Twelve papers were included for analysis. All passed the CASP checklist (summary provided in supplementary table 1). Qualitative studies ranged from open, unstructured and semi structured interviews with 1660 participants. Six studies recruited women from community, and six recruited from attendance to clinical consultation (Table2). All studies used a described method of qualitative analysis, such as thematic coding (Table3).

We identified three key themes across all papers in the context of barriers to women accessing care for abnormal or heavy menstrual bleeding.

Health literacy is the ability to interpret, maintain, understand and use health information to make informative health decisions and follow treatment instructions.

Half of the included studies identified general health literacy as a barrier to accessing care for AUB [12, 15, 19, 21,22,23]. One American study in 2010 noted the variability in 71 women in the perception of heavy and irregular bleeding [19]. Women described heavy bleeding by the number of pads used, the quality of the bleeding, and the length of bleeding [19]. The perception of blood loss was also described to be affected by the types of sanitary protection used [12]. Women found identification of normal challenging, and if experienced for long enough, heavy or excessive bleeding became normalised and did not warrant the trouble of medical investigation. This was true in the Chicago study where the most commonly cited reason for delayed fibroid diagnosis was the perception that heavy bleeding was normal [21]. A United Kingdom study of 21 women found that explanations of heavy bleeding were varied, including the appearance of blood and how it felt. In this study, women commented how it was difficult to describe experiences, particularly to someone who did not have similar feelings [13]. Only four women in this study had open discussions about periods with family or friends. In another study, even though women described discussing the menstrual experience with others, heaviness of blood loss was not often brought up [17].

A study of Pasifika womens knowledge and awareness of gynaecological cancer in New Zealand found that there was a need for culturally appropriate, easily accessible and correct information [23]. Many women in this study had never heard of the term gynaecology as there is no literal Tongan or Samoan translation of the word [23]. Women were aware of gynaecological cancers through personal experiences and relatives or friends that were diagnosed. This is re-iterated in another New Zealand study in womens experiences with gynaecological support services where women expressed need for appropriate and timely information [18], and a United Kingdom study where half of the women who were diagnosed with uterine fibroids had never previously heard of the condition and expressed frustration they that lacked this knowledge [21].

Some women who developed their understanding of gynaecological conditions from family often had a confused interpretation of their symptoms. For example, in a United Kingdom study [20], many women believed gynaecological cancer symptoms such as abdominal size and irregular periods were due to factors such as diet, and managed themselves through avoiding certain foods:

Id probably try and sort myself out first with eating and say right, thats enough of dairy

In the same study, one woman disclosed that twins ran in her family, and that her heaviness and period pain was caused by release of two eggs during ovulation:

My nan reckons that a double egg comes from one side thats why I have been told that I get those pains [20].

In a study of women previously diagnosed and treated for endometrial cancer [22], general uterine health and Pap smears were confused. Many women were upset that their routine cervical smear did not pick up EC:

It disappointed me as long as you go for a smear test your fine [22]

This was echoed in a UK study, where eight of eleven women had considered AUB as a risk of cancer, but reassured themselves that a normal smear meant this was not the cause [13]. Whilst most women were aware of the need for routine Pap smears, confusion meant that women did not receive or perceive the correct information.

Gynaecological health has historically remained a taboo subject, yet this stigmatisation has meant that many women today are not able to openly talk about issues such as menstruation. This has resulted in many women normalising symptoms or suffering in silence.

Women may seek advice from friends to find reasons for normalisation and/or because they feel embarrassed or ashamed. For example, one woman noted:

I couldnt talk to my mum because straight away shed say to me you have to go to the hospital [22]

Years of experience with menstrual cycles meant that for some women, change in vaginal discharge or spotting was no cause for alarm, especially when these symptoms varied from day to day. Over half of women with uterine fibroids minimised symptoms, by suck (ing) it up and dealing with it [21]. Some women attributed their heavy periods to natural events, and assumed they were unlucky in having bad flow [13]:

Theres not a lot of point in reading or listening to anything, because it cant be changed [13]

Women seemed to prioritise uterine/vaginal health lower than most other health issues, and ignored significant changes:

After I got out of bed the next morning it had eased off [22].

