Award Title: Suicidal ideation, homicidal ideation, and self-harm in parent carers.
Funder: Department of Health and Social Care

Abstract: Background  Emerging research suggests family carers are a high-risk group for suicide, homicide, and self-harm. Only three studies, however, have focused on parent carers and none were conducted in the UK. More than 800,000 children in the UK have disabilities and long-term illnesses and the majority are cared for by their parents.     Aims and Objectives  Aim: Conduct the first UK study of suicidal ideation, homicidal ideation, and self-harm in parent carers.  Objectives:    Estimate the rate of suicidal ideation, suicide attempts, and self-harm.  Identify risk and protective factors for suicidal ideation, suicide attempts, and self-harm.  Explore the lived experience of suicidal ideation and attempts, homicidal ideation and attempts, and self-harm.  Identify carers  recommendations for research, practice, and policy.  Provide a foundation for sensitive, evidence-based initiatives for at-risk carers and the social care professionals who support them.      Methods  The study has a sequential explanatory mixed-methods design, with two interrelated stages. It was co-created with parent carers and social care professionals. Four carers are co-investigators.  Stage One: A cross-sectional survey of 1,000 parent carers. The survey will include questions on parent and child demographics, the nature and extent of the disability/illness, and the nature and extent of care provision, plus measures of suicidality, self-harm, and psychosocial variables. For legal and ethical reasons, questions about homicidal ideation and attempts will be included in Stage Two only. Descriptive analyses will identify rates of suicidal ideation, suicide attempts, and self-harm. Independent t-tests and chi-square tests will identify differences between suicidal and non-suicidal carers, and self-harming and non-self-harming carers. Regression analyses will identify risk and protective factors.  Stage Two: In-depth interviews with 20 parent carers. The topic guide will be informed by existing research and preliminary analysis of the survey data. Interviews will be audio recorded and transcribed verbatim. Transcripts will be analysed using case-centred, narrative thematic analysis to: understand lived experience; identify critical situations and turning points in the caring journey related to suicide, homicide, and self-harm; and, identify carers  recommendations for research, practice, and policy.  Safeguarding and risk response protocols will ensure the safety and wellbeing of carers, care recipients, and the research team. The team has experience conducting research on sensitive topics and with vulnerable populations, and their previous research has informed policy and practice.     Timeline & Support  The study will take 24 months. A Parents and Partners Network and an Advisory Group will provide strategic guidance and support.     Dissemination & Impact  The findings will be published in academic journals and presented at a childhood disability conference. Lay summaries, policy briefings, short films, mainstream media, and social media will be used to disseminate the findings to government departments, clinicians, social care providers, schools, charities, and carers. This will: raise awareness; encourage help-seeking; strengthen advocacy; facilitate reviews of existing policy and practice; and provide justification and recommendations for additional support for at-risk parent carers. A subsequent application for an NIHR Programme Grant will support the development, evaluation, and implementation of sensitive interventions for at-risk carers and training for social care professionals.

Lay Abstract: Family carers make a valuable social and personal contribution, but they receive little support and the role takes a serious toll on their wellbeing. A growing body of research also suggests that many carers may self-harm and consider killing themselves or the person for whom they care. Only three of these studies, however, have focused on parents caring for children with disabilities or long-term illnesses (DLTI), and none were conducted in the UK.  More than 800,000 children in the UK have DLTI and their parents may be at greater risk of suicide, homicide, and self-harm than other family carers.   The aim of our project is to estimate how many parent carers in England have thought about and/or attempted suicide, and how many self-harm. We also want to identify the factors that contribute to and protect against these thoughts and behaviours. (Note: For legal and ethical reasons we will not be able to determine how many parent carers have thought about or attempted homicide). Finally, we want to understand the everyday experiences of parent carers who have considered suicide, considered homicide, or self-harmed, and seek their suggestions for research, practice, and policy. This information will ultimately allow us to develop better strategies for supporting carers in crisis.   We will conduct an anonymous survey of 1,000 parent carers in England. We will also conduct face-to-face interviews with 20 of these carers. Carers will choose whether they complete the survey online or as a hard copy. Carers will also choose whether the interview is conducted in their home or another quiet location. Carefully developed protocols will ensure parent carers, their children, and the research team are supported and kept safe throughout the project.   We have spent the last year working closely with parent carers and social care professionals to develop this project. To ensure the research continues to be informed by their needs and experiences, four of the carers have become co-investigators. They will be equal members of the research team, contributing at every stage. The wider group of carers and professionals have formed a network to oversee the project and will be consulted at regular intervals.   Our team has extensive experience conducting research on family care, disability, suicide, homicide, and self-harm. We will share the findings with the wider community – including carers, social care professionals, and policy makers – via easy-to-read summaries, policy briefings, short films, and a project website. We will share the findings with other researchers via academic journal articles and conference presentations. After this study is complete, we will apply for an NIHR Programme Grant for Applied Research to develop sensitive, evidence-based supports for at-risk carers and training for social care professionals.

Research Activity Codes: 7.1 INDIVIDUAL CARE NEEDS
Health Categories: MENTAL HEALTH