self-management of parkinson's disease: guidelines for program development and evaluation

Self-Management of Parkinson’s Disease:Guidelines for Program Development

and Evaluation

Kathleen Doyle Lyons, ScD, OTR/L

ABSTRACT. Numerous self-management training programs have beencreated for persons with chronic illness to assist them in cultivating theskills and confidence to promote their own health and well-being. How-ever, self-management training is rarely explicitly discussed regardingthe population of people who have Parkinson’s disease. This paper re-views published theoretical and empirical literature to identify guide-lines that should be considered when developing and evaluatingself-management training programs for persons with Parkinson’s dis-ease. Self-management of disease is presented as one aspect of a collabo-rative management approach to healthcare in which patients, caregivers,and healthcare practitioners are all working in concert toward explicit,shared, and specific goals. [Article copies available for a fee from TheHaworth Document Delivery Service: 1-800-HAWORTH. E-mail address:<[email protected]> Website: <http://www.HaworthPress.com> © 2003by The Haworth Press, Inc. All rights reserved.]

KEYWORDS. Parkinson’s disease, patient education, self-management,self-efficacy

Kathleen Doyle Lyons is Doctor of Science in Therapeutic Studies, Project Coordi-nator, Center for Psycho-Oncology Research, Dartmouth Medical School.

Address correspondence to the author at 21 Emily Lane, Newbury, NH 03255(E-mail: [email protected]).

The author’s work was supported by a Health Services Dissertation Research grantfrom the Agency for Healthcare Research and Quality (Grant number 1 R03 HS13292-01)and a grant from the American Occupational Therapy Foundation.

Physical & Occupational Therapy in Geriatrics, Vol. 21(3) 2003http://www.haworthpress.com/store/product.asp?sku=J148

2003 by The Haworth Press, Inc. All rights reserved.Digital Object Identifier: 10.1300/J148v21n03_02 17

Phys

Occ

up T

her

Ger

iatr

Dow

nloa

ded

from

info

rmah

ealth

care

.com

by

Mic

higa

n U

nive

rsity

on

11/0

4/14

For

pers

onal

use

onl

y.

Parkinson’s disease is a progressive, neurological disorder affecting 1%of those over 65 years of age and .4% of those over the age of 40 (Berkow,Beers, & Burs, 1999). Parkinson’s disease is primarily characterized bymotor symptoms of tremor, rigidity, akinesia, and postural instability.These symptoms are a result of damage to the dopamine-producingcells in the substantia nigra, though the etiology of this damage has notbeen conclusively determined (Cummings, 1999). Currently, there is nocure for Parkinson’s disease. Medication and surgical interventions areused to minimize disabling symptoms. Rehabilitation therapies can bebeneficial in helping people retain and improve physical functioningand the ability to complete activities of daily living (de Goede, Keus,Kwakkel, & Wagenaar, 2001; Murphy & Tickle-Degnen, 2001). Simi-lar to other chronic diseases, lifestyle modification is frequently neces-sary to maximize physical functioning and quality of life.

Authors have argued that the traditional medical model works wellfor remedying acute illnesses but is inadequate for managing chronicillnesses (Holman & Lorig, 2000; Lorig, 2002). To treat acute illnessthe practitioner identifies the threat to health, prescribes a remedy, andthe patient follows it to regain health. For chronic illnesses, a cure is un-attainable and the goal of health care intervention is to enhance qualityof life and ability to function. To meet that goal, the general and techni-cal knowledge of the healthcare practitioner is necessary, but insuffi-cient. Technical knowledge must be complemented by the individualizedand experiential knowledge of healthcare patients. It is the patient andhis or her caregivers who most fully understand the influence of the ill-ness on personal well-being and lifestyle (Holman & Lorig, 1992).Moreover, in the context of a chronic illness, the patient is ultimately re-sponsible for managing the daily aspects of the disease while the practi-tioner, at best, serves as a resource to assist the patient and his or hercaregivers (Gruman & Von Korff, 1997).

Collaborative management is an approach to healthcare that is re-sponsive to the needs of persons with chronic illness (Von Korff, Gruman,Schaefer, Curry, & Wagner, 1997). The collaborative management ap-proach encourages the patient’s ability to improve his or her own healthin conjunction with appropriate medical and preventive interventions. Itcreates a situation where patients, their caregivers, and their healthcareproviders are all working toward explicit, shared, and specific goals.Part of collaborative management involves ensuring that patients andtheir caregivers have the skills needed to take actions on a daily basisthat reduce the influence of chronic illness on health. This ability tomonitor one’s own disease progression and to take action to promote

18 PHYSICAL & OCCUPATIONAL THERAPY IN GERIATRICS

Phys

Occ

up T

her

Ger

iatr

Dow

nloa

ded

from

info

rmah

ealth

care

.com

by

Mic

higa

n U

nive

rsity

on

11/0

4/14

For

pers

onal

use

onl

y.

health and minimize disability is referred to as self-management (Clarket al., 1991; Holman & Lorig, 1992). Self-management, thus, is one as-pect of the collaborative management approach to healthcare.

