RESUMEN
Background: Chronic scrotal content pain, sometimes referred to as chronic orchialgia, is a common urological condition that gives rise to persistent and often severe painful stimuli to the scrotum and surrounding structures. Despite its relative commonality, accounting for over 2% of urological visits, chronic scrotal content pain is complex to manage and patients may be required to access multiple providers and undergo invasive procedures, including microsurgical spermatic cord denervation (MSCD) surgery. Objective: The objective of this study was to understand the experiences and perspectives of persons with chronic scrotal content pain and accessing MSCD surgery. Design: An exploratory qualitative design, guided by interpretive description and integrated knowledge translation, was adopted. Methods: We conducted in-depth qualitative interviews with six patients with chronic scrotal content pain who underwent MSCD surgery in a surgical center in Western Canada. Data were analyzed thematically. Results: Analysis of the study data resulted in three core themes: living with chronic scrotal content pain, quality of life, and MSCD procedure and outcomes. We highlight the debilitating nature of pain and the broad impacts upon health, quality of life, and social functioning. Participants described how MSCD surgery offered an effective solution for persistent and debilitating pain. For the participants, MSCD surgery offered hope and the chance to regain their normality. Conclusion: For those with chronic scrotal content pain, access to a pain specialist, along with the adoption of a biopsychosocial approach to pain and early access to MSCD surgery, may improve patient experiences and outcomes. Considering the high prevalence of urological pain, greater interdisciplinary care is needed in order to support more effective and timely management.
RESUMEN
INTRODUCTION: The importance of including people affected by research (e.g., community members, citizens or patient partners) is increasingly recognized across the breadth of institutions involved in connecting research with action. Yet, the increasing rhetoric of inclusion remains situated in research systems that tend to reward traditional dissemination and uphold power dynamics in ways that centre particular (privileged) voices over others. In research explicitly interested in doing research with those most affected by the issue or outcomes, research teams need to know how to advance meaningful inclusion. This study focused on listening to voices often excluded from research processes to understand what meaningful inclusion looks and feels like, and asked what contributes to being or feeling tokenized. METHODS: In this deliberative dialogue study, 16 participants with experience of navigating social exclusions and contributing to research activities reflected on what makes for meaningful experiences of inclusion. Using a co-production approach, with a diversely representative research team of 15 that included patient and community partners, we used critically reflective dialogue to guide an inclusive process to study design and implementation, from conceptualization of research questions through to writing. RESULTS: We heard that: research practices, partnerships and systems all contribute to experiences of inclusion or exclusion; the insufficiency or absence of standards for accountability amplifies the experience of exclusion; and inclusive practices require intention, planning, reflection and resources. CONCLUSIONS: We offer evidence-informed recommendations for the deeply relational work and practices for inclusivity, focused on promising practices for cultivating welcoming systems, spaces and relationships. PATIENT OR PUBLIC CONTRIBUTION: This work reflects a co-production approach, where people who use and are affected by research results actively partnered in the research process, including study design, data-generating activities, analysis and interpretation, and writing. Several of these partners are authors of this manuscript.