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Futures in fertility

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Title:
Futures in fertility family factors and support needs of children with cancer and their families
Creator:
Rhoda, Jennifer L
Publication Date:
Language:
English
Physical Description:
x, 57 leaves : ; 28 cm

Subjects

Subjects / Keywords:
Cancer -- Treatment -- Complications ( lcsh )
Fertility, Human ( lcsh )
Cancer -- Patients -- Family relationships ( lcsh )
Cancer in children ( lcsh )
Cancer in children ( fast )
Cancer -- Patients -- Family relationships ( fast )
Cancer -- Treatment -- Complications ( fast )
Fertility, Human ( fast )
Genre:
bibliography ( marcgt )
theses ( marcgt )
non-fiction ( marcgt )

Notes

Bibliography:
Includes bibliographical references (leaves 54-57).
General Note:
Department of Psychology
Statement of Responsibility:
by Jennifer L. Rhoda.

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Source Institution:
|University of Colorado Denver
Holding Location:
|Auraria Library
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All applicable rights reserved by the source institution and holding location.
Resource Identifier:
319836378 ( OCLC )
ocn319836378
Classification:
LD1193.L645 2008m R46 ( lcc )

Full Text
FUTURES IN FERTILITY:
FAMILY FACTORS AND
SUPPORT NEEDS OF CHILDREN WITH CANCER AND THEIR FAMILIES
by
Jennifer L. Rhoda
B.A., University of Northern Colorado, 2006
A thesis submitted to the
University of Colorado Denver
in partial fulfillment
of the requirements for the degree of
Master of Arts
Clinical Psychology
2008


This thesis for the Master of Arts
degree by
Jennifer Rhoda
has been approved
by
Jeanelle Sheeder


Rhoda, Jennifer L. (M.A., Clinical Psychology)
Futures in Fertility: Family Factors and Support Needs of Children with Cancer and
their Families
Thesis directed by Research Assistant Professor Jennifer Hamed Adams
ABSTRACT
According to the American Society of Reproductive Medicine, nearly 10% of
American couples are considered infertile, which can be caused by anything from
hormonal to structural problems. However, a person may also become infertile as a
result of receiving treatment for cancer. The Futures in Fertility Program (FFP) is a
large pilot program looking to assess the information, support and reproductive health
care needs of adolescents with cancer and their families. Within the FFP, the current
study aims to look at factors related to the family, such as family structure, cohesion,
and level of distress, following a diagnosis of cancer and how that may relate to
mental health needs assessment outcomes i.e., for services such as individual, family
or group therapy. It was predicted that parents and patients from non-nuclear families
will report lower levels of cohesion compared to parents and patients from nuclear
families. As a result, it was predicted that parents and patients from non-nuclear
households would also desire greater support than parents and patients from nuclear
111


families. The study found patients of non-nuclear families reported significantly
lower levels of cohesion in their families compared to patients from nuclear families.
However, parents of non-nuclear families did not report lower cohesion compared to
parents of nuclear families. In addition, patients from non-nuclear families also
reported greater interest in receiving group therapy on the FFP Needs Assessment
Survey compared to patients from nuclear families. Unexpectedly, no difference in
interest of support options was found by gender. Implications for program
development and treatment planning based on family structure are discussed.
This abstract accurately represents the content of the candidates thesis. I recommend
its publication.
Signed
Kristin Kilboum


DEDICATION
I dedicate this thesis to my parents and grandmother, for bestowing a flame in me that
no matter how high the obstacles maybe if you have passion and motivation, you can
achieve anything.


ACKNOWLEDGEMENT
I would like to thank Jennifer Hamed Adams, Jeanelle Sheeder and Kristin Kilboum
for their encouragement, support and help with this thesis. Id also like to thank Anna
Cejka and the doctors and nurses at The Childrens Hospital for their help and
support.


TABLE OF CONTENTS
Figures.......................................................ix
Tables........................................................x
CHAPTER
1. INTRODUCTION...............................................1
Family structure and functioning........................2
Cohesion in the family and functioning..................4
The relationship between cancer and individual/family
functioning.............................................9
Gender and mental health...............................14
The Current Study......................................18
2. METHOD......................................................19
Participants...........................................19
Measures...............................................20
Family Adaptability and Cohesion Evaluation Scales (FACES-
IV).................................................21
The Depression Anxiety Stress Scale (DASS-21).......22
FFP Needs Assessment Survey.........................23
Procedure..............................................23
Data Analysis.........................................24
3. RESULTS.....................................................26
Vll


4. DISCUSSION...........................................38
Additional Future Directions.......................42
Limitations........................................43
APPENDIX
A. DASS-21..............................................46
B. FACES-IV.............................................48
C. FFP Needs Assessment Survey..........................52
REFERENCES....................................................54
via


LIST OF FIGURES
Figure
3.1 Total percentages of patients interest in support options combined across family
types......................................................................30
3.2 Total percentages of parents interest in support options combined across family
types......................................................................33
IX


LIST OF TABLES
Table
2.1 Demographic data for patients.........................................20
3.1 Mean scores and standard deviations on the cohesion dimension of the FACES-
IV of parents and patients of both nuclear and non-nuclear families...27
3.2 Percentages of nuclear and non-nuclear patients interest on the support options
Section of the FFP Needs Assessment Survey............................29
3.3 Percentages of nuclear and non-nuclear parents interest on the support options
section of the FFP Needs Assessment Survey............................32
3.4 Percentages of parents and patients interest on the support options section of the
FFP Needs Assessment Survey...........................................34
3.5 Mean scores of male and female patients on the DASS-21...............36
3.6 Normative means and raw scores for significant level of distress on the DASS-
21....................................................................37
x


CHAPTER 1
INTRODUCTION
Although not everyone plans on having children, the prospect of not being
able to make the choice to become a parent can be incredibly difficult. For most
people, finding out that they are infertile wont likely occur until they decide to start
having a family. However, many children and adolescents with cancer may learn at
very young age that they will never be able to have biological children. The idea of
being infertile can be very hard to cope with for both the patient, as well as the
family. Patients may seek support from their family, but due to a multitude of
reasons, such as a lack of cohesion in the family, receive little of the emotional
support that they need.
Research has shown that due to transitions in family structure such as divorce
or remarriage, some youth may have some difficulty functioning, socially and
emotionally. In particular, Barrett and Turner (2005) found nuclear families reported
lower levels of depressive symptoms than stepfamilies and single-parent households.
It is possible that dynamics occurring between family members and stress
experienced from these transitions may leave a child or adolescent with few people to
provide support and encouragement. As a result, children and adolescents receiving
1


little support from their families may experience difficulty coping with life stressor
such as cancer. Particularly, certain factors, such as family cohesion and parental
monitoring, have been found to be a protective factor against using negative coping
strategies such as illicit drug use (Kliewer, et al., 2006). Importantly, the impact of
family structure on psychological well-being does not only affect ones functioning in
childhood, but influences mental health over ones life span (as reviewed by Barrett
and Turner, 2005). Consequently, if factors such as family structure, cohesion and
flexibility within the family can be assessed at the earliest point possible during
treatment for cancer, those pediatric patients that are not receiving the support
necessary to cope with their illness can be referred to supportive care options. By
intervening and providing support at this pertinent time it maybe possible to help
alleviate problems before they become more difficult and costly to manage later in
life.
Family structure and functioning
When one thinks of a family, more likely than not, one will picture a mother, a
father and children. However, with the rate of first marriages ending in divorce at
approximately 50% (Kreider & Fields, 2002), this picturesque view of family no
longer fits with todays society. Studies have found that children may have poor
developmental outcomes due to transitions in their familys structure (Fomby &
Cherlin, 2007). The level of transitions in family structure and their effect on
2


