https://doi.org/10.1007/s00520-023-07787-3 RESEARCH
Understanding the patient and family experience of nutrition and dietetic support during childhood cancer treatment
Emma Clarke1 · Gemma Pugh2 · Eveline van den Heuvel3 · Mark Winstanley3 · Andrew C. Wood3 · Stephen J. Laughton3 · Amy L. Lovell1,3
Received: 1 November 2022 / Accepted: 27 April 2023
© The Author(s) 2023
Abstract
Purpose This study aimed to understand the experience of families caring for a child with cancer in New Zealand (NZ) who received nutrition and dietetic support during cancer treatment and their preferences for the delivery, format, and timing of nutrition information.
Methods Childhood cancer patients and their families (N = 21) participated in a mixed-methods study at a specialist pae- diatric oncology centre in Auckland, NZ. Before the semi-structured interview, participants completed a questionnaire capturing demographic, disease, and treatment characteristics of their child, their nutrition concerns, and their information needs. Quantitative data were described, and qualitative thematic analysis of the semi-structured interviews was performed using NVivo data analysis software.
Results Eighty-six percent of participants indicated they had concerns about their child’s nutrition during treatment. The most common concerns were anorexia, vomiting, and weight loss. While many were happy with the quality of the nutrition support received, one-third of the patients wanted more support. Four key themes emerged from the interviews: (1) patients experience significant and distressing nutrition challenges; (2) patients and families have mixed perceptions of EN; (3) there are gaps in the current nutrition support system for inpatients; and (4) a desire for more accessible nutrition support.
Conclusion Childhood cancer patients and families experience significant and distressing nutrition challenges during treat- ment. Standardising information given to patients and their families may optimise nutrition support for paediatric oncology patients and reduce the discordance between families and health professionals. Future implementation of a nutrition decision aid in this population is warranted.
Keywords Childhood cancer · Patient perspectives · Nutrition support
Introduction
A cancer diagnosis and treatment can significantly impact a child’s ability to maintain adequate dietary intake and nutri- tion [1, 2]. Appetite suppression, vomiting, nausea, mucositis, changes in taste and smell, and pain are side effects of anti-cancer therapies that can negatively affect a child’s nutrition status [3,
4]. Maintaining good nutrition status throughout cancer treat- ment is crucial for children with cancer [5], as poor dietary intake impacts growth and development, may result in excessive weight gain, decreased tolerance to chemotherapy, and increased risk of infection [6, 7]. Therefore, it is unsurprising that nutrition status is an independent predictor of survival [5].
With many decisions about their child’s treatment being out of their control, feeding their child during treatment is one of the few areas of care parents and families feel they can influence [2, 8]. However, this can significantly strain family relation- ships and child eating practices. For example, treatment-related weight changes can prompt negative feeding practices such as increasing pressure to eat or compromising diet quality to maintain intake [2, 8]. As parents are highly motivated to seek information about nutrition and health [2, 8], providing reliable and trustworthy nutrition support during treatment is necessary.
* Amy L. Lovell [email protected]
1 The University of Auckland, Private Bag 92019, Auckland 1142, New Zealand
2 National Child Cancer Network, Te Aho O Te Kahu Cancer Control Agency, Wellington, New Zealand
3 Starship Blood and Cancer Centre, Te Whatu Ora, Te Toka Tumai, Auckland, New Zealand
Patient and family experiences with nutrition during treat- ment have been documented [2, 9–13], with most studies investigating patient and parent perceptions of food intake [9, 10, 12] or strategies used by parents to cope with changes in intake [2]. Two studies in Australia and America have explored patient and family perceptions of nutrition support, such as enteral nutrition (EN) and parenteral nutrition (PN) [11, 13]. Given that optimising nutrition status has far-reach- ing benefits on treatment tolerance, adherence to treatment schedules, and improved quality of life [6, 7], understanding the experience of patients and their families with nutrition as supportive care during treatment is warranted. This study aimed to understand the experience of families caring for a child with cancer in NZ, who have received dietetic support during cancer treatment and their preferences for the deliv- ery, format, and timing of nutrition information.
Methods
SettingThis study was conducted at a specialist paediatric oncology centre in Auckland, NZ. Treatment for childhood cancer is coordinated with one other specialist centre, and fourteen shared care centres around NZ. Childhood cancer patients aged 0 to 15 years receiving treatment (which could include chemotherapy, radiation, immunotherapy, or surgery alone or in combination with other modalities) and their families were invited to participate in this study.
Study design
The study used a mixed methods design with eligible par- ticipants identified through discussions with the ward charge nurse and the patient’s assigned nurse. Patients who were classed as palliative, had been recently diagnosed and were not yet ready to receive additional information (at the direc- tion of medical staff), or were deemed too unwell to partici- pate were excluded. The inclusion criteria were otherwise kept broad for patients and their families due to the hetero- geneity of this population.
