Families Dealing with Stroke Desire Information about Self-care Needs %cat+

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Linda L. Pierce, PhD RN CNS CRRN FAHA Michael Gordon Finn, MSN RN Victoria Steiner, PhD

Key words caregivers, families, stroke, information, self-care needs

As hospital lengths of stay have decreased, healthcare pro- fessionals have less opportunity to fully educate stroke pa- tients and their families regarding self-care before the pa- tient is discharged home. Consequently, families often need continuing education provided to them in outpatient set- tings. The purpose of this study was to identify the self-care needs about which people dealing with stroke most fre- quently want information. Twenty-four people responded to a survey that listed 48 self-care needs structured within Orem’s universal self-care requisites (USCRs). The top five self-care needs about which information was desired were: preventing falls; maintaining adequate nutrition; staying active; managing stress; and dealing with emotional and mood changes. These needs correlated with several of

Orem’s USCRs. By keeping these needs in mind, healthcare professionals can develop better educational materials and provide more pertinent information to stroke patients and their families during homecare or office visits, support group meetings, or via the Internet.

Linda L. Pierce is a professor at the Medical College of Ohio (MCO) School of Nursing. Michael Gordon Finn is the nursing director, rehabilitation services at MCO Mercy Rehabilitation Hospital. Victoria Steiner is an assistant pro- fessor at the MCO Department of Medicine. Address corre- spondence to Linda Pierce at 3015 Arlington Avenue, Tole- do, OH 43614 or e-mail lpierce@mco.edu.

Stroke is one of the most common medical emergencies. Every year, approximately 750,000 Americans have a stroke (American Stroke Association, 2002; National Stroke Association, 2003); 590,000 survive and 5%-14% of these survivors will have a second stroke within a year. The majority of survivors are over the age of 55 (National Stroke Association). Many stroke survivors have se- vere physical and emotional effects (O’Connell et al., 2001). Four out of five families will have at least one member who will experi- ence a stroke (National Stroke Association); and nearly 68% of stroke survivors will require care in the home by family members (Dorsey & Vaca, 1998). According to Eaves (2002), caregivers are dissatisfied with the help they receive from healthcare providers and family members concerning caring for a person with stroke; most of those caregivers recognize that they need more help.

It is a responsibility of healthcare professionals to educate stroke survivors and their caregivers to help them care for them- selves and prevent future strokes. However, staffing shortages and decreased lengths of hospital stays allow healthcare staff less time to interact with patients and their caregivers (Rausch & Turkos- ki, 1999). TheEfore, it is essential to identify self-care needs of fam- ilies and develop education resources that can be disseminated in outpatient settings, such as during homecare visits, office ap- pointments, support group meetings, and via the Internet are es- sential. This article reports the results of a mail survey of stroke survivors and their caregivers that asked them to identify areas of self-care about which they felt they needed more information.

literature review Caregivers and stroke: Bakas and Burgener (2002) stud-

ied a convenience sample of 104 caregivers of stroke survivors and found that low self-esteem, high task difficulty, and high

threat appraisal were good predictors of emotional distress. They also stated that the inability to predict outcomes suggests the need for interventions to reduce the difficulty of caregiving tasks and to lessen the caregivers’ emotional distress. Dealing with stroke may be difficult because it imposes limitations, such as speech difficulties, loss of mobility, poor memory, and loss of dexterity (Cox, Dooley, Liston, & Miller, 1998). Anderson et al. (2000) found that families experienced poor mental health when stroke survivors were discharged home early in their re- covery, as they often are today.

Zwygart-Stauffacher, Lindquist, and Savik (2000) conduct- ed a survey of general healthcare information needs of stroke patients and their caregivers to provide data for nursing admin- istrators who plan nursing services during acute hospitalization and periods of rehabilitation. Stroke patients rated the follow- ing five items as their most important needs: clear information about medications, tests, and treatments; specific instructions regarding exercising for physical recovery; timely therapy and medical attention; answers and explanations given in under- standable terms; and time to ask questions of and share their concerns with health professionals. Caregivers’ top five needs were: facts about the survivor’s condition; information on all options for treatment and therapy; information regarding the chances of recurrent stroke and how to reduce them; advice on when to call healthcare professionals regarding symptoms or an emergency; and timely therapy, service, and medical attention for their stroke-afflicted family member.

