Abstract
An estimated 60% of pediatric oncology patients experience malnutrition during cancer therapy. Initiation of enteral nutrition (EN) and parenteral nutrition (PN) are interventions aimed at maintaining and promoting growth. Limited literature addressing perceptions of nutrition support methods exists. To develop effective guidelines on nutrition education, it is important to understand perceptions regarding nutrition support. The purpose of this pilot study was to describe perceptions of pediatric oncology patients and parents regarding the use of EN and PN and identify influencing variables. A convenience sample of pediatric oncology patients and parents were surveyed at a large Midwestern children’s hospital. The majority of those surveyed chose PN over EN if they or their child were unable to eat or maintain their nutritional status. Perceptions may be influenced by comfort, ease of nutrition or medication administration, experience, health care team’s recommendation, choice, and image. This study provides health care professionals an initial opportunity to understand perceptions of EN and PN, which may provide a foundation for a multi-institutional study and enhance patient and family education.
Parents or primary caregivers assume responsibility to ensure that daily nutrition needs are met for children. When illness, such as cancer, interferes with the child’s ability to eat and drink adequately, the result may be malnutrition. Malnutrition is estimated to effect between 6% and 60% of the pediatric oncology population during the course of cancer therapy (Ladas, Sacks, Brophy, & Rogers, 2006). The primary goal for nutrition care in this population is to maintain and promote normal growth and development while the child is receiving cancer therapy (Ladas et al., 2005). Health care professionals play an instrumental role in supporting the child and family through the provision of nutrition interventions.
Seventeen out of 100,000 children ages 0 to 19 are diagnosed with cancer annually (Howlader et al., 2011). Advancements in cancer and supportive therapy for children have led to improved outcomes. In 1960, the 5-year relative survival rate for childhood cancer was less than 30%, and as of 2008 it has increased to 83% (Howlader et al., 2011). Cancer therapy places children and adolescents at risk for harmful side effects. Anorexia, nausea, vomiting, mucositis, fatigue, and organ dysfunction are known complications of treatment for those undergoing cancer therapy and hematopoietic progenitor cell (HPC) transplantation. Consequences of these complications may include weight loss, nutritional deficits, electrolyte imbalances, malnutrition, and decreased quality of life. Malnourished children may experience inadequate growth, have increased susceptibility to infection, and potential for delayed cerebral development (Bakish et al., 2003). Furthermore, malnourished children have been shown to have decreased tolerance of chemotherapy, suggesting a relationship between poor nutrition and poorer health outcomes (Sala, Pencharz, & Barr, 2004). However, there is little research on the effect of nutrition interventions on overall survival in pediatric oncology (Ladas et al., 2006).
Review of Literature
Despite the Children’s Oncology Group guidelines published in 2004, standardized nutrition assessments and interventions for children with cancer are not consistently implemented across settings (Ladas et al., 2006). Nutrition interventions aimed at maintaining and promoting normal growth may include nutrition counseling, oral supplements, appetite stimulants, enteral nutrition, or parenteral nutrition (Ladas et al., 2005). Initiating nutrition therapy such as enteral and parenteral support are methods to address nutritional deficits in order to prevent further decline in a child’s nutritional status.
Enteral Nutrition
Enteral nutrition (EN) is the administration of nutrients to patients through the use of oral supplementation and tube feedings (Nisim & Allins, 2005). Nutrients include the essential calories, vitamins, and minerals to promote growth and development. Children may require full or partial nutritional supplementation. To receive EN, the patient must have a functional gastrointestinal tract. Contraindications for using enteral modes include, but are not limited to, severe vomiting and diarrhea, intestinal obstruction or ileus, intestinal ischemia, circulatory shock, or gastrointestinal hemorrhage (Nisim & Allins, 2005). EN has been associated with decreased risk of infection, improved immune response, maintenance of the gut, quality of life, reduced cost, and improved patient outcomes when compared with PN (DeSwarte, Firouzbakhsh, & Finklestein, 2001; Ladas et al., 2006; Mercadante, 1998; Pietsch, Ford, & Whitlock, 1999). Complications associated with EN include tube occlusion, aspiration, diarrhea, abdominal distention, and delayed gastric emptying (Nisim & Allins, 2005).
