Self-care needs of caregivers dealing with stroke.
Every 45 seconds someone has a stroke in the United States. Each year approximately 700,000 people experience a new or recurrent stroke (American Stroke Association, 2005), and nearly two-thirds of these individuals survive and require rehabilitation (National Institute of Neurological Disorders and Stroke, 2005). Stroke is one of the major causes of severe, long-term disability (National Stroke Association [NSA], 2005a). The estimated number of noninstitutionalized people with stroke steadily increased between the 1970s and early 1990s, from 1.5 million to 2.4 million (NSA, 2005b). This steady increase in the number of noninstitutionalized stroke survivors has greatly affected the caregivers of persons with stroke and their role in the day-to-day care of these individuals.
Shortened hospital and rehabilitation stays mean that healthcare professionals should become adept at assessing a caregiver's information needs and making caregiver education a priority. Doing so can prevent complications and reduce hospital readmissions. Although caring for a loved one who has suffered a stroke can be a satisfying experience, caregiving can also be strenuous and emotionally draining. Exall and Johnston (1999) reported that spouses of people living with stroke believe they could have been told more and given more support during hospitalization and rehabilitation periods. When hospital support ended, caregivers were often overcome with feelings of isolation and abandonment (Exall & Johnston). By identifying caregivers' self-care needs and providing accurate, easily accessible information to meet these needs, healthcare professionals can better prepare caregivers to deal with consequences of stroke. This article identifies self-care needs about which physical and occupational therapists believe caregivers most frequently want information.
A brief review of literature shows the potential differences in perceived caregiver information needs as identified by caregivers and rehabilitation professionals, specifically physical and occupational therapists.
Information Needs Related to Self-Care as Identified by Caregivers
Wiles, Pain, Buckland, and McLellan (1998) conducted 21 interviews and found that people with stroke and their caregivers had a desire for information in three main areas: clinical, or dealing with recovery and prognosis; practical, or coping with day-to-day care; and continuing care and resources in the community. Wiles et al. reported that patients and their caregivers had a desire for relevant, individualized information. Providing individualized information was problematic for these authors because of the unpredictable nature of stroke recovery and fear of criticism from stroke patients and their caregivers if the predicted health outcomes were not realized. Wiles et al. suggested that a database containing a wide variety of information regarding stroke could be used to provide individualized information packages to stroke patients and their caregivers.
In a qualitative study by Grant (1996), stroke survivors and their caregivers (N = 10 couple dyads) identified four main problems following poststroke rehabilitation. These problems included loss of identity of the stroke survivor and feelings of discouragement and depression after discharge. Grant discussed the negative effect that plateau periods can have on the emotional status of the stroke survivor. Stroke survivors expressed frustration about management of their activities of daily living (ADLs; i.e., said it was difficult to bathe, dress, transfer, walk, feed). Caregivers find services to help people with stroke with their ADLs. Stroke survivors and their caregivers also cited as a problem area loneliness and a need for emotional and social support. Grant's findings are relevant in that they provide background about problems related to self-care that stroke survivors and their caregivers have encountered.
Pierce, Finn, and Steiner (2004) determined that families (N = 24) involved in caring for persons with stroke specifically felt the need for more information about preventing falls; maintaining adequate nutrition; maintaining a healthy, active lifestyle; and dealing with emotional and mood changes. Other studies indicated clients and their caregivers were not receiving adequate information about stroke symptoms, medical terminology, and treatments and drugs (Driscoll, 2000; McLennan, Anderson, & Pain, 1996; O'Mahony, Rodgers, Thomson, Dobson, & James, 1997).
