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76 results for “Informal caregiver”
Dataset for "Cognitive behavioural therapy self-help intervention preferences among informal caregivers of adults with chronic kidney disease: an online cross-sectional survey"
<p>Data and R code used for the analysis of data for the publication: Coumoundouros et al., Cognitive behavioural therapy self-help intervention preferences among informal caregivers of adults with chronic kidney disease: an online cross-sectional survey. BMC Nephrology</p> <p><strong>Summary of study</strong></p> <p>An online cross-sectional survey for informal caregivers (e.g. family and friends) of people living with chronic kidney disease in the United Kingdom. Study aimed to examine informal caregivers' cognitive behavioural therapy self-help intervention preferences, and describe the caregiving situation (e.g. types of care activities) and informal caregiver's mental health (depression, anxiety and stress symptoms).</p> <p>Participants were eligible to participate if they were at least 18 years old, lived in the United Kingdom, and provided unpaid care to someone living with chronic kidney disease who was at least 18 years old.</p> <p>The online survey included questions regarding (1) informal caregiver's characteristics; (2) care recipient's characteristics; (3) intervention preferences (e.g. content, delivery format); and (4) informal caregiver's mental health. Informal caregiver's mental health was assessed using the 21 item Depression, Anxiety, and Stress Scale (DASS-21), which is composed of three subscales measuring depression, anxiety, and stress, respectively.</p> <p>Sixty-five individuals participated in the survey.</p> <p>See the published article for full study details.</p> <p><strong>Description of uploaded files</strong></p> <p>1. ENTWINE_ESR14_Kidney Carer Survey Data_FULL_2022-08-30: Excel file with the complete, raw survey data. Note: the first half of participant's postal codes was collected, however this data was removed from the uploaded dataset to ensure participant anonymity.</p> <p>2. ENTWINE_ESR14_Kidney Carer Survey Data_Clean DASS-21 Data_2022-08-30: Excel file with cleaned data for the DASS-21 scale. Data cleaning involved imputation of missing data if participants were missing data for one item within a subscale of the DASS-21. Missing values were imputed by finding the mean of all other items within the relevant subscale. </p> <p>3. ENTWINE_ESR14_Kidney Carer Survey_KEY_2022-08-30: Excel file with key linking item labels in uploaded datasets with the corresponding survey question.</p> <p>4. R Code for Kidney Carer Survey_2022-08-30: R file of R code used to analyse survey data.</p> <p>5. R code for Kidney Carer Survey_PDF_2022-08-30: PDF file of R code used to analyse survey data.</p>
Needs and preferences of different groups of informal caregivers towards designing digital solutions
<p>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</p> <p>ivers. This tool (“Caregiver Balance”; <a href="https://balans.mantelzorg.nl">https://balans.mantelzorg.nl</a>) 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. </p> <p>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).</p> <p><strong><em>Table: Study details and associated files</em></strong></p> <table> <tbody> <tr> <td>Number</td> <td>Study Name</td> <td>Study Aim</td> <td>Study Type</td> <td>Type of data</td> <td>Associated Files</td> </tr> <tr> <td>1</td> <td>Perceived life balance among young adult students: a comparison between caregivers and non-caregivers</td> <td>Compare the perceived life balance and psychological functions among student young adult caregivers aged 18-25 years (YACs) with young adult without care responsibilities</td> <td>Survey study</td> <td>Quantitative</td> <td> <ol> <li>ENTWINE_YACs_nonYACsSurvey_RawData</li> <li>ENTWINE_PerceivedLifeBalanceSurvey_YACs_nonYACs_CleanedData</li> <li>ENTWINE_ PerceivedLifeBalanceSurvey _Syntax</li> <li>ENTWINE_YACs_nonYACsSurvey_codebook</li> </ol> </td> </tr> <tr> <td>2</td> <td>Examining the relationship of positive aspects of caregiving with relational factors among young adult caregivers</td> <td>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.</td> <td>Survey study</td> <td>Quantitative</td> <td> <ol> <li>ENTWINE_YACs_nonYACsSurvey_RawData</li> <li>ENTWINE_PositiveAspectsCaregiving_Survey_YACs_cleanedData</li> <li>ENTWINE_PositiveAspectsCaregiving_Survey_Syntax</li> <li>ENTWINE_YACs_nonYACsSurvey_codebook</li> </ol> </td> </tr> <tr> <td>3</td> <td>Exploring the support needs of young adult caregivers, their issues, and preferences towards a web-based tool</td> <td>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.</td> <td>Usability study</td> <td> <p>Qualitative and Quantitative</p> </td> <td> <ol> <li>ENTWINE_Needs_Web-basedTools_YACs_Interview_Usability_RawData [to be determined whether data can be shared]</li> <li>ENTWINE_Needs_Web-basedTools_YACs_Questionnaires_RawData</li> </ol> </td> </tr> </tbody> </table> <p><strong>Description of the files to be uploaded</strong></p> <p><strong><em>Study 1: Perceived life balance among young adult students: a comparison between caregivers and non-caregivers</em></strong></p> <ol> <li>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.