The Hyperemesis Action Research Project

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.

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).

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.

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]

13. Results: Interviews with women with Hyperemesis • Broad theme of “symptoms.” • Managing lifewith hyperemesis. • Hospital as a“cycle breaker” and “burden lifter”. • Disbelief and invalidationas a person worthy of medical attention.

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]

15. “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]

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]

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 MedicineUniversity 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.