The International Journal of Psychosocial Rehabilitation

Understanding Psycho-Social Issues in Persons with Spinal Cord Injury and Impact of Remedial Measures

Roop Singh, M.D. a

Rajesh Kumar Rohilla, M.D. a

Associate Professor

Ramchander Siwach, M.D. a
Professor& Head

Satyavir Singh Dhankar, M.D. a

Kiranpreet Kaur, DA, DNB b
Assistant Professor

(a) Department of Orthopaedic Surgery, Paraplegia & Rehabilitation 
 and (b) Anesthesiology and Critical Care;
 Pt. B.D. Sharma PGIMS, Rohtak-124001 (Haryana) INDIA

Singh R, Rohilla RK, Siwach R, Dhankar SS, & Kaur K (2012). Understanding Psycho-Social Issues in Persons with Spinal Cord
Injury and Impact of Remedial Measures
 International Journal of Psychosocial Rehabilitation. Vol 16(1) 95-100

Corresponding author:
    Dr. Roop Singh
     9-J/ 52, Medical Enclave
     PGIMS, Rohtak-124001
     Haryana, INDIA.
     E-mail :

Background:  Spinal cord injury (SCI) is a devastating event that has not only physical but also social and psychological ramifications for the injured person. These can adversely affect the psycho-social life of SCI persons.
Purpose: The present study aimed (a) to assess psycho-social problems of patients with SCI and (b) to evaluate the impact remedial measures.
Method:  Fifty persons with SCI were assessed for various psycho-social issues, remedial measures were taken to address them, and follow-up assessment was performed 6 months later to examine the impact of these over time.
Results: The affects of SCI on the areas like psychology, sexual functions, social adjustments, burden on family, partner relationships, and sleep disturbances are quiet evident. Various remedial measures taken to address these issues showed good results after six month follow-up.
Conclusions: Simple instructions and interventions are effective in decreasing psycho-social problems, and health professionals should use them in rehabilitation of persons with SCI.

Key words: Spinal cord injury; Psycho-social; Social adjustment; Autonomy; Mobility; Burden on family.

Spinal cord injury (SCI) affects all aspects of a patient’s life, including the physical, behavioral, psychological and social functioning (North, 1999). As life expectancy is steadily improving through modern spinal unit care, the increased survival in SCI patients is associated with secondary complications, which continue to pose management challenges (Devivo., et al, 1992; Kreuter., et al, 2005). These all, secondary disabilities are usually not fatal and they impair independent living and are costly to treat. With rehabilitation and good follow up life expectancy of SCI patients can approach to normal (Kreuter., et al, 2005).

Common neuropsychological deficits among SCI patients include poor attention span, limited initial learning ability, poor concentration ability, impaired memory function, and altered problem solving ability and these deficits may interfere with rehabilitation following SCI (Roth., et al, 1989). 20-25% patients experience an anxiety disorder and 30-40% develop a depressive disorder (Kennedy & Rogers, 2000). Post traumatic stress disorder (PTSD) is the development of characteristic symptoms following exposure to an extreme traumatic stressor. PTSD after SCI patients is observed in 10-40% patients (Kennedy & Duff, 2000). The person with SCI is at high risk for undergoing the “Four D Syndrome,” i.e. dependency, depression, drug addiction and if married - divorce. Two more “Ds” - debilitation and demanding can also be added to this list (Gill, 1999). Spinal cord injury affects both genital and sexual functioning (Siosteen., et al, 1990). 42% of males with SCI are not satisfied with their sex lives (Phleps., et al, 1983). 34% SCI patients are not satisfied with partner relationships (Franceschini., et al, 2003). Spinal cord injured patients are reported to have sleep disturbances like restless sleep, difficulty in initiating and maintaining sleep, snoring, often awaking in the early hours of the morning (Bonekat., et al, 1990).

The present study aimed to assess these psycho-social problems of patients with SCI, taking remedial measures to minimize these problems, and to evaluate the impact of these measures. This study is a part of a larger ongoing study investigating epidemiology, treatment, rehabilitation, adjustment, psychosocial, quality of life, and community reintegration outcomes.

