Are alternative long-term care programs needed for adults with chronic progressive disability?
Abstract: A study was conducted to determine whether 102 adults with progressive disabilities would choose other long-term care services over institutionalization when their conditions worsen. Chosen respondents were at high risk of institutionalization because of a fragile social support system. Most of those interviewed had muscular dystrophy. Results showed that, given the choice, most would utilize services such as home health aides, adult day-care and community residences instead of institutional care. Nurses are in a unique position to help such people assess their healthcare options.
Subject: Neurological nursing (Research)
Multiple sclerosis (Care and treatment)
Long-term care of the sick (Planning)
Nervous system diseases (Care and treatment)
Authors: Donohoe, Katharine M.
Wineman, N. Margaret
O'Brien, Ruth A.
Pub Date: 12/01/1996
Publication: Name: Journal of Neuroscience Nursing Publisher: American Association of Neuroscience Nurses Audience: Professional Format: Magazine/Journal Subject: Health care industry Copyright: COPYRIGHT 1996 American Association of Neuroscience Nurses ISSN: 0888-0395
Issue: Date: Dec, 1996 Source Volume: v28 Source Issue: n6
Accession Number: 19156191
Full Text: Abstract: Long-term care planning for middle-aged adults with progressive neurological impairment is a largely unexplored area. The purpose of this study was to examine factory that place individuals with progressive disability at risk for institutional placement and identify whether innovative long-term care preferences would be used if available. The sample of 102 clients with a diagnosis of multiple sclerosis (N = 92) or other progressive illnesses (N = 10) was mostly female, married and Caucasian, with an average age of 48 years. The social support network of family and friends was small; most tangible aid was provided by family members. Seventy percent of the participants used community services, the most common being a home-health aide (44%) and professional nursing services (21%). Medicaid insurance, severity of functional disability and lack of social support were associated with greater use of community services. Participants could fore see using long-term care alternatives such as a community residence (65%), adult day healthcare (63%) and family respite (46%), although these services were regarded with some ambivalence. With their knowledge of community resources, nurses are in a key position to make early assessments of clients, present and future care needs and to suggest needed modifications in living arrangements to avoid premature institutionalization.

Introduction

Most planning for long-term care has focused on elderly, developmentally disabled and mentally retarded persons. This study examined the need for and potential utilization of long-term care programs such as community residences, adult day health programs and family respite services for middle-aged adults with chronic progressive disability. The developmental and personal goals of individuals in this age group differ from those of the elderly, and these differences need to be considered when long-term care services are planned.

The impetus for this survey came from anecdotal reports of premature and precipitous admissions to skilled nursing facilities, unsafe housing situations and expressed family concerns such as an aging caregiver and poor health. The purposes of the survey were to systematically evaluate individuals at high risk for nursing home placement and determine whether individuals with a chronic progressive disability would use innovative long-term care services as an alternative to institutional placement. The majority of subjects had multiple sclerosis (MS), the most common neurological illness among young and middle-aged adults.

Background

The experience of having MS has been described as living life on a roller coaster,"[1] which refers to the dramatic ups and downs in the illness course. This perception is attributed to several clinical features of MS: the unpredictability of its remissions and exacerbations, the unpredictability of its severity and the combination of impairments, and its overpowering fatigue, which is worsened by heat.[20] Individuals with MS describe this unpredictability as unusually stressful, increasing their vulnerability and decreasing their ability to master living with the illness. Nevertheless, "chronically ill people struggle for a sense of balance, trying to control the illness rather than being controlled by it ..." (p. 26).[18] Families also make the necessary life and schedule changes to flexibly manage the illness, normalize their lives and safeguard the affected individual.' Effective strategies for coping include being able to accept the chronic illness, making the necessary environmental changes and developing a personal life philosophy.[1] Research findings suggest that both affected individuals and their families are actively engaged in the process of living with and managing the chronic illness. Whether they would use innovative long-term services to support and enhance their coping efforts, maintain a sense of normality and continue community living remains unknown.

