• Briony F Hudson, Linda Jm Oostendorp, Bridget Candy, Victoria Vickerstaff, Louise Jones, Monica Lakhanpaul, Myra Bluebond-Langner, and Paddy Stone.
• 1 Louis Dundas Centre for Children's Palliative Care, UCL Institute of Child Health, London, UK.
• Palliat Med. 2017 May 1; 31 (5): 419436419-436.

BackgroundResearchers report difficulties in conducting research with children and young people with life-limiting conditions or life-threatening illnesses and their families. Recruitment is challenged by barriers including ethical, logistical and clinical considerations.AimTo explore how children and young people (aged 0-25 years) with life-limiting conditions or life-threatening illnesses and their families were identified, invited and consented to research published in the last 5 years.DesignSystematic review.Data SourcesMEDLINE, PsycINFO, Web of Science, Sciences Citation Index and SCOPUS were searched for original English language research published between 2009 and 2014, recruiting children and young people with life-limiting conditions or life-threatening illness and their families.ResultsA total of 215 studies - 152 qualitative, 54 quantitative and 9 mixed methods - were included. Limited recruitment information but a range of strategies and difficulties were provided. The proportion of eligible participants from those screened could not be calculated in 80% of studies. Recruitment rates could not be calculated in 77%. A total of 31% of studies recruited less than 50% of eligible participants. Reasons given for non-invitation included missing clinical or contact data, or clinician judgements of participant unsuitability. Reasons for non-participation included lack of interest and participants' perceptions of potential burdens.ConclusionAll stages of recruitment were under reported. Transparency in reporting of participant identification, invitation and consent is needed to enable researchers to understand research implications, bias risk and to whom results apply. Research is needed to explore why consenting participants decide to take part or not and their experiences of research recruitment.

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