A qualitative exploration into the role of illness perceptions in endometriosis-related quality of life

Abstract

AbstractObjectivesEndometriosis is linked to adverse quality of life (QoL) outcomes. In the absence of effective treatment for endometriosis-related symptoms, supporting the QoL of those experiencing endometriosis is crucial. Illness perception (IP) interventions have prompted modest increases in QoL in several chronic conditions, yet IPs have not been comprehensively studied in relation to endometriosis. It is, therefore, necessary to examine the IPs held by individuals experiencing endometriosis to establish whether IP-based interventions might be useful in supporting QoL in this population. This research aims to gain an understanding of the IPs held by people experiencing endometriosis and their impact on QoL.DesignQualitative using one-to-one online semi-structured interviews.MethodsThirty individuals with endometriosis participated. Interviews sought to gain an understanding of participants’ experiences and perceptions in relation to living with endometriosis. Reflexive thematic analysis was used to develop themes.ResultsThree major themes were developed: (1) a life disrupted; (2) lost and fragmented sense of self; and (3) complex emotional responses. Largely negative IPs were held by individuals living with the condition which, along with endometriosis-specific symptoms and reduced functioning, fuelled fears for the future and reduced QoL.ConclusionsEndometriosis-specific symptoms fuelled adverse QoL outcomes directly, and indirectly through moulding IPs. The disruption to the life trajectory associated with experiencing the condition as well as perceptions of control had a major impact on participants’ wellbeing, self-concept, and the varied emotional responses associated with experiencing endometriosis. IP-based interventions may support the wellbeing of those experiencing endometriosis whilst effective treatment is sought.