Introduction
Classified as a major public health concern, cancer is a leading cause of early death in the Latin American and the Caribbean region, and the second leading cause of death in Trinidad and Tobago [ 1 – 3 ]. Common cancer treatments such as surgery, chemo- and radiation therapy can cause side effects like anemia, weight changes and malnutrition, mouth and throat issues and nutrition problems [ 4 ].
One of the nutritional problems experienced during cancer treatment is Nutritional Impact Symptoms (NIS) [ 5 ]. NIS are factors that can make it difficult to eat, negatively impacting someone’s consumption patterns and resulting in malnutrition [ 6 ]. Malnutrition can negatively impact cancer patients’ quality of life, increase postoperative complications, reduce immune response and decrease survival pre- and post-treatment [ 6 – 10 ]. Several studies reported that the most common NIS include loss of appetite, nausea and vomiting, fatigue, change in taste and smell, pain and difficulty when chewing and swallowing, sore mouth, gums and throat, dry mouth, diarrhea, and thick saliva [ 5 , 11 , 12 ]. These symptoms are common in cancer patients and their impact on nutritional status has been widely investigated globally [ 6 , 8 , 9 , 13 ].
A review of the related literature has highlighted the role of good nutrition for improved cancer-related health outcomes [ 14 , 15 ] and the impact of NIS on the nutritional status of cancer patients [ 16 , 17 ]. However, fewer studies have investigated the dietary changes patients have adopted in response to the effects of NIS [ 18 ]. Although there is some recognition of the importance of managing NIS among cancer patients [ 19 ], the need to investigate dietary changes in conjunction with NIS remains an area for further research [ 20 ]. Within the Caribbean region, there is a paucity of research on NIS and its associated issues among cancer patients. Given the limited research in this area within the Caribbean, the qualitative descriptive approach was suitable for an initial exploration of cancer patients’ experiences with NIS, nutritional challenges and dietary changes within the local context [ 21 ]. We examined NIS and dietary changes experienced by cancer patients, as well as the nutritional support and guidance they received during treatment in Trinidad.
Methods
Study setting, design and participants
Trinidad and Tobago is a twin-island state where a mix of public and private healthcare is provided. There are approximately 116 public health facilities that serve a population of 1.5 million, and cancer treatment options are offered at four of these facilities. Dieticians are available on referral at these facilities. There is an active private healthcare system, however data about those offering cancer treatments are not readily accessible.
A qualitative descriptive study of persons living with cancer was conducted April to August 2024 at a non-medical cancer support non-profit organization (CS-NPO) in Trinidad. The study was approved by the ethics committees of The University of the West Indies, St. Augustine Campus (reference: CREC-SA.2398/11/2023) and the Ministry of Health of Trinidad and Tobago (March 25th, 2024), in accordance with the revised Declaration of Helsinki 2000.
Purposive sampling was used with a goal to recruit 15 persons diagnosed with any type of cancer (at any stage) who were members of the CS-NPO. The recruitment of participants was facilitated solely by a CS-NPO liaison, who invited 83 network members to participate of whom 14 expressed an interest. Two participants opted out of participating however, as they were no longer interested in the study. The liaison finalized appointments between the research team and the participants for data collection. Participants were included according to the following criteria: (i) aged 20 to 80 years, (ii) had a confirmed cancer diagnosis within the last five years, and (iii) were undergoing treatment. No incentives were provided for participation.
Data collection and instruments
Face-to-face semi-structured interviews were conducted in private offices at the CS-NPO’s facility by six trained members of the research team [AL, BC, CR, LR, MR and SB]. All interviews were conducted outside the CS-NPO business hours. To ensure the comfort and confidentiality of the participants, only the research team members, the participants, and their companions (family members) were allowed in the rooms during the interview. Signed informed consent was obtained from each participant after discussing the study’s purpose, potential risks, and confidentiality of information.