It is generally accepted by health-care professionals that community living rather than institutional placement is the most desirable option for individuals with chronic illnesses. A key factor in keeping individuals in the community is the presence of informal supports.[2,9] Families provide most support for the chronically ill, disabled and elderly who remain in the community.[7,16,19] Family caregiving, however, comes with many burdens and losses[6,10] which may result in institutionalization. When a spouse is caretaker, the risk of institutional placement decreases.[3,8] Nonspousal caregivers are more likely to institutionalize family members earlier in the disease trajectory and at a lower level of disability.[22] It is not known, however, whether individuals with chronic progressive illnesses would use innovative long-term community care services to offset the effects of family burden and minimize the risk of institutionalization. Some evidence suggests that older caregivers who are caring for a spouse with more severe MS and with a higher number of care needs are more likely to use formal community services to help them manage and remain in the community.[24]

Method

Survey Sample ad Procedures

The volunteer, convenience sample surveyed in this study was selected from the membership of a northeastern MS society chapter (N = 993) Members were referred for participation by chapter staff members if staff felt these clients were at risk for institutionalization and therefore, could benefit from long-term care services now or in the future. Criteria for participation included age 18 years or older, ability to comprehend English and residence in the community. Subjects were initially recruited by letter and then telephoned to obtain consent. For those clients agreeing to participate, arrangements were made for a home interview. Nurses interviewed clients in their homes for the clients' convenience and because some study instruments required that the interviewer be able to observe the living environment. Written informed consent was obtained at the time of data collection.

Instruments

The semistructured interview schedule was pretested with MS Society clients and revised for clarity and completeness. This schedule was made up of six questionnaires: the Incapacity Scale, instrumental Activities of Daily Living Scale, Home Environmental Assessment, Social Support Questionnaire and the Hypothetical Future Choices Questionnaire. To ensure consistency in questionnaire administration, nurse interviewers read the questionnaires to clients and recorded their responses. These nurses were trained in the use of the questionnaires to increase interrater reliability.

The Incapacity Scale uses a 5-point Likert-type format to assess functional capacity of clients in 17 areas of physical disability.[14] Scale scores can range from 0-68 with higher scores indicating greater disability. The instrument was specifically designed for individuals with MS. items on the scale are summed to obtain a functional capacity level. Comparisons between the Incapacity Scale and other scales measuring physical disability have yielded correlations of .84 and .87, documenting construct validity.[14] The internal consistency estimate in the present study was .89 using Cronbach's alpha.

The Instrumental Activities of Daily Living (IADL) Scale measures competence in managing complex activities of daily living such as shopping, food preparation, transportation and laundry. On the 8-item Likert-type scale, a score of "0" indicates no problem, "1" or "2" indicates moderate disruption and "3" indicates severe impairment. Scores can range from 0-24 with higher scores indicating greater impairment. Items on the scale are summed to obtain an overall IADL level. Lawton and Brody reported acceptable levels of reliability (r = .85) and construct validity for the IADL Scale.[15] The alpha reliability coefficient in this study was .87.

The investigators developed the Home Environmental Assessment for this study based on a clinical assessment tool used to evaluate independent living skills; content validity was therefore assumed. Areas assessed were determined in consultation with an occupational therapist whose practice encompassed home accessibility assessment. Thirty-four areas in the home in six major categories, were evaluated: the outside, main living rooms, bathrooms, kitchen, bedroom and emergency exit. The nurse interviewer and client went from room to room to discuss and evaluate the home's current and future accessibility in each of these categories. For example, in the category bathroom, the nurse and client discussed both the bathroom's current accessibility in light of the client's disability and its accessibility should the client become wheelchair-bound. The interviewer and client made separate assessments of accessibility. Items were rated using a yes/no format. Scores on this instrument were obtained by summing the frequency of negative responses and converting this sum to a percentage of the total number of responses in any one area.

