Methodological Reflections on the Recruitment of Adult Child-Parent Dyads for End-of-Life Research in Germany: Experiences From the Dy@EoL Study.

Abstract

Although high-quality research with patients and family members is needed to improve palliative care, difficulties in recruitment are often reported. The present article analyzes the authors' experiences in recruiting participants of two types of dyads for the study "Dy@EoL-Interaction at the end of life in dyads of parents and adult children". Recruitment challenges and factors found to improve recruitment are examined. Between February 2018 and November 2019, the research team cooperated with diverse inpatient and ambulatory palliative and hospice care providers to recruit both dyads. Cooperation strategies and adaptations were protocolled. Data on (non-)participation were recorded and analyzed using descriptive statistics. The recruitment rate was 34.6% (dyad 1, terminally ill adult children with parents: 36.4%; dyad 2, terminally ill parents with adult children: 33.9%). In total, 82.2% of participants were recruited from inpatient settings. The research team has applied various strategies, such as public outreach activities and the extension of recruitment partners. The study protocol was adapted at an early stage to include single participants. Of all patients, 47.7% participated without their dyad partner. The main reason to exclude their family member was the patients' wish to protect them from extraburden. The recruitment was more successful in inpatient than in ambulatory settings. The extension of recruitment partners was beneficial to recruit participants from ambulatory contexts. The inclusion of single participants was conducive as a great number of patients participated without their dyad partner. Sharing the obtained experiences can be helpful for future research planning.