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The Hyperemesis Action Research Project

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1 The Hyperemesis Action Research Project
Zoe Power Prof. Heather Waterman The University of Manchester. Prof. Henry Kitchener Central Manchester Hospitals NHS Trust. The Burdett Trust for Nursing. Introduce self What going to talk about today- tell a little bit about the project, tell you some of the main results and hopefully get some feedback.

2 Hyperemesis Gravidarum (HG)
Persistent nausea and vomiting of pregnancy leading to dehydration, ketonuria, electrolyte disturbance and weight loss greater than 5% of pre-pregnancy weight. (Koren et al 2002, Davis 2004, Prodigy 2005).

3 Research Questions Why do we have so many women admitted with HG?
Why do so many of the women with HG have repeat admissions?

4 Project Objectives To describe the experience of HG from the perspective of effected women. To explore with health care professionals (hcp’s) the barriers and facilitators to caring for women with HG. To identify from women and hcp’s their views on how care and services for HG could be strengthened and improved.

5 Plan of Investigation Focus group interviews with medical and nursing staff, (n= 4 groups, ave. 10 participants per group). Interviews with admitted women (n=10 women x 3 interviews). Retrospective review of medical records. n = 119 (2 years). Survey of anxiety and depression –HADS. (n=200 women, 100 women with hyperemesis, 100 controls) . Action Research group meetings (monthly). Focus groups were used to gather data from staff regarding their experience of caring for women with hyperemesis. Four focus groups were conducted in all. All focus groups were taped and transcribed. Medical and nursing staff from the gynaecology department were recruited from wards medical staff training sessions and the hyperemesis action research meetings. Due to difficulties in nursing staff being released from the wards, the majority of recruits were medical staff, ranging in grade from SHO to consultant. Questions centred around staff feelings about the aetiology of hyperemesis and their experiences of caring for and treating women with the condition. Analysis is qualitative, line by line coding. Each set of data is read carefully with reference to the research objectives. Coding is open and general and proceeds to the identification of categories. Categories were grouped together appropriately leading to the identification of key categories. Initial categories were broadened or rejected as data continued to be collected that challenged, illuminated and broadened the key categories further until data saturation occurred. Full consent was taken from all participants and written information given. No staff member was obliged to take part. Individual Interviews. The original research design for this aspect of the study was focus groups for women with hyperemesis. However, due to very low recruitment to the focus groups (only one willing participant), the design was changed to individual interviews. This method seemed to be much more acceptable to the women and recruitment improved. Women who had been admitted with hyperemesis were recruited from the gynaecology wards to be interviewed in the first and second or third trimester of pregnancy and once postnatally. The interviews were semi-structured and were digitally recorded and transcribed. Questions centred around the experience of hyperemesis and the physical, social and psychological impact of that experience on the individual, also the experience of hospitalisation and the effect of treatment in hospital and in the community. Two further second stage and three further third stage interviews are still to be completed. Survey of Depression and Anxiety in women with hyperemesis In progress. Women attending and/or admitted with hyperemesis are being recruited from the gynaecology wards and early pregnancy unit to complete a self administered questionnaire to assess anxiety and depression levels- The Hospital Anxiety and Depression Scale (HADS). A control group of women in uncomplicated first trimester pregnancy is being recruited from ante-natal clinic. The groups will be matched for age, gestation, ethnic group, parity and marriage status (control n=75, hyperemesis group n=75). Statistical analysis using SPSS will compare groups for levels of anxiety and depression. Comparison will also be made between and within groups for levels of anxiety and depression in relation to the variables, gestation, ethnic group, parity and marriage status. Retrospective Review of Medical Records :Data were gathered from medical records of all women admitted to St Mary’s hospital with hyperemesis between 1st November 2003 and 31st October Demographic data of the women admitted was gathered as well as information regarding hospital admission, treatment and discharge and infant outcome. The purpose of the review was to identify demographic patterns within the data and to investigate women’s ‘pathway’ through the system from the GP to admission to discharge (and back again) and also to identify signs and symptoms on admission, investigate treatment plans and to examine recovery. With participation in mind I’d like to do with you what I did at the beginning of each focus group- see if you come up with anything similar. Q’s- When you think of hyperemesis what sort of thoughts and images come into your mind? What if any challenges/ satisfactions have you found?

