title: Inviting parents to take part in paediatric palliative care research: a mixed-methods examination of selection bias.
abstract: BACKGROUND
  Recruitment to paediatric palliative care research is challenging, with high rates of non-invitation of eligible families by clinicians. The impact on sample characteristics is unknown.
  
  
  OBJECTIVE
  To investigate, using mixed methods, non-invitation of eligible families and ensuing selection bias in an interview study about parents' experiences of advance care planning (ACP).
  
  
  METHODS
  We examined differences between eligible families invited and not invited to participate by clinicians using (1) field notes of discussions with clinicians during the invitation phase and (2) anonymised information from the service's clinical database.
  
  
  METHODS
  Families were eligible for the ACP study if their child was receiving care from a UK-based tertiary palliative care service (Group A; N = 519) or had died 6-10 months previously having received care from the service (Group B; N = 73).
  
  
  RESULTS
  Rates of non-invitation to the ACP study were high. A total of 28 (5.4%) Group A families and 21 (28.8%) Group B families (p < 0.0005) were invited. Family-clinician relationship appeared to be a key factor associated qualitatively with invitation in both groups. In Group A, out-of-hours contact with family was statistically associated with invitation (adjusted odds ratio 5.46 (95% confidence interval 2.13-14.00); p < 0.0005). Qualitative findings also indicated that clinicians' perceptions of families' wellbeing, circumstances, characteristics, engagement with clinicians and anticipated reaction to invitation influenced invitation.
  
  
  CONCLUSIONS
  We found evidence of selective invitation practices that could bias research findings. Non-invitation and selection bias should be considered, assessed and reported in palliative care studies.
authors.affiliation: Louis Dundas Centre for Children's Palliative Care, Great Ormond Street Hospital, UCL Institute of Child Health, London, UK Health Experiences Institute, University of Oxford, Oxford, UK.
authors.forename: Joanna C
authors.initials: JC
authors.lastname: Crocker
authors.affiliation: Louis Dundas Centre for Children's Palliative Care, Great Ormond Street Hospital, UCL Institute of Child Health, London, UK Marie Curie Palliative Care Research Unit, UCL Division of Psychiatry, London, UK.
authors.forename: Emma
authors.initials: E
authors.lastname: Beecham
authors.affiliation: Louis Dundas Centre for Children's Palliative Care, Great Ormond Street Hospital, UCL Institute of Child Health, London, UK Florence Nightingale School of Nursing and Midwifery, King's College London, London, UK.
authors.forename: Paula
authors.initials: P
authors.lastname: Kelly
authors.affiliation: Louis Dundas Centre for Children's Palliative Care, Great Ormond Street Hospital, UCL Institute of Child Health, London, UK.
authors.forename: Andrew P
authors.initials: AP
authors.lastname: Dinsdale
authors.affiliation: Louis Dundas Centre for Children's Palliative Care, Great Ormond Street Hospital, UCL Institute of Child Health, London, UK.
authors.forename: June
authors.initials: J
authors.lastname: Hemsley
authors.affiliation: Marie Curie Palliative Care Research Unit, UCL Division of Psychiatry, London, UK.
authors.forename: Louise
authors.initials: L
authors.lastname: Jones
authors.affiliation: Louis Dundas Centre for Children's Palliative Care, Great Ormond Street Hospital, UCL Institute of Child Health, London, UK Department of Sociology, Anthropology and Criminal Justice, Rutgers University, Camden, NJ, USA bluebond@ucl.ac.uk.
authors.forename: Myra
authors.initials: M
authors.lastname: Bluebond-Langner
mesh_terms: D000293:Adolescent; D000328:Adult; D032722:Advance Care Planning; D035843:Biomedical Research / Q000458:organization & administration; D002648:Child; D002675:Child, Preschool; D003256:Community Participation; D005260:Female; D006801:Humans; D007223:Infant; D008297:Male; D008875:Middle Aged; D015999:Multivariate Analysis; D010166:Palliative Care; D010290:Parents / Q000523:psychology*; D018579:Patient Selection; D012107:Research Design / Q000592:standards*; D015983:Selection Bias; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: Palliative care; child; paediatrics; patient selection; research design; selection bias