Struggling to Eat to Survive Cancer —Lived Experiences of Eating Among Adolescents and Young Adults Undergoing High-Emetogenic Chemotherapy

Abstract

Purpose:

The purpose of this study was to provide in-depth understanding of adolescents' and young adults' (AYAs’) lived experiences of eating when they are at home between high-emetogenic chemotherapy sessions.

Methods:

The study was guided by van Manen's hermeneutic-phenomenological methodology. Eligible AYAs were 15–29 years old, diagnosed with either oncological or hematological cancer, treated with high-emetogenic chemotherapy, and Danish speaking. AYAs were recruited from three university hospital departments. Data were collected using semi-structured in-depth interviews.

Results:

Thirteen AYAs, aged 17–29 years, participated in the interviews via telephone or face-to-face in their homes. The essential meaning of the phenomenon of eating can be characterized by the overarching theme “Struggling to eat to survive” and unfolded through the following three themes: “Cooperating with a deceiving body”, “Capturing moments of eating opportunities”, and “Being loved and cared for at home”.

Conclusions:

Struggling to eat was essential for survival and a fundamental existential challenge that required reflection and consciousness. AYAs experienced their deceiving bodies as a major concern, which challenged their ability to eat and forced them to develop strategies to capture moments of eating opportunities. AYAs kept hold of doing “something” themselves to maintain the slightest control of their own lives and thereby assist clinical outcomes and cure. However, AYAs had to struggle with food and start viewing food as a friend, not an enemy.

Introduction

Eating difficulties such as changes in taste, poor appetite, nausea, and vomiting are closely associated with reduced food intake and poor quality of life among children and adolescents with cancer.^1–6 Insufficient food intake inevitably leads to malnutrition.⁷ When a person is treated for cancer, eating difficulties extend beyond poor quality of life, as malnutrition predicts poor clinical outcomes, such as greater toxicity from chemotherapy and increased susceptibility to infections and morbidity.^8–11 Chemotherapy agents are classified as high, medium, and low or minimal, according to their emetogenic potential.⁵

This study focusses on adolescents and young adults with cancer (AYAs, defined as 15–29 years of age) receiving high-emetogenic chemotherapy as their main treatment modality. Despite antiemetogenic medication, the prevalence of nausea in AYAs is reported as 40% and vomiting as 27%, which is more frequent than among the adult population.^5,12 The prevalence of malnutrition among AYAs is found to be 75%, leaving AYAs at greater risk of limited response to even the best therapies if eating difficulties are not properly managed.^13,14 A recent study of eating and feeding problems among children with cancer similarly found that poor nutritional status is linked to negative clinical outcomes such as a greater number of complications, higher relapse rates, lower survival rates, and lower quality of life.³

In addition to this, AYAs' lives are challenged by rapid physical, cognitive, psychological, and social changes.¹⁵ Adolescence can be characterized by increased independence and reduced levels of emotional control and reasoning, resulting in rebelling against rules and boundaries being pushed.¹⁵ In a recent study, Guzik et al.¹⁶ found that AYAs with cancer felt a sudden loss of control over their lives. Cancer controlled the AYAs' ability to go to school or work, their appearance and feelings, and what they could or could not do–it even controlled their hunger.¹⁶

Although the aforementioned studies suggest that cancer and chemotherapy can be distressing for any cancer patient and influence eating ability, the impact on the AYA population is evident. Joffe and Ladas¹³ stated that nutritional interventions for children and adolescents with cancer are challenging because multiple factors concurrently affect appetite and eating abilities. Therefore, understanding AYAs' eating experiences is critical to avoid malnutrition, nausea and vomiting, and to improve their quality of life and clinical outcomes. Moreover, the home setting is especially relevant as more patients today are treated on an outpatient basis. Such knowledge will critically inform the understanding of eating difficulties, and may improve AYAs' eating possibilities and, thus, their food intake.

However, to date, little is known about how eating as a phenomenon is disrupted by cancer and its treatment, and how it unfolds in the AYAs' homes.

