CLINICAL COMMENTARY

‘Optimal’ participation: A reflective look

ANNIE ROCHETTE1,2, NICOL KORNER-BITENSKY2,3 & MELANIE LEVASSEUR4

1School of Rehabilitation, Faculty of Medicine, Universite de Montreal, Montreal, Canada, 2Centre de Recherche

Interdisciplinaire en Readaptation du Montreal Metropolitain, Montreal, Canada, 3School of Physical and Occupational

Therapy, McGill University Montreal, Canada, and 4Research Centre on Aging, Sherbrooke Geriatric University Institute

Accepted December 2005

AbstractPurpose. There is mounting interest by professionals working in the rehabilitation sciences related to the concept ofparticipation, especially given the increasing numbers of individuals worldwide living with chronic illnesses. It is nowinternationally agreed that participation level is influenced by both personal and environmental factors. The question arisesas to the meaning of ‘optimal’ participation. The main objective of this article is to provide a reflective look at the concept ofparticipation and the meaning of ‘optimality’ for individuals with and without disability and to explore both in relation toresponse shift.Method. Similarities in definitions of participation are first examined. Normal participation level is discussed leading to an‘optimal’ level based on normality. Cases are used to illustrate normality as well as how ‘optimal’ participation can beachieved through a transition period despite disabilities caused by a health condition such as a stroke.Results. ‘Optimal’ participation would rely on a perfect fit between an individual’s reality (how activities and roles areactually realised) and expectations of how activities and roles should be accomplished. A transition period, including aresponse shift, following an acute event or onset of a chronic condition can lead to an optimal participation level despitepersisting disabilities.Conclusions. A better understanding of the meaning of optimal participation and its association to response shift isimportant to clinical practice. Interventions aimed at optimizing participation through assisting clients who are experiencinga response shift can then be designed to maximize participation and concomitantly, quality of life in those with chronic healthconditions.

Keywords: Participation, response-shift, disability, normality, stroke

Introduction

In the past decade, there has been an increased

interest by the scientific community in the concept of

participation, and even more pointedly by the

rehabilitation sciences. With the recognition that

participation is important, has come the develop-

ment of various tools to measure participation and

changes in participation based on intervention.

Although it is now internationally agreed in the

International Classification of Functioning, Dis-

ability and Health (ICF) [1] that both personal

and environmental factors contribute to levels of

participation of an individual, the meaning of

‘optimal’ participation is less clear. This creates

some confusion and difficulty in interpreting scores

of instruments designed to quantify participation

both in research and in clinical practice. Indeed,

although participation incorporates basic activities

essential for survival common to all humans, it also

includes activities and roles necessary for well-being

and self-development that vary from one individual

to another.

The main purpose of this article is to provide a

reflection on the concept of participation and its

potential association to response shift. Firstly,

definitions are given and similarities with the concept

of occupation are discussed. Secondly, the ‘normal-

ity’ of participation is addressed in order to define

Correspondence: Annie Rochette, PhD, School of Rehabilitation, Universite de Montreal, C.P. 6128, Succursale Centre-Ville, Montreal, Quebec, Canada

H3C 3J7. Tel: 1514 343 2192. Fax: 1 514 343 2105. E-mail: annie.rochette@umontreal.ca

Disability and Rehabilitation, October 2006; 28(19): 1231 – 1235

ISSN 0963-8288 print/ISSN 1464-5165 online ª 2006 Informa UK Ltd.

DOI: 10.1080/09638280600554827

Dis

abil

Reh

abil

Dow

nloa

ded

from

info

rmah

ealth

care

.com

by

Nor

thea

ster

n U

nive

rsity

on

11/1

8/14

For

pers

onal

use

onl

y.

what would be an ‘optimal’ participation level using

two cases studies. Finally, an acute stroke event is

used to illustrate how participation can be affected by

a health problem and how it can return to an optimal

level during a transition period, even in the face of

persisting disabilities.

