The value of qualitative surveys from the experience of a nationwide study of bereaved caregivers
S. C. Zambrano1, K. Loeffel2, S. Eychmüller1 (1Bern ; 2Freiburg)
In palliative care (PC), qualitative studies (QS) have deepened the understanding of end of life experiences. Due to their in-depth focus, QS have small samples and can be time intensive, requiring high participant and researcher involvement. In contrast, qualitative survey approaches (QSA) possess the richness of qualitative data yet allow access to larger samples.
The benefits and difficulties of employing a QSA within PC remain unexplored. As part of a nationwide study to understand bereaved family caregivers’ needs, we recorded challenges and acceptability aspects of using a QSA.
We developed and piloted the anonymous survey with PC volunteers. We adhered to strict ethical considerations and sought support from clinical and non-clinical services to facilitate recruitment. With the postal survey, participants received invitation letters and contact details of the researchers in case of distress.
Ethical approval was obtained without difficulty. Some services acted as gatekeepers. The 35 services that supported the study forwarded 1239 surveys, of which 373 were returned (30% response rate). The time window for responses given to participants hindered participation. Participants had an average age of 63 years, and were predominantly women who had cared for a spouse or a parent. Participants sent different types of identifying information raising at times ethical questions for the researchers. Less than 5% sought direct contact. Responses were often comprehensive with attachments providing longer responses. For participants and researchers, involvement was high.
QSA are a promising alternative, as they allow bereaved caregivers to express their individual experience in a meaningful way that closed-ended surveys do not allow for. Feedback was mostly positive. We will expand on all challenging aspects as well as those that led to the study’s success across all research stages so that QSA can be used more widely in PC research