The process of change: Listening to transformation in meaning

perspectives of adults in arthritis health education groups

Brenda Ashe

Maurice Taylor

Claire-Jehanne Dubouloz

Key words

Occupational therapy practice, evidence-based

Arthritis

Group practice

Abstract
Purpose. This study explored client experiences in two different arthritis education groups to develop an understanding of meaningful group experiences in the process of change leading to desired health outcomes. Method. A qualitative framework with an
inductive, descriptive, phenomenological method guided the study. Ten participants with rheumatoid or inflammatory arthritis
were recruited. Individual and focus group interviews provided descriptions of experiences. Results. Arthritis education group
experiences led to improved client perceptions of ability to cope with chronic disease through a process of change in feelings,
values and beliefs known as meaning perspectives. The change in meaning perspectives occurred through perceptions about
disease, self and illness. Practice Implications. This study provides important insights into the clients process of change in
meaning perspectives that can lead to health behaviors and desired health outcomes. The study demonstrates the use of the
group context as a tool to enable the process of change.

Rsum
But. Cette tude examinait les expriences vcues par des clients ayant particip deux diffrents groupes denseignements sur
larthrite. Le but de ltude tait de mieux comprendre les expriences de groupe significatives face au processus de changement
ayant entran les rsultats de sant recherchs. Mthode. Ltude a t oriente par un cadre qualitatif caractris par une
mthode phnomnologique inductive et descriptive. Dix participants atteints darthrite rhumatode ou inflammatoire ont t
recruts. Des entrevues individuelles et des entrevues de groupe ont permis de recueillir des descriptions des expriences.
Rsultats. Les expriences des groupes denseignement sur larthrite ont entran une amlioration des perceptions des clients
face leur capacit de sadapter la maladie chronique, par lintermdiaire dun processus de changement dans les sentiments,
les valeurs et les croyances dcrits comme des perspectives sur le sens. Le changement de perspectives sur le sens sest produit au
niveau des perceptions face la maladie et des perceptions du soi face la maladie. Consquences pour la pratique. Cette
tude offre une piste de rflexion importante sur le processus de changement de perspectives sur le sens pouvant entraner les
comportements et les rsultats de sant recherchs chez le client. Ltude dmontre que lintervention en groupe est un outil qui
favorise le processus de changement.

t is widely accepted that meaningful experiences can lead

to a sense of well being and life satisfaction and that in
order for occupational therapy interventions to be therapeutic, they must be perceived as meaningful by the client
(Law, 1998; Persson, Erlandsson, Eklund, & Iwarsson, 2001;
Townsend, 1997). Attempts to quantitatively measure the link
between arthritis interventions and improvements in perceptions of ability to cope with and manage disease symptoms
have not yielded significant results (Fries, Koop, Sokolov,
Beadle, & Wright, 1998; Lorig et al., 1989). The purpose of
this study was to explore client experiences in arthritis health
education groups and how these experiences affect change
leading to desired health outcomes.
Change was operationally defined as the clients willingness and motivation to engage in health behaviors which
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could lead to desired health outcomes. Desired health outcomes were defined as a decrease in symptomatology of joint
related pain, stiffness, immobility and deformity that would
enable occupational performance. Client experiences were
operationally defined as the knowledge and understandings
that were constructed by the client to make sense of the content and context of the education session (Simon, 1992).
Groups were defined as 3 or more participants with a group
leader or facilitator providing information and/or skills
related to rheumatoid arthritis and inflammatory arthritis
and its management.

Literature review
Arthritis health education program outcomes are of interest
in Canada due to projections that the number of people diagVOLUME

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nosed with arthritis in Canada from 1991 to 2031 will
increase from 2.9 million to 6.5 million respectively (Badley
& Wang, 1998). The largest increase will be among those 45
years and older (Badley & Wang, 1998). Increased costs
related to increased numbers of individuals with arthritis
have led to the promotion and evaluation of outcomes
following arthritis health education interventions.
The literature review begins with an outline of the
contribution of quantitative research to understanding outcomes related to arthritis health education interventions. A
review of qualitative research explores the transformational
process towards change leading to desirable health outcomes
within occupational therapy interventions. This is followed
by a review of transformative learning theory and its usefulness as the conceptual lens for this study.

activity were used as outcome measures (Bell et al., 1998).

