1. family and parenting

_[
CALIFORNIA STATE UNIVERSITY SAN MARCOS
PROJECT SIGNATURE PAGE
PROJECT SUBMITTED IN PARTIAL FULLFILLMENT
OF THE REQUIREMENTS FOR THE DEGREE
MASTER OF SCIENCE
IN
NURSING
PROJECT TITLE:
Exploring Stress Levels Experienced by Parents of Children with Acute Lymphoblastic
Leukemia
AUTHOR:
Hailee Anne Demere
DATE OF SUCCESSFUL DEFENSE: 17 April 2015
THE PROJECT HAS BEEN ACCEPTED BY THE PROJECT COMMITTEE IN
PARTIAL FULLFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF
MASTER OF SCIENCE IN NURSING .
Dr. Pamela Kohlbry
PROJECT COMMITTEE CHAIR
,_
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PROJECT COMMITTEE MEMBER
PROJECT COMMITTEE MEMBER
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17 April 15
SIGNATURE
~ ~~
DATE
17 Apri115
SIGNATURE
DATE
SIGNATURE
DATE
Exploring Stress Levels Experienced by Parents of Children with
Acute Lymphoblastic Leukemia
A Research Grant Proposal
Presented to the faculty of the School of Nursing
California State University San Marcos
Submitted in partial satisfaction of
the requirements for the degree of
MASTER OF SCIENCE
in
Nursing
Family Nurse Practitioner
by
Hailee Anne Deméré
SPRING
2015
© 2015
Hailee Anne Deméré
ALL RIGHTS RESERVED
Student: Hailee Anne Demere
I certify that this student has met the School of Nursing format requirements, and that this project is
suitable for shelving in the Library and credit is to be awarded for the project.
------.
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Graduate Coordinator
Dr.Amy
School ofNursing
College of Education, Health, and Human Services
California State University San Marcos
17 April2015
Date
Student: Hailee Anne Demere
I certify that this student has met the School ofNursing format requirements, and that this project is suitable for shelving
in the Library and credit is to be awarded for the project.
------------------------' Director
Dr. Denise Boren
School ofNursing
College of Education, Health, and Human Services
California State University San Marcos
17 April2015
Date
Abstract
of
Exploring Stress Levels Experienced by Parents of Children with Acute Lymphoblastic Leukemia
by
Hailee Anne Demere
In the United States approximately 3,500 children are diagnosed with acute lymphoblastic leukemia
(ALL) each year (Horton & Steuber, 2012). With a considerable amount of families being affected by ALL
annually there is a substantial need to understand how this affects the parents of these children. There have been
numerous studies in reference to families dealing with childhood cancers. However, few studies have addressed
the topic of parenting a child with ALL and the challenges that arise during this difficult time (Long &
Marsland, 2011). More importantly of the reports on parenting a child with ALL, only a few explore the
experience from the father's perspective.
The purpose of this study is to explore paternal and maternal stress levels on parents who are parenting a
child with ALL that is undergoing treatment and to explore possible parental gender differences in coping with
the stress of parenting a child with ALL undergoing treatment. This study uses the theoretical framework of
Richard Lazarus and Susan Folkman's (1984) theory of stress, appraisal, and coping to explore the experience
of parenting a child with ALL.
The research questions explored in this study will be: (1) Is there is a difference in stress levels reported
by the mothers and fathers of a child undergoing treatment for ALL? and (2) "To determine if the demographic
variables of the child's age, the child's gender, time since diagnosis, and parent's gender explain the different
parenting experiences when parenting a child with ALL?
d2 ./:J7}Ja) }4/•~mmitteeChair
Dr. Pamela Kohlbry
s/1 j;;_olsI
Date
U
DEDICATION
I would like to dedicate this work to Cash McGuire who has been the inspiration for this proposed study.
ACKNOWLEDGEMENTS
I would like to acknowledge my family Bryan, Tom, Deanne and Evan for all your support and love over these
trying years.
I would like to thank my committee, Dr. Pamela Kohlbry and Professor Deborah Bennett for all you time a
guidance that have made me the nurse practitioner I am today.
Table of Contents
Exploring Stress Levels Experienced by Parents of Children with Acute Lymphoblastic Leukemia ................... 1
Abstract ......................................................................................................................................................... 5
Dedication ..................................................................................................................................................... 6
Acknowledgements........................................................................................................................................ 6
Grant Application .......................................................................................................................................... 9
Research Grant ................................................................................................................................................ 13
Table of Contents ............................................................................................................................................ 13
Detailed Budget For Initial Budget Period.................................................................................................... 14
Direct Costs Only ............................................................................................................................................ 14
Budget for Entire Proposed Project Period Direct Costs Only .......................................................................... 15
CHAPTER ONE: INTRODUCTION............................................................................................................. 8
Background................................................................................................................................................ 8
Significance to Nursing ............................................................................................................................ 10
The Problem ............................................................................................................................................ 11
Purpose of the Research ........................................................................................................................... 11
Research Questions .................................................................................................................................. 12
Research Variables................................................................................................................................... 12
Assumptions ............................................................................................................................................ 12
CHAPTER TWO: LITERATURE REVIEW ............................................................................................... 13
Introduction ............................................................................................................................................. 13
Discussion ............................................................................................................................................... 14
Major Variables Defined .......................................................................................................................... 16
Theoretical Framework ............................................................................................................................ 18
Summary ................................................................................................................................................. 19
CHAPTER THREE: METHODOLOGY ..................................................................................................... 20
Introduction ............................................................................................................................................. 20
Research Aim .......................................................................................................................................... 20
Research Questions .................................................................................................................................. 20
Identification of Setting............................................................................................................................ 20
Research Design ...................................................................................................................................... 21
Population and Sample ............................................................................................................................. 21
Measurement Methods ............................................................................................................................. 23
Data Collection Process ........................................................................................................................... 24
Coding and Scoring.................................................................................................................................. 25
Data Analysis ........................................................................................................................................... 26
Bias ......................................................................................................................................................... 27
Ethical Considerations ............................................................................................................................. 28
Dissemination Plan .................................................................................................................................. 29
Potential Grant Funds............................................................................................................................... 30
Summary ................................................................................................................................................. 30
Appendix A ................................................................................................................................................... 7
Appendix B ................................................................................................................................................. 33
Appendix C ................................................................................................................................................. 35
Appendix D ................................................................................................................................................. 36
Appendix E .................................................................................................................................................. 38
Appendix F .................................................................................................................................................. 39
Form Approved Through 8/31/2015
OMB No. 0925-0001
LEAVE BLANK—FOR PHS USE ONLY.
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1. TITLE OF PROJECT (Do not exceed 81 characters, including spaces and punctuation.)
Exploring Stress Levels Experienced by Parents of Children with Acute Lymphoblastic Leukemia
2. RESPONSE TO SPECIFIC REQUEST FOR APPLICATIONS OR PROGRAM ANNOUNCEMENT OR SOLICITATION
(If “Yes,” state number and title)
Number:
NO
YES
Title:
3. PROGRAM DIRECTOR/PRINCIPAL INVESTIGATOR
3a. NAME (Last, first, middle)
3b. DEGREE(S)
Demere, Hailee, Anne
RN
BSN
3h. eRA Commons User Name
MSN
3d. MAILING ADDRESS (Street, city, state, zip code)
3c. POSITION TITLE
Researcher
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School of Nursing, California State University San Marcos
179 South Upas Street
Escondido, CA 92025
3f. MAJOR SUBDIVISION
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TEL:
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FAX:
4. HUMAN SUBJECTS RESEARCH
No
E-MAIL ADDRESS:
4a. Research Exempt
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No
4b. Federal-Wide Assurance No.
Yes
4c. Clinical Trial
No
5. VERTEBRATE ANIMALS
If “Yes,” Exemption No.
