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Patient Experiences and Information Needs in Palliative Care: A Qualitative Descriptive Study
*Corresponding author: Ni Luh Putu Inca Buntari Agustini, Department of Nursing, Institute of Technology and Health Bali, Denpasar, Indonesia. incaagustini@gmail.com
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Received: ,
Accepted: ,
How to cite this article: Agustini NLPIB, Israfil I, Suyasa IGPD. Patient Experiences and Information Needs in Palliative Care: A Qualitative Descriptive Study. Indian J Palliat Care. 2026;32:304-11. doi: 10.25259/IJPC_351_2025
Abstract
Objectives:
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.
Keywords
Digital technology
Information access
Palliative care
Patient experiences
INTRODUCTION
Palliative care aims to enhance the quality of life for patients with life-threatening illnesses by addressing their physical, psychological, social and spiritual needs comprehensively.[1] It also supports the well-being of families and caregivers.[2,3] Despite these goals, many patients face challenges in understanding their condition, the treatment process and available care options. A lack of clear and relevant information often results in confusion, heightened anxiety and reduced engagement in decision-making. This highlights the importance of exploring patients’ experiences in accessing information.
The World Health Organization (WHO) estimates that each year approximately 4.4 million people in the WHO European region, including 140,000 children, require palliative care. Yet, access remains limited in low- and middle-income countries. Palliative care should ideally be available in hospitals, specialised units, hospices and through home-based services in primary care. With the global rise of non-communicable diseases and ageing populations, the demand for palliative care will continue to grow. Early access to care can reduce unnecessary hospital visits and health service utilisation.[4]
In Indonesia, the Ministry of Health reports increasing prevalence of chronic diseases such as cancer, renal failure and cardiovascular diseases, which require palliative services. However, patients’ information needs are often unmet. Globally, about 56.8 million people require palliative care, but only 14% receive it, with most residing in low- and middle-income countries, including Indonesia. Furthermore, 42% of countries have no formal palliative services.[5] Although palliative care in Indonesia has been introduced since 1992, services remain concentrated in urban areas, and many patients receive palliative care only during the terminal phase.[6] Enhancing awareness and access from earlier stages is essential to support patients in living as actively as possible, receiving optimal care and dying with dignity.[7,8]
Over the past two decades, palliative care has expanded significantly across hospital-based and community-based services. Initially centred on symptom management, the paradigm has shifted toward active patient involvement in care processes. Patients often present with complex, multidimensional and dynamic symptoms that negatively affect their quality of life and that of their families. Nurses delivering palliative care must therefore recognise and effectively manage these symptoms.[9] Importantly, healthcare providers must ensure that patients receive accurate, comprehensible and culturally relevant information. At the end of life, understanding patients’ cultural interpretations, listening to their needs and providing respectful support are crucial, even though it is not possible to master all cultural contexts.[10-12]
Palliative nursing adopts a holistic, patient- and family-centred approach aimed at preventing and managing serious illness and addressing physical, psychological and spiritual problems. Services are delivered across various healthcare settings, emphasising adherence to professional standards, competencies and ongoing professional development.[13] Thus, it is critical to explore patients’ experiences and their needs for accessible information in palliative care. A descriptive, qualitative approach enables in-depth exploration of patients’ perceptions, expectations and challenges, providing a foundation for patient-centred interventions. By understanding patients’ experiences and information needs, healthcare providers can design more effective, culturally sensitive and holistic communication and education strategies that align with the overall goals of palliative care. This study aimed to explore patients’ experiences and information access needs in the context of palliative care.
MATERIALS AND METHODS
Research design
This study employed a qualitative descriptive design to explore patient experiences and information needs in accessing palliative care information. This study was reported in accordance with the Consolidated Criteria for Reporting Qualitative Research (COREQ). The checklist is provided in the Supplementary File.
Participants
A total of 20 participants were recruited, consisting of 10 patients receiving palliative care and 10 family members to enable data triangulation and obtain multiple perspectives on information needs in palliative care. Participants were selected using purposive sampling to ensure the inclusion of individuals with direct experience related to the study phenomenon. Recruitment was conducted through the palliative care unit of a tertiary hospital. Healthcare professionals within the unit assisted in identifying potential participants who met the eligibility criteria. Eligible patients and family caregivers were approached by the research team during routine visits or appointments. The researchers explained the study objectives, procedures and ethical considerations, and individuals who agreed to participate were provided with an information sheet and asked to sign a written informed consent form before the interview. The inclusion criteria were as follows: (1) Age ≥18 years; (2) Currently receiving palliative care services or serving as a primary family caregiver for a patient receiving palliative care; (3) Willing to participate voluntarily and (4) Able to communicate effectively in the interview process. Data collection and recruitment were conducted concurrently and continued until data saturation was achieved. Saturation was considered reached when no new themes or significant insights emerged from successive interviews. This occurred after the twentieth interview, indicating that the sample size was sufficient to capture the range of participant experiences and perspectives relevant to the study objectives.
