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Preconceptiontoparenting:Motherhoodforwomenwithseverementalillness,asystematicreviewandmeta-synthesisofthe...

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ORIGINAL ARTICLE

Pre-conception to parenting: a systematic review and meta-synthesisof the qualitative literature on motherhood for women with severemental illness

Clare Dolman & Ian Jones & Louise M. Howard

Received: 5 November 2012 /Accepted: 13 February 2013# Springer-Verlag Wien 2013

Abstract The majority of women with a severe mentalillness (SMI) become pregnant and have children. The aimof this systematic review and meta-synthesis was to examinethe qualitative research on the experiences of motherhood inwomen with SMI from preconception decision making tobeing a mother. The experiences of the health professionalstreating women with SMI were also reviewed. Eleven data-bases were searched for papers published up to April 25,2012, using keywords and mesh headings. A total of 23studies were identified that met the inclusion criteria on theviews of women with SMI, eight reported the views ofhealth professionals including one which reported both.The meta-synthesis of the 23 studies on women's viewsproduced two overarching themes Experiences ofMotherhood and Experiences of Services. Sub-themes in-cluded the following: Guilt, Coping with Dual Identities,Stigma, and Centrality of Motherhood. Four themesemerged from the synthesis of the eight papers reportingthe views of health professionals: Discomfort, Stigma, Needfor education, and Integration of services. An understandingof the experiences of pregnancy and motherhood for womenwith SMI can inform service development and provision toensure the needs of women and their families are met.

Keywords Pregnancy . Severe mental illness . Systematicreview . Qualitative research

Introduction

The majority of women with psychotic disorders aremothers (Howard et al. 2001; McGrath et al. 1999), butmost research in this area has either focused on thesubjects’ psychopathology and the potential harm to theirchildren (Murray et al. 2003) or on service provision(Howard and Hunt 2008). Although in the past thefertility of women with severe mental illness (SMI) wasconsidered to be lower than that of the general popula-tion (Howard et al. 2002), recent research has found it isincreasing (Vigod et al. 2012). Concurrently, there hasbeen a growing awareness internationally of the need toprovide gender sensitive mental health services, e.g.,Mainstreaming Gender and Women’s Mental Health(2003), and there is a developing literature on the expe-riences of mothers with SMI including their experiencesof health services. The literature on health professionals’perspectives on looking after mothers with SMI is limitedand has usually focused on prescribing and risk (Lesteret al. 2005) and less on their attitudes and experiences,including challenges and how to meet them. This is arelatively under-researched area of healthcare; hence, theNational Institute for Health and Clinical Excellence(NICE) antenatal and postnatal mental health guideline(CG45) calls for more research on patients’ access tospecified services and the quality of care, as well as dataon “staff views on the delivery of care” (NationalInstitute for Health and Clinical Excellence 2007).Qualitative methods are increasingly acknowledged as avaluable means of gaining a deeper insight into theexperiences of service users and health providers, andcan contribute to a greater understanding of the wayservices are used and might be improved (Walsh andDowne 2005; Rice 2008). To our knowledge, there havebeen no meta-syntheses of the qualitative literature on

C. Dolman (*) : L. M. HowardSection of Women’s Mental Health, Health Service and PopulationResearch Department, Box PO31 Institute of Psychiatry, King’sCollege London, De Crespigny Park, London SE5 8AF, UKe-mail: clare.dolman@kcl.ac.uk

I. JonesDepartment of Psychological Medicine and Neurology, MRCCentre for Neuropsychiatric Genetics and Genomics, CardiffUniversity, Cardiff CF14 14XN, UK

Arch Womens Ment HealthDOI 10.1007/s00737-013-0336-0

pregnancy and childbirth (from preconception decision-making to views on being a mother with a mentalillness) from either the perspective of women with anSMI or the health professionals caring for them.

Meta-synthesis, deriving from theories developed byNoblit and Hare (1988), refers to “interpretive transla-tions produced from the integration or comparison offindings from qualitative studies” (Sandelowski et al.2006). The aim of this meta-synthesis was to bringtogether insights from qualitative studies that includedthe views of women with SMI on pregnancy and moth-erhood to give a fuller account of women’s perspectiveson the various aspects of the experience of havingchildren, and to explore the professionals’ experiencesof caring for these patients. It is hoped that byperforming a thematic synthesis of the relevant com-bined data, a more comprehensive account can be givenof these perspectives (Beck 2002).

We therefore aimed to:

(1) Synthesise the research literature on the experiencesof motherhood in women with SMI from pre-conception decision making to being a mother, in-cluding consideration of whether the experiences ofhaving children differed in women from differentdiagnostic groups.

(2) Synthesise the research literature on the experiencesof health professionals caring for mothers withSMI.

Methods

Studies were included if they satisfied the following inclu-sion criteria:

& Qualitative studies, using interviews, focus groups orboth, on the views of women with SMI or healthcareprofessionals caring for women with SMI on the subjectof having children.

& English-language papers published or in press inpeer-reviewed journals with a study population in-cluding women with serious mental illness (SMI)defined as female participants 18 years and olderwith a psychotic disorder (schizophrenia or bipolardisorder, with or without psychotic symptoms, andrelated disorders) or healthcare professionals caringfor them.

No demographic or geographic restriction was placedon sample participants or study setting. As it is goodpractice to be as inclusive as possible in a meta-synthesis(Walsh and Downe 2005), papers describing the concernsof women with SMI on genetic issues and how this

impacted on their views of pregnancy and motherhoodcould be included even if this was the only construct ofrelevance.

Exclusion criteria were:

(1) Studies only including participants under 18 years(2) Studies with no participants with SMI as defined above

(other than studies of health professionals)(3) Studies (randomised controlled trials, cohort studies,

case–control studies, cross-sectional studies, clinicalcase studies, surveys or dissertations/reports/bookchapters) with no qualitative component

Procedure

The following bibliographic databases were searched fromtheir respective start dates (given in parenthesis) to April 25,2012: PsycINFO (1806), Ovid MEDLINE(R) In-Process &Other Non-Indexed Citations and Ovid MEDLINE(R)(1946), EMBASE Classic + EMBASE (1947), Maternityand Infant Care (1971), British Nursing Index and Archive(1985), CINAHL (1982), Applied Social Services Index andAbstracts (1987), Social Service Abstracts (1979),Sociological Abstracts (1952), Social Policy and Practice(1890s).

For each of the databases, an inclusive search wasperformed using subject headings or mesh terms, textwords and keywords. Search terms included: bipolar dis-order, schizophrenia, SMI, postpartum psychosis; pregnan-cy, childbirth, perinatal, antenatal, puerperal, postnatal,primipara; mother, parent, maternal; qualitative, grounded

Papers identified throughDatabase searching:

n = 214

Papers identified by alternative means:

Hand searches: n=8Citation tracking: n=5

Papers after screening:n = 227

Full-text articles assessed for eligibility: n = 72

Papers excluded: n = 49

Reasons for exclusion:

Not reporting qualitative research: n = 32Study did not address issues around pregnancy or having children: n = 19Sample did not include women with SMI”s views: n = 11* papers could be excluded for more than 1 reason

Studies included in the review:n = 23

Fig. 1 Flow diagram of screened and included papers for women withSMI

C. Dolman et al.

theory, focus groups. Terms were combined using theBoolean “and” and “or” functions and single wordsearches were conducted as well as subject headings tocheck for omissions. Searches were complemented withcitation tracking and contact with ten researchers in thefield (Fig. 1). Using the same databases, a separatesearch was conducted to identify studies examining theexperience of health professionals caring for pregnantwomen or mothers with SMI. Additional search termsincluded: health professionals, medical professionals,clinicians, doctors, psychiatrist, nurses, midwives, peri-natal psychiatric workers, antenatal healthcare workers(Fig. 2).