No
4d. NIH-defined Phase III Clinical Trial
Yes
No
Yes
Yes
5a. Animal Welfare Assurance No.
6. DATES OF PROPOSED PERIOD OF
SUPPORT (month, day, year—MM/DD/YY)
7. COSTS REQUESTED FOR INITIAL
BUDGET PERIOD
8. COSTS REQUESTED FOR PROPOSED
PERIOD OF SUPPORT
From
7a. Direct Costs ($)
8a. Direct Costs ($)
Through
9. APPLICANT ORGANIZATION
Name
California State University,
Address
7b. Total Costs ($)
8b. Total Costs ($)
10. TYPE OF ORGANIZATION
San Marcos, CA
333 South Twin Oaks Valley Road
San Marocs, CA 92096
Public:
→
Federal
Private:
→
Private Nonprofit
For-profit: →
Woman-owned
General
State
Local
Small Business
Socially and Economically Disadvantaged
11. ENTITY IDENTIFICATION NUMBER
DUNS NO.
Cong. District
12. ADMINISTRATIVE OFFICIAL TO BE NOTIFIED IF AWARD IS MADE
Name
Dr. Denise Boren
13. OFFICIAL SIGNING FOR APPLICANT ORGANIZATION
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Dean of Nursing
Title
Address
333 South Twin Oaks Valley Road
San Marocs, CA 92096
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SIGNATURE OF OFFICIAL NAMED IN 13.
the statements herein are true, complete and accurate to the best of my knowledge, and
(In ink. “Per” signature not acceptable.)
accept the obligation to comply with Public Health Services terms and conditions if a grant
is awarded as a result of this application. I am aware that any false, fictitious, or fraudulent
statements or claims may subject me to criminal, civil, or administrative penalties.
PHS 398 (Rev. 08/12)
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Use only if preparing an application with Multiple PDs/PIs. See http://grants.nih.gov/grants/multi_pi/index.htm for details.
Contact Program Director/Principal Investigator (Last, First, Middle): Demere, Hailee, Anne
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3. PROGRAM DIRECTOR / PRINCIPAL INVESTIGATOR
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3b. DEGREE(S)
3h. NIH Commons User Name
3c. POSITION TITLE
3d. MAILING ADDRESS (Street, city, state, zip code)
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PHS 398 (Rev. 08/12 Approved Through 8/31/2015)
Face Page-continued
OMB No. 0925-0001
Form Page 1-continued
Program Director/Principal Investigator (Last, First, Middle):
Demere, Hailee, Anne
PROJECT SUMMARY (See instructions):
In the United States approximately 3,500 children are diagnosed with acute lymphoblastic leukemia (ALL)
each year (Horton & Steuber, 2012). With a considerable amount of families being affected by ALL annually
there is a substantial need to understand how this affects the parents of these children. There have been
numerous studies in reference to families dealing with childhood cancers. However, few studies have
addressed the topic of parenting a child with ALL and the challenges that arise during this difficult time (Long
& Marsland, 2011). More importantly of the reports on parenting a child with ALL, only a few explore the
experience from the father’s perspective.
The purpose of this study is to explore paternal and maternal stress levels on parents who are parenting a
child with ALL that is undergoing treatment and to explore possible parental gender differences in coping
with the stress of parenting a child with ALL undergoing treatment. This study uses the theoretical framework
of Richard Lazarus and Susan Folkman’s (1984) theory of stress, appraisal, and coping to explore the
experience of parenting a child with ALL.
The research questions explored in this study will be: (1) Is there is a difference in stress levels reported by
the mothers and fathers of a child undergoing treatment for ALL? and (2) “To determine if the demographic
variables of the child’s age, the child’s gender, time since diagnosis, and parent’s gender explain the
different parenting experiences when parenting a child with ALL?
RELEVANCE (See instructions):
PROJECT/PERFORMANCE SITE(S) (if additional space is needed, use Project/Performance Site Format Page)
Project/Performance Site Primary Location
Organizational Name:
DUNS:
Street 1:
Street 2:
City:
Province:
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Project/Performance Site Congressional Districts:
Additional Project/Performance Site Location
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PHS 398 (Rev. 08/12 Approved Through 8/31/2015)
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OMB No. 0925-0001
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Program Director/Principal Investigator (Last, First, Middle):
Demere, Hailee, Anne
SENIOR/KEY PERSONNEL. See instructions. Use continuation pages as needed to provide the required information in the format shown below.
Start with Program Director(s)/Principal Investigator(s). List all other senior/key personnel in alphabetical order, last name first.
Name
eRA Commons User Name
Organization
Role on Project
Demere, Hailee,
CSUSM
Lead Researcher
Kohlbry, Pamela
Bennett, Deborah
CSUSM
CSUSM
Chair
Member
OTHER SIGNIFICANT CONTRIBUTORS
Name
Human Embryonic Stem Cells
Organization
No
Role on Project
Yes
If the proposed project involves human embryonic stem cells, list below the registration number of the specific cell line(s) from the following list:
http://stemcells.nih.gov/research/registry/eligibilityCriteria.asp. Use continuation pages as needed.
If a specific line cannot be referenced at this time, include a statement that one from the Registry will be used.
Cell Line
PHS 398 (Rev. 08/12 Approved Through 8/31/2015)
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OMB No. 0925-0001
Form Page 2-continued
Number the following pages consecutively throughout
the application. Do not use suffixes such as 4a, 4b.
Program Director/Principal Investigator (Last, First, Middle):
Demere, Hailee, Anne
The name of the program director/principal investigator must be provided at the top of each printed page and each continuation page.
RESEARCH GRANT
TABLE OF CONTENTS
Page Numbers
Face Page ............................................................................................................................................
Description, Project/Performance Sites, Senior/Key Personnel, Other Significant Contributors,
and Human Embryonic Stem Cells .....................................................................................................
Table of Contents ................................................................................................................................
Detailed Budget for Initial Budget Period...........................................................................................
Budget for Entire Proposed Period of Support.........................................................................................
Budgets Pertaining to Consortium/Contractual Arrangements ........................................................
Biographical Sketch – Program Director/Principal Investigator (Not to exceed four pages each) .........
Other Biographical Sketches (Not to exceed four pages each – See instructions) ..............................
Resources............................................................................................................................................
Checklist ..............................................................................................................................................
1
2-3
4
5
6-8
31
Research Plan .....................................................................................................................................
1. Introduction to Resubmission Application, if applicable, or Introduction to Revision Application,
if applicable * .................................................................................................................................
2.
3.
4.
5.
Specific Aims * ...............................................................................................................................
Research Strategy * .......................................................................................................................
Inclusion Enrollment Report (Renewal or Revision applications only) ...............................................
Bibliography and References Cited/Progress Report Publication List ...............................................
6. Protection of Human Subjects .........................................................................................................
7. Inclusion of Women and Minorities ..................................................................................................
8. Targeted/Planned Enrollment Table ................................................................................................
9.
10.
11.
12.
Inclusion of Children ........................................................................................................................
Vertebrate Animals..........................................................................................................................
Select Agent Research ....................................................................................................................
Multiple PD/PI Leadership Plan .......................................................................................................
13. Consortium/Contractual Arrangements ............................................................................................
14. Letters of Support (e.g., Consultants) ..............................................................................................
15. Resource Sharing Plan (s) ..............................................................................................................
Check if
Appendix is
Included
Appendix (Five identical CDs.)
* Follow the page limits for these sections indicated in the application instructions, unless the Funding Opportunity Announcement
specifies otherwise.