Semi-structured interviews and questionnaire completion was facilitated by one researcher (E.C.) between January and March 2022. The interviewer (E.C) was not involved in the clinical care of participants. Parents or guardians provided written, informed consent before completing the questionnaire and interview. If the patient was older than 6 years, assent was also obtained. The study received ethical approval from the Auckland Health Research Ethics Committee (AHREC) on 20/12/2021 (AH23378). Institutional approval was granted by the ADHB Research Office (Project number: A + 9288).
Data collection
Participants completed a Health and Nutrition Questionnaire adapted from the literature [14–16] and a semi-structured interview. The questionnaire collected data on the patient’s demographics and diagnosis [17], eating behaviours [18, 19], nutrition education and support received [17], symptom assessment [20], and requirements for nutrition support. The questionnaire was completed via direct entry on an iPad or computer using REDCap electronic data capture hosted by The University of Auckland [21, 22].
The Behavioural Paediatric Feeding Assessment Scale (BPFAS) is a parent-reported questionnaire that gathers infor- mation on mealtime behaviours [18]. Only questions related to child eating behaviours were included, which assessed fre- quencies of behavioural feeding problems and whether parents considered these a problem [18]. Five items from the food responsiveness sub-scale of the Child Eating Behaviour Ques- tionnaire (CEBQ) were also included [19]. These additional questions aimed to capture behaviours of overeating.
The interviews followed a semi-structured interview guide (Supplementary Table 1) and were audio-recorded. Interviews were conducted until thematic saturation on current nutri- tion support, effectiveness, and requirements for support was achieved. Thematic saturation was determined by repeated themes and an absence of new themes in subsequent inter- views. Interview recordings were transcribed verbatim.
Analysis
Quantitative data were evaluated using SPSS (SPSS Sta- tistics for Windows Version 26, IBM Corp., Armonk, NY, USA), and descriptive statistics reported. Continuous data were presented as mean (SD) and categorical data as fre- quencies (percentage). Qualitative transcripts were coded line-by-line and analysed using NVivo, 2022, v.12 (QSR International Pty Ltd., Victoria, Australia) using Braun and Clarke’s [23] thematic analysis framework. A multilevel consensus coding methodology was completed to ensure accurate coding and thematic analysis. Seventy-one percent of all interviews (n = 15) were coded independently by two investigators (E.C and G.P), who then reviewed their analy- sis and discussed any discrepancies.
Results
ParticipantsBaseline characteristics are displayed in Table 1. Twenty-one participants completed the Health and Nutrition Questionnaire and a semi-structured interview. Most (48%) were a family
member of a child with cancer between the ages of 2 and 4 years. Most (48%) children were of NZ European ethnic- ity, and one in ten children (9%) were of self-defined Māori ethnicity. Diagnoses were recorded according to ICCC-3 clas- sification [24], with acute lymphoblastic leukaemia (ALL) and Wilms tumour being the most common diagnoses (29%
each). Ninety-five percent of children (n = 20) were receiving chemotherapy at the time of study participation.
Health and nutrition questionnaire
Eighteen (86%) participants reported being concerned about their child’s diet or nutrition during treatment (Table 2), with the most common concern being anorexia, or loss of appetite (62%), followed by vomiting (29%), and weight loss (24%).
Fourteen (67%) participants rated nutrition as extremely important during childhood cancer; however, only 8 (38%) participants reported nutrition being addressed at every clinic or hospital visit. Over half (52%) of the children had experienced weight loss between 0 and 5 kg since diagnosis, of which 48% (n = 10) of parents found worrying.
Most (67%) participants reported changes in their child’s diet following diagnosis (Supplementary Table 2).
Common dietary changes included a focus on food safety (29%), deterioration in intake (21%), and an impact on the types and amounts of foods accepted (21%). All partici- pants (100%) had received nutrition care or advice from the hospital dietitian, and seven (33%) reported receiv- ing nutrition information from their nurse specialist. The types of advice provided by their health care team focused on food safety (62%), general healthy eating for cancer (62%), and how to gain weight (24%). Most participants (85%) rated the nutrition advice from the dietitian as help- ful (ranging from somewhat, very, or extremely helpful) and that the dietitians were responsive to their queries.
Reasons for rating advice from the dietitian as ‘some- what helpful’ included a resulting lack of knowledge on appropriate low-risk foods, that the focus appeared to be on weight maintenance rather than diet quality, and that they were only contacted when nasogastric (NG) feeding was recommended.
One-third (n = 7) of participants reported that they would have liked to have received more support from their dietitian when their child was on treatment. Suggestions for further support included online weekend support, meal plans/family meal ideas when at home, a list of ‘safe’ foods, early support to prevent oral aversions and poor eating behaviours, and general lifestyle advice.
The Memorial Symptom Assessment Scale (MSAS) [25]
was mostly parent-completed (Table 3). The mean (SD) number of symptoms experienced was 6.3 (4.2). Symptom prevalence in the last week experienced by most children included as follows: lack of energy (71%), pain (62%), lack of appetite (62%), diarrhoea (57%), nausea (57%), vomiting (48%), irritability (48%). Of these, symptoms such as lack of appetite, nausea, and vomiting directly impact nutrition.
