“Am I ‘Normal’?”: Adolescents’ Awareness and Experiences of Endometriosis and Menstruation

The majority of those with endometriosis, a common condition affecting an estimated 10% of cisgender women of reproductive age, experience symptom onset during adolescence. However, little research attention has been given to the voices of adolescents and young adults living with the chronic condition. Lack of awareness of endometriosis, menstrual stigmas, and inadequate menstrual health education are considered to contribute to well documented delays in the diagnosis of endometriosis. To date, this thesis is the first empirical study to explore United Kingdom-based adolescents’ awareness, as well as their experiences of, endometriosis. Taking a pragmatic approach, with a feminist lens, two studies were undertaken: a qualitative study (Study 1) exploring the experiences of endometriosis among adolescents/young adults with a diagnosis of endometriosis; and a quantitative study (Study 2) investigating the awareness of endometriosis among adolescent girls, as well as their experiences of and attitudes towards menstruation. In Study 1, twenty-four participants aged 18-24, recruited from endometriosis support groups and social media, participated in qualitative narrative interviews. Findings showed that the symptoms of endometriosis in adolescence are wide-ranging, and significantly interfere with many aspects of life, including school, sport, social life, and relationships. Adolescents face a long delay in obtaining a diagnosis, which is contributed to by a widespread lack of awareness of endometriosis and frequent dismissals by health professionals. Drawing on Bury’s (1982) concept of ‘biographical disruption’, qualitative findings highlight how adolescents’ experiences are significantly shaped by their age and life-stage. This study makes a novel contribution demonstrating how endometriosis in adolescence is experienced as a ‘biographical threat’, to both their present and imagined life-trajectories. Furthermore, this biographical threat is contextualised by the gendered, contested, and stigmatised nature of endometriosis. Endometriosis, therefore, not only impacts many of the key aspects of adolescent life, but threatens adolescents’ lives and self-concepts as teenagers/young women, and their imagined futures as mothers/parents, intimate partners, and careered people. Study 2 used a cross-sectional survey, with 442 teenage girls aged 15 to 19, recruited from schools in the West Midlands. Findings highlighted that most (94%) adolescent girls experience period pain, which for most of these is moderate to severe; many (23%) miss school due to their periods (most often due to pain); and many do not know whether their periods are regular or typical. Only 8% of girls reported that they thought periods were positive, and there was further evidence of stigma and taboos surrounding menstruation, particularly towards discussing it with males and teachers. Finally, an overwhelming majority (92%) had no knowledge of endometriosis, and most (85%) would like to learn about it given the opportunity. The most popular method of gaining such knowledge was at school (51%). This research contributes to the evidence base pertaining to adolescent menstruation and endometriosis, and offers support for the need to provide de-stigmatised menstrual health education to all (including education about endometriosis), and to ensure an age-based approach to endometriosis healthcare and support. It also informs future research in this area

Clinical and cost-effectiveness of contingency management for cannabis use in early psychosis: the CIRCLE randomised clinical trial

