The Lifelines Cohort Study: a data source available for studying informal caregivers’ experiences and the outcomes of informal caregiving

Oldenkamp, Marloes; Hagedoorn, Mariët; Stolk, Ronald P.; Wittek, Rafael; Smidt, Nynke

doi:10.1186/s40639-017-0035-1

Cited by 5 publications

(4 citation statements)

References 36 publications

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“…Between May 2013 and July 2014, the informal care questionnaire was distributed to 2002 informal caregivers (575 paper questionnaires, 1427 online questionnaires). The informal care questionnaire was completed by 965 caregivers (overall response rate 48%, response rate paper questionnaire 61% and response rate online questionnaire 43%) (for more information see Oldenkamp et al., , ). Of those, 333 were working adult‐child caregivers (35% of 965 informal caregivers) who were included in the current study (reasons for exclusion: 311 not working, 79 self‐employed, 217 no adult‐child caregiver, 25 missing value(s), 1 extreme outlier on total hours of care provision).…”

Section: Resultsmentioning

confidence: 99%

“…In line with the participant's preference, which was known by the Lifelines Cohort Study, this was a paper questionnaire (to be returned with an enclosed reply envelope) or an online questionnaire (to be completed over the web). Within Lifelines ICAS, no reminders were sent, due to logistical and financial reasons (see also Oldenkamp, Hagedoorn, Stolk, Wittek, & Smidt, ; Oldenkamp, Wittek, Hagedoorn, Stolk, & Smidt, ). For this study, we used data from adult‐child caregivers who were employed (>1 hr of paid work a week).…”

Section: Methodsmentioning

confidence: 99%

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Combining informal care and paid work: The use of work arrangements by working adult-child caregivers in the Netherlands

Oldenkamp

Bültmann

Wittek

et al. 2017

Health Soc Care Community

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An increasing number of people combine paid work with the provision of informal care for a loved one. This combination of work and care may cause difficulties, necessitating adaptations at work, i.e. work arrangements. The present study explores what types of work arrangements are used by working caregivers, and which caregiver, care and work characteristics are associated with the use of these work arrangements.Within the Lifelines Informal Care Add-on Study (Lifelines ICAS), data on 965 Dutch informal caregivers in the North of the Netherlands were collected between May 2013 and July 2014 (response rate 48%), and data on 333 working adult-child caregivers (aged 26-68 years, 82% female) were used in this study. A small majority (56%) of the working caregivers used one or more work arrangement(s): taking time off (41%), individual agreements with supervisor (30%), formal care leave arrangement (13%), and reduction in paid work hours (6%). Logistic regression analyses showed that long working hours (OR 1.06, 95% CI 1.01-1.08), and the experience of more health problems (OR 2.54, 95% CI 1.56-4.05) or a disrupted schedule due to caregiving (OR 2.50, 95% CI 1.66-3.78) increased the chance to have used one or more work arrangements. Lower educated working caregivers were less likely to have used a formal care leave arrangement (tertiary vs. primary education OR 2.75, 95% CI 1.13-6.67; tertiary vs. secondary education OR 1.27, 95% CI 1.27-5.09). Policy makers should inform working caregivers about the availability of the different work arrangements, with specific attention for low educated working caregivers. Employers need to consider a more caregiver-friendly policy, as almost half of the working adult-child caregivers did not use any work arrangement. K E Y W O R D Semployment, informal caregivers, organisation of work, quantitative surveys, working caregivers

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Section: Resultsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Combining informal care and paid work: The use of work arrangements by working adult-child caregivers in the Netherlands

Oldenkamp

Bültmann

Wittek

et al. 2017

Health Soc Care Community

View full text Add to dashboard Cite

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“…Despite these efforts, females were overrepresented in both the caregiver and care recipient samples. However, this overrepresentation of females is consistently observed in studies on informal care [ 93 – 95 ] and reflects their actual dominance in informal care provision according to European statistics [ 13 , 96 ] and their greater willingness to participate in surveys in general [ 97 , 98 ].…”

Section: Strengths and Limitationsmentioning

confidence: 85%

Cohort profile: The ENTWINE iCohort study, a multinational longitudinal web-based study of informal care