PHS 398 (Rev. 08/12 Approved Through 8/31/2015)
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OMB No. 0925-0001
Form Page 3
Program Director/Principal Investigator (Last, First, Middle):
Demere, Hailee, Anne
FROM
DETAILED BUDGET FOR INITIAL BUDGET PERIOD
DIRECT COSTS ONLY
THROUGH
List PERSONNEL (Applicant organization only)
Use Cal, Acad, or Summer to Enter Months Devoted to Project
Enter Dollar Amounts Requested (omit cents) for Salary Requested and Fringe Benefits
NAME
ROLE ON
PROJECT
Lead Researcher
Cal.
Mnths
Acad.
Mnths
Summer INST.BASE
Mnths
SALARY
SALARY
REQUESTED
FRINGE
BENEFITS
TOTAL
PD/PI
36
68,000
204,000
RA
36
35,000
105,000
Research Assistant
SUBTOTALS
309,000
CONSULTANT COSTS
Biostatistician, will help data analysis, provide 40 hours/$100.00/hr
4,000
EQUIPMENT (Itemize)
SUPPLIES (Itemize by category)
SPSS software, postage, printing costs, professional poster, poster stand, poster travel tube, file
cabinet with a lock, and envelopes
3,990
TRAVEL
The STTI convention will cost $2,922 and the ASPHO conference will cost $2,196.
5,118
INPATIENT CARE COSTS
OUTPATIENT CARE COSTS
ALTERATIONS AND RENOVATIONS (Itemize by category)
OTHER EXPENSES (Itemize by category)
Participants will be given $40.00 for each survey completed; 84 children: 168 parents, 5 survey
per parent.
33,600
CONSORTIUM/CONTRACTUAL COSTS
DIRECT COSTS
SUBTOTAL DIRECT COSTS FOR INITIAL BUDGET PERIOD (Item 7a, Face Page)
$
355,708
$
355,708
FACILITIES AND ADMINISTRATIVE COSTS
CONSORTIUM/CONTRACTUAL COSTS
TOTAL DIRECT COSTS FOR INITIAL BUDGET PERIOD
PHS 398 (Rev. 08/12 Approved Through 8/31/2015)
Page 5
OMB No. 0925-0001
Form Page 4
Program Director/Principal Investigator (Last, First, Middle):
Demere, Hailee, Anne
BUDGET FOR ENTIRE PROPOSED PROJECT PERIOD
DIRECT COSTS ONLY
BUDGET CATEGORY
TOTALS
PERSONNEL: Salary and fringe
benefits. Applicant organization
only.
INITIAL BUDGET
PERIOD
(from Form Page 4)
2nd ADDITIONAL
YEAR OF SUPPORT
REQUESTED
103,000
103,000
3rd ADDITIONAL
4th ADDITIONAL
5th ADDITIONAL
YEAR OF SUPPORT YEAR OF SUPPORT YEAR OF SUPPORT
REQUESTED
REQUESTED
REQUESTED
CONSULTANT COSTS
103,000
4,000
EQUIPMENT
SUPPLIES
2,070
655
TRAVEL
1,065
5,118
INPATIENT CARE
COSTS
OUTPATIENT CARE
COSTS
ALTERATIONS AND
RENOVATIONS
OTHER EXPENSES
11,200
11,200
11,200
116,270
114,055
124,383
DIRECT CONSORTIUM/
CONTRACTUAL
COSTS
SUBTOTAL DIRECT COSTS
(Sum = Item 8a, Face Page)
F&A CONSORTIUM/
CONTRACTUAL
COSTS
TOTAL DIRECT COSTS
TOTAL DIRECT COSTS FOR ENTIRE PROPOSED PROJECT PERIOD
$
355,708
JUSTIFICATION. Follow the budget justification instructions exactly. Use continuation pages as needed.
The cost of the research design will be $355,177 based on costs associated with conducting the
research, recruiting participants, data analysis, and dissemination of the findings. The lead researcher will
work on the proposed study for three years at an annual salary of $68,000 (payscale, 2015). The total cost of
the lead researcher’s salary would be $204,000. A research assistant will be hired to approach potential
participants, to follow up with the consenting participants, and to help with data entry. The average research
assistance costs $35,000 per year (payscale, 2015). It is estimated that a research assistant will be needed for 3
years. The total cost of a research assistant would be $105,000. The average hourly rate for a biostatistician is
$100.00. It is estimated that a biostatistician will be needed for one week, with a total cost for the
PHS 398 (Rev. 08/12 Approved Through 8/31/2015)
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OMB No. 0925-0001
Form Page
biostatistician equaling $4,000. Biostatistician will be needed during the data analysis stage of the research
project. Parental participants will be given $40.00 for each survey they complete and mail back. Because 84
children are proposed for this study, 168 parents will be needed. Over the 3 year period of the study each
parental participant will complete 5 surveys each. A total of $33,600 will be requested for this purpose. The
STTI convention will cost $2,922, which includes the cost of the conference ($379), airfare ($178), hotel
($2,015) and food spending ($350). The ASPHO conference will cost $2,196, which includes the cost of the
conference registration ($695), airfare ($221), hotel ($1,000), and food spending ($280). Other miscellaneous
costs will include SPSS software ($1,140), postage ($837), printing costs ($1,640), professional poster ($120),
poster stand ($60), poster travel tube ($30), file cabinet with a lock ($75), and envelopes ($90).
Program Director/Principal Investigator (Last, First, Middle):
Demere, Hailee, Anne
CHAPTER ONE: INTRODUCTION
In the United States approximately 3,500 children are diagnosed with acute lymphoblastic
leukemia (ALL) each year (Horton & Steuber, 2012). With a considerable amount of families
being affected by ALL annually there is a substantial need to understand how this affects the
parents of these children. When ALL is factored into the already stressful role of being a parent,
the added stress can be crippling and can leave parents feeling overwhelmed. Childhood
leukemia is one of the most common causes for malignancy in children under the age of 15, with
the highest incidence occurring between 2 and 3 years of age (Charalambous, 2012). There have
been numerous studies in reference to families dealing with childhood cancers. However, few
studies have addressed the topic of parenting a child with ALL and the challenges that arise
during this difficult time (Long & Marsland, 2011). More importantly of the reports on parenting
a child with ALL, only a few explore the experience from the father’s perspective.
The purpose of this study is to explore paternal and maternal stress levels on parents who are
parenting a child with ALL that is undergoing treatment and to explore possible parental gender
differences in coping with the stress of parenting a child with ALL undergoing treatment. This
study uses the theoretical framework of Richard Lazarus and Susan Folkman’s (1984) theory of
stress, appraisal, and coping to explore the experience of parenting a child with ALL.
Background
Leukemia is a malignancy of the white blood cells, and is associated with the failure of the
cells to mature, which leads to the accumulation of a large amount of immature white blood cells
in the bone marrow (Meenaghan, Maura, & Kelly, 2012). This condition prevents the normal
production of platelets, red blood cells, and white blood cells and can lead to a decreased
immune system, anemia, and thrombocytopenia (Meenaghan et al., 2012). The survival rate for
PHS 398 (Rev. 08/12 Approved Through 8/31/2015)
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Program Director/Principal Investigator (Last, First, Middle):
Demere, Hailee, Anne
childhood leukemias has improved since the 1950s. In the 1950s the prognosis for children
diagnosed with ALL was extremely poor (McGrath, 2002). However, in recent years the
remission rate is over 90% due to medical advances (Hunger et al., 2012). Being a parent of a
child with ALL can be overwhelming for many reasons and the parents tend to feel they are on a
“roller coaster ride” for the duration of the child’s treatment. Families’ new way a living starts
with the diagnosis of ALL. Initially, the parents might feel relief in finally knowing what is
causing their child to be sick. However, at the same time they might be feeling anxious to find
out their child’s category level of risk (standard-risk, high-risk, or very high-risk). Placement in
either the standard risk or high risk category is based on age at diagnosis and white blood cell
count at diagnosis (Schultz et al., 2007). The category will guide the treatment regime. The first
phase of the treatment course for ALL includes remission induction, typically lasting 4 weeks,
after which point complete remission is achieved (National Cancer Institute, 2008). Once
complete remission is achieved the consolidation phase of treatment is started and includes 1 to 2
months of chemotherapy, with the degree of medication intensity based on the category
(National Cancer Institute, 2008). The third phase of treatment is called maintenance therapy and
involves continued chemotherapy (National Cancer Institute, 2008). The total course of
treatment lasts 2 to 3 years, based on how the cancer is responding to treatment (National Cancer
Institute, 2008).
