Evidence level and quality ratingArtic.docx

Evidence level and quality rating:
Article title:
Number:
Author(s):
Publication date:
Journal:
Setting:
Sample (composition and size):
Does this evidence address my EBP question?
Yes
No- Do not proceed with appraisal of this evidence
· Clinical Practice Guidelines LEVEL IV
Systematically developed recommendations from nationally
recognized experts based on research evidence or expert
consensus panel
· Consensus or Position Statement LEVEL IV
Systematically developed recommendations, based on research
and nationally recognized expert opinion, that guide members of
a professional organization in decision-making for an issue of
concern
· Are the types of evidence included identified?
· Yes
· No
· Were appropriate stakeholders involved in the development of
recommendations?
· Yes
· No
· Are groups to which recommendations apply and do not apply
clearly stated?
· Yes

· No
· Have potential biases been eliminated?
· Yes
· No
· Does each recommendation have an identified level of
evidence stated?
· Yes
· No
· Are recommendations clear?
· Yes
· No
Findings That Help Answer the EBP Question
Complete the corresponding quality rating section.
Johns Hopkins Nursing Evidence-Based Practice
Appendix F: Non-Research Evidence Appraisal Tool
Johns Hopkins Nursing Evidence-Based Practice
Appendix F
Non-Research Evidence Appraisal
1
· Literature review LEVEL V
Summary of selected published literature including scientific
and nonscientific such as reports of organizational experience
and opinions of experts

· Integrative review LEVEL V
Summary of research evidence and theoretical literature;
analyzes, compares themes, notes gaps in the selected literature
· Is subject matter to be reviewed clearly stated?
· Yes
· No
· Is literature relevant and up-to-date (most sources are within
the past five years or classic)?
· Yes
· No
· Of the literature reviewed, is there a meaningful analysis of
the conclusions across the articles included in the review?
· Yes
· No
· Are gaps in the literature identified?
· Yes
· No
· Are recommendations made for future practice or study?
· Yes
· No
· Expert opinion LEVEL V
Opinion of one or more individuals based on clinical expertise
· Has the individual published or presented on the topic?
· Yes
· No
· Is the author’s opinion based on scientific evidence?
· Yes
· No
· Is the author’s opinion clearly stated?
· Yes
· No
· Are potential biases acknowledged?
· Yes

· No
Organizational Experience
· Quality improvement LEVEL V
Cyclical method to examine workflows, processes, or systems
with a specific organization
· Financial evaluation LEVEL V
Economic evaluation that applies analytic techniques to
identify, measure, and compare the cost and outcomes of two or
more alternative programs or interventions
· Program evaluation LEVEL V
Systematic assessment of the processes and/or outcomes of a
program; can involve both quaNtitative and quaLitative methods
Setting:
Sample Size/Composition:
· Was the aim of the project clearly stated?
· Yes
· No
· Was the method fully described?
· Yes
· No
· Were process or outcome measures identified?
· Yes
· No
· Were results fully described?
· Yes
· No
· Was interpretation clear and appropriate?
· Yes
· No

· Are components of cost/benefit or cost effectiveness analysis
described?
· Yes
· No
· N/A
· Case report LEVEL V
In-depth look at a person or group or another social unit
· Is the purpose of the case report clearly stated?
· Yes
· No
· Is the case report clearly presented?
· Yes
· No
· Are the findings of the case report supported by relevant
theory or research?
· Yes
· No
· Are the recommendations clearly stated and linked to the
findings?
· Yes
· No
Complete the corresponding quality rating.

Community standard, clinician experience, or consumer
preference LEVEL V
· Community standard: Current practice for comparable settings
in the community
· Clinician experience: Knowledge gained through practice
experience
· Consumer preference: Knowledge gained through life
experience
Information Source(s)
Number of Sources
· Source of information has credible experience
· Yes
· No
· N/A
· Opinions are clearly stated
· Yes
· No
· N/A
· Evidence obtained is consistent
· Yes
· No
· N/A
Findings That Help You Answer the EBP Question
Quality Rating for Clinical Practice Guidelines, Consensus, or
Position Statements (Level IV)
A High quality
Material officially sponsored by a professional, public, or
private organization or a government agency; documentation of
a systematic literature search strategy; consistent results with
sufficient numbers of well-designed studies; criteria-based
evaluation of overall scientific strength and quality of included
studies and definitive conclusions; national expertise clearly
evident; developed or revised within the past five years.

B Good quality
Material officially sponsored by a professional, public, or
private organization or a government agency; reasonably
thorough and appropriate systematic literature search strategy;
reasonably consistent results, sufficient numbers of well-
designed studies; evaluation of strengths and limitations of
included studies with fairly definitive conclusions; national
expertise clearly evident; developed or revised within the past
five years.
C Low quality or major flaw
Material not sponsored by an official organization or agency;
undefined, poorly defined, or limited literature search strategy;
no evaluation of strengths and limitations of included studies;
insufficient evidence with inconsistent results; conclusions
cannot be drawn; not revised within the past five years.
Quality Rating for Organizational Experience (Level V)
A High quality
Clear aims and objectives; consistent results across multiple
settings; formal quality improvement or financial evaluation
methods used; definitive conclusions; consistent
recommendations with thorough reference to scientific
evidence.
B Good quality
Clear aims and objectives; formal quality improvement or
financial evaluation methods used; consistent results in a single
setting; reasonably consistent recommendations with some
reference to scientific evidence.
C Low quality or major flaws
Unclear or missing aims and objectives; inconsistent results;
poorly defined quality; improvement/financial analysis method;
recommendations cannot be made.
Quality Rating for Case Report, Integrative Review, Literature
Review, Expert Opinion, Community Standard, Clinician
Experience, Consumer Preference (Level V)
A High quality
Expertise is clearly evident, draws definitive conclusions, and

