Shared Perspectives of Patients With Advanced Cancer and Their Informal Caregivers on Essential Aspects of Health Care: A Qualitative Study

Abstract

Objective: The aim of this study is to explore the essential aspects of health care according to patients with advanced cancer and their informal caregivers by using a dyadic approach. Methods: Seven focus groups and 7 in-depth semi-structured interviews were conducted. Patients with advanced cancer and informal caregivers were recruited between January 2017 and June 2017 in 6 Dutch hospitals. All interviews were audiotaped, transcribed verbatim, and open coded using a thematic analysis approach. For this analysis Atlas.ti was used. Results: There was congruence between the aspects mentioned by patients and their informal caregiver. Two essential aspects of quality of care arose: “relation” and “organization of care.” Regarding relation, patients and informal caregivers found it essential that health care professionals were personally engaged and provided support and compassion. Regarding organization of care, patients and informal caregivers expressed the importance of supportive care being offered multiple times during the disease trajectory, continuity of care, and well-organized logistics tailored to their needs. Conclusion: This study generates awareness among health care professionals that patients with advanced cancer and their relatives have similar perspectives on essential aspects of care and may increase anticipation to meet health care preferences to optimize care.