Participation in research: informed consent, motivation and influence.

OBJECTIVE: To investigate the process and quality of informed consent, motivation and influence in parents who were invited to enroll their baby in a research project. METHODOLOGY: A mixed quantitative/qualitative questionnaire was sent to a cohort invited to participate in a physiological research project on sudden infant death syndrome (SIDS) at the Dunedin Public Hospital, Dunedin, New Zealand. Separate questionnaires were used for parents who participated (94) and those who declined to participate (103). Response rates were 69% and 47%, respectively. RESULTS: All consenting parents felt they understood the purpose and procedure of the study. The majority (90%) thought the information about the study was very good; 6.5% felt more detail was required. Eighty-five per cent found the verbal explanation the most useful source of information. All participated for altruistic reasons such as to aid SIDS research. Although 27% had concerns about safety of the tests, after the tests all responders felt happy with the safety of the tests. Inconvenience was the main reason (53%) for declining to participate. Twenty-eight per cent of declining parents were concerned about the safety of the tests. CONCLUSION: Of those who responded to the questionnaire, the process for obtaining informed consent in the SIDS studies was satisfactory. Parents' motives for participating were mostly altruistic. The role of recall bias and selection bias may make the implications of this study unclear.

The introduction and auditing of a formal do not resuscitate policy.

AIMS: To introduce, to assess the use of and the staff understanding of a do not resuscitate policy. METHODS: A policy was developed with legal, medical, nursing and ethical input. Two distinct methods for a do not resuscitate order were allowed. The first method is where the patient requests a do not resuscitate order. The second is the medically indicated do not resuscitate order. The policy was trialed on two floors at Dunedin Hospital and an audit performed. Information was collected on patients receiving do not resuscitate orders. The notes of all patients dying on these floors were reviewed. A questionnaire was sent to clinical staff working on the trial floors which included questions on their understanding of issues related to do not resuscitate orders. RESULTS: 86% of deaths had a do not resuscitate order, 26% in accordance with the formal policy. Thirty percent of the time there was no record of a discussion of the do not resuscitate order with the patient or their family. Problems identified by staff included difficulty with raising and discussing these orders with patients and their families. Staff misunderstanding of consent and responsibility for treatment decisions for mentally competent and incompetent patients was common. CONCLUSIONS: There is a need for further staff education and discussion of the issues surrounding do not resuscitate orders. Discussion with patients and their families could be improved.