Anti-psychotic medication decision making during pregnancy: a co-produced research study

Pages69-84
Date02 July 2019
Published date02 July 2019
DOIhttps://doi.org/10.1108/MHRJ-04-2017-0018
AuthorVanessa Pinfold,Ceri Dare,Sarah Hamilton,Harminder Kaur,Ruth Lambley,Vicky Nicholls,Irene Petersen,Paulina Szymczynska,Charlotte Walker,Fiona Stevenson
Subject MatterHealth & social care
Anti-psychotic medication decision making
during pregnancy: a co-produced
research study
Vanessa Pinfold, Ceri Dare, Sarah Hamilton, Harminder Kaur, Ruth Lambley, Vicky Nicholls,
Irene Petersen, Paulina Szymczynska, Charlotte Walker and Fiona Stevenson
Abstract
Purpose The purpose of this paper is to understand how women with a diagnosis of schizophrenia or
bipolar disorder approach medication decision making in pregnancy.
Design/methodology/approach The study was co-produced by university academics and charity-based
researchers. Semi-structuredinterviews were conducted by three peer researchers who have used anti-psychotic
medication and were of child bearing age. Participants were women with children under five, who had taken
anti-psychotic medication in the 12 months before pregnancy.In total, 12 women were recruited through social
media and snowball techniques. Data were analyzed following a three-stage process.
Findings The accounts highlighted decisional uncertainty, with medication decisions situated among multiple
sources of influence from self and others. Women retained strong feelings of personal ownershi p for their
decisions, whilst also seeking out clinical opinion and accepting they had constrained choices. Two styl es of
decision making emerged: shared and independent. Shared decision making involved open discussion, active
permission seeking, negotiation and coercion. Independent women-led decision making was not always
congruent with medical opinion, increasing pressure on women and impacting pr egnancy experiences. A
common sense self-regulation model explaining management of health threats re sonated with womens accounts.
Practical implications Women should be helped to manage decisional conflict and the emotional impact
of decision making including long term feelings of guilt. Women experienced interactions with clinicians as
lacking opportunities for enhanced support except in specialist perinatal services. This is an area that should
be considered in staff training, supervision, appraisal and organization review.
Originality/value This paper uses data collected in a co-produced research study including peer researchers.
Keywords Pregnancy, Psychosis, Medication, Peer research, Co-production,
Decision making, Decisional conflict
Paper type Research paper
Introduction
The UK Government is prioritizing maternal mental health (Department of Health, 2012a; Mental
Health Taskforce, 2016), with the costs of perinatal mental ill-health estimated at £8.1bn for each
annual birth cohort, or almost £10,000 per birth (Bauer et al., 2014). The influence of fathers on
child mental health is also beginning to be recognized, including their active involvement in the
perinatal period supporting mothers (Khan, 2017). This paper uses data from a qualitative
interview study to explore how women managing schizophrenia or bipolar disorder make
decisions about anti-psychotic medication use in pregnancy. The context is limited availability of
information for women or clinicians to guide decision making, balancing risks to mother and baby
(Stevenson et al., 2016). There are no anti-psychotic medications with UK licensing authorization
specifically for women who are pregnant or breastfeeding (NICE, 2014).
The challenges tha t mothers with men tal health proble ms can experienc e, which include
feelings of guilt , problems coping w ith health diffi culties, fear over losing custod y of children
and stigma, can start in pregnancy (Diaz-Caneja and Johnson, 2004; Jones et al., 2014).
Received 24 April 2017
Revised 3 April 2018
2 May 2018
3 May 2018
2 January 2019
Accepted 17 February 2019
© Vanessa Pinfold, Ceri Dare,
Sarah Hamilton, Harminder Kaur,
Ruth Lambley, Vicky Nicholls, Irene
Petersen, Paulina Szymczynska,
Charlotte Walker and Fiona
Stevenson. Published by Emerald
Publishing Limited. This article is
published under the Creative
Commons Attribution (CC BY 4.0)
licence. Anyone may reproduce,
distribute, translate and create
derivative works of this article (for
both commercial & non-
commercial purposes), subject to
full attribution to the original
publication and authors. The full
terms of this licence may be seen
at http://creativecommons.org/
licences/by/4.0/legalcode
The authors would like to thank all
the women who took part in this
study and are very grateful to the
reviewers for their helpful
comments on earlier drafts of the
manuscript. The funding for this
research was from the National
Institute of Health Research Health
Technology Assessment Risks
and benefits of psychotropic
medication in pregnancy(Grant
No. 11-35-06). The involvement of
the peer researchers in paper
writing was resourced by the
McPin Foundation (registered
charity 1,117,336).
