Journal of Pediatric Oncology

Nursing http://jpo.sagepub.com/

Education Given to Parents of Children Newly Diagnosed With Acute Lymphoblastic Leukemia: A
Narrative Review
Gemma Aburn and Merryn Gott
Journal of Pediatric Oncology Nursing 2011 28: 300
DOI: 10.1177/1043454211409585

The online version of this article can be found at:

http://jpo.sagepub.com/content/28/5/300

Published by:

http://www.sagepublications.com

On behalf of:

Association of Pediatric Hematology/Oncology Nurses (APHON)

Additional services and information for Journal of Pediatric Oncology Nursing can be found at:

Email Alerts: http://jpo.sagepub.com/cgi/alerts

Subscriptions: http://jpo.sagepub.com/subscriptions

Reprints: http://www.sagepub.com/journalsReprints.nav

Permissions: http://www.sagepub.com/journalsPermissions.nav

>> Version of Record - Sep 26, 2011

What is This?

Downloaded from jpo.sagepub.com at TEXAS SOUTHERN UNIVERSITY on December 3, 2014

409585
and GottJournal of Pediatric Oncology Nursing
JPO28510.1177/1043454211409585Aburn

Journal of Pediatric Oncology Nursing

Education Given to Parents of

28(5) 300­–305
© 2011 by Association of Pediatric
Hematology/Oncology Nurses

Children Newly Diagnosed With Reprints and permission:

sagepub.com/journalsPermissions.nav
DOI: 10.1177/1043454211409585
Acute Lymphoblastic Leukemia: http://jopon.sagepub.com

A Narrative Review

Gemma Aburn, BNurs, RN1 and Merryn Gott, MA, PhD2

Abstract
Over the past 30 years, diagnosis and treatment of childhood cancers has developed significantly due to medical
research and advancements in technology. As a result, prognosis has improved, and approximately 80% of children
diagnosed with cancer survive into adulthood. Care has also shifted from a sole inpatient setting to include outpatient
treatment where possible, and both these trends have resulted in a shift in the focus of research to the psychosocial
and psychological effects of treatment on children and their families. Increasingly, parents are taking on the role of
providing “nursing” care for their children, for example, managing medications and emergency situations as well as
everyday treatment needs. This article critically reviews the current literature surrounding the approaches and methods
used by nursing staff to educate families to perform this care within the context of a planned first discharge from
hospital. Twenty-two relevant articles were identified covering different aspects of education and discharge planning,
including the following: facilitation of education and discharge planning, collaboration between professional disciplines
and family, responsibilities and contractual agreements, timing and approach, care planning, and the information needs
of families. Only 4 articles discussed what the family felt they needed to know and be prepared for prior to discharge.
This review indicates that further research is required to establish the needs of parents and caregivers with regard to
education prior to their child’s first discharge from hospital in the pediatric hematology and oncology setting.

Keywords
parent care, education, leukemia, cancer, oncology and hematology, children

Introduction of treatment or disease process (Leukemia & Blood

Medical advancements and technology over time mean
children diagnosed with cancer no longer face certain death.
As recent as the 1940s, children with cancer were merely
admitted to hospital for clarification of diagnosis and
given palliative treatment. Today, a curative approach is
used encompassing a variety of treatment protocols, and
approximately 80% of children now survive the diagno-
sis and treatment of cancer (Smith & Hare, 2004). With
so many children receiving treatment, and given the
nature of the treatment protocols now used, the focus of
care has begun to move away from a sole inpatient set-
ting. Thus, it is necessary to investigate how parents are
educated and supported to provide nursing care for their
child. It is necessary that parents and caregivers receive
adequate information and advice prior to discharge for
recognizing and acting on simple signs such as a fever,
which can mean life or death for a child with acute
lymphoblastic leukemia due to neutropenia as a result
Foundation, 2009). This review examines the literature
regarding approaches to parent education and discharge
planning for children both newly diagnosed with cancer
and with complex needs within hematology/oncology.
Because of the lack of literature within the area of hema-
tology and oncology specifically, the review was also
extended to include research undertaken within other
pediatric services. This article aims to explore the current
processes used in the education of parents with children
newly diagnosed with cancer and parental views and
experiences related to these processes.
1
Auckland District Health Board, Auckland, New Zealand
2
University of Auckland, Auckland, New Zealand
Corresponding Author:
Gemma Aburn, Ward 27A/B, Children’s Hematology & Oncology,
Starship Children’s Hospital, Auckland District Health Board, Auckland,
New Zealand
Email: gaburn@adhb.govt.nz

