SPINALCORD: Caregivers of Persons with Spinal Cord Injury: A Longitudinal Investigation

RESEARCH UPDATE Newsletter
September, 1996

Caregivers of Persons with Spinal Cord Injury: A Longitudinal Investigation

by J. Scott Richards, PhD and Richard M Shewchuk, PhD

While recent experimental evidence provides new encouragement that spinal cord injury may not always be permanent, for the immediate future it is. Persons with spinal cord injury are surviving for many years, and at increasingly higher neurological levels. Sixty percent of these individuals are on Medicaid or Medicare at 10 years postinjury. Given current healthcare trends, responsibility for the physical care requirements of these individuals is and will continue to increasingly be placed on unpaid caregivers, chiefly family and friends.

During initial rehabilitation, the major focus of rehabilitation staff's time and energy is on the patient. Caregivers are often the forgotten half of the rehabilitation process. This is increasingly true given shorter and shorter lengths of stay that have been occurring over time.

However, we are well aware that persons who are caregivers bear an important and often a substantial burden both emotionally and physically post-discharge. There is extremely limited information about the impact of caregiving for persons with spinal cord injury.

The purpose of this investigation is to examine the impact of caregiving over the first year postinjury. The underlying assumption is that not only is a study of that process important in its own right, but the well being of the caregiver is likely directly tied to the well being of the person with spinal cord injury.

There is also very little known about how the physical care burden may change over time. It is possible that in some cases physical care requirements may increase; for example, the person aging with spinal cord injury, or those who put on excess weight or develop secondary complications with subsequent prolonged bed rest, multiple trips for medical care, wound changes, etc. The physical burden in some cases may decrease over time; for example for those with incomplete injuries with subsequent neurologic recovery, and/or improvements in strength and skill over time. Finally, the physical care burden may be stable over time; for example for persons with high tetraplegic injuries.

Very little is known about the emotional care burden for caregivers of persons with SCI. What we do know is that rehabilitation lengths of stay are increasingly short, the coping/adjustment process is often prolonged, and that therefore, patients and their families are likely only beginning to comprehend what has happened to them at the time of discharge. It is likely that the bulk of emotional care and support, therefore, will be the responsibility of the caregiver.

Background Literature

The well being of persons with spinal cord injury has been demonstrated to be related to adequate social support (Decker & Schultz, 1985). What then accounts for the well being of the caregiver? Decker, Schultz & Wood (1989) studied 67 caregivers of community dwelling persons with SCI. They found that increased time in activities of daily living was associated with increased feelings of burden, and that social support and perceived control were important buffers. Cushman (1988) studied 17 caregivers of persons with SCI over the first year postdischarge. Fifty percent of these individuals reported an increased burden after six months with males reporting an increased burden more frequently than females. Statistically significant changes over time were not noted because of significant variability amongst individul respondents.

Limitations of these two studies include the fact that the Decker, et al. study was cross sectional and the Cushman study had a small sample size with limited measures. However both were important in illustrating substantial burden and distress in the caregivers studied.

Study Goals and Design

Goals for this project include:

The assessment of the longitudinal impact of caregiving in terms of physical health, emotional health, buffering factors, impact of caregiver health on the health of the person with SCI.
Ultimate development of an at risk model.
Ultimate development of targeted interventions

Methods

The primary caregiver was identified and solicited for participation. A questionnaire was developed and administered in-hospital, one month, six months, and one year postinjury (Figure 1). A list of measures utilized is available from the author on request. While this study is still in the process of being completed; preliminary data will be presented here. The focus will be on analysis of trends at Time 2 and Time 3 (one month and six months post discharge) since we were interested, for purposes of this paper, in examining changes in physical care requirements over time.

Preliminary Results

The characteristics of the 62 caregivers utilized for this analysis are presented in Table 1.

**Table 1.**
Caregive Characteristics
Average Age	40.5 years
Education (average # yrs)	12.3 years
Gender	88% female
Marital Status	67% married
Occupational Status	53% not employed (at start of project)
Relationship to person with SCI
Wife	32%
Mother	29%
Brother	12%
Other	27%

It is perhaps not surprising that 88% of the primary caregivers are female, predominately wives or mothers.

Patient characteristics are presented in Table 2. The demographics of this sample are similar to those seen at this Center over time. Note the fact that 62% of these patients were unemployed at the time of injury.
Table 2.
Patient Characteristics
Average Age 33.5 years

Education (average # yrs) 11.6 years

Gender 78% male

Race 34% African American

Occupational Status 62% not employed
(at start of project)

Group outcomes are presented in Table 3.

Table 3.
Group Outcomes
Test Time 2 Time 3

CES-D 19.5 (11.9) 18.6 (12.7)

PANAS-positive 31.8 (7.3) 29.4* (8.1)

PILL 14.0 (10.3) 14.3 (10.1)

Anxiety(s) 45.5 (12.8) 44.9 (14.0)

*p=<.01>
The CES-D is a measure of depression; the PANAS, a measure of positive affect, the PILL, a measure of physical symptoms which are known to increase with stress, and the Spielberger State Anxiety Scale. Using a cutoff of 17, it is important to note that the sample as a whole falls within the clinically depressed range on the CES-D. While this cutoff does not necessarily directly translate to DSM-4 criteria for major depression, it is highly likely that a number of caregivers in this sample at both timepoints would meet criteria for a recurrent major depressive disorder. Positive affect for this group as a whole is diminished and in fact goes down between the two time periods significantly (normative average = 35). Physical symptoms remain constant over time as does anxiety which is not particularly elevated in this group.

