Abstract
Study Objective: Mayer-Rokitansky-Küster-Hauser Syndrome (MRKH) is a female
reproductive disorder characterised by absence or underdevelopment of the uterus, cervix and
vagina. Limited research has examined factors related to psychological adjustment in MRKH.
This study aimed to explore associations between illness representations, self-concept, psychological distress and self-esteem in MRKH.
Design: Cross-sectional.
Setting: Participants were recruited globally online and from patient meetings.
Participants: 263 people with MRKH (ages 16.1-74.4; M=31.7) completed questionnaires.
Intervention: None.
Main Outcome Measures: Validated self-reported measures of psychological distress and self-esteem (outcomes) and illness representations, self-concept, social support-seeking, and positive affect (hypothesised correlates) were explored in correlation and hierarchical regression analyses alongside demographic and clinical variables.
Results: Younger age and shorter time since diagnosis was associated with higher distress and lower self-esteem. People with MRKH reported significantly higher distress and lower self-esteem than the general population. Higher distress and lower self-esteem were associated with higher reported engulfment (defining one’s identity or feeling consumed by MRKH) and beliefs about the serious consequences of MRKH, and lower reported MRKH coherence, enrichment (positive changes to self-identity because of MRKH) and positive affect.
Conclusions: Findings suggest that the impact of MRKH on identity plays an important role in adjustment. High perceived coherence and maintenance of positive affect may play a protective role in psychological adjustment. A 12-month follow-up study is planned to examine associations between these variables longitudinally. Baseline data suggest that early 3
availability of psychological support would be beneficial, and interventions focused on identity and psychoeducation about MRKH would be valuable.
reproductive disorder characterised by absence or underdevelopment of the uterus, cervix and
vagina. Limited research has examined factors related to psychological adjustment in MRKH.
This study aimed to explore associations between illness representations, self-concept, psychological distress and self-esteem in MRKH.
Design: Cross-sectional.
Setting: Participants were recruited globally online and from patient meetings.
Participants: 263 people with MRKH (ages 16.1-74.4; M=31.7) completed questionnaires.
Intervention: None.
Main Outcome Measures: Validated self-reported measures of psychological distress and self-esteem (outcomes) and illness representations, self-concept, social support-seeking, and positive affect (hypothesised correlates) were explored in correlation and hierarchical regression analyses alongside demographic and clinical variables.
Results: Younger age and shorter time since diagnosis was associated with higher distress and lower self-esteem. People with MRKH reported significantly higher distress and lower self-esteem than the general population. Higher distress and lower self-esteem were associated with higher reported engulfment (defining one’s identity or feeling consumed by MRKH) and beliefs about the serious consequences of MRKH, and lower reported MRKH coherence, enrichment (positive changes to self-identity because of MRKH) and positive affect.
Conclusions: Findings suggest that the impact of MRKH on identity plays an important role in adjustment. High perceived coherence and maintenance of positive affect may play a protective role in psychological adjustment. A 12-month follow-up study is planned to examine associations between these variables longitudinally. Baseline data suggest that early 3
availability of psychological support would be beneficial, and interventions focused on identity and psychoeducation about MRKH would be valuable.
| Original language | English |
|---|---|
| Number of pages | 33 |
| Journal | Journal of Pediatric and Adolescent Gynecology |
| Publication status | Accepted/In press - 10 Jul 2020 |
Keywords
- Mayer-Rokitansky-Küster-Hauser
- MRKH
- vaginal agenesis
- illness representations
- identity
- adjustment
- distress
- self-esteem