Article

European Physical Education Review

2019, Vol. 25(2) 374–388
The meaning of youth physical ª The Author(s) 2017
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DOI: 10.1177/1356336X17740143
journals.sagepub.com/home/epe
individuals with psoriasis:
A retrospective inquiry
Justin A Haegele
Department of Human Movement Sciences, Old Dominion University, Norfolk, Virginia, USA

Patrick B Wilson
Department of Human Movement Sciences, Old Dominion University, Norfolk, Virginia, USA

Xihe Zhu
Department of Human Movement Sciences, Old Dominion University, Norfolk, Virginia, USA

T Nicole Kirk
Department of Human Movement Sciences, Old Dominion University, Norfolk, Virginia, USA

Abstract
The purpose of this study was to examine the meaning that individuals with psoriasis ascribed to
their youth physical activity experiences. This qualitative, retrospective inquiry was based on an
interpretative phenomenological analysis. A purposive sample of six participants (ages 20–46; four
female, two male) residing in the United States were included. Semi-structured, audio-taped
telephone interviews and reflective field notes acted as sources of data for this study. Thematic
development was undertaken using a four-step interpretative phenomenological analysis process
and themes identified across participants were summarized, presented as results, and discussed
concurrently. Based on the data analysis, three interrelated themes were constructed from the
participant transcripts: (a) “I just stopped signing up”: the impact of physical discomfort; (b) “kids
started calling me ‘Flake’”: embarrassment, social anxiety, and bullying; and (c) “I felt like he was
calling me out”: disclosing psoriasis to stakeholders. These three constructed themes provide
unique insight into the embodied experiences of those with psoriasis, and fill a previous gap in the
extant literature. Practitioners aiming to increase physical activity engagement among this popu-
lation can use these findings to design more effective programmes and strategies that address the
needs identified in this investigation.

Corresponding author:
Justin A Haegele, Department of Human Movement Sciences, Old Dominion University, 4700 Powhatan Avenue,
2009 Student Recreation Center, Norfolk, VA 23464, USA.
Email: jhaegele@odu.edu
Haegele et al. 375

Keywords
Dermatology, physical education, adapted physical activity, embodied experiences, psoriasis

Introduction
Psoriasis is a chronic, immune-mediated dermatological disease, with characteristic signs that
include raised areas of erythematous skin and silvery scaling (Griffiths and Barker, 2007). Affecting
approximately 2–3% of the United States population, psoriasis is one of the most prevalent immune-
mediated diseases nationally (Raychaudhuri et al., 2014). The visual lesions of psoriasis can impact
psychosocial functioning (Kurd et al., 2010) and cause physical discomfort, which ultimately
translate to reduced quality of life for people living with this disease (Rapp et al., 1999). Recently,
attention is being paid to the effect psoriasis has on the risk of serious cardiometabolic
co-morbidities, and it is now recognized that moderate-to-severe psoriasis increases the risk of
cardiovascular diseases (Miller et al., 2013) and type two diabetes (Armstrong et al., 2013).
A key component of preventing most chronic diseases is regular physical activity participation
(Haskell et al., 2007). The majority of Americans, however, do not engage in the requisite level of
physical activity needed to benefit their health (Tucker et al., 2011). Of concern, physical activity
participation may be even lower in individuals with psoriasis (Wilson et al., 2012), particularly for
those who perceive their disease as more severe (Wilson, 2013). While literature on specific barriers
to physical activity in psoriasis is fairly sparse, some evidence suggests psoriasis is associated with
increased anxiety and altered body image perceptions that may make it difficult to engage in physical
activity (Wilson et al., 2012). Likewise, psoriasis can influence physiological responses to exercise
(Leibowitz et al., 1991; Sarli et al., 2013) and, in theory, make physical activity less enjoyable.
Unfortunately, it is not clear when the failure to meet physical activity guidelines begins in people
with psoriasis. The adoption of a physically active lifestyle during youth may facilitate physical
activity participation later in life. School-based sport and physical education, in particular, has been
identified as a forum to help youth engage in physical activities while also learning about the health-
enhancing role physical activity plays across the lifespan (Bailey et al., 2009). However, school-based
sport and physical education has been described as an arena where sporting culture, ‘ideal’ bodies, and
gender codes are reinforced (Brown and Evans, 2004; Hickey, 2008; Swain, 2006). A strong focus on
sporting culture and ‘ideal’ bodies during youth physical activity may be problematic for youth who
have alternative bodies (Swain, 2006), such as those with psoriasis. As such, participants with alter-
native or ‘non-ideal’ sporting bodies (such as those with disabilities or chronic diseases) have com-
monly described instances of being bullied by those who are dominant in these spaces (Haegele and
Zhu, 2017; Watson et al., 2015). O’Connor and Graber (2014) suggest that the bullying climate and
culture of school-based sport and physical education may be supported by adult stakeholders (e.g.,
coaches, physical educators) who promote inappropriate and gendered curricular selections and ignore
nonphysical instances of bullying. Thus, barriers to physical activity for those with psoriasis may be
particularly heavy for youth, as fear of judgment and evaluation by peers, teachers, and coaches may
make engaging in physical activity difficult in certain environments (e.g., school and sport-based). To
date, however, no investigations have examined how individuals with psoriasis experience physical
activity during childhood or adolescence and what elements contribute to these experiences.
Recently, research attention has shifted to value the perspectives of individuals with disabilities
and chronic diseases regarding their physical activity experiences (Byrnes and Rickards, 2011;
Haegele and Sutherland, 2015). Understanding thoughts and feelings of those with disabilities and
376 European Physical Education Review 25(2)

