Investigating the relationship between caregiver reports of domestic violence exposure and health morbidity in a representative sample of English population.

This is an extension request to the Data Sharing Agreement until 19th June 2023 to enable sufficient time for the applicant to complete remaining planned analyses. As a necessary precaution, it will also ensure that the applicant has sufficient time to make changes to analyses, in the case that additional analyses, or minor amendments to current analyses, are requested during the PhD Viva examination and/or during peer-review of the manuscript for publication.

King’s College London (KCL) has previously had access to APMS 2007 and 2014 data to enable its use in a doctoral (PhD) research project. This project’s overarching aim is to investigate patient-initiated violence in informal caregiving relationships, in the context of severe mental health conditions and will comprise four individual studies. As a forerunner to the study programme, the first study (study 1) intends to investigate the relationship between caregiver reports of domestic violence exposure and health morbidity in a representative sample of English population. To this end, study 1 seeks to use both the 2007 and 2014 APMS datasets in order to examine patterns of reported domestic violence, and to explore possible associations between these reports and differences in the reported health outcomes of caregivers who do and do not report experiences of domestic violence, and compared to non-carer populations. This project is being conducted within the Psychology Department at KCL’s Institute of Psychiatry, Psychology and Neuroscience (IoPPN).

This doctoral project was proposed by researchers at KCL and KCL will be the only Data Controller and also processes the data for this study. No other organisations process the data for this purpose. All research analyses will be conducted at KCL. As such, only KCL will have access to record-level data. This will only be enabled through secure, password protected KCL computers, operated by the PhD student (undertaking the doctoral research project) and the project supervisors (named above). This doctoral studentship has received full sponsorship (National Institute of Health Research Senior Investigator (SI) Award, and KCL Department of Psychology funding).

The overall research project aims to address existing gaps within the literature on the relationship between informal caregivers and violence exposure and particularly within severe mental health conditions, such as psychotic disorders. Considerable progress has been made with respect to improving understanding of key patient risk factors associated with the perpetration of violence in psychotic disorders. These factors include younger patient age, substance use, experiencing hallucinations, and persecutory delusions. It has also been well established within the literature that victims of patient-initiated violence are most often known to the perpetrator. Despite evidence highlighting that the relatives of patients, rather than strangers, are more commonly targets of patient-initiated violence, understanding of both family factors associated with this violence and the impact of violence on relatives is limited. This is due to research efforts, to date, having focused predominantly on the identification of patient risk factors.

Previous work undertaken by the research group overseeing the PhD has investigated national survey carer mental health, caregiver reports of patient violence in early and longer-term psychosis groups. However, the implications of patient violence for family functioning and the ways in which informal carers make sense of violence related events have been relatively unexplored. Some prevalence studies have estimated that patient-initiated violence towards carers of people with psychosis occurs in approximately 50-60% of informal caregiving relationships. This high lifetime prevalence rate necessitates an improved understanding of both person-based factors and contextual factors which may serve to increase the risk of carers being targets of patient violence. An improved understanding of these factors might be harnessed to inform the development of clinical interventions designed to reduce the frequency of violence and its negative impact on families and to optimise outcomes for patients and their family members. Extending previous work, the four studies set out in this doctoral project propose to improve understanding of the issues faced by individuals providing informal care generally, and those informal caregivers of patients with severe mental health conditions, including psychotic disorders. This understanding will be used to inform the development, and evaluation, of a psychological, family-based intervention aimed at reducing violence and its negative impact within the family.

The lawful basis for processing in this instance is GDPR Article 6(1)(e) ‘public task’ whereby processing is necessary to perform a task in the public interest. The processing of special category data can be justified under GDPR Article 9(2)(j), where processing is necessary for archiving, research and statistics (with a basis in law). This research is in the public interest because the processing of this data may yield benefits for the users of mental health services, carers/family members of people with mental illness, mental health professionals, and wider society. In addition to this processing may allow the identification of specific groups at relatively greater risk of domestic violence perpetration and/or victimisation.

