Coping with an Advanced Stage Lung Cancer Diagnosis: Patient, Caregiver, and Provider Perspectives on the Role of the Health Care System

K M Islam; Samuel T Opoku; Bettye A Apenteng; Ann Fetrick; June Ryan; M Copur; Addison Tolentino; Irfan Vaziri; Apar K Ganti

doi:10.1007/s13187-015-0840-1

Coping with an Advanced Stage Lung Cancer Diagnosis: Patient, Caregiver, and Provider Perspectives on the Role of the Health Care System

J Cancer Educ. 2016 Sep;31(3):554-8. doi: 10.1007/s13187-015-0840-1.

Authors

K M Islam¹, Samuel T Opoku², Bettye A Apenteng², Ann Fetrick³, June Ryan⁴, M Copur⁵, Addison Tolentino⁶, Irfan Vaziri⁷, Apar K Ganti^{8

9}

Affiliations

¹ Department of Epidemiology, College of Public Health (CoPH), University of Nebraska Medical Center (UNMC), Omaha, NE, USA. kmislam@unmc.edu.
² Department of Health Policy and Management, Jiann-Ping Hsu College of Public Health, Georgia Southern University, Statesboro, GA, USA.
³ Department of Health Services Research, Administration, and Policy, UNMC, CoPH, Omaha, NE, USA.
⁴ Nebraska Cancer Coalition, Lincoln, NE, USA.
⁵ Saint Francis Cancer Treatment Center of Grand Island, Grand Island, NE, USA.
⁶ Avera Cancer Institute of Sioux Falls, Sioux Falls, SD, USA.
⁷ Callahan Cancer Center of North Platte, North Platte, NE, USA.
⁸ Veterans Healthcare Administration, Nebraska-Western Iowa Health Care System, Omaha, NE, USA.
⁹ Division of Oncology and Hematology of Omaha, UNMC, Omaha, NE, USA.

PMID: 25900672
DOI: 10.1007/s13187-015-0840-1

Abstract

Although lung cancer is the leading cause of cancer death in the USA, there have been few studies on patient-centered advanced lung cancer treatment practices. As part of a larger research study on how to use a patient-inclusive approach in late-stage lung cancer treatment, this present study describes patient, caregiver, and provider perspectives on the role of the health care system in helping patients cope with an advanced stage lung cancer diagnosis. Four focus group sessions were conducted with six to eleven participants per group for a total of 36 participants. Two focus groups were held with patients and family members/caregivers and two with physicians and nurses. A major theme that emerged concerned coping with an advanced lung cancer diagnosis, which is the subject of this paper. The patients, caregivers, and providers spoke passionately about interactions with the health care system and volunteered examples of supportive and non-supportive relationships between patients and clinicians. They advocated for better patient-provider communication practices as well as the expanded use of patient navigation and new patient orientation programs. This study contributes additional knowledge by including the perspectives of caregivers and providers who live and work closely with patients with advanced lung cancer. The findings can inform the development of comprehensive patient-centered care plans for patients living with an advanced lung cancer diagnosis.

Keywords: Advanced stage lung cancer; Caregivers; Coping with cancer; Patient-centered care; Providers; Stage IV lung cancer.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Adaptation, Psychological
Caregivers / psychology*
Communication
Decision Making*
Delivery of Health Care / organization & administration*
Female
Focus Groups
Health Personnel / psychology*
Humans
Lung Neoplasms / diagnosis*
Lung Neoplasms / psychology*
Lung Neoplasms / therapy
Male
Patient Outcome Assessment
Patient-Centered Care*
Physician-Patient Relations
Surveys and Questionnaires