Information Needs Related to Self-Care as Identified by Rehabilitation Professionals
Pierce, Rupp, Hicks, and Steiner (2003) surveyed rehabilitation and home care registered nurses (N = 28) and determined that these nurses felt that priority should be given to providing four types of information to the client and caregiver dealing with stroke: understanding the disease process, preventing pressure ulcers, performing safe transfer techniques, and coping with impaired communication. Johnson, Pearson, and McDivitt (1997) determined that professionals in rehabilitation, stroke survivors, and caregivers believe it is essential to investigate stroke survivors' and caregivers' long-term information needs to better understand the concerns and challenges they face upon returning to the community. Johnson et al. noted that a common error made by healthcare educators is to assume that they know their clients' learning needs. Although stroke survivors and their caregivers have a large knowledge deficit early in the recovery period, Johnson et al. reported that stroke survivors have changing educational needs related to self-caring in the rehabilitation period for as long as 2 years poststroke. Similarly Hanger, Walker, Paterson, McBride, and Sainsbury (1998) noted that even if the nature of the questions changes, persons with stroke continue to seek answers to relatively simple questions about their illness 2 years after stroke.
Orem's (2001) self-care deficit nursing theory provided the framework used in this study. Orem's theory was chosen because of its emphasis on promoting and reinforcing the attainment of optimal health. According to Orem, healthcare information increases one's ability to perform self-care and lessens the need for dependent care. Orem stated that self-care agency is the complex, developed human capacity to knowingly perform actions to meet one's own needs as well as others' needs. Dependent-care agency is the capability of a person to meet the needs of another, such as a person with stroke. By providing caregivers of persons with stroke with adequate information specific to their needs, all healthcare professionals involved in the rehabilitation of stroke survivors can empower caregivers to increase their self-care agency and help them provide care to their loved one in a confident, informed manner.
Orem's (2001) theory contains eight universal self-care requisites (USCRs) that individuals must meet independently (self-care), or with the help of others (dependent care), to meet their needs: maintenance of air; maintenance of water; maintenance of food; provision of care related to elimination and excrement; maintenance of balance between activity and rest; maintenance of balance between solitude and social interaction; prevention of hazards to life, functioning, and well being; and promotion of normalcy. If these needs are not met, a self-care deficit exists. A person's ability to meet self-care requisites and maintain self-care agency often is affected by the stroke, as is the caregiver's ability to maintain dependent-care agency. When rehabilitation professionals such as physical and occupational therapists identify self-care deficits and provide information about them, they can help persons with stroke maintain their self-care agency and can help caregivers maintain their dependent-care agency.
Sample and Survey
This study was designed to identify self-care needs about which physical and occupational therapists believe caregivers most frequently want information. In September 2003, using a descriptive research design approved by the institutional review board at a Midwestern medical university, a convenience sample was obtained via two Internet sites. It was limited to therapists who belonged to the American Physical Therapy Association (APTA) and American Occupational Therapy Association (AOTA). Consent to participate in the survey was implied by the return of the completed survey. Ninety-eight surveys were mailed to physical therapists, and 100 surveys were mailed to occupational therapists located at various in- and outpatient facilities throughout the United States. Respondents were asked not to identify themselves. A second mailing was sent to all potential participants, because the survey return rate was less than 50% from the first mailing. These two mailings yielded a total 57% return. Two returned surveys were not used (one was from a speech pathologist and the other contained no demographic data). The final sample size for data analysis was 113 surveys.
A survey data collection method consistent with that of Pierce, Rupp, Hicks, and Steiner (2003) and Pierce, Finn, and Steiner (2004) was used. Pierce et al. asked participants to choose from a list of 49 self-care items, but not place in ranked order, 12 self-care items that they felt represented the self-care needs about which persons with stroke and their caregivers most frequently wanted information. These 49 items were randomly listed and framed under Orem's (2001) eight USCRs. The original survey included a category for each USCR (Pierce et al., 2003). Under each category was a selection of choices of self-care needs about which caregivers need information. For example, the USCR normalcy included understanding the stroke disease process and comprehending the availability and use of assistive or adaptive devices. Before the survey was used, it was given to a biostatistician for content review. This biostatistician suggested removal of the USCR category names from the survey because they were distracting and created a risk of biased responses. For instance, a participant might consider the category maintenance of air more important than the category prevention of hazards and therefore select its underlying information needs. Pierce et al. further tested the survey for content validity by having three master's prepared nurses who were experts in working with individuals with stroke review the survey. These experts suggested minor editorial changes. Some of the 49 items were reworded to make the survey less technical.
