Views and attitudes towards sexual functioning in men living with spinal cord injury in Kerala, south India
Correspondence Address: Source of Support: None, Conflict of Interest: None DOI: 10.4103/0973-1075.150158
Source of Support: None, Conflict of Interest: None
Context: Sexual dysfunction is a major concern for Indian men living with a spinal cord injury. Few first-hand reports exist about the experience of living with an altered sense of sexual identity and the inability to express sexual concerns.
Keywords: Indian men, Qualitative research, Sexuality, Spinal cord injury, Views and attitudes
The physical impact of spinal cord injury is very visible in paraplegic patients; but the impact on psycho-socio-spiritual domains and sexuality is seldom appreciated by the medical system. Many men previously doing active physical labor and fulfilling family responsibilities before the spinal cord injury now must learn not just to cope with the significant physical changes associated with the injury but also with the problems associated with spinal cord injury.  These include neuropathic pain, spasticity, bowel, and bladder dysfunction, significant sexual dysfunction and diminished self-confidence.  In Kerala, South India, men who suffer spinal cord injury have often been involved in hard physical labor such as lifting heavy loads and in high construction sites, which are associated with a high risk of trauma with spinal cord injury. The most common cause of spinal injury in Kerala is fall from a coconut tree, which can be as high as 80 feet. Loss of sexual functioning is known to rank as a very high priority for these young and middle-aged men.  The highest ranked sexual concerns for men are known to include techniques to achieve sexual satisfaction, helping a spouse to cope with the limitations of sexual activity and the ability to have offspring. 
As in most of the developing world, specialized centers to provide rehabilitation and long-term care are practically non-existent in Kerala. Hence, patients with spinal cord injury with sustained paraplegia are cared for within the services of palliative care rather than specialized centers for spinal cord injury.  Most of these patients undergo conservative treatment.  Thirty percent of people are below poverty line due to economic impact of disease, treatment, and loss of income.  Hospital health care system in India primarily caters to the acutely ill patients, whereas chronically ill patients require ongoing sustainable care in the community.  Sepulveda et al. indicate that palliative care should be provided to any patient with a life-threatening illness from the time of diagnosis. Palliative care in Kerala covers a broad spectrum of chronic diseases because most patients' needs are unmet.  As Traue and Ross (2005)  suggest, palliative care should be provided to the needy regardless of the diagnosis, given that suffering faced by patients with cancer and non-cancer chronic illnesses is the same.
Although it is well researched that sexual functioning is a key focus for the majority of people living with spinal cord disabilities,  very little is documented on the actual views and attitudes of the men themselves. Few subjective reports exist from men suffering from disabilities following a spinal cord injury as to what it is like to live with an altered sense of sexual identity, a change in role and status, and a reduced capacity for sexual expression.
The purpose of this study was to explore qualitatively, the views and attitudes towards sexual functioning in males living with spinal cord injury in Kerala, South India.
While the importance of sexuality as a component of quality of life for patients with spinal cord injury is clear, little is known about the underlying process of what happens when men are faced with a sudden change in their sexual identity and about the effects this has on their spouse or partner . Married men in Kerala are expected (by society) to work hard and make major family decisions. But family roles change following spinal cord injury, and this affects income, male identity, and the capacity to have offspring.
As few empirical studies are available, there is a critical gap in current knowledge in understanding how to manage the sexual concerns of individuals with spinal cord injury. We hypothesized that a qualitative methodology may be an appropriate approach for understanding the subjective concerns around sexuality for men following a spinal cord injury.
Qualitative methods were used to study the views, attitudes, and underlying concerns of male patients suffering with paraplegia following a spinal cord injury. Narrative interviews were conducted with each participant according to I.E. Seidman's interview approach to phenomenological interviewing. , A phenomenological approach focuses on exploring how people make sense of their experience and bring that experience into conscious thought. 
