Survey nonresponse among informal caregivers: effects on the presence and magnitude of associations with caregiver burden and satisfaction.
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.



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.



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.



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.
Department of Epidemiology, University of Groningen, University Medical Center Groningen, PO Box 30.001, Groningen, 9700 RB, The Netherlands. m.oldenkamp@umcg.nl.|Healthy Ageing, Population and Society, HAPS, University of Groningen, Groningen, The Netherlands. m.oldenkamp@umcg.nl.
Marloes
M
Oldenkamp
Department of Sociology, University of Groningen, Grote Rozenstraat 31, Groningen, 9712 TG, The Netherlands.|Healthy Ageing, Population and Society, HAPS, University of Groningen, Groningen, The Netherlands.
Rafael P M
RP
Wittek
Department of Health Sciences, Health Psychology, University of Groningen, University Medical Center Groningen, PO Box 30.001, Groningen, 9700 RB, The Netherlands.
Mariët
M
Hagedoorn
Department of Epidemiology, University of Groningen, University Medical Center Groningen, PO Box 30.001, Groningen, 9700 RB, The Netherlands.|Healthy Ageing, Population and Society, HAPS, University of Groningen, Groningen, The Netherlands.
Ronald P
RP
Stolk
Department of Epidemiology, University of Groningen, University Medical Center Groningen, PO Box 30.001, Groningen, 9700 RB, The Netherlands.|Healthy Ageing, Population and Society, HAPS, University of Groningen, Groningen, The Netherlands.
Nynke
N
Smidt
D000223:Adaptation, Psychological; D000328:Adult; D015982:Bias; D017028:Caregivers / Q000706:statistics & numerical data; D016009:Chi-Square Distribution; D015331:Cohort Studies; D005260:Female; D006296:Health Services; D006801:Humans; D016015:Logistic Models; D008297:Male; D008875:Middle Aged; D010549:Personal Satisfaction; D012106:Research; D035842:Research Subjects; D011795:Surveys and Questionnaires
Caregiving research; Informal care; Nonconsent bias; Nonresponse bias; Research participation