The interview schedule developed for this study included 21 guiding questions, eight of which were adapted from a similar study that used focus groups [ 18 ]. The eight questions addressed NIS, dietary changes, awareness and availability of information and dietary support. The additional 13 questions included four demographic questions (age, gender, diagnosed cancer and stage and date of cancer diagnosis), and nine questions on the challenges and barriers to diet; cultural perspectives about food and diet; personal strategies and coping mechanisms; recommendations; and any additional comments from participants. The interview schedule was pretested through simulated interview sessions, and subsequently revised.
Each interview was conducted by two members of the research team and audio recorded with informed consent. Pseudonyms were used during recordings to protect participants’ identities. Interviews generally ranged between 60 and 120 min, depending on the participant and no repeat interviews were needed. Additional observations were recorded by the interviewers as field notes throughout the interview. Post-interview discussions among the research team members occurred after the interviews and field notes were compared for consistency. Inductive thematic saturation was used to stop data collection, as no new relevant codes and themes emerged from the data.
Data analysis
Thematic analysis was conducted, guided by the research objectives. The audio recordings were transcribed using 2024 TurboScribe© transcription software and then analyzed using Dedoose© software (v. 9.0.17; Dedoose, Los Angeles, CA, USA). Coding was conducted in pairs for each transcript, then reviewed and discussed as a group to ensure accuracy. Collectively, themes were identified from the data, then reviewed and refined to eliminate redundancies. From this, three main themes emerged.
Findings
A final sample of 12 participants from Trinidad were interviewed. Participants were all female, ranging in ages 42–67 years. The most common cancer diagnosis was breast cancer [7], followed by multiple myeloma [3] and ovarian cancer [2]. Cancer stage information for 9 participants was available: stage 1 [1], stage 2 [4], stage 3 [3], and stage 4 [1]. Participants were also exposed to numerous forms of cancer treatments, including surgery, chemotherapy, radiation, immunotherapy and hormonal drug therapy. No participants reported nutritional or dietary barriers/challenges prior to their cancer diagnosis and treatment.
Themes and sub-themes
The three key themes which emerged from the data analysis process were: Nutrition Impact Symptoms (NIS), Dietary Changes, and Lack of Information.
Theme 1: Nutrition Impact Symptoms (NIS)
Participants experienced varying NIS related to their cancer treatments, generally categorised into oral and olfactory symptoms, gastrointestinal symptoms, and fatigue (tiredness). Percentages of the symptoms experienced within each category are provided in Table 1 .
Table 1 Nutritional impact symptoms experienced by women in a Cancer support network, Trinidad Nutritional Impact Symptoms (NIS) N = 12 n (%) Gastro-Intestinal Issues 1 (8) Gum Damage 1 (8) Change in Bowel Movements 1 (8) Vomiting 1 (8) Acid Reflux 1 (8) Nausea 1 (8) Bloating 1 (8) Loss of Weight 2 (17) Loss of Smell 2 (17) Dry Mouth 2 (17) Diarrhea 2 (17) Fatigue 3 (25) Metallic Taste 3 (25) Loss of Appetite 4 (33) Constipation 4 (33) Loss/Lack of Taste 7 (58)
Table 1
Nutritional impact symptoms experienced by women in a Cancer support network, Trinidad
| Nutritional Impact Symptoms (NIS) | N = 12 n (%) |
| Gastro-Intestinal Issues | 1 (8) |
| Gum Damage | 1 (8) |
| Change in Bowel Movements | 1 (8) |
| Vomiting | 1 (8) |
| Acid Reflux | 1 (8) |
| Nausea | 1 (8) |
| Bloating | 1 (8) |
| Loss of Weight | 2 (17) |
| Loss of Smell | 2 (17) |
| Dry Mouth | 2 (17) |
| Diarrhea | 2 (17) |
| Fatigue | 3 (25) |
| Metallic Taste | 3 (25) |
| Loss of Appetite | 4 (33) |
| Constipation | 4 (33) |
| Loss/Lack of Taste | 7 (58) |
Oral and olfactory symptoms - Participants described numerous oral and olfactory symptoms during their cancer treatments. The NIS included a loss of taste and smell, a metallic/iron taste in their mouths, and gum damage. Nadia: “ Chemo took away your taste buds. So… you couldn’t enjoy the flavor of foods. ” Charm: “ Well , of course , after chemo , you don’t have any taste in your mouth. ” Judy: “ You see with the fish thing , the seafood , the seafood needs lime. Because it could smell so fresh and turn you off. ” Chloe: “ I did have a different taste in my mouth… it’s a metallic taste. Like an iron kind of taste , yes .” Lisa: “ And when I did the chemo , it does have a metallic taste on the tongue .” Mary: “ But I also have damage to my gums. Like I can’t eat pepper And the kind of spicy foods I like , I can’t eat because of the damage to my gums .”