Self-management training programs have been created for personswith chronic illness to assist them in cultivating the skills and confi-dence to promote their own health and well-being. A recent review ofsuch programs did not cite any programs that targeted people with Par-kinson’s disease (Barlow, Wright, Sheasby, Turner, & Hainsworth, 2002).This paper reviews the literature to determine guidelines for developingand evaluating a self-management program for persons with Parkin-son’s disease. In the first half of the paper a theoretical framework forself-management education is presented. Guidelines for program devel-opment are then summarized, based upon this theoretical perspectiveand the unique presentation and pathology of Parkinson’s disease. Thepaper ends with suggestions for evaluating self-management programsfor persons with Parkinson’s disease.

OVERVIEW OF SELF-MANAGEMENT

The goal of a self-management program is to train participants to success-fully take actions on a daily basis that reduce the influence of chronic ill-ness on health (Clark et al., 1991). Self-management programs differfrom traditional patient education (Lorig, 1993). Patient education pro-grams typically impart disease specific information to participants. Pa-thology and treatment protocols are presented to increase the partici-pant’s understanding of the disease process; the assumption is that un-derstanding a disease will help people cope with the illness and itstreatment. In self-management programs, the emphasis is upon helpingparticipants develop the problem-solving skills needed to cope with thedisease. Disease specific information is often needed to solve problemsrelated to illness. However, Mazzuca’s (1982) meta-analysis of educa-tion research suggested that knowledge of disease does not necessarilyor automatically translate into the adoption of health-promoting behav-iors. A more recent synthesis of patient education meta-analyses simi-larly reported that larger effect sizes were generally seen in programsthat used social learning techniques and behavior modification as com-pared to purely didactic approaches (Cooper, Booth, Fear, & Gill, 2001).These results suggest that, in addition to disease-specific knowledge,persons with chronic illness need to have the skills, resources, and

Kathleen Doyle Lyons 19

Phys

Occ

up T

her

Ger

iatr

Dow

nloa

ded

from

info

rmah

ealth

care

.com

by

Mic

higa

n U

nive

rsity

on

11/0

4/14

For

pers

onal

use

onl

y.

confidence to successfully manage their illnesses on a daily basis (Clarket al., 1991; Holman & Lorig, 2000; Lorig, 2002).

Self-management of disease involves observing one’s own behaviorand attuning to indicators of physiological and emotional health or dis-tress. Observation leads to problem identification, after which solutiongeneration and goal setting can occur. Self-management programs teachgeneral problem-solving strategies and encourage participants to applythe strategies to personal problems (Lorig, 1993). Participants in self-management programs also learn to identify resources and supports thatwill allow them to continue problem-solving outside of the structuredprogram.

An example of self-management of Parkinson’s disease within a col-laborative management model of healthcare would be illustrative. Con-sider a 65-year-old man named Tom with Parkinson’s disease who feelsfrustrated with his seemingly capricious episodes of disabling muscularrigidity. A self-management program would teach Tom and his caregiversto monitor his rigidity, perhaps using a structured format like a symp-tom diary. The focused observation may help Tom to see a subtle pat-tern related to the rigidity. For example, the rigidity may occur at certaintimes of day, certain times in the medication cycle, or in certain situa-tions. Once a problem pattern has been specified, then brainstorming ofinterventions can occur. In collaboration with caregivers and healthcarepractitioners, Tom might generate the following options:

a. to rearrange his daily routine so that important events are not af-fected by the discomfort associated with rigidity,

b. to develop a stretching program to attempt to reduce the rigidity, orc. to work with his neurologist to adjust his medications.

With the input from caregivers and professionals, Tom would then choosean approach and set an achievable goal for how he would like to see theproblem resolved; this goal would be explicitly communicated to andshared by the caregiver and practitioners. Tom would also want to con-sider his emotional response to the rigidity and identify effective waysto handle his frustration. In addition to teaching this problem-solvingapproach for physical and emotional issues, a self-management pro-gram would have Tom consider what kind of support he would need tomeet his goal and how he might obtain that support from family, physi-cian, and community resources.

