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Abstract

Background:

Palliative care is about more than providing high-quality medical care; it is about maximizing quality of life while dying. The role that food plays in palliative care is not well studied or understood. Most research on food in palliative care focuses on nutrition, rather than the importance of serving food that patients recognize, enjoy, and want to consume. This study aimed to understand the role of food as an integral part of person-centred palliative care.

Methods:

We engaged with patients, caregivers, staff, and hospital decision-makers at the Bruyère Health Palliative Care Unit in Ottawa, Canada. We focused discussions on the role and importance of food as part of palliative care, gaps regarding food in this setting, and how their needs could be better met. To collect data, we used rapid team-based ethnography, including 10 days of fieldwork in the Palliative Care Unit, informal conversations with patients, caregivers, and staff, observations of meals, and content analysis of food-related documents. Methods also included arts-based drawing techniques, semi-structured interviews with patients (n = 4), caregivers (n = 3), and hospital administrators and food services decision-makers (n = 4), and self-reflexive journal entries by researchers. Data from all sources were triangulated, and Reflexive Thematic Analysis was used to inductively identify key themes.

Results:

The three overarching themes we found were: (1) the role of food changes for patients and caregivers as they progress through their palliative care journey, (2) there is a disconnect between the food services department and palliative care unit staff and patients, and (3) there is a need to have difficult conversations around the changing role of food with patients and caregivers and staff do not feel well-equipped to do this.

Conclusion:

To improve care, we first recommend addressing communication gaps by equipping palliative care providers with the skills they need to have difficult conversations about food. Secondly, we recommend that providers work closely with the food services department to ensure that they are aware of the unique needs of palliative care patients and help them identify areas where addressing unmet needs is aligned with quality improvement initiatives to accelerate change for patients and caregivers.

Plain language summary

Exploring how food supports personalized care at the end of life

This study looked at how food can support comfort and quality of life for people receiving palliative care. While most research focuses on nutrition, this study explored the emotional and personal meaning of food for patients and their families. We spent 10 days in the palliative care unit speaking with patients, caregivers, staff, and hospital decision-makers, observing meals and looking at food-related documents. We used interviews and an art-based drawing activity to understand how food is experienced in this setting. We found that the role of food changes over time during a person’s end-of-life journey. Additionally, there are also communication gaps between food services and care teams, and staff often feel unprepared to talk with patients and families about difficult changes in appetite or eating. This study suggests improving training for staff to have these difficult conversations around food with patients and caregivers and encouraging better collaboration between food services and palliative care teams to better meet patients’ needs.

Keywords

palliative care patient-centred care food services qualitative research ethnography

Introduction

Palliative care is about more than providing high-quality medical care; it seeks to support a person’s emotional, social, and spiritual needs to maximize their quality of life while dying.^1,2 Food has the ability to contribute meaningfully to meeting these needs. While palliative patients’ food intake can vary, many patients can consume little food. This makes what food they do consume precious as a means of demonstrating love, connection, and providing them with comfort and enjoyment from the diagnosis of a terminal illness through to the last days of life. Food is an important part of a person’s identity and is intimately linked to culture, informing preferences for certain foods, meals, and flavours.^3,4

In Ontario, where minority groups represent more than 34% of the population, culturally relevant care is essential.⁵ Research, including findings from our 2023 qualitative work with palliative care physicians across Ontario, indicates that culturally relevant and safer care improves patient experience, quality of life, and health equity.^6–9 Published research on food in the palliative care setting is limited; however, a 2021 study highlighted the lack of influence of cultural diversity and traditional Indigenous foods in Canadian hospital menus generally, emphasizing the need for food services to consider these aspects for better patient experience and care.¹⁰ Another Ontario-based study found that hospital staff recognize patients’ desire for familiar foods, but face challenges in meeting diverse preferences due to budget and capacity limitations.¹¹ Similarly, a study in British Columbia found that patients expressed a desire for greater cultural diversity in food options, more fresh produce, and improved flavours in hospital meals.¹² All three studies recognized the need to provide more person-centred and culturally relevant food options in healthcare settings.

The existing literature establishes the need to take culture into account in palliative care generally, concerning pain management and goals of care discussions.^13,14 However, the role that culturally informed and safer food and drink play in healthcare is underemphasized, understudied, and virtually absent in palliative care research. We argue that the role of food in the context of person-centred palliative care extends beyond meeting nutritional requirements to considering how prioritizing personal preferences, cultural alignment, and feelings of safety and comfort can enhance a patient’s quality of life. A person-centred approach to care focuses on the elements of care and support that matter most to the patient and their caregivers.¹⁵ Moreover, little work has been done to capture patient or caregiver perspectives on food in Palliative Care Units (PCUs), and no research of this type has been published yet.¹⁶ Our research at the Bruyère Health PCU filled this gap by confirming that offering foods that align with patient preferences and, in particular, offering food options that are culturally relevant for people from ethnocultural minority backgrounds, is viewed as an essential part of equitable, person-centred care by palliative patients, caregivers, and staff.

