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Journal of Ethnographic & Qualitative Research
2016, Vol. 11, 1–16 ISSN: 1935-3308
Women’s Pain, Women’s Voices: Using the Feminist
ecological model and a ParticiPatory action
research aPProach in deVeloPing a
groUP cUrricUlUm For chronic Pain
Guided by the feminist ecological model and employing a participatory
action research approach, the present study focused on the experiences
of 10 women with chronic pain in an integrated healthcare setting. The
women in this study participated in a seven-session group, which incorpo-
rated important dimensions of gender role awareness, power, movement,
and some trance work. Data was collected using open-ended surveys and
facilitator observations. Interpretive phenomenological analysis was used
to analyze the data collected through the course of the study. Findings sug-
gest that the quality of relationships with family, friends, and treatment
providers was central to women’s optimism about their prognoses and
assessments of well-being. The validation of experiences through group
process and the holistic focus of the group intervention for chronic pain
(elements of spirit, values, mind, and body) was associated with women’s
increased alignment with treatment providers as well as perceived symp-
tom improvement. A group curriculum, which culminated the collabora-
tive process between participants and researchers, is presented.
Oyenike Balogun-Mwangi, Ph.D., is a Postdoctoral Fel-
low at the Boston University Center for Psychiatric Rehabili-
tation in Boston, Massachusetts.
Mary Ballou, Ph.D., is Professor of Counseling Psychol-
ogy at Northeastern University in Boston, Massachusetts.
Atsushi Matsumoto, M.S., is a doctoral candidate in
the department of applied psychology at Northeastern Uni-
versity in Boston, Massachusetts.
Lee Faver, Ph.D., is a board certified clinical psycholo-
gist at Orchard Family Medicine in Vancouver, Washington.
Irina Todorova, Ph.D., is Clinical Associate Professor
of Health Psychology at Northeastern University, in Boston,
Massachusetts.
Correspondence regarding this article should be sent
to oyenike@bu.edu.
Oyenike Balogun-Mwangi
Boston University
Mary Ballou
Northeastern University
Atsushi Matsumoto
Northeastern University
Lee Faver
Orchard Family Medicine
Irina Todorova
Northeastern University
Balogun-Mwangi et al.
2
Definitions of chronic pain fall broadly into
two categories: those focused on the length of
time an individual experiences pain and oth-
ers on the driving factors and etiological un-
derpinnings of the condition. Falling in the
first category, the National Institutes of Health
(NIH; 2011) defines chronic pain using tempo-
ral language—“any pain lasting more than 12
weeks”—and further explains that acute pain is
a normal sensation that alerts us to possible in-
jury while chronic pain is distinctive in that it
persists for months or even longer. On the other
hand, Argoff, Albrecht, Irving, and Rice (2009)
and Vellucci (2012), for example, focus on the
complexity of chronic pain and, thus, define the
condition as one that is shaped by multiple fac-
tors and driven by the individual’s subjective
experience.
Prevalence and Treatment
Utilizing a cross-sectional, Internet-based
survey, Johannes, Le, Zhou, Johnston, and
Dworkin (2010) reported that chronic pain was
experienced by a third of the United States
population. Summarily, women experienced
chronic pain in higher numbers (34.3%) than
men (26.7%) with prevalence increasing with
age. Put another way, pain, persistent or other-
wise, affectsat least 116 million Americans (In-
stitute of Medicine, 2011), and the last two de-
cades have been rich with research addressing
treatments for chronic pain.
When exploring chronic pain alleviation
and management, the intersection of medical,
social, and psychological factors is particularly
salient. For example, the passing of the Afford-
able Care Act in the United States, with its fo-
cus on patient-centered, mental health, preven-
tative, and wellness services, has fueled interest
in integrated medical care (Johnson, 2013).
Medical care related to the understanding and
the treatment of chronic pain has become in-
creasingly advanced and involves a variety of
therapies including medication, surgery, physi-
cal rehabilitation, and a new awareness of pain
physiology.
One study that sought to provide a gener-
al overview of empirical evidence for the most
commonly used interventions for chronic pain
concluded that despite advances in the medical
realm, chronic pain syndromes remain poorly
understood and available treatments contin-
ue to show limited and modest effectiveness in
relieving pain (Turk, Wilson, & Cahana, 2011).
The limitations of a purely biomedical approach
to treating chronic pain such as the overdepen-
dence on pharmacological interventions, have
introduced a paradigm shift toward a more in-
tegrated approach (Johnson, 2013), which takes
into account the role of behavior, mental health
concerns, and health care costs as notable com-
ponents for understanding the nature and pro-
gression of illness. Furthermore, in one study
that challenged the tenets of the biomedical
model, the authors argued that the biopsycho-
logical approach espouses the duality of mind
and body as integral factors in health and well-
being and takes into account the effects of en-
vironment, social and behavioral factors which
is necessary if treatment is to move beyond a
model that exclusively reduces individuals to
their physical experience and symptoms (John-
son, 2013).
Chronic pain is often characterized by com-
plex interactions between physiology and psy-
chology, sensation and perception, and belief
and experience. Additional factors including
high rates of pain medication addiction, loss of
employment and subsequent financial burdens,
co-morbidity with mental health problems,
and erratic support systems, serve to increase
the intricacy involved in effectively and com-
passionately treating individuals with chronic
pain. Analyzing cross-sectional data of 5,328
adults over 65 years old, Braden, Zhang, Zim-
merman, and Sullivan (2008) examined the in-
dependent and interactive effects of mental ill-
ness and chronic pain on employment. Their
findings indicated that individuals with a men-
tal illness and suffering chronic pain were sig-
nificantly less likely to have had paid work in
the previous 12 months.
