Needs and preferences of different groups of informal caregivers towards designing digital solutions

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 [e-mail]). 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. Development and Validation of Brief Measures of Positive and Negative Affect: The PANAS Scales. J Pers Soc Psychol 1988;54(6):1063–1070. PMID:3397865 4. Pavot W, Diener E, Colvin CR, Sandvik E. Further Validation of the Satisfaction With Life Scale; Evidence for the Cross-Method Convergence of Well-Being Measures. J Pers Assess 1991;57(1):149–161. PMID:1920028 5. Tarlow BJ, Wisniewski SR, Belle SH, Rubert M, Ory MG, Gallagher-Thompson D. Positive aspects of caregiving: Contributions of the REACH project to the development of new measures for Alzheimer’s caregiving. Res Aging 2004;26(4):429–453. [doi: 10.1177/0164027504264493] 6. Hendrick SS, Dicke A, Hendrick C. The relationship assessment scale. J Soc Pers Relat 1998;15(1):137–142. [doi: 10.1177/0265407598151009] 7. Berg CA, Schindler I, Maharajh S. Adolescents’ and Mothers’ Perceptions of the Cognitive and Relational Functions of Collaboration and Adjustment in Dealing With Type 1 Diabetes. J Fam Psychol 2008;22(6):865–874. 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]"本项目旨在探究照护至亲的青年照护者（young adult caregivers，简称YACs）与无照护责任的青年群体（non-YACs）在感知生活平衡与社会心理功能方面的差异。此外，本项目还旨在了解YACs对一款面向非正式照护者的支持工具的评价情况。该工具命名为「照护者平衡工具（Caregiver Balance）」（访问地址：https://balans.mantelzorg.nl），专为支持为姑息治疗阶段至亲提供照护的非正式照护者开发，且可经适配后满足YACs的需求。 本项目共收集了74名YACs与246名non-YACs的数据：两组均完成了问卷调研，且YACs额外参与了可用性测试。其中，问卷数据被用于对比18-25岁、在荷兰求学的YACs与non-YACs的感知生活平衡与心理功能（研究1）；此外，本研究还分析了YACs的照护积极维度与关系因素（尤其是关系质量与协作应对方式）之间的关联（研究2）；最后，本项目开展了可用性研究，通过访谈YACs以了解其对支持性网络解决方案的需求与偏好（研究3）。 <strong><em>表格：研究详情与关联文件</em></strong> <table> <thead> <tr><th>序号</th><th>研究名称</th><th>研究目标</th><th>研究类型</th><th>数据类型</th><th>关联文件</th></tr> </thead> <tbody> <tr><td>1</td><td>青年学生群体的感知生活平衡：照护者与非照护者的对比</td><td>对比18-25岁、在荷求学的青年照护者（YACs）与无照护责任青年群体的感知生活平衡与心理功能</td><td>调查研究</td><td>定量数据</td><td>ENTWINE_YACs_nonYACsSurvey_RawData、ENTWINE_PerceivedLifeBalanceSurvey_YACs_nonYACs_CleanedData、ENTWINE_PerceivedLifeBalanceSurvey_Syntax、ENTWINE_YACs_nonYACsSurvey_codebook</td></tr> <tr><td>2</td><td>青年照护者的照护积极维度与关系因素关联探究</td><td>分析18-25岁、在荷求学的青年照护者（YACs，特定非正式照护者群体）的照护积极维度与关系因素（尤其是关系质量与协作应对方式）之间的关联</td><td>调查研究</td><td>定量数据</td><td>ENTWINE_YACs_nonYACsSurvey_RawData、ENTWINE_PositiveAspectsCaregiving_Survey_YACs_cleanedData、ENTWINE_PositiveAspectsCaregiving_Survey_Syntax、ENTWINE_YACs_nonYACsSurvey_codebook</td></tr> <tr><td>3</td><td>青年照护者的支持需求、使用问题与网络工具偏好探究</td><td>（1）探究YACs在照护过程中面临的挑战与支持需求；（2）了解其对「MantelzorgBalans」工具内容的需求；（3）梳理其使用该工具时遇到的问题与工具适配偏好</td><td>可用性研究</td><td>定性与定量数据</td><td>ENTWINE_Needs_Web-basedTools_YACs_Interview_Usability_RawData、[待确定是否可共享]、ENTWINE_Needs_Web-basedTools_YACs_Questionnaires_RawData</td></tr> </tbody> </table> <strong>待上传文件说明</strong> <strong><em>研究1：青年学生群体的感知生活平衡：照护者与非照护者的对比</em></strong> ENTWINE_YACs_nonYACsSurvey_RawData：包含完整原始假名化问卷数据的SPSS文件。基于该原始数据生成了如下清洗后数据集：ENTWINE_PerceivedLifeBalanceSurvey_YACs_nonYACs_CleanedData。 ENTWINE_PerceivedLifeBalanceSurvey_YACs_nonYACs_CleanedData：包含如下元数据的清洗后SPSS数据集： <strong>研究人群：</strong>18-25岁、在荷兰求学的青年照护者与非照护者；<strong>参与者人数：</strong>总计320人（74名YACs与246名non-YACs）；<strong>测量时间节点：</strong>2020年12月至2022年3月；<strong>数据类型：</strong>定量数据；<strong>涵盖测量指标与研究主题：</strong>感知生活平衡（基于职业平衡问卷[1]）、职业倦怠（职业倦怠评估量表[2]）、积极与消极情感（积极消极情感量表[3]）、生活满意度（生活满意度量表[4]）；<strong>数据获取流程：</strong>通过Qualtrics平台开展线上问卷调研。