These symptoms were reported in relation to different types of treatment, specifically chemotherapy, steroids, and antibiotic use. For these participants, food consumption was a challenge due to the various oral/olfactory NIS. This affected their willingness and ability to eat, which in turn impacted on their dietary/nutritional intake.
Gastrointestinal symptoms - Loss of appetite, bloating, diarrhea and constipation, and nausea/vomiting were the prominent gastrointestinal symptoms reported by participants in conjunction with their cancer treatments. Judy: “ In the beginning [of treatment] , I didn’t really have an appetite. I mean , I lost a whole heap of weight. ” Natie: “ I did not have any appetite. I could barely eat. I felt constantly bloated. Starting to vomit. ” Charm: “ I did get a bout of diarrhea. Because I had curry after [chemotherapy]. And then there was another case where I had constipation. ” Nadia: “ Because the chemo drugs can cause constipation .” Lisa: “ I was constipated terribly. ” Natie: “ I’ll be vomiting if I don’t eat properly [and]… uncontrollable diarrhoea .”
Similar to the loss or change of taste, the loss of appetite affected participants’ willingness to eat or consume sufficient amounts of food during treatment. Although participants were able to consume food, they reported experiencing discomfort and illness due to bloating, constipation/diarrhea, and nausea/vomiting. These symptoms resulted in weight loss for some participants, due to a change in their dietary choices and intake.
Fatigue - Fatigue was not a symptom directly related to food intake and dietary choices. However, it did impact participants’ willingness and ability to eat after treatment, and was noted as a symptom. Josephine: “ After I took the injection…I had to sleep. I wanted to sleep. And when I reached home , I just tidied up and I went straight to my bed…I said , I don’t want anything. I said , nothing , not even water. I went straight to my bed. And that had me feeling a little rough. ” Lisa: “ The first chemo session is when I feel the fatigue and the limpness and the taste , loss of taste. ” Mary: “ Tiredness is a big one for me. When you take steroids you can’t sleep. It’s a cycle with steroids. ”
Theme 2: Dietary Changes
Dietary adjustments were adopted by all participants, in an effort to mitigate NIS experienced due to treatment. These dietary adjustments were categorised into three sub areas: foods introduced, increased consumption, and decreased consumption.
Foods introduced - In an effort to improve their nutrition, participants introduced more varieties of fruits, vegetables, carbohydrates, and proteins. To combat the effects of NIS, they also incorporated fruit juices, teas, and non-dairy items into their diets. They identified a variety of foods: fruit and fruit juices (papaya, bananas, prunes and prune juice, coconut water, lime juice); vegetables (mushrooms, arugula, celery, pak choi); carbohydrates (ground provisions 1 and quinoa); animal and non-animal sources of protein (fish, lentils, chickpeas, nuts and seeds); dairy and dairy alternatives (goat milk, yogurt, almond/cashew/coconut milks); and an assortment of beverages such as nutritional supplement drinks (Pediasure and Glucerna), smoothies, and teas (soursop leaf tea, papaya leaf tea, orange peel tea).
