In 2022, nearly a quarter of employees surveyed in the United States reported that their employer offers subsidized or complimentary child or daycare benefit. This statistic represents the share of employees in the United States that had access to caregiving benefits in 2022, by type.

The Older Persons and Informal Caregivers Survey - Minimum DataSet (TOPICS-MDS) is a public data repository which contains information on the physical and mental health and well-being of older persons and informal caregivers and their care use across the Netherlands. The database was developed at the start of The National Care for the Elderly Programme (‘Nationaal Programma Ouderenzorg’ - NPO) on behalf of the Organisation of Health Research and Development (ZonMw - The Netherlands), in part to ensure uniform collection of outcome measures, thus promoting comparability between studies.53 Different research projects have contributed data to this initiative, resulting in a pooled dataset with cross-sectional and (partly) longitudinal data of >43,000 older persons and >9,000 informal caregivers. Out of these numbers, a number of 7,600 concerns care receiver - caregiver dyads of whom information on both the care receiver and caregiver is available.Since September 2014, TOPICS-MDS data are also collected within the ZonMw funded ‘Memorabel’ programme. In Memorabel round 1 through 4, 11 different research projects have collected TOPICS-MDS data, which has resulted in a pooled dataset with cross-sectional and (partly) longitudinal data of 1,400 older persons with dementia and about 950 informal caregivers. Out of these numbers, a number of 919 concerns care receiver - caregiver dyads of whom information on both the care receiver and caregiver is available.More TOPICS-MDS data from Memorabel are expected to become available in 2022 and onwards.More information on TOPICS-MDS can be found on https://topics-mds.eu .53 Different research projects have contributed data to this initiative, resulting in a pooled dataset with cross-sectional and (partly) longitudinal data of >43,000 older persons and >9,000 informal caregivers. Out of these numbers, a number of 7,600 concerns care receiver - caregiver dyads of whom information on both the care receiver and caregiver is available.Since september 2014, TOPICS-MDS data are also collected within the ZonMw funded ‘Memorabel’ programme. These data will become available in 2020 and onwards.More information on TOPICS-MDS can be found on https://topics-mds.eu .

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).

Table: Study details and associated files

    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

Description of the files to be uploaded

Study 1: Perceived life balance among young adult students: a comparison between caregivers and non-caregivers

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 -

Population: young adult caregivers and young adult non-caregivers aged 18-25 years studying in the Netherlands;

Number of participants: 320 participants in total (74 young adult caregivers and 246 young adult non-caregivers)

Time point of measurement: Data was collected from December 2020 till March 2022

Type of data: quantitative

Measurements included, topics covered: 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])

Short procedure conducted to receive data: 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

Study 2: Examining the relationship of positive aspects of caregiving with relational factors among young adult caregivers

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 -

Population: young adult caregivers aged 18-25 years studying in the Netherlands;

Number of participants: 74 young adult caregivers

Time point of measurement: Data was collected from December 2020 till March 2022

Type of data: quantitative

Measurements included, topics covered: positive aspects of caregiving (positive aspects of caregiving scale [5]), relationship quality (Relationship Assessment Scale [6]), collaborative coping (Perception of Collaboration Questionnaire [7] )

Short procedure conducted to receive data: 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.

Study 3: Exploring the support needs of young adult caregivers, their issues, and preferences towards a web-based tool

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 –

Population: young adult caregivers aged 18-25 years studying in the Netherlands; 13 participants in total

Time point of measurement: data was collected from October 2021 till February 2022

Type of data: qualitative and quantitative

Measurements included, topics covered: Caregiving challenges, support needs and barriers, usability needs, preferences and issues towards eHealth tool

Short procedure conducted to receive data: Online interviews

ENTWINE_Needs_Web-basedTools_YACs_Questionnaires_RawData: Excel sheet having the quantitative questionnaire raw data with the following metadata

Population: young adult caregivers aged 18-25 years studying in the Netherlands; 13 participants in total

Time point of measurement: data was collected from October 2021 till February 2022

Type of data: qualitative and quantitative

Measurements included, topics covered: 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])

Short procedure conducted to receive data: Online questionnaire

Data collection details

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.

Terms of use

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.

References

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

In the United States, far more children died due to their caregivers having a drug abuse issue than an alcohol abuse issue. In 2022, a total of 253 child fatalities occurred in a household with a drug abuse risk factor.