childrens functioning was studied by Fomby and Cherlin (2007) using data from the
National Longitudinal Survey of Youth (NLSY) and Children of the NLSY. Clearly,
single parent households can be just as stable as two parent households. Thus, Fomby
and Cherlin (2007) define a stable family environment as one that does not require
that children adjust repeatedly to the loss of coresident parents or the introducing of
new parental partners (p. 182). This means that if a child was originally raised in a
single-parent household it is considered a stable family environment if the childs
household continues to be run by one parent (ie. no introduction of new parental
figures.)
Fomby and Cherlin (2007) found in their sample that nearly 80 percent of
children were bom into intact families, while at the time of the study, only 64 percent
of children were living with their biological parents. Caucasian children who
experienced multiple transitions in their familys structure were reported to exhibit an
increase in externalizing behaviors and a decrease in cognitive achievement based on
scores from the Peabody Individual Achievement Test (Fomby & Cherlin, 2007). In
particular, they found that Caucasian children who had three or more transitions in
their family structure had an approximately a 40 percent increase in delinquent
behavior (Fomby & Cherlin, 2007). However, multiple family transitions with
African American children were not associated with overall rates of externalizing
behavior or cognitive scores. Instead, Fomby and Cherlin (2007) found that for
African-American children their existing family structure was more predictive of their
3


well-being then their initial family structure. In particular, it was found that African
American children had an increase in externalizing behaviors and decreased cognitive
scores if they were living in a mother-only household at the time of the interview. The
study found a relationship for both Caucasian and African American children that
living in a mother-only household during their first 4 years of life were associated
with an increase in externalizing behaviors (Fomby & Cherlin, 2007). These studies
suggest that not having a stable family environment, as defined by Fomby and
Cherlin (2007), in the early years of a childs life is highly related to increases in
problematic behaviors later in childhood.
Cohesion in the family functioning
Guttman & Rosenberg (2003) investigated the relationship in divorced
families between emotional intimacy and childrens functioning. The emotional
intimacy within a family or the lack of intimacy is related to various terms from
Structure Family Therapy, such as enmeshment, disengagement, cohesion and
flexibility/adaptability. All of these terms relate to the quality of the boundaries
between members of a family. A family that is enmeshed provides members with a
high degree of support, but at the expense of independence and autonomy (Nichols
& Schwartz, 2006,104). Thus, members from enmeshed families may receive a great
deal of support from family members, but have difficulty coping independently.
Disengaged families can be overly restrictive and permit little contact with outside
4


subsystems (Nichols & Schwartz, 2006,174). Consequently, members from
disengaged families may have little to no outside support when faced with life
stressors, such as a cancer diagnosis.
In more cohesive families, there are open lines of communication, adequate
support, and flexibility in their ability to negotiate issues and to be open to change
(Olsen et al., 2006). Within the study, 108 mothers and 189 children were surveyed
with approximately half coming from divorced families and half from intact families
(Guttman et. al., 2003). Participants were given an inventory measuring members
emotional connectedness towards each other. Participant families also completed a
family sculpting exercise (Guttman et. al, 2003). In addition, the children were given
a personality assessment that measured both social and emotional functioning.
Overall, the divorced mothers were found to feel less emotionally intimate and
more disengaged with their children than married mothers (Guttman et. al, 2003).
Furthermore, children of intact or non-divorced families were found to do
significantly better academically and socially/emotionally based upon their GPA and
score on the California Test of Personality (Guttman et. al., 2003). Interestingly,
when the researchers examined the divorced group they found that the frequency of
father visits, emotional intimacy and the including of the father in the Kvebaek family
sculpture activity showed significant effects on the childs adjustment post divorce.
Therefore, children of divorced families fared better socially and emotionally when
the child had a close relationship with their father (Guttman et. al, 2003). One
5


potential explanation of these findings is that by maintaining strong ties with their
fathers after divorce, children might continue to receive a similar degree of support
from their parents prior to divorce, thus resulting in better adjustment to the new
family structure. However, Guttman et al. (2003) concluded that following divorce,
the boundaries and relationship that a child has with their father must be renegotiated.
This renegotiation is necessary with the parent whos parent role is most in need of
redefinition (Guttman et al, 2003, p. 470). In the case, that renegotiation occurs
between the nonresidential parent and child, the child is likelier to adjust better,
socially and emotionally following their parents divorce. Clearly, it is up to the
parents of divorced families to keep open lines of communication and remain
emotionally connected to members despite the dissolving of the marital dyad.
Another study examined the relationship between communication, family
structure, cohesion, socioeconomic status, ethnicity and their effects on family
relationships. Baer (1999) investigated whether differences in conflict levels existed
between ethnic groups as a function of family structure, gender, family cohesion and
communication with mother/father family. The researchers also examined
socioeconomic status by investigating two components, parental education level and
career. Only Mexican-American, African-American and Euro-American adolescents
were included in the analyses because participants that fell outside of those
backgrounds were considered too diverse to merge into a single group (Baer, 1999).
Investigators found no significant differences based on ethnicity in the amount of
6


conflict experienced within the family (Baer, 1999). The study found a significant
difference between single parent and dual parent families. Specifically, the single
parent households experienced greater conflict, less positive communication and a
lower degree of cohesion within the family (Baer, 1999). Although single mothers
reported that one of the main stressors was inadequate income, SES was not found to
be a significant. Consequently, if single parent families experience greater conflict
and lower cohesion in their family, parents as well as children may feel unsupported
when confronted with life stressors. As a result, this study intends on investigating if
pediatric cancer patients from single parent households may have greater needs for
mental health care and emotional support during and after cancer treatment.
Clearly, family structure has a significant influence on an individuals
development. The processes that occur within the family can also have an influence
on how well an individual is able to cope with life transitions or stressors. This lack
of autonomy or over-influence of the family on an individual is commonly referred to
as differentiation of self (Nichols & Schwartz, 2006). An individual who is
undifferentiated may have difficulty separating their thoughts from their
emotions/feelings, which then may affect their psychological functioning (Nichols &
Schwartz, 2006). Differentiation and the relationship to adolescent functioning were
studied by Manzi, Vignoles, Regalia, & Scabini (2006). The study investigated
adolescents in the United Kingdom and Italy and whether there were differences in
how cohesion and enmeshment affected functioning. According to Manzi et al.
7


(2006), psychological well-being of United Kingdom youths was found to
demonstrate similar relationships to cohesion and enmeshment compared to
adolescents in the United States (as cited in Barber & Buehler, 2006). A study by
Barber & Buehler (2006) they investigated whether cohesion and enmeshment were
two separate constructs. They found that adolescents from a sample in the United
States reporting either lower cohesion in the family or enmeshment had higher rates
of both internalizing and externalizing behaviors. In both Manzi et al. (2006) and
Barber & Buehler (1996), results showed that as cohesion increased, so did
psychological well-being, Since cohesion exists on a continuum, either extreme can
be considered unhealthy. For instance, a family that is disengaged has little to no
cohesion and a family that has too much cohesion to the point it can infringe on an
individuals autonomy. One then might assume that if an adolescent reported their
families as enmeshed, that they would also be experiencing lower psychological well-
being. Manzi et al. (2006) found no relationship for Italian youths with enmeshed
families and depressive symptoms. However, UK youths with enmeshed families
presented with more depressive symptoms. Therefore, depending on the culture that
is being studied there may be variability in the degree in which cohesion and
enmeshment can affect ones psychological well-being.
8


