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Northland Community and Technical College

Occupational Therapy Assistant Program


Critically Appraised Topics Assignment
Focused Question:
How can Occupational Therapy assist parents of children with a terminal illness increase their
coping skills?
Clinical Scenario:
Parents who have a terminally ill child often suffer from psychological disturbance
during the course of the childs illness and after the child passes away (Black, 1998). Cancer is
the second leading cause of death for children ages 1-14 and 167 children per million is
diagnosed each year. (Litzelman, Catrine, Gangon, Witt, 2011). The parents suffer from higher
degrees of depression, higher stress, less family cohesion and expressiveness (Billings, Daniels,
Miller, Moos, 1987). There is a high degree of helplessness, feelings of inadequacy at parenting,
financial burdens, marriage trouble, avoidance of others, and fear of being unable to cope (Black,
1998). Roughly 47% of parents with a chronically ill child show significantly elevated levels of
psychiatric symptoms with the mean being associated with major depressive disorder. (Cohen,
1999).
Summary of Key Findings:
Level 3
Mothers experience of the support from a bereavement follow-up intervention after the
death of a child. Nikkola, Kaunonen, Aho, 2012.
The subjects of this study were 86 grieving mothers whose children had died at age 3 or
younger, and it was conducted at two Finnish University hospitals. The focus of this article was
to determine what type of bereavement intervention is the most helpful for grieving mothers after
the death of a child. They looked at various kinds of bereavement interventions which include:
professionally led and peer led support; those were conducted in either one-to one or in groups.
The majority of the mothers reported that support from medical professionals and peers was the
most helpful. The study also showed that at the end the mothers who reported a status of good
mental health had the most contact with medical professionals, and the mothers who reported the
status of poor mental health had the least amount of support from medical professionals.
Quality of life among parents of children with cancer or brain tumors: the impact of child
characteristics and parental psychosocial factors. Litzelman, Catrine, Gangnon, Witt, 2011.
The purpose of this study is to understand the impact that childhood cancer has on the
family. This study specifically examined the relationship; the childs clinical characteristics, and
the quality of life of the parents, and how the parents psychosocial factors affect the relationship.
The sample included 75 children with cancer or brain tumors and the parent that is their primary
caretaker. They were given an interview to establish a baseline, an in-person interview, and a

follow-up interview. The in-person interview included items about sociodemographic


characteristics, health behaviors, and a series of validated self-reported measures. The study
found that the childs clinical characteristics are related to poor quality of life for the parents,
interventions to reduce stress and other burdens may help improve the quality of life. They
suggest that patients will benefit from an awareness of the potential effect of treatment and
activity limitation. Clients should also be made aware of the potential impacts on health and
quality of life that is put on them while being a caregiver to child with cancer or brain tumors.
Screening parents for excessive burdens, stress, or mental health problems could be beneficial as
well. It would also be beneficial for the clients to be aware of how their health and well-being
impacts their role as a caregiver.
Level 5
Families Coping with Childhood Illness: A Research Review. Cohen, 1999
This is an article review that emphasizes research findings about the negative impact that
illness demands can have on a family and the positive impact that family resources can have on
illness management. Roughly 47% of parents with a chronically ill child show significantly
elevated levels of psychiatric symptoms with the mean being associated with major depressive
disorder. It was found that mothers have more involvement in treatment and interact more with
medical professionals. It was also found that mothers have higher levels of distress were
associated with ongoing health conditions of the child than the fathers. Fathers reported greater
stress in relation to finances and emotional attachment to the child. These findings suggest
gender differences in stress and coping patterns. It was also found that the age of the child can
have a different effect on the parents, for example illness during infancy was more stressful for
the mother and illness during school age and adolescence was more stressful for fathers (Hirose
& Ueda, 1990). Interview results found that parents often experience chronic grief for the
normal life that their child and family might have had, and many of the parents feel guilty
because they worry that they did something wrong or that they passed on a bad
gene. Many parents felt that they were left to fight the illness alone and that health care
providers were unable to support the family with information about home care, access to needed
services, or home management strategies.
Impact of childhood cancer on parents relationships: an integrative review. Silva, Jacob,
Nascimrelatdet
ento, 2010.
The purpose of this study was to examine the emotional tensions in the relationships of
parents of children who were diagnosed with cancer. The studies used in this paper were written
between 1997 and 2009. The inclusive criteria for the articles reviewed were: if the topic
addressed the parents relationships during childhood cancer, participants were mothers, fathers,
or both, they looked at both qualitative and quantitative studies, languages were English,
Portuguese, and Spanish, the date of publications were between 1997 and 2009, and if there was
an abstract available. There were fourteen articles that meet this criteria and they found four
themes including: the changes in the parents relationship during the trajectory of the childs
illness, difficult communication between parents, a difference in stress and coping based on
gender, and role changes.

