Clinically Based Research: Focus on Caregivers for Those with Spinal Cord Injuries & Dysfunction
Briana Bowen, MSW Student, Ellen Cloyed, LISW
Boschen, K. (2005). The impact of being a support provider to a person living in the community with a spinal cord injury. Rehabilitation Psychology, 50(4), 397-407.
Quantitative data was collected from a convenience sample of 100 self-selected spinal cord injury patients and their support providers (informal caregivers) in an interview-completed questionnaire, while qualitative data was obtained from a subsample of focus groups, including 46 participants that were self-selected. A comparison analysis indicated that the focus group participants were demographically comparable to the group of the 100 questionnaire respondents.
Results of the qualitative study indicated that integration into community was daunting, especially through the beginning of the transition. Participants stated that they were able to adapt gradually as time passed, but they were dissatisfied dealing with the service delivery system, asserting that there were not enough programs or assistance for support providers. Perhaps the number one concern was the struggle to gain some control and choice in their lives. The author believes that outpatient programs need to be enhanced with provisions for support providers, as much of the care SCI patients receive is not in medical facilities but in less informal environments. Indeed, many of the support providers did not feel a part of the rehabilitation process extended to the SCI patient.
There were several commonalities between the quantitative and qualitative studies including: the need for support from family members of the support provider, the loss of control that many support provider’s experience, momentous life changes facing the support providers after SCI onset, lack of help from rehabilitation programs, and the importance of finding activities outside of the home to maintain well-being and deter caregiver burnout.
Kleiboer, A. et al. (2006). Daily negative interactions and mood among patients and partners dealing with multiple sclerosis (MS): The moderating effects of emotional support. Social Science & Medicine, doi:10.1016/jsocscimed.2006.07.016.
This article discusses a research study conducted by the authors to observe the relationship between daily negative replies from the partner and end-of-day positive and negative mood in patients with multiple sclerosis (MS) and their partners. Furthermore, the authors examined whether these relations were moderated through daily emotional support from the partner. Computer diary entries of sixty-one MS patients and their partners from the neurology department in a hospital in the Netherlands were analyzed for 14 days.
Negative partner interactions were operationalized as critical, avoidant, or demanding. Even well-intended support from the partner may often be perceived negatively by the patient, such as over-protectiveness, and/or minimizing or maximizing the consequences of the illness. The authors defined emotional support as the “expression of love and care by communicating affection, value, and interest” (p. 3).
Multi-regression modeling was implemented to determine the association between daily negative interactions and emotional support on end-of-day positive or negative moods of the patient and his or her partner. Not surprisingly, individuals who described obtaining negative responses from their partners reported more daily hassles overall. End-of-day positive mood of both the patient and the partner were not related to the receiving of negative responses. Respondents did, however, report better end-of-day mood when they were given more emotional support. The authors recommend future research to examine how daily negative responses affect long term well-being as opposed to the short term well-being researched in this article.
Robinson-Whelen, S. & Rintala, D. Informal care providers for veterans with SCI: Who are they and how are they doing? Journal of Rehabilitation Research and Development, 40(6), 511-516.
A study of 348 veterans with spinal cord injury at the Houston Department of Veterans Affairs was conducted to assess those who rely on informal family caregiving, to describe the attributes of primary caregivers, to determine the veteran’s opinion of the stability of this caregiving for the future, and to explore network instability.
Twenty-two percent of the respondents stated that they were receiving unpaid assistance only, with an average of 12 hours of care in a day. Fifty-nine percent of these unpaid primary caregivers were a spouse or partner. The mean age of the caregivers was 53; most were women. Ten percent of the caregivers were over the age of 70. Nearly a third of those surveyed rated their caregiver’s overall health as only fair or poor and over one fourth of the participants reported that their caregiver would be able to provide the same amount of care in 5 years. In addition, more than half of the participants with an informal caregiver believed that they would not be able to find someone willing and able to assist them if their primary caregiver were unavailable.
Conclusion
All of the articles illustrate that caring for someone can often be overwhelming; it can be physically demanding, emotionally draining, and cause stress and conflict when combined with other major responsibilities. Those with spinal cord injuries and dysfunctions experience greater needs for care than many patients in other areas of the hospital, both from professionals and, more importantly, informal caregivers. Informing caregivers about the critical need for self-care is a useful tool in facilitating community living. Although there has been much research involving medical advances and physical health problems of those with spinal cord injuries, more research needs to be done on the people that care for them.
Briana Bowen is an MSW student intern in the SCI/D clinic at the Iowa City, IA VAMC. Ellen Cloyed, her supervisor, is a Spinal Cord Injury Coordinator and Social Worker and member of AASCIPSW’s Clinical Practice Committee.