Understanding the unpaid carers of people using social care services in England

Background and Rationale

The objective for the University of Kent to process the requested data is to help put the findings of the ‘Diverse Experiences of Unpaid Carers Across the Caring Trajectory’ (DECAT) project, into a wider context. The ethics approval and protocol supplied to NHS Digital relate to the DECAT project and are therefore not specific to this data request.

The DECAT project (https://www.pssru.ac.uk/decat/homepage/) aims to understand how carers’ satisfaction with services and quality of life change over time, and why. Different patterns and trajectories of caring are likely to influence the way individuals perceive their caring role. Previous research on this topic focused on working age carers of older people, but the way they experience caring may differ compared to retired carers or working age carers of working age individuals. Furthermore, the experiences of carers within these broad groups are likely to vary. For example, intermittent caring associated with a relapsing and recovering relative with a mental health problem has different challenges to the long-term commitment of caring for someone with a severe learning disability. The Equality Act 2014 states that social care organisations should make provision to include carers who may have different values and cultural norms about family care , face particular barriers in accessing services or have particular needs. Ensuring support is accessible, timely, and appropriate for all carers, including those with specific needs is key to enabling the wellbeing of the carers and the service users they support. A recent National Institute for Health and Care Research-School for Social Care Research funded review (see here - http://oro.open.ac.uk/52784/) identified that most research studies do not follow-up the same carers across time, meaning the temporal dimension is rarely captured. The study aims to address these evidence gaps by following up a sample of carers who agreed to be contacted for future research.

The University of Kent Research Ethics Commitee have confirmed that ethics approval does not need to be sought in respect of this study.

Objectives

1. To identify the factors that contribute to changes in carer quality of life and satisfaction with services over time.

2. To explore the extent of differences in quality of life and satisfaction between carers of people with mental health problems (MH), learning disabilities, autism, dementia or other needs.

3. To identify the support, services or other factors that enable carers to optimise their quality of life.

4. To identify the specific barriers in accessing services faced by carers from ‘minority’ and ‘seldom' heard groups and ways to overcome them.

Data Request

To put the findings of the DECAT project into context, the University of Kent will utilise the Personal Social Services Survey of Adult Carers in England (PSS SACE). The level of data required is record-level, pseudonymised data. The PSS SACE collects national information about unpaid carers (family, friends or neighbours aged 18 and over) of people (aged 18 and over) using social care services. The PSS SACE is a biennial cross-sectional survey collected since 2009, although it was last conducted in 2021/22 (intended to be 2020/21 but delayed for 1 year due to the COVID-19 pandemic). It is conducted by local authorities with Adult Social Care responsibilities, and covers carers aged 18 or over, caring for a person aged 18 or over, who have been assessed or reviewed by social services (or where the cared-for person has received respite or another form of carer support) during the last 12 months. The PSS SACE seeks carers’ opinions on a number of topics that are considered to be indicative of a balanced life alongside their caring role, including:

1. Characteristics of the carer

2. Nature and impact of the caring role

3. Quality of support services and information received

4. Quality of life

5. Characteristics of the person receiving care

Justification for Data Requested

In order to be able to make claims about the generalisability of the DECAT project’s findings, the research team needs to understand the demographic characteristics of the PSS SACE’s eligible population and samples over time. In particular, the degree to which the sample the DECAT study covers is similar in demographic structure, and which groups of carers are under-represented. Without data to allow the findings to be interpreted within a national context, the results would likely be criticised by journal editors for a lack of rigour, jeopardising the publication of the research findings. Data from the years 2018/19 and 2021/22 will be used by University of Kent in order to provide a national data context to interpret the data collected for the DECAT study. This would enable researchers to compare the DECAT findings to trends amongst carers across England in a pre-COVID-19 pandemic era (2018/2019) and as the nation started to return to a semblance of normality (2021/22). This could lead to crucial improvements to the support services available for carers, which is key to creating a sustainable social care system for the future.

University of Kent request access to the data for 3 years in order to ensure enough time for the completion of the DECAT project data collection and analysis, prior to comparison to the requested datasets. In addition, University of Kent have built-in adequate time for the journal publication process, which may include checking analysis.

Legal Basis for Processing

The legal bases, under the General Data Protection Regulation (GDPR), for the University of Kent to process personal data are:

- Article 6 (1) (e) - ‘processing is necessary for the performance of a task in the public interest or in the exercise of official authority vested in the controller’ ;

- Article 9 (2) (j) ‘processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes’.

The University of Kent can rely upon these legal bases as they are considered to be a ‘public authority’ under Schedule 1 of the Freedom of Information Act 2000. The University of Kent has a Royal Charter which sets out that ‘the objects of the University are to advance education and disseminate knowledge by teaching, scholarship and research for the public benefit’. The dissemination of PSS SACE data would maximise the value of publicly-funded research by showing whether findings are consistent nationwide. If findings are consistent nationally, the results could contribute to better tailored and targeted support services for carers.

Controllership and Funding

The University of Kent are the sole organisation that will determine the means and purposes of the processing of personal data and therefore are deemed the sole Data Controller. A staff member from the London School of Hygiene and Tropical Medicine has a role in this project to advise the Principal Investigator from on the application of statistical techniques. However, the means and purposes of the processing of NHS Digital data will be driven by the University of Kent-based Principal Investigator, meaning the London School of Hygiene and Tropical Medicine are a Data Processor only for the purposes of this Data Sharing Agreement. In addition, the staff member from the London School of Hygiene and Tropical Medicine will access the data on site at University of Kent only.

