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

• 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.

Subject headings

MEDICIN OCH HÄLSOVETENSKAP  -- Hälsovetenskap -- Omvårdnad (hsv//swe)

MEDICAL AND HEALTH SCIENCES  -- Health Sciences -- Nursing (hsv//eng)

Keyword

clinical research

informed consent

neonatal intensive care

parents lived experiences

premature

Publication and Content Type

art (subject category)

ref (subject category)