chronic diseases in physical activity settings, including school-based sport and physical education,
can lead to a better understanding of how they experience activities and curricula and can help
identify strategies to improve physical activity opportunities (Byrnes and Rickards, 2011; Coates,
2011). As such, contemporary research has explored the embodied experiences of individuals with
various disabilities (e.g., visual impairments, autism spectrum disorder) and chronic diseases (e.g.,
congenital heart disease) in school-based, community-based, and family-centered physical activity
settings (Haegele and Sutherland, 2015; Haegele et al., 2016; Healy et al., 2013; Moola et al.,
2011). The qualitative research paradigm has been favored in this line of inquiry, as it permits
researchers to conduct in-depth explorations of the meaningfulness of physical activity pro-
grammes and provides an opportunity for the participants to describe salient features contributing
to their feelings (Brantlinger et al., 2005; Spencer-Cavaliere and Watkinson, 2010).
Although research on lifestyle habits of individuals with psoriasis is growing (Wilson et al.,
2012), qualitative research on physical activity experiences is scarce. One study from Khoury and
colleagues (2014) used in-depth semi-structured interviews to evaluate factors related to body
image in psoriasis, including physical activity participation, and found that participants’ negative
body image perceptions often contributed to them avoiding physical activity and sports partici-
pation. While this investigation examined a broad range of issues related to body image (i.e.,
sexual function, social networks, etc.), it did not examine physical activity experiences specific to
youth and did not consider school-based sport or physical education. Hence, the extant literature is
limited in understanding experiences of youth with psoriasis in physical activity settings.

Purpose and conceptual framework

The purpose of this study was to examine the meaning that individuals with psoriasis ascribed to
their youth physical activity experiences. This study was carried out retrospectively, where adult
participants were asked to reflect on their experiences as youth, for two primary reasons. First, the
retrospective nature of this study permitted participants to have gained a degree of emotional
distance from events that can be negative or challenging to discuss when being interviewed
(Haegele and Zhu, 2017). Second, utilizing this methodology allowed the research team to
examine participants’ experiences in their entirety as the youth stage of their lives had been
completed. In this article, research focusing on the experiences of individuals with other chronic
health conditions (e.g., congenital heart disease) or disabilities (e.g., visual impairments) is dis-
cussed to highlight experiences that are parallel and conflicting to those described by the parti-
cipants in this study. The intent of this discourse was not to frame psoriasis as a “disability,” but
rather to provide comparisons to other individuals who experience physical activities through
bodies that may be conceived as alternative or ‘non-ideal.’
To explore how participants made sense of their experiences in physical activity settings during
youth, this qualitative inquiry was based on an interpretative phenomenological analysis (IPA)
research approach (Smith et al., 2013). IPA focuses on the complex understanding of experiences
as lived processes which are unique to each person’s embodied and situated relationship with the
world (Smith et al., 2013). Utilizing this framework, researchers explore in detail how participants
make sense of their personal and social worlds from their own embodied experiences (Smith et al.,
2013), and the meaning that particular experiences hold for them (Smith and Osborn, 2008; Smith
et al., 1999). Researchers using IPA must interpret their data with two aims in mind, that is,
describing ‘what it is like’ (i.e., describing what happened during specific events) and ‘what it
means’ (i.e., elucidating specific meaning participants ascribed to events) (Larkin et al., 2006). In
Haegele et al. 377

