What are the experiences and needs of patients and carers receiving community palliative care in Malaysia? A qualitative study

Background: Patients with life-limiting illnesses are dependent on their families and healthcare providers for care. In Malaysia, there is a lack of data exploring the experiences and needs of patients and carers. It is not known whether these needs are being identified accurately by the palliative care providers. Aim: The aim of this study was to explore the experiences and needs of patients with life-limiting illnesses receiving community palliative care and the experiences of their formal and informal carers when providing care for the patients. Design: A qualitative study involving individual semi-structured in-depth interviews and focus groups. The interviews and focus group discussion were audio-recorded, transcribed verbatim, and the transcripts and fields notes were used as data for thematic analysis. Setting/participants: The participants were patients, carers, and healthcare professionals from Hospis Malaysia, an urban community palliative care service in Malaysia. Results: Four main themes emerged: the lack of choice; emotional impact of illness; needs of patients and carers; and the role of spirituality in coping with the illness. The healthcare professionals' perceptions of patients' and carers' needs agreed with the findings from patients and carers. Carers expressed emotional distress and the need for more information and practical advice. Heavy workload was identified as a barrier for the nurses to providing more comprehensive care, including carer support. Conclusions: This study highlighted the differences between perceived and actual needs of patients and carers. Therefore, it is important for healthcare providers to engage patients and carers in decision making, to identify and address their information and emotional needs.