Data collection
Data were collected using semi-structured face-to-face interviews with both patients and family members. Each interview lasted approximately 40–60 min and was conducted in the palliative care unit of Bali Mandara Hospital, Bali Province, Indonesia.
Instruments
The instruments included the research team, an interview guide, an audio recorder and field notes. The interview guide consisted of three main questions: (1) How do you usually obtain information about palliative care? (2) What challenges have you encountered in seeking information about palliative care? and (3) What do you expect from hospitals to facilitate easier access to information during hospitalisation and home care?
Data analysis
Data were analysed using Braun and Clarke’s six-phase thematic analysis: (1) Familiarisation with data by transcribing interviews verbatim and reading transcripts repeatedly; (2) Initial coding by identifying and labelling relevant data segments; (3) Generating themes by clustering related codes into categories; (4) Reviewing themes to ensure consistency with the data; (5) Defining and naming themes with clear boundaries and representative labels, including subthemes and (6) Producing a narrative analytical report supported by participant quotations and linked to relevant literature.[14]
Rigour
Trustworthiness was ensured using Lincoln and Guba’s criteria.[15] Credibility was established through member checking and team discussions. Dependability was achieved through an audit trail documenting the research process. Confirmability was maintained through the use of field notes, transcripts and coding records. Transferability was supported through rich contextual descriptions and participant quotations.[16]
RESULTS
A total of 20 participants were involved in this study, with most being female and having educational backgrounds ranging from junior high school to university. Participants were divided into two groups: 10 palliative patients (coded P1–P10) and 10 family members (coded F1–F10) as data triangulation sources. Most palliative patients were diagnosed with cancer (CA) and had been receiving palliative care for between 2 months and 6 years. The majority of family participants were patients’ spouses. The demographic characteristics of participants are presented in Table 1.
| Participants (code) | No | Gender | Age (years) | Level of education | Diagnosis | Care duration |
|---|---|---|---|---|---|---|
| Patients (P) | P1 | Female | 34 | Senior High School | Breast Cancer | 3 months |
| P2 | Female | 52 | Senior High School | Breast Cancer | 2 years | |
| P3 | Female | 65 | Elementary School | Lung Cancer | 2 years | |
| P4 | Female | 51 | Bachelor | Breast Cancer | 1 year | |
| P5 | Female | 76 | Elementary School | Colon Cancer | 5 years | |
| P6 | Male | 53 | Senior High School | Kidney failure | 6 years | |
| P7 | Female | 55 | Senior High School | Breast Cancer | 6 years | |
| P8 | Female | 53 | Elementary School | Colon Cancer | 1 year | |
| P9 | Female | 56 | Senior High School | Breast Cancer | 3 months | |
| P10 | Female | 36 | Junior High School | Skin Cancer | 2 months | |
| Participants (code) | No | Gender | Age (years) | Level of education | Relation with patient | |
| Families (F) | F1 | Male | 32 | Senior High School | Husband | |
| F2 | Male | 55 | Senior High School | Husband | ||
| F3 | Male | 65 | Senior High School | Husband | ||
| F4 | Male | 54 | Bachelor Degree | Husband | ||
| F5 | Female | 48 | Junior High School | Daughter-in-law | ||
| F6 | Male | 23 | Bachelor Degree | Son | ||
| F7 | Male | 55 | Senior High School | Husband | ||
| F8 | Male | 53 | Junior High School | Husband | ||
| F9 | Female | 29 | Bachelor Degree | Daughter | ||
| F10 | Male | 39 | Senior High School | Husband | ||
Ca: Cancer
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 include the internet (e.g., Google and 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 [Figure 1].