essence, researchers are charged with examining participants while the participants are exploring
the meaningfulness of their embodied experiences (Smith et al., 2013). A central tenet of IPA,
which held particular importance in this study, is the focus on exploring lived, embodied
experiences. Embodiment suggests that an individual’s experiences of the world are bound with
their experiences with their body (Block and Weatherford, 2013). Examining experiences from an
embodied perspective has become of particular interest for researchers studying the lives of
individuals who interact with the world through bodies that may be considered alternative or ‘non-
ideal’ (Block and Weatherford, 2013; Evans, 2004). This perspective allows researchers to
excavate individuals’ personal accounts of events, as opposed to superficial descriptions of events
(Smith et al., 1999). In the current study, the specific events of interest are participants’ invol-
vement in physical activity as youth. Because of IPA’s alignment with the purpose of this study, it
was deemed an appropriate conceptual framework for this study.

Methods
Participants
A purposive sample of participants was recruited and selected for this study based on several
eligibility criteria, which included: (a) being 18–50 years of age; (b) having psoriasis during
primary and secondary educational experiences; and (c) volunteering to complete a telephone
interview for 60–90 minutes. The choice of this age range aimed to include individuals in a variety
of phases of life, such as the phase in which one establishes work, career, and family, or the phase
in which one has an established life situation, yet has not retired (Bredahl, 2013). A call for
participants was distributed through social media webpages (i.e., Twitter, Reddit) and psoriasis
organization LISTSERVs, and potential participants contacted the research team to express
interest. Those who emailed the research team and met eligibility criteria were invited to partic-
ipate. Participants were enrolled in this study after providing verbal consent to participate. The
authors’ university institutional review board approved study protocols.
Six participants (ages 20–46; four female, two male) completed interviews and were included in
this study. All participants were residents of the United States. The sample was purposely small, as
per IPA recommendations (Smith et al., 2013), in order to “provide sufficient cases for the
development of meaningful points of similarity and difference between participants, but not so
many that one is in danger of being overwhelmed by the amount of data generated” (p.51). Current
and past body surface area involvement was assessed with a previously validated and reliable
question (Dommasch et al., 2010). Participants’ percentage of skin affected by psoriasis ranged
from 1.5% to 75% during youth. A second question regarding subjective life impairment was
adapted from National Health and Nutrition Examination Survey methods (National Center for
Health Statistics, 2006). Table 1 provides demographic and psoriasis severity information about
each participant. Pseudonyms were assigned to participants to protect identity.

Data collection
Interviews. The primary source of data for this study was semi-structured, audio-taped telephone
interviews completed by the first author and subsequently transcribed verbatim by the fourth
author. Telephone interviews were utilized, in lieu of face-to-face interviews, due to the geo-
graphic locations of participants. Although telephone interviews hold several advantages (e.g., cost
effectiveness, reduction of interviewer effects), there are some noteworthy limitations (e.g.,
378 European Physical Education Review 25(2)

Table 1. Demographic and disease severity characteristics of participants.

Current Youth
Race/ psoriasis psoriasis Current Youth
Name Gender Age ethnicity BSA (%)1 BSA (%)1 problem2 problem2 Additional notes

Cecilia Female 33 Caucasian 1.5% 1.5% 8 8 Started at age 14

Hunter Male 46 Caucasian 10% 10% 8 8 Present from 8 to
12 years old, then
again in adulthood
Jane Female 20 Caucasian 5% 8% 3 8 Started at age 12
Lynn Female 23 Caucasian 7% 6% 4 4 –
Phil Male 36 Caucasian 2% 75% 2 10 –
Summer Female 24 Native 20% 15% 7 6 Has gotten considerably
American worse with age

Note: 1Participants self-reported the body surface area (BSA) percentage of their skin affected by psoriasis currently and
during their youth. They were asked “If you had to take the palm of your hand and cover up all of the patches of psoriasis on
your body today (or during youth), how many palms of your hand do you think it would take?” They were asked to include
scalp and back if affected, and to combine small dots if that was the nature of their condition. 2Participants were asked, on a
scale from 1 to 10, how much of a problem psoriasis was in their everyday life (during youth and currently), with 1 meaning
no problem at all and 10 meaning a very large problem.