Change or improvement scores on the SASES, the KQ and
reported morning stiffness relative to disease activity were
noted in the experimental group at the 6 week and 12 week
assessment when compared to the control group. Although a
small change was noted, it could not be well explained
through quantitative measurement of short term health education interventions (Lineker, Badley, Hughes, & Bell, 1997).
The results of these quantitative studies indicate that
education about arthritis produces a change towards health
outcomes by improving knowledge about the disease and
self-management techniques. Efforts to measure clinical
changes over time using psychometrically strong instruments
failed to demonstrate statistically significant outcomes
related to the clients willingness to participate in health
behaviors, although some improvements in arthritis symptoms were noted. There is some recognition of change as a
process that occurs during an education session despite the
fact that cumulative group scores may not be statistically
significant at various points of evaluation.

Quantitative research in health education

A key assumption of health education programs for people
with arthritis has been that providing disease knowledge and
management skills improves health status. Improvement in
health status has been defined in the self-efficacy literature as
decreased pain, disability and depression (Bandura, 1997;
Lorig et al., 1989). Immunology studies have described a psychobiological link between stressful life events and deterioration in the immune system ultimately affecting health status.
Improvement in immune system function has been linked to
feelings of social support and controllability in disease management (Linton & Skevington, 1999). This evidence generated interest in program features that may impact improved
health outcomes. Program elements such as chronic disease
management, risk-management, and self-efficacy have been
valued for their relationship to health outcomes (OBrien,
1995). For example, Fries, Koop, Sokolov, Beadle and Wright
(1998) examined seven health education programs in the
United States for people with arthritis and other chronic
diseases. They found that the demand for physician visits,
medical visits, and self-reported pain levels decreased by as
much as 20% for people who had attended health education
programs that focused on disease self-management.
Another area of research interest has been the identification of modifiable factors such as pain, disease activity and
level of disease knowledge that have been related to improved
health outcomes through education sessions. Bell, Lineker,
Wilkins, Goldsmith, and Badley (1998) examined the effect
of a physiotherapy intervention involving a 6-week education
program combined with treatment for people with rheumatoid arthritis (RA). The 127 participants of the study were
randomized to an experimental group for immediate
intervention or to a control group and wait listed for 12
weeks consistent with usual practice. The Stanford Arthritis
Self-Efficacy Scale (SASES), the ACREU Rheumatoid
Arthritis Knowledge Questionnaire (KQ), a visual analog
scale (VAS) for pain assessment and an assessment of disease
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Qualitative approach to study change

in meaning perspectives
Mezirow (1990) originally studied learning in adulthood as a
transformative process. He defined learning as the process of
making new or revised interpretation of the meaning of experience, which guides subsequent understanding, appreciation
and action (Mezirow, 1990, p.1). Transformative learning
involves a change in personal feelings, beliefs, and values
known as meaning perspectives. Dubouloz et al. (2000)
referred to the growing recognition of how a clients meaning
perspectives impact health related behaviors and the process
of change in meaning perspectives that may be required to
manage chronic health related conditions such as arthritis.
Dubouloz et al. (2000) used a grounded theory approach
to explore the process of transformation in meaning perspectives leading to disease adaptation for several groups of
clients in rehabilitation. Changes in meaning perspectives
related to occupational performance issues with work, rest,
leisure and personal health were explored during treatment
that involved strategies, knowledge and skills for managing
disease symptoms during activities. In-depth interviews
captured the clients voiced experience of their process of
transformation towards balancing occupational components
by recording attitudes, beliefs, judgments and behaviors
before and after the occupational therapy intervention.
Dubouloz, Laporte, Hall, Ashe and Smith (2004) found
the transformative learning process involved a deconstruction and reconstruction of meaning perspectives for clients
with rheumatoid arthritis. The deconstruction of meaning
perspectives occurred when the illness context created a conflict with the clients previous meaning perspectives related to
self-definition such as independence and self-respect.
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Reconstruction of meaning perspectives occurred through
rehabilitation as learned behaviors and knowledge helped the
client transform meaning perspectives that could reestablish
occupational balance (Dubouloz et al., 2004).