Through collaboration, health care professionals in clinical practice and next-of-kin in the home setting may be able to accommodate eating difficulties and improve eating possibilities for AYAs. To address these challenges and remedy the current knowledge gap, the purpose of this study was to provide an in-depth understanding of AYAs' lived experiences with eating when they are at home between chemotherapy sessions.

Method

Design

The study design was guided by van Manens hermeneutic-phenomenological methodology and data were generated using individual in-depth interviews with AYAs.¹⁷

Participants

Participants were recruited by project nurses at three oncology departments at a Danish university hospital. All eligible patients in the data collection period were approached. Inclusion criteria were AYAs aged 15–29 years with a cancer diagnosis treated with high-emetogenic chemotherapy and able to read and understand Danish. AYAs were excluded if they had known eating disorders, psychological impairment, or were on psychotropic meds or appetite stimulants. Thirteen AYAs, five women and eight men with a variety in age (ranging from 17 to 29 years), in active high-emetogenic chemotherapy, were included in the study. They were diagnosed with Burkitt lymphoma (n = 1), Ewing's sarcoma (n = 2), Germinoma brain tumor (n = 1), Leukemia (ALL and AML) (n = 2), Osteogenic sarcoma (n = 1), Ovarian cancer (n = 2) and Testicular cancer (n = 4). All participants except one had no prior chemotherapy experience that potentially could influence their eating experiences. Two AYAs lived independently.

Data collection

Phenomenological, in-depth individual interviews were performed from October 2019 to May 2020 by the first author. Seven interviews were conducted as face-to-face interviews in the homes of the AYAs, while the remaining interviews were conducted as telephone interviews due to the Covid-19 outbreak and its consequences. Each interview had a specific focus on capturing the lived experiences of eating at home when treated with high-emetogenic chemotherapy. An interview guide inspired by the five lifeworld existentials–lived body, lived relation, lived space, lived time, and lived things–guided the interviews to capture lived experiences as fully as possible¹⁷ (Table 1).

Table 1.

Interview Guide Framed by the Five Existentials

Topic	Interview questions
Opening statement	Please tell me what it is like being young and getting cancer. Please tell me how you felt about eating before you got sick. Please elaborate what eating means to you now.
Lived body	Please try to tell me how you experience hunger. How do you experience your body reacting just before you eat, when you eat and after you eat? How are you experiencing changes in your body?
Lived relation	Do you usually eat alone or with others? What does it mean for you to eat with others? Please try to give me concrete examples of how you eat when you are at home.
Lived space	Please explain to me if it matters to you where you eat. How do you experience the importance of where you eat? How do you experience the difference between being at home and elsewhere?
Lived time	Please tell me about a specific day. How is eating planned in your home? What influences when you eat? How have you experienced changes from before to now?
Lived thing	How are meals prepared in your home? How are you involved in preparing and cooking?
General	Please try to tell me about a specific moment when you experienced having an appetite and a desire to eat. Please try to tell me about a specific moment when you experienced lack of appetite.

Ethical consideration

Before inclusion, participants were provided with oral and written information about the study as prescribed by the Helsinki Declaration.¹⁸ Participants signed an informed consent form before the interview, which stated that participation was voluntary and that consent could be withdrawn at any time during the course of the study. One participant was under 18 years of age, which is why the parents also confirmed their child's participation by signing the statement of consent. The study was approved by the Danish Data Protection Agency (record number 016-051-000001, 144).

Data analysis

Interviews ranging in length from 32 to 64 minutes were audiotaped and transcribed verbatim. Data analysis followed the analytical approach described by van Manen,¹⁷ beginning by repeatedly reading the interview transcripts with an open-minded attitude to the lived experience descriptions to attain an initial sense of “what was going on”.^19,20 The transcripts were attended to as a whole to try to capture the main significance of each text, and one phrase expressing that meaning was formulated.²⁰ After this, relevant meaning units were identified and the text was subdivided into clusters of meaning within and across the interviews. Each meaning cluster was analyzed and interpreted in the context of the overall understanding of the interviews, by continuously going back and forth between the clusters and the interview text as a whole. Finally, meaning clusters and identified meaning units were grouped into essential themes to capture the phenomenon of eating.²¹ The description of the essential themes were repeatedly discussed among authors.²² The analysis process is illustrated in Table 2. Examples of meaning units are presented as quotes to illustrate the meaning of the experience described. Gender and age are presented after each quote.

