Patient Experiences and Information Needs in Palliative Care: A Qualitative Descriptive Study
Ni Luh Putu Inca Buntari Agustini, Israfil Israfil, I Gede Putu Darma SuyasaObjectives:
Palliative care aims to enhance the quality of life for patients facing terminal or life-threatening illnesses. Unfortunately, many patients encounter difficulties in understanding their condition, treatment processes and available care options due to limited access to clear and relevant information. This often leads to confusion, disrupted decision-making and increased anxiety. This study aimed to explore patient experiences and information needs in the context of palliative care.
Materials and Methods:
A qualitative descriptive design was employed, involving 20 participants, consisting of 10 palliative patients and 10 family members, to triangulate data sources. Participants were selected through purposive sampling based on predefined inclusion criteria. Data were collected through semi-structured face-to-face interviews and analysed using thematic analysis.
Results:
Five main themes with 10 subthemes were identified: (1) Sources of information about palliative care: information from physicians and nurses, information from family members and information from friends or community; (2) Alternative sources of health information included the internet (e.g., Google, websites) and educational videos on social media platforms (e.g., YouTube and TikTok); (3) Facilitators in accessing health information: Direct information provided by physicians and support from family members in obtaining information; (4) Barriers in understanding health information: difficulty understanding medical terminology and (5) Expectations for the Use of Digital Technology: easily accessible online health information and Digital applications or platforms for communication with healthcare professionals.
Conclusion:
Patient experiences in accessing palliative care information are shaped by interactions with doctors, family members and communities, while the internet and social media serve as additional sources. Most patients reported no difficulties due to the support of healthcare providers and their families. However, medical terminology created barriers to comprehension. Patients expressed strong expectations for hospitals to implement digital technologies to enhance access to information and continuity of care.