The first study, for which KCL are seeking access to the APMS 2014 dataset, aims to examine associations between caregiver reports of domestic violence exposure and health morbidity using APMS 2007 and 2014 data. Data will be used by KCL to enable comparisons between 3 key groups: (a) carers reporting experiences of domestic violence; (b) carers reporting no domestic violence; and (c) non-carer populations. Primary analyses will be conducted to explore differences among these 3 groups across a range of reported physical and mental health outcomes (these will include psychiatric symptomatology; reported health conditions; mental wellbeing and quality of life). Secondary analyses will explore differences between these groups in reported outcomes pertaining to other life domains (including alcohol and substance use; social support and support networks). Of importance, the 2014 survey yields greater detail in relation to the ‘caring responsibilities’ section. Specifically, the 2014 survey gathered data on the type of relationship between the patient and carer (e.g. mother, partner, etc.), and the living situation of the dyad (co-residing; living separately). This information will therefore be used to explore whether severity of outcomes (listed above) differ as a function of the living situation or type of relationship. Finally, analyses will be conducted to investigate potential differences in outcomes depending on carer demographics (i.e., whether the severity of reported outcomes differ as a function of carer’s age, gender, ethnicity, education level, and socio-economic status).

The main research questions are:

1. Do carers reporting a history of domestic violence in comparison to carers reporting no violence and non-carers, report poorer health outcomes?

2. Do carers reporting a history of domestic violence, in comparison to carers reporting no violence and non-carers, report poorer outcomes in other lifestyle domains such as alcohol and substance use, social support networks, social capital and participation, stressful life events, and debt?

Secondary research questions are:

1. In carers exposed to violence, does the severity of carer outcomes differ depending on the type of relationship between patient and carer, and the living situation of the patient and carer?

2. In carers exposed to violence, does outcome severity differ depending on the carer’s demographics (i.e., do sub-groups of carers (differing on demographics) report poorer outcomes, e.g. female carers > age 60)?

3. To what extent can carer social networks and social capital improve understanding of informal caregiving and domestic violence?

The Adult Psychiatric Morbidity Survey collects a vast amount of insightful data which is of key relevance to the proposed project’s objectives. Therefore, obtaining this data for analysis will enable achievement of the stated aims of the project. The relevant topic areas assessed in the APMS survey include:

• Caring responsibilities (frequency of care; carer and patient relationship; living situation)

• Socio-demographic variables of self-identified carers (e.g. age; gender; education level)

• Experiences of domestic and sexual abuse

• Measures of mental and physical health (e.g. psychiatric symptomatology (CIS-R); common mental disorders; physical health; mental wellbeing)

• Stressful life events

• Debt

• Alcohol and substance use

• Medication and service use

• Social support networks

• Social capital and participation

APMS 2014 data are therefore being requested from NHS Digital in order to fulfil the aims of study 1, outlined above. The data requested will be used for the purpose(s) of this project only and will not be used for any wider projects, associated work or follow-up work. The data will not be used for any commercial purposes, it will not be provided in record-level form to any third party and will not be used for direct marketing.

The 2014 APMS data set is held on behalf of NHS Digital by the UK Data Service (UKDS) (www.ukdataservice.ac.uk) and the UKDS is responsible for dissemination under direction by NHS Digital. King's College London will receive the pseudonymised APMS data set. There is no facility to select individual variables. KCL will be able to download the data set from UKDS for the period specified within the Data Sharing Agreement and must securely destroy all local copies of the data set when the Agreement expires and notify NHS Digital in line with standard procedures. This 2014 version of the data set available has been redacted on Disclosure Control Procedure advice to minimise the likelihood of individuals being able to identify anyone taking part in the survey.

UKDS will transfer the pseudonymised APMS data to KCL. No other organisations will be involved in the flow of data.

KCL will store the data within an encrypted folder on a Microsoft OneDrive for Business account. For authorised users only, the data will be remotely accessed via secure, password protected, computers within the institutions at KCL. However, data will only be accessed through KCL computers within the Addiction Sciences Building of the Denmark Hill campus, and by individuals within KCL who are granted authorisation by KCL to access the data for the objectives described previously. All individuals requiring access to the data are substantive employees of KCL, or personnel (doctoral research student) working under the supervision of substantive employees of KCL.

The APMS 2014 dataset will be used by KCL to conduct research into patterns of domestic violence and to explore possible relationships between caregiver reports of domestic violence exposure and health morbidity, in order to address gaps within the literature identified in the previous section (Section 5a). The nationally representative data, yielded from the 2007 and 2014 surveys, is required in order to maximise the potential to offer informed conclusions.

Individual level APMS data will not be linked to any other datasets.

There will be no requirement nor attempt to re-identify individuals from the data.

Data will only be accessed by individuals within KCL who have authorisation to access the data for the purpose(s) described, all of whom are substantive employees of KCL.