Table 2.

Illustrations of the Process of Analysis

Citations	Selective approach	Detailed approach	Theme
“It hurt so much when I ate. My body started sweating, I got a headache and just had to lie down. I did not feel I could be in my own body”. “I thought; what is happening? (19-year-old male) As soon as I even think of for example, meat, I get extreme nausea. Usually, I eat meat”. 'I eat because I have to. There are more times when I do not feel hungry than there are times when I feel hungry (28-year-old male).	Eating while receiving HE chemotherapy involves experiencing cruel bodily reactions.	AYAs realized that they had a fluctuating appetite due to unpredictable bodily reactions.	Cooperating with a deceiving body
	Eating while receiving HE chemotherapy requires attention and awareness.	AYAs had a failing body that made them feel out of control.
	Eating while receiving HE chemotherapy means acknowledging that usual eating patterns and preferences are invalid.	AYAs force-fed themselves when the desire to eat did not come by itself.

HE, high-emetogenic.

Findings

Struggling to eat to survive

Struggling to eat to survive was the overarching theme, embracing the young persons' lived experiences of eating when at home between treatments sessions with chemotherapy. It was described as an “out-of-control-situation” where the cancer diagnosis forced them to place their lives in the health care professionals' hands. Eating seemed to be the only thing they could manage themselves to promote their own recovery. A decrease in food intake and reluctance to eat was experienced as involving the enormous threat of hospital admission and/or pausing or reducing the dose of their chemotherapy. The young persons found the willpower to take part in the treatment by doing their utmost to eat and drink despite having an unrecognizable body and suffering the devastating side effects of treatment. They struggled with food–not against food. Willpower to eat thus became a symbol of increased chances of survival, acknowledging that potential weight loss could negatively influence the curative effect of the chemotherapy and ultimately their chances of being cured. However, eating was challenged by the presence of bodily discomfort and at the same time loss of the familiar sense of satisfaction or joy in eating. Instead, it was connected to feelings of disgust toward food or fear of feeling unwell when eating. The unreflective act of eating, as known to the participants before the cancer diagnosis, had changed to a reflective act that required conscious attention, solely for the purpose of surviving. The essential meaning of Struggling to eat to survive is unfolded through the themes Cooperating with a deceiving body, Capturing moments of eating opportunities, and Being loved and cared for “at home”. These themes cover the variations and capture the complexity of the young persons' lived experiences of eating in their home setting.

Cooperating with a deceiving body

After receiving high-emetogenic chemotherapy, the young persons experienced serious changes in their bodies that led to the experience of having to cooperate with a deceiving body. They had to acknowledge strange and unfamiliar bodily reactions that challenged their ability to eat. Dull taste buds left them with the impression that their sense of taste could no longer be trusted. Taste alterations were exemplified through descriptions of how certain food or beverages suddenly tasted different to before they received chemotherapy: “I was completely in shock. How can liver pate taste so far from liver pate?” (22-year-old male). Food they knew well was suddenly unrecognizable and all dishes seemed to taste the same. The well-known taste of their favorite dish was substituted by a bland taste. This meant that eating changed from being an enjoyable act to being an act of no value: “Whether I had a piece of rye bread or a delicious steak, it was completely the same. It tasted of nothing anyway. The meals are total indifferent now” (27-year-old female).

The young persons experienced that their bodies became hard to recognize after receiving high-emetogenic chemotherapy. Unpredictable bodily reactions such as devastating pain, headache, and cruel nausea triggered dislikes and influenced their ability to eat. They experienced not being able to recognize their failing body, which now seemed to have acquired a life of its own, eliminating eating as a nice, familiar experience. Bodily reactions could result in massive frustration, as the young persons were very alert to the crucial importance of eating. As one participant put it: “You eat even if it hurts. There have been situations where I was about to smash the plate because it hurt so much and the only thing I wanted to do was to eat just a little bit” (19-year-old male).

