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Perspectives of Patients on Communication and Involvement in Decision-Making during Palliative Care: A Qualitative
Evelyne Nankundwa1, Clementine Kanazayire2, Fitch Margaret3
1General Nursing Department, School of Nursing and Midwifery, College of Medicine and Health Sciences, University of Rwanda, Kigali, Rwanda.
Background:
In palliative care, communication is crucial for understanding and responding to patients' needs and preferences throughout their illness journey. It involves the clear exchange of information, supports active involvement in decision-making, and fosters an empathetic and trusting care relationship.
Aim:
This review explored the perceptions of patients living with advanced illness regarding communication and their engagement in decision-making with healthcare providers during the course of palliative care.
Methods:
A qualitative research design was employed, using semi-structured interviews to gather rich, personal insights from participants. Data were processed using Interpretative Phenomenological Analysis (IPA).
Results:
Four main themes and eight corresponding subthemes were identified through the analysis: (1) Patients' perceptions of effective communication and information; (2) Perceived impact of conversations; (3) Challenges in patient-provider discussions; and (4) Engagement in decision-making processes. Each subtheme was analyzed within its respective main theme, providing concise yet meaningful insights into how participants experienced and understood communication and decision-making during palliative care.
Conclusion:
Communication is fundamental to facilitating patient involvement in decision-making within palliative care. Despite patients' desire to engage actively, many experience unclear and insufficient information, particularly at critical points such as diagnosis and disease progression. To support meaningful engagement and align care with patient values and preferences, we need targeted, person-centred communication.
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