Munro Courtney Bree, Flanagan Madeline, Moussaoui Dehlia, Kite Lauren, Grover Sonia R
Murdoch Children's Research Institute, Parkville, VIC, Australia.
Department of Paediatric and Adolescent Gynaecology, The Royal Children's Hospital Melbourne, Parkville, VIC, Australia.
Womens Health (Lond). 2024 Jan-Dec;20:17455057241303003. doi: 10.1177/17455057241303003.
Despite a high prevalence, menstrual issues are often normalised or trivialised and undermanaged in young people (YP). Uncontrolled dysmenorrhoea and heavy menstrual bleeding have a vastly negative impact on the quality of life of YP, especially when these issues are compounded by the social and emotional complexities of navigating adolescence.
The Longitudinal Study of Teens with Endometriosis, Period and Pelvic Pain (LongSTEPPP) project is a 5-year study aiming to understand factors that contribute to endometriosis, period and pelvic pain in YP and to examine long-term outcomes.
Focus groups (FGs), held as part of co-design, sought to ensure that the perspectives and concerns of YP and their parents were incorporated into the longitudinal study design.
YP and their parents were invited to participate in an online FG after completing a survey about periods. The online survey was also part of the co-design of LongSTEPPP and was advertised primarily through social media channels.
Four FGs were held, including three with YP ( = 12) and one with parents ( = 3). Major themes to emerge were (1) YPs experiences, including the physical and psychological impact of pain and bleeding; (2) pain and pain management; and (3) education. Mental health burden was significant on YP, with some reporting suicidal ideations. YP and their parents reported a lack of knowledge and awareness about menstrual issues among societies, healthcare professionals, and schoolteachers.
This study identified the substantial impact of periods on YP, and their parents' lives, the challenge of navigating a chronic pain condition in adolescence, and the lack of awareness in society and among professionals. Through the co-design model, these findings have informed the longitudinal study to ensure that it will adequately measure the concerns of YP and their parents.
尽管月经问题普遍存在，但在年轻人中，这些问题常常被视为正常现象或被轻视，且未得到妥善处理。不受控制的痛经和月经过多对年轻人的生活质量有极大的负面影响，尤其是当这些问题因青春期的社会和情感复杂性而加剧时。
青少年子宫内膜异位症、经期及盆腔疼痛纵向研究（LongSTEPPP）项目是一项为期5年的研究，旨在了解导致年轻人患子宫内膜异位症、经期及盆腔疼痛的因素，并研究长期结果。
作为共同设计的一部分进行的焦点小组讨论，旨在确保将年轻人及其父母的观点和担忧纳入纵向研究设计。
在完成一项关于经期的调查后，邀请年轻人及其父母参加在线焦点小组讨论。该在线调查也是LongSTEPPP共同设计的一部分，主要通过社交媒体渠道进行宣传。
共进行了4次焦点小组讨论，其中3次是与年轻人（n = 12）进行的，1次是与父母（n = 3）进行的。出现的主要主题包括：（1）年轻人的经历，包括疼痛和出血对身体和心理的影响；（2）疼痛及疼痛管理；（3）教育。心理健康负担对年轻人影响重大，一些人报告有自杀念头。年轻人及其父母表示，社会、医疗保健专业人员和学校教师对月经问题缺乏了解和认识。
本研究确定了经期对年轻人及其父母生活的重大影响、在青春期应对慢性疼痛状况的挑战以及社会和专业人员缺乏认识的问题。通过共同设计模型，这些发现为纵向研究提供了参考，以确保该研究能够充分衡量年轻人及其父母的担忧。