Families coping with this long treatment period find themselves struggling with their alwayschanging emotions and feelings (McGrath, 2002). Advanced practice nurses (APN) can become
a substantial part of the families’ new life. The health care team (i.e. doctors, APN, nurses, and
social workers) has a profound impact on the family’s ability to handle this stressful time in
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Program Director/Principal Investigator (Last, First, Middle):
Demere, Hailee, Anne
family’s lives by understanding what these families are experiencing. Understanding this will
make the healthcare team more effective in providing care.
Another aspect of childhood ALL that makes life more stressful is that little is known about
what exactly causes ALL. This often leaves parents feeling guilty or responsible for their child’s
diagnosis. This can make it even more difficult for parents to deal with the their child’s diagnosis
of ALL. On top of these overwhelming feelings, day to day responsibility for the treatment
regime for ALL is passed on to the parents to complete at home, by administering chemotherapy
to their child (Kars, Duijnstee, Pool, Delden, & Grypdonck, 2008). Therefore, not only is the
parent of a child with ALL facing the increased stress and difficult challenges of parenting a
child with ALL, they also have to adopt the role of a home health care provider. All of these
stressors can lead parents to feel overwhelmed and emotionally drained.
Significance to Nursing
The child’s first year of treatment is often the most stressful for parents because the child’s
health condition is at its worst and the intensity of treatment interventions and caregiver demands
is at its highest (Klassen et al., 2011). This is when the healthcare team needs to be most aware
of how the parents are dealing with the stress of parenting a child with ALL and they need to be
available to give extra support if the parents needs it. In the role of an APN it is important to
understand the parent’s experience of parenting a child with ALL in order “to be there” (i.e.,
guide, support, and educate) for the parents who in turn need to “be there” (i.e., encourage, love,
support, and advocate) for their child. Not only does an APN provide nursing care to the child,
but also to the family. In the end, all the published findings indicate that parents need a
considerable amount of emotional support in order to deal with the stress of parenting a child
with ALL (McGrath, 2002). In a research article by Klassen et al. (2011) psychosocial services
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are recognized as an important component of comprehensive cancer care for parents. If a parent
does not receive appropriate support, then the stress of parenting a child with cancer can
negatively affect the parent’s health status (Klassen et al., 2011).
As stated by Svavarsdottir (2005) research has shown that children’s emotions and behaviors
are influenced by their parent’s adjustment to the illness situation. This makes it even more
important for the APN to support and to help the parents understand what to expect in the
upcoming years in order for the sick child to participate willingly in the treatment regime.
“Parents indicated that people supporting them should acknowledge this very difficult journey in
life” (McGrath, 2002). It is important for an APN to offer support to the parents and how one
goes about providing that support is even more important. In reviewing the literature, it seems to
be clear that gaining insight into this difficult time for parents will help the healthcare team
provide the appropriate care to both the child and his/her parents (Patistea, 2004).
The Problem
Parents of children with ALL undergo many stressors and it has been shown that if a parent
does not receive appropriate support, the parent’s health status can be negatively affected
(Klassen et al., 2011). It has also been shown that children of maladjusted parents can have
behavior problems, which will affect the child’s willingness to participate in treatment regimes.
In the current literature there is little to no research exploring the parental stress of parenting a
child with ALL, especially from the perspective of the father (Klassen et al., 2011).
Purpose of the Research
The purpose of the proposed research study is to explore the stress levels of parenting a child
with ALL and explore the perspective of the father in order to identify if there is a difference in
paternal and maternal stress levels that occur during the course of treatment for ALL. In addition,
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this study will explore if time since diagnosis has an impact on the level of stress reported by
parents, with possible differences in levels of stress experienced by the fathers and mothers.
Research Questions
The research questions explored in this study will be: (1) Is there is a difference in stress
levels reported by the mothers and fathers of a child undergoing treatment for ALL? and (2) “To
determine if the demographic variables of the child’s age, the child’s gender, time since
diagnosis, and parent’s gender explain the different parenting experiences when parenting a child
with ALL?
Research Variables
The dependent variable in this study will be the parent’s perceived stress level of parenting a
child with ALL as evaluated by the Parental Experience of Child Illness (PECI) Scale. The
independent variables in this study will be the parent’s gender. The demographic variables will
be the gender of the child, the age of the child, the time since diagnosis, the parent’s work
location, the parent’s employment status, and the role of the primary caregiver.
Assumptions
The assumptions that will be made in this study are that: 1) The parents will fill out the
questionnaires; 2) The parents will fill out the questionnaires honestly and separately; 3) The
parents will be available for the duration of the study; and 4) The researcher will be able to
accurately measure the parent’s stress level resulting from parenting a child with ALL.
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CHAPTER TWO: LITERATURE REVIEW
Introduction
A literature review was performed to explore published research on stress levels of parents
who are parenting a child with ALL and to discover gaps in the current literature. A variety of
methods were employed to find relevant articles on the concept of parenting a child with ALL.
The primary method utilized multiple on-line search engines including CINAHL Plus with Full
Text, PudMed, Google scholar, and UpToDate. The key terms used in the searches were
“childhood leukemia,” “parenting a child with leukemia,” “stress of parenting a child with
leukemia,” and “parenting a child with cancer.” Although over a thousand articles were returned
from the initial searches, only 37 were selected for a more in-depth review. These 37 articles
were selected based on whether the terms “parents,” “family,” “stress,” or “caregiver of
childhood leukemia/cancer” were in the title. Ten of these 37 articles were initially eliminated
because they were published more than 15 years ago and were not specific to children with
cancer. This reduced the number of potential research articles to 27. The final selection was
based on whether the article focused on the parent’s stress levels, on parental gender differences,
or on coping in the face of parenting a child with leukemia/cancer. This produced a final
selection of 16 articles for review.
Another method employed to find relevant research articles was to use the reference lists
included at the end of the selected articles. Some trends were discovered using this search
method. For example, many of the relevant articles cited dated back to the 1990s, which further
highlights the fact that current research is limited on the subject of parenting a child with
leukemia/cancer. It was also discovered that many articles cited the same references. However,
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these articles were not included in the final article selection in order to highlight the need for
current research.
Discussion
Research has suggested that there may or may not be gender differences in how each parent
experiences the stress of parenting a child with cancer. The research by Svavarsdottir (2005)
found that mothers had to balance behavioral problems with planning activities for the family,
while fathers had to balance work with giving emotional support to the sick child, other children,
and their wife. Also, fathers found it difficult to manage, coordinate, and arrange services and
resources. The gender differences described by Svavarsdottir (2005) concluded that the mother’s
most stressful caregiving tasks revolved around the family and coordinating family affairs, while
the father’s most stressful caregiving tasks revolved around work and coordinating work affairs.
Interestingly, Kars et al. (2008) found that mothers prefer to be the parent with the ill child the
majority of the time and fathers were okay leaving the everyday tasks of being with the ill child
to the mother versus the other way around. This may explain the differences in gender role stress
experienced by mothers and fathers. However, the research by Clarke, McCarthy, Downie,
Ashley & Anderson (2009) found that mothers were more likely to give up work due to
increased caregiving demands, while fathers felt more effective in being the provider for the
family. This also may explain the differences in gender role stress experienced by mothers and
fathers.
