Literature DB >> 15694216

Child and parent reactions to participation in clinical research.

Nancy Kassam-Adams1, Elana Newman.   

Abstract

BACKGROUND: Psychological and psychiatric research studies in medical settings often enroll children who are ill, injured, coping with pain or undergoing stressful medical procedures. Yet empirical evidence to date regarding the effects of research on these participants is scarce. This study assessed reactions of injured children and their parents to research participation and examined associations with demographic, injury and acute stress variables.
METHODS: Administered standard research reactions questionnaires to 203 injured children (5-17) and 200 parents participating in a study of acute posttraumatic stress.
RESULTS: Fifty-two percent of children and 74% of parents were glad they had participated; 77% of children and 90% of parents felt good about helping others. Self-reported distress from study participation was uncommon (5% of children and parents). Child age was associated with more positive appraisals of the research process and with greater trust in and information about elements of informed consent.
CONCLUSIONS: Participation in a research interview following traumatic injury had little risk of generating distress for children or parents. The most commonly reported positive aspect of research participation was feeling good about helping others. This study supports the feasibility of incorporating standardized assessment of participant reactions in clinical research protocols.

Entities:  

Mesh:

Year:  2005        PMID: 15694216     DOI: 10.1016/j.genhosppsych.2004.08.007

Source DB:  PubMed          Journal:  Gen Hosp Psychiatry        ISSN: 0163-8343            Impact factor:   3.238


  15 in total

1.  Is Participating in Psychological Research a Benefit, Burden, or Both for Medically Ill Youth and Their Caregivers?.

Authors:  Lori Wiener; Haven Battles; Sima Zadeh; Maryland Pao
Journal:  IRB       Date:  2015 Nov-Dec

2.  Conducting reproductive research during a new childhood cancer diagnosis: ethical considerations and impact on participants.

Authors:  Leena Nahata; Taylor L Morgan; Keagan G Lipak; Olivia E Clark; Nicholas D Yeager; Sarah H O'Brien; Stacy Whiteside; Anthony N Audino; Cynthia A Gerhardt; Gwendolyn P Quinn
Journal:  J Assist Reprod Genet       Date:  2019-08-01       Impact factor: 3.412

3.  Emergency department screening for risk for post-traumatic stress disorder among injured children.

Authors:  W L Ward-Begnoche; M E Aitken; R Liggin; S H Mullins; N Kassam-Adams; A Marks; F K Winston
Journal:  Inj Prev       Date:  2006-10       Impact factor: 2.399

4.  Perceptions of participating in family-centered fertility research among adolescent and young adult males newly diagnosed with cancer: A qualitative study.

Authors:  Leena Nahata; Taylor L Morgan; Keagan G Lipak; Olivia E Clark; Nicholas D Yeager; Sarah H O'Brien; Stacy Whiteside; Anthony Audino; Gwendolyn P Quinn; Cynthia A Gerhardt
Journal:  Pediatr Blood Cancer       Date:  2019-08-12       Impact factor: 3.167

5.  Adolescent distress in traumatic stress research: data from the National Survey of Adolescents-Replication.

Authors:  Kristyn Zajac; Kenneth J Ruggiero; Daniel W Smith; Benjamin E Saunders; Dean G Kilpatrick
Journal:  J Trauma Stress       Date:  2011-03-15

Review 6.  Ethical issues in mental health research: the case for community engagement.

Authors:  James M Dubois; Brendolyn Bailey-Burch; Dan Bustillos; Jean Campbell; Linda Cottler; Celia B Fisher; Whitney B Hadley; Jinger G Hoop; Laura Roberts; Erica K Salter; Joan E Sieber; Richard D Stevenson
Journal:  Curr Opin Psychiatry       Date:  2011-05       Impact factor: 4.741

7.  Reasons for and reservations about research participation in acutely injured adults.

Authors:  Elliane Irani; Therese S Richmond
Journal:  J Nurs Scholarsh       Date:  2015-01-19       Impact factor: 3.176

8.  Assessing trauma and related distress in refugee youth and their caregivers: should we be concerned about iatrogenic effects?

Authors:  M Claire Greene; Jeremy C Kane; Paul Bolton; Laura K Murray; Milton L Wainberg; Grace Yi; Amanda Sim; Eve Puffer; Abdulkadir Ismael; Brian J Hall
Journal:  Eur Child Adolesc Psychiatry       Date:  2020-09-03       Impact factor: 5.349

9.  Emotional risks to respondents in survey research.

Authors:  Susan M Labott; Timothy P Johnson; Michael Fendrich; Norah C Feeny
Journal:  J Empir Res Hum Res Ethics       Date:  2013-10       Impact factor: 1.742

10.  Perceived Risks and Benefits in IPV and HIV Research: Listening to the Voices of HIV-Positive African American Women.

Authors:  Nicole M Overstreet; Mukadder Okuyan; Celia B Fisher
Journal:  J Empir Res Hum Res Ethics       Date:  2018-09-05       Impact factor: 1.742

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