All organisations party to this Agreement must comply with the Data Sharing Framework Contract requirements, including those regarding the use (and purposes of that use) by “Personnel” (as defined within the Data Sharing Framework Contract - i.e. employees, agents and contractors of the Data Recipient who may have access to that data).

The data will not be made available to any third parties other than those specified except in the form of aggregated outputs with small numbers suppressed in line with the HES Analysis Guide.

The data will not be used for any commercial purposes, it will not be provided in record-level form to any third party and will not be used for direct marketing.

A PhD thesis was due to be submitted in May 2022 to the relevant reviewing committee at KCL. containing a report of the key findings from study 1, which would have utilised APMS 2014 (and APMS 2007) data for analysis. However, The Covid-19 pandemic caused significant delays to the planned secondary analysis of the APMS 2014 data set. Imposed national lock-downs, and therefore institution and building closures, prevented the applicant from accessing the data set during these periods. Due to the encountered delays, the submission date for the PhD thesis is now intended to be late 2022. The target date for publication of the manuscript in a peer-reviewed journal has also been amended. This output is intended to be submitted by late 2022.

The level of data contained in these outputs will be aggregated, with small numbers suppressed in line with the HES Analysis Guide referred to within the NHS Digital guidance provided to applicants.

The overarching aim of the related PhD studies is to improve understanding of caregiver accounts of violence exposure and their implications for health and functioning, particularly for carers with severe mental health problems. The research outputs aim to extend what is currently known about risk factors associated with violence through exploration of carer-based risk factors and contextual factors which might perpetuate risk of violence in informal caregiving relationships.

The first step in the sequence of events necessary to achieve this project’s aims will be the dissemination of the outputs described in the previous section (Section 5c). The knowledge, obtained from study 1 will also, potentially, contribute to the development of a family-based psychological intervention for mental health carers affected by domestic violence (developed at a later stage of the PhD project). As such, this project will make a distinctive contribution to the broader literature, the evidence base and the development of a targeted intervention.

Expected benefits from the dissemination of study 1, specifically, centre around improving understanding in the following ways:

a) In cross-sectional and nationally representative samples, it will provide information on health-related outcomes in carers reporting violence exposure, those carers reporting no violence, and non-carer populations;

b) It will provide information about differences in outcomes relating to other life domains between these groups;

c) It will elucidate sub-groups of carers with a history of violence exposure who may, due to socio-demography, be particularly vulnerable to poorer health-related outcomes.

Additionally, as the findings obtained from the analyses of APMS data (study 1) will help to inform aspects of the later studies to be conducted as part of the wider research project, and thereby forming an integral part of this doctoral project, benefits are expected to be multifaceted. By adding to the evidence base, the doctoral project will seek to improve the practice of professionals working with informal carers affected by violence. Benefits are also expected to reach the scientific community, through an improved understanding of a complex phenomenon. Finally, benefits are expected to reach both carer and patient communities through peer reviewed journals, mental health blogs and academic and user led conferences.

Completion of this doctoral project is also in the public interest, given that approximately 6 million people in the UK provide informal care; a figure that is anticipated to reach 9 million by 2037. The widespread phenomena of informal caregiving and evidence suggesting that the prevalence of violence is approximately 50-60% in these relationships, necessitates research efforts to understand carers’ experiences of violence. An improved understanding is essential for the planning of effective future intervention and prevention strategies, aimed at minimising the risk of violence in informal caregiving relationships.

As the research project is currently in its infancy and data analysis is yet to be conducted, it is not possible at this stage to accurately quantify the expected benefits and magnitude. That said, it is anticipated that improving understanding of the multifaceted components of informal caregiver roles, which might include experiences of victimisation and violence would be an important benefit. The findings might help to identify potential areas of unmet clinical and social need in a vulnerable group and provide support for further research resources and support programmes. As the doctoral project progresses, the expected benefits, and anticipated magnitude of said benefits, will be formalised and updates will be shared with NHS Digital accordingly.

The significant delays to this project that have been encountered due to Covid-19 have, to date, precluded the expected benefits from being achieved. As it is anticipated that the expected benefits will be yielded following dissemination of the findings, no changes are being made to the expected benefits specified in the original application. However, as detailed in the updated ‘outputs’ section, the completion of analysis and therefore dissemination of findings has been significantly delayed. Therefore, the expected benefits will not be yielded until a later date. Updated target dates have been outlined in the updated ‘outputs’ section.