The relationship between cancer and individual/family functioning
Life stressors can have a huge impact on a persons life. In particular, the
stress that is related to being diagnosed with cancer can have ramifications on both
the lives of the patients, as well as their families. A lack of cohesion and flexibility in
the family has been associated with lower levels of psychological well-being (Manzi
et al. 2006). Consequently, for those families that lack cohesion and flexibility, it may
prove even more difficult to cope with the stress of a member being diagnosed with
cancer.
There are numerous ways that a persons life maybe affected by cancer.
Patients may experience considerable stress related to their diagnosis, treatment and
short/long term side effects. Furthermore, family members may also experience
considerable stress related to having to deal with the scheduling of treatment,
transportation and healthcare expenses. This continued stress on the part of the
patient, as well as the family can have possible implications on ones quality of life.
Eiser, Eiser & Stride (2006) investigated whether families of children diagnosed with
cancer experienced a reduction in their quality of life (QOL) following diagnosis and
treatment for cancer. Each of the families surveyed were approached following their
childs treatment when they were coming into the hospital as an outpatient and their
condition was stable. In the study, mothers completed surveys measuring their QOL,
well-being and their childs QOL. Investigators predicted mothers who rated their
QOL poorly, would also rate their childs QOL to be poor. In addition, they predicted
9


that a mother and childs QOL following treatment would be significantly lower
compared to the average population following diagnosis and treatment. Results
confirmed Eiser et al. (2006) hypotheses that following a childs cancer diagnosis
both mother and child experienced lower rates of QOL compared to the normal
population. In addition, mother and childs QOL ratings were found to be
significantly correlated to each other. A limitation to the study was that only mothers
completed the surveys since the average age of the child in the study was four years
of age. Therefore, it is necessary to assess the psychological effects of cancer on older
pediatric patients and their parents.
With the push in recent years to a more holistic approach to medicine and the
importance of addressing both mind and body, more studies now are investigating the
long-term psychological effects of cancer in childhood. In the Wiener, Battles,
Bernstein, Long, Derdak, Mackall & Mansky (2008) study, they conducted an
examination of the after effects of treatment for pediatric sarcoma. They examined
the levels of psychological distress in adult survivors of pediatric cancer (Wiener et.
al., 2008). Participants were assessed cross-sectionally for symptoms ranging from
Posttraumatic Stress Disorder to Depression. In addition, participants were asked
questions about the perceived effect of their cancer diagnosed had on their stress.
Wiener et. al. (2008) found that 77 percent of their sample met criteria for clinical
psychological distress, with 12 percent meeting criteria for Posttraumatic Stress
Disorder. In addition, researchers found that men experienced significantly higher
10


rates on the Global Severity Index (GSI) of the Brief Symptom Inventory (BSI)
compared to women. However, male and female participants both scored significantly
high scores on the GSI compared to the population norms. When investigators
analyzed participant scores by age group, no significant differences were found
between participants who were diagnosed in childhood versus adolescence (Wiener
et. al., 2008). Based upon this research one might ask that if mental health services
were provided at time of diagnosis and during treatment, that possibly adults
survivors of pediatric cancer might have experienced lower levels of psychological
distress. Therefore, this current studys intend to investigate whether a patients
family structure and cohesion may be associated to a patients psychosocial and
mental health supportive needs. By investigating the association between cohesion in
the family and psychosocial support interests we may be better able to eventually
intervene at a critical point for patients, so that they may not experience long-term
mental health problems.
Hoekstra-Weebers, Jaspers, Kamps & Klip (1998) examined martial
satisfaction of parents of pediatric cancer patients and its relationship to
psychological distress and coping style. Participants completed the Maudsley Marital
Questionnaire-Satisfaction (MMQ-S), Goldberg General Health Questionnaire, and
the Ultrecht Coping List (UCL). These questionnaires were completed at two weeks
post diagnosis, six months and at one year. Hoekstra-Weebers et. al. (1998) found a
significant increase in reported levels of martial dissatisfaction over time for both
11


parents of pediatric cancer patients. These scores were compared with volunteer
couples and couples that were referred for marital problems. When comparing the
scores of parents with pediatric cancer patients against couples with marital problems,
parents of pediatric cancer patients were found to have lower reported levels of
martial dissatisfaction (Hoekstra-Weebers et. al., 1998). Even though the parents with
pediatric cancer patients reported a decline in marital satisfaction from the time of
diagnosis to 12 months later, it was not significantly difference from the volunteer
participants. Researchers also found that both parents experienced a significant
decrease in psychological distress from the time their child was diagnosis to 12
months later (Hoekstra-Weebers et. al., 1998). Although, the parents of pediatric
cancer patients reported a decline in their psychological distress over time, their
distress was significantly greater then the volunteer group. This is important to note
because while parents were experiencing an improvement in their mental health since
the time of their childs diagnosis, but were expressing greater dissatisfaction in their
marriages.
From a family systems approach, a breakdown in the couple and parent
subsystem can potentially have ramifications on a childs environment as they receive
treatment for cancer (Nichols & Schwartz, 2006). The authors point out that the
higher level of distress was most likely a result of the stress caused by their child
being diagnosed with cancer (Hoekstra-Weebers et al., 1998). However, at the one
year follow-up the distress experienced by the parents could be more chronic and was
12


more negatively associated with their marital satisfaction. The investigators point out
that there was a large degree of unexplained variance. Consequently, there are many
other factors that should also be investigated, such as cohesion within the family and
the disruption of the familys life due to the cancer treatment (Hoekstra-Weebers et.
al., 1998). Therefore, by investigating how family structure and cohesion relate to the
supportive needs of pediatric cancer families, we can begin to learn more about the
types of early interventions that could prevent marital conflict and distress.
Previous research has examined the link between childrens adjustment to
physical illness. Specifically, studies have found that matemal/marital/family
adjustment and family cohesion were correlated with children adjusting better to
illness (Sawyer et. al, 1998). A study by Sawyer, Steiner, Antoniou, Toogood & Rice
(1998) investigated maternal adjustment following a childs cancer diagnosis, at two
years post diagnosis and its link with the childs psychological adjustment at two
years post diagnosis. Parents completed the Goldberg General Health Questionnaire
and the Child Behavior Checklist (CBCL), while families completed the General
Functioning Scale of the Family Assessment Device. As hypothesized, the
researchers found that higher maternal psychopathology following their childs
diagnosis and poor family adjustment was associated with high rates of mental health
problems in the pediatric cancer patients at the two year follow up (Sawyer et. al.,
1998). In particular maternal scores on the Goldberg General Health Questionnaire on
the Anxiety, Insomnia, Depression and Somatic Symptoms subscales had a
13


significant correlation with childs CBCL score. Sawyer et al. (1998) concluded that
maternal distress following a childs cancer diagnosis can have a significant impact
on the childs future mental health. However, they also concluded that overall family
and fraternal adjustment seemed to have only a limited impact on the pediatric cancer
patients later psychological adjustment. A clear limitation of the study is that all
measures were completed via maternal report. Consequently, the mothers
perceptions of their childs emotional problems may be biased.
Gender and mental health
Previous research has found that infertility can have negative effects on ones
psychological well-being ranging from depression, anxiety, anger and isolation
(Valentine, 1986, Dhillon et al. 2000, Epstein et al. 2002, as cited in Malik and
Coulson, 2008). Since, women tend to experience higher rates of depressive and
anxiety symptoms, they may be more likely to experience more negative effects on
their psychological well-being when faced with infertility. Therefore, by addressing
the issue of infertility, one must also address the possibility of gender differences in
the rate of utilization of mental health services. In particular, Leaf and Bruce (1987)
investigated gender differences in the use of mental health services. The intent of the
study was to investigate whether differences in gender were dependent on the
utilization of specific services. Data was collected via the Epidemiologic Catchment
Area (ECA) program, which was investigating the prevalence and frequency of
14