Increased consumption - Participants also increased their intake of specific foods they already consumed. These included fruits and vegetables (caraille 2 , apples and leafy green vegetables), oats prepared using different methods (porridge, smoothies); and beverages (water and prune juice).
Decreased consumption - Participants also found it beneficial to decrease or eliminate certain foods from their diets. Many chose to reduce or eliminate meat consumption (chicken, beef, duck, goat, pork), preferring to consume fish and other seafood. Foods which were strictly reduced or eliminated included certain fruits (citrus, pineapples, cranberries); specific carbohydrates (flour-based breads and pastas, rice); dairy (cow); sugary foods and sugar sweetened beverages (soft-drinks and commercial juices); and oil and fried foods. These reductions/eliminations were based on the dietary advice received from friends and their research, and their reactions to these foods.
Theme 3: Lack of Information
Throughout the interviews, participants voiced concerns about the limited guidance and availability of dietary information during cancer treatment. Some participants did receive general guidelines about fruits, vegetables and meat consumption from their physicians. However, most reported that in-depth, tailored information was not provided based on diagnosis and treatment. Chloe: “ Doctors don’t go into your diet unless you ask and when you ask , the answer I received is you could eat anything. ” Natie: “ I think we get a diagnosis and we’re left on our own to figure it out. And we could actually be harming ourselves. ” Jane: “ The doctors , they never recommended foods. They just told you [food] Groups .”
Many participants independently sought alternative sources of information, such as consulting dieticians, conducting online research, or chatting with other cancer patients and survivors who shared what worked and did not work for them. Nadia: “ When I did my research on the Mayo Clinic , they were excellent. Because they were actually able to tell you that the chemo takes away energy. So when you are going through chemo you need to increase your calorie intake. And they recommended a lot of smoothies and yogurts and high calorie foods. ” Amy: “ We do our own research and that’s how I get to eat any proper food and what to avoid and what to do when I eat. ” Chloe: “ But speaking to other patients , you get to know things that you can do to help boost your immune system , boost your blood count , and things that would help you. ”
While participants were able to access information through these avenues, many still expressed frustration with the lack of clear explanation behind some of the dietary advice they received. Jane: “ So I’ve been trying to find out the whys of it , right? Because the literature from the doctor told me what to avoid , right? That’s the limit. But it didn’t tell me the why , right? That is what I’m trying to figure out now , [what] is the why ?”
Discussion
This study highlights the significance of nutritional impact symptoms (NIS) on dietary intake and quality of life among cancer patients undergoing treatment in Trinidad and Tobago. The findings reveal critical gaps in patient care, including the prevalence of debilitating symptoms and the lack of tailored nutritional support.
The emergence of NIS such as loss of taste, nausea, constipation, and fatigue underscores the physiological toll of cancer treatments like chemotherapy and radiation. Among these symptoms, taste alterations were the most frequently reported, leading to decreased appetite and reduced nutrient intake, which could compound recovery. These findings align with existing literature, which identifies changes in taste and nausea as significant barriers to adequate dietary intake during treatment [ 22 , 23 ]. For example, chemotherapy-induced nausea significantly affects patients’ nutritional status, contributing to psychological distress and a lower quality of life [ 23 ].
Participants reported adapting their diets to address these symptoms, incorporating healthier options such as coconut milk, steamed fish, quinoa, and smoothies, while reducing their intake of fried foods, red meat, and sugar. The emphasis on plant-based foods and local remedies, such as soursop leaf tea, demonstrates the potential for culturally appropriate interventions in improving dietary intake during treatment. Personalised nutrition focuses on tailoring dietary recommendations based on an individual’s unique taste, and lifestyle factors, providing a more precise approach to improving health outcomes [ 24 , 25 ].