</li> <li>ENTWINE_PerceivedLifeBalanceSurvey_YACs_nonYACs_CleanedData: SPSS file with the cleaned dataset having the following metadata - <ol> <li><strong>Population:</strong> young adult caregivers and young adult non-caregivers aged 18-25 years studying in the Netherlands;</li> <li><strong>Number of participants:</strong> 320 participants in total (74 young adult caregivers and 246 young adult non-caregivers)</li> <li><strong>Time point of measurement:</strong> Data was collected from December 2020 till March 2022</li> <li><strong>Type of data:</strong> quantitative</li> <li><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])</li> <li><strong>Short procedure conducted to receive data:</strong> online survey on Qualtrics platform</li> </ol> </li> <li>SPSS syntax file ‘ENTWINE_ PerceivedLifeBalanceSurvey _Syntax’ was used to clean and analyse ENTWINE_PerceivedLifeBalanceSurvey_YACs_nonYACs_CleanedData dataset</li> <li>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</li> </ol> <p><strong><em>Study 2: Examining the relationship of positive aspects of caregiving with relational factors among young adult caregivers</em></strong></p> <ol> <li>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.</li> <li>ENTWINE_PositiveAspectsCaregiving_Survey_YACs_cleanedData: SPSS file with the cleaned dataset having the following metadata - <ol> <li><strong>Population:</strong> young adult caregivers aged 18-25 years studying in the Netherlands;</li> <li><strong>Number of participants:</strong> 74 young adult caregivers</li> <li><strong>Time point of measurement:</strong> Data was collected from December 2020 till March 2022</li> <li><strong>Type of data:</strong> quantitative</li> <li><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] )</li> <li><strong>Short procedure conducted to receive data:</strong> online survey on Qualtrics platform.</li> </ol> </li> </ol> <ol> <li>SPSS syntax file ‘ENTWINE_PositiveAspectsCaregiving_Survey_Syntax’ was used to clean and analyse ‘ENTWINE_PositiveAspectsCaregiving_Survey_YACs_cleanedData’ dataset.</li> <li>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.</li> </ol> <p><strong><em>Study 3: Exploring the support needs of young adult caregivers, their issues, and preferences towards a web-based tool </em></strong></p> <ol> <li>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 – <ol> <li><strong>Population:</strong> young adult caregivers aged 18-25 years studying in the Netherlands; 13 participants in total</li> <li><strong>Time point of measurement:</strong> data was collected from October 2021 till February 2022</li> <li><strong>Type of data:</strong> qualitative and quantitative</li> <li><strong>Measurements included, topics covered: </strong>Caregiving challenges, support needs and barriers, usability needs, preferences and issues towards eHealth tool</li> <li><strong>Short procedure conducted to receive data</strong>: Online interviews</li> </ol> </li> <li>ENTWINE_Needs_Web-basedTools_YACs_Questionnaires_RawData: Excel sheet having the quantitative questionnaire raw data with the following metadata <ol> <li><strong>Population:</strong> young adult caregivers aged 18-25 years studying in the Netherlands; 13 participants in total</li> <li><strong>Time point of measurement:</strong> data was collected from October 2021 till February 2022</li> <li><strong>Type of data:</strong> qualitative and quantitative</li> <li><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])</li> <li><strong>Short procedure conducted to receive data</strong>: Online questionnaire</li> </ol> </li> </ol> <p><strong>Data collection details</strong></p> <ol> <li>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.</li> <li>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.</li> <li>The ethical review board, Centrale Ethische Toetsingscommissie of the University Medical Center Groningen, The Netherlands (CTc), granted approval for this research (Registration number: 202000623).</li> <li>Participants digitally signed informed consent for participating in the study.</li> </ol> <p><strong>Terms of use</strong></p> <ol> <li>Interested persons can send a data request by contacting the principal investigator (Prof. dr. Mariët Hagedoorn, University Medical Center Groningen, the Netherlands <a href="mailto:mariet.hageboorn@umcg.nl">mariet.hageboorn@umcg.nl</a>).</li> <li>Interested persons must provide the research plan (including the research question, methodology, and analysis plan) when requesting for the data.</li> <li>The principal investigator reviews the research plan on its quality and fit with the data and informs the interested person(s).</li> <li>(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.</li> <li>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.</li> </ol> <p><strong>References</strong></p> <p>1. Wagman P, Håkansson C. Introducing the Occupational Balance Questionnaire (OBQ). Scand J Occup Ther 2014;21(3):227–231. PMID:24649971</p> <p>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</p> <p>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</p> <p>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</p> <p>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]</p> <p>6. Hendrick SS, Dicke A, Hendrick C. The relationship assessment scale. J Soc Pers Relat 1998;15(1):137–142. [doi: 10.1177/0265407598151009]</p> <p>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</p> <p>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]</p> <p>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]</p> <p>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]</p> <p> </p>
Mobile App Intervention for Informal Dementia Caregivers
ClinicalTrials.gov study NCT05551533. IPD Sharing: NO. Countries: 1. Publications: 12.