psychiatric disorders and the use of mental health services. The studys sample
consisted of the first two portions of data collected for the ECA program. The first
portion of data collected from the ECA was men and women 18 years of age or older,
while the second portion of data consisted of men and women 65 years of age or
older. Each participant was interviewed about their contacts about mental health with
either a mental health profession or a medical doctor. In addition, respondents were
interviewed about their attitudes towards the use of mental health services.
Participants were assessed by the Diagnostic Interview Schedule (DIS) which was
based on the Diagnostic Statistical Manual III.
Leaf and Bruce (1987) found that women reported having had contact about
their mental health twice as often as males. Particularly, women were more likely to
have contact with a medical doctor about their mental health than men. Leaf and
Bruce (1987) also found that the use of mental health services depended on the
treatment setting. When participants were separated into groups with either contact
with a mental health professional or a medical doctor, no gender differences existed
in occurrence of psychiatric disorders. Interestingly, males and females were just as
likely to express positive attitudes towards the use of mental health services.
However, women that did not meet criteria for a psychiatric disorder were more likely
to seek mental health services and had more positive attitudes towards using mental
health services. On the other hand, men that did meet criteria for a psychiatric
disorder, were considerably less receptive to using mental health services actually had
15


greater rates of utilization than women. Leaf and Bruce (1987) conclude that in order
to understand whether gender differences exists one must look at the rates by what
section of care the individual comes in contact with ie. medical or mental health.
In Chandra and Minkovitz (2006) they investigated the gender differences and
stigma of mental health services in 8th graders. Investigators created a questionnaire
assessing beliefs in regards to social support, barriers to mental health services,
stigma towards seeking mental health services, mental health knowledge and personal
experience with mental health issues. Overall, girls reported higher rates of social
support and emotional support than boys. Particularly, girls expressed more
willingness to speak with a friend or family member (non-parent). Chandra and
Minkovitz (2006) found that boys were significantly more likely than girls to not
have someone to turn to for emotional support. In addition, boys reported
significantly greater stigma with seeking mental health services than girls. Girls were
found to have great knowledge about mental health and were significantly more
willing to seek services. This can have clear implications on the population this study
is investigating.
Deflorio and Massie (1995) investigated gender differences by conducting a
review study of patients with cancer and depression (as cited in Massie, 2004). Of the
49 studies they review, 30 had results in regards to gender. Out of the 30 studies, 23
found no significant difference of depression by gender. Out of the remaining studies,
16


10 found some gender differences by patient type, anxiety and denial. However, they
were mostly trends and not statistically significant results.
Clearly, there are a number of things that this study should consider when
evaluating level of distress and mental health support needs by gender. First of all,
Major Depressive Disorder and Generalized Anxiety Disorder, according to the
DSM-IV-TR are diagnosed more often in adolescent and adult females than males.
However, the population that this study is investigating will likely not meet criteria
for a disorder. According to Chandra and Minkovitz (2006) they found that girls were
significantly more open to sharing their emotional concerns with friends and non-
parents. Therefore, female patients may be more open to sharing their mental health
concerns. Therefore, it is predicted that female patients will report greater distress on
the DASS compared to males. The same study also found that girls expressed less
stigma beliefs towards mental health services than boys (Chandra and Minkovitz,
2006). In Leaf and Bruce (1987) when women received contact about their mental
health in a medical setting, they were more receptive and had positive attitudes
towards seeking mental health, even when they when they did not meet criteria for a
psychiatric disorder. As a result, it is predicted that females will report a higher score
on the needs assessment than males.
17


The Current Study
The objectives of this study were to investigate how family structure and
cohesion within the family may have implications on the support needs of adolescents
with cancer and their family members. By assessing various relationship factors such
as the structure of a family, cohesion and flexibility, how that may relate to mental
health/supportive needs of pediatric cancer patients, mental health professionals
maybe better able to tailor their services to this unique population. Clearly no two
people or families are alike. Consequently, the mental health needs of the family
should also be assessed in conjunction with the patient with cancer.
It was hypothesized that parents and children from non-nuclear families (as
defined as any family structure group other than nuclear family ie. child being raised
by biological parents in the same household) would report less cohesion in their
families than parents and children from nuclear families. Due to lower cohesion in the
family, it is also hypothesized that non-nuclear families would desire greater support
as measured by the FFP Needs Assessment Survey. Therefore, parents will want more
support, as well as patients. Researchers anticipated that differences would exist by
gender, as evidenced by participants scores on the DASS and the FFP Needs
Assessment Survey. Specifically, it is anticipated that female patients will report
greater distress and will desire more support.
18


CHAPTER 2
METHOD
Participants
Of the patients that were approached for the study, 23 patients completed all
materials, with 13 patients not completing all measures or not returning the materials.
Patients with completed measures consisted of 13 females (56.5%) and 10 males
(43.5%). The patients ages ranged from 13 to 21 years, with a mean age of 16.32
(SD = 4.4). A total of 16 patients were from a nuclear family (69.6%), 4 lived with
their stepfamily (17.4%) and 3 were from single-parent households (13%). Twenty
(87%) of the patients were Caucasian and three (13%) were Hispanic. Twenty-three
parents completed materials, 18 (78.3%) were mothers, 5 (21.7%) were fathers.
Demographic data for patients and parents of nuclear and non-nuclear families are
presented is table 2.1. Fifteen out of the 38 patients (39%) were approached for the
study and either declined to participate or did not fully complete the materials.
Participants with incomplete materials and those that declined to participate had a
mean age of 18.15, and were found to be significantly different compared to
participates that completed the materials (p=.02). In addition, participants with
19


incomplete materials or declined the study also were different by race and length
since diagnosis.
Table 2.1 Demographic Data for patients
Nuclear Family Non-Nuclear Family
N 16 7
Gender
Female 7 (43.7%) 6 (85.7%)
Male 9 (56.3%) 1 (14.3%)
Patient age 16.7(3.9) 15.4(4.2)
Ethnicity
Caucasian 14 (87.5%) 6 (85.7%)
Hispanic 2 (12.5%) 1 (14.3%)
Parental makeup for FACES-IV
Mother 13(81.3%) 5(71.4%)
Father 3 (18.7%) 2 (28.6%)
Parentheses indicate standard deviations, unless otherwise noted.
Measures
To investigate how the relationship between factors in the family such as,
family structure, enmeshment, and cohesion may relate to the family and child with
20


cancer, multiple measures were used. The study used the Family Adaptability and
Cohesion Evaluation Scales, Depression Anxiety and Stress Scales, a demographic
questionnaire and a supportive needs survey. The demographic questionnaire
collected information such as, gender, date of birth, age, guardian title and race.
FACES-IV
The Family Adaptability and Cohesion Evaluation Scales (FACES-IV) (Olson
et. al., 2007) is a 42 item self-report questionnaire that measures family functioning
by assessing cohesion and flexibility. Cohesion is the degree to which members of
family are connected or disengaged from one another. Flexibility is measured by how
adaptive family members are in their leadership roles, relationships and rules. This
scale can be completed by one or multiple members of the family, ranging from 12
years of age to adult. Each question is answered on five point Likert scale. The
FACES-IV has demonstrated good reliability, ranging on the six subscales from .77
to .89 for internal consistency. The measure assesses two dimensions, cohesion and
flexibility, within each dimension there are three subscales (Olson et al., 2006). In the
cohesion dimension the subscales are disengaged, balanced cohesion, and enmeshed,
while in the flexibility dimension the subscales are rigid, balanced flexibility, and
chaotic. The cohesion ratio is calculated by dividing the total cohesion score by the
sum of the participants disengaged and enmeshed score. The flexibility ratio is found
by dividing the flexibility score by the sum of the respondents rigid and chaotic
21