Additionally, Dunn et al. (2010) examined
the risk of opioid overdose related to long-term
opioid therapy for chronic pain and concluded
that individuals on higher doses of these med-
ications were at higher risk for overdose. This
is notable, as Manchikanti et al. (2006) found
that opioid and illicit drug use was demonstra-
bly higher among patients with chronic pain
with prevalence rates measured at 9% and 16%
respectively. Furthermore, a growing number
of reports geared toward policy change (e.g.
Action ReseARch in Developing A chRonic pAin gRoup 3
Ballweg, Drury, Cowley, McCleary, & Veasley,
2010) suggest that a gender disparity exists in
the treatment of chronic pain, whereby wom-
en’s experiences of chronic pain are considered
less valid and their conditions less aggressive-
ly treated than those of men with chronic pain.
Moreover, women’s symptoms and complaints
are very often misdiagnosed, delaying appro-
priate treatment. Fortunately, some research-
ers have begun to explore gender differences in
the experience of pain, including whether pain
is experienced with differing intensity across
gender (e.g. LeResche, 2011). However, when
disparities are highlighted with regard to wom-
en with chronic pain, there are notable con-
sequences including further isolation of wom-
en with chronic pain and their distrust of, or
more ambivalent dependence on, health care
professionals.
Integrated Treatment for Chronic Pain
Cognitive behavioral therapy (CBT) has
been the standard for psychological interven-
tion addressing chronic pain syndromes. A
meta analysis of 33 papers demonstrated strong
support for CBT in treating chronic pain expe-
rience, cognitive coping and appraisal (posi-
tive coping measures), and reducing behavioral
expression of pain (Morley, Eccleston, & Wil-
liams, 1999). Molton, Graham, Stoelb, and Jen-
sen (2007), for example, provided a review of
the rationale and evidence for three commonly
used psychosocial treatments for chronic pain
including CBT, operant-behavioral therapy and
self-hypnosis. The authors concluded that the
focus of all these treatments, in addressing the
factors that influence the persistence and exac-
erbations of chronic pain symptoms, was effec-
tive when used as part of an integrated or mul-
tidisciplinary treatment plan.
Additionally, a randomized controlled trial
of CBT for chronic pain concluded that pre-post
changes in pain beliefs, catastrophizing and
self-efficacy were significant mediating factors
suggesting that there is evidence for the effica-
cy of this treatment in modifying beliefs about
pain (Turner, Holtzman, & Mancl, 2007). CBT
has also been found to lead to improvements in
quality of life indicated by positive changes in
disability, reduced depression, and to a lesser
extent, reduction of pain. However, Eccleston,
Morley, and Williams (2013) summarized that
while CBT has been shown to result in posi-
tive gains in mood, pain, and disability primar-
ily among adult populations, the effect sizes of
these studies are very modest. These findings
are sobering given that there is strong depen-
dence on psychological interventions as adjunc-
tive treatment for chronic pain.
Importantly, integrated treatments for
chronic pain are associated with significant im-
provements as compared to single modality
treatment such as CBT or medication. Patients
receiving integrated treatments have demon-
strated significantly higher psychosocial func-
tioning, reduced use of pain medications, less
psychological distress, and fewer health care
visits when compared to single modality treat-
ment (Oslund et al., 2009). Studies have also
demonstrated that integrated interventions,
which incorporate CBT in conjunction with oth-
er therapeutic techniques, were more effective
for patients in managing pain (e.g. Lee, Craw-
ford, & Swann, 2014).
Using a naturalistic prospective controlled
cohort study, 307 participants were assigned to
two groups comparing the efficacy of an inter-
disciplinary pain management program and a
standard rehabilitation treatment provided in
an inpatient settings (Angst, Verra, Lehmann,
Brioschi, & Aeschliman, 2009; Gatchel, McGrea-
ry, McGreary, & Lippe, 2014). At the conclusion
of the study, participants in the interdisciplin-
ary treatment reported greater improvement in
pain, social functioning, catastrophizing, and
ability to decrease pain. However, at 6-month
follow up, participants in the standard treat-
ment group showed higher levels of physical
functioning, social functioning, anxiety, and life
control, suggesting that the initial gains of inter-
disciplinary treatment may ebb over time.
Systematic reviews of randomized con-
trolled trials, like this study by Scascighini,
Toma, Dober-Spielmann, and Sprott (2008),
concluded that multidisciplinary interven-
tions were higher in effectiveness, especially
for lower back pain and fibromyalgia. Nota-
bly, a growing number of studies have looked
at other interventions that are often included
as adjuncts to medical interventions. For ex-
ample, a mindfulness approach to stress reduc-
tion and the focused integration of mind and
body through meditation (Grossman, Niemann,
Schmidt, & Walach, 2004; Rosenzweig et al.,
2010), has been shown to be a powerful tool
Balogun-Mwangi et al.
4
when incorporated with conventional medi-
cal treatments for a wide variety of conditions
ranging from cancer to psoriasis to fibromyalgia
(Grossman, Tiefenthaler-Gilmer, Raysz, & Kes-
per, 2007; Ott, Norris, & Bauer-Wu, 2006).
Phenomenology of Pain
Some researchers have posited that the
most notable gap in chronic pain research is the
propensity to focus on discrete elements of the
pain experience rather than a holistic perspec-
tive whereby chronic pain is understood to in-
clude physical, psychological, and spiritual suf-
fering (Honkasalo, 2000; Thomas & Johnson,
2000). Honkasalo (2000) explains the phenom-
enology of pain as the “in-between” and “where
human existence is situated” (p. 198). What
is striking in the research on the phenomenol-
ogy of pain is the approach to capturing and re-
porting pain experiences. By and large, phe-
nomenological researchers have focused on the
meanings that individuals with chronic pain
ascribe to their experiences (Honkasalo, 2000;
Thomas & Johnson, 2000).
