Through the analysis and synthesis of the interview data, in conjunction with the SEM model, the following three themes and ten sub-themes (Table 2) were extracted. These themes collectively encapsulate the illness experiences of patients with moderate to severe PMS and delineate the genuine and specific requirements for perimenopausal health management strategies.
Theme 1: Cognitive Limitations and ReducedCoping Capacity
Subtheme 1: aging and confusion
The cognition of menopausal syndrome in patients with moderate to severe PMS is relatively shallow. Under the general trouble of menstrual disorders, mood disorders, sleep disorders and other symptoms, its body image is characterized by aging, such as "irritability" and "no longer beautiful", rather than chronic diseases. Some patients think that PMS is a normal change in the perimenopausal stage, but it is customary to use the word "menopause" to obscure menopausal syndrome. "So, the skin starts to dry out and we lose collagen. Plus, our memory goes downhill. Some of my colleagues had a bit of a period in their forties and they said it was better to end it sooner. Because we're so busy with work and we've got kids anyway, there's no point in worrying too much about these things" (H1); "I don't see it as a disease. I think it's just a phase people go through after they hit their forties. You can't stay beautiful forever. Each age has its own charm. The key is to accept it and understand it"(H6)
Simultaneously, patients with moderate to severe PMS frequently experience nonspecific symptoms such as bone and joint pain and paroxysmal palpitations, yet they are perplexed and unable to comprehend the manifestation of these symptoms. Additionally, most participants exhibit limitations and misconceptions regarding the normal age of menopause. Some even hold the belief that "the later the menopausal event occurs, the better" and "it is ideal to menstruate until old age." "I really feel that it doesn't feel normal to me! I even asked my friend yesterday. She's still having periods at 50 and she also has insomnia, but she doesn't have my palpitations. Some people think it's normal. They say menopause is just like that, but I feel like something's not right, don't you think? How can palpitations be normal? I'm not just flustered, I'm the kind of scared that feels like I'm in danger" (H5); "I’m going crazy, I can't sleep at all, and I've got joint pain. My feet feel weak and my knees hurt, but I don't think these should count, right? It's like I've had this before" (H2)
Subtheme 2: self-regulation and health monitoring
Self-regulation by most patients with moderate to severe PMS is pivotal in the management of PMS health. As stated, following:
"I reckon personal adjustments are key. If you're feeling down, you might start noticing all sorts of niggles. And mentally, you need to give yourself a nudge, face up to it, and tweak things. Realize that even docs can only do so much to help" (H6); "Honestly, I would say that women in their 30s should start getting clued up. Maybe if you prepare early, you won't freak out so much later. Everyone's symptoms are unique, so it's wise to know what's coming" (H5)
PMS patients perceive that participation in a systematic health management program can motivate them to pay greater attention to PMS and other health issues. As in the following narrative: “I'm cool with that. I can keep tabs on it yearly, and I've got it covered in my mind” (H12); Other participant emphasized furtherly: “I'm all for proper health management for menopause. If there's a thorough, tiered approach, it can really help us figure out what's going on and what we need” (H5)
Subtheme 3: delayed treatment
Participants with moderate to severe PMS often encounter a prolonged waiting and hesitation period during the process of seeking medical treatment, and the delay in seeking medical attention is pronounced, which may be one of the significant factors contributing to the exacerbation of their symptoms. "I'm really snappy. Sometimes, I just don't know what to do. I'm clueless when it comes to picking a doctor. At night, I can't get comfy, my leg's all over the place. Even when I pinch it, I still don't bother seeing a doctor" (H3); "I wanted to get checked out earlier, but work got in the way. I'd been meaning to get help for ages, but my job kept pushing it back. The everyday hassles just kept piling up, so I finally had to head to the hospital for insomnia and others" (H5)
Additionally, one patient was readily influenced by the ambiguous and indifferent attitudes of family members during her hesitation period of seeking medical treatment. She tended to default to the belief that PMS is not associated with health threats, thereby neglecting her own discomfort symptoms: "I didn't think about going to the hospital back then. I told my husband about the dryness and bleeding, and he brushed it off. He said I could just pop into the clinic for a quick check, and it wouldn't kill me… After I took the meds and seemed to have nothing wrong, I just let it slide and never went back to the gynaecologist" (H7)
