**Background:** Childhood cancer and its treatment can severely impair a child's nutritional status through side effects such as anorexia, vomiting, mucositis, and altered taste. Poor nutrition impacts growth, treatment tolerance, and survival. Parents often view feeding as one of the few areas they can control, yet this can lead to strained feeding practices. This study aimed to understand the experience of families caring for a child with cancer in New Zealand who received dietetic support, and their preferences for nutrition information delivery.
**Methods:** A mixed-methods study was conducted at Starship Children's Hospital in Auckland between January and March 2022. Eligible participants were childhood cancer patients aged 0–15 years receiving treatment and their families. Exclusion criteria included palliative status, recent diagnosis with inability to receive additional information, or being too unwell. Twenty-one participants completed a Health and Nutrition Questionnaire (capturing demographics, diagnosis, eating behaviours, symptom assessment, and nutrition support needs) and a semi-structured interview. The Behavioural Paediatric Feeding Assessment Scale (BPFAS) and five items from the Child Eating Behaviour Questionnaire (CEBQ) were included. Interviews were audio-recorded, transcribed verbatim, and analysed using Braun and Clarke's thematic analysis framework with NVivo software. Seventy-one percent of interviews (n = 15) were double-coded independently by two investigators.
**Key Results:** Eighty-six percent of participants (18/21) reported concerns about their child's nutrition during treatment. The most common concerns were anorexia (62%, n = 13), vomiting (29%, n = 6), and weight loss (24%, n = 5). Sixty-seven percent (n = 14) rated nutrition as extremely important, yet only 38% (n = 8) reported nutrition being addressed at every clinic or hospital visit. Over half (52%, n = 11) of children had experienced weight loss since diagnosis (0–5 kg in 38%, >5 kg in 14%), and 91% of parents whose child lost weight found it worrying or very worrying. All participants (100%) had received nutrition care from a hospital dietitian, and 85% rated the advice as helpful. However, one-third (n = 7) wanted more support. The mean number of symptoms on the MSAS was 6.3 (SD 4.2). The most prevalent symptoms were lack of energy (71%), pain (62%), lack of appetite (62%), diarrhoea (57%), and nausea (57%). Over half (55%) of symptoms were rated moderate to very severe.
FOUR THEMES EMERGED FROM INTERVIEWS
(1) Patients experience significant and distressing nutrition challenges — including frustration with weight changes, managing changing tastes, food aversions (reported by 15 participants), periods of inadequate intake (n = 9), poor diet quality (n = 10), and negative feeding practices such as pressure to eat and prioritising intake over diet quality (n = 13). (2) Patients and families have mixed perceptions of enteral nutrition — while some viewed NG tubes positively for maintaining weight, others feared reliance on tube feeds (n = 4), felt EN would disrupt oral intake (n = 7), or delayed NG insertion (n = 5). Distress from NGT issues was reported by 7 participants. (3) There are gaps in the current nutrition support system — including limited contact with dietitians (often responsive only to weight issues), difficulty accessing dietitians, unreliable information sources, barriers to implementing advice (treatment side effects, limited food options, information overload at diagnosis), and a tendency to delay addressing nutrition until treatment completion (n = 6). (4) A desire for more accessible nutrition support — families wanted pamphlets/online resources accessible anytime (n = 7), more personalised dietitian support (n = 9), support starting at diagnosis (n = 4), pre-emptive support (n = 3), and support on treatment completion (n = 2).
**Clinical Implications:** The study highlights that despite universal dietitian contact, families experience significant nutrition-related distress and perceive gaps in support. Standardised, evidence-based information about nutrition and enteral nutrition is needed to reduce confusion and delays in initiating support. The authors recommend implementing a nutrition decision aid (DA) to facilitate shared decision-making, which has been piloted in Australian paediatric populations. Limitations include low Māori (9%) and Pacific (5%) participation relative to national averages, potential sampling bias toward families with more distressing experiences, and a diagnosis distribution not fully representative of national childhood cancer epidemiology.