The young persons experienced a constant struggle between bodily disinclination and conscious inclination to eat. Conscious inclination could be experienced as increased awareness of the beneficial effects of eating on general well-being and constant attention toward eating. The situation required much stamina to withstand the act of eating, for example, expressed as: “I found my inner food fighter” (19-year-old male). Despite bodily disinclination, conscious inclination made it worth Cooperating with the deceiving body to take up the struggle with eating: “I must eat to maintain my weight, which is the whole point to eating now. If I do not eat properly and I lose weight, I cannot get as much chemo. That way, the cancer grows and it is not certain I will get as much time as I was hoping. It is almost like ‘Eat or die’” (23-year-old female).

Capturing moments of eating opportunities

It was important to capture moments of eating opportunities as the young persons' sense of appetite or desire for food was rare. Accordingly, they experienced very little desire during a day; they had to endure their embodied betrayals and develop strategies to capture the rare moments where there were eating opportunities. One strategy was to regularly perform the act of eating, meaning forcing oneself to eat despite lack of appetite to avoid being trapped in the “vicious circle of nausea” (25-year-old female) if eating was postponed. Another strategy to capture the moments of eating opportunities was an experimental approach to eating, which included being obliged to deal with and decode mixed body signals. Their own personal point of departure determined how they handled eating, and this could fluctuate during a day: “Mostly, I do not feel hunger. Even though I do not feel hungry, I must eat something. I see it as my duty” (26-year-old male).

Other strategies to capture moments of eating opportunities while experiencing a body that was letting them down were distraction, for example, watching television or Netflix, “having an encouraging conversation” (18-year-old female), or reacting immediately to the small glimpses of desire that emerged. These desires appeared as an unpredictable bodily feeling of a craving for “something” that immediately popped up as an unexpected urge for specific food items. The desires could occur because the young persons were visually exposed to food, but they could also suddenly appear out of the blue. Adapting to these desires meant they had a chance to get something to eat, as this could be their only chance to eat on a given day. Accordingly, these desires were experienced as decisive and hard to define. Their elusive character could give rise to distress and potentially lead to conflict with their next-of-kin, as illustrated in the quote: “Yesterday, when I stumbled upon some elderflower juice, I was convinced that I wanted some. However, it can be very hard to find out what you want. In this case, it is frustrating that your family does not know what you want, because you know that you need something. You just cannot define what it is specifically” (27-year-old female).

Being loved and cared for “at home”

The young persons experienced the need to be loved and cared for “at home”, which created an almost involuntary dependence on their next-of-kin. The treatment and side effects forced them to move out of their normal living settings (e.g., their own flat), thus sacrificing the independence and self-determination they had before the cancer diagnosis. Moving into the homes of their parents or next-of-kin was a way of gaining confidence and support to live through the course of treatment and eating difficulties.

Being “at home” implied freedom and flexibility. To be able to eat whatever they preferred, whenever and wherever, positively influenced their eating abilities, as illustrated in this quote: “We put buns in the oven when we wake up. There are no fixed meal times. We eat when my inner eating-clock ticks” (23-year-old female).

Being in familiar surroundings at their next-of-kin's or just being at home in their usual environment with usual routines and eating norms were ascribed great importance. Having meals together as a family revived substantial memories from life before the cancer diagnosis and encouraged eating, regardless of lack of appetite or nausea. Interactions around the table could help the young person to be distracted from nausea or uneasiness, making it easier to eat.

The young persons experienced invaluable support from next-of-kin in their attempt to cooperate with a deceiving body in their struggle with food. They could experience that their next-of-kin took charge of the eating task and lovingly pushed them to eat; for example, by making phone calls from work to ensure they had had lunch, giving advice (to walk around while eating), cutting the meals into small bites or feeding them with a fork as if they were babies. Moreover, they experienced their next-of-kin taking charge of the cooking or buying them take-away food: “I only eat because my parents lovingly force the food into my mouth and make sure that the portion sizes fit my tiny appetite. They help me by cooking or tempting me with a takeaway” (27-year-old female).

The helpfulness of next-of-kin seemed a safe and welcome gesture that the young persons needed to embrace: “I simply need a loving kick in my ass” (29-year-old female). Moving back home entailed a concomitant dependence on parents' food choices for good or bad, and the young persons experienced loss of self-determination when their parents' eating habits differed from their own. However, they needed to accept this dependency on their next-of-kin after their cancer diagnosis.

