Evaluation of a medical rehabilitation and independent living program for persons with spinal cord injury.

Independence in a medical setting entitles patients to make decisions about their lives. It allows them the right to make choices. Although much has been said about independence in relation to rehabilitation, most medical rehabilitation programs both fail to encourage independence and to prepare persons with disabilities to develop their maximum potential for productivity, quality of life, and social participation after hospitalization (Purtilo, 1988; Nosek, Parker and Larsen, 1987).

Typically, once the medical team determines that patients have made sufficient gains to warrant discharge, they are suddenly awarded with the control over their health care and other life decisions. However, since the patients' initial rehabilitation has been provided within a system that fosters dependency and emphasizes their sick role, these persons often find themselves unprepared to manage their fives independently after discharge.

The purpose of this article is to describe the evaluation of a collaborative medical rehabilitation and independent living (IL) program that was designed for persons with new traumatic spinal cord injury (SCI) at the University of Nectigan Model SCI Care System. Sponsored by a grant from the National Institute on Disability and Rehabilitation Research, the "Hospital to Community" program prepares SCI persons for community reintegration and for acquiring more control over their lives after the sudden onset of a new disability.

The focus of traditional medical rehabilitation has been on achieving maximal independence in activities of daily living by remediating the patient's physical limitations (DeJong, 1981). In contrast, the consumer-based IL paradigm offers to persons with disability freedom from unwanted and unnecessary physical and psychological dependence. It offers options and encourages self-sufficiency and self-determination in daily routines, social identity and life choices. The locus of the problem according to this paradigm is not in the individual but rather the surrounding environment, including the rehabilitation process itself. To cope with environmental barriers, persons with disability must shed their patient roles for consumer roles. Advocacy, peer counseling, self-help, consumer control, and barrier removal are the trademarks of the IL paradigm (DeJong, 1983). The IL and the medical rehabilitation paradigms can complement one another and recognition of the potential benefit of collaborative efforts is growing (Fuhrer, 1990). Both paradigms afford the client the opportunity to benefit from their specific positive aspects.

As described in a comprehensive program manual, staff for the "Hospital to Community" program included a Community-based IL specialist from the AACIL, trained Peer Resource Consultants (PRCs) from the community, and a Hospital-based IL specialist who had a background in rehabilitation counseling or occupational therapy and who possessed unique knowledge about independent living issues (Rasmussen, Tate, Casoglos, Wolf, Maynard & Magyar, 1989). The program entailed 60-70 hours of activities and occurred during six to eight weeks of the patient's initial rehabilitation hospitalization.

Being multi-modal in design, the program consists of (a) educational classes that were taught by AACIL staff and rehabilitation counselors about employment housing, personal care attendant management, leisure and recreation, advocacy and benefits; (b) group support sessions that were jointly led by the Hospital IL specialist and the Community-based specialist on topics such as adjustment to disability, problem solving skills and sexuality; (c) community trips selected and arranged by the patient; (d) peer resource consultant meetings; (e) and patients' attendance at their own hospital chart rounds meetings.

Method

Design

This study was designed to test the hypotheses that by discharge from the hospital, SCI patients who were program participants would: gain knowledge about their disabilities and about independent living; and hold more positive attitudes towards persons with disabilities. At one year post-injury, participants would: demonstrate less psychological distress, and live in less restrictive environments than SCI patients who did not participate, thus being more in control of their own lives.

A quasi-experimental, nonequivalent control group design was used to evaluate program results, due to difficulties associated with finding a control group of SCI patients with the exact same characteristics as the experimental group. Evaluation methodology included the use of repeated measures: pre-program (at admission to rehabilitation) and post-facto (at discharge; and one year post-injury). To begin ascertaining the presence of significant differences between the experimental and comparison groups on selected program outcomes, non-pairwise Student tests were calculated. Tests were also used to determine specific modulating factors with the potential to influence these outcomes. Using information obtained from these univariate analyses, multiple regression models were then specified to further determine group differences, thus holding constant pertinent modulating factors. Subjects: The data for the present study were drawn from the records of 119 patients admitted to the SCI rehabilitation unit who met the eligibility criteria of having new traumatic SCI, being between the ages of 17 to 65 and without cognitive deficits or the diagnosis of psychiatric disorders. Because individual choice is central to the IL philosophy, program participation was made voluntary. Not all 69 participants completed all program modules. Participation rate ranged from 94 to 82% for the program introductory modules and educational classes respectively, to 43% for PRC meetings and 42% for attendance at chart rounds. The overall average program participation rate was of 66%. Most subjects, once engaged in the program, showed commitment and only stopped coming to program sessions once they had completed all of the planned activities.