Downloaded from jpo.sagepub.com at TEXAS SOUTHERN UNIVERSITY on December 3, 2014

Aburn and Gott 301
Method
Design
A narrative review of the existing literature surrounding
the current processes used in educating parents of newly
diagnosed children with cancer, including parental views
and experiences related to these processes, was under-
taken. A narrative review is similar to a systematic review;
however, a narrative review looks at a broad range of
issues related to a given topic (Cook, Mulrow, & Haynes,
1997). A systematic review focuses on a well-defined
question and addresses this in depth (Cronin, Ryan, &
Coughlan, 2008). A narrative review is appropriate in this
situation as there has been limited research undertaken
within this arena.
Procedure
The search undertaken to review the literature was com-
pleted through international databases, namely, CINAHL,
Cochrane, and Medline. A number of key journals were
searched by hand, including editions of the Journal of
Pediatric Oncology Nursing produced between 1997 and
2009. Articles were included in the review if they dis-
cussed education process, approach, and/or parental or
family perspectives of the education provided. The inten-
tion was to gather literature published after 1990 so
research reflected current practice. Keywords used dur-
ing searches included the following: (Education OR
Discharge Planning OR Transition) AND (Children
OR Child OR Pediatric) AND (Complex OR Oncology
OR Leukemia OR Neoplasm OR Cancer).
Results
Twenty-one articles were identified in this review.
A range of both adult (n = 5) and pediatric hematology
and oncology studies (n = 11) were identified, as well as
a number of studies completed within other specialties of
complex medical pediatric care (n = 6).
Four articles discussed the families’ information needs;
however, 2 of these articles investigated an adult setting,
which could alter findings significantly given the differ-
ent family dynamic presented in a pediatric setting.
The articles were mostly published between 1991 and
2010; however, 2 articles were included even though they
were published prior to these dates due to the significant
points raised.
The articles reviewed included a number of studies
completed using qualitative methodology (7). Two stud-
ies used mixed methodology and included both qualita-
tive and quantitative data. One study used quantitative
methodology. A large number of critical reviews were
identified (12) and were included due to the limited amount
Downloaded from jpo.sagepub.com at TEXAS SOUTHERN UNIVERSITY on December 3, 2014
of empirical research that has taken place within the area
of managing education processes within this specific
population group. However, none of these reviews identi-
fied parent perceptions or views around education in a
pediatric setting. This review, using a narrative approach,
investigates the literature surrounding current practice in
pediatric hematology and oncology and the perceptions
and views of both patients and parents in a variety of set-
tings from complex pediatric care to adult hematology
and oncology settings.
Six key themes were identified from the literature:
facilitation of education and discharge planning, collabo-
ration between professional disciplines and family, respon-
sibilities and contractual agreements, timing and approach,
care planning, and information needs of the families.
Each theme will be discussed in turn below.
Facilitation of Education
and Discharge Planning
A feature identified as being crucial to the success of
discharge planning was the employment of a key worker
or primary nurse. Research by Wolfe (1993) has sug-
gested that this role is most effective when undertaken by
specially trained nurses who focus purely on discharge
planning by managing a caseload of patients. This method
of case management may be advantageous due to the
knowledge the nurse specialist accumulates and the
rapport developed between agencies (Gatford, 2004).
Stephens (2005), Lewis and Noyes (2006), Bloomquist
and Lewis-Hunstiger (1978), and Collinson (2008) iden-
tified that ward nurses involved in caring for the patient
on a daily basis are ideal candidates to facilitate the dis-
charge process. It is therefore evident that 2 schools of
thought exist around the best possible way to facilitate
the discharge process using a primary nurse. However, it
can be concluded that a key worker is considered neces-
sary for the process to be completed in a timely manner,
as we know poorly coordinated planning can prolong the
discharge process (Stephens, 2005).
Partnership Between Professional
Disciplines and Family
Close collaboration between the members of a multidisci-
plinary team (MDT) is necessary to ensure safe and effec-
tive care. The MDT is one form of partnership that occurs
in a discharge planning setting (Lewis & Noyes, 2006;
