Bridging different realities – a qualitative study on patients’ experiences of preoperative care for benign hysterectomy and opportunistic…

The theme Bridging different realities, describes the complexity of a woman in deciding on hysterectomy, and in some cases salpingectomy. It also describes the womens interactions with the healthcare system and the difference between the health professionals and the womens perceptions of the situation, as perceived by the participants. The theme, categories and subcategories are presented in Table2. Each subcategory is presented by a summary of the findings, and by supporting quotes from the participants in italics.

This category has four subcategories Defining womanhood in removal of the uterus, Being accomplished - an obstacle for own health, Differing aspects on the significance of menopause and Advocating for equality and just healthcare together compiling a description of a contemporary womans view of herself and her perspectives on womens health in awaiting surgery.

The participants described varying perspectives in the significance of the uterus. For some it was considered a vital part of being a woman, describing an intense longing to keep the body intact, while for others it was the uterus function which was essential. For the latter, when childbearing was completed hysterectomy could be performed without grief, although it raised thoughts about the finality of the reproductive phase.

My biggest issue facing it wasnt the surgery itself, its what defines me as a woman [the uterus]. (FGD 4)

For me it is not a big issue because it [hysterectomy] is something I have been striving towards. Since Im done having children and it [the uterus] is just causing me problems and I dont need it. (FGD 5)

The participants shared a desire to not cause inconvenience for others because of their own health issues, both related to the symptoms which were the indication for surgery and the expected convalescence period. It was described women postponing both the consultation and the surgery to manage work and social obligations. They also described a sense of guilt towards their partner and colleagues, and in relation to these matters also attempts to keep up the facade.

When you work you have to be positive, even if youre not. Its added pressure, I can sit on the toilet and cry like a baby. Because I cant cry in front of my colleagues. (FGD 5)

The need to be accomplished also presented itself in how the participants experienced contacts with healthcare, with a desire to be prepared before gynecological examination, feeling inadequate for not understanding the reason for the symptoms and blaming themselves for not receiving sufficient information.

They [the doctors] havent talked about the other issue [the fallopian tubes]. But sometimes I think, should I have asked that question, should I have thought about it? (FGD 6)

A multifaceted image of the significance of menopause was portrayed by the participants, ranging from the convenience of not menstruating, a view of menopause as natural and inevitable, and a step towards becoming a more knowledgeable woman.

I think Im going to be a wise woman. I hope Im on my way to becoming one Im very grateful to have reached the age Im at and that I dont have to be young today and fight against all the ideals. (FGD 4)

Opposing these positive perspectives were the attempts to avoid thinking about menopause, due to a perception of menopause as a step towards growing old and a negative image of women after menopause.

I think Im going to feel old all of a sudden Im thinking of my mother, she went through it [menopause] when she was 50 and she became a different person. The woman she was, was no more. All thats left is an old hag. (FGD 2)

Some participants conveyed frustration over a perceived lack of focus on female issues in society as well as in medicine, stating that research related to womens health is insufficient and that this is due to a lower priority.

They [scientists] write what we know today. Right now, we dont know if the fallopian tubes have any other function. Maybe we would have known more if we had done more research on it. (FGD 4)

There was a determination by participants to demand proper care and not accept unnecessary suffering. The frustration was not only directed at healthcare and the scientific community, but also at women in general, proclaiming a lack of knowledge and commitment from women in the society in regard to womens health.

Its [the lack of knowledge] a little shameful. Why dont women know? Why dont we talk about it? (FGD 1)

This category includes four subcategories Struggling with a failing body, Body image as a preconception of function and dysfunction, Cancer as a present fear or a distant reality and Perspectives of health when experiencing a medical condition describing the intense suffering many women experienced before being accepted for surgery, and how their preconceptions and fears influenced their perspectives.

Many participants described profound effects on everyday life from their symptoms, often for an extended period of time, where measures from the healthcare services were insufficient. On some occasions own health had been put aside due to economics where being on sick-leave was considered too expensive to be an option. Pain, heavy bleeding and feelings of hopelessness were frequently described, all combined into a perception of a struggle.