provides scientific rationale; thought leader in the field.
B Good quality
Expertise appears to be credible, draws fairly definitive
conclusions, and provides logical argument for opinions.
C Low quality or major flaws
Expertise is not discernable or is dubious; conclusions cannot
be drawn.
The Lived Experience of Parenting a Child
With Autism in a Rural Area:
the Invisible, Visible
Lindsey Hoogsteen, Roberta L. Woodgate
D
erived ftom the Greek word
"self," autism is a neurologi-
eal disorder where ehildren
seem to be enclosed in their
own world. Affecting boys three to
four times more than girls (Beauchesne
& Kelley, 2004; Behrman, Kliegman,
& Jenson, 2000), a once-thought rare
condition is becoming progressively
more common. Characterized by the
impaired ability to engage in social
interaction, impaired communica-
tion, restricted interests, and repeti-
tive behavior, children diagnosed
with autism face an incapacitating
life-long disability (Behrman et al.,

2000; Committee on Children with
Disabilities, 2001).
Although some researeh detailed
the lived experienee of what parents
of ehildren with autism faee (Cashin,
2004; DeGraee, 2004; Glass, 2001;
Gray, 1993, 1994, 2002; Woodgate,
Ateah, & Seeeo, 2008), the majority of
this work involved urban parents.
Few authors had researehed the expe-
rienees of families of ehildren with
disabilities who live in rural areas
(O'Callaghan, Allister, & Wilson,
2005; Seott-Findlay & Chalmers,
2001; Skinner & Sliflcin, 2007).
Moreover, no researeh was found on
the parenting experienees of parents
of ehildren with autism who live in
rural areas. To ensure that the eon-
cerns and needs of these parents and
children are adequately addressed,
research detailing these experiences
was warranted. Accordingly, a qualita-
Lindsey Hoogsteen, MN, RN, is a Register-
ed Nurse, Winnipeg Heatth Sciences Centre
- Chitdren's Hospitat, Winnipeg, t^anitoba,
Canada.
Roberta L. Woodgate, PhD, RN, is a
Canadian Institute of Health Research
Applied Chair in Reproductive, Chiid and
Youth Services and Policy Research, and a
Member of the Facutty of Nursing, University
of t/lanitoba, Manitoba, Canada.

This qualitative study explored the lived experiences of parents
parenting a child
with autism whiie living in a rural area. The philosophy of
hermeneutic phenom-
enology was used to guide this inquiry, and interviews of 26
families served as
primary data. Thematic statements were isolated using van
Manen's (1990)
selective highlighting approach. "Making the invisible, visible"
emerged as the
essence of the parents' experience. Parents shared that although
autism was an
invisible disability, they in fact made it visible in their constant
battles to ensure
their child received the best quality of life. The major themes of
this essence
included a) he's not the Rain Man, b) society's lack of
knowledge and under-
standing, and c) doing it on our own. Findings from this study
may be used to
guide program development that is concerned with improving
the quality of life of
families of children with autism living in rural areas.
tive study that explored the lived
experiences of parents parenting a
child with autism in a rural area was
undertaken. This article describes the
essence of the parents' experienee.
Method
The philosophy of hermeneutie
phenomenology as diseussed by van
Manen (1990) was used to guide this

inquiry. Hermeneutie phenomenolo-
gy is "essentially a philosophy of the
nature of understanding a partieular
phenomenon and the seientific inter-
pretation of phenomena appearing in
text or written word" (Speziale &
Carpenter, 2007, p. 88), phenomenol-
ogy being the lived experience and
hermeneutics being the interpreta-
tion of the essence of life (van Manen,
1990). The aim of hermeneutic phe-
nomenology is to explore human
phenomena to understand the struc-
ture or essence of the lived experience
(Dowling, 2007; Ray, 1994; Speziale &
Carpenter, 2007).
Ethical Considerations
The University of Manitoba
Education/Nursing Researeh Commit-
tee approved the study. Both written
and verbal eonsent was obtained ftom
eaeh partieipant, and all efforts were
made to uphold eonftdentiality.
Sampling and Recruitment
This study took place in a mid-
Western Canadian province and
incorporated families ftom rural areas
who were parenting a child with
autism. An intermediary ftom two
urban centers who provided resources
for children with autism and their
families was asked to assist with the

recruitment of participants. In total,
191 letters of invitation were sent out
to potential participants. Of this
group, 28 families responded, with a
final sample size of 26 families
because two families responded after
the interviews were completed. The
first author completed all interviews,
with the rriajority conducted in the
homes of the participants, while two
were conducted at mutually agreed-
upon locations.
All participating 26 families took
part in semi-structured, open-ended
interviews that were audio-tape-
recorded. In total, 22 interviews were
done by mothers alone, two were
completed with both the mother and
father present, and two were complet-
ed by fathers. Study information, as
well as demographic and consent
forms, were distributed prior to the
start of the first interview and
reviewed with each participant.
Parents were asked to describe what it
PEDIATRIC NURSING/September-Oetober 2013/Vol. 39/No. 5
233
The Lived Experience of Parenting a Child with Autism in a
Rural Area: Making the Invisible, Visible
was like to parent a child with autism

