Stroke Rehabilitation: Assessing StrokeSurvivors' Long-Term Learning Needs

Judi Johnson, PhD RN FAANValinda Pearson, MS RN CRRNLindsey McDivitt, BA

What are the long-term learningneeds of stroke survivors who mustadapt to living with stroke-relateddisabilities?A broad-basededucationalneeds assessment was conducted tofindanswers to this question and to gain in­sight into the concerns and challengesfacing stroke survivors who have re­turned to living in the community.Stroke survivors,family members, andrehabilitation healthcare professionalswere surveyed; positive responsesstrongly indicated that there was inter­est in learning more about the selectedtopics. Although there was congruenceacross all groups, healthcare profes­sionals indicated that they felt morestronglythan eitherpatients orpatients'family members that stroke survivorsneed to learn more about thefacts andstatistics ofstrokes. Stroke survivorsand family members indicated astronger interest in learningabout com­plementary therapies such as massage,acupuncture, and the role offood andvitamins. Time since stroke was an in­fluencing factor for both stroke sur­vivors andfamily members in their re­sponses to how strongly they wanted tolearn about various topics. The find­ingsfrom this needs assessmentformedthe basisfor an educational course thatuses a holistic approach to address thephysical, emotional, social, economic,and spiritual aspects ofadapting to liv­ing with stroke-related disabilities.

Address correspondence to JudiJohnson, PhD RN FAAN,HealthQuest, 5005 Mulcare Drive,Minneapolis, MN 55421.

Stroke survivors, upon their discharge from an acute rehabilitation facility, may wellbenefit from interventions that reinforce the concept that rehabilitation is a lifelongprocess. Interventions to empower stroke survivors to adopt a self-directed program ofwellness could add an important dimension to stroke survivors' quality of life, althoughit is not yet clear either what the interventions should be or what format they should take.Furthermore, there is no clear documentation as to what stroke survivors actually needor want to learn as they face the challenges of redefining life for themselves. Thus, wedecided to inquire into the learning needs of stroke survivors as an initial step on thepath to formulating interventions; this required a review of the literature to first deter­mine what types of services and programs already exist. We also reviewed the views ofhealth professionals who practice in the field of rehabilitation as well as those of strokesurvivors and their family members.

To date, the clinical and research focus on stroke care has been primarily aimed atmanaging the acute stage of stroke recovery and evaluating the effectiveness of rela­tively short-term rehabilitation programs. By comparison, reports on programs, services,or research that address the issues involved in long-term survival are relatively few (Ad­kins, 1993: Lindmark & Hamin, 1995; Werner & Kessler, 1996).

What we do know of the more than 2 million stroke survivors in the United States isthat most of them have some form of permanent disability. These disabilities have beenestimated to cost more than $6 billion annually (Agency for Health Care Policy and Re­search, 1995). Given our aging population and medical advances in treating stroke andits related causes, these numbers are certain to increase. The literature reports that eventhough 69% of stroke survivors perform self-care activities independently and 80% areindependently mobile, 70% have had significant life-changing losses related to their vo­cational and social functioning. It is also known that stroke survivors are five times morelikely to have a second stroke 6 to 12 months after being discharged from the hospital andthat they may lose ground in maintaining the self-care skills they learned following theirstroke. When Ahlsio, Britton, Murry, and Theorell (1984) studied how quality of lifewas affected by a stroke, they found that stroke survivors' quality of life failed to im­prove with time, even if their level of independence in activities of daily living improveddrastically. Other studies reported that 61%-100% of stroke survivors' who were evalu­ated for as long as 4 years had a decrease in their quality of life (Becker, 1993; Niemi,Laakasonen, Kotila, & Waltimo, 1988). These findings were corroborated by a study done5 years after stroke survivors completed clinical rehabilitation and after the majority of themreported having encountered problems with occupational and leisure activities and ma­jor changes in relationships with friends and acquaintances (Dekker, Arendzem, & Eis­rna, 1995). Others have reported that stroke survivors do not necessarily return to a nor­mal social life, even when their physical disability ceases to be a serious obstacle (Labi,Phillips, & Gresham, 1980). An important implication that can be drawn from these stud­ies is that more research that addresses stroke survivors' quality of life over an extendedtime needs to be done.

