Exploring families' experiences of an organ donation request after brain death

Abstract

This qualitative research study with a content analysis approach aimed to explore families' experiences of an organ donation request after brain death. Data were collected through 38 unstructured and in-depth interviews with 14 consenting families and 12 who declined to donate organs. A purposeful sampling process began in October 2009 and ended in October 2010. Data analysis reached 10 categories and two major themes were listed as: (1) serenity in eternal freedom; and (2) resentful grief. The central themes were peace and honor versus doubt and regret. The findings indicated that the families faced with an organ donation request of a brain-dead loved one experienced a lasting effect long after the patient's demise regardless of their decision to donate or refusal to donate. In conclusion, this study highlights the importance of family support and follow-up in an efficient healthcare system aimed at developing trust with the families and providing comfort during and after the final decision.

Satisfaction With the Organ Donation Process of Brain Dead Donors' Families In Korea

“…In this study, families after organ donation manifested the emotions of missing their loved ones, pride, grief, family love, and guilt, which is similar to the findings in another study [17,18]. Moreover, religious practice and spending time with family and friends were found to be helpful for relieving psychological stress after the organ donation.…”

Donar, un cambio de vida: comprender la experiencia de familiares que aceptaron la donación de órganos

“…La muerte del ser querido es siempre una muerte inesperada, provocada por causas médicas o trauma, generando shock e incredulidad [8][9][10] , y es este dolor y sufrimiento tan profundo una de las razones descritas por las familias para rechazar la donación 10,11 . El momento de la despedida, es importante para el adiós y la expresión de sentimientos 12 , momento que debe permitírsele a la familia.…”

“…Respecto de las creencias religiosas, en nuestro estudio la fe y la religión son coadyuvantes a la decisión, sin embargo, también es una de las causas descrita por familias para rechazar la donación [10][11][12][13]17,18 . El impacto de la decisión genera consecuencias familiares [2][3][4][5][6] , lo cual corroboramos también en los relatos, una experiencia positiva con la donación provoca un cambio favorable en toda la familia 15,19,20 , convirtiéndose en agentes activos y líderes de opinión.…”

“…Comprender esta vivencia permitirá encontrar elementos significativos para brindar un cuidado humanizado y comprensivo, acorde a las necesidades que viven durante este proceso 9,11,25 . Este estudio refuerza una entrega de información sistemática y continua 19,26,27 .…”

Avaliação das causas de recusa familiar a doação de órgãos e tecidos

“…(8)(9)(10)(11)(12)(13) The request for organ donation has a significant impact on the families, with effects that last long after the death of the loved one, regardless the decision made (to donate or not to), as the process as a whole is a complex and life-changing experience for them. (14) The concept of organ recovery and donation should be extended to the care of the family, so as to understand what they are going through and to minimize their suffering, regardless the answer to the donation request. (12) The objective of this study was to identify and analyze the causes for the family refusal to the re- …”