RESEARCH PAPER

Meaning perspective transformation following stroke: the process ofchange

DOROTHY KESSLER1, CLAIRE-JEHANNE DUBOULOZ2, REG URBANOWSKI3 &

MARY EGAN2

1Occupational Therapy Service, Bruyere Continuing Care, Ottawa, ON, Canada, 2Faculty of Health Sciences, School of

Rehabilitation Sciences, University of Ottawa, Ottawa, ON, Canada, and 3Universities and Adult Learning, Ministry of

Advanced Education, Employment and Labour, Regina, Saskatchewan, Canada

Accepted August 2008

AbstractPurpose. Transformative Learning in an educational theory that posits that individuals learn and grow when their meaningperspectives (frames of reference for interpreting an experience based on knowledge, feelings, values and beliefs) arereformulated following a critical event. This theory has become quite influential in the exploration of adaptation to chronicillness. This study explored whether the change that occurs following stroke follows a process similar to transformativelearning.Method. Grounded Theory approach was used to explore changes in meaning perspective among 12 people who weremembers of stroke support organisations, had a stroke at least 1 year prior to the study and described themselves as viewinglife positively following stroke. Constant comparison analysis of interviews with these individuals was used to explore theirexperience following stroke.Results. Meaning perspective transformation occurred with four factors contributing to transformation: triggers, support,knowledge and choices to action. A substantive grounded theory of the process of meaning perspective transformationfollowing stroke is presented, which illustrates the interaction of these contributing factors in initiating and facilitating thetransformation process.Conclusion. Transformative learning can offer insight into how people who have experienced stroke learn, rebuildcompetence and re-engage in valued activities.

Keywords: Stroke, transformative learning, grounded theory, rehabilitation

Introduction

Stroke is a major cause of disability, disrupting the

lives of those who experience it. Studies indicate that

many stroke survivors continue to experience de-

pression [1,2], activity limitations [3,4], and reduced

quality of life [3,5,6] despite the services provided.

More knowledge of how people who have

experienced stroke adapt, find meaning and reshape

their lives is needed to assist in developing

effective interventions and resources. Transformative

Learning Theory [7] offers a framework for under-

standing and facilitating change in how individuals

living with chronic illness or disability ascribe mean-

ing to experiences and therefore may have implica-

tions for stroke recovery.

The concept of transformative learning emerged

from Mezirow’s [7] work in the area of adult

learning. Mezirow [7] defines transformative learn-

ing as ‘the process of learning through critical self-

reflection, which results in the reformulation [or

transformation] of a meaning perspective to allow a

Correspondence: Dorothy Kessler, St. Vincent Hospital, Bruyere Continuing Care, 60 Cambridge St. North, Ottawa, ON K1R 7A5, Canada.

Tel: þ1 613 562 4262 ext. 2083. Fax: þ1 613 782 2785. E-mail: dkessler@scohs.on.ca

Disability and Rehabilitation, 2009; 31(13): 1056–1065

ISSN 0963-8288 print/ISSN 1464-5165 online ª 2009 Informa UK Ltd.

DOI: 10.1080/09638280802509512

more inclusive, discriminating, and integrative un-

derstanding of one’s experience’. (p. xvi) Meaning

perspectives are frames of reference for interpreting

an experience based on knowledge, feelings, values

and beliefs [8]. Through critical reflection, a person

reassesses presuppositions on which beliefs are based

and develops new insights on which to base action.

Mezirow [9] identifies the following phases of

transformative learning with the end result being

transformation of meaning perspective: (a) a dis-

orienting dilemma, (b) self-examination of feelings,

(c) critical reflection, (d) recognising that others may

share similar discontent and have negotiated change,

(e) exploration and planning of new roles, relation-

ships and actions, (f) acquiring knowledge and skills,

(g) trying out new roles and actions, (h) negotiating

relationships, (i) building competence and (j) re-

integration into life with new perspective as a basis.

Although these phases are presented as occurring in

a linear manner, the process may proceed in a more

circular and spiraling fashion and may not include all

phases [10].

Examination of current models of adaptation to

stroke and Transformative Learning Theory applica-

tions in the areas of health and chronic illness

demonstrate support for potential application of

Transformative Learning Theory in the area of

stroke.