THEORETICAL ORIENTATION

In their meta-analysis of health-related behavior modification programs,Cooper, Booth, Fear, and Gill (2001) reported that many educational in-


Phys

Occ

up T

her

Ger

iatr

Dow

nloa

ded

from

info

rmah

ealth

care

.com

by

Mic

higa

n U

nive

rsity

on

11/0

4/14

For

pers

onal

use

onl

y.

terventions fail to use theoretically-based teaching strategies. To be suc-cessful, a self-management program should be based upon an empirically-tested theory that can guide efforts to assist people in exploring new be-havior and building a repertoire of adaptive skills. Bandura’s (1991) so-cial cognitive theory of self-regulation is a useful framework for self-management interventions (Clark et al., 1991; Clark et al., 1988; Loriget al., 2001; Neufeld & Kniepmann, 2002, May).

Social cognitive theory (Bandura, 1991; 1997) assumes that humanshave agency, or the ability to act to meet desired goals. Three factors in-fluence a person’s actions: internal or personal factors, behavior, and theenvironment. Self-regulation refers to a person’s attempt to control thesethree factors to meet a goal. A person self-regulates his or her actions by

1. systematically observing own behavior,2. conjuring a standard to which the behavior should be compared, and3. evaluating the behavior and regulating future actions.

These three subfunctions of self-regulation are referred to as self-obser-vation, judgmental process, and self-reaction, respectively. Social cogni-tive theory, therefore, proposes that people develop strategies to sur-mount multi-faceted challenges by observing the self within situations,evaluating what is occurring, and responding with problem-solving be-haviors.

During self-regulation a person exploits opportunities and mobilizesthe resources of the personal, behavioral, and environmental factors toproduce efficacious action. Humans have beliefs about their ability toorganize and execute the actions needed to accomplish their goals. So-cial cognitive theorists call these beliefs “perceived self-efficacy.” Per-ceived self-efficacy strongly influences action (Bandura, 1997). It affectsthe amount of effort one will spend, the length of time one will perse-vere, the resilience to adversity one will exhibit, the amount of stressone will feel, and ultimately, the level of the accomplishment one willachieve.

Social cognitive theory asserts that both the actual performance skillsand a belief in the ability to use those skills are needed to act efficaciously.That is to say, a person not only needs to possess skills for action, but heor she must also believe in his or her ability to successfully use thoseskills in a particular situation. Indeed, perceived self-efficacy has beenfound to mediate the process of behavioral change in many studies (seeBandura, 1997, for a review).


Phys

Occ

up T

her

Ger

iatr

Dow

nloa

ded

from

info

rmah

ealth

care

.com

by

Mic

higa

n U

nive

rsity

on

11/0

4/14

For

pers

onal

use

onl

y.

GUIDELINES FOR SELF-MANAGEMENT PROGRAMDEVELOPMENT

Theoretical Implications for Self-Management Program Development

Social cognitive theory offers the following general guidelines forself-management programs. These guidelines are summarized in Table 1.

Teach systematic observation. The ability to self-regulate begins withthe ability to attend to one’s behavior, the context in which it occurs,and the short- and long-term consequences that result (Bandura, 1991).Careful attention to how one feels and acts is needed to detect the some-times subtle and complex relationships between symptoms, behaviors,and emotions. Self-management programs, therefore, need to teachpeople to observe their symptoms, behavior, and emotions in system-atic ways (Holman & Lorig, 1992). The techniques can be highly for-malized, such as using a symptom diary to chronicle symptoms andactivities in a written format, or informal, such as having each programparticipant identify specific symptoms or behaviors that he or she needsto regularly assess. What each person observes may vary based upon hisor her disease manifestations and goals for personal change.

Set measurable goals. The judgmental process is the second sub-function in self-regulation (Bandura, 1991). A person needs to have astandard to which he or she can compare behavior, or an expectation ofwhat the behavior should look like. Improved health is a vague objec-tive; specific indicators are needed to assess whether one has achievedthe goal of improved health. Self-management programs, therefore,should emphasize the development of specific, measurable goals by par-ticipants. Having a clear idea of the desired outcome is needed to formu-late a plan of action.

Evaluate behavior realistically and use incentives. The third sub-function in self-regulation is self-reaction and it relates to a person’spositive or negative evaluation of a behavior or performance. Self-reac-tion also encompasses the tangible things a person does to reward orpunish self for behavior. In a self-management program participantsneed to be able to realistically evaluate their behaviors. Behavior changeand being able to successfully manage illness are slow, incremental pro-cesses and participants need to understand that change often will nothappen immediately. Realistic appraisal involves being able to see smallchanges. Feedback regarding progress may be helpful in identifyingthese potentially subtle changes. Further, to enhance the likelihood ofpersistence and success, participants need to identify self-incentives


Phys

Occ

up T

her

Ger

iatr

Dow

nloa

ded

from

info

rmah

ealth

care

.com

by

Mic

higa

n U

nive

rsity

on

11/0

4/14

For

pers

onal

use

onl

y.