In a study by Yeh (2002), it was found that mothers and fathers differed in their levels of role
stress. Mothers reported higher levels of general stress than fathers. The studied by Clarke et al
(2009) also found higher levels of stress experienced by mothers than fathers. However, Bonner,
Hardy, Willard, & Hutchinson (2007) found that mothers and fathers experienced similar levels
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of stress. There also might be a gender difference when parents experience increased levels of
stress. Fathers reported higher parenting stress when their child was having active treatment and
mothers reported higher levels of stress when their child completed treatment (Radcliffe,
Bennett, Kazak, Foley, & Phillips, 1996). Interestingly, one article reported that parents of
children with cancer experienced similar levels of stress when compared to a control group of
parents without sick children (Long & Marsland, 2001). Yet another article found that the initial
stage of treatment was highly stressful both mothers and fathers (McGrath, 2002). These
discrepancies in the perceived stress levels between fathers and mothers in the reviewed research
studies further highlights the need for additional research on the topic of parenting a child with
ALL.
There also seems to be a gender difference in the way parents cope with parenting a child
with leukemia. In the study by Patistea (2004), fathers often used alcohol, food, drugs, driving
alone, and focusing on work as the primary methods for coping with the stress. These coping
mechanisms are described as avoidance, denial, and emotional withdrawal as stated by Patistea
(2004). An article by Von Essen, Sjoden, & Mattsson (2004), found that mothers suffered more
than fathers from symptoms of depression, anxiety, hopelessness, and psychosomatic symptoms.
Mothers also may experience more psychological distress than fathers early in the treatment
schedule, but after 18 to 20 months of treatment psychological distress was equal between
mothers and fathers (Sloper, 2000). Research is very limited in determining if there is a gender
difference in stress levels that parents experience when parenting a child with ALL over the
course of treatment and suggests that further longitudinal studies are needed.
Often times there are reports by families of children with ALL that a shift in role
responsibilities occurs (McGrath, 2001). In the majority of these studies the mother was in the
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role as primary caregiver for the sick child while the father assumed the role of the providing
income and also picking up some of the roles the mothers could no longer accomplish. In the
study by McGrath (2001), the father’s new roles included: picking up siblings from school,
taking siblings places, domestic skills (i.e. doing laundry, grocery shopping, cooking), and
providing the only income. This highlights the change in the family’s roles that occurs when
parents are parenting a child with ALL. Several articles mention the transition that occurs as
families adjust to the “new normal,” which involves living as a split family, with mothers in the
hospital with the sick child and father at work, managing the household, and caring for the sick
child’s siblings (Kazak & Barakat, 1997; McGrath, 2001; Eiser, Eiser, & Greco, 2002; Earle,
Clarke, Eiser, & Sheppard, 2006; Clarke, et al., 2009). However, Bonner et al. (2007) found that
there are better psychosocial outcomes (i.e. family, maternal, and marital function) when both
the mother and father were involved in the care of the ill child.
Therefore, further research is needed on parenting a child will ALL. Since it is clear that in
the current literature focuses on parenting a child with cancer, there is a gap in the literature of
the perspective from fathers and the possible gender difference in stress levels of parenting a
child with ALL. In addition, the inconsistency that exists within the current literature regarding
the impact on gender and role stress, further emphasizes the need for future research on the topic
of stress and gender differences in parenting a child with ALL.
Major Variables Defined
Demographic variables.
The demographic variables that will be analyzed during this study include both parent and
child data. Gender of the child will refer to whether the child is male, female, or other. The age
of the child will refer to the actual chronological age of the child in years. The time since
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diagnosis will refer to the time before, during, or after treatment, which will be defined as, Time
1 (before treatment is started), Time 2 (initiation of treatment), Time 3 (start of consolidation
phase), Time 4 (completion of maintenance), and Time 5 (3 months after completion of
treatment). The parent’s work location will refer to the place the parent works (home, outside the
home, mixed, none). The parent’s employment status will refer to job requirements of the parents
(unemployed, full time employment, part time employment). Primary caregiver will refer to the
number of hours an individual parent spends with the child each day.
Other demographic data will also be collected in order to account for possible additional
variables not anticipated at the start of the research design. These additional demographics are
listed as follows. Parent’s age will refer to the chronological age of the parents. Parent’s race will
refer to the participants self-report of their ethnic background (Caucasian, African American,
Hispanic, Asian, Other). Parent’s education level will refer to the participants’ highest level of
formal education (high school graduate, some college, associate’s degree, bachelor’s degree,
master’s degree, doctorate degree). Parent’s length of marriage refers to length of time the couple
has been married (5 years or less, 5 to 10 years, 10 to 15 years, more than 15 years). Parent’s
household income will refer to the amount of money the participants’ household makes a year
($25,000 or less, $25,000 to $50,000, $50,000 to $75,000, $75,000 to $100,000 and $100,000 or
more). The number of children refers to the number of children living in the household. Child’s
race refers to the child’s ethnic background (Caucasian, African American, Hispanic, Asian,
Other). The treatment status refers to the status of medical treatment for the child (on or off).
Emotional support refers to status of seeing a counselor for emotional distress.
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Stress.
The term stress used in this study follows the definition by Lazarus and Folkman (1984), “the
relationship between the person and the environment that is appraised by the person as taxing or
exceeding his or her resources and endangering his or her well-being.” In this study stress will be
measured with the Parent Experience of Childhood Illness Scale (PECI). The PECI questionnaire
(Appendix D) will be used to measure the parent’s subjected distress and emotional resources
(Bonner et al., 2006).
Theoretical Framework
The transactional model of Lazarus and Folkman (1984) will be used to guide this study.
Lazarus and Folkman’s model describe stress as neither solely in the environment nor solely in
the person, but rather as a product of the interplay between environmental demands and personal
reactions. In this model there is a transaction between the person and his or her environment, in
which a “consequence at time 1 can become an antecedent at time 2; and the cause can be either
in the person or in the environment” (Lazarus & Folkman, 1984). The two main processes
described in the model are cognitive appraisal and coping (Folkman, Lazarus, Dunkel-Schetter,
DeLongis, & Gruen, 1986). These factors are critical mediators of stress in the relationship
between a person and their environment. The person-environment relationship as described by
Lazarus and Folkman (1984) includes factors like personality, beliefs, values, social networks,
commitments, social support, demands, constraints, and life events.
Cognitive appraisal involves the process in which a person evaluates if an event within their
environment is relevant to their well-being, and if so, in what ways (Folkman et al., 1986).
Furthermore, there are two levels of appraisal, primary and secondary. Primary appraisal
involves a person’s perception of whether he or she has anything at stake in the encounter
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(Folkman et al., 1986), while secondary appraisal involves a personal evaluation as to whether
anything can be done to overcome or prevent harm or to improve the prospects for benefit
(Folkman et al., 1986). After a person appraises the encounter, the person hopefully will cope
with the situation.
Lazarus and Folkman (1984) define coping as the “person’s constantly changing cognitive
and behavioral efforts to manage specific external and/or internal demands that are appraised as
taxing or exceeding the person’s resources.” In addition Lazarus and Folkman (1984) point out
that coping is a process that has three key features: (1) What the person actually does; (2) The
particular context; and (3) How what is done changes as the stressful encounter unfolds.
Summary
Parents face a long and trying few years when they find out their child has been diagnosed
with ALL. Little research has been conducted as to whether fathers and mothers cope with the
diagnosis in the same fashion. It is proposed that a study be conducted to establish if there is a
paternal or maternal difference in coping with the stress of parenting a child with ALL. Guiding
this study will be the theoretical framework established by Lazarus and Folkman (1984). In this
framework a parent will be asked to appraise the encounter of having a child with ALL as either
being a threat or not and the parent will hopefully use the process of coping to deal with the
stress. If coping is adequate, then the parent will be able to continue on with life effectively and
the child will ultimately benefit. In studying this topic the findings will be applied to advanced
practice nursing in order to inform advance practice nurses to better help parents cope with the
trials and stress that come from parenting a child with ALL.