in a rural community and to explain
their thoughts and feelings, their
challenges and opportunities, and
their needs.
Participating families were from
all regions of the mid-Western
province and lived between 15 and
800 kilometers away from an urban
city. Participants ranged from 26 to 50
years of age, and the majority of par-
ticipants were Caucasian. Thirty-three
children within the 26 participating
families were given the diagnosis of
autism spectrum disorder. Addition-
ally, 13 children had co-morbid diag-
noses, including developmental
delay, attention deficit hyperactivity
disorder (ADHD), Tourette syndrome,
and ventricular tachycardia. Of the
participating children, 21% were non-
verbal, while the remaining 79% were
verbal or displayed some form of
speech. The majority of the children
with autism were boys (88%), and the
children ranged in age from 2 to 23
years old.
Data Analysis
All field notes and interviews
were transcribed verbatim and ana-
lyzed. Thematic statements were iso-
lated using van Manen's (1990) selec-
tive highlighting approach. By select-
ing appropriate phrases and capturing

specific statements, the meaning of
the experience emerged. Collabora-
tive analysis between both authors
was an ongoing process. Once poten-
tial themes had been identified, the
first author worked in collaboration
with each participant in a follow-up
reflective interview. The draft descrip-
tion of the themes began as a starting
point for the author and participant
and allowed for further sharing of the
lived experiences. Both authors then
reviewed the follow-up interviews
and further refined and finalized the
themes. The end result was the devel-
opment of a narrative description of
the essence of the parents' experience.
Results
The Essence of the Experience
The essence of making the invisible,
visible emerged as what it was like to
parent a child with autism while liv-
ing in a rural area. Parents shared that
although autism was an invisible con-
dition, they, in fact, made it visible in
their constant battles to ensure that
their child received the best quality of
life within a community that support-
ed and valued their child. Parents
emphasized that the invisibility of
autism made it difficult to obtain a
diagnosis, gain needed support, and

explain their child's behaviors.
They have no elue beeause "C" looks
perfeetly normal. He walks. He
talks. He doesn't have, you know, a
stumble or a limp, so you ean't see a
physical disability. (PI7)
Autism was not a visible disabili-
ty to members of the rural communi-
ty. When the negative characteristics
of autism were displayed (e.g.,
tantrums, meltdowns, yelling, disrup-
tive behavior), the majority of the
community members related it to bad
parenting or to having an uncontrol-
lable child. As one parent noted,
"Most people look at you and they
just think he's a bad kid. Because he
looks normal. He acts normal, well
somewhat normal, and talks normal"
(Pll). Autism was invisible to the
untrained eye yet visible in ways that
people deemed as undesirable.
Parents felt that community
members were unaware and unedu-
cated of the difficulties they faced
when parenting a child with autism.
Over-stimulation and needing time to
decompress, challenging new envi-
ronments, and difficulties with com-
munication were all obstacles en-
countered by participating parents.
Behavioral issues, tantrums, scream-
ing, and physical violence toward

themselves and others were further
occurrences for children with autism.
Difficulties in social settings and no
concept of safety led to the need for
vigilant parenting by participants.
Parents also described their children's
challenging ritualistic behavior and
picky eating habits. One parent
expressed: "Different people have said
he sure doesn't look autistic.. .He does-
n't act autistic, but I said that's why it's
called a spectrum. When you see him
on a bad day then you'd see autism"
(P15). In making the invisible, visible,
parents had to overcome three barri-
ers: 1) he's not the Rain Man, 2) soci-
ety's lack of knowledge and under-
standing, and 3) doing it on our own.
He's Not the Rain Man
To make autism visible, parents
first had to come to understand and
accept the diagnosis of autism. When
asked about prior knowledge of
autism, parents were extremely limit-
ed in their understanding of this dis-
order. The majority of the parents
made reference to the movie Rain
Man (1988), starring Dustin Hoffman
and Tom Cruise, as their only connec-
tion to autism. As one parent stated:
"He's not Rain Man. That's what I
thought because that's all anybody
knows about autism" (P9). "He's not

the Rain Man" was the reaction of the
majority of parents. Parents only
knew the extremes of autism: the
head banging, the rocking, and the
lack of emotion. Parents had difficul-
ty relating their child to the character
played by Dustin Hoffman, and as
one parent stated: "I thought of Rain
Man...I thought, well he's not bang-
ing his head against the wall" (P19).
This limited and lack of knowledge
of autism by parents led to initial reac-
fions of denial, fear, and shock. One
parent described the diagnosis as: "It
was just numbing...the first thing I did
was totally deny it. 'Cause I couldn't
figure out how can you sit and watch
my kid for five minutes and give me a
diagnosis that is so bizarre" (P22).
Parents started their journey in denial
and confusion and had difficulty
comprehending how their child who
displayed many different characteris-
tics than the Rain Man could still be
diagnosed with the same disorder.
/ was willing to entertain it, but at
the time, I didn't think it was that
serious beeause he didn't have, you
know, he makes eye eontaet, and he
smiles a lot, and he likes to be around
people...at the time my knowledge of
autism was so limited. (P19)
Besides denial and confusion,