Subtheme 4: divergent expectations
Due to the unclear risks associated with menopausal hormone therapy and the varying personal expectations of treatment outcomes, participants tended to favour non-hormonal treatments or guidance on healthy lifestyles in their subjective preferences when making treatment decisions. "If I used hormones, I might think more about it. I might think: Why use hormones? What do you want? Because I think what kind of condition do you want me to recover from with hormones? Well...To my mind, I'm not too eager to fully recover." (H6)
Theme 2: Family Silence and Disappearing Workplace Care
Subtheme 1: ambiguous information dissemination
Because menopausal syndrome is closely linked to female reproductive function and organs, the primary sources of health information for participants are female relatives and friends. During the exchange of information, patients and their relatives and friends often harbour feelings of shame and taboo regarding PMS, which casts an ambiguous and vague hue over the dissemination of PMS health information.
"My husband's sister was anxious, and this happened to her at that time… I also accompanied her here to see a doctor, but a few years ago, my body didn't have these conditions at all, and I didn't understand (her) situation… I also have a friend who also had these situations. She also told me that she was very serious and even depressed. She said that she actually didn't know how to be anxious. We were all confused why we get it?" (H5); " There is no one to say in my hometown. I quietly asked my sister-in-law two years ago, and asked her what the process of menstruation was like. She said it was gone a little bit, a little bit anyway. Didn't say anything to me." (H7)
Subtheme 2: feeling of pain, isolation and helplessness
Patients interviewed considered both PMS and perimenopausal changes to be "private" and should not be discussed with others: "It's all about self-adjustment, because I consider these personal issues, and I don't want to or dare to tell others." (H2).
One interviewee exhibited significant emotional fluctuations upon hearing questions about family members' care for her. Despite her outward expression of indifference, her suddenly raised tone and faster speech conveyed the anguish of feeling ununderstood and uncared for: "I don't need to talk to others, just adjust it myself. Deal with your own affairs. These problems have nothing to do with your family, so you don't need to increase the burden on others." (H10)
Simultaneously, some interviewees felt they lacked the attention and companionship of their partners, and their inner distress sought an outlet, leading to a mix of "demands" and "expectations." One participant sighed helplessly while sharing: "Well, he simply advised me to rest more… If I expect him to be considerate, it might tire him out. It's good to care, but you can't ask for too much…" (H12)
Another clearly emphasized that the family care she received was insufficient to compensate for the trauma she experienced in family life, causing her psychological emptiness during the transition period to become more pronounced: "Honestly, not enough… Officially, due to the lack of family support or the influence of my childhood family environment, my slight depression is influenced by my family of origin. Therefore, after entering menopause, this feeling is even stronger. I think no one would deny that coupled with some private and unspeakable secrets, I can't talk to my husband, it just only make me more depressed and anxious." (H4)
Subtheme 3: workplace neglect and gossip
Currently, within China's workplace environment and social and cultural context, our participants still do not receive sufficient attention, understanding, and empathy. A teacher working at a medical university shared her sentiments with us: " Even though we work in a medical university, where you'd think it would be relatively easy to access this information, menopausal syndrome doesn't seem to be specifically highlighted for public awareness. I feel that the care for women in society now only remains at a relatively broad level. Perimenopause isn't regarded as an important and special period like pregnancy and childbirth, and we don't feel much attention." (H1) Another interviewee's perspective echoes this sentiment: " I would like to point out that the workplace, unless it's a particularly supportive one, otherwise I don't believe it pays much attention to menopausal syndrome, and the workplace might not give much thought to us during this period. Well, that’s true." (H2)