Focused in-depth interviewing was used drawing on an open-ended question approach. Patton (2002)  and Seidman (2006)  in presenting a model for conducting phenomenological studies has described this as a combination of life history interviewing and open ended in-depth interviewing that draws on phenomenological assumptions. I. E. Seidman describes this model in terms of a three part interview model and states that "people's behavior becomes more meaningful and understandable when placed in the context of their lives".  This model focuses on three aspects of the participant's experience (1) life before the experience, (2) the participant's present experience, and (3) the meaning the participant gives to his current situation and the sense that is being made of it now. 
Patients with a diagnosis of spinal cord injury were recruited by a referral from the nursing and medical staff in the palliative care ward in a major teaching hospital in Trivandrum, Kerala.
A purposive sample of seven male participants was developed in order to permit a rich and in-depth understanding of the research questions  and to represent a variety of experiences associated with sexual functioning before and after the injury. Since the study topic has received sparse attention in the research literature and this study aimed to explore in depth the views and attitudes of males living with a spinal cord injury, a sample of seven participants was considered adequate for this study. The demographic details of the patients are given in the [Table 1].
The inclusion criteria for this study were Malayalam-speaking male adults between the ages of 18-60 years of age, referral by nursing or medical staff based on paraplegia following spinal cord injury and reported concerns regarding sexuality and sexual functioning. The inclusion criteria also included sufficient mental capacity to give informed consent, to relate their experiences of paraplegia in relation to sexual functioning, and sufficient physical resources to participate in a detailed narrative interview.
Interview topics were developed by SK, a palliative care physician with clinical expertise and 9 years of experience in caring for male patients with a spinal cord injury and sustained paraplegia. Thirteen topics were developed with potential probes for each topic. Additional probes were used in order to gain more information about the views and attitudes of each male participant, and to clarify that the person's story had been heard and understood correctly. At the end of each interview, each person was invited to speak about any issues that were not covered in the guideline topics.
The interview guideline questions developed for this study contained the words "sexual life," "sexual satisfaction," "sexual attitude," "sexual activities," and "sexual intercourse." Open-ended questions specifically beginning with "how" or "what" were used to allow for the participant's own views and experience to emerge from their stories . An explicit "closed' question about what could help with a better sexual life, which would elicit simply a yes or no answer, was only used if particular clarity was needed and this was usually kept for the end of the interview.
All the interviews were conducted in the Malayalam language and subsequently translated into English. The interviews were conducted with patients alone by SK in the participants' homes in Kerala, South India, where the participant himself felt comfortable in talking about sexual issues.
Given some participants had difficulty in talking about intimate and private sexual issues for any sustained length of time, field notes drawing on observational data describing the participants' emotional affect, body language, and other forms of verbal and non verbal expression were written down by the researcher. The field notes served as an additional aid during the process of analysis.
The data analysis for this study followed the analytical process described by Moustakas (1990).  This analytical process involves the researcher's immersion with the data findings, experience of the data content, incubation drawing on the researcher's personal insights, new understandings and awareness of the subject's experiences and their meanings, illumination, which is the recognition of expanding meanings and new clarity brought to the thematic findings as well as explication, which is the process of making new connections within the emerging themes, and finally interpretation which is the expression of new understanding. 
SK carried out the initial thematic analysis of the interviews. The interview data was then reviewed by an independent researcher PB and a consensus of the thematic findings was undertaken through an iterative process and through discussion of the interview content.
The process of interpretation was taken from two sources: Questions generated during the study and the researchers' analytical insights that emerged from the interview process.
The consistency and trustworthiness of the data was achieved by:
Seven themes emerged that were considered most representative of participant's sexual functioning before and after the injury: (1) Recalling an Active Sexual Life, (2) Disconnection with Sexual Identity, (3) Incongruence between a Sense of Physical and Emotional Capability, (4) Isolation of Spouse or Sexual Partner, (5) Social Readjustment of spouse, (6) Perceived Physical Barriers to Improved Sexual Functioning, and (7) Coping and Attempting Ways of Sexual Integration
Recalling an active sexual life
In all cases, participants reported that before the onset of paraplegia, they had enjoyed an active and satisfying sexual life.In all seven cases, the primary means of sexual satisfaction for both the man and his partner was achieved through vaginal intercourse.