A Social Support Questionnaire was also designed for this study. The instrument assessed five common social support dimensions: current assistance received with financial management, household chores, personal care, advice and guidance and emotional support.[8,11] Social support was classified as informal or formal. Informal supports included family and friends; formal supports included the help obtained from community services. For each social support dimension, informal support was measured by asking subjects if they had someone available to assist in the area. Subject responses were recorded using a yes/no format, and data were summarized by calculating the average number of people available to assist. For formal support, subjects were questioned about the kinds of services they received, and their answers were categorized. Frequencies and percents were used to summarize the types of services used. Information was also collected about the number of hours per week services were received. In addition, the questionnaire included a question on overall satisfaction with social support, measured on a 10-point Likert-type scale ranging from 1 (extremely dissatisfied) to 10 (extremely satisfied). Since the scale was based on existing instruments,[8,11] content validity was assumed.

The Perceived Future Needs Questionnaire was designed for this study to directly measure client interest in using long-term care services. The services evaluated included community residences, adult day health programs and family respite services. Community residence was defined as a free-standing supportive facility similar to a group home and intermediate care facility. An adult day health program was defined as a weekday, 8am to 5pm program with a full range of professional services like those provided to the elderly. Family respite service was defined as a 24-hour "short stay" facility which provided comprehensive care during family vacations and emergencies.

There were three types of questions on this questionnaire. The first type asked clients whether they could foresee needing long-term care services in the future; clients responded using a yes/no format. Scores were calculated by counting responses and reporting them as percentages of the total number of subjects responding to each item. The second type asked clients about the importance of developing services; they rated each service on a 10-point Likert-type scale. Finally, open-ended questions asked clients to list the circumstances under which they would use these services and to identify problems they might foresee in using the services. Responses to these open-ended questions were categorized and reported as frequencies and percentages. Because clients, responses on this questionnaire might not actually predict what they would do in the future, the Hypothetical Future Choices Questionnaire was designed to indirectly confirm the subjects, directly stated long-term care preferences.

The Hypothetical Future Choices Questionnaire presented the client with five vignettes which posed hypothetical long-term choices, including moving to a nursing home, staying at home with aide service or using one of the three proposed long-term care services. The vignettes were composites of situations encountered by the researchers, thus assuring content validity. Both the Hypothetical Future Choices and Perceived Future Needs Questionnaires were pilot tested to ensure that clients understood the questions and directions. These two questionnaires provided information that could not otherwise have been obtained. Additionally, the use of both a direct and an indirect measure helped ensure that clients' choices would reflect what they would actually do if faced with similar circumstances in the future. Confirmation of responses in this way provided some indication of the validity of measurement.

Results

Sample

The sample of 102 clients included about 10% of the northeastern MS chapter's population. Ten of the 102 did not have MS but were chapter members referred by staff members to the researchers. These 10 individuals were included in the research for two reasons. First, they had other chronic disabling conditions that impaired their mobility, making their long-term care needs similar to those of clients with MS. The chronic disabling conditions included arthritis (N = 2), Friedreich's ataxia and cerebellar degeneration (N = 3), demyelinating disease (N = 3), arteriovenous malformation (N = 1). and spinal cord tumor (N = 1). Second, these 10 subjects were selected by chapter staff members because they were at risk for premature placement in a long-term care institution. There were no significant differences in gender, age, or race between the sample, nonparticipants (refusals) and the total MS society chapter population.

Sociodemographic Characteristics

The average age of the sample was 48.4 years (SD = 12.3) range = 24-78). Subjects were primarily Caucasian (95%), female (71%) and unemployed or retired (94%) most had more than a high school education (61%). The average participant had worked as a skilled craftsman or clerical worker, according to Hollingshead's Four Factor Index of Social Status.[12] Thirty-seven percent of the sample were married, 26% separated or divorced, 15% widowed and 22% never married. Thirty percent lived alone, 16% with parents, 22% with a spouse, 11% with both spouse and children, 12%. with children only and 8% with friends or other relatives. For 67%, the yearly family income was less than $15,000. There was a wide range of health insurance coverage, including Medicare (68%), Blue Cross (53%), Medicaid (30%), health maintenance organizations (20%) and private insurers (9%). Two subjects did not have any health insurance.