Rehabilitation Nursing> Volume 22. Number 5· Sept/Oct 1997 243

Stroke Rehabilitation

Very little has been reported in the literature as to the valueof educational or support interventions at any point on the carecontinuum (Easton, Zemen, & Kwiatkowski, 1994; Kemich &Robb, 1988; Winterhalter, 1992). Traditional ongoing supportgroups and clubs, although on the increase, fall short of pro­viding for stroke survivors' specific educational needs in a struc­tured or sequential manner. The Stroke Outreach program ofthe American Heart Association (1994) uses planned educationin its approach to training peer support visitors, as does TheRoad Ahead, a program of the Florida Chapter of the NationalStroke Association (1993). Other educational programs reportedin the literature are offered during the acute phase of stroke sur­vivors' rehabilitation, but they are most often intended for care­givers (Evans et al., 1992).

There have also been studies (White & Holloway, 1990) ofpatients' and their families' needs at the time of discharge fromthe hospital setting. Little is known about whether these needsare being met or how they might change over time. When re­habilitation is viewed as a lifelong process, it is important thathealth professionals address the related issues of ongoing re­habilitation.

Needs assessmentTo gain insight into the concerns and challenges facing stroke

survivors who have returned to the community, it is essential toinvestigate their learning needs, which can be defined as basicwants or desires. A formal needs assessment, which providesjustification for creating the program as well as determiningcourse content should be conducted before initiating any edu­cational program. A common error made by program plannersis assuming that they know what their clients need to learn. Pro­grams that are planned based on learners' needs are more like­ly to be successful, however.

The actual process for carrying out a needs assessment cantake several forms: an objective questionnaire given to peoplevia direct contact or mail, open-ended interviews, focus groupdiscussions, and/or observations. Both the views of the specif­ic patient population, which in this case is stroke survivors, andthe health professionals working with them should be assessed.Examining the findings for similarities and differences can pro­vide direction for developing an educational program.

MethodologyQuestionnaire design: We used a questionnaire to gather the

needs assessment data because it provided a way to reach a largesample of the target audience and could easily be distributed ei­ther by mail or in person. The I Can Cope (American CancerSociety, 1994) patient education course was selected as the mod­el for using a structured educational program approach to facil­itate adaptation to living with a chronic illness (Johnson, 1980).Because of the chronic nature ofboth cancer and stroke, we usedthe I Can Cope topic outline when designing the questionnaire.The format was adapted from one used to assess the learningneeds of Swedish cancer patients (Grahn & Johnson, 1990).

Consultations with a speech therapist and a psychologist,along with discussions held with members of three ongoing

244 Rehabilitation Nursing> Volume 22, Number 5· Sept/Oct 1997

stroke support groups, provided additional input into the de­velopment of the questionnaire. We also conducted apilot studywith a group of5 stroke survivors to establish face validity andassess the readability of the questionnaire.

Questionnaire content: The questionnaire was composed of18 suggestions or unanswered questions that represented a rangeof topics related to living with stroke. The content of the I CanCope course served as a guide for determining the topics. Ad­ditional space was provided so respondents could add sugges­tions for other topics. The examples given in Figure 1 show theformat and range of topics included in the questionnaire. Health­care professionals were asked to complete the questionnaire byassessing how important each topic was for helping stroke sur­vivors adjust to living with their disabilities. The same ques­tions were asked of both the laypersons (stroke survivors andfamily members) and the healthcare professionals. Respondentswere asked to choose from one of four responses. Figure 2 givesthe response choices that could be used in completing the ques­tionnaire.

