Original Article

Peer-Recommended Coping
Strategies for Individuals Living
With Alopecia Areata
Garrett E. Huck1 , Dana Brickham2, and Shaina Shelton3
This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
This document is copyrighted by the American Psychological Association or one of its allied publishers.

1
Department of Rehabilitation Psychology and Special Education, University of Wisconsin-Madison, Madison, WI, USA
2
Department of Rehabilitation Counseling, Western Washington University, DC, USA
3
Pennsylvania Office of Vocational Rehabilitation, PA, USA

Abstract: Background: Alopecia areata (AA) is a chronic immunological disease characterized by hair loss on the scalp and/or body. Medical
treatments are frequently ineffective, leaving many individuals with little hope for hair regrowth. Despite high rates of psychological turmoil
experienced by people living with AA, little consideration is given to the unique impact of the condition and the potential benefits of coping
approaches. Aims: The purpose of this study was to establish a foundation of strategies for coping with AA as recommended by people
currently living with the diagnosis. Method: An international sample of 190 participants shared perspectives on types of strategies they believe
would be useful for living with AA. A qualitative content analysis approach was used to code and group participant responses. Results:
Frequently identified strategies included various forms of social support and strategies for social navigation, perspective-shifting, cosmetic
strategies and procedures, and accessing medical and psychological interventions. Limitations: Participants were limited to a largely female
convenience sample. The findings were not associated with real-life outcomes, only anecdotal recommendations. Conclusion: The findings of
the present study further support prior research yet offer unique perspectives as well.

Keywords: alopecia areata, coping, mental health, dermatology, psychosocial aspects of chronic illness

Alopecia areata (AA) is a chronic immunological condition might adjust and live a high QOL while experiencing
characterized by hair loss on the scalp and/or body. The ongoing AA symptoms.
effectiveness of medical treatments for AA is inconsistent
and unpredictable (Strazzulla et al., 2018), and in many
Coping With Alopecia Areata
instances, insurers are unwilling to reimburse for the cost
of treatments and psychosocial coping modalities (e.g., The existing literature suggests that effective coping strate-
Ezemma et al., 2023; Kullab et al., 2023) as AA has tradi- gies may improve QOL among people with AA. However, a
tionally been recognized as a medically benign, cosmetic substantial body of literature on this topic does not yet exist
condition. However, an “it’s just hair” perspective fails to and few evidence-based recommendations for coping with
consider the elevated levels of suffering and significant AA have been put forth. As there is a call for dermatological
impact on quality of life (QOL) reported by many living and mental health professionals to consider the psycholog-
with AA (Rencz et al., 2016). The existing research has ical needs of people with AA (e.g., Macbeth et al., 2017), a
shown that people with AA are at a significantly high risk variety of recommendations and resources must be at their
of experiencing stigma (Schielein et al., 2020) and develop- disposal. In turn, research must explore how people with
ing complex psychological problems, including self-esteem AA are currently coping, as well as what is effective, so that
issues, anxiety, depression, and an increased risk of suici- those supporting people with AA can be better prepared to
dality (e.g., Davey et al., 2019; Layegh et al., 2010; Hunt effectively do so. As the experience of AA is thought to be
& McHale, 2005; van Dalen et al., 2022). For instance, highly personal and subjective (Davey et al., 2019; Kal-
Lee et al. (2019) found that among people living with AA, abokes, 2011), research has suggested that it is important
27.1% reported the presence of anxiety and 18.9% reported to understand how different individuals cope with their hair
a diagnosis of depression. Despite high rates of psychiatric loss. It is believed that individual coping may be as signifi-
comorbidity, existing treatments tend to focus solely on hair cant as the extent of the hair loss itself in determining the
regrowth, with little consideration for how individuals ultimate impact on QOL (Schmidt et al., 2001).

Ó 2024 Hogrefe Publishing European Journal of Health Psychology (2024), 31(2), 45–55
https://doi.org/10.1027/2512-8442/a000141
 46 G. E. Huck et al., Peer-Recommended Coping Strategies for Individuals Living With Alopecia Areata

Although the majority of the literature on coping has group data. This study offered valuable insights into how
focused on the merits of hairpiece use among individuals people with AA report coping and suggested that coping
with AA (e.g., Aldhouse et al., 2020; Montgomery et al., competence training would likely be advantageous for
2017; Wiggins et al., 2014), some studies have aimed to managing the negative emotional states and insecurities
understand other factors as well. Psychological factors commonly experienced. While meaningful, this study did
related to coping are one area of interest. Welsh and Guy lack diversity and depth in its sample population, somewhat
(2009) suggested that people with AA may experience a limiting the generalizability of its findings and warranting
grieving process where coping strategies evolve and clear further exploration.
differences between gender-specific adaptations exist.
Burns et al. (2020) also considered life span, suggesting
that cumulative life course impairment can be influenced Purposes of Study
by coping style. Barkauskaite and Serapinas (2020) dis- The present study aimed to strengthen the empirical foun-
This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.