Figure 2 illustrates a conceptual model of how patients in palliative care obtain and process health information. Information sources, including healthcare professionals (physicians and nurses), family and friends and digital platforms (internet and social media), serve as the primary inputs. These sources are influenced by two key factors: Facilitators and barriers. Facilitators, such as support from healthcare providers and family assistance, enhance patients’ ability to access and understand information. In contrast, barriers, particularly difficulties in understanding medical terminology, may hinder comprehension. These interacting factors shape patients’ overall understanding of their health condition and care. Improved understanding subsequently leads to increased needs and expectations for digital health resources, including accessible online information and health applications or platforms. The model highlights the dynamic relationship between information sources, mediating factors and patient understanding, emphasising the importance of effective communication and digital support in palliative care.
Theme 1: Sources of information about palliative care
One of the major themes identified through data analysis in the present study was the sources of information about palliative care. Participants mentioned that physicians, nurses, families, friends, and communities were their source of information.
Subtheme 1.1: Information from physicians and nurses
Participants reported that their primary source of information was physicians and nurses. Many patients emphasised that information from healthcare providers was considered the most accurate and trustworthy.
‘…Usually, I obtain information about breast cancer from the doctor’ (P1)
‘I often get information by consulting with the doctor who is treating me’ (P6)
‘I usually consult the doctor who is managing my care’ (P7)
‘I receive information on how to take care of myself from the doctor’s guidance’ (P8)
‘The information about self-care comes through the doctor’s instructions’ (P9)
‘I obtain information about how to care for myself directly from the doctor who treats me, and I follow the doctor’s directions’ (P10)
‘So far, I have sought information about cancer by consulting with the doctor or nurse caring for my wife’ (F1)
‘Usually, I get information about caring for my wife by asking the doctor, because I often feel confused about how to care for her at home, so I ask the doctor many questions’ (F3)
‘I usually obtain information about how to care for a patient by consulting directly with the doctor treating my family member, because I believe information from doctors is the most accurate and reliable’ (F6)
‘I have always obtained information about patient care directly from the doctor, because the information provided is clearer and more trustworthy’ (F10).
Subtheme 1.2: Information from family members
In addition, family members, such as children, spouses or in-laws, were important sources of information. They often re-explained the doctor’s explanations in simpler language:
‘…For information about my illness, I usually get it from my child, especially regarding my care and what foods I can and cannot eat. My child always explains it to me’ (P2)
‘I seek information about self-care mainly from my family, especially my child, who often explains how I should take care of myself’ (P3)
‘I usually get the information from my husband, who explains to me how to take care of myself’ (P4)
‘I often receive information from my daughter-in-law, because I don’t fully understand when the doctor explains it. After the doctor gives the explanation, my daughter-inlaw usually re-explains it to me’ (P5)
‘I also get information from my child’ (P6)
‘Usually it’s my child, because I don’t understand very well. So, my child speaks with the doctor and then explains it to me’ (F2).
Subtheme 1.3: Information from friends and community
Some participants also reported obtaining information from peers or community members, especially those who had similar experiences:
‘…I also get information by sharing with friends who have recovered from cancer’ (P1)
‘I often ask people around me who have already recovered… from them, I can gain direct experiences from former cancer patients’ (F1).
Theme 2: Alternative sources of health information
Participants also mentioned alternative sources for health information, including the internet and social media.
Subtheme 2.1: Information from the internet (e.g., Google and websites)
The internet, particularly Google and health websites, was frequently used to search for supplementary health information:
‘…In addition, I also get information from Google about how to take care of myself’ (P2)
‘I also try to find out on my own through the internet about my care’ (P4)
‘…I also search for information through Google, that’s all’ (P7)
‘I get information from the internet, and also from the healthcare facility I previously visited. I also browsed Google, so from there I learned about cancer and its treatment’ (F4)
‘Not only that, I often look for additional information from reliable sources, such as official health websites, to make sure that what I do when caring for the patient is correct and not mistaken’ (F6).
Subtheme 2.2: Information from educational videos on social media platforms (e.g., YouTube, TikTok)
Social media, especially YouTube and TikTok, also provided accessible educational content:
‘…I also add to my knowledge by watching short TikTok educational videos that discuss cancer’ (P1)
‘Sometimes I watch educational YouTube videos about kidney failure’ (P6)
‘I usually get information about how to change a colostomy bag from YouTube educational videos as well as from the doctor or nurse caring for my mother… I try to learn from YouTube, so actually I get information from two sources, YouTube and the nurse, but the clearest explanation still comes directly from the nurse’ (F5).