Similarly, Eaves (2000) and Bakas, Austin, Okonkwo, Lewis, and Chadwick (2002) concluded that information about symp- toms, early treatment, and stroke prevention was essential, and Burman (2001) stated that caregivers did not know what to

14 Rehabilitation Nursing Volume 29, Number 1 JanuaryFebruary 2004

expect about the recovery process and its possible course. Pa- tients and caregivers had many unanswered questions, even two years after the initial stroke, especially about concentration and memory problems as well as depression and frustration (Hang- er, Walker, Paterson, McBride, & Sainsbury, 1998). In this proj- ect, we surveyed families with stroke survivors in home settings and how they addressed specific self-care needs.

Theoretical framework We identified Orem’s (200 1) self-care deficit nursing theory

as the theoretical framework for this project. According to Orem (2001), self-care agency is a complex and developed human ca- pability to knowingly perform actions to meet one’s own needs, as well as the needs of others. Orem described dependent-care agency as the capabilities of persons to know or meet the needs of another person (i.e., survivor of stroke).

Orem (2001) defined self-care requisites as the universal and minimal requirements inherent to maintain health, functioning, and development. Orem’s theory contains the following univer- sal self-care requisites (USCRs): maintaining adequate intake of air, water, and food; providing care related to elimination and ex- crements; maintaining a balance between activity and rest and between solitude and social interaction; preventing hazards to life, functioning, and well-being; and promoting normalcy of hu- man functioning and social development.

An individual’s ability to meet self-care requisites and main- tain self-care agency often are altered by a stroke, as is their care- givers’ ability to maintain their own dependent-care agency. Identifying those self-care deficits and providing information about them can help stroke survivors maintain their self-care agency as well as the dependent-care agency of the caregiver.

Methods Sample: In 2001, using a nonexperimental design approved

by our Institutional Review Board, we mailed a survey to 166 families recruited from two rehabilitation hospitals in northern Ohio. The return rate for the survey was 14%, and the sample size for data analyses was 24. Participants were asked not to identify themselves. This anonymity encouraged participants to give frank answers to potentially uncomfortable questions, such as those dealing with sexuality or coping mechanisms.

Survey: Rupp (2002) developed a survey that was adapted for this project. That survey lists 49 self-care needs, such as cop- ing with life, dealing with changes in sexuality, and learning about exercise. The needs were categorized using Orem’s USCR. A nurse statistician reviewed Rupp’s survey during its develop- ment and suggested reducing the two-page survey to one page to ensure its completion. The nurse also suggested that the sur- vey might promote bias as to the USCR categories, since the re- spondents might feel that one category was more important than another. To prevent such bias, the USCR category labels were removed. Information related to the survey’s content validity was obtained by having three nurses experienced in working with stroke survivors review it. These experts suggested minor editorial changes. Rupp then distributed the survey to registered nurses to gather data about the information about self-care fam- ilies of stroke survivors said they wanted.

For this project, some of the 49 items on Rupp’s survey were reworded and combined to make the language less technical and easier to understand; this procedure shortened the survey to 48 items and caused an adjustment of the Flesch-Kincaid 6.7 grade reading level score to 5.5 (Microsoft Word@, 2000). For exam- ple, the topic “managing anticoagulation therapy” was changed to “dealing with blood thinning drugs.” The subjects were asked to mark a box next to the 12 self-care needs about which they most frequently wanted information. They were encouraged to note any other needs that were not listed in the survey on the back of the form. Informed consent was implied if a subject com- pleted and returned the survey.

Findings Descriptive statistics of frequencies, percentages, means, and

ranges were used to analyze the data collected. The sample size was 24. Two subjects did not completely answer the demographic information.