Informal caregivers of persons with mental disorders encounter various challenges in their role of caregiving. As such, they require support to enable them to cope with the demands of their caregiving. There is comprehensive evidence on the experiences of burden among informal caregivers in mental health; however, there is a limited number of studies that report on the mental health services aimed specifically at supporting informal caregivers in their role. To address this gap, this study aimed to explore the perspectives of the service providers regarding the challenges encountered by informal caregivers and the mental health services available to support these caregivers. Semi-structured interviews were conducted with mental health coordinators at provincial, district, and sub-district level and mental health professionals from a district hospital. Focus group discussions were conducted with primary healthcare supervisors and community health workers in Bushbuckridge municipality, South Africa at participants’ workplaces and sub-district offices. Semi-structured interviews and focus group guides with semi-structured questions were used to direct data collection in August 2022–January 2023. All interviews were audio recorded and transcribed verbatim. Reflexive thematic inductive analysis was conducted using NVivo 12 software. Three themes were identified, namely perceived caregiving consequences and related factors, current state of mental health services, and factors affecting delivery of informal caregiver mental health services. The service providers acknowledged the negative consequences faced by informal caregivers. This includes the experience of caregiver burden which was attributed to the uncooperative and violent behaviours exhibited by the mental health care users. The current state of formal and informal community mental health services was described and considered inadequate to meet informal caregivers’ needs. Various personal, health system, and contextual factors influencing the provision of caregiver-orientated services were identified. The findings revealed the need for intersectoral collaborations between hospital-based and community-based mental health service providers, and community stakeholders to ensure provision of user-friendly and accessible mental health services for informal caregivers.

Number of individuals who received a tax credit for caregivers and the average amount paid, specifically for the component where the person being helped is of age and has an impairment (with or without cohabitation). The breakdown is available by age, gender and administrative region, for tax years 2020 to 2022, as of September 30, 2023.

In 2022, about 95,794 children in the United States had a caregiver with a drug abuse risk factor. Furthermore, about 99,255 children had a caregiver with a domestic violence risk factor in that year.

The WORLD Policy Analysis Center (WORLD) is committed to improving the quantity and quality of globally comparative data available to policymakers, citizens, civil society, and researchers on laws and policies that work to support human rights, including economic opportunity, social and civic engagement, human health, development, well-being, and equity. The WORLD Infant Caregiving Policies 2022 dataset was created to assess progress on laws that allow working parents to support their infants' caregiving needs and health through a systematic review of legislation governing paid parental leave and breastfeeding breaks at work across all 193 UN countries as of 2022. The dataset covers paid leave reserved for mothers of infants, paid leave reserved for fathers of infants, shared paid parental leave, and guarantees of breastfeeding breaks at work. The data assess key features of leave such as duration, wage replacement rate, job protection, and who is covered by paid leave laws. Longitudinal data is included on the availability of paid parental leave from 1995 to 2022.

Analysis of ‘Department for the Aging (DFTA) Caregiver Resources Contracted Providers’ provided by Analyst-2 (analyst-2.ai), based on source dataset retrieved from https://catalog.data.gov/dataset/b1e17564-7323-4ebf-ad05-82983fb9af9f on 27 January 2022.

--- Dataset description provided by original source is as follows ---

Listing of DFTA Caregivers Contracts Information and Hours of Operation.

--- Original source retains full ownership of the source dataset ---

According to a survey conducted in July 2022 among married women in Japan, over half of the respondents aged 60 and above had experience with providing care for a family member. Around 15.5 percent of respondents aged 60 to 69 reported currently providing care for a family member.

This survey provides nationally representative estimates on the characteristics, living arrangements, and service accessibility of noninstitutionalized children who were living apart from their parents (in foster care, grandparent care or other nonparental care) and who were aged 0 to 16 years in 2011-2012. Data on the well-being of the children and of their caregivers are also available. The children’s nonparental care status was identified in a previous SLAITS survey, the 2011-2012 National Survey of Children’s Health. Units of Response: Caregiver Type of Data: Survey Tribal Data: No Periodicity: One-time Demographic Indicators: Disability;Ethnicity;Household Income;Household Size;Housing Status;Race;Sex SORN: https://www.federalregister.gov/documents/2022/09/19/2022-20139/privacy-act-of-1974-system-of-records Data Use Agreement: No Data Use Agreement Location: Unavailable Granularity: Household Spatial: United States Geocoding: Unavailable

Title:

Minimal Data Set for the Reproduction of Findings in "Elayan et al., Cohort Profile: The ENTWINE iCohort Study, a Multinational Longitudinal Web-Based Study of Informal Care".

