Vanessa Pinfold, Ceri Dare, Sarah Hamilton, Harminder Kaur, Ruth Lambley, Vicky Nicholls, Irene Petersen, Paulina Szymczynska, Charlotte Walker and Fiona Stevenson
The purpose of this paper is to understand how women with a diagnosis of schizophrenia or bipolar disorder approach medication decision making in pregnancy.
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-structured interviews 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 ownership for their decisions, whilst also seeking out clinical opinion and accepting they had constrained choices. Two styles 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 pregnancy experiences. A common sense self-regulation model explaining management of health threats resonated with women’s 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.
Details
Keywords
Vanessa Pinfold, Paulina Szymczynska, Sarah Hamilton, Richard Peacocke, Shirley Dean, Naomi Clewett, Jill Manthorpe and John Larsen
The purpose of this paper is to reflect on the process of co-producing mental health research where work was shared between university academics, charity-based researchers and a…
Abstract
Purpose
The purpose of this paper is to reflect on the process of co-producing mental health research where work was shared between university academics, charity-based researchers and a Lived Experience Advisory Panel.
Design/methodology/approach
The authors express the opinions of a research team made up of people with experience of using mental health services, being carers and being academically trained researchers from a range of health and social science disciplines. Some had experience in several areas. The paper is co-produced to provide collective reflection and recommendations.
Findings
Co-production of research is not well documented in published literature. The authors believe there is scope to develop co-production approaches, but further conceptual and theoretical work is needed alongside empirical studies. A socially situated complex research project, possibly involving multi-stakeholder groups, demands flexibility in approach. Similarly to user-controlled and other emancipatory methodologies, co-production makes the democratisation of research a primary objective in order to produce better quality and more relevant studies. Co-production also addresses inequalities in power and control within research projects; this way of working does provide a healthy challenge to traditional research hierarchies.
Practical implications
Lessons learned should be honestly shared to develop co-production research methods. Projects need to have a strategy for how to value different contributions and facilitate constructive relationships if discord emerges. Establishing clear project roles, expectations and process for payment are essential in developing genuine collaborative partnerships.
Originality/value
It is a viewpoint paper.