‘So many women suffer in silence’: a thematic analysis of women’s written accounts of coping with endometriosis

Abstract

Objective: To understand women’s experiences of coping with endometriosis, and impact on their lives.

Design: Women accessed an online questionnaire through a U.K.-based endometriosis charity website.

Methods: Thirty-four women, aged 22–56 years, with self-reported medically-diagnosed endometriosis, 30 of whom were White, responded to open-ended questions, analysed using inductive thematic analysis.

Results: Participants spoke about their lives being a constant struggle, where they tried to maintain their personal and working lives whilst dealing with long-term pain. Women had to ‘battle’ for an accurate diagnosis, and had limited faith in health professionals. Coping strategies included avoidance of social events to conserve energy (self-pacing), and avoiding taking painkillers to retain alertness. Women did not feel able to be honest with family and friends about their symptoms, and felt socially isolated and misunderstood.

Conclusions: Implications for health professionals are discussed, including the need for earlier diagnosis and taking women’s symptoms more seriously at referral; understanding the need to conserve energy in the context of long-term pain; that not taking pain medication may be an active choice to retain alertness; and that avoiding being honest with friends and family and subsequent feelings of isolation may be common experiences relevant to designing treatment programmes.     

Characterizing the Musical Phenotype in Individuals With Williams Syndrome

Williams Syndrome (WS), a neurodevelopmental genetic disorder, is characterized by peaks and valleys in mental function: substantial impairments in cognitive domains such as reasoning, arithmetic ability, and spatial cognition, alongside relatively preserved skills in social domains, face processing, language, and music. We report the results of a comprehensive survey on musical behaviors and background administered to the largest sample of individuals with WS to date (n = 118, mean age = 20.4), and compare the results to those obtained from a control group of typically developing normal individuals (n = 118, mean age = 20.9) and two groups of individuals with other neurodevelopmental genetic disorders, Autism (n = 30, mean age = 18.2) and Down Syndrome (n = 40, mean age = 17.2). Individuals with WS were found to be rated higher in musical accomplishment, engagement, and interest than either of the comparison groups, and equivalent on most measures to the control group. Compared to all other groups including the controls, the WS individuals displayed greater emotional responses to music, manifested interest in music at an earlier age, and spent more hours per week listening to music. In addition, the effects of music listening (whether positive or negative) tended to last longer in the WS group. A factor analysis extracted seven principal components that characterize the musical phenotype in our sample, and discriminant function analysis of those factors was able to successfully predict group membership for the majority of cases. We discuss the neurobiological implications of these findings.     

Stakeholder Opinions and Ethical Perspectives Support Complete Disclosure of Incidental Findings in MRI Research

How far does a researcher’s responsibility extend when an incidental finding is identified? Balancing pertinent ethical principles such as beneficence, respect for persons, and duty to rescue is not always straightforward, particularly in neuroimaging research where empirical data that might help guide decision making are lacking. We conducted a systematic survey of perceptions and preferences of 396 investigators, research participants, and Institutional Review Board members at our institution. Using the partial entrustment model as described by Richardson, we argue that our data supports universal reading by a neuroradiologist of all research MRI scans for incidental findings and providing full disclosure to all participants.     

Structural Equation Modeling Approaches for Analyzing Partially Nested Data

Study designs involving clustering in some study arms, but not all study arms, are common in clinical treatment-outcome and educational settings. For instance, in a treatment arm, persons may be nested in therapy groups, whereas in a control arm there are no groups. Methodological approaches for handling such partially nested designs have recently been developed in a multilevel modeling framework (MLM-PN) and have proved very useful. We introduce two alternative structural equation modeling (SEM) approaches for analyzing partially nested data: a multivariate single-level SEM (SSEM-PN) and a multiple-arm multilevel SEM (MSEM-PN). We show how SSEM-PN and MSEM-PN can produce results equivalent to existing MLM-PNs and can be extended to flexibly accommodate several modeling features that are difficult or impossible to handle in MLM-PNs. For instance, using an SSEM-PN or MSEM-PN, it is possible to specify complex structural models involving cluster-level outcomes, obtain absolute model fit, decompose person-level predictor effects in the treatment arm using latent cluster means, and include traditional factors as predictors/outcomes. Importantly, implementation of such features for partially nested designs differs from that for fully nested designs. An empirical example involving a partially nested depression intervention combines several of these features in an analysis of interest for treatment-outcome studies.     

Control of Multimovement Coordination

The present paper provides some hypotheses concerning the role of sensorimotor mechanisms in the coordination and programming of multimovement behaviors. The primary database is from experiments on the control of speech, a motor behavior that inherently requires multimovement coordination. From these data, it appears that coordination may be implemented by calibrated, sensorimotor actions which couple multiple movements for the accomplishment of common functional goals. The data from speech and select observations in other motor systems also reveal that these sensorimotor linkages are task-dependent and may underlie the intermovement motor equivalence that characterizes many natural motor behaviors. In this context, it is hypothesized also that motor learning may involve the calibration of these intermovement sensorimotor actions. These observations in turn provide some alternative perspectives on the concept of a motor program, primarily suggesting that individual movements and muscle contractions are not wholly prespecified, but shaped by sensorimotor adjustments.     

THERAPIST DEFENSIVENESS AND MARITAL THERAPY PROCESS AND OUTCOME

Abstract

This study examined the effect of couple socioeconomic status (SES); pretherapy marital adjustment; and therapist, husband, and wife defensiveness during the third session of marital therapy on posttherapy marital adjustment. Participants were 22 therapists and 88 couples. Each therapist treated 4 couples, 2 from the middle SES level and 2 from the lower SES level. Path analyses revealed that for husbands higher marital satisfaction before therapy was associated with higher adjustment at the end of therapy, but defensive therapist behavior during therapy was associated with lower posttherapy adjustment. A similar pattern was found for wives, but this should be interpreted with caution owing to potential dependencies in the wives' posttherapy adjustment scores. Neither SES nor pretherapy adjustment predicted therapist defensive behavior in therapy, and SES did not predict marital therapy outcome variance. Results suggest that therapist defensive behavior may reflect a style or characteristic of some marital therapists.