................................................48
Anxiety Symptoms.....................................................................................49
Child Internalizing and Externalizing Behaviors .......................................50
Theoretical Mediating Variable ......................................................................51
Evaluation of the Intervention and Protocol: Feasibility and Acceptability .......52
Data Collection ...................................................................................................53
Procedures ......................................................................................................53
Data Management ...............................................................................................53
Data Analysis ......................................................................................................54
Data Reduction of Questionnaires ..................................................................54
Analysis Plan for Research Question 1 ..........................................................55
Analysis Plan for Research Question 2 ..........................................................56
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CHAPTER Page
Analysis Plan for Research Question 3 ..........................................................56
4 RESULTS ................................................................................................................57
Psychometrics .....................................................................................................57
Description of Participants ..................................................................................59
Mother Demographics ....................................................................................59
Child Demographics .......................................................................................61
Research Question 1 and Results ........................................................................63
Intervention Fidelity .......................................................................................68
Delivery of the Intervention .......................................................................68
Receipt of the Intervention.........................................................................68
Research Question 2 and Results ........................................................................69
Research Question 3 and Results ........................................................................73
5 DISCUSSION .........................................................................................................76
Summary of Findings ..........................................................................................76
Feasibility ............................................................................................................76
Acceptability ..................................................................................................77
Demand ..........................................................................................................78
Implementation ...............................................................................................78
Practicality ......................................................................................................79
Adaptation ......................................................................................................80
Integration ......................................................................................................80
Expansion .......................................................................................................81
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