Furthermore, the public's prejudice and stigma towards menopausal syndrome have resulted in significant public opinion pressure on patients with moderate to severe PMS in the workplace. " It's less acknowledged. Seriously, society pays less attention and understanding to this stage. Moreover, I feel a kind of pressure, fearing that my colleagues and superiors will think I have something wrong all over, and I'm unsure what others might think of me or gossip about. Then I suppress myself, become very irritable, and worry that others will think I have… a terminal illness." (H5)
Theme 3: Misaligned Healthcare
Subtheme 1: fleeting communication
Due to the scarcity of medical resources and the high volume of patients, the medical atmosphere is characterized by tension and urgency during the diagnosis and treatment process. This environment prevents patients from engaging in in-depth communication with their attending physicians about their condition and personal health concerns, thereby exacerbating negative emotions such as "helplessness" and "hesitation" among patients with moderate to severe PMS. The following voices of several interviewees reflect this reality:
"The doctor doesn't pay enough attention to us, yet… They're always in a rush. They just ask what the issue is, then write out a prescription. Oh dear, it feels very assembly-line." (H8)
" The community doctor just tells me what to watch out for, and that's it. If there's any treatment (discussion), they don't go into specifics. Yes, the doctor didn't elaborate." (H5)
" How can the doctor find the time to listen to you and explain it in detail? Let alone, they've already written out a prescription. Can I even stay in the consulting room? Sometimes I really feel helpless, really." (H3)
Subtheme 2: absence of health promotion role
Owing to the insufficient transparency and openness of current publicity methods employed by medical institutions, participants reported difficulties in fully accessing professional health information. Among the existing social health service initiatives, perimenopausal women and PMS patients are infrequently targeted for intervention.
"The current health lectures in the community mainly target older people, and there are no specific projects for menopausal health or specialist clinics. It feels like no one has the time to support us. Maybe it would be hopeful to focus on this in the future." (H2);
"Well, I would say, if the hospital had those promotional materials, I would definitely take them, but I don’t know where to find them. Nobody knows, I guess." (H7);
" It seems to me that free clinics or consultations on menopausal syndrome are quite rare, and the information provided by hospitals is not clear or complete enough. Often, we don’t even know these activities exist." (H12)
This lack of focus contributes to the challenges faced by moderate to severe PMS patients who are aware of the need for medical treatment but struggle to obtain primary healthcare services and effective referrals. Consequently, this situation has become a significant contributing factor to the delays in the medical treatment of PMS patients.
Subtheme 3: enhancing management plan specificity and systemization
Participants in the interviews indicated that the current management measures implemented by medical staff are overly structured and universal, lacking the necessary flexibility and adaptability. These measures do not adequately consider the unique circumstances and individual differences within specific management dimensions, which adversely affects patients' willingness and compliance with health management intervention strategies: "If you ask me, after I realised that her advice was not specific, I lost interest in it. The focus needs to be improved… When seeing a doctor, I expect a professional medical plan that includes exercise, diet recommendations or something else. It would be helpful if the doctor could specify what we can and cannot eat, providing more detailed and targeted guidance" (H1); "The way I see it, doctors ought to take the initiative to offer advice, instead of we ask for it." (H2)
Given that the symptoms of perimenopause syndrome (PMS) involve multiple physiological systems, purely structured health education may fail to account for the overall health status of PMS patients. Those with moderate to severe PMS report a need to understand their current disease risk levels. It is essential for medical staff to develop transitional management plans for perimenopause based on risk assessment results, with a greater emphasis on mental health management.
"I think it is still necessary to carry out an overall management, breaking down specific symptoms and addressing them based on their severity. Serious and mild symptoms require different management approaches, right?" (H5)
Another participant also emphasized that: "Personally, if further improvement is needed, I think it would be beneficial to incorporate psychological assessments, similar to offering psychological counselling. Psychological support and guidance from you are very important for those of us experiencing emotional issues. Thank you." (H6)