This study had three aims: firstly, to understand if customizing meal options in Bruyère’s PCU is a priority for patients and caregivers. Secondly, to assess and document how patients’ food choices and preferences are accommodated in the PCU with a focus on meeting the food preferences of ethnocultural minority groups, the challenges and barriers encountered in customizing menus and meal options for PCU patients, and the processes and practices that have been used to address them. Finally, to share the findings with patients and caregivers from ethnocultural minority groups and staff members at the PCU for their input and to describe their priorities for future quality improvement related to food in palliative care.

Methods

Study design

This study was rooted in a community-based research approach¹⁷ and used an exploratory qualitative study design. The members of our research team worked within an interpretivist epistemological framework,¹⁸ operating under the assumption that reality is socially constructed and that knowledge emerges through interaction, experience, and meaning-making. We engaged with the subjective experiences of palliative patients, caregivers, and staff at the Bruyère Health PCU to understand how they interpret the role of food in this setting and identified opportunities for meaningful change. To support this, we used the method of data triangulation by collecting data using a variety of research methods, such as ethnographic fieldwork, semi-structured interviews, and arts-based methods. This approach enabled us to explore the complexity of participants’ experiences from multiple perspectives. Throughout the study, we adhered to the principles of reflexivity and transparency, and our reporting is guided by the Consolidated Criteria for Reporting Qualitative Research (COREQ)¹⁹ checklist to enhance methodological rigour.

Study setting

This study was conducted in the PCU of St. Vincent Hospital, part of Bruyère Health, in Eastern Ontario, Canada. The PCU housed 31 patients in single, double, and group rooms on three adjoining hospital wings. The unit is university-affiliated and staffed by doctors, nurses, pharmacists, dietitians, physiotherapists, occupational therapists, speech-language pathologists, social workers, learners, and spiritual care advisors. Nurses worked in two rotating shifts (morning and night) per day with a visible presence at all times. Allied professionals, such as pharmacists and social workers, and spiritual care advisors, were present during the day from 08:00 to 16:30. The presence of other allied professionals, such as dieticians, physiotherapists, occupational therapists, and speech-language pathologists, was 1–2 days a week based on allotted FTE (full-time equivalent). Physicians and residents were present during the day and rotated between wards. The hospital used a cold chain food preparation process, whereby food was sourced externally and delivered to the hospital in bulk. Food services staff portioned the frozen food onto plates on a beltline, and the trays were reheated in industrial heating pods using a retherm process. At mealtimes, food trays were placed on meal carts, then into elevators, and wheeled onto the PCU floor, where they were distributed to patient rooms by PCU nursing staff. At the end of the meal period, trays were collected and returned to another meal cart. Breakfast was served at 08:00, lunch service began at 11:45, and the evening meal service occurred at 16.45. The kitchen worked with a 21-day rotating menu and was in the process of rolling out a new program called “Bedside Connect” during our fieldwork. The Bedside Connect program was intended to employ a dietary technician to meet with certain patients (those on “regular” diets and “easy to chew textures”) at their bedside every few days to survey and adjust their meal preferences for the following days but this system was not fully implemented during our data collection period and not every patient (those on droplet precautions and those with language or communication barriers) fit the criteria to be seen. The PCU also had a kitchen area in each of its two common rooms that contained a refrigerator, water dispenser, microwave, toaster, and kettle. The kitchen area was stocked with coffee, tea, and various snacks available at all times for patients and caregivers.

Theoretical framework

This study was guided by the Traditional Healing, Medicines, Foods, and Services framework, inspired by equity-focused principles, approaches, and practices based on traditional Indigenous teachings.²⁰ The Traditional Healing, Medicines, Foods, and Services framework is a model designed to integrate Indigenous healing practices into conventional healthcare systems. The key components of the framework include traditional foods, traditional healing, and traditional supports and services, and provide a foundation for exploring how these factors promote well-being. This framework served as an important guide for exploring the role of food in palliative care through a cultural lens.

Study population

The study population consisted of patients, caregivers, and staff at the Bruyère Health PCU, and administrators in the food services department at Bruyère Health. All participants were above 19 years of age, spoke English or French, and had the capacity to consent.

Ethical approval

This study was approved by the Bruyère Health Research Ethics Board (M16-24-009). All procedures followed ethical guidelines for research involving human participants. Participation was entirely voluntary, and all participants provided informed consent prior to taking part. Following the Strategy for Patient-Oriented Research (SPOR) guidelines,²¹ most interview participants received a $25 Amazon gift card in reciprocity for their time. Indigenous participants received a $150 Amazon gift card in reciprocity for their time, as this is standard practice for equity in research. Data were anonymized and stored securely, and findings are reported in a way that protects participants’ confidentiality.

Data collection

This study relied on data collected by a variety of qualitative methods, including rapid team-based ethnography, interviews, arts-based methods, and content analysis of documents to enable triangulation.