cussed the therapeutic implications of psychological states dation of information on coping with AA through an explo-
This document is copyrighted by the American Psychological Association or one of its allied publishers.

experienced by people with AA, calling for greater consider- ration of coping styles that people living with AA would
ation of the loss of perceived self and grieving processes. recommend to other individuals experiencing the onset of
Matzer et al. (2011) found evidence that people with AA AA. As the evidence base is still evolving, it was deemed
are more prone to maladaptive coping strategies than the appropriate to converse with individuals with a wealth of
general population. Most recently, Huck et al. (2021) expertise on the topic – people living with AA, who in their
applied the PERMA framework (Seligman, 2011) to evalu- voice, may offer important recommendations. This study
ate associations between the PERMA elements (i.e., posi- builds on existing literature by (a) offering a qualitative
tive emotions, engagement, relationships, meaning, and analysis of coping benefitting from a larger sample size.
achievement) and AA-related QOL, finding that the model Additionally, this study (b) offers unique perspectives on
held promise for understanding and supporting individuals. coping, in that this research sought to understand what
Research related to coping strategies and interventions, individuals would recommend to others experiencing onset,
while sparse, is gaining momentum in the field. Respon- while (c) also considering recommendations offered by
dents to an online questionnaire by Davey et al. (2019) sug- specific subgroups of individuals. It is widely believed that
gest that peer support and psychological intervention are peer support is effective for gaining insight into one’s health
valued sources of support. A 2019 analysis by Iliffe and conditions, particularly through discussions on coping
Thompson found that online social media-based support strategies (Thompson et al., 2022). Although each experi-
groups may be valuable for living with AA. Rajoo et al. ence is unique, through an exploration of what coping
(2019) found that physical activity (PA) participation was strategies people currently living with AA would recom-
associated with improved mental health among people with mend, others might gain insight and preparedness to satis-
AA. These findings were expanded upon by a 2020 study in factorily manage their own experience.
which Rajoo et al. evaluated facilitators and barriers to PA The specific research questions addressed are as follows:
at different stages of individual adjustment. Zucchelli et al.
(2022) evaluated the appeal and efficacy of an acceptance Research Question 1 (RQ1): What coping strategies do
and commitment therapy-based mobile app amongst indi- people living with AA most frequently recommend to
viduals with cosmetic health conditions, suggesting value others experiencing onset?
for some individuals. An earlier study by Willemsen et al. Research Question 2 (RQ2): What subgroup differ-
(2011) supported the use of hypnotherapy as well. ences are observed amongst participant recom-
Research on coping among people with AA has largely mendations?
been limited to a few studies on psychological states, cop-
ing, and intervention efficacy. However, Matzer et al.
(2011) attempted to more broadly understand coping
Methods
among this group, completing a qualitative analysis of cop-
ing strategies reported by 45 people living with AA. Five
Researchers
themes emerged, identified as treatments (e.g., medical
and psychological intervention), social coping (e.g., social The researchers consisted of two university faculty
support and how to navigate social situations), active coping researchers and a graduate assistant (GA). The faculty
(e.g., actions taken to reduce stress), cognitive coping (e.g., researchers have broad experiences in qualitative research
perspective-changing, information seeking), and passive and expertise related to the psychosocial aspects of chronic
coping (e.g., avoidance, denial, and/or withdrawal). Within illness. The GA also holds training and experience related
these themes, 24 more specific subcategories were used to to the intricacies of life with chronic illness and completed

European Journal of Health Psychology (2024), 31(2), 45–55 Ó 2024 Hogrefe Publishing
 G. E. Huck et al., Peer-Recommended Coping Strategies for Individuals Living With Alopecia Areata 47

training focused on qualitative methodology. Two research- coping strategies that you would recommend to
ers identified as female, one as male, and all/each as Cau- them? Coping strategies may be medical, psycholog-
casian. Ages ranged from 30 to 45 years. Each was based at ical, social, etc.; Whatever you believe would be
a baccalaureate and graduate degree-granting university in important for us to recommend to others living with
the USA. alopecia areata!”

