James Madison University
JMU Scholarly Commons
/.$*)'+ $'$-. 3 ,/. #**'
+,$)"
Psychosocial needs of children coping with parental
terminal cancer in a hospital seing
Meredith Reed
James Madison University
*''*0.#$-)$.$*)'0*,&-. #4+-*((*)-'$%(/ / -+
,.*!.# -1#*'*"1*((*)-
3$-3 -$-$-,*/"#..*1*/!*,!, )*+ ) --1.# 3 ,/. #**'.#*','1*((*)-.#- ) +. !*,$)'/-$*)$)
/.$*)'+ $'$-.1)/.#*,$2 ($)$-.,.*,*!#*','1*((*)-*,(*, $)!*,(.$*)+' - *).. ($)%(/ /
*(( ) $..$*)
, $.#-1#*-*$') -*!#$', )*+$)"0$.#+, ).'. ,($)') ,$)#*-+$.'- 4$)" Educational
Specialist
#4+-*((*)-'$%(/ / -+
Psychosocial Needs of Children Coping with Parental Terminal Cancer in a Hospital
Setting
Meredith Reed
A research project submitted to the Graduate Faculty of
JAMES MADISON UNIVERSITY
In
Partial Fulfillment of the Requirements
For the degree of
Educational Specialist
Graduate Psychology
May 2014
ii
Dedication
This paper is dedicated to my beloved late parents, William P. Reed and Carol M.
Reed, and seven siblings, Kristin, Amanda, Lauren, Jessica, Lindsay, Devon, and
William (Scott) for inspiring me to research this topic.
iii
Table of Contents
Dedication………………………………………………………………...……….ii
Abstract…………………………………………………………..……………….iv
I. Introduction…………………………………………………………….………….1
II. Literature Review………………………………………………………………….2
Prevalence of Cancer………………………………………………….………2
Palliative Care and Counseling……………………………………………….4
Children of Terminally Ill Cancer Patients………………………….….……..6
Adolescents of Terminally Ill Cancer Patients………………………..………9
Family Communication…………………………………………………..….11
Social Support…………………………………………………………….….17
Effective Programs and Interventions………………………………………..19
III. Discussion………………………………………………………………………..22
Recommendations for Counselors and Professionals…………………….….22
IV. Conclusion……………………………………………………………………….23
V. References……………………………………………………………………..…25
iv
Abstract
Cancer rates in the United States continue to be staggering. It is also heartbreaking to
note that many of the adults confronting cancer are also parents of children. Parental
terminal cancer poses a threat to the psychological well being of the entire family.
Children are at a significantly higher risk for developing psychological disorders if their
psychosocial needs are not met during this crucial time. Communication is vital in
assisting children with their reactions to the illness and impending loss. Research has
shown that communication between family members, especially with children, and also
between medical professionals and families can often be lacking or complicated. This
paper will provide a literature review of the research that has been conducted on children
coping with parental cancer, along with a review of programs and interventions that have
been successful in meeting the needs of these children. Implications for counselors, along
with limitations of this paper, will be identified.
Psychosocial Needs of Children Coping with Parental Terminal Cancer in a
Hospital Setting
This paper will provide an overview of the prevalence of cancer and a review of
research conducted on the ways in which parental terminal cancer affects children and
adolescents. Children and adolescents’ stress responses, coping mechanisms, and factors
related to each will be examined. Research on communication between family members
and medical professionals will be explored with an emphasis on social support.
Interventions with families that have been successful will be reviewed, followed by
recommendations for future programs and implications for counselors.
The purpose of this research is to identify the psychosocial needs of families
coping with parental terminal cancer in a hospital setting and to describe effective
interventions during the specific period of palliative care. Palliative care is defined by the
World Health Organization as “an approach which improves the quality of life of patients
and their families facing life-threatening illness through prevention, assessment, and
treatment of pain and other physical, psychosocial, and spiritual problems” (Strada &
Sourkes, 2009, p.35). Information is limited on this topic, but this paper reviews the
current literature and analyzes the information, which identifies the increased mental
health risks of these family members. The current research, however, fails to agree on a
best standard of practice or best method of intervention. This project aims to offer a
program proposal of an effective intervention to be implemented into palliative care
treatments in a hospital setting.
2
Literature Review
Prevalence of Cancer
According to the American Cancer Society, 13.7 million people in the United
States in 2013 had a history of cancer. In 2013, approximately 1.6 million new cases of
cancer were expected to be diagnosed in Americans with well over a half a million
people dying from the illness (American Cancer Society, 2013). In 2006, an estimated 1.3
million people in the United States were diagnosed with cancer and about 5% of those
were in their child-rearing years (Grabiak, Bender, & Puskar, 2007). Another source
reports that 5% of children in the United States experience the death of one or both
parents by the age of 15. Although this percentage is not attributed specifically to cancer,
the massive rates of cancer deaths in the United States suggest that some of these parental
deaths were due to parental terminal cancer (Christ, Siegel, Freund, Langosh, Henderson,
Sperber, & Weinstein, 1993). With such large numbers of cancer diagnoses and deaths, it
is critical that clinicians work to understand its impact on children of those diagnosed
with terminal cancer.