Thirteen of the respondents (54%) were women. Fourteen respondents were spouses of the stroke survivor (58%), while the remaining respondents were sons, daughters, grandchildren (16%), or the stroke survivor themselves acting as their own caregivers (33%). The mean age of the respondents was 56 years, with a range of 47 to 82 years. Most of the respondents were Eu- ropean Americans (88%). Their education levels ranged from 11.5 years to 20 years of schooling. Half of the respondents were employed.

The top 12 self-care needs are listed in Table 1 (page 12). Of these, the five most frequently chosen were: preventing falls (71 %), maintaining adequate nutrition (63%), staying active (63%), managing stress (58%), and dealing with emotional and mood changes (50%). Upon choosing 12 self-care needs from the 48 listed in the survey, at least 50% of the families’ responses fell into only five needs (see Table 1). In addition, the respondents did not identify any further needs.

Discussion Although the sample was representative of families in north-

ern Ohio, a limitation of this project is the low response rate (14%). The usual response rate for a mailed survey is 20% (Bourque & Fielder, 1995). The survey was mailed during the Christmas holidays, which could explain the low response rate. That rate might be improved by sending the survey at a different time of the year. In addition, using a method other than a mail- ing, such as a telephone interview, might increase the number of respondents. This study also could be improved by dividing the sample into caregivers and people with stroke and analyzing the groups separately. This was not possible in this study because of the small number of subjects. Therefore, these results are gener- alizable only to families dealing with stroke and do not address potential differences between caregivers and stroke survivors.

Prevention of falls, listed as hazards in Orem’s (2001) USCRs was the most frequently identified self-care need by our re- spondents. Orem described the prevention of hazards in relation to human life, well-being, and functioning. Hazards can be elim- inated through actions taken to identify, remove, protect from, and control them. Preventing falls is important in maintaining

Rehabilitation Nursing Volume 29, Number 1 January/February 2004 15

Stroke Self-care Information Needs

Self-care Need / Universal Self-care Requisite Families (n = 24)

1. Preventing falldhazards 2. Maintaining adequate nutritiordfood 3. Staying active/normalcy 4. Managing stresshormalcy and

solitude and social interaction 5. Dealing with emotional and mood

changes/normalcy and solitude and social interaction

6. Managing roles and relationships/ solitude and social interaction

7. Learning activities to increase dexterity, memory and functiordnormalcy

8. Preventing constipatiordelimination 9. Understanding the stroke disease

processhorrnalcy

problems/solitude and social interaction

changednormalcy

rest and normalcy

10. Dealing with communication

1 1. Dealing with behavior and personality

12. Learning about exercise/activity and

Freq.

17 15 15 14

12

11

11

10 10

9

9

7

%

71 63 63 58

50

46

46

42 42

38

38

29

Self-care Need / Universal Freq. Self-care Requisite (Pierce, Rupp, Hicks, & Steiner, 2003)

Registered Nurses (n = 28)

1. Understanding stroke disease process/ 23 normalcy

2. Preventing pressure ulcerdhazards 17 3. Demonstrating safe transfer techniques/ 16

4. Preventing aspiratiodair 15 5. Dealing with problems in communication/ 15

15

7. Managing anticoagulation therapyhizards 14 8. Comprehending availability and use of 14

assistive or adaptive devices/normalcy

strategieshazards

hazards

solitude and social interaction

hazards 6. Understanding the prevention of falls/

9. Developing household safety 12

10. Preventing constipation/elimination 11 1 1. Managing changes in roles and

12. Dealing with emotional changes/

10

10 relationships/solitude and social interaction

normalcy and solitude and social interaction

%

82

61 57

54 54

54

50 50

43

39 36

36

function, development, and the well-being of the stroke survivor and his or her family caregiver and may promote normalcy as well. Promoting normalcy, like preventing hazards, focuses on control of internal threats with the intent to develop positive per- sonal attributes (Orem, 2001).