For example, Ojala et al. (2015) used Gior-
gi’s four-phase phenomenological method to
analyze transcribed interviews from 24 most-
ly middle-aged participants who had current
lived experience of chronic pain. The partici-
pants in the study made strong arguments for
the ways in which chronic pain not only affect-
ed their bodies but also reverberated into psy-
chosocial spheres including experiences of dis-
tress, loneliness, lost identity, and low quality
of life. The researchers concluded that address-
ing psychosocial distress must be an integral
component of chronic pain treatment. Over-
all, there is strong evidence for the extreme dis-
tress of chronic pain sufferers across multiple
spheres of life. For example, individuals living
with chronic pain experienced their condition
as invisible in the biomedical context and there-
fore judged as subjective and invalid (Ojala et
al., 2015; Sharpe, Alderson, & Collins, 2013).
Other researchers found that individuals
living with chronic pain perceived their bodies
as unfamiliar and permanently altered (Sharpe
et al., 2013), and were perpetually aware of
their pain areas in ways that demanded all con-
scious resources (Thomas & Johnson, 2000).
Additionally, pain was often experienced as iso-
lating and separating, and a condition in which
individuals felt forever trapped (Sharpe et al.,
2013). Importantly, the reactions of others
to whom distress was expressed served to ei-
ther agonize or subside the experience of pain
among individuals with chronic pain. A recent
study of 92 adults with chronic lower back pain
concluded that discounting of pain experience
by others resulted in increased experience of
pain impairment (Wernicke, de Witt Huberts, &
Wippert, 2015). Interestingly, Doth, Hansson,
and Jensen (2010) noted that patients with neu-
ropathic pain were more likely to have lower
appraisals of health status. Specifically, as pain
increased, there was a reduction in health util-
ity or perceived health status.
Feminist Ecological Model
Informed by the feminist ecological model
(FEM; Ballou, Matsumoto, & Wagner, 2002; See
Figure 1), the current study sought to highlight
the voices of women living with chronic pain,
placing their experiences at the center of under-
standing where interventions adequately meet
needs or fail to be effective. The feminist eco-
logical model contends that a successful inter-
vention must listen to, integrate, and honor the
experiences of an individual; consider interac-
tions between individuals and multiple spheres
of influence; and facilitate changes not only for
participants, but for systemic variables as well.
The FEM also encourages considerations into
interactions of signifiers of identities (e.g., sex
or gender, race, class and age) and multiple lay-
ers of influence in which individuals experience
their lives. These layers include (a) Individual
(intellectual, emotional, physical, and spiritual
dimensions of a person), (b) Microsystem (rela-
tionships, community, employment, activities),
(c) Exosystem (institutional forces including le-
gal, governmental, educational, religious, pro-
fessional), and (d) Macrosystem (structural and
environmental forces including politics, econo-
my, values, worldviews, human rights, global
distribution of resources).
Participatory Action Research
The process of the current project was fur-
ther guided by participatory action research
(PAR; Cahill, 2007), which is in line with the
FEM. Practitioners and participants served as
collaborators in the design and implementation
Macro-Exo
Age
Sex/Gender
Class
Race
Planetary/climatic
History
Figure 1
Feminist Ecological Model
Macro –Exo (global, regional,
state, national)
-Political/Economic/Social
-Values
-Culture
-Ethnicity
-Education
-Social Institutions
-Distribution of resources
-World views
-Religion
Micro –Immediate face to face
interactions and influences
-Family
-School
-Work
-Church
-Neighborhood
-Friends
-Disability
Individual –Multiple
dimensions of the self
interacting over time
-Biological
-Emotional
-Cognitive
-Creative
-Social
-Sexual
-Intuitive
-Spiritual
-Physical
Individual
Micro
Action ReseARch in Developing A chRonic pAin gRoup 5
of the group intervention. The roots of PAR are
linked to the work of Paolo Freire, who used the
approach to encourage self-examination among
oppressed communities (Baum, MacDougall,
& Smith, 2006). In PAR, study participants are
pivotal to the process of problem-identification,
treatment-development, and result-dissemina-
tion (Dold & Chapman, 2012). Empowerment
of those involved is a crucial element of PAR
whereby the focus is primarily on “reducing in-
equalities and power differences” (Baum et al.,
2006, p. 855). Empowerment and action are
central tenets of PAR by encouraging egalitarian
discourse between researcher and participants
(Baum et al., 2006). The action component in
this study involved developing a curriculum or
design for a chronic pain group.
PAR has been shown to be effective in men-
tal health contexts (e.g., Matarese, McGinnis,
& Mora, 2005), and community health settings
(e.g., Gosin, Dustman, Drapeau, & Harthun,
2003). Macaulay et al. (1999), after a review
of PAR in primary care settings, argued that the
involvement of the community in the research
process may increase the translations of find-
ings into action and also will relate the infor-
mation gained to the needs, experiences, and
perceptions of those who have the condition.
Hampshire (2000) worked with action research
in medical settings and found that patient
perspectives gathered through focus groups, in-
terviews, questionnaires, clinical notes, and re-
search team members were pivotal to creating
change in medical organizations and practices.
To that end, the researchers and the research
participants are in collaboration and represent
multiple sources of information from which
treatment evaluation and curriculum develop-
ment can be informed. Just as qualitative re-
search rests on a different way of knowing than
quantitative research, action research seeks a
different way of approaching change than tra-
ditional intervention programs. In action re-
search, the researcher does not seek to control,
as does the traditional researcher. Rather, the
role of the researcher is to participate mean-
ingfully and productively in the generation of
knowledge and in developing effective changes
and options. Participants are the experts. The
experience and subjectivity of the participants
is the criterion for knowledge. Action research
is oriented toward enhancing the understanding
of practical action and making it effective. The
process includes careful planning and evalua-
tion and then re-designing based on the infor-
mation gained from the participants and group
process (Murray & Chamberlain, 1999; String-
er, 2013).