Extent of Functional Capacity

There was a full range of disability observed in the sample (mean score on the Incapacity Scale = 25.05, range = 7-59, SD = 11.5). Subjects were moderately to severely disabled, with 48% using a wheelchair full- or part-time. Ambulation, climbing stairs, fatigue and role-related problems were frequently cited as areas of severe difficulty (Table 1); only 9% of the sample had severe impairment in mentation and mood.

Table 1. Major Areas of Functional Disability (N = 102)

Note: Results from Incapacity Scale, Kurtzke, 1981.

The Instrumental Activities of Daily Living Scale score averaged 10.46 (SD = 6.0, range = 0-24) (Table 2). Areas of daily living in which many participants reported moderate or severe disruption were shopping, food preparation, housekeeping, transportation, and laundry.

TAble 2. Percentage of Subjects with Disruption in Instrument Activity of Daily Living (N =102)

Note: Results from Instrumental Activities of Daily Living Scale, Lawton & Brody, 1969.

Social Support

The social support network available to provide emotional support and tangible aid included, on average, five people, with an even mix of family or friends and professionals. Social support was judged as satisfactory, ie, the mean rating on the 10-point Likert-type scale used to measure overall satisfaction with social support was 8.5 (N = 97, SD = 2). Most participants reported receiving emotional support (88%), advice and guidance (85%) and help with household chores (83%); a minority reported assistance with personal care (38%) and financial help (33%). Subjects reported that family members provided most of the tangible aid, including financial support (98%) and help with household chores (66%) and personal care (65%). Emotional support such as advice and guidance (59%) and active listening (43%) was provided primarily by friends and professionals.

There were no differences in social support based on gender or income. However, clients who lived alone (N =30) reported receiving less personal care (20%, [[Chi].sup.2] = 14.5, p = .002) than those who lived with others. Clients who lived alone received more emotional support (80%, [[Chi].sup.2] = 10.5, p = .01). The severely disabled reported receiving more personal care (61%, t = -6.89, p = .0001) than those who were less disabled. The severely disabled also reported receiving less advice and guidance (t = 2.67, p = .009).

Seventy-one clients reported using community services in addition to the support provided by family and friends (Table 3). Of these, 44% required a home health aide, 21% professional nursing services, 7% physical therapy, 3% occupational therapy 37% MS society chapter services (including transportation and recreational services), 34% community transportation services and 14% a housekeeper or cleaner. Services were used an average of 33 hours per week (range 1-44 hours). Personal care-oriented services, such as home health aides (mean = 16.3 hours, range 1-44 hours) and nursing services (mean = 4.5 hours, range 1-35 hours), accounted for the highest number of hours. The average weekly cost of these services was $45 (range = $0-$287), and Medicaid was the primary payer. Services provided by the MS society chapter are not included in these figures because they were not covered by insurance and were provided free or at a nominal cost. Overall satisfaction with the services received was high (mean = 8.4, SD = 2.3, range 1-10).

Table 3. Use of Community Services (N = 71)



Age, instrumental activities of daily living, gender, living situation and family income were not related to community service utilization. However, subjects who were severely disabled reported more use of community services than those with mild to moderate disability (t = 2.95, p = .005). Those who were less satisfied with their social support network also used more community services (t =1.92, p = .05). Transportation services were used more by those who lived alone ([[Chi].sup.2] = 14.74, p = .002) or had a yearly income of less than $10,000 ([[Chi].sup.2] = 7.51, p = .02).