Background Cannabis is the most commonly used illicit substance among people with psychosis. Continued cannabis use following the onset of psychosis is associated with poorer functional and clinical outcomes. However, finding effective ways of intervening has been very challenging. We examined the clinical and cost-effectiveness of adjunctive contingency management (CM), which involves incentives for abstinence from cannabis use, in people with a recent diagnosis of psychosis. Methods CIRCLE was a pragmatic multi-centre randomised controlled trial. Participants were recruited via Early Intervention in Psychosis (EIP) services across the Midlands and South East of England. They had had at last one episode of clinically diagnosed psychosis (affective or non-affective); were aged 18 to 36; reported cannabis use in at least 12 out of the previous 24 weeks; and were not currently receiving treatment for cannabis misuse, or subject to a legal requirement for cannabis testing. Participants were randomised via a secure web-based service 1:1 to either an experimental arm, involving 12 weeks of CM plus a six-session psychoeducation package, or a control arm receiving the psychoeducation package only. The total potential voucher reward in the CM intervention was £240. The primary outcome was time to acute psychiatric care, operationalised as admission to an acute mental health service (including community alternatives to admission). Primary outcome data were collected from patient records at 18 months post-consent by assessors masked to allocation. The trial was registered with the ISRCTN registry, number ISRCTN33576045. Results: 551 participants were recruited between June 2012 and April 2016. Primary outcome data were obtained for 272 (98%) in the CM (experimental) group and 259 (95%) in the control group. There was no statistically significant difference in time to acute psychiatric care (the primary outcome) (HR 1.03, 95% CI 0.76, 1.40) between groups. By 18 months, 90 (33%) of participants in the CM group, and 85 (30%) of the control groups had been admitted at least once to an acute psychiatric service. Amongst those who had experienced an acute psychiatric admission, the median time to admission was 196 days (IQR 82, 364) in the CM group and 245 days (IQR 99,382) in the control group. Cost-effectiveness analyses suggest that there is an 81% likelihood that the intervention was cost-effective, mainly resulting from higher mean inpatient costs for the control group compared with the CM group, however the cost difference between groups was not statistically significant. There were 58 adverse events, 27 in the CM group and 31 in the control group. Conclusions Overall, these results suggest that CM is not an effective intervention for improving the time to acute psychiatric admission or reducing cannabis use in psychosis, at least at the level of voucher reward offered

“Am I ‘Normal’?”: Adolescents’ Awareness and Experiences of Endometriosis and Menstruation

The majority of those with endometriosis, a common condition affecting an estimated 10% of cisgender women of reproductive age, experience symptom onset during adolescence. However, little research attention has been given to the voices of adolescents and young adults living with the chronic condition. Lack of awareness of endometriosis, menstrual stigmas, and inadequate menstrual health education are considered to contribute to well documented delays in the diagnosis of endometriosis. To date, this thesis is the first empirical study to explore United Kingdom-based adolescents’ awareness, as well as their experiences of, endometriosis. Taking a pragmatic approach, with a feminist lens, two studies were undertaken: a qualitative study (Study 1) exploring the experiences of endometriosis among adolescents/young adults with a diagnosis of endometriosis; and a quantitative study (Study 2) investigating the awareness of endometriosis among adolescent girls, as well as their experiences of and attitudes towards menstruation. In Study 1, twenty-four participants aged 18-24, recruited from endometriosis support groups and social media, participated in qualitative narrative interviews. Findings showed that the symptoms of endometriosis in adolescence are wide-ranging, and significantly interfere with many aspects of life, including school, sport, social life, and relationships. Adolescents face a long delay in obtaining a diagnosis, which is contributed to by a widespread lack of awareness of endometriosis and frequent dismissals by health professionals. Drawing on Bury’s (1982) concept of ‘biographical disruption’, qualitative findings highlight how adolescents’ experiences are significantly shaped by their age and life-stage. This study makes a novel contribution demonstrating how endometriosis in adolescence is experienced as a ‘biographical threat’, to both their present and imagined life-trajectories. Furthermore, this biographical threat is contextualised by the gendered, contested, and stigmatised nature of endometriosis. Endometriosis, therefore, not only impacts many of the key aspects of adolescent life, but threatens adolescents’ lives and self-concepts as teenagers/young women, and their imagined futures as mothers/parents, intimate partners, and careered people. Study 2 used a cross-sectional survey, with 442 teenage girls aged 15 to 19, recruited from schools in the West Midlands. Findings highlighted that most (94%) adolescent girls experience period pain, which for most of these is moderate to severe; many (23%) miss school due to their periods (most often due to pain); and many do not know whether their periods are regular or typical. Only 8% of girls reported that they thought periods were positive, and there was further evidence of stigma and taboos surrounding menstruation, particularly towards discussing it with males and teachers. Finally, an overwhelming majority (92%) had no knowledge of endometriosis, and most (85%) would like to learn about it given the opportunity. The most popular method of gaining such knowledge was at school (51%). This research contributes to the evidence base pertaining to adolescent menstruation and endometriosis, and offers support for the need to provide de-stigmatised menstrual health education to all (including education about endometriosis), and to ensure an age-based approach to endometriosis healthcare and support. It also informs future research in this area