SynthesisPalliative medicine2017
The under reporting of recruitment strategies in research with children with life-threatening illnesses: A systematic review.
Synthesis in Palliative medicine, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 27 papers, 3 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
27 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- Enhancing validity, reliability and participation in self-reported health outcome measurement for children and young people: a systematic review of recall period, response scale format, and administration modality.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2021Pooled it
- Effective and resource-efficient strategies for recruiting families in physical activity, sedentary behavior, nutrition, and obesity prevention research: A systematic review with expert opinion.Obesity reviews : an official journal of the International Association for the Study of Obesity · 2021Pooled it
- Pooled it
- Factors That Impact Hospital-Specific Enrollment Rates for a Neonatal Clinical Trial: An Analysis of the HEAL Study.Ethics & human research · 2023Trial
- Article
- Recruitment and retention challenges and strategies in randomized controlled trials of psychosocial interventions for children with cancer and their parents: a collective case study.European journal of pediatrics · 2023Article
- Participant Recruitment Issues in Child and Adolescent Psychiatry Clinical Trials with a Focus on Prevention Programs: A Meta-Analytic Review of the Literature.Journal of clinical medicine · 2023Review
- Research participation in palliative medicine-benefits and barriers for patients and families: rapid review and thematic synthesis.BMJ supportive & palliative care · 2023Review
- Research barriers in children and young people with life-limiting conditions: a survey.BMJ supportive & palliative care · 2022Article
- Best practices for recruitment of adolescents for biobanking and precision health research: a retrospective analysis comparing juvenile idiopathic arthritis cases with healthy controls.Pediatric rheumatology online journal · 2021Article
- Recruitment principles and strategies for supportive care research in pediatric oncology.BMC medical research methodology · 2021Article
- "Include me if you can"-reasons for low enrollment of pediatric patients in a psychopharmacological trial.Trials · 2021Article
- Facebook Recruitment for Children with Advanced Cancer and Their Parents: Lessons from a Web-based Pediatric Palliative Intervention Study.Progress in palliative care · 2021Article
- Recruitment Issues in Emerging Adult Populations: Focus on Adult Congenital Heart Disease.Nursing reports (Pavia, Italy) · 2020Article
- Article
- Factors affecting adolescents' participation in randomized controlled trials evaluating the effectiveness of healthcare interventions: the case of the STEPSTONES project.BMC medical research methodology · 2020Article
- Challenges and Priorities for Pediatric Palliative Care Research in the U.S. and Similar Practice Settings: Report From a Pediatric Palliative Care Research Network Workshop.Journal of pain and symptom management · 2019Article
- Parents' Wishes for What They Had or Had Not Done and Their Coping After Their Infant's or Child's Neonatal Intensive Care Unit/Pediatric Intensive Care Unit/Emergency Department Death.Journal of hospice and palliative nursing : JHPN : the official journal of the Hospice and Palliative Nurses Association · 2019Article
- Black, White, and Hispanic Children's Health and Function 2-13 Months After Sibling Intensive Care Unit Death.The Journal of pediatrics · 2019Article
- Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors.
Funding
Abstract
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 SOURCES: MEDLINE, 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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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.