Participants were provided with a text entry box to enter

Recruitment
responses as well in addition to a second box where any
Participants self-reported currently living with AA, being at additional information could be shared at the participant’s
least 18 years of age, and being able to communicate in discretion.
English. Recruitment occurred through announcements
via national and international AA advocacy organizations
Data Preparation and Coding
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and through social media-based AA discussion groups. Par-

This document is copyrighted by the American Psychological Association or one of its allied publishers.

ticipation was voluntary and implied consent was given For the current study, a directed qualitative content analysis
when participating. Interested participants could enter a approach was deemed appropriate. This methodology is
drawing for a US $10 gift card. All recruitment procedures suitable when “analysis starts with a theory or relevant
were approved by the primary investigator’s institutional research findings as guidance for initial codes” (Hsieh &
review board in addition to participating agencies and Shannon, 2005, p. 1277). In the current research, coping
groups. themes described by Matzer et al. (2011) were used to
establish initial themes and subcategories. The Matzer
Participants et al. findings were a valuable starting point due to their
findings’ face validity and well-defined themes and subcat-
One hundred ninety individuals elected to participate. One egories. In the present study, as the researchers completed
hundred sixty-eight participants (88.4%) identified as data analysis, relevant data points were placed into the
female. The age range was 18–75, with an average of broader themes and grouped into subcategories as appro-
40.9 years. 76.3% identified as Caucasian, followed by Afri- priate. As the research progressed, it became apparent
can/Black (5.3%), Asian (4.8%), Hispanic (3.7%), Arab that the findings were largely consistent with the themes
(0.5%), and Native American (0.5%); 8.5% reported and subcategories in Matzer et al.. However, additional
“other”. One hundred forty-four (75.7%) participants were subcategories naturally arose from the current data.
from the USA, 19 (10%) from Australia, 11 (5.7%) from Furthermore, unlike in the Matzer et al. study, a “passive
the UK, 8 (4.2%) from Canada, and 8 (4.2%) reported coping” theme was not included in this research, as only
another nationality. 95.1% indicated a high school educa- one participant’s response aligned with the definition of
tion or greater and 88.8% reported a current occupation. passive coping.
57.9% stated that they were currently in a relationship. A faculty researcher and GA acted as the primary coders.
Participants’ average onset age was 24.7 years, with an The second faculty researcher acted as an auditor. Hsieh
average of 15.4 years since onset. 16.5% of the participants and Shannon (2005) state that an optional audit trail can
indicated no body hair loss, 11.2% indicated 10% or less be utilized in content analysis. To ensure accuracy and min-
lost, 14.4% a loss of 11–60%, 23.4% a loss of 61–90%, imize bias, one research team member serving as an audi-
and 28.7% reported a loss of 91–100%. 5% of the partici- tor was deemed advantageous.
pants indicated no scalp hair loss, 8.5% indicated a loss of Data analysis occurred over multiple weeks. In the first
10% or less, 19.1% a loss of 11–60%, 21.8% a loss of 61– step, each coder independently coded data from the first
90%, and 45.7% a loss of 91–100%. 50 participants. Upon completion, the coders reconvened
to review data placement, reach consensus, and discuss
the introduction of more specific subcategories. A total of
Measures 13 subcategories were agreed upon. It was also determined
that more general subcategories would be used in the
Participants completed a brief demographic questionnaire
“treatments” theme than those in the Matzer et al. (2011)
containing inquiries related to one’s background character-
study, as many responses within this theme were rather
istics and experience with AA. Specific to the objectives of
vague or non-specific. Upon completion of this meeting,
this research, each participant was also asked:
the coders sent their findings to the auditor. Following audi-
“If you had a friend or loved one recently diagnosed tor feedback on redundancy/overlap in subcategories, more
with a form of alopecia areata, what are the top 2–3 specific subcategories, and the appropriate placement

Ó 2024 Hogrefe Publishing European Journal of Health Psychology (2024), 31(2), 45–55
 48 G. E. Huck et al., Peer-Recommended Coping Strategies for Individuals Living With Alopecia Areata

of questionable data points, the coders independently Table 1. Participant response themes and subcategories (n = 190)
reviewed the feedback and then met to reach a consensus No. of
for moving forward. At this time, subcategories were better Major themes and subcategories times referenced
defined, one subcategory was added, and questionable data Active coping
points were placed into mutually agreed-upon subcate- Cosmetic procedures 40
gories. Each coder then coded the remaining 140 partici- Stress management techniques 19
pant data points, agreeing to better define subcategories Emotional expression* 5
and also consider any other new subcategories arising. Humor 4
The coders then met once again with the auditor to discuss Cognitive coping
the findings and reach a consensus about the remaining Relativizing AA 36
data. Acceptance 35
Seeking accurate information 20
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Confidence* 13
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Hope and optimism* 13

