Running head: EFFECTS OF CHILD MORTALITY

Effects of Child Mortality Following Pediatric Cancer on Family Function: With an Emphasis on
Family Stress Theory
Yessenia Mata
University of North Texas

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Introduction
According to Long and Marsland (2011), 14,000 children and teenagers in the United
States are diagnosed with childhood cancer annually. Studies have also indicated that diagnosis
of pediatric cancer has distressing physical and emotional effects on the family and patient
(deCinque, Monterosso, Dadd, Sidhu, & Lucas, 2004). In order to meet the needs of the child
diagnosed with cancer, family responsibilities and roles are reorganized; resulting in an altered
family structure. Families of pediatric cancer patients experience different courses of
progression, stability, and deterioration in unity, spouse relationship, and parenting. Side effects
due to treatment procedures such as vulnerability to infection, hair loss, mood swings, nausea,
and others not only influence the patient but also impact family functioning completely. As well
as adapting to treatment side effects, families also have to adjust to the unpredictable nature of
the disease and acknowledge the probability that the patient might not survive (Long &
Marsland, 2011).
Hinds, Schum, Baker, and Wolfe, (2005) stated that one of the stress factors was the end
of life care given to a child diagnosed with cancer; which had a quick and lasting effect on
bereaved family members. About one fourth to one third of parents who lost a child to cancer
described having experienced marital stress. To add, more than one third of bereaved siblings
reported being unable to adapt; consequentially they suffered health problems and had trouble
establishing friendships. Research also indicated that if parents held that their child suffered
when passing away, this perception directly influenced parenting roles during and after death
(Hinds et al., 2005).
Hinds et al. (2005) also explained that grief related with child mortality had a high risk in
resulting in what is known as complicated bereavement. According to Hinds et al. (2005),
bereavement is a recognized stressor that impacts the social, psychological, and physical

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characteristics of an individual in negative ways. This is why family resilience and
communication are important concepts influencing a familys response towards a non-normative
event.
Overall, scholars have recognized the negative effect that pediatric cancer and childhood
mortality has on family structure. As a result, this acknowledgement has led to an establishment
of psychosocial support in combination with medical interference (deCinque, Monterosso, Dadd,
Sidhu, & Lucas, 2004).
Based on Family Stress Theory as a theoretical framework, this paper examines how
families cope with child mortality subsequent to pediatric cancer and how family stress theory
applies to such situations.
Theoretical Review
According to researchers, Hill presented the ABC-X model based on family stress theory
in 1949 (Greeff, Vansteenwegen, and Herbiest, 2011). In the model, A represents the stressor, B
represents the sources available to the family, C represents the familys interpretation of the
event, and X represents the crisis. Rather than assuming that individuals hold a universal
meaning of death, scholars argue that because each family has a unique set of beliefs & values,
each experience is different; some unexpected. (Titus & de Souza, 2011). An event such as the
death of a child is also referred as a non-normative stressor. Non-normative stressors such as a
terminal illness or child death are not expected and individuals experiencing these stressors are
uncertain about the path it will take. As a result this causes anxiety, instability and stress that may
transform into crisis. (Betz & Thorngren, 2006).

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Literature Review
End of life family caregiving
Bainbridge (2009) defines end of life family caregiving as the voluntary delivery of
services outside a formal establishment to a mentally or physically impaired family member.
According to research, such caregivers usually live with the patient involved. In addition the
stress associated with this type of care usually has a deep impact on the individual whos more
attached to the dying patient.
Due to being the primary caregivers of children diagnosed with cancer, research has
shown that parents demonstrated increased symptoms of distress along with some marital
conflict after one year of the diagnosis (Alderfer, Long, Lown, Marsland, Ostrowski, Hock, &
Ewing, 2010). Studies have also suggested that the requirement of one parent to attend the ill
child in different settings causes the parent to be unavailable to the remaining siblings. In
consequence, siblings of ill children are influenced negatively in social and emotional domains.
Changes within household responsibilities may also change with siblings being more
accountable for chores. When applied to non-normative events such as end of life caregiving,
researchers define stress or the stressor as the lasting consequences of caregiving liability.
(Bainbridge, 2009)
In one recent study, the influence of non-normative caregiving on families was examined.
Participants included ten family caregivers selected from a palliative care department in Sweden.
(Carlander, Sahlberg-Blom, Hellstrm, & Ternestedt, 2011). Eligibility for this study required
having cared for the patient at home for more than four weeks. The ten participants included six
spouses, one sister, and three daughters. The method involved sixty to ninety minute interviews
given to each caregiver after six months of the patients death. Interview questions asked
participants to describe their life when caring for the patient diagnosed with cancer and to state