Our use of rapid team-based ethnography, a method developed by Armstrong and Lowndes,²² involved the collection of rich observational and narrative data within a short time frame, allowing our large research team to develop a thorough understanding of the population and context being studied. The principal investigator of this team (K.K.M.) was involved in developing and piloting this method in a large-scale ethnographic study in long-term care homes,²³ and there is precedence for using ethnographic methods to study food in institutional spaces,²⁴ including at Bruyère Continuing Care’s long-term care home in 2010.²² Prior to engaging in fieldwork, the research team underwent ethnography training and were prepared to work in a palliative care setting. Additionally, our team established relationships with PCU staff and food services management to ensure buy-in for the project and presented our project to PCU nursing staff during morning rounds at the start of the field observation period. Informational posters were put up in the PCU outlining the study, advertising the dates, and the reasons for our site visit. During the 10-day data collection period (June 14th to June 26th, 2024), a six-person team (K.K.M., W.L., S.P., M.W., K.B., A.H.) undertook 4-h overlapping shifts covering breakfast to supper each day at the PCU. The overlapping shifts during the 10-day data collection period ensured that the research team was able to speak with everyone on the PCU. The study sample was the same as the study population, except for those who explicitly opted out. Everyone else was included in the study in some capacity, either by engaging in formal interviews, observation, participating in arts-based methods, or informal conversations. While on site, research team members spent time in common spaces on the unit, engaging in informal conversations with interested patients and caregivers who were unable to participate in formal interviews. Informed consent was not obtained during these informal interviews to reduce the burden, but the purpose of the study was explained, and if the individual was interested in engaging further, we discussed their perspectives and experiences with food as part of palliative care. The research team members also observed meals and mealtimes in common spaces and recorded their observations and self-reflexive insights as non-identifiable field notes. See Supplemental Appendix A for our Fieldnote Template.

In addition to participant observation and casual engagement in common spaces, we also conducted formal semi-structured interviews with patients, caregivers, and staff at the PCU. We recruited patient and caregiver participants through a consent-to-contact process facilitated by a member of the patient’s care team, whereby a PCU staff member would ask a patient or caregiver if they were interested in learning about our study, provide them with a summary of our aims, and ask if they consent to be introduced to a member of the research team. Once this verbal consent was obtained, the researcher could enter the patient’s room and, based on the participant’s preference, either speak with them informally or secure written informed consent to conduct an interview or engage them in arts-based data collection.

For the semi-structured interviews, PCU patients, caregivers, hospital administrators, and food services decision-makers were recruited using convenience sampling. All interviews were conducted in-person in the PCU, lasted between 30 and 60 minutes, and were audio-recorded. To support rigour, the interviewer engaged in reflexive journaling following each interview.²⁵ The interview questions were developed collaboratively by the research team in partnership with community advisors and our patient partner, ensuring they reflected the priorities, language, and cultural context of the study population. The questions were grounded in the literature on culturally relevant care and informed by previous community consultations. We conducted a pilot test of the interview guide with our patient partner. This allowed us to assess the clarity, flow, and appropriateness of the questions. Based on feedback from the pilot, minor revisions were made to improve wording and ensure that the questions encouraged open, reflective responses. Each interview participant also completed an accompanying demographic sheet. Interviews focused on the importance of food for PCU patients, person-centred palliative care, menu design and customization, and barriers and solutions to culturally informed food. See Supplemental Appendix B for our Interview Guide.

In addition to interviews, art-based methods were employed as a form of data collection. This research method invited voluntary participation from any patient who encountered our recruitment table, which was set up in a visible and accessible area of the hospital. This open-format approach supported spontaneous engagement and lowered barriers to participation, particularly for individuals who might not otherwise join structured research activities. We asked interested participants to draw what food they desired to receive on their tray in the PCU versus what food they expected to show up on their meal tray. If participants were unable to draw, they were given the option to describe what they would like to draw, and a researcher drew it for them. The research team felt it was important to give participants the option of creating drawings to enhance inclusivity in our data collection process by offering multiple options for individuals to participate. Including arts-based methods as a form of data collection is especially valuable with vulnerable populations, as it has been reported that participants may be more willing to use visual methods in data elicitation on sensitive topics.²⁶ Additionally, arts-based methods empower participants to create a representation of what they consider to be the most significant aspect of their experience, giving them power in the research process.²⁷ See Appendix C for our Drawing Guide.

Finally, throughout the field observation period, the team collected all meal tray tickets, PCU menus, and other documentation on how food selections are made in the PCU. Images were taken daily of food trays featuring a variety of consistencies (regular, cut-up/bite-sized, minced, soft, and pureed) before and after consumption.

Data analysis

The research team employed thematic analysis within a phenomenological framework to explore how participants experience and understand the role of food as part of person-centred palliative care. Audio-recorded data from the interviews were transcribed by a third-party agency and managed using the qualitative software package MAXQDA 2022 (VERBI Software). The research team looked holistically at visual data sources (drawings) alongside written documents (transcripts, field notes, content analysis, demographic forms, reflexive journals) to triangulate the data in an inductive analysis guided by Braun and Clarke’s²⁵ approach to reflexive thematic analysis (RTA). RTA is an interpretative approach to qualitative data analysis that facilitates the identification and analysis of patterns or themes in a given data set using a six-phase process. While thematic analysis is often employed to identify patterns across data, it can be adapted to support phenomenological inquiry when the focus remains on participants’ lived experiences and the meanings they assign to them. This approach enabled researchers to incorporate cultural and social nuances while considering their positionality and influence on the data. All research team members brought a unique perspective to the analysis, influenced by their positionality, and acknowledged that their personal, social, and cultural backgrounds influence the perspective and interpretation of the research process. Our analysis highlights both shared and divergent understandings across participants, consistent with the phenomenological aim of uncovering the essence of experience. This approach aligns with Braun and Clarke’s guidance on the flexibility of thematic analysis across epistemological orientations, including phenomenology.²⁸

Data was collected by a diverse group of researchers, all coming from different academic backgrounds and with diverse perspectives. K.K.M., W.L., S.P., M.W., K.B., and A.H. participated in the rapid ethnography and data collection. V.W. led the analysis with support from K.K.M. and S.P. but was not involved in the data collection process (Table 1).