Needs two through five fall within Orem’s (2001) USCRs of normalcy and solitude and social interaction, while maintaining adequate nutrition corresponds with the USCR of having enough food. Promoting normalcy may diminish the self-care deficits of persons with stroke, promote their self-care agency, and decrease the burden associated with caregiving on the dependent-care agent-the family (Orem). The need to reduce stress on the fam- ily as caregivers is supported in the literature (Bakas & Burgen- er, 2002; Hanger et al., 1998) and can be promoted by providing interventions that reduce the difficulty of caregiving tasks.

Orem (2001) described the balance between solitude and so- cial interaction in relation to the conditions that are essential to the development of processes through which knowledge is ac- quired, values and expectations are formed, and a measure of security and fulfillment is attained. Solitude reduces the demands of social stimuli and interaction while providing conditions that are conducive to reflection, exchange of ideas, communication, adaptation to cultures, and socialization. Maintaining a balance between solitude and social interaction is essential for overall well-being, growth, and development (Orem). There is a need for people with stroke and their families to communicate open- ly, reflect on their roles after a stroke, and assume overall re- sponsibility for caregiving and roles (Cox et al., 1998).

Access to sufficient air, water, and food provides people with the materials they need for metabolism, energy, and constancy of body fluids (Orem, 2001). Education on adequate nutrition is essential to provide and maintain life for the family and the stroke survivor (Zwygart-Stauffacher, et al., 2000).

The self-care needs identified by the respondents are not top- ics that are usually taught in traditional healthcare settings. Pierce, Rupp, Hicks, and Steiner (2003) supported this idea in their ear- lier project when rehabilitation and home healthcare registered nurses were asked to identify self-care needs about which families of stroke survivors wanted information (see right half of Table 1).

The rehabilitation nurses were concerned with immediate self-care needs, such as aspiration, bowel and urinary inconti- nence, and maintenance of equipment such as feeding tubes. These topics usually are taught in traditional hospital settings. The home healthcare nurses identified self-care needs that are not traditionally taught in hospitals and that were similar to the needs identified by the families in this study. The needs identi- fied by the home healthcare nurses included an understanding of how to prevent falls and how to deal with emotional and be- havioral changes (Pierce et al., 2003), the same needs identified by the families in this project (see left half of Table 1).

Going one step further in comparing data from all registered nurses in the Pierce et al. study with data from this current project with families, the families were more Concerned with long-term, self- care needs, such as preventing falls, maintaining adequate nutn- tion, staying active, managing stress, and dealing with emotional and mood changes. The nurses were focused on acute self-care

16 Rehabilitation Nursing Volume 29, Number 1 JanuaryEebruary 2004

needs related to understanding the disease process, preventing pres- sure ulcers, demonstrating safe transfer techniques, preventing as- piration, and dealing with communication problems. Families need new and ongoing education about dealing with the realities of stroke as they begin and continue the care process. This circumstance supports the idea that families need education that could be pro- vided by traditional or nontraditional methods.

Implications One future research option is to study the efficacy and cost

of nontraditional Web-based education and support, compared with traditional education methods, and its availability to the general public. A second option might be to survey a larger group of caregivers or persons with stroke or both, to identify addi- tional information needs. A third option is to replicate this study with allied health professionals, such as physical therapists, oc- cupational therapists, speech therapists, nutrition specialists, and social workers to address needs not always addressed by nurs- es. The involvement of other disciplines could provide a more interdisciplinary approach to developing education resources for caregivers and stroke survivors.

Advances in healthcare technology have enabled growing numbers of stroke patients to survive and eventually return home, where care usually becomes the responsibility of family mem- bers. Healthcare providers must be ready to help these popula- tions obtain the education they need, as well as those of their families. The ability of professionals to provide information in traditional out-of-hospital settings, as well as in nontraditional ways, is essential. The current emphasis in the healthcare mar- ket on cost reduction encourages the development of cost-ef- fective methods of providing education to stroke survivors and their families. Such education may help reduce readmissions, reduce future strokes, and prevent family complications, such as anger and inappropriate coping methods. The overall effect may be increased family stability and decreased healthcare costs.