Results Avoiding false hopes* 12
Finding new meaning* 9
Four broad themes grouped participant responses. Within Spirituality* 5
these themes, 12 subcategories originating with the Matzer Treatment
et al. (2011) study were used, in addition to 6 unique subcat- Medical treatments 47
egories that emerged (see Table 1). Psychological treatment 33
As QOL and adaptation among different subpopula- Alternative treatments 11
tions may vary, four subgroup analyses (e.g., gender, years Social coping
since onset, percentage of body hair loss, and percentage of Peer support 59
scalp hair loss) were also completed to identify any mean- Social support 43
ingful differences between subpopulations of people with Sending open messages 28
AA. Subgroup analyses were inspired by prior research Note. Asterisk denotes subcategory not included in Matzer et al. (2011)
evaluating group differences in QOL among people with study.
AA (e.g., Barkauskaite & Serapinas, 2020; Gonul et al.,
2018). Stress Management Techniques
Nineteen participants referenced stress management tech-
niques. Seven individuals mentioned forms of physical
activity (e.g., walking, yoga). Six participants suggested that
Active Coping meditation and mindfulness were important. Lastly, 13 par-
Active coping refers to actions taken to best navigate a ticipants made general statements such as “staying busy,”
stressful situation through targeted behavior, embracing getting a pet and spending time in nature.
responsibility, and accessing resources (American Psycho-
Emotional Expression
logical Association [APA], 2022). Four subcategories were
Five participants highlighted the value of expressing one’s
used to group participant responses in this theme, one
feelings about life with AA. This subcategory was unique
unique to the present study.
to the present study. One participant stated, “Express
[your] emotions. Express the loss you feel and talk about
Cosmetic Procedures how it may impact [your] sense of self/identity.” Another
This subcategory was used to group references to strategies participant stated, “know that its ok to be mad or sad.”
or procedures used to modify one’s appearance. Thirty-
three participants stated that wig or hairpiece use is benefi- Humor
cial. One participant stated, “Having a good wig is super Four participants suggested that using humor is valuable.
important. When you have a good wig, it helps to be in pub- One participant stated, “be able to laugh about it.” Another
lic”. Six participants suggested that makeup is useful, as suggested, “Making jokes about it can help too, ew. . . I
well as eyebrow tattoos, and hats or head coverings (three found a hair in my food, it’s probably not mine.”
mentions each). Three other participants stated that simply
shaving one’s head can be useful. One participant stated,
Cognitive Coping
“If the hair loss is more severe, I recommend shaving their
hair off, because it gives you the control back through an This theme was used in group responses mentioning some
uncontrollable situation.” type of perspective holding thought to ease stress related to

European Journal of Health Psychology (2024), 31(2), 45–55 Ó 2024 Hogrefe Publishing
 G. E. Huck et al., Peer-Recommended Coping Strategies for Individuals Living With Alopecia Areata 49

AA. Within this theme, eight subcategories were used, five Representative quotes included “Avoid false promises from
of which were unique to the present study. products that don’t work” and “Don’t put too much hope
into medical treatments.”
Relativizing Alopecia Areata
This subcategory included 36 participant responses refer- Finding New Meaning
encing the value of putting one’s experience into perspec- This subcategory grouped nine participant responses refer-
tive, such as recognizing “it could be worse,” and that encing value in other aspects of life. One participant stated,
“one is not alone.” One participant stated, “Be you! You “Find other things in life that are valuable to yourself, such
are not your hair, no matter what society tells you.” Another as work or doing good things for others. Find other ways to
individual said, “Remember that you could have cancer or boost one’s self-esteem”. Another participant stated, “Find
be diagnosed with a life-threatening condition. It’s just hair! self-value and esteem in things other than looks.”
A person is so much more than their hair.”
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Spirituality
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Acceptance Five participants suggested finding solace in one’s spiritual

This subcategory grouped 35 responses referencing the beliefs. One participant stated, “God has a plan for you that
general importance of accepting one’s life with AA. One he is going to make the best!”. An additional participant sta-
participant stated, “Just embrace it, enjoy life. Realize that ted, “I would share with them that by the blood of Jesus we
this is real, it is happening and it’s something we will have can be healed from all disease and share with them the
to live with forever. Once I finally accepted that, my atti- hope that is found in him.”
tude changed.” Multiple participants made comments
about the importance of accepting the realities of AA,
including “Be prepared to lose a massive amount of hair.” Treatments
The treatment theme grouped participant responses refer-
Seeking Accurate Information
encing medical, psychological, or alternative interventions.
Twenty participants noted the importance of accurate infor-
Within this theme, three specific subcategories were used.
mation to gain an accurate understanding of AA. One par-
ticipant stated, “Research all you can to fully understand
Medical Treatments
the disease. I’ve lived with it my most of my life and it
The medical treatments subcategory contained 47 partici-
has become second nature, but for someone new to it, it
pant references to medical consultation or intervention.
can be very scary.” A second participant suggested staying
Of these references, 35 were general mentions of seeking
abreast of medical advances in treatment. Several partici-
consultation or treatment. One participant stated,
pants specifically mentioned “seeking information from
good sources,” such as national advocacy organizations.
“Seek help. Don’t be afraid to see the doctor. There
are treatments available and one of them might work
Confidence
for you. If you feel dismissed, like you are not being
This subcategory contained general statements about hav-
taken seriously, go get a second opinion. A third if
ing confidence and self-esteem. Thirteen participants made
necessary. Don’t stop trying until you find a medical
related statements, including “Be proud of the person you
professional who will listen to your concerns and
have become in spite of a change in appearance” and “Love
actively try to help.”
yourself.”

