Föräldrars upplevda erfarenheter av att tillfrågas om medverkan i forskning för sitt prematura barns räkning

Research output: Contribution to journalArticle

Abstract

Clinical research, when children involved, may cause difficult ethical problems for both caregivers and parents. Informed consent has to be obtained from the parents and from the child depending on age and maturity. The concept of informed consent is complicated and depending on the ability of communication between the professionals and the
parents. The aim of the study was to illuminate parents lived experiences when being asked to volunteer
their new-born premature child to a clinical research study. Parents of fifteen children were interviewed concerning their experiences and a phenomenological
based analysis was carried out. Three themes were found:
experience of exposure, experience of insufficiency and experience of possibilities. The parents expired themselves being in a state of shock and their statements were characterised by the existing chaos. Despite this, the
parents experienced that they could do something good for
others in the future. Researchers have to be aware of the parents’ exposure, and attentive to their individual needs.

Details

Authors
Organisations
Research areas and keywords

Subject classification (UKÄ) – MANDATORY

  • Nursing

Keywords

  • clinical research, informed consent, neonatal intensive care, parents lived experiences, premature
Translated title of the contributionParents lived experiences from being asked to include their preterm baby in clinical research
Original languageSwedish
Pages (from-to)29-32
JournalVård i Norden
Volume25
Issue number77
Publication statusPublished - 2005
Publication categoryResearch
Peer-reviewedYes

Bibliographic note

The information about affiliations in this record was updated in December 2015. The record was previously connected to the following departments: Division of Nursing (Closed 2012) (013065000)