Parenteral Nutrition
PN is the administration of nutrients to patients through an intravenous (IV) route. PN should be used when the patient is unable to maintain adequate nutritional status through enteral modes, including times when the gastrointestinal tract is not functioning, inaccessible, or intolerant of full EN due to gastrointestinal insult (ASPEN Board of Directors, & the Clinical Guidelines Task Force, 2002; Ladas et al., 2005). Benefits of PN include the ability to promote and maintain nutritional status in situations when the patient experiences generalized anorexia or decreased oral intake and the enteral route is contraindicated. Complications associated with PN administration include catheter-associated blood stream infections, refeeding syndrome, and PN-induced cholestasis (Beghetto, Victorino, Teizeira, & de Azevedo, 2005; Davidson, 2005; Ladas et al., 2005).
Perceptions of Nutrition Methods
Currently, there is limited literature addressing child and parent perceptions of nutrition support methods. Brotherton, Abbott, Hurley, and Aggett (2007) examined parent, dietitian, and nurse perceptions of children with home enteral feedings following percutaneous endoscopic gastrostomy tube placement. Perceptions related to home enteral feeding were described as “the result of insight, intuition, or knowledge gained through being directly involved in the care of a child, and includes participant’s views, feelings and experiences” (Brotherton et al., 2007, p. 432). The authors found differences in perceptions across groups related to the quality and quantity of information provided and the appropriateness of the feeding regimen. Parental perceptions of their engagement in decision making related to nutrition support and the level of support received from health care professionals did not match the perceptions of nurses and dietitians.
In a retrospective analysis of 49 children who had undergone HPC transplantation, reluctance to receive enteral feeds was described among older children, without explanation for the disinclination (Langdana, Tully, Molloy, Bourke, & O’Meara, 2001). A separate study by Papadopoulou, MacDonald, Williams, Darbyshire, and Booth (1997) described 29 children nonrandomized to receive enteral feeds following HPC transplantation. Eight of the 29 patients were distraught by the idea of enteral feeds, and therefore refused participation and instead followed dietary counseling. It is unclear what factors were upsetting to the refusal group or what type of education was provided prior to the recommended intervention.
There are limited data available on the perception of EN and PN and influencing variables, particularly in the pediatric oncology population. Of the few studies published to date, most include small numbers of children or adults. Furthermore, the role of the child and parent perceptions on the child’s nutrition needs and effective nutrition interventions is not clear.
Purpose
The purpose of this pilot study was to describe the perceptions of pediatric oncology patients and parents regarding the use of EN and PN interventions and identify variables influencing those perceptions. For purposes of this study, EN was defined as the use of tube feedings, whereas PN was defined as IV nutrition or total parenteral nutrition (TPN). Based on the study findings, the research team plans to incorporate child and parent perceptions when revising nutrition support guidelines and educational materials.
Methods
Children and parents of children who have received or were currently receiving treatment from the outpatient oncology service at a large Midwestern children’s hospital were invited to participate in the study.
Focus Group
The research team facilitated a parent focus group to specifically discuss the development of the Child/Parent Nutrition Enhancement Perception Scales. The focus group used a convenience sample of parents (n = 5). Inclusion criteria for the focus group included English-speaking parents of pediatric patients with an oncology diagnosis. Exclusion criteria include children, parents of children with a primary immunodeficiency diagnosis, and parents of children with a primary hematology diagnosis. Parents received a $10 gift card for participating in the focus group. Recruitment strategies for the focus group included posters and one-on-one conversations with parents. A draft of the instrument was given to each focus group participant. The instrument was reviewed for clarity, level of understanding, and content. Focus group data were collected manually from the facilitators of the focus group. Members of the research team transcribed the data into a Microsoft Word document. The research team examined the data for common themes and made necessary changes to the study surveys. Their recommendations included omission of overlapping categories, minimization of free text answer options, and development of Likert-type scales.
Surveys
Children and parents of children (n = 49) who received treatment from the outpatient oncology service at a large Midwestern children’s hospital were invited to participate in the study over a period of 1 month in 2009. Inclusion criteria included English-speaking children with an oncology diagnosis who were at least 7 years of age or English-speaking parents of pediatric patients with an oncology diagnosis. Children and parents of children currently receiving cancer-directed therapy and those who are off-therapy were asked to participate in the study. Exclusion criteria included children and parents of children with a primary immunodeficiency or hematology diagnosis. Approximately 200 patients are seen in the outpatient oncology clinic per month. The sample size attempted to be inclusive of all individual patients seen within the month of data collection, yielding approximately one fourth of the total oncology visits during the study period.