Study sample: A total of 258 questionnaires were com­pleted; 68 of the respondents were stroke survivors and 37 werefamily members, for a total of 105 laypersons. The remaining153 respondents were healthcare professionals in rehabilitation.The majority of the respondents lived in the Minneapolis/St.Paul metropolitan area. The respondents had been contacted

Figure 1. Examples of Survey Questions

Question 1. What causes a stroke?Question 3. Why does a stroke affect people differently?Question 9. How do stroke survivors cope with the losses

caused by a stroke?Question 15. What types of exercise programs are available

for stroke survivors?

Figure 2. Response Choices for the NeedsAssessment Tool

Response choices for stroke survivors and familymembers

1. I know enough about this topic.2. I want to learn a little about this topic.3. I want to learn a lot about this topic.4. I am not interested in this topic.

Responses choices for health professionals

1. Stroke survivors already know enough.2. Stroke survivors ought to learn a little about this topic.3. Stroke survivors ought to learn a lot about this topic.4. Stroke survivors have no need to learn about this topic.

through four different support groups, a peer visitation trainingprogram, and three outpatient rehabilitation treatment centers.All respondents were told the reason for the survey and given achoice to either complete the survey on-site or return it by mail.The majority chose to complete the survey on-site.

Sixty-three percent of the lay respondents were female and37% were male. Table 1 shows the demographic data for thestroke survivors who completed the survey. The majority wereolder than 40 years of age and had experienced their stroke atleast a year before the survey. The majority of family membersalso were older than 40 years of age and more than a year hadpassed since their family member's stroke event (see Table 2).This convenience sample reflects the population of stroke sur­vivors for whom the proposed education course was to be de­signed. Thus, the findings of the needs assessment provided anappropriate database from which the course could be developed.

A wide variety of health professionals completed the survey

(see Figure 3). The majority of the 153 respondents were fromone of three Minneapolis rehabilitation facilities. Physical andoccupational therapists were the largest groups of healthcareprofessionals who responded to the survey.

Findings of the needs assessmentResponses 2 and 3 (see Figure 2) indicated that the topic is

or ought to be of interest to stroke survivors, with the variationbeing in whether stroke survivorsneed to "leam a little" or "leama lot." When we combined the figures for these two responses,we found that the majority of all the respondents agreed that allof the selected topics are of some degree of interest to strokesurvivors. The stroke survivors and their family members heldsimilar views as to how much stroke survivors need to learnabout the various topics. However, there were some differencesin the responses given by the group of laypersons and the re­sponses given by the healthcare professionals.

Table 1. Current Age of Stroke Survivors and Time Since the Stroke Event

TotalTime Since Younger than 40-60Years Old Older than Number ofStroke Event 40 Years Old 60 Years Old Stroke

Female Male Female Male Female Male Survivors

Less than 0 3 0 5 4 136 months6 months- 0 2 2 0 61 year

1-1.5 years 2 0 4 1 1 0 8

1.5-2 years 1 0 1 2 0 2 6

More than 2 years 3 1 4 8 11 8 35

Total 7 2 14 13 17 15 68*

*38 females and 30 males

Table 2. Current Age of Family Members of Stroke Survivors and Time Since the Stroke Event

Time Since Younger than 40-60Years Old Older thanTotal

Number ofStroke Event 40 Years Old 60 Years Old Family

Female Male Female Male Female Male Members

Less than 0 0 0 2 46 months6 months- 0 0 5 2 0 81 year

1-1.5 years 0 0 1 1 1 0 3

1.5-2 years 0 0 2 1 0 1 4

More than 2 years 0 1 6 0 8 3 18

Total 0 15 3 13 5 37*

*28 females and 9 males

Rehabilitation Nursing. Volume 22, Number 5· Sept/Oct 1997 245

Stroke Rehabilitation

For Question 1 (What causes a stroke?), 23% of the lay groupsaid they already knew enough, compared with only 12% of the

Figure 3. Rehabilitation Healthcare ProfessionalsWho Responded to the Survey (n =153)