Adult learning theory and

transformation of meaning perspectives
Adult learning theory provides a context for the exploration
of the process leading to the clients desired health outcomes
based on two implicit principles of learning. The learner
participates in constructing knowledge and learning is an
interactive process of interpretation, integration, and transformation of experiences by the learner (Merriam, 1993).
Transformative learning is an adult learning theory that
offers a theoretical framework to understand how change is
manifested for the client with arthritis seeking to manage
disease symptoms. Concepts of individual process, meaning
from experience and empowerment help to provide a deeper
understanding of how the client constructs meaning
perspectives about the disease.
Transformative learning theory acknowledges individual
process and the role of the clients frame of reference in determining personal meaning and perceptions of experience.
Mezirow (1994) suggests that symbols and language are a
persons frame of reference and may be culture specific. They
may imply unspoken feelings, understandings or expectations. An example of a symbol in our culture would be a
hospital. When entering a hospital people have expectations
of the care they will receive and the type of people who work
there even before being seen by anyone. Meaning perspectives frame expectation by mirroring symbolic models so that
the meaning of new experiences can be evaluated and interpreted. The importance of meaning perspectives can be seen
when individuals find themselves in unfamiliar situations or
experiences. They must rely on familiar ways of thinking,
being and understanding as a way of interpreting the new
experience. The role of experience in learning can be appreciated from the standpoint of its importance in confirming
or broadening expectations of how things are supposed to be.
An assumption that underlies transformative learning
theory is that meaning exists within the learner and that
interaction and communication with others validates the
meanings that the learner attaches to experiences (Cranton,
1994). Mezirow (1991, 1994) suggests that in transformative
learning theory the client is central to interpreting the meaning of the disease experience and that the reflection process
can lead the learner through a transformation of meaning
perspectives or belief systems. An example of this may be the
beliefs and feelings a client has about rheumatoid arthritis
based on previous assumptions. The client may have believed
that RA is a short term condition based on assumptions that
new medications and help available through the health care
system could stop the disease. During health education
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sessions the client may see others with the disease and reflect
on techniques discussed to decrease symptoms. Reflection on
experiences within the health education sessions may lead to
transformation of meaning perspectives or belief systems
about the chronicity of the disease and its need for ongoing
management.
Mezirow (1990, 1991) and Cranton (1994) describe the
role of transforming meaning perspectives to notions of
learner empowerment. Learner empowerment is both a goal
of and a condition for transformative learning (Cranton,
1994, p.72). Transformative learning theory acknowledges
the position of power allotted to the knowledgeable facilitator to support or promote the individual and complex
process of change in meaning perspectives about arthritis.
For example, Cranton (1994) describes the role of a group
facilitator in creating the right environment for self-appraisal
and self-examination by providing the learner with feelings
of confidence, security and support from others.
Transformative learning theory explains how meaning
perspectives can influence the clients meaningful experience
during the therapeutic interventions such as arthritis health
education groups. The transformative learning cycle begins
with a disorienting dilemma such as diagnosis of arthritis.
This may lead to an examination of personal meaning
perspectives about this disease through a reflective process
that involves an exploration of new ways of being and building competence in new roles. This process may require time
before the learner reintegrates new assumptions and perspectives into their social context (Sinnott, 1994).
Using the conceptual lens of transformative learning
theory, the main research question was: What are the experiences of clients in arthritis education groups and how do they
transform knowledge and skills provided in group sessions
into desired health outcomes? Three supporting questions
were identified: 1) What are the clients understandings of the
knowledge and skills presented?; 2) What are meaningful
group experiences to the client in his or her learning process
towards change in health behaviors?; and 3) Are there common experiences or patterns of experience among clients
participating in two different health education groups?

Method
A qualitative framework with an inductive, descriptive,
phenomenological method guided the study. Phenomenology
is the exploration of phenomena in the human experience
(Giorgi, 1997). One discriminating feature of phenomenological methods is the relationship of the researcher to the
data (Creswell, 1994). In this study, the primary researcher
was the participant- observer. This method provided opportunity to share and experience the phenomena of arthritis
health education groups with clients. The researchers observations and reflective journal became part of the data. This, in
addition to data from individual and focus groups interviews,
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provided extensive descriptions that captured the meaning of
group experiences to the personal lives of participants.

controlled in the study. There were 2 males and 8 females.

Age ranges varied with 2 participants in their forties, 6 in
their fifties and 2 in their sixties. Disease duration ranged
from 1 year to 30 years. Four participants had the disease less
than 5 years. The 2 youngest participants were among these
4. The language of choice in everyday living for all participants was English. All participants had attended one or the
other arthritis education group within one year of the study
interviews. None of the study participants from the aqua
therapy program had attended a Taking Charge of Your
Arthritis group in the past.

