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CLINICAL FEATURE

Perceived Losses Following Stroke

Mumma, Christina M. PhD, RN, CRRN

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doi: 10.1097/rnj.0000000000000262
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Abstract

Introduction

Rehabilitation Nursing Journal (RNJ) is celebrating its 45th year of publication in 2020. To mark this occasion, RNJ is publishing a series of articles from the RNJ archives during the remaining issues of 2020. The second article in this series is by Dr. Christina M. Mumma, “Perceived Losses Following Stroke” (1986). Mumma’s research study was published 34 years ago in Rehabilitation Nursing Journal’s May/June issue when Glee Wahlquist, PhD, RN, served as Editor-in-Chief. At that time, Wahlquist’s editorial emphasized that 1) specialty journals in the past were criticized for emphasis on descriptive/opinion articles rather than research articles and 2) this journal would move to encourage the publication of research studies, as a way to strengthen research-based practice. RNJ has been at the forefront of this initiative in publishing research for an evidence-based practice through the intervening years!

Archived article by Mumma, 1986

A stroke is generally a catastrophic event in the life of the person who has been “struck” and in the lives of that person’s loved ones. Adjustment to the changes related to a stroke may involve coming to terms with various losses. The concept of loss implies a relationship with something or someone whose removal or disappearance leaves a gap in the life of the individual concerned. The intensity of the experience varies, depending partly on the degree of importance or value of the lost object to the individual. Adaptation to change after a loss experience depends on the person’s capacity to assimilate the loss into a new pattern of living. That adaptation is influenced by the actions and reactions of others in response to the person’s changed state of being (Benoliel, 1971).

Losses associated with disability that have been described in the literature include loss of self, loss of physical and mental function, loss of work, loss of relationships, loss of financial security, and loss of a sense of control over life (Adams & Lindemann, 1974; Benoliel, 1971; Stewart & Shields, 1985; Werner-Beland, 1980). There has been little systematic study of losses experienced by individuals with acquired disabilities. Increased knowledge about disability-related losses can be used as a basis for nursing interventions. The purpose of this study was to describe losses experienced following a stroke as perceived by patients and their spouses.

Methods

Design

The study was an exploratory, cross-sectional survey. The adjustment process following a stroke is dynamic and best studied using a prospective, longitudinal approach. Costs in terms of time and money to conduct such a study, however, would be considerable.

Sample

Criteria for selection included the following: 1. Either the husband or wife had had a stroke, diagnosed by a physician, at least 3 months prior to participation in the study. 2. The person who had had the stroke was 50 years of age or older at the time of the stroke. 3. The couple was married and living together at the time of participation in the study. A nonprobability or purposive sampling procedure was used.

Measurement of Variables

Perceived losses related to the stroke were measured by asking the following open-ended questions: What do you miss most that you did before your (your spouse’s) stroke and do not do now? What do you think is the worst thing about your (your spouse) having had a stroke?

Responses given by patients and spouses were recorded verbatim with no restrictions on length.

Demographic and Descriptive Variables

A number of demographic and descriptive variables were measured such as age, sex, length of time in the present marriage, occupation, and income. Patients were asked specific questions about the effects of the stroke. For example, patients were asked whether weakness was on the right or left side of the body. Both patients and spouses were asked to evaluate their own health status and to list any health problems. Spouses responded to items on their roles as caretakers for patients by indicating how much help they provided for patients with activities of daily living, for example: eating, dressing, and bathing.

Data Collection

The data were collected by semi-structured interviews including a combination of structured scales and open-ended questions. Interviews were done in the homes of participants. There were two interviewers during each contact so that the patient and spouse could be interviewed separately and simultaneously.

Procedure for Data Analysis

Responses to open-ended questions about perceived losses were subjected to content analysis. This analysis consisted of categorization and comparison of these categories of perceived loss by sex, length of time since stroke, and right versus left hemisphere brain damage. Descriptive statistics, including frequencies, measures of central tendency, and standard deviations, were used to summarize the characteristics of the sample.

Results

Description of the sample. The data for this study were derived from interviews with 60 middle-aged and older couples in which one person had suffered a stroke at least 3 months prior to participation in the study. Forty-seven (78.3%) of the stroke patients were male and 13 (21.7%) were female. The patients ranged in age from 54 to 81 years, with a mean age of 68.4 years. The age range for spouses was 36 to 78 years, with a mean age of 65 years. The sample was predominantly Caucasian, Protestant, and middle class.