(Bandura, 1991). Self-incentives are tangible or affective rewards thatwill help them remain motivated to self-manage in the face of slow prog-ress or adversity.

Allow practice of skills and tasks. Efficacious action demands differ-ent skills in different situations. Self-management programs should fo-cus on helping participants develop the requisite skills needed for theidentified goals. Participants need to be able to identify personal andcommunity resources that will support them in skill-building attempts.Participants then should be given encouragement and opportunity topractice new behaviors while enlisting the aid of supports.

Target self-efficacy. In addition to having adaptive skills, personswith chronic illness need to develop the belief in their ability to usethose skills in various situations. Increasing self-efficacy beliefs should,therefore, be a targeted outcome of self-management programs (Holman &Lorig, 1992). Attending to and positively evaluating actual use of skills


TABLE 1. Practice Implications

Programs that aim to promote self-management of Parkinson’s disease ideally should:

1. Teach participants to systematically observe behavior

2. Teach participants to set measurable goals

3. Teach participants to evaluate behavior realistically and use self-incentives

4. Allow practice of skills and tasks

5. Target self-efficacy

6. Use a group format

7. Include family members and caregivers

8. Be integrated with primary healthcare

9. Teach general problem-solving skills

10. Include disease education

To evaluate Parkinson’s disease self-management programs researchers should develop:

1. Explanatory models of how variables of motor impairment, medication usage, symptomseverity, ADL ability, and quality of life relate to self-management

2. Measures of participants’ ability to observe behavior, set measurable goals, and problem-solve

3. Measures of self-efficacy related to tasks and skills covered in the program

4. Measures of communication skills with healthcare practitioners

5. Measures of patient satisfaction with and utilization of healthcare services

6. Measures of participants’ knowledge of Parkinson’s disease pathology

7. Measures of participants’ ability to generalize problem-solving skills beyond theself-management program

Phys

Occ

up T

her

Ger

iatr

Dow

nloa

ded

from

info

rmah

ealth

care

.com

by

Mic

higa

n U

nive

rsity

on

11/0

4/14

For

pers

onal

use

onl

y.

in a relevant context is the most influential means to build self-efficacyas the participant directly witnesses his or her ability to succeed (Bandura,1997).

Use a group format. Research has demonstrated that self-efficacycan also be fostered through modeling and persuasion (Bandura, 1997).Watching a person similar to oneself perform a task successfully canenhance self-efficacy. In addition to modeling behavior, having anotherperson show confidence in a participant’s ability to act efficaciously is aform of verbal persuasion that can enhance self-efficacy. These aspectsof social cognitive theory would suggest that self-management pro-grams be administered in a group format, while still allowing participantsto customize goals and activities to address their own needs. Group for-mat allows participants to learn from each other and can potentially cre-ate a support network that continues after the program has been com-pleted.

Parkinson’s Disease Implications for Self-ManagementProgram Development

Social cognitive theory provided the above suggestions for how tofacilitate behavioral changes to improve health. The next question is,given what is known about Parkinson’s disease, what else should pre-sumably increase the effectiveness of self-management training for thispopulation? Again, the guidelines below are summarized in Table 1.

Inclusion of family members and caregivers. The term “self-manage-ment” implies autonomy and independence in responding to daily diffi-culties. In reality, humans rarely function in isolation. Daily problemsoften arise during interactions with others and are solved in conjunctionwith others (Corbin & Strauss, 1988). For this reason, family membersare often invited to attend self-management sessions (e.g., Clark et al.,1988; Lorig et al., 1999). Family involvement is one way to develop thesupport system needed to change behaviors and implement problem-solving strategies.

Some features of Parkinson’s disease would suggest that family/caregiver involvement is crucial to effective self-management training.For example, Parkinson’s disease is a progressive disorder. Despite bestefforts and intention, impairment is expected to increase over time.Compared to peers without Parkinson’s disease, persons with Parkin-son’s disease are more likely to require assistance to perform activitiesof daily living (ADL) and home management tasks (Strudwick, Mutch, &Dingwall-Fordyce, 1990; Tison, Barberger-Gateau, Dubroca, Henry, &


Phys

Occ

up T

her

Ger

iatr

Dow

nloa

ded

from

info

rmah

ealth

care

.com

by

Mic

higa

n U

nive

rsity

on

11/0

4/14

For

pers

onal

use

onl

y.