Participant selection and characteristics

Presentation of the research proposal to healthcare professionals facilitating arthritis education groups in the community, provided support and permission for the researchers
participant observation fieldwork in two arthritis health
education groups. Following observation of a group session,
a description of the research was given to the group and a
request for study participants was made. A consent form
clearly outlined the purpose of the interview, focus group, the
expectations of participants and the assurance of ethical
conduct and preservation of anonymity by the researcher.
Participants were purposefully sampled using the following criteria: (1) availability; (2) over 18 years old; (3)
diagnosed with rheumatoid arthritis or inflammatory arthritis; (4) willingness to describe, in English, the experience of
participation in the health education group; and (5) willingness to participate in a follow-up interview and focus group.
Morse (1994) suggests that 6 participants are acceptable,
however, 10 participants were sampled in this population to
allow for adequate detail and depth in exploring meaning
from experiences. Participants were interviewed from two
separate arthritis education groups to provide an opportunity to explore common experiences or patterns of experience that may have existed between participants of the two
groups. Five participants were selected from each group.
The first education group was called Taking Charge of
Your Arthritis. The arthritis education sessions were a total of
6 weeks duration with various topics every few weeks. The
goal of the group was to facilitate understanding of difficulties associated with inflammatory arthritis and to address the
means to manage and improve quality of life for the individual. The group was facilitated at various points within the 6
weeks, by a physiotherapist, occupational therapist or social
worker from the Arthritis Society Consultation and
Rehabilitation Service. Group members were diagnosed with
RA or inflammatory arthritis and may or may not have taken
this or other education sessions in the past. Sessions took
place in a Victoria Order of Nurses (VON) Support Services
clinic in Eastern Ontario.
The second group was a hydrotherapy exercise group
referred to in this study as the aqua therapy program. The
program of pool exercises was facilitated by a former
Arthritis Society staff physiotherapist. The goal of the group
was to promote exercise in warm water to decrease stress to
the joints. There were two sessions held weekly by this physiotherapist, however, sessions were held each day of the week
and two evenings a week throughout the year by others
trained to lead the exercise program.
There were several factors characterizing the 10 participants who comprised the purposive sample. Gender was not
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Data collection procedures

Participant observation fieldwork provided an understanding of the group context. It provided direct experience with
the group session congruent with an inductive approach. As
well, the fieldwork offered an opportunity to observe things
that the participant may not observe or be willing to articulate (Patton, 1987). Detailed field notes were recorded on a
form developed by the researcher for collecting descriptive
information based on the work of Creswell (1994) and
Streubert and Carpenter (1999). The form included areas for
descriptions of the physical space, participants, events,
activities, time and researcher feelings. The researcher was a
participant observer with minimal interaction with group
members (Creswell, 1994; Streubert & Carpenter, 1999). The
groups were small and made aware of the researchers presence. Personal reflections on the session were recorded in the
researchers journal.
There were two types of interviews used to gather data
for analysis and interpretation. Individual interviews
provided extensive data from each participant and a focus
group interview provided further discussion and insights on
data received through individual interviews. Individual
interviews were conducted at a separate time following the
participant observation fieldwork. The interviews were openended, semi-structured and lasted 45 minutes to 1 hour.
Demographic information recorded for all participants
provided opportunities for the researcher to learn more
about the participant and understand the context of the
group experience for each person. The introductory statement to frame the intent of the interview was please describe
your experiences in the education group. Data collection
proceeded until saturation was achieved. This is described by
Streubert and Carpenter (1999) as the point at which no new
themes or essences are emerging and the data are repetitive.
Saturation was achieved when participants repeated their
group experiences and despite further probing no new data
were obtained. Interviews were recorded through audiotapes
and transcribed shortly after each interview.
A focus group was scheduled for a one and a half hour
session following completion of all initial interviews. Patterns
that emerged from the data were presented with supporting
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data from individual interviews with the intent of gathering
opinion and further thoughts from participants. This discussion was followed by more directed questions related to data
obtained in the individual interviews and participant observation sessions (Morgan, 1997; Steward & Shamdasani, 1990).
The 10 audio taped individual interviews and the audio
taped focus group interviews were transcribed verbatim.
Field notes from the participant observation sessions were
written out and any reflections on the notes were included in
the order that they were originally made. The researchers
personal journal and memos remained in their original format for use in analysis.
Trustworthiness and internal validity of the data were
established by consistent use of methods of questioning in
interviews to help ensure pure descriptive data. Transcribed
interviews were returned to participants. Additions and deletions of content by the participant were included in the
revised transcription. Any clarifying comments by participants were noted. In addition, participants in the focus group
had the opportunity to review, discuss, clarify and expand
upon the findings from the individual interviews.
Data triangulation was used to provide a more complete
picture of the findings and to provide dimension to the
participants described experiences in arthritis education
groups (Streubert & Carpenter, 1999). Data were collected at
more than one site, in two different types of arthritis education groups and through various methods such as participant
observation, individual and focus group interviews to provide more depth to this inquiry.

