ENTWINE Survey on Family caregiving

Background, aims and title of the study

ENTWINE iCohort is an intensive longitudinal cohort study designed to collect data on the various determinants and outcomes of willingness and motivations to provide care in nine countries (Ireland, UK, Israel, Italy, Netherlands, Poland, Germany, Greece and Sweden).The study is addressing caregivers and people receiving care, as long as both are 18 years old or over. Within this ENTWINE-iCohort Study, five Early Stage Researchers will work together to attain shared and unique objectives focused around willingness and motivations to provide care. In brief these include the examination of: – prevalence and cultural differences in willingness and motivations to provide care, – personal and geographical barriers and facilitators of caregiving, – diversity in experiences of caregiver-care recipient dyads, – differences across countries of formal versus informal caregiving and personal preferences, – opportunities and challenges of household-based migrant care work to support informal caregiving

Recruitment process and what’s expected of participants

Participants access the survey online and are then presented with an information sheet and consent form for the study. We have two versions of the survey, one for care recipients and one for people in need of care. The study is made up of three main parts. The first is a baseline survey, which takes approximately 60 minutes to complete for the caregiver survey, or 40 minutes for care recipients. After the baseline, people are able to take part in 24 weekly assessments (around 10 minutes per week). We then have a slightly shorter follow up survey (6 months after the baseline)

Confidentiality

The study will require a personal contact email from each participant in order to facilitate follow-up invitations to be issued at 6 months following baseline  (iCohort Survey) and prompts to be sent for weekly diary completion (iCohort Diary Study). These personal contact details shall be stored securely and separately from the raw data collected and raw data shall not be identifiable/attributable to a named individual other than to the individual themselves and the study team.

Electronic data will be stored on university computers that have state of the art security and firewalls. Data will be stored on a shared drive only accessible by the researchers and will be password protected.

All data in this study are collected digitally. Most data are collected in Unipark (http://www.unipark.com/). Unipark is QuestBack’s academic program and provides the world’s leading online survey software to universities and institutes. The BSI-certified data center is subject to extremely high data protection and security requirements according to ISO 27001 on the basis of IT basic protection. Data in Unipark is only accessible by the members of the research team and consists of the e-mail address participants provide, their code and the data collected in the questionnaires.

Evidence of ethics approval from your university – confirmation your project has received clearance. We do not require your actual ethics application

Ethics clearance has been granted from the University of Bangor, NHS UK, University of Groningen, Bar Ilan University, Uppsala University, Università Cattolica del Sacro Cuore, the University of Oldenburg, and the University of Wroclaw.

Contact information for the researcher and supervisor

Please see the following link

https://www.entwine-icohort.eu/contacts/

Survey: https://bit.ly/2DYXtE6

Website: https://www.entwine-icohort.eu/