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

Sexual functioning in men living with a spinal cord injury–A narrative literature review

Background: Sexual dysfunction is a major concern for Indian men living with a spinal cord injury Objectives: To examine the literature related to sexuality traumatic cord injury and its impact on sexual functioning. Materials and Methods: Databases using Cumulative Index to Nursing and Allied Health Literature (CINAHL) 2000–2012, Medline 1989–2012, Applied Social Sciences Index and Abstracts (ASSIA) 1989–2012 and Google Scholar were the search engines used used for literature review. Results: The search yielded a total of 457 articles and only 75 of them were found relevant. The minimum number of articles required to meet the inclusion criteria for this review was 25–30 articles. Out of the 75 articles, 33 were considered relevant or related to the topic of sexual functioning, spinal cord injury, and paraplegia. Six areas were identified: Sexual stigmatization, physiological barriers to sexual satisfaction, clinical aspects of sexual functioning, biomedical approaches to sexual dysfunction, partner satisfaction, and lack of accessibility to sexual education. Conclusion: Spinal cord injury and sexual functioning affects a large segment of the male Indian population, yet most current research focuses on quantitative measurement with the emphasis on ejaculatory dysfunction, orgasm impairment, incontinence, and other physiological dysfunction. Further research is needed to address the subjective accounts of patients themselves with respect to the emotional and social impact of sexual disability. This would help to identify the best possible outcomes for both treatment and rehabilitation

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

Creation of minimum standard tool for palliative care in India and self-evaluation of palliative care programs using it

Background: It is important to ensure that minimum standards for palliative care based on available resources are clearly defined and achieved. Aims: (1) Creation of minimum National Standards for Palliative Care for India. (2) Development of a tool for self-evaluation of palliative care organizations. (3) Evaluation of the tool in India. In 2006, Pallium India assembled a working group at the national level to develop minimum standards. The standards were to be evaluated by palliative care services in the country. Materials and Methods: The working group prepared a "standards" document, which had two parts - the first composed of eight "essential" components and the second, 22 "desirable" components. The working group sent the document to 86 hospice and palliative care providers nationwide, requesting them to self-evaluate their palliative care services based on the standards document, on a modified Likert scale. Results: Forty-nine (57%) palliative care organizations responded, and their self-evaluation of services based on the standards tool was analyzed. The majority of the palliative care providers met most of the standards identified as essential by the working group. A variable percentage of organizations had satisfied the desirable components of the standards. Conclusions: We demonstrated that the "standards tool" could be applied effectively in practice for self-evaluation of quality of palliative care services

Enhancing the outcome of quality improvement education of the National Cancer Grid, India - An A3 methodological study

Background: Quality being an innate mandate when providing healthcare, competency in quality improvement (QI) has become an important core skill for clinicians to resolve inadequacies within clinical settings. The National Cancer Grid-India (NCG) launched the QI training initiative in collaboration with Stanford Medicine, USA, after a successful pilot in 2017. The nonuniform progress of QI projects during the 2018 cohort left the NCG-QI-Hub dissatisfied. Objectives: The primary objective of this study was to enhance the outcome of Quality Improvement Education of the NCG-India. The secondary objective was to ensure confidence in applying A3 methodological thinking among the cohort team leaders and national mentors after completion of their training. Materials and Methods: This study was conducted online by the newly established multicentric virtual National Cancer Grid Quality Initiative-Hub India (NCG-QI-Hub) between August 2019 and July 2020. A3 methodology for QI was used to analyze the QI problem, which was stated as “The NCG-QI-Hub is dissatisfied with the variability of outcomes of their QI training program.” The SMART goal was to improve the overall satisfaction score of the NCG-QI-Hub-team, recorded monthly after each training session, from 6.6/10 at baseline (graduation of the 2018 cohort) to ≥ 8.5/10 at graduation of the 2019 cohort. Results: The average satisfaction score of the NCG-QI-Hub team at the graduation of the 2019 cohort was 8.7/10. The Project Progress Score (PPS) amongst 2019 graduating teams was between 4.0/5.0 and 4.5/5.0 (Standard deviation(SD) 0.2421). The average confidence level of the 2019 cohort was 4.48/5.0, while that of QI-India mentors was 4.27/5.0 when measured at graduation. The QI project achieved and exceeded the set target of 8.5/10, increasing the satisfaction score of the NCG-QI-Hub-team. Conclusion: Good practice interventions derived through an A3-methodological study of the NCG-QI-Hub training processes significantly improved its training outcomes

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