While the terminal phase of cancer poses significant psychological threats for
both the patient and his/her family, it is important to note that all stages of a cancer
diagnosis and prognosis come with diverse psychosocial struggles. Each case is complex
and unique. Some cancer patients go into remission, some may go into remission several
times, and others may reach the terminal phase even if it is only a few months after the
initial diagnosis. It is important to understand that the terminal phase is only one stage on
an unpredictable continuum of a cancer diagnosis and that psychosocial struggles come
with every cancer diagnosis and every stage.
3
Coping begins the moment children are told about the diagnosis. Children in
Davey, Tubbs, Kissil & Nino’s (2010) study showed concern about how the cancer
diagnosis, particularly breast cancer in this study, would affect their futures. Ambivalence
about whether or not the cancer would go away, possibly return, or that the parent would
die was a common concern. Children’s initial reactions that are common to a cancer
diagnosis include shock, fear, and loneliness. Throughout the cancer prognosis, children
reported feeling sadness, worry, and fear especially during treatments. As a cancer
diagnosis worsens, children tend to feel a loss of safety and predictability, which is
common due to the tendency for cancer to have a complex course (Davey et al., 2010).
The first year after a diagnosis may be filled with emotional and behavioral problems
particularly for children, with 20-32% of adolescent children in this study experiencing
clinically elevated problems during this time. Even up to five years after a parent’s cancer
diagnosis, 21-35% of adolescents have been found to suffer from post-traumatic stress
symptoms (Visser, Huizinga, Hoekstra, van, Klip, Pras, & Hoekstra-Weebers, 2005).
Parental behavior changes with the diagnosis and prognosis, as well. Parents’
behavior tended to change with side effects of treatment and included irritability,
impatience, moodiness, and paranoia. The ill parent’s behavior altered in terms of energy,
physical strength, and emotional strength. Researchers conclude that parental frailty was
a significant cause of children feeling guilt and focusing more time on their home life by
remaining at home rather than participating in outside activities and taking on more
domestic responsibilities. A family’s mood, interpersonal conflict, and attitudes change
as a result of a cancer diagnosis, prognosis, hospital visits and treatment (Davey et al.,
2010). Hospital visits and treatment tend to interrupt daily family routines and cause
4
stress in the family, leading to increased negative psychological symptoms for the entire
family system (Visser et al., 2005).
With each case of cancer being vastly unique and complex, it is difficult to
summarize the effects of parental cancer on children at any stage of the diagnosis. This
paper attempts to further understand the effects of the terminal phase of parental cancer,
although it is important to note that the initial diagnosis along with the following stages,
prognosis, and treatment have significant effects on the entire family.
Palliative Care and Counseling
Before the terminal phase of cancer is reached, the patient undergoes either
curative or palliative care treatment. Palliative care can be provided in conjunction with
curative and life-prolonging treatment in order to minimize side effects. However, it may
also become the main focus of care when patients are no longer receiving active
treatment and approach the end of life (Strada & Sourkes, 2009). Palliative care focuses
on providing relief to terminally ill patients through symptom and pain management.
Terminal illness refers to an illness that is no longer able to be cured and therefore will
progress until it causes death. The goal of palliative care is not to cure but to provide
comfort and quality of life to terminally ill patients. Patients are generally assigned to
specific care teams who treat patients until death. In contrast, hospitals operate under a
medical approach in which patients are treated primarily by physicians and nurses with a
focus on curing the disease. When the goal of treatment is curing the illness, the death of
patients is regarded as a treatment failure, as opposed to the natural outcome of a terminal
illness (Bachner, O’Rourke, Davidov, & Carmel, 2009). When the two paradigms of
palliative care and medical approach are intertwined, doctors and nurses are confronted
5
with palliative care in a hospital setting, which can create obstacles, because both
approaches collide in circumstances where there is no dominating treatment modality.
Traditional psychotherapy and even present day counseling have not given major
focus to palliative care and patients/families dealing with advanced illness and ultimately
the death of a parent. Little is known about the complicated grief family members
experience prior to the loved one’s death. As family systems theory suggests, the
condition of one person in a system will affect the entire system, which ultimately
determines the systemic psychosocial functioning of a family. When a family member
has terminal cancer, not only the patient’s life is altered, but the entire family system is
affected (Faulkner & Davey, 2002). The well parent suffers from expected responses to
the diagnosis, possibly along with caregiver responsibilities for both the ill parent and the
children. The death of the ill parent poses a threat to the entire family system, and the
diagnosis and impending death have significant impacts on both the individuals’ and the
system’s well-being (Mazanec, Daly, Ferrell, & Prince-Paul, 2011). Younger caregivers
are at a higher risk for complicated grief pre-loss, suggesting that young families, or
families consisting of children under the age of 18, are especially in need of counseling
services. There is knowledge that family members and caregivers of terminally ill cancer
patients can experience depression, anxiety, sleep problems, fatigue, and increased risk of
mortality. Particular attention should be paid to children of parents with advanced cancer,
since the research that has been conducted on this population shows that the effects of the
illness on children can be catastrophic.
Children of Terminally Ill Cancer Patients
6
The importance of this research can be seen in knowledge previously gained from
studies, specifically in that children of terminally ill cancer patients suffer psychological
symptoms which in turn affects their coping strategies. Common symptoms in children
include changes in mood or self-esteem, academic changes, somatic symptoms, and
social and interpersonal changes such as acting out. Children of patients are more likely
to experience somatic manifestations of anxiety and emotional distress if their parents are
experiencing anxiety as well (Wong, Ratner, Gladstone, Davtyan, & Koopman, 2010).