Material and methods:
Fifty patients (36 males and 14 females) of SCI more than 6 months duration with or without persisting deficit, who presented at our, tertiary level health care institute, were included in the present study. The patients with SCI of less than 6-month duration or having pre-morbid and/co-morbid conditions such as severe psychiatric illness and traumatic brain injury were excluded from study. The mean age of the patients was 37.7 (range, 18-73) years. Patients presented at a mean of 3.7 years (range: 6 months to 20 years; SD± 4.34) after injury. The patients were given detailed information about the purpose of study and written consent was obtained from all the participants. First of all the complete history of patients was recorded to rule out any traumatic brain injury or severe psychiatric illness, then the complete general physical examination and neurological examination was done. The grade of neurological deficit in SCI was classified according to the ASIA Impairment scale (Maynard., et al, 1997).  Neurological deficit as per ASIA Impairment Scale were as follows: A in 12; B in 8; C in 10; D in 14 and E in 6 patients. Patients were interviewed and examined for various psychosocial issues. Social adjustment was measured as good, average, and poor. Burden on the family was measured as severe, moderate, mild, and nil. Mobility was defined as bed-ridden, restricted mobility or fully mobile. Autonomy was measured as full autonomy, routine active, and nil autonomy. Relationship was defined either cordial or uncordial.

After assessment of the psychosocial problems, following remedial measures were taken to cure or minimize these problems:
Psycho-neurogenic problems: Psychologist’s opinion was taken, counseling and medical treatment were given.

Sexual dysfunctions: partner counseling, privacy at night, proper positioning, emptying bladder prior to intercourse and medications in the form of sildenafil citrate (Viagra) were used in the affected patients.

Social adjustment: Regular psychologist’s counseling, minimizing barriers hindering with mobility both at home and work place, and optimizing the home environment.

Burden on family: The patients were advised various means of self dependence, vocational training and mobility (wheelchair and calipers).

Partner Relationships: Patients and partners were counseled for the reasons of uncordial relationship.

Sleep disturbances: We advised the patients not to sleep during the day and advised psychologist consultation for depression / sleep disturbances. 

Patients were re-evaluated after six months to see impact of these measures on psychosocial issues.
Statement of Ethics: "We certify that all applicable institutional and governmental regulations concerning the ethical use of human volunteers were followed during the course of this research."

Seven (14%) patients were having psycho neurogenic problems in the form of altered attention span, concentration, memory, learning abilities, problem solving abilities and visuo-spatial perception difficulties. Psychologist’s opinion, counseling and medical treatment were beneficial in 3(40%) of these affected patients.

Twenty (55.5%) patients were having normal erection functions. The ejaculation functions were normal or near normal in 14 (39.9%) out of 36 male patients. Erectile dysfunction in male SCI patients was observed in 16 patients (44.5%) and ejaculation dysfunction in 22 (60.1%) male patients. Four (24.9%) female patients were having sexual dysfunctions in the form of loss of libido and orgasms and never indulged in sexual activity after injuries. Improvement in the sexual functions was observed on 6 month follow up after use of remedial measures in the form of partner counseling, privacy at night and medications like sildenafil (Viagra).

The social adjustment was good in 29 patients, average in 10 and poor in 11 patients. Eleven (22%) patients were suffering from PTSD. Regular psychologist’s counseling and necessary medical treatment were given. Subsequent follow up showed a decrease in the PTSD in 6 patients and 5 patients did not respond. Seventeen (34%) patients had severe burden on the family, 5 had moderate and 15 had mild burden on the family. Thirteen patients did not have any impact of the injury on their family. We advised various means of self dependence and mobility as by wheelchair and calipers to the patients. Twenty (70%) patients benefited from these measures in subsequent follow ups. Sixteen (32%) patients were having uncordial relationship to their partners. Patients were counseled for the reasons of uncordial relationship and 10(62%) patients responded with improvement in relationship, 5(31%) patients did not show any improvement and 1(7%) showed deterioration.

Regarding occupation, 17 (34%) patients were able to do their job or work at home. Rest were bed ridden or could not do their work even with mild ambulation. Regarding mobility, 26 (52%) patients were not able to move and they were bed ridden and 3 had restricted mobility. 21 patients were fully mobile. Twenty one (42%) patients were having full autonomy. Others were having either no autonomy (26 patients) or were only able to do the routine work (3 patients). Twenty patients had sleep disturbances but majority were not using any drug treatment. Sixteen patients were benefited with counseling and/or by changing their sleep schedule.

