RSCH 8110 Walden Education Given to Parents of Children Newly Diagnosed with Acute Lymphoblastic Leukemia Analysis Qualitative research can also be emerging in nature—there are many tools and techniques available to shape this approach to research, some dependent on circumstances, but like a sculpture, the varied tools and techniques needed to reveal the best approach for realizing the finished product require thoughtful consideration.
Post a critique of the research study in which you:
Evaluate the research questions and hypotheses.
Identify the type of qualitative research approach used and explain how the researchers implemented the design.
Analyze alignment among the theoretical or conceptual framework, problem, purpose, research questions, and design. Education Given to Parents of Children
Newly Diagnosed with Acute
Lymphoblastic Leukemia:
The Parent’s Perspective
Gemma Aburn and Meryn Gott
M
edical advancements and
technology over time
mean children diagnosed
with cancer no longer
face certain death. As recently as the
1940s, children with cancer were
merely admitted to the hospital for
clarification of diagnosis and given
palliative treatment (Jacob, 1999).
Today, a curative approach is used
encompassing a variety of treatment
protocols, and approximately 80% of
children now survive the diagnosis
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 purely inpatient
setting. Thus, it is necessary to investigate how parents are educated and
supported to provide nursing care for
their child at home. Parents and caregivers need adequate information and
advice prior to discharge as recognizing and acting upon simple signs,
such as a fever, can mean life or death
for a child with acute lymphoblastic
leukemia (ALL) (Leukemia & Blood
Cancer, 2009).
The overwhelming nature of diagnosis of a childhood cancer is well reported within the literature. Understandably, it can be a period of extreme stress for parents (Dahlquist et
al., 1993; Masera et al., 1997; Patistea,
Makrodimitri, & Panteli, 2000). A
diagnosis of childhood cancer can
often raise thoughts of uncertainty,
Gemma Aburn, BN (Hons.), RN, is Professional Teaching Fellow; and a Staff Nurse,
Starship Children’s Hospital, School of Nursing, University of Auckland, Auckland, New
Zealand.
Merryn Gott, PhD, MA, is a Professor of
Health Sciences – Nursing, University of
Auckland, Auckland, New Zealand.
Over the last 30 years, diagnosis and treatment of childhood cancers have
improved significantly due to medical research and advancements in technology.
Increasingly, parents are taking on the role of providing “nursing” care for their
children, including managing emergency situations as well as everyday treatment needs. This study investigated the perceptions and experiences of parents
caring for newly diagnosed children with acute lymphoblastic leukemia (ALL) in
relation to education given prior to the first discharge from hospital. Using a
grounded theory approach, 12 parents of children with ALL from a tertiary pediatric hematology and oncology setting in New Zealand were interviewed using a
semi-structured interview technique. Key findings of relevance to clinical practice
include the importance of recognizing the emotional strain parents experience
following diagnosis and the resultant impact upon how education is understood.
Findings may also be applicable to other complex child health areas where education is provided, both in a local and international context. Understanding the
family perspective is crucial to enabling clinicians to provide appropriate and
informative education to children with ALL and their families.
potential loss of life, and loss of hope
for the future of families (Patistea et
al., 2000). These factors can change
the focus of family life to providing
emotional support and care to the
sick child, which interrupts the normal routine. This disruption can have
a detrimental effect upon relationships within the family, between mother and father, parents and children, and
sibling-to-sibling (Dahlquist et al.,
1993; Jacob, 1999; Mikkelson, 1993).
The family needs information
promptly before treatment is initiated
(Smith & Hare, 2004). However, information must be delivered within the
context of the range of emotions parents experience at this time. It is
important that health professionals
recognize the initial stage of grief and
adaptation a family will be experiencing, as well as the difficulties they are
likely to encounter in managing a
daunting situation in a foreign environment, such as a hospital (Lewis &
Noyes, 2006). Such factors have an
impact upon the family’s ability to
take on board new information regarding treatment both at the time of
diagnosis and further into the illness
PEDIATRIC NURSING/September-October 2014/Vol. 40/No. 5
experience. In addition, most children want to be fully informed about
their diagnosis, treatment, and prognosis, and want to be involved in
decision-making, especially big decisions, such as palliative care (Ellis &
Levanthal, 2007).
