Views and Experiences of Sex, Sexuality and Relationships Following Spinal Cord Injury: A Systematic Review and Narrative Synthesis of the Qualitative Literature

Research examining the effects of spinal cord injury on sexuality has largely focused on physiological functioning and quantification of dysfunction following injury. This paper reports a systematic review of qualitative research that focused on the views and experiences of people with spinal cord injury on sex and relationships. The review addressed the following research question: What are the views and experiences of people with spinal cord injury of sex, sexuality and relationships following injury? Five databases were relevant and employed in the review: CINAHL (1989-2016 only), PsychInfo, PubMed, Scopus and Web of Science, for research published between 1 January 1980 and 30 November 2019. After removing duplicates, 257 records remained and were screened using a two-stage approach to inclusion and quality appraisal. Following screening, 27 met the criteria for inclusion and are reported in the paper. The review includes studies from fifteen countries across five continents. Two main approaches to data analysis summary and thematic synthesis were undertaken to analyze the qualitative data reported in the papers. The analysis revealed four main themes: sexual identity; significant and generalized others, sexual embodiment; and; sexual rehabilitation and education

Views and attitudes towards sexual functioning in men living with spinal cord injury in Kerala, south India

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. Aims: In this qualitative study, the authors explore views and attitudes towards sexual functioning in men living with a spinal cord injury in Kerala, India. Materials and Methods: Semi-structured and open-ended interviews were conducted with seven participants according to IE Seidman′s phenomenological approach. Thematic analysis followed the analytic process outlined by Moustakas (1990). Results: Identification of seven interconnected themes included: Recalling an active sexual life, disconnection with sexual identity, incongruence between emotional and physical capability, spousal isolation, social readjustment of spouse, physical barriers to sexual functioning, coping, and reintegration. Conclusions: Patient′s descriptions of suffering demonstrate complexities of experience in sexual functioning. All patients were sexually active prior to the injury. This was now lost causing anxiety, distress, and sadness. A huge gap existed between sexual desire and physical capability. The patient and spouse were now isolated emotionally, socially, and physically. Physical barriers included urinary incontinence and indwelling catheters. While several self-evolved coping strategies were identified, support from palliative care services was not evident. Two important gaps exist in research and practice: (1) Attention to sexual issues and whole-person care. (2) Attention to quality of sexual life. Future qualitative studies on sexual dysfunction could provide a useful adjunct to current literature which is predominantly biomedical in its approach

The Palliative Care-Promoting Access and Improvement of the Cancer Experience (PC-PAICE) Project in India: A Multisite International Quality Improvement Collaborative.

Mentors at seven U.S. and Australian academic institutions initially partnered with seven leading Indian academic palliative care and cancer centers in 2017 to undertake a program combining remote and in-person mentorship, didactic instruction, and project-based learning in quality improvement (QI). From its inception in 2017 to 2020, the Palliative Care-Promoting Accesst and Improvement of the Cancer Experience Program conducted three cohorts for capacity building of 22 Indian palliative care and cancer programs. Indian leadership established a Mumbai QI training hub in 2019 with philanthropic support. In 2020, the project which is now named Enable Quality, Improve Patient care - India (EQuIP-India) focuses on both palliative care and cancer teams. EQuIP-India now leads ongoing Indian national collaboratives and training in QI and is integrated into India's National Cancer Grid. Palliative Care-Promoting Accesst and Improvement of the Cancer Experience demonstrates a feasible model of international collaboration and capacity building in palliative care and cancer QI. It is one of the several networked and blended learning approaches with potential for rapid scaling of evidence-based practices