Elayan,

Bei,

Ferraris

et al. 2024

PLoS ONE

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Informal care is a key pillar of long-term care provision across Europe and will likely play an even greater role in the future. Thus, research that enhances our understanding of caregiving experiences becomes increasingly relevant. The ENTWINE iCohort Study examines the personal, psychological, social, economic, and geographic factors that shape caregiving experiences. Here, we present the baseline cohort of the study and describe its design, recruitment methods, data collection procedures, measures, and early baseline findings. The study was conducted in nine countries: Germany, Greece, Ireland, Israel, Italy, the Netherlands, Poland, Sweden, and the United Kingdom. The study comprised a web-based longitudinal survey (baseline + 6-month follow-up) and optional weekly diary assessments conducted separately with caregivers and care recipients. From 14 August 2020 to 31 August 2021, 1872 caregivers and 402 care recipients were enrolled at baseline. Participants were recruited via Facebook and, to a lesser extent, via the study website or caregiver/patient organisations. Caregiver participants were predominantly female (87%) and primary caregivers (82%), with a median age of 55 years. A large proportion (80%) held at least post-secondary education, and two-thirds were married/partnered. Over half of the caregivers were employed (53%) and caring for a person with multiple chronic conditions (56%), and nearly three-quarters were caring for either a parent (42%) or a spouse/partner (32%). About three-quarters of care recipient participants were female (77%), not employed (74%), and had at least post-secondary education (77%), with a median age of 55 years. Over half of the care recipients were married/partnered (59%), receiving care primarily from their spouses/partners (61%), and diagnosed with multiple chronic conditions (57%). This study examining numerous potential influences on caregiving experiences provides an opportunity to better understand the multidimensional nature of these experiences. Such data could have implications for developing caregiving services and policies, and for future informal care research.

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“…[ 10 11 ] Therefore, it is important to support family caregivers and identify their needs to provide quality care to patients with chronic diseases. [ 12 ] Compared to the caregivers of other chronic diseases patients, caregivers of hemodialysis patients face different issues and problems, such as frequent hospitalizations and the use of various medications by the patient. In addition, these caregivers often spend much time caring for these patients and endure a lot of fatigue and care tension, which increases their stress.…”

Section: Introductionmentioning

confidence: 99%

Development and psychometric evaluation of the perceived care tension questionnaire for caregivers of hemodialysis patients

Rabiei

Kheiri

Masoudi

2021

Journal of Education and Health Promotion

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BACKGROUND: The complex, multifaceted care environment and the threatening situation of caring for hemodialysis patients cause tension in their family caregivers. Due to the severe tension, family caregivers are likely to ignore their basic needs and only pay attention to the patient's needs and related issues. This study was conducted with the aim of designing and evaluating the Perceived Care tension Questionnaire for Caregivers of Hemodialysis Patients (PCTQHFC). MATERIALS AND METHODS: The present study was a sequential exploratory mixed methods study of scale development variant conducted in two phases: qualitative and quantitative. This study was conducted in 2019 in Shahrekord. The qualitative phase included item development and scale development. In the quantitative phase (Item Analysis), the validation characteristics of the tool were examined using face, content and construct validity, and its reliability by internal consistency and stability. Findings were performed using software SPSS 18. RESULTS: Principal components analysis with orthogonal rotation to generate factors, showed that five factors, namely emotional exhaustion, inadequate social support, care burden, confusion and ambiguity and lack of adaptability skills had an eigenvalue of higher than 1, so that they explained, respectively, 75.98%, 61.36%, 72.49%, 76.33%, and 70.31% of the total variance. The internal consistency was obtained 0.811 and the inter-class correlation coefficient for the whole instrument 0.832. CONCLUSION: PCTQHFC is a culturally appropriate measure with strong psychometric properties. The instrument designed in this study measures the care tension of hemodialysis patients. Therefore, researchers, health-care providers, and community health policymakers can plan and implement interventions to reduce the tension of caregivers of hemodialysis patients by analyzing and identifying the tensions of caregivers.

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The Lifelines Cohort Study: a data source available for studying informal caregivers’ experiences and the outcomes of informal caregiving

Cited by 5 publications

References 36 publications

Combining informal care and paid work: The use of work arrangements by working adult-child caregivers in the Netherlands

Combining informal care and paid work: The use of work arrangements by working adult-child caregivers in the Netherlands

Cohort profile: The ENTWINE iCohort study, a multinational longitudinal web-based study of informal care

Development and psychometric evaluation of the perceived care tension questionnaire for caregivers of hemodialysis patients

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