Method
Participants
A total of 12 women with chronic pain
were referred to a chronic pain group exclu-
sively for women, to be screened for a seven-
session pain group to be held in an integrated
healthcare setting in the Northeastern United
States. The women were referred through pri-
mary care physicians, mental health counselors,
or the pain clinic, to a psychologist for evalua-
tion as to their appropriateness for the group.
The psychologist provided detailed information
about the group and also assessed for inclusion
criteria. All of the women were receiving medi-
cal treatments for chronic pain including phys-
ical therapy, medications, and/or electric stim-
ulation. Participation criteria included chronic
pain as diagnosed by a physician, ambulatory
status (defined by the ability to physically be
present at the one-and-a-half-hour group ses-
sions, where sitting and standing for brief peri-
ods of time would be required), no major mental
health diagnoses excluding anxiety, depression
and PTSD (provided the women were receiving
treatment), and the wish to join with others in
exploring an experience of group intervention
for chronic pain. Ultimately, 10 women met the
criteria and provided consent to participate in
one of two subsequent groups (4 women in an
initial group and 6 women in a second group).
The women ranged in age from 38 to 85
years. Of the sample, four women were sin-
gle, two were married, two were widowed, and
two were separated/divorced. Three wom-
en reported that they were college educated,
three were unemployed, and two were receiv-
ing disability benefits. Five women indicated
that they suffered from moderate to severe back
pain, two women were diagnosed with fibro-
myalgia, one woman indicated challenges asso-
ciated with degenerative spine, and one wom-
an had a diagnosed autoimmune disease. Four
women indicated comorbid mental health diag-
noses, including depression, anxiety, and PTSD
(see Table 1 for de-identified characteristics of
participating women).
Procedure
Each group of women completed a seven-
session, one and a half hour, group curriculum.
Three group leaders (two psychologists and a
vocational/adult education counselor) facilitat-
ed group sessions. A psychologist, a physician,
and a vocational/adult educator led the second
group. Both groups were offered in the same
family medical clinic and used the same screen-
ing measurement procedures.
After each session, based on feedback from
participants’ observations, group leaders dis-
cussed modifications for the following week.
The group content and structure was tailored
each week to fit the dynamic experience of
the group while adhering to the overall design
and goals of the curriculum. During the sec-
ond, fifth, and seventh sessions, the group dis-
cussed the preceding sessions and the impact
on their subjective experience. In line with the
participatory action research framework of the
study, participants’ feedback about each week
informed the sessions that followed. Specifical-
ly, the curriculum of the second group varied
slightly because insights from the first were inte-
grated into the second. For example, in the first
group, it was quite clear that the participation
Balogun-Mwangi et al.
6
Table 1
Participants
Pseudonym
Age
Description of Pain
Area and Other
Reported Symptoms
Ecological Factors
Course of Treatment Prior to
Intervention
Sophie 71 Back pain; high blood
pressure; depression
Move to new city;
recent death of spouse
None reported
Simone
55
Pain as a result of
multiple back surgeries
Parent; substance abuse
history; primary
caretaker to aging
parents
Pain medication; month-long
residential pain management
program
Andrea
85
Arthritis, degenerative
spine
Parent; recent death of
spouse
Pain medication
Margaret
45
Fibromyalgia;
pervasive pain, fatigue
and weakness;
depression
Business owner
None reported
Shelly
46
Joint pain and
headaches
Employed in healthcare
Pain medication
Julia
38
Severe back pain
(affecting mobility)
Work-related injury;
recent break-up with
significant other;
financially supported
by family
CBT, pain medication
Mercy
45
Pain as a result of back
surgery
Move to a new city;
unemployed
Medication
Tanya
55
Autoimmune disease;
gastrointestinal disease
Lay off from job;
history of substance
abuse
None reported
Diana
58
Ambulatory difficulty
(requiring assistance
for most activities of
daily living) PTSD
Domestic violence
survivor
Narcotic pain medication
Anne
54
Arm pain; back pain;
fibromyalgia
Divorced;
contemplating
retirement; financial
concerns
Pain medication
Action ReseARch in Developing A chRonic pAin gRoup 7
of a medical doctor (MD) providing accurate
medical information was very desirable. As a
result, an MD was included as an ongoing lead-
er in the second group, rather than having a
single consult as in the first group. The sec-
ond change was in the trance work. Because
the participants in the first group were uncom-
fortable with tensing their muscles, progressive
muscle relaxation was replaced with breathing
and imagery as route to trance. Similarly, exer-
cise in the form of gentle movement and walk-
ing was built into the second group.
Data was collected from several sources in-
cluding participants’ written responses to open-
ended questions following the first session and
the end of the seventh session. The open-end-
ed questions prompted responses on the wom-
en’s perceived quality of physical well-being,
mental well-being, interactions with treatment
staff, interpersonal relationships, and mind-
body concerns. The texts from these open-end-
ed responses were the basis for in-depth anal-
ysis. The qualitative method utilized in this
study – specifically, the analysis of brief, self-
report, written texts – has some support in lit-
erature, especially when the purpose of the
study is to examine how individuals come to
understand their life experiences (e.g., Riley &
Hawe, 2005). Also using a PAR design, Baker
and Wang (2006) utilized open-ended response
documenting notes and impressions. Each au-
thor compiled notes on each woman in tabu-
lar format.
All three authors met to present prelimi-
nary impressions and recurring and emergent
themes. Similar themes that occurred in more
than three cases were listed as recurring themes.
