Investigation of patients' understanding of fibromyalgia: Results from an online qualitative survey.

OBJECTIVE: An important component to effective fibromyalgia treatment is patient education about the condition. While previous educational interventions have been developed, these have not incorporated the lived experiences of patients and may not address common misunderstandings among those who may benefit from these interventions. This study aimed to explore understanding, confusion, and gaps in knowledge about fibromyalgia among those who report a fibromyalgia diagnosis. METHODS: Participants were recruited via clinic flyers and the social media page of a chronic pain research laboratory. Participants completed an online survey that assessed their knowledge of fibromyalgia via open-ended questions. Responses were analyzed via thematic analysis to identify, analyze, and report themes. RESULTS: Thirty-eight participants completed the survey (63% female, ages 18-68). Common themes that arose from patients included being unsure of the cause of their fibromyalgia, frustration and confusion about the random/variable nature of symptoms and flares, feeling that their condition was invisible, and desiring more information on available treatments. CONCLUSION: Participants in this study expressed confusion about many aspects of fibromyalgia and a desire for more understanding from others in their life about this condition. PRACTICE IMPLICATIONS: Future interventions would benefit from tailoring fibromyalgia education to the specific knowledge and lived experiences of patients.

Family consequences of potentially traumatic pediatric medical events: Implications for trauma-informed care.

Extensive research demonstrates that pediatric medical events can be traumatic for patients, caregivers, and siblings, but the aftereffects of these potentially traumatic events for the family and its members are not well documented. Through focus groups with patients, caregivers, and siblings, this qualitative study examined the perceived consequences of potentially traumatic medical events for individual family members and the family as a whole. Sixteen focus groups (6 caregiver, 5 patient, 5 sibling) were conducted. Participants included 44 caregivers, 24 patients, and 14 siblings from 28 families with children treated in cardiology, endocrinology, oncology, orthopedics, or pulmonology. Constant-comparison and directed-content analysis were used to analyze the resulting data. Six themes regarding the family consequences of potentially traumatic medical events emerged: (a) family members experience strong emotional reactions and distressing thoughts, (b) family members experience trauma-related reactions and behaviors, (c) family patterns and routines change, (d) family conflict arises, (e) family members feel different from their peers and strive for normalcy, and (f) family members construct positive narratives about these events and experience positive consequences and emotions. These findings reveal the consequences of potentially traumatic medical events that extend beyond traumatic stress symptoms. Moreover, the impact of these consequences is seen within both individual family member responses and responses within the family system as a whole. Understanding both individual- and family-level consequences of medical events is important in order to provide family-centered, trauma-informed care for children with illness or injury and their family members. (PsycINFO Database Record (c) 2020 APA, all rights reserved).