Other symptoms reported as less frequent within the last week but can indirectly impact nutrition include anxiety, depression, or pain impacting desire to eat or low energy/
stamina to complete meals. Over half (55%) of the symp- toms in the last week were rated moderate to very severe in all children who experienced them. Weight loss and
Table 1 Participant characteristics and clinical information of family and children with cancer who completed a nutrition questionnaire and semi-structured interviews (N = 21) when attending a specialist paedi- atric oncology centre in New Zealand
ALL, acute lymphoblastic leukaemia; AML, acute myeloid leukaemia;
BMT, bone marrow transplant; CNS, central nervous system
Characteristic Total (%)
n = 21 Completed questionnaire
Child with cancer
Family member of child with cancer 1 (5) 20 (95) Age of participant completing questionnaire
12–15 years 18–30 years 31–40 years 41–50 years
1 (5) 3 (14) 11 (52) 6 (29) Child age
< 2 years 2–4 years 4–8 years –12 years 12–16 years
3 (14) 10 (48) 2 (9) 4 (19) 1 (5) Child main ethnicity
NZ European Māori Pacific Peoples Asian
Middle Eastern/Latin American/ African Other
10 (48) 2 (9) 1 (5) 7 (33) 0 (0) 1 (5) Child’s diagnosis
ALL Wilms Neuroblastoma
CNS tumour — medulloblastoma Non-Hodgkin’s lymphoma AML
Osteosarcoma CNS tumour — glioma Other
6 (29) 6 (29) 4 (19) 0 (0) 2 (9) 3 (14) 3(14) 1 (5) 1 (5) Current treatment
Chemotherapy Radiotherapy Surgery: planned Surgery: completed Between treatment cycles Immunotherapy BMT
20 (95) 3 (14) 1 (5) 6 (29) 1 (5) 2 (9) 1 (5)
constipation caused high levels of distress and severity, whereas nausea, vomiting, and lack of appetite were more likely to be rated as severe than distressing.
Semi‑structured interviews
Twenty-one (n = 21) semi-structured interviews were con- ducted with childhood cancer patients and members of their families in person (n = 19) or via telephone (n = 2). These included three patients and twenty-three family members.
The emerging themes were organised into four categories:
(1) patients experience significant and distressing nutrition challenges; (2) patients and families have mixed perceptions of EN; (3) there are gaps in the current nutrition support system for inpatients; and (4) a desire for more accessible nutrition support. Sub-categories for these themes and rep- resentative quotes are outlined in Table 4.
Theme 1: Patients experience significant and distressing nutrition challenges
Most patients experienced challenges related to limited dietary intake or fussy eating, which caused frustration and distress. Managing taste changes, difficulties communicat- ing with young children, and accepting that weight loss was inevitable were all significant challenges during treatment.
Yeah, I’d kind of eat one food, throw up and I would just – I couldn’t even think about the food, let alone like look at it. So, for a little bit I went off potatoes. — Interview 9 (CCS: male, osteosarcoma, 12–15 years) Fussy eating encompassed food aversions, periods of inadequate intake, poor diet quality, and missed feeding milestones. While some families described being able to cope with these challenges and viewed it as a phase, other families described how it significantly impacted their child’s healthy eating practices.
Usually [healthy eating is] quite important to me. But, right now it’s like, he’s alive. And we’re just trying to keep him from losing weight so the fruits and veggies can, you know, be put on hold, unless he feels like it. — Interview 8 (Mother: male, Wilms tumour, 2–4 years)
Theme 2: Patients and families have mixed perceptions of enteral nutrition
Placement of NG tubes for feeding was common, with fami- lies having a mixed view of their benefits. Some parents were positive about the role of NG feeds for maintaining weight and providing optimal nutrition. However, initiating NG feeding was often communicated to parents as a sug- gestion rather than an instruction or part of the treatment protocol, leading to confusion about their necessity.
I think [the NGT] shouldn’t be suggested; I think it should be informed that you have to have it […] yeah,
Table 2 Nutrition concerns of family and children with cancer who completed a nutrition questionnaire and semi-structured interviews (n = 21) when attending specialist paediatric oncology centre in New Zealand
NGT, nasogastric tube
Total (%) n = 21 Any concerns about child diet or nutrition
No Yes 3 (14)
18 (86) Most common concerns
Anorexia Vomiting Weight loss
Meeting nutrient needs
NGT dependence/difficulties weaning Oral or food aversions
Increased appetite due to steroids
13 (62) 6 (29) 5 (24) 3 (14) 2 (9) 2 (9) 1 (5) How would you rate the importance of nutrition?