Models of adaptation following stroke

A number of qualitative studies have been

carried out to explore life post-stroke and

propose models for adaptation [11–15]. Included

in the results of most of these studies is

movement from shock, fear and hope in the acute

stage, to sadness at losses in functional abilities, to

acceptance of the remaining disability and re-

engagement in life with changed abilities. These

studies provide valuable information on the experi-

ences and feelings of people living with stroke but

offer little information about what facilitates

transition from one phase or stage to another. It

appears, though, that multiple comparisons [15],

changes in the perception of the situation [14,15],

movement from hope for total recovery to finding

new meaning and possibilities despite residual

disability [11,14], support from family and friends

[13,14], and taking increasing responsibility for

one’s health [11] may contribute to such adapta-

tion. These findings share similarities with

Mezirow’s stages in Transformative Learning

theory [9]. For example, initial feelings of loss

and fear fit with Mezirow’s disorienting dilemma,

and changes in perceptions and redefining

meaning suggest transformation of meaning

perspective.

Transformation and chronic illness

The process of transformation among people

with rheumatoid arthritis, cardiac conditions,

multiple sclerosis, Type I diabetes, spinal cord

injury (SCI), breast cancer and HIV/AIDS has

been explored in previous studies. A range of

transformation of meaning perspectives has been

uncovered. Shared themes among several of these

studies appear to be transformation of how one

evaluates the self [16–18]. For example, individuals

with arthritis who were receiving home-based reha-

bilitation shifted from a self-evaluation based on self-

reliance, activity and altruism to redefined values

within a self-caring framework [19,20]. Similarly, for

individuals who were receiving rehabilitation follow-

ing severe cardiac events, the importance of trans-

formation of self-definition was a key to adoption of a

new lifestyle that would allow them to care for their

health [16]. In a qualitative study of people with

Type I diabetes, the process of transformation

involved differentiating self from illness and body,

enabling the person to address challenges, maintain

self-integrity and learn new ways of doing and being

[21].

Other studies describe varying yet related concepts

in the transformation process and start to identify

contributors to transformation. Carpenter [22] ex-

plored the experience of people with SCI from a

transformative learning perspective and identified

themes of (a) rediscovering self, (b) redefining

disability and (c) establishment of a new identity.

Establishment of a new identity was facilitated by

realising potential in part through comparison with

others, and positive social experiences. In breast

cancer survivors, self-esteem and well-being have

been associated with self-transformation [23].

Baumgartner [24] observed transformational

learning among individuals living with HIV/AIDS

over a long period of time. Transformation included

increased appreciation of the human condition and

an expanded view of intimacy. Social interaction was

important in this process of transformation. Simi-

larly, Courtenay et al. [25] examined the process of

meaning making following a diagnosis of HIV/AIDS.

They identified a meaning-making process which

included development of new meaning which was

stabilised through opportunities to contribute to the

lives of others, heightened sensitivity to life and being

of service to others with HIV/AIDS.

Stroke is a chronic illness and therefore people

living with the consequences of a stroke may share

similar experiences with those described in the above

studies of transformation and chronic illness. This

study explored whether the change that occurs

following stroke follows a process similar to trans-

formative learning.

Meaning perspective change following stroke 1057

Methodology

A Grounded Theory approach was used as it is a

general methodology for developing theory that is

grounded in data systematically gathered and

analysed [26], and due to its focus on the day to

day life of people, understanding motivation,

action, interaction and how reality is constructed

[27] and its strength in providing a method for

systematic exploration of the potential phenomen-

on of meaning perspective transformation following

stroke.

For ease of recruitment, participants were identi-

fied through community organisations and facilities

that offered programs for stroke survivors.

Semi-structured interviews were used to gather

information related to personal experience of stroke

(Table I). Probing questions were asked to capture

information related to meaning perspectives (feel-

ings, knowledge, values and beliefs) related to

participation, identity and illness, and factors con-

tributing to change following stroke. The interviews

were conducted by the first author, an occupational

therapist with 20 years experience working with

stroke survivors. The interviews were audio taped

and transcribed verbatim. A copy of the complete

transcribed interview was sent to participants for

their review.

Data analysis was completed using the constant

comparative method according to the procedures for

Grounded Theory outlined by Strauss and Corbin

[28]. These procedures included coding (open, axial

and selective), memo writing and constant compar-

ison. Transcribed interviews were analysed line by

line to identify and define key participant ideas,

actions and meanings as concepts or categories.