Data analysis
Data analysis occurred in two phases guided by phenomenological methods (Creswell, 1994; Streubert & Carpenter,
1999). In the preliminary phase of analysis, participants
descriptions were read and re-read to acquire a feeling for
their experiences. Phrases and statements relating to group
experiences were recorded from all interviews and repeated
ones were combined. Examples of phrases included the
following: I became depressed, I was the youngest in the
group; just to know that I will not end up in a wheelchair; I
couldnt deal with listening to others talk about their pain.
Meanings were formulated from significant phrases and
statements but remained close to the participants descriptions. For example, the phrases cited earlier appeared in a
formulated meaning which included initial feelings about
belonging in the group revolving around perceptions of age
difference, level of disability and level of pain at the time of
the group education session. Themes were formed by
combining voiced meaningful experiences. These themes
were traceable to the original participant descriptions for
validation purposes. For example, the formulated meaning
just described was incorporated under the theme restructuring illness identity. A final validation step was to present and
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discuss emergent themes in a focus group to ensure the

analysis represented the meaning of participant experiences.
The second phase involved a return to concepts found in
transformative learning theory. Concepts such as individual
process, meaning from experience and empowerment were
applied to the data to provide a more in-depth analysis and
interpretation of the three themes that emerged from the
individual and focus group interviews.

Results
Arthritis is a powerful disease that has the capacity to bring
those who experience symptoms of extraordinary pain,
fatigue, inflammation and deformity to a life of silence and
isolation. Participants descriptions were viewed through the
context of transformative learning theory. The disorienting
dilemma of disease symptoms led participants to the health
care system, a symbolic model for the management of disease. Within this symbolic model was the belief in a cure or a
relieving of symptoms for improved function. The results
section represents the analysis and interpretation of voiced
group experiences of 10 study participants who shared their
struggle for disease management on a personal and a clinical
level. Three themes evolved from significant statements and
subsequent formulated meanings taken from the individual
interviews and the focus group interview.
The first theme was labeled validation through connection. It involved the experiences of participants with health
care professionals, participants attitudes, expectations and
seeking validation and legitimacy. The catalyst for this theme
was the inner discomfort with arthritis as a chronic disease.
Previously healthy participants described not being able to
function as they did before. One participant described the
moment she could no longer cope:
A year ago I became very tired and one day I broke down
in the office, I couldnt stop crying and I became hysterical.
The arthritis was in a flare up big time. I had never missed
a day of work because of my arthritis. I fought it and went
to work but this time, I couldnt fight it anymore.
Expectations and beliefs about getting help to alleviate
arthritis symptoms were also challenged. One participant
described her frustration:
Id go one week (to my doctor) and shed say oh you are
puffy, did you read this paper. Well I knew that stuff. I
didnt want a paper on arthritis. I wanted help for I
wanted her to do something about the problem.
Participants disease symptoms disrupted daily function
and led them to seek help in order to make sense of what was
happening. Many participants recounted initial interactions
with the health system that led to management strategies that
were in conflict with their expectations. For many participants, this was the point at which they were referred to or
sought out the arthritis health education groups.
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The knowledgeable group facilitator was identified by all
participants as an important resource for arthritis information and symptom validation. One participant described feelings of support and legitimacy from her group facilitator:
She was the first person I could really talk to about my
arthritis who really believed me that I wasnt just putting
on a show about the pain, that the pain was real. Thats
what I needed to know that someone understood and that
I wasnt just asking for sympathy, that I was in a lot of pain.