For example, managing anticoagulation therapy was changed to dealing with blood-thinning drugs. Additional space was available on the survey for other topics the participants felt were a priority but were not included on the survey (Pierce et al.).
Of the total respondents (N = 113), 64 were occupational therapists (57%) and 48 were physical therapists (42%). The therapists were primarily White, middle-aged women living in the eastern United States. Consistent with practice requirements, more than one-half of the respondents held a master's degree (56%), and slightly more than one-fourth held a bachelor's degree in either occupational or physical therapy (28%). The majority of therapists had been in practice for more than 10 years (77%) and currently worked with people with stroke (73%). Working with people with stroke, however, was not the major part of their practice; most (88%) spent less than 50% of their time with stroke survivors. A complete demographic profile is presented in Table 1. The top 12 self-care needs identified by responding therapists for caregivers of persons with stroke are listed in Table 2. Three of the top five self-care needs about which occupational and physical therapists believed caregivers most frequently wanted information were classified under Orem's (2001) prevention of hazards USCR.
Demonstrating safe transfer techniques (hazards in Orem's  terms) was the information need (82%) most frequently chosen by occupational and physical therapists. According to Orem, the maintenance of human integrity and functioning is accomplished through the prevention of hazards to life; prevention of hazards is linked to all of the other USCRs and focuses on the control the person has over both internal and external environments. Because persons with stroke require some form of care due to physical limitations, caregivers must take action to identify, remove, or protect them from actual or potential hazards that may negatively affect their functional well-being.
Safety and the prevention of hazards are a priority for both the caregivers and the stroke survivor. Safe transfer techniques are critical to prevent injuries and to maintain functional integrity. Consistent with the findings of Pierce et al. (2004), 71% of family caregivers of stroke survivors were most concerned with gathering information about safety measures and the prevention of falls. This need was supported by Grant's (1996) qualitative study finding that the most frequent problem caregivers and persons with stroke faced regarding ADLs in the home care setting involved deficits in mobility and the desire to have assistance with transfers. Similarly, Wiles, Pain, Buckland, and McLellan (1998) determined that people with stroke and their caregivers desired information in three general areas, one of which was coping with day-to-day care such as transfer techniques. Pierce et al. (2003) found that registered nurses in acute home care and acute care rehabilitation practices ranked demonstrating safe transfer techniques as the third most frequently requested information need for caregivers (57%). As a group, the home care and rehabilitation nurses surveyed were most concerned about providing stroke survivors and their caregivers with information about the stroke disease process (82%), possibly because these nurses emphasize health promotion and disease prevention instead of long-term care issues in hospital or home care settings. Therapists have a different focus.
The second most frequent self-care need identified by physical and occupational therapists was comprehending the availability and use of assistive and adaptive devices (78%). Orem (2001) identified this need under the USCR promotion of normalcy. According to Orem, the promotion of normalcy prevents the development of conditions that lead to internal hazards to human life. Therefore, the promotion of normalcy and the prevention of hazards are closely related. Assisting caregivers and persons with stroke in the proper use of assistive devices encourages care recipients to become more independent. It also emotionally and physically affects the functioning of caregivers. Wiles et al. (1998) and O'Mahony, Rodgers, Thomson, Dobson, and James (1997) suggested that people with stroke and their caregivers desire more information on continuing care and available services and resources in the community (e.g., ways to obtain assistive devices).
Self-care needs identified by more than half of the physical and occupational therapists surveyed included the following: (1) understanding prevention of falls (hazards); (2) developing household safety strategies (hazards); (3) dealing with problems in communication (solitude and social interaction); (4) managing visual field losses (normalcy); (5) dealing with emotional changes (solitude and social interaction); (6) managing changes in roles and relationships (solitude and social interaction); and (7) understanding stroke disease process (normalcy) (Table 2). According to Orem (2001), other USCRs that these priority self-care needs fall into include solitude and social interaction and normalcy. Orem believed there should be a balance between solitude and social interaction. This balance helps individuals acquire knowledge, form values, and develop expectations, and it is essential for developmental growth. Solitude provides individuals with quiet, reflective time, and social interaction provides a sense of belonging and is an essential part of the healing process for caregivers and persons with stroke.
