title: When "no" might not quite mean "no"; the importance of informed and meaningful non-consent: results from a survey of individuals refusing participation in a health-related research project.
abstract: BACKGROUND
  Low participation rates can lead to sampling bias, delays in completion and increased costs. Strategies to improve participation rates should address reasons for non-participation. However, most empirical research has focused on participants' motives rather than the reasons why non-participants refuse to take part. In this study we investigated the reasons why older people choose not to participate in a research project.
  
  
  METHODS
  Follow-up study of people living in Tayside, Scotland who had opted-out of a cross-sectional survey on activities in retirement. Eight hundred and eighty seven people aged 65-84 years were invited to take part in a home-based cross-sectional survey. Of these, 471 refused to take part. Permission was obtained to follow-up 417 of the refusers. Demographic characteristics of people who refused to take part and the reasons they gave for not taking part were collected.
  
  
  RESULTS
  54% of those invited to take part in the original cross-sectional survey refused to do so. However, 61% of these individuals went on to participate in the follow-up study and provided reasons for their original refusal. For the vast majority of people initial non-participation did not reflect an objection to participating in research in principle but frequently stemmed from barriers or misunderstandings about the nature or process of the project itself. Only 28% indicated that they were "not interested in research". The meaningfulness of expressions of non-consent may therefore be called into question. Hierarchical log-linear modelling showed that refusal was independently influenced by age, gender and social class. However, this response pattern was different for the follow-up study in which reasons for non-participation in the first survey were sought. This difference in pattern and response rates supports the likely importance of recruitment issues that are research and context specific.
  
  
  CONCLUSIONS
  An expression of non-consent does not necessarily mean that a fully informed evaluation of the pros and cons of participation and non-participation has taken place. The meaningfulness of expressions of non-consent may therefore be a cause for concern and should be subject to further research. Many reasons for non-participation may be specific to a particular research topic or population. Information sheets should reflect this by going beyond standardised guidelines for their design and instead proactively seek out and address areas of concern or potential misunderstanding. The use of established behavioural theory in their design could also be considered.
authors.affiliation: Section of Public Health, Division of Community Health Sciences, Mackenzie Building, Kirsty Semple Way, University of Dundee, Dundee, UK. b.y.williams@chs.dundee.ac.uk
authors.forename: Brian
authors.initials: B
authors.lastname: Williams
authors.forename: Linda
authors.initials: L
authors.lastname: Irvine
authors.forename: Alison R
authors.initials: AR
authors.lastname: McGinnis
authors.forename: Marion E T
authors.initials: ME
authors.lastname: McMurdo
authors.forename: Iain K
authors.initials: IK
authors.lastname: Crombie
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D001294:Attitude to Health; D016009:Chi-Square Distribution; D003430:Cross-Sectional Studies; D005260:Female; D006302:Health Services Research; D006801:Humans; D007258:Informed Consent / Q000523:psychology / Q000706:statistics & numerical data; D007407:Interviews as Topic; D016014:Linear Models; D008297:Male; D009042:Motivation; D009043:Motor Activity; D045808:Refusal to Participate / Q000523:psychology / Q000706:statistics & numerical data; D012606:Scotland; D011795:Surveys and Questionnaires