Age, gender of the child, and gender of the parent all function as variables that influence
the symptoms experienced by children of an ill parent (Faulkner & Davey, 2002).
Differences in the ages of children also show differences in symptoms. Pre-school
aged children may experience separation anxiety, depression, and attachment issues while
school-aged children and adolescents may experience feelings of hopelessness, guilt,
burden, anger, or emotional isolation in adjusting to parental diagnosis (Wong et al.,
2010). Adolescents also reported having problems with the well parent, who at times
became emotionally overwhelmed, angry, and depressed about the spouse’s impending
death (Christ, Siegel, & Sperber, 1994). Symptoms in adolescents are much more
externalized, including behavioral problems when both parents had depressed mood;
maternal depressed mood was the main source of influence. In one study, family
functioning was significantly related to emotional and behavioral problems: lower family
cohesion, poor family communication, family affective-responsiveness, family affective
involvement, family behavioral control, and family general functioning predicted
adolescents’ externalizing problems (Grabiak et al., 2007). Differences in symptoms are
also seen across gender. While these are broad generalizations, there do seem to be some
7
patterns. When the mother is ill, daughters tended to change the quality of their
involvement resulting in a different type of closeness between them. Daughters of ill
mothers are also more likely to be concerned with their own genetic risks concerning
cancer, specifically breast cancer. Boys were more likely to isolate themselves from the
family (Christ et al., 1994).
Behavioral consequences can be seen in children of terminally ill cancer patients.
Children’s distress is often manifested in sleep disorders, somatic symptoms, inability to
concentrate at school, difficulty completing tasks and assignments, increased conflict
with family members, and conflict or withdrawal from both peers and adults. Behavioral
reactions were found to be manifested at home with parents and siblings and at school in
relation to educational performance, extracurricular activities, and peers. Children’s
distress was somewhat alleviated when clinicians emphasized the normality of these
reactions as well as involvement by the well parent in supporting the child. Parental
terminal cancer disturbs child’s entire world, so loss of peer relationships and activities
can exacerbate the child’s symptoms (Christ et al., 1993).
More severe reactions in young children include strong and frequent outbursts of
anger, sadness, and anxiety; suicidal thoughts; severe and prolonged decline in academic
performance or school behavior; severe and prolonged conflict with parents; intense
somatic symptoms. Some of the severely disturbed children in this particular study had
pre-existing behavioral or emotional problems. In other cases, the parent had pre-existing
psychological problems (Christ et al., 1993). Severe reactions in adolescents include
running away from home, stealing, drug abuse, and promiscuity (Christ et al., 1994).
8
Factors related to a child’s symptoms include length of the parent’s illness, guilt, and
fear for the well parent. When children expected remissions due to previous experiences
with the parent’s illness the children typically expressed greater disbelief at the terminal
stage. Depression and phobic symptoms were also common responses. Other children
confronting a shorter period of terminal illness experienced panic and anxiety due to the
parent’s quick deterioration, physically and in appearance. Younger children often
showed preoperational magical thinking. The preoperational stage is a cognitive
development stage developed by Jean Piaget that marks a period of cognitive
development in children age two to seven. The children’s magical thinking focused on
personal responsibility for the parent’s illness, which produced intense emotional
reactions of guilt (example, kids can make their parents ill by misbehaving). The children
often felt responsible and guilty for their ill parent’s anger, withdrawal, and lack of
affection which may in reality be attributed to the rigor of the illness. Children often
expressed elevated concern for the well parent, with whom they had come to feel
increasingly dependent. Latency-age children’s, ages four to whenever the child reaches
puberty, most pertinent fear, associated with their psychosocial stage, was that of
separation from the parent. Their anxieties were heightened by their observation of the
well parent’s irritability, sadness, fatigue, depression, and anxiety. Younger children had
a significant need of reassurance that these were only temporary reactions from the well
parent due to the patient’s illness and prognosis (Christ et al., 1993).
The symptoms experienced by children also negatively affect their coping skills.
Latency-age children tend to identify with the ill parent and become frightened by the
parent’s physical pain and appearance (i.e. loss of weight and hair). Latency-age children
9
also sometimes experience somatic symptoms themselves. Adolescents, on the other
hand, are able to empathize with their ill parent’s pain have a heightened desire to lessen
this pain. This empathy can become overwhelming to the adolescent and cause the
adolescent to avoid contact with the ill parent. Preadolescents sometimes deal with their
empathic sense of the parent’s distress by becoming angry with hospital staff and
believing that the medical professionals are causing the pain or not properly treating the
illness (Christ et al., 1994).
Adolescents of Terminally Ill Cancer Patients
Adolescents developmentally have increased empathic skills and intellectual abilities.
Coping abilities in adolescents are related to three areas of functioning associated with
their increase skills: the use of intellectual defenses, the search for meaning and deeper
understanding, and the ability to seek help. The formal operational stage of cognitive
development, also part of Piaget’s cognitive development stages, allows adolescents to
use intellectual defenses to gain a greater sense of control over the impending parental
death; control in this sense is related to intellectual understanding of the terminal course
of the illness. In a specific study, adolescents were aggressive and assertive in seeking
information, possibly due to their intellectual defenses. Even when the information
sought was correct, adolescents tended to distort the information as a result of cognitive
regression. This regression occurred because the adolescent felt emotionally
overwhelmed or his/her lack of life experiences created an obstacle to fully understanding
the information. Adolescents can conceptualize the meaning of parental loss in more
abstract terms than latency-age children, who tend to worry about concrete needs, i.e.