It doesnt happen the next day so you get on with your life [22]

Women were worried to seek medical consultation as they thought they would be wasting their time:

You tend to think you are wasting their time. You are not too sure whether it is happening to everybody [12]

For those with excessive heavy bleeding, social embarrassment is a major determinant for discussing these issues, as many women provided examples of staining their clothes in public [19]. These experiences resulted in fear of social activities and avoidance of situations in which they felt stranded. For some, fear of leakage due to irregular timing and difficulties of management was a factor for women seeking seek consultation, particularly if these were increasing (which also shows how much women tolerated before they would seek help) [16, 20]. Yet for others, this held them back from seeking care:

I cancelled my doctors appointments for that reason, cause I bleed through everything. Im afraid of sitting there and going through my clothes [19]

For women who identify as Pasifika, embarrassment of revealing private parts during medical investigation was a big deterrent [23]. Many women felt uncomfortable with showing personal body parts, and find gynaecological examinations (pelvic exam) painful and scary:

I dont even like seeing myself thats a huge barrier as to why I find it tricky accessing the doctor for smears or gynaecology troubles [23]

you know they may perform a test that hurts are very scary-if I can avoid it, I do [23]

Primary health care providers such as General Practitioners (GPs) are often the first medical point of contact for women with AUB. Therefore GPs have an important responsibility to take a thorough history and listen to all concerns to provide coordinated care with specialists when needed.

Most studies highlighted communication with health professionals as a key barrier to AUB investigation. Firstly, a regular or long term health care provider were viewed as preferential as these doctors know medical and family history [15, 22, 23]. Having an established and trusting relationship with a GP was found to be a positive facilitating factor for all women:

I have been with my GP for years and he knows what has happened to me I just trust him [23]

Many women felt they could not speak to a male doctor about anything related to uterine health, and almost all women preferred to see a female doctor [20, 22, 23].

Surprisingly, eight of the 12 studies all identified normalisation and dismissal of womens concerns by the health practitioner as an important barrier to accessing appropriate care [12,13,14,15, 17, 20,21,22] and was an issue that ran through studies from 1999 to 2017. In interviews with women 612months post endometrial cancer surgery, a participant noted her symptoms were brushed off as a cause of menopause [22]. This attitude lead to women feeling reluctant to complain about symptoms, and didnt want to bother GPs about their problems [17, 20]. In another, a womans period pain was dismissed, leading her to question the genuineness of her own experiences [14]. Women felt dissatisfied when doctors did not ask about how it was affecting their lives, their problem had not been given a name or had been explained vaguely, and felt that consultation had achieved little [13]. One woman found she had to fight for treatment as her prolonged and heavy bleeding was impacting her relationship with her husband:

The woman [doctor] said these are things women have to put up with. I dont think so. I wont sacrifice my sex life [16].

Two qualitative studies which were filtered in the selection criteria for this review were based on the perspective of health care providers. Supporting the challenges described, an American study found that of 417 GPs surveyed, 87% self-reported that they always ask a quality of life question (in relation to AUB) however only 17.5% ask a mood associated question. Only 18% of GPs thought that asking about quality of life was essential in evaluating women with AUB [25]. A United Kingdom study found that even GPs had difficulty in describing normal periods. Female GPs reported that they were likely to ask details such as how many pads or tampons were used during a patients cycle. However, male GPs were less likely to go into this detail [26].

Incorrect diagnosis or inappropriate treatment was also described by women. In one study [16], several women had been prescribed norethisterone, and oral hormone treatment for their symptoms. At the time of the study (2006) GPs were advised not to prescribe this drug as it had been shown to not be effective at reducing blood loss. Worryingly, in two other studies of gynaecological cancer, many participants were given clinically irrelevant treatment following initial consultation for AUB:

I went back and forth the doctors gave me tablets, nothing still wouldnt stop [22]

Youre just being silly, youre being paranoid [15]

My GP said I had an infection [15]

The doctor at the emergency said I had gastro [15]

The use of medical jargon by gynaecological specialists was noted in a number of studies, which left women feeling lost and fearful [15, 18, 22].

Logistics of attending appointments were often noted as barriers to seeking care, for example, long wait times, availability of doctors, and the demand of family, work and social commitments.

(GP) you ring now, you get an appointment in 3 weeks [22]

It would have to be easier to get an appointment with the GP. It really is that, that is such a bloody drama. [20]

I went to one she had a baby there was another doctor, then she left the clinic as well, then Ive got doctor L. Now hes only in every Wednesday [15]

It keeps moving down the list of priorities coz something else takes precedence. [20]

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