Extremely important Very important Somewhat important Not so important Not at all important
14 (67) 6 (29) 1 (5) 0 (0) 0 (0) Nutrition discussed during clinic/hospital visit
Always Usually Sometimes Rarely Never
8 (38) 10 (48) 1 (5) 1 (5) 1 (5) Weighed for day stay or inpatient treatment
Always Usually Sometimes Rarely Never
17 (81) 4 (19) 0 (0) 0 (0) 0 (0) Weight loss since diagnosis
No: weight hasn’t changed No: weight has increased Unsure
Yes
5 (24) 5 (24) 0 (0) 11 (52) Weight loss since diagnosis
0–5 kg
> 5 kg 8 (38)
3 (14) How does your child’s weight loss make you feel?
Not worried Don’t mind Worried Very worried
0 (0) 1 (9) 6 (55) 4 (36) Noticed muscle loss
Yes — a lot Yes — a little No change Unsure
7 (33) 5 (24) 7 (33) 2 (9)
no, it’s more reassuring to know that he’s getting intake. — Interview 3 (Father: male, ALL, 2–4 years) Reasons for hesitancy included fear of complications, developing a reliance on EN, and disruption to oral intake.
Two families delayed NG insertion as they felt they had not received enough explanation of the mechanism of feeding, the benefits of EN, and the proposed duration of use.
I knew we were probably gonna reach [inserting an NG tube] at a point, but I was trying to stall it for
as long as I could. — Interview 19 (Mother: female, osteosarcoma, 12–15 years)
We need to be guided by, yes, okay, cool, we’re gonna be on the tube. She’ll need that for probably a week.
And then she’ll probably go back to feeding…… And then, this is how we introduce solids into the mix as well,” is sort of, you know, how I would imagine that would sort of get – get there. — Interview 10 (Mother:
female, CNS tumour, < 2 years)
Table 3 Parent-completed symptom assessment using the Memorial Symptom Assessment Scale (MSAS) [21] conducted when attending spe- cialist paediatric oncology centre in New Zealand (n = 21)
a Number (%) of patient rated as moderate to very severe intensity
b Number (%) of patient rated as a lot to almost always frequency
c Number (%) of patient rated as quite a bit to very much distress
Symptom Prevalence (%)
Overall, n (%) Severity: Mod-V
severe, n (%)a Frequency: a lot — almost
always, n (%)b Distress: quite a bit — very much, n (%)c
Lack of energy 15 (71) 14 (93) 3 (20) 4 (27)
Lack of appetite 13 (62) 13 (100) 3 (23) 4 (31)
Pain 13 (62) 13 (100) 2 (15) 6 (46)
Nausea or feeling like you could vomit 12 (57) 11 (92) 2 (17) 5 (42)
Diarrhoea or loose bowel movements 12 (57) 12 (100) 3 (25) 4 (33)
Vomiting 10 (48) 9 (90) 3 (30) 5 (50)
Feelings of being irritable 10 (48) 9 (90) 2 (20) 2 (20)
Hair loss 10 (48) 9 (90) - 4 (40)
Feelings of sadness 9 (43) 8 (89) 1 (11) 2 (22)
Feeling of being drowsy 9 (43) 9 (100) 2 (22) 2 (22)
Feeling of being nervous 8 (38) 8 (100) 0 (0) 4 (50)
Worrying 7 (33) 5 (71) 0 (0) 1 (14)
Change in the way food tastes 7 (33) 3 (43) - 0 (0)
Skin changes 7 (33) 7 (100) - 1 (14)
Dry mouth 6 (29) 5 (83) 0 (0) 0 (0)
Weight loss 5 (24) 4 (80) - 3 (60)
Itching 4 (19) 4 (100) 1 (25) 2 (50)
Mouth sores 4 (19) 4 (100) - 2 (50)
Difficulty sleeping 4 (19) 4 (100) 1 (25) 2 (50)
Dizziness 3 (14) 3 (100) 0 (0) 1 (33)
Difficulty swallowing 3 (14) 3 (100) 0 (0) 0 (0)
Constipation 3 (14) 3 (100) - 2 (67)
Numbness/tingling 2 (10) 2 (100) 1 (50) 0 (0)
Problems with urinating 2 (10) 1 (50) 0 (0) 0 (0)
Difficulty concentrating or paying attention 1 (5) 1 (100) 1 (100) 0 (0)
Cough 1 (5) 0 (0) 0 (0) 0 (0)
Shortness of breath 1 (5) 1 (100) 0 (0) 0 (0)
Swelling in arms or legs 1 (5) 1 (100) - 0 (0)
‘I don’t look like myself’ 0 (0) 0 (0) - 0 (0)
Table 4 Emergent themes from semi-structured interviews with childhood cancer patients and family members (n = 21) on their needs for nutri- tion support and dietary management during treatment conducted when attending specialist paediatric oncology centre in New Zealand
Number of respondents (N = 21)
Quote
Theme 1: Patients experience significant and distressing nutrition challenges
Families experience frustration and distress associated with weight and dietary changes Frustration and distress associated with weight and dietary
changes 9 Yeah, I am actually anxious like, you know, when it comes
to mealtime because he doesn’t have – he doesn’t have an appetite. — Interview 5
Weight loss challenges/accepting weight loss as inevitable 14 Cause he was like 38 kilos when we came in in September last year, and then by the time we went – left to go home the first time we could go home, he’d lost probably I think he went down to nearly 31 kilos. So he had lost quite a bit of weight, so I’m quite glad that he came in with a bit of weight behind him — Interview 1