Definitions

According to various dictionaries, participation is

defined as ‘to take part, be or become actively

involved, or share (in)’ [2] or ‘the act of sharing the

activities of a group’ [3]. In the rehabilitation

sciences, participation can be viewed as the latest

term for community reintegration, community being

‘common, part of a larger group’ and reintegration ‘a

renewing, or making whole again’ [4]. Another term

gaining popularity in the rehabilitation sciences is

engagement used synonymously for participation or

community reintegration. Engagement is more ap-

propriately used over the long term in individuals

with chronic conditions who do not necessarily

‘reintegrate’ into the community after a hospitaliza-

tion but rather, attempt to remain engaged in

community life in the face of changing body

functions and structures. To engage refers to ‘involve

intensely, to take part, participate’ [2].

The ICF uses the term participation in its frame-

work and defines it as being ‘involvement in a life

situation’ [1]. The proposed qualifier to quantify

limitations in participation is the presence of

performance problems in the person’s actual envir-

onment. To identify problems, one typically uses a

comparison with a ‘norm’, meaning a similar

individual without a health problem. This method

could, arguably, be adequate for basic activities

necessary for survival, but raises some applicability

difficulties for others activities and roles. In fact,

many activities and roles are chosen for their

meaningfulness on an individual basis. For exam-

ple, a ‘normal’ individual without a health problem

could be used as a comparison to determine

limitations in eating after a stroke. However,

normality for specific recreation activities is much

harder to define since activities such as playing golf

or cooking for pleasure, reading or doing crafts,

are chosen for their meaningfulness to a given

individual.

In contrast to the ICF’s definition of participa-

tion, social participation as proposed by the

conceptual model of the Disability Creation Process

(DCP), is more explicitly defined as ‘Optimal

accomplishment of daily activities and social roles

valued by the person or socio-cultural environment

which ensure survival and development in society

throughout life’ [5]. Therefore, to illustrate, one

‘healthy – normal’ individual with sufficient financial

resources who does not value cooking could have all

daily meals prepared by a cook, even though the

ability to cook is present. In such a case, once an

activity is not valued or chosen for accomplishment,

and when facilitators of the environment can

compensate, specific abilities are not considered

necessary to achieve optimality. In the same line of

thinking, an individual who values travel as an

activity to ensure his/her development and who does

not have the resources to travel would be in a

situation of handicap, even though ability to travel

might be there.

The term occupational performance from the

Canadian Model of Occupational Performance

(COPM) is defined as the ‘ability to choose,

organize, and satisfactorily perform meaningful

occupations that are culturally defined and age-

appropriate for looking after one’s self, enjoying life,

and contributing to the social and economic fabric of

a community’ [6], while the term occupational

participation used in the Model of Human Occupa-

tion (MOHO), is defined as ‘ engaging in work, play

or activities of daily living that are part of one’s

sociocultural context and that are desired and/or

necessary to one’s well-being’ [6]. These terms

present many similarities with the term social

participation of the DCP. The importance of choice,

value, desire and meaningfulness of activities and

roles, or occupation, is present in all three defini-

tions. These terms imply the accomplishment of

daily activities AND social roles, in other words,

activities essential to survival, as well as activities or

roles chosen (or valued) for their meaningfulness and

therefore ensuring self-fulfilment. Which activities

and roles are actually realised constitute what could

be called ‘reality’: ‘the state of the world as it really

is rather than as you might want it to be’ [3].

Therefore, in contrast with abilities, participation

would be the ACTUAL way that activities and social

roles are accomplished. This implies that specific

activities or roles could be accomplished entirely by

someone else if I so choose, even though I am able

to accomplish them. So, there is the reality of how

activities and roles are accomplished which, concep-

tually, is determined by both personal and

environmental factors.

In parallel to this reality, there is pleasure, which

refers to ‘What the will dictates or prefers as

gratifying or satisfying; hence, will; choice; wish;

purpose’ [4]. This is roughly equivalent to the value

of activities and social roles of the DCP and choice –

meaningfulness of occupational performance of the

COPM, and desired for one’s well-being of the

MOHO. Pleasure is what drives choice, value and

expectations from a specific activity or role. Pleasure

can also be referred to as expectations, defined as

‘wishing with confidence of fulfillment’ [3].

