Monica Fliedner1,2, Sofia Zambrano1, Jos Mga Schols2,3, Marie Bakitas4, Christa Lohrmann5, Ruud Jg Halfens2, Steffen Eychmüller1. 1. 1 DOLS, University Center for Palliative Care, University Hospital Inselspital Bern, Bern, Switzerland. 2. 2 Department of Health Services Research, School CAPHRI, Care and Public Health Research Institute, Maastricht University, Maastricht, The Netherlands. 3. 3 Department of Family Medicine, School CAPHRI, Care and Public Health Research Institute, Maastricht University, Maastricht, The Netherlands. 4. 4 School of Nursing, The University of Alabama at Birmingham, Birmingham, AL, USA. 5. 5 Institute of Nursing Science, University of Graz, Graz, Austria.
Abstract
BACKGROUND: Intervention trials confirm that patients with advanced cancer receiving early palliative care experience a better quality of life and show improved knowledge about and use of palliative care services. To involve patients in future health-care decisions, health professionals should understand patients' perspectives. However, little is known about how patients' experience such interventions. AIM: To explore advanced cancer patients' experiences with astructured early palliative care intervention, its acceptability and impact on the patients' life including influencing factors. DESIGN: Qualitative content analysis of in-depth, semi-structured interviews. SETTING/PARTICIPANTS: Patients with various advanced cancer diagnoses were enrolled in a multicenter randomized controlled trial (NCT01983956), which investigated the impact of "Symptoms, End-of-life decisions, Network, Support," a structured early palliative care intervention, on distress. Of these, 20 patients who underwent the intervention participated in this study. RESULTS: Participants received the intervention well and gained a better understanding of their personal situation. Patients reported that the intervention can feel "confronting" but with the right timing it can be confirming and facilitate family conversations. Patients' personal background and the intervention timing within their personal disease trajectory influenced their emotional and cognitive experiences; it also impacted their understanding of palliative care and triggered actions toward future care planning. CONCLUSION: Early palliative care interventions like "Symptoms, End-of-life decisions, Network, Support" may provoke emotions and feel "confrontational" often because this is the first time when issues about one's end of life are openly discussed; yet, advanced cancer patients found it beneficial and felt it should be incorporated into routine care.
RCT Entities:
BACKGROUND: Intervention trials confirm that patients with advanced cancer receiving early palliative care experience a better quality of life and show improved knowledge about and use of palliative care services. To involve patients in future health-care decisions, health professionals should understand patients' perspectives. However, little is known about how patients' experience such interventions. AIM: To explore advanced cancerpatients' experiences with a structured early palliative care intervention, its acceptability and impact on the patients' life including influencing factors. DESIGN: Qualitative content analysis of in-depth, semi-structured interviews. SETTING/PARTICIPANTS: Patients with various advanced cancer diagnoses were enrolled in a multicenter randomized controlled trial (NCT01983956), which investigated the impact of "Symptoms, End-of-life decisions, Network, Support," a structured early palliative care intervention, on distress. Of these, 20 patients who underwent the intervention participated in this study. RESULTS:Participants received the intervention well and gained a better understanding of their personal situation. Patients reported that the intervention can feel "confronting" but with the right timing it can be confirming and facilitate family conversations. Patients' personal background and the intervention timing within their personal disease trajectory influenced their emotional and cognitive experiences; it also impacted their understanding of palliative care and triggered actions toward future care planning. CONCLUSION: Early palliative care interventions like "Symptoms, End-of-life decisions, Network, Support" may provoke emotions and feel "confrontational" often because this is the first time when issues about one's end of life are openly discussed; yet, advanced cancerpatients found it beneficial and felt it should be incorporated into routine care.
Entities:
Keywords:
(Early) palliative care; advance care planning; neoplasms; qualitative research