DOI: 10.5281/zenodo.7868196
title: Needs and preferences of different groups of informal caregivers towards designing digital solutions

description: The project aimed to understand whether young adults who take care of a loved-one (young adult caregivers; YACs) differ in their perceived life balance and psychosocial functioning as compared to young adults without care responsibilities (non-YACs). In addition, this project aimed to understand how YACs evaluated a tool to support informal careg ivers. This tool (“Caregiver Balance”; https://balans.mantelzorg.nl) is specifically designed to support informal caregivers taking care of a loved-one in the palliative phase and could potentially be adapted to meet the needs of YACs. In this project, we collected data of 74 YACs and 246 non-YACs. Both groups completed questionnaires, and the YACs engaged in a usability test. The questionnaire data was used to compare the perceived life balance and psychological functioning between YACs and non-YACs, aged 18-25 years, and studying in the Netherlands (study 1). Furthermore, we examined the relationship between positive aspects of caregiving and relational factors, in particular, relationship quality and collaborative coping among YACs (study 2). Finally, we conducted a usability study where we interviewed YACs to understand the needs and preferences towards a supportive web-based solution (study 3). <strong><em>Table: Study details and associated files</em></strong> Number Study Name Study Aim Study Type Type of data Associated Files 1 Perceived life balance among young adult students: a comparison between caregivers and non-caregivers Compare the perceived life balance and psychological functions among student young adult caregivers aged 18-25 years (YACs) with young adult without care responsibilities Survey study Quantitative ENTWINE_YACs_nonYACsSurvey_RawData ENTWINE_PerceivedLifeBalanceSurvey_YACs_nonYACs_CleanedData ENTWINE_ PerceivedLifeBalanceSurvey _Syntax ENTWINE_YACs_nonYACsSurvey_codebook 2 Examining the relationship of positive aspects of caregiving with relational factors among young adult caregivers Examine the relationship of positive aspects of caregiving with relational factors, in particular, relationship quality and collaborative coping among a particular group of ICGs, young adult caregivers (YACs), aged 18-25 years. Survey study Quantitative ENTWINE_YACs_nonYACsSurvey_RawData ENTWINE_PositiveAspectsCaregiving_Survey_YACs_cleanedData ENTWINE_PositiveAspectsCaregiving_Survey_Syntax ENTWINE_YACs_nonYACsSurvey_codebook 3 Exploring the support needs of young adult caregivers, their issues, and preferences towards a web-based tool Explore (i) challenges and support needs of YACs in caregiving, (ii) their needs towards the content of the ‘MantelzorgBalans’ tool, and (iii) issues they encountered in using the tool and their preferences for adaptation of the tool. Usability study Qualitative and Quantitative ENTWINE_Needs_Web-basedTools_YACs_Interview_Usability_RawData [to be determined whether data can be shared] ENTWINE_Needs_Web-basedTools_YACs_Questionnaires_RawData <strong>Description of the files to be uploaded</strong> <strong><em>Study 1: Perceived life balance among young adult students: a comparison between caregivers and non-caregivers</em></strong> ENTWINE_YACs_nonYACsSurvey_RawData: SPSS file with the complete, raw, pseudonomyzed survey data. The following cleaned dataset ‘ENTWINE_PerceivedLifeBalanceSurvey_YACs_nonYACs_CleanedData’ was generated from this raw data. ENTWINE_PerceivedLifeBalanceSurvey_YACs_nonYACs_CleanedData: SPSS file with the cleaned dataset having the following metadata - <strong>Population:</strong> young adult caregivers and young adult non-caregivers aged 18-25 years studying in the Netherlands; <strong>Number of participants:</strong> 320 participants in total (74 young adult caregivers and 246 young adult non-caregivers) <strong>Time point of measurement:</strong> Data was collected from December 2020 till March 2022 <strong>Type of data:</strong> quantitative <strong>Measurements included, topics covered:</strong> perceived life balance (based on the Occupational balance questionnaire [1]), burnout (Burnout Assessment Tool [2]), negative and positive affect (Positive and Negative Affect Schedule [3]), and life satisfaction (Satisfaction with Life Scale [4]) <strong>Short procedure conducted to receive data:</strong> online survey on Qualtrics platform SPSS syntax file ‘ENTWINE_ PerceivedLifeBalanceSurvey _Syntax’ was used to clean and analyse ENTWINE_PerceivedLifeBalanceSurvey_YACs_nonYACs_CleanedData dataset ENTWINE_YACs_nonYACsSurvey_codebook: Codebook having the variable names, variable labels, and the associated code values and code labels for ENTWINE_PerceivedLifeBalanceSurvey_YACs_nonYACs_CleanedData dataset <strong><em>Study 2: Examining the relationship of positive aspects of caregiving with relational factors among young adult caregivers</em></strong> ENTWINE_YACs_nonYACsSurvey_RawData: SPSS file with the complete, raw survey data. The following cleaned dataset ‘ENTWINE_PositiveAspectsCaregiving_Survey_YACs_cleanedData’ was generated from this raw data. ENTWINE_PositiveAspectsCaregiving_Survey_YACs_cleanedData: SPSS file with the cleaned dataset having the following metadata - <strong>Population:</strong> young adult caregivers aged 18-25 years studying in the Netherlands; <strong>Number of participants:</strong> 74 young adult