Patient #1 describes his lack of pleasure in his current sexual life
, I had a very good sexual life. I had intercourse everyday but now only once or twice a week and that does not give me any pleasure.
Patient #3 described his sexual life with his wife as enjoyable before this accident
Before the accident, my wife was very co-operative; she was getting good satisfaction out of that. We used to have foreplay and I was enjoying it while we indulged in sexual activities.
Patient #4 also spoke of a previously "good" sexual life
Before the accident, my wife was very co-operative and lovable.
Patient #2 described the differences between past experiences of intimacy and closeness and the present time when his wife now chooses to stay away from him
Previously my wife used to lie down with me, now she does not come near me.
Patient #6 recalled how enthusiastic his wife had been about engaging in sexual activity before the accident
Previously my wife was very co-operative and she was ready to indulge in sexual activity at any time.
Patient #7 remembered how his sexual life was before the accident.
My sexual life was enjoyable- It was most satisfying.
Disconnection of sexual identity
The emotional and physical impact in not being able to enjoy the same degree of sexual activity as before was consistent throughout these reports. The most striking problems appeared to manifest as anxiety, distress, and sadness as participants confirmed their inability to enjoy a previously active sexual life. Those men who reported that they were still capable of achieving an erection were also likely to report an inability to achieve or maintain an erection sufficient to satisfy his own or his wife's sexual needs.
After I got paralyzed, for one year I had no intercourse. Subsequently, I tried and could achieve penetration- but the semen comes out after one hour without my being aware of it. All of these things are distressing to me. Previously (before the injury) I could get an orgasm after 3 or 4 minutes but now… it doesn't give me any pleasure.
Incongruence between a sense of physical and emotional capability
Without exception, participants reported an emotional desire for sexual satisfaction through intercourse with the concurrent emphasis on physical incapability.
My mind wants sexual intercourse and I have a desire but I do not have a sustained erection. Sometimes I have an erection but it lasts for seconds only.
Both of us (my wife and I) have a sexual desire but my problem is that if I want to involve in sexual activities erection will not happen. Erection happens suddenly and at that time, I have to immediately engage in sexual activity.
I have a desire for sexual activity- my mind is excited during that time but after some time I lose interest. My erection lasts only for 5 minutes and then urine like fluid comes out of my penis and I lose interest.
It is clear from these latter reports that while erection might be possible for some of these men radical physical changes had now taken place. However, loss of physical ability did not equate to loss of sexual desire or the loss of hope in the process of trying to achieve a satisfying sexual life.
Isolation of spouse or sexual partner
These reports indicate that the loss of a previous satisfactory sexual life also affected the participants' sexual partner. Physical and emotional stress associated with the patient's wife's lack of sexual fulfilment with manifestations of hostility and resentment in some cases was evidenced by the participant's perception of his wife's inability to adapt to his decreased sexual and physical functioning.
I want to indulge in sexual activities but I am unable to perform. So I am distressed and my wife is also distressed. When I started my sexual life, I sustained paraplegia. I had many desires and my wife also had the same. But I don't have the ability to perform sexual intercourse now. My relationship with my wife is not like before as I am not like other men and cannot perform sexual activities. She has distress. It is not like before, her love has decreased However, I have to bear with my wife and learn to adjust.
After I got paralyzed, we sleep in separate rooms.
Social readjustment of spouse
In other reports, it became clear that the participant's paraplegic condition meant that everything in life now had to revolve around his current physical needs for attention as well as changes that had needed to occur in the household. This situation necessitated considerable effort by the spouse and the family to adjust to disruptions and changes within family life. Previous familial roles were now changed.
Patient #5 spoke of the changes in roles within his family
(In my role) previously I was the earning member. But now I am bedridden. My wife is looking after the household activities. so now I have difficulty (with that).