Conclusion Knowing the self-care needs of families of stroke patients is

of the utmost importance. This study provides an insight into those needs. The top five self-care needs that families and stroke survivors wanted information about were: preventing falls, main- taining adequate nutrition, staying active, managing stress, and dealing with emotional and mood changes. Being aware of these needs may help professionals develop focused educational ma- terials with which to provide pertinent information, as well as counseling, to families and stroke survivors in outpatient and home settings.

References American Stroke Association. (2002). Heart Disease arid Stroke Statistics - 2003 Update. Retrieved January 17, 2003, from http://www. americanheart.org/presenter.jhtml?identifier=3007338

Anderson, C., Rubenach, S., Mhurchu, C., Clark, M., Spencer, C., & Wind- sor, A. (2000). Home or hospital for stroke rehabilitation? Results of a randomized controlled trial. Stroke, 31, 1024-103 I .

Bakas, T., Austin, J., Okonkwo, K., Lewis, R., & Chadwick, L. (2002). Needs, concerns, strategies, and advice of stroke caregivers the first 6 months after discharge. Joitnial of Neirroscience Nirrsirig, 34, 242-25 1.

Bakas, T., & Burgener, S. (2002). Predictors of emotional distress, general health, and caregiving outcomes in family caregivers of stroke sur- vivors. Topics in Stroke Rehabilitation, 9( l), 3445.

Bourque, L., & Fielder, E. (1995). How to coridirct selfadrniriisterrd arid mail siirveys. Thousand Oaks, CA: Sage.

Burman, M. (2001). Family caregiver expectations and management of the stroke trajectory. Rehabilitatiori Nursing, 26(3), 94-99.

Cox, E., Dooley, A., Liston, M., & Miller, M. (1998). Coping with stroke: Perceptions of elderly who have experienced stroke and rehabilitation interventions. Topics irt Stroke Rehabilitatiori, 4(4), 76-88.

Dorsey, M., & Vaca, K. (1998). The stroke patient and assessment of care- giver needs. Journal of Vascular Nursing, 16, 62-67.

Eaves, Y. (2002). Rural African American caregivers’ and stroke sur- vivors’ satisfaction with health care. Topics in Geriatric Reliabilitatiori, 17(3), 72-84.

Eaves, Y. (2000). What happened to me: Rural African American elders’ experience. Jortnicil of Vascular Nursing, 6(3), 62-67.

Hanger, H., Walker, G., Paterson, L., McBride S., & Sainsbury, R. (1998). What do patients and their carers want to know about stroke? A two- year follow-up study. Clinical Reliabilitariori. 12( I), 45-52.

Microsoft Word. (2000). The Flesch-Kiricaid grade level score. (Version Office 97) [Computer software]. Redmond, WA: Author.

National Stroke Association. (2003). Stroke Facts. Retrieved January 17, 2003, from http://www.stroke.org/pages/press~disease.cfm#OO9

O’Connell, B., Hanna, B., Penney, W., Pearce, J., Owen, M., & Warelow, P. (2001). Recovery after stroke: A qualitative perspective. Joirrrial of Quality iri Clinical Practice, 21(4), 120-125.

Orem, D. (2001). Nursing: Concepts ofprcrctice (6th ed.). St. Louis: Mosby Yearbook.

Pierce, L., Rupp, G., Hicks, B., & Steiner, V. (2003). Meeting the educa- tional needs for caregivers and survivors of stroke. Geroritology & Geriatrics Edrrcatiori ,23(4), 75-90.

Rausch, M., & Turkoski, B. (1999). Developing realistic treatment stan- dards in today’s economic climate: Stroke survivor education. Joirrrial of Advanced Niirsing, 30, 329-335.

Rupp, G. (2002). Iuforr~iatiorial needs arid developrrierit of Web-based edii- catiorial tips f o r caregivers of itidividiials with stroke. Unpublished master’s thesis, Medical College of Ohio, Toledo.

Zwygart-Stauffacher, M., Lindquist, R., & Savik, K. (2000). Development of health care delivery systems that are sensitive to the needs of stroke sur- vivors and their caregivers. Nursing Administration Quarterly, 24(3), 33-42.

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Rehabilitation Nursing Volume 29, Number 1 JanuaryFebruary 2004 17