SPINALCORD: Problem Solving Interventions for Caregivers and Persons with Spinal Cord Injury

This article is from the Pushin' On Newsletter, Vol 19[1], Winter, 2001.

by Phil Klebine, MA [pdf format] [Evaluate]

This is an ongoing study of the long-term effects of the relationship between persons with spinal cord injury (SCI) and family members who serve as their caregivers. The goal of this study is to reach five broad objectives:

To gain a better understanding of the physical and emotional relations between care needs of persons with SCI living at home and the physical and emotional health of their caregivers over a one-year period.
To determine how attitudes of persons with SCI and their caregivers systematically relate to health and quality of life outcomes over time.
To gain a better understanding of how persons with SCI living at home and their caregivers see a variety of problems that they are likely to encounter over the course of a year.
To determine the usefulness and the cost effectiveness of videoconferencing as an in-home therapy treatment.
To gain information that can be used to identify individuals at risk for physical and emotional secondary complications of SCI.

Methodology

Participants age 18 and older are being recruited within the Birmingham, Alabama metropolitan area. Individuals having an SCI for at least six months can participate if they also have a family caregiver living with them.

Those selected to participate are visited in their home before they begin in the study. Project staff members review each participant's personal history and physical health. Both the person with SCI and their caregiver are tested on current psychosocial functioning and social problem solving abilities.They are given the Mini Mental Status Examination to detect possible mental difficulties. Anyone lacking the ability to understand the questions being asked and those with signs of significant impairment are excluded from further participation. Finally, participants are also asked to identify important problems by doing an index card-sorting task (Q-sort). These cards have problems written on them, and participants are instructed to stack the cards in any way and label each stack of sorted cards. A staff member records the individual problem statements comprising each sorted stack so that the information can be used later.

The selected participants are randomly placed in either an education-only control group or an intervention group. Those in the control group receive scheduled educational mailings of information regarding adjustment to SCI. The materials focus on self-care and services available in the general area. The control group is also asked to telephone the project coordinator for other information or advice.

Persons assigned to the intervention group are taught to use a videoconferencing device, which is provided free and installed in their home by the project staff. All family members are then coached within a problem-solving format to address the specific problems identified in the Q-sort obtained on the first home visit. The project coordinator schedules monthly appointments via videoconference to meet with the person with SCI and caregiver to review current progress and provide further problem-solving training.

The project coordinator revisits all participants after six months to complete a second assessment. The measures from the first assessment are repeated. Information is gathered from the participant’s self-report and subsequent contact with caseworkers and clinics (if needed). All participants are paid a small sum for their involvement at the first and final assessment.

Preliminary Data

A set of 25 participants has been enrolled in this ongoing study. Of the 25 caregivers, 23 are female and 2 are male. 7 are African-American caregivers and 18 Caucasian. The average age of the caregivers is 49, with a range from 20-81 years of age. Caregivers have an average of 12.3 years of education, with a range of 6-18 years. Most of the caregivers are wives, followed by mothers, grandparents, siblings, and others (husbands, fathers, daughters, friends). 12 caregivers are employed (10 full-time, 2 part-time) and 13 are not. A majority, 19, of the caregivers is married. 2 are not married, 2 divorced, and 2 widowed/separated.

As for persons with SCI, 18 are male and 7 female. 12 people have cervical injuries, 12 thoracic, and 1 lumbar injury. 15 injuries are complete with 10 incomplete. 7 persons are African-American and 18 Caucasian. The average age of persons with SCI is 40 with a range of 18-72 years of age. The average education is 12 years with a range of 3-18 years. 3 people with SCI currently have jobs (2 full-time, 1 part-time) and 22 are unemployed. 12 are married, 11 are not married, 1 separated, and 1 divorced.

Anticipated Research Results

Past research indicates that problem solving abilities of persons with SCI and caregivers are directly associated with the occurrence of preventable secondary complications in the patient (e.g., pressure sores, urinary tract infections). This is also true for depression and acceptance of injury as well as caregiver adjustment. Those participating in the intervention group are expected to have less depressive behaviors and fewer secondary complications than those persons and caregivers in an education-only control group. The use of videoconferencing is also expected to be a cost-effective tool for promoting psychosocial health services. Finally, this study is expected to provide insight into the nature of the relationship between caregivers and persons with SCI by examining the unique ways in which members of each group perceive and understand the problems they encounter.

Conclusion

Once completed, the information from this study may result in the development of useful intervention materials that can be used in identifying and treating persons living at home who are at risk for secondary complications. Through this intervention, this information may then help health care systems reduce costs while improving services.

This is an ongoing study being conducted br Dr. Timothy Elliott and Dr. Richard Shewchuk from the University of Alabama at Birmingham. The information found in this article may change. For information on participating in this study, call 205-934-3283 or email rtc@uab.edu.