Relevant data were extracted from all studies using astandardized data extraction form. This was to recordbasic information such as sample characteristics, setting,date and form of data collection, and analytical ap-proach. The papers were re-read to identify the first-order constructs (i.e., experiences of women as reportedin original studies) and second-order constructs (i.e.,original study author interpretations or conclusions),and checked to confirm that the authors’ interpretationswere supported by the data presented in the study. Atthis stage the comparison across and within studies toidentify and synthesize themes began.

The studies were methodically appraised by CDusing the previously validated Critical Appraisal SkillsProgramme CASP (Oxford 2010) as a guide and 20%of papers were independently assessed by a secondreviewer (KT); a consensus was reached on quality. TheCASP checklist was adapted to incorporate elements of theBMJ Qualitative Research Checklist (BMJ 2011) so that the

finalised version included items assessing study context,quality of analytical methods and service user involve-ment (see Appendix 1). Papers were scored out of atotal of 62, with an average of 42 achieved (scores arelisted in Table 1).

Analysing and synthesizing the selected studies

Appraising quality also gave another opportunity toexamine the studies and compare the constructs theyhad identified. Apparent contradictions and their possi-ble resolution were also re-examined at this stage,according to the principles of Noblit and Hare’s (1988)approach to synthesizing qualitative studies. Findingsare juxtaposed to both identify homogeneity of themesand note discordance. This “translation” of studiesserves to identify commonalities which, in the secondstage, can be synthesized to elucidate more refinedmeanings and concepts (Walsh and Downe 2005). Thestudies were independently analysed by LH and a con-sensus was reached on the content of the meta-synthesis, a procedure designed to enhance reliability(Mays and Pope 2000).

Results

A total of 227 papers on women with SMI were ini-tially identified; 23 studies met inclusion criteria for themeta-synthesis with a total of 355 women (see Fig. 1).These reflected an international perspective on the viewson pregnancy and motherhood of women with SMI,with papers from eight countries, including six eachfrom the US and UK (see Table 1). Eight papers (froman original search of 219) were located which reportedthe views of 143 health professionals on the pregnancyand motherhood issues affecting women with SMI (seeFig. 2). These figures include one paper, Nicholson etal. (1998), which reported results from both groups.Details of these papers are given in Table 4. Pleasenote that, in the following report of results, first-orderconstructs are quoted in italics, while second-order con-structs are in plain text with single quote marks.Information on excluded studies is available from authoron request.

Studies of women with SMI

Nine themes were identified: Stigma, Guilt, Custody loss,Concern over effect on the child, Isolation, Coping withdual identities, Centrality of motherhood, Problems withservice provision, Positive aspects of service provision.

Papers identified throughDatabase searching:

n = 205

Papers identified by alternative means:

Hand searches: n=7Citation tracking: n=7

Inclusion criteria applied to 219

Full-text articles assessed for eligibility: n = 39

Studies included in the review: n = 8

Papers excluded: n = 31Reasons for exclusion:

Not reporting qualitative research: n = 15

Study did not address issues around pregnancy or having children: n = 21

* papers could be excluded for more than 1 reason

Fig. 2 Flow diagram of screened and included papers for healthprofessionals

Motherhood for women with severe mental illness

Table 1 Summary of studies on views of women with severe mental illness

Studies Date Title Country Qualityappraisalscore

Methodology

Ackerson et al. 12 outpatient mothers withSMI, psychotic or severe mood disorder

2003 Coping with the dual demands of severe mentalillness and parenting

USA 42 Grounded theory +narrative history

Alakus et al. Focus groups of mothers withunder-5s, part of “Parents with Psychosis”project

2007 The needs of parents with a mental illness whohave young children: an Australian perspectiveon service delivery options

Australia 21 Thematic analysis

Bassett et al. 2 focus groups, 4 interviewswith women with SMI using communityrehabilitation services

1999 Parenting: experiences and feelings of parentswith a mental illness

Australia 43 Thematic analysis

Chernomas et al. 28 outpatients 18 withschizophrenia, 10 schizo-affective disorderin focus groups

2000 Perspectives of women living with schizophrenia Canada 37 Thematic analysis

Davies and Allen 11 outpatients with SMI andchildren, 3 with psychosis, 2 BD, 1 OCD,5 depression

2007 Integrating “mental illness” and “motherhood”:the positive use of surveillance by healthprofessionals. A qualitative study

UK 40 Interactionalframeworkanalysis

Diaz-Caneja and Johnson 22 outpatients, 8with schizophrenia, 10 BD, 4 MDD withpsychotic symptoms

2004 The views and experiences of severely mentallyill mothers: a qualitative study

UK 44 Thematic analysis

Doucet et al. 9 women who had beenhospitalized for PPP

2012 Postpartum psychosis: support needs of mothersand fathers

Canada 38 Content analysis

Edwards and Timmons 6 former MBU patients,3 PPP, 1 depressive psychosis, 2 severe PND

2005 A qualitative study of stigma among womensuffering from postnatal illness

UK 41 Grounded + feministtheory

Engqvist et al. 10 internet narratives of womenwith PPP

2011b Women’s experiences of postpartum psychoticepisodes — analyses of narratives from theinternet

Sweden 44 Content analysis

Heron et al. 5 women who experienced PPP 2012 Experiences of recovering from PP: a serviceuser/researcher collaboration

UK 43 Grounded analyticinduction approach

Khalifeh et al. 18 mothers: 2 with schizophrenia,6 BD, 10 MDD

2009 Home treatments as an alternative to hospitaladmission for mothers in a mental health crisis:a qualitative study

UK 53 Content analysis

Meiser et al. perceived genetic riskof BD: 10 euthymic Bipolar women

2005 Implications of genetic risk information in familieswith a high density of bipolar disorder: anexploratory study

Australia 48 Framework analysis

Montgomery et al. 20 outpatient mothers: 3 withschizophrenia, 4 BD, 9MDD, 4 unspecified

2006 Keeping close: mothering with serious mental illness Canada 50 Grounded theory

Montgomery et al. 32 mothers with SMI inpatientand in community, Canadian Ministry of Healthdefinition

2011 Mothers with serious mental illness: their experienceof “Hitting Bottom”

Canada 41 Thematic + narrativeanalysis

Mowbray et al. 24 mothers, 15 in community.SMI according to “agency records”

1995 Parenting and the significance of children for womenwith a serious mental illness

USA 43 Thematic analysis

Nicholson et al. Focus groups with 42 mothers incommunity: 23 affective disorder, 8 psychoticdisorder, 6 anxiety disorder, 5 other

1998 Focus on women: mothers with mental illness: 1 Thecompeting demands of parenting and living withmental illness

USA 51 Thematic analysis

Themes have not been ranked according to relative im-portance or the number of times mentioned because it wasnot possible to deduce from such diverse studies whichthemes were more important to women and professionalscompared to others. A second stage of synthesis wasconducted which produced two overarching themes termed:Experiences of Motherhood (Table 2) and Experiences ofServices (Table 3).