When a child is diagnosed with a
life-threatening illness, the entire family structure is altered, including the
bond between siblings. Siblings can
assume a variety of roles with each
other, from mentor and supporter to
comforter, protector, and socializer
(Mikkelson, 1993). At the time of diagnosis, other family members may care
for siblings, and the focus of family life
can shift to caring and supporting the
sick child. Providing siblings with support and an understanding of what is
happening is vital (Mikkelson, 2004).
Given the feelings of uncertainty
and impending death the child and
family often have at time of diagnosis,
it is vital that health professionals are
able to manage these fears through
support and empowering individuals
with appropriate levels of education
(Luker et al., 1995). The literature highlights a number of factors that may
243
contribute to effective education of
patients and their families (Fant,
Clark, & Kemper, 2005; Glenton,
2002; Leydon et al., 2000). Over time,
patient populations have identified
barriers to education, such as the use
of medical jargon (Glenton, 2002).
However, parent experiences of and
preferences for the receipt of information and education at time of diagnosis of a child with ALL remains an
under-researched area.
Currently, there are no existing
published policies, protocols, or criterion within pediatric hematology and
oncology regarding parent education
or provision of information. The aim
of this study was to address the following research question: What are
the perceptions and experiences of parents caring for newly diagnosed children
with acute lymphoblastic leukemia in
relation to education given prior to the
first discharge from hospital?
Methods
The question outlined above was
broad, reflecting the lack of previous
research on this topic. A qualitative
methodology was therefore appropriate for the study (Bryman, 2008). The
desire to generate a participant perspective also led to the decision to
adopt principles of grounded theory
(GT) in this exploratory study (Charmaz,
2006; Glaser & Strauss, 1967). Semistructured interviews in person and
via telephone were used to gather parent experiences and opinions.
Sampling
The population of interest identified was parents/caregivers of children
diagnosed with ALL between February
1, 2009, and February 28, 2010. This
timeframe was chosen to ensure participants had time to process their child’s
diagnosis and use the information
given to them, while still being recent
enough to recall the experience.
The following exclusion criteria
were developed to protect the emotional well-being of families and prevent a
conflict of interest given that the principal investigator was employed as a
staff nurse within the unit studied:
•
Families who have received education during diagnosis and first
hospitalization from the principal researcher of this study.
•
Families of deceased children due
to the potentially sensitive nature
of the reflection involved in the
discussion for these families.
244
•
Children who had not yet been
discharged from hospital since
diagnosis because the opportunity to use the education in the
home and community setting
had not yet occurred.
Twelve families out of a possible
25 gave their informed consent to
participate in the study. Of the 12 participants, seven were under the
Shared Care service – where their care
is shared between their local hospital
and the tertiary center. Reasons for
non-participation were not collected;
however, it was evident that participants’ lack of literacy skills may have
contributed to this in some situations.
Ethnicity of patients was also identified using a short demographic questionnaire. The age of the patient and
parent, the parent’s educational level,
and the parent’s role (for example,
mother, father, or caregiver) were also
collected in this short questionnaire.
The sample of participants was noted
to be ethnically diverse and included
participants from New Zealand
European, New Zealand Maori, and a
variety of other ethnicities. The interview guide was developed following a
comprehensive review of the relevant
literature (Aburn & Gott, 2011).
Procedure
The majority of participants (n =
8) were interviewed in person when
in the hospital for their child’s clinic
appointment or during an elective
admission for chemotherapy. After
several parents expressed a keen interest in participating in the study but
found they had limited time available
while in Auckland for clinic appointments, phone interviews were also
offered. Families offered phone interviews had already expressed an interest in participating and were all from
Shared Care centers. Four phone
interviews were carried out. All interviews were audio recorded.
Analysis
The principal investigator transcribed word for word all interviews
within 24 hours of each interview.