Table 1.

Positionality table.

Researcher initials	Positionality statement
K.K.M.	The Primary Investigator on this project, K.K.M., is a white, cisgender woman with an extensive academic background and experience using qualitative methods and working with vulnerable and ageing populations. K.K.M. holds a PhD in Public Policy and Administration and is the director of the Ottawa Valley Food Security Project, a grassroots organization focused on combating food insecurity through backyard gardening. K.K.M. is familiar with the issues facing food in palliative care and is aware of how her positionality informs her reflections on her observations in the field.
S.P.	S.P. is a cisgender woman, a Canadian immigrant of South Asian ancestry, who grew up in both the Middle East and Canada. S.P. holds a Master of Public Health degree and has experience working with vulnerable populations experiencing food insecurity.
M.W.	M.W. is a cisgender Indigenous woman in her third year of medical school. M.W. holds an honours degree in biology and nursing with experience as a registered nurse in long-term care.
W.L.	W.L. is a Chinese, cisgender woman holding a PhD in epidemiology.
K.B.	K.B. is a cisgender male of Syrian-Armenian ancestry and a first-year medical student at McGill University.
A.H.	A.H. is a cisgender woman of South Asian ancestry working towards a Master of Public Health degree.
V.W.	V.W. is a white, cisgender woman of Eastern European ancestry V.W. holds a Master of Science degree and has experience working with vulnerable populations in the healthcare system and using qualitative research methods.

All researchers are aware of their social positions and how their positionality may have influenced interpretations of participant narratives, both during data collection and analysis. The diversity in our research team brought a variety of perspectives and insights into the research project, enriching both data collection and analysis. All researchers are aware of the limitations of their perspectives and actively worked to mitigate any biases through critical self-reflection. The reflexive journaling allowed researchers to consider their positionality in the data collection process and analysis, and critically examine their interpretations, ensuring rigour and trustworthiness, as stated by Lincoln and Guba.²⁹

The qualitative data were coded by a single researcher using a systematic and reflexive approach. While multiple coders can support reliability in some research contexts, our study prioritized depth of engagement and consistency in interpretation. Guided by the research objectives, V.W. reviewed the transcripts, field notes, and reflexive journals, and independently and inductively coded the data. Codes were categorized together and reviewed by K.K.M. and S.P., and emerging patterns were identified. Notable emphasis was placed on understanding the importance of food in the PCU for patients and caregivers and how the PCU accommodates patients’ food preferences, particularly for ethnocultural minority groups, including challenges in customizing menus and meal options, and the processes used to address these issues. Data were originally analysed for content and then looked at thematically as themes were identified, refined, and defined from the observed patterns within and across data sources. Triangulation of data sources such as interviews, drawings, reflexive field notes, and peer debriefing during both data collection and analysis is among the techniques used to establish credibility.²⁹ To support rigour, we incorporated strategies such as memo writing during analysis to document developing interpretations of the data and leveraging multiple team members (K.K.M. and S.P.) reflexively to sense-check ideas and explore multiple assumptions and interpretations of the data to establish confirmability. Additionally, to enhance rigour, findings were brought back to the PCU nursing staff and food services management for member-checking and validation.

Our interpretation of the themes was guided by the Traditional Healing, Medicines, Foods, and Services framework which encouraged the team to consider the role of ethnicity and culture in shaping the experiences and preferences of patients and caregivers and what role cultural humility, competence, and safety could play in the palliative care setting given existing institutional constraints and structural biases embedded in how palliative care is understood, taught, and practiced in Western medicine.

Results

Data was obtained through a variety of sources. Participants were recruited from the Bruyère Health Palliative Care Unit and the Bruyère Health Food Services Department. Due to the sensitivity of the population and the small, specific PCU context, demographic information is not shared in this manuscript. PCU patients (n = 4), caregivers (n = 3), hospital administrators, and food services decision-makers (n = 4) were interviewed using semi-structured interviews. Drawings were completed by PCU patients (n = 7), and field note entries (n = 36) were completed by the research team. Three overarching themes were identified through the triangulation of all data sources. These included: (1) The role of food changes for patients and caregivers through the palliative care journey; (2) there is a disconnect between food services and the PCU; and (3) there is a need for having difficult conversations around the changing role of food with patients and caregivers.

The role of food changes for patients and caregivers as they progress through the palliative care journey

Food as a source of nutrition that is necessary for regaining strength and health

Early in the palliative care journey, when terminal illness diagnosis is recent and symptom management is the main priority, food served as a source of nutrition for patients who saw themselves as needing to get strong and healthy again. One patient stated, “Food is extremely important to me for many reasons, the primary one being my strength and maintaining my health” (Patient 1). We also heard from a caregiver who spoke on behalf of her mother: “She wants to get stronger and better so she can go home” (Caregiver 1). At this stage, patients and caregivers alike are interested in using food as a means of regaining strength and improving health. Food served a functional role early in the palliative care trajectory.