McConnell, Pasut, & Kotas, 1997). Stephens (2005)
describes the importance of all members of the MDT
working toward a common goal with clearly defined roles
and responsibilities. This system means that all areas of
expertise can be drawn on to plan an efficient and secure
discharge for the patient and their family. It is important
302 Journal of Pediatric Oncology Nursing 28(5)
to note that in a multiprofessional team, there are likely to
be a variety of agencies from hospital and community
settings involved in the child’s care (Gatford, 2004; Lewis
& Noyes, 2006). Effective communication between dif-
ferent teams is essential, and a number of families have
stated that when services are run in isolation from each
other, they feel as though their care exists in “two worlds”
(Wolfe, 1993). Similarly, effective communication is also
required between professionals and the family; having a
group of professionals making all the decisions and plan-
ning care in isolation from the family is unlikely to be
beneficial for the child. Indeed, the education and dis-
charge planning process is much more likely to be effec-
tive if a collaborative relationship is established between
the professionals and the family (Wong, 1991). This
approach is more likely to result in the provision of care
being individualized and maintaining a family focus
(Ahmann, 2004). The final message conveyed by Lewis
and Noyes (2006) and Bloomquist and Lewis-Hunstiger
(1978) is that when planning care and discharge in part-
nership with the family, it is essential that accurate docu-
mentation and open communication occur.
Responsibilities and
Contractual Agreements
A child is discharged from hospital following a prolonged
period of planning. When care is handed over to the fam-
ily, albeit with support from other agencies, questions
around responsibility for each integral part of care can be
raised. Effective communication throughout this time can
lead to clarification of responsibilities and identification
of concerns the family may have (Lewis & Noyes, 2006).
Collinson (2008) outlines a clear plan for routine care and
emergency situations. This plan details the agencies, pro-
fessionals, and family members who would be involved at
each stage as arranged with the family. Such planning and
communication around responsibility can enable the fam-
ily to be prepared and act appropriately at all times (Jacob,
1999; McConnell et al., 1997). Wolfe (1993) argues that
the onus of coordination and negotiation of care should be
placed entirely on the parent or the caregiver. The ratio-
nale for this approach is to empower the family by dele-
gating responsibility; however, some question the
appropriateness of placing all responsibility on the family
at what is potentially a time of high stress (Kelly &
Porock, 2005). Another approach is the use of a written
contract or formal agreement between health profession-
als and the family (Wong, 1991). This could be a valuable
tool in providing opportunities for clearly defining respon-
sibilities. An individualized written agreement may be of
more benefit to a previously noncompliant family who
wish to undertake home care as this sets an agreed level
of responsibility that both parties (professionals and
Downloaded from jpo.sagepub.com at TEXAS SOUTHERN UNIVERSITY on December 3, 2014
family) feel is achievable (Wong, 1991). Ewing et al.
(2009) piloted a Web-based resource for families to use at
their own pace. This aimed to provide families with total
responsibility and ownership of the education about their
child’s diagnosis and care plan. Expert or staff assistance
via email was offered if families had any questions about
the study, and this approach could be extended to encom-
pass treatment and diagnostic concerns. However, in the
initial pilot study, there was poor uptake of the program.
It would be interesting to explore if further promotion and
hands-on assistance would increase uptake and then exam-
ine the extent to which this method of education provides
a forum for meeting the needs of families (Ewing et al.,
2009).
Timing and Approach
At a time when a child is diagnosed with a life-threatening
illness such as cancer, a family can be turned into com-
plete disarray, as they have to cope with the foreign
environment of hospital and the shock of the unexpected
(Jacob, 1999). Many authors including Jacob (1999)
believe that education and discharge planning should
begin on admission. In theory, this is undoubtedly the
most effective way to begin teaching families (Collinson,
2008). In reality, when children are diagnosed with a
malignancy and face months of treatment, there is an
initial stage of grief and adaptation, which must be rec-
ognized (Chesler & Barbarin, 1984; Lewis & Noyes,
2006). Although it is not the most practical time to pro-