Dartigues, 1997). It would, therefore, be logical to involve caregivers inself-management education. Persons with Parkinson’s disease and care-givers would then have a common approach to identifying and solvingproblems that could promote the independence of the person with Par-kinson’s disease in areas of personal importance.

The potential for cognitive impairment accompanying Parkinson’sdisease is a second reason to involve family members in self-manage-ment training. Mild forms of cognitive impairment are frequently seenin formal testing with persons with Parkinson’s disease, while actualdementia is less common (Glosser, 2001). Reviews of research have in-dicated that cognitive impairments with Parkinson’s disease often in-clude difficulties with attention, working memory, and planning andproblem-solving (Brown, Schneider, & Lidsky, 1997) and implicit learn-ing (Lieberman, 2000) or habit learning (Knowlton, Mangels, & Squire,1996). Self-management programs frequently promote the use of cog-nitive strategies to manage illness. Such strategies may be difficult forsome persons with cognitive impairment to employ. This is not to saythat cognitive-based strategies would not be effective for those withParkinson’s disease or should not be attempted, but rather suggeststraining family members may help with the application of such strate-gies.

Similarly, depression can also accompany Parkinson’s disease. Cum-mings (1992) conducted a review of 26 studies in which the frequencyof depression ranged from 4% to 70% of participants with Parkinson’sdisease; mean frequency was 40%. Depression can affect motivationand energy available for self-care. Apathy and amotivation can occurwith or apart from depression (Weiner, Shulman, & Lang, 2001), alsomaking it difficult to engage in self-management behaviors. Given thepotential for depression, it may be helpful to have family members edu-cated in detecting and responding to symptoms of depression assistingwith efforts at management of Parkinson’s disease.

A final reason for involving family members in self-management ed-ucation relates to the effect of Parkinson’s disease on nonverbal behav-ior. Parkinson’s disease can result in facial masking, bradykinesia, tremor,and rigidity. These disease manifestations can disrupt the effortless, au-tomatic use of the face and body to convey mood, thoughts and identity(Pentland, 1991). However, it can be difficult to monitor one’s own non-verbal behavior as we are often not in the position to observe our ownfacial and body activity (DePaulo, 1992). Therefore, the person withParkinson’s disease may not be as sensitive to the severity of theirsymptoms that affect nonverbal behavior, e.g., facial masking. Partici-


Phys

Occ

up T

her

Ger

iatr

Dow

nloa

ded

from

info

rmah

ealth

care

.com

by

Mic

higa

n U

nive

rsity

on

11/0

4/14

For

pers

onal

use

onl

y.

pants in a qualitative study of social interaction and Parkinson’s disease(Lyons & Tickle-Degnen, 2003) remarked that family members werebetter able to observe some disease symptoms and, therefore, the per-spective of family members was important to convey to neurologistswhen considering adjustments to Parkinson’s disease medications. Thisfinding suggests that caregivers can assist in observation of behaviorand Parkinson’s disease progression that is crucial to effective self-management.

Integration with primary care. As stated in the introduction, self-management is one aspect of collaborative management. Self-manage-ment is what the healthcare patient does to take responsibility for pro-moting his or her own well-being. The other half of the equation is whatthe healthcare practitioner does to promote the health and well-being ofthe patient. There is growing consensus that persons with Parkinson’sdisease should be followed by a movement disorders specialist to en-sure that appropriate medical and surgical options are pursued (Bhatiaet al., 2001). In the absence of a cure, persons with Parkinson’s diseasemust continually interact with physicians and, frequently, other healthcarepractitioners to ensure that the disabling symptoms of Parkinson’s dis-ease are minimized as much as possible. Authors argue that best prac-tice for Parkinson’s disease intervention includes a multi-disciplinaryteam of physicians; nurses; occupational, physical, and speech thera-pists; dieticians; and social workers to address the myriad issues of Par-kinson’s disease (Bhatia et al., 2001; Iansek, 1999). Self-managementefforts, thus, should ideally be integrated with medical care (Gruman &Vonkorff, 1997; Holman & Lorig, 1992). Physicians and other healthcarepractitioners need to know the goals the person with Parkinson’s dis-ease has in mind so that they can all be working toward the same, spe-cific outcome. Healthcare practitioners can then use their generalizedknowledge to help persons with Parkinson’s disease to generate solu-tions to the specific problems they wish to address.

Involving healthcare practitioners and family members in self-man-agement programs is not to say that persons with Parkinson’s diseaseare not able to, or should not be expected to self-manage their disease.Intervention efforts should target the person who has Parkinson’s dis-ease, encouraging him or her to direct the nature of involvement withhealthcare practitioners and others. However, considering how familyand practitioners can support self-management is a way to aim for themost optimal outcome. It is an explicit acknowledgement that peopleself-manage illness within a network of social relations.