Qualitative
Mothers evolving relationships with doctors and nurses during the chronic childhood
illness trajectory. Swallow & Jacoby, 2001
This study involved interviews with the mothers of 29 children. The focus of this article
is the relationships between the mother and the medical staff that is central to the treatment of the
child during the course of a chronic illness. This study found that mothers often develop a
relationship with the medical staff because they are generally the primary caregivers for the child
who is ill and the quality of that relationship is based on the way that medical staff communicate
with the parent. This study determined that the relationships with medical staff that were based
on mutual respect and good communication early on were a big part of the coping process for
mothers. The mothers had a greater trust in the medical professionals when the information
regarding their childs conditions was relayed to them promptly and in an honest and frank
manner. Some of their mothers reported feelings of shock when receiving information in this
manner but overall it helped the medical professional gain the trust of the parent. Being clear,
using diagrams and terms the mother could understand was also very important in establishing a
good relationship with the parent, thus making the parent feel more at ease with the care their
child was receiving.
Moments of realization: Life-limiting illness in childhood- perspectives of children, young
people and families. Menezes, 2010
The purpose of this study was to understand the perceptions and experiences of the child
with family insights. There were 39 participants from 10 families. Parents were asked to talk
about the moment they found out about the diagnosis and prognosis of their child. They said that
the diagnosis was little more than words with no real meaning, but those without a diagnosis
hoped for one so they would know what to do next, and they wanted to know the long-term
picture so they could know what they needed to do in the future to take care of their child. Most
of the parents wanted to know if the condition was inherited. The parents wanted more from the
medical professionals than just a diagnosis and to get literature thrown at them. Parents reported
feelings of pain, guilt, and helplessness while seeing the illness take its course in the child.
Parents were searching for the meaning of the childs life and how to help make the most of the
childs life.
Chronic grief: experiences of working parents of children with chronic illness. George,
Vickers, Wilkes, Barton, 2006.
The purpose of this study was to share the experiences of parents who are working full
time while caring for a child with a chronic illness. The data was obtained through in-depth semi
structured interviews and thematic analysis with twelve parents. There were eight female and
three male participants with ages ranging from 30-50 with the average being 42. There were two
themes revealed in the study which were grief and dealing with professionals. The parents
experience chronic grief in relation to their childs condition. The grief was found to recur at
various stages of the illness, and be the worst at the time of the initial diagnosis. It was found
that most of the parents felt like their opinions were not being heard or valued by the health
professionals at the time of diagnosis, which affected their confidence in the health care system
and the health care professionals themselves. It was also found that it can be especially

challenging for parents to manage the additional stressors of trying to balance the roles of
caretaker and full time employee.
Children with disability and complex health needs: the impact on family life. Whiting,
2013.
The purpose of this study was to determine the differences in the perceptions, need for
support, and the ability to make sense of the disability of the parents of children with a disability,
life-threatening, or life-limiting illness, or technologically dependent. A series of in-depth semistructured interviews were conducted, and there were 22 families with one or more child with
disabilities that took place in the study. The study had three main categories including: time,
multiple roles, and the disabled family. An issue for the family was the time required to provide
the additional care. The parents were also often required to take on multiple roles and found this
to create extra difficulties for the family. There were some families who described themselves as
a disabled family, which describes the effect that the childs disability had on the whole family
through social disengagement, loss of work opportunities, finical burden, and general disruption.
Bottom Line for Occupational Therapy Practice:
Occupational Therapy (OT) is uniquely qualified to help grieving parents get back to a functional
life and return to a status of good mental health. Occupational Therapy in mental health would
be especially good for this, especially if they had special training in bereavement. An OT can
help a family figure out what comes next for them and what steps they need to take to get there.
(Nikkola, Kaunonen, Aho, 2012)
According to Litzelman, Catrine, Gangnon, and Witt there is a need for intervention to
reduce the stress of having a child with cancer and this could be translated to other diagnoses as
well. Research also suggests that a systematic screening of parents mental and physical health
may facilitate interventions, this is something that an OT practitioner can do. The OT
practitioner will also then be able to come up with the proper interventions and then carry them
out with the parents. Helping parents to realize that their health and well-being will affect their
role as a care-giver and if the parents are taking care of themselves, they will be able to take care
of their child better, which may be a factor in motivating the parents to take their own health into
consideration. (Litzelman, K., Catrine, K., Gangnon, R., Witt, W.P. 2011)
Mothers and fathers have differences in stress and coping patterns so the coping strategies
need to be adapted to meet the individual needs of that person. If the OT practitioner is going to
be successful in helping the parent cope they will need to address the specific factors that are
influencing the client, and the OT will need to be aware that mothers and fathers have different
needs even though they have the same child. It would also be beneficial for OT practitioners to
provide education to parents about their childs condition. OT practitioners can help families
find services to fit their needs and educate the family on home management strategies. (Cohen,
1999)
The OT practitioners can assess the parents risk for: developing conflicts, having
communications issues, and a lack of cooperation that could interfere with their lives and
providing care for their child. The OT practitioner could help the parents with communication
by providing dialogue for them and showing them techniques for effectively expressing emotions

