Potential inequities in availability of care from breast care nurses: a qualitative study reporting the experiences and perspectives of women with metastatic breast cancer in Australia

Abstract

Abstract Background International consensus guidelines recommend patients with metastatic breast cancer have access to a nurse experienced in the treatment of metastatic breast cancer. This study aimed to explore women’s experiences of supportive care from breast care nurses, including their perspectives on the role breast care nurses currently play in providing support to people with metastatic breast cancer. Methods Multiple semi-structured qualitative interviews with 38 women with metastatic breast cancer in Australia. Data relating to nursing care were extracted and analysed using thematic analysis. Results Three themes were identified: (1) feeling that supportive care needs are unrecognised; (2) confusion about role and relevance of breast care nurse to those with metastatic breast cancer; (3) care from metastatic breast care nurses (when available) was appreciated, valued and beneficial. Participants’ experiences differed in relation to ease of access to, amount of contact with, and level of care provided by breast care nurses. Contact and care ranged from little or none to comprehensive and ongoing. A key system-level challenge was that the diversity of diagnostic and treatment pathways for metastatic breast cancer meant that no systematic means existed to support routine or regular contact between breast care nurses and participants. Participants who did report having access to a specialised metastatic breast care nurse placed considerable value on the care received. For these participants, care from the breast care nurse extended and complemented care from the oncologist and included much needed psychosocial and practical support. For these participants, the breast care nurse assumed the role of key contact and care coordinator and was valued for their availability, accessibility and responsiveness. High levels of trust developed between patient and breast care nurse. Conclusions Findings indicate that there may be gaps and inequities in supportive care in Australia for people diagnosed with metastatic breast cancer, a finding that supports earlier reports of limited access to breast care nurses for people with metastatic breast cancer in Australia. The specialised metastatic breast care nurse could potentially play a key role in addressing the high level of unmet supportive care needs and improve continuity of care for these patients.