(Information about the authors
can be found at the end of
this article.)
DOI 10.1108/MHRJ-04-2017-0018 VOL. 24 NO. 2 2019, pp. 69-84, Emerald Publishing Limited, ISSN 1361-9322
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Many women managin g mental health pro blems feel empower ed and confident i n their
reproductive decision making, but others can feel overwhelmed without adequate support
(Krumm and Becker, 2006). Understanding how women, their families and clinicians make
decisions over med ication use in pregnancy, and the sup port and information they need to do
so, may help improve womens experiences of services, pregnancy and motherhood (Dolman
et al., 2013; Perera et al., 2014).
A shared ownership of decisions and responsibilities between service users and clinicians has
been recommended, to build trust and encourage planning for parenting successnot failure
(Fox, 2012; Adams et al., 2007), and to help manage disagreements openly and constructively
(Deegan and Drake, 2006). Shared decision making is dominant in policy guidance (Department
of Health, 2012b; Mental Health Taskforce, 2016) but implementation in practice requires
changes in approach at both individual and system levels. Achieving concordance through
partnership working in communication about medications has been shown to be challenging
across health care, where clinicians tend to dominate consultations (Stevenson et al., 2004). In
mental health, the ever present power to detain a person against their will using the Mental Health
Act can undermine partnership and collaborative working (Seale et al., 2006). Practitioners are
obliged to follow guidance around best interestsof the mother and to also take into account
capacity to make decisions following the UK Mental Capacity Act. Recent qualitative work
describing in detail meso- and macro-level influences that can undermine the implementation of
shared decision-making tools (Brooks et al., 2017). The same project reported agreement
between stakeholders that shared decision making necessitates collaboration, but found service
users and carers did not generally experience this within anti-psychotic prescribing practices
(Harris et al., 2017). Previous research observed shared decision making practices in 92
consultations concerning anti-psychotic medication and found varying degrees of pressure being
applied in practice (Quirk et al., 2012).
Research on antidepressant use in pregnancy has reported how many women facing medication
decisions experienced moderate to high levels of decisional conflict (Walton et al., 2014).
Decisional conflicts arise when there is personal uncertainty over which course of action to take
because of internal dilemmas generated by differing opinions, often in the context of limited
information. Service users and clinicians can impact on each others decisional conflicts.
Inadequate service user involvement within consultations over clinically significant decision
making can generate personal uncertainty in patients (Thompson-Leduc et al., 2016). Leventhal
et al.s (2003, 2007) common sense model of self-regulation describes how people draw on their
own experience and identity, their perception of the illness threat and their understanding of the
cause of the illness to determine a course of illness management action. For women with a
previous mental health diagnosis, self-regulation is therefore informed by past experiences of
ill-health including relapse, personal identity formations in relation to mental health problems,
motherhood and other aspects of social identities including family, their own understandings of
the cause of mental health problems and the perceived efficacy of different management
techniques including medication (Baines and Wittkowski, 2013). During or when planning
pregnancy, self-regulation is also influenced by culturally informed expectations on women to
take responsibility for the health of a foetus through risk averse behavior including what they
consume and activity levels (Lupton, 2012).
This paper presents a co-produced analysis of womens accounts of anti-psychotic medication
decision making during pregnancy. The focus is on how decisions are made and the role of
others in the process.
Methods
The study was developed by a team of four women in the role of peer researchers, drawing on
their experiences of mental health service use (CD, HK, CW, RL) university researchers (FS, IP),
and members of a research charity (VP, SH, PS, VN). The former group were recruited as
members of a lived experience advisory panel for a project which used primary care electronic
health records to examine risks and benefits of anti-psychotic medication (Petersen et al., 2016).
Co-production in research recognizes the different expertise of individual team members in terms
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