Experiences of motherhood

Stigma

The corrosive effects of stigma were cited in over three-quarters of the studies, exacerbating women’s problemsby preventing them from discussing them openly (Diaz-Caneja and Johnson 2004); discouraging them from go-ing out and making social contacts (Alakus et al. 2007)and making them more reluctant to seek help (Ackerson2003). Wilson and Crowe (2009) found that the stigmaassociated with a psychiatric diagnosis was reinforced byalso being a parent. As Davies and Allen (2007) expressit: “Women who are mothers and also users of mentalhealth services face particular challenges of identity man-agement because of the inherent tension between thesocietal ideals around the ‘good mother’ and socialnorms associated with mental illness” (p. 369). They feelstigmatized as women with SMI in their contact withprofessionals and society at large and this contributes tomany women feeling “a pervasive sense of shame andguilt” (Engqvist et al. 2011b). Edwards and Timmons(2005), who focused specifically on the effect of stigmain the postnatal period, found that all of the six womeninterviewed had experienced stigma from others, but thatthey also suffered from “self-stigma” because they sawthemselves as “bad mothers” (p. 477). The fact that thesewomen felt unable “to adhere to the ‘supermom’ ideolo-gy further compounded their feelings of failure and thestigma they felt towards themselves” (Edwards andTimmons 2005). In addition to this internalized stigma,the feelings of guilt are compounded by an awareness ofsociety’s stigma by association against their children(Ueno and Kamibeppu 2008). Thus, Montgomery et al.(2006) describe women’s efforts to “appear normal” forthe sake of their children (p. 23).

Women referred to feelings of guilt in the majority of thepapers examined, but this was for a number of differentreasons. Some spoke of being deeply ashamed: “My childdeserves a lot better” (Montgomery et al. 2011, p. 5). ManyT

tinued)

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12outpatient

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Guilty

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groups

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Relationshipwith

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al.(2000

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Haunted

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rief”

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Feared

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Manybenefits:“love,

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DaviesandAllen(2007)

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revise

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support,

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being“m

patient”

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Hugeguilt

becauseso

wantedto

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mother”

important

Khalifeh

etal.(2009

mothers:2with

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C. Dolman et al.

tinued)

Studies

Custody

Concern

impact

onchild

Isolation

Dualidentities

Stigma

Centrality

ofmotherhood

distressingbehaviour

andburdeningthem

he’sthe

parent”

Meiseret

al.(2005

)perceivedgenetic

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Halfsaid

illness

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decision

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ostwould

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ffectedfetus

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explanationforBD

stigmatism

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butnotsocially

Montgom

al.(2006

outpatient

mothers:3

schizophrenia,4BD,

9MDD,4

unspecified

Someashamed

bythoughtsof

hurtingtheir

rendespite

loving

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illness

toauthorities

orfamily

ofcustodyloss

Awareof

toprotect

theirillness,

“theirprim

responsibility”

Felt“never

enough

amother,

“intensifyingtheir

effortsto

appear

Pressure

to“appear

al”—

anxietythat

not“ideal

mother”

stressful

Motherhoodgave

meaning,identity

of“m

other”

signified

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—“our

areour

life”

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al.(2011)

32mothers

inpatient

community,C

anadian

Ministryof

Health

definitio

Tremendous

guilt.

Manyspokeof

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antthekids

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aboutwhat

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Neededto

through

experience

ofhitting

“bottom”,oftennot

isolated

Storiesof

hitting

“bottom”illustrated

“sense

ofpowerlessness

asboth

aperson

mother”

Felt“isolated”

“embarrassed”

bytheirillness

Allspokeof

importance

andvalue

oftheirrole

asmothers.

etal.(1995

mothers,1

community.S

accordingto

“agency

records”

Guilty

had“let

theirchild

down.”

“Not

themotherI

hadwantedto

Halfwould

liketo

theirchild

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professional

asconcernedhow

hadbeen

affected

Single

mothers

feltthey

needed

supportfrom

thechild

ren'sfathers

Over2/3feltchild

“motivated

togrow

anddevelop”

motherhood.

having

achild

“motivated”them

responsible;

“Iwas

happiestperson

oftheearth”

Nicholson

etal.(1998

cusgroups

42mothers

incommunity

affectivedisorder,

8psychotic

disorder,6

anxietydisorder,5

Tryingto

balance

parentingdemands

andillness

stress

andguilt

Constantly

toprovethem

selves

orwill

oflosing

achild

nevergoes

“Myheartisin

chains”

Sometim

esmisinterpret

alproblemsas

relatedto

theirillness:

“Because

amentalillness,h

raised

herwrong?”

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beingaparent

“can

beapowerful

motivatingforce”,

butmanyconfront

“rolestrain

issues”

Undermined

bysocietal

stigma:

“People[think]

goingto

ourchild

ren”

“Unm

itigatedenthusiasm

”fortalkingabouttheir

renshow

groups

etal.(2009

enwith

majority

concerned

aboutchild

ren'srisk

ofinheritin

gpsychiatric

illness

Robertson

(2003)0sufferersof

Guiltat

possible

effect

oninfants,

distress

tofamily,

guiltythat

“bad

mother”

Worried

illness

adetrim

entaleffect

onchild

'sdevelopm

endescribed

feelings

ofisolation

andbeingscared

“Regaining

self”:

enfeltthey

hadlosttheirminds

andidentity.To

regain

confidence

begood

mother

Stigmaandlack

ofunderstandingfrom

friends.Self-stig

matised

somoreisolated

Devastatedthat

hadnot

“Western

idealof

motherhood”

butmostfelthadmade

tochild

renwhen

recovered

Sands(1995)

10single

mothers

livingin

residential

programme:

6schizophrenia,

1schizotypalpersonality

disorder,1

1unknow

ensensitive

abouttheirlosses

eededto

resolvethem

Socially

isolated

ependent

onrehabilitationservice

“Viewed

selves

aschild

ren”:feltthey

weretreated“likea

”andsome

expected

tolook

afterthem

whenolder

“ childbearingand

parenthood

aswaysto

affirm

theirnorm

alcy”

Forall,child

ren“central

totheirliv

es”,gave

“meaning

focus”.

Somereliedheavily

onchild

renforsupport:6

hopedthey'dtake

ofthem

Savvidou

etal.(2003

mothers,1

ingwith

10schizophrenia,

Manywho

lostcustody

indivorcespokeof

theirgrief:“the

Imagined

renhaving

problemsdueto

mother's

illness

Someisolated

partners.

Illnessmadeithard

tohave

amother/child

relatio

nship:

“when

resees

enwith

“incapable

mothers”.Hardto

maintain

Most“viewed

asoffering

aryjoy

totheirparents”

women, notably those who had postpartum psychosis (PPP),felt they had failed their children by being separated fromthem for a time as infants: “I still have pangs of guilt that shewas in there [hospital] and cared for by members of staff andnot me” (Robertson and Lyons 2003, p. 423). Many wereashamed that they “couldn’t cope as a mother” (Edwardsand Timmons 2005) or that they hadn’t lived up to thesocietal “ideal of motherhood”: “I felt a failure, here wego again, I’m a failure as a mother” (Davies and Allen 2007,p. 369).

Of the studies addressing parenting, several quotedwomen who worried about the impact of their childrenseeing their illness: “I don’t want them to see me in a badway, as I saw my mother. Therefore I did not want thatburden put on them” (Diaz-Caneja and Johnson 2004, p.476). Some mothers regretted that their illness had forcedtheir children to take on too much responsibility in thehome: “My kids have had to come home and, you know,had to help with the housework” (Ackerson 2003, p. 115).Others felt guilt that their illness-driven behaviour wasbad for their children: “I feel guilty a lot of the timebecause I get irritable with them” (Wilson and Crowe2009, p. 880). Notably, Venkataraman and Ackerson’sstudy (2008) focusing on women with a diagnosis ofbipolar disorder highlighted participants’ guilt at “settinga bad example” when manic and overspending, gambling,etc. (p. 396).