Themes that occurred in two cases or less were
listed as emergent themes. To ensure internal
validity, a fourth author reviewed the final list
of themes to ensure that there was sound rep-
resentation of each in the women’s respons-
es. Given that IPA invites researchers to use
their own unique lens in interpreting the data
(e.g., background, lived experience, knowledge
of the subject), authors met frequently to dis-
cuss impressions of the women’s experiences as
a means of observing personal reactions to find-
ings, reframing conclusions, and inviting nov-
el perspectives for interpreting the data. The
authors also employed an idiographic approach
whereby women’s responses were examined,
discussed, and analyzed individually, complet-
ing one case before moving onto the next. Ul-
timately, each woman in the study contribut-
ed to the final group curriculum, which served
as her opportunity to reject, amend, or approve
aspects of the group that were of personal sa-
lience. Ultimately, participants’ ratification of
the group curriculum is evidence of the validity
of group process and interpretation of individu-
al contributions.
Results
Integrating all sources of information gath-
ered over the course of the group (participant
contributions and group leader observations),
several themes were identified to be relevant
to the chronic pain group. Overall, the wom-
en conjured a variegated range of sentiments in
their evaluation of their lived experiences. Spe-
cifically, five themes were identified following
analysis of the data: (a) physical limitations as
opportunities for growth, (b) unpredictability
and inevitability of pain, (c) “giver” to “receiv-
er” identity change, (d) tenuous relationships
with treatment teams, and (e) silence on issues
of power and gender. Pseudonyms were used
to identify specific participants in the presenta-
tion of our results (see Table 1).
formats (as well as other methods of inquiry) to
examine the pain experiences of clinic and non-
clinic black and white adults over 50 years of
age. Daiute (2014) argued; “Even when details
of the context are unknown to a reader or listen-
er, a narrative…points beyond its brevity and
pulls in the careful reader/listener’s curiosity
and ideas about the surrounding situation” (p.
2). Additionally, a second source of data was
leaders’ completed observational notes after
each session regarding their own perceptions of
the dynamics during the groups. Group leaders
wrote down insights shared by participants dur-
ing group interactions, and these were also in-
cluded in the analysis. Overall, these materials
were used to describe group dynamics and par-
ticipants’ experiences and inform the full anal-
ysis as well as the design and implementation
of the group.
Data Analysis
Data was analyzed using the interpretive
phenomenological approach (IPA; Smith, Flow-
ers, & Larkin, 2009). Central to IPA is a focus
on understanding how individuals understand
or make meaning of their experiences. The
women’s responses were analyzed with the
aim of gaining deeper understanding of chron-
ic pain experiences (Willis, 2007). IPA is found-
ed on the assumption that participants’ words
are linked to their thoughts and emotional state
and thus, words convey much more about lived
experiences than is readily apparent (Smith &
Osborn, 2007). The first stage of IPA analy-
sis involves reading and re-reading the data to
gain familiarity while noting observations, sim-
ilarities, and highlighting contradictions. The
second stage includes the documentation of
emerging themes by transforming initial notes
to concise phrases. Thirdly, the researcher re-
views the listed themes with an aim to find con-
nections between them. The final stages of IPA
involve ordering of the themes based on ana-
lytical elements or theory in a way that makes
sense of connections between themes. The fi-
nal list of themes is checked against the tran-
scripts to ensure that connections are support-
ed by the contributions of participants. To that
end, three of the authors read the respons-
es provided by each woman separately, while
Balogun-Mwangi et al.
8
Physical Limitations as Opportunities
for Growth
Frequently discussed in the groups was the
degenerative course of chronic pain and the sub-
sequent loss of dexterity, mobility, and effortless
movement previously taken for granted. There
was a pervasive sense that the women mourn-
ed the loss of painless movement and were re-
minded that certain activities were beyond their
physical reach. Women used words like “poor”
and “mercurial” to describe their current phys-
ical condition. Simone, a 55 year-old woman,
stated that she had no hope for recovery and
held a universally pessimistic view of her cir-
cumstances as a result of her experience of per-
petual pain: “It is easier to believe in the dev-
il--the world, society, government, greed--hate
all of it.” In the majority of sessions, several
women were nostalgic as they discussed the ac-
tivities in which they were once involved. For
many, there was a sense that their once vibrant
lives were now quite dull.
In some sessions, discussions had notes of
pointed optimism with women making cheer-
leading statements to others and in reference
to their own circumstances. Anne, a 54-year-
old woman, voiced her belief that her condition
was a part of her life and did not encompass
the totality of her experience in the world by
stating, “I am not defined by my physical loss.”
Some women saw the physical challenge as
character-building, an opportunity to focus on
unexplored areas of their lives. A 71-year-old
participant, Sophie, reported that she was vol-
unteering in a nursing home and had adopted
a pet. Andrea, who was 85 years old, an avid
dancer in the past, found that she was equally
energized by travel and a weekly game of bridge
with friends.
Summarily, women viewed their experi-
ences of pain as revelatory in terms of push-
ing them toward experiences and activities they
would otherwise not have considered. That
women were appreciative of their pain as an in-
troduction to new experiences is made clear in
this statement: “I learned what I can and can-
not do and have found ways to give meaning to
activities I am able to engage in.” Three partic-
ipants reported that they were channeling their
frustrations about their physical condition into
a renewed focus on spiritual growth. Mercy,
a 45-year-old woman, indicated that she was
making a conscious effort to focus on accept-
ing her physical condition each day, whether
pain-free or painful. A 55-year-old participant,
Tanya, who had recently moved from a large
city to care for her aging parents, noted that she
welcomed her time of recuperation as an op-
portunity to reconnect and strengthen familial
relationships.
Group leaders also noted the apparent ben-
efits of relational connections among group
members. For example, each participant was
able to recognize salient changes in other group
members and shared these observations. This
mutual support may have helped some partici-
pants to notice changes in themselves that they
may not have recognized before. While in ini-
tial sessions participants defined themselves as
broken, lacking purpose, or powerless, group
leaders noted women redefining themselves in
latter sessions. In the second group, the use of
a drawing activity encouraged the women to ex-
plore themes of perception and interpretation in
order to make connections to their sense of cop-
ing with pain. Group leaders noted that while
some women did not find this experience par-
ticularly noteworthy, other women were able to
identify differences and commonalities in the
ways each experienced pain and these women
described this shared experience as powerful,
insightful and liberating.