inability to capture facial gestures and nuances of body language) (Goodwin and Staples, 2005).
Each interview ranged from 45 to 75 minutes and assumed a conversational tone.
Each interview began with an explanation of the study’s purpose and interviewer’s positionality
(Chiseri-Strater, 1996). The interviewer explained that (a) he was employed as a faculty member in a
university health and physical education training programme, and (b) his research focus pertains to the
experiences of individuals with disabilities in physical activity settings. Semi-structured interviews
followed an interview guide, which was modified from a previously constructed guide that was
inspired by the conceptual framework and utilized in research focusing on the meaning that individuals
with visual impairments ascribed to their physical education and sport experiences (Haegele et al.,
2017). Prior to data collection, the guide was modified to fit the purpose of the current study, and
reviewed by the authors and an expert panel (i.e., two colleagues who had previous experience con-
ducting qualitative research in physical activity for individuals with disabilities or chronic conditions)
to ensure content validity. During the interview, the guide was used as a checklist to ensure specific
topics were touched upon, allowing the order and magnitude of topics to vary among participants.
Questions were purposely open-ended and broad to ensure a conversational tone and encourage
participants to talk at length (Smith et al., 2013). Questions focused on participants’ experiences in
physical education, physical activity, and sport during their youth, meaning participants ascribed to
these experiences, and how these experiences impacted them. Example questions include:

 Can you describe what your experiences in youth physical activity were like?
 How meaningful was your participation in these experiences?
 Can you describe why you feel this way about these experiences?

Reflective field notes. Reflexivity refers to the process of critically reflecting on one’s self and noting
personal biases that could affect data interpretation (Walker et al., 2013). During and following
Haegele et al. 379

Step 1 Step 2 Step 3

Data Unit
Emergent Theme
“I would have dandruff
everywhere and kids started calling Bullying Experiences
me ‘Flake’”

Data Unit/ Descriptive Comment

Emergent Theme Identified at
“when it started getting bad a lot of Theme the Case Level
kids started noticing”
Embarrassment “Kids started calling me ‘Flake’”:
[instances of embarrassment Embarrassment, social anxiety, and
related to psoriasis] bullying

Data Unit
Emergent Theme
“When my psoriasis started getting
really bad I detached a lot from my Social Anxiety
peers”

Figure 1. Sample of within-participant analytical step.

each interview, the interviewer recorded reflective field notes. These notes included the inter-
viewer’s reflections on what the participant said, feelings about the conversation, and preliminary
thoughts about possible themes. This process allowed the authors to conceptually return to the
interview during analysis and ensured reflexivity (Walker et al., 2013).

Data analysis
Thematic development was undertaken guided by a four-step IPA analytical process. The objective
of this analytic process was to reveal results in the form of the participants’ embodied experiences
(Smith et al., 2013). First, the lead author became intimate with the data by reading and re-reading
the transcriptions and reflective field notes (Smith et al., 2013). While reading and re-reading data,
the first author conducted a free textual analysis, where units of data of interest, as well as
descriptive and exploratory comments, were recorded (Smith and Osborn, 2008). Second, the first
author reduced each data unit and comment of interest associated with each participant into
constructed themes (Smith et al., 2013). Third, constructed themes were compared within each
participant’s documents to form clusters of related themes, and themes that were unrelated to the
research focus of this project were discarded. The first three steps (see Figure 1) were completed
for each participant’s data independently. After themes were identified at the case level, the final
step was to compare themes across participants to determine which patterns existed through
constant comparison. Recurring themes were shared and discussed among the research team, and
discrepancies were discussed until agreement was reached. Agreed upon themes were summarized,
presented as results, and discussed concurrently.
380 European Physical Education Review 25(2)

Four principles of assessing the quality of qualitative research, presented by Yardley (2000) and
recommended by Smith et al. (2013) for use in IPA studies, were followed to evaluate this study.
Principle one, sensitivity to context, was addressed by the first author explicitly publicizing his
biases to participants by describing his positionality. In addition, sensitivity to context is supported
through abundant numbers of verbatim transcript extracts presented in the results, ensuring the
participants’ voices are clearly represented in the data (Smith et al., 2013). The second principle,
commitment and rigor, was supported through selecting a reasonably homogenous participant
group which aligned with the purpose of the study and by utilizing an interview guide that has been
reviewed and evaluated by an expert panel. Transparency and coherence, the third principle, was
established by explicitly describing participant recruitment, interview, transcription, and analysis
procedures, and accounting for research position, reflexivity, and biases throughout the research
process. Lastly, Yardley (2000) suggests that the impact and importance (the fourth principle) of
research lies in whether the research communicates interesting, important, or useful findings. Thus,
the impact and importance of the work presented here will ultimately be judged by those con-
suming this research.