Theme 3: Facilitators in accessing health information
Subtheme 3.1: Direct information provided by physicians
Several participants stated that they experienced no difficulties because information was directly accessible through doctors and supported by family:
‘…So far, I have not had any difficulties in finding health information because I often receive it from my family and the doctor who treats me’ (P3)
‘There are no difficulties because the doctor’s instructions are already very clear’ (P9)
‘I find information easily and without difficulty because the doctor’s guidance is very clear and easy to understand’ (P10)
‘I obtain information about patient care directly from the doctor, because the explanations are clearer and trustworthy. In seeking health information for the patient, I have not experienced any difficulties’ (F1).
Subtheme 3.2: Support from family members in obtaining information
Patients did not encounter difficulties in finding information because family members assisted them in their search.
‘…So far, I have not experienced any difficulties in finding health information because I often receive it from my family’ (P1)
‘I feel no difficulty in finding health information because my husband looks it up for me…’ (P4)
‘I have not faced difficulties because I learned how to care for patients from my own past experience in caring for relatives. In addition, I often search for supplementary information on reliable health websites, which makes what I do easier and clearer’ (F6).
Theme 4: Barriers in understanding health information
Subtheme 4.1: Difficulty understanding medical terminology
While access itself was not problematic, participants expressed difficulty in understanding information, especially due to the use of complex medical terminology:
‘…I don’t really understand when the explanation uses medical terms… sometimes I get confused’ (P2)
‘Honestly, I don’t understand when the doctor explains, because the language is too difficult. Usually, my child listens, and then explains it back to me. I just follow whatever the doctor and my child say’ (F2)
‘The difficulty I experience is not fully understanding the language or explanations given by the nurses. Otherwise, I can always get the information, but we do find it rather difficult to understand the medical terminology used in their explanations’ (F2)
‘So far, I have not had difficulties in finding patient health information, because now it is widely available on websites and easy to search for. However, sometimes I still get confused in fully understanding the explanations provided’ (F4).
Theme 5: Expectations for the use of digital technology
Subtheme 5.1: Easily accessible online health information
Patients and families expressed strong expectations for hospitals to provide easy-to-access online health information and digital platforms for communication with healthcare professionals:
‘…Perhaps by providing health and patient care information that is easily accessible on the internet or online’ (P1)
‘I hope the hospital can offer more practical access to information, for example, online communication with healthcare staff, so we can still ask questions even when we are already at home’ (P10)
‘The hospital could also provide online consultation services with doctors or nurses, so if there are any questions or confusion, we can ask directly and receive quick answers’ (F6).
Subtheme 5.2: Digital applications or platforms for communication with healthcare professionals
Patients expressed expectations for applications or platforms that would enable easy communication with healthcare providers.
‘…I hope the hospital provides health information and care guidance through technology such as applications, websites, or WhatsApp groups. That way, I can get guidance and ask questions anytime, whether during hospitalization or after returning home, so my family will not feel confused about how to provide care’ (P5)
‘My hope for the future is that there will be an application that allows direct communication with healthcare providers’ (P6)
‘I always receive information from nurses or doctors about how to care for my wife, either here or at home, but perhaps a mobile application would make it easier for me. The wording should also be simplified so that I can understand without confusion’ (F2)
‘In the future, I hope there will be an application that allows direct communication and confirmation with doctors’ (F3)
‘Looking ahead, I hope there will be an application that enables direct communication with doctors or nurses about what actions can be taken to care for patients’ (F5)
‘My hope for the future is that hospitals can develop a health application that patients and families can download. Through it, we could obtain health information, caregiving instructions, and perhaps additional tips, making everything easier to understand’ (F6)
‘I hope that one day hospitals can develop an application that allows us to communicate directly with doctors. In this way, health and patient care information will be easier to access, and patients and families can receive faster responses to their questions’ (F10).
DISCUSSION
This study explored patient experiences and information needs in palliative care, identifying five key themes: Sources of information, alternative sources, facilitators, barriers to comprehension and expectations for digital technology. The findings highlight how patients and families obtain and interpret health information, shaping their understanding of palliative care.