Spinal cord injury is a devastating event that has not only physical but also social and psychological ramifications for the injured person. The psychosocial problems affecting SCI patients include sexual dysfunctions, problems of social adjustment, burden on family, strained partner relationships, and sleep disturbances. The frequent hospitalization, inability to return to pre-injury occupation, immobility and lack of autonomy can adversely affect the community reintegration and quality of life of SCI patients (Roth., et al, 1989; Kennedy & Rogers, 2000; Kennedy & Duff, 2000; Gill, 1999; Siosteen., et al, 1990; Phleps., et al, 1983; Franceschini., et al, 2003; Bonekat., et al, 1990). The present study was an attempt to understand these problems, taking remedial measures to minimize these problems and to observe the impact of these on psycho-social life of persons with SCI.

 In the present series 14% patients were suffering from psycho-neurogenic complications in the form of altered attention span, concentration, memory, learning ability, problem solving abilities and visuo-spatial perception difficulties. The prevalence of neuropsychological abnormality on comprehensive motor free neuro-psychological test battery ranged between 10% and 40% in a study by (Roth., et al, 1989). Mean performance levels of patients were significantly more impaired than those of control subjects (Roth., et al, 19890. Rehabilitation after SCI requires the ability to attend, to concentrate on, understand, process, retain, retrieve, integrate and utilize the information, which have major implications for the design and implementation of SCI rehabilitation programme. Accurate analysis of specific neuro-psychological deficits in individual patients provides the opportunity for modification of each patient’s treatment programme and directs the therapeutic approach.

In the present study, 55% of patients were having normal erection after SCI which is comparable to 5-75% in a study by Biering-Sorensen & Sonksen (2001). The normal ejaculation functions in 39.9% of SCI patients in the present study are also comparable to 0-55% in a study by Sonksen & Biering-Sorensen (1992). The rates of dysfunction in erection and ejaculation in the present study are comparatively on the lower side to our previous study in 86 males in year 2006 (Sharma., et al,2006). In the study by White et al (1992) 67% males with SCI had a physical relationship in the past 12 months. Most concerning areas of sexual activity for the respondents were not satisfying a partner, getting or giving a sexual disease, urinary accidents, and not getting enough personal satisfaction (White., et al, 1992). Phelps et al reported that 42% of males with SCI were not satisfied with their sex lives, 50% had a weak sense of sexual adequacy and 20% judged their sexual desire to be weak or very weak (Phleps., et al, 1983).

Orgasm in SCI patients was comparatively low (64.4%) as compared to able bodied subjects having 100% orgasm (Sipski., et al, 2006). Mean time of the orgasm was also less in able bodied person as compared to SCI patients (Sipski., et al, 2006). 75% of the female patients in the present study were having normal sexual functioning and were indulging in sexual activity, which is comparable to the 62-80% patients reported in other series (Ferreiro-Velasco., et al, 2005; Kreuter., et al, 2008). It was also comparable to our previous study, which reported that 72.5% had interest in sex, 65% indicated decrease in desire in sex and 30% had never indulged in sexual activities (Singh& Sharma, 2005).  Reasons for not wanting or not having the courage to be intimate and sexual were physical problems, low sexual desire, low self-esteem and feelings of being unattractive (Kreuter., et al, 2008). We agree with Ferreiro et al (2005) that variables such as age, neurological level, the ASIA grade, and the level of independence or the type of bladder did not influence the physical relationships. The paraplegic women were able to reach orgasm with more ease than tetraplegic women urinary leakage and difficulties with positioning were the most commonly problems during sexual intercourse. However, these can be solved by maintaining the position of that required minimum effort and emptying the bladder before intercourse and applying lubrications for the problems of dryness of the vagina. We observed that female patients claiming a drop in the libido and not indulging sexual activities related it to loss of sensitivity in the genital region and their prime focus on the injury and the depression.

From our previous experience and from the initial findings of the present study, we took measures to overcome these problems (Sharma., et al,2006; Singh& Sharma, 2005). Patients were counseled for that although, sexual intercourse is a part of sexual enjoyment but it is not only the one method. Patient and partners were advised to spend time together and use other methods of enjoyment like kissing, hugging etc. Attendants were advised to give them privacy. These interventions showed good results in subsequent follow-up. The present study showed that sexual adjustment after SCI was not solely explained by genital function and degree of physical impairment. General satisfaction with life, high self esteem and sexual behaviors characterized by mutual openness and experimentation would promote an active and satisfying sexual life. The present study also agreed with Siosteen et al that both general psychological and more specific sexual counseling would help to reduce fear, lack of confidence and self doubts concerning sexuality after injury which might have more negative influence on sexual adjustment than genital dysfunction itself (Siosteen., et al, 1990).