The period for me is a nightmare, war, giving birth. I feel really bad when I have my period, I barely go outside. I dont dare to go outside. (FGD 5)

It doesnt work. I dont even think Im going to be alive for another 15 years if it is going to be like this. (FGD 6)

Insufficient knowledge of anatomy and function of female genitalia as well as understanding of their diagnosis emerged in all groups. A consequence of this was an uncertainty of what to expect after surgery. What will fill the space after the uterus is removed?; Where does the penis go during intercourse?; What is the difference between ovary and fallopian tube?, were questions that were posed. The surgery was seen as something necessary but out of control.

When we talked about what to remove, I said take out everything that is broken, because its just a mess in there. (FGD 6)

In some participants the use of common gynecological diagnoses sparked fear of cancer, on some occasions relieved by more information from the doctor, in others the fear persisted.

That word sounds dangerous Cyst, then its like cancer. (FGD 1)

Gynecological malignancies were viewed as a diffuse entity, for some the Pap smear was perceived as a screening method for all. Existing fear influenced the view on the extent of surgery. Participants with a fear of cancer wished to remove what was possible while the participants where cancer was perceived as distant wished for individually adapted surgery.

You can have cancer anywhere so why [worry about] specifically ovarian cancer? (FGD 4)

Health as a concept was described as being content with life and to be present and supportive towards family, irrespectively if there was an ongoing medical condition. Some participants emphasized the need to talk about health issues with close relatives and stressed the need of a functioning sexual relationship with their partner to stay healthy.

Contentment really can summarise it all. If Im happy with what I get and have gotten in life and have an idea that it is going to continue So not in terms of health and sickness or rich and poor, but being content. (FGD 4)

The four subcategories Negligent and impersonal healthcare, Supportive and available care, Balancing gain for yourself or future patients when participating in a study and Wishing for optimal outcome but fully dependent describe the difficulty in navigating the healthcare system where a dependency on the health professionals is central.

Several participants described a struggle to be taken seriously, and that repeated contacts with the clinic was required to get a date set for surgery. A feeling of being powerless in relation to the healthcare system was described; on some occasions with the perception of the clinics being in control of the situation but not conveying the information to the patients, in others distrust and a perceived need to monitor or intervene in the process, to be certain to acquire proper treatment. The healthcare provided was perceived to be in part dependent on the ability of the patient or relatives to navigate their way through the system.

Ive come to think of [how difficult it must be for] old people who need to contact healthcare when not doing too well, when I think its hard, as someone whos in a pretty good shape. (FGD 4)

I had more personal contact and information [previously] Today everything is so computerised. It seems like the personal contact is disappearing, and your faith in the system disappears along with it. (FGD 6)

The [physicians] pager beeped constantly and the phone rang and it was somebody [patient] who wasnt doing so well, and it was like there were more urgent matters than a woman who might potentially have surgery. (FGD 5)

As a contrast to the previous subcategory, satisfaction with personal contacts and information provided by healthcare professionals were also reported. Receiving information by mail and filling out questionnaires online was stated to give a sense of trustworthiness and participants suggested that more information could be given electronically. The participants who were aware that routines could differ between clinics accepted it and decided to trust local recommendations. A shared decision-making with the gynecologist alleviated the decision and the wait for surgery.

You have to trust who youre talking to, Im sure there is a difference in opinions. (FGD 1)

[We should be grateful] that we live in a country where you can get help with these things, and you have people who communicate with you. (FGD 4)

The question to partake in a clinical trial was met with ambivalence by some participants. The necessity of research was understood but participating in a study meant accepting an uncertainty of what could be the best approach. When informed of an ongoing clinical trial it was perceived difficult to understand; words like randomisation were not known by the general public, and lottery giving a negative association.

Its good if you can participate in a study to help others, but at the end of the day you are the one you want it to work out for. (FGD 3)

Ive given consent [to participate in a clinical trial] ... What happens, happens. Itll contribute to science anyway. (FGD 2)

The participants reported a wish to receive individual recommendations regarding surgery, in some occasions to make an informed decision by themselves, and in others to directly follow the recommendations of the gynecologist. Some participants described being asked about removing their fallopian tubes although the gynecologists were not able to answer questions about the potential pros and cons. Others had not received the question on removal of the fallopian tubes and were unknowledgeable about what was planned, apart from hysterectomy. On many occasions the participants did not know the difference between fallopian tube and ovary, limiting the possibility of making a decision. The attitude towards opportunistic salpingectomy differed greatly, from removing only what is necessary to alleviate the symptoms, removing all parts possible or surrendering the decision to the gynecologist. A shared experience was that the consultation had been limited by short time and/or lack of information which impeded the ability to make an informed choice.