1232 A. Rochette et al.

Dis

abil

Reh

abil

Dow

nloa

ded

from

info

rmah

ealth

care

.com

by

Nor

thea

ster

n U

nive

rsity

on

11/1

8/14

For

pers

onal

use

onl

y.

Normality of participation

We now explore normality of participation using

cases to illustrate ‘normal’ participation in activities

and roles not essential for survival but necessary for

individual self-fulfilment. As well, we look at how

congruence between reality and pleasure can con-

tribute to an optimal level of participation.

Case example 1

A normal ‘healthy’ adult individual, Kelly, performs

all activities necessary for survival (eating, washing,

dressing, moving around, etc.) by herself without

assistance (human or technical). She works fulltime

and enjoys it. She lives alone and chooses to hire a

lady to help her with cleaning of her home. This gives

her more free time to engage in her leisure activities

with friends, namely, shopping, dancing and playing

volleyball. Without this help, Kelly would have to give

up a few of her favourites activities that she considers

essential to her well-being.

Case example 2

Another normal ‘healthy’ individual, Karen, also

performs all activities necessary for survival without

assistance. However, Karen lives with her spouse

and cares for their two young children. Her spouse

is in charge of preparing daily meals for the family

and helps her with house cleaning. By not having

to prepare meals, Karen has some free time to

practice one of her favourite leisure activity – playing

piano, an activity that she considers essential to her

self-development.

These two examples illustrate an ‘optimal’ partici-

pation level of ‘normal – healthy’ individuals that

depends not only on abilities and resources, but,

more importantly, on the congruence between reality

and expectations. The congruence between what a

person feels or thinks about how life should be and

what he/she actually has, owns, or controls (reality),

produces a cognitive or emotional reaction such as

satisfaction or dissatisfaction, happiness or depres-

sion [7]. The participation levels of Kelly and Karen

are optimal although both receive help to accomplish

some activities. Receiving assistance to accomplish an

activity may, in a holistic vision of optimal participa-

tion level, enable engagement in other activities or

roles that would have been impossible without it.

As these case studies have illustrated, with such a

broad concept as participation, ‘normality’ can

hardly be defined as performing an activity without

assistance. Consequently, when using measurement

instruments that include assistance used as an

indicator of participation, a ‘perfect’ score (one that

implies the accomplishment of all activities and roles

without assistance) is not ‘normal’. Thus, reference

values have to be developed to differentiate between

activities and roles ‘normally’ accomplished without

assistance versus with assistance, and to indicate if

the assistance, when used, is valued or required.

‘Optimal’ participation would then be characterised

by a perfect fit between reality (how activities and

roles are actually realised) and expectations of how

activities and roles should be accomplished. Hope-

fully, meaningful choices and expectations are guided

by the possibilities of the reality (both abilities and

context). For example, an individual who is allergic to

animals from early childhood (problem with abilities)

would be at greater risk of suboptimal participation at

work if he/she chooses to become a veterinarian. An

individual living downtown a big city (context) would

also be more at risk of suboptimal participation if he/

she chooses agriculture as a main occupation, unless

a change in context is made through a move to the

country. When meaningful choices are supported

both by abilities and context, a perfect fit between

reality and expectations is easier to achieve, in essence

leading to optimal participation.

Transition

Post-stroke sequelae, apparent or invisible, create a

new reality. While rehabilitation specialists work with

clients towards an improvement of the reality, life after

stroke is typically perceived as never being the same as

before [8 – 11]. After the stroke, to reach an optimal

participation level, individuals are faced with an

inevitable transition period where expectations have

to be redefined. This change, or reset in expectations

after a modification of an individual’s health status,

has been described as response shift, a circular

process defined by a change in the meaning of one’s

self-evaluation of a subjective concept [12,13].