score. Depending on the combination that a family member scores on the two
dimensions, their family will be identified as one of six family types, ranging from a
healthy family relationship to a problematic family dynamic. The six family types
are: Balanced, Rigidly Balanced, Midrange, Flexibly Unbalanced, Chaotically
Disengaged, and Unbalanced (Olson et. al., 2006). Based on Olson et. al. (2007) the
FACES-IV was also found to have strong validity in multiple studies comparing other
similar self-report measures such as, the Family Environment Scale, the Family
Assessment Device, the Family Systems Test.
DASS-21
The Depression Anxiety Stress Scale (DASS-21) is a 21 item self-report
questionnaire that measures depression, anxiety and stress. The measure has good
reliability, according to Crawford & Henry (2003), in which reported internal
consistencies ranging from almost .90 to .966 depending on the subscale. The DASS-
21 consists of three subscales: Depression, Anxiety and Stress (Antony et. al., 1998).
In addition, the various subscales of the DASS-21 were found to have strong
convergent validity with the Beck Depression Inventory (BDI), Beck Anxiety
Inventory (BAI) and the State-Trait Anxiety Inventory (STAI-T). Respondents can be
from 12 years of age through adults (Crawford et. al., 2003).
22


FFP Needs Assessment Survey
The FFP Needs Assessment Survey assesses three areas: whether the
participants is satisfied with the information they have received from their doctors
and nurse, whether they still have questions and if they would be interested in various
support options ranging from infertility treatment to individual therapy. On the first
two parts of the survey participants may respond with either a yes, no or dont know
and on the last part respond with either a definitely interested, might be interested or
not interested at all. For the purpose of this study, one the third part of the FFP Needs
Assessment Survey will be used.
Procedure
Males and females with a cancer diagnosis and between the ages of 12 to 22
years of age who are patients of The Childrens Hospital Hematology/Oncology clinic
and their families were approached as possible participants for this study. Contact was
be made by the FFP nurse or research assistants to inform patients and their families
about the study and of the requirements. During the clinical visit for the FFP, the health
care provider provided the patients and their parents with the consent form explaining
about their rights to confidentiality. Upon receiving consent from the parents, the
investigator obtained the patients assent if under the age of 18. After signing the
consent form, participants were provided with a copy. Questionnaires were provided to
23


patients and their families. After completion of the questionnaires, participants received
a debriefing form and referral information to mental health services in their area.
Data Analysis
Based upon past research, this study predicted that parents and children from
non-nuclear families (as defined as any family structure group other than nuclear
family; ie. child being raised by biological parents in the same household) would have
less cohesion than parents and children from nuclear families. Due to the studys
small sample size, all non-nuclear family types were collapsed into a single category
as non-nuclear family ie. single-parent households and stepfamilies. T-tests were run
to compare levels of cohesion in nuclear and non-nuclear families by both parents and
patients.
Due to lower cohesion in the family, it was also hypothesized that parents and
patients from non-nuclear families would desire greater support by the FFP Needs
Assessment Survey. Chi-square tests were conducted to examine if there were any
associations between nuclear family type and participants interest in additional
support options. Chi-squares were run by item to examine specific support needs that
patients and parents of non-nuclear and nuclear families were interested in. As a
result of the studys small sample size, some of the cells in the chi-squares had cell
sizes less than five. Consequently, Fishers Exact Test was used because it allows for
cells that have counts that are less than five. Participants responded with either
24


definitely interested, might be interested, or not interested at all. Responses that
consisted of very interested or might be interested were collapsed into a single
category. Items consisted of talking with a member of their care team about
reproductive health issues, fertility preservation and treatment options, monitoring by
my care team to see if patient will be able to have children when they are ready to
have a family, infertility treatments, and individual/group/family meetings with a
therapist to talk about concerns with reproductive health/fertility.
25


CHAPTER 3
RESULTS
Family Structure and Cohesion
Parents of non-nuclear families (n-1) had slightly higher scores on the
FACES-IV dimension of cohesion than parents of nuclear families (n=16), but this
difference was not statistically significant (t(21)= 1.871,/?=. 186). A slightly greater
cohesion ratio was found for parents of nuclear families compared to parents of non-
nuclear families, however no statistically significant differences were found
(t(21)=.305, p=.587). Parents of nuclear and non-nuclear families scores are
displayed in Table 3.1.
It was hypothesized that patients from non-nuclear families would report
significantly lower cohesion in their families then patients from nuclear families. A
significant difference was found with the cohesion dimension score (t(21)=783,
p=.0l3), in that patients from non-nuclear families reported lower levels of cohesion
then patients from nuclear families. In addition, patients from nuclear families were
found to have a higher cohesion ratio than the patients from non-nuclear families, this
26


difference was found to be statistically significant (r(21)=1.73,/>=. 05).
Table 3.1
Mean scores and standard deviations on the cohesion dimension of the FACES-IV of
parents and patients of both nuclear and non-nuclear families
Participant Nuclear Non-Nuclear
Parents
Cohesion Dimension Score 75.9(24.3) 81.8(11.1)
Cohesion Ratio 2.7(.78) 2.45(.73)
Patients
Cohesion Dimension Score 77.3(20.1)* 50.1(26.3)
Cohesion Ratio 2.5(.81)* 1.8(.46)
*p < .05
27


Family Structure and Support Needs
No significant differences were found between patients of non-nuclear
families and nuclear families as measured by the FFP Needs Assessment on items
measuring interest for additional support and information about talking with their care
team about reproductive health issues/fertility preservation (p=1.000, Fishers Exact
Test), monitoring by care team to see if he or she would be able to have children
(p=1.000, Fishers Exact Test), infertility treatment (/>=1.000, Fishers Exact Test)
individual meetings with a therapist (p=.326, Fishers Exact Test) and family
meetings with a therapist (p=1.000, Fishers Exact Test). However, a significant
difference was found (p=.049, Fishers Exact Test), with patients of non-nuclear
families being more interested in group meetings with a therapist than nuclear
families.
Although significant results were not found between patients of non-nuclear
families and nuclear families, on five out of the 6 items on the FFP Need Assessments
measuring desire for additional support, some interesting results were found. In
particular, nearly 90% of the patients responded that they would be interested in
talking with their care team about reproductive health issues/fertility preservation and
treatment options. Approximately 83% of patients were interested in their care team
monitoring them to assess if they would be able to have children when they were
ready. In addition, approximately 65% of the patients surveyed reported interest in
infertility treatments. However, patients were less interested in receiving additional
28


psychosocial support. Overall, 28% of patients reported interest in receiving
individual meetings with a therapist. In addition, 22% of responded that they would
be interested in having family meetings with a therapist. Lastly, 40% of patients
reported interest in having group meetings with a therapist. Level of patient interest in
support options reported in percentages is displayed in Table 3.2 and Figure 3.1.
Table 3.2
Percentages of nuclear and non-nuclear patients interest on the support options
Section of the FFP Needs Assessment Survey
Patients Nuclear Non-Nuclear
Support Options
Talking with Care Team 90.9% 85.7%
Monitoring by care team 81.8% 85.7%
Infertility Treatments/ Fertility Preservation 60.0% 71.4%
Individual Meetings With a therapist 18.2% 42.9%
Group Meetings With a therapist 18.2% 71.4%*
Family meetings With a therapist 18.2% 28.6%
p < .05 *
29