Initial concepts and categories were then analysed

and grouped during axial coding. In particular,

concepts and categories were grouped to compare

experiences pre-stroke to those post-stroke. Rela-

tionships between categories were identified and

story lines developed, using selective coding. These

story lines were integrated through further examina-

tion of relationships into a substantive Grounded

Theory on the process of transformation following

stroke. Analysis from all of the above steps was

presented to and discussed with the second author

during regular meetings where findings were con-

firmed or further developed.

Results

Twelve participants, 10 men and 2 women, con-

sented to participate in the study. The average age at

onset of stroke was 54 years with a range of 44–74.

Eight of the participants had experienced right brain

strokes, three had experienced left brain strokes and

one reported bilateral involvement. All participants

were able to walk with or without an aid but reported

some limitations in movement and/or balance. Four

participants had deficits in communication. Nine

reported or were observed to have mild-to-moderate

cognitive deficits. The average time since onset of

stroke at the time of the interview was 6.5 years with

a range of 3–11 years.

Meaning perspectives, as frames of reference

for interpreting the dimensions of work, family

role, illness/health, identity, living and recovery,

transformed or emerged following stroke [29]. The

processes of transformation of these meaning

perspectives were interconnected based on

four main contributing factors that moved partici-

pants towards transformation: triggers, support,

knowledge and choices to action. A substantive

Grounded Theory based on these four contributing

factors is presented in this article. Each contributing

factor is considered first separately and then

the interconnections between these factors are

described.

Triggers

Two triggers to the process of meaning perspective

transformation were identified. These were experi-

ence of limitations, and feelings of vulnerability. For

all transformed and new meaning perspectives, the

experience of limitations following stroke was a

trigger, which started the transformation process.

Participants could no longer participate in their lives

as they had done prior to stroke. They were faced

with challenges and the need for assistance from

others.

‘Before the stroke there’s nothing that I couldn’t tackle. I

could tackle anything that came along, you know what I

mean? After the stroke, I’m very limited.’

‘ . . . it [having a heart attack] didn’t hit home as hard as

having the stroke because I had to sort of adapt and do

things differently, or I became more tired.’

Table I. Semi-structured interview guide.

1. Could you tell me about your life before you had a stroke?

What did you used to do? What activities would you do on an

average day?

How would you describe yourself before the stroke?

What did you know about stroke?

2. Could you tell me about what your life has been like since you

had the stroke?

What do you do now? What do you do on an average day?

How would you describe yourself now?

What is your knowledge of stroke now?

1058 D. Kessler et al.

Along with the experience of limitations, the feelingof

being vulnerable was a trigger to start the transformation

process. Feelings of vulnerability were reflected through

concerns about health, having another stroke, the

possibility of death and loss of control.

‘But it wasn’t like there was any pain or anything. You

know, you are just going and going. And then one of the

pipes bursts. Your brain is bleeding and you’re going to

maybe die.’

‘It was the fact that I was absolutely helpless.’

Experience of limitations and feelings of vulner-

ability led participants to start to seek control, and to

examine their definition of self, their approach to life

and the priorities in their lives.

Support

Support received from others, including family,

friends, peers and health professionals, was an

overarching contributing factor that facilitated move-

ment towards meaning perspective transformation.

Support came in several forms: being there, provid-

ing assistance, providing encouragement and moti-

vation, shared experience or belonging, and instilling

feelings of value and competence.

‘As I say, that support, giving me a job that was not just

sanding, it was a little more stimulating.’

‘My daughter she gets a day about every two weeks,

she’ll call me and say, ‘‘Next Wednesday I have the day

off, Dad. It’s father-daughter day. Where’d you like to

go?’’ So I plan where we go, she drives and so we go.’

Support had an impact on work, family role,

illness/health, identity, recovery and living. For

example, participants reported strengthened family

relationships following stroke based on assistance

and encouragement received from them and on

instilled feelings of competence and value as a family

member. This support contributed to transformed

value of family with redefined family role.

Peer support was particularly important for trans-

formation of identity. Peer support developed as a

result of participants choosing recovery-related activ-

ities, which led to connection with others who had

experienced stroke. The opportunity to engage with

others who shared the experience of stroke and

develop a sense of belonging was important for

redefining self with stroke.

‘Someone comes in and says, ‘‘I’m crazy, I keep falling

over all the time’’. And you reassure them that so you

fell down, well we all fell down. Big deal. And it’s not

coming from a professional who didn’t have the stroke.’

