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Recruitment bias and characteristics of participants with severe cerebral palsy in a cross-sectional survey

Authors

  • Jackie Parkes,

    1. Jackie Parkes BNurs PhD NDN Senior Lecturer and Manager of the Northern Ireland Cerebral Palsy Register School of Nursing & Midwifery, Nursing-Midwifery Research Unit, Queen’s University Belfast, UK
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  • Collette Donnelly,

    1. Collette Donnelly BSc MSc RN R&D Doctoral Fellowship Student School of Nursing & Midwifery, Nursing-Midwifery Research Unit, Queen’s University Belfast, UK
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  • Brona McDowell,

    1. Brona McDowell BSc PhD Clinical Specialist Physiotherapist Gait Analysis Laboratory, Musgrave Park Hospital, Belfast Health and Social Care Trust, Belfast, UK
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  • Catherine Duffy

    1. Catherine Duffy MD FRCS Consultant Paediatric Orthopaedic Surgeon Musgrave Park Hospital, Belfast Health and Social Care Trust, Belfast, UK
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J. Parkes: e-mail: j.parkes@qub.ac.uk

Abstract

parkes j., donnelly c., mcdowell b. & duffy c. (2012) Recruitment bias and characteristics of participants with severe cerebral palsy in a cross-sectional survey. Journal of Advanced Nursing 68(2), 368–378.

Abstract

Aim.  This article is a report of recruitment bias in a sample of 5–25-year-old patients with severe cerebral palsy.

Background.  The way in which study participants are recruited into research can be a source of bias.

Method.  A cross-sectional survey of 5–25-year-old patients with severe cerebral palsy using standardized questionnaires with parents/carers was undertaken in 2007/2008. A case register was used as the sampling frame, and 260 families were approached: 178/260 (68%) responded and 82/260 families never replied (non-respondents). Among responders: 127/178 (71%) opted in to the study, but only 123/127 were assessed, and 82/178 were opted out (or refused). Multivariable logistic regression giving odds ratios was used to study the association between participant characteristics and study outcomes (responders vs. non-responders; opting in vs. opting out; assessed vs. eligible, but not assessed).

Results.  Responders (compared with non-responders) were significantly more likely to have a family member with cerebral palsy who was male and resident in more affluent areas. Families who opted in (compared with those opting out and refusing) were more likely to have a family member with cerebral palsy and intellectual impairment and to reside in certain geographical areas. Families who were actually assessed (compared with all eligible, but not assessed) were more likely to have a family member with cerebral palsy and intellectual impairment.

Conclusion.  Several sources of bias were identified during recruitment for this study. This has implications for the interpretation and conclusions of surveys of people with disabilities and complex needs.

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