Zoe PowerZoe Power

Prof. Heather Waterman Prof. Heather Waterman

The University of ManchesterThe University of Manchester..

Prof. Henry KitchenerProf. Henry KitchenerCentral Manchester Hospitals NHS Central Manchester Hospitals NHS

TrustTrust..

The Burdett Trust for Nursing.The Burdett Trust for Nursing.

The Hyperemesis Action The Hyperemesis Action Research ProjectResearch Project

Hyperemesis Gravidarum Hyperemesis Gravidarum (HG)(HG)

Persistent nausea and vomiting Persistent nausea and vomiting of pregnancy leading to of pregnancy leading to dehydration, ketonuria, dehydration, ketonuria, electrolyte disturbance and electrolyte disturbance and weight loss greater than 5% of weight loss greater than 5% of pre-pregnancy weight.pre-pregnancy weight.

(Koren et al 2002, Davis 2004, Prodigy 2005).(Koren et al 2002, Davis 2004, Prodigy 2005).

Research QuestionsResearch Questions

Why do we have so many women Why do we have so many women admitted with HG?admitted with HG?

Why do so many of the women with HG Why do so many of the women with HG have repeat admissions?have repeat admissions?

Project ObjectivesProject Objectives

To describe the experience of HG from To describe the experience of HG from the perspective of effected women.the perspective of effected women.

To explore with health care professionals To explore with health care professionals (hcp’s) the barriers and facilitators to (hcp’s) the barriers and facilitators to caring for women with HG.caring for women with HG.

To identify from women and hcp’s their To identify from women and hcp’s their views on how care and services for HG views on how care and services for HG could be strengthened and improved.could be strengthened and improved.

Plan of InvestigationPlan of Investigation Focus group interviews with medical and nursing Focus group interviews with medical and nursing staff, (n= 4 groups, ave. 10 participants per staff, (n= 4 groups, ave. 10 participants per group).group).Interviews with admitted women (n=10 women x Interviews with admitted women (n=10 women x 3 interviews). 3 interviews). Retrospective review of medical records. n = 119 Retrospective review of medical records. n = 119 (2 years). (2 years). Survey of anxiety and depression –HADS. Survey of anxiety and depression –HADS. (n=200 women, 100 women with hyperemesis, (n=200 women, 100 women with hyperemesis, 100 controls) . 100 controls) . Action Research group meetings (monthly).Action Research group meetings (monthly).

Results: Staff Focus GroupsResults: Staff Focus Groups

Three Main ThemesThree Main Themes

Unpopular-“Heart-sink” patients.Unpopular-“Heart-sink” patients.

Validity of admissions (disbelief in Validity of admissions (disbelief in physical symptoms, actually physical symptoms, actually psycho-social problems).psycho-social problems).

Staff feel let down by primary care Staff feel let down by primary care as a frontline filter.as a frontline filter.

Unpopular groupUnpopular group

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

““Heart-sink” patients (time-wasters)Heart-sink” patients (time-wasters)

[2fg2] [2fg2] – “It’s a bit of a waste of resources, you’re – “It’s a bit of a waste of resources, you’re just doing it to cover yourself. You could use the just doing it to cover yourself. You could use the bed for something else, but if the patients very bed for something else, but if the patients very insistent that they want to come in, then it’s very insistent that they want to come in, then it’s very difficult to do otherwise.”difficult to do otherwise.”

[4sf2]- “If they bother to wait 3 hours in A and E [4sf2]- “If they bother to wait 3 hours in A and E and then for you, another 2 hours they have a and then for you, another 2 hours they have a problem.”problem.”

[2sf2]- “But it might not be hyperemesis. It seems [2sf2]- “But it might not be hyperemesis. It seems quite an inappropriate way to manage them, but quite an inappropriate way to manage them, but I don’t know how else you can do it.”I don’t know how else you can do it.”

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

DisbeliefDisbelief

““Most of it’s psychological anyway.” Most of it’s psychological anyway.” [4fg1][4fg1]

““I’d say you wouldn’t see a true hyperemesis person that I’d say you wouldn’t see a true hyperemesis person that often, would you? Really, a genuine.” often, would you? Really, a genuine.” [1fg5][1fg5]

““Some women will actually starve themselves and Some women will actually starve themselves and induce a form of hyperemesis to get away from their induce a form of hyperemesis to get away from their home circumstances and they are inappropriate referrals home circumstances and they are inappropriate referrals to the ward area. So, when they are there, they are non-to the ward area. So, when they are there, they are non-compliant, because they see that if they get better they compliant, because they see that if they get better they are going back to the same social circumstances.”are going back to the same social circumstances.” [1fg4]. [1fg4].

Psycho-social admissionsPsycho-social admissions“ “ MMany of us perceive that many women admitted any of us perceive that many women admitted

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

Ineffective Primary CareIneffective Primary Care

““Sometimes GP’s who refer ladies saying Sometimes GP’s who refer ladies saying they are very dehydrated haven’t really tested they are very dehydrated haven’t really tested any urine or taken their blood or even tried any urine or taken their blood or even tried anti-emetics and they’re sent as an urgency anti-emetics and they’re sent as an urgency and almost always admitted.” and almost always admitted.” [nu2sfg1][nu2sfg1]

Results: Interviews with women Results: Interviews with women with Hyperemesiswith Hyperemesis

Broad theme of “symptoms.Broad theme of “symptoms.” ”

Managing lifeManaging life with hyperemesiswith hyperemesis..

