Common Symptoms Experience, Symptoms Management, and Quality of Life of Nepalese People With Spinal Cord Injury and Family Caregivers

Abstract

The descriptive study was aimed to describe common symptoms experience, symptoms management, and the level of the quality of life (QoL) among people with spinal cord injury (SCI) and family caregivers (FCs) in Nepal. A total number of 123 people with SCI and 98 FCs were randomly recruited from the 13 districts of Province No. 3, Nepal. A set of questionnaires for people with SCI consisted of (1) Demographics, Health and Illness, and Environment Data Form of People with Spinal Cord Injury, (2) International Spinal Cord Injury Pain Basic Data Set version 2.0 (ISCIPBDS-2), (3) Penn Spasm Frequency Scale (PSFS), (4) Patient Health Questionnaire (PHQ-9), (5) Symptoms Management Questionnaire of People with Spinal Cord Injury (SMQ-SCI), and (6) Spinal Cord Injury Quality of Life-23 (SCI QL-23). The instruments for data collection of the FCs were: (1) Demographics, Health and Illness, and Environment Data Form of Family Caregivers, (2) Pain Experience Questionnaire (PEQ), (3) Zarit Burden Interview-short Form (ZBI-12), (4) Patient Health Questionnaire (PHQ-9), (5) Symptoms Management Questionnaire of Family Caregivers (SMQ-FCs), and (6) World Health Organization Quality of Life (WHOQOL-BREF). The questionnaires were validated by five experts (S-CVI=1.0). For the total number of samples of SCI, Cronbach's alphas were .73 for the ISCIPBDS-2, .89 for the PSFS, .84 for the PHQ-9, and .78 for the SCI QL-23. For the total number of FCs, Cronbach's alphas were .78 for the PEQ, .85 for the ZBI-12, .79 for the PHQ-9 of FCs, and .86 for the WHOQOL-BREF. Descriptive statistics were used to analyze the data of study variables. Simple content analysis was used to analyze the open-end questions of symptoms management. The findings showed the following; People with SCI had common symptoms experiences that were pain (100%), spasticity (59.3%), and depressive mood (84.5%). The worst first three most common pain locations were back, buttocks/hip, and upper leg/thigh. Pain severity was at a moderate level (M = 3.5, SD = 0.9) and pain frequency was at a high level (M = 6.0, SD = 1.6). The frequency and severity of spasticity were at moderate levels (M = 2.2, SD = 0.8, M = 2.1, SD = 0.5, respectively). Depressive mood was at a moderate level (M = 11.0, SD = 4.2). The participants used non-pharmacological management more than pharmacological management to reduce these symptoms based on beliefs, preferences, convenience, and community resources. The non- pharmacological management methods commonly used by SCI people to relieve pain were tolerance followed by distraction and massage; to decrease spasticity exercise was used, followed by positioning, and eating animal nutrients (traditional usage); and to reduce depressive mood distraction was used, followed by sharing feelings, and spiritual practices. Half of the people with SCI sometimes used medications such as anticonvulsants and non-opiate drugs to relieve pain and they used muscle relaxants to reduce spasticity. The effectiveness of using non-pharmacological management was found to be slightly better in controlling the symptoms, whereas the levels in the use of medications were found to be slightly to much better in controlling symptoms. Moreover, the three domains of QoL, which included problems (perceived loss of independence and other issues relating to injury) (M = 56.9, SD = 21.5); functioning (physical and social limitations) (M = 52.2, SD = 30.7); and mood (distress and depressive feelings) (M=45.6, SD = 16.9), were found at moderate levels. The FCs had common symptoms experience that were burden (100%), LBP (71.4%), and depressive mood (54.1%). FCs had a moderate level of LBP (M= 4.1, SD = 1.7) with a frequency of more than two times a week. Overall, the severity of burden was at a moderate level (M = 19.2, SD = 8.0), and severity of depressive mood was at a mild level (M = 8.7, SD = 2.9). The types of management for common symptoms used by FCs were non-pharmacological methods with similar reasons as the persons with SCI as mentioned above. They used tolerance followed by massage, and exercises to reduce LBP; they used spiritual practice, distraction, and sharing of feelings to lessen burden; and they used spiritual practice, distraction, and crying to decrease depressive mood. The FCs evaluated the effectiveness of these management methods at slightly better to much better levels of relieving symptoms. In using pain medications, one-fourth of the FCs used NSAIDs to reduce LBP whenever, and most of them reported feeling much better. The four domains of the QoL of FCs were at moderate levels. The scores of the physical domain and social relationship domain were at 56, whereas the psychological domain and environment domain scores were at 50. The findings of this study are beneficial for the health professionals in being aware of the common symptoms experienced and in providing continuing care by developing symptom management strategies for people with SCI and FCs while living in the community in order to improve QoL related to the context of Nepal.