Managing changing tastes 5 Their tastebuds change really quickly so, that’s the hardest
part is that she’ll really like something one week and the next week she’s like “No. Absolutely not.” — Interview 19 Struggle to communicate with child 6 Like a three year old has all the will in the world but it – it’s
often quite difficult to explain about food and the importance for nutrition. — Interview 21
Struggling with nutrition at home 6 It was just completely draining and depressing spending my whole days trying to feed her through the NG and she’d just vomit it all up and not gain any weight. — Interview 18 Fussy eating is common and creates negative feeding practices
Fussy eating challenges -
Child missing milestones 5 We were about to start doing solids at home because she was,
you know, almost coming up 6 months and showing signs of being interested but then we came in and it just hasn’t hap- pened. — Interview 10
Food aversions 15 Yeah, I’d kind of eat one food, throw up and I would just – I
couldn’t even think about the food, let alone like look at it. — Interview 9
Periods of inadequate intake 9 When he first got diagnosed and started chemo, he didn’t eat
for about nine days and he was vomiting a lot, like a lot dur- ing every day. — Interview 1
Poor diet quality 10 I would say sugar’s definitely one of the, you know, conveni-
ence food that’s easy to – or I’m making things sweeter just to keep him more interested. — Interview 13
Negative feeding interactions -
Child dictates diet 4 We have found we’ve tried to indulge her whims to like she will
– she’ll randomly say “oh, I really feel like this.” And ‘cause you’re so conscious of trying to get food into her you’re like
“okay!” — Interview 19
Food as a reward 2 But then you also need to reward these kids after treatment,
so you just give them what they really want during that short period of time. — Interview 4
Pressure to eat 3 there’s a lot of pressure on you to try and force them to eat, you
know […] And you’re trying to sort of get this food into them and fatten them up or whatever. — Interview 19
Prioritising intake over diet quality 13 Usually [healthy eating is] quite important to me. But, right now it’s like, he’s alive. And we’re just trying to keep him from losing weight so the fruits and veggies can, you know, be put on hold, unless he feels like it. — Interview 8 Theme 2: Patients and Whānau have mixed perceptions of EN
Challenges of EN -
Table 4 (continued)
Number of respondents (N = 21)
Quote
Distress of NGT issues 7 I mean it’s quite a traumatic thing to have [the NGT] put in
anyway and then you throw it up again. It’s – it’s really quite traumatic. — Interview 20
Fear of reliance on tube feeds 4 While we can use the tube, I don’t want to be relying on it when we don’t necessarily have to. I’d like her to keep up her, you know natural feeding where we can — Interview 10 Perception that EN disrupt oral intake 7 I don’t want to intervene [with a NGT] too soon to the point
where his stomach’s full and he doesn’t feel hungry so he doesn’t want to eat. — Interview 13
Delaying EN initiation 5 I knew we were probably gonna reach [inserting an NGT] at
a point but I was trying to stall it for as long as I could. — Interview 19
Positive view of EN 9 I think [the NGT] shouldn’t be suggested, I think it should be
informed that you have to have it […]yeah, no its more reas- suring to know that he’s getting intake — Interview 3 Theme 3: There are gaps in the current nutrition support system
Limited contact with dietitians
Dietitian contact often responsive to weight issues 6 So, I think the name of the game up here is more so to make sure the kids are maintaining their weight just to make it through the chemo and that food or diet, as long as their eat- ing, doesn’t seem to be as big of thing. — Interview 13 Difficulty accessing dietitian 2 When you’re only coming in once a week to clinic and you’re
hoping, I guess, you’re gonna see a dietitian then. I don’t know whether you’re guaranteed that you will. — Interview 21
Unreliable sources of information 4 I actually had a guy that I bumped into that […] believes in healing through nutrition. […] So, he did give me some sheets which were quite interesting that just said things that can—which [were] actually quite good to support [him]. — Interview 13
Barriers to implementing dietary advice
Limited food options from kitchen 4 Not to be rude, but I don’t really think the food here is really appetising, especially for kids. The taste is really bland.