A key issue identified in this study was the lack of structured and accessible nutritional guidance from healthcare providers. Dietary changes were largely influenced by independent sources, such as online research and peer advice, rather than professional guidance. Many participants expressed their frustration at having to rely on their own initiative to research and implement dietary changes, highlighting a significant gap in healthcare delivery. This concern echoes findings from international studies, which note that while personal nutrition research continues to expand, its translation into clinical practice and its utilization by healthcare practitioners lags behind [ 26 , 27 ].
The results also demonstrated the importance of patient-centered approaches that can integrate locally available foods and traditional dietary practices into cancer care. While the use of plant-based smoothies and nutrient-dense foods like chickpeas and avocado is promising, the lack of professional oversight raises questions about whether patients are meeting their overall nutritional requirements. For instance, studies suggest that while local foods can provide critical nutrients, they must be incorporated into a balanced diet designed to address specific symptoms like nausea or weight loss [ 28 ]. This underscores the need for evidence-based dietary interventions that leverage local resources while ensuring nutritional adequacy. The implementation of nutritional interventions as part of comprehensive cancer care has also been shown to improve treatment adherence, reduce complications, and enhance recovery outcomes [ 26 ].
This study had several limitations that should be acknowledged. We utilised qualitative methods with a small sample size which limits the generalisability of our findings. However, our aim was not to generalise but to provide more descriptive and exploratory insights into the experiences of persons living with cancer around NIS, diet and nutrition in Trinidad. Additionally, all participants were female and recruited predominantly from the public health systems, which may not represent the experience of males or those using private healthcare. Efforts to recruit male participants were not successful and a recommendation is to replicate this study, possibly with an all-male sample using a different sampling method to allow for comparative analysis. Furthermore, the severity of participants’ symptoms and their previous history of chronic conditions were not explored. This highlights a gap in medical information that could have been useful to the research. These should be considered when interpreting these results and considered for future research.
Conclusion
While acknowledging the limitations of our study, this exploratory work highlights the potential need for capacity-building initiatives that train and encourage healthcare professionals to include appropriate nutritional guidance as part of cancer care. Further research is needed, but integrating nutritional care into the local oncology settings as standard care protocols may help to address concerns highlighted by those experiencing NIS. The inclusion of dietary education into public health initiatives could empower patients and caregivers to make informed decisions about treatment. Such successful interventions observed in other settings could also be effective in our Caribbean context. Collaboration with organisations and NGOs involved in cancer care or support could also facilitate the dissemination of culturally relevant dietary guidelines to improve nutritional support for patients experiencing NIS during treatment.
Electronic supplementary material
Below is the link to the electronic supplementary material.
Supplementary Material 1
Ground provision is a Caribbean term used to refer to root vegetables such as yam, sweet potatoes, tarot root, etc.
Local term for bitter melon/Momordica charantia.
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Acknowledgements
We would like to acknowledge Ms. Graci-Ann Augustine and Ms. Gail Henry of Strong Minded Survivors for assisting with the recruitment of study participants for data collection. We would also like to acknowledge Mrs. Natasha Ragoonath Ramsaran, Mr. Sunil Ramsaran, and Ms. Wrennie Seedan for their support during the data collection process.
Author contributions
K.C.S, A.J.W, M.A.I., M.N. wrote and reviewed the final manuscript. B.C., C.R., L.R., M.R., S.B. conducted data collection and data curation and assisted with data analysis. All authors were involved in the ethical approval process and initial drafts of the paper. All authors reviewed and approved the manuscript.
Funding
No funding.
Data availability
The data supporting this article are included in the article. The datasets used and/or analysed during the current study are available from the corresponding author/s on reasonable request. Correspondence to Keisha Samlal or Akil Williams.
Declarations
Competing interests
The authors declare no competing interests.
Ethics approval and consent to participate
Ethical approval was granted by the Ethics Review Committees of the University of the West Indies, St. Augustine Campus (ref: CREC-SA.2398/11/2023), Trinidad and Tobago, and the Ministry of Health of Trinidad and Tobago (March 25th, 2024).
Consent for publication
Participants provided written informed consent for the collection and use of their de-identified data for publication.
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