and how to establish partnerships, and promote support between the couple. (Silva, Jacob,
Nascimento, 2010)
It will be useful for the OT practitioner to form a relationship based on mutual trust and
communication with the parents early on in the treatment. It will be important to always
establish contact and communication with the parent frequently. Find out what the parent needs
from the OT practitioners and work with the parent to meet the needs of both the child and the
parent. It is likely that the OT practitioner will be working with the child directly rather than the
parent, but the OT can help the parent as well by giving them updates about the childs progress
immediately after the therapy session, even if it is just sitting down with them and going over all
the things that were worked on, and how their child did during the session that day even if the
child did not show significant progress form the last session, the parent will appreciate knowing
every bit of information. Also, not sugar coating the information, and talk to the parent in a way
that is understandable as well as being available to answer any questions to ease any stress the
parent has can help the parent as much as the child. (Swallow & Jacoby, 2001)
OT practitioners can help parents by helping their kids make their time meaningful. OT
practitioners could also help parents by being able to spend time discussing the childs diagnosis
and what it means and how it will change their lives and try to come up with game plan for
treatment with the family. (Menezes, 2010). The first step is to recognize that the parents are
dealing with chronic grief and that dealing with healthcare professionals can make that grief
worse. OTs can offer mental health services that allow the parent to share their feelings, and
then the OT can work together with other professionals on the team to determine what is best for
the whole family. It will also be important to figure out what specifically triggers the parents
grief and how they can either avoid the triggers or find better ways of coping when faced with
these triggers. (George, Vickers, Wilkes, Barton, 2006.)
As pointed out by Whiting (2013) it is important, as a medical professional, to always be
respectful of the time of the family, it may be beneficial for OT professionals to offer home
services to families to make it even easier on them to get the help they need. It may also be
helpful to the family for the OT practitioner to help them come up with schedules and work on
time management techniques so they are able to fulfill the roles that they need to fill. It can also
be helpful for the OT practitioner to consider therapy for the whole family as a unit rather than
just focusing on individuals. (Whiting, 2013).
Overall OT practitioners typically work with the child, but what they should also be
focusing on is the mental health of the childs parents. It needs to be noted that mothers and
fathers have different needs when it comes to coping techniques. OT practitioners can also help
by having good communication with the parents and make sure that they are the first to know
about any developments with their child, make time for the parents and take their concerns
seriously. The parents could enter OT treatment as well and receive coping methods and
treatments from the OT in a mental health setting to address anxiety and stress issues. OTs
could do perform screenings to assess the mental health status of the parent to determine the
specific needs of the parent. The take home message for OT practitioners is to not ignore the

mental health of the parents of children with terminal illness because they could be at risk for
serious mental health problems.

Review Process:
Inclusion Criteria: parents and families children with terminal, life limiting, and/ or
chronic illnesses. Parents coping with the loss of a child
Exclusion Criteria: siblings, families of healthy children
Search Strategy:
Categories
Patient/Client Population
Intervention
Comparison
Outcome

Key Search Terms


Children, families, parents, life-limiting illness,
cancer, terminal illness, chronic illness
Occupational Therapy
Nursing, PT, medical professions
Coping, stress, anxiety

Databases and Sites Searched:


Databases: Ebscohost
Sites: American Childhood Cancer Organization website

Quality Control/Peer Review Process:


This topic was formed by filling out a PICO sheet. The research is used to support the question
of how an Occupational Therapist can help parents of terminally ill children increase their coping
skills. Once the question was established, research was conducted on the NCTC Library data
base EBSCO Host and one website. All of the articles used were peer reviewed. There are a total
of 10 articles. This document was peer reviewed by other OTA students and an OTA instructor.