Results and discussion

Participants shared their experiences during various youth physical activity opportunities,
including school-based (i.e., physical education, interscholastic sport), community-based
(i.e., recreational sport), and family-based activities. Prior to experiencing psoriasis, each parti-
cipant recalled enjoying and regularly engaging in one or more of these areas of physical activity.
When recalling how experiencing psoriasis influenced their physical activity engagement, three
interrelated themes were constructed: (a) “I just stopped signing up”: the impact of physical dis-
comfort; (b) “Kids started calling me ‘Flake’”: embarrassment, social anxiety, and bullying; and
(c) “I felt like he was calling me out”: disclosing psoriasis to stakeholders.

“I just stopped signing up”: The impact of physical discomfort

Research suggests that the physical discomfort commonly associated with psoriasis can make
it difficult to regularly engage in physical activity (Wilson et al., 2012). Among the parti-
cipants in this study, four (Jane, Summer, Hunter, and Phil) specifically described that
physical discomfort impacted their embodied experiences in physical activity. For example,
Hunter explained that:

Well, it became uncomfortable. There was discomfort some days and other days it was painful to do
physical activities, such as getting involved with sports or physical education activities. I had to wear
light clothes with cream underneath and my clothes would stain. My skin would sometimes ooze and
pus. It became awkward and uncomfortable.

For Hunter, who reported experiencing psoriasis on approximately 10% of his body, the pain and
discomfort associated with psoriasis made it challenging for him to continue to engage in physical
activities during youth. He continued by discussing how physical activity impacted his psoriasis,
stating that “the heat [associated with physical activity] would affect the flare-ups and I would have
to do something.” Likewise, Jane also experienced issues with flare-ups as a result of physical
activity. She explained that:
Haegele et al. 381

At times, by doing exercise and being hot and sweaty I think it would almost irritate my psoriasis. I feel
like being tucked in sweaters and being hot outside made it [her skin] very itchy and I feel like it
[psoriasis] spread a little bit.

These experiences are consistent with those from Khoury et al. (2014) in which participants
reported feeling frustrated with physical activity while dealing with psoriasis flare-ups. From a
physiological standpoint, psoriasis lesions may interfere with the normal sweating response to
activity (which serves as a cooling mechanism) and therefore increase thermal strain, making
exercise less enjoyable (Leibowitz et al., 1991).
For many participants, the physical discomfort or pain associated with their psoriasis led them
to discontinue or decrease their engagement in physical activity over time. For example, Phil
recalled how it impacted his engagement in community-based sports:

Oh, I mean it [sport] was great. I was pretty good at it. I still have some trophies and stuff like that.
Then, you have this disease and all of a sudden you stop signing up. I just stopped signing up. So I
pretty much stopped playing on baseball and soccer teams. I was more of a couch potato then, I guess.

Phil went on to describe how he became depressed and overweight as a result of his inactivity, stating
that he “drank a lot of soda, and ate a lot of food” and “graduated high school at about 320 pounds.”
Phil’s embodied experiences demonstrate how physical discomfort caused by psoriasis lesions can
reduce physical activity as well as influence perceived quality of life. Similarly, other participants
described making decisions to disengage from physical activities because of the physical discomfort
or pain associated with psoriasis. For example, Hunter explained that “I was not able to do the
activities in physical education classes for those four years [that I had psoriasis]” and that if he did not
have psoriasis, he “would have been just a normal kid, probably would have been able to do normal
stuff.” Similarly, Summer stated that “if I didn’t have psoriasis, I probably wouldn’t have been so
self-conscious and that would have changed the course of my [physical education] classes at the
time.” Disengagement from physical activity during youth can have a long-term impact. For exam-
ple, Cecilia described the long-term impact of not participating in swimming activities during youth:

I was exempted from swimming [during physical education], and I never learned how to swim as a
result. That is kind of an embarrassment in my life. It has kind of gotten to the point that I am too scared
now to try to learn at this age.

Whereas physical discomfort is perceived to be one minor aspect of motivational cost for students
to attend physical education (Zhu and Chen, 2013), for individuals with psoriasis the associated
physical discomfort seems to be detrimental to their experiences. Similar to Summer, Cecilia’s
embodied experience was highlighted by a missed opportunity to learn a lifelong skill in child-
hood, and its effect on her ability to engage in that activity as an adult. It is known that individuals
with psoriasis tend to engage in less physical activity during adulthood (Wilson et al., 2012), and
instances like these support the assertion that physical activity behavior from childhood can
influence behavior during adulthood (Boreham et al., 2004).