That’s why maybe they don’t eat properly. — Interview 7 Overwhelmed at diagnosis so struggle to take in information 8 Parents get sometimes – get really overwhelmed in diagnosis
days, they cannot process information with those things. — Interview 4
Parents need to piece together information from multiple
health professionals 3 I’ve sort of got bits here and there and I sort of can join it all together and I’ve sort of discussed “oh, well this and these guys said this and so forth.” — Interview 10
Treatment side effects impacting intake 16 He’s getting just over half of his daily – what he needs, but then if we put that up, he’s just gonna spew up because he can’t handle it, so it’s like well. It’s like a…just a balancing act between throwing up and him keeping it down. — Interview 8 Delaying addressing issues until treatment completion 6 He’s got three months left of chemo and then he should be
finished completely. So, I’m hoping that once this finishes and then he might come back to his old self. — Interview 17 Little to no use of alternative medicines
Families don’t want to use alternative medicine 7 I guess I’m very conscious that that’s a risky business with a blood cancer so I’m not sure that we will to be honest […]
The reality is almost certainly I won’t use anything
— Interview 21
Theme 3: There are gaps in the current nutrition support system
Some patients and families reported limited contact with the dietitian. Dietitians on the wards often need to prioritise patients with significant weight loss or inten- sive nutrition support, e.g. PN. Families expressed dif- ficulties accessing dietitians for other concerns and often sought alternative sources of information. If they could
see a dietitian, participants reported significant barriers to implementing nutrition advice, such as treatment side effects impacting intake.
When you’re only coming in once a week to clinic and you’re hoping, I guess, you’re gonna see a die- titian then. I don’t know whether you’re guaranteed that you will. — Interview 21 (Mother: female, ALL, 2–4 years)
Table 4 (continued)
Number of respondents (N = 21)
Quote
Open to alternative medicine use but will be cautious of any
unintended consequences 6 We do [want to use alternative medicines] but we usually run
it past the doctors because we do have trust in them and a lot of what [my child] is going through is well out of our depth.
— Interview 13 Theme 4: Desire for more accessible nutrition support
General support accessible at any time
Pamphlet or online resources are accessible at any time 7 I found that pamphlets were quite good. ‘Cause the thing is – oh, even online as well ‘cause we’re here at the hospital.
There’s a lot of down time here. — Interview 15
More information around healthy eating 4 But I just wasn’t like told about like healthy food […] I was never told about like – is she supposed to be eating like fruits and vegetables and all that stuff or is she supposed to avoid [them]. — Interview 2
Recipes/meal ideas 3 And maybe recipes, more recipes. Just easy ones, ‘cause you
know, when your brain’s not working, you can’t think of…I was just heating up tinned spaghetti. — Interview 14 More access to a dietitian for personalised support
Constructive strategies to implement change 4 Maybe help getting her to have some more solids in the future, if someone had any tips on that kind of thing. — Interview 18 More regular dietetic support 2 ‘Cause like they’re “okay, so [this is] the information that he
needs.” Okay, fair enough. You take the information, you process it, then afterwards you don’t get to see [the dietitian]
for another what? Three months. — Interview 4
Want personalised support 9 I mean the problem with written or online resources – which
they are great – is if you’ve got a question about your particular scenario, you’ve gotta have someone else to ask
‘cause it might not be covered in that information. — Inter- view 21
Support throughout treatment
Support starting at diagnosis 4 No, I think [support] was good in the beginning ‘cause it kind of prepared me when I went home. — Interview 14 Support pre-emptive of challenges 3 Maybe, you know, once she’s hit a really good weight and
we’re like, you know, anticipating that the tube will be out within the next six months or whatever then I’d want to be – probably want some support in getting her to take solids a bit more. — Interview 18
Support on treatment completion 2 That would be really good to – on discharge to have some of those options because that’s when you can use them because he’s recovering. — Interview 13
Receiving adequate support
Appreciation for nutrition support received 13 So basically from the moment we’ve come up we’ve received support. So yeah, it’s been good, and it’s been helpful. — Interview 10
There was a consensus that there was information over- load at diagnosis, with limited capacity to absorb informa- tion beyond diagnosis and treatment protocols.
Parents get sometimes get really overwhelmed in
‘diagnosis days.’ They cannot process information. — Interview 4 (Father: male, neuroblastoma, 9–12 years) Parent desire to delay addressing nutrition until after treatment had finished was apparent, as was the limited food availability in/near the hospital.
He’s got three months left of chemo and then he should be finished completely. So, I’m hoping that once this finishes and then he might come back to his old self.
— Interview 17 (Mother; male, Lymphoma, 5–8 years) Parents reported hesitation when asked about alternative or homoeopathic nutrition approaches. Most parents did not report using any natural remedies, but when they did, there was always a certain level of care and caution taken to ensure that it did not interact with any of the therapies they were receiving and have unintended consequences.
Instead of using like the paraffin creams all the time, we asked if maybe we could use some manuka honey. […] But again, the doctors – with his immu- nity dropping so low, any bacteria sometimes can be really harmful. — Interview 13 (Mother: male, AML, 2–4 years)
My husband found that [manioc] has like B19 or some- thing so it’s like an antioxidant, yeah. And it’s, like you know, it’s a traditional breakfast we eat it so […] those things which—which are like sort of highlighted, we would incorporate it more. — Interview 5 (Mother:
male, neuroblastoma, 2–4 years)
Other parents were more confident and would openly dis- close natural remedies they had used;
When it comes to her vomiting, […] I’ll try give her like gingernuts or something like that or make sure there’s like ginger like in our food. — Interview 16 (Mother: female, neuroblastoma, 2–4 years)
Theme 4: Desire for more accessible nutrition support Finally, while some families felt they were receiving adequate support, many wanted more accessible nutri- tion support. Easily accessible, general nutrition support (e.g. healthy eating and nutritious meal ideas) that could be accessed when patients or caregivers had the time and headspace were requested.