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CHAPTER THREE: METHODOLOGY
Introduction
This chapter provides a detailed explanation of the study setting, the study design, the study
population, the sampling techniques, the data collection process, the data analysis, any bias of the
study, and the ethical considerations of the proposed study. This proposal is for a longitudinal
repeated measures study that will explore gender differences between how mothers and fathers
appraise their level of stress during the life event of parenting a child with ALL. In addition, the
study will explore the impact that time since diagnosis has on the level of stress reported by
parents, with possible differences in levels of stress experienced by mothers and fathers.
Research Aim
The aim of this study is to establish if there is a difference in paternal and maternal stress
experienced during the course of treatment of their child with ALL.
Research Questions
The research questions explored in this study will be: (1) Is there is a difference in stress
levels reported by the mothers and fathers of a child undergoing treatment for ALL? and (2) To
determine if the demographic variables of the child’s age, the child’s gender, time since
diagnosis, and parental gender explain the different parenting experiences when parenting a child
with ALL?
Identification of Setting
The setting for this study will be at multiple children’s hospital in southern California.
Potential parental participants in the study will be approached during one of their child’s regular
clinic visits, if the child is in the initiation phase of treatment.
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Research Design
A quantitative study design will be conducted longitudinally with five repeated measures
with the intent to establish if there is a difference in paternal and maternal stress during the
course of treatment for ALL. The longitudinal design with 5 repeated measures was chosen for
this type of research study because the researcher wants to “collect data at more than one point in
time over an extended period of time” (Polit & Beck, 2012). In the proposed study, this design
will be used to explore paternal and maternal stress levels from parents parenting a child with
ALL undergoing treatment and to explore possible gender differences in dealing with the stress
of parenting a child with ALL undergoing treatment.
Eligible participants will be English-speaking families of children newly diagnosed and in
treatment for childhood leukemia. In order to involve enough participants in this study, the study
will be conducted over a 3-year period. The parents will sign a consent form and complete a
demographic survey during the initial contact with parents that want to participate. They will
also be given a packet consisting of the PECI Scale and a prepaid addressed envelope. The
parents will be given the same questionnaire and a prepaid addressed envelope at five points in
time: Time 1 (before treatment is started), Time 2 (initiation of treatment), Time 3 (start of
consolidation phase), Time 4 (completion of maintenance), and Time 5 (3 months after
completion of treatment).
Population and Sample
The sample population for this proposed study will be a convenience sample of parents with
children with ALL seeking treatment for their child at selected hospital sited in southern
California. The target population will include 70 children (based on an annual report of the
number of children living in southern California divided by the incidence rate of ALL)
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(FindTheDate, 2009). A research assistant will approach the parents during one of their child’s
regular clinic visits and explain the goals of the study and extend an invitation to participate.
During this initial contact period the research assistant will provide the parents with a flyer
(Appendix A) inviting them to participate and summarizing the proposed study and if they
choose to participate the informed consent (Appendix B). All the participants will need to be able
to read and speak English, must have a child newly diagnosed (before the start of treatment) with
childhood ALL, and be between 2 to 5 years of age (most common age for diagnosis with ALL)
(National Cancer Institute, 2008). In addition, the child must be in the standard-risk group in
order to ensure there is sample commonalty, and both mother and father must be willing to
participate in the study. Informed consent forms will be collected from interested parents at the
initial contact with the eligible family.
The target population size needed for this proposed study was computed to be 70 children.
However, the inclusion criterion that has been selected for this study (English speakers, nuclear
family, both parents willing to participate, etc) has the potential to create problems in achieving
the desired study population size at a single hospital or clinic site. Therefore, multiple children
hospital sites will be approached in order to screen enough potential parents to reach the target
population size. The target population size was calculated using the G power 3.1 computer
software (See Appendix C). The population effect size was calculated based on an effect size of
0.2 in an analysis of variance (ANOVA) with a power of 0.80 with the level of significance set at
0.05. Due to the nature of this study, an additional 40% was added due to the possibility of
attrition (loss of participants over time) (Polit & Beck, 2012). Therefore, the initial sample size
actually needed to conduct this proposed study will be 84 children, instead of 70. The sample
size was computed using the ANOVA instead of the multiple regression analysis because the
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results of the ANOVA produced a large enough sample size to complete the multiple regression
analysis as well. With the multiple regression analysis the effect size was 0.15, with an alpha of
0.05, and power of 0.80 with 6 variables.
Measurement Methods
The method of measuring parent’s stress levels during the course of parenting a child
undergoing treatment for ALL for this proposed study will involve use of a PECI stress
questionnaire and a demographic form. The demographic form will include: parent’s age,
parent’s race, parent’s education level, parent’s household income, parent’s marital status,
parent’s work location, parents employment status, identity of primary caregiver, number of
children in household, child’s age, child’s gender, child’s race, time since diagnosis, and
treatment status. The stress questionnaire that will be used during this study is the PECI Scale
(Appendix D); a 25-item Likert-type scale that measures the parent’s illness specific adjustment
to their child’s serious or chronic illness (Bonner et al., 2006). The researcher was able to obtain
the PECI Scale from the original researcher (Appendix D) with permission to use the PECI Scale
to conduct research (Appendix F).
Parent experience of child illness (PECI) scale.
The PECI Scale was developed by a multidisciplinary team that generated from the literature,
a preliminary list of 60-items relevant to parenting a child with chronic illness (Bonner et al.,
2006). The items on the preliminary list pertained to chronic sorrow, uncertainty, and emotional
resources (Bonner et al., 2006). After administering the 60-item questionnaire to a small sample
of parents of children with cancer, the questionnaire was reduced to a more focused 25-item
questionnaire due to the finding that 35 items were either not “specific to the chronic illness
experience, not likely to elicit variable responses among parents, or not applicable to parents of
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survivors” (Bonner et al., 2006). The final version of the PECI Scale includes questions only
pertaining to illness-related items that describe difficulties with chronic sorrow, uncertainty,
subjective parenting distress, and emotional resources (Bonner et al., 2006). The questionnaire is
administered as a self-report, paper-pencil measure written at the 4th grade reading level, with
each item rated on a five-point Likert-type scale as follows: 0, “Never”; 1, “Rarely”; 2,
“Sometimes”; 3, “Often”; and 4, “Always” (Bonner et al., 2006).
To provide validity, the PECI Scale shows significant, positive correlations when compared
with other scales established for measuring parent adjustment (Bonner et al., 2006). Internal
reliability for the PECI Scale was determined using the Cronbach’s α. Under this test, the
reliability was adequate for the PECI Scale ranging from 0.72 to 0.89, suggesting acceptable
reliability (Bonner et al., 2006). To evaluate for construct validity, Pearson product-moment
correlation was used. The alpha level was set using the Bonferroni adjustment (Bonner et al.,
2006). A p value was set for less than or equal to 0.004 and was used to correlate between the
PECI scale and other scales that assess parental adjustment (Bonner et al., 2006).
