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Addressing personal barriers to advance care planning: Qualitative investigation of a mindfulness-based intervention for adults with cancer and their family caregivers

Published online by Cambridge University Press:  08 June 2018

Ann H. Cottingham*
Affiliation:
Indiana University School of Medicine, Indianapolis, IN Regenstrief Institute, Inc., Indianapolis, IN
Kathleen Beck-Coon
Affiliation:
Indiana University School of Medicine, Indianapolis, IN Indiana University School of Nursing, Indianapolis, IN
Jennifer K. Bernat
Affiliation:
Indiana University School of Nursing, Indianapolis, IN
Paul R. Helft
Affiliation:
Indiana University School of Medicine, Indianapolis, IN Indiana University Melvin and Bren Simon Cancer Center, Indianapolis, IN Charles Warren Fairbanks Center for Medical Ethics, IU Health, Indianapolis, IN Research in Palliative and End of Life Communication and Training (RESPECT) Center, Indiana University-Purdue University Indianapolis, Indianapolis, IN
Karen Schmidt
Affiliation:
Indiana University School of Medicine, Indianapolis, IN
Cleveland G. Shields
Affiliation:
Purdue University, West Lafayette, IN
Alexia M. Torke
Affiliation:
Indiana University School of Medicine, Indianapolis, IN Charles Warren Fairbanks Center for Medical Ethics, IU Health, Indianapolis, IN Research in Palliative and End of Life Communication and Training (RESPECT) Center, Indiana University-Purdue University Indianapolis, Indianapolis, IN Indiana University Center for Aging Research, Regenstrief Institute, Inc., Indianapolis, IN Daniel F. Evans Center for Spiritual and Religious Values in Health Care, IU Health, Indianapolis, IN
Shelley A. Johns
Affiliation:
Indiana University School of Medicine, Indianapolis, IN Regenstrief Institute, Inc., Indianapolis, IN Charles Warren Fairbanks Center for Medical Ethics, IU Health, Indianapolis, IN Research in Palliative and End of Life Communication and Training (RESPECT) Center, Indiana University-Purdue University Indianapolis, Indianapolis, IN
*
Author for correspondence: Ann H. Cottingham, Regenstrief Institute, Inc., 1101 West Tenth Street RF-239, Indianapolis, IN 46202. E-mail: ancottin@iu.edu
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Abstract

Objective

Advance care planning (ACP) increases quality of life and satisfaction with care for those with cancer and their families, yet these important conversations often do not occur. Barriers include patients’ and families’ emotional responses to cancer, such as anxiety and sadness, which can lead to avoidance of discussing illness-related topics such as ACP. Interventions that address psychological barriers to ACP are needed. The purpose of this study was to explore the effects of a mindfulness intervention designed to cultivate patient and caregiver emotional and relational capacity to respond to the challenges of cancer with greater ease, potentially decreasing psychological barriers to ACP and enhancing ACP engagement.

Method

The Mindfully Optimizing Delivery of End-of-Life (MODEL) Care intervention provided 12 hours of experiential training to two cohorts of six to seven adults with advanced-stage cancer and their family caregivers (n = 13 dyads). Training included mindfulness practices, mindful communication skills development, and information about ACP. Patient and caregiver experiences of the MODEL Care program were assessed using semistructured interviews administered immediately postintervention and open-ended survey questions delivered immediately and at 4 weeks postintervention. Responses were analyzed using qualitative methods.

Result

Four salient themes were identified. Patients and caregivers reported the intervention (1) enhanced adaptive coping practices, (2) lowered emotional reactivity, (3) strengthened relationships, and (4) improved communication, including communication about their disease.

Significance of results

The MODEL Care intervention enhanced patient and caregiver capacity to respond to the emotional challenges that often accompany advanced cancer and decreased patient and caregiver psychological barriers to ACP.

Information

Type
Original Article
Copyright
Copyright © Cambridge University Press 2018 
Figure 0

Table 1. MODEL Care intervention summary

Figure 1

Table 2. Qualitative interview and open-ended survey questions

Figure 2

Table 3. Participant demographics

Figure 3

Table 4. Interview and survey themes