Home Accessibility

The majority of the clients (62%) lived in homes owned by themselves, spouses or parents; the remainder rented (38%). Forty-one of the 78 private homes were one-story and 37 were 2-stories. Fifteen of the apartments included features designed to support the handicapped. Most of the homes were rated by nurse interviewers as very comfortable (mean = 8.2 SD = 1.7 range = 4-10) and supportive of the clients, present abilities (mean = 7.6, SD = 2.1, range = 0-10). However, there were concerns about the safety of the environment with future functional decline (mean = 6.2, SD = 2.6, range = 0-10). Interviewers noted a need for ramps and bathroom modifications and were concerned about safety in case of an emergency. In 66% of cases, there was no emergency exit from the bedroom or primary sleeping area.

Many areas of the homes would not meet the needs of clients using wheelchairs. Problems included steps, small door frames and inadequate turning space in the bathroom. Table 4 lists the mean percentage of each area that might not meet the client's future needs. The percentages are given separately for nurses and clients. The clients consistently underestimated the number of changes that would be needed to promote functional independence and maintain safety.

[TABULAR DATA NOT REPRODUCIBLE IN ASCII]

Interest in Long-Term Care Services

Participants, responses about long-term care service utilization were generally positive. Sixty-five percent could foresee using a community residence, and 63% an adult day health program. Only 46% said that they would use the family respite service; many, however, lived alone or did not have family involved. When asked to rate the importance of these services (on a 10-point scale), a community residence was rated 8.3, adult day healthcare facility 7.4, and family respite service 8.1.

The conditions under which the client would use these services focused on anticipated disease progression and increasing disability, caregiver loss, strain or illness and the need for more socialization. Of the clients who said they would use a community residence (N = 77), 52% said they would use it if their illness worsened and 44% would use it if they lost their caregiver. Of those who would use an adult day health program (N = 67), 36% would use it to increase socialization and 34% if the illness worsened. Of the 53 clients who indicated that they would use family respite services, 53% would do so to provide a vacation for the caregiver.

Participants saw several potential problems related to use of long-term services-- stigma, loss of independence, need for physical and tangible assistance and need for transportation. Of the 76 subjects who indicated that they would use a community residence, 28% did not want to live with nonfamily or other disabled individuals; 22% were concerned about loss of independence and adhering to an institutional schedule. Of those clients expressing an interest in adult day healthcare (N = 67), 39% could foresee problems related to transportation and 33% were concerned that their physical care needs could not be met by such a program. For the 45 clients who indicated an interest in family respite services, 29% feared loss of independence and 24% anticipated difficulty adjusting to a non-family environment. These concerns did not vary by degree of disability.

In the responses to the five vignettes on the Hypothetical Future Choices Questionnaire, the most common choice was to stay home and hire a home health aide (42%), followed by a community residence or other long-term care alternative (34%). Twenty-six percent chose having a roommate or other nonprofessional and 10% opted for living with parents or other relatives. Moving to a nursing home was the least frequent choice (8%).

To account for client ambivalence and possible denial of long-term care needs, the consistency of responses was evaluated in two ways. First. responses on the Perceived Future Needs Questionnaire were compared with responses to questions about the use of services and the importance of their development. in all cases, those who said they would use a service rated its importance significantly higher than those who would not use it (community residence: mean = 9.3 versus 6.7; adult day care health service: mean = 8.4 versus 5.4; and family respite service: mean = 9.11 versus 7.2).

Second, client responses to the vignettes on the Hypothetical Future Choice Questionnaire were compared with their answers on the Perceived Future Needs Questionnaire to determine whether these indirect responses confirmed their directly stated long-term care choices. Subjects who said they would use a community residence ranked it first in only two of the five hypothetical situations; subjects who said they could foresee using an adult day health service rated the community residence as a first choice in one of the five hypothetical situations.

Discussion

This survey explored whether long-term care alternatives to institutional placement would be used by adults with MS or other chronic progressive diseases. Some respondents said they would use innovative long-term care options such as a community residence, adult day healthcare and family respite services. However, some inconsistencies in their responses to direct and indirect questions about long-term care options and differences between the nurse interviewers' and clients' ratings of future home accessibility suggest that clients may be denying their need for future long-term care.