When transcribing, codes were used
to identify pauses between conversations and non-linguistic cues, such as
sighs and laughter. This aided in the
analysis of data collected by adding
further meaning to the situation
(Polit & Beck, 2006). Each transcript
was re-read and cross-checked a second time with the audio recording to
ensure accuracy. The next stage of the
analysis involved identifying thematic categories or “coding.” A number of
codes were developed in the opencoding stage from the data collected
within this study from small ideas,
such as the information sharing between families, to larger concepts,
including personal experiences and
emotions felt during the initial education period at diagnosis.
During the open-coding process,
theoretical codes are also developed
(Artinian, Giske, & Cone, 2009). Theoretical coding is a more sophisticated
level of coding in which possible relationships between earlier developed
categories can be identified. In this
study, all data were re-read after transcription and after coding. Re-reading
or recoding old data may, in fact,
“spark new ideas” and themes that
were not seen in the initial process
(Charmaz, 2006).
The constant comparative method of analysis was also adopted within this study. Data were continuously
compared to data, data with categories, categories with categories, and
categories to concepts (Glaser &
Strauss, 1967). Comparison throughout the analysis process enables more
abstract ideas and theories to evolve,
while at the same time, allowing the
ability for sample size to be endlessly
assessed throughout (Bryant & Charmaz,
2010; Charmaz, 2006; Glaser & Strauss,
1967).
Results
Of the 12 participants in the study,
nine were mothers. There were varying levels of education among parents, with five participants having
secondary education and five having
completed education post-secondary
school. The remainder of participants
did not specify their education level.
The children who were diagnosed
with acute lymphoblastic leukemia
were of a variety of ages, ranging from
two to 14 years of age.
“It Was Like Learning
A Different Language”:
The Parent Experience
A common theme that emerged
in every interview was the overwhelming nature of experiencing the
diagnosis of a child with ALL, and
having to learn very quickly about the
disease and how to care for their
child. All parents identified that dealing with the emotional impact of
diagnosis made learning about leu-
PEDIATRIC NURSING/September-October 2014/Vol. 40/No. 5
kemia and the care their child required for the next two-three years
more difficult.
At the time, I was basically taking
everything on board for the family.
Dad I think was still in shock, so
I’ve become his bible…I didn’t know
anything. I thought that was the end
of the road. (Mother, 31 to 40
years of age, education status not
specified)
Many parents also identified
their lack of knowledge about
leukemia at the time of diagnosis. A
number of parents highlighted that
the general public perception of
leukemia is very negative and discussed this in relation to their reaction to their child’s diagnosis. They
reported that the public view of
leukemia is that of grueling treatment
and an imminent death:
My biggest fear, as I say, was that
my son was dying, I thought my son
was dying, and I didn’t know that
there was any real hope. (Mother,
31 to 40 years of age, education
status not specified)
Discussion with health professionals at the initial time of admission
was reported to be vital because it dispelled fears about their child dying
and meant parents could move forward and begin to understand their
child’s diagnosis and treatment.
Given the emotional impact of diagnosis, parents reported some difficulty in processing information in the
initial stages, and therefore, described
a journey through their development
of knowledge:
I mean, obviously now when you
look back, and it’s really easy, and
you think, oh yeah, you know whatever, but at the time it was probably
a little bit overwhelming,…and I
really struggled to understand what
all the stages were about and the
whole sort of…it was I guess, I think
it was just information overload
basically. (Mother, 31 to 40 years
of age; education status not specified)
Participants expressed mixed
opinions as to the amount of information they wanted their children to
know at the time of diagnosis. Many
acknowledged the role of an individual assessment of the child in making
the decision of what and when to tell
their child. Parents commented that
they wanted to have a choice as to
how much their child was told:
I do think that is something that has
to be done 1:1 as to the development
of the child and how much you as a
parent want to tell your child.
(Mother, 41 to 50 years of age,
secondary education)
Those who elected to discuss the
diagnosis with their children felt
nursing staff were supportive and
informed the child of all procedures
and basic information around diagnosis and treatment in a manner
appropriate to the child. A number of
parents articulated the role of the play
specialist in providing information
through medical play.