Type of Health Professional Number of Respondents

Psychologists 5Social workers 14Speech/language pathologists 15Nurses 17Therapeutic recreational specialists 8Physical therapists 34Occupational therapists 29Physicians 13Administrators and others 18

health professionals. For Question 2 (What happens when a per­son has a stroke?), 16% of the lay group gave this same response,whereas just 6% of the health professionals felt this to be true.For Question 3 (Why does a stroke affect people differently?),16% of the lay group again said they already knew enough,whereas only 3% of the healthcare professionals gave this re­sponse (see Table 3). These differences should be consideredwhen designing an educational program for stroke survivors.That is, given the responses of both the stroke survivors andfamily members, it would seem appropriate to give less em­phasis to the facts and figures pertaining to stroke.

The differences in responses to questions that focused on re­lationships, emotional responses, self-esteem, intimacy, and ef­fects on the family indicated that a greater percentage of pro­fessionals thought that stroke survivors need to "learn a lot"about these topics, whereas the stroke survivors and their fam­ily members indicated they would only like to "learn a little"about these topics. The personal nature ofthese topics may ex­plain the rationale for the differences between the two sets ofresponses.

Table 3. Responses of Stroke Survivors, Family Members, and Healthcare Professionals to Selected Questions

Questions and Responses

Question 1. What causes a stroke?Already know enoughWant/ought to learn a littleWant/ought to learn a lotNot interested/no need to learn

Survivors and Family Members (n = 105)

23%33%42%

2%

Professionals (n = 153)

12%27%61%

Question 2. What happens when a person has a stroke?Already know enoughWant/ought to learn a littleWant/ought to learn a lotNot interested/no need to learn

Question 3. Why does a stroke affect people differently?Already know enoughWant/ought to learn a littleWant/ought to learn a lotNot interested/no need to learn

Question 6. What role do food and vitamins havein stroke recovery?Already know enoughWant/ought to learn a littleWant/ought to learn a lotNot interested/no need to learn

Question 16. How do treatments like massageand acupuncture help stroke survivors improve?Already know enoughWant/ought to learn a littleWant/ought to learn a lotNot interested/no need to learn

246 Rehabilitation Nursing> Volume 22, Number 5· Sept/Oct 1997

16%32%52%

16%23%61%

3%28%68%

1%

34%62%4%

6%25%59%

3%26%70%

1%

38%56%

6%

1%55%37%7%

We also found interesting differences in responses for Ques­tion 6, which related to the role of food and vitamins in strokerecovery, and Question 16, which covered massage andacupuncture treatments. More healthcare professionals thanlaypersons indicated that stroke survivors need to learn only alittle or had no need to learn about these topics. It could be spec­ulated that some of the professionals consider the topics of diet,massage, and acupuncture to be forms of alternative medicineand not particularly appropriate for an educational course.

The responses of the stroke survivors were also examined todetermine if age, gender, or time since diagnosis influencedtheir responses. To our surprise, we found a notable differenceonly after sorting the responses into the stroke survivors andfamily members whose stroke had occurred less than 6 monthsearlier (n = 13) and those whose stroke had occurred more than2 years earlier (n = 35). There was a more than 8% variation inresponse for questions 4,6,7, and 9 (see Table 4). The contrastbetween the two groups centers on their indication of needingto "learn a little" versus needing to "learn a lot" about all of thetopics. Also, depending upon the question, at least 1 (and asmany as 3) of the respondents in the group whose stroke eventhad occurred more than 2 years earlier indicated they alreadyknew enough or did not want to learn about the topic. This find-

ing suggests that stroke survivors' needs are likely to changeovertime.

All of the survey respondents were able to make additionalcomments, but most of the comments were written by the health­care professionals. Suggestions included providing informa­tion about Social Security benefits, employment, specifics onsexual issues, the grief process, spirituality, and caregivers' con­cerns. Two family members also suggested that caregivers' con­cerns be addressed.