Data Collection Process
Prior to collecting data on human subjects, approval from the Institutional Review Board
(IRB) at California State University San Marcos (CSUSM) will to be obtained for the proposed
study. The researchers will then meet with the individual hospital researcher teams to discuss the
study and obtain approval from the each hospital’s IRB. Once approval by the IRBs at both
CSUSM and the different hospitals has been granted, potential participants will be approached at
one of their child’s regular clinic visits at the hospital clinic. Written consent will be obtained
and the demographics form will be filled out during their child’s clinic visits. The participants
will be provided with the PECI questionnaire and a prepaid addressed envelope. The participants
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will be instructed to fill out the questionnaire at home, approximately one week after the clinic
visit and return the questionnaire by mail in the prepaid addressed envelope. Follow-up mailed
reminders will be made to consenting participants from whom the questionnaire was not received
within a specified time (about two weeks). A second, third, fourth, and fifth questionnaire with a
prepaid addressed envelope will be mailed to the participants at Time 2 (initiation of treatment),
Time 3 (start of consolidation phase), Time 4 (completion of maintenance), and Time 5 (3
months after completion of treatment) for the parents to complete. Follow-up mailed reminders
will be made to the consenting participants from whom the questionnaire was not received within
a specified time (about two weeks). If the participant has a strong emotional reaction to the
questionnaire they will be instructed to access the resources available to them at the hospital or
clinic where their child is receiving care. Children hospitals and clinics have specially trained
social workers or life coaches that are available to families in need of help, including emotional
support.
Coding and Scoring
The PECI Scale will be scored following procedures developed by the author of the tool
(Bonner et al., 2006). The PECI Scale is scored by adding all the items in each subscale and
dividing the sum by the number of items in the subscale (Bonner et al., 2006). The subscales of
the PECI Scale are as follows: guilt and worry has 11 items (3, 6, 7, 10, 13, 14, 16, 20, 22, 24,
25), unresolved sorrow and anger has 8 items (1, 2, 12, 15, 17, 19, 21, 25), long-term uncertainty
has 5 items (1, 4, 8, 9, 18), and emotional resources has 5 items (2, 5, 11, 14, 23) (Bonner et al.,
2006). See Appendix E for a more detail scoring procedure as formulated by the original
researcher (Bonner et al., 2006).
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Data Analysis
The computer software that will be used to analyze the data collected during this research
study will be Statistical Package for the Social Sciences (IMB-SPSS-20). The analyses will
consist of descriptive statistics, frequency distribution, bivariate correlation, multiple regression
using the F-test, and repeated measures analysis of variance (RM-ANOVA). The level of
significance will be set to p less than or equal to 0.05.
Descriptive statistics.
Descriptive statistics is a method of describing and synthesizing data, and is expressed as
averages and percentages (Plichta & Kelvin, 2013). The level of measurements that will be used
in the analysis of data will include nominal measurements (gender, marital status, etc.) and
interval measurements (PECI results which are based on a 4-point Likert scale). The descriptive
statistics will be used to establish the mean, median and mode for each question.
Frequency distribution.
Frequency distribution is a systematic way of organizing numeric data of values from lowest
to highest, with a count of the number of times each value was obtained (Polit & Beck, 2012). In
this proposed study the results generated from the PECI Scale will be used for the frequency
distribution and expressed in a histogram format. The shape of the histogram will be used to help
determine what types of additional statistical tests to use.
Bivariate correlation.
Bivariate correlation will be used to describe if there is a relationship between two variables.
For the proposed research study the two variables that the researcher is trying to establish a
relationship for gender role and stress level as measured by the PECI Scale. In order to establish
this relationship the two variables will be described through correlation (Polit & Beck, 2012).
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Multiple regression.
The multiple regression model will be used during this proposed study to evaluate the
demographic variables. The multiple regression model is used when there is more than one
predictor variable (Plichta & Kelvin, 2013). This model “allows the researcher to consider the
effects of several independent variables on one dependent variable of interest simultaneously”
(Plichta & Kelvin, 2013). The multiple regression model will be used to test the question “How
do the demographic variables of the child’s age, the child’s gender, and time since diagnosis
explain the parenting experience when parenting a child with ALL?”
Repeated measures ANOVA.
The repeated measures analysis of variance (RM-ANOVA) “is a procedure for testing
differences between means when there are three or more groups” (Plichta & Kelvin, 2013). This
statistical test is computed with the F-ratio (Plichta & Kelvin, 2013). This test was chosen to
analyze the data because the researcher wants to test more than one variable with a group of
parents. The RM-ANOVA is the preferred test to use in this situation because it “controls for the
between-subjects variance by removing it from the error term and measures it separately”
(Plichta & Kelvin, 2013).
Bias
When conducting a research study the researcher needs to be aware of possible biases. A bias
is “an influence that produces a distortion or error in the study results” (Polit & Beck, 2012).
Bias can occur as a result of a number of different factors. Examples of possible bias in the
design of this study include sampling bias, sample imbalance, and the researchers personal
emotional attachment to children with ALL.
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Sampling.
A convenience sample will be used to obtain participants for the study. A convenience
sample is obtained by “using the most conveniently available people as participants” (Polit &
Beck, 2012). In this study participants will be approached at one of their child’s regular clinic
visits at a children’s hospital in southern California. Bias can be created in obtaining participants
in this fashion because the people who are available or willing to participate in the study might
be atypical of the population in regards to critical variables (Polit & Beck, 2012).
Sample imbalance.
Sample imbalance occurs when the sample itself is biased (Polit & Beck, 2012). In this study
a sample imbalance might occur because parents of children with leukemia that are experiencing
distress, or are not coping well, might be too overwhelmed to even participate in the study.
Therefore, the parents that are participating might be functioning better and consequently their
response on the questionnaires might not be a fair representation of how all parents of children
with leukemia function.
Emotional attachment.
The lead researcher of this proposed study has a personal emotional attachment to a child
with ALL. Therefore the lead researcher will not discuss her personal experiences with ALL
with the potential participants, or the research assistant. In not disclosing the lead researchers
personal attachment to ALL the potential participants and the research assistant with not become
biased.
Ethical Considerations
Prior to conducting this research study the researcher will secure approval from the CSUSM
and the each of the selected hospital’s IRB. However, a number of ethical considerations need to
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be explored before obtaining IRB approval, including the following: participants cannot be
subjected to any harm; there can be no participant coercion; participants must have the right to
refuse to participate in the study; and participants must not be deceived in anyway (Polit & Beck,
2012). To guard against a breach of these ethical considerations the research assistant will be
instructed to ask the potential participant if they feel free to refuse to participate and if they
understand what they are agreeing to partake in.
Informed consent will be obtained from each participant prior to the participant being
allowed to take part in the study. Certain measures will be taken to ensure participant privacy.
These measures will include coding the questionnaires to ensure that no participant information
is on the questionnaire and ensuring that completed surveys are kept in a locked cabinet at the
researcher’s office. In order to keep the participants’ information concealed, a coding system will
be put in place. Under this system, when the surveys are handed out the participant will be given
a number that correlates with the survey envelope. For example, the participant’s demographic
form and subsequent PECI Scale questionnaires will be coded by number. As the surveys come
in the data will be entered into a spreadsheet correlated with each coded number but not with the
participant’s name.
Dissemination Plan
After the research study has been conducted and the data is reviewed, the researcher plans to
publish the findings in few peer-reviewed journals. One of the journals will be the Journal of
Pediatric Oncology Nursing, which is a peer reviewed journal that provides original research that
intends to advance clinical nursing care of children and adolescents with cancer and blood
disorders. Another journal is the Journal of Pediatric Hematology/Oncology, which reports on
major advances in treatment of children with cancer and blood disorders. Two additional journals
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will include the Journal of Clinical Oncology and the Journal for Nurse Practitioners, which also
focus on cancer advances and current ANP practice. Also the researcher plans to present the
findings at the Sigma Theta Tau International (STTI) Biennial Convention. STTI has a biennial
convention during the month of November. The researcher will attend this convention and
present the research findings in an oral symposium format. In addition the researcher will attend
the American Society of Pediatric Hematology/Oncology (ASPHO) Annual Meeting, which are
held in the month of May. At the ASPHO meeting the researcher will have a poster presentation
to present the research findings.