Promotion of normalcy focuses on human functioning and development within social groups and the individual's desire to be normal and adapt to changes in life circumstances (Orem, 2001). This USCR fosters all aspects of human development and helps the individual with stroke strive to develop and maintain a positive self-concept and body image. Learning to adapt to changes in lifestyle can be challenging for all involved in dealing with stroke. As the care recipient and caregiver become more adjusted to their environment and changing life circumstances, however, they will gain a greater sense of self and wholeness. This in turn will decrease the care recipient's need for dependent care and promote a positive sense of self for both the person with stroke and the caregiver.
The physical and occupational therapists surveyed did not choose the USCRs air, water, food, or elimination among the top 12 self-care needs. Orem (2001) defined the USCRs air, water, and food as focusing on materials and resources that are essential for the individual to sustain life and bodily processes. These USCRs may not have been a priority for the therapists because of the primary focus on motor functioning and adaptation to the environment. This is in contrast to the studies by Pierce et al. (2003, 2004), in which acute care rehabilitation registered nurses ranked preventing aspiration as the number-one need for caregivers of stroke survivors (77%); families of people with stroke ranked maintaining adequate nutrition second (63%). These differences may relate to the professional role of the acute care rehabilitation nurse and also to the lay caregiver's role. Differences may be attributed to whether an individual is providing care to the stroke survivor in an inpatient acute care hospital setting or in the home care setting.
Identified limitations of this study include gender and racial mix. Respondents were predominately White females. A different mix may have produced a different prioritization of self-care needs. In addition, 27% of the therapists reported that they did not currently work with stroke survivors, but 100% of them said that they currently spent some time working with people with stroke. This result is confusing and may be considered a limitation of the survey wording. Thus, one could also question whether the therapists' report of self-care needs about which caregivers most frequently want information is appropriate because they may not truly know the caregivers' needs.
The sample was obtained via the Internet and was limited to therapists who choose to belong to APTA and AOTA. Professional membership in organizations is a personal value, and using it may have prevented the attainment of a more culturally and racially diverse sample. The southern and western United States were poorly represented in this study. This may have affected the findings, because there may be different values and priorities of care in these regions. All potential respondents were mailed two surveys. The mailings were confidential and there was no way to determine whether previous respondents returned both surveys. Another limitation was that respondents were asked to identify the top 12 self-care needs of caregivers and persons with stroke. This wording may have confused the therapists because a caregiver and a person with stroke may have different self-care needs. Thus, generalizability of these findings is at the discretion of the reader.
Recommendations for further study include surveying caregivers of stroke survivors on methods they use to learn and retain information concerning care of the stroke survivor, as well as identifying the time caregivers and stroke survivors feel they are most ready for education to begin.
Implications for Practice
Physical and occupational therapists' views on the priority of self-care needs of caregivers of persons with stroke may differ from those of family caregivers or registered nurses. But each healthcare team member offers valid input on prioritizing self-care needs that can and should be addressed by providing information. Encouraging input from various healthcare disciplines will strengthen a comprehensive information program for persons with stroke and their caregivers. An interdisciplinary approach to providing information may promote a team atmosphere that allows each member of the healthcare team to be heard, educate one another, and contribute information to better prepare those dealing with stroke. If all involved healthcare team members feel they have input, they will be more likely to use the information program.
Professional nurses can use their leadership skills by coordinating a team approach. By initiating referrals and following up with persons with stroke and their caregivers after discharge, nurses can ensure a smooth transition and offer assistance when needed. Nurses can also evaluate the efficacy of interdisciplinary programs and make appropriate revisions.
Safety issues accounted for three of the top five serf-care needs identified by therapists. The survey also identified the importance of caregivers' understanding the use of and ways to obtain assistive and adaptive devices in the community. By addressing the self-care needs about which physical and occupational therapists believe caregivers most frequently want information, all healthcare team members can provide a more comprehensive information program for persons with stroke and their caregivers.