parents described a variety of other
initial reactions. Parents grieved and
defined the diagnosis as a "death in
your family. You still have that person
here. But something dies" (P22).
Other parents mourned and stated: "I
just cried when she told me that"
(;P20). While others were left devastat-
ed and felt like "your world falls
apart...and what dreams you have for
your child are gone" (P14). Parents
also displayed feelings of anger.
/ was so angry and so insulted, and
when we left there, I remember look-
ing at him through the rear view
mirror 'eause we were driving away,
and he was just happy as a elam in
his ear seat. And I'm thinking, I
don't even know who you are, like
how eould that possibly be. (P13)
234 PEDIATRIC NURSING/September-October 2013/Vol.
39/No. 5
Eventually, all participating par-
ents had to learn acceptance. As one
parent explained it: "I cried for about
a week straight. Then I kind of got to
that place where we were just going to
work with it" (P2). To reach this
acceptance, parents had to under-
stand autism and had to learn from
their child. From the Internet to

libraries to family and close friends,
any information about autism was
sought. One parent shared: "And
then within two days, I was at the
library looking for information...I was
like, okay now, I have to figure this
out, I have to find out where we're
going and where we're at" (PI3).
Over rime, parents learned that
autism was a spectrum and that a
child diagnosed with this disability
displayed an array of characterisrics
that were exhibited in multiple ways
and discovered that "it's kind of like,
so he has autism, and he has autism,
but they're totally different" (P22).
With a thorough understanding of
aurism, parents were relieved to final-
ly put a name to what they knew was
atypical in their child; one parent stat-
ed: "It scared the heck out of us. But it
was good that we had a name for it"
(P25). By comprehending autism, par-
ents were able to alleviate their frustra-
fions in exchange for reason. They
understood autism, and therefore,
could better understand their child. By
progressing through denial and fear of
the diagnosis to acceptance, the true
meaning of having a child with
autism became visible to parents.
Society's Lack of Knowledge
And Understanding

Another barrier identified by par-
ents was their rural community's lack
of knowledge and understanding. This
resulted in families of cfiildren with
autism facing a stigma of being differ-
ent. To battle this stigma, parents
taught their communities about autism
while continuously advocating on
their child's behalf. According to the
parficipants, the sfigma that families
experienced was more often due to the
lack of understanding of aurism rather
than to people being judgmental.
Lack of knowledge, and that's the
biggest thing, like when I've gone up
to those people or when we've held
telehealth sessions, or when I was
on the radio, and just the most com-
mon thing was that people just
didn't know what it was. (P4)
Community members became
aftaid of what they did not know, and
people "were scared of the autism"
(P14). Parücipating parents became
vulnerable to premature judgments
that were described by one partici-
pant as "people will make judgments.
Most of their judgments were of igno-
rance. They don't even know what it
is" (P15). Most parents perceived that
others viewed them to be "bad par-
ents" and their children with aurism
to be "bad children." One parent
expressed: "the things that would

really frustrate me are just people that
automatically assume that he's just a
bad child if he's misbehaving in pub-
lic" (P4). Another mother stated: "If I
take him into the store now, and he's
7, and he's this big, and he starts act-
ing up, then I'm the bad parent,
right?" (P16). Afthough parents
acknowledged it was society's lack of
understanding that led to these judg-
ments, parents nonetheless felt angry
and disheartened. One participant
reinforced: "You get home, and you're
just destroyed because it replays in
your mind, and it is like why are peo-
ple so ignorant? I know they don't
understand, but how do I make them
understand?" (P22).
Making the invisible, visible was one
way parents were able to help their
child become an accepted member of
their rural community and enabled
the best possible life for their child.
Families found that the best strategy
was to be open, honest, and to share
the diagnosis of aufism with their
community. The more parents talked
about autism, and the more they
explained and taught the community,
the more support they received.
Through this openness, one parent
described their community as: "It's
more of a welcoming community now
like we're finding that we're not being
judged as much" (P4). By making

auüsm visible, communiries became
more knowledgeable and understand-
ing, and instead of sending feelings of
isolarion and srigmatism, communi-
ries became a family of support.
Doing It on Our Own
From diagnosis to treatment to
advocaring, "doing it on our own"
emerged as the third major barrier in
the essence of making the invisible, visi-
ble. From inirial diagnosis, parents felt
they were on their own. One parüci-
pant stated: "I feel like there should be
someone following him, and I don't
know if they typically do; it's kind of
like they diagnose them, and then
you're done" (P23). Parents used their
surrounding environment to seek out
as much informarion as they could.
Parents used the media, Internet, TV,
books, close fiiends, and relatives.
Following diagnosis, parents searched
to find what was offered for their child,
what services were obtainable, and
how they were able to access them.
All parents received a diagnosis of
autism for their child and were never
seen again by the specialist or even a
pediatrician or rural physician for any
follow up in regards to the diagnosis
of autism.

