employment needs of people with multiple sclerosis: a review of current literature and application...
TRANSCRIPT
Employment Needsof People with Multiple Sclerosis:
A Review of Current Literatureand Application
to Occupational Therapy Practice
Toni Van Denend, MS, OTR/L
ABSTRACT. Individuals with multiple sclerosis (MS) are often diag-nosed during a period of life when career exploration and developmentoccurs. The purpose of this paper is to examine the literature that has beenpublished from 1996 to 2004 about the employment needs of people withMS in order to build upon Rumrill’s (1996a) text and develop a set oftreatment priorities for occupational therapists working with this popula-tion. The current literature highlights the potential employment chal-lenges and incentives, programmatic barriers, and challenges specific towomen with MS. The literature also highlights the changing meaning ofwork, the importance of coping with these changes, and the scope ofneeded intervention. Outlined are occupational therapy treatment priori-ties for people with MS in the performance area of work. [Article copiesavailable for a fee from The Haworth Document Delivery Service: 1-800-HAWORTH. E-mail address: <[email protected]> Website: <http://www.HaworthPress.com> © 2006 by The Haworth Press, Inc. All rights re-served.]
Toni Van Denend is Project Coordinator, Aging with MS: Unmet Needs in theGreat Lakes Region, University of Illinois at Chicago (MC 811), 1919 West TaylorStreet, Chicago, IL 60612 (E-mail: [email protected]).
The author would like to thank Marcia Finlayson, Laura McKeown, JulieDalMonte, Carolyn Wilkens, Priyanka Mallik, Jennifer Garcia, Eynat Shevil and PoojaSrinivasan for their feedback to earlier versions of this article.
Occupational Therapy in Health Care, Vol. 20(1) 2006Available online at http://www.haworthpress.com/web/OTHC
© 2006 by The Haworth Press, Inc. All rights reserved.doi:10.1300/J003v20n01_04 61
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KEYWORDS. Employment, multiple sclerosis, occupational therapy,literature review
Multiple Sclerosis (MS) is a chronic, often disabling neurologicalcondition that is frequently diagnosed between the ages of 20 and 50(National Multiple Sclerosis Society Research Briefs, 2002); the periodof life between the ages of 20 and 40 is when one often explores, estab-lishes, and maintains a career (Rumrill, 1996a). Although MS does notsignificantly reduce life expectancy (Miller, Hornbrook, & Purdie,1992; Weinshenker, 1995), the disease symptoms and progression varydramatically across individuals. Current statistics depict a higher unem-ployment rate among individuals with MS (72%) as compared to thegeneral adult population (36%) (Johnston et al., 2001). Additional stud-ies found that more than 90% of people with MS have worked at somepoint in their lives, yet only 25-40% are currently employed (LaRocca,1995; Rumrill, 1996a; Rumrill, Roessler, & Cook, 1998). These per-centages are significant, considering that the literature shows that em-ployment has a positive effect on overall life satisfaction (Bing, 1989;Perron & McKay, 1997). The worker role can also provide a social out-let, daily structure and routine, a sense of accomplishment and success,and a means for economic gain (Perron & McKay, 1997).
In Rumrill’s (1996a) seminal text on MS and employment, he identi-fied a number of broad factors that are associated with unemploymentfor individuals with MS including demographic variables (e.g., being awoman, lower educational attainment, increased age in combinationwith longer duration of MS), physical symptoms (e.g., fatigue, visualproblems, bladder dysfunction, fluctuation of MS symptoms), cognitivefactors (e.g., memory impairment, attention and concentration impair-ment, confusion), workplace variables (e.g., employer attitudes, reac-tions of coworkers, the availability of on-the-job accommodation) andprogrammatic variables (e.g., knowledge of Americans with Disabili-ties Act [ADA], Supplemental Security Income [SSI]). A variety of re-habilitation professionals provide services to individuals with MS tomeet employment challenges, including occupational therapists. Occu-pational therapists utilize a variety of work-related intervention tech-niques such as ergonomic interventions and accessibility consulting(Innes, 1997), as well as seating and positioning in the workplace, jobanalyses, and environmental considerations (Berg Rice, 1998; Cook &Hussey, 1995; Smith, 1989). Nevertheless, little research addressingoccupational therapy services specifically for the needs of workers or
62 OCCUPATIONAL THERAPY IN HEALTH CARE
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potential workers with MS has been presented in the literature. The pur-pose of this paper is to examine the related literature that has been pub-lished from 1996 to 2004 about the employment needs of people withMS, as well as to use this information in combination with Rumrill’s(1996a) book to develop a set of treatment priorities for occupationaltherapists working with this population.
