Writing in the Margins of Sexual Function Questionnaires: A Qualitative Analysis of Data from Women with Pelvic Floor Disorders

Abstract

Background The impact of pelvic floor disorders (PFDs) on female sexual function is not well understood, partly due to difficulties in measurement and evaluation. Aim We sought to assess how women with PFDs respond to sexual function questionnaires through an analysis of survey marginalia, or the comments written in the margins of fixed-choice surveys. Methods 94 women with PFDs completed validated written sexual function questionnaires (Global Study of Sexual Attitudes and Behaviors survey, Female Sexual Function Index, and the Pelvic Organ Prolapse/Urinary Incontinence Sexual Questionnaire, International Urogynecological Association-Revised). Marginalia, or the additions, eliminations, and changes subjects made (by hand) to survey items, were collected. Data were coded and analyzed qualitatively using grounded theory methodology. Outcomes Themes and emergent concepts related to the content of survey marginalia were the primary outcomes of this study. Results We observed 177 instances of marginalia across all questionnaires. Qualitative analysis revealed 7 preliminary themes and 2 emergent concepts. Preliminary themes included partner-related topics, loss, problems during intercourse, emotional problems, other medical problems, and survey answer choices failing to capture the spectrum of patient experiences. Emergent concepts revealed highly diverse sexual function in this population and a wide range of factors that influence sexual function. Clinical Implications Conducting qualitative studies alongside sexual function questionnaires can allow for a more meaningful assessment of the sexual function of women with various underlying conditions, such as PFDs. Strengths & Limitations This is the first study of its kind to analyze survey marginalia from sexual function questionnaires among women with PFDs. The limitations of this study include the inherently spontaneous nature of marginalia data. In addition, the ways in which study participants responded to sexual function questionnaires in our study may not be reflective of all potential subjects. Conclusion Analysis of survey marginalia from sexual function questionnaires amongst women with PFDs revealed new information regarding patients' histories, concerns, and thoughts. Over half of the women in this study felt the need to expand, explain, or eliminate responses from the questionnaires. Many subjects were no longer sexually active, which accounted for a large majority of participants leaving questions blank or responding with “N/A.” Standard sexual evaluation tools may fail to capture the complexity, spectrum, and depth and breadth of patient experiences.

Marginal material or key data? Understanding community attitudes to a survey about domestic and family violence

“…(2020), Parameshwar et al. (2020), and Stoudt (2016). Muddiman et al., Parameshwar et al., and Stoudt provide classifications largely focused on the perceived intention of the marginalia, while Bills et al.’s classifications are both reflective of intention and their content focus on sexual victimization (see Table 1).…”

“…We created thematic parent codes from our initial examination of the data and by looking at the categories previous researchers had employed in their analysis of marginalia. In particular, we noted the classifications developed by Muddiman, Lyttleton-Smith, and Moles (2018), Bills et al (2020), Parameshwar et al (2020), andStoudt (2016). Muddiman et al, Parameshwar et al, and Stoudt provide classifications largely focused on the perceived intention of the marginalia, while Bills et al's classifications are both reflective of intention and their content focus on sexual victimization (see Table 1).…”

“…Survey marginalia can offer an alternative avenue for participants to direct the researchers’ attention to issues that they believe are significant and to expand the limits of the information requested from them. Parameshwar et al.’s (2020) work on pelvic floor disorders uncovered important and previously unexplored issues via analysis of marginalia, informed future survey design, and assisted with the development of a complementary qualitative data collection component. Despite the opportunity that marginalia present, in contrast to the history and literature disciplines, Stoudt states that “[T]he social sciences have been slower to accept marginalia as legitimate data worth exploring” (2016, p. 188).…”

“…The act of adding marginalia to surveys has been understood in several ways. As foreshadowed above, it may indicate that participants had more to contribute to the research topic, or the survey instrument, than the structured, closed-question survey allowed (Clayton, Rogers, and Stuifbergen 1999) or that the survey tool did not adequately allow for the context and complexities of participants' lives (McClelland and Holland 2016;Parameshwar et al 2020). For research on sensitive, difficult, or personally affecting topics, marginalia may represent an important mode of communication from the participant to the researcher, especially when concepts, perceptions, or experiences, such as that of pain, are challenging to measure or difficult to articulate in short-form response options (Smith 2008).…”