“who will teach me baseball if dad dies?” Adolescents tend to worry about abstract
10
aspects of their relationship with the ill parent, like the loss of the parent’s personality
qualities like his/her sense of humor, changes in family roles, and the effect of the death
on the family’s financial situation (Christ et al., 1994). As compared to pre-pubertal
children, adolescents’ more advanced cognitive abilities lead them to deal with their
intense psychological responses with emotional detachment. To control their emotions,
reactions to the illness are sometimes kept separate from their normal daily experiences
(“strategic withdrawal” – which, in follow-up studies, was found to be used by
adolescents who had best adapted). Adolescents are also in a psychosocial stage where
identity and independence from parents is being explored, therefore resuming normal
developmental activities can be a helpful distraction for adolescents during the parent’s
terminal stage (Christ et al., 1994).
Common problems characterize adolescents’ reactions to a parent’s worsening
condition as the terminal illness progresses including empathy for the parent’s suffering,
increased involvement with the ill parent, increased responsibilities at home, and feelings
of guilt. Adolescents experienced increased household responsibilities, including caring
for the patient and more household chores; however this tended to affect females more
than males due to traditional gender roles, while males tended to seek outside jobs to
support the family (Christ et al., 1994). Emotion-focused coping is related to greater
avoidance and to higher symptoms of anxiety/depression in the adolescent (Grabiak et al.,
2007). Many children used distraction as the most common form of coping and preferred
engaging in routine or normal activities to distract themselves from ruminating on their
parent’s illness (Kennedy & Williams, 2009a). Adolescents in this study reported that
people from the community were helpful in supporting the family, like neighbors
11
bringing meals, but did not offer them personal or emotional support (Grabiak et al.,
2007). Many children reported needing to talk to someone outside of the family about the
illness but felt like this support was not available. Children also reported not wanting to
worry their parents with their own needs, hence highlighting the importance of open
communication during this time (Kennedy & Williams, 2009a).
Family Communication
One of the most important reasons families need open communication during a time
of parental advanced cancer is the reality that many of the emotional reactions of many
family members, specifically pre-pubertal children, are tied to misconceptions of the
disease and its treatment. It is not unusual for latency-age children to have
misconceptions about the parent’s illness and treatment, especially due to their cognitive
developmental stage. Children’s misconceptions are sometimes more extreme or dire
than the actual reality of the situation. These distortions often shape emotional reactions,
which further interfere with their understanding of the terminal illness. It is necessary to
understand how their developmental cognitive abilities both limit and influence
perceptions of the illness. Most latency-age children cannot understand the complexities
of constantly changing medical information, which is common with a cancer diagnosis.
As is usual with preoperational thinking patterns, younger children may find it difficult to
describe situations related to the parent’s illness and organizing sequences of events. As
mentioned earlier, many children tend to make inaccurate causal connections related to
the illness, usually due to magical thinking. Cognitively and emotionally, children need
explicit, concrete, and definitive information, which is difficult when the course of a
cancer diagnosis can be so fluctuating. Ambiguous statements made by both parent
12
and/or clinicians confuse children and may lead to misinterpretation. Concrete,
operational children age seven to about eleven, as described by Paiget’s cognitive
development theory, gain a better understanding of mental operations and have increased
logic skills. These children are more cognitively inclined to take information and infer a
“yes” or “no,” for example that yes the chemotherapy will cure the cancer. Parents’
communications can sometimes be too general and not developmentally appropriate for
the child (Christ et al., 1994).
Children sometimes interpret the side effects of cancer treatment as evidence that it
was working. In situations like palliative care where a patient’s pain and symptoms may
be alleviated but not cured, children may infer that it is evidence that the patient is getting
better. In some studies when parents were able to be informed and therefore comprehend
that these misconceptions were due to the child’s developmental stages, they could help
to better understand the child’s perception and attempt to clarify the reality of the
situation in developmentally appropriate manners (Christ et al., 1993).
The majority of discussions about a patient’s condition occur between adults and
medical professionals. Children have a minimal role in communication about the illness,
especially from the medical staff who use complicated terminology and tend to direct the
information to the patient and spouse. While some children have reported no desire in the
decision making of treatment others wished to be involved. Involving children in the
decision making process varies by the child’s wishes and should therefore be taken into
consideration in each unique circumstance, although communication about the illness
should always be included (Coyne & Gallagher, 2011). Being outspoken and asking
children what aspects of the illness and treatment they wish to be informed of along with
13
guidance from professionals about developmentally appropriate information can help to
determine an appropriate level of detail to include in the discussion with the child (Wong
et al., 2010). A child should never be completely restricted from receiving information
about his/her parent’s condition before death but should be respected in his/her desires to
be involved in the decision making processes. The involvement of children, however,
seems to be vital when providing effective family-based interventions and therefore
requires further research.
Communication during parental terminal illness lessens anxiety. Despite parents’
intention of protecting children from further worry, avoidance of any discussion of the
illness or treatment often contributes to children’s anxiety. While these conversations can
be difficult for both parents and children, it does not mean that they are not perceived as
supportive (Wong et al., 2010). Good family functioning is correlated with open
communication between family members and less distress among adolescents (Lindqvist,
Schmitt, Santalahti, Romer, & Piha, 2007). Therefore even without an illness, open
communication is an important component for healthy family functioning and is even
more vital during a parent’s terminal illness. Studies have related quality of
communication and whether children have been informed about the illness to children’s
levels of anxiety. Even with the acknowledgment of these correlations, studies have
shown that many children are not told when a parent’s illness has turned terminal.