Hospital as aHospital as a “cycle breaker” and “cycle breaker” and “burden lifter”. “burden lifter”.

Disbelief and invalidationDisbelief and invalidation as a as a person worthy of medical attention.person worthy of medical attention.

SymptomsSymptoms““I felt that I was dying. I was completely dry, I I felt that I was dying. I was completely dry, I

couldn’t even sip water, I couldn’t even couldn’t even sip water, I couldn’t even swallow, I had no saliva. I think, the nausea swallow, I had no saliva. I think, the nausea and the vomiting gave me dehydration, and and the vomiting gave me dehydration, and together made me… because of dehydration I together made me… because of dehydration I couldn’t even stand-up myself, I couldn’t do couldn’t even stand-up myself, I couldn’t do anything. I was simply feeling I was dying and anything. I was simply feeling I was dying and the feeling of nausea, and nothing to come out, the feeling of nausea, and nothing to come out, I was vomiting, but there was nothing to come I was vomiting, but there was nothing to come out.” out.” [pt1/2][pt1/2]

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

Hospital as a Burden Lifter Hospital as a Burden Lifter and Cycle Breakerand Cycle Breaker

““I think I needed to come in and get that… it is I think I needed to come in and get that… it is kind of a control thing because it does spiral out kind of a control thing because it does spiral out of control and you can’t get it back by yourself of control and you can’t get it back by yourself really … and it’s a relief even yesterday when I really … and it’s a relief even yesterday when I was sat in the waiting room and I was sick in the was sat in the waiting room and I was sick in the bin because I felt really terrible, even just kind of bin because I felt really terrible, even just kind of being here and knowing that there are people being here and knowing that there are people that are going to kind of look after me and take that are going to kind of look after me and take me serious and stuff does make a huge me serious and stuff does make a huge difference.” difference.” [pt9/1][pt9/1]

Disbelief and InvalidationDisbelief and Invalidation

““I think the doctor wasn’t too good to be honest. I think the doctor wasn’t too good to be honest. He was very harsh, he was just putting injections He was very harsh, he was just putting injections all over me, quite roughly and it was like he all over me, quite roughly and it was like he wouldn’t believe what I’m saying, that I’ve been wouldn’t believe what I’m saying, that I’ve been sick and everything, literally. He was just like, sick and everything, literally. He was just like, nothing’s wrong with you and I was like…, that nothing’s wrong with you and I was like…, that day I was so bad, I couldn’t even talk properly, day I was so bad, I couldn’t even talk properly, so I felt a bit terrible. So that was just the thing, so I felt a bit terrible. So that was just the thing, I’m not going to lie about it, nobody would if your I’m not going to lie about it, nobody would if your not well, so that was a bit funny.” not well, so that was a bit funny.” [pt8/1][pt8/1]

Conclusions - StaffConclusions - Staff

Hyperemesis patients a generally Hyperemesis patients a generally unpopular group.unpopular group.

Hyperemesis believed by staff to Hyperemesis believed by staff to have a significant psycho-social have a significant psycho-social aspect.aspect.

Staff feel unsupported by primary Staff feel unsupported by primary care in hyperemesis management.care in hyperemesis management.

Conclusions - WomenConclusions - Women

Women describe severe sometimes Women describe severe sometimes debilitating symptoms.debilitating symptoms.

Women tend to come to hospital Women tend to come to hospital when symptoms become un-when symptoms become un-manageable (cycle breaking).manageable (cycle breaking).

Women sometimes find hospital staff Women sometimes find hospital staff dismissive regarding the severity of dismissive regarding the severity of their symptoms.their symptoms.

Why are women with HG an Why are women with HG an unpopular group?unpopular group?

Why are these women Why are these women disbelieved? disbelieved?

““True Hyperemesis”?True Hyperemesis”?

Is HG stigmatised?Is HG stigmatised?

Changing PracticeChanging Practice“We’ve really got to try to like them” “We’ve really got to try to like them” [1fg7][1fg7]

Understanding patient experienceUnderstanding patient experience

Highlighting problems/ issuesHighlighting problems/ issues

Integrated Care PathwayIntegrated Care Pathway

HIS assessment questionnaire-NIHR HIS assessment questionnaire-NIHR funded RCT.funded RCT.

Publications for dissemination and peer Publications for dissemination and peer reviewreview

AcknowledgementsAcknowledgements

Prof. Heather WatermanProf. Heather Waterman. . School of Nursing, School of Nursing, Midwifery and Social Work, University of Manchester.Midwifery and Social Work, University of Manchester.

Prof. Henry KitchenerProf. Henry Kitchener. . School of MedicineSchool of Medicine University University

of Manchester of Manchester / / St. Mary’s Hospital, Central Manchester St. Mary’s Hospital, Central Manchester Hospitals NHS Trust.Hospitals NHS Trust.

Pam KilcoynePam Kilcoyne. Modern Matron Gynaecology, Central . Modern Matron Gynaecology, Central Manchester Hospitals NHS Trust.Manchester Hospitals NHS Trust.

Wards SM10 and SM9,Wards SM10 and SM9, Central Manchester Central Manchester Hospitals NHS Trust.Hospitals NHS Trust.

The Burdett Trust for Nursing.The Burdett Trust for Nursing.