Two instruments (Child/Parent Nutrition Enhancement Perception Scales) were developed for this study. The Child Nutrition Enhancement Perception Scale included a total of 29 questions, and the Parent Nutrition Enhancement Perception Scale included a total of 35 questions. The scales used self-report and consisted of multiple choice, Likert-type scales, and open-ended questions. General topics included demographic information, experience with EN and PN, and preference for nutrition support. Answers to the open-ended questions were used to provide context and enhance understanding of the survey data. Psychometric properties of the survey were not assessed prior to this study. The procedure for data collection included a number of steps. The research team created individual survey packets for each parent and child. Participants were allowed the opportunity to participate in the pilot study and submit their surveys anonymously to a centrally located secure drop box on completion. Survey data analysis was conducted using SPSS version 16 software. Descriptive statistics were analyzed for each variable. The study was approved by the institutional review board.
Findings
Sample Characteristics
A complete set of sample characteristics can be found in Table 1. Two of the child participants failed to complete the survey in its entirety; therefore, a total of 15 children were included in the final sample. The majority of the children in our sample had a hematologic malignancy. A total of 32 parents were included in the final sample. The majority of the parents were Caucasian. Twenty-three parents (74%) had at least some college education. Their children aged in range from infancy to 21 years of age, with 72% being male and a slightly higher number of hematologic malignancies in comparison to solid tumors. Among those, 60% of the children were diagnosed with a malignancy within 2 years of the study. Information describing which participants were currently receiving cancer-directed therapy versus those who were off-therapy was not discretely collected. Following consultation with statistical colleagues, it was determined that due to the small sample size the total number of responses for each question would be reported.
Sample Characteristics.
Note: HPC = hematopoietic progenitor cell. One child participant failed to report diagnosis; 1 parent participant failed to report age.
Child/Parent Surveys
Components of nutrition were assessed by evaluating weight and eating as 2 separate variables. When receiving treatment for cancer, child participants were slightly more worried about their weight than about their eating. More than half of the children and majority of parents were either very worried or somewhat worried about their weight. With regard to eating, the majority of parents were either very worried or somewhat worried, whereas almost half of the children were not at all worried (see Table 2).
Reported Worry About Child’s Eating and Weight during Treatment.
From the viewpoint of the child, concerns about eating and weight were most often expressed by parents. Children and parents agreed that concerns about eating were also expressed by dietitians followed by physicians, nurse practitioners, and, less often, staff nurses.
Additionally, concerns about weight were expressed by dietitians, nurse practitioners, and physicians. Staff nurses were not identified by any child participants as verbalizing concerns regarding weight (see Table 3).
Expressed Concern Regarding Eating and Weight.
Note: Children and parents were asked if anyone had expressed concern regarding eating or weight. The “n” is less than the total sample because only those who answered “yes” reported who expressed the concern.
Almost half of the parents and children had spoken with someone regarding EN, and less often PN. Conversations with parents and children about both forms of nutrition support were primarily initiated by physicians (Table 4). Conversations with children regarding EN primarily occurred when losing weight (n = 3, 50%) or with a decrease in appetite or oral intake (n = 2, 33%). EN was discussed with parents most often when the child did not want to eat as much (n = 9, 56%), at diagnosis (n = 7, 44%), and less often when the child lost weight (n = 6, 38%). Children reported discussions about PN when losing weight (n = 4, 80%) or with a decrease in appetite or oral intake (n = 2, 40%). PN was discussed with parents when the child did not want to eat (n = 6, 38%), lost weight (n = 5, 31%), at diagnosis (n = 3, 19%), or prior to HPC transplantation (n = 3, 19%). Nutrition support was also discussed at other times not predefined by our survey including post-HPC transplantation, at hospital discharge, when the child experienced mucositis, or when the family refused EN.
Conversation Initiated Regarding Nutrition Support.
Note: Children and parents were asked if anyone has initiated conversations regarding nutrition support. The “n” is less than the total sample because only those who answered ”yes” reported who initiated the conversations.
Of 14 child participants, 14% had a history of EN whereas 50% had PN. When asked what nutrition method they would prefer if they were unable to eat or keep weight on, all participants chose PN (Table 5). The majority of child participants that chose PN did not have a history of EN. This finding was significant, P = .040. Most commonly reported reasons for choosing PN included existing IV access and objection to the idea of nasogastric tube placement due to perceived discomfort.
I already had a port in for the chemo, so we used that with the TPN. (17-year-old female with history of osteosarcoma) Don’t want things down my nose or throat. (13-year-old female with history of Burkitt’s lymphoma) Tube feeding sounds disgusting and uncomfortable. (15-year-old female with history of ALL)
Preferred Method of Nutrition.