Discussion

The main finding of this study was AYAs' struggle to eat to survive, which was essential in their lived experiences of eating when they were at home between chemotherapy treatment sessions. To be diagnosed with a serious disease during adolescence or young adulthood enhanced their feeling of being out of control and their feeling of putting their lives in the hands of others. The existential aspect of eating has rarely been brought to attention in previous research in adolescent and young adult oncology.

A significant finding was that AYAs were firmly convinced that eating was the only thing they had left to control. Everything else was in the hands of others. They recognized a willpower to eat despite having an unrecognizable body and enduring the devastating side effects of treatment, knowing that decreased food intake could affect their chances of surviving. Congruent with these findings, a qualitative study by McCarter et al.²³ found that eating was associated with survival among adult head and neck cancer patients. Additionally, they also showed that eating was “like fighting the fight against the fight”.²³

In her phenomenological research, the British philosopher Havi Carel enhances our understanding of how an unreliable body transforms in an existential manner and how the body changes over time when illness interferes. For example, the ill person may have no interest or desire, but is obliged to undergo existential changes due to different circumstances after a cancer diagnosis. However, the uninvited guest, the illness, forces the person to modify and reexamine bodily habits, existential expectations, experiences of their body, space, and time, and finally how to be in the world.^24,25 Carel states that the body's limitations appear to be a practical concern, but they become an existential limitation because of the constraints they ascribe to life possibilities.^25,26

Our findings also highlighted that AYAs found that they had to cooperate with a deceiving body that had a life of its own, and that forced them to adapt to a new familiarity with eating. This can be further understood in relation to Merleau-Ponty's concept of the acquisition of habit as restructuring and reviving the corporal schema.²⁷ Because of the strange and unfamiliar bodily reactions, AYAs are challenged in relation to their usual unreflective being in the world. Previous benchmarks on eating still exist in the immediate time following a cancer diagnosis, but the body's capacity to fulfill these normal standards is disordered. The ability to act unreflectively on the basis of habits no longer works as it had done in familiar situations.²⁷

In accordance with Merleau-Ponty, AYAs in our study were no longer able to control their bodies, illness, or treatment.²⁷ Our findings showed that AYAs found their inner food fighter to cope with their eating difficulties and capture moments of eating opportunities. In this way, they integrated the following strategies to capture moments of eating opportunities in response to their deceiving body: forcing themselves to eat without feeling appetite or desire; having an experimental approach to eating; reacting to small glimpses of desire; and distracting themselves while eating. These strategies can be seen as ways of regaining meaning in an unaccustomed situation. Developing strategies is not unprecedented. In a study of children's and parents' experiences of food intake when undergoing chemotherapy, Gibson et al.²⁸ found that parents developed creative eating strategies to encourage their children to eat. They found, for example, that interactions between family members at mealtimes improved children's food intake and that children in their study experienced cravings that immediately needed action.²⁸ Our study also adds to the literature by showing similar strategies to capture moments of eating opportunities such as distraction while eating or reacting to glimpses of desire as experienced by the AYAs.

Our findings showed that meals were associated with AYAs' feelings of loss of self-determination and increased dependence on their next-of-kin as the treatment and its side effects forced them to move out of their normal living settings and into the homes of their parents or next-of-kin. It implied having meals together as a family that, regardless of appetite or nausea, encouraged eating. This is further confirmed by Holm and Kristensen,²⁹ who studied the phenomenon of mealtimes in people's everyday life. They identified mealtimes as essential to human social life and as important social events with family and friends. Originally, eating was associated with relationships with others.²⁹ By contrast, Koshimoto et al.³⁰ illustrated that adult cancer outpatients receiving chemotherapy often experienced conflict over food with people around them and mealtimes often led to conflicts with family members. However, the next-of-kin undertook a new important and supportive role crucial to the AYAs' ability to eat where they nudged them to eat, fed them with a fork, and took charge of the cooking.