Phys

Occ

up T

her

Ger

iatr

Dow

nloa

ded

from

info

rmah

ealth

care

.com

by

Mic

higa

n U

nive

rsity

on

11/0

4/14

For

pers

onal

use

onl

y.

Specifically teach problem-solving. Self-management is essentiallythe ability to solve problems in daily life. Each person with Parkinson’sdisease will face different problems and those problems can changeover the course of disease progression. It is impossible to provide per-sons with Parkinson’s disease with solutions for all of the difficultiesthat arise during the day but equipping them with a problem-solvingprocess that they can generalize to each unique situation is beneficial(Holman & Lorig, 1992).

Include disease education. Understanding a particular illness is cru-cial to effective observation and problem-solving (Holman & Lorig,1992). For example, being able to differentiate between a disease symp-tom and a medication side effect will aid in identifying strategies to at-tempt when addressing a problem. Understanding how medicationswork (e.g., understanding how long it takes for L-dopa to reach thebrain and what foods can interfere with this process) can help personswith Parkinson’s disease know how to plan daily activities (Oertel &Ellgring, 1995). Additionally, many strategies for addressing the move-ment disorder are based upon an understanding of Parkinson’s diseasepathology (Iansek, 1999), e.g., using external cues to bypass the prob-lematic issue of self-initiated, automatic movement (Morris, 2000). Un-derstanding why such strategies can work can allow the person withParkinson’s disease to generate other compensatory strategies whensolving problems. Finally, understanding the illness and options for in-tervention can help persons with Parkinson’s disease identify realisticand achievable goals.

IMPLICATIONSFOR SELF-MANAGEMENT PROGRAM EVALUATION

Program evaluation involves identifying variables that are expectedto change as a result of participation in the program. This section re-views such variables, based upon the guidelines presented in this paper.It is important to first consider variables that are traditionally measuredin Parkinson’s disease research, such as motor impairment, medicationusage, disease and/or symptom severity, ability to complete ADL, andquality of life. An explanatory model is needed to understand how thesevariables relate to self-management. Does an improvement in the abil-ity to complete ADL automatically indicate an increase in self-manage-ment skills? Can it ever be assumed that a decrease in symptom severityis a result of more effective self-management of disease? How is quality


Phys

Occ

up T

her

Ger

iatr

Dow

nloa

ded

from

info

rmah

ealth

care

.com

by

Mic

higa

n U

nive

rsity

on

11/0

4/14

For

pers

onal

use

onl

y.

of life related to self-management? Collecting data on these variablescan contribute to the self-management theory development that is neededto answer these questions.

In addition to understanding how traditional outcome measures forParkinson’s disease intervention relate to self-management, new mea-sures need to be developed. Outcome measurement is guided by the re-searcher’s definition of self-management and the theoretical frameworkthat is used to direct the intervention. The first half of this paper was anarticulation of a theoretical orientation for self-management programdevelopment. To broadly summarize, it was suggested that the programshould target self-efficacy, observation and problem-solving skills, anddisease education. To know if such an approach is effective, evaluatorsneed measures of self-efficacy that are specific to the types of tasks andskills addressed in the program (Bandura, 1997). It is also important todevelop measures of a person’s ability to observe behavior, set goals,and solve health-related problems. A measure of practical knowledge ofParkinson’s disease pathology would also be informative. Finally, ifself-management is to be conceptualized as one aspect of collaborativehealthcare management, it would be valuable to study communicationbetween patient and healthcare practitioners, and patient satisfactionwith healthcare encounters.

In addition to rigorous quantitative designs that measure theoreti-cally relevant variables, qualitative research on self-management ofParkinson’s disease is informative for program development and evalu-ation. Qualitative studies like the one conducted by Corbin and Strauss(1988) offer insight into how to define self-management and the phe-nomenology of the construct. From their qualitative analysis of self-care decision making in adults with diabetes, Thorne and Paterson(2001) were able to illuminate the complexities in the healthcare profes-sional’s role in supporting self-management of disease by patients. Morestudies of this nature would direct how practitioners can foster self-man-agement of persons with Parkinson’s disease, in both group and individ-ual formats.

Finally, it is also important to consider transfer of training issues forself-management programs. The assumption of self-management pro-grams is that if you teach generic problem-solving skills then the partic-ipant will be able to generalize that knowledge and apply the skills tonovel situations. This assumption is problematic when considering themotor impairments of Parkinson’s disease as researchers call for task-spe-cific and context-specific intervention (Morris, 2000; Sunvisson, Ekman,Hagberg, & Lokk, 2001). Which tasks and skills can be easily transferred


Phys

Occ

up T

her

Ger

iatr

Dow

nloa

ded

from

info

rmah

ealth

care

.com

by

Mic

higa

n U

nive

rsity

on

11/0

4/14

For

pers

onal

use

onl

y.

to novel situations and which are more difficult? How much repetitionand practice is necessary to enable generalization? Further study of thesegeneralization-of-knowledge questions will influence effective programdevelopment and evaluation.