‘So it’s a nice feeling when, sometimes when

they [others in swim program] feel that they can’t

quite do it they’ll ask me because we understand each

other.’

Participants’ environments of support enabled

them to seek knowledge and make choices to action

throughout the transformation process.

Knowledge

Knowledge facilitated transformation of values,

beliefs and meaning related to work, family role,

illness/health, identity, recovery and living. Partici-

pants in this study sought knowledge through read-

ing and other sources following stroke to understand

what had happened to them, to learn about how to

prevent another stroke, and to learn about possibi-

lities for recovery and living.

One source of knowledge was the experience of

others with stroke. Knowledge gained through

interaction with others who had experienced stroke

enabled participants to use comparison with others

as a strategy for establishing an optimistic perspective

on their lives. This strategy seemed to involve

reflection on the situations and choices of others

related to their strokes.

‘I saw that amongst the people that I was dealing with.

There were those who said ‘‘Yes, I ‘m going to learn all I

can about what I am doing and accommodate to the best

extent possible.’’ Then there were the people who had

already given up before they had gone out the door of

their hospital room.’

Knowledge seeking appeared to be a way in which

participants could take action and feel a sense of

control over the illness.

‘I’ve done a lot of reading since I had a stroke to try and

understand more about it and what happens to the

brain, what are the limitations that it has.’

Knowledge related to recovery provided hope,

motivation and a sense of control, and helped to

guide choice of activities. Knowledge also offered

evidence for reflection. Through reflection, partici-

pants were able to gain insight into what recovery

and life with stroke meant and to re-examine

priorities. Participants re-examined their priorities

in the areas of illness/health, work and family role.

Knowledge of health risk factors, combined with the

triggers identified above, contributed to a reconfi-

guration of priorities where health became a high

priority, family became more highly valued, and the

value of work decreased.

Meaning perspective change following stroke 1059

‘I think, yes, there was a definite change in my attitude

towards my mortality. I quickly decided that you’re only

here for a limited time so there were changes in my life

and my attitude toward taking care of myself properly.’

‘I probably care more for the family so I’ll put them first

instead of the work.’

Knowledge facilitated transformation by helping

participants gain understanding and a sense of

control, which in turn promoted decision making

and action.

Choices to action

Choices to action facilitated transformation of the

meanings of work, family role, illness/health, iden-

tity, recovery, and living. Participants responded to

their feelings of loss of control imposed by stroke by

seeking control. This was done through making

choices and taking action on these choices. When the

result of such decision-making was a success,

increased competence was felt. This, in turn,

promoted ongoing decision-making and action.

Two of the choices made early on following the

experience of stroke were to seek knowledge (as

described earlier) and to try to recover from the

stroke. Participation in recovery-related activities

increased feeling of competency by providing a sense

of purpose, challenge, stimulation, and feelings of

accomplishment when goals were achieved.

‘After 5 years I’m beginning to be able to use my left

hand more.’

‘It [ongoing recovery] is an important mental part

because it’s nice to see that things are getting better.’

Other choices that resulted in action include acting

on new priorities, choosing a different approach to

life, finding new ways to participate, and engaging

with others who experienced stroke.

Choices to action offered a means for re-establish-

ing a sense of control and building competence, and

therefore were an important facilitator of movement

towards transformation.

The interconnection of support, knowledge and choices

to action

It is important to note that support, knowledge

and choices to action were interconnected in

facilitating movement towards meaning perspective

transformation. There appears to be a cyclical

relationship between knowledge and choices

to action that is enabled by an overarching

environment of support. For example, knowledge

was gained as a result of participants choosing to

seek knowledge and acting on this choice. Partici-

pants then gained more knowledge through their

actions. Support facilitated acquisition of knowl-

edge and enabled action.

These interconnections are further illustrated by

the relationship between the meaning perspective

transformations of recovery, living and identity.

From the knowledge that participants gained about

stroke, they learned that some aspects of their

functional abilities would improve whereas others

would continue to be limited. Participants appeared

to make two choices related to this knowledge

which resulted in the emergence of the meaning

perspective of recovery and the transformation of

living. One choice was to pursue recovery, which

led to ongoing learning, building of competence

and connection with others with stroke. The other

choice involved examination of approach to living

with limitations, where participants were able to

learn about their abilities and limitations and build

competence through participating in valued activ-

ities. Connection with others with stroke, rebuilding

competence and learning about self were all

important for transformation of identity, where self

was redefined to include stroke. The choices and

actions described above were enabled by the

presence of support.