Patient* Interest In Support Options
f
I
100.00%
90.00%
80.00%
70.00%
60.00%
50.00%
40.00%
30.00%
20.00%
10.00%
0.00%
Talking wrfth care Monitoring by care Infertility Individual Meetings Family Meetings with Group Meetings with
team team Treatments/Fertility with a Therapist a Therapist a Therapist
Preservation
Support Options
Figure 3.1 Total percentages of patients interest in support options combined across
family types.
No significant differences were found between parents of non-nuclear families
and nuclear families as measured by the FFP Needs Assessment on items measuring
interest for additional support and information about infertility treatment (p-1.000,
Fishers Exact Test), talking with their childs care team about reproductive health
issues/fertility preservation (p=.318, Fishers Exact Test), individual meetings with a
therapist (p=l .000, Fishers Exact Test), group meetings with a therapist (p=.346,
Fishers Exact Test) and family meetings with a therapist (p=1.000, Fishers Exact
30


Test). However, parents of nuclear families were slightly more likely to be interested
in monitoring by their childs care team to see if their child someday will be able to
have children when they were ready (p=.100, Fishers Exact Test).
Despite not finding any statistically significant differences between parents of
non-nuclear and nuclear families on interest expressed on the FFP Needs Assessment
Survey, other interesting results were found. Importantly, parents reported high
interest in medically-related support for their children and showed some interest in
receiving psychosocial support. Percentages of nuclear and non-nuclear parents
interest in support options are displayed in Table 3.3 and Figure 3.2. Approximately
96% of parents expressed interest in talking with their childs care team about
reproductive health issues/fertility preservation and treatment options. Furthermore,
90% of parents reported interest in having there child monitored to see if they would
be able to have children when they were ready. Lastly, almost 91% of parents
reported that they would be interested in information and support about infertility
treatment for their child. Interestingly, parents expressed greater interest in
information and supportive care for mental health then patients. Approximately 71%
of parents reported being interested in individual meetings with a therapist to discuss
their son or daughters reproductive health. Nearly 55% of parents in the sample
voiced interest in attending family meetings with a therapist and discussing their
childs reproductive health. Lastly, 38% of parents reported interest in attending
group therapy to discuss their son or daughters reproductive health with other
31


parents. Overall, it appeared that both patients and parents appeared interested in
medically-related support options. However, compared to 90% of parents and 64% of
patients, it appears that parents may be more interested in fertility
preservation/infertility treatment. Percentages of both patients and parents interest in
support options are displayed in Table 3.4.
Table 3.3
Percentages of nuclear and non-nuclear parents interest on the support options
Section of the FFP Needs Assessment Survey
Parents Nuclear Non-Nuclear
Support Options
Talking with Care Team 100% 85.7%
Monitoring by care team 100% 71.4%
Infertility Treatments/ Fertility Preservation 93.3% 85.7%
Individual Therapy 71.4% 71.4%
Group Therapy 28.6% 57.1%
Family Therapy 53.3% 57.1%
32


Ptrcmttgi of Intomst
Parents Intaraat In Support Options
100.00%
90.00%
80.00%
70.00%
60.00%
50.00%
40.00%
30.00%
20.00%
10.00%
0.00%
Talking with care Monitoring by care Infertility Individual Meetings Family Meetings with Group Meetings with
teem team Treatments/Fertllity with a Therapist a Therapist a Therapist
Preservation
Support Options
Figure 3.2 Total percentages of parents interest in support options combined across
family types.


Table 3.4
Percentages ofparents and patients interest on the support options section of the
FFP Needs Assessment Survey
Participants Parents Patients
Support Options
Talking with Care Team 95.5% 88.9%
Monitoring by care team 90.5% 83.3%
Infertility Treatments/
Fertility Preservation 90.9% 64.7%
Individual Meetings 71.4% 27.8%
With a therapist
Group Meetings 38.1% 38.9%
With a therapist
Family Meetings 54.5% 22.2%
With a therapist
Gender, Distress, and Support Needs
It was predicted that female patients would report greater distress, according
to the DASS then male patients. Raw scores of male and female patients are
displayed in Table 3.5. Overall, female patients reporter slightly greater
symptomatology (M=3.94, SD=3.39) for anxiety than males (M=2.50,5D=3.177),
34


however the difference was not found to be significant (/(26)=.990, p=265). Males
also reported lower depressive symptoms (M=2.75, SD=5.44) than female patients
(M=3.71, SD=4.39), although this was not found to be statistically significant
(F(27)=.018,/>=.606). Lastly, female patients reported mildly greater stress (M= 5.76,
SD=4.22), than male patients (M=4.75,5D=5.101), but not statistically significantly
different (r(27)=l .826, p=.563). Normative means and significant raw scores for
distress on the DASS-21 are displayed in Table 3.6.
It was anticipated that female patients would report great interest in support
options than male patients. Male patients responded with almost equal interest
(85.7%) as female patients (88.2%) towards receiving monitoring from their care
team when they were ready to have children, consequently no significant difference
was found (p=1.000, Fishers Exact Test). In addition, male (85.7%) and female
(88.2%) patients had similar interest in talking with their care team about
reproductive health and preservation, though it was not statistically significant
(p=1.000). Male patients reported slightly higher interest in infertility treatment
(83.3%) than female patients (73.3%), although it was not found to be statistically
significant (p=1.000, Fishers Exact Test). Although female patients were slightly
more interested (47.1%) in receiving individual meetings with a therapist than male
patients, the difference was not found to be statistically significant (p=1.000, Fishers
Exact Test), (28.6%). Male patients (42.9%) were somewhat more interested in
family meetings with a therapist than female patients (35.3%), but no statistically
35


significant difference was found (p=1.000, Fishers Exact Test). Although female
patients (52.9%) responded with greater interest in group therapy than male patients
(42.9%), it was not statistically significant (/?=1.000, Fishers Exact Test).
Table 3.5
Mean scores of male and female patients on the DASS-21.
Patients Males Females
Mean raw score On DASS-21 10.0(12.9) 12.9(10.4)
Depression Subscale 2.8(5.4) 3.7(4.4)
Anxiety Subscale 2.5(3.2) 3.9(3.4)
Stress Subscale 4.8(5.1) 5.8(4.2)
36


Table 3.6
Normative means and raw scores for significant level of distress on DASS-21.
Norm Scores for DASS-21 Population Mean Score Raw Score for Significant Level of Distress
Total raw score 9.43(9.66) 28*
Depression Subscale 2.83(3.87) 11*
Anxiety Subscale 1.88(2.95) 8*
Stress Subscale 4.73(4.20) 13*
p< .05*
37


CHAPTER 4
DISCUSSION
The purpose of this study was to investigate how family structure and
cohesion within the family may have implications on the support needs of adolescents
with cancer and their family members. The present study assessed the factors of
family structure and cohesion using the FACES-TV, distress experienced by pediatric
cancer patients was measured via the D ASS-21 and the support needs of pediatric
cancer patients and their families through the use of the FFP Needs Assessment
Survey. It was hypothesized that parents and children from non-nuclear households
would report less cohesion in their families than parents and children from nuclear
families. Due to lower cohesion in the family, it was also hypothesized that members
from non-nuclear families would report greater interest in support as measured by the
FFP Needs Assessment Survey. Due to higher rates of internalizing symptomatology,
such as depressive and anxiety symptoms in females, it was predicted that gender
differences would exist on level of distress. In addition to higher rates of internalizing
symptoms in women, previous research has shown that women tend to experience
less stigma towards mental health than males (Chandra and Minkovitz, 2006).
38