I found that pamphlets were quite good. ‘Cause the thing is – oh, even online as well ‘cause we’re here
at the hospital. There’s a lot of downtime here. — Interview 15 (Mother: female, Burkitt’s lymphoma, 2–4 years)
Others requested increased access to dietitians for more personalised support. For example, guidance on making up for missed feeding milestones, or support for healthy eating while their child was immunocompromised. In terms of tim- ing, preferences varied and included support at diagnosis, and on treatment completion. Some families wanted support to be available pre-emptive of nutrition challenges.
I mean the problem with written or online resources […] is, if you’ve got a question about your particular scenario, you’ve gotta have someone else to ask ‘cause it might not be covered in that information. — Inter- view 21 (Mother: female, ALL, 2–4 years)
Relationship between emergent themes
A concept map is displayed in Fig. 1 to illustrate the rela- tionship between the emergent themes. The current gaps in nutrition support that may contribute to the challenges faced by childhood cancer patients and their families were iden- tified. Stretched dietetic resource and existing barriers to implementing dietary advice create an environment where nutrition support is often deescalated during treatment. This may create feelings of isolation when faced with challenges such as fussy eating/food aversions, feelings of frustration and distress, and mixed perceptions about the benefits of EN.
Some families were very happy with the current dietary support provided. However, requests for more readily avail- able additional support throughout their cancer treatment journey were made. Increased access to the hospital dietitian is required for more personalised, patient-centred support.
Additionally, pamphlets and online resources providing gen- eral nutrition support were useful for patients and families to access in their own time.
Discussion
This study aimed to understand the experience of families caring for a child with cancer in NZ, who received nutrition and dietetic support during cancer treatment and determine preferences for the delivery, format, and timing of nutri- tion information/support. Nutrition-related challenges dur- ing treatment included fussy eating, weight changes, and mixed perceptions of EN, which families found distressing.
These challenges were often a result of the intensive cancer therapies; however, perceived limitations to accessing ward dietitians and existing barriers to implementing nutrition advice may exacerbate these experiences.
Two prevalent nutrition-related challenges resulting in feelings of frustration and distress were changes in weight and fussiness. Over half of the children had experienced weight loss since diagnosis, and almost a quarter of par- ents reported an impact on the types and amounts of foods accepted by their child. Food aversions, inadequate intake, poor diet quality, and missing feeding milestones were all reported by families and were categorised as ‘fussy eating challenges’. These challenges have previously been reported in the literature [2, 8, 10, 26] alongside malnutrition [5, 6]
and are often intertwined [9]. Lower BMI percentile at diagnosis and during treatment are related to greater parent- reported resistance to eating and aversions to mealtimes [9].
The contribution of treatment side effects to overall intake exacerbated parent stress, with an average of 6.3 symptoms known to disrupt oral intake reported [10]. These sentiments are echoed in cohorts around the world, with Swedish par- ents reporting the responsibility of getting their child to eat as distressing, often resulting in coercive feeding practices to increase intake [12]. Negative feeding practices, such as coercion, were also commonly discussed in this study. Fami- lies used strategies to prioritise total food intake over diet quality, pressuring their child to eat or allowing their child to dictate their food choices. Similar findings were reported in Australia, where parents reported feeling stressed and engag- ing in conflict with their child at mealtimes, often turning to the use of pressure, food bribes, or threats of an NG tube to coerce their child into eating [2].
Perceptions of EN, such as NG feeding, were mixed.
Some families had faced mechanical challenges (e.g. tube expulsion or blocking), which contributed to negative per- ceptions. Other reasons for resistance to EN included con- cerns about becoming reliant on this form of nutrition or that
EN would disrupt oral intake and the body’s ‘natural’ hunger and fullness sensations. Often it was felt that health profes- sionals did not adequately address these questions and con- cerns. The use of EN during childhood cancer treatment is common, particularly in the prevention of malnutrition [27, 28]. However, inconsistent recommendations from health care professionals may contribute to families’ uncertainty around its benefit [13, 29]. Cohorts of parents in Australia [13] and America [11] have demonstrated similar conclu- sions, with 100% of parents interviewed in an American cohort preferring the use of PN if their child was unable to eat, despite EN being the safer method [11]. Both stud- ies concluded that standardised, evidence-based informa- tion from health professionals was essential for patients and families to make informed decisions [11, 13]. This was also apparent in the present study, where one caregiver reported delaying NG tube insertion because they believed they would have to prepare and blend up meals to use as the feed. Standardised information and nutrition pathways may minimise delays to appropriate nutrition support and reduce malnutrition risk.