In summary, the process of transformation started

with the contributing factors defined as triggers:

experience of limitations and feeling vulnerable.

Transformation was then facilitated by knowledge,

and choices to action that occurred in a cyclical

manner with support creating an environment

that enabled knowledge seeking and acquisition,

decision-making and action. Figure 1 illustrates

the interconnection of the contributing factors

in the process of meaning perspective transforma-

tion. The outside dashed square represents the

context of the experience of stroke that initiates

transformation. This context includes experience of

limitations and feelings of vulnerability. The factors

of support, knowledge and choices to action that

facilitate movement towards transformation are

represented by squares. The interconnection of

support, knowledge and choices to action is repre-

sented by the overlap of these squares creating a

central square where meaning perspective transfor-

mation occurs. The dimensions of meaning perspec-

tive transformation identified in this study are

located in this central square. Associated with each

of the contributing factors of support, knowledge and

choices to action are the important aspects that each

of these bring to the transformation process. For

example, belonging, value and competence are

associated with support.

1060 D. Kessler et al.

Discussion

The process of meaning perspective transformation

identified provides insight into how participants

underwent transformation of meaning perspectives.

The four main factors that initiated or facilitated

movement towards transformation – triggers, sup-

port, knowledge and choices to action – are

discussed in light of the results of other studies of

the adaptation process following stroke and studies

of meaning perspective transformation in people with

other chronic illnesses.

Triggers

The experience of stroke is sudden and unexpected

and disrupts the lives of those who experience it. In

this study, participants spoke about the experience of

limitations and feelings of vulnerability as a result

of stroke that moved them to action. Other studies of

adaptation following stroke report similar feelings

and experiences. The first theme identified by

Pilkington [14] in her qualitative study exploring

the experience of stroke was ‘Suffering emerges amid

unaccustomed restriction and losses’. Nilsson et al.

[13] describe developmental crisis to be resolved in

their study of people in the first 2 months following

stroke. Themes in these crises include threatened

security, struggle to regain autonomy, and ability to

control the world.

For participants in this study, this experience of

limitations and feelings of vulnerability threatened

their sense of control of their lives. Their meaning

perspectives or ways of interpreting and making

sense of their lives no longer fit with their life

situation. Participants reacted by taking action to re-

establish a sense of control in their lives. These

triggers thereby started participants on the path

towards transformation.

Studies of transformation of people with other

chronic illness also report triggers to transformation

that can be related to feelings of vulnerability, and

experience of limitations. Threatened survival or

feelings of inevitable mortality are reported as

triggers to transformation in studies of HIV/AIDS

[25], cancer [23], and cardiac conditions [16]. In

their study of rheumatoid arthritis, Dubouloz et al.

[20] report conflict between the illness context

(impact on personal control and ability to be

involved in occupations) and part of self-definition

(independence, activity, altruism) as one trigger.

Similar findings are reported among people with SCI

[22] and with Type 1 diabetes [21]. In the study of

people with SCI, an experiential split between the

person’s concept of external and internal selves is

Figure 1. The interconnection of contributing factors to promote meaning perspective transformation with a group of persons with stroke.

Meaning perspective change following stroke 1061

described. The external self represents the experi-

ence of disability, physical changes and sense of loss.

The internal self is the sense of remaining the same

person as represented by personal life history and

experience. For those with Type 1 diabetes, a

threatened balance between self with diabetes and

self wanting to live a normal life is presented. These

three studies speak of the experience of limitations

imposed by illness and the conflict this creates with

the person’s sense of self.

Thus, the triggers to transformation identified in

this study are similar to those found in studies of

transformation of other chronic illnesses. However,

triggers may vary depending on the type of illness

and the person’s experience of it.

Support

Support was integral to the transformation process.

Support came in the form of assistance to accomplish

daily needs and valued activities and in the form of

social support – encouragement and belonging.

Participants received support from family, friends,

health professionals and/or other stroke survivors.

Through this support, participants experienced feel-

ings of being valued, of being competent and of

belonging.

Support has been widely identified in the stroke

literature as an important factor for adaptation

following stroke. Nilsson et al. [13] describe a crisis

to be resolved of ‘intimacy vs. isolation’ where

supportive relationships were identified as important.

The theme of ‘consoling relationships uplift the self’

as identified by Pilkington [14] also relays the

importance of social environment which includes

family, friends and caregivers.