vide education, it is necessary to give information sur-
rounding the basics of diagnosis and the child’s disease
and potential treatment options. This is due to the fact
that treatment is to be initiated relatively quickly to opti-
mize positive outcomes (James & Johnson, 1997). Perhaps
the approach described by Wong (1991) of beginning
informally and further developing into formal education
may represent the best compromise between efficacy
and reality.
There are many barriers to providing information that
can be present at diagnosis. The overwhelming and time-
consuming nature of a new diagnosis, the need for com-
munication with family and friends, and the priority of
comforting the child as he or she adjusts to a new envi-
ronment can all affect parent education (Ewing et al.,
2009). Some authors suggest that education should be a
continuous process, which occurs with every interaction
with the family (Gatford, 2004; Stephens, 2005). In the
early stages, the family may only be able to cope with
questions being answered rather than gathering rafts of
new information (McConnell et al., 1997). Therefore, at
this stage it can be said that education is often initiated
by the family (James & Johnson, 1997). Nevertheless,
education further into the admission and initiation of
Aburn and Gott 303
treatment may be nurse led, encompassing information
the family requires to survive emotionally and physically
(James & Johnson, 1997). It is essential that, throughout
diagnosis and treatment, nursing staff can assess the
ability of the family to cope with the information given
(Ahmann, 2004).
Care Planning
It is evident that planning discharge and home care for
children with complex needs is successful when a com-
prehensive care plan is developed early on in the patient’s
initial admission (Wolfe, 1993; Wong, 1991). To be
effective, care planning should be multifaceted and
encompass a “whole systems” approach, which is agreed
on by health professionals and the child’s family (Lewis
& Noyes, 2006). Ahmann (2004) identifies 4 goals of
discharge to be incorporated into care planning: making
informed decisions, basic self-care skills to survive out
of hospital, ability to recognize problems, and knowing
where to get questions answered should they arise.
Necessary maintenance cares for the child such as central
line care, managing chemotherapy side effects, febrile
neutropenia, and medicine administration can be integrated
into the goals, creating an individualized and child-
focused care plan that will aid transition from hospital to
home (Jacob, 1999).
Information Needs of Families
A number of studies examining the information needs
of patients and their families from a health professional
perspective were identified. However, there is limited
literature that identifies what patients and their families
want or feel they need to know. As a profession it has
been identified that nurses assume parents of child cancer
patients want to act as consumers and once fully informed
want to be the ultimate decision maker for their child
(Kelly & Porock, 2005; Pyke-Grimm, Degner, Small, &
Mueller, 1999). However, from a parent’s perspective,
there is no empirical evidence to support this assumption
(Pyke-Grimm et al., 1999). Nurse’s perceptions of what
families should and want to be educated about include
information on treatment, symptom management, and
psychomotor skills (Kelly & Porock, 2005). Commonly,
pediatric oncology nurses do not endorse teaching about
coping, end-of-life issues, and cancer treatments other
than chemotherapy (Kelly & Porock, 2005). It would be
interesting to identify whether families feel that emo-
tional support and coping strategies should be a part of
education provided by nurses or whether this is already
covered enough by other members of the multidisci-
plinary team. A study in an adult population revealed a
list of subcategories patients reflected as vital to be
Downloaded from jpo.sagepub.com at TEXAS SOUTHERN UNIVERSITY on December 3, 2014
included in future education programs. The 5 main cate-
gories were treatment-related information, diagnosis and
prognosis, self-care and coping information, home care,
and the impact of cancer on relationships and families
(Adams, Boulton, & Watson, 2009). Given the differing
family dynamics in adult and pediatric populations, needs
of parents and families of children with cancer may differ
significantly. A pediatric study by Yilmaz and Ozsoy (2010)
identified that families of pediatric patients believed they
needed guidance on a range of issues including the illness
process, diagnosis, treatment, home care, side effects of
treatments to be aware of, managing potential infections,
and nutrition.
Effects of Education on Medical Outcomes
Yilmaz and Ozsoy (2010) completed a quasi-experimental