Group leaders also noted that the majority
of the women reported the helpfulness of mind-
fulness meditation in controlling pain sensa-
tions. Some participants reported reduced use
of pain medication, and two participants termi-
nated use of pain medication altogether. Group
leaders noted that participants spontaneously
broached the importance of the group in their
personal growth as well as improvements in
their experiences with pain.
Unpredictability and Inevitability of Pain
A recurring theme in the groups was the
unpredictable nature of pain. There was agree-
ment in the group that while there were periods
of relative calm, the women knew that relapses
could occur at any time. Sophie described the
capricious nature of her experience with chron-
ic pain as “a roller coaster...not the joy ride fun
kind either. More like a long scary drop then
a slow ascent back up to the top.” It was ap-
parent that many of the women felt saddled by
Action ReseARch in Developing A chRonic pAin gRoup 9
the unpredictable nature of their condition and
feelings of anger and frustration were appar-
ent as a result. Some women stated that they
feared making long-term plans because it was
always a possibility that they could be in pain.
There was a pervasive sense in the group that
there was inherent unfairness to an existence
mired in physical pain. The women further dis-
cussed their inability to enjoy times when they
were free from pain because they spent these
times dreading what they believed was the in-
evitability of relapse. That the women viewed
their pain as a constant torment and ever-pres-
ent source of distress is apparent in this state-
ment by 54 year-old Anne:
My pain seems to be one flare that nev-
er completely goes away. Every day I
know I will wake with pain—it just de-
pends on the degree. And I know that
when I work, the pain level is going to
get worse.
By all accounts, women were at their most pes-
simistic when expressing the capricious nature
of their pain experience and how this impact-
ed periods of relative painlessness. This is to
say that even during periods of relief, women
shared feelings of impending doom as they ful-
ly expected that any reprieve was temporary.
Notably, women observed that they were ten-
tative in negotiating work, social interactions,
and other pursuits in order to protect from inev-
itable disappointment of having to withdraw as
a result of relapse.
“Giver” to “Receiver” Identity Change
The use of individual stories and visualiza-
tion exercises aided discussions around how
strongly chronic pain was linked to the wom-
en’s identities. These explorations highlight-
ed the challenges some women had separating
from their pain identities and seeing other sides
of themselves. Within the group, discussions
about self and identity offered opportunities for
women to explore ways in which chronic pain
had affected their interpersonal relationships.
Every participant reported that her closest rela-
tionships were adversely affected by her condi-
tion. The majority indicated that their pain and
discomfort resulted in more incidences of con-
flict within their immediate social networks. Ad-
ditionally, the majority of participants felt they
were a burden to their closest family members.
It was apparent that many of the women be-
lieved they were a burden because of their de-
pendence on others. For the women, there was
a sense that their identity had become one of
“receiver” in relationships. This suggests that
the women felt others had power and they were
often in the role of supplicant.
Themes of loss and nostalgia typically ac-
companied these discussions as the women re-
called their previous selves. It was evident that
participants were struggling with a new identity,
one that they perceived as weaker, dependent,
submissive, and needy. Several of the women
noted a desire to return to caretaker or “giver”
roles, particularly strong parenting roles. For
them, dependence on their children was espe-
cially painful. It was clear that the women de-
sired relationships with others that were not de-
fined by their condition. What was noted here
was that the women valued their independence
and longed to preserve what remained and sal-
vage the autonomy they felt they had lost.
Tenuous Relationships with
Treatment Teams
Experiences of participants revealed not
only a perceived need for acquiescence to gain
access to treatment but also devaluing or dis-
missive reactions from physicians. Group lead-
ers identified themes of domination and sub-
jugation in response to the experiences shared
by participants. A recurring theme was the
women’s frustration and disillusionment with
the treatment they received from their medi-
cal teams (doctors, rehabilitation specialists,
nurses, occupational therapists, and so forth).
The women described unreliable communica-
tion with medical personnel. Specifically, sev-
eral participants noted that medical consulta-
tion was not always available when they were
in distress. Secondly, they recalled exchanges
with medical workers that minimized their ex-
periences or devalued their descriptions of their
symptoms. Overall, themes of disrespect and
disempowerment were evident in women’s de-
scriptions of treatment received from medical
teams. Many women identified these tensions
as catalysts for their pain. Additionally, dis-
agreements with medical personnel about phar-
macological intervention were of particular im-
portance to the women in the group. Several of
the women had resisted medical advice to cut
Balogun-Mwangi et al.
10
down on current doses of pain medication. Sev-
eral women discussed the long-term ineffective-
ness of medication but reiterated the lack of al-
ternate solutions to their pain.
Overall, the women’s contributions sug-
gested that relationships with medical teams
were hierarchical and their voices were not of
import. There was a sense that the women de-
sired to be seen as experts because pain was an
inescapable part of their lived experience. Very
rarely did women feel that they were viewed
as accurate reporters of their physical experi-
ence. A few women who had strong relation-
ships with their doctors noted that they val-
ued these relationships and believed that these
interactions improved the interventions that
they received.