Note: EN = enteral nutrition; PN = parenteral nutrition. Missing data for 1 child participant and 5 parent participants.
Of the 32 parent participants, 28% had a child with a history of EN at some point during therapy, and 41% had a history of PN. We did not assess whether any child may have had one or both forms of nutrition support. Eight parents (25%) had a friend or family member with a history of EN, and 2 parents (6%) had a friend or family member who had experience with PN. Of 27 parent participants, 59% would prefer PN if their child was unable to eat or maintain weight, whereas 41% would choose EN (Table 5). Five parents did not identify which method of nutrition support they preferred. Qualitative statements reflecting their rationale for choosing a particular nutrition support method were collected.
Chose tube feedings because it helped to keep digestive system active, making it easier to adjust back to food. (Parent of 8-year-old female with neuroblastoma) Tube feeding is helpful in giving meds and not as hard on the liver and keeps digestive system working properly. (Parent of 5-year-old female with astrocytoma) Having a tube up her nose was a lot of hassle. She was uncomfortable. The [parenteral nutrition] was more convenient. (Parent of 4-year-old female with ALL) When our child was on [parenteral nutrition] it was very simple for our family, which made life a little more “normal.” (Parent of 13-year-old female with Burkitt’s lymphoma)
To better understand additional factors that may influence perceptions or decisions related to nutrition support, children and parents were asked to rate factors on a Likert-type scale reflecting the degree of importance. Most parents and children rated comfort as a very important factor when deciding on the route for nutrition support, whereas children rated “my choice” as the most important factor (Table 6).
Factors Rated as “Very Important” When Choosing a Preferred Nutrition Method.
Note: TPN = total parenteral nutrition. Child participants were not asked to rate level of importance for cost, safety, or child’s preference. Parent participants were not asked to rate level of importance or my choice.
Discussion
Previous studies have shown that optimizing nutrition during treatment influences overall tolerance and health outcomes (Bakish et al., 2003; Sala et al., 2004). However, the influence of child and parent perceptions on preferences for nutrition support has not been well studied. This study provides health care professionals an initial opportunity to understand the perceptions of EN and PN in pediatric oncology patients and their parents. Prior to data collection, the research team anticipated, based on clinical experience, that pediatric oncology patients and parents would have a negative perception regarding the use of EN in comparison to PN, and thus preferentially choose PN when nutrition support was clinically indicated. The data support this belief in that all the children and more than half of the parents chose PN as their preferred method of nutrition support. The preference for the method was influenced by many factors; however, those noted to be most important were comfort, ease of medication or nutrition administration, choice, and the health care team’s recommendations.
Whereas many child and parent participants reported previous experience with EN, experience was not a factor consistently rated as very important in choosing a nutrition support method. Despite half the child participants having no experience with PN, all chose PN. Similarly, only half of parent participants that chose PN had a history with PN. In the small number of child participants who reported a history of EN, it is unclear why they did not choose EN. Qualitative responses from the children reflecting their preference for PN yielded 2 themes: existing IV access and displeasure associated with nasogastric tube placement. This may suggest that convenience and comfort are important factors influencing perceptions of nutrition support.
Many child participants without a history of EN objected to the idea of nasogastric tube placement, which may support an assumption that the discomfort children expressed regarding EN is likely perceived and not based on an actual experience. The finding is consistent with Scolapio, Picco, and Tarrosa (2002), where perceived comfort of delivery was found to be the primary determinant of preference in adult oncology patients. This suggests that despite the presence or absence of experience with either method of nutrition support, children and parents may have preconceived negative perceptions regarding EN.
Factors consistently rated as very important by children and parents were comfort and ease of medication and nutrition administration. To enhance the education related to nutrition support, health care professionals should feel comfortable describing situations requiring nutrition support, risks and benefits of each method, and factors influencing choice. Our findings suggest creative interventions targeted at enhancing understanding related to EN may be beneficial to address children’s and parents’ negative perceptions of EN. Examples of interventions may include matching children with other patients who have received EN to share experiences and discuss fears and concerns, sharing written testimonials of children and parents who have had experience with EN, and involving child life specialists to provide developmentally appropriate activities, including use of therapeutic play and procedural preparation for nasogastric tube placement.