I dont have the knowledge and cannot advise myself about pros and cons, if you say so, [give recommendations] then I have to rely on the professionals. (FGD 5)

I want to book another appointment and talk some more [about the surgery]. It wasnt enough time [the previous visit] I dont know only 15-20 minutes. (FGD 3)

This category includes 5 subcategories; Information received and information perceived, Accepting uncertainties or requiring more information, Finding support or supporting in social networks, The burden of waiting and Accepting risks and trusting relief, and describes the continuous processing of information and decisions until the time of surgery.

In many cases it was unclear for the women when the surgery would take place, what the surgical approach would be, and what could be expected during recovery. The participants could not state if they had been presented with the information or if they had not perceived what had been said. There was an awareness of the individual limits to what can be perceived, with some participants bringing the partner to the consultation as an aid to remember. To improve the processing of information there was a desire for information as pictorial material in addition to written information to bring home.

Several of the participants described a lack of information regarding surgical risks and the expected symptoms in recovery. Others were content with the information received, concerns regarding sexual function after surgery was addressed and they were confident that they would receive additional information if needed. There was an acceptance that the information given must be balanced not to cause unnecessary concern.

She [the physician] said the uterus. She probably described it but I cant remember. She said what they were removing and how to stitch it up it was hard to envision. I cant really remember what she said, thats what I got from that consultation. (FGD 5)

It comes naturally for a doctor and the anaesthesiologist they do this all day. But it is not every day that I do this... Now I was a bit lost and a bit sad and all that, a bit in shock. (FGD 6)

For many participants multiple questions arose after their consultation, and their perceived trust in the health professionals affected how the participants handled their insufficient knowledge. Some were confident of receiving more information at a later stage and did not actively seek further information. Others avoided searching, out of fear of becoming more worried, but many participants described searching for more information online. Searching for more information gave varying results, some became relieved, while others became increasingly afraid where even different wording at different healthcare-websites was a cause for concern. This unaided gathering of information led to repeated phone-contacts and consultations at the clinics responsible for the participants.

I guess Ill get more information later on. (FGD 6)

You read things [information online] you dont know enough about and then you interpret it in a certain way and get worried and scared. (FGD 3)

The participants described their social network as essential in managing the wait for surgery, often asking other women, who had experienced gynecological surgery, of their experiences. Some chose to bring their partners to the consultation as an aid to understand and remember the provided information but some to enable the partner to ask their questions and alleviate their worries. Many of the participants decided to partake in this study to meet other women in the same situation for mutual exchange.

My husband has been there [at the consultation], because when I get stressed out, I dont know what Im doing. He drew a picture for me the other day about what they said and what they meant about the fallopian tubes, so he had to explain it to me. You are not in a condition [to understand] even if you want to. FGD1

I wanted him to be there the whole time and hear the same information as me, and get to ask his questions. FGD4

An intense fear of what was to come was described, fearing both surgery and its potential consequences. Abstaining surgery was not seen as an option due to profound suffering from the symptoms and fear of what might be causing them.

Then Im going to die but it doesnt matter, anything is better Ill do whatever it takes anyhow, it doesnt matter if it is frightening or not. (FGD 2)

Fear was reported due to unknown surgical approach, unknown time to surgery and uncertainty in how they would be contacted when it was time for surgery. Fear of anaesthesia and fear of a difficult convalescence where the information given regarding time to recovery was expected to be understated.

The time waiting for surgery was in some participants mostly anticipation of improved quality of life, a trust in a functioning sexual relationship with the partner after surgery, and the end of suffering. There was a proclaimed trust in the healthcare to make the right decisions but also an acceptance that there could be negative side-effects to the surgery, and these risks were acceptable. It was expressed a trust in hysterectomy being a routine procedure, and a confidence in their own body to handle recovery, but also with an acceptance that healing might take some time.

I put my life in their hands and they see whats needed and what isnt. (FGD 2)

There is a risk of prolapse and everything that goes along with that, but I cant have it the way it is either. (FGD 5)

Im so happy, Im so happy. I feel like the luckiest woman; Im getting rid of it [the uterus]. (FGD 5)

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