Study Summary:

The data sets provided herein are derived from the ENTWINE iCohort Study, a multinational web-based cohort study employing an intensive longitudinal design. The study integrates a two-wave panel survey (baseline and 6-month follow-up) with optional weekly diary assessments. The cohort comprises caregivers and care recipients from nine countries: the United Kingdom, the Netherlands, Italy, Sweden, Israel, Germany, Greece, Poland, and Ireland. The study aimed to examine the influence of personal, psychological, social, economic, and geographic factors on caregiving experiences.

Participants were eligible if they met the following criteria: 1) residency in a participating country; 2) capability to respond to surveys in English, Swedish, German, Dutch, Italian, Greek, Hebrew, or Polish; 3) access to the internet and ability to use it; 4) at least 18 years of age; 5) self-declared cognitive and physical capacity to complete the surveys; 6) either providing care to an adult (aged ≥ 18 years) with a chronic health condition, disability, or other care need, or receiving care from an adult due to similar conditions.

The detailed methodology and results of the study can be found in the associated manuscript. For the complete survey questionnaires, please refer to: Morrison V, Zarzycki M, Vilchinsky N, Sanderman R, Lamura G, Fisher O, et al. A Multinational Longitudinal Study Incorporating Intensive Methods to Examine Caregiver Experiences in the Context of Chronic Health Conditions: Protocol of the ENTWINE-iCohort. Int J Environ Res Public Health. 2022;19. doi: 10.3390/ijerph19020821

Data files:

The repository contains the following data files:

"cg_minimal_dataset" (available in dta, sav, rds, and xlsx formats): This is a minimal data set containing de-identified and processed data derived from the ENTWINE iCohort Caregiver Baseline Survey. The variables present in this data set are detailed in the associated codebook, "cg_minimal_dataset_codebook".

"cr_minimal_dataset" (available in dta, sav, rds, and xlsx formats): This is a minimal data set containing de-identified and processed data derived from the ENTWINE iCohort Care Recipient Baseline Survey. The variables present in this data set are detailed in the associated codebook, "cr_minimal_dataset_codebook".

Analysis of ‘Department for the Aging (DFTA) Bottom Line Budgets of Caregiver Resources Contracted Providers’ provided by Analyst-2 (analyst-2.ai), based on source dataset retrieved from https://catalog.data.gov/dataset/22aa2ede-a573-4ba2-9bbd-07949c6415c0 on 13 February 2022.

--- Dataset description provided by original source is as follows ---

Bottom Line Budgets of contracted agencies providing Caregiver Resources Services.

--- Original source retains full ownership of the source dataset ---

Between 2022 and 2023, among surveyed informal caregivers (usually family or friends) of hospice patients in the United States, the majority of caregivers rated the hospice agency a 9 or a 10 out of 10. Only five percent gave the hospice agency a rating of 6 or lower.

2015-2022. The data in this filtered view come from the BRFSS data set.

Purpose: Best practices recommend promoting the use of the home language and allowing caregivers to choose the language(s) that they want to use with their child who is deaf or hard of hearing (DHH). We examined whether Spanish-speaking caregivers of children who are DHH receive professional recommendations on oral bilingualism that follow best practices. We also assessed whether professional recommendations, caregiver beliefs, and language practices had an impact on child language(s) proficiency. Method: Sixty caregivers completed a questionnaire on demographic questions, language(s) use and recommendations, beliefs on bilingualism, and child language proficiency measures in English, Spanish, and American Sign Language (ASL). Professional recommendations on oral bilingualism were reported descriptively, and linear regression was used to identify the predictors of child language(s) proficiency. Results: We found that only 23.3% of the caregivers were actively encouraged to raise their child orally bilingual. Language practices predicted child proficiency in each language (English, Spanish, and ASL), but professional recommendations and caregiver beliefs did not. Conclusions: Our results revealed that most caregivers received recommendations that do not follow current best practices. Professional training is still needed to promote bilingualism and increase cultural competence when providing services to caregivers who speak languages different from English. Supplemental Material S1. Survey items and response scoring. Benítez-Barrera, C., Reiss, L., Majid, M., Chau, T., Wilson, J., Rico, E. F., Bunta, F., Raphael, R. M., & de Diego-Lázaro, B. (2023). Caregiver experiences with oral bilingualism in children who are deaf and hard of hearing in the United States: Impact on child language proficiency. Language, Speech, and Hearing Services in Schools, 54(1), 224–240. https://doi.org/10.1044/2022_LSHSS-22-00095

According to a survey conducted by iResearch in January 2022, **** percent of respondents from higher-tier cities and **** percent of respondents from China's lower-tier cities said that the mother was the main caregiver for children at home. Only **** percent of respondents from lower-tier cities said both parents were responsible for taking care of their babies.