Reasons for this lack of communication include parents (both well and the patient) being
unaware of the fact that their children are experiencing distress, fears of emotionally
breaking down in front of children, guilt about not being able to fulfill their parenting
role, grief over lost opportunity to see their child grow up (specific to the ill parent) and
14
not wanting to further anguish their child. Cohen et al. (1977) found that 50% of children
under the age of 8 only found out that their parents were going to die in the terminal
phase, meaning communication in those situations failed to include children until the
illness was nearing death (Kennedy & Lloyd-Williams, 2009b). It is vital for both parents
and clinicians to be aware that willingness to communicate about the illness openly
increases children’s resilience and sense of well-being and should therefore be
incorporated early on in the parent’s illness. (Wong, Ratner, Gladstone, 2010).
Research indicates that adolescents are usually informed about a parent’s impending
death soon before the death approaches (Sheehan & Draucker, 2011). The terminal phase
of an illness refers to three to six months prior to death of the patient, yet it is
recommended that information about the parent’s prognosis be provided soon after the
diagnosis rather than closer to the patient’s death (Christ et al., 1993). In some studies,
adolescents came to know the ill parent was going to die through overhearing
conversations with medical professionals and other family members rather than direct
conversations. Children could also see the physical deterioration of the parent as a sign
that the prognosis may be turning terminal. Withholding medical information, even if the
objective is protecting a child from distress, correlates with lower family cohesion and
poorer parental wellness (Wong et al., 2010). All children interviewed in this particular
study wanted to be included in communication about the illness in order to be prepared
for the future and feel included in the family’s situation. All children wanted information
about their parent’s condition therefore communication is vital for this information to be
exchanged. The initial stages after the parent’s diagnosis was identified as the time in
which children needed the most information, particularly with regards to the disease itself
15
and what treatments the parent would be undergoing. At later stages there was more need
for information regarding how to help their parents, both the ill and well parent (Sheehan
& Draucker, 2011). Once the terminal phase is reached, preventative interventions for the
family should be implemented which will be discussed later in this paper.
Communication involves more than the giving of information. Communication
includes support as well. Adolescents identified parents, support groups, physicians,
school and media as their main sources of information with parents being the main
identified source of information. Adolescents did report a fear that parents were
withholding information to protect them from further distress. Adolescents wished to
receive concrete and specific information as the illness progressed. Although most
children felt that they could ask questions about the illness to their parents, they were
concerned that they might upset them which therefore created a barrier in
communication. Children become skilled in hiding the information they know from
parents, who often assume that the lack of questions or discussion on the child’s part
indicates unawareness. The simple sharing of information may be more important to a
child than the content of the information being communicated. When children felt that
information was being withheld they described a need for receiving it or seeking it
elsewhere, such as through media sources. While the Media has a copious amount of
information, whether correct or not, children perceived medical professionals to be the
most valuable sources of information regarding the disease. Obstacles children faced
when attempting to gain information from medical professionals included lack of access
as well as developmentally inappropriate ways of explaining the disease and treatments to
children, again highlighting the importance of developmentally appropriate
16
communication not only by parents but also by medical professionals. Adolescents in this
particular study felt that their need for information was unmet. When seeking information
or support from people outside of the family, adolescents also faced obstacles. Children
experienced other people’s awkwardness about the topic and insensitivity in hearing
about the illness. Although many children wished to confide in someone outside of the
family other than neighbors, friends, etc. (healthcare professionals, clinicians), this
opportunity was rarely presented. (Kenney & Lloyd-Williams, 2009a). The information
from these studies strongly supports the need for children of terminally ill parents to
receive specific, detailed information and also have people around to support them after
this information is exchanged.
In their study with family members of cancer patients, Krant and Johnston (1977)
reported that 92% thought about their relative’s impending death but only 22% discussed
this with the patient. Vess, Moreland, Schwebel and Knaut (1988) suggest that family
members and patients commonly engage in “mutual protective buffering” or avoidance of
discussion of fears and concerns in order to protect one another, although research
reviewed earlier in this paper has shown that communication of the illness lessens anxiety
and future pathology. Of course a family’s pre-existing communication patterns and
psychosocial functioning affect the quality of communication during the patient’s illness
(Bachner et. al, 2009). While considering pre-existing communication patterns and
functionality, open communication still appears to predict higher levels of empathy and
intimacy between patients and their spouses, higher levels perceived support by the
patients, and reduced feelings of caregiver burden from family members. Bachner and
Carmel (2007) report an inverse association between open communication and negative
17
affect (emotional exhaustion and depressive symptoms) among family members but
specifically caregivers of the patient. This research supports the notion that open
discussion of family member’s thoughts and feelings regarding the patient’s illness and
eventual death may facilitate meaningful interpretation of the experience and emotional
acceptance of the loved one’s impending death (Bachner et. al, 2009).