That to me is frustrating because
I've often used the analogy if you
were diagnosed with cancer even
though it would be the nurses that
might give you the treatment and
the radiation specialist who give you
the radiation, you'd still be followed
up by your doctor, and that just
doesn't seem to exist (P15)
Parents stressed that a follow-up
appointment soon after the diagnosis
period with the specialist or their
child's physician would have provid-
ed the opportunity for them to fur-
ther discuss and learn more about
aurism. Multiple parents menrioned
that "they should really have, after
the diagnosis, some type of book or
something" (P5). Parents were thrown
into the world of autism with limited
knowledge regarding the characteris-
rics and demands of this diagnosis.
Parents had to be the one to ad-
vocate for their child; they had to bat-
tle the health care system along with
the educational system. To parents,
"the system" referred to the array of
appropriate services, including heath
care professionals and the education-
al settings that were designed to
enable success in children with
autism but were often inaccessible.
Getting the required support and
services only came through persist-

ence and determination.
I applied and was denied, I was
applied and denied, applied and
denied...And I finally called there,
and I spoke to a very nice gentle-
man, and I said, "What do I have to
do [to receive an educational assis-
tant for their child diagnosed with
autism]?" (P9)
Parents were on their own with
educating themselves, seeking out
PEDIATRIC NURSING/September-October 2013/Vol. 39/No. 5
235
The Lived Experience of Parenting a Child with Autism in a
Rural Area: Making the Invisible, Visible
services, and finding respite workers.
As one parent described the difficulty
of obtaining a respite worker: "He
told me right off the bat that he did
not have anybody that could come
out here and that if I wanted some-
one, I'd probably have to do my best
to find them" (PI).
Participating families believed
that in terms of autism, rural commu-
nities had less of everything and
lacked services and resources. Rural
communities lacked diversity of serv-

ices and professionals who were able
to work with children with autism.
Although living rurally meant they
did not have access to certain services
and resources, parents learned to use
all they had to their advantage.
Overall, participating parents believed
when living in a rural community
and parenting a child with autism,
they were often on their own in terms
of resources, services, and fulfilling
their everyday needs of parenting a
child with autism.
Discussion
The Essence of the Experience
Making the invisible, visible emerg-
ed as the ultimate essence of parents'
lived experience of parenting a child
with autism while living in a rural
area. Ray (2001) first intiroduced the
phenomenon of making the invisible
visible in the context of childhood
chronic illness. Specifically, Ray
(2001) described the invisible work
required by parents in parenting a
child with a chronic illness or disabil-
ity and the skilled responsibilities par-
ents assume that need to be made vis-
ible. However, instead of having a
focus on the disability itself, Ray
(2001) described parents' experiences
of making the invisible responsibili-
ties and challenges that incur when

caring for a child with disabilities vis-
ible. Comparable to the study by Ray
(2001), parents parenting a child with
autism spoke to the time and commit-
ment spent preparing their child to
function in the social world and in
their community. Parents described
the consuming daily activities, such
as grooming, dressing, and communi-
cation, that all took longer with a
child with autism. Although they did
not have to learn specific medical
aspects as did the parents in Ray's
(2001) study, they had to be vigilant,
consistent, and prepared for the
unknowns of autism.
In the context of autism, the
invisibility of autism is documented
throughout the literature (Cashin,
2004; Glass, 2001; Gray, 1993, 2002;
Midence & O'Neill, 1999; Woodgate
et al., 2008). Parenting a child with
autism can be a challenging and frus-
trating experience due to the invisible
nature of the disability. Gray (1993,
2002) found that the invisibility of
autism was associated with increased
stress in families, causing a sense of
isolation. Exacerbating this stress in
Gray's (1993, 2002) stiidies was the
extreme disruptive behavior and
social inappropriateness of the child
with autism. Many parents in this
rural study had similar feelings and
experiences as those described by

Gray (1993, 2002).
Comparable to the research of
urban parents by Woodgate et al.
(2008) and Gray (2002), rural parents
described similar feelings of isolation
when autism was invisible in their
community. Fortunately, for parents
in this rural article, this isolation felt
from others dissipated once autism
became visible in their community.
Unlike the article by Woodgate et al.
(2008), parents of rural communities
failed to use the term "isolation" to
define life with autism, rather to only
use the word to describe the lack of
available professional support and
services. The support rural communi-
ties provided enabled parents a sense
of inclusion, and therefore, disbanded
the sense of isolation that was
described by the urban parents of
research by Woodgate et al. (2008),
Gray (2002), and Mackey and
Goddard (2006). A discussion of each
theme of the essence will be exam-
ined by incorporating a comparison
of previous research findings to those
of this article.
He's Not the Rain Man
Limited knowledge and under-
standing of autism by participants led
to initial reactions of fear, denial, and
shock. Sen and Yurtsever (2007)

explored the initial reactions of rural
parents when they first learned their
child was disabled. Similar to rural
parents of children with autism in
this article, shock, denial, suffering,
and depression were described as pri-
mary reactions of parents in the arti-
cle by Sen and Yurtsever (2007).
Further, Midence and O'Neill (1999)
described reactions of confusion and
feelings of guilt and despair by the
rural parents of children with autism.
However, both above mentioned arti-
cles described the importance of par-
ents reaching acceptance. In this arti-
cle of rural families, autism became
visible to parents by the research and
education they sought. In under-
standing autism, parents became
empowered to make the right choices
for their child, allowing them to pro-
vide the best life possible. Under-
standing autism enabled parents to
understand their child.
Society's Lack of Knowledge
And Understanding
Society's lack of knowledge and
understanding was cause for concern
for participating families as well as
families in past urban studies (Gray,
2002; Woodgate et al., 2008). Difficul-
ties, including embarrassment in
social settings, hostile or insensitive