Custody loss

Fear of custody loss was related to severe chronic ill-nesses, with most studies reporting it as a concern. InAckerson’s (2003) study, for example, 11 of the 12participants were worried about losing custody; this wasnot without reason as seven had lost custody of a childat some point. Bassett said this fear “permeated all theyhad to say” (Bassett et al. 1999). This fear of losing theirchild affected communication with care professionals,with some mothers saying they masked their symptomsbecause of it (Montgomery et al. 2006), while it madeothers reluctant to seek help (Khalifeh et al. 2009). InSands’ (1995) study, most interviewees struggled tomaintain custody and were traumatized by separation,and Savvidou et al. (2003) reported how traumatic mostwomen found this: “the greatest pain I’ve been through,drugs, prison, psychiatric clinics etc., was the loss of mychildren” (p. 397). For a number of the women withschizophrenia interviewed by Chernomas et al. (2000),the loss of a child was almost unbearable: “You start toget feelings for them, and then they’re gone, and youdon’t think you have a reason to live…” (p. 1519). Afew papers included the comments of women who hadpermanently lost custody (Diaz-Caneja and JohnsonT

tinued)

Studies

Custody

Concern

impact

onchild

Isolation

Dualidentities

Stigma

Centrality

ofmotherhood

borderlin

epersonality

disorder,1

delusional

disorder

greatest

I'vebeen

through

…was

ren”

Socially

ostracised,

reliedon

theirfamily

weneed

arealwaysill…”

family

andsocial

relatio

nships

becauseof

stigma

mothering

importantto

wouldn'tbe

outmychild

UenoandKam

ibeppu

(2008)

20outpatient

Japanese

mothers:1

schizophrenia,

7mooddisorders(D

illness

affected

renand

madethem

Lessfear

ofcustody

loss,asow

nmothers

caredforthem

renwhenneeded

Feltsorryformaking

thechild

distressed,

forexposing

tosymptom

sandfor

stigmachild

Lessisolated

astheir

mothers

steppedin

tohelp,b

utsocially

stigmatised

Feltneed

tobalance

“self-care”andcaring

forthechild

Someworried

bestigmatised:“M

ychild

hatesthat

thisaw

disorder”

Allexpressedgreatlove

fortheirchild

“Mychild

isthemost

importantthingin

mylife”

Venkataraman

Ackerson(2008)

enwith

incommunity

Feltguiltyat

setting

abadexam

whenmanic

overspending

Prepared

torenounce

alcoholism

orabusive

relatio

nships

tokeep

custody

anddepressive

behaviourhadnegativ

onchild

disciplin

Talked

abouttheir

“positive

personality

traitsas

strengthsin

parenting”

Alltalked

positiv

elyabout

beingamother:“T

ontheface

oftheearthmoreim

portant

mygirls”

Wilson

&Crowe(2009

enwith

incommunity

Self-blame:

“Ifeel

guiltyalotof

timebecauseIget

irritablewith

Lackof

moderationcan

toundisciplin

edandpoor

parenting,

feltshould

self-control

Veryaw

“moderate”

monito

rtheir

emotions,

leadsto

“problem

identityas

aparent”

Felt“judgedas

abadparent”

becauseof

theirdiagnosis.

Stigmaledto

“self-

surveillance”

SMIsevere

mentalillness,B

lardisorder,P

stpartum

psycho

sis,MDD

depressive

disorder,M

motherandbaby

C. Dolman et al.

Table 3 Pregnancy and motherhood for women with severe mental illness: experiences of services

Studies Problems with service provision Positive experiences ofservice provision

Ackerson (2003) 12 outpatientmothers with SMI

Delayed diagnosis, inconsistency of care,need for childcare in crises

Those accessing rehabilitationservices more likely to mentionprofessionals as supportive

Alakus et al. (2007) Focus groupsof SMI mothers with under–5s

Need for better inter–agency communication,more information on discharge, and supportgroups for preschool parents

Bassett et al. (1999) 2 focusgroups, 4 interviews with womenwith SMI in community

Upset at constantly changing staff, better accessto crisis help

Would benefit from contact withothers in same situation, onemother appreciated having aconstant case manager to talk to

Chernomas et al. (2000) 28outpatients with schizophreniain focus groups

Poor communication with professionals:reluctant to talk about parentingproblems as no time

Individual good experience: “I likehim as a doctor, he's very goodwith my schizophrenia”

Davies and Allen (2007) 11outpatients with SMI and 1or more children

Need to “manage identity” with clinicians,felt they failed to take women with SMIseriously as “expert” mothers

Individual health visitor praised fornoticing woman's needs as well asbaby's, and allowing time to talk

Diaz-Caneja and Johnson (2004)22 outpatients, 8 withschizophrenia, 10 BD, 4 MDD

unmet needs for consistent support in thecommunity, creches for doctor's appointments,parenting support and peer groups

Generally satisfied with treatment

Doucet et al. (2012) 9 women whohad been hospitalized for PP

Upset that put on general psychiatryward and not allowed to see their baby.Little community support

Edwards and Timmons (2005)6 former MBU patients

5 women said illness severity not recognisedso treatment delay

Diagnosis “label” found usefulby some women

Engqvist et al. (2011b) 10 internetnarratives of women with PPP

Most women angry and not listened to by staff,who were not well informed about PPP

Minority satisfied with inpatient care

Heron et al. (2012) 5 women whoexperienced PPP

All felt should be able to have baby with them.Shock at professionals' ignorance of PPP,wanted more information and support groups

Valued specialist care if in MBU

Khalifeh et al. (2009) 18 motherswith SMI treated at home in a crisis

Preferred home treatment but children preferredit if mothers hospitalised

Those treated in a Crisis House preferredit to hospital or home treatment

Meiser et al. (2005) The authorsperceived genetic risk of BD: 10euthymic Bipolar women

Ignorance of real risks of passing on BDshould be addressed

Majority satisfied that prenatal testingnot offered

Montgomery et al. (2006) 20 motherswith severe mental illness (outpatients)

Saw professionals as not fully understandingtheir desire to be good mothers: “your kidswill grow up fine without you”

Wanted help with parenting when ill– if available, felt they would copebetter

Montgomery et al. (2011) 32 motherswith SMI inpatient and in community

External stressors, esp. social services,exacerbated descent into severe depression

Mowbray et al. (1995) 24 motherswith SMI, 15 in community

Services often unaware they were mothers. Morehelp for children and practical support needed,parent support groups desirable

Nicholson et al. (1998) 42 motherswith SMI in focus groups

Lack of childcare provision if need to be hospitalized– may delay help seeking

Vast majority welcomed focusgroup disappointed not regular

Peay et al. (2009) 20 women withBD 50% with children

Wanted general information on genetic risk andcounselling

Robertson and Lyons (2003)10 sufferers of PPP

Some upset that treated in psychiatric unitnot MBU, and wanted more information onPPP for themselves, family and partners

Sands (1995) 10 single mothers living insupportive residential programme

Resentful of mental health programmes,including social rehabilitation

Appreciated stability of rehabilitationprogramme allowing them to keepcustody of children

Savvidou et al. (2003) 20 Greek motherswith SMI, 13 living with children

Tried to conceal illness to avoid custodyloss, most felt their opinion s ignored indecisions about the children

Social services helped them to keepin contact with children

Ueno and Kamibeppu (2008) 20 Japanesemothers with SMI

Need for parenting education

2004; Savvidou et al. 2003), and the emotional toll thishad taken: “A deep sense of loss, grief and some angerhaunted the women who had lost children to child andfamily services. Years later, these women were still strug-gling to process and integrate their experience of beingjudged an unfit mother” (Chernomas et al. 2000).

Concern over the impact on the child

This consisted of three sub-themes:

& Genetic — that a child may have inherited her mentalillness. Although only two papers focused on geneticsexclusively (Meiser et al. 2005; Peay et al. 2009), thisfeatured as a concern in several other studies (Bassett et al.1999; Chernomas et al. 2000; Diaz-Caneja and Johnson2004; Heron et al. 2012; Mowbray et al. 1995). In Peay’sstudy on the perception of genetic risk among peoplewith bipolar disorder, a large majority were concernedabout their children’s risk, and Meiser’s interviewswith the same diagnostic group found that half thewomen said it had affected their decision whether ornot to have children. It is worth noting that in boththese studies, a significant proportion had a strongfamily history of mental illness (in Meiser’s study, allhad at least two affected relatives), so their awarenessof the condition’s heritability would have been greaterthan for many women with SMI.