The occupational and physical therapists who responded to the survey are thanked for their participation in the study.
American Stroke Association. (2005). Heart disease and stroke statistics: 2005 update. Retrieved May 10, 2005, from www.americanheart.org/presenter.jhtml?identifier=3000090.
Driscoll, A. (2000). Managing post-discharge care at home: An analysis of patients' and their carets' perceptions of information received during their stay in hospital. Journal of Advanced Nursing, 31, 1165-1173.
Exall, K., & Johnston, H. (1999). Caring for carers coping with stroke. Nursing Times, 95(11), 50-51.
Grant, J. (1996). Home care problems experienced by stroke survivors and their family caregivers. Home Health Care Nurse, 14, 892-902.
Hanger, H., Walker, G., Paterson, L., McBride, S., & Sainsbury, R. (1998). What do patients and their caters want to know about stroke? A two-year follow-up study. Clinical Rehabilitation, 12, 45-52.
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National Institute of Neurological Disorders and Stroke. (2005). Poststroke rehabilitation fact sheet. Retrieved May 10, 2005, from www.ninds.nih.gov/health_and_medical/pubs/poststrokerehab.htm.
National Stroke Association. (2005a). Impact of stroke. Retrieved May 10, 2005, from www.strokeassociation.org/presenter.jhtml?identifier=1033.
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Table 1. Demographic Profile of Respondents (N = 113) Characteristic Frequency Percentage Type of therapist Occupational therapist 64 57 Physical therapist 48 42 Not specified 1 1 Total 113 100 Location of practice Northern United States 23 20 Southern United States 3 3 Eastern United States 46 41 Western United States - - Midwestern United States 39 34 Not specified 2 2 Total 113 100 Gender Male 24 21 Female 89 79 Total 113 100 Age (years) 20-24 - - 25-29 2 2 30-34 21 19 35-39 27 24 40-44 14 12 45-49 25 22 50-54 14 12 55-59 7 6 60-65 3 3 Total 113 100 Ethnic or racial background American Indian or Alaska 1 1 Native Asian - - Black or African American 2 2 Hispanic or Latino - Native Hawaiian or Pacific 1 1 Islander White 109 96 Total 113 100 Educational level Certificate 2 2 Associate degree 3 3 Bachelor's degree 32 28 Master's degree 64 56 Doctorate 11 10 Not specified - - Total 113 100 Practicing therapy (years) less than 1 2 2 1-5 8 7 5-10 13 11 More than 10 87 77 Missing response 3 3 Total 113 100 Current work with people with stroke Yes 82 73 No 31 27 Total 113 100 Percentage of time currently spent working with people with stroke Less than 25 50* 59 Less than 50 25 29 More than 50 6 7 More than 75 4 5 Total 85 100 * Includes three respondents who do not currently work with people with stroke. Table 2. Self-Care Needs Chosen by Physical and Occupational Therapists (N = 113) Self-Care Need (Universal Self-Care Requisite) Frequency Percentage Demonstrating safe transfer 93 82 techniques (Hazards) Comprehending availability and use 88 78 of assistive and adaptive devices (Normalcy) Understanding prevention of falls (Hazards) 80 71 Developing household safety strategies 80 71 (Hazards) Dealing with problems in communication 74 65 (Solitude and Social Interaction) Managing visual field losses (Hazards) 64 57 Dealing with emotional changes (Normalcy, 62 55 Solitude and Social Interaction) Managing changes in roles and relationships 58 51 (Solitude and Social Interaction) Understanding stroke disease process x 57 50 (Solitude Learning about exercise (Normalcy) 54 48 Managing memory loss (Normalcy, Solitude and 50 44 Social Interaction) Staying active (Normalcy) 47 42
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|Title Annotation:||neuroscience research; includes statistical tables|
|Author:||Cook, Amanda M.; Pierce, Linda L.; Hicks, Barbara; Steiner, Victoria|
|Publication:||Journal of Neuroscience Nursing|
|Date:||Feb 1, 2006|
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