reactions from the public when the
child behaved inappropriately, and
feelings of being judged by other par-
ents based on their child's actions,
were all described in the literature due
to the invisibility of autism (Cashin,
2004; Glass, 2001; Gray, 1993, 2002).
Gray (1993, 2002) explained how the
normal appearance of a child with
autism, combined with the lack of
knowledge from society, increased the
incidents of hostile remarks to parents
in regard to any unwanted and inap-
propriate behavior from their child.
Further, Midence and O'Neill (1999)
found that the "invisible condition"
of autism made things worse for par-
ents regarding the lack of an under-
standing by society. The difference
found in the articles by Cashin (2004),
Glass (2001), Gray (1993, 2002), and
that of this rural article was that once
autism became visible within the com-
munities, parents reported a decrease
in stigmatism. Instead of feeling isolat-
ed and alone, families were embraced
by a community that supported them.
Nevertheless, as evidenced in this arti-
cle. Gray (2002) concluded that
increasing the public awareness of
autism may reduce the stigma
attached to parenting a child with
autism, and therefore, decrease the
sense of isolation, in turn allowing
communities to embrace and provide
valuable support for families.

Doing It on Our Own
Doing it on our own emerged as
the third major barrier to the essence
of making the invisible, visible. Woodgate
et al. (2008) discovered that urban
parents parenting a child with autism
236 PEDIATRIC NURSING/September-October 2013/Vol.
39/No. 5
had similar feelings to the parents in
this article and described the essence of
parenfing a chUd with autism as "Uving
in a world of our own" (p. 1078).
Parents in the article by Woodgate et
al. (2008) believed they were on their
own for all aspects of daily living,
especially those related to the difficul-
ties and challenges of parenting a
child with autism. Further, Mackey
and Goddard (2006) also found that
mothers parenting a child with intel-
lectual disabilities described feelings
of being on their own. Participating
rural parents faced multiple chal-
lenges and barriers with few resources;
getting the required support for their
child with autism only came through
persistence and determination.
Limitations
There are two key limitations

with respect to this article. Primarily,
researchers did not interview profes-
sionals and parents within the com-
munity who were responsible for
implementing the programs put in
place to enhance the lives of children
and families parenüng a child with
autism. Although parents from div-
erse ethnic backgrounds participated
in the study, the majority of the par-
ticipants were Caucasian mothers.
While the purpose of purposive sam-
pling was to invite the primary care-
giver, having a sample consisting
mostly of mothers may limit findings.
Nonetheless, variety was found with-
in the ages of participants, material
status, and educational background.
Implications
Findings from tfiis article provid-
ed new insights into the lives of rural
parents parenting a chUd with aufism.
In addition, this article provided
grounding for future research. Rural lit-
erature looking at parenting a child
with aufism was extremely rare, and
future research is warranted to further
the findings. In addifion, increased
research on living ruraUy and parent-
ing a child with disabilifies or special
needs is crucial. Research to assess the
knowledge level and experience that
rural health care and social providers

have about aufism would identify gaps
in the field of aufism and confinue to
make visible this invisible disability.
Practice
This study reinforces that more
support is needed for rural parents
with chüdren with aufism. Support is
especially warranted in the immediate
time after inifial diagnosis and in fol-
low up to assess coping strategies and
needs of parents. A toolkit specifically
designed for families living in rural
communifies could be made to con-
tain valuable informafion in terms of
specific resources available, accessible
services, and links for supports both
within the community and for profes-
sional organizafions. Further, a nurse
or social worker who is able to work
with families from diagnosis through
transifion fimes and within the school
system would provide immense sup-
port for these rural famUies.
Educating nurses and health care
professionals, families, friends, and
communities who lack the knowledge
of autism should be top priority to
help promote an understanding of
what autism means to the parents
and the demands it places on daily
life. Additionally, rural nurses and
other health care and social service

providers should be assessed on their
level of knowledge of autism and be
provided with opportunities to fur-
ther their knowledge and obtain
strategies to enhance the lives of par-
ents parenfing a child with autism.
Technology, such as delivery of
health-related services and informa-
tion via telecommunications, should
be used more fiequently to disperse
knowledge and education in regards
to autism to parents, health care pro-
fessionals, and communities.
Nurses and other health care and
social service providers need to under-
stand that parents know their child
best and they need to listen to parents
and validate their concerns. Collab-
oration between health care profes-
sionals is crucial, as weU as being
open-minded to the different treat-
ment options and types of support
available. Further, increased educa-
tion and training on autism and
developmental milestones is also war-
ranted for all nurses, especially those
in primary health care. ^ B
References
Beauchesne, M.A., & Kelley, B.R. (2004).
Evidence to support parental concerns as
an early indicator of autism in children.
Pédiatrie Nursing, 30(1), 57-67.