Current guidelines for best practice reinforce the impor- tance of early and sustained dietitian involvement in patient care [28, 30, 31]. Families perceived limited access to the ward dietitian as a potential risk factor for increased nutri- tion challenges. All participants had contact with a dietitian, and the quality of the consults was reported to be strong.
However, there was a need for increased frequency of sup- port outside of weight loss or EN. Modifying practice to a more proactive approach could reduce the risk of significant malnutrition in this patient group [28, 30].
Feeling stressed or overwhelmed while receiving large amounts of new information has been shown to impact
Fig. 1 Concept map of emer- gent themes from interviews with childhood cancer patients and their families on their expe- riences with nutrition support while undergoing treatment
families’ recall [13, 32]. Poor retention of information has previously been identified, with > 50% of parents reporting little to no recall of the first two consults with their child’s oncologist [32]. Despite the importance of adequate nutri- tion in a patient’s treatment plan, decision-making around initiating nutrition support is difficult for parents and health- care professionals. Shared decision-making (SDM) is the best practice in patient-centred care, where treatment deci- sions are made in collaboration with the patient (their fam- ily) and health professional [33]. Decision aids (DA) are one way to implement SDM in clinical practice by providing patients with evidence-based options within the context of their preferences and values [34]. Using a DA for nutrition support following a childhood cancer diagnosis would guide patients through a deliberative process of actively weighing up the requirements for nutrition with the pros and cons of engaging in nutrition support during treatment. Nutrition DA’s have been piloted in Australian paediatric populations [35, 36] and warrant implementation in NZ.
This study validates findings from international studies [2, 9–13] and provides an NZ context to the priorities and needs of patients and families. Hearing perspectives from Māori, Pacific, and Asian families reflects the diverse population in NZ. However, the participation of Māori (9%) and Pacific (5%) families was low compared to national averages [37].
Sampling bias must be considered, as participation was volun- tary and during a defined period; therefore, families with par- ticularly distressing experiences with nutrition may have been more likely to participate. Excluding patients who were too unwell to participate (at the discretion of the medical team) may have led to the exclusion of patients and their families most at risk of malnutrition. The distribution of diagnoses was not reflective of the annual distribution, where the most common cancer diagnosis in New Zealand in 2021 were CNS tumours (24%), then leukaemias (23%), and lymphomas (17%) [37]. The limited data collection timeframe may have influenced this, as would the diagnoses admitted to the ward, which were majority ALL and solid tumours such as Wilm’s tumours or neuroblastomas. Additionally, this study may have limited generalisability due to its focus on NZ experiences.
Conclusion
Childhood cancer patients and families experience signifi- cant and distressing nutrition challenges during treatment, including fussy eating, weight fluctuations, and mixed atti- tudes towards EN. Despite the importance of nutrition sup- port in a patient’s treatment plan, decision-making around its initiation is difficult for parents and healthcare professionals.
Standardising information given to patients and their fami- lies through a DA may optimise nutrition support for paedi- atric oncology patients and reduce the discordance between
families and health professionals. Future implementation of a nutrition DA in this population is warranted.
Supplementary Information The online version contains supplemen- tary material available at https:// doi. org/ 10. 1007/ s00520- 023- 07787-3.
Acknowledgements The authors wish to thank the patients and their families for providing valuable insight into the ‘lived experience’ when receiving treatment for childhood cancer.
Author contribution ALL and GP contributed to the study’s conception and design. Material preparation, data collection, and analysis were performed by EC, GP, and ALL. The first draft of the manuscript was written by EC. EvdH is an Advanced Paediatric Oncology Dietitian who brings her expertise into the interpretation of the findings and participated in editing the manuscript drafts. MW, AW, and SL are pae- diatric haematology oncology specialists with an interest in improving nutrition outcomes who bring their expertise into the interpretation of the data and participated in editing the manuscript drafts. All authors read and approved the final manuscript.
Funding Open Access funding enabled and organized by CAUL and its Member Institutions
Data availability The data supporting this study's findings are available from the corresponding author, ALL, upon reasonable request.
Declarations
Ethics approval This study was performed in line with the principles of the Declaration of Helsinki. Approval was granted by the Auckland Health Research Ethics Committee (20/12/2021, Ref: AH23378). Writ- ten informed consent was obtained from all participants. They were reassured about the principle of anonymity, confidentiality, voluntary entry into the study, and freedom to withdraw from the study at any time. All methods were carried out per relevant guidelines and regula- tions.
Consent to participate Written informed consent was obtained from all individual participants included in the study.
Consent to publish Not applicable.
Competing interests The authors declare no competing interests.
Open Access This article is licensed under a Creative Commons Attri- bution 4.0 International License, which permits use, sharing, adapta- tion, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http:// creat iveco mmons. org/ licen ses/ by/4. 0/.
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