According to both patients and spouses, approximately 55% of the couples had annual incomes of less than $20,000 per year. A wide range of occupations was represented for both patients and spouses. Thirty percent of the women in the sample indentified themselves as housewives. At the time of the stroke, the majority (56.7%) of patients and 46.7% of spouses were retired. One-third of the patients and more than one-third of the spouses were employed full-time at the time of the stroke.

The majority of marriages were long-term, with 85% married to their current spouses for more than 20 years. The mean number of years of marriage was 35 years, with a range of 3 to 55 years. Twenty-two of the patients and 17 of the spouses had had at least one previous marriage. Several of the spouses who had been widowed and then remarried expressed some bitterness at having cared for a previous spouse who had been ill prior to death and then remarried a reasonably healthy man only to have that man have a stroke.

The majority of both patients and spouses reported having one or more health problems. Among these reported problems were heart disease, hypertension, and diabetes. The self-reported health rating was good to excellent for two-thirds of the patients and more than three-fourths of the spouses. Reporting problems related to health did not prevent a self-rating of health as good to excellent. Some participants commented that their health problems were under control. For example, hypertension, for which they were taking medications, did not interfere with their daily activities.

 The self-reported health rating was good to excellent for two-thirds of the patients and more than three-fourths of the spouses. Reporting problems did not prevent a health rating of good to excellent or interfere with their daily activities.

The number of months since stroke ranged from 3 to 72, with a mean number of months of 20.8. Approximately one-half of the patients in the sample had left-body weakness or paralysis as a result of the stroke. Right-body weakness or paralysis was reported by 43.3% of the patients. Impaired sensation on the left side of the body was reported by 28.3% of the patients. Thirty-five percent of the patients had speech impairments in the form of aphasia or difficulty with actual comprehension or expression of language. Fifteen percent of the patients had dysarthria or slurred speech due to weakness of muscles of the mouth and throat. All patients in the study had a reliable and understandable yes-no response. For patients whose language expression was limited to yes or no, many of the items in the interview had to be rephrased. (see Table 1).

Table 1
Table 1:
Physical Impairments of Patients Following Stroke (N=60)

The caretaker-role portion of the interview required spouses to estimate how much help they provided to the patients for daily activities such as eating, bathing, and dressing. There were nine items with a range of total possible scores from 9 to 27. A high score indicated more help. The mean score for caretaker role was 14.15, with a range of 9 to 26 and a standard deviation of 4.77. One item on the caretaker role instrument asked spouses how long they felt comfortable leaving the patient home alone. One-half of the sample reported that they could leave the patient alone for 3 hours or less.

Content Analysis

When responses to the open-ended questions about perceived losses were qualitatively analyzed, three major categories of loss emerged. For the total sample all responses were related to (a) activities, (b) abilities and characteristics, or (c) independence. The number of losses mentioned ranged from none to 10. The top five losses reported by patients (N=60) in order from l-most frequently mentioned to 5-fifth most frequently mentioned were: 1. mobility, 2. independence, 3. patients’ physical abilities, 4. shared activites, and 5. patients’ communication. When responses were compared by sex within the subsamples of patients and spouses the losses reported most often by males and females were similar. The loss mentioned most frequently by both male and female patients was mobility. The top two losses reported by both male and female spouses were identical: (1) traveling and (2) independence.

Comparison of perceived losses by cerebral hemisphere damaged (right or left) revealed that patients with right-brain damage missed their independence and mobility. Patients with left-brain damage missed mobility and driving (another type of mobility). The losses mentioned most frequently by spouses of persons with right-brain damage were independence and social life. Similiar losses were reported by spouses of persons with left-brain damage. Predictably, communication was in the top five losses for both patients with left-brain damage and their spouses. Communication was mentioned rarely as a loss by spouses or patients with right-brain damage. (see Table 2).