(In my present role) I don't have the capacity to go out and earn. I need to educate my child but I am unable to contribute for that- Now it is 11 years since my marriage (and) I have never sent my wife out for any job. I feel distress to send her out to work.
I still have the same attitude (in marriage) but my wife does not show much interest. I have told my wife if you want to leave me, just tell me, I will complete the necessary formalities and let her go and have a good life.
In other cases, reports of household adjustment in roles and role functioning were more positive. The participant's injury did not appear to have had a deleterious effect on the roles of the spouse or children. The husband and wife appear to have managed to follow traditional roles.
Even now, I am still the decision maker in my house. I use my mobile phone to talk to others. I manage things over the phone. My wife is very cooperative. I am bedridden that is all and my wife and I are very sad about that.
I still have the responsibility of the household activities- My wife will ask my opinion even for the simplest things.
The family is doing all that is necessary for me, my children and wife respect me as before. Whatever I want, my children take care of that. My children are very supportive.
Perceived physical barriers to improved sexual functioning
Personal distress was also present in participants' reports because of physical barriers in addition to those of erectile dysfunction. These additional barriers particularly in the area of urinary incontinence and the use of catheters were seen as a significant impediment to satisfactory sexual functioning.
I have a pressure sore on the back and also some injury on the penis. The injury on the penis is due to the condom catheter.
I pass urine involuntarily. So my wife does not come near me, her dress will be soaked and it will have a foul smell. Therefore, I cannot hug her. I need to get control of my bladder.
I am doing clean intermittent catheterisation but would like to avoid it and want to pass urine voluntarily. But when I get an erection, a few drops of urine spill out and. Although my wife and I still have sexual desire.
Coping and attempting ways of sexual reintegration
While there were few reports of satisfactory sexual reintegration following paraplegia a few participants had tried to adapt and cope with sexual desire despite their sexual limitations.
Patient #3 described his way of coping as a life characterized by imagined sexual activity
I have a strong sexual desire at present. My friends and I would talk about this and have some fun. They would tell me about sexual activities I could do even though I could not indulge in proper sexual intercourse. Now I get pleasure in talking about sex but I am not getting any physical satisfaction.
Patient #4 described the problem of reintegrating sexual activity, as it had once existed as an issue of inadequate physical privacy. Since the injury, this participant had slept in a room separate from his wife. Now he felt he could achieve an erection enough for intercourse and wanted to be able to start having a sexual life again. Yet there was a problem of inadequate bedroom space since his children were now older. This patient talked about his hopes for a change in this situation so that they could resume sexual activity
We (my wife and me) are in separate rooms since I got paralyzed. My room does not have a door and my daughter is in the next room. Once she gets married, we can indulge in sexual activities.
Patient #5 described a way of coping with sexual activity even though he was paralyzed from waist down
The only problem is that I cannot move like before. Otherwise, I am enjoying it, my wife and I have the same sexual desire, and we are satisfied.
I cannot give sexual satisfaction to my wife (through vaginal intercourse) so I use other methods to satisfy her.
The objective of this qualitative study was to determine the themes that represented the views and attitudes towards sexual functioning in men living with spinal cord injury in Kerala, India. The thematic results showed that the views and attitudes of the male participants were consistent in seven areas: Recalling an active sexual life, disconnection with sexual identity, incongruence between a sense of physical and emotional capability, isolation of spouse or sexual partner, social readjustment of spouse, perceived physical barriers to sexual functioning, coping and attempting ways of sexual reintegration.
While the topic area for participants was deeply personal and may have posed some discomfort at times there was also frankness as they discussed concerns about physical changes, sexual incapability, physical losses, loss of sexual identity, loss of status, and the diminished quality of life. In all cases, participants desired a healthy and active sexual life. Life as before was compromised with respect to its quality for both the participant and his family. The quality of sexual life for these men was not only affected on a physiological level but also compromised by significant social, existential, and emotional factors, as a result of the paraplegia. While sexual functioning and sensation were affected for both the participant and his spouse, a significant burden of added responsibility was also placed on the participant's spouse. The emotional stress caused by changes in the patient's life meant that his spouse had to find a way of coping in a relationship that lacked the stability and intimacy she had once known.