Number of individuals who received a tax credit for a caregiver and the average amount paid, specifically for the component where there is cohabitation with the person being cared for (other than the spouse) and the person being cared for is 70 years of age or older without being disabled. The breakdown is available by age, gender and administrative region, for tax years 2020 to 2022, as of September 30, 2023.

Background: The mental and financial strain linked to unpaid caregiving has been amplified during the COVID-19 pandemic. In sub-Saharan Africa, carers of adolescents living with HIV (ALHIV) are critical for maintenance of optimum HIV treatment outcomes. However, the ability of caregivers to provide quality care to ALHIV is undermined by their ability to maintain their own wellbeing due to lack of finances and poor mental health. Nudges are a behavioural economics strategy used to influence healthcare decision-making by targeting behavioural barriers. Nudges such as cash incentives and SMS reminders are linked to improved health and wellbeing. There is a lack of evidence on whether these nudges could promote caregiver wellbeing during COVID-19.Objectives: To compare the feasibility, acceptability and preliminary effectiveness of an economic incentive nudge package (cash + motivational SMS) for improving caregiver wellbeing.Methods: We conducted a pilot individual-randomised controlled trial (November 2021-March 2022), with N=100 caregivers of ALHIV (10–19-year-olds), sampled from HIV clinics in Durban, KwaZulu-Natal. Participants were randomly assigned to the intervention or control arm. The intervention arm (n=50) received an unconditional cash incentive (~ $23 USD) via mobile banking services and a positive wellbeing SMS per month, over a three-month period. The control arm (n=50) received one standard SMS encouraging linkage to care. The intervention was co-designed with our caregiver advisory board. The nudge targeted three behavioural economic principles (aspiration framing, altruism, loss aversion), drawing on facilitators of wellbeing in this setting. Participants were interviewed at baseline and end-line (12 weeks) to collect socio-demographic, health, and wellbeing data. The primary outcome was change in wellbeing measured using the Mental Health Continuum Short-Form. Caregivers (n=8) in each arm underwent in-depth interviews to understand lived experiences and perceptions of the intervention. An intention-to-treat analysis was conducted. Qualitative data were analysed using the framework method. For more information on the trial, contact Dr Darshini Govindasamy (Darshini.Govindasamy@mrc.ac.za).

BackgroundLung cancer is one of the common cancers and the leading cause of death. Tremendous caregiving burden of informal caregivers of lung cancer causes psychological disorders, such as anxiety and depression. Interventions for informal caregivers of patients with lung cancer to improve their psychological health, which ultimately leads to patients’ positive health outcomes, are crucial. A systematic review and meta-analysis was conducted to: 1) evaluate the effect of non-pharmacological interventions on the outcomes of depression and anxiety for lung cancer patients’ informal caregivers; and 2) compare the effects of interventions with differing characteristics (i.e. intervention types, mode of contact, and group versus individual delivery).MethodsFour databases were searched to identify relevant studies. Inclusion criteria for the articles were peer-reviewed non-pharmacological intervention studies on depression and anxiety in lung cancer patients’ informal caregivers published between January 2010 and April 2022. Systematic review procedures were followed. Data analysis of related studies was conducted using the Review Manager Version 5.4 software. Intervention effect sizes and studies’ heterogeneity were calculated.ResultsEight studies from our search were eligible for inclusion. Regarding total effect for the caregivers’ levels of anxiety and depression, results revealed evidence for significant moderate effects of intervention on anxiety (SMD -0.44; 95% CI, -0.67, -0.21; p = 0.0002) and depression (SMD -0.46; 95% CI, -0.74, -0.18; p = 0.001). Subgroup analyses for both anxiety and depression of informal caregivers revealed moderate to high significant effects for specific intervention types (cognitive behavioral and mindfulness combined with psycho-education interventions), mode of contact (telephone-based interventions), and group versus individual delivery.ConclusionThis review provides evidence that cognitive behavioral and mindfulness-based, telephone-based, individual or group-based interventions were effective for informal caregivers of lung cancer patients. Further research is needed to develop the most effective intervention contents and delivery methods across informal caregivers with larger sample size in randomized controlled trials.