XIII. Psychological and Psychosocial Disorders

 

[265] REHABILITATION EFFECTS OF PAY, ACTIVITY, AND SUPPORT INTENSITY ON SCHIZOPHRENIA

Morris Bell, PhD
West Haven VA Medical, West Haven, CT 06516

Sponsor: Department of Veterans Affairs, VA Rehabilitation Research and Development Service, Washington, DC 20420
(Project #D828-2RA)

PURPOSE--This research investigates the benefits of productive activity in the rehabilitation of patients with schizophrenia. Key questions are: 1) does pay increase participation in work activity and lead to higher rates of work placement in the community, 2) do higher intensity services yield better clinical outcomes than standard services, 3) is greater productivity associated with better clinical outcomes, and 4) is performance on psychological and neuropsychological measures a useful predictor of rehabilitation outcomes.

METHODOLOGY--One hundred and twenty patients with DSM III-R confirmed diagnoses of schizophrenia and schizoaffective disorder are being recruited from the general psychiatric service and stratified by prior work function. Subjects are randomly assigned to one of two levels of pay ($3.40 hour up to 20 hours weekly or no remuneration) and one of two levels of support (standard or high). High support subjects have access to a job coach, attend weekly group where vocational issues are addressed, and are provided biweekly work performance feedback. All subjects are offered 6 month work placements. Research staff perform biweekly evaluations of job performance using the Work Behavior Inventory (WBI), symptom levels using the Positive and Negative Syndrome Scale (PANSS), and quality of life (QOL). Subjects are evaluated at baseline, 5 month, 1 year and follow-up on demographic, neuro-behavioral, and productivity variables.

PROGRESS--Since January 1995, a new staff has been hired, measurement instruments gathered, staff trained on the instruments, physical space procured, and procedures created for the program.

  We have had 76 subjects (63 percent) complete intake procedures and enter the study. At this rate, we expect to recruit the planned 120 subjects on schedule. Thirty-nine subjects have been assigned to the pay, and 37 to the no pay condition; 38 subjects have been assigned to the standard support, and 38 to the high support condition. Of the 76 subjects who have completed intake procedures, 57 have elected to continue to participate following randomization. As a group, these subjects have worked 11,086.75 hours. We have performed 381 WBIs on them.

  We have conducted 80 weekly high support meetings, with excellent (85 percent) attendance, and there has been surprisingly lively participation on the part of even the most withdrawn and symptomatic subjects. Our 1,008 weekly assessments include 422 PANSS interviews, 220 QOL interviews, 210 group questionnaires, and 156 Job Satisfaction Inventories.

  Follow-up data are being gathered: 48 of 57 subjects (86 percent) have completed the 5-month follow-up procedure; of the rest, 2 have died, 4 have moved out of state, and 3 have refused. Thirty-three of 41 subjects (81 percent) have completed the 1-year follow-up battery.

PRELIMINARY RESULTS--Subjects in the high support condition work approximately 20 percent more than those in the standard condition, and all participants in the pay condition had at least 1 week of work, while only 54 percent of the no pay participants worked at least 1 week. Other issues have been more fully addressed using data from the current project, including validation study verifying the psychometric properties of the WBI and several investigations into affect recognition in schizophrenia. These last indicate: a) affect recognition is more difficult for schizophrenia samples than for substance abuse or normal samples, b) subjects with schizophrenia are less accurate at labeling negative vs positive affects, c) affect recognition deficits in schizophrenia are related to specific cognitive deficits, but not measures of global cognitive impairment.

RECENT PUBLICATIONS FROM THIS RESEARCH

 

[266] LONGITUDINAL ANALYSIS OF WELL-BEING IN PERSON WITH SPINAL CORD INJURY AND THEIR CAREGIVERS

J.S. Richards, PhD
University of Alabama at Birmingham, Spain Rehabilitation Center, Birmingham, AL 35233; email: richards@sun.rehabm.uab.edu

Sponsor: National Institute on Disability and Rehabilitation Research, U.S. Department of Education, Washington, DC 20202-2646

PURPOSE--Much of the research in spinal cord injury (SCI) has been focused on its acute medical aspects, with relatively little emphasis being placed on follow-up concerns, particularly quality of life issues. Recent work has suggested that there is a strong relationship between both physical health and emotional well-being of the person with SCI and the existence of an effective social support system. There is very little information, however, on the impact of care demands on the caregiver who also most typically is the major source of social support. The purpose of this project is to investigate on a longitudinal basis, the relationship between the physical and emotional care needs of the person with SCI and the physical and emotional health of the caregiver at several intervals postinjury.

  Objectives for this project include: 1) examination of the relationship between factors of well-being in persons with SCI and their caregivers, measured at preselected times postinjury; 2) determination of the association between physical and psychosocial characteristics of the person with SCI and feelings-of-burden variables in caregiver(s) at preselected times postinjury; 3) determination of the interrelationships between feelings of well-being of the person with SCI and his caregiver(s) in different cohorts over time; and 4) determination of the interrelationships between physical and psychosocial characteristics of the person with SCI and the feeling of burden in the caregiver over time.

METHODOLOGY--This is a longitudinal study consisting of four waves of data. A sample size of 100 SCI/caregiver pairs has been targeted. Individuals who identify themselves as most likely to be the primary caregiver are approached regarding participation in the study. The caregivers are administered four structured interviews: one in-person during the rehabilitation phase prior to discharge, and three by mail at 1 month, 6 months, and 1 year postdischarge. The predischarge interview serves as a baseline of caregiver mental and physical health, as well as an indicator of "anticipated" burden of care. To date, 91 caregivers have been enrolled in the project and 50 of them have completed all four phases.

