Literature DB >> 17538126

Conducting end-of-life studies in pediatric oncology.

Pamela S Hinds1, Elizabeth A Burghen, Michele Pritchard.   

Abstract

Improving our ability to prevent or diminish suffering in dying children and adolescents and their families is dependent on the completion of high-quality pediatric end-of-life studies. The purpose of this article is to provide useful evidence-based strategies that have been used to implement and complete clinically useful pediatric end-of-life studies in oncology. The article describes specific peer-review and methodological challenges and links those to evidence-based solutions. The challenges and solutions described in this article are from eight end-of-life studies involving pediatric oncology patients. It is hoped that the solutions described here will benefit others in their efforts to implement pediatric end-of-life studies so that clinically useful findings will result and will improve the care of dying children and adolescents.

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Year:  2007        PMID: 17538126     DOI: 10.1177/0193945906295533

Source DB:  PubMed          Journal:  West J Nurs Res        ISSN: 0193-9459            Impact factor:   1.967


  23 in total

1.  An exploratory survey of end-of-life attitudes, beliefs, and experiences of adolescents with HIV/AIDS and their families.

Authors:  Patricia A Garvie; Jianping He; Jichuan Wang; Lawrence J D'Angelo; Maureen E Lyon
Journal:  J Pain Symptom Manage       Date:  2012-07-07       Impact factor: 3.612

2.  Feasibility of Conducting a Palliative Care Randomized Controlled Trial in Children With Advanced Cancer: Assessment of the PediQUEST Study.

Authors:  Veronica Dussel; Liliana Orellana; Natalie Soto; Kun Chen; Christina Ullrich; Tammy I Kang; Jeffrey R Geyer; Chris Feudtner; Joanne Wolfe
Journal:  J Pain Symptom Manage       Date:  2015-01-30       Impact factor: 3.612

3.  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

4.  Evaluation of the burdens and benefits of participation in research by parents of children with life-limiting illnesses.

Authors:  Audrey Hopper; Stacey Crane
Journal:  Nurse Res       Date:  2019-07-18

5.  Compassion and vigilance: investigators' strategies to manage ethical concerns in palliative and end-of-life research.

Authors:  Susan E Hickman; Juliana C Cartwright; Christine A Nelson; Kathleen Knafl
Journal:  J Palliat Med       Date:  2012-06-25       Impact factor: 2.947

6.  Participation in Online Research Examining End-of-Life Experiences: Is It Beneficial, Burdensome, or Both for Parents Bereaved by Childhood Cancer?

Authors:  Julia Tager; Haven Battles; Sima Zadeh Bedoya; Cynthia A Gerhardt; Tammi Young-Saleme; Lori Wiener
Journal:  J Pediatr Oncol Nurs       Date:  2019 May/Jun       Impact factor: 1.636

7.  Acceptability of Family-Centered Advanced Care Planning for Adolescents With HIV.

Authors:  Ronald H Dallas; Allison Kimmel; Megan L Wilkins; Sohail Rana; Ana Garcia; Yao I Cheng; Jichuan Wang; Maureen E Lyon
Journal:  Pediatrics       Date:  2016-11-01       Impact factor: 7.124

8.  The Effect of FAmily-CEntered (FACE®) Pediatric Advanced Care Planning Intervention on Family Anxiety: A Randomized Controlled Clinical Trial for Adolescents With HIV and Their Families.

Authors:  Christopher J Lin; Yao I Cheng; Patricia A Garvie; Lawrence J D'Angelo; Jichuan Wang; Maureen E Lyon
Journal:  J Fam Nurs       Date:  2020-11       Impact factor: 3.818

Review 9.  Designing and implementing a longitudinal study of children with neurological, genetic or metabolic conditions: charting the territory.

Authors:  Harold Siden; Rose Steele; Rollin Brant; Susan Cadell; Betty Davies; Lynn Straatman; Kimberley Widger; Gail S Andrews
Journal:  BMC Pediatr       Date:  2010-09-20       Impact factor: 2.125

10.  Medical record documentation and symptom management at the end of life in the NICU.

Authors:  Christine A Fortney; Deborah K Steward
Journal:  Adv Neonatal Care       Date:  2015-02       Impact factor: 1.968

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