Background The EAPC consensus concept defines Advance Care Planning (ACP) as enabling persons to identify goals and preferences for future treatments and care, and to discuss, record and review these. However, this concept is defined by professionals. It is unknown how patients and relatives conceptualize ACP, however, this would be useful for (online) information provision on ACP.
Aims To explore what patients and relatives consider important in ACP and how they would search for ACP information on the internet.
Methods To address our aims, we interviewed 9 patients with chronic diseases and 7 relatives. We used constant comparative analyses to categorize their key elements of ACP.
Results Patients and relatives would use search terms such as ‘ACP’, ‘care/treatment plan’, ‘disease trajectory’, ‘advance directive’ and patient associations. They would appreciate information on ACP and its importance; how to adapt ACP to individual needs; values and quality of life; diseases; treatment and care options; and communication of preferences. Furthermore, interviewees mentioned additional needs, such as how to get support, explanation of persons involved in ACP, encouragement to think about ACP, information for relatives, and peer support.
Conclusion(s) Key elements of ACP according to patients and relatives are in line with the EAPC consensus concept according to professionals. However, patients and relatives also mentioned additional elements, indicating their concept of ACP may be broader. Including the elements and search terms in ACP information may enhance online findability and may help meeting information needs.
Funding The Netherlands Organisation for Health Research and Development (ZonMw).
Statistics from Altmetric.com
If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.