Behrman, R.E., Kliegman, R.M., & Jenson,
H.B. (2000). A/e/son textbook of pedi-
atrics (16th ed.). Philadelphia: W.B.
Saunders Company
Cashin, A. (2004). Painting the vortex: The
existential structure of the experience of
parenting a child with autism. Interna-
tional Forum of Psychoanalysis, 73(3),
164-174.
Committee on Children with Disabilities.
(2001). Technical report: The pediatri-
cian's role in the diagnosis and manage-
ment of autistic spectrum disorder in chil-
dren. Pediatrics, 707(5), e85.
DeGrace, B.W. (20Ó4). The everyday occupa-
tion of families with children with autism.
The American Journal of Occupational
Therapy, 58(5), 543-550.
Dowling, M. (2007). From Husserl to van
Manen. A review of different phenomeno-
logical approaches. International Journal
of Nursing Studies, 44(1), 131-142.
Glass, P. (2001 ). Autism and the family: A qual-
itative perspective. Unpublished doctoral
dissertation, Virginia Polytechnic Institute
and State University, Blacksburg, VA.
Gray, D.E. (1993). Perceptions of stigma: The
parents of autistic children. Sociology of
Health and Illness, 75(1), 102-120.

Gray, D.E. (1994). Coping with autism:
Stresses and strategies. Sociology of
Health and Illness, 76(3), 275-300.
• Gray, D.E. (2002). 'Everybody just freezes.
Everybody is just embarrassed': Felt and
enacted stigma among parents of chil-
dren with high functioning autism.
Sociology of Health and Illness, 24(6),
734-749.
Mackey S., & Goddard, L.D. (2006). The expe-
rience of health and Wellness in mothers
of young children with disabilities. Journal
of Intellectual Disabilities, 70(4), 305-315.
Midence, K., & O'Neill, M. (1999). The experi-
ence of parents in the diagnosis of
autism: A pilot study Autism, 3(3), 273-
285.
Q'Callaghan, A.M., Allister, L., & Wilson, L.
(2005). Barriers to accessing rural paedi-
atric speech pathology services: Health
consumers' perspectives. Australia
Journal of Rural Health, 73(3), 162-171.
Ray, M.A. (1994). The richness of phenomenol-
ogy: Philosophic, theoretic, and méthod-
ologie concerns. In J.M. Morse (Ed.),
Critical issues in qualitative research
methods (pp. 117-133). Thousand Oaks,
CA: Sage Publications, Inc.
Scott-Findlay S., & Chalmers, K. (2001). Rural.
families' perspectives on having a child

with cancer. Journal of Pédiatrie
Oncology Nursing, 78(5), 205-216.
Sen, E., & Yurtsever, S. (2007). Difficulties
experienced by families with disabled
children. Journal for Specialists in
Pédiatrie Nursing, 72(4), 238-252.
Skinner, A.C., & Slifkin, R.T (2007). Rural/
urbari differences in barriers to and bur-
den of care for children with special
health care needs. The Journal of Rural
Hea/fh, 23(2), 150-157.
Speziale, H.J., & Carpenter, D.R. (2007).
Oualitative research in nursing: Ad-
vancing the humanistic imperative (4th
ed.). Philadelphia: Lippincott Williams &
Wilkins.
van Manen, M. (1990). Researching lived
experience: Human science for an action
sensitive pedagogy. London, Ontario,
Canada: Althouse.
Woodgate, R.L., Ateah, C, & Secco, L. (2008).
Living in a world of our own: The experi-
ence' of parents who have a child with
autism. Qualitative Health Research,
18(B), 1075-1083.
PEDIATRIC NURSING/September-October 2013/Vol. 39/No. 5
237

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individual use.
Wk 6 article critique
Purpose
The purpose of this assignment is to provide the graduate
nursing student opportunity to practice reading and critiquing
research articles for application to an evidence-based practice.
Course outcomes
1. Integrate evidence-based practice and research to support
advancement of holistic nursing care in diverse healthcare
settings. (PO 1)
2. Integrate knowledge related to evidence-based practice and
person-centered care to improve healthcare outcomes. (PO 1, 5)
3. Develop knowledge related to research and evidence-based
practice as a basis for designing and critiquing research studies.
(PO 1, 5)
4. Analyze research findings and evidence-based practice to
advanced holistic nursing care initiatives that promote positive
healthcare outcomes. (PO 1,5)
Due Date: Sunday 11:59 PM MT at the end of WEEK 6
Total Points Possible: 130 points
Requirements
Description of the Assignment
During NR505 you will write three research article critiques.
Each critique will involve writing a two-page analysis of an
article as well as completing the Johns Hopkins Research
Appraisal Tool that is applicable to the article (qualitative,
quantitative or Non-research evidence). For Week 6 you will
critique a qualitative research article.

Criteria for Content
1. Introduction: Provide introduction to article topic/focus,
authors and specific aim of assignment.
2. Critique of Article (Body):
a. Identify the type of qualitative method of the study.
b. Content of critique should include at a minimum:
i. participant sampling,
ii. questionnaires/tools,
iii. ethics,
iv. analysis of findings,
v. limitations,
vi. discussion section,
vii. Summary: Application (translation) to practice specialty,
and future implications.
c. Refer to and complete the Johns Hopkins Research Appraisal
Tool.
Article Review Steps
Step 1: Go to the Chamberlain Library and select
a qualitative research article on your topic of interest published
within the last three (3) years.
Step 2: Write a two-page critique of the article in a Word Doc
supported by course readings.
Step 3: Complete the Johns Hopkins Quantitative Research
Appraisal Tool. No credit for partially completed sections of
The Appraisal Tool.
Step 4: Upload your Word doc analysis and Johns Hopkins
Research Appraisal Tool (in the appendix) to TurnItIn.
Preparing the Assignment:
1. APA Format according to 6th edition.
2. Word Doc
3. Word Doc Format:
Cover page, no abstract, introduction (no heading per APA),
body of the paper/review, reference list, appendix with Johns
Hopkins appraisal doc. For review sections refer to your
readings and the Johns Hopkins Research Appraisal Tool.
List should include the chosen article and other resources used