Nonparticipants included 50 SCI patients receiving rehabilitation at the same time as the participants but in order to establish a control or comparison group, these subjects were not offered the program. The average length of hospital stay for participants was three months, while for nonparticipants, it was 2.7 months. This difference was statistically not significant. The two groups were also not different in terms of average education and employment status.

However, some group differences were observed: participants tended to be younger than nonparticipants (mean age of 27.5 years versus 35.7 for nonparticipants); were single (75% versus 48%); had a diagnosis of quadriplegia (59% versus 42%); and had their rehabilitation sponsored by non-catastrophic payors (i.e., Medicaid and Private Insurance). Catastrophic payors include Michigan Automobile NoFault which offers unlimited lifetime benefits, and Workers Compensation.

During analysis, these differences between participants and nonparticipants were controlled by using multiple regression models and holding constant the effect of each variable.

Evaluation Instruments

The following instruments were administered to all subjects: the Brief Symptom Inventory (BSI); the Restrictiveness of Living Arrangements scale; the Attitudes Toward Persons with Disability (ATDP); the Independent Living Program Questionnaire (ILPQ); and the Program Satisfaction Questionnaire (PSQ). All instruments, with the exception of the PSQ, were administered on a pre and post-test basis. The PSQ is a Likert scale with 10 questions regarding participants' overall impression of the program and of its benefits. The ILPQ, a 40-item multiple choice and true/false test, was designed to assess knowledge about independent living, disability and community resources. The ATDP (Yuker and Block, 1980), is a 20-item Likert scale designed to measure attitudes, toward disabled persons. Reliability coefficients range from .69 to .79 for the ILPQ and from .66 to .96 for the ATDP. The Restrictiveness of Living Arrangements scale was developed by DeJong and Hughes (1982) to classify the physical and social restrictiveness of subjects' various living arrangements using a 3 point scale: (1) living in an institution; (2) living with family who provide economic support; and (3) living alone or with others but sharing expenses. The BSI (Derogatis and Spencer, 1982), is a 53-item self-report symptom inventory which indicates the presence of psychological distress. Patients are asked to rate their symptoms across nine different symptom areas of distress. These include: somatization, obsessive compulsive, interpersonal sensitivity, depression, anxiety, hostility, phobic anxiety, paranoid ideation, and psychoticism. The BSI also provides a total score or General Severity Index (GSI) of distress and two other indices: the Positive Symptom Distress Index (PSDI) and the Positive Symptom Total (PST). Reliability for the BSI is reported to range between .80 and .90.

Results

Program Knowledge

Participants demonstrated having acquired significantly more knowledge about disability and independent living issues upon the completion of the "Hospital to Community" program when compared to nonparticipants. While there were no group differences prior to program implementation, significant differences were observed at discharge from the hospital (t=3.77; p.001).

An item analysis of subjects' responses on the ILPQ shows that subjects learned about the IL philosophy, environmental accessibility and housing, personal care assistance, employment and recreation options, assertiveness skills, consumer advocacy and financial benefits.

Attitudes Toward Persons with Disability

There were no significant differences between the two groups' overall attitudes towards persons with disabilities before or after the program. Participants obtained an average score of 80 (SD of 18.18) at admission and of 82.31 (SD of 18.85) at discharge, while the average nonparticipants' score was of 70.61 (SD of 25.17) at admission and 75.31 (SD of 25.69) at discharge.

Restrictiveness of Living Arrangements

Initial findings resulting from non-pairwise Student tests suggested that nonparticipants lived in less restrictive living arrangements at admission in comparison to participants (t=-2.89; p.005). Non-significant findings were found at discharge and at the one-year post-injury times. Similarly, when a multiple regression model was used to evaluate group differences in restrictiveness of living arrangements one year post-injury, thereby controlling for systematic differences between the experimental and comparison groups, no significant differences were found, verifying the results of the univariate analyses.

Age was not included in this model since previous analysis had demonstrated that it is not a significant predictor of restrictiveness. Marital status was the only variable with a significant effect on predicting restrictiveness of living. When its effect was controlled for in this multivariable context, there were no differences between program participants and nonparticipants in terms of the restrictiveness of their post-injury living arrangements.

Psychological Distress Post-Injury

Post-injury psychological distress was measured using the BSI. When one-year post-injury distress levels were analyzed using a multiple regression model, participants' distress levels were found to be significantly lower than those of the nonparticipants (p.05). Besides program participation, other significant factors with a significant effect on determining follow-up distress levels included: admission distress levels (p.001); completeness of SCI injury (p.02); type of insurance sponsorship (p.01) and employment status (p.01) at the time of injury. These findings suggest that SCI persons with complete injuries, who were less distressed and employed at admission, possessing catastrophic rehabilitation insurance, and who had participated in the "Hospital to Community" program were less likely to be distressed one year post-injury. Program Satisfaction

Seventy-nine percent (79%) of the participants reported that the program prepared them to go home and 83% felt that their learning was useful. Most participants (83%) felt positive about attending their own chart round meetings at which they were able to voice their concerns to the rehabilitation team. Fifty-seven percent (57%) expressed being comfortable sharing their feelings during group support sessions and 66% being more confident when having to speak up for themselves, as a result of participation in the program. Finally, 94% would recommend the program to someone else.