Food as a source of love, comfort, and memories

As illness continued to progress and patients experienced declining health, we saw a shift in the role of food to being a source of love, comfort, and memories. The wife of a patient said, “I think the food is just about comfort for him now. . . as his wife, I really kind of don’t give a darn about the nutrition” (Caregiver 2). In this stage, we often heard from patients and caregivers about wanting foods that reminded them of their childhood and their upbringing, foods that would spark fond memories and provide comfort and joy. “We grew up eating a lot, you know, corn and that kind of stuff. And, you know, I’ve always liked corn” (Patient 2). Here, patients are seeking cultural comfort that is closely linked to their identity. Patients and caregivers were seen going outside of the hospital to obtain relevant cultural foods, such as Chinese noodles, or hosting British-style tea parties, as their needs are not being met by the existing hospital menu options. This finding is further supported by the arts-based method and the inconsistencies between expected (Figure 1) versus desired meals (Figure 2).

Figure 1.

Expected foods.

Figure 2.

Desired foods.

Food as a final celebration

The next stage of the food trajectory was when a patient is almost unable to eat, and food is encouraged to be viewed as a final celebration. We spoke to a physician about one of his patients, whom the research team had seen drinking wine and eating a hamburger. The physician framed this as the patient’s last meaningful meal and told us that, at this stage, it’s important to talk with patients about “small pleasures” and “reframing coping” (Field Notes_SP). To cope with something generally refers to dealing with struggles or difficulties, but in the last days of life, when nutrition was no longer a priority, PCU staff felt that it was important to use food to create meaningful experiences and foster joy.

Food as a health hazard

The role of food in the final stage of the palliative care journey was when food became a health hazard, and patients could no longer safely eat. This was an especially challenging stage for caregivers who explained having to navigate the loss of food as a means of demonstrating love and ensuring life for the patient. A nurse explained that caregivers often insist on feeding the patient despite risks of choking or advice from providers that feeding will not slow down the process of dying (Field Notes_WL). This stage was especially impactful to caregivers from Chinese and African cultures, where food is strongly associated with life and love, and not providing a family member with culturally relevant food is almost unthinkable. A Chinese patient told us that his friends and family bring him fruits when they visit. He said that he won’t eat them by himself, but he will eat with his friends when they are around. This is common in Chinese culture, where people often bring fruits instead of flowers/other gifts when visiting patients in the hospital (Field Notes_WL). A palliative care physician informed us that physicians often see family members who view “food as love” and that they must often remind families that there are other ways to show love besides food. This is often an important and difficult conversation with family caregivers (Field Notes_KKM).

Although the food trajectory was not always linear, the general progression we observed was that food moved from a source of nutrition for strength and health to a source of comfort and love, then to a final celebration, and lastly to a health hazard (Supplemental Material).

Disconnect between food services and the PCU

The second theme we identified was a disconnect between Bruyère Health’s food services and the PCU. This theme was characterized by the lack of coherence between what we saw or heard from food service staff regarding the supposed processes around food on the PCU and what we heard from patients, caregivers, and staff about what actually takes place on the unit. For example, resource pamphlets located in the PCU indicated that Indigenous patients could access traditional Indigenous foods by speaking to a dietary technician. However, in speaking with food service staff, we discovered that there is no existing process for the hospital to provide traditional Indigenous foods, as the necessary processes to do so consistently are not in place. In the field notes, it was documented that the hospital does not have the tools to prepare traditional foods, such as an ulu (sharp Alaskan knife), which is not permitted to be stored on the unit (Field Notes_MW).

Similarly, the research team heard much about the Bedside Connect program from food services staff. This program was intended to offer meal options to palliative patients through a surveying process that took place every other day with a dietary technician. Yet, what we heard from patients and caregivers was that they had rarely encountered anyone who discussed food or menu options with them. A caregiver shared, She [the dietary technician] came, and she had a great discussion with me about choices. What are his favorites? You know, out of these 10 things, what would be the top three. . .? But that’s the only discussion about food. The only time I’ve been given options other than me approaching staff” (Caregiver 2). We also heard that patients were offered two regular menu meal choices (for lunch and dinner) plus access to an alternative menu, which offered a greater diversity of foods, including some cultural options. We learned from PCU staff that to qualify for the alternative menu, a patient had to be referred to the dietician. However, these referrals were typically limited to those experiencing symptoms that impacted their eating, meaning that many patients and caregivers were unaware that a greater variety of food options, including culturally relevant food choices, were available on this menu.

Additionally, we noticed a lack of communication among people on the PCU and food services. Several patients, caregivers, and staff mentioned filling out a change request form that allowed them to adjust their meals or to add/delete certain foods from their trays. However, many participants shared that their meal trays failed to reflect these requests despite the forms being submitted numerous times. A patient said, “They gave me a sheet to fill out about what I can’t eat, but they still serve the things I can’t eat. One night I only ate mashed potatoes because I could not eat the rest of what was on the plate. . . It makes me feel like they are not paying attention” (Patient 3). This was a significant source of frustration for both patients and PCU staff members who felt that, as front-line providers, they received the brunt of the patient’s ire when food needs and preferences were ignored.