to construct the review, such as course textbook, Johns Hopkins
Evidence Based Practice: Model and Guidelines, and How to
Read a Paper by Greenhalgh (2014).
Rubric
NR505NP WK4,5,6 Article Critique_SEPT19
NR505NP WK4,5,6 Article Critique_SEPT19
Criteria
Ratings
Pts
This criterion is linked to a Learning OutcomeIntroduction
Required content for this section includes:
• Introduction to chosen article
• Succinct overview of assignment focus.
10.0 pts
Excellent
Content includes well-written, succinct, information that
includes: Article topic/focus, authors and specific aim of
assignment.
9.0 pts
V. Good
Content is well-written but omits or is thin in one area.
8.0 pts
Satisfactory
Section content is basic in its explanation of the article
(overview) and the purpose of the assignment but lacks specific
detail and depth.
5.0 pts
Needs Improvement
All content is included but difficult to piece together in its
explanation of the article (overview) and the purpose of the
assignment OR a piece of the content is missing, for example,
overview of assignment focus, yet what is written is well stated.
0.0 pts
Unsatisfactory
Missing OR Section content is vague in its introduction of the
article (overview) and the purpose of the assignment is missing

OR article overview is missing, and purpose of the assignment
is vague.)
10.0 pts
This criterion is linked to a Learning OutcomeCritique of
Article
Required content for this section includes:
• Methodological review specific to type (non-research versus
research): (use text and resources)
• Ethical review (not always present with guidelines or
systematic reviews)
• Analysis of findings
• Limitations
• Discussion
• Application to practice (translation)
• Future implications
50.0 pts
Excellent
All content is included in the critique with comprehensive
definitions, examples and with in-text citations that support the
article evaluation with depth.
46.0 pts
V. Good
All content is included in the critique. One or two sections may
be included without depth: For example, Definitions, examples
and with in-text citations that support the article evaluation
with depth. Or: All content has explanatory depth of analysis
including definitions, examples and in-text citations supporting
the analysis, however, a content area may be missing (such as
ethical review or limitations)
42.0 pts
Satisfactory
Two or three content areas are missing, or all content areas are
included but there is inconsistent depth/ integration of
definitions, examples and in-text citations that support the
article evaluation with depth

25.0 pts
Needs Improvement
Four or more content areas are missing, or all content areas are
included but there is little to no depth/ integration of
definitions, examples and in-text citations that support the
article evaluation with depth.
0.0 pts
Unsatisfactory
Critique is vague, without structure, without discernible
integration of definitions, examples, and in-text citations that
support the writing.
50.0 pts
This criterion is linked to a Learning OutcomeJohns Hopkins
Appraisal Tool
50.0 pts
Excellent
All sections of the Appraisal Tool are completed for the correct
article review (for example, the non-research tool is used for
guidelines, the qualitative tool is used for qualitative review).
46.0 pts
V. Good
Tool is included, is the correct tool, and is missing: A. Non-
Evidence Tool: 1 of the 6 sections B. Evidence Tool: 1 section
missing
42.0 pts
Satisfactory
Tool is included, is the correct tool, and is missing: A. Non-
Evidence Tool 2 or 3 of the 6 sections B. Evidence Tool: 2
sections missing
25.0 pts
Needs Improvement
Tool is included and is missing: A. Non-Evidence Tool 4 or
more of the 6 sections B. Evidence Tool – 3 more sections
missing.
0.0 pts

Unsatisfactory
Tool is missing or the wrong tool is used.
50.0 pts
This criterion is linked to a Learning OutcomeOrganization &
Format
Requirements:
• Cover (title) page
• No abstract
• Introduction
• Body of paper and reference page must follow APA guidelines
as found in the 6th edition of the manual. This includes the use
of headings for each section of the paper except for the
introduction where no heading is used.
15.0 pts
Excellent
All aspects of paper follow APA guidelines (cover, no abstract,
introduction, headings (not on introduction), body of paper and
reference page
14.0 pts
V. Good
1-3 APA errors
12.0 pts
Satisfactory
4-5 APA errors
8.0 pts
Needs Improvement
6-9 APA errors
0.0 pts
Unsatisfactory
10 or greater APA errors
15.0 pts
This criterion is linked to a Learning OutcomeSyntax, grammar,
spelling
Rules of grammar, spelling, word usage, and punctuation are

followed and consistent with formal written work as found in
the 6th edition of the APA manual.
5.0 pts
Excellent
There are no grammatical, spelling, word usage or punctuation
errors.
4.0 pts
V. Good
1-3 grammatical, spelling, word usage or punctuation errors.
3.0 pts
Satisfactory
2.0 pts
Needs Improvement
0.0 pts
Unsatisfactory
10 or greater grammatical, spelling, word usage or punctuation
errors.
5.0 pts
Total Points: 130.0

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