Twenty percent patients were having average social adjustment. These patients were having significant disability but were able to do their routine activities with the help of aids e.g. wheel chairs, orthotics etc. These patients were having adjustment difficulties when they have to go out of the home due to uneven streets, mud, non availability of ramps and lifts at public places. Twenty two percent patients were having poor social adjustment as they were mainly non-ambulatory. Patients were totally dependent on their caregivers and hospital staff. These patients were usually suffering from PTSD. This study was comparable to the study of Kennedy and Duff who reported that PTSD after SCI was about 10-40% (Kennedy & Duff, 2000). We should guide the caregivers, partners, family members and society to improve adjustment with SCI patients.

Sixteen patients (32%) were having uncordial relationship and 34 (68%) were having cordial relationship in the present study. The findings were not in agreement to the study of Franceschini et al who found that 63% patients told change in relationship as having detachment 32.9, more careful assessment of one’s friendship 13.4%, higher awareness of one’s feelings 12.2% and disruption of an important bond 6.1% etc. 89.9% were living with their families, 5.5% lived alone and 2.1% lived in institution. 48.6% were satisfied with their partners and 34.2% not satisfied (Franceschini., et al, 2003). This study was comparable to our previous studies (Sharma., et al,2006; Singh& Sharma, 2005). 42% of the patients reported that their partners were never satisfied with the sexual activity and 36% reported uncordial sexual relationship after SCI (Singh& Sharma, 2005). Majority of the women (80.6%) had cordial relationship with their partners and 64% of the women reported that their partners cooperated with them during sexual activity (Singh& Sharma, 2005). The present study was also comparable to the Kreuter (2000) study which showed that partner relationships seem to be affected by SCI, although not as much as is widely believed. Present study shows simple interventions directed towards factors impacting relationships can be quite useful in improvement of relationships as 62% of the patients having uncordial relations showed improvement in relationships at subsequent follow-ups.

In the present study 34% patients were having severe burden on the family. These patients were the sole earning person in the family or were the most responsible persons of that family. Ten percent patients were having moderate burden and 15 (30%) were having mild effects on the family. The persons having mild or none burden were usually having mild or no disability and that did not interrupt in the routine work of family. In the present study there was a male preponderance and their primary caregivers were mainly females (usually wives). Caregivers had to face the problems of immobility and physical dependence of the patient, financial burden of the treatment and problem with their routine activities as also reported by Unalan et al (2001). Present study emphasizes to make strategies of rehabilitation of SCI patients in a way to minimize the burden on the family and caregivers (Unalan., et al, 2001). Our strategies of early mobilization, self dependence and vocational training had good results in the long run.

Thirty four percent of patients could regain their working capability and only 42% patients were fully mobile & had full autonomy; while 6% were able to do routine activities independently. Sixty six percent had changed their jobs; full autonomy was in 42% of patients. The present study differs from Franceschini et al (2003) who reported that 35.6% had changed the job. 61% left the home on daily basis. Regarding autonomy only 35.6% could leave home only with assistance and average autonomy score was 6.5 out of 10 (Franceschini., et al, 2003). In the present study 20% of patients were having sleep disturbances as compared to normal persons. These were mainly patients having severe injuries as ASIA I and II grades. These patients were mainly bed ridden and having history of sleeping during the day time. A small group of patients 10% were using tranquilizers on and off at night. In this study we found that there was no significant difference between the total hours of sleep to the normal persons. The SCI individuals had greater difficulty in falling asleep, described more frequent awakenings, slept subjectively less well, were more often prescribed sleeping pills, slept more hours, took more and longer naps, and snored more (Biering-Sorensen & . Biering-Sorensen, 2001).  In particular, spasms, pain, paraesthesia, and troubles with voiding were claimed to be part of the sleep problems (Biering-Sorensen & . Biering-Sorensen, 2001).  

In conclusion, the present study highlights that the effects of SCI on the areas like psychology, sexual functions, social adjustments, burden on family, partner relationships, and sleep disturbances are quiet evident. Observations of this study show that simple instructions and interventions can help a SCI patient to decrease these complications for a better reintegration into the family and society. Accurate analysis of specific problems faced by these individuals provides an opportunity for modification of each patient treatment programs and directs the therapeutic approach; thus enhancing psychosocial life of patients with SCI. 



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