METHODOLOGY
A multi-step approach was utilized to complete the review. Only journalarticles were included that were in the English language, published from1996 to October 2004 and addressed MS and employment directly. A com-puterized search was done using the following databases: MEDLINE,PsychINFO, PubMed, AARP AgeLine, WilsonSelectPlus, CINAHL, Jour-nals@Ovid, All EBM Reviews, and Health & Psychosocial Instruments. Atotal of 25 articles were identified. A content analysis approach was utilizedto examine the content of each piece of literature. The material was synthe-sized and organized into a table format examining article purpose, approach/methodology, and results/key findings.
RESULTS
Table 1 provides a summary of the articles included in this literaturereview. The results of the review address the following: (1) Purpose;(2) Approach or Methodology; and (3) Results and Key Findings.
Purpose of Included Articles
Articles explored such things as the experiences of individuals withMS related to employment (Johnson et al., 2004a; Salomone &O’Connell, 1998; Yorkston et al., 2003), job satisfaction (Roessler,Rumrill, & Fitzgerald, 2004a), and describing the predictors related tounemployment (Busche, Fisk, Murray, & Metz, 2003; Roessler, Fitz-gerald, & Rumrill, 2001; Roessler, Rumrill, & Fitzgerald, 2004b). Anumber of studies explored specific issues pertinent to the employmentstatus of individuals with MS, such as policy barriers (Gordon,Feldman, & Shipley, 1997; O’Day, 1998; Roessler et al., 2003; Rumrill,Roessler, & Koch, 1999), environmental barriers or work-site specificbarriers (Rumrill et al., 1999; Rumrill, Steffen, & Sumner, 1996), and
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64 OCCUPATIONAL THERAPY IN HEALTH CARE
TABLE 1. Summary of Included Articles
Article Purpose Approach or Methodology Results and Key Findings
Roessler,Rumrill, &Fitzgerald(2004a)
Identify factors affectingjob satisfaction for peoplewith multiple sclerosis(MS).
Design: Mail out survey.Sample: 555 employed participants of a largersample. Members of ten National MultipleSclerosis Society (NMSS) chapters across the US.Response rate 28%. Average age 46 years.
The best predictors of job satisfactionamong people with MS were incomeadequacy and job/person match. Factorsthat did not remain in the model includeannual income, perceived severity of MS,number of MS symptoms, presence ofcognitive impairment, and expectation ofbeing employed in one year.
Roessler,Rumrill, &Fitzgerald(2004b)
Examine the disease-and-demographic model forelucidating employmentoutcomes for people withMS.
Design: Backward stepwise logistic regression ofsurvey data.Sample: Random sample from 1,310 members of10 NMSS chapters across the United States(US). Response rate 28%.
Predictors of unemployment include lowereducational attainment (i.e., less than highschool), and severity and persistence ofsymptoms (i.e., chronic progressive).
Johnson et al.(2004a)
Better understand the costand benefits experiencedby people with MS in theworkplace.
Design: Face-to-face qualitative interviews, withfollow-up interviews.Sample: Convenience sampling through a localMS Association. 16 participants, including 14women and 2 men, aged 27 to 62.
Themes and sub-themes included suchthings as the value of working (i.e., financialgain, health care benefits, identity, self-esteem, social contact), the cost of working(i.e., curtailment of non-workactivities), work being therapeutic (i.e.,decreased focus on symptoms), barriers towork (i.e., fatigue, cognitive changes, stress),and concerns about others’ reactions toaccommodation requests.
Johnson et al.(2004b)
Provide an overview ofpublished literaturerelevant to the employmentof people with MS.
Design: Literature review. Authors review trends in medicalmanagement for MS, changing health carepolicies and trends in employment. Authorsdiscuss individual barriers to employment(e.g., fatigue, cognitive changes, depression),and societal and programmatic barriers (e.g.,attitudes, accommodations).
Roessler et al.(2003)
Present findings from anational survey of theissues affecting jobacquisition and retentionof people with MS.
Design: Mail out survey, using participatorybased focus groups to develop researchinstrument.Sample: Random sample from 1,310 members of10 NMSS chapters across the US.Response rate 28%. Age range 21 to 89.
The three largest employment relatedsupports include being treated with respectby service providers, treated fairly when theyapply to work and being encouraged to takecontrol of their lives. The three most pressingareas include employment practices andpolicies, Social Security programs and ser-vices and health care.
Roessler &Rumrill (2003)
Validate Hershenson’ssystems approach fordiagnosing the employmentbarriers faced by peoplewith MS and to describeone intervention (i.e.,consulting) to reducethose barriers.