Discussion of the findingsThe positive responses given on all 258 surveys strongly in­

dicated that the respondents felt that stroke survivors need orwant to learn about all of the identified topics. These findingsprovided us with direction for designing an educational coursefor stroke survivors who have lived with stroke's aftereffectsfor 6 months or more. The course we designed uses a holistic ap­proach by including a range of topics that address the physical,emotional, social, economic, and spiritual aspects of adaptingto living with the disabilities created by a stroke. This struc­tured educational course offers valuable information at a timewhen stroke survivors and their families need and desire to learnmore about the life-altering aspects of living with a stroke. Rec-

Table 4. Responses of Stroke Survivors and Family Members to Selected Questions, Based on TimeSince Stroke Event

Time Since Stroke Event

Questions and Responses < 6 months (n = 13) > 2 years (n = 35)

Question 4. What other problems are experienced by stroke survivors?Already know enough 5% 6%Want/ought to learn a little 5% 29%Want/ought to learn a lot 89% 65%Not interested/no need to learn

Question 6. What role do food and vitamins have in stroke recovery?Already know enoughWant/ought to learn a littleWant/ought to learn a lotNot interested/no need to learn

Question 7. Do stroke survivors have pain and, if so, can it be treated?Already know enoughWant/ought to learn a littleWant/ought to learn a lotNot interested/no need to learn

Question 9. How do stroke survivors cope with the loss caused by a stroke?Already know enoughWant/ought to learn a littleWant/ought to learn a lotNot interested/no need to learn

21%79%

5%23%63%

5%

15%85%

3%33%58%

6%

6%43%47%4%

12%24%64%

Note. Percentages may not equal 100% because some respondents did not answer all the questions.

Rehabilitation Nursing> Volume 22, Number 5· Sept/Oct 1997 247

Stroke Rehabilitation

ognizing that stroke survivors' needs change over time bringsto question how best to address these needs. The frequency ofcontacts that stroke patients have with rehabilitation profes­sionals diminishes with the passage of time. Also, reentry intothe community can become complex for stroke survivors aswell as for their family members. Rehabilitation centers andcommunity organizations may therefore find it mutually bene­ficial to become partners in offering educational resources tostroke survivors and their family members.

Implications for rehabilitation nursing practiceKnowledge is power. Providing stroke survivors with the in­

formation they seek empowers them to find ways and means ofadapting to living with their disabilities. This needs assessmentwas the first step in developing a course to help stroke survivorsdevelop self-care strategies for living with their stroke-relateddisabilities. Healthcare professionals working in rehabilitationsettings are in a position to advocate for this type of community­based educational course and to serve as facilitators for such acourse. For example, rehabilitation professionals could serveas expert presenters for one or more of the selected topics; thiswould provide a high level of credibility and visibility for boththe course and for rehabilitation in general. Rehabilitation nurs­es, in particular, have a key role in encouraging stroke survivorsto continue their rehabilitation efforts beyond the time of theirdischarge from the acute rehabilitation setting. The messageneeds to be conveyed to stroke survivors that their reentry intothe community will present a number of challenges that requiretime, patience, resources, and an insight into how their needswill continue to change over time. As health educators, weshould not only ask about the learning needs of stroke survivorsat various points in their rehabilitation but we should also com­mit our resources to creating programs to meet those needs anddiligently evaluate the outcomes of those educational efforts.

ReferencesAdkins, E. (1993). Quality of life after stroke: Exposing a gap in nursing

literature. Rehabilitation Nursing, 18, 144-147.Agency for Health Care Policy and Research, U.S. Department of Health

and Human Services. (1995). Post-stroke rehabilitation: Clinical practiceguidelines (AHCPR Publication No. 95-0663). Rockville, MD: Author.

Ahlsio, B., Britton, M., Murry, V., & Theorell, T. (1984). Disablement andquality oflife after stroke. Stroke, 15, 886-890.