PRELIMINARY RESULTS--88 percent of the caregiving sample is female, 66 percent have a high school education or better, and 47 percent were employed outside the home at the time of injury. With regard to relationship to the person with SCI, spouses comprise 32 percent, mothers 29 percent, and brothers 12 percent. Of the persons with SCI, 78 percent are male and 57 percent have a high school education or greater. Fifty-two percent of the persons with SCI have a cervical injury, while the remaining 48 percent have paraplegia.

  Preliminary analysis of data reveals the caregivers are experiencing increasing negative affect secondary to caregiving over the first year postdischarge. Decreasing instrumental support is also apparent over the first year postdischarge.

FUTURE PLANS--Subjects will continue to be enrolled through August 1996 with follow-up completed by the end of August 1997. Preliminary analysis will be descriptive and correlational.

  Longitudinal/causal analyses will not be able to be carried out until the project is completed.

 

[267] SEXUALITY ISSUES AMONG WOMEN WITH PHYSICAL DISABILITIES

Margaret A. Nosek, PhD; Diana Rintala, PhD; Mary Ellen Young, PhD; Carol A. Howland, MPH; Catherine Clubb Foley, PhD; C. Don Rossi, MS; Gail Chanpong, MS; Jama L. Bennett, MEd
The Center for Research on Women with Disabilities, The Department of Physical Medicine and Rehabilitation, and The Institute for Rehabilitation and Research, Baylor College of Medicine, Houston, TX 77046

Sponsor: National Institutes of Health, National Center for Medical Rehabilitation Research, Bethesda, MD 20892

PURPOSE--Research has been conducted on the physiological aspects of sexuality in women with physical disabilities; however, little has been done to examine the psychosocial influence that physical disability has on the development of intimate relationships and the abilities of women with various physical disabilities to pursue behaviors typically taken for granted by women without disabilities, including dating, physical intimacy, marriage, and parenting.

  This project is designed to examine three primary research hypotheses:

  1. There are significant differences in sociosexual behaviors of women with physical disabilities as compared to women without disabilities.
  2. The sexual functioning of women with disabilities is significantly related to age at onset of disability.
  3. Psychological factors (including perceived control, self-esteem, and prior sexual exploitation) explain more of the variance in the sexual functioning of women with physical disabilities than do disability factors, social factors, or environmental factors.

PROGRESS--The first phase of this research project was a qualitative study using a semistructured interview format with 31 women having physical disabilities. The 2-hour, in-home interviews were conducted by three project staff who are also women with disabilities. Interviews were transcribed, analyzed in terms of wellness, and used to generate the 300-item questionnaire pilot-tested on 60 women with disabilities and 60 women without. Their data were then used to further refine the questionnaire, which was sent to 1,200 women with disabilities and 1200 women without. Questionnaires were received from 950 women.

RESULTS--During the course of this study, several problems with reproductive health surfaced with unexpected strength. These problems include 1) lack of physical access to physicians' offices and equipment; 2) gaps in the knowledge of physicians and other health professionals about how disabilities affect reproductive health care needs; 3) assumptions by health care professionals that women with disabilities do not need reproductive health care; 4) deficits in knowledge and faulty beliefs of women with disabilities about the functioning of their bodies and their need for reproductive health care services; and 5) problems inherent in health care service systems. In our national survey, we found that women with disabilities face certain unique problems in sexual response, pregnancy, delivery, and the detection of sexually transmitted diseases, breast cancer, and cervical cancer. Data analysis has been completed in the following areas: sexual functioning, sense of self, body image, dating, marriage, secondary conditions, health care utilization, access to reproductive health care, and health maintenance behaviors. An executive summary and final reports are being developed and documentation is being prepared.

  Significantly more women with disabilities reported having chronic urinary tract infections, osteoporosis, major depression, hypertension, restrictive lung disorders, inflammatory bowel disorders, and heart disease than the nonimpaired comparison group. Women with physical disabilities reported having sexually transmitted diseases at about the same rate, had a higher rate of hysterectomy, and were significantly less likely to receive regular pelvic exams. Some women with physical disabilities lack basic knowledge about their reproductive health, and for 60 percent of them, health insurance coverage was inadequate to cover necessary medical services, resulting in the rapid exacerbation of serious health problems when health care was delayed or unavailable and often requiring emergency treatment. Many reported sexual and emotional abuse in medical facilities, particularly during childhood. Of the 45 women reporting abuse by health care providers, 22 listed emotional abuse, 9 physical abuse, and 25 sexual abuse.

  Some medical facilities operated under policies that exclude women with physical disabilities from receiving services. Some prohibited staff from lifting patients onto inaccessible exam tables. Some women covered by managed care plans experienced increased health problems when not allowed to access specialists for health conditions related to their disability. More than half of women with spinal cord injury (SCI) reported that the hospital could not accommodate their disability during childbirth, and 23 percent reported that available mammography equipment could not be positioned for them. Twenty-nine percent of women with disabilities overall (and 33 percent of those with SCI) reported that a physician had refused to see them for reproductive health care. Thirty-eight percent reported that the physician does not speak directly to them if someone else is accompanying them. Thirty-seven percent believed that their physicians were not well-informed about the effect of their disability on reproductive health, and 30 percent believed that they had been given inaccurate information about birth control by their physicians. These women also reported having less control over dating experiences, more constraints on attracting dating partners, more physical barriers to dating, and more social barriers to dating than women without disabilities. The two groups of women reported similar amounts of communication problems and saw themselves as equally approachable for dates.

FUTURE PLANS--Data from the survey will continue to be analyzed and disseminated. The results of this study will be used in developing and modifying educational and counseling programs for assisting women with physical disabilities in pursuing a full range of life options.

RECENT PUBLICATIONS FROM THIS RESEARCH

 

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Last revised Wed 05/26/1999