title: Assessing non-response bias in pediatric palliative care research.
abstract: National experts have recognized a need for increased research in pediatric palliative care. However, when conducting research it is important to use rigorous methods, report significant and non-significant findings, and include information on responders and non-responders. Most studies do not present information on non-responders, yet this is critical as the results many not be generalizable if there are inherent differences between the two groups. Using survey data from parents whose children with life-limiting illnesses were enrolled in Florida's publicly funded pediatric palliative care program called Partners in Care: Together for Kids; this study investigates whether non-response bias exists, and if so, what characteristics are associated with non-response. Bivariate and multivariate analyses were conducted to determine whether individual characteristics differed between responders and non-responders. Throughout our analyses, we conducted the analyses using different ways in which 'non-response' can be defined. Our results suggest that regardless of how non-response is defined, Black, non-Hispanic parents were less likely to participate than White non-Hispanic parents. However, we also found that of the Black, non-Hispanic parents who did not participate, their primary reason for doing so was that they had non-working or disconnected phone numbers. Only 3% of the Black, non-Hispanic parents who did not participate flatly refused. Information from this study can be used to design interventions aimed at increasing minority participation in pediatric palliative care research.
authors.affiliation: Departments of Epidemiology and Health Policy Research, University of Florida, Gainesville FL, USA. cak@ichp.ufl.edu
authors.forename: Caprice A
authors.initials: CA
authors.lastname: Knapp
authors.forename: Vanessa L
authors.initials: VL
authors.lastname: Madden
authors.forename: Charlotte
authors.initials: C
authors.lastname: Curtis
authors.forename: Phyllis J
authors.initials: PJ
authors.lastname: Sloyer
authors.forename: Elizabeth A
authors.initials: EA
authors.lastname: Shenkman
mesh_terms: D000293:Adolescent; D015982:Bias; D044383:Black People; D002648:Child; D002675:Child, Preschool; D005260:Female; D005380:Financing, Government; D005431:Florida; D019538:Health Care Surveys / Q000706:statistics & numerical data*; D006297:Health Services Accessibility / Q000706:statistics & numerical data; D006630:Hispanic or Latino; D006801:Humans; D007223:Infant; D008297:Male; D008913:Minority Groups; D010166:Palliative Care; D010290:Parents / Q000523:psychology; D010372:Pediatrics; D045808:Refusal to Participate / Q000208:ethnology / Q000706:statistics & numerical data; D012107:Research Design; D013689:Telephone / Q000600:supply & distribution; D055815:Young Adult; D001741:Black or African American