These reports, though often pessimistic, suggest that when the patient and spouse take the injury into consideration and use creativity and flexibility in their sexual activity, a better quality of life ensues. Physical disabilities such as sustained paraplegia clearly affect self-image negatively as well as self-confidence. In several of these reports, mobility was an issue that likely impeded masculine self-confidence. If the man had to use a wheelchair, some sexual positions may not be possible. Moreover, lack of muscle strength and the typical arousal methods often did not work. In many of these reports, the inability to sustain an erection resulted in predictable anxiety and frustration for both partners. Urinary incontinence was seen as one of the major barriers to sexual pleasure. It is clear from these reports, that an indwelling catheter will potentially inhibit spontaneity and sexual pleasure. Additionally, the constant effort of trying to achieve sexual satisfaction under difficult circumstances often led to a lack of perseverance and a discouraged attitude on the part of the participant. On the positive side, some of these reports indicate that sexual pleasure and sensation might still be experienced with a willing and cooperative spouse and when both partners have a clear desire for sexual activity.
The result of this study raise two important gaps that are absent in the research literature on sexual functioning in persons with a spinal cord injury: (1) Lack of Attention to Issues relating to Whole Person Care and (2) Lack of Attention to Issues relating to Quality of Sexual Life.
Lack of attention to issues relating to whole person care
Of particular interest was the way these themes overlapped in terms of all aspects of the participant as a whole and functioning person. Physical pain was not a single cause of suffering. Physical suffering was described as urinary incontinence, pressure sores, and injury to the penis. On the other hand, social pain was described as the inability to take full responsibility for the family and by the participant feeling different and "not like other men." Existential pain manifested through the participant's resolve that life prior to the injury was over. Psychological pain was revealed in the distress expressed by the participant in not being able to experience orgasm and being unable to satisfy his spouse as well as being unable to work and in the general expression that the participant was causing pain for others due to his condition.
It is noted that existing literature on sexual functioning of males with a spinal cord injury place little emphasis on whole person care models or the concept of "total pain," the latter of which is at the corner stone of good palliative care principles.
The principles of palliative care involve the whole person-"physical, psychological, social, and spiritual." While practicing physicians and caregivers may not be able to address all of these domains at all times they are aware that care must encompass all aspects of the whole person.  Suffering in this context is a complex phenomenon which extends beyond the biomedical domains of the physical self. Eric Cassell in his classic theory on the nature of suffering states: "Suffering is the specific distress that occurs when persons feel their intactness or integrity as persons is threatened or disintegrating". 
In summary, existing research on sexuality in persons with a spinal cord injury needs to extend beyond the biomedical model and give attention to suffering in the context of the needs of the whole person. This type of suffering extends beyond the sum of discrete biological units in that researchers and clinicians must be able to understand the patient's experience as fully and precisely as possible. While research designs need to be considered with respect to the person's medical condition the person's unique characteristics also need to be addressed e.g., history, work, family, spousal relations, personality, desires, opinions, as well as life expectations. In this way, research and its clinical recommendations will consider the notion of the patient as a whole person in "total pain" as a starting point rather than the systematic application of biomedical norms.
Lack of attention to issues relating to quality of sexual life
The themes identified in this study also overlapped with respect to issues related to quality of sexual life. In addition to physical problems , almost all other areas of daily living had changed and were no longer as satisfying or the same.
Quality of life is an area in the research literature which has been well studied in relation to cancer, health and wellness and in recent decades in relation to palliative care.  While quality of life issues in spinal cord injury have received some attention in the research literature, no studies were identified that specifically addressed the quality of life with respect to sexual functioning.