Design: Review and application of theoreticalframework.
Highlights the importance of taking asystemic perspective when working withinwork rehabilitation with people with MS. Thesystems addressed include: Consumersystem (e.g., individuals with MS, families,peer groups), Functional system (i.e.,employment environment), Providersystem (e.g., rehabilitation services) andContextual system (i.e., disability policyinitiatives and societal attitudes).
Yorkston et al.(2003)
Examine the experiencesof individuals with MSregarding everyday work.
Design: Naturalistic qualitative study.Sample: Convenience sample with 11 women and3 men with MS, average age 44 andaverage duration since diagnosis 8 years.
2 major themes identified:Defining the work (e.g., setting priorities) andchanging how things get done (e.g.,constructing new strategies). As people withMS experienced functional changes, thefindings highlight how people cope with thesechanges and continue to participate andaccomplish tasks.
Busche et al.(2003)
Determine variablesand risk factors associatedto the unemployment ofindividuals with MS.
Designh: Cross sectional design with structuredinterviews at 2 data collection points 2.5 years apart.Sample: Stratified random sample bydisability levels from population based clinicdatabases. Participants include 96 individualsunder the age of 65; average age of 47.
Following 2.5 years, only 40% of original sam-ple remained employed. Short-term predictorsof unemployment: greater disability, progressivedisease course, longer disease duration, andolder age.
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Article Purpose Approach or Methodology Results and Key Findings
Roessler,Fitzgerald,& Rumrill(2001)
Contribute to knowledge baseregarding the factors related toemployment for people with MS.
Design: Quantitative mail-out survey.Sample: Random sample from mailing listsof a state chapter of the NMSS.Response rate 47%. Participants include139 people with MS, with an average ageof 43.
The key predictors to maintenance ofemployment include a college degree,fewer cognitive limitations and a morebenign, less severe course of MS.
Bishop,Tschopp,& Mulvihill(2000)
Discuss vocational aspects of MS &epilepsy, focusing on bestrehabilitation practices and commonemployment problems experiencedby these populations.
Design: Literature review. Article highlights areas of strengths invocational rehabilitation for people withMS and epilepsy. In the area ofemployment development: Empowerpeople with MS in job search,preparation and interview skills,disseminate information about theAmericans with Disabilities Act (ADA) andbe grounded in client’s goals. Retentionissues: Need for an understandingemployer, good social contacts withco-workers and employers, access toadaptable work settings, and modes oftransportation. Authors recommendexploring both ecological and individualfactors.
Dyck &Jongbloed(2000)
Examine employment issues forwomen with MS and their workplaceexperiences, focusing analysis onthe social and institutionaldimensions of the environment.
Design: Combination of in-depth qualitativeinterviews and quantitative mail outsurveys.Sample: All recruited by conveniencesample via a neurological clinic and localbranch of the NMSS. Qualitative portionincluded 54 women ranging in age from 25to 49 years of age. Quantitative mail outsurvey consisted of 534 women betweenthe ages of 19 to 60. Response rate 66%.
Study findings confirm previous studiesthat indicate disease factors (e.g.,physical and cognitive impairment) andnon-medical factors (e.g., modifying workconditions and home support) influenceemployment. Study offers new insightinto the context and meaning behindemployment needs and challenges forwomen (i.e., work has an attachedsocial meaning, gender influences theexperience of having a disability, andthe negotiation of a “disabled identity”).
Rumrill et al.(2000)
Review existing research in order todescribe employment experiencesand concerns of people with MS.
Design: Literature review Study highlights factors associated withunemployment as identified in theliterature including demographiccharacteristics, physiological symptoms,cognitive dysfunction, psycho-affectivefactors, and workplace variables.Authors provide recommendations forintervention with people with MSincluding: eligibility and order of selec-tion in vocational rehabilitation, a focuson job retention, information concerningdisability-related legislation, home-based employment, and collaboration withhealth care providers andconsumer advocacy organizations.
Rumrill,Roessler, &Koch (1999)
Describe the employment concernsof people with MS and discuss waysthat rehabilitation practitioners,researchers, and policy makers candevelop effective interventions.
Design: Mail out survey using aparticipatory-based work group to developthe research instrument.Sample: Random sample from a regionalchapter of the NMSS. Response rate 47%.227 participants (160 women and 67 men),ranging in age from 20 to 79.
The high priority areas as identified by thework group were divided into employmentstrengths and employment problems.High importance items include healthinsurance coverage, potential to work andtake control of their lives, wages andbenefits, and workplace accommodations.Challenging issues include unfair treat-ment by employers in the hiring process,lack of access to service providers whounderstand their needs, lack of access tosocial security programs, lack of optimismregarding their future, and issues relatedto re-entering the workforce. Findingsindicate strong influence of environmentalchallenges related to unemploymentstatus.