& Environmental — for example, that a mother’s periodicinability to care properly for her child might causesignificant developmental damage (Mowbray et al.1995). Many were worried about the generally detrimen-tal effect of their illness on their children (Ackerson2003; Robertson and Lyons 2003; Ueno andKamibeppu 2008). Some women were worried about thepsychological impact of their child witnessing frighteningbehaviour (Diaz-Caneja and Johnson 2004), others by thelack of a “normal” childhood (Ackerson 2003) and theburden placed upon the child to care for their mother: “it’salmost like sometimes I am the child, and he’s the parent”(Khalifeh et al. 2009, p. 636).

& Secondary stigma — by the child’s association with a“mad mother”. For example, Ueno and Kamibeppu(2008) say their interviewees “worried that their childrenmay be stigmatized as ‘a child of a mother with a mentalillness’” and quote a woman saying “I think my childhates that I have this awful disorder” (p. 526). Oneparent described harassment and verbal abuse that herdaugh te r expe r i enced a t schoo l and in herneighbourhood, forcing them both to become reclusive(Ackerson 2003). Other studies concerned with parent-ing also noted the impact of stigma on children and thepossibility that others would reject them: “If othermothers knew I had a mental illness, they might notallow their children to play with mine” (Diaz-Canejaand Johnson 2004, p. 476).

Isolation

Women returned frequently to their feelings of isolation. Sub-themes related to the damage done to social and family re-lationships by their illness and the difficulties of raising chil-dren alone. Many had no one to talk to (Montgomery et al.2006), and felt very isolated (Bassett et al. 1999). “Pervasivein this group [28 women with schizophrenia] was an over-whelming sense of loneliness and isolation” (Chernomas et al.2000). Because of their illness, they often had poor socialnetworks and meager financial resources, and many spoke ofhow much more difficult it was to parent alone, especiallywhen they were ill (Khalifeh et al. 2009; Nicholson et al.1998; Sands 1995; Savvidou et al. 2003). These studies gen-erally involved women with the most severe enduring illness,including a high percentage of women with schizophrenia.This contrasted with the women who had PPP who reportedstrong family support networks (Doucet et al. 2012; Heron etal. 2012; Robertson and Lyons 2003).

Coping with dual identities

Combining the persona of “woman with mental illness” withthat of “mother” had both negative and positive effects on

Table 3 (continued)

Studies Problems with service provision Positive experiences ofservice provision

Venkataraman and Ackerson (2008)10 women with BD in community

Wanted more crisis help for themselvesand children, help with parenting andpeer support groups

Wilson and Crowe (2009) 4 womenwith BD in community

Felt professionals judging them as inadequateparents: “I felt like he was blaming me —that … I had deliberately ruined … this child”

SMI severe mental illness, BD bipolar disorder, PPP postpartum psychosis, MBU mother and baby unit

C. Dolman et al.

identity: “I felt 100% female, I felt complete, a woman”(Diaz-Caneja and Johnson 2004, p. 475). Some studiesreported the added pressure to be a “perfect” mother: “Ihad this vision of, picture of how I would be as a motherand I didn’t live up to that expectation, so it made mefeel quite bad” (Edwards and Timmons 2005, p. 477).Sometimes this is viewed positively: Nicholson et al.(1998) quotes a woman saying “I think sometimes wemake the better parents because it is so hard to be likethis and we have to try twice as hard” (p. 638). Othersreported that motherhood “motivated them to grow anddevelop” (Mowbray et al. 1995; Nicholson et al. 1998).Having interviewed and observed ten chronically mentallyill mothers in a supported residential programme, Sands(1995) suggested that they “saw childbearing and parent-hood as ways to affirm their normalcy [as] parenthood isa pervasive human activity that connects one with thecommunity” (p. 94).

Altogether, identity issues were referred to in themajority of papers, and it was a particular problem forwomen whose first experience of SMI came immediate-ly after childbirth. Heron et al. (2012) described theshocking experience of suffering a PPP, especially withno history of mental illness, as “an affront” to one’ssense of personal and social identity (p. 9). Womeninterviewed by Robertson and Lyons (2003) describeda theme of “regaining self” as they gradually recovered(p. 423).

Centrality of motherhood

Eighteen of 23 studies highlighted the importance of being amother to women with SMI. This had negative implicationswhen women were forced to relinquish their mothering roledue to illness as it led to feelings of failure and lowered self-esteem (Edwards and Timmons 2005; Heron et al. 2012;Montgomery et al. 2011). This differed somewhat betweenwomen with a disabling chronic psychotic illness andwomen with an episode of PPP — a severe episodetriggered by childbirth from which they had recovered.The former group often experienced a lifelong struggle tocope with parenting, often alone and impoverished(Chernomas et al. 2000; Diaz-Caneja and Johnson 2004).The PPP group, in contrast, reported much better familyand social support. Many in this group were upset thatbecoming a mother had not been the “perfect” experiencethey had expected: “My sisters had babies and nothing’sgone wrong, it was just me…” (Robertson and Lyons2003, p. 420).

The vast majority of studies conveyed the positive effectof becoming a mother. The studies with the most severely illsamples, such as Chernomas et al. (2000) — 28 outpatientswith schizophrenia — and Sands (1995) — ten single

mothers with SMI in a residential programme —contained particularly positive affirmations of the centralrole children played in these women’s lives. Indeed, thelatter study, which used a comparison group of wellmothers attending a day-care centre, found that thewomen with SMI regarded being a mother as the mostimportant thing in their lives: “in contrast with … theday-care mothers [who] expressed more ambivalenceabout being a parent. […] One way or another, all thementally ill mothers said that being a mother was cen-tral to their existence, that it gave meaning and focus totheir lives” (Sands 1995, p. 90).

Experiences of services

The two themes which have been combined under thisheading are: (a) Problems with service provision and (b)Positive experiences of services (Table 3).

Problems with service provision

Twenty two out of 23 studies reported problems withthe provision of services, ranging from difficulties withinteracting with medical staff (Wilson and Crowe 2009;Engqvist et al. 2011b; Davies and Allen 2007) to feel-ing upset by the frequent changes in personnel (Bassettet al. 1999). This theme also included the differenttreatment needs of women with PPP, who complainedof treatment delay due to misdiagnosis (Edwards andTimmons 2005) and not being able to have their babywith them in hospital (Robertson and Lyons 2003). Twostudies cited drug side effects as impairments to parent-ing which were not fully recognized by professionals(Mowbray et al. 1995) and (Savvidou et al. 2003), andsome reported the need for more practical help during acrisis, such as childcare provision (Diaz-Caneja andJohnson 2004; Nicholson et al. 1998; Venkataramanand Ackerson 2008).

A major sub-theme in the negative experiences ofservice provision was the unmet need that many womenidentified for both information and peer support groups.The majority of researchers asked women what they feltwould improve their lives in relation to becoming par-ents, and many suggested well-written information ondischarge, especially on parenting issues (Heron et al.2012). Mothers who had suffered PPP were keen formedical professionals to receive better training about thecondition (Edwards and Timmons 2005; Engqvist et al.2011b).These mothers also wanted peer support groupsas they felt isolated, even from the larger group ofmothers who had suffered from postnatal depression, forwhom there was felt to be more support (Heron et al. 2012).