American Cancer Society. (1994)./ can cope: A series ofeducational class­es (3rd ed.). Atlanta: Author.

.American Heart Association. (1994). Stroke outreach.. Dallas: Author.Becker, G. (1993). Continuity after stroke: Implications oflife disruption

in old age. Gerontology, 24(2),64-70.Dekker, R, Arendzem, J., & Eisma, W. (1995). Functional status and de­

pendency of stroke patients 5 years after clinical rehabilitation. Journal ofRe­habilitation Sciences, 8(4),99-105.

Easton, K., Zemen, D., & Kwiatkowski, S. (1994). Developing and imple­menting a stroke education series for patients and families. Rehabilitation Nurs­ing, 19,348-351.

JudiJohnson isa nurseconsultant withHealthQuest inMinneapolis.Valinda Pearson is a doctoral student at the University ofMin­nesota in Minneapolis. LindseyMcDivitt is a stroke rehabilitationconsultant in Lawrence, KS.

248 Rehabilitation Nursing> Volume 22, Number 5· Sept/Oct 1997

Evans, R, Griffith, J., Haselkorn, J., Hendricks, R, Baldwin, D., & Bish­op, D. (1992). Poststroke family function: An evaluation of the family's rolein rehabilitation. Rehabilitation Nursing, 17, 127-132.

Grahn, G., & Johnson, J. (1990). Learning to cope and live with cancer.Scandinavian Journal ofCaring Science, 4(4),173-181.

Johnson, J. (1980). The effects of a patient education course on personswith a chronic illness. Cancer Nursing, 4(2), 117-123.

Kernich, c., & Robb G. (1988). Development of a stroke family supportand education program. Journal ofNeuroscience Nursing, 20(3), 193-197.

Labi, M.L.C., Phillips, T.F., & Gresham, G.E. (1980). Psychosocial dis­ability in physically restored long-term stroke survivors. Archives ofPhysicalMedicine and Rehabilitation, 61, 561-565.

Lindmark, B., & Hamin, E. (1995). A five-year follow-up of stroke sur­vivors: Motor function and activities of daily living. Clinical Rehabilitation,9(1), 1-9.

National Stroke Association, Florida Chapter. (1993). The road ahead.Pompano Beach, FL: Author.

Niemi, M.L., Laakasonen, R., Kotila, M., & Waltimo, O. (1988). Qualityof life 4 years after stroke. Stroke, 19, 1101-1107.

Werner, R, & Kessler, S. (1996). Effectiveness of an intense outpatient re­habilitation program for postacute stroke patients. American Journal ofPhys­ical Medicine Rehabilitation, 75(2), 114-120.

White, M., & Holloway, M. (1990). Patient concerns after discharge fromrehabilitation. Rehabilitation Nursing, 15, 316-318.

Winterhalter, J. (1992). Group support for families during the acute phaseofrehabilitation. Holistic Nursing Practice, 6(2), 23-31.

AcknowledgmentThis study was sponsored by Courage Center in Golden Val­

ley, MN, and North Memorial Medical Center in Robbinsdale,MN, with a grant from the national office of the American HeartAssociation.

Authors' note"StrokeWise," a patient education course based on the needs

assessment described in this article, has been developed. Thecourse, which consists of eight 2-hour classes, is currently of­fered at various sites in Minnesota for stroke survivors who areat least 6 months along in the recovery process. For more in­formation on the needs assessment questionnaire or the "Stroke­Wise" course, contact Judi Johnson at the address on page 243.

This continuing education offering (codenumber RNC-119) will provide I contacthour to those who read this article and com­plete the application form on page 280 ap­propriately.This independent study offering is appropri-ate for all rehabilitation nurses. By reading

this article, the learner will achieve the following objectives:1. Describe why it is important to conduct a needs assessment.2. Discuss the difference in responses of health professionals,

stroke survivors, and family members.3. Identify what factors influence the responses of family mem­

bers and stroke survivors.