Social Support
Social support is necessary during the impending loss of a parent. Social support
refers to the quality and function of social relationships. Aside from family members,
social support can be given by medical professionals, nurses, hospital staff, community
members and family friends. Social support includes specific communication about the
disease itself, treatments, and also the progression of the disease, which is reported to
lessen feelings of confusion, helplessness, and seclusion. Again, exchanging information
in a developmentally appropriate manner cannot be emphasized enough. A family’s level
of connectedness, abilities to express emotions and feelings, and flexibility impact the
effectiveness of the social support it receives. Adolescents who perceived receiving
strong social support also experienced less depressive symptoms after the loss of their
parent (Wong et al., 2010).
There are four different domains of social support: information and advice, tangible
assistance, encouragement and reassurance, and listening and understanding. Problems
occur when a child seeks support from medical professionals but the skill of the
professional is not meeting those needs. Based on previous research reviewed earlier in
the paper, many medical professionals fail to adequately communicate with children and
children who seek valuable information from medical professionals. This creates a
18
mismatch in which children are seeking important information from professionals who
tend to not include children in the treatment plan of the patient. It is also vital for those
giving social support to understand the difference between healthy responses to the
parent’s illness versus pathological responses. The child may perceive misunderstanding
of his/her emotional experiences as insincere and therefore an ineffective form of support
(Wong et al., 2010).
Two models that conceptualize the impact of social support are the main-effect
model and stress-buffering model. The main-effect model views social support as the
everyday support we receive from our social circles, or the support we seek when we are
having a bad day. The stress-buffering model of social support views support as needed
or desired only when individuals are under stress. This model views the support as
specific to a certain stressor or event, such as a parent being diagnosed with terminal
cancer. An example of stress-buffering social support is neighbors bringing over dinners
while a sick parent is in the hospital. Both forms of social support are present when
children are dealing with the terminal illness of a parent and both are necessary from
members outside of the family to help the family maintain functioning (Wong et al.,
2010).
The importance of communication between family members but also between the
family and nurses/physicians is crucial in supporting a family that is experiencing
terminal illness. Communication by healthcare providers regarding the illness, prognosis,
and treatment options are often inadequate (Yennurajalingam , Dev, Lockey, Pace,
Zhang, Palmer, & Bruera, 2008). Barriers to the end of life discussion by medical staff
include nurses’ and physicians’ inexperience in dealing with death and dying, lack of
19
cultural awareness, unrealistic expectations by the patients and/or family members (i.e. it
is the doctor’s fault that the patient is dying; there is more the professionals could have
done), difficulty of predicting the timing of death, levels of stress experienced by patients
and family members during the terminal phase, lack of communication in the family, and
a perceived lack of social support by the family and patient. Honest and timely
communication by the medical professionals is crucial in helping the family to
understand that palliative care in a hospital setting is not giving up on treating the disease
but instead realizing that curative measures are no longer working and therefore the goal
is to make the end of life process as comfortable as possible for the patient (Clabots,
2012).
Effective Programs and Interventions
Information that has been collected through the reviewed research suggests that
families are in need of psychosocial support and there is no concise agreement on the best
method of intervention to meet these needs. Although many programs have succeeded in
showing effectiveness, there is a lack of concrete procedures to be used in everyday
practices.
There are few hospitals where palliative care includes counselors as most instead
rely on social workers, chaplains or advanced practiced nurses. The Medical Center of
Central Georgia developed the Transitions and Palliative Care Therapy Model, which
uses a family systems approach and has the counselor at the heart of the palliative care
team. This model is now an accepted standard of practice at the center and has proven to
be a successful intervention that has shown positive results in this specific hospital. The
question remains whether we can generalize some of the program’s most effective
20
methods into a nationwide or global best method of intervention (Babock & Robinson,
2011).
Many intervention programs implemented in Europe are part of Children of
Somatically Ill Parents (COSIP). Interventions that are included in COSIP focus on the
challenges children face when a parent is ill and works to alleviate the children’s distress.
The interventions promote active coping skills, improve children’s understanding of the
illness, work to create a sense of hope, normalize responses to the illness and reduce
feelings of guilt, identify and advocate for using available resources, and facilitate the
overall process of grief. Interventions of this nature have shown positive results, reporting
significant decreases in children’s depression. The interventions also reported positive
changes in children’s cancer related worries (Niemala, Hakko, & Rasanen, 2010).
Kids Can Cope and The Enhancing Communication Program are two intervention
programs aimed at school-age children and adolescents. Kids Can Cope is based in
Arizona’s Banner Thunderbird Medical Center and focuses on teaching children about
cancer as a disease, along with the several different ways it can be treated. Social workers
help to provide children with the opportunity to meet with peers and share their questions
and concerns about cancer in a safe environment while also increasing coping skills. The
program uses creative art activities and interactive games to create a fun and supportive
environment for children to relate to one another, learn about the disease, and feel
comfortable asking questions (Taylor-Brown, Acheson, & Farber, 1993). The Enhancing
Connections Program located in Washington aims more toward children’s responses to
parental cancer, focusing on reducing cancer-related worries (Lewis, Casey, Brandt,
Shands, & Zahlis, 2006). Feedback from the adolescents who participated in this program
21
suggested that the groups include both male and females invited within four months of
the parent’s cancer diagnosis, promoting a shared sense of experience and therefore
connectedness. Adolescents also suggested that the program teach coping skills specific
to each gender and tailored to ethnic and racial backgrounds. Family therapy sessions to
promote open communication in the family were also requested by the adolescents. This
program revealed significant improvements in children’s negative symptoms including
decreased behavioral problems, decreased cancer-related distress, and decreased anxiety
and depression (Grabiak et al., 2007).