Silence on Issues of Power and Gender
This final theme was notable in that it did
not emerge from the contributions of partici-
pants but rather, from the observations of mul-
tiple group leaders across both groups. While
participants actively engaged in discussion
around their daily pain experiences, relation-
ships and group activities, as well as the course
of medical treatment, the leaders noted that the
introduction of societal and systemic themes
did not generate much group discussion. Spe-
cifically, the participants were not verbally re-
sponsive to explorations of gender and social-
ization of sex roles. Similarly, silence about the
presence of power dynamics in the interperson-
al interactions with leaders as well as visiting
medical providers were noted in observational
notes from several sessions. Yet at the last ses-
sion of each group, many of the women spoke
of how eye-opening ideas of power and gender
role expectations had been in expanding their
understanding of the systemic structures that
they navigated daily. The leaders posited that
these insights may not have had time to emerge
from within the membership in so short a time
period. There may also have been cohort/gen-
erational barriers for the older women within
the group to thinking critically about power and
gender as active forces in their experiences gen-
erally and with medical teams. Leaders also
wondered with the groups about whether or not
silence on issues of power and gender may have
resulted either from the subject not resonating
or from the idea of deconstructing gender roles
and discussing power being threatening.
Discussion
The aim of this study was to give women
with chronic pain a forum to voice their experi-
ences. What resulted was a sobering view of a
life lived with chronic pain. At the same time,
there was a courage and defiance that came
across in the women’s desires to triumph over
and own their destiny. Unique aspects of this
study included a clear grounding in a feminist
ecological understanding as well as a partici-
patory action research objective. A central pri-
ority in the design and implementation of this
study was highlighting the current research
landscape whereby women, who were dispro-
portionately affected by chronic pain, remain
peripheral voices in its formulation. Moreover,
participants were rarely included in the process
of treatment evaluation and development, as
were these women.
This study demonstrates that for women
with chronic pain, incessant physical discom-
fort and, for some, suboptimal mobility, came
with the loss of the abilities and activities that
once defined them. Interestingly, studies have
explored the ways in which pain experienc-
es impact engagement in meaningful activity.
For example, in a study examining pain beliefs
among 12 men and women, Stenberg, Fjellman-
Wiklund, and Ahlgren (2013) found that all par-
ticipants experienced their bodies as fragile and
were reluctant to engage in any activity (nov-
el or otherwise) that could further compromise
its state.
Also, Mackichan, Adamson, and Goober-
man-Hill (2013) assert that activity restriction
is not uncommon among chronic pain suffer-
ers and is detrimental to prognosis. However,
in their research, the authors noted that con-
ventional approaches have been ineffective in
encouraging activity increase in people with
chronic pain. Notably, the unpredictability and
pervasiveness of pain in the lives of the women
in the present study further dampened interest
in social engagement, both in familiar and nov-
el activities. The social isolation that resulted
increased women’s susceptibility to emotional
distress and was often perceived as a catalyst
for relapse. The links between withdrawal from
activity and mental health outcomes are also
Action ReseARch in Developing A chRonic pAin gRoup 11
important to note from extant research. One
such study, which examined a nationally rep-
resentative sample of 114,897 Canadian adults,
found that individuals with chronic pain were
less likely to endorse flourishing mental health
(Gilmour, 2015). It is clearly indicated that fur-
ther research is necessary to explore ways to re-
engage individuals with chronic pain in mean-
ingful activity.
It was also observed in this study that
women struggled with an identity shift where-
by they highlighted a transition from autonomy
and independence to having little control over
their lives and were, instead, highly dependent
on others for assistance and support. For wom-
en who were also mothers, dependence on their
child/children was cause for emotional distress,
e.g., guilt and shame. That illness is often ac-
companied by identity reconstruction has sup-
port in current literature. For example, Wilson,
Whitehead, and Burrell (2011) employed a her-
meneutic phenomenological approach to ex-
amine positive identity development among 10
women living with chronic conditions. Women
in the study observed a gradual shift from see-
ing the condition as defining their whole selves
to accepting chronic discomfort as but a part of
their lives. Importantly, the women included in
the same study were aware that they eventually
incorporated chronic discomfort into their iden-
tities in a process of positive self-redefinition.
In the present study, this process appears to be
at work as women identify ways in which they
are able to see personal growth and self-discov-
ery in the face of their daily pain and adversity.
Also important to the theme of identity
change is the ways in which the loss of self-
defining activity impacts people with chron-
ic pain. Studies focusing on athletes following
performance-ending injuries may inform the
ways in which individuals with chronic pain
may struggle to make meaning of the chang-
es brought about by their physical limitations.
For example, using a narrative approach, Perri-
er, Smith, Strachan, and Latimer-Cheung (2014)
interviewed 11 athletes following injuries that
ended participation in their respective sports.
One interesting finding was that participants’
identities as athletes versus non-athletes were
related to the amount of time since the injury
occurred. Specifically, participants were more
likely to reject their identities as athletes when
their injuries were more recent.
In the present study, the women’s strug-
gle with dependence in their interpersonal rela-
tionships as well as tenuous relationships with
treatment teams reflects central tenets of the
ecological model, which guided this study. The
quality of their interpersonal relationships was
crucial to their feelings of well-being. More-
over, women expressed the feelings of distress
that came with dependence on the others in
their lives. The feminist perspective guiding
the study would highlight relationships and also
point toward the loss of identity as related to an
economic system where work and productivity
are the measure of a successful life and person-
al value. Evidence of this is seen when women
shared that a primary motivation for seeking in-
tervention was to find effective treatments that
would allow them to free significant others from
the burdens of caring for them.
In an interesting review of literature, Gor-
vin and Brown (2012) explore the psychology of
feeling like a burden and reach some interesting
conclusions that suggest that when individuals
feel like a burden, it has less to do with actual
dependence and more to do with individual per-
ceptions that are driven by the ideals of society
about established social roles. They argue, as
we do here, that women internalize social con-
structions of their purported roles within their
social spheres and much distress is noted when
they perceive themselves to fall short. These in-
ternalized shortcomings are not without conse-
quence as is shown by Kowal, Wilson, McWil-
liams, Peloquin, and Duong (2012), who found
that self-perceived burden was endorsed by
70% of their sample of individuals with chronic
pain and was correlated with ratings of pain in-
tensity, functional limitations, symptoms of de-
pression, attachment anxiety, pain self-efficacy,
caregiver burden, and suicidal ideation.
