Background: Informal caregiving is becoming more relevant with current trends such as population ageing. However, little is known about nonconsent and nonresponse bias in caregiving research. We investigated nonconsent and nonresponse bias in a sample of informal caregivers who participated in the LifeLines Cohort Study, and were invited for participation in an additional caregiving study.
Methods: We compared socio-demographic characteristics, caregiver health, caregiving situation, and caregiver outcomes of nonconsent and consent caregivers, and nonresponse and response caregivers, on LifeLines data, by using Chi-square tests, Independent Sample T-tests, and Mann-Whitney tests. Furthermore, we examined the influence of nonconsent and nonresponse on the presence and magnitude of the associations between caregiver characteristics and two commonly used caregiving outcomes (caregiver burden and satisfaction). We conducted multinomial logistic regression analyses, including interaction terms with nonconsent and nonresponse.
Results: Within a subcohort of 8443 caregivers, aged >18 years, 5095 caregivers (60 %) gave consent for participation in the caregiving study. Within the subgroup of 2002 caregivers who received the questionnaire, 965 (48 %) responded. Caregivers who were highly involved in caregiving (i.e. high time investment, high caregiver burden), gave more commonly consent to participate, and responded more often to the questionnaire. Nonconsent and nonresponse influenced the associations between caregiver characteristics and caregiver burden for only a few characteristics, mainly indicating the level of caregiving involvement (e.g. time investment, caregiving duration). Especially for caregiver burden, these indicators were stronger for consent and response caregivers than for nonconsent and nonresponse caregivers.
Conclusions: Our findings are important for caregiving research, as they emphasized that participation might not be evenly distributed among caregivers, and that the possibility of nonconsent and nonresponse bias should be considered.
Download full-text PDF |
Source |
|---|---|
| http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4898385 | PMC |
| http://dx.doi.org/10.1186/s12889-016-2948-6 | DOI Listing |
Publication Analysis
Top Keywords
Similar Publications
Asking informed consent may lead to significant participation bias and suboptimal cardiovascular risk management in learning healthcare systems.
BMC Med Res Methodol
April 2023
Central Diagnostic Laboratory, Division of Laboratories, Pharmacy and Biomedical Genetics, University Medical Center Utrecht, Utrecht University, Utrecht, the Netherlands.
Background: The Utrecht Cardiovascular Cohort - CardioVascular Risk Management (UCC-CVRM) was set up as a learning healthcare system (LHS), aiming at guideline based cardiovascular risk factor measurement in all patients in routine clinical care. However, not all patients provided informed consent, which may lead to participation bias. We aimed to study participation bias in a LHS by assessing differences in and completeness of cardiovascular risk management (CVRM) indicators in electronic health records (EHRs) of consenting, non-consenting, and non-responding patients, using the UCC-CVRM as an example.
View Article and Find Full Text PDFEffect of weighting for sampling and non-response on estimates of STI prevalence in the third British National Survey of Sexual Attitudes and Lifestyles (Natsal-3).
Sex Transm Infect
November 2020
Institute for Global Health, University College London, London, UK.
Article Synopsis
- The study examines how missing data in STI surveys, due to factors like non-contact and non-consent, can lead to biased prevalence estimates, particularly when the missingness is linked to STI risk.
- Researchers analyzed the third National Survey of Sexual Attitudes and Lifestyles (Natsal-3), which sampled individuals aged 16-74 in Britain, to see how different types of missing data affected STI prevalence estimates.
- Results showed high rates of non-completion in both interviews (42.3%) and urine submissions (43.5%), with findings indicating that more vulnerable populations tended to participate less, thus resulting in lower STI prevalence estimates when accounting for these biases.
Survey nonresponse among informal caregivers: effects on the presence and magnitude of associations with caregiver burden and satisfaction.
BMC Public Health
June 2016
Department of Epidemiology, University of Groningen, University Medical Center Groningen, PO Box 30.001, Groningen, 9700 RB, The Netherlands.
Background: Informal caregiving is becoming more relevant with current trends such as population ageing. However, little is known about nonconsent and nonresponse bias in caregiving research. We investigated nonconsent and nonresponse bias in a sample of informal caregivers who participated in the LifeLines Cohort Study, and were invited for participation in an additional caregiving study.
View Article and Find Full Text PDFPredictors of non-response in a UK-wide cohort study of children's accelerometer-determined physical activity using postal methods.
BMJ Open
March 2013
MRC Centre of Epidemiology for Child Health, UCL Institute of Child Health, London, UK.
Objectives: To investigate the biological, social, behavioural and environmental factors associated with non-consent, and non-return of reliable accelerometer data (≥2 days lasting ≥10 h/day), in a UK-wide postal study of children's activity.
Design: Nationally representative prospective cohort study.
Setting: Children born across the UK, between 2000 and 2002.
The Knee Clinical Assessment Study-CAS(K). A prospective study of knee pain and knee osteoarthritis in the general population: baseline recruitment and retention at 18 months.
BMC Musculoskelet Disord
March 2006
Primary Care Sciences Research Centre, Keele University, Keele, North Staffordshire, ST5 5BG, UK.
Background: Selective non-participation at baseline (due to non-response and non-consent) and loss to follow-up are important concerns for longitudinal observational research. We investigated these matters in the context of baseline recruitment and retention at 18 months of participants for a prospective observational cohort study of knee pain and knee osteoarthritis in the general population.
Methods: Participants were recruited to the Knee Clinical Assessment Study-CAS(K)--by a multi-stage process involving response to two postal questionnaires, consent to further contact and medical record review (optional), and attendance at a research clinic.
Want AI Summaries of new PubMed Abstracts delivered to your In-box?
Enter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!