CONCLUSION

References in both the Parkinson’s disease lay literature (Atwood,1991; Weiner, Shulman, & Lang, 2001) and clinical literature (Suddes,1999) suggest that competency in self-management is an essential skillfor the person with Parkinson’s disease. In a survey of 120 people withParkinson’s disease, issues of self-management, such as knowing howto respond to changing symptom displays and when to seek medicalhelp, were identified as issues of high importance (Hayes, 2002). Col-laborative management involves patient and healthcare practitionersworking together to identify and solve problems to promote the pa-tient’s health in daily life. Both patients and healthcare practitionersneed to learn new skills if they are to partner in this manner (Lorig,2002). Healthcare practitioners’ involvement in and research of self-man-agement training programs can teach professionals how to facilitate theproblem solving skills of their patients. This is the imperative of collab-orative management in healthcare.

REFERENCES

Atwood, G. W. (1991). Living well with Parkinson’s. New York: John Wiley & Sons, Inc.Bandura, A. (1991). Social cognitive theory of self-regulation. Organizational Behav-

ior and Human Decision Processes, 50, 248-287.Bandura, A. (1997). Self-efficacy: The exercise of control. New York: W.H. Freeman and

Company.Barlow, J., Wright, C., Sheasby, J., Turner, A., & Hainsworth, J. (2002). Self-management

approaches for people with chronic conditions: A review. Patient Education andCounseling, 48, 177-187.

Berkow, R., Beers, M. H., & Burs, M. (Eds.). (1999). The Merck manual of diagnosisand therapy (17th ed.). Whitehouse Station, NJ: Merck and Company.

Bhatia, K., Brooks, D. J., Burn, D. J., Clarke, C. E., Grosset, D. G., MacMahon, D. G. etal. (2001). Parkinson’s diseaseated guidelines for the management of Parkinson’sdisease. Hospital Medicine, 62, 456-470.

Brown, L. L., Schneider, J. S., & Lidsky, T. I. (1997). Sensory and cognitive functionsof the basal ganglia. Current Opinion in Neurobiology, 7, 157-163.


Phys

Occ

up T

her

Ger

iatr

Dow

nloa

ded

from

info

rmah

ealth

care

.com

by

Mic

higa

n U

nive

rsity

on

11/0

4/14

For

pers

onal

use

onl

y.

Clark, N. M., Becker, M. H., Janz, N. K., Lorig, K., Rakowski, W., & Anderson, L. (1991).Self-management of chronic disease by older adults. Journal of Aging and Health,3, 3-27.

Clark, N. M., Rakowski, W., Wheeler, J. R. C., Ostrander, L. D., Oden, S., & Keteyian,S. (1988). Development of self-management education for elderly heart patients.The Gerontologist, 28, 491-494.

Cooper, H., Booth, K., Fear, S., & Gill, G. (2001). Chronic disease education: Lessonsfrom meta-analyses. Patient Education and Counseling, 44, 107-117.

Corbin, J., & Strauss, A. (1988). Unending work and care: Managing chronic illness athome. San Francisco: Jossey-Bass.

Cummings, J. L. (1992). Depression and Parkinson’s disease: A review. The AmericanJournal of Psychiatry, 149, 443-454.

Cummings, J. L. (1999). Understanding Parkinson’s disease. Journal of the AmericanMedical Association, 281, 376-378.

de Goede, C. J. T., Keus, S. H. J., Kwakkel, G., & Wagenaar, R. C. (2001). The effectsof physical therapy in Parkinson’s disease: A research synthesis. Archives of Physi-cal Medicine and Rehabilitation, 82, 509-515.

DePaulo, B. M. (1992). Nonverbal behavior and self-presentation. Psychological Bul-letin, 111, 203-243.

Glosser, G. (2001). Neurobehavioral aspects of movement disorders. NeurologicClinics, 19, 535-551.

Gruman, J., & Vonkorff, M. (1997). The patient as a co-manager in the health care sys-tem. Seminars in Dialysis, 10, 329-334.

Hayes, C. (2002). Identifying important issues for people with Parkinson’s disease.British Journal of Nursing, 11, 91-97.

Holman, H., & Lorig, K. (1992). Perceived self-efficacy in self-management ofchronic disease. In R. Schwarzer (Ed.), Self-efficacy: Thought control of action(pp. 305-323). Washington, DC: Hemisphere.

