Navigating nutrition as a childhood cancer survivor: Understanding patient and family needs for nutrition interventions or education

Abstract

AimNutrition challenges are common during childhood cancer treatment and can persist into survivorship, increasing the risk of non‐communicable diseases. Evidence‐based practice and implementation of nutrition interventions/education for childhood cancer survivors has been poorly investigated and may influence their future health. This study aimed to explore the nutrition interventions/education needs of childhood cancer survivors and the barriers and facilitators to delivering follow‐up services in New Zealand.MethodsSemi structured interviews were conducted with childhood cancer survivors and/or their families (n=22) and health professionals (n=9) from a specialist paediatric oncology centre in New Zealand. Interviews were audio‐recorded and transcribed verbatim. Transcripts were analysed inductively using thematic analysis. A multi‐level consensus coding methodology was used where each theme and associated subthemes were discussed with the study team for confirmation to ensure accurate coding and analysis.ResultsThree themes emerged from the analysis: (1) the current survivorship care pathway does not provide adequate interventions/education, (2) weight and dietary changes are common challenges and (3) requirements for interventions/education in survivorship are varied. Common nutrition‐related concerns included fussy eating/limited dietary intake, poor diet quality, difficulties with tube weaning, and challenges with weight gain. Participants expressed a desire for education on healthy eating alongside information about cancer‐related nutrition issues, such as learned food aversions. A preference for clear referral pathways and multifaceted interventions tailored to individual patient needs was identified.ConclusionThe trifecta of treatment side effects, negative feeding practices and poor messaging from health professionals creates a challenging environment to optimise nutrition. A stepped care model matching the intervention intensity with the childhood cancer survivors is required. Education for healthcare professionals will improve the delivery of timely interventions/education and monitoring practices.

Nutritional assessment and dietary intervention among survivors of childhood cancer: current landscape and a look to the future

“…Validated and accessible interventions focusing on CCS dietary habits are lacking. Significant demographic and medical heterogeneity within the survivor population, lack of consensus regarding optimal timing for intervention, paucity of uniform assessment tools / scalable interventions, and logistics surrounding long-term follow-up programs are among the obstacles to creating uniform CCS-directed nutritional assessments and recommendations ( Table 1 ) ( 7 , 16 , 63 , 65 ). Properly addressing each of these barriers will enable the delivery of critical nutritional assessment, education, and intervention to successfully modify adverse health behaviors before they become long-term practices.…”

“…A variety of methods aiming to better understand overarching survivor needs, as well as identify optimal communication and education delivery strategies, have been investigated ( 10 , 24 , 64 ). In a qualitative study, Clarke et al noted that survivors desire general, as well as cancer-directed, nutrition education and guidance ( 63 ). The authors suggest using either an in-person or remote multi-step approach, with an initial focus to evaluate adherence to, and benefit from, general dietary guidelines.…”

“…The authors suggest using either an in-person or remote multi-step approach, with an initial focus to evaluate adherence to, and benefit from, general dietary guidelines. Subsequently, recommendations would be tailored to the individual needs of the patient ( 63 ). Data regarding the optimal modality for delivering effective and sustainable dietary counseling and intervention remain limited.…”

“…The physical and emotional toll of childhood cancer impacts not only patients, but also caregivers and families alike. As such, parental approach often changes in the course of cancer care and caregivers tend to become more permissive with respect to their sick child’s eating habits ( 63 , 64 ). Provision of timely caregiver education underscoring the potential health impact associated with such decisions is critical ( 69 ).…”

“…The availability and scope of long-term survivorship care after childhood cancer is highly variable and depends on factors such as geographic location, treating institution, and local/regional resources ( 62 , 70 ). Infrequent clinic visits, limited time, and insufficient resources are several systemic factors that limit healthcare providers’ ability to provide ongoing, comprehensive education/counseling and meaningful lifestyle interventions ( 63 ). A necessary component of addressing these hurdles is the identification of dietary intake and nutrition quality assessment tools that enable efficient evaluation in the clinical setting.…”