Existing research literature on quality of life in the cancer patients, that addresses sexual dysfunction acknowledges that quality of life is a multidimensional construct which encompasses physical, psychological, social and spiritual wellbeing.  It also acknowledges that sexuality and intimacy are essential to a person's health and well-being and important to a person's overall quality of life. Poor sexual functioning and poor sexual satisfaction are serious threats to good quality of life. ,
Yet in a review of qualitative and quantitative literature on health-related quality of life in people with a spinal cord injury there is an absence of attention to sexuality and intimacy as essential domains of quality of life. Lidal et al. note that "enhancing daily functioning and wellbeing are important goals in the treatment and assessment of persons with spinal cord injury". These researchers report on a quality of life assessment in a cross sectional study of 162 patients admitted to a hospital in Norway between 1961 and 1982. Using survey data with a SF 36 questionnaire, these researchers focused on physical functioning, bodily pain, social functioning and mental health. However, sexuality is not identified as a construct.
Hill et al. (2010)  conducted a systematic review to critically assess quality of life instruments used with spinal cord injury populations. While the majority of instruments used tools to assess physical, social, and psychological domains, none of these instruments included questions related to quality of life and sexual functioning. In some of these reports attention has been raised towards the need for longitudinal research on coping and adjustment to a spinal cord injury.  However, there has been no attention to the need for research on sexual dysfunction and the quality of life as it relates to sexuality in persons with a spinal cord injury.
In summary, current measures of quality of life have significant limitations in relation to their usefulness among people with a spinal cord injury who are suffering with sexual dysfunction and a limited quality of sexual life.
Future research needs to include greater attention to the design of both qualitative and quantitative measurement to address the domains of sexuality and sexual functioning.
This research aimed to qualitatively explore the views and attitudes towards sexual functioning in seven males living with spinal cord injury in Kerala, South India. The narrative descriptions of these men serve to demonstrate the complexities of sexual experience as it interconnects with all aspects of the whole person. Moreover, sexuality for the male who experiences a spinal cord injury with sustained paraplegia is pervasive and important with respect to all aspects of his quality of life. Currently, most studies on sexuality and spinal cord injury are focused on the clinical aspects of sexual dysfunction using the biomedical model in the design and development of research tools and instruments for measurement. The results of this study suggest that in future sexuality or sexual dysfunction should be examined using subjective assessment of participants and subjective measures. Investigative approaches could consider bio-psycho-social models if all of the complexities of sexuality and quality of life for this population are to be fully understood. These models of research could also be applied to the couple in the sexual relationship given that most studies to date have explored sexual functioning exclusively in either male or female populations.
This study is in agreement with the research literature reviewed earlier in that it calls for added attention to the psychological aspects of sexuality in spinal cord injured men. We ask professionals and informal carers to consider sexuality in terms of the quality of life of the whole person- physiological, psychological, social and spiritual. It is important to:
The results of this study should create greater awareness about emotional, social and sexual concerns of patients following a spinal cord injury. It should also hold interest for physicians, nurses, counsellors, social workers, and educators who work with patients with spinal cord disabilities and who have an interest in sexual rehabilitation for this population.
Limitations of the study
The following limitations of the study are identified:
This was a homogenous sample taken within in a particular cultural context and limits generalisability of the findings to cultures outside the Malayalam speaking male population in Kerala.
Interviews were translated from the Malayalam language into English and therefore some meanings and nuances may have been compromised due to the translation.
Given the extreme sensitive nature of the topic area, some participants may not have been comfortable in fully disclosing intimate details on personal sexual issues.
Ethical approval was obtained from the institution where the study took place. All interviews were conducted with the utmost care and sensitivity. Participants were informed they could also withdraw from the study if they desired. Informed consent was obtained. Participation was voluntary and confidentiality was fully maintained.
I would like to thank Dr. Biju Raghavan, Dr. Jayarajan, Dr. Jeremy R Johnson and Adv.Bindu K K for their valuable suggestions. This qualitative study was done as a part of the requirement for completing MSc in Palliative Medicine, Cardiff University, UK.