help someone have an easier journey than youve had, it

makes you feel good inside. There was an importance placed
on the ability and need to help others with the disease. All
participants shared their experiences of helping someone else
in the group in small ways such as assisting someone to
understand an exercise, and in larger ways such as starting up
an additional support group as one participant did.
Awareness and sensitivity to others and being able to contribute to someones understanding also led to an improved
image of the self as managing the disease on some level.
The final theme of perceptions of self and disease symptoms was characterized by participant descriptions of living
with pain, feelings of power through disease knowledge, and
reflections for action or inaction. The presentation of new
skills and strategies for disease management within the groups
provided opportunities for participants to utilize and give
voice to changing disease perspectives. Participants all stated
that although pain with arthritis was not acceptable to them,
it was constant to varying degrees. They had to learn to live
with a certain level of pain. As one participant said: What
choice do you have if you want to live, you want to do things
and get some enjoyment out of life, youve got to keep going.
Participants cited isolation as a strategy that allowed
more personal control during peak periods of pain with
arthritis. One participant admitted that by isolating herself it
helped to decrease expectations others would have of her
because she would not be expected to socialize or participate
in activities. Another participant stated clearly that when
youve got pain its the only thing that sticks in your head.
Thats the only thing that matters. She also stated that participation in education groups would not be possible with a
level of pain that was totally consuming. Knowing about and
having access to strong medication when the pain became
unmanageable was important to most participants as a way
to feel more in control of disease symptoms. For one participant, this meant maintaining a very close relationship with
her physician through regular visits. Another participant felt
strongly that he did not wish to return to his physician whenever he was in extreme pain. He knew which medications
were the most powerful in managing his pain and he kept a
small amount available for when he felt he needed it. He
stated he felt more at ease knowing he was in control.
Two participants in the focus group with 15 and 18 years
of experience with arthritis expressed how learning of new
medications in education groups gave hope that there was
still something that could be tried during extreme periods
of pain. Participants in the Taking Charge of Your Arthritis
group described the importance of medication presentations
but admitted that their observations and perceptions of other
group members approached to symptom management led to
reflection on personal coping. One participant observed that
a woman her own age was living with the disease and
appeared happy. I thought that was more the thing I would

Participants felt that connecting with others and knowing they were not alone, validated their symptoms. They
expressed that at times the loneliness to deal with disease
symptoms was gripping. Factors such as not feeling understood, doubting the legitimacy of symptoms, mixed with
hoping the disease would just go away if only the right
medication was given, all contributed to expressed loneliness.
Participants identified the importance of the group in relieving these feelings. One participant described how he felt less
depressed knowing there were others suffering as he did.
Connections with an arthritis authority, connections with
others and learning more about disease provided validation
of self and legitimacy of symptoms and fears as normal.
The second theme, called restructuring illness identity,
was a theme that involved restructuring beliefs about self and
disease, helping others and comparing self to others. The
motivation for gaining an understanding of arthritis in relation to self began with validation. Arthritis education group
experiences challenged preconceived notions of illness and
identity by providing opportunities for participants to reflect
and make decisions on how they would restructure their own
illness identity. One participant believed that only the elderly
developed arthritis. Prior to the group, she felt depressed and
so unlucky to have it. Being a part of a group of similarly aged
members opened my mind to well youre not the only one
being sick at that age. So take it, accept it.
In both health education groups participants judged
their level of illness by comparing themselves to others. All
participants felt the most meaningful group experiences, at
least initially, were seeing others worse off with the disease.
One participant bluntly stated: It makes you feel good to
know that youre not as bad as that guy. Participants
expressed feelings that gaining perspective on their disease
symptoms in relation to others in the group provided an
element of hope that they could still do something to
prevent the symptoms from getting worse. Participants in
both groups identified behavior of whiners and complainers as a benchmark for their own perceived level of coping.
Participants compared their own skill development, selfconfidence and actions as normal coping while the actions of
whiners and complainers was considered unproductive
disease coping. Feeling useful by helping others in the
group was meaningful to all participants. One participant
described disease management as a journey and when you
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emulate, that I would try to do and that was more the way I
initially planned on handling the disease. Thats still the way
Id like to handle it, she said.
One participant stated that she still wanted to find a medication that could rid her of arthritis symptoms as it had done
it the past and felt discussions on exercise for symptom management were unmotivating. Another participant stated that
she only began a regular exercise routine when her body could
not handle the arthritis medications. She realized through
group experiences that her disease was long term. She stated:
I got very discouraged when I heard somebody say oh
Ive been coming (to the group) for 6 years and Ive been
coming for 8 years because I thought in my mind when
I started oh this will be for 2 to 3 months. You know, I
didnt realize it looks like Im going to be doing that for
the rest of my life.
In summary, participants descriptions of meaningful
group experiences expressed through the three themes of experience provided an in-depth and richer understanding of the
impact of arthritis on individual lives. The process of change in
beliefs and attitudes about the disease and its management
could be seen through participant descriptions of group experiences across two different arthritis health education groups.