Physicians and nurses were identified as the primary and most trusted sources of information, consistent with previous studies.[17,18] Effective patient–provider communication is therefore essential, as patients rely on healthcare professionals for both clinical information and decision-making support. Clear, empathetic and patient-centred communication improves health literacy and engagement by ensuring that complex information can be understood and applied in care decisions. Previous studies have highlighted that clear and compassionate communication between healthcare providers and patients plays a critical role in improving health literacy and patient engagement in palliative care settings.[19] When information is communicated using understandable language and supported by opportunities for questions and clarification, patients are more likely to develop a better understanding of their condition and participate in shared decision-making.[20,21] Conversely, the use of technical medical terminology, time constraints during consultations and inconsistent communication among healthcare providers may hinder patient understanding and lead to confusion regarding treatment goals and care plans. Furthermore, improving communication strategies through supportive tools, including written educational materials, visual aids and digital platforms, may enhance information accessibility for patients and families. Digital health interventions, such as mobile applications and online information platforms, have increasingly been recognised as valuable tools to complement communication with healthcare professionals and improve continuity of care in palliative settings.[22,23] Therefore, integrating effective communication practices with accessible digital information resources may help address patients’ information needs and strengthen patient-centred palliative care delivery.[24] Family members also play a crucial intermediary role by interpreting and simplifying medical information, particularly for patients with limited health literacy, reinforcing findings from prior research.[25-27] In addition to traditional sources, participants reported using the internet and social media as alternative information channels. This reflects the growing role of digital health resources in patient education.[26,28] While these platforms improve access to information, concerns remain regarding the reliability of online content, highlighting the importance of strengthening digital health literacy. Facilitators such as direct access to physicians and family support were found to enhance information accessibility, aligning with previous studies emphasising the role of effective communication and family involvement.[29,30] However, barriers to understanding persist, particularly due to complex medical terminology, resource constraints; literacy, training and skills; governance, operational and communication issues and technical issues.[31] Limited health literacy remains a significant challenge in palliative care and underscores the need for plain language, culturally sensitive communication and supportive tools such as visual aids.[32-34] Participants also expressed strong expectations for digital technology, including online consultations and accessible digital platforms. These findings align with broader trends in digital health and telemedicine, which enhance patient engagement and continuity of care.[35-37] However, successful implementation requires attention to digital literacy, accessibility and data privacy.
This study has several practical implications. Healthcare professionals should prioritise clear and culturally sensitive communication, while actively involving families in patient education and care. Healthcare institutions should provide reliable digital health resources, and policymakers should support the integration of digital innovations in palliative care systems. Limitations include a small sample size and a predominance of cancer patients, which may limit transferability. In addition, the study did not include healthcare providers’ perspectives. Future research should incorporate multiple stakeholders to provide a more comprehensive understanding of communication practices in palliative care. Despite these limitations, this study contributes to the literature on health literacy, patient– provider communication and digital health in palliative care. The findings highlight the interconnected roles of healthcare professionals, family support and digital resources in shaping patient understanding and decision-making. Conceptually, the findings suggest that health information-seeking in palliative care is a dynamic process influenced by interactions between healthcare providers, family support and digital resources, moderated by facilitators and barriers. This underscores the need for integrated approaches combining patient-centred communication, family engagement and digital health strategies to enhance health literacy and support informed decision-making.
CONCLUSION
This study found that patients’ experiences in obtaining palliative care information are influenced primarily by doctors, family members and communities, with the internet and social media serving as supplementary sources. While most participants reported no barriers in accessing information due to strong support systems, difficulties arose when information was presented using complex medical terminology. Patients and families expressed clear expectations for hospitals to adopt digital technologies, such as online platforms and mobile applications, to improve information access and continuity of care.
Healthcare providers should use clear, patient-centred communication strategies and actively involve families in the process. Hospitals are encouraged to develop official digital platforms that enhance accessibility, reliability and interactivity of information. Future research should broaden the scope to include patients with non-cancer diagnoses and evaluate the effectiveness of digital interventions in improving patient outcomes.
Ethical approval:
The research/study was approved by the Institutional Review Board at the Health Research Ethics Committee of the Institute of Technology and Health Bali, approval number 03.159/KEPITEKES-BALI/V/2025, dated 30th May 2025.
Declaration of patient consent:
The authors certify that they have obtained all appropriate patient consent forms. In the form, the patient has given consent for participant information to be reported in the journal. The patient understands that the patient’s names and initials will not be published and due efforts will be made to conceal their identity, but anonymity cannot be guaranteed.
Conflicts of interest:
There are no conflicts of interest.
Use of artificial intelligence (AI)-assisted technology for manuscript preparation:
The authors confirm that there was no use of artificial intelligence (AI)-assisted technology for assisting in the writing or editing of the manuscript and no images were manipulated using AI.
Financial support and sponsorship: This study was funded by Directorate of Research and Community Service under the research grant number 129/C3/DT.05.00/PL/2025, awarded in 2025.
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