6 Results: Staff Focus Groups
Three Main Themes Unpopular-“Heart-sink” patients. Validity of admissions (disbelief in physical symptoms, actually psycho-social problems). Staff feel let down by primary care as a frontline filter. This slide is controversial, but I do have evidence for these themes, a little of which I will show. Whilst staff acknowledged that Hyperemesis could sometimes be a serious condition with potentially catastrophic outcomes, it was felt that this was rarely the case in practice and that the majority of cases seen in wards and departments were at the mild end of the spectrum, the majority of women did not require hospitalization. It was felt by some, that many of the women who were admitted to hospital were admitted unnecessarily and that their admission was a wasteful use of resources. There was a lot of repetition of work due to repeated tests looking for a cause of symptoms, especially when women were readmitted. Sometimes staff felt this was due to the patient themselves being under motivated or inadequate in their ability to manage their own symptoms. Sometimes they felt there was actual deception, where patients faked their illness to garner sympathy and attention or a “rest” from homelife. Many staff reported feelings of frustration and sometimes helplessness in caring for an “awkward” group. Some senior house officers reported feeling forced into admitting patients at their own insistence rather than on their own clinical judgment.

7 Unpopular group “Some of these ladies actually believe the hospital is a 5 star hotel, where you can just come and chill out and get taken care of and will have the nurses doing everything for them, get me this get me that. Too lazy, won’t stand up and get something from the cupboard. Some of them have this notion that that is what the ward is supposed to be and these are the type that will keep coming back with vague symptoms and no matter what you do.”[dr1sfg1]

8 “Heart-sink” patients (time-wasters)
[2fg2] – “It’s a bit of a waste of resources, you’re just doing it to cover yourself. You could use the bed for something else, but if the patients very insistent that they want to come in, then it’s very difficult to do otherwise.” [4sf2]- “If they bother to wait 3 hours in A and E and then for you, another 2 hours they have a problem.” [2sf2]- “But it might not be hyperemesis. It seems quite an inappropriate way to manage them, but I don’t know how else you can do it.”

9 “I think, we actually have jobs that are terribly, terribly satisfying because we do things and we see results and it’s that continuity that makes your job great and we don’t get any of that from these, do we? I don’t know maybe we should just dump it onto obstetrics? Maybe if you saw them at 20 weeks and they were getting better and they said oh thank you, you were so good when I was vomiting and I now feel great thank you, maybe that would then reinforce the care that we give.”[carg1]

10 Disbelief “Most of it’s psychological anyway.” [4fg1]
“I’d say you wouldn’t see a true hyperemesis person that often, would you? Really, a genuine.” [1fg5] “Some women will actually starve themselves and induce a form of hyperemesis to get away from their home circumstances and they are inappropriate referrals to the ward area. So, when they are there, they are non-compliant, because they see that if they get better they are going back to the same social circumstances.” [1fg4].

11 Psycho-social admissions
“ Many of us perceive that many women admitted have no support at home and there must be many more people out there who are equally as sick, but have a supportive family. They can sit and rest and their family will look after the existing family, do the ironing and cook the dinner. Many come from unsupportive families. The reason they come back so quickly, is because, as soon as they get home, it is “back in the kitchen and make my dinner”. A few we have suspected are in an abusive relationship.” [dr15sfg3]

12 Ineffective Primary Care
“Sometimes GP’s who refer ladies saying they are very dehydrated haven’t really tested any urine or taken their blood or even tried anti-emetics and they’re sent as an urgency and almost always admitted.” [nu2sfg1] A regular theme in focus group discussions was the inappropriateness of a hospital setting for care of some of the patients who were admitted, also the perceived need for a stronger input from primary care in the management of hyperemesis patients. Current provision was felt to be ineffective as a frontline able to filter patients before reaching the hospital system. Discharge provision was also identified as inadequate in preventing readmission. Overall the main concerns of staff seemed to be the feeling that often patients were admitted inappropriately, sometimes at their own insistence. This was sometimes due to a lack of frontline primary care and some staff felt frustrated and let down by this. They felt resources were being wasted. Unfortunately this also appeared to contribute to a negative feeling towards hyperemesis patients, which the staff recognised in themselves. These negative feelings were further exacerbated by the view that some patients were either lazy or inadequate and that was why they were unable to manage their own symptoms of nausea and vomiting (which are a normal part of pregnancy).