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TABLE 1 (continued)
Article Purpose Approach or Methodology Results and Key Findings
Rumrill,Roessler,& Cook (1998)
Describe the medical andpsychological aspects of MS, theeffect the illness takes on one’scareer, and present findings from astudy that attempted to re-engageunemployed people with MS in workroles.
Design: Intervention study with anexperimental and control group.Sample: Convenience samplerecruiting by NMSS staff members inMidwest. Consisted of 37 participants,with a mean age of 42 years. Twogroups using time sampling methodsto place individuals into groups: onegroup given Accommodation PlanTeam seminars (i.e., establishingresource networks, strengtheninginterviewing skills, consider needs forreasonable accommodations,understand rights, formulate goal-directed plans) and control groupreceiving two telephone contacts andpacket of instructional information.
Two methods appear to be equally effective inhelping people with MS obtain employment.Study findings suggest that “leastintervention” services, such as providinginformation about the ADA and reasonableaccommodations, details about workincentives and job seeking tips may beadequate to encourage people with MS tore-engage in employment.
O’Day (1998) Determine whether policiescontained within federal programs(such as income maintenance,health care, and vocationalrehabilitation) influence theunemployment status of peoplewith MS.
Design: Naturalistic qualitativeinterviews.Sample: Convenience sample usinglocal consumer organizations, hospitalclinics, and by word of mouth. Consistedof 16 participants, between the ages of25 to 45.
Three areas of barriers identified, includepersonal barriers (e.g., severity ofdisability), societal barriers (e.g., ignoranceand misconceptions about MS), andprogrammatic barriers (e.g., lack of knowl-edge regarding Social Security Disability In-surance (SSDI), health care, ADA, andvocational rehabilitation). Findings indi-cate that public programs can often pro-vide barriers to employment, such as thecomplexity of SSDI/Social Security Income(SSI).
Salomone& O’Connell(1998)
Gather information about the mannerand extent that MS influences careerdevelopment.
Design: Naturalistic design with semi-structured qualitative interviews.Sample: Letter sent to 876 potentialvolunteers from the New York NMSS.Then chose 12 participants (6 males, 6females with a mean age of 45), basedon a stratified random sample of gender,employment status, and age. 12%response rate.
Two general themes emerged: the meaningof career and work and the implications of MSto career. The key vocational needs identified:being of help or working with people; utilizingone’s abilities; engaging in activity and havingvariety in one’s job.
Gordon,Feldman,& Shipley(1997)
Explore the illness and employmentpatterns of persons with MS and toexamine their knowledge of the ADA.
Design: Mail out survey.Sample: Convenience sampling ofsupport group members yielding 141individuals with MS, 93 females and 48males, with a mean age of 47.Response rate 37%.
Common challenges amongunemployed individuals with MS: physicalcondition, problems with transportation,work schedules, employer attitudes, andinability to find a job with MS. 28% of sam-ple had not heard of the ADA. Only 57% ofthose who were knowledgeable believedthe law would be helpful. Findingshighlight the importance of awareness andusage of full range of options of the ADA.
Rumrill,Roessler,& Denny(1997)
Present a self-efficacy approach tocareer maintenance for persons withMS.
Design: Intervention study withexperimental, prompt, and controlgroup.Sample: Convenience sample viaNMSS newsletters, direct referralsfrom physicians, support groups, andmail solicitation yielding 51 employedpersons (35 women and 16 men) withMS, ranging in age from 21 to 63.Participants randomly assigned to 3groups (control–outcome data only,prompt–outcome data with verbalprompting and progressive request,and model–outcome data with 2personal meetings including a role playactivity).
Overall the intervention had a non-significant effect on participants’ self-reportedattitudes and accommodations activities, butdid have significant effect on career self-efficacy measures. Findings highlight changein self-efficacy, with limited behavioralchange.
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Article Purpose Approach or Methodology Results and Key Findings
LaRocca, Kalb, &Gregg (1996)
Evaluate a collaborative modelbetween health care providers andemployment specialists that wouldaddress employment retention forpeople with MS.
Design: Intervention study withexperimental and control group with aone year follow-up.Sample: Convenience sample fromindividuals typically seen at a Researchand Training Center for MS.Randomized consent design to eithercontrol or experimental group yielding43 individuals with MS, with a mean ageof 41.6. The experimental group wasgiven a medical/counseling componentand an employment services component(i.e., packet of information regardingwork related matters such as disclosure,the ADA, and reasonableaccommodations). Control groupreceived standard medical care(unspecified) and two telephone callsfrom an employment specialist inquiringabout their work status within a 12-monthperiod.