I found the play therapist really beneficial, and the nurses were all really
good, too. They always explained
everything to my daughter, they…
I’ve never had the impression….they
always told my daughter what they
were doing despite that she was only
four, and I thought that was really
good. (Mother, 31 to 40 years of
age, secondary education)
The general consensus among
participants when reflecting upon the
time of their child’s diagnosis was
that the information and education
they received met most of their needs
as a family. Parents identified gaps in
the process as being the need for more
information around topics, such as
food safety and infection; removal of
irrelevant information from the
“white education folder” (this folder
is given to all families when their
child is newly diagnosed with ALL; it
contains information about the unit,
their child’s condition, necessary care
at home, and signs to monitor, indicating an emergency situation); and
needing more time to sit and converse with nurses and doctors away
from their child’s room.
More information on food safety
and where he can’t go to minimize
infection. (Father, 41 to 50 years of
age, secondary education)
“There Were Two Nurses Who
Had a Big Impact”: The Role
Of the Health Professional
Health professionals and nurses
in particular have a major role to play
PEDIATRIC NURSING/September-October 2014/Vol. 40/No. 5
in the education of patients and their
families. This includes providing useful and appropriate information for
the family to provide safe and effective care to the child in the community (Luker et al., 1995). Many parents
reported they felt they could always
have a discussion with both the medical and nursing teams, and they were
given many opportunities to ask
questions. Some participants even
reported how important they felt
being empowered and able to ask
questions were to their understanding
of the situation and impending treatment.
Yes I did, and I still do, and I probably ask the same things all the
time, but I just need to get it right in
myself so I understand. (Mother, 41
to 50 years of age, secondary education)
There was a definite perception
from the participants that nurses
played a significant role in providing
support to both themselves and their
child during the initial period of diagnosis. Many parents identified that
consistent nursing care helped in
making this difficult time much more
manageable.
There were two nurses that made a
big impact on my husband and I,
and were particularly helpful in
those first 10 days… We happened
to have her for a few consecutive
days, and I just felt that she was like
everybody, but she was genuinely
working her ass off for my daughter.
(Mother, 31 to 40 years of age,
post-secondary education)
It was evident in several interviews that the medical team, in particular the oncologists, were viewed as
“the leaders” of the team. These parents also reflected they were the professionals who provided the education and knowledge needed about
their child’s condition and care.
However, when discussing nursing
influences, all participants also mentioned the information they gained
from nursing staff and how useful it
had been throughout their child’s
diagnosis and treatment.
Although the guided conversation attempted to focus predominantly upon the nursing aspects of family
education and information provision,
parents frequently mentioned their
experiences of communicating with
245
Education Given to Parents of Children Newly Diagnosed with Acute Lymphoblastic Leukemia: The Parent’s Perspective
their oncologist and the medical
team. There were mixed opinions of
frustration, support, and expressions
of a true partnership between parent
and doctor. Parents who expressed
frustration could often cite a specific
situation that had annoyed them,
and this commonly related to a lack
of information or not “being kept in
the loop.”
Even in the last couple of weeks,
we’ve had a couple of things
where…my son…had blood tests
done, and his medication protocol
was supposed to have changed, and
it didn’t. And the only reason I realized it should have been done was
that I had to come in and get a script
and then took a script to the pharmacy and it came back that the
dosage was different…it ended up,
he ended up his counts dropped like
anything. You know, you sort of
work around, well ok we don’t want
this to happen again, so why don’t
we…so you can come in and talk to
the oncologist about it, and I find
that the oncologists are really good.
They’ll listen to what you say. The
one thing that I don’t find is that
they don’t give you the full story a
lot of the time. So things are changing, and you’re not being told…it’s
all of a sudden, well we weren’t told
that. (Father, 41 to 50 years of
age, post-secondary education)
“It Was Kind of Comforting
that My Son’s Disease Had
A Folder”: Approach
Of Education
All parents could recall receiving
the “white education folder,” and
most reported having read it on at
least one occasion. Parents recalled
feeling apprehensive, while at the
same time, very keen to receive their
white folder. A few participants mentioned their anxiety and frustration in
the wait to be given their copy. There
were mixed opinions as to the value
of this folder; some parents found it
really beneficial and found comfort in
the fact that information about their
child’s treatment was collated in one
place, while other paren…
Purchase answer to see full
attachment