Response shift appears to be more likely to occur in

the first months following a stressful event and

depends on the intensity of the event. The process

seems to be variable according to time and not linear,

thus allowing the person to maintain equilibrium

during times of transition. For example, after every

significant variation (loss or recovery) of functional

autonomy the person will, once again, be able to

change his/her meaning of the concept. Response

shift is initiated by changes in internal standards,

changes in importance of values or reconceptualiza-

tion of the subjective evaluative concept. To clarify,

the changes in internal standards refer to a psycho-

metric recalibration of ones’ perception of what

minimal level would constitute an optimal level. For

example, an individual with decreased visual acuity

due to normal ageing who refuses to wear his glasses

could eventually become frustrated with his inability

to drive safely at night, and gradually adapt and

‘Optimal’ participation: A reflective look 1233

Dis

abil

Reh

abil

Dow

nloa

ded

from

info

rmah

ealth

care

.com

by

Nor

thea

ster

n U

nive

rsity

on

11/1

8/14

For

pers

onal

use

onl

y.

accept the need for glasses. The acceptance of doing

activities and roles differently, in this case with the

use of an assistive device on a day-to-day basis

without getting constantly frustrated, would consti-

tute a change in internal standards. Second, the

change in value is a change in the importance of

activities and roles that constitute participation. For

example, after a below-knee amputation where mobi-

lity requires greater effort, an individual could put

more importance on his interpersonal relationships

and less value on outings such as doing the groceries

(by allowing the spouse to grocery shop without

becoming frustrated). Lastly, reconceptualization

refers to a redefinition of the meaning of optimal

participation, that is, a redefinition of what domains

of participation would be necessary for a given

individual to reach optimality. Much of the literature

on response shift has been associated with perceived

quality of life [12,14], but we propose that it can also

be applied to optimal participation. Typical mechan-

isms that help to trigger a positive response shift

include: coping, social comparison, goal reordering,

reframing expectations and spiritual practice [13].

After an event such as a stroke, pleasure has to be

redefined, expectations have to be reset, a response

shift has to occur IF the individual is to accept a new

reality which is necessarily different from the pre-

stroke reality. It can be postulated that, by improving

abilities and decreasing barriers, rehabilitation spe-

cialists may contribute to decreasing the gap between

post-stroke reality and pre-stroke expectations and

thus minimise dissatisfaction and frustration. The

question is, ‘do rehabilitation specialists also have a

role to play in helping individuals with a stroke to

redefine their expectations in a realistic way by

providing adequate and timely information, AND

support and coaching to them and their families?’ If

we respond YES, then clinicians could assist clients

to learn the skills to facilitate a response shift towards

optimal participation by helping them to: (1) adjust

their internal standards of what level of participation

corresponds to optimal participation; (2) reconsider

the relative importance of various values; and (3)

redefine what optimal participation means to them

(reconceptualization of the activities and roles neces-

sary to accomplish optimal participation)?

We now explore optimal participation post-stroke

based on a successful adaptation process taking place

through a transition period where the individual

becomes acquainted with a new reality.

Case example 3

John, 54-year-old bachelor, had worked full time as a

lawyer’s assistant for many years and was very active

in sports. A right hemisphere stroke has left him with

decreased sensation in the left upper extremity,

fatigue, and a diminished attention span, especially

when reading. Post-stroke he returned to work part

time and reduced the frequency and intensity of his

activities outside of the home.

During the transition period, John was able to

attain an optimal participation level despite persisting

sequelae. How was he able to do so? He recalibrated

what corresponds to an optimal participation by

accepting that he would need to read his books for

shorter periods of time. His perception of the

importance of work diminished, while the quality of

his relationships with his co-workers increased

(changes in importance of values). In addition, he

chose specific activities for their meaningfulness

instead of resuming every pre-stroke activity (recon-

ceptualization). As an example, with the assistance of

the rehabilitation specialist, he went back to playing

golf using adaptations and redefined the meaning of

the game by playing for shorter periods of time (nine

holes instead of 18 holes). This allowed him to

gradually gain endurance and put more importance

on what can accompany an activity – in this case,

having lunch with friends after the game.