Findings indicate that most participants didnot follow through on recommendations.Authors suggested that most workingindividuals with MS either do not have anyproblems or do not wish to acknowledgeproblems. If participants did not see animmediate need for change, they seemedreluctant to consider the job retention material(i.e., they really only wanted services whenan immediate employment needmaterialized).
Rumrill, Steffen,& Sumner (1996)
Examine on-the-job challenges foremployees with MS to continueworking and describe the corecomponents of a number of jobretention interventions.
Design: Literature review. Frequent challenges noted in the literatureinclude accessibility needs, negativeemployer and co-worker attitudes, and jobrelated physical and cognitive functions (e.g.,handling objects, walking, working an 8 hourshift, repetitive work, fast paced work). Jobretention interventions included: removingbarriers at the worksite, on-the-job needsassessment, self-advocacy skills with theprovision of information regarding the ADA,comprehensive job analysis techniques, andemployer consultation.
Rumrill et al.(1996)
Demonstrate job placementinterventions for people with MS(i.e., MS Back-to-Work: OperationJob Match, the Job RaisingProgram, Return-To-Work, and theCareer Possibilities Project) thathave potential to improve careerdevelopment and maintenance.
Design: Review of several employmentinterventions for people with MS.
Reviewed the following interventions:∑ MS back-to-work: Operation job
match.∑ The job raising program.∑ The return-to-work program.∑ The career possibilities projectArticle highlights that each interventionfocuses on personal, social, and task-relatedfactors that impact career obtainment,maintenance, and development.
Gulick (1996) Compare health status, perceivedwork challenges, and copingstrategies of women with MS.
Design: Secondary analysis.Sample: 408 women recruited via theNMSS below the age of 65. Groupswere divided into young (averageage 37) and middle-aged (averageage 52.5 years of age). Theinstruments used include: ADLSelf-Care Scales (ADL-MS), the MS-Related Symptoms Scale (MS-RS), theWork Assessment Scale–Impediments(WAS-I), The Work Assessment Scale–Enhancers (WAS-E), and ThePersonal Data Inventory.
A higher level of education had a positiveinfluence on activities of daily living (ADL)functioning and perception of workimpediments. A longer duration of MS hada negative influence on ADL and workfunctioning. Employed women experiencedhigher levels of mental and emotionalsymptoms (anxiety, depression, loneliness).Highlights the importance of examining theadequacy of coping strategies, particularlyamong middle-aged women.
Roessler (1996) Present outcome measurementinstruments related to the personand the environment in the workforce.
Design: Review of 5 instruments. Discusses the importance of measuringpersonal barriers, as well as environmentalbarriers. Discusses the following scales:• Work assessment scale (WAS).• ADL Self-care scale (ADL-MS).• MS-Related Symptoms Checklist (MS-RS).• Work experience survey (WES).• Goldberg ScaleOutlines information about each scale, includingpsychometric properties as available.
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issues specifically related to women with MS (Dyck & Jongbloed,2000; Gulick, 1996; Jongbloed, 1996). Three articles provided an over-view of the literature relevant to the employment of people with MS(Johnson et al., 2004b; Rumrill, 1996b; Rumrill, Tabor, Hennessey, &Minton, 2000). Five articles discussed employment interventions or out-come measures (Bishop, Tschopp, & Mulvihill, 2000; LaRocca, Kalb, &Gregg, 1996; Rumrill, Roessler, & Cook, 1998; Rumrill, Roessler, & Denny,1997; Rumrill, Steffen, Kaleta, & Holman, 1996; Roessler, 1996).
Approach/Methodology of Included Articles
Authors utilized a variety of approaches or methodologies to obtaininformation related to the employment needs of people with MS, in-cluding qualitative design using focus groups or face-to-face inter-views, mail-out surveys to collect more quantitative information, acombination of the two aforementioned designs, secondary analysis,and experimental design. In addition, a number of more review type ar-ticles were identified. No specific type of approach or methodology
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TABLE 1 (continued)
Article Purpose Approach or Methodology Results and Key Findings
Rumrill (1996b) Outline the demographic, medical,psychological, sociopolitical, andwork-related aspects of MSrelated to unemployment.
Design: Literature review. Variables related to unemployment:∑ Demographical: being a woman, being
from a family with a higher socio-economic status, and increased age.
∑ Physiological: physical limitations (i.e.,fatigue, visual impairments, ambulatoryproblems, loss of coordination, pain,and incontinence).