Therefore, it was hypothesized that females may express greater interest in support
options.
As predicted, the study found a significant difference between patients of
nuclear families and non-nuclear families on level of cohesion. In particular, patients
of nuclear households reported on the FACES-IV having higher levels of cohesion in
their families than patients of non-nuclear families. There are a number of things this
could be due to, for instance parents of non-nuclear families may receive additional
support from their spouse, which may lead them to perceive their family as more
cohesive. Logically, patients from non-nuclear families, may not be as close to their
step-parent or may not be in contact or receiving support from their non-resident
parent. Consequently, the patient of a non-nuclear family may view their family as
less cohesive, because they might not be receiving as much support from their
parents spouse as compared to their biological parent. Therefore, a possible future
direction would be looking at the congruence between parent/child dyads in nuclear
families versus parent/dyads in non-nuclear families and why that may exist. One
might expect to find stronger inter-rater reliability between parents and children of
nuclear families compared to non-nuclear families.
As predicted, a significant difference was found between patients of non-
nuclear families and patients of nuclear families on their interest in support options.
In particular, patients from non-nuclear families expressed greater interest in group
therapy than patients from nuclear families. However, no significant difference was
39


found between patients of non-nuclear families and patients of nuclear families on the
other support options such as, talking with a member of their care team, monitoring
by their care team to see if they would be able to have children, individual therapy
and family therapy. One should note that, overall, all patients appeared to be
interested in the medical related support options. Therefore, it is possible that with a
larger sample size, future studies maybe able to find a significant difference on other
support interests by family structure type.
Although no statistically significant differences were found with parents, that
is not to say that the results were not clinically important. For instance, a large
majority of nuclear and non-nuclear parents reported interest the medically related
support options, and as reported interest in the psychosocial or mental health related
support options. Therefore, regards of no finding a significant difference between the
groups, all parents, non-nuclear and nuclear were interested in additional help and
support. Interestingly, one trend was found with parents of nuclear families being
more interested in monitoring to see if their child would be able to have children
someday compared to parents of non-nuclear families. Parents of nuclear families
showed slightly greater interest in monitoring by their childs care team to see if their
child someday would be able to have children when they were ready. One thing that
was not considered was whether or not the non-nuclear parent was the biological
parent of the child or their step parent. This difference might be explained if some of
the non-nuclear parents in the sample were step-parents of the patients. In this case, if
40


they were step-parents, one might postulate that they might be less concerned in their
spouses child receiving monitoring from their care team to see if they would be able
to have children someday.
Noteworthy are the lack of gender difference found by scores on the DASS-21
and the FFP Needs Assessment Survey. Prior research had found that females tend to
be more open to seeking mental health than males (Chandra and Minkovitz, 2006). In
addition, women tend to experience higher rates of internalizing symptoms compared
to men. However, the study found no significant difference by gender on level of
distress. More importantly, the sample of patients reported relatively low rates of
distress, compared to the norms of the DASS-21 (Henry & Crawford, 2005). In
particular, one must receive a score of 11 in the depression subscale to be considered
to be experiencing a significant level of depressive symptoms based upon the
normative data. Although females did experience slightly greater scores of distress on
the DASS-21 than the normative mean scores, they were not significantly distressed.
Due to this being a pilot study, many of the patients surveyed were in different points
of treatment. Therefore, future studies should examine the patients level of distress at
diagnosis and at the end of treatment, and if it relates to their interest in support
options.
41


Additional Future Directions
A limitation of not looking at age across patients and its association with
perceived cohesion is that due to the transition from childhood into adolescence and
eventually adulthood, family conflict and cohesion within the family can ebb and
flow (Baer, 1999). Consequently, it is possible that children may perceive their
families as more cohesive depending on their stage in development. For instance,
typically an increase in conflict between parent and child is experienced during
adolescence (Baer, 1999). This increase in conflict could potentially effect ones
perception of family cohesiveness. Baer (2002) surveyed students from 6th grade
through 10th. Each participant completed the FACES HI and was followed over
several years to test if their perceived level of family cohesion changed with age.
Based on the results of Baer (2002) analyses, it was found that there were significant
decreases in perceived cohesion in the family over time. Consequently, age may play
a factor over time in how one perceives cohesion to exist in their family. One might
postulate that through a normal development trajectory of a child entering
adolescence and becoming more autonomous, that they may perceive their family as
less cohesive, even when there maybe no change in cohesion within the family. Due
to the small sample size of this study, we were unable to investigate this possibly.
Therefore, as a future direction studies should investigate whether age plays a factor
in how ones perceives cohesion and its association to patients interest in support
options.
42


In past research, a study found that as the number of transitions a child
experienced in their family increased was associated with higher rates of
externalizing behaviors (Fomby & Cherlin, 2007). Therefore, future studies should
examine if pediatric cancer patients with multiple family transitions experienced any
difference in level of distress during and following treatment, as well as any
difference in interest in support options. Another possible direction would be compare
patients and parents perceptions of cohesion and possible reasons why their
perceptions differ. This study only had one parent complete each of the measures and
did not examine if there was a difference between moms and dads on perceived
cohesion in the family. Lastly, another future direction may be to investigate if
patients that did not complete the measures were different in anyway, such as
demographically or if they had other medical complications.
Limitations
A problem that may be possible with recruiting from this population is that
there tends to be higher rates of cancer in males than females from the ages of 0 to 19.
According to the SEER report, the incidence of pediatric cancer in males from the
ages of 0-14 is approximately 20% higher than females. However, with age the
difference in incidence decreases. Since the sample population for this study ranged
from the ages of 13 to 21 years of age, it is believed that the sample would have been
more evenly distributed. Another problem that occurred was with working with a
43


population being treated for cancer it was more likely that not all participants were
healthy enough to complete all measures. For those patients with incomplete
materials they had a significantly greater time between their initial diagnoses to the
point when they were approached for the study. However, there was a large range in
time from initial diagnosis to when they were approached. Therefore, for some of
those patients they might have not been well enough to complete the measures and
might have responded differently. For instance, a patient that was ill might have
reporter greater distress on the DASS than a patient that was healthy enough to
complete the surveys. Another possibility is if some of the patients had a large span of
time since their initial diagnosis the idea of completing a study about cancer might
not have been salient to them. A possible threat to external validity is due to the
groups in the study not being randomized. The groups could not be randomized
because the study was looking at whether patients and parents of non-nuclear families
differed from nuclear families. Another limitation to this study is its small sample size
and uneven groups. A small sample size makes it more difficult to find significant
differences between groups. In addition, the studys sample had nearly twice as many
participants from nuclear families as non-nuclear families. As a result, this could have
made it more difficult to find hypothesized differences. Additionally, the studys
small sample size impacted power. It is also possible that by collapsing all non-
nuclear family structures in a single group, it might have increased the variability in
the sample making it more difficult to detect hypothesized relationships.
44


This study hoped that by assessing the relationship between factors in the
family and mental health needs after being diagnosed with cancer, mental health
professionals could provide more specialized treatment and support for those at risk
for losing their fertility. Clearly for many individuals and couples, finding out that
they might be infertile could cause a multitude of mental health problems. This can be
further complicated by the fact that both mental health and infertility treatment can be
incredibly expensive. Consequently, by having certain populations, such as those
diagnosed with cancer be assessed at the earliest point in treatment and then provided
with the necessary support at an early age, the costs both mentally and economically
will not be so high.
45


APPENDIX A.
DASS21
Please read each statement and circle a number 0, 1, 2 or 3 that indicates how much the statement
applied to you over the past week. There are no right or wrong answers. Do not spend too much time
on any statement.
The rating scale is as follows:
0 Did not apply to me at all
1 Applied to me to some degree, or some of the time
2 Applied to me to a considerable degree, or a good part of time
3 Applied to me very much, or most of the time
1 1 found it hard to wind down 0 1 2 3
2 1 was aware of dryness of my mouth 0 1 2 3
3 1 couldn't seem to experience any positive feeling at all 0 1 2 3
4 1 experienced breathing difficulty (eg, excessively rapid breathing, breathlessness in the absence of physical exertion) 0 1 2 3
5 1 found it difficult to work up the initiative to do things 0 1 2 3
6 1 tended to over-react to situations 0 1 2 3
7 1 experienced trembling (eg, in the hands) 0 1 2 3
8 1 felt that 1 was using a lot of nervous energy 0 1 2 3
9 1 was worried about situations in which 1 might panic and make a fool of myself 0 1 2 3
10 1 felt that 1 had nothing to look forward to 0 1 2 3
11 1 found myself getting agitated 0 1 2 3
12 1 found it difficult to relax 0 1 2 3
13 1 felt down-hearted and blue 0 1 2 3
14 1 was intolerant of anything that kept me from getting on with what 1 was 0 1 2 3
doing
46