There is a need for having difficult conversations around the changing role of food with patients and caregivers

The third theme was the need for care providers to have difficult conversations about the changing role of food with patients and caregivers. We heard from caregivers that as patients approached their last days of life and their eating habits shifted, it was often difficult for them to accept this change. Some caregivers experienced a loss of sense of self and purpose when the need to prepare food, which had been a large part of their role as caregivers, became obsolete. One caregiver said, “I’ve even felt some guilt about it [not feeding him or preparing meals] – it might sound silly, but. . . I just felt like – like a whole piece of the role of being his wife got taken away” (Caregiver 2). Physicians and nurses explained that they often had conversations with patients and caregivers to support them in navigating the changing role of food during the last days of life. They were clear that they experienced a lack of training and mentorship in engaging in these difficult conversations, which made them feel ill-equipped and unprepared. For example, a medical resident told us that conversations around food at the end-of-life were not part of their [medical] training on difficult conversations (Field Notes_KKM). An additional complexity was related to cultural discordance (care providers and patients having different ethnocultural backgrounds) and how to have culturally safer conversations around food in palliative care. A nurse explained that they have seen some Chinese families get upset if the kitchen stops sending food trays, even if the patient can no longer eat (Field Notes_WL). Another nurse shared an experience when they had a Chinese patient who had passed away, and the caregiver kept trying to feed the patient applesauce even after they had passed (Field Notes_KKM). The PCU staff expressed regret and sadness that they did not know how to address these feelings or behaviours appropriately.

Discussion

This exploratory ethnographic study looked at the role of food as part of person-centred palliative care. Findings show that the role of food changes for patients and caregivers as they progress through the palliative care journey, that there is a disconnect between food services and the PCU, and that there is a need for having difficult conversations around the changing role of food with patients and caregivers.

The knowledge that patients in palliative care experience symptoms that impact their appetite and ability to eat is represented in the literature.³⁰ However, the changing role of food in palliative care beyond nutrition has been underexplored. We filled this gap by showing that the role of food can vary greatly depending on where a patient is in their journey, whether at the stage of early diagnosis of terminal illness or during their last days of life, and the culture/traditions of the patient and their family. This study provided new insight into the many roles of food as part of palliative care and expands our understanding of how to address the different purposes of food in enriching palliative care, from terminal illness diagnosis through to the last days of life, when the purpose of eating is no longer to support nutrition. Our findings confirm existing research that food as part of palliative care can offer patients and families an important means of connection, provide comfort and memories, and enhance the overall quality of life as patients journey towards their last few days of life.³¹

For most people, food and mealtimes serve purposes beyond nutrition, playing a key role in social and relational contexts; the same is true in the palliative care space. For palliative patients, especially as they near the last few days of life, food can be a source of comfort, good memories, and joy.^31,32 We observed patients and families deriving joy from sharing platters of fresh fruit or takeout noodles brought in from a nearby restaurant. The patient might not have eaten much, but it was the shared experience and enjoyment of foods that resonated with their history and preferences that they found meaningful. There has been an exploration in the literature on the significance of “death meals” in community-based End-of-Life rituals, where food becomes a repository of meaning and memory during the final stages of life.³³ We saw food take on a similar role for some of the patients with family members holding a British-style afternoon tea party or an Italian countryside picnic for their loved ones at the PCU.

Emerging literature is clear that cultural factors play a critical role in shaping conversations between healthcare providers and their patients and caregivers.^34–37 Not only do cultural understandings of palliative care differ,³⁸ but this intersects with differing values and beliefs about the importance of food rooted in ethnocultural diversity.³⁹ Food is a powerful symbol of identity, culture, and tradition, offering a way for people to express cultural values and strengthen social connections and feelings of belonging.^40,41 This emerged strongly in our research team’s self-reflexive field notes, where members from different cultural groups noted that they felt a comforting connection to the experiences of patients and families with a shared background over preferred foods from their childhood, heritage, or homeland. Our findings align with previous work, recognizing that the interconnection of food preferences and cultural practices can significantly enhance the palliative care experience.⁴²

Acknowledging the importance of the cultural dimensions of food reinforces the need for culturally sensitive care and individualized consideration of food’s role in palliative care customized to each resident.⁴³ Insights from our study are consistent with existing literature, which emphasizes the importance of cultural safety training and mentoring care providers to confidently navigate cultural conversations, including those about food, with patients and families from non-concordant ethnocultural groups.⁴⁴ Our findings suggest that these conversations likely need to occur multiple times throughout a patient’s palliative care journey as the role of food evolves as their condition declines. Improving the training of new palliative care staff about how to approach reframing food as part of resident-centred care could better support patients and caregivers during this challenging time. For example, a conversation tool to this effect could equip healthcare providers with concrete strategies to share with caregivers that could support them in maximizing the benefits of offering patients preferred foods earlier in their palliative care journey while preparing them for the possibility of food-related risks closer to their last few days of life.