Most of the participants in the study had comfortable homes that were modified to suit their functional ability. However, many of the areas in the home would. not meet the needs of clients using wheelchairs. It has been noted elsewhere that clients and caregivers often have discrepant views on how much care is needed.[4] Whether clients underestimate their needs due to denial and unawareness or caregivers overestimate needs due to burden and projection is unclear. Further study would be required to clarify this issue.

Study participants were a disadvantaged population: one-third were living alone with severe functional impairments and 30% were on Medicaid with incomes of less than $15,000 each year. Further, because families provide the broad based support that decreases the risk of institutional placement,[17,21,22] the small size of their social support networks made these respondents vulnerable to institutionalization. Their networks averaged about 5 members, and less than 3 were family members. This compares poorly with reports of an average network size of about 10for the disabled. Only one other study has reported an even smaller network; 2-3 members for individuals disabled by spinal cord injury.[5]

The literature indicates that community services are rarely used by the elderly and disabled.[16,21] Consistent with this literature, family members in the present study provided most of the assistance for household chores and personal care. Some authors suggest that families perceive supportive services as relatively unavailable and poor in quality.17 A study of caregivers of individuals with MS noted that 45% had not used any form of community services; caregivers were either unaware of the services or regarded them unfavorably.[4]

Utilization of community services, particularly home health aides and transportation, was slightly higher in the present sample than in two mailed surveys of other MS populations.[4,13] In both Cockerill and Warren and Kraft et al's surveys, the number of clients who used services and the number of hours per week were considerably less than would be expected.[4,13] The functional disability in the present sample, however, was greater than in these two studies and this might account for the different findings. Also, because the present study used trained nurse interviewers rather than mailed questionnaires, estimates of utilization are probably more accurate. Finally, since Cockerill and Warren's study was conducted in Canada, contrasting findings may be attributable to differences between the United States, and Canada's health-care reimbursement system.

On direct questioning, most participants in the present study supported long-term care options; over 60% said that they could foresee using a community residence or adult day health service in the future. Participants, reasons for using these long-term care services included deterioration of physical condition, caregiver's illness and socialization needs. Given the present level of functional disability of the sample, the small social support networks of many, and the poverty level of some, it is unclear how bad things would have to get before alternative living arrangements would be chosen. Current types of long-term care are designed to serve the elderly, developmentally disabled, mentally retarded and mentally ill, and they might be viewed as a last resort, rather than supportive of community living. However, the consistency of subjects, responses provides a strong indication that alternative long-term care services are needed and would be utilized.

After completion of this research, the clinical observations of one of the investigators provided anecdotal information confirming the importance of expanding and enhancing such community services. Over 15% of the study subjects had changes in living arrangements after the research ended. The majority of these were over age 40 years, left private homes and were admitted to skilled nursing facilities. All of the 9 individuals admitted to nursing homes were single, separated or divorced; 5 of the 9 had lived with their mothers as caregivers. Two women had lived with children but were institutionalized due to severe disability. The eighth person, estranged from his father and living alone, became too disabled to stay by himself. The ninth man was institutionalized by his spouse because of severe disability and marital discord. Two clients with MS who had been living alone moved in with family. One person with severe cognitive dysfunction based upon clinical observation moved to another state to be closer to a sister; the other moved in with parents, after being abandoned first by a spouse and then by an adolescent son. A widow who had lived with her teenage son was initially cared for by a nonrelated family member but then moved in with someone else. These situations underscore the importance of providing long-term care services to enable disabled adults to continue living in the community.

Nursing Implications and Recommendations

Several limitations need to be kept in mind when interpreting these results and discussing their implications for practice. The sample size was relatively small and was one of convenience. Thus, the sample may have been biased and the results may not be generalizable to other adults with chronic progressive disabilities. Some instruments were designed for this study and may not have had acceptable levels of reliability and validity. Because of these limitations, results should be cautiously applied to nursing practice.