13 Results: Interviews with women with Hyperemesis
Broad theme of “symptoms.” Managing life with hyperemesis. Hospital as a “cycle breaker” and “burden lifter”. Disbelief and invalidation as a person worthy of medical attention. Within Case and between Case Consistency Within cases (same woman, different time) consistency has been high, the benefit of hindsight does not appear to have changed views or feelings very much. Between cases there was also much consistency, although not uniformity, of opinion.

14 Symptoms “I felt that I was dying. I was completely dry, I couldn’t even sip water, I couldn’t even swallow, I had no saliva. I think, the nausea and the vomiting gave me dehydration, and together made me… because of dehydration I couldn’t even stand-up myself, I couldn’t do anything. I was simply feeling I was dying and the feeling of nausea, and nothing to come out, I was vomiting, but there was nothing to come out.” [pt1/2] Patient descriptions of symptoms were usually vivid and heartfelt. In many cases the women expressed appreciation at being able to talk about their experiences and would ask for advice and information.

15 “Anything I’ve eaten since Sunday has just been coming out
“Anything I’ve eaten since Sunday has just been coming out. So yesterday, all day, I just didn’t eat anything. You’re starving as well, which is funny, because you want to eat as well, but you can’t keep it in. and the vomiting makes you feel worse, because it makes you feel so weak and I start to feel very cold, just freezing, so it’s not nice at all.” [pt8/1]

16 Hospital as a Burden Lifter and Cycle Breaker
“I think I needed to come in and get that… it is kind of a control thing because it does spiral out of control and you can’t get it back by yourself really … and it’s a relief even yesterday when I was sat in the waiting room and I was sick in the bin because I felt really terrible, even just kind of being here and knowing that there are people that are going to kind of look after me and take me serious and stuff does make a huge difference.” [pt9/1] The main benefit for patients of hospital admission was the amelioration of symptoms. IVI therapy was felt to be of particular benefit. The perceived value of anti-emetic therapy varied from patient to patient with some gaining considerable benefit and others none at all. For those whom anti-emetic therapy was beneficial, different drugs and different routes and preparations seemed to have varied success. A common comment was that benefit seemed to wear off after prolonged use over a number of days or weeks. Prochlorperazine was most often cited to do this. Benefit to well being of having the “burden” of “never ending” symptoms lifted- respite, also, the importance of hospital admission “breaking the cycle” of the relentless, downward spiral of nausea, vomiting and dehydration.

17 Disbelief and Invalidation
“I think the doctor wasn’t too good to be honest. He was very harsh, he was just putting injections all over me, quite roughly and it was like he wouldn’t believe what I’m saying, that I’ve been sick and everything, literally. He was just like, nothing’s wrong with you and I was like…, that day I was so bad, I couldn’t even talk properly, so I felt a bit terrible. So that was just the thing, I’m not going to lie about it, nobody would if your not well, so that was a bit funny.” [pt8/1] Quite a common, although not universal theme was the psychological impact on women if they felt they were disbelieved or dismissed. Where women had not met with any disbelief the issue validation didn’t seem to come up, but where disbelieving or dismissive attitudes had been experienced, the negative impact on their mental well being and coping abilities appeared to be of quite considerable concern to women.

18 Conclusions - Staff Hyperemesis patients a generally unpopular group.
Hyperemesis believed by staff to have a significant psycho-social aspect. Staff feel unsupported by primary care in hyperemesis management.

19 Conclusions - Women Women describe severe sometimes debilitating symptoms. Women tend to come to hospital when symptoms become un-manageable (cycle breaking). Women sometimes find hospital staff dismissive regarding the severity of their symptoms.

20 Why are women with HG an unpopular group?
Why are these women disbelieved? “True Hyperemesis”? Is HG stigmatised?

21 Changing Practice “We’ve really got to try to like them” [1fg7]
Understanding patient experience Highlighting problems/ issues Integrated Care Pathway HIS assessment questionnaire-NIHR funded RCT. Publications for dissemination and peer review

22 Acknowledgements Prof. Heather Waterman. School of Nursing, Midwifery and Social Work, University of Manchester. Prof. Henry Kitchener. School of Medicine University of Manchester / St. Mary’s Hospital, Central Manchester Hospitals NHS Trust. Pam Kilcoyne. Modern Matron Gynaecology, Central Manchester Hospitals NHS Trust. Wards SM10 and SM9, Central Manchester Hospitals NHS Trust. The Burdett Trust for Nursing.

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