Views on disclosing mistreatment: A focus group study of differences between people with MS and their caregivers

Both female and male persons with MS are at increased risk for various forms of physical, sexual, and disability-specific abuse. An ongoing study revealed a subset of respondents in which the caregiver acknowledged mistreatment of the person with MS, but that person either denied or minimized mistreatmentMethodsIn an effort to understand this phenomenon, we conducted 4 focus groups of male caregivers, female caregivers, male persons with MS, and female persons with MS (total n=15). Data were analyzed using qualitative methodologyResultsResults included the surprising finding that, despite participants having been identified as recipients or perpetrators of mistreatment, all denied any form of abuse in the focus group setting. We concluded that attitudes toward mistreatment in these discrepant couples varied based on gender. Specifically, male caregivers may disclose abuse as a cry for help, whereas female caregivers may feel such behavior is justified because of the perceived “provocations” of the person with MS. Women with MS appeared reluctant to acknowledge abuse because they feared loss of their primary relationship; while men with MS calculated that putting up with a certain amount of mistreatment was worthwhileConclusionMore attention should be paid in identifying and understanding this subset of persons with MS and their informal caregivers.

► In persons with MS/caregiver couples, views of mistreatment vary by role and gender.
► Male caregivers disclose PwMS mistreatment as a cry for help; female caregivers rationalize PwMS mistreatment.
► Female PwMS are reluctant to admit mistreatment; male PwMS accept some mistreatment as a tradeoff.