With these caveats in mind, the findings suggest that early preventive nursing interventions aimed at providing needed social and structural supports may help clients remain in the community for a longer period of time. Because of their knowledge of the community and community services, nurses are in a key position to make early assessments of clients' present and future care needs and to suggest needed modifications in living arrangements. As discussed by Wineman and Schewtz,[23] and supported by the present research, nurses also have an important role in coordinating the multidisciplinary services needed by clients to maintain them in the community. Further, since family and friends are central to community living, nurses may provide indirect care by ensuring that family respite services are available and accessible. In addition, nurses may act as political advocates by helping to remove barriers to community care such as lack of transportation and inadequate financial reimbursement. Nurses can help clients discuss their feelings about relying on long-term care services and the potential stigma. By allowing clients to verbalize their concerns, nurses may facilitate clients' utilization and acceptance of such services. Nurses may also act as advocates by ensuring that clients, care needs are heard and that they are empowered to determine what services are provided to meet these needs. Since the results of this study suggest that clients might use innovative long-term care services to support community living, nurses need to be political advocates for the development of services that are appropriate for middle-aged adults with a chronic progressive disability.

The present study suggests that clients underestimate their care needs; this underestimation may be due to denial or unawareness. A prospective study designed to examine the relationship between clients, perceived care needs and their subsequent utilization of community services would shed light on this issue. In addition, determining whether the provision of innovative long-term community services has a positive effect on clients, subjective and objective quality of life would make a valuable contribution to our knowledge. Whether the caregiver burden of family and friends would also be decreased by innovative long-term services is another unexplored area that would be important to investigate.

Summary

Most people affected with chronic progressive disabilities are relatively young and at a productive time in their lives. The present research examined the long-term care needs of adults with progressive disability and explored whether they would use innovative long-term services as an alternative to institutionalization. Study participants (N = 102) lived in the community but were at high risk for nursing home placement. Home interviews were conducted to collect information about functional capacity, activities of daily living, home accessibility, social support and perceived future needs and hypothetical future choices. The results generally indicate that, if available, clients with progressive disability would use innovative long-term care alternatives such as a community residence, adult day healthcare and family respite services, though these services were regarded with some ambivalence.

Acknowledgements

The authors gratefully acknowledge the clients who participated in this study; the six nurse interviewers, Pat Hansen, Pat Clark, Jane Armer, Pam Kremin, Sandra Parker and Ellen Pearson, the data analyst and programmer, Rosie Pratt, and the graduate student assistant at The University of Akron, Lyn Little. The administrative guidance of James Ahearn and Nancy R. Nealon at the Rochester, NY, Area Multiple Sclerosis Society, was appreciated. Funding was provided by the Glen and Maude Wyman Potter Foundation Trust, Rochester, NY, and the National MS Society, Health Services Research.

References

[1.] Barton JA, Magilvy JK, Quinn AA: Maintaining the fighting spirit: Veterans living with multiple sclerosis. Rehabil Nurs Res 1994; 3(3):86-96.

[2.] Biegel DE, Sales E, Schulz R: Family Caregiving in Chronic Illness, Vol 1. Sage Publications, Inc, 1991.

[3.] Brody S, Poulshock SW, Masciocchi E: The family caring unit: A consideration in the long-term support system. Gerontologist 1978; 18:556-561.

[4.] Cockerill R, Warren S: Care for the caregivers: The needs of members of MS patients. J Rehabil 1990; 56(1):40-44.

[5.] Decker D, Schulz R: Correlates of life satisfaction and depression middle-aged and elderly spinal cord-injured persons. Am J Occup Ther 1985; 39(11);740-745.

[6.] DesRosier MB, Cantanzaro M, Pillar J: Living with chronic illness: Social support and the wellspouse perspective. Rehabil Nurs 1992; 17(2):87-91.