Generally mothers with SMI were enthusiastic about peersupport (Alakus et al. 2007; Mowbray et al. 1995;Venkataraman and Ackerson 2008). This would give themthe opportunity to “share their experiences and obtain guid-ance about coping with parenting” (Diaz-Caneja and Johnson2004), and so could be viewed as an informal method ofparenting education, which was also a popular request(Ueno and Kamibeppu 2008; Venkataraman and Ackerson2008). Some expressed a preference for diagnosis-specificgroups (e.g., women with bipolar disorder interviewed byVenkataraman and Ackerson 2008).

Positive experiences of services

Many studies gave examples of positive experienceswith services but these were usually at the level ofindividual healthcare professionals rather than thehealthcare system (Bassett et al. 1999; Chernomas etal. 2000; Davies and Allen 2007; Savvidou et al.2003). An emergent sub-theme was the desire to talkregularly to someone sympathetic; when this was avail-able it was appreciated: “To have someone you can talkto and trust like I can with my case manager … thatmakes me stable” (Bassett et al. 1999, p. 601). Where special-ist services were available, for example a Mother and BabyUnit (Heron et al. 2012), rehabilitation service (Ackerson2003) or Women’s Crisis House (Khalifeh et al. 2009), wom-en were appreciative. Of the 42 women included in focusgroups by Nicholson et al. (1998), the vast majority welcomedthe opportunity to discuss issues with other mothers with SMI,and were disappointed that it was not a regular part of recov-ery programmes.

The views of health professionals on the pregnancyand childbirth issues of women with severe mental illness

Using the same databases as above, a second search wasperformed (Fig. 2). We identified eight papers whichinvestigated health professionals’ perspectives (Table 4).Of note however, is that four of these papers were byEngqvist and colleagues in Sweden focusing on healthprofessionals caring for women with PPP. Two of thesestudies used the same dataset to describe the experiencesof psychiatric nurses and the later two used anotherdataset to describe the experiences of psychiatrists. Oneof the three UK papers described perinatal psychiatricand antenatal workers (see Table 4) caring for womenwith SMI (Wan et al. 2008), and the other addressed theattitudes of mental health nurses towards severe perinatalmental illness (McConachie and Whitford 2009) andtowards caring for psychiatric patients who were alsoparents (Maddocks et al. 2010). The American paper

reported on focus groups with psychiatric case managersas well as groups of mothers with SMI, described earlier(Nicholson et al. 1998). Table 5 displays the four themeswhich emerged from a synthesis of these papers:Discomfort (comprising Anxiety and Additional responsi-bility), Stigma, Need for education, and Integration ofservices. These were further synthesized into two super-ordinate themes: Experience of professionals, comprisingDiscomfort and Stigma, and Views on service provision,combining the latter two.

Experience of professionals

Discomfort

Two themes that emerged under the heading of “experience”were Anxiety and Additional Responsibility, whichoverlapped to the extent that they have been combinedunder the superordinate theme of Discomfort.

Anxiety

McConachie and Whitford (2009) found that generalpsychiatric nurses “had little experience and felt uneasyworking with women who had an SMI in the perinatalperiod” and were “frightened” of looking after a baby. “Ithink it is stressful … I feel responsible … my worriesand anxieties go up right away” (Community nurse, p.871). Similarly, Wan et al. (2008) revealed the anxiety ofmidwives when dealing with women with schizophreniaas they felt inadequately trained for the task: “Whensomebody says schizophrenia, especially in midwifery,people get frightened because they think they’re symp-tomatic …. I think we need more awareness sessions formidwifery” (registered mental nurse working in the ante-natal clinic, p. 179). The psychiatrists interviewed byEngqvist et al. (2011a) felt burdened by a feeling of“great responsibility” for both mother and child whenmaking decisions. The psychiatric nurses in the 2009Swedish study spoke of the “strong emotions” they felttreating women with PPP, including “sadness, sympathy,empathy, compassion, discomfort, anger, anxiety and hap-piness”. One nurse said: “often the women have a veryextroverted chaotic behavior, hard to work with, creatingmuch anxiety in both me and others” (Engqvist et al.2009, p. 27). Several were anxious about the responsi-bility of keeping the women and their babies safe, andtwo nurses described being angry with a mother whodrowned her baby. Engqvist and colleagues suggest edu-cators should address this problem as these negativelycharged emotions “could interfere with providing com-passionate and effective nursing care”.

C. Dolman et al.

Additional responsibility

For five of the studies analysed, the difference for staffwas the need to care for an infant as well as an adultpatient; however, the converse applied for the midwives inthe study of Wan et al. (2008), who found it challengingto care for a new mother who was also mentally ill. Forexample, asked to recommend an intervention for motherswith schizophrenia, a midwife responded: “I don’t knowenough about mental health…. I think generally peopleare more sympathetic to people that have a physicalillness … as opposed to mental illness” (p. 181). In thetwo Swedish papers analysing interviews with nurses ex-perienced in caring for women with PPP, the nurses foundthat “they need to address the relationship between thewoman and her child… [the nurse] becomes a model forthe patient of how to care for her baby… ‘and by sodoing I try to encourage this type of contact’” (Engqvistet al. 2007, p. 1337). The psychiatrists (Engqvist et al.2011a) describe being more involved with these womencompared with other patients “because there is so much atstake. It is not just a woman with psychosis but also herchild and its earliest experiences which are so extremely

important” (p. 77). Nicholson et al. (1998) reported thatcase managers “expressed a great deal of concern for thechildren” of mothers with SMI, and felt that the womendid not have enough resources to help them cope. Thiswas echoed by psychiatric nurses in the Maddocks study(2010): “I used to find it quite difficult because … youwant to support them but you have to think about thechild, you have to think about their safety, their future andtheir emotional needs as well” (p. 678). Psychiatric nursesquestioned on their feelings about caring for women withSMI in the perinatal period (McConachie and Whitford(2009) saw this as very challenging. They were “fright-ened about looking after babies” and felt insufficientlytrained: “No, I don’t do mothers and babies, no seriouslyI know my limitations, I would not take that on. I wouldfeel very uncomfortable” (p. 870).

Stigma

All studies referred to stigma as an issue. Wan et al.(2008) described “perceived ignorance and social stigmaattached to mental illness” as one of two overarchingthemes that recurred across topics and across the range

Table 4 The views of health professionals caring for women with severe mental illness: summary of papers

Author Date Title Qualityappraisalscore

Number of participants Method

Engqvist et al.(Sweden)

2007 Strategies in caring for women withpostpartum psychosis — an interviewstudy with psychiatric nurses

42 10 psychiatric nurses Interviews

2009 Psychiatric nurses’ descriptions of womenwith psychosis occurring postpartum andthe nurses’ responses — an exploratorystudy in Sweden

2010 Nurses — psychiatrists’ main collaboratorswhen treating women with postpartumpsychosis

52 9 psychiatrists Interviews

2011a Comprehensive Treatment of Women withPostpartum Psychosis across Health CareSystems from Swedish Psychiatrists’Perspectives

51 9 psychiatrists Interviews

Maddockset al. (UK)

2010 A phenomenological exploration of the livedexperience of mental health nurses who carefor clients with enduring mental healthproblems who are parents

McConachie adWhitford (UK)

2009 Mental health nurses’ attitudes towardssevere perinatal mental illness

48 16 psychiatric nurses 3 focus groups

Nicholsonet al. (USA)

1998 Focus on women: mothers with mentalillness: The competing demands ofparenting and living with mental illness

51 55 Mental HealthCase Managers

5 focus groups

Wan et al. (UK) 2008 The service needs of mothers withschizophrenia: a qualitative study ofperinatal psychiatric and antenatal workers

48 28:15 midwives, 7Reg. Mental Nurses,3 MBU nursery nurses,1 antenatal manager, 1obstetrician, 1 psychiatrist

Interviews

health

profession

alscaring

forwom

enwith

erienceof

profession

Viewson

serviceprov

Discomfort

edrespon

sibility

Stigma

Needforeducation

Integrationof

services

qviste

tal.(20

10psychiatricnu

interviewed

(9female

1male)