study that compared 2 groups of pediatric oncology patients
and their families: one group that did receive education
and the other that did not. They concluded that families
who received education and discharge planning had
overall less mucositis, less central venous catheter related
problems, and less acute admissions to hospital. The
ethical complexities and issues surrounding a random-
ized control trial mean that the completed investigation
of the impact of education on treatment-related toxicities,
hospital acute admission, and greater medical outcomes
are somewhat limited. However, from this study it can be
reflected that patient and family education does appear to
have a positive effect on a patient’s treatment outcomes
(Yilmaz & Ozsoy, 2010).
Limitations of Current Literature and
Further Research Directions
The articles identified in this literature review predomi-
nantly reflected on current practices used to plan dis-
charge and provide education for families of children with
complex needs or newly diagnosed with cancer. It is inter-
esting to note that throughout the literature common themes
of facilitation, collaboration, discussion of responsibili-
ties, having an awareness of the timing and approach of
educating families, and care planning are raised. Another
limitation of note is that some of the research reviewed
here was carried out within an adult setting (Adams et al.,
2009; Degner et al., 1997; Wolfe, 1993).
Discussion
This review indicates the lack of research around the best
practice of parent education and discharge planning, spe-
cifically within the pediatric hematology and oncology
setting. There are no specific studies in the literature that
investigate parental perceptions and their needs in relation
304 Journal of Pediatric Oncology Nursing 28(5)
to the education and discharge planning process. To pro-
vide effective education that meets best practice stan-
dards and addresses the needs of the specific population,
it appears only appropriate to study the families of chil-
dren within this area to assess whether current practice is
meeting their needs.
To better prepare families in the future, it appears that
a number of studies have suggested that discussion should
occur with the patient and family as to their needs and prior
knowledge (Degner et al., 1997; Hack, 1991; Pyke-Grimm
et al., 1999; Wells et al., 1990).
When working as a health professional within the
oncology/hematology setting, it is necessary to recognize
that people’s information needs are often related to edu-
cational level of the family, age of person affected by
cancer, time since diagnosis and the staging of the disease,
and necessary treatment (Hack, 1991). As discussed, tim-
ing and approach is imperative and certain information
has more significance at different phases throughout
the family’s journey through the cancer process (Wells
et al., 1990).
Limitations and Bias
Resource limitations and researcher bias are potential
concerns of this unfunded literature review. For example,
articles in other languages (non-English) could not be
included due to the lack of access to appropriate transla-
tion services; however, only 2 articles were discovered
that did not have an English translation available.
Conclusion
Through the analysis of the literature written predomi-
nantly in the last 20 years, it is apparent that there are
many different opinions and viewpoints as to the best
ways in which health professionals facilitate the dis-
charge process with pediatric patients. Prominent themes
of having a facilitator or coordinator such as a key worker
or primary nurse, assessing the timing of the education
given to parents, and the way in which professionals
integrate with family to create the best possible outcomes
are all integral features of discharge planning that must
be considered. It is also important to recognize the value
patients and their family’s viewpoints have on develop-
ment of any education process provided by health profes-
sionals. The research studies investigated within this
review have used a variety of methodologies to gather
and analyze data. Methodologies were dependent on
the population and the specific area of practice being
studied.
It is evident that there has been a lack of research inter-
nationally into the best practice of managing the family
education process within discharge planning for children
Downloaded from jpo.sagepub.com at TEXAS SOUTHERN UNIVERSITY on December 3, 2014
newly diagnosed with a hematological or oncological dis-
ease, and more specifically acute lymphoblastic leukemia,
which is becoming more frequently managed in an outpa-
tient setting.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with
respect to the research, authorship, and/or publication of this
article.
Funding
The author(s) received no financial support for the research,