The health care team’s recommendation was also identified as very important in the decision-making process regarding nutrition support. In our study, almost half of the children were not at all worried about their eating or weight, whereas more than half had someone else express concern while receiving cancer therapy. This indicates a need to educate children with respect to the importance of eating, maintaining weight, and the role of nutrition support during treatment. Children felt their parents were most likely to express concerns regarding their eating and weight, yet parents were not identified as the most often to initiate conversations regarding EN or PN. Parents felt concerns regarding eating and weight were expressed differently. They reported the dietitian to most likely express concern about eating, while the nurse practitioner most likely to express concern about weight. Despite which health care professional expressed concern, physicians were reported to most often initiate conversations. It is important to better understand the inconsistency between expressing concerns and actual discussions regarding nutrition support. Interestingly, from the perspectives of both the child and parent participants, staff nurses were least likely to express concern regarding eating or weight and least likely to initiate conversations regarding nutritional support in all cases except when discussing PN with parents. Based on the frequency of patient and family interactions, staff nurses likely engage in conversations regarding nutrition support with children and families. However, the study only asked participants which health care professionals initiated conversations regarding EN and PN and did not ask participants to recall ongoing conversations. An area of future research includes identifying the perceptions of staff nurses regarding timing of conversations involving nutrition support and barriers to communicating with patients and families about EN and PN.
To ensure that children and parents receive accurate unbiased information from multiple members of the health care team, it is essential that the information be based on current and best practices as it relates to nutrition in pediatric oncology. In addition to providing standardized education, it is critical to assess the readiness of the child and parent to learn about the importance of nutrition. Although this study did not evaluate the parent’s preference regarding the timing of education, it may be beneficial to begin these discussions earlier in treatment especially for those children at high risk for developing nutritional deficits.
Limitations and Future Research
The design of our pilot study has a number of limitations. First, this was a single institutional study and data may reflect the culture of that institution. Second, the sample size was small, limiting the statistical significance of the analysis. With a small sample size, the research team was unable to make comparisons across disease groups or broader generalizations to the pediatric oncology population. Third, the sample characteristics of the children and parents had great variability, including levels of experience with nutrition support methods, diagnosis, time since diagnosis, and age. Fourth, the child and parent surveys were not matched to assess the influence of parent perceptions on their child. Correlating parent results with their child may provide useful information regarding the influence within the family unit. Fifth, the data collection instrument did not undergo any psychometric evaluation prior to this study. Lack of psychometric data supporting the instruments’ reliability and validity limited the strength of study findings. However, the congruence of qualitative and quantitative data supports further development of these scales. Sixth, there was an overall lack of substantial literature regarding perceptions of nutrition support methods in pediatrics or pediatric oncology, limiting the ability for the current state of the science to support study findings. And finally, due to the descriptive study design, results did not reflect causal relationships and must be interpreted with caution.
To build on study findings and enhance our understanding of child and parent perceptions of nutrition support methods, several areas for future research are recommended. First, a multi-institutional study would provide researchers with a larger sample size, allowing for a more in-depth description of child and parent perceptions and influential factors in decisions related to nutrition support. Furthermore, a greater understanding of the impact cancer therapy has on pediatric oncology patients by disease in conjunction with a larger sample size may support the development of a profile of at-risk patients for nutritional deficits. Future nutrition support interventions may then be developed and tailored for those at greatest risk and incorporate perceptions of children and parents. Second, research is needed to further develop and test scales assessing parent and child perceptions. Future studies should match child and parent respondents to determine the impact, if any, parent perceptions have on child perceptions. Third, research is needed to identify health care professionals’ perceptions of nutrition support in pediatric oncology and perceived barriers to implementing recommended nutrition support interventions. As previously discussed, children and parents described the health care team’s recommendation as important in determining a preferred nutrition support method; however, there is limited literature describing perceptions of health care professionals. Finally, the impact of nutrition education, including the content and quality of interactions, provided by health care professionals on child and parent perceptions warrants further study.
Conclusion
This pilot study begins to describe child and parent perceptions of EN and PN methods in the pediatric oncology population. The majority of children and parents chose PN if they or their child were unable to eat or maintain their nutritional status. Comfort of the nutrition support method was identified most often by children and parents as an important factor influencing their preference. Other factors that influenced children and parent preferences included ease of medication administration and nutrition, and the health care team’s recommendation. Results of this study support the need for health care institutions to examine their standards related to nutrition support, the role of child and parent perceptions in nutrition support decision making, and incorporate those perceptions into an overall education approach.
Footnotes
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The authors received financial support from the Rebecca Slye Endowment Grant to conduct the research.