Discussion
The discussion will present the significant contribution of
phenomenological methods and transformative learning theory in answering the overarching research question: What are
the experiences of clients in arthritis education groups
and how do the clients transform the knowledge and skills
provided in the group session into desired health outcomes?
Extensive descriptions provide a lived quality and significance to client experiences, providing a richer and deeper
understanding of them (van Manen, 1998). Listening to
participants describe their personal struggle with a chronic
disease was both humbling and enlightening. The grouping of
significant statements and phrases from interview data into the
three themes of validation through connection, restructuring
illness identity, and perceptions of self and disease symptoms
represented participants voiced meaningful group experiences
that were common across two different arthritis education
groups. Participant descriptions, when brought together under
the lens of transformative learning theory, provided valuable
insights to the process of change that can occur within the
group context leading to desired health outcomes.

Validation through connection

The contribution of validation experiences to changes in disease perspectives could be seen through the concept of
empowerment found in transformative learning theory.
Naming the symptoms and recognizing the legitimacy of
them provided participants with a sense of empowerment
and control in seeing the disease as separate from self and the
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symptoms as problems that could be worked on. Mezirow

(1991) suggests that problem identification is an important
stage which leads to an openness for new learning.
At the onset of arthritis symptoms and decreased function, participants described their frustrations with the health
care system: I was going to my doctor every three days or so.
I wanted a doctor to do something. Soderberg, Lundman and
Norberg (1999) found clients with fibromyalgia experienced
loss of credibility for their illness when complaints of pain and
loss of function were minimized. Loss of credibility increased
feelings of uncertainty regarding legitimacy of disease symptoms causing clients to internalize symptoms as something
that may not exist for anyone else (Soderberg et al., 1999).
Participants found that interactions with the group facilitator and other group members provided legitimacy of
symptoms. All participants described the importance of a
knowledgeable group facilitator as an important resource for
disease information and symptom validation. She (group
facilitator) helped me understand the pain I was experiencing
and to only do as much exercise as I could.
Participants felt that seeing others with the disease and
knowing they were not alone validated their symptoms.
Dildy (1996) found that clients in rheumatoid arthritis treatment sessions reported a need to know that their symptoms
were not in their minds. Understanding that youre okay,
(Dildy, 1996, p. 179) clients were able to implement strategies
to manage disease symptoms.

Restructuring illness identity

In transformative learning theory, practicing new ways of
being has been cited as an important element of change in
meaning perspectives that can lead to motivation to engage
in health behaviors (Sinnott, 1994). Group experiences
challenged preconceived notions of illness and identity by
providing opportunities to reflect and make decisions on
how illness identity would be restructured. Study participants described changes in how they saw themselves and
their disease as they compared themselves to others in the
group through disease severity, coping behaviors, and ability
to share knowledge.
All participants described someone in their group who
was worse off with the disease then they were. This subjective observation became a reflective tool used by participants
to redefine perceptions of their own disease severity.
Participants also described the behavior of whiners and
complainers as poor disease coping. Whiners and complainers helped participants reflect on their own coping
behavior and redefine disease identity by this benchmark.
Sharing ideas or experiences with group members provided
participants with a sense of well being and opportunities to
reflect on disease self management.
Participants found that gaining perspective on their disease severity provided an important element of hope that
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they could still do something to prevent symptoms from
becoming worse. Experiencing a sense of hope becomes a
valuable motivator in learning new skills for symptom management (Dildy, 1996).

exploring client experiences in health education groups using

qualitative approaches and phenomenological methods have
not been found in the research. This study represents the first
exploration of a group health intervention to further understand the process of transformation in disease perspectives.
Transformative learning theory was used as a conceptual lens
to broaden and deepen understandings of clients voiced
meaningful experiences within arthritis group interventions.
Using similar methodology in the exploration of other health
education interventions could strengthen understanding of
process and outcome for clients with chronic disease.