Caregivers were asked to estimate the amount of time spent daily in caregiving tasks as well as all other caregiving tasks. This is obviously a self-report measure and there is no way of verifying the extent to which these estimates are accurate.

Table 4.
Caregiver estimated hours
of caregiving daily (n=58)
Tasks Time 2 Time 3

SCI specific 7.1 (4.8) 5.4* (4.2)

All responsibilities combined 13.2 (9.5) 10.3**(9.0)

p*<.01; **p<.05>

As noted in Table 4, caregivers report spending 7.1 hours per day on spinal cord injury specific caregiving tasks one month postdischarge and that is reduced to 5.4 hours six months post discharge. Caregivers also report spending 13.1 hours on all caregiving responsibilities combined at one month post discharge; this number is reduced to 10.3 hours six months port discharge. Therefore, while there is a significant reduction in caregiving responsibilities over time, caregivers are still spending very significant amounts of time.

In terms of help provided, Table 5 reveals the amount of time provided to caregivers in household chores, attendant care and ADL help.

Table 5.
Hours daily help provided
Tasks Time 2 Time 3

Household chores 1.3 (1.7) 1.5 (3.7)

Attendant care 1.2 (3.4)) .85 (1.6)

ADL help 2.7 (4.2) .85 (1.6)

TOTAL 5.2 hrs 3.1 hrs
*p<.01

Note that the amount of time donated for household chores remains the same over time, and in fact may increase slightly. Attendant care help diminishes substantially over time and the amount of time help provided by others for SCI specific caregiving tasks is reduced by greater than 50%.

In Table 6 caregiver outcomes are presented as a function of paraplegia/tetraplegia split. While there were no statistically significant changes across time for either group, the trend was for diminished distress in caregivers of persons with paraplegia over time and if anything, increased distress for caregivers caring for persons with tetraplegia over time.
Table 6.
Outcomes of caregivers
Time 2 Time 3

Paraplegia

CES-D 18.4 15.5

PILL 20.4 21

PANAS-positive 31.8 32.1

Anxiety (s) 45.5 42.8

Tetraplegia

CES-D 20.4 21

PILL 12.4 14.1

PANAS-positive 28.9 27.3

Anxiety (s) 45.8 46.2

Caregivers of persons with tetraplegia also appear more distressed than caregivers of persons with paraplegia at both times.

Discussion

These are preliminary results; we are in the process of completing all four waves of data collection and will be able to examine trends in depth over time. We will be examining mediating and moderating factors such as perceived social support and role strain as these might buffer or diminish the impact of caregiving on the caregiver. One of the things we are finding is very substantial inter-individual differences in outcomes. The result is that the standard deviations around any of the mean values we calculate are high which makes statistically significant results difficult to achieve. We plan to explore other statistical measures to understand more fully these individual differences and in particular whether or not characteristic "career trajectories" exist. Our ultimate goal will be to relate the development of preventable secondary complications, such as pressure ulcers, to the physical and mental health status of the caregiver. Given that we have longitudinal data, we can do this in a lagged fashion. If we are able to link the physical well being of the caregiver to health outcomes of the person with SCI, there will be obvious policy implications for these findings and therefore a stronger argument for increased provision of home care services.

References

DeckerSD, Schulz R. Correlates of life satisfaction and depression in middle-aged persons. Am J Occup Ther 1985;39:740-745.
Decker SD, Schultz R & Wood D. Determinants of well-being in primary caregivers of spinal cord injured persons. RehabNursing 1989; 14(1):6-8.
Cushman L. Caregivers reportee feelings of burden: a longitudinal study (abstract). Arch Phys Med & Rehab 1988; 69:759.

About the Authors:
J Scott Richards, PhD in Clinical Psychology, is a Professor, Director of Psychology, and Director of Research for the Department of Physical Medicine & Rehabilitation at the University of Alabama at Birmingham, Spain Rehabilitation Center. He serves as a principal investigator in research projects for the Rehabilitation Research and Training Center in Secondary Complications in SCI and the SCI Model Systems of Care. His main areas of research are pain and caregivers.

Richard Shewchuk, Ph.D. , is Director of Gerontology, School of Health Related Professions and Associate Professor, Divison of Health Services Administration at the University of Alabama at Birmingham.

Project Director: Amie B Jackson, MD
Edited by: Linda Lindsey, MEd
Research Update is published annually by: Medical RRTC in Secondary Complications in SCI
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The University of Alabama at Birmingham provides equal opportunity in education and employment. This publication is supported in part by a grant (#H133B80012) from the National Institute on Disability and Rehabilitation Research, Dept of Education, Washington, D.C. 20202. Opinions expressed in this document are not necessarily those of the granting agency.