∑ Psychological (e.g., emotional problems,job dissatisfaction) and cognitivesymptoms (e.g., decreased ability tolearn new information, diminished shortterm and long term memory).
∑ Worksite accessibility, employerattitudes, and availability of on-the-jobaccommodations.
∑ Programmatic: SSI/SSDI and otheremployment assistance programs.
Jongbloed (1996) Examine the personal, immediateand larger environment factors thatinfluence the employment status ofwomen with MS.
Design: Combination of naturalisticin-depth qualitative interviews and mailout surveys.Sample: Two phases of study includenaturalistic approach with 31 womenconveniently sampled through a localMSS or an MS clinic and a primarilyquantitative phase, sampled from 812women from the same MS clinic yielding534 consenting women aged 19-60.Response rate of 66%.
Factors contributing to maintain employmentinclude a flexible working environment andemployer, understanding and supportivefamily members, and reduction in social lifeto preserve energy. Factors contributing todiscontinuing employment include symptoms ofMS, inadequate energy to do paid work andhousework, childcare, and job stress. Factorsthat discouraged women from looking for workwere an inability to perform paid work, apreference to spend energy on friendshipsand community life and the loss of currentincome.
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dominated, however, an increase in the proportion of naturalistic stud-ies was noted from 1998 to 2004. A summary of the approach ormethodology of each of the included articles can be found in Table 1.
Results and Key Findings of Included Articles
The findings from this review indicate that current research is consis-tent with factors reported by Rumrill (1996a). The literature also addeddepth to and extended information regarding employment incentivesand barriers, programmatic issues, women’s work related issues, themeaning of work and coping with changing needs, and the scope ofneeded employment-based intervention for people with MS.
Employment Incentives and Barriers
The included quantitative and review studies both confirmed existingliterature and added new insight into the employment incentives andbarriers for individuals with MS. The incentives to employment includesuch things as insurance coverage, being treated with respect by serviceproviders, potential to work, earn wages and benefits (Johnson et al.,2004a; Roessler et al., 2003; Rumrill, Roessler, & Koch, 1999), feelinghelpful, working with people, utilizing one’s abilities, and engaging inactivity (Salomone & O’Connell, 1998). Environmental incentives in-clude having an understanding employer, ability to take sick time whenneeded, and having flexible work hours (Jongbloed, 1996). Bringingthese incentives together, Roessler, Rumrill, and Fitzgerald (2004)added that the job/person match was one of the best predictors of jobsatisfaction for people with MS.
The barriers to work include disease-related factors, societal factors, andprogrammatic factors. The commonly cited disease-related factors includeincreased disease duration, older age (Busche, Fisk, & Murray, 2003;Rumrill, 1996b), persistent course of symptoms (Roessler, Rumrill, & Fitz-gerald, 2004; Busche, Fisk, & Murray, 2003; Dyck & Jongbloed, 2000;O’Day, 1998; Roessler, Fitzgerald, & Rumrill, 2001), lower level of educa-tion (Gulick, 1996; Roessler, Fitzgerald, & Rumrill, 2001; Roessler,Rumrill, & Fitzgerald, 2004), physical limitations (Gordon et al., 1997;Rumrill, 1996b; Rumrill, Tabor, Hennessey, & Minton, 2000), and cogni-tive limitations (Dyck & Jongbloed, 2000; Johnson et al., 2004a; Johnsonet al., 2004b; Roessler, Fitzgerald, & Rumrill, 2001; Rumrill, 1996b;Rumrill, Tabor, Hennessey, & Minton, 2000). Johnson et al. (2004a) dis-cussed the negative effect of the combination of fatigue, cognitive changes,
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and stress on job performance. The common societal or workplace factorsinclude unfair treatment during hiring, inflexible work schedules, lack ofunderstanding service providers, employers or coworkers (Dyck &Jongbloed, 2000; Gordon, Feldman, & Shipley, 1997; Johnson et al.,2004b; Jongbloed, 1996; O’Day, 1998; Roessler et al., 2003; Rumrill,1996b; Rumrill, Roessler, & Koch, 1999; Rumrill, Tabor, Hennessey, &Minton, 2000) and concerns over others’ reactions to accommodation re-quests (Johnson et al., 2004b).