Discussion

The results of the present set of analyses suggest specific benefits for participants who completed the "Hospital to Community" program during their inpatient rehabilitation stay. By the time of hospital discharge, participants had learned about various independent living issues. In addition, participants were pleased with the program, and felt better prepared to return to their communities. While program satisfaction and assimilation of information provided by the program are important accomplishments of this collaborative medical-IL program, like any other rehabilitation program, this one's success can be best ascertained more adequately by analyzing its potential long-term effects on participants. Viewed from this perspective, the program's greatest impact has been for decreasing participants' levels of psychological distress after injury. Support for this funding has been demonstrated by previous rehabilitation research (Trieschman, 1987; Frank & Elliott, 1987; Frank, Umlauf, Wonderlich, Askanazi, Buckelew & Elliott, 1987), which has shown that there appears to be a direct relationship between improved personal adjustment and positive rehabilitation outcomes, such as one's ability to function appropriately in society after the occurrence of disability.

One could speculate that an increased level of personal awareness or of knowledge about IL and disability issues might have a positive effect on the person's psychological adjustment to disability and his/her willingness to come to grip with their new self-identity. By contrast, results showed no significant attitudinal changes between the two groups by discharge. Perhaps this finding could be best explained by the fact that attitudes are often defined as more enduring personal traits or values, therefore, requiring longer periods of object exposure (in this case, to persons with disabilities) before such changes can take place.

Lastly, the restrictiveness of one's living arrangements appears to be mostly influenced by one's marital status, and not by program participation. Indeed, a prerequisite for independent living is, thus, access to physical and emotional support in one's social environment. For SCI persons, this is most often provided by a committed and caring spouse.

In summary, even though the program promotes specific knowledge acquisition and appears to increase post-injury psychological adjustment, these factors alone are not sufficient to compensate for the major functional losses associated with SCI. Learning specific skills does not necessarily insure the independent living goals proposed by the program.

These skills cannot be fully actualized into positive IL outcomes until social and environmental resources (i.e., appropriate equipment, transportation, housing) are uniformly made available for persons with disabilities. This conclusion lead us to believe that many changes still need to take place within our current disability policy system for anyone to fully reap the benefits of programs similar to this one.

It should be noted that the inherent limitations associated with this study's sample selection have contributed to the complexity of interpreting program's results. Increasing the sample size should allow for a refinement of this study's design, thus better addressing the issue of program participation rate and individual choice in participation.

Demographic and Injury-Related Characteristics of

Samples 1 and 2

Variables                 Sample 1*            Sample 2**

Age                    X=27.5; SD=9.7     X=35.7; SD=13.1
Gender(%)
  Male                       86.9                  76
  Female                     13.1                  24
Injury Level(%)
  Paraplegia                 41                    58
  Quadriplegia               59                    42
Marital Status
  Not Married                75.4                  48
  Married                    24.6                  52
Education (%)
  8-11th grade               29.4                  18
  high school                57.4                  70
  >high school               13.2                  12
Occupation (%)
  Working                    66.7                  73.5
  Homemaker/Student          24.6                  16.3
  Unemployed                  8.7                  10.1
Insurance Sponsorship(%)
  Catastrophic               36                    57
  Non-Catastrophic           64                    43

* Sample 1: Participants
** Sample 2 : Non-participants

Regression Model for Restrictiveness of Living

Arrangements at One Year Post-Injury

Variables                 Coefficient                p

Marital Status (F)            .33                  .004
Education                     .18                  .09
Injury Level                 -.04                  .65
Program Participation         .15                  .16

R2 = .20
Standard Error of Estimate: .47

Regression Model for Psychological Distress at One Year

Post-Injury

Variables                      Coefficient               p

BSI                                  .8                 .001
Completeness of SCI Injury         -5.9                 .02
Restrictiveness of Living (F)      -3.2                 .16
Household Income (F)                 .2                 .76
Insurance Sponsorship              -6.1                 .01
Marital Status (F)                   .9                 .79
Natural Log of Age                 -6.9                 .13
Employment Status                   7.2                 .01
Program Participation               5.3                 .05

[R.sup.2] : .63
Standard Error of Estimate: 7.55

Note: (F) refers to measurement at year-one follow-up.
Other measures were taken during
hospitalization.

References

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