Other studies that explore different aspects of

adaptation following stroke report the influence of

social support on well-being and quality of life

[6,30,31], continuity of self [32], and return to work

[33]. The present study adds to the literature by

describing in more detail the nature of support

needed for transformation following stroke.

Several studies of transformation in people living

with chronic illness also identity support as playing a

role in the transformation process. In her study of

people diagnosed with HIV/AIDS, Baumgartner

[24] identifies social interaction as integral to the

transformative learning process. Through social

interaction, people realised they were not alone and

they had control over the disease. A common source

of support was a support group. Support groups not

only provided support and encouragement; but also

the opportunity for relational discourse, destigmati-

sation of the disease, personal empowerment, trying

of new roles and gaining confidence. Similarly,

Carpenter [22] presents the importance participants

identified of being associated with others who shared

the experience of SCI. She also talks about the role of

accumulated positive social experience and the

reassertion of relationships with friends, family and

partners as important factors in restoring a sense of

continuum and identity. Courtenay et al. [25]

describe the support system (family, friends, support

group) as contributing to a catalytic experience that

moves people beyond their initial reaction to

diagnosis of HIV/AIDS.

Dubouloz et al. [20], in their study of people with

rheumatoid arthritis, and Paterson et al. [21], in their

study of Type 1 diabetes, both discuss the role of a

health professional in creating an environment that

supports transformation of the way participants

viewed management of their disease. Conversely,

lack of environmental support appeared to be a

barrier to transformation in a study of women

following diagnosis of breast cancer [23]. This study

found that those who reported feeling stuck and

unable complete transformation lacked the support

of health care providers, family and friends.

Based on the results of this study and the above,

support plays a role in moving a person with chronic

illness towards transformation through providing a

sense of shared experience, of continuity, of being

valued and through building feelings of competence.

Knowledge

Participants sought control in their lives following

stroke. One way that they did this was through

seeking knowledge that would help them understand

what had happened to them, why it may have

happened (risk factors) and what this meant in terms

of possibilities for recovery and living their lives.

Inherent in seeking and gaining knowledge was the

aspect of reflection on the information obtained and

its relevance to their reality.

Lack of knowledge and low satisfaction related to

provision of information of people who have experi-

enced stroke and their carers has been reported in the

literature [34]. Yet a review of the literature reveals

little benefit of information provision and education

in the area of stroke [35]. Perhaps, lack of benefit

arising from education programmes may relate to

how well these programmes correspond to the stroke

survivors’ underlying purpose for knowledge acquisi-

tion – one of re-establishing control. One other study

was found that mentions, but does not elaborate on,

knowledge as a source of control for participants

following stroke [11]. Programmes that provide

information but do not encourage participants to

use this information to enable them to regain control

of their lives may be viewed as ineffective.

1062 D. Kessler et al.

The role of knowledge in studies of transformation

with other chronic illnesses is not specifically

discussed but is mentioned in a few studies. Knowl-

edge of illness was described by Dubouloz et al. [20]

as a key element for critical reflection and the

resultant transformation of participants with rheu-

matoid arthritis receiving occupational therapy ser-

vices. Similarly, Paterson et al. [21] describe

participants with Type 1 diabetes as developing a

new understanding of health in a process where they

discover that they can respond to challenges and

manage their disease. Viewing self as in control of the

disease allowed the person to focus on life goals

despite limitations posed by effects of the disease.

In the present study, participants used knowledge

gained through reading and through comparison

with others to make decisions related to recovery,

health and living. In this way they established

themselves as being in control of their health and

their lives with stroke. Knowledge related to illness

and its management/expected course appears to

facilitate movement towards transformations for

participants with some chronic illnesses.

Choices to action

Participants in this study appeared to use knowledge

to re-establish a sense of personal control, which

then promoted making choices and taking action to

regain more control in their lives. Through choices

and actions that resulted in a positive outcome, such

as improvements in abilities, participants rebuilt their

feelings of competence.

In other studies of the experience of stroke themes

arise related to control, competence, choice and

action. Three of the crises experienced by people

following stroke, which Nilsson et al. [13] identified,

reflect choices and actions related to control and

competence. These are ‘autonomy vs. shame/doubt,’

‘initiation vs. guilt’ and ‘industry vs. inferiority’. In

these themes, participants talked about the ability to

control the world, regaining autonomy, courage to

act and regaining competence. George et al. [36]

examined impact of emotional changes following

stroke. One subject in their study reported the

positive impact of participating in activities where

he felt a sense of control. Conversely, ongoing

depression following stroke has been associated with

lower levels of perceived control over recovery as

well as a greater degree of communication

impairment [37].