Holman, H., & Lorig, K. (2000). Patients as partners in managing chronic disease:Partnership is a prerequisite for effective and efficient health care. British MedicalJournal, 320, 526-527.

Iansek, R. (1999). Key points in the management of Parkinson’s disease. AustralianFamily Physician, 28, 897-901.

Knowlton, B. J., Mangels, J. A., & Squire, L. R. (1996). A neostraital habit learningsystem in humans. Science, 273, 1399-1402.

Lieberman, M. D. (2000). Intuition: A social cognitive neuroscience approach. Psy-chological Bulletin, 126, 109-137.

Lorig, K. (1993). Self-management of chronic illness: A model for the future. Genera-tions, 17(3), 11-14.

Lorig, K. (2002). Partnerships between expert patients and physicians. Lancet, 359, 814-815.Lorig, K., Sobel, D. S., Stewart, A. L., Brown, B. W., Bandura, A., Ritter, P. et al. (1999).

Evidence suggesting that a chronic disease self-management program can improvehealth while reducing hospitalization: A randomized trial. Medical Care, 37, 5-14.

Lorig, K. R., Ritter, P., Stewart, A. L., Sobel, D. S., Brown, W. B., Jr., Bandura, A. etal. (2001). Chronic disease self-management program: 2-year health status andhealth care utilization outcomes. Medical Care, 39, 1217-1223.


Phys

Occ

up T

her

Ger

iatr

Dow

nloa

ded

from

info

rmah

ealth

care

.com

by

Mic

higa

n U

nive

rsity

on

11/0

4/14

For

pers

onal

use

onl

y.

Lyons, K. D., & Tickle-Degnen, L. (2003). Dramaturgical challenges of Parkinson’sdisease. OTJR: Occupation, participation, and health, 23, 27-34.

Mazzuca, S. A. (1982). Does patient education in chronic disease have therapeutic value?Journal of Chronic Diseases, 35, 521-529.

Morris, M. E. (2000). Movement disorders in people with Parkinson disease: A modelfor physical therapy. Physical Therapy, 80, 578-597.

Murphy, S., & Tickle-Degnen, L. (2001). The effectiveness of occupational ther-apy-related treatments for persons with Parkinson’s disease: A meta-analytic re-view. American Journal of Occupational Therapy, 55, 385-392.

Neufeld, P., & Kniepmann, K. (2002, May). Developing wellness programs for self-man-agement in persons with chronic disabilities. Workshop presented at the annualconference and exposition of the American Occupational Therapy Association, Mi-ami, FL.

Oertel, W. H., & Ellgring, H. (1995). Parkinson’s disease: Medical education and psycho-social aspects. Patient Education and Counseling, 26, 71-79.

Pentland, B. (1991). Body language in Parkinson’s disease. Behavioural Neurology, 4,181-187.

Strudwick, A., Mutch, W. J., & Dingwall-Fordyce, I. (1990). Parkinson’s disease–Func-tional impairment and who helps. Clinical Rehabilitation, 4, 213-216.

Suddes, M. (1999). Common nursing problems in Parkinson’s disease. Elderly Care,11(4), 31-34.

Sunvisson, H., Ekman, S. L., Hagberg, H., & Lokk, J. (2001). An education programmefor individuals with Parkinson’s disease. Scandinavian Journal of Caring Sciences,15, 311-317.

Thorne, S. E., & Paterson, B. L. (2001). Health care professional support for self-caremanagement in chronic illness: Insights from diabetes research. Patient Educationand Counseling, 42, 81-90.

Tison, F., Barberger-Gateau, P., Dubroca, B., Henry, P., & Dartigues, J.-F. (1997). De-pendency in Parkinson’s disease: A population-based survey in non-demented el-derly subjects. Movement Disorders, 12, 910-915.

Von Korff, M., Gruman, J., Schaefer, J., Curry, S. J., & Wagner, E. H. (1997). Collabo-rative management of chronic illness. Annals of Internal Medicine, 127, 1097-1102.

Weiner, W. J., Shulman, L. M., & Lang, A. E. (2001). Parkinson’s disease: A completeguide for patients and families. Baltimore: Johns Hopkins Press.

RECEIVED: 05/15/03REVISED: 06/26/03

ACCEPTED: 07/05/03


Phys

Occ

up T

her

Ger

iatr

Dow

nloa

ded

from

info

rmah

ealth

care

.com

by

Mic

higa

n U

nive

rsity

on

11/0

4/14

For

pers

onal

use

onl

y.

self-management of parkinson's disease: guidelines for program development and evaluation

Documents