Programmatic Barriers
In addition to the disincentives discussed above, programmatic vari-ables can also impede the maintenance or return to work for individualswith MS. The literature discussed lack of accessible transportation, socialsecurity benefits, on-the-job accommodations (Johnson et al., 2004a;Johnson et al., 2004b; Rumrill, Steffen, & Sumner, 1996), and lack ofknowledge regarding the Americans with Disabilities Act (ADA)(Dyck & Jongbloed, 2000; Gordon et al., 1997; O’Day, 1998; Rumrill,1996b). Although initially developed to support the needs of individualswith disabilities, some federal policies and programs act as barriers to re-turning to or maintaining employment for participants. For example,O’Day (1998) found that participants felt they needed to receive benefitsindefinitely. Studies have also supported the overall lack of knowledge orawareness regarding the federal and state programs related to employ-ment for individuals with disabilities (Rumrill, 1996b; Gordon et al.,1997; Rumrill, Roessler, & Koch, 1999; Rumrill, Steffen, & Sumner,1996). For example, Gordon et al. (1997) found that 28% of participantshad not even heard of the ADA. Study participants were often found to beunaware of the full scope of services and rights provided under the ADA,as well as by other federal and state programs and legislation. Current re-search supports the incorporation of this type of information into inter-vention, as Rumrill, Roessler, and Denny (1997) noted positive outcomesin employment self-efficacy following an intervention involving the dis-semination of ADA-related information.
Considerations Specifically for Women with MS
For women, having understanding family members, help with house-hold care tasks and child care, and the reduction in social life to con-serve energy are important to sustaining the worker role (Jongbloed,1996). This finding is consistent with previous studies as noted in
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Rumrill (1996a), but elaborates upon unique challenges experienced bywomen with MS in the work force. For example, the literature discussesthe challenge of coordinating the roles of mother, friend, communityparticipant, household maintainer, and worker (Jongbloed, 1996). Inaddition, the physical environment and the social context, in combina-tion with interpreting the meaning of a “disabled identity” within theworkplace, are important considerations for women with MS (Dyck &Jongbloed, 2000, p. 344). Adapting to and coping with disease-relatedchanges are important in the life of a woman with MS considering theworker role (Gulick, 1996).
Changing Meaning of Work and Coping
Naturalistic studies discussed the meaning and importance of work, aswell as how individuals with MS cope with and change their expectationsof how work is accomplished (Salomone & O’Connell, 1998; Yorkstonet al., 2003). Specifically, Salomone, and O’Connell’s (1998) partici-pants discussed the importance of earning a salary that met their basicsurvival and comfort needs, as well as meeting social and activity en-gagement needs. In a study by Yorkston et al. (2003), participants dis-cussed prioritizing, planning ahead by learning about resources and jobrelated requirements, and being an active decision maker. Likewise, par-ticipants in this same study discussed how they have changed the way ac-tivities are completed, namely the importance of becoming aware offactors that cause this necessary change and developing covert (e.g., gen-eral positive affirmations) and overt strategies (e.g., organizational strate-gies) to cope with these challenges. Gulick (1996) examined Lazarus andFolkman’s stress appraisal and coping theory in relation to the adequacyof coping strategies of persons with MS in consideration of the workerrole. Gulick (1996) found that incorporating work modifications, increas-ing assistive device usage, and having increased family and coworkersupport may lessen the perceived work barriers of women with MS.
Scope of Needed Employment-Based Intervention
Often of interest and importance to clinical occupational therapists arethe results of experimental-based studies, including the intervention designand the outcomes, in order to further inform evidence-based practice. Re-sults of intervention-based studies in this review indicate minimal behaviorchanges (i.e., requesting accommodations in the workplace and recom-mendation to seek a consultation) across participants overall (LaRocca,
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Kalb, & Gregg, 1996; Rumrill, Roessler, & Denny, 1997). Rumrill, Roessler,and Denny (1997) found notable self-efficacy change, but no change in be-havior following a group-based intervention assisting individuals to iden-tify, understand, and discuss their accommodation needs and legal rights.LaRocca, Kalb, and Gregg (1996) offered participants a two-componentprogram consisting of a medical counseling component and an employ-ment services component. Authors suggest, however, that most workingindividuals with MS either do not have challenges or do not wish to ac-knowledge challenges, and that a preventative attitude was not adopted byparticipants. Rumrill, Roessler, and Cook (1998) found that both the exper-imental group (i.e., accommodation planning seminars) and the controlgroup (i.e., traditional dissemination of information) were equally as effec-tive in helping people with MS obtain employment. The authors suggestthat the “least intervention” approach, such as simply providing informa-tion about available programs and services, may be adequate to encouragepeople with MS to return to work.
