Understanding the emotional and practical needs of parents with psychosis and those of their children.
Children and Young People's PhD Scholarship 2018: Department of Psychiatry, University of Oxford,
Supervisor: Dr Louise Johns, with Professor Jane Barlow as co-supervisor
Healthcare policy prioritises early help for vulnerable children, to improve current and future wellbeing. Children of parents with psychosis are particularly vulnerable, with increased risk of developing social and psychiatric problems. Parental mental health can impact on parents’ capacity to offer the consistent, responsive care required for healthy child development. Parents may not recognise these difficulties, or fear that their children will be removed from them, and hence do not seek help and their familial needs are poorly understood. This DPhil project will conduct a series of studies to investigate the specific needs of young children (aged 3-11) who have a primary caregiver with psychosis. It will collect information about the clinical and social circumstances of these families, and will interview parents with psychosis and their children (young and grown up) about their difficulties and support needs. The project will record parent-child interactions in a structured play situation, to understand the quality of these relationships. The study will also test associations between parenting stress, psychosis expression, and parenting behaviours in daily-life, via brief self-reports at intervals over a week. This research is an important first step in the development of psychological intervention approaches for these families, to increase positive parenting and quality of parent-child relationships, to improve health outcomes for this vulnerable group of children.
Research Student: Jessica Radley
Hi, I’m Jess and I’m due to start my DPhil in Psychiatry at the University of Oxford in October 2018.
My original background is in Linguistics, but after taking a module in psychology in my third year I decided to complete a psychology conversion MSc at the University of Edinburgh. For my dissertation, I performed a meta-analysis on the prevalence of depression in schizophrenia spectrum disorders. This year, I have been working as a research assistant at North East London NHS Foundation Trust on an NIHR-funded project trialling a computer-based intervention for children with social communication impairment.
I am excited to be pursuing a PhD related to both psychosis and children. My research project will be investigating the needs of parents with psychosis and the needs of their children. I look forward to being supervised by Dr Louise Johns and Professor Jane Barlow and to the chance to develop my research knowledge and skills. I am also very thankful to Mental Health Research UK for funding this opportunity.
Start Date: September 2018
The scientific goal is to identify the specific needs of parents with psychosis, the needs of their children, and the inter-relationship between them. This knowledge will inform the development and delivery of tailored interventions for these families.
Progress Report Year 2, 2020
I began my second year by attending the Oxford-Berlin Open Science course for early career researchers in September 2019. Open Science is something I was passionate about even before beginning my PhD so I was very excited to attend this course. Presentations and workshops were held on the topics of preregistration of research ideas, the importance of reproducing others’ experiments, biases that are frequently found in psychology, and how to publish your work ‘Open Access’ so as many people as possible can read it without having to pay.
I completed my qualitative interviews in November and in total had conducted twelve interviews with parents with psychosis, four with the partners of these parents, and four interviews with their children. I also conducted three focus groups with nineteen healthcare professionals who work with these parents and four retrospective interviews with adult children who had been raised by a parent with psychosis. I plan to do a number of analyses with these interview data. The first two analyses that I have completed are thematic analyses of data from the interviews with parents with psychosis and with the focus groups of healthcare professionals. My supervisors and I have reviewed discussed the results in detail, and I am currently writing a paper to submit for publication this year.
In February 2020, I published the protocol for my systematic review with Cochrane Schizophrenia. This systematic review aims to determine what parenting interventions currently exist for parents with psychosis, and what their effectiveness is. My co-author, Claire, and I have since been through the papers considered in the review and plan to publish the full report later this year.
When I started working at home in March due to covid-19, I took the opportunity to start more data cleaning with CRIS, the Clinical Record Interactive System. I will soon be in a position to produce the final results on how many patients with psychosis in Oxford Health NHS Foundation Trust (OHFT) have children, and the demographic and clinical characteristics of this group. Covid-19 has slightly delayed when I will start recruiting for my ESM study, due to the requirement to amend the protocol. The study has passed ethical review and my supervisor and I have made amendments so that participants are able to complete most elements of the study virtually. I plan to start recruitment for this at the end of the summer.
As well as my academic work, I was trained in Behavioural Family Therapy (BFT) with the Early Intervention in Psychosis Team at OHFT. Alongside another family worker, I now deliver weekly one-hour BFT sessions.
Publications: Radley, J., Grant, C., Barlow, J., & Johns, L. (2020). Parenting interventions for people with schizophrenia or related serious mental illness. Cochrane Database of Systematic Reviews, (2).
Progress report Year 1, 2019
I wanted to start my PhD from the ground up by interviewing the people who are at the heart of my research topic, namely parents with psychosis, their partners, and their children. In March 2019, I gained approval from the University of Oxford ethics committee to conduct these interviews and as of August 2019, I have interviewed seven participants about their experience of being a parent who has experienced psychosis. I am in discussion with some of these parents about also interviewing their partners (or close family members) and children, which will hopefully add an interesting layer to my research findings.
I chose to conduct this project using Grounded Theory, which has meant that I’ve been able to steer the project through what has appeared in the analysis. So far, I have found it easier to recruit women and also those from Early Intervention services, which has meant that I have mostly heard about the experiences of mothers who have had only one episode of psychosis. Therefore, I am now trying to recruit from different teams where the service users will have had multiple episodes of psychosis and may have a diagnosis of schizophrenia. From these discussions, I hope to understand what it is like for those parents who are more familiar with managing their psychosis, and whether there are differences between these service users.
Alongside this, I have been working with some big data using CRIS, the Clinical Record Interactive System, which allows researchers to access anonymised patient data. I am searching for anybody with a diagnosis of psychosis and then seeing how many of those people have children. There has been more missing data than expected so it has taken some time to search through clinical notes in the hope of obtaining details of potential children. Once I have built up a database of patients and their dependants, I will start to look for factors that predict having children, such as being female or being over a certain age.
Outside of my research, I have also had the opportunity to attend a number of training courses. At the beginning of my course, I attended a course by The Association for Child and Adolescent Mental Health on ‘Parental Mental Illness’ in order to hear about the effect of parental psychosis from a child’s perspective. This gave valuable insight into the realities of these experiences. I have also attended week-long courses in both interview skills and statistics, delivered at my university. In March, I had the opportunity to attend a workshop on Experience Sampling Methodology (ESM), which I hope to use later in my research. When ESM is used in a study, participants are asked to rate their thoughts and feelings at a specific moment, rather than having to reflect overtime. Using this method can help researchers better understand small changes overtime and reflect on patterns.
For the next stage of my PhD, I intend to use ESM in a novel way by integrating the technology into smartphones to investigate the relationship between the stress of parenting and experiencing psychotic symptoms. Each participant would be asked to use a smartphone to record their symptoms and stress levels over a two week period, with automated messages reminding them to complete the assessments. I have received a £750 grant from the NIHR to do some PPI (Public and Patient Involvement) work to inform my ESM study, which will hopefully involve some small group discussions in November this year.