SPSS语法文件ENTWINE_PerceivedLifeBalanceSurvey_Syntax用于清洗与分析ENTWINE_PerceivedLifeBalanceSurvey_YACs_nonYACs_CleanedData数据集。 ENTWINE_YACs_nonYACsSurvey_codebook：包含ENTWINE_PerceivedLifeBalanceSurvey_YACs_nonYACs_CleanedData数据集的变量名、变量标签、关联编码值与编码标签的编码手册。 <strong><em>研究2：青年照护者的照护积极维度与关系因素关联探究</em></strong> ENTWINE_YACs_nonYACsSurvey_RawData：包含完整原始问卷数据的SPSS文件。基于该原始数据生成了如下清洗后数据集：ENTWINE_PositiveAspectsCaregiving_Survey_YACs_cleanedData。 ENTWINE_PositiveAspectsCaregiving_Survey_YACs_cleanedData：包含如下元数据的清洗后SPSS数据集： <strong>研究人群：</strong>18-25岁、在荷兰求学的青年照护者（YACs）；<strong>参与者人数：</strong>74名YACs；<strong>测量时间节点：</strong>2020年12月至2022年3月；<strong>数据类型：</strong>定量数据；<strong>涵盖测量指标与研究主题：</strong>照护积极维度（照护积极维度量表[5]）、关系质量（关系评估量表[6]）、协作应对方式（协作感知问卷[7]）；<strong>数据获取流程：</strong>通过Qualtrics平台开展线上问卷调研。SPSS语法文件ENTWINE_PositiveAspectsCaregiving_Survey_Syntax用于清洗与分析ENTWINE_PositiveAspectsCaregiving_Survey_YACs_cleanedData数据集。 ENTWINE_YACs_nonYACsSurvey_codebook：包含ENTWINE_PositiveAspectsCaregiving_Survey_YACs_cleanedData数据集的变量名、变量标签、关联编码值与编码标签的编码手册。 <strong><em>研究3：青年照护者的支持需求、使用问题与网络工具偏好探究</em></strong> ENTWINE_Needs_Web-basedTools_YACs_Interview_Usability_RawData：包含13份访谈与可用性测试定性数据转录本的假名化Word文件，元数据如下：<strong>研究人群：</strong>18-25岁、在荷兰求学的青年照护者（YACs），总计13名参与者；<strong>测量时间节点：</strong>2021年10月至2022年2月；<strong>数据类型：</strong>定性与定量数据；<strong>涵盖测量指标与研究主题：</strong>照护挑战、支持需求与障碍、电子健康工具的可用性需求、偏好与使用问题；<strong>数据获取流程：</strong>线上访谈。 ENTWINE_Needs_Web-basedTools_YACs_Questionnaires_RawData：包含定量问卷原始数据的Excel表格，元数据如下：<strong>研究人群：</strong>18-25岁、在荷兰求学的青年照护者（YACs），总计13名参与者；<strong>测量时间节点：</strong>2021年10月至2022年2月；<strong>数据类型：</strong>定性与定量数据；<strong>涵盖测量指标与研究主题：</strong>用户体验（用户体验问卷[8]）、网络工具使用满意度（场景后问卷[9]）、电子健康工具的使用意愿与说服潜力（说服潜力问卷[10]）；<strong>数据获取流程：</strong>线上问卷调研。 <strong>数据收集详情</strong> 所有数据均在项目负责人的监督下，按照《通用数据保护条例》（General Data Protection Regulation，GDPR）与FAIR（可发现、可访问、可互操作、可复用）原则进行收集、处理与归档。本项目的主研究者与荷兰特温特大学健康心理学与电子健康领域的专家团队（指导教师）对研究的科学质量进行了审核。本项目在正式启动数据收集前已进行预试验与测试。针对问卷调研，研究者每周监控数据收集进度以确保流程顺畅。荷兰格罗宁根大学医学中心中央伦理审查委员会（Centrale Ethische Toetsingscommissie，CTc）批准了本研究（登记号：202000623）。参与者通过电子方式签署了知情同意书以参与本研究。 <strong>使用条款</strong> 有意向者可通过联系项目负责人（荷兰格罗宁根大学医学中心Mariët Hagedoorn教授，邮箱：[e-mail]）提交数据申请。申请数据时，有意向者需提供研究计划（包括研究问题、研究方法与分析计划）。项目负责人将对研究计划的质量与适配性进行审核，并告知申请人结果。同意数据复用的参与者的（伪）匿名数据可在本博士项目完成后的15年内申请获取。本博士项目完成且研究结果发表后，数据将以Excel或SPSS格式与变量编码手册一同提供。 <strong>参考文献</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. Development and Validation of Brief Measures of Positive and Negative Affect: The PANAS Scales. *J Pers Soc Psychol* 1988;54(6):1063–1070. PMID:3397865 4. Pavot W, Diener E, Colvin CR, Sandvik E. Further Validation of the Satisfaction With Life Scale; Evidence for the Cross-Method Convergence of Well-Being Measures. *J Pers Assess* 1991;57(1):149–161. PMID:1920028 5. Tarlow BJ, Wisniewski SR, Belle SH, Rubert M, Ory MG, Gallagher-Thompson D. Positive aspects of caregiving: Contributions of the REACH project to the development of new measures for Alzheimer’s caregiving. *Res Aging* 2004;26(4):429–453. [doi: 10.1177/0164027504264493] 6. Hendrick SS, Dicke A, Hendrick C. The relationship assessment scale. *J Soc Pers Relat* 1998;15(1):137–142. [doi: 10.1177/0265407598151009] 7. Berg CA, Schindler I, Maharajh S. Adolescents’ and Mothers’ Perceptions of the Cognitive and Relational Functions of Collaboration and Adjustment in Dealing With Type 1 Diabetes. *J Fam Psychol* 2008;22(6):865–874. 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]"