Patient and Caregiver Experiences Living with Advanced Colorectal Cancer & Receiving Early Palliative Care in Alberta
Date
2020-07-28
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Abstract
Background: Palliative care is patient-centred care that improves the quality of life of patients and families facing challenges associated with life-threatening illness. In Alberta, most people who received palliative care received it late, impacting their quality of life. An early palliative care pathway that incorporates patient and caregiver experiences is needed to ensure that priorities of patients living with advanced cancer care are at the forefront of quality care. Overall aim: This study aims to understand patient and caregiver experiences of advanced colorectal cancer care and receiving early palliative care to inform development and refinement of an early palliative care pathway for patients with advanced colorectal cancer. Methods: This is a qualitative study that is embedded within a larger program of research on the implementation of the Palliative Care Early and Systematic (PaCES- a province-wide project aimed at developing and delivering an early and systematic palliative care pathway for advanced colorectal cancer patients and their caregivers in Alberta) intervention. We conducted telephone interviews with patients living with advanced colorectal cancer and family caregivers to understand their experiences before implementing the early palliative care pathway (standard cancer care) and after the implementation of the palliative care pathway. Patients and caregivers were recruited with the help of clinician-research team members in Calgary and Edmonton. Data was thematically analyzed using deductive, inductive, and iterative coding strategies. Findings: Gaps in standard oncology care included poor care coordination, misunderstanding of palliative care, confusion regarding role of family physician, and lack of advance care planning discussions. Four main themes shaped participants’ experience of early palliative care: care coordination, perception of palliative care, coping with advanced cancer, and patient and family engagement. Main differences before and after implementation of the care pathway were in care coordination and communication with and among healthcare providers, understanding of palliative care, involvement of the family physician, and advance care planning discussions. Conclusions: Early palliative care delivered by a specialist palliative care nurse can improve advanced cancer care. The early palliative care pathway seeks to implement a standardized pathway that can be implemented across Alberta (including urban and rural settings), to guide routine advanced cancer care.
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patient centred care, patient oriented research, advanced cancer, patient experience, early palliative care, palliative care
Citation
Ahmed, S. (2020). Patient and Caregiver Experiences Living with Advanced Colorectal Cancer & Receiving Early Palliative Care in Alberta (Master's thesis, University of Calgary, Calgary, Canada). Retrieved from https://prism.ucalgary.ca.