Potential Grant Funds
In order to fund this grant multiple applications will be submitted to various granting
agencies. The largest grant available is a government funded grant under the Maternal and Child
Health Pediatric Research Network Program, with a maximum award of $200,000. This
organization is looking for research studies that aim to improve the health of children. Another
organization that funds grants for a research project of this nature is the National Association of
Pediatric Nurse Practitioners (NAPNAP). NAPNAP awards a grant of $2,500 each year for
studies that aim to advance nursing practice and children’s health. The American Nurses
Foundation is another agency that awards individual, one year grants in the range of $5,000 to
$30,000 for research that will advance nursing science in all areas of nursing including family
intervention. The Society of Pediatric Nurses is another granting agency that will be approached
when looking for funding for this proposed study.
Summary
The purpose of this grant study is to understand the stress level of parenting a child
undergoing treatment for ALL, to establish whether there is a difference between paternal and
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maternal stress, and to also explore if time since diagnosis or treatment status affects parental
stress. To evaluate parental stress the PECI Scale will be used and analyzed using the multiple
regression model and RM-ANOVA tests. The theoretical framework of stress, appraisal, and
coping established by Lazarus and Folkman (1984) will be used to guide the research study. The
goal of this research study is to gain a broader understanding of the stress level of parenting a
child undergoing treatment for ALL. Advanced practice nurses will use this information to
enhance practice and foster better patient and family outcomes. The knowledge gained can be
used to develop tools, to better education parents on what to expect and how to better cope with
stressors that occur during diagnosis and treatment. The knowledge gained can also be used by
the APN to become a better advocate for both parents and children dealing with ALL.
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Appendix A
Exploring parental
stress
when your child has
acute lymphoblastic
leukemia
Help us learn how to help parents cope so
we can better help you.
A research study is looking for parents of
children with acute lymphoblastic leukemia
to assess parental stress and coping.
Participants will receive $40.00
for each of 5 questionnaires completed over
the 3 year period of this study.
If you are interested in
participating call
Hailee Deméré
760-420-7574
[email protected]
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Appendix B
CONSENT TO PARTICIPATE IN RESEARCH
California State University San Marcos
The purpose of this r research study, conducted by Hailee Demere, is to explore the stress levels
experienced by parents of children undergoing treatment for acute lymphoblastic leukemia. The goal of
this study is to explore paternal and maternal stress levels on parents who are parenting a child with ALL
that is undergoing treatment and to explore possible parental gender differences in coping with the stress of
parenting a child with ALL undergoing treatment.
Requirement of Participation
You will be asked to complete five questionnaire surveys at five different points in time throughout your
child’s treatment for acute lymphoblastic leukemia.
Risks and Safeguards
There are minimal to no risks to you and your child for participating in this study. You may feel you do not
have time to participate, you may be worried that the subject matter will stir up emotions, or you may be
concerned about the confidentiality of your answers.
To ensure confidentiality, no personal identifying data will be kept, questionnaires will be coded, and all
data will be kept in a locked cabinet for 3 years. Only the lead researcher and research assistant will have
access to the anonymous data.
Benefits and Incentives
While you will receive no direct benefit from this study, the data that is collected from this study will be
used to enhance knowledge for advanced practice nurses when supporting families with children
undergoing treatment for acute lymphoblastic leukemia.
As an incentive for participating in this study, you will receive $40.00 for each of five questionnaire
surveys completed.
Voluntary Participation
Participating in this study is completely voluntary. If you chose not to participate there will be no
consequences of any kind. If you chose to participate but change your mind you can withdraw at any time.
Contact Information
If you have any questions about the research study, you are free to ask them now. If in the future you have
additional questions, please contact the lead researcher at (760) 420-7574. If you have any questions about
your rights as a research participant, you may contact our Institutional Review Board at (760) 750-5029.
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 I am at least 18 years old and I agree to participate in this research study.
____________________________________
Participant’s Name
Date
____________________
____________________________________
Participant’s Signature
____________________________________
Research Assistant’s Signature
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Appendix C
G power analysis
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Appendix D
©
Parent Experience of Childhood Illness Scale (PECI) – Short Form
This questionnaire is concerned with thoughts and feelings related to parenting a child who is living with, or has experienced, a
chronic illness. Read each statement and then try to determine how well it describes your thoughts and feelings over the past
month.
NEVER
RARELY
SOMETIMES
1. It is painful for me to think about what my
child might have been like had s/he never gotten
sick.
0
1
2
3
4
2. I am at peace with the circumstances of my
life.
0
1
2
3
4
3. I feel guilty because my child became ill while
I remained healthy.
0
1
2
3
4
4. I worry about my child’s future.
0
1
2
3
4
5. I feel ready to face challenges related to my
child’s well being in the future.
0
1
2
3
4
6. I worry that I may be responsible for my
child’s illness in some way.
0
1
2
3
4
7. I worry that at any minute, things might take a
turn for the worse.
0
1
2
3
4
8. I worry about whether my child will be able to
live independently as an adult.
0
1
2
3
4
9. I have regrets about decisions I have made
concerning my child’s illness.
0
1
2
3
4
10. I think about whether or not my child will
die.
0
1
2
3
4
11. I am aware of the specific ways I react to
sadness and loss.
0
1
2
3
4
12. I experience angry feelings when I think
about my child’s illness.
0
1
2
3
4
13. I am afraid of this diagnosis occurring in
another member of my immediate family.
0
1
2
3
4
14. I trust myself to manage the future, whatever
happens.
0
1
2
3
4
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ALWAYS
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15. I find it hard to socialize with people who
don’t understand what being a parent to my child
means.
0
1
2
3
4
16. When my child is playing actively, I find
myself worried that s/he will get hurt.
0
1
2
3
4
17. I believe I will never be as completely happy
or satisfied with my life as I was before my child
became ill.
0
1
2
3
4
18. My hopes and dreams for my child’s future
are uncertain.
0
1
2
3
4
19. I am jealous of parents who have healthy
children.
0
1
2
3
4
20. I worry that my child’s illness will worsen /
return.
0
1
2
3
4
21. Seeing healthy children doing everyday
activities makes me feel sad.
0
1
2
3
4
22. I worry about something bad happening to
my child when s/he is out of my care.
0
1
2
3
4
23. I can get help and support when I need it.
0
1
2
3
4
24. I wake up during the night and check on my
child.
0
1
2
3
4
25. When I am not with my child, I find myself
thinking about whether or not s/he is ok.
0
1
2
3
4
© 2006 The Preston Robert Tisch Brain Tumor Center at Duke, Duke University Medical Center
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Appendix E
Scoring for the PECI-Short Form©
Scoring Instructions: Sum all items in each subscale and divide by the number of items in the subscale. The
means and standard deviations from the original sample of pediatric brain tumor patients (n = 148) are included
for each scale. Further information about the psychometric properties of the measure may be found in Bonner,
M.J., Hardy, K.K., Guill, A.B., McLaughlin, C., Schweitzer, H., & Carter, K. (2006). Developmental and
validation of the Parent Experience of Child Illness. Journal of Pediatric Psychology, 31, p. 310-321.
Subscale
Item #
Note
Guilt & Worry
(11 items)
(M = 1.72, SD = .773)
3
6
7
10
13
14
reverse code, item on 2 subscales
16
20
22
24
25
item on 2 subscales
Unresolved Sorrow & Anger
(M = 1.51, SD = .820)
Long-term Uncertainty
(M = 1.97, SD = .867)
Emotional Resources
(M = 2.70, SD = .658)
(8 items)
1
item on 2 subscales
2
reverse code, item on 2 subscales
12
15
17
19
21
25
item on 2 subscales
1
4
8
9
18
(5 items)
item on 2 subscales
(5 items)
2
do not reverse-code, item on 2 subscales
5
11
14
23
© 2006 Duke University Health System
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Appendix F
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