Table 2
Table 2:
Rank Order of Perceived Losses by Cerebral Hemisphere Damaged and Spouse

Discussion

Findings of this study were consistent with the literature related to losses associated with disability. Categories of chronic illness and disability loss tend to be similar regardless of the actual medical diagnosis or disease process. Particular losses identified by individuals appear to be function related and primarily reflect the life styles and values of those individuals. Participants in this study identified a wide variety of activities and abilities or characteristics as losses. Independence, as the loss mentioned most often by both patients and spouses, was not surprising. Self-reliance and independence are powerful values in American culture. “I can do it myself,” is a common phrase of toddlers and becomes incorporated as an approach to life for many American adults. The fear of becoming dependent and a burden on loved ones haunts individuals as they grow old in this country. One participant eloquently described a stroke as “the worst thing that can happen to a person. It [the stroke] made me helpless and useless. (Since the stroke) I’m only half a man.”

Another type of independence that some patients and some spouses missed following the stroke was independence as a couple– the ability to do for themselves without asking others for assistance. Several subjects described being able to continue with activities like fishing or traveling after the stroke, but required help from family members or friends for tasks they could do unaided before the stroke.

The differences between the predominant losses perceived by patients compared with those perceived by spouses made sense given the different vantage points. Patients are the ones who must live with the actual limitations in physical functioning. Spouses are one step removed from the disability, and thus tend to focus on the consequences of the disability for themselves and their activities and lifestyles.

The differences by patient versus spouse tended to overshadow sex differences to some extent. There were differences, however, between male and female patients in relation to the types of activities missed following the stroke: hunting, fishing and work for men compared to dancing and cooking for women.

Comparison of perceived losses by length of time since the stroke revealed considerable similarity among subgroups of patients and spouses. Other variables were much more important than time since stroke in determining losses experienced by participants. Individuals become increasingly aware of disability-related losses during the months following a stroke. It is likely that the perceived losses remain relatively stable on a long-term basis.

The differences found in perceived losses based on right-side compared with left-side brain damage could be expected because of neuro-anatomical and therefore functional differences. Patients with seemingly mild aphasia mentioned communication as a significant loss. One patient, a retired professional who had minimal physical impairment and some word-finding difficulty, considered his stroke devastating. He was extremely depressed and frustrated at being unable to communicate “normally.” It is unclear why independence was not one of the top five losses mentioned by patients with left-brain strokes (although it was for their spouses). Individuals with left-brain (right-body) strokes tend to be aware of their deficits, and often more depressed than persons with right-brain (left-body) involvement.

Methodological Considerations

Qualitative data collection and analysis is both challenging and rewarding. Verbatim responses by individuals to open-ended questions provided a richer and more total impression of the experiences of participants as they lived with and adjusted to the effects of their strokes. Because of the subjective nature of the qualitative approach, it seemed a useful strategy to combine qualitative and quantitative methods. Data from each method can augment and reinforce the other.

 Self-reliance and independence are powerful values in American culture. “I can do it myself,” is a common phrase of toddlers and becomes incorporated as an approach to life for many American adults. The fear of becoming a burden haunts the elderly.

Relevance for Nursing Practice

The open-ended questions used in this study to gather information about perceived losses would be appropriate in clinical settings. The data collected as part of the nurses’ assessment of the impact of disability-related loss on the patient and spouse could guide nursing interventions.

This paper concludes with possible nursing interventions related to coping with losses following a stroke. Nursing interventions designed to facilitate patient independence might include: 1. Being an advocate for patient-goal setting and decision-making, and 2. Assisting the patient to be as involved as possible in the rehabilitation program.

For some patients, independence is more than and different from being able to dress, bathe, and groom without help. Some individuals choose to have their spouses assist more with activities of daily living than is physically required, in order to conserve time and energy for more highly valued activities.

Another important focus of nursing intervention suggested by this study involves consideration of the spouse or caregiver’s need for support and respite care on a long-term basis. Discussion of the stresses related to caring for a disabled spouse at home should begin soon after a stroke. The spouse’s ability to cope may be facilitated by the nurse’s knowledge of community resources as well as by the involvement of others in the patient’s care during hospitalization and soon after discharge. Aspects of self-care for the spouse or caregiver may include stress management, maintenance of personal interests and activities, and awareness of the impact of disability on the spouse’s life style, needs, and health. Helping couples adjust to losses associated with a stroke primarily involves the development of a balance between disability-related activities and other life activities.

Acknowledgments

This research was supported in part by:

National Research ’Training Award No. 5F31 NU-05350, Division of Nursing, BHP, HRA, PHS, DHHS.