In some studies of transformation with other

chronic illnesses, making choices and taking action

were reported as being associated with transforma-

tion. In the study of people with cardiac conditions

[16], clients were finally able to apply what was

taught in their rehabilitation program to their daily

living after having transformed their meaning of work

which had been a barrier to new learning. Namely,

clients integrated different ways of cooking and

eating, and a certain number of minutes of physical

activity into their daily schedule. In her study of

women with breast cancer, Carpenter et al. [23]

describe a difference between those with positive

transformation and those with minimal transforma-

tion or described as stuck. Those with positive

transformation made the choice to review their lives

and had courage and strength to take action and

make changes. Those with minimal transformation

had a high degree of self-acceptance and did not

make similar choices. Those who were stuck were

not able to describe what changes were desired. They

lacked a clear decision to guide action. In her

description of how people redefine disability follow-

ing SCI, Carpenter [22] talks about building con-

fidence and self-esteem through exploring options,

getting involved and meeting self-determined goals.

Courtenay et al. [25] also talk about people with

HIV/AIDS making choices and taking action

through exploring options, modifying activities and

choosing alternate perceptions.

These studies support the role of making choices

and taking action in the transformation process. To

make these choices and take action people may

require some feeling of control, courage and

strength.

The interconnection of support, knowledge and choices

to action

This study introduces an interconnection between

support, knowledge and choices to action within the

transformation process that is not presented else-

where in the literature exploring adaptation following

stroke or meaning perspective transformation in

people with other chronic illnesses. Further research

exploring transformation by following people who

have experienced stroke through the process of

change could provide more information on the

interplay of contributing factors and the progression

of meanings perspective transformation.

Limitations

It is important to point out that the participants in

this study were recruited primarily from a stroke

support organisation. Therefore, they may have been

inclined towards finding meaning in information,

action and support from others. As well, their

perceptions of their processes of adjustment come

from retrospective reflection on the preceding 3–11

Meaning perspective change following stroke 1063

years. These perceptions may have changed over

time and may still be open to change. However, we

believe that the in-depth interviews focussing on the

transformation process provide a unique and helpful

view of the process of making a good recovery from

stroke.

The individuals interviewed were a relatively

young group of stroke survivors. The experience of

older individuals, who make up the majority of stroke

survivors, may be quite different. As well, to

participate in the study, a certain level of ability to

comprehend and express thoughts and ideas was

needed. Therefore, this study was not able to provide

insight into the experience of those with more

significantly impaired cognition and communication.

This study was also limited to those who could

communicate in English thereby excluding a wide

range of cultural backgrounds. As well, the bound-

aries of this study limited participants to those who

are community dwelling and did not include the

experiences of those living in long term care facilities

or retirement homes. This study provides insight into

the experience of a small number of people who have

experienced stroke and describe themselves as view-

ing life post-stroke in a generally positive way.

Conclusion

The results of this study show that transformation

of meaning perspective can occur following stroke.

The process of meaning perspective transformation

presented in this article involved two triggers that

disrupted the personal paradigms of participants.

These were experience of limitations and feelings of

vulnerability. Transformation was then facilitated by

an evolving interaction between knowledge and

choices to action, within an overarching presence of

support that instilled feelings of value, competence

and belonging. Important aspects of knowledge and

choices to action in the transformation process were

(a) knowledge of health with the choice to take

control and responsibility for one’s health, (b)

knowledge of the potential for recovery and for living

with stroke and (c) the choice of an optimistic

approach to life which led to ongoing learning about

abilities and limitations and to building competence

through participating in valued activities. At least the

first two of these aspects, knowledge regarding health

and potential for recovery, could be facilitated during

the rehabilitation process and this may enhance

adjustment following stroke.

Further research to build on the substantive theory

of the transformation of meaning perspective follow-

ing stroke presented in this paper is needed. This

research could include exploring transformation with

those who have experienced strokes of differing

severity, or exploring the experience of transforma-

tion from a temporal perspective.

Declaration of interest: The authors report no

conflicts of interest. The authors alone are respon-

sible for the content and writing of the paper.

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