Sexuality: a matter of life and death: successful sexual rehabilitation of men with spinal cord injury in Nepal

Sexual activity is an important aspect of activities of daily living. Traumatic spinal cord injury is well known for its notorious effect in altering sexual function and sex life among men. Despite abundant literature and knowledge on the extent of damage that Spinal Cord Injury (SCI) can cause on the sexual function of MWSCI and biomedical interventions to address them, the sexual needs and concerns of most MWSCI remain largely unmet. There is equally growing evidence depicting health practitioners' unwillingness (attitude), lack of knowledge and skills in addressing sexual issues of MWSCI and the need for improving sexual rehabilitation services. In addition, there are very few qualitative studies exploring the sexual concerns and needs and the psychosocial impact on their health and well-being of MWSCI from their perspective. These studies identified the need for exploring sexual rehabilitation needs from the perspective of MWSCI. This study explored the lived experiences and sexual concerns and needs of MWSCI and the attitudes of health professionals, family members and significant others in society from the perspective of Nepalese MWSCI. This study used a phenomenological methodology. Data were collected by conducting semi-structured interviews of 17 MWSCI who were purposively sampled with maximum variation. The main research questions were: 1) What are the sexual concerns and needs of MWSCI; and 2) What are the attitudes of health professionals, family members and significant others towards the sexuality of MWSCI. Findings showed that various personal, social and economic factors in addition to impaired sexual function secondary to SCI play an important role in the sex life of MWSCI. The quality of existing health care services affected the overall outcome of SCI including sex life of these MWSCI. Most often sexual rehabilitation was not the priority of rehabilitation programs and when they did cover this issue the focus was on the bio-medical aspects of sexual functioning. In addition, medical interventions to address sexual functions such as erectile dysfunction and infertility appeared to be fragmented and inadequate. Most MWSCI felt a need to broach their sexual concerns early on with more information during rehabilitation and after returning to the community. It is both surprising and illuminating to know how soon after injury men reported being curious about their sex life and sexual capacity. Indeed, sexuality after SCI is much more important than practitioners and society seem to have assumed. Many underlying sexual meanings, concerns and needs were identified and these typically extended beyond concerns about pleasure. Sexual function can be a matter of life and death for participants. In the absence of a social security safety net and previous income, these concerns focus on: maintaining family and community structures; ensuring ongoing care; and fear of dying without social supports. Sex can be seen as a 'life line' and recovery is determined by the social prejudices, family politics, and cultural pressures to have children and a wife for support. On the other hand, failure of the health care system to deliver the necessary SCI care including sexual rehabilitation adds to men's fear of being unable to fulfil their prescribed masculine roles. The sociocultural and environmental impact on manhood forces some of these men to redefine their masculinity and overcome their reliance on traditional scripts for masculine identity that stress sexual prowess. This research thus proposes an adapted protocol for sexual rehabilitation considering various factors and dimensions of sexual issues for the benefit of Nepalese MWSCI. These overall concerns and needs of MWSCI are grouped under five major themes: early and ongoing sexual concerns; loss and reconstruction of manhood; challenges to and failures of the health care delivery; sexuality as a matter of life and death; and the need for better SCI sexual rehabilitation