TY - JOUR
T1 - “Who can I ring? Where can I go?” Living with advanced cancer whilst navigating the health system
T2 - a qualitative study
AU - Newton, Jade C.
AU - O’Connor, Moira
AU - Saunders, Christobel
AU - Ali, Sayed
AU - Nowak, Anna K.
AU - Halkett, Georgia K.B.
PY - 2022/8
Y1 - 2022/8
N2 - Background: People with advanced cancer often experience greater physical and psychosocial morbidity compared to those with early disease. Limited research has focused on their experiences within the Australian health system. The aim of this study was to explore the lived experiences of adults receiving care for advanced cancer. Methods: A qualitative design with a descriptive phenomenological approach was used to explore the lived experiences of people with advanced cancer following their diagnosis. Twenty-three people living with an advanced solid malignancy receiving care were referred by their oncologists to take part in an interview conducted at their home, the hospital, or over the phone. Results: Three key themes emerged relating to participants’ experiences of living with advanced cancer: (1) living with a life-limiting diagnosis and uncertainty, (2) living with symptom burden and side effects, and (3) living within the health system, with two subthemes, the patient-clinician relationship, and care coordination. Participant relationships with their health professionals were particularly important and had a defining impact on whether patient experiences living with cancer were positive or negative. Conclusion: People with advanced cancer experienced broad variation in their experiences navigating the health system, and their relationships with clinicians and other health professionals were important factors affecting their perceptions of their experiences. Attention to the coordination of care for people with advanced cancer is necessary to improve their experiences and improve symptom control and the management of their psychosocial burden.
AB - Background: People with advanced cancer often experience greater physical and psychosocial morbidity compared to those with early disease. Limited research has focused on their experiences within the Australian health system. The aim of this study was to explore the lived experiences of adults receiving care for advanced cancer. Methods: A qualitative design with a descriptive phenomenological approach was used to explore the lived experiences of people with advanced cancer following their diagnosis. Twenty-three people living with an advanced solid malignancy receiving care were referred by their oncologists to take part in an interview conducted at their home, the hospital, or over the phone. Results: Three key themes emerged relating to participants’ experiences of living with advanced cancer: (1) living with a life-limiting diagnosis and uncertainty, (2) living with symptom burden and side effects, and (3) living within the health system, with two subthemes, the patient-clinician relationship, and care coordination. Participant relationships with their health professionals were particularly important and had a defining impact on whether patient experiences living with cancer were positive or negative. Conclusion: People with advanced cancer experienced broad variation in their experiences navigating the health system, and their relationships with clinicians and other health professionals were important factors affecting their perceptions of their experiences. Attention to the coordination of care for people with advanced cancer is necessary to improve their experiences and improve symptom control and the management of their psychosocial burden.
KW - Continuity of patient care
KW - Multidisciplinary communication
KW - Neoplasms, Patient-centred care
KW - Qualitative research
UR - http://www.scopus.com/inward/record.url?scp=85129795414&partnerID=8YFLogxK
U2 - 10.1007/s00520-022-07107-1
DO - 10.1007/s00520-022-07107-1
M3 - Article
C2 - 35536328
AN - SCOPUS:85129795414
SN - 0941-4355
VL - 30
SP - 6817
EP - 6826
JO - Supportive Care in Cancer
JF - Supportive Care in Cancer
IS - 8
ER -