The need to have difficult conversations in the palliative care setting is well documented⁴⁵ and many training resources and conversation guides exist in this space, one of which is the All providers Better Communication skills (ABC) education program⁴⁶ developed at McMaster University. Our findings identified a lack of formal support (e.g., education and training) and informal support (e.g., mentorship arrangements) for newer palliative care providers to have difficult discussions with patients and caregivers about the evolving role of food in palliative care. Our findings suggested that discussing food during this period can be especially emotionally challenging for close caregivers, as they struggle to adapt to changes in patients’ eating habits. Such changes can lead caregivers to feel a loss of purpose or identity.^47,48 Although healthcare providers acknowledge the importance of these conversations, they often find them difficult to navigate with patients and caregivers and noted a lack of training and mentorship in this area.^49,50 This gap has been exacerbated by pandemic-related staff shortages and limited time to engage in mentorship as PCU beds are filled more quickly and care providers are seeing the acuity of PCU patients increase. Our findings highlighted a clear need for improvements in educational training for medical and nursing students, as well as ongoing support for care providers in managing these sensitive discussions about food’s changing role in palliative care, from terminal illness diagnosis through to the last days of life.

The literature on food in institutional settings is replete with references to the financial and change management challenges that can hinder the successful implementation of culturally inclusive food options in institutional care settings.^51–53 Known barriers include the cost of ingredients, resistance to change, process barriers, food safety regulations, and the availability of resources such as cultural awareness and knowledge.⁵² In this study, we heard about many of these factors being relevant to the Bruyère Health context. However, this was tempered by the vision and commitment of food services managers to operationalize meaningful reform. There was a sincere openness on the part of management to work in partnership with the research team to identify pain points related to food in the palliative patient experience, for example, in addressing the communication gaps discussed earlier, and to seek workable solutions. Researcher involvement in identifying and documenting existing barriers and areas for improvement was identified by food services management as an essential support to their ongoing internal quality improvement processes, noting that they saw evidence, particularly from the patient and caregiver perspective, as key to securing executive-level institutional buy-in for change.

This institutional change is not limited to the palliative care context at Bruyère Health. The insights shared by patients, caregivers, and staff are transferable to other urban PCUs in Ottawa, as well as to a range of institutional settings where food is regulated by the institution. These may include rural palliative care environments, long-term care homes, and facilities that serve specific populations such as Indigenous Peoples and immigrant or refugee communities. The implications of this study also extend beyond the end-of-life context of palliative care to settings focused on early life and childhood development. Institutions such as schools, where food plays a central role in child well-being during the formative years, can promote inclusion and food literacy through culturally diverse meal offerings in cafeterias and a more expansive nutrition curriculum that not only incorporates but actively values cultural diversity.^54–56

More broadly, this research can be used to inform the design and delivery of food programming in a variety of settings, including food banks, nutrition education initiatives, and Indigenous-led, land-based food knowledge sharing programs. These findings underscore the relevance of culturally responsive food practices in fostering connection, comfort, and quality of life, not only in palliative care but also across a diverse array of community and institutional contexts.

Limitations

This study was an in-depth exploration conducted at a single site with a specific food service operating system in an urban centre in Ottawa, Canada. We aimed to collect a thick description⁵⁷ of perspectives to understand a specific context; while this was achieved, we acknowledge the generalizability of our findings to other patient populations, care settings, and jurisdictional contexts. Different food service models can offer varying food options and influence consumption patterns,^58,59 potentially leading to different patient experiences regarding food choice and access. While our recruitment method enabled us to engage with almost all patients, caregivers, and staff in the PCU during the observation period, including individuals at different stages of their palliative care journey, the team did not recruit patients who were actively dying, which resulted in sample bias with patients at earlier stages in the palliative care journey being more likely to be captured. From a methodological standpoint, our use of reflexive ethnography and convenience sampling introduced potential for observer bias. This was mitigated by engaging a diverse team from many different positionalities in data collection, with the intention that each researcher would engage with the participants and see and experience the site differently.

From a theoretical perspective, our interpretivist and phenomenological lens prioritized the lived experience of palliative patients, caregivers, and staff at the Bruyère Health PCU to better understand how each individual interprets the role of food in this context and their perspectives on opportunities for improvement. While this approach deepened our understanding of participant perspectives, it may have limited our ability to critically examine the structural and systemic forces shaping the experiences.

V.W. was not involved in data collection; however, she led the data analysis. This is both a strength and a limitation as her emotional distance provided a fresh and neutral interpretation of the data, enhancing the robustness of the analysis. On the other hand, having not been involved in the ethnographic fieldwork, some nuances that may only be captured by being in the field may have been missed. K.K.M. and S.P. supported the analysis to mitigate this limitation.