Hope and Optimism

Psychological Treatment
Thirteen participants referenced the importance of main-
The psychological treatments subcategory was used to
taining hope and optimism throughout one’s experiences,
group 33 references to psychological support, 31 partici-
including statements such as “Take it day by day and
pants specifically mentioned psychotherapeutic support.
remember it might grow back.” One participant noted,
For example, one participant stated, “Get counseling early
“Also, just because treatment doesn’t work for one person,
on.” Two additional participants mentioned psychiatric
it doesn’t mean it won’t work for you. Everyone’s triggers
medications.
and experiences with it is different.”

Avoiding False Hopes Alternative Treatments

Twelve participants suggested avoiding false hopes about This subcategory contained eleven references to other types
AA. These included references to thoughts and behaviors of strategies targeting AA. Seven participants highlighted
related to one’s hopes about treatments and prognosis. the importance of a healthy diet. One participant stated,

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 50 G. E. Huck et al., Peer-Recommended Coping Strategies for Individuals Living With Alopecia Areata

“Take steps to change [your] lifestyle and diet in order to Table 2. Subgroup analysis: Gender
support your immune system to heal.” Five additional Number of
responses included “plenty of rest,” “natural regrowth Subgroups, subcategories, and major themes times referenced
products,” boosting one’s immune system, and probiotic Female Gender (n = 168)
supplementation. Peer support (Social Coping) 51
Medical treatments (Treatment) 46
Social support (Social Coping) 39
Social Coping Cosmetic procedures (Active Coping) 38
The social coping theme was used to group participant ref- Psychological treatment (Treatment) 30
erences to social support or actions taken in social contexts. Relativizing AA (Cognitive Coping) 30
Three subcategories were used within this theme. Male Gender (n = 22)
Peer support (Social Coping) 8
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Peer Support Acceptance (Cognitive Coping) 6

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The largest subcategory in this research was peer support, Relativizing AA (Cognitive Coping) 6
used to group 59 participant references to the value of con- Sending open messages (Social Coping) 6
necting with others living with AA. Representative Hope and optimism (Cognitive Coping) 4
responses included, “Talk to people that have the diagnosis. Social support (Social Coping) 4
I’m from Denmark, and I have found it good to meet peo-
ple in the groups on Facebook, this gave me comfort.” Two
participants specifically mentioned the value of connecting support, differences emerged in subsequent recommenda-
with national advocacy organizations. An additional partic- tions. Among females, strategies more focused on treat-
ipant stated, “Share your story to help others.” ments were observed, as were cosmetic procedures. In
contrast, responses from males focused more on forms of
Social Support social and cognitive coping. Aside from peer support, rela-
This subcategory grouped 43 participant references to gen- tivizing AA and social support were the only other two
eral social support from friends, family, and colleagues. strategies mentioned across both groups (see Table 2).
Representative statements included, “Talk about your feel-
ings about AA with loved ones and let them know what Years Since Onset
makes you comfortable or uncomfortable,” and “Find a For this analysis, responses were grouped into three subcat-
friend or family member that will let you cry about it with egories with consideration for different psychological states
them because we almost all do at one point.” and degrees of acceptance occurring across groups. Peer
support was a frequently recommended strategy across
Sending Open Messages groups, although for individuals living with AA for 1–3 years,
Twenty-eight participants referenced sending open mes- psychological treatment emerged as most frequently rec-
sages, defined as statements related to being open about ommended. Similar forms of cognitive and social coping
AA, showing one’s baldness in public, and openly talking were commonly mentioned within each group, although
with other individuals. One participant stated, “Come up treatments and cosmetic procedures were more commonly
with a friendly response to people asking if you have cancer. mentioned by individuals living with AA longer. Social sup-
Do you simply say thank you, correct them, educate them, port was the only additional strategy mentioned across all
or ignore them? Happens all the time.” Another participant groups (see Table 3).
stated, “Get out there without a wig or hat and see how
people react, they are mostly accepting. Bring awareness.” Percentage of Body Hair Loss
For this analysis, individuals were grouped into four cate-
gories based on the percentage of loss. Peer support and
Subgroup Analyses social support were mentioned by each group. Additionally,
The following four subgroup analyses were also completed. medical and psychological treatment and cosmetic proce-
The five most frequently cited coping strategies are noted dures were mentioned across groups (see Table 4).
and rank order. In the instance where a tie occurred (i.e.,
the female gender subgroup), the six most frequently cited Percentage of Scalp Hair Loss
were included. Consistent with body hair loss, participants were grouped
based on the percentage of hair loss. Peer support was
Gender the sole strategy mentioned across each group, although
When analyzed by gender, differences did emerge. three groups noted medical treatments, cosmetic proce-
Although the most referenced for both genders was peer dures, and social support. It was also observed that forms

