By mail, each identified bereaved family member was sent an invitation package inviting their participation and study information. Recipients were asked to use a response option of their
choice (mail, telephone, email) to indicate whether or not they wished to participate or required additional information. Those who agreed were asked to provide their telephone contact information. If they did not feel they were the most informed about the decedent’s EOLC, suggestions for an alternate person to whom the invitation could be sent were solicited. Approximately three weeks following the initial mailing, a reminder was sent to Inhibitors,research,lifescience,medical those who had not yet responded. Ethical considerations Inhibitors,research,lifescience,medical for this population-based study necessitated the identification of potential participants and their initial contact to originate from the provincial Vital Statistics office as a means to ensure confidentiality
and privacy. Only bereaved family members who agreed to be further contacted were approached by the study team. Challenges and resolution strategies A number of challenges were encountered during the initial months of this project, the majority Inhibitors,research,lifescience,medical of which had the potential to exert a substantial impact on the overall response rate and subsequent number of completed surveys. Some of the challenges were amenable to change while others were not in the control of the study team. Indirect contact Several challenges were encountered with the ethics board requirement of a third party to be responsible for identifying and contacting potential participants. The research team had no knowledge of who
was invited Inhibitors,research,lifescience,medical to take part thereby maintaining confidentiality and privacy. Challenges with this process included Inhibitors,research,lifescience,medical unexpected delays in the distribution of study invitations due to third party workload and personnel changes, increased costs and the inability to estimate characteristics of non-respondents. However the major challenge was the necessity to place the onus on the bereaved family member to directly contact the study team themselves, which, for many, may have been perceived as an unnecessary burden adding to their grief. Given the increasing Carnitine dehydrogenase concerns for personal privacy and confidentiality, challenges associated with the inability to directly contact potential participants and working with a third party will continue. Maintaining a positive working relationship that respects each other’s time, constraints and budgetary needs are of primary importance in order to continue this line of research. Eligibility In order to examine care provided at the end of life it is important that eligible decedents are accurately identified. RGFP966 ic50 Inclusion of people who died suddenly and did not receive EOLC services has the potential to impact results.