authorship, and/or publication of this article.
References
Adams, E., Boulton, M., & Watson, E. (2009). The information
needs of partners and family members of cancer patients: A
systematic literature review. Patient Education and Coun-
seling, 77, 179-186.
Ahmann, E. (2004). How to prepare families for discharge in
the limited time available. Pediatric Nursing, 30, 212-227.
Bloomquist, L. M., & Lewis-Hunstiger, M. J. (1978). To care
for the child at home: Discharge planning for the child with
leukemia. Cancer Nursing, 8, 303-308.
Chesler, M. A., & Barbarin, D. A. (1984). Difficulties of provid-
ing help in a crisis: Relationships between parents & chil-
dren with cancer & their friends. Journal of Social Issues,
40, 113-134.
Collinson, J. (2008). Discharge planning of children with com-
plex needs after long-term hospitalization. Auckland, New
Zealand: Author.
Cook, D. J., Mulrow, C. D., & Haynes, R. B. (1997). Systematic
reviews: Synthesis of best evidence for clinical decisions.
Annals of Internal Medicine, 126, 376-380.
Cronin, P., Ryan, F., & Coughlan, M. (2008). Undertaking a
literature review: A step-by-step approach. British Journal
of Nursing, 17, 38-43.
Degner, L. F., Kristjanson, L. J., Bowman, D., Sloan, J. A.,
Carriese, K. C., O’Neil, J., . . . Mueller, B. (1997). Information
needs and decisional preferences in woman with breast cancer.
Journal of the American Medical Association, 227, 1485-1492.
Ewing, L. J., Long, K., Rotondi, A., Howe, C., Bill, L., &
Marsland, A. (2009). Brief report: A pilot study of a web
based resource for families of children with cancer. Journal
of Pediatric Psychology, 34, 523-529.
Gatford, A. (2004). Time to go home: Putting together a package
of care. Child: Care, Health and Development, 30, 243-246.
Hack, T. F. L. (1991). Relationships between preferences for
control over treatment decision-making and preferences
for information among breast cancer patient (Unpublished
Master’s thesis), University of Manitoba, Canada.
Jacob, E. (1999). Making the Transition from Hospital to Home:
Caring for the Newly Diagnosed Child with Cancer. Home
Care Provider, 4(2), 67-73.
Aburn and Gott 305
James, L., & Johnson, B. (1997). The needs of parents of pediat-
ric oncology patients during the palliative care phase. Jour-
nal of Pediatric Oncology Nursing, 14, 83-95.
Kelly, K. P., & Porock, D. (2005). A survey of pediatric oncol-
ogy nurses’ perceptions of parent educational needs. Jour-
nal of Pediatric Oncology Nursing, 22, 58-66.
Leukemia & Blood Foundation. (2009). Acute lymphoblastic
leukemia: A guide for patients and families. Auckland, New
Zealand: Author.
Lewis, M., & Noyes, J. (2006). Discharge management for chil-
dren with complex needs. Pediatric Nursing, 19(4), 26-30.
McConnell, C., Pasut, B., & Kotas, M. (1997). The pediatric bone
marrow transplant patient: Transition from hospital to home
care. Journal of Pediatric Oncology Nursing, 14, 131-133.
Pyke-Grimm, K. A., Degner, L., Small, A., & Mueller, B.
(1999). Preferences for participation in treatment decision-
making and information needs of parents of children with
cancer: A pilot study. Journal of Pediatric Oncology Nurs-
ing, 16, 13-24.
Smith, M., & Hare, M. L. (2004). An overview of progress in
childhood cancer survival. Journal of Pediatric Oncology
Nursing, 21, 160-164.
Stephens, N. (2005). Complex care packages: Supporting seam-
less discharge for child and family. Pediatric Nursing, 17(7),
30-32.
Wells, L. M., Heiney, S. P., Swygert, F., Troficanto, G., Stokes, C.,
& Ettinger, R. S. (1990). Psychosocial stressors, coping
Downloaded from jpo.sagepub.com at TEXAS SOUTHERN UNIVERSITY on December 3, 2014
resources and informational needs of parents of adolescent
cancer patients. Journal of Pediatric Oncology Nursing, 7,
145-148.
Wolfe, L. C. (1993). A model system: Integration of services for
cancer treatment. Cancer, 72(Suppl.), 3525-3530.
Wong, D. L. (1991). Transition from hospital to home for
children with complex medical care. Journal of Pediatric
Oncology Nursing, 8, 3-9.
Yilmaz, M. C., & Ozsoy, S. A. (2010). Effectiveness of a dis-
charge planning program and home visits for meeting
the physical needs of children with cancer. Support Care
Cancer, 18, 243-253.
Bios
Gemma Aburn is a registered nurse in the Children’s
Haematology & Oncology service at Starship Children’s
Hospital. Recently she has taken on a new role working part
time for the School of Nursing, University of Auckland as a
Professional Teaching Fellow, teaching undergraduate nursing
students.
Merryn Gott is a professor of health sciences at the School of
Nursing, University of Auckland. Her latest book, co-edited
with Christine Ingleton, Living with ageing and Dying:
Palliative and End of Life Care for Older People has just been
published. She is also an Associate Editor for BMJ Supportive
& Palliative Care.