[7.] Doty P: Family care of the elderly: The role of public policy. Milbank Q 1986; 64(1):34-75.

[8.] Fiore J, Becker J, Coppel DB; Social network interaction; A buffer or a stress. Am J Community Psychol 1983; 11:423-439.

[9.] Ford AB, Roy AW, Haug MR, Folmar SJ, Jones PK: Impaired and disabled elderly in the community. Am J Pub Health 1991; 81:1207-1209.

[10.] Foxall BJ: Eckberg JY, Griffith N: Spouse adjustment to chronic illness. Rehabil Nurs 1986: 11(2):13-16.

[11.] Hirsch BJ: Natural support systems and coping with major life changes. Am J Community, Psychol 1980; 8:159-172.

[12.] Hollingshead AB: Four Factor Index of Social Status. (Available from August B. Hollingshead, Department of Sociology, Yale University, P.O. Box 1965, New Haven, CT 06520). 1975.

[13.] Kraft GH, Freal JH, Coryell JK: Disability, disease duration, and rehabilitation service needs in multiple sclerosis: Patient perspectives, Arch Phys Med Rehabil 1986; 67:164-168.

[14.] Kurtzke JF: A proposal for a uniform minimal record of disability in multiple sclerosis. Acta Neurol Scand 1981; (Suppl. 87), 64:110-129.

[15.] Lawton MP, Brody EM: Assessment of older people: Self-maintaining instrumental activities of daily living. Gerontologist 1969; 9:179-186.

[16.] Mindel CH, Wright R, Starret RA: Informal and formal health and social support systems of black and white elderly. Gerontologist 1986; 26:279-285.

[17.] Perlman R (Ed): Family Home Care: Critical Issues for Services Policies, Haworth Press, 1983.

[18.] Quinn AA. Barton JA, Magilvy JK: Weathering the storm: Metaphors and stories of living with multiple sclerosis. Rehabil Nurs Res 1995; 14 (1):19-27

[19.] Shanas DJ: The family as support in old age. Gerontologist 1983; 19:169-174.

[20.] Slater RJ: A model of care@ Matching human services to patients, needs. Neurology, 1980; 30(2):39-43.

[21.] Smallegan M: There was nothing else to do: Needs for care before nursing home admission. Gerontologist 1985; 25:364-369.

[22.] Soldo B, Myllyluoma N: Caregivers who live with the dependent elderly. Gerontologist 1983; 20:649-655.

[23.] Wineman, NM. Schwetz KM: Response to "Health-promoting behaviors and quality of life among individuals with multiple sclerosis." Schol Inq Nurs Pract 1995; 9(1):51-55.

[24.] Winslow B, O'Brien RA: Use of formal community resources by spouse caregivers of chronically ill adults. Public Health Nurs 1992; 9:128-132.
% Normal   % Moderate   % Severe
                                            Disability   Disability

Stair climbing                       3          40           57
Toilet transfer                     23          54           23
Ambulation                           5          47           48
Chair transfer                      19          56           25
Bathing                             10          56           34
Dressing                            19          54           27
Bladder function                    22          52           26
Bowel function                      50          34           16
Vision                              10          76           14
Fatigue                              7          50           43
Grooming                            33          44           23
Feeding                             44          43           13
Speech/hearing                      58          38            4
Other medical problems              19          74            7
Societal-role-related problems       3          43           54
Psychic function                    26          65            9


Type                       % No Problem   % Moderate   % Severe
                                          disruption   disruption

Shopping                        10            62          28
Food preparation                20            44          36
Housekeeping                    20            42          38
Transportation                  27            67           7
Laundry                         31            17          52
Telephone                       78            20           2
Medication responsibility       66            22           8
Handling finances               51            31          17


Type                    %    Mean hours/week   Range
Home health aide        44        16.3         1-44
Nursing services        21         4.5         1-35
MS chapter services     37         1.8         1-06
Housekeeper             14         1.7         1-04
Transportation          34          .9         1-06
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