DISCUSSION
The results of this literature review confirm and elaborate a variety ofpotential factors that influence the employment status and satisfaction ofindividuals with MS. Although only one article of those reviewed dis-cussed occupational therapy, MS, and employment issues specifically(Dyck & Jongbloed, 2000), the related knowledge summarized here canfurther inform occupational therapy research and practice. As suggested byRumrill, Hennessey, and McNary (2001), many people with MS may nothave symptoms and limitations severe or persistent enough to merit en-trance into state vocational rehabilitation services. However, occupationaltherapists in acute rehabilitation, inpatient or outpatient rehabilitation, adultday care or home care may be the initial, primary or only contact that willprovide an evaluation and treatment plan addressing the performance areaof work. An occupational therapist in this position should be informed andprepared to address the area of work during assessment and intervention inorder to attend to the potential future work related needs of clients with MS.At this crucial point of contact, potentially when few other health care pro-fessionals will intervene, an occupational therapist can address concernsabout work and provide pertinent information to clients (e.g., ADA relatedinformation, Social Security related information, etc.).
Table 2 incorporates information from Rumrill’s (1996a) text, findingsfrom this review, and outlines treatment priorities for occupational thera-
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pists in the performance area of work with people with MS. Areas of appli-cation include such things as development of communication strategieswith family, coworkers and employers, physical and cognitive compensa-tory strategies, on-the-job accommodations, and provision of informationrelated to federal and state policies and programs. Occupational therapistshave skills to address these areas of need, but the body of literature for ourrole in the area of employment with people with MS needs to be strength-ened. Specifically, studies that are prospective in design examining func-tional status change over time are indicated. In order to continue the bodyof knowledge around intervention-based studies in the area of work, occu-pational therapists could develop a comprehensive program incorporatinga holistic client-centered approach to examine treatment outcomes.
LIMITATIONS
Very specific methodology was utilized in this review in order to beclear and focused. However, this literature review is limited by theavailability of articles only within the search engines, with the specific
Toni Van Denend 73
TABLE 2. Employment-Based Priorities for Occupational Therapy Intervention
Employment challenges for individuals with MS Priorities for occupational therapy intervention
Demographical variables – Highlight the importance of a supportive home environment and assistance with homeresponsibilities for maintaining employment status.
– Work with families in order to develop home task lists and delegation of responsibilities.– Assist in developing communication strategies and techniques in order to express
needs at home and at work.
Physical symptoms – Ergonomics interventions.– Environmental accommodations, as well as self-advocacy training skills to promote
the request process.– Accessibility consulting, including assistive technology.– Individualized exercise programs.
Cognitive factors – Highlight and support the use of compensatory strategies.– Possible consideration for assistive technology.
Work place and societal variables – Work site evaluations, including accessibility consultation.– Advocacy to employers for a universally designed workplace and reasonable job
accommodations.– Assist employer to understand ADA and to apply ADA to employees with disabilities.– Assist in developing communication strategies and techniques to express needs and
concerns at the workplace .
Programmatic variables – Education services and workshops that highlight the full scope of rights and programsavailable regarding SSDI, ADA, and vocational rehabilitation.
– Provide basic information to clients with MS in general rehabilitation settings for potentialfuture employment needs.
Additional insight from literature review – Assess and intervene using a holistic approach, considering the personal, environmental,and task related needs and challenges.
– Assist in the development of coping skills.– Be client-centered, focusing on their goals and meanings attributed to work.– Consider the scope of other work alternatives, including possibly home-based.– Provide information about available transportation services in community.
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“title words” identified (i.e., “multiple sclerosis” in combination witheither “employment,” “job,” “career,” “work,” “unemployment,” or “vo-cation”). More literature may be available in the topic areas of multiplesclerosis and employment via other search engines utilizing a combina-tion of other terminology. Related studies that explore employmentwith individuals with other chronic illnesses may shed more light onthis topic as well. Also, this review is limited by studies only publishedin the English language.
CONCLUSION
As outlined in Rumrill (1996a), the employment challenges experiencedby individuals with MS include demographic variables, physical symp-toms, cognitive factors, workplace factors, and programmatic variables.This information is consistent with the findings of this review. The currentliterature adds information about programmatic barriers, needs and chal-lenges specific to women in the workforce, the meaning of and coping withchanging employment status and needs, and considers the scope of neededinformation provision while providing employment services to individualswith MS. Based on this review, in conjunction with Rumrill’s (1996a) text,the priorities for employment-based intervention include developing com-munication strategies and techniques in order to express needs at home andthe workplace, ergonomics interventions, environmental accommodations,accessibility consulting, compensatory strategies for cognitive changes,and educational services regarding Social Security Disability Insurance(SSDI), the ADA, and vocational rehabilitation. This review has built uponRumrill’s work and has elaborated on current information, with a focusspecifically for occupational therapists. More literature supporting directoccupational therapy employment intervention and outcomes wouldstrengthen our role with individuals with MS.
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