15 I felt I was close to panic 0 1 2 3
16 I was unable to become enthusiastic about anything 0 1 2 3
17 I felt I wasn't worth much as a person 0 1 2 3
18 I felt that I was rather touchy 0 1 2 3
19 I was aware of the action of my heart in the absence of physical exertion (eg, sense of heart rate increase, heart missing a beat) 0 1 2 3
20 I felt scared without any good reason 0 1 2 3
21 I felt that life was meaningless 0 1 2 3
47


APPENDIX B.
FACES-IV Questionnaire
Background Information
Current relationship status:
(a) _Single, never married
(b) _Single, divorced
(c) _Single, widowed
(d) _Married, first marriage
______Not applicable (CHILD)
Current living arrangement:
(a) __Alone
(b) __With Parents
(c) __With Partner
______Other, please describe: _
(e) __Married, not first marriage
(f) __Life-partnership
(g) __Living together
(h) __Separated
(d) __With Others
(e) __With Children
(f) _With Partner and Children
Current Family Structure:
K-------Iwo Parents (biological) (d)_____Two Parent (same sex)
(b) ----Two parents (step family) (e)_____one Parent
(c) ___Two parents (adoptive)
________Other, please describe: _______________________
Family Member (ie, who are you in your family):
(b)----Mo'lhX (d)____Second Child
£ S" ()_ Third Child
(0____Fourth or Younger Child
Other, please describe:
48


Number of Children in Family
(a) __None (e)______Four
(b) ___One (f)_____Five
(c) __Two (g)_____Six or more
(d) ___Three
Directions to Family Members:
1. All family members over the age 12 can complete FACES IV.
2. Family members should complete the instrument independently, not consulting or
discussing their responses until they have been completed.
3. Please circle the number that best corresponds to your level of agreement with each statement, using
the scale below:
Strongly Generally Undecided Generally Strongly
Disagree Disagree Agree Agree
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1. Family members are involved in each others lives.
2. Our family tries new ways of dealing with problems.
3. We get along better with people outside our family than inside.
4. We spend too much time together.
5. There are strict consequences for breaking the rules in our family.
6. We never seem to get organized in our family.
7. Family members feel very close to each other.
8. Parents equally share leadership in our family.
9. Family members seem to avoid contact with each other when at home.
10. Family members feel pressured to spend most free time together.
11. There are clear consequences when a family member does something wrong.
12. It is hard to know who the leader is in our family.
13. Family members are supportive of each other during difficult times.
14. Discipline is fair in our family.
15. Family members know very little about the friends of other family members.
16. Family members are too dependent on each other.
17. Our family has a rule for almost every possible situation.
18. Things do not get done in our family.
19. Family members consult other family members on important decisions.
20. My family is able to adjust to change when necessary.
49


1 2 3 4 5
Strongly
Disagree
1
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
21. Family members are on their own when there is a problem to be solved.
Generally Undecided Generally Strongly
Disagree Agree Agree
2 3 4 5
22. Family members have little need for friends outside the family.
23. Our family is highly organized.
24. It is unclear who is responsible for things (chores, activities) in our family.
25. Family members like to spend some of their free time with each other.
26. We shift household responsibilities from person to person.
27. Our family seldom does things together.
28. We feel too connected to each other.
29. Our family becomes frustrated when there is a change in our plans or routines.
30. There is no leadership in our family.
31. Although family members have individual interests, they still participant in family
activities.
32. We have clear rules and roles in our family.
33. Family members seldom depend on each other.
34. We resent family members doing things outside the family.
35. It is important to follow the rules in our family.
36. Our family has a hard time keeping track of who does various household tasks.
37. Our family has a good balance of separateness and closeness.
38. When problems arise, we compromise.
39. Family members mainly operate independently.
40. Family members feel guilty if they want to spend time away from the family.
41. Once a decision is made, it is very difficult to modify that decision.
42. Our family feels hectic and disorganized._________________________________
43. Family members are satisfied with how they communicate with each other.
44. Family members are very good listeners.
45. Family members express affection to each other.
50


Strongly Generally Undecided Generally Agree Strongly Agree
Disagree Disagree
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
46. Family members are able to ask each other for what they want.
47. Family members can calmly discuss problems with each other.
48. Family members discuss their ideas and beliefs with each other.
49. When family members ask questions of each other, they get honest answers.
50. Family members try to understand each others feelings
51. When angry, family members seldom say negative things about each other.
52. Family members express their true feelings to each other.
For questions 53-62, please refer to the following scale when answering:
Very Somewhat Generally Very Extremely
Dissatisfied Dissatisfied Satisfied Satisfied Satisfied
12 3 4
Please circle the number that best matches your satisfaction level.
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
How satisfied are vou with:
53. The degree of closeness between family members.
54. Your familys ability to cope with stress.
55. Your family's ability to be flexible.
56. Your familys ability to share positive experiences.
57. The quality of communication between family members.
58. Your family's ability to resolve conflicts.
59. The amount of time you spend together as a family.
60. The way problems are discussed.
61. The fairness of criticism in your family.
62. Family members concern for each other.
5
51


APPENDIX C.
Needs Assessment (female patients)
1. Prior to your cancer diagnosis, were you interested in having a child someday?
no
yes
dont know
2. Are you interested in having a child someday?
no
yes
dont know
Yes No Dont know
Yes No Dont know
Yes No Dont know
Yes No Dont know
Yes No Dont know
Yes No Dont know
I am satisfied with the information I received from my doctors and nurses on the
following topics (circle one response for each):
Whether cancer treatment will impact my ability to have children
Whether I will still have a period (or get my period)
If a future pregnancy will increase my risk of my cancer returning
If cancer will cause me to have complications during a future pregnancy
lifetimes
I still have questions that I would like answered (circle one response for each):
Will cancer treatment impact my ability to have children?
Will I still have a period (or get my period)?
If I get pregnant in the future, will a future pregnancy increase my risk of my Yes No Dont
cancer returning?
If I become pregnant in the future, will I have an increased risk of
complications?
Will my future children at higher risk of birth defects because I have been
treated for cancer?
Will my future children have a higher than usual risk of cancer in their own Yes No Dont
lifetimes?
Other questions you would like answered related to reproductive health and Yes No Dont
fertility:
Yes No Dont know
Yes No Dont know
Yes No Dont know
Yes No Dont know
Yes No Dont know
Yes No Dont know
Yes No Dont know
52


If the Childrens Hospital of Denver had a special clinic for adolescent cancer patients
to help with concerns related to fertility and reproductive health, how interested would
you be in this service (please check level of interest for each type of service)?:
Not at all Might be
interested interested
Talking with a member of my care team about
reproductive health issues and fertility
preservation and treatment options
Monitoring by my care team to see if I will be
able to have children when I am ready
Infertility treatments or treatments to help me
preserve my fertility
Individual meetings with a therapist to talk with
my concerns about reproductive health and
fertility
Family meetings with a therapist to talk about
my concerns about reproductive health and
fertility
Group meetings with a therapist and other
kids like me to talk about concerns related to
reproductive health and fertility
Other (write your suggestions here)
Definitely
interested
53


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