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whether they had to make modifications on their self-image at that time. Data was gathered
through recordings and then transcribed word for word. Findings suggested that caregivers of a
dying relative exhibited three patterns: limits stretched, interdependency, and challenged morals
(Carlander et al., 2011).
Resilience and psychological health
According to Rosenberg, Baker, Syrjala, Back, and Wolfe, (2013), the mental health of
parents can affect the manner in which a family facing adversity functions. This includes
influencing the remaining life quality of the child diagnosed with cancer as well as the siblings
involved. Researchers emphasized the importance of minimizing parent distress. Minimizing
parent distress involved demonstrating optimistic characteristics and positive thoughts or
perceptions about the cancer experiences. In turn, research has indicated an existing relationship
between being optimistic and psychological health. Rosenberg et al. (2013) defined the term
resilience as the ability to tolerate stress, overcome difficult events, or succeed during hardships.
In a recent study, Greeff, Vansteenwegen, and Herbiest, (2011), described the qualities
indicating a familys resilience after experiencing the loss of a child due to cancer. Participants
included 89 parents and 67 siblings of children who had passed away from cancer. Eligibility to
participate in the study included the time since the death of the child being 3 to 6 years later. The
method involved having one parent and one sibling of the deceased child fill out 6
questionnaires. One questionnaire involved providing biographic and demographic information.
Seventy eight percent of the participants involved were females while twenty two percent were
males. The Family Sense of Coherence Scale was utilized to measure family adaptation. The
results indicated a strong link between adaptation of family members and perceiving the death of
the child as a challenge (Greeff, Vansteenwegen, & Herbiest, 2011).

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Communication
Researchers Titus and de Souza, (2011) state that when a child is diagnosed with a
terminal illness and subsequent death occurs, family members are left to make meaning of the
event. In turn, communication among family members is part of the grieving and healing
process. Traylor et al. (2003) explained that communication refers to the aspect of expressing,
sharing, and discussing feelings about a situation. In sharing narratives about the child, relatives
express feelings towards the child and reconstruct meaning of the situation. (Titus & de Souza,
2011)
In one study, scholars utilized qualitative analysis to document he efficacy of
communication among family members when loosing a child to a terminal illness. Participants
included 10 parent volunteers from two hospitals located in the Midwest. Each parent had
experienced the death of a child 1-5 years before forming part of the research. The age of the
children who had passed away ranged from 5 days old to 17 years old. In addition, the children
had experienced the terminal illness for a length of 5 days to 10 years. The method involved
mailing packages and having parents fill out their response to four different prompts based on
their life narratives. The findings suggested that chaos had entered their lifestyles and family
roles immediately after their child was diagnosed with the terminal illness. The findings also
suggested that sharing their thoughts on the childs death assisted in the grieving process.
Limitations in this study included an unequal representation of gender. Only ten males who
received the package responded to the prompts. (Titus & de Souza, 2011)

Conclusion

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When examining the effects of pediatric cancer followed by child mortality on family
structure, research has demonstrated an association with family stress theory to describe different
changes and coping mechanisms. Although every individual will experience the death of a
relative at some point in life, the loss of a child is a not anticipated event. With that being said,
its essential for professionals and individuals in the counseling and child life field to consider
family stress theory along with coping mechanisms such as resilience and communication, when
working with families.

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References
Alderfer, M. A., Long, K. A., Lown, E. A., Marsland, A. L., Ostrowski, N. L., Hock, J. M., &
Ewing, L. J
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review. Psycho-Oncology, 19(8), 789-805. doi:10.1002/pon.1638
Bainbridge, D. K. (2009). Stress processes in caring for an end-of-life family member:
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Carlander, I., Sahlberg-Blom, E., Hellstrm, I., & Ternestedt, B. (2011). The modified self:
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deCinque, N., Monterosso, L., Dadd, G., Sidhu, R., & Lucas, R. (2004). Bereavement support for
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Long, K. A., & Marsland, A. L. (2011). Family Adjustment to Childhood Cancer: A Systematic
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Rosenberg, A. R., Baker, K. S., Syrjala, K. L., Back, A. L., & Wolfe, J. (2013). Promoting
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