European Journal of Health Psychology (2024), 31(2), 45–55 Ó 2024 Hogrefe Publishing
 G. E. Huck et al., Peer-Recommended Coping Strategies for Individuals Living With Alopecia Areata 51

Table 3. Subgroup analysis: Years since onset (n = 190) Table 5. Subgroup analysis: Percentage of scalp hair loss (n = 179)
Number of Number of
Subgroups, subcategories, and major themes times referenced Subgroups, subcategories, and major themes times referenced
Years since onset (1 year or less; n = 28) 10% or less lost (n = 16)
Peer support (Social Coping) 9 Stress management (Active Coping) 6
Relativizing AA (Cognitive Coping) 9 Peer support (Social Coping) 5
Sending open messages (Social Coping) 9 Medical treatments (Treatment) 5
Acceptance (Cognitive Coping) 6 Cosmetic procedures (Active Coping) 4
Social support (Social Coping) 6 Sending open messages (Social Coping) 4
Years since onset (1–3 years; n = 20) 11–60% lost (n = 36)
Psychological treatment (Treatment) 6 Medical treatments (Treatment) 16
Peer support (Social Coping) 5 Peer support (Social Coping) 13
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Relativizing AA (Cognitive Coping) 4 Social support (Social Coping) 10

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Sending open messages (Social Coping) 4 Cosmetic procedures (Active Coping) 9

Social support (Social Coping) 4 Psychological treatment (Treatment) 9
Years since onset (3+ years; n = 142) 61–90% lost (n = 41)
Peer support (Social Coping) 45 Acceptance (Cognitive Coping) 12
Medical treatments (Treatment) 43 Relativizing AA (Cognitive Coping) 10
Cosmetic procedures (Active coping) 33 Social support (Social Coping) 11
Social support (Social Coping) 32 Peer support (Social Coping) 9
Acceptance (Cognitive Coping) 26 Sending open messages (Social Coping) 7
91–100% lost (n = 86)
Table 4. Subgroup analysis: Percentage of body hair loss (n = 146) Peer support (Social Coping) 30
Number of Relativizing AA (Cognitive Coping) 21
Subgroups, subcategories, and major themes times referenced Cosmetic procedures (Active Coping) 20
10% or less lost (n = 21) Social support (Social Coping) 20
Medical treatment (Treatments) 10 Medical treatments (Treatment) 17
Peer support (Social Coping) 5
Psychological treatment (Treatments) 5
Cosmetic procedures (Active Coping) 4
Social support (Social Coping) 4 Discussion
11–60% lost (n = 27)
Medical treatment (Treatments) 20
In this study, individuals living with AA offered suggestions
Peer support (Social Coping) 15
for coping with the onset and ongoing experience of AA. As
Contact with others (Social Coping) 14
part of an evolving body of literature, this study contributes
Cosmetic procedures (Active Coping) 12
to the existing work as its large and more diverse sample
Psychological treatment (Treatments) 9
size provides support for existing studies, in addition to
61–90% lost (n = 44)
the presentation of new factors for consideration. The fol-
Acceptance (Cognitive Coping) 11
lowing highlights important findings. Additionally, potential
Peer support (Social Coping) 11
limitations, clinical implications, and future research direc-
Cosmetic procedures (Active Coping) 11
tions are discussed.
Psychological treatment (Treatments) 11
Social support (Social Coping) 9
91–100% lost (n = 54)
Active Coping
Peer support (Social Coping) 17 Cosmetic procedures and strategies emerged as the pri-
Relativizing AA (Cognitive Coping) 14 mary strategy within this theme and the fourth largest over-
Medical treatments (Treatments) 11 all. It also emerged consistently across subgroups, although
Sending open messages (Social Coping) 11 among males, it was not one of the most frequently cited.
Social support (Social Coping) 11 As suggested by Zuchelli et al. (2022), this may be due to
social stigmas and gendered marketing associated with
of treatment and cosmetic procedures emerged more com- hairpiece use. Regardless, such coping strategies are fre-
monly among those with less scalp loss (0–60%) than those quently noted in the existing literature, particularly among
with greater loss (61–100%) (see Table 5). women (e.g., Matzer et al., 2011; Montgomery et al.,

Ó 2024 Hogrefe Publishing European Journal of Health Psychology (2024), 31(2), 45–55
 52 G. E. Huck et al., Peer-Recommended Coping Strategies for Individuals Living With Alopecia Areata

