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.
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Vanessa Pinfold and Toni Borneo
Vanessa Pinfold and Toni Borneo describe the successes of the Rethink anti‐discrimination campaign in Norwich, which aimed to test out ways to challenge negative public attitudes…
Vanessa Pinfold, Joan Rapaport and Sophie Bellringer
This article highlights the importance of information‐sharing in mental health care and in particular the difficulties that can follow when practitioners do not perceive lay…
Abstract
This article highlights the importance of information‐sharing in mental health care and in particular the difficulties that can follow when practitioners do not perceive lay carers as ‘partners in care’. The findings of a survey, in which views were sought on poor information‐sharing as a barrier to engagement in mental health services, are reported. The authors conclude with a number of recommendations on improving the way information is shared.
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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.
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Alan Quirk, Sarah Smith, Sarah Hamilton, Donna Lamping, Paul Lelliott, Daniel Stahl, Vanessa Pinfold and Manoharan Andiappan
A psychometrically validated measure is needed to evaluate outcomes in carers of people with mental health problems, including dementia. This study aims to develop and validate…
Abstract
Purpose
A psychometrically validated measure is needed to evaluate outcomes in carers of people with mental health problems, including dementia. This study aims to develop and validate the Carer well‐being and support questionnaire (CWS).
Design/methodology/approach
Development and evaluation of the measure was conducted in three phases. The authors deconstructed an existing questionnaire (CUES‐C) to produce a long version measure. This was trialed with carers to reduce the number of items and a preliminary evaluation of the psychometric properties of the remaining items was undertaken. A second field test was conducted with the item‐reduced questionnaire measure to evaluate acceptability, reliability and validity.
Findings
The CWS well‐being scale shows moderate acceptability and good reliability and validity. The CWS support scale shows moderate acceptability and good reliability; validity testing for the support scale is limited by the lack of appropriate validating measures.
Practical implications
The CWS is a reliable, valid measure of carer well‐being and support, reflecting important aspects of carers' lives.
Originality/value
This paper provides researchers and practitioners with a tool that can be used to measure and address areas of support for carers. This is important in assessing the effectiveness of new interventions and approaches.
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Co-production is becoming a more widely used term in mental health care in England, but it is not always clear what this means nor what the evidence base is behind particular uses…
Abstract
Purpose
Co-production is becoming a more widely used term in mental health care in England, but it is not always clear what this means nor what the evidence base is behind particular uses of the concept. The purpose of this paper is to set some of this discussion into a historical context and examine some of the relevant evidence base to begin to highlight the challenges with operationalising more co-production. This is by way of setting the scene for the other articles in this special edition of the journal. The paper then provides an overview of the other articles on co-production in this edition.
Design/methodology/approach
The paper is a short review and discussion of some key issues and evidence relevant to co-production in mental health.
Findings
Some key historical insights from other moves to transform mental health care are discussed, recognising that these developments can take a long time to reach maturity in services and practice across the whole country. The discussion of some pertinent research and of the other articles in this special edition helps to highlight what foundations the author have in place for greater co-production in mental health care, and what remains as some of the challenges and gaps in the knowledge.
Originality/value
The paper provides a historical overview of some key issues, evidence and lessons pertaining to moves to develop more co-production in mental health.
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This index covers all issues between February 2005 (Volume 9, Issue 1) and November 2008 (Volume 12, Issue 4). Numbers in bold refer to yolume, numbers in brackets refer to issue…
Abstract
This index covers all issues between February 2005 (Volume 9, Issue 1) and November 2008 (Volume 12, Issue 4). Numbers in bold refer to yolume, numbers in brackets refer to issue, with subsequent numbers to pages.
Michael Clark, Susan Benbow, Vanessa Scott, Neil Moreland and David Jolley
The important initiative from the Department of Health (Working Group on Copying Letters to Patients, 2002) to require that letters between clinicians should be copied to the…
Abstract
The important initiative from the Department of Health (Working Group on Copying Letters to Patients, 2002) to require that letters between clinicians should be copied to the patient has not been implemented as widely as was intended. There have been concerns about logistics and fears that patients might be confused or frightened by communications they are not equipped to understand. Yet, modifications of the system to allow patients the choice to receive or not receive such letters and suitable training for clinicians offer safeguards. There is no doubt that copying letters provides an inexpensive mechanism for involving patients in their own care and treatment, offering transparency and confirming respect for equality in the relationship between patient and clinician. This paper reports experience with copying letters to patients and families with dementia. The process was warmly received by patients and carers, including families in a black and minority ethnic (BME) community, and few adverse comments were made. The routine application of this initiative will have benefits for the quality of service experience for older people, including those with dementia.