ABSTRACT
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.
ABSTRACT
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.