2017). Although many individuals report greater social sat- minimizing one’s complex experience may undermine the
isfaction because of cosmetic strategies (Park et al., 2018), dynamic disturbance presented by AA. Participants made
in the present study, some reported that use hindered their several suggestions for viewing AA that go beyond simplify-
acceptance of AA and only served as a “social buffer,” sug- ing hair loss to a medically benign condition. Suggestions
gesting that use might curb one’s adjustment and comfort were diverse and likely reflective of the notion that not
within social contexts. Furthermore, fear and anxiety of one specific way of viewing life with AA will be satisfactory
being “exposed” are of continued concern to some (Ald- for all individuals. In contrast, the results may suggest that
house et al., 2020; Montgomery et al., 2017). As such, these unique individuals should consider a variety of perspectives
strategies may be valuable for some individuals but may not to find one that best meets the needs of diverse psyches.
be ideal for all. Furthermore, the high number of participant This may be particularly true among males. Interestingly,
responses qualifying for placement in this subcategory may across the gender subgroup, cognitive coping strategies
be reflective of the commonplace nature of the suggestion, were offered by a higher percentage of males than females.
This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.

as opposed to the actual efficacy of use. This held true when comparing men to all other subgroups.
This document is copyrighted by the American Psychological Association or one of its allied publishers.

It is interesting to consider how cosmetic strategies exist This may be an important consideration. Prior research
in contrast to the subsequent recommendation that individ- suggests that males may have greater social concerns about
uals should be open and confident about AA. Being open hair loss (as opposed to perceived attractiveness; Barkaus-
should hypothetically ease social stress as one finds comfort kaite & Serapinas, 2020), and these findings may be reflec-
around other people, and hairpiece use is suggested as a tive of this. Another notable subgroup observation related
way of “hiding” one’s condition to ease the social burden. to the percentage of hair loss. Across each hair loss group,
There is an apparent discrepancy here. This may support individuals reporting greater loss (61–100% lost) more fre-
the notion that coping is unique to the individual, not quently recommend cognitive coping strategies as well. In
“one size fits all.” Many individuals with AA may hold contrast, those reporting loss ranging from 0% to 60% rec-
healthy perspectives on their condition yet utilize cosmetic ommended cognitive coping strategies to a far lesser
options. Others may not have reached a point in their degree. This may suggest a greater sense of hope and
adjustment where they feel comfortable being open. It is investment in medical procedures among those with lesser
likely important that individuals choose which option feels loss, as different forms of medical treatments were the
most appropriate for them at any given time. One may most commonly recommended strategies.
not be ready to bare their shaved head in public, and at that
time, this is the best way of coping for this individual. Pre-
vious research recognizes that one’s experience of AA is a Treatments
frequently evolving, dynamic process (Barkauskaite & Ser- Overall, the second largest subcategory was medical treat-
apinas, 2020; Davey et al., 2019; Hunt & McHale, 2005; ments. This subcategory may have been so substantial
Welsh & Guy, 2009). As such, for example, wig use in due to the broad grouping of responses and the general
the short term may be truly valuable to some individuals practicality of the suggestion. When experiencing the onset
who will gradually take on a more accepting stance. Of of any health condition, it is a social norm to seek out med-
note, the only other active coping strategy that emerged ical advice. As such, the frequency of responses in this sub-
in the subgroup analyses was “stress management,” which category may be associated with the routine practice of this
was the most frequently noted strategy among individuals suggestion, rather than the true value of doing so. Regard-
having lost 10% of their scalp hair. This may also be indica- less, medical treatments do work well for some individuals,
tive of the relevancy of where individuals are in their adap- and more effective treatments are reportedly on the horizon
tation. Interestingly, within this subgroup, the average time (Shelton, 2022). As such, medical advice should always be a
since onset was 5.5 years which was significantly less than first-line response, not only for exploring treatment options
the greater group (15.4 years). This may indicate that those but also to ensure one may not have a more serious condi-
recommending stress management are earlier in their life tion. As noted, medical treatments consistently emerged
span with AA and in turn, are more prone to recognize across hair loss subgroups among individuals reporting les-
unique stressors associated with onset. ser loss. Medical treatments were also commonly recom-
mended by females and individuals experiencing a
greater length of time since onset. Specific to females, Bar-
Cognitive Coping
kauskaite and Serapinas (2020) found that women feel
Within the cognitive coping theme, a variety of recommen- under greater pressure to have an “acceptable appearance.”
dations offered may be useful for maintaining a positive Such findings may reflect why medical, psychological, and
mindset despite the presence of AA. Recognizing that “it’s cosmetic strategies were more frequently recommended
just hair” may be valuable to some individuals. However, by females.