Conclusion

Participation is a broad concept that includes

activities essential to survival as well as activities

and roles necessary for well-being. Caution is thus

imperative in the interpretation of scores of instru-

ments designed to quantify participation. Based on

the similarities in the various definitions of participa-

tion and occupation, optimal participation would

rely on a perfect fit between the reality (how activities

and roles are actually realised) and expectations of

how activities and roles should be realised. Conse-

quently, in the presence of a health condition leaving

sequelae such as a stroke, optimal participation can

be achieved through a transition period where a

response shift occurs. Rehabilitation specialists, and

more specifically occupational therapists with their

knowledge on activity analysis and adaptation, are in

an opportune situation to develop new interventions

aimed at facilitating this response shift. The devel-

opment of assessments that evaluate response shift

and interventions that focus on facilitating response

shift are likely to impact greatly on patient outcomes.

Once developed, these interventions will benefit

from effectiveness studies evaluating their impact

on patient outcomes in the domains of participation

and quality of life.

References

1. World Health Organization. International Classification of

Functioning, Disability and Health. WHO: Geneva; 2001.

2. The New Collins Dictionary & Thesaurus in one Volume.

Glasgow: William Collins Sons & Co Ltd; 1987.

1234 A. Rochette et al.

Dis

abil

Reh

abil

Dow

nloa

ded

from

info

rmah

ealth

care

.com

by

Nor

thea

ster

n U

nive

rsity

on

11/1

8/14

For

pers

onal

use

onl

y.

3. Hyperdictionary [Web Page]. Located at: http://www.

hyperdictionary.com/ (accessed 11 November 2005).

4. Webster’s Dictionary [Web Page] 1913. Located at: http://

www.hyperdictionary.com (accessed 11 November 2005).

5. Fougeyrollas P, Noreau L, Bergeron H, Cloutier R, Dion SA,

St-Michel G. Social consequences of long term impairments

and disabilities: conceptual approach and assessment of

handicap. International Journal of Rehabilitation Research

1998;21:127 – 141.

6. Kielhofner G. Conceptual Foundations of Occupational

Therapy. Philadelphia, PA: F.A. Davis Company; 2004.

7. Calman KC. Quality of life in cancer patients – An hypothesis.

Journal of Medical Ethics 1984;10(3):124 – 127.

8. Sisson RA. Life after a stroke: coping with change. Rehabilita-

tion Nursing 1998;23(4):198 – 203.

9. Viitanen M, Fugl Meyer KS, Bernspang B, Fugl Meyer AR.

Life satisfaction in long-term survivors after stroke.

Scandinavian Journal of Rehabilitation Medicine 1988;20(1):

17 – 24.

10. Smout S, Koudstaal PJ, Ribbers GM, Janssen WG,

Passchier J. Struck by stroke: A pilot study exploring quality

of life and coping patterns in younger patients and spouses.

International Journal of Rehabilitation Research 2001;24(4):

261 – 268.

11. Carlsson GE, Moller A, Blomstrand C. A qualitative study of

the consequences of ‘hidden dysfunctions’ one year after a

mild stroke in persons 575 years. Disability & Rehabilitation

2004;26(23):1373 – 1380.

12. Schwartz CE, Sprangers MAG. Adaptation to changing

health: Response shift in quality-of-life research. Washington,

DC: American Psychological Association; 2000.

13. Rapkin BD, Schwartz CE. Toward a theoretical model of

quality-of-life appraisal: Implications of findings from studies

of response shift. Health & Quality Life Outcomes 2004;2:14.

14. Wilson IB. Clinical understanding and clinical implications

of response shift. Social Science & Medicine 1999;48(11):

1577 – 1588.

‘Optimal’ participation: A reflective look 1235

Dis

abil

Reh

abil

Dow

nloa

ded

from

info

rmah

ealth

care

.com

by

Nor

thea

ster

n U

nive

rsity

on

11/1

8/14

For

pers

onal

use

onl

y.