Results of Search:
Summary of Study Designs of Articles Selected for Appraisal:
Level of Evidence Study Design/Methodology of Selected
Number of Articles Selected
Articles
Level I
Systematic reviews, meta-analysis,
randomized controlled trials
Level II
Two groups, nonrandomized studies (e.g.,
cohort, case-control)

Level III
Level IV
Level V

One group, nonrandomized (e.g., before


and after, pretest, and posttest)
Descriptive studies that include analysis
of outcomes (single subject design, case
series)
Case reports and expert opinion, which
include narrative literature reviews and
consensus statements

Qualitative

2
4

Limitations of the Studies Appraised:


Quantitative Level 3
Mothers experience of the support from a bereavement follow-up intervention after the
death of a child. Nikkola, I., Kaunonen, M., Aho, A. L. 2012.
This study was done with such a small sample size and small demographic. The cause of
death for the children was not necessarily a terminal illness. The ages of the children was so
limited, ages 3 and younger. There was no randomization, although with this type of research
topic it may not be moral to perform a random study.
Quality of life among parents of children with cancer or brain tumors: the impact of child
characteristics and parental psychosocial factors. Litzelman, K., Catrine, K., Gangnon, R.,
Witt, W.P. 2011.
This study does not talk about OT and it is focused only on children with cancer. It also
does not have any suggestions for possible interventions. This study had a small sample size of
only 75 cases, all from the mid-west area of the United States.

Quantitative Level 5
Families Coping with Childhood Illness: A Research Review. Cohen, M.S. PH.D. 1999
This is an article review, and no actual studies completed in this article. This article is
also more than 10 years old and may contain some outdated material.
Impact of childhood cancer on parents relationships: an integrative review. Silva, F.M.,
Jacob, E., Nascimento, L.C. 2010.
OT is not mentioned as a medical intervention for these parents. It also does not talk
about any actual coping or stress interventions that would be beneficial for parents. This is a
review and does not contain any new experiments or use any participants. The articles were
limited to what could be obtained from 6 data bases.

Qualitative
Mothers evolving relationships with doctors and nurses during the chronic childhood
illness trajectory. Swallow, V.M. & Jacoby, A. 2001
This study completely leaves out the coping process of the father. This study is more than 10
years old and may contain outdated material. There is a small sample (29) of interviews and
from the same area therefor it is not accurate to apply these findings to all mothers of a child
with a chronic illness.
Moments of realization: life-limiting illness in childhood- perspectives of children, young
people and families. Menezes, A. 2010
The main focus of the study is on the whole family and how they cope with the tragedy of
having a child with a terminal illness. The sample size is very small (39) and the participants are
all from the same area and therefor it is not accurate to apply this to all families with a child that
has a life-limiting illness.
Chronic grief: experiences of working parents of children with chronic illness. George, A.,
Vickers, M.H., Wilkes, L., Barton, B. 2006.
This study uses a small sample size (12) that may not be representative of a larger
population. This study also did not talk about OT or how it could be used to help parents during
the grieving process.
Children with disability and complex health needs: the impact on family life. Whiting, M.
2013.
This study includes siblings as well as the parents rather than just parents, and it includes
children who have technological dependence, which is not included in the question.
Articles Selected for Appraisal:
Nikkola, I., Kaunonen, M., Aho, A.L. (2012). Mothers experience of the support from a
bereavement follow-up intervention after the death of a child. Journal of Clinical
Nursing. Vol:22 1151-1162.
Cohen, M.S. (1999). Families coping with childhood chronic illnesses: a research review.
Families, Systems & Health. Vol:17(2). 149-164.
Swallow, V.M, & Jacoby A. (2001). Mothers evolving relationships with doctors and nurse
during the chronic childhood illness trajectory. Journal of Advanced Nursing. Vol:36(6).
755-764.

Menezes, A. (2010). Moments of realization: life limiting illness in childhood- perspectives of


children, young people and family. International Journal of Palliative Nursing. Vol:16(1)
41-49.
Silva, F.M., Jacob, E., Nascimento, L.C. (2010). Impact of childhood cancer on parents
relationships: an integrative review. Journal of Nursing Scholarship. Vol: 42(3). 250-261.
Litzelman, K., Catrine, K., Gangnon, R., Witt, W.P. (2011). Quality of life among parents of
children with cancer or brain tumors: the impact of child characteristics and parental
psychosocial factors. Qual Life Res. Vol: 20. 1261-1269.
George, A., Vickers, M.H., Wilkes, L., Barton, B. (2006). Chronic grief: experiences of working
parents of children with chronic illness. Contemporary Nurse. Vol: 23. 228-242.
Whiting, M. (2013).Children with disability and complex health needs: the impact on family life.
Nursing Children and Young People. Vol:26 (3). 26-30.
Other Resources Utilized:
Black, D. (1998). The dying child. BMJ: British Medical Journal. Vol: 316(7141), 13761378.
Daniels, D., Miller, JJ., Billings, A.G., Moos, R.H. (1989). Psychosocial risk and resistance
factors among children with chronic illness, healthy siblings, and healthy controls.
JAbnormal Child Psychology. Vol. 15, 295308.
American Childhood Cancer Society. (2015). Retrieved from:
http://www.acco.org/about-childhood-cancer/diagnosis/childhood-cancerstatistics/

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