European Journal of Health Psychology (2024), 31(2), 45–55 Ó 2024 Hogrefe Publishing
 G. E. Huck et al., Peer-Recommended Coping Strategies for Individuals Living With Alopecia Areata 53

Also noteworthy within this theme was the psychological present across genders (Villasante Fricke & Miteva, 2015).
treatments subcategory. This was true within the greater As differences emerged in the subgroup analyses, it is
group and across multiple subgroups. It is promising that important to seek representative samples in future research
17% of participants viewed this as an important option, as as generalizations cannot confidently be extrapolated. It’s
it seems a large segment of people with AA underutilize also important to note that the Matzer et al. (2011) frame-
such services. People with AA must understand that their work was integrated as a key driver of initial themes and
burden is recognized and warranted. Furthermore, medical subsequent subcategories. This may have resulted in undue
clinicians must be aware of this subjective burden and con- influence from prior research with its inherent limitations
sider different resources and referrals that can optimize (e.g., sample size and diversity).
one’s adjustment. Consideration was also not given to where individuals
were in their adaptation to AA. Coping styles and successes
may be different at varying time points of psychosocial
This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.

Social Support adaptation. Furthermore, coping strategies identified in this

This document is copyrighted by the American Psychological Association or one of its allied publishers.

study were not associated with real-life outcomes, only

Social integration and support are well-documented as valu-
anecdotal recommendations. It is possible that discrepan-
able coping strategies for individuals experiencing almost
cies between what people did and what individuals
any type of health challenge (Tay et al., 2013). This held
would recommend to others could be present. For instance,
true in the present study and is consistent with previous
individuals under psychological distress may not be
findings on the AA experience (e.g., Barkauskaite & Serap-
able to employ a strategy that they might recommend
inas, 2020; Huck et al., 2021). Unsurprisingly, this was the
prospectively.
largest subcategory in the present study. Frequent mentions
Lastly, the elicitation of participant responses was limited
of social support were consistent across almost all sub-
to one open-ended question. Focus groups or semi-struc-
groups as well. Of note, all three forms of social support
tured interviews may be beneficial in future research so
were recommended by males, consistent with the position
that a fuller exploration of individual coping strategy suc-
that males tend to struggle more with the social implica-
cesses and shortcomings (e.g., strategies that didn’t work)
tions of AA (Barkauskaite & Serapinas, 2020). Connecting
may occur.
with peers seems to be beneficial for many people with
AA. However, it should be noted that in the Davey et al.
(2019) study, it was reported that some people suggested Clinical Implications and Future Research
this made them feel worse. This is an important reminder
The present study highlights diverse coping strategies rec-
that the experience of adaptation is unique to the individ-
ommended by individuals living with AA. Two important
ual. Additionally, many individuals with AA are thought to
considerations should be made when informing clinical
struggle in social situations (Davey et al, 2019), and may
practice. First, it is important to recognize that the effective-
have difficulty accessing and receiving social support.
ness of coping strategies is likely to be as diverse as each
Participants also frequently mentioned strategies involv-
individual experience of AA. The experience of AA means
ing being open about one’s life with AA. Such strategies
different things to those living within differing micro- and
are thought to be beneficial for normalizing life with the
macro-cultures. One may benefit most from an AA-focused
condition of oneself and for one’s extended social circle.
support group. Another may benefit from wearing a wig. As
This was consistent with Matzer et al. (2011) as well, in that
such, it may be important to uniquely tailor interventions.
positive associations were found between being open and
Secondly, the findings offer an important consideration
decreased subjective burden.
for all AA stakeholders, including both health practitioners
and people living with AA. Aside from treatments focused
on hair regrowth, every other recommendation relates to
Limitations
managing the psychological experience of people with AA.
The present study should be considered within the follow- Rates of comorbid mental health problems among this
ing context. Although steps were taken to ensure objectiv- group are extremely high. Individuals want this help and
ity, the study design is subject to unintended influence are seeking it out. The fact that this burden is oft-unrecog-
from the research team. It was also limited to a conve- nized is an oversight by the health providers. Researchers
nience sample of individuals self-identifying with AA. Indi- and other stakeholders have been calling for increased
viduals who volunteered to participate may be in a different awareness. It is time action is taken to ensure that profes-
psychological space than individuals declining to partici- sionals supporting people with AA have adequate knowl-
pate. Furthermore, female participants significantly out- edge of what types of resources this group may require. It
numbered males, despite AA being relatively equally is important to ensure that this knowledge reaches those

Ó 2024 Hogrefe Publishing European Journal of Health Psychology (2024), 31(2), 45–55
 54 G. E. Huck et al., Peer-Recommended Coping Strategies for Individuals Living With Alopecia Areata

who can integrate it into standard treatment paradigms Hunt, N., & McHale, S. (2005). The psychological impact of
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research should focus on the efficacy of the distinct types experiences of online peer support for those affected by
of coping described in the present study. Anecdotal reports alopecia: An interpretative phenomenological analysis using
are valuable, but systematic quantitative studies reviewing online interviews. British Journal of Dermatology, 181, 992–998.
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doi.org/10.1111/aphw.12000 Accepted November 14, 2023

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Thompson, D. M., Booth, L., Moore, D., & Mathers, J. (2022). Peer Published online February 15, 2024
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