Needtocareforbaby

too+provide'amodel'

other,+educate

family

aboutpostpartum

psychosis

letreatm

entteam

needsto

co–op

erate.Nurse

actsas

coordinatin

gafter–care

qviste

tal.(20

9psychiatricnu

interviewed

(8female

1male)

8describ

edhaving

“stro

ngresponses”

including

“discomfort,

angerand

anxiety”

Needto

foster

mother's

relatio

nshipwith

manywom

en“disconn

ected”

.Feel'terrific

burden

andsenseof

respon

sibility'

educationneeded

toaddressnegativ

efeelings

towards

motherswith

SMI,help

develop

strategies

tocope

qviste

0)9psychiatrists

interviewed

(5male

4female)

Psychiatrists'ex

pressed

doubtsconcerning

ownpractice,andinsecurity

aboutm

akingthebest

treatmentd

ecisions'

Believednu

needed

toassess

interaction

betweenmotherandherchild

“Thisisno

troutine

care”nu

Outpatient

clinic

for6–

ths+collabo

centre.

portance

ofinvo

family

qviste

tal.(20

9psychiatrists

interviewed

(5male

4female)

Moreinvolved:focused

on'protectingwom

enwith

PPPfrom

suicide

andinfanticide'

forbaby

'ssafety

ofsuicide—

respon

sibleas

“somuch

atstake”

Keento

accurate

diagno

sis“asthis

diagno

siscanbe

stigmatizing”

Services

should

consider

providingsupportand/or

supervisionfor

professionalsin

thisfield

erscored

rtance

ofinclud

ingfamily

intreatm

anddischargeplanning

process

al.(20

6psychiatricnu

interviewed

(genderun

specified)

Unsurehowinvolved

patientsas

parents:“Ithink

alotofnursesarefrightened

ofit”

Awareof

protection

responsibilities:“you

tothinkabout[thechild's]

safety”

Worriedabouttheirlack

ofknow

ledgeandtraining

regardingchildren:“I'm

notconfid

entatitbecause

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of participant occupations (p. 182). Nicholson et al.(1998) quote a case manager saying: “It is always thestigma of being mentally ill. When [the mothers] go tothe hospital to give birth, people immediately assumethey cannot care for the child.” This stigmatizing atti-tude extended to healthcare workers and “sometimes ledto negative preconceptions among workers concerningthe abilities of mothers with SMI to be ‘good’ mothers,and to their negative treatment by workers”. Similarly,all three focus groups reported by McConachie andWhitford (2009) discussed the stigmatization of a men-tal health referral. They also raised the problem ofwomen manipulating their scores on the EdinburghPostnatal Depression Scale to avoid being seen as a“bad mother” and losing custody. Psychiatrists inEngqvist et al.’s (2011a) study felt extra pressure whendeciding on a diagnosis of PPP “as this disorder can bestigmatizing”. Thus medical professionals are aware ofthe stigmatization suffered by mothers with SMI, andare also aware of it occurring among health workers:“When somebody say schizophrenia, especially in mid-wifery, people get frightened because they think they’resymptomatic…. I think we need more awareness ses-sions for midwifery” (psychiatric nurse quoted in Wanet al. p179 (2008).

Views on service provision

Need for education

As may be seen from the quote above, some healthprofessionals saw a need for education as a means oftackling stigma, but other studies emphasised the otherareas training could address. The psychiatric nurses inMcConachie and Whitford’s 2009 study felt they neededmore specialized training to deal with mothers andbabies: “Caring for the women is alright – it is thebabies I don’t like (lots of laughter) it certainly poses achallenge. Assessing how she is caring for the child …we’re not qualified for that” (p. 870). The nursesinterviewed by Maddocks et al. (2010) felt ill-equippedto assess their clients’ parenting capacity: “I wouldn’tknow what to look for” (p. 679). The focus groups inWan et al. (2008) called for more psychiatric training formidwives as well as parenting education for patients, anda psychiatrist quoted in Engqvist et al. (2010) empha-sized that nurses caring for women with PPP needed tobe knowledgeable about the disorder: “This is not routinecare, the nurses must give top care to these patients” (p.498). Two other Swedish studies (Engqvist et al. 2009,2011a) brought out the theme of education as a means ofaddressing the anxiety suffered by professionals treatingT

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women with PPP: “It is important to address these issuesin nursing education and in clinical practice” (Engqvistet al. 2009). For the psychiatrists interviewed in the 2011study, peer supervision or support was suggested, andsome American case managers “suggested they them-selves were not provided with adequate support for deal-ing with these issues” and were keen to join with theirpeers in a focus group discussion (Nicholson et al. 1998p. 41).

Integration of services

This theme echoes some of the comments about discon-nected services made by women with SMI under thetheme Problems with service provision: “It’s good net-working that we require with the services – primarycare, the GP and if there’s been a CPN involved andthe health visitor and the midwife” (antenatal managerquoted in Wan et al. 2008, p. 180). Psychiatric nurses(McConachie and Whitford 2009) also identified problemswith sharing responsibility: “There isn’t any information shar-ing … unless they’re looking for us to do something” (com-munity nurse, p. 871). This was echoed in Maddocks et al.(2010): “social workers for children might not necessarilyhave that great an understanding of adult mental health andvice versa. There needs to be common ground” (p. 679). TheSwedish studies also emphasized the need for the wholetreatment team to collaborate: “I think that it is possible tocooperate for a patient’s sake with all the different staff and thevaried areas of expertise” (Engqvist et al. 2007, p. 1337). Theyalso underscored the importance of including the family in thetreatment plan and discharge planning process (Engqvist et al.2011a).

Discussion

Main findings

We found that, despite the heterogeneity of samples andmethods in these studies, it was clear that the experi-ence of motherhood evokes powerful emotions forwomen with SMI regardless of diagnosis or socio-cultural context. Indeed there is some evidence (Sands1995) that women with SMI valued motherhood morehighly than other women, perhaps because they hadlittle else positive in their lives, or because the fear ofhaving them taken away made them appreciate them allthe more. Thus although no studies reported data relatedspecifically to pregnancy, the vast majority of studies(19 of 23) emphasized the importance women attachedto becoming mothers, both in terms of their own self-esteem, and in the way that their children were central

to their existence, conferring benefits such as “love, pur-pose, identity and support” (Chernomas et al. 2000).However, we also found that for many women, being aparent with a major mental illness is associated with stigma,guilt, isolation and concerns over the impact of illness ontheir children or the possibility of custody loss: a pervasiveanxiety for many women in these studies. Consultationswith health professionals for pre-conception advice, ante-natal care or mental healthcare while parenting may there-fore be influenced by these underlying concerns even ifthey are not disclosed during interviews (Davies andAllen 2007).

Stigma was a particularly prominent theme whichmay impact on access to healthcare. The stigma associ-ated with mental illness was exacerbated by becoming aparent (Wilson and Crowe 2009) as women felt doublystigmatized — by some health professionals as well associety generally — because their capacity to be “agood mother” was automatically doubted (Chernomaset al. 2000; Davies and Allen 2007; Edwards andTimmons 2005; Khalifeh et al. 2009; Wilson andCrowe 2009). This concurs with a recent quantitativesurvey which found that people with a mental illnessrated “being seen as a bad parent” as the second mostimportant barrier to seeking psychiatric care (Clement etal. 2012). This recurring theme overlapped with theconsciousness of having “dual identities” as a mentallyill woman who was socially stigmatized and in need ofthe State’s help, while at the same time trying to fulfilthe idealized role of extremely competent, nurturing andselfless mother.