Conclusion

Our research highlights the significant and evolving role that food plays in the palliative care journey, reflecting the shifting needs and emotional complexities of patients, caregivers, and healthcare providers. The evolving role of food underscores the importance of understanding and supporting the changing needs of patients and caregivers throughout the palliative care journey and highlights how small acts – such as a warm meal or sparking a food memory – can provide comfort and meaning at the end-of-life. Our findings also revealed notable challenges, including a disconnect between food services and the PCU, which, in this context, led to miscommunication and unmet dietary preferences for patients and caregivers. These challenges reflect how institutional silos can unintentionally hinder person-centred care in contexts such as end-of-life care, where individual needs and preferences are crucial. Additionally, we found that the emotional and cultural complexities surrounding food require sensitive and informed conversations between healthcare providers, patients, and caregivers, which are often hindered by a lack of formal training and mentorship. This finding supports training providers and staff on how to have challenging conversations around culture and food, and its evolving role throughout the palliative care journey. To improve the quality of palliative care, we are working in partnership with food services and palliative care staff at Bruyère Health to address communication gaps, provide staff with the tools and training needed to engage in difficult conversations, and support food services management in seeking out quality improvement initiatives that are more attuned to the diverse needs of patients and their families during this profoundly challenging time.

Future directions

The next steps of the project involve the research team working in partnership with healthcare providers, dietary staff, educators, patients, and caregivers to create an educational tool and conversation guide to support newer palliative care providers in engaging in difficult conversations with patients and families about the evolving role of food through the palliative care journey. We are also working with Indigenous researchers, advisors, and community groups to develop recommendations for food services departments serving palliative and terminally ill patients from Indigenous backgrounds on how to better meet the needs of these groups, including offering resources on where and how to source traditional and home foods in the Ottawa area.

Supplemental Material

sj-pdf-1-pcr-10.1177_26323524251364281 – Supplemental material for The role of food as part of person-centred palliative care: An exploratory ethnographic study

Supplemental material, sj-pdf-1-pcr-10.1177_26323524251364281 for The role of food as part of person-centred palliative care: An exploratory ethnographic study by Victoria Wicks, Sarisha Philip, Montana Warbrick, Wenshan Li, Khajadour Bandk, Alexandria Hector, Danielle Caissie, Peter Lawlor, Jennifer Yeung and Krystal Kehoe MacLeod in Palliative Care and Social Practice

Supplemental Material

sj-pdf-2-pcr-10.1177_26323524251364281 – Supplemental material for The role of food as part of person-centred palliative care: An exploratory ethnographic study

Supplemental material, sj-pdf-2-pcr-10.1177_26323524251364281 for The role of food as part of person-centred palliative care: An exploratory ethnographic study by Victoria Wicks, Sarisha Philip, Montana Warbrick, Wenshan Li, Khajadour Bandk, Alexandria Hector, Danielle Caissie, Peter Lawlor, Jennifer Yeung and Krystal Kehoe MacLeod in Palliative Care and Social Practice

Footnotes

Acknowledgements

The authors gratefully acknowledge the study’s participants who generously shared their time and experience for the purpose of this research. The authors also acknowledge and appreciate the support of the Bruyère Health PCU doctors, nurses, allied professionals, and dietary and food service staff for their time, insights, and support given to this project.

Author Note

K.K.M. is a Postdoctoral Fellow at Bruyère Health Research Institute and the Director of the Centre for Care Access and Equity Research (CCAER). At CCAER, we aim to improve access to culturally informed health and social care with a focus on challenging the social, structural, and systemic inequities faced by underserved communities. We use intersectionality, health equity, organizational management, and feminist political economy theoretical frameworks, and specialize in mixed methods studies that combine qualitative methods with population-level health administrative data. We prioritize community-based research approaches and integrated knowledge mobilization to involve our community partners across the entire research process. Our work is funded through grants from Health Canada, the Canadian Institutes of Health Research (CIHR), the Social Sciences and Humanities Research Council of Canada (SSHRC), the Centre for Aging + Brain Health Innovation at Baycrest, the New Brunswick Research Foundation, l’Association Médicale Universitaire Montfort, and the University of Ottawa.

ORCID iDs

Victoria Wicks

Krystal Kehoe MacLeod

Ethical considerations

This study was approved by the Bruyère Health Research Ethics Board (M16-24-020). This research involving human participants was conducted in strict accordance with the ethical principles outlined in the Declaration of Helsinki, which sets forth guidelines for research involving human subjects to ensure their rights, safety, and well-being are protected throughout the study.

Consent to participate

Informed consent to participate and be audio-recorded was obtained from all participants.

Author contributions

Victoria Wicks: Formal analysis; Project administration; Writing – original draft.

Sarisha Philip: Conceptualization; Data curation; Investigation; Project administration; Writing – review & editing.

Montana Warbrick: Data curation; Investigation; Validation; Writing – review & editing.

Wenshan Li: Data curation; Investigation; Methodology; Validation; Writing – review & editing.

Khajadour Bandk: Data curation; Investigation; Writing – review & editing.

Alexandria Hector: Data curation; Investigation; Writing – review & editing.

Danielle Caissie: Investigation; Validation; Writing – review & editing.

Peter Lawlor: Conceptualization; Validation; Writing – review & editing.

Jennifer Yeung: Conceptualization; Validation; Writing – review & editing.

Krystal Kehoe MacLeod: Conceptualization; Data curation; Formal analysis; Investigation; Methodology; Project administration; Resources; Software; Supervision; Validation; Visualization; Writing – review & editing.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data availability statement

Not applicable.

Supplemental material

Supplemental material for this article is available online.

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