An important implication of these findings
contradicts the assumptions of malingering that
often accompany interactions between female
chronic pain sufferers and treatment providers.
Additionally, the women felt powerless to assert
themselves within hierarchical medical systems
and social services dominated by highly edu-
cated males, limited treatment protocols, and
long waits for appointments. More than half
the women in the group, for example, had been
denied disability benefits. One way to under-
stand the impact of this systemic challenge was
Balogun-Mwangi et al.
12
to examine the responses of these women who
understood their failed disability applications
to mean that their experiences did not meet a
threshold of severity that would warrant gov-
ernment assistance.
The participants silence around, but appar-
ent awareness of, the meaning of power and
gender in their negotiation of systems and sup-
ports is very important to understanding their
chronic pain, and is an area requiring further
exploration. Few articles have examined the
gendered dimensions of chronic pain as it re-
lates to interactions with individuals who are
perceived to have evaluative or decision-mak-
ing power, e.g., medical personnel. Overall, as
in the group, there is a palpable research void
in the exploration of gender and power as likely
important factors in the interface between indi-
viduals with chronic pain negotiating an estab-
lished and rarely challenged biomedical system.
Werner and Malterud (2003) noted in their
qualitative research that women with chronic
pain took great pains to manage their affect and
communication when in the presence of doc-
tors in order to appear more credible. Clearly,
there is room for further research in this area.
Applying the FEM and PAR to this chron-
ic pain intervention culminated in the present
curriculum, which was dedicated to integrat-
ed interventions for chronic pain. The curric-
ulum included elements of relational peer sup-
port; exploration of gendered and socio-cultural
aspects of pain; meditation and visualization;
gentle physical exercise and movement; and ad-
dressing issues of power in the medical commu-
nity. While the primary focus was to attend to
the views of the women in group, other goals
were to consider whether participation would
assist in the enhancement of mental health
status; improvement in management of pain;
growth of confidence in activity-engagement
while coping with pain; development of coping
and vocational skills; and improvement in qual-
ity of life through purposeful engagement in ac-
tivities and social relationships.
The recurring themes gleaned from par-
ticipants’ responses suggest that interventions
should support women’s feelings of autonomy
in their interpersonal relationships. There is
also a need to support communication in health
care settings whereby women with chronic pain
feel heard and respected. A number of studies
have begun the work of examining interactions
between medical personnel and individuals
with chronic pain from both provider and help-
seeker perspectives (e.g., Frantsve & Kerns,
2007; Lærum, Indahl, & Sture Skouen, 2006;
Matthias et al., 2010). Overall, there is consen-
sus around how crucial it is that help-seeker in-
teractions with treatment teams are nurturing
and validating.
A strength of this study is that the women’s
voices are at the center of the exploration of
chronic pain. Additionally, what these women
share is an important starting point for further
research that will value and elevate their expe-
riences with regard to chronic pain. While the
current evaluation was based on a small num-
ber of participants, the results showed prom-
ise for expanding standard medical interven-
tions and supported the benefit of integrated
approaches found in previous studies. Culmi-
nating with the preparation of a group curric-
ulum (a researcher-participant collaboration),
researchers acknowledged and validated wom-
en’s experiences in ways not traditionally found
in medical treatment settings. While the wide
range of responses from participants did not
always make for easy evaluation of curricu-
la effectiveness, it did support the goals of the
approach, which were to validate individual ex-
periences and change processes.
In addition to skill-based components, the
intervention incorporated additional elements
that responded to multiple identities of partici-
pants as well as multiple influences that shape
their lives as guided by the feminist ecologi-
cal model. These areas, unique to the inter-
vention, are recommended for future projects.
While some elements of the curriculum are un-
usual in integrated care, it is clear that there is
a need to go beyond the exclusive use of med-
ical intervention and CBT to incorporate addi-
tional methods in an effort to alleviate chron-
ic pain. Further development and evaluation
of this group intervention with a larger number
of women may inform overall effectiveness and
additional changes for the curriculum, and may
help identify which specific approaches corre-
spond to positive improvements among women
with chronic pain.
Action ReseARch in Developing A chRonic pAin gRoup 13
Limitations and Future Research
One limitation of this study is that group
sessions were not recorded and group session
notes were dependent on group leaders’ recalls
and distinct observations about issues of im-
port that occurred in the group. Group lead-
ers’ session notes differed in length, depth, and
style, and each leader’s particular lens likely im-
pacted the data that emerged from each group
session. Group recordings would have offered
an opportunity for multiple researchers to pull
themes and debrief as a group about salient
observations. Additionally, the decision to in-
clude women who were not only burdened with
chronic pain but also diagnosed with a mental
health condition likely enriched the study; how-
ever, these women’s aggregate experiences of
chronic pain and mental illness were not direct-
ly examined outside of the general questions of
mental well-being offered as prompts to all the
participating women.
While the findings in this study will be
helpful in informing the work of helping pro-
fessionals in their interactions with individuals
living with chronic pain, it will be valuable to
design PAR-focused research that examines atti-
tudes of helping professionals regarding aspects
of care provision to individuals with chronic
pain, especially culminating in an intervention
or protocol that enhances the quality of these
interactions. Importantly, research that fur-
ther explores the gendered and power dimen-
sions occurring in interactions between helping
professionals and individuals with chronic pain
will address a dearth of research in this area.
Also, there is a need for investigating ways in
which women can be encouraged to discuss as-
pects of gender and power in group contexts.
Finally, while this study focused on a group of
women in a rural, integrated healthcare setting,
there is likely opportunity to evaluate this group
curriculum among other populations that may
enjoy some benefit (e.g., veterans in recovery
from war injury).
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