Perceptions of self and disease symptoms

Participants described group experiences that helped them to
utilize, question and reflect on new knowledge about arthritis management within changing disease perspectives.
Participants described pain, fatigue and fear of incapacity as
a prime a motivator to explore symptom management strategies. They also described action versus inaction behaviors.
Motivation or desire to incorporate strategies for symptom management related to the participants expectations
and experiences with medications that decreased pain and
inflammation. One participant described her hope of finding
a medication that could rid her of symptoms as it did in the
past. She only reverted to exercises when her joints became
too stiff to function. I definitely understand that exercise is
going to help me move better and I realize I need to do the
exercise but Im not acting on it. Another participant
described her need for regular exercise because of her bodys
intolerance to arthritis medications. All participants
described discussions on medications and sharing of information with others as a meaningful group experience. These
discussions provided a sense of hope that there could still be
a medication to try that would relieve symptoms.
Assumptions that the clients own ability to relieve pain
to improve function (through exercise and joint protection
strategies) will lead to desired health outcomes are the basis
of many arthritis self-management programs and selfefficacy theories (Linton & Skevington, 1999). Participants in
this study, however, described a change in their perception of
help available from medications as a motivating factor in
considering alternative strategies for disease management.
As one participant so aptly stated knowledge is power and
understanding the benefits and limitations of current medications and just being informed, provided participants
with a greater sense of control in how they chose to manage
disease symptoms.

Conclusion
This study exposed the clients complex reality of adjusting
and living with a chronic disease. Arthritis education groups
were linked to desired health outcomes through a process of
change in meaning perspectives about self and disease management. One of the most significant learning outcomes
from group experiences occurred when meaningful experiences defined new directions and understandings that
encouraged participant reflections on coping strategies that
could lead to a more acceptable and livable relationship with
disease symptoms.
The use of transformative learning theory to explore the
process of change towards disease management has implications for occupational therapy practice. Learning to manage a
new diagnosis involves a process of exploring old and shaping
new disease perspectives through reflection of previous
disease experiences and understandings. The therapist can
facilitate the exploration of disease perspectives and new ways
of living by providing an accepting and encouraging environment for beliefs and attitudes to surface while encouraging
reflection. This theory emphasizes the back and forth movement between what is learned and what is integrated as
personally meaningful (Boyd & Fales, 1983). This may explain
client resistance to practicing health behaviors that would lead
to improved health outcomes. Resistance could be viewed as a
necessary time giving strategy for the client who is having
difficulty with changing disease perspectives.
Phenomenological methods of data collection and
analysis are valuable in qualitative research for exploring
process. The extensive amount of data collected, including
researcher participant observation, allowed a richer understanding of the human experience in arthritis health education
groups. It could be seen that the process of change in disease
perspectives and restructuring of illness identity were uniquely
influenced by group content and context but not bound by
the time frame of one particular health intervention. The
contributions of the group context did not lie in the measure
of health outcomes but in the movement towards them.

Limitations and further research

Limitations of the study included a purposive sample of
participants chosen for the study and findings that related to
clients diagnosed with rheumatoid and inflammatory arthritis attending arthritis education groups. Another limitation
of the study is that health outcomes were not measured. The
process of transformation leading to desired health outcomes
requires further exploration. The literature does support
findings related to transformative process and restructuring
identity for chronic health conditions such as diabetes
(Patterson, Thorne, Crawford, & Tarko, 1999) and myocardial infarction (Dubouloz, Chevrier, & Savoie-Zajc, 2001;
Johnson & Morse, 1990; Sutherland & Jenson, 2000). Studies
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Acknowledgements
A special thank you to the study participants who were so
willing to share their feelings and attitudes about their disease
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in the hope that others would benefit from their experiences.
Thank you to Marion Russell Doreleyers and Judy Barber,
both physiotherapists, for their interest and support for the
study and for facilitating access to the community groups.

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Authors
Brenda Ashe, MA, BScOT, OT Reg. (Ont.) is an occupational therapist, The Ottawa Hospital, General Campus, 501 Smyth Road,
Ottawa, ON K1H 8L6. E-mail: bashe@ottawahospital.on.ca
Maurice Taylor, PhD, is Professor in the Faculty of Education at the
University of Ottawa, ON.
Claire-Jehanne Dubouloz, PhD, OT Reg. (Ont.) is Associate
Professor, Occupational Therapy Program, Director, School of
Rehabilitation Sciences and Associate Dean, Faculty of Health
Sciences, University of Ottawa, Ottawa, ON.

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