The Transitions and Palliative Care Therapy (TPCT) Model takes a multi-
disciplinary approach with a team comprised of a medical staff leader, nursing leader,
medical social worker, pain management specialist, pastoral care representative and an
administrator. By having a strong counseling base rather than an emphasis on advanced
care, TPCT model integrates family systems therapy into medical practice. The
intervention uses transitions counselors to provide family therapy in the medical setting.
Transitions counselors are counselors who have earned a master’s degree from schools of
family therapy and counseling, and therefore have knowledge of counseling and the
counseling process. In order to be educated on the disease, counselors attend weekly
interdisciplinary palliative care rounds and intensive care unit’s surgical unit rounds
where they receive knowledge of treatments, medical issues, and specific disease
processes. Physicians and nurses tend to not have the time to contribute to patients’ and
families’ emotional and psychosocial experiences. By having knowledge of the disease
and its possible trajectory counselors can provide families with accurate information from
a collaborative team of physicians, increasing the efficiency of communication between
22
medical professionals and families. This model is cost effective as it uses counselors at
the heart of the intervention, who are hired at a much lower cost than medical staff
(Babcock & Robinson, 2011).
A six-month study in which Medical Family Therapists (MedFTs) were integrated
into an outpatient oncology unit showed significant positive results in negative symptom
reduction for both patients and family members. MedFTs utilize a biopsychosocial and
spiritual model to address the whole family’s needs during a cancer illness. MedFTs
focus on improving communication within families, accommodating structural changes
occurring in the family due to the illness, facilitate a sense of meaning, and address
impending loss of the patient. In this study, 90% of patients experienced a decrease in
emotional suffering and 91% of patients and family members reported that the MedFT
was helpful in connecting them with personal and community resources (Hodgson,
McCammon, & Anderson, 2011).
Discussion
Recommendations for Counselors and Professionals
As research has shown, including clinical social workers or counselors in the team
of professionals who work with patients and families of terminal cancer provides
increases in effective communication, improved family functioning, and negative
symptom reduction in family members both before and after a patient’s death.
Counselors should initiate interventions three to six months into the terminal phase of the
illness, depending on the expected length of life. Studies support that this time period is
when children experience significantly higher levels of depression and anxiety and lower
social competence, therefore children’s distress is increased and social support is lacking.
23
Parents also experience increased distress during this time and decreased confidence in
parenting skills. This time period is a significant time for increasing support to all family
members (Christ et al., 1993).
Counselors working in medical settings must be able to adopt a flexible
framework due to the constant modifications of treatment and illness prognosis evident in
cancer diagnoses. Case conceptualizations will change frequently (Strada & Sourkes,
2009). Simply listening is not sufficient in providing effective interventions. Counselors
should be skilled in empathic listening, provide encouragement and reassurance, be
comfortable with exploring grief reactions, and be able to communicate with the patient
and family about the illness and its treatment (Wong et al., 2010). Statements that help to
normalize the experiences of children should be included in communication with children
and adolescents of the patient (Christ et al., 2010). A range of interventions should be
tailored to a family’s specific situation, including psycho-education, individual and
family counseling, and grief counseling to both patients and family members. Long-term
as well as short-term approaches should be considered, ranging from existential and
insight-oriented approaches to cognitive behavioral focuses. Including the whole family
in interventions helps to support the patient, support the family member’s anticipatory
grief, and can help the family to process the experience and feelings of ambivalence that
come with a terminal diagnosis (Strada & Sourkes, 2009).
Conclusion
With the staggering rates of cancer and the percentage of those diagnosed who
have children, the psychological well being of cancer patients’ families, and specifically
their children, is a significant issue that has long gone unexamined. Research has shown
24
that children of terminally ill cancer patients experience significant psychological distress
that, if left untreated, can manifest into psychological disorders rather than situational
congruent responses. A lack of communication between family members, as well as
between medical professionals and children, creates a gap in which misconceptions of the
illness and psychological distress tend to fill. Counselors should be included in hospital
based palliative care teams as a way to bridge the gap in communication between medical
professionals and families and to provide psychosocial support during a crucial time of
need. In providing these services, negative psychological impacts on the family, and
especially children, will be reduced. Counselors are a cost efficient addition to the multi-
disciplinary team in terminal care and will also provide preventative services by
effectively intervening with families at the appropriate time.
Limitations in most studies and in this literature review include a lack of focus on
the gender of the diagnosed parent, race, ethnicity and age of diagnosed parent,
socioeconomic status of families, specific cancer diagnoses, and pre-existing family
psychosocial functioning. Further research is needed to include these factors into our
knowledge base.
25
References
American Cancer Society. Cancer Facts & Figures 2013. Atlanta: American Cancer
Society;
2013.
Babcock, C. W., & Robinson, L. E. (2011). A novel approach to hospital palliative care:
An expanded role for counselors. Journal of Palliative Medicine, 14(4), 491-500.
doi:10.1089/jpm.2010.0432
Bachner, Y. G., O'Rourke, N., Davidov, E., & Carmel, S. (2009). Mortality
communication as a predictor of psychological distress among family caregivers of
home hospice and hospital inpatients with terminal cancer. Aging & Mental Health,
13(1), 54-63. doi:10.1080/13607860802154473
Christ, G. H., Siegel, K., Freund, B., Langosch, D., Henderson, S., Sperber, D., &
Weinstein, L. (1993). Impact of parental terminal cancer on latency-age children.
