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.Aim: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).Design: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.Setting: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.Conclusion: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.

Specialist paediatric palliative care services: what are the benefits?

“…This is a well-recognised problem in palliative care research, due to clinical and ethical challenges, and brings into question the value of systematic reviews in this subject area 24. Specific methodological challenges exist around gatekeeping of participants by clinicians,25 which was described as a barrier to recruitment in one study 22. In surveys, families were found to be unreachable by phone or post, did not respond or were ineligible to participate due to language barriers 15 17 20 22.…”

Keeping all options open: Parents’ approaches to advance care planning

“…The invitation, recruitment and sampling methods have been described in detail elsewhere . Two groups were invited to participate: (i) parents whose child was currently receiving services from the palliative care team (Group A) and (ii) bereaved parents whose child had received care from the palliative care team and had died 6‐10 months previously (Group B).…”

A call for increased paediatric palliative care research: Identifying barriers

“…3 Indeed, even when participants are successfully recruited, the lack of detailed, standardised reporting of how recruitment was achieved hinders our ability to decipher the applicability of research to our own populations of interest.…”