“Kids started calling me ‘Flake’”: Embarrassment, social anxiety, and bullying

Peer interactions and the development of friendships are viewed among youth as significant to feeling
included during physical activity (Seymour et al., 2009; Spencer-Cavaliere and Watkinson, 2010).
382 European Physical Education Review 25(2)

Unfortunately, the participants in this study mostly recalled experiencing embarrassment, social
anxiety, and negative peer interactions during their youth physical activity experiences. For many
participants, these social issues began with feelings of self-consciousness or emotional discomfort
associated with characteristics of psoriasis and its treatment. For example, Hunter explained that:

I became awkward and uncomfortable around my peers and fellow students. The cream was stinky and
it just felt like I didn’t fit in. I felt like a lost star. This added to the discomfort and pain, so I didn’t
really want to participate in sports.

Likewise, Summer recalled that the hardest part of physical activity during youth was “the self-
consciousness of all of it, the skin and my lack of talent, just being awkward. I felt stupid and
uncomfortable for both reasons.” Recollections of self-consciousness and difference, such as those
described by Hunter and Summer, were omnipresent among all participants. These findings are in
alignment with those from Koo (1996), who reported that of several daily activities (e.g., being
interviewed, courtship, giving a presentation), that it was going to a pool, beach, or gym that
caused individuals with psoriasis the most anxiety.
Experiences of self-consciousness and difference have emerged in research focusing on youth
with disabilities and other chronic health conditions (Haegele et al., 2017; Healy et al., 2013), as
well as those with perceived differences in appearance, body size, and personal attire (O’Connor
and Graber, 2014), and have been identified to contribute to the development of negative feelings
toward physical activity engagement (Haegele and Sutherland, 2015; O’Connor and Graber, 2014).
As such, it is not surprising that several participants suggested that feelings of being different, in
addition to physical discomfort associated with lesions, influenced the way they felt about physical
activity participation. For example, Phil explained:

You know even though it hurt and things like that, I can suck up skin pain. I can deal with the itches and
the pain pretty well. One thing I could not deal with very well was the embarrassment. I mean in the
summer I can go out on the dock or something like that, or I can go out and play football but I would be
wearing long sleeved shirts and jeans and shoes and a hat because I had scalp psoriasis. The embarrass-
ment was the most impactful part.

As with Phil, other participants described hiding their psoriasis during physical activity, including
wearing long pants and sweaters (Cecilia, Jane, Hunter) or always having hair in a ponytail to hide
scalp psoriasis (Lynn), as a way to avoid feelings of difference or embarrassment among peers.
This strategy of hiding psoriasis was also well-described by Khoury et al. (2014), with one example
coming from a participant that reported, “I often wear too much warm clothing . . . I get encapsu-
lated in my ointment and warm polyester . . . I feel a bit handicapped when I have to wear leggings
and cardigans on a warm summer day” (p.3).
In some instances, however, covering up could have been dangerous for participants. For example,
Jane recalled her experience trying out for an interscholastic soccer team:

It was really hot, I think it was the beginning of the school year so it was September or August and I was
wearing long black jogging pants and a black sweater. We had to run a mile that was timed. I felt like,
“oh my gosh, I am going to pass out if I don’t take this sweater off.” But, I couldn’t because I didn’t
have any friends and I didn’t feel comfortable. I thought “No, I can’t take it off.” I ended up coming in
last place because I thought I was going to pass out from the heat. I thought “Man, if I didn’t have
Haegele et al. 383

psoriasis I probably could have been up there in front and now I am like this lame person who is in the
back who looks fat in sweat pants and a giant sweater.”

For Jane, avoiding feelings of difference or embarrassment among peers outweighed the potential
harm she perceived associated with wearing clothes to cover her skin lesions during physical activity.
An additional concern expressed among participants was that instances of negative peer inter-
actions, such as bullying, were common. Bullying, a potentially traumatic experience (Ratcliff et al.,
2016) that has been commonly described among individuals with disabilities and chronic diseases
during sport activities (Dane-Staples et al., 2013; Fitzgerald, 2005), in the form of verbal teasing was
most common among participants. For example, Lynn described instances where peers stated “Ew,
I don’t want to be around you right now” and “Oh, I don’t want to catch anything from you.” Summer
described times when “mean people that mock me in those classes, which made those really
uncomfortable times,” and Phil experienced peers “calling me ‘Flake’” or said that his lesions
“looked like cigarette burns.” For Phil and Jane, teasing was also common among family members.
Phil described when his “family went to the beach, my cousins would make fun of me too and, you
know, I wouldn’t go to the beach anymore because I didn’t want to be made fun of.” Likewise, Jane
recalled that “my mom used to make jokes that I was like a leper.” Research has demonstrated that
low social acceptance as a result of the dominance of idealized physical appearances can lead to high
levels of bullying and social isolation, particularly in school-based sport and physical education
settings (Maher, 2016). Because individuals with psoriasis tend to fit the typical characteristics of
those who are victims of bullying (e.g., anxious, embarrassed, self-conscious) (Kueny and Zirkel,
2012) and have bodies that may be considered ‘non-ideal’ or alternative sporting bodies (Maher,
2016; Watson et al., 2015) it is not surprising that these types of negative peer interactions were
common for them during physical activities. Our findings parallel previously reported experiences
from individuals with psoriasis experiencing bullying in physical activity settings (Khoury et al.,
2014), but also provide novel evidence that these experiences occur in youth. While bullying
research specific to psoriasis is limited, one study found that 27% of individuals with psoriasis from
outpatient and inpatient facilities reported that strangers made rude or insensitive remarks about their
appearance over the past month (Gupta and Gupta, 1995).

