Demo

How can we best measure and record care-related quality of life for residents in care homes?

You are invited to take part in a consultation exercise as part of the DACHA study to decide how we should measure and collect information about care home residents’ quality of life.

Open until

25 July 2022 (Task 1)

About this project
Information for participants

Background

The DACHA study aims to develop a Minimum Data Set (MDS) for use in UK care homes.

An MDS is defined as a standardised account of the demographic, social, and health characteristics and needs of older people living in long-term care (care home) settings.

The study has an overarching aim of improving the lives of care home residents.

About this project

The health metrics of the Minimum Data Set reflect a broad consensus from practice and research on what is essential information to collect on residents. There is less clarity or agreement about how to define and measure quality of life for someone living in a care home often with dementia.

This DACHA led Thiscovery project aims to clarify how this can be done by seeking your views. Your participation will be invaluable towards shaping a prototype MDS and influencing future care home practice.

We want to hear from care home residents, family members, care home staff and managers, healthcare professionals, local authorities, and social care organisations

We are interested in the views of all people linked with care homes

Step by step

Register your Thiscovery account
It only takes a couple of minutes. You’ll need to verify your email address too
Give consent
Read the information for participants and agree to take part
Watch video & complete survey
After a short introductory video we will ask you to complete a survey

Information for participants

Key things to know

  • This project is part of the DACHA study, which aims to decide how we should measure and collect information about care home residents’ quality of life.
  • We are keen to gain insights from care home residents and staff members, senior operation and care home managers, old age specialists, relatives and families of care home residents, healthcare professionals, local authorities and social care organisations.
  • Taking part in this project involves registering on Thiscovery and completing a survey to express your views on five quality of life measures.
  • Participation in this project is entirely voluntary.
  • Your confidentiality will be maintained at all times. Nothing you say will be attributed to you (or your employer).
  • This webpage explains the project in more detail.

Ethics approval for this exercise has been granted by the Ethics Committee with Delegated Authority (ECDA) of the University of Hertfordshire, the sponsor of the DACHA study. The protocol number for ethics approval is HSK/SF/UH/05009.

University of Hertfordshire            NIHR

What is the purpose of this study?

The DACHA (Developing research resources And minimum data set for Care Homes’ Adoption and use) study has an overarching aim of improving the lives of care homes residents through the creation of a Minimum Data Set (MDS) for care homes.

An MDS is defined as: a standardised account of the demographic, social, and health characteristics and needs of older people living in long-term care (care home) settings. Data will be accessed through administrative sources where possible (including NHS Digital, local authority records, and software providers hosting ‘e-records’ in care homes).

One area where there is currently an information gap is how to capture resident care-related quality of life. We are undertaking this consultation exercise with all care home stakeholders, to better understand how to measure residents’ quality of life, and the feasibility of integrating validated questionnaires into the prototype Minimum Data Set, which will be piloted in care homes later this year.

What will happen and how will you be involved?

If you decide to take part in this project, you will be involved in it from when you register until the end of the survey, which will last up to 25 minutes.

Personal data used to register for Thiscovery with your name and email address will remain in the Thiscovery personal data stores according to its Privacy Policy. You can de-register and withdraw your data from Thiscovery at any point by emailing enquiries@thisinstitute.cam.ac.uk.

The first thing you will be asked to do is provide some basic information about yourself and your relationship with care homes. Then you will see questions specific to quality of life. Before each question you will see an explanation describing what to do in that exercise.

Are there any risks?

We do not expect there to be any risks or disadvantages of taking part. The burden will be the time taken to participate in the rating exercise.

Do I have to take part?

It is completely up to you whether you decide to take part in this project. If you do decide to take part, you will need to give consent at the beginning of the survey using the Thiscovery platform. Agreeing to join the project does not mean that you must complete it. You are free to withdraw at any stage without giving a reason. A decision to withdraw at any time, or a decision not to take part at all, will not affect your relationship with your employer.

How will my information be kept confidential?

Personal information (such as, names and contact details) will be collected and stored securely at all times and only available to those who need access to it. The terms and conditions relating to the use and storage of data by the Thiscovery platform are available online at https://www.thiscovery.org . Your details will be used to contact you to arrange the participation in the project and inform you about the findings (if you agree). Your personal information will be destroyed after the end of the project.  Users can de-register and withdraw their data from Thiscovery at any point by emailing enquiries@thisinstitute.cam.ac.uk.

What will happen to the results of the project?

We will need to use information from you to conduct the project. People who do not need to know who you are will not be able to see your name or contact details. Your data will have a code number instead and be analysed by the research team.

We will keep all information about you safe and secure. Once we have finished the project, we will keep some of the data so we can check the results. We need to manage your records in specific ways for the research to be reliable. This means that we will not be able to let you see or change the data we hold about you. We will write our reports in a way that no one can work out that you took part in the project. If you want, we can send you a brief summary of the project findings.

After the project has ended, the data will be stored electronically, in a password-protected environment, for 10 years, after which time it will be destroyed under secure conditions. Personal information (such as anything that could identify you) will be removed, before storage.

University of Hertfordshire is fully compliant with General Data Protection Regulation (GDPR) requirements for transparent, fair and legal data protection. The research team will adhere to these obligations. For more details see here: https://www.herts.ac.uk/about-us/legal/freedom-of-information-data-protection/data-protection

Who is organising and funding the project?

This exercise is part of the DACHA study, funded by National Institute of Health and Care Research (NIHR), through the Health and Social Care Delivery Research (HSDR) Programme award.

The study is being supported by THIS Institute (based at University of Cambridge) who has provided access and support to the Thiscovery online platform, where the survey will take place.

Who has reviewed the project?

The sponsor for this study is the University of Hertfordshire. This study has been reviewed by the University of Hertfordshire Health, Science, Engineering and Technology Ethics Committee with Delegated Authority.

The UH protocol number is HSK/SF/UH/05009.

Get in touch

For questions or concerns about anything to do with the project, please email the project team at dacha@herts.ac.uk.

If you have any technical issues then please contact help@thiscovery.org or send a message via the Thiscovery live chat function.

For any complaints or concerns

You can contact the principal investigator of the study (Claire Goodman c.goodman@herts.ac.uk)

If you wish to raise a complaint on how we have handled your information, you can contact the Data Protection Officer at dpo@admin@cam.ac.uk 

If you are not satisfied with their response of believe your data us being processed in a way that is not lawful, you can complain to the Information Commissioners Office (ICO) at www.ico.org.uk

HSK/SF/UH/05009