Grant from Dean’s Development Fund, School of Nursing, University of Washington.

Grant from Hester McLaws Bequest, School of Nursing, University of Washington.

Presented at the Association of Rehabilitation Nurses’ Conference, Atlanta, GA, November 1985.

References

Adams J., & Lindemann E. (1974). Coping with long-term disability. In Coelho G., Hamburg D., & Adams J. (Eds.), Coping and Adaptation (pp. 127–138). New York, NY: Basic Books.
Benoliel J. Q. (1971). Assessments of Loss and Grief. Journal of Thanatology, 1, 182–194.
Stewart T., & Shields C. R. (1985). Grief in Chronic Illness: Assessment and Management. Archives of Physical Medicine and Rehabilitation, 66, 447–450.
Werner-Beland J. A. (1980). Grief responses to long-term illness and disability. Reston, VA: Reston Publishing Company.

Commentary

Christina M. Mumma, PhD, RN, CRRN, was a passionate rehabilitation nurse. Christina was a doctoral graduate in the first cohort at the University of Washington, a clinical nurse specialist in neurology/rehabilitation nursing at a Seattle hospital, and later became Professor Emerita of Nursing in 2005 at the University of Alaska in Anchorage. I had the privilege to serve with her in several leadership positions for the Association of Rehabilitation Nurses in the 1990s and early 2000s. Together we authored a chapter in Hoeman’s (2008) 4th edition rehabilitation book on research and nursing practice. Mumma published papers not only in RNJ but also in other peer reviewed journals, such as Western Journal of Nursing Research, OMEGA – Journal of Death and Dying, and The International Journal of Psychiatry in Medicine. Dr. Mumma died in 2008. Chris is remembered by her professional colleagues and students for research that left a critical body of work focused on people with serious disease, functional disability, and how it impacts their caregivers.

Mumma’s 1986 article in RNJ reports the results of research interview data collected about losses experienced by patients after stroke and the impact on their spouses. There were three major categories of loss that emerged from this study: Activities, abilities and characteristics, and independence. According to Mumma, the loss most often mentioned by patients was mobility; by spouses, it was traveling related to decreased independence (1986). It is interesting that patients’ dependence issues related to mobility and travel were before the Americans with Disabilities Act of 1990 became law; however, in some respects these issues still linger in 2020, e.g., lack of access to buildings built before 1990 that constrain independence or restroom accommodations that limit travel plans. Mumma’s 1986 study supports two major aspects of rehabilitation nursing practice that extend into 2020: 1) assisting patients’ independence (i.e., motorized wheelchair, ergonomically safe walkers with seats and 4-prong canes, as well as providing support to help patients function) and 2) spousal caregivers’ needs for psychological and/or physical support (i.e., in-person and/or online sustenance, meditation, or exercise groups) or respite care on a long-term basis (i.e., in-home assistance, day-away programs, and parish nursing for faith and healing that promotes wellness). True then, and now, from Mumma’s findings is that nurses need to consider how to facilitate patient independence by becoming an advocate for patient-goal setting and decision-making, and help patients be as involved as possible in their rehabilitation program. In addition, according to Mumma, nurses need to encourage spouses’ (and other caregivers’) ability to cope using nursing knowledge of community resources for persons with stroke during hospitalization and soon after hospital discharge (1986). While both laws and technology for people with disabilities have changed, what remains unchanged are human responses to stroke and other chronic conditions and how rehabilitation nurses provide adaptive interventions. Rehabilitation nurses are at the forefront of providing adaptive interventions to improve patients and their caregivers’ quality of life.

References

Americans with Disabilities Act. (1990). Pub. L. No. 101-336, 104 Stat. 328.

Mumma, C. (1986). Perceived losses following stroke. Rehabilitation Nursing, 11(3), 19–21, 24.

Pierce, L., Predieger, E., & Mumma, C. (2008). Research-based rehabilitation nursing practice. In S.Hoeman (Ed.), Rehabilitation nursing (4th ed., pp. 45 – 57). St. Louis, MO: Elsevier Science.

Wahlquist, G. (1986). Editorial: Publishing in a specialty journal. Rehabilitation Nursing, 11(3), 2.

Linda L. Pierce, PhD, MSN, RN, CRRN, FAAN

Associate Editor

Rehabilitation Nursing

© 2020 Association of Rehabilitation Nurses.