In Van Manen's conceptualization, the lifeworld perspective as a whole changes when the body changes.¹⁷ The lived body in this study affected the other dimensions of the lifeworld such as the lived relation. The lived relation between the AYAs and their next-of-kin therefore took on a different essential meaning than before the cancer diagnosis. However, our findings showed that AYAs appreciated helpfulness by acknowledging the necessity of the new role the next-of-kin had to take. These findings are in line with existing knowledge regarding social support from family, where parental assistance in everyday tasks such as providing food in the home setting was found to be helpful and that parents were generally found to be the most helpful.³¹ Studies found that AYAs appreciated their families as the most important source of support and reported that cancer strengthened family ties.^31–34 Furthermore, Gibson et al.²⁸ and Fleming et al.³⁵ showed that parents were very mindful of how they approached the issue of eating with their child during treatment, actively seeking to employ positive feeding practices to maintain a good relationship. Thus, these findings highlight the importance of utilizing the benefits of the AYA–next of kin relationship if the next-of-kin are to be effective supporters in the AYA's eating abilities. However, more research is needed to fully understand the next-of-kin's perspectives on AYAs‘ eating difficulties to further inform health care professionals and meet families' specific needs.

Strengths and Limitations

A phenomenological study is concerned with gathering in-depth knowledge about the phenomenon that is studied rather than obtaining breadth in demographics and a large study sample.^17,20,36 Accordingly, we included 13 AYAs with variations in age, gender, and diagnosis. However, all AYAs were from the same cultural background. As cultural background may influence eating cultures and traditions, the findings of the present study may be limited due to contextual matters. Throughout the study, we sought to keep hold of our preunderstandings, assumptions, and presuppositions with an ongoing open dialog between us. Here, we challenged our preunderstandings to minimize its influence on our findings, as suggested by van Manen.¹⁹

Phenomenological interviews require the skills of active listening and interpretation of nonverbal cues. As six of the interviews were conducted over the telephone due to the Covid-19 pandemic this may have been hard to accomplish. On the other hand, remote communication is suitable with this age group as they are familiar with it and telephone interviews could allow AYAs to discuss sensitive topics more freely than they would have done face-to-face.³⁷ However, we identified no obvious differences in experiences. Another strength of this study was that it was in-depth in nature and had a strong theoretical underpinning, which made it possible to understand the meaning of their experiences rather than merely describing it.

Conclusion

This study offers a deep and thorough understanding of the essential meaning of eating among AYAs receiving high-emetogenic chemotherapy who were at home between chemotherapy sessions. Our findings revealed that struggling to eat was a fundamental existential matter requiring reflection and consciousness, and that it was thus essential for surviving. Furthermore, we found a duality between struggling to eat and eating to fight cancer, and eating was AYAs' way of gaining some kind of control.

The deceiving body was a major concern influencing the AYAs' being in the world. Their body challenged their ability to eat and forced them to develop strategies to capture moments of eating opportunities, such as forcing themselves to eat without feeling appetite or desire, having an experimental approach to eating, reacting to small glimpses of desire, and distracting themselves while eating. They found their inner food fighter to deal with the abruption from unreflective eating and to underpin the aim of regaining control. In the process of complying with a changed body that tripped up their fight against cancer by challenging their ability to eat, the next-of-kin proved to be an invaluable support, through nudging, caring, and taking charge.

Findings from our study are highly relevant for clinical practice. We have highlighted the importance of acknowledging that eating while being treated with high-emetogenic chemotherapy is individual in nature and affects the entire lifeworld. It is very relevant for health care professionals providing care for the AYAs to know about this struggle and how eating may be hampered by the experiences of the body's deceiving reactions. Knowing strategies to capture eating opportunities, willpower, and the important role of AYAs' next-of-kin are crucial for preparing AYAs and their families for what awaits them in the course of cancer treatment.

Footnotes

Acknowledgment

We would like to take the opportunity to express our gratitude to the AYAs for their participation in the study.

Author Disclosure Statement

No competing financial interests exist.

Funding Information

The Danish Cancer Society [grant number R210-A12911] and Aarhus University, Department of Public Health deserve great acknowledgement for providing financial support for this work and making this important study possible.

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