American Journal of Orthopsychiatry, 63(3), 417-425. doi:10.1037/h0079451
Christ, G. H., Siegel, K., & Sperber, D. (1994). Impact of parental terminal cancer on
adolescents. American Journal of Orthopsychiatry, 64(4), 604-613.
doi:10.1037/h0079569
Clabots, S. (2012). Strategies to help initiate and maintain the end-of-life discussion with
patients and family members. MEDSURG Nursing, 21(4), 197-204. Retrieved from
http://search.ebscohost.com/login.aspx?direct=true&db=rzh&AN=2011657169&site
=ehost-live&scope=site
26
Coyne, I., & Gallagher, P. (2011). Participation in communication and decision-making:
Children and young people's experiences in a hospital setting. Journal of Clinical
Nursing, 20(15), 2334-2343. doi:10.1111/j.1365-2702.2010.03582.x
Faulkner, R. A., & Davey, M. (2002). Children and adolescents of cancer patients: The
impact of cancer on the family. American Journal of Family Therapy, 30(1), 63-72.
doi:10.1080/019261802753455651
Grabiak, B. R., Bender, C. M., & Puskar, K. R. (2007). The impact of parental cancer on
the adolescent: An analysis of the literature. Psycho-Oncology, 16(2), 127-137.
Retrieved from
http://search.ebscohost.com/login.aspx?direct=true&db=a9h&AN=23969330&site=e
host-live&scope=site
Hodgson, J., L., McCammon, S., L., & Anderson, R., J. (2011). A conceptual and
empirical basis for including medical family therapy services in cancer care settings.
American Journal of Family Therapy, 39(4), 348-359.
doi:10.1080/01926187.2010.537944
Kennedy, V. L., & Lloyd-Williams, M. (2009). How children cope when a parent has
advanced cancer. Psycho-Oncology, 18(8), 886-892. doi:10.1002/pon.1455
Kennedy, V. L., & Lloyd-Williams, M. (2009). Information and communication when a
parent has advanced cancer. Journal of Affective Disorders, 114(1–3), 149-155.
doi:http://dx.doi.org/10.1016/j.jad.2008.06.022
27
Lewis, F. M., Casey, S. M., Brandt, P. A., Shands, M. E., & Zahlis, E. H. (2006). The
enhancing connections program: Pilot study of A cognitive-behavioral intervention
for mothers and children affected by breast cancer. Psycho-Oncology, 15(6), 486-
497. doi:10.1002/pon.979
Lindqvist, B., Schmitt, F., Santalahti, P., Romer, G., & Piha, J. (2007). Factors associated
with the mental health of adolescents when a parent has cancer. Scandinavian
Journal of Psychology, 48(4), 345-351. doi:10.1111/j.1467-9450.2007.00573.x
Mazanec, P., Daly, B. J., Ferrell, B. R., & Prince-Paul, M. (2011). Lack of
communication and control: Experiences of distance caregivers of parents with
advanced cancer. Oncology Nursing Forum, 38(3), 307-313. Retrieved from
http://search.ebscohost.com/login.aspx?direct=true&db=a9h&AN=60297905&site=e
host-live&scope=site
Niemelä, M., Hakko, H., & Räsänen, S. (2010). A systematic narrative review of the
studies on structured child-centred interventions for families with a parent with
cancer. Psycho-Oncology, 19(5), 451-461. doi:10.1002/pon.1620
Sheehan, D. K., & Draucker, C. B. (2011). Interaction patterns between parents with
advanced cancer and their adolescent children. Psycho-Oncology, 20(10), 1108-
1115. doi:10.1002/pon.1831
Strada, E. A., & Sourkes, B. M. (2009). Psychotherapy in the palliative care setting.
Primary Psychiatry, 16(5), 34-40. Retrieved from
28
http://search.ebscohost.com/login.aspx?direct=true&db=a9h&AN=41129515&site=e
host-live&scope=site
Taylor-Brown, J., Acheson, A., & Farber, J. M. (1993). Kids can cope: A group
intervention for children whose parents have cancer. Journal of Psychosocial
Oncology, 11(1), 41-53. doi:10.1300/J077V11N01_03
Visser, A., Huizinga, G. A., Hoekstra, H. J., van, d. G., Klip, E. C., Pras, E., & Hoekstra-
Weebers, J. (2005). Emotional and behavioural functioning of children of a parent
diagnosed with cancer: A cross-informant perspective. Psycho-Oncology, 14(9),
746-758. Retrieved from
http://search.ebscohost.com/login.aspx?direct=true&db=a9h&AN=18373533&site=e
host-live&scope=site
Wong, M., Ratner, J., Gladstone, K. A., Davtyan, A., & Koopman, C. (2010). Children’s
perceived social support after a parent is diagnosed with cancer. Journal of Clinical
Psychology in Medical Settings, 17(2), 77-86. doi:10.1007/s10880-010-9187-2
Yennurajalingam, S., Dev, R., Lockey, M., Pace, E., Zhang, T., Palmer, J. L., & Bruera,
E. (2008). Characteristics of family conferences in a palliative care unit at a
comprehensive cancer center. Journal of Palliative Medicine, 11(9), 1208-1211.
doi:10.1089/jpm.2008.0150