“I felt like he was calling me out”: Disclosing psoriasis to stakeholders

For youth with chronic diseases or hidden disabilities, a strong concern is whether or not to disclose their
condition to stakeholders (e.g., physical education teachers, coaches; Haegele and Sutherland, 2015).
For example, previous research focusing on individuals with congenital heart disease suggests that youth
perceive that disclosure could lead to exclusion and marginalization in physical activity environments
(Moola et al., 2011). Conversely, other participants viewed disclosure as a precautionary measure to
ensuring health and safety (i.e., avoid overexertion) (Moola et al., 2011). Similarly, the participants in the
current study had varying opinions of whether or not to disclose psoriasis to stakeholders.
A number of positives attributes were reported among participants in regard to disclosing their
condition to stakeholders. For example, Jane discussed how her experience with a physical edu-
cation teacher changed after she discussed psoriasis with her:

I felt like she understood and I didn’t really need to explain why I was wearing jogging pants in 100
degree weather anymore. You know, after that I think she just kind of figured it out and didn’t treat me
any differently than other kids.
384 European Physical Education Review 25(2)

This view was shared among several participants, who agreed that making the decision to approach
stakeholders and disclose information about psoriasis could have a positive outcome. However,
this was not the case when stakeholders initiated the conversation. For example, Lynn explained
that:

He [coach] noticed it and it wasn’t going away so he kind of asked me about it. It wasn’t a big deal, but
it was a little awkward because it wasn’t just the two of us. It was him, I, and one other peer. I figure he
just meant it in an innocent, curious way but it was still like “okay, now I have to explain this again in
front of another person.” At the time, it was a little awkward, and I would have him rather not asked.

Lynn continued by adding that these instances can become increasingly uncomfortable when
people “come back to you with some sort of home remedy to fix psoriasis.” Likewise, parti-
cipants initiating the disclosure did not always turn out well for them. For example, Summer
explained that even though she “had gone to him [physical education teacher] before class and
tried to explain it [psoriasis], he didn’t really care.” She continued “so, I kind of felt like
I wasn’t even being listened to at all.” Unfortunately, instances like these are not isolated to
youth with psoriasis, and previous research has found evidence of youth with disabilities and
chronic disease providing suggestions for accommodations to stakeholders and being ignored
(Bredahl, 2013).
Although several participants subscribed to the strategy of explicitly explaining psoriasis to
stakeholders, others still suggested that “it was just easier not to explain anything” (Summer) or
“just not mentioning it, or making a big deal out of it, was really nice for me” (Jane). While this
strategy left students attempting to hide visual skin lesions, this type of discomfort was thought to
be less distressing than potential negative social experiences (Moola et al., 2011). However,
students who did not explicitly explain their condition were at risk for other consequences. For
example, three participants (Jane, Cecilia, and Summer) described instances where they were
“called out” by their coach or physical education teacher for not dressing appropriately during
class. For example, Summer explained that:

In middle school, we all had to sit on numbers [painted] on the black top [during physical education]
and he [physical education teacher] would ask you to stand up and explain your reason [for not wearing
the physical education uniform] in front of everybody. There was no way to go to him before the
session started. I would have to say something like “I didn’t feel like it” or something. This did not
make our relationship strong.

Jane had a similar experience during her Research Officers’ Training Corps experience, where she
stated:

I felt like he was calling me out and I was embarrassed. I thought “you didn’t need to say anything in
front of 30 kids.” Especially when I was the sergeant major and I was kind of supposed to be in charge
of them [peers]. I felt a little undermined.