caregivers <strong>Time point of measurement:</strong> Data was collected from December 2020 till March 2022 <strong>Type of data:</strong> quantitative <strong>Measurements included, topics covered:</strong> positive aspects of caregiving (positive aspects of caregiving scale [5]), relationship quality (Relationship Assessment Scale [6]), collaborative coping (Perception of Collaboration Questionnaire [7] ) <strong>Short procedure conducted to receive data:</strong> online survey on Qualtrics platform. SPSS syntax file ‘ENTWINE_PositiveAspectsCaregiving_Survey_Syntax’ was used to clean and analyse ‘ENTWINE_PositiveAspectsCaregiving_Survey_YACs_cleanedData’ dataset. ENTWINE_YACs_nonYACsSurvey_codebook: Codebook having the variable names, variable labels, and the associated code values and code labels for ENTWINE_PositiveAspectsCaregiving_Survey_YACs_cleanedData dataset. <strong><em>Study 3: Exploring the support needs of young adult caregivers, their issues, and preferences towards a web-based tool </em></strong> ENTWINE_Needs_Web-basedTools_YACs_Interview_Usability_RawData: Pseudonymized word file including 13 transcripts having the qualitative data from interview and usability testing with the following metadata – <strong>Population:</strong> young adult caregivers aged 18-25 years studying in the Netherlands; 13 participants in total <strong>Time point of measurement:</strong> data was collected from October 2021 till February 2022 <strong>Type of data:</strong> qualitative and quantitative <strong>Measurements included, topics covered: </strong>Caregiving challenges, support needs and barriers, usability needs, preferences and issues towards eHealth tool <strong>Short procedure conducted to receive data</strong>: Online interviews ENTWINE_Needs_Web-basedTools_YACs_Questionnaires_RawData: Excel sheet having the quantitative questionnaire raw data with the following metadata <strong>Population:</strong> young adult caregivers aged 18-25 years studying in the Netherlands; 13 participants in total <strong>Time point of measurement:</strong> data was collected from October 2021 till February 2022 <strong>Type of data:</strong> qualitative and quantitative <strong>Measurements included, topics covered: </strong>User experience (user experience questionnaire [8]), satisfaction of using the web-based tool (After scenario questionnaire [9]), Intention of use and persuasive potential of the eHealth tool (persuasive potential questionnaire [10]) <strong>Short procedure conducted to receive data</strong>: Online questionnaire <strong>Data collection details</strong> All data was collected, processed, and archived in accordance with the General Data Protection Regulation (GDPR) and the FAIR (Findable, Accessible, Interoperable, Reusable) principles under the supervision of the Principal Investigator. The principal researcher and a team of experts (supervisors) in the field of health psychology and eHealth (University of Twente, The Netherlands) reviewed the scientific quality of the research. The studies were piloted and tested before starting the collection of the data. For the survey study, the researchers monitored the data collection weekly to ensure it was running smoothly. The ethical review board, Centrale Ethische Toetsingscommissie of the University Medical Center Groningen, The Netherlands (CTc), granted approval for this research (Registration number: 202000623). Participants digitally signed informed consent for participating in the study. <strong>Terms of use</strong> Interested persons can send a data request by contacting the principal investigator (Prof. dr. Mariët Hagedoorn, University Medical Center Groningen, the Netherlands mariet.hageboorn@umcg.nl). Interested persons must provide the research plan (including the research question, methodology, and analysis plan) when requesting for the data. The principal investigator reviews the research plan on its quality and fit with the data and informs the interested person(s). (Pseudo)anonymous data of those participants who agreed on the reuse of their data is available on request for 15 years from the time of completion of the PhD project. Data will be available in Excel or SPSS format alongside the variable codebook after the completion of this PhD project and publication of the study results. <strong>References</strong> 1. Wagman P, Håkansson C. Introducing the Occupational Balance Questionnaire (OBQ). Scand J Occup Ther 2014;21(3):227–231. PMID:24649971 2. Schaufeli WB, Desart S, De Witte H. Burnout assessment tool (Bat)—development, validity, and reliability. Int J Environ Res Public Health 2020;17(24):1–21. PMID:33352940 3. Watson D, Clark LA, Tellegen A. 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PMID:19102607 8. Laugwitz B, Held T, Schrepp M. Construction and evaluation of a user experience questionnaire. Lect Notes Comput Sci (including Subser Lect Notes Artif Intell Lect Notes Bioinformatics) 2008;5298 LNCS:63–76. [doi: 10.1007/978-3-540-89350-9_6] 9. Lewis JR. Psychometric evaluation of an after-scenario questionnaire for computer usability studies. ACM SIGCHI Bull 1991;23(1):78–81. [doi: 10.1145/122672.122692] 10. Meschtscherjakov A, Gärtner M, Mirnig A, Rödel C, Tscheligi M. The Persuasive Potential Questionnaire (PPQ): Challenges, drawbacks, and lessons learned. Lect Notes Comput Sci (including Subser Lect Notes Artif Intell Lect Notes Bioinformatics) 2016;9638:162–175. [doi: 10.1007/978-3-319-31510-2_14]