Within the overarching theme of Experiences ofServices, prominent sub-themes were the lack of conti-nuity of care and the need for childcare provision,especially in a crisis, confirming earlier findings fromsurveys (Howard and Hunt 2008; Howard et al. 2001).An unmet need for information was also evident as inother types of studies (Howard and Hunt 2008), and aneed for peer support, which might prove particularlyhelpful to this population, isolated by both the stigma ofmental illness and the need to care for an infant fulltime. Unfortunately, there is a scarcity of good qualityresearch on whether such support could improve socialnetworks and childcare.

The singular experience of women suffering fromPPP was evident in several themes. For women whohad never experienced mental illness before and hadanticipated a “perfect” birth, the chasm between expec-tation and reality was especially hard to bear. Thuscomments on Guilt, the Centrality of Motherhood andCoping with Dual Identities were plentiful from thisgroup of women, whereas they were far less likely totalk about suffering from isolation as they generally

C. Dolman et al.

reported strong family support (Doucet et al. 2012;Heron et al. 2012).

Health professionals’ views overlapped with women’sviews in terms of their consciousness of stigma. Non-psychiatrically trained groups, particularly midwives, ac-knowledged that ignorance and stigma affected the poor post-partum care given to women with SMI (Wan et al. 2008).They concluded the best way to tackle this problem would beto provide more education in mental health. Parenting supportwas suggested by both women with SMI and professionalscaring for them, which supports the quantitative literature onthis subject (Miller 1997; Nicholson and Blanch 1994). It haspotential as an intervention, though more research needs to bedone on the efficacy of such interventions for women withSMI (David et al. 2011).

The challenges of treating severely ill women togetherwith newborns, and the safety issues that presents, camethrough strongly in the health professional theme ofDiscomfort as well as in some professionals’ requests forextra training to help them cope more effectively (Engqvistet al. 2011a; McConachie and Whitford 2009). Other sug-gestions from professionals included peer support and su-pervision for perinatal psychiatrists, and more psychiatriceducation for midwives (Wan et al. 2008) and socialworkers (Maddocks et al. 2010). This desire for more spe-cialist training for the professionals was echoed in some ofthe patients’ interviews (Engqvist et al. 2011b; Heron et al.2012). This is pertinent to the current international debateover whether perinatal mental health services should bespecialist and whether women should be treated inspecialised mother and baby units as occurs, albeit spo-radically, in the UK. The results of this review supportthe assertion of The National Institute for Health andClinical Excellence that staff should receive training onmental disorders and women with SMI should normallybe admitted to a specialist mother and baby unit (NICE2007, p. 14). Internationally there is an increasing aware-ness of the special needs of women with mental illnessin the perinatal period, as evidenced by recent guidelineson the subject such as SIGN in Scotland (ScottishIntercollegiate Guidelines Network 2012) and “BeyondBlue” in Australia (beyondblue 2011).

Evidence gaps

This review highlights notable gaps in the literature, forexample, the absence of research on preconception viewson motherhood among women with SMI, and how men-tally ill women who lose their children can be supportedby services (Stanley and Penhale 1999). Some researchhas been done on the characteristics of women with SMIwho lose custody (Hollingsworth 2004) but little has beendone on women’s own experience of separation from their

children, the effect it might have on their illness (Dippleet al. 2002) and how professionals should acknowledgethis and respond appropriately (Sands 2004). The efficacyof parenting interventions for women with SMI and theusefulness of peer support for this group would alsobenefit from more exploration (Nicholson et al. 1993).

Limitations of review

The studies reviewed were heterogenous in samples, meth-odologies and context. As is usual in qualitative research,many of the studies have small sample sizes and several didnot interview a representative mix of women. The majorityof studies did not differentiate between diagnoses whenreporting results, so it was not possible to distinguish be-tween the views of women with different conditions.However the two papers exclusively about bipolar disorderand parenting revealed the development of a heightenedawareness of the need to self-monitor moods (Wilson andCrowe 2009); and the possible advantages of hypomanicenergy when parenting (Venkataraman and Ackerson 2008).More research is needed to determine whether specific di-agnoses present particular problems in the perinatal periodand early years of motherhood.

Conclusion and implications

The particular needs of women with SMI when they havechildren has tended to be overlooked by professionals(Howard 2006; Krumm and Becker 2006), but there isnow a growing literature on their views which is synthesizedhere. This is the first systematic review to give an overviewof the qualitative literature in the area of women’s mentalillness in relation to having children from pre-conception toparenting. Despite the heterogeneity of the studies includedhere, this review highlights the complexity of the challengesfacing women with SMI when they have children and theways in which issues such as stigma and fear of custody lossmitigate against the establishment of a meaningful therapeu-tic relationship with health professionals. Research intopossible interventions such as preconception counselling,parenting programmes and peer support is needed. The re-sults emphasize the central importance women with SMIassign to motherhood (David et al. 2011; Dipple et al. 2002),a fact that should not be underestimated when caring for thispopulation. This review also highlights the level of anxietyhealth professionals from different disciplines experiencewhen caring for women with SMI in the perinatal period,and some of the interventions, such as improved specialisttraining and workplace peer support, which might address it.

Acknowledgments The authors thank Kylee Trevillion (KT) for herhelp with quality appraisal.

Appendix

Quality Appraisal Form

Review ID:

Author Name:

Paper title:

Reviewer ID: CD

APPRAISAL

Please grade the answers to each question by ticking 0, 1 or 2. Unless otherwise specified, questions should be scored as follows: 0 – study does not meet criteria/answer question 1 – study partially meets criteria/gives a partially satisfactory answer to the question 2 – study fully meets criteria/gives a fully satisfactory answer to the question If a question is not applicable to a particular study, please mark “n/a” in the adjacent comments section.

1. The research presents clearly stated aims

Question Comments Score0 1 2

Is the study question focused in terms of the population studied?

Is the study question focused in terms of the outcomes considered?

Q1 Subtotal ………………..

2. A qualitative methodology is appropriate for this research (e.g., does the research seek to interpret or illuminate the actions and/or subjective experiences of research participants?)

Was a qualitative methodology appropriate?

C. Dolman et al.

Continue only if score on each of questions 1 and 2 is one or more

3. The context of the research was clearly described

erocSstnemmoCnoitseuQ0 1 2

Was the context of the research clearly described?

4. The research design was appropriate to meet the aims of the research

Was the research design appropriate to address the aims of the research?

Q4 Subtotal ……………….

5. Was the recruitment/sampling strategy appropriate to the aims of the research?

Does the study have clear inclusion criteria? Does the study have clear exclusion criteria? Was the sampling strategy appropriate for the aims of the research?Were the subjects appropriate for the aims of the research? Was the study sample representative of the research setting? Does the study report on the level of non-participation?

6. Was the data collected in a way that addressed the research issue?

Is the study setting appropriate to the aims of the research? Is the method of data collection clear? Is the method of data collection appropriate to the aims of the research?Is the process of data collection clear? Were study instruments piloted? Is data saturation discussed?

Comments Score0 1 2

Is the data verifiable? N.B. Data is audio or video taped (=2), researcher makes notes during data collection (=1).

C. Dolman et al.

8. Were ethical considerations appropriately considered?

Did researchers obtain informed consent from all participants? Was data collected in a private setting?

Was data sufficiently aggregated during presentation to ensure anonymity?

9. Was data analysis sufficiently rigorous?

Is the analytical process described in detail? Were steps taken to identify data that was contrary to the main findings and hypotheses of the study? Were multiple analysts used to increase the rigour of the research? Does the study report on level of inter-rater reliability?

10. Was there a clear statement of findings?

Does the study clearly report its findings?

11. How valuable was the research?

Were service users, providers or advocates involved in the development of the study? Were study participants invited to receive feedback on the research? Were the study findings disseminated beyond the academic community?

C. Dolman et al.

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C. Dolman et al.

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