The National Institute for Health and Care Research’s School for Social Care Research (based at the London School of Economics & Political Science but comprising seven universities) is funding the study, but they have had no role in the design of the study and will not be processing NHS Digital data – they are therefore not considered, nor are any of the universities comprising the entity, a Data Controller or Data Processor. In addition, the funding contract explicitly states that the information generated remains the intellectual property of the researchers.

The PSS SACE is funded by the Department of Health and Social Care (DHSC), whilst the data is collected (since 2009-10) by NHS Digital (or its predecessors). NHS Digital prepare all the necessary survey materials which are then made available to all Local authorities (LAs) with Adult Social Services Responsibilities (CASSRs). LAs with CASSRs then print and post the questionnaire to those who have been identified in an appropriate sample of their eligible population. The responses are collated locally and submitted to NHS Digital for consolidation, validation, analysis and publication.

The University of Kent are requesting access to record-level, pseudonymised PSS SACE data. Data will be supplied to the University of Kent by the Social Care Statistics Team at NHS Digital. The data requested from NHS Digital will not be linked to any other research data held at the University of Kent and there will be no attempt to re-identify individuals from NHS Digital data. All outputs will be aggregated data with small numbers suppressed to avoid re-identification of individuals.

Data will be stored on a secure data server (Personal Social Services Research Unit Health Data Farm - PHEDAF) which is stored in a locked room. Only staff who have been granted permission from the Director of Personal Social Services Research Unit, who are substantive employees of the University of Kent or the London School of Hygiene and Tropical Medicine and who have passed the UK Data Service Secure Lab training will have access to the PHEDAF from their desktop computers at the University of Kent campus. There will be no off-site access to the secure data environment. An encrypted, backup server is located in a different building on the University of Kent campus. Access to the backup data centre is controlled by combined card access and personal identification number (PIN). No data will be processed on the backup server, only stored. Full details of the security arrangements can be found in University of Kent’s system-level security policy which has been supplied to NHS Digital.

PSS SACE Disclosure Control Policy

‘In order to protect individuals from the risk of re-identification, the following restrictions must be applied when publishing outcomes of analyses based on SACE data:

· age group and ethnicity are to be grouped into broad categories

o age: 18-64 and 65+plus

o ethnicity: white, non-white and refused/not stated

· the number of children will be recoded into five categories,

o 0

o 1

o 2

o 3

o 4+

· sensitive data items available (sexual identity, religion, reported health conditions, and primary support reason) are only to be published in an aggregate form;

· in instances where less than three service users, within a council, have unique combinations of the most identifiable variables – age group, gender, ethnicity group and number of children – a suppression to value ‘99’ of these four variables will be required (for publications of record-level data analyses).

Carers may be able to identify themselves using the responses they made but it is not thought self-identification would cause harm or distress.’

The University of Kent hope to produce the following outputs:

• Presentations to Carers Leads network – Autumn 2022.

• Presentations to regional Association of Adult Directors of Social Services (ADASS) policy network - Autumn 2022 onwards.

• Peer-reviewed research article in the International Journal of Care and Caring – Winter 2022.

• Report to funder (The National Institute for Health and Care Research’s School for Social Care Research) - Spring 2023.

• Academic presentation at the NIHR School for Social Care Conference and the Social Policy Association conference - Spring/Summer 2023

National government (1-2 years)

The Department of Health & Social Care has expressed a wish to include the project findings as evidence in a future Carers Strategy refresh, which could eventually benefit 6 million carers nationwide. Measured by citation of research report or article.

Academic community (1-2 years)

Articles reporting the findings of this research may offer new insights around future research avenues for other academic and practitioner researchers. Measured by citation of research article and/or conference proceedings.

For the wider social care and health community (1-5 years)

Dissemination of the national-level analysis (enabled by the dissemination of the requested data) via the ADASS Policy Network and the Carers Leads Network could inform local authorities across England regarding what carers require to maintain their quality of life. Local authorities could build these into their future service-level agreements in the next 3-5 years. Local authority commissioners my use the findings to more appropriately tailor and target their service planning and commissioning decisions. Measured by whether insights from findings are incorporated into new carer service provider contracts. Well-tailored and better targeted service commissioning would enhance the provision of social care and have beneficial indirect effects on the health system (e.g. fewer hospital admissions arising from carer breakdown), however future research would be needed to measure this outcome.

For the general public (in 4-6 years)

The dissemination of the requested data is in the public interest because it hopes to confirm or disconfirm the project’s findings about the support carers require, in order to continue to care for their loved ones whilst maintaining a reasonable quality of life for themselves. Given the number of unpaid carers is set to increase over the coming decades, this research may offer important information in planning a sustainable health and care system. Improvements in commissioning services could lead to higher satisfaction with services, improved quality of life for carers and services users (trends could be measured by looking at data from future collections of PSS SACE and ‘Understanding Society’ survey) in addition to ensuring public money is well-directed.

Yielded Benefits is not a requirement for new applications.