In these instances, the stakeholders unknowingly perpetuated feelings of self-consciousness and

embarrassment among the participants by highlighting their difference among peers. These embo-
died experiences demonstrate the interrelated nature of the themes that were constructed from
participant narratives.
Haegele et al. 385

Limitations and conclusions

Several limitations were evident in this study. This was a retrospective study where adult-aged
participants reflected on their experiences as youth. Although some may question the trust-
worthiness of recall studies (Bredahl, 2013), this approach was utilized to provide a degree of
emotional distance so that participants may have been more comfortable discussing potentially
negative or challenging past events (Melrose, 2002). Furthermore, although there are several
advantages to telephone interviews, limitations are present. For example, limitations to the intimacy
of interviews and the inability of the interviewer to capture non-verbal nuances and facial gestures
have been noted (Goodwin and Staples, 2005). Finally, psoriasis diagnoses were self-reported, and
the accuracy of psoriasis self-reports is not completely known. However, self-report diagnoses of
other chronic diseases are fairly accurate (Martin et al., 2000). In addition, these individuals had
their skin disease for numerous years prior to the study and presumably they had seen health
practitioners during that time, making it less likely they would erroneously label their disease.
Practitioners aiming to increase physical activity engagement among youth with psoriasis can
develop strategies that uniquely address the needs identified by this investigation. Two areas of
particular concern that should be noted by stakeholders (e.g., coaches, physical educators) are
considerations regarding exercise contexts and communication about psoriasis. First, the partici-
pants described instances of physical discomfort related to flare-ups that were particularly pre-
valent in hot and humid environments. This is not surprising, as individuals with psoriasis are
considered at risk for heat intolerance because of a reduced ability to dissipate heat during
exposure to exercise (Leibowitz et al., 1991). Furthermore, several participants described instances
of overheating while wearing extra clothes during physical education activities to avoid social
embarrassment. Stakeholders should consider these expressed concerns when selecting exercise
contexts for physical activities. When available, stakeholders should consider holding activities or
practices in air-conditioned and/or cool environments that would decrease the risk of overheating
or excessive sweat during exercise. Second, the participants in this study described scenarios of
interactions with their physical educators that were considered positive as well as challenging.
Stakeholders who teach youth with psoriasis in physical activity contexts should consider adopting
some of the behaviors described as favorable among the participants. That is, stakeholders should
be receptive when students with psoriasis want to discuss their unique needs and put effort into
making accommodations that are voiced. However, they should avoid attempts to provide home
remedies to help fix students’ psoriasis and must avoid treating students with psoriasis differently
than their classmates in ways that highlight their condition. It should be noted that coming to know
the experiences of individuals with psoriasis in physical activity environments alone will not likely
improve the responsiveness of stakeholders. Rather, attendant shifts in practices and changes in the
attitudes of people who identify with dominant sport and physical education practices is also
necessary to see dramatic improvements.
The purpose of this retrospective study was to examine the meaning that individuals with psoriasis
ascribed to their youth physical activity experiences. This is the first study, to the knowledge of the
authors, to explore the youth physical activity experiences of individuals with psoriasis utilizing a
qualitative approach. Using an IPA approach, three interrelated themes were excavated that depict
central feelings, experiences, and reflections of the participants’ youth physical activity experiences.
The three constructed themes, “I just stopped signing up”: the impact of physical discomfort; “Kids
started calling me ‘Flake’”: peer interactions during activity; and “I felt like he was calling me out”:
disclosing psoriasis to stakeholders, provide unique insight into the embodied experiences of those
386 European Physical Education Review 25(2)

experiencing psoriasis, and fill a previous gap in the extant literature. Similarly, these findings
highlight the need for more research that addresses physical inactivity in youth with psoriasis. Given
that experiences as youth can shape lifelong physical activity behaviors, it is critical that more work
is undertaken to understand and address the three aforementioned interrelated themes that were
constructed from youth physical activity experiences.

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.

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Author biographies
Justin A Haegele, PhD, CAPE, is an Assistant Professor with the Department of Human Movement Sciences
at Old Dominion University in Norfolk, Virginia (USA).

Patrick B Wilson, PhD, RD, is an Assistant Professor with the Department of Human Movement Sciences at
Old Dominion University in Norfolk, Virginia (USA).

Xihe Zhu, PhD, is an Associate Professor with the Department of Human Movement Sciences at Old
Dominion University in Norfolk, Virginia (USA).

T Nicole Kirk, M.Ed, CAPE, is a Doctoral Student with the Department of Human Movement Sciences at
Old Dominion University in Norfolk, Virginia (USA).