Literature DB >> 19959821

Research with vulnerable families caring for children with life-limiting conditions.

Michael M Stevens1, Bruce A Lord, Marie-Thérèse Proctor, Sue Nagy, Elizabeth O'Riordan.   

Abstract

Methodological challenges associated with sensitive research, such as research with vulnerable families, have been well described, but there are few examples of how such challenges have been addressed in specific projects. To help address this gap, we describe how we designed and conducted a qualitative study of 91 members of 29 families caring for children or young people with life-limiting conditions. Although some issues associated with researching sensitive topics were anticipated, others were encountered that were not expected. We discuss insights gained from this study in relation to factors that influence effectiveness of recruitment, the quality of data collection, and the safety of participants and researchers.

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Year:  2009        PMID: 19959821     DOI: 10.1177/1049732309356097

Source DB:  PubMed          Journal:  Qual Health Res        ISSN: 1049-7323


  6 in total

1.  The Benefits and Burdens of Pediatric Palliative Care and End-of-Life Research: A Systematic Review.

Authors:  Meaghann S Weaver; Kim Mooney-Doyle; Katherine Patterson Kelly; Kathleen Montgomery; Amy R Newman; Christine A Fortney; Cynthia J Bell; Jessica L Spruit; Melissa Kurtz Uveges; Lori Wiener; Cynthia M Schmidt; Vanessa N Madrigal; Pamela S Hinds
Journal:  J Palliat Med       Date:  2019-03-05       Impact factor: 2.947

2.  Facebook advertisements recruit parents of children with cancer for an online survey of web-based research preferences.

Authors:  Terrah Foster Akard; Sarah Wray; Mary Jo Gilmer
Journal:  Cancer Nurs       Date:  2015 Mar-Apr       Impact factor: 2.592

3.  Inviting parents to take part in paediatric palliative care research: a mixed-methods examination of selection bias.

Authors:  Joanna C Crocker; Emma Beecham; Paula Kelly; Andrew P Dinsdale; June Hemsley; Louise Jones; Myra Bluebond-Langner
Journal:  Palliat Med       Date:  2014-12-17       Impact factor: 4.762

Review 4.  The under reporting of recruitment strategies in research with children with life-threatening illnesses: A systematic review.

Authors:  Briony F Hudson; Linda Jm Oostendorp; Bridget Candy; Victoria Vickerstaff; Louise Jones; Monica Lakhanpaul; Myra Bluebond-Langner; Paddy Stone
Journal:  Palliat Med       Date:  2016-09-08       Impact factor: 4.762

5.  Factors affecting recruitment and participation of bereaved parents and siblings in grief research.

Authors:  Terrah Foster Akard; Mary Jo Gilmer; Katy Miller; Amii Corbisiero Steele; Kelly Hancock; Maru Barrera; Bruce Compas; Betty Davies; Mary S Dietrich; Diane L Fairclough; Nancy S Hogan; Kathryn Vannatta; Cynthia A Gerhardt
Journal:  Prog Palliat Care       Date:  2014-04

6.  My child's legacy: a mixed methods study of bereaved parents and providers' opinions about collaboration with NICU teams in quality improvement initiatives.

Authors:  Claude Julie Bourque; Sonia Dahan; Ginette Mantha; Martin Reichherzer; Annie Janvier
Journal:  BMJ Open       Date:  2020-09-06       Impact factor: 2.692

  6 in total

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