Informal Caregivers ANSWERS-VA
ClinicalTrials.gov study NCT02398409. IPD Sharing: NO. Countries: 1. Publications: 1.
Online Information and Support for Distance Caregivers
ClinicalTrials.gov study NCT02666183. IPD Sharing: Not stated. Countries: 1. Publications: 3.
Evaluation of Mobile Apps for Informal Caregivers of People Living With Dementia
ClinicalTrials.gov study NCT05217004. IPD Sharing: YES. Countries: 1. Publications: 8.
Acceptance and Commitment Therapy for Informal Caregivers of People With Dementia
ClinicalTrials.gov study NCT05064969. IPD Sharing: YES. Countries: 1. Publications: 1.
Effectiveness of an Online Training and Support Program (iSupport) for Informal Dementia Caregivers
ClinicalTrials.gov study NCT04104568. IPD Sharing: NO. Countries: 1. Publications: 2.
Patient and Caregiver Participation Through an Educational Health Information Technology System ("BMT Roadmap") in the Context of Hematopoietic Cell Transplantation
ClinicalTrials.gov study NCT03161665. IPD Sharing: Not stated. Countries: 1. Publications: 1.
Building Resiliency in Dyads of Patients With an ANI Admitted to the Neuro-ICU and Their Informal Caregivers
ClinicalTrials.gov study NCT05157880. IPD Sharing: NO. Countries: 1. Publications: 1.
Web-based Intervention for Lung Cancer Patients and Their Informal Caregivers
ClinicalTrials.gov study NCT00365963. IPD Sharing: Not stated. Countries: 1. Publications: 3.
CHESS Caregivers Study: Web-based Support for Informal Caregivers in Cancer
ClinicalTrials.gov study NCT00214162. IPD Sharing: Not stated. Countries: 1. Publications: 7.
Intervention in Informal Caregivers Who Care Older People After a Stroke: a Pilot Study in Northern Portugal
ClinicalTrials.gov study NCT02074501. IPD Sharing: Not stated. Countries: 1. Publications: 7.
Technologies to Reduce Caregiver Burden for Informal Caregivers of People With Dementia
ClinicalTrials.gov study NCT02733939. IPD Sharing: UNDECIDED. Countries: 1. Publications: 1.
Improvement of Information to Cancer Patients' Caregivers
ClinicalTrials.gov study NCT02380469. IPD Sharing: Not stated. Countries: 1. Publications: 4.
A Novel Health Information Technology System (BMT Roadmap) for Pediatric BMT Patients and Caregivers
ClinicalTrials.gov study NCT02409121. IPD Sharing: Not stated. Countries: 1. Publications: 2.
Internet-based Treatment for Informal Caregivers in Lithuania LINGI
ClinicalTrials.gov study NCT04052724. IPD Sharing: NO. Countries: 1. Publications: 1.
Bibliotherapy for Improving Caregiving Appraisal Among Informal Caregivers of People With Dementia: A Pilot RCT
ClinicalTrials.gov study NCT03852121. IPD Sharing: NO. Countries: 1. Publications: 10.
Systematic Care for Informal Caregivers of Dementia Patients: An Efficient Approach?
ClinicalTrials.gov study NCT00147693. IPD Sharing: Not stated. Countries: 1. Publications: 1.
Tele-based Psychological Emotional Support for Informal CARegivers of COVID-19 Patients in Intensive Care
ClinicalTrials.gov study NCT04409821. IPD Sharing: NO. Countries: 1. Publications: 0.
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