A Thesis Submitted in Partial Satisfaction of the Requirement for the Degree of Haster of Science in Home Economics by Barbara J
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CALIFORNIA STA~E UNIVERSITY, NORTHRIDGE NUTRITIONAL ATTITUDES ,..:\ND PRACTICES OF PARENTS OF CHILDREN V.1ITH CAi"JCER A thesis submitted in partial satisfaction of the requirement for the degree of Haster of Science in Home Economics by Barbara J. Luboff June, 1981 The Thesis of Barbara J. Luboff is approved: Ann R. Stasch, Ph.Do ( Connnittee Chair) California State University, Northridge ii To my wonderful children, Shari, Kevin and Alyssa~ and to my husband, Gary, for his understanding, encouragement, and faith in my potential; and to the many children who have cancer, for their courage which provided my inspiration to undertake this projecto iii ACKNOWLEDGMENTS Many individuals contributed to this research project. A very spec.ial thank you to Dr. Ann R. Stasch, Connnittee Chair, for her encouragement, time, and guidance throughout my study. I would like to extend my appreciation to my committee members, Dr. Marjory L. Joseph and Dr. Christine H. Smith, for their assistance. I would also like to thank the following people at Children's Hospital of Los Angeles: Dr. Stuart Siegel, Chairman of the Hematology/Oncology Division, for his time and expertise, and especially for his belief in the value of nutrition, all of which made this research project possible; Judith Ashley and Fran Earl, both members of the Hematology/Oncology Team, for their suggestions regarding the questionnaire; all of the physicians in the Hematology/ Oncology Division for their-cooperation; and all of the parents who took their time to participate in this study. iv CONTENTS Page DEDICATION • o • • o. 0 • •. 0 •. • •. • o. 0 iii ACKNOWLEDGEHENTS . •. 0 • • 0. •. 0 • • iv LIST OF TABLES o 0 0 0 • • • 0 0. 0 0 0 ix ABSTRACT . 0 . 0 0 0 . .. 0. 0 0 .. 0 0 X Chapter 1. INTRODUCTION . 0 . 0 . 0 1 Purpose of the Study 0 . 0 . 0 . 1 Justification 0 0 • 0 • 0 o. o. o. 0 •. 2 Objectives • • • • 0 • o. • •. •. 0 o. 0 • 0 2 Assumptions 0 0 0 0 0 • 0 • 0 • 0 •. •. • 3 3. Limitation • o •- • o. • o. o • o Glossary o • • 0 • 0 0 • 0 0 0 0 0 ~ 0 • 4. 2. REVIEW OF THE LITERATURE 0 0 o. 0 0 • 0 • 0 • 7 What is Cancer? 0 • • • 0 0 0 0 o. 0 0 0 Cancer Treatment • • 0 0 0 0 0, . 0 0 Q. 0 9 Cancer in Children 0 0 0 • 11 Introduction to Nutrition . 14 Nutrition and the Child v1ith Cancer 0 0 0 0 16 General Effects of Cancer on Nutritional Status • 0 • • c 0 • Q_ 0 0 18 v Chapter Page ~norexia-Cachexia Syndrome · 24 Nutritional Therapy for the · Cancer Patient .• ~ ~ • ~ •• 0 o. Cl. • 27 Rationale of Nutritional Therapy 28 Nutrition and the Pediatric Cancer Patient • • • • • • • • • • o 32 Specific Pamphlets Written for the Cancer Patient • . 33 Nutrition Misinformation 0 o. 0 0. 0 0 0 36. Confusion and Concern Over Nutrition 36 Does a Rational Anti-Cancer Diet Exist? 40!' ->'\ The Public and Nutrition 41) METHODOLOGY 0 0 0 44 Procedure • • • • • • 0 • 0 • • 44 Data Collection • 0 0 0 0 • • 0 • • 45 Analysis of Data . 45 4. RESl~TS AND DISCUSSION 46 Setting of the Study .. 46 Biographical Information on the Respondent and Patient . • . • . 48 Background of the Respondent 48 Background of the Patient . 49 Respondent's Interest in Nutrition 52 vi Chapter Page Interest Since Diagnos~s . • • • . 52 Anti-Cancer Diets 52 Nutrition as an Avenue to Involvement in Therapy 53 Nutrition Information 54 Sources of Nutrition Information . 54 Desired Sources of Nutrition In format ion 56 Cancer and Diet 57 Cancer Quackery 57 Diet as a Cause of Cancer 57 The Effect of Proper Diet 62 Avoidance of Foods . 62 Cancer and Vitamins 64 Child's Nutritional Status . 65 Changes in Appetite 68 Changes in Weight 69 Specific Areas for Nutrition Education . 69 5. SUMMARY, CONCLUSIONS, AND RECOMMENDATIONS . 71 Summary 71 Conclusions 72 vii Chapter Page Conclusions • 0 0 0 0 0 0 ~ • 0 0 0 0 72 REFERENCES CITED • • 0 • • o o o o o a 77 APPENDIX 0 0 0 0 0 0 0 0 • 0 0 • 0 • 0 • 0 82 viii ,, . TABLES Table Page 1. Nutrition Info ~'"Ill at ion and Irrvolve:rrient Crosstabulation by Ethnic Group 55 2. Diet and Cancer, Cross tabulation by Status of the Disease . 59 'l .Jo Diet and Cancer, Crosstabulation by Respondent's Education . 60 4. Diet and Cancer, Crosstabulation by Ethnic Group . 61 5. Nutritional Problems, Cross tabulation by Child's Age . 67 ix ABSTRACT NUTRITIONAL ATTITUDES AND PRACTICES OF PARENTS OF CHILDREN WITH C~~CER by Barbara J. Luboff N~ster of Science in Home Economics The literature indicated a relationship between nutri tion and cancer, including cau.sative factors, lm~~ered nutritional status, nutritional support, and unconventional nutritional "cures." Since cancer is prevalent in children and children have greater nutritional needs than adults, the objective of this study was to determine parental attitudes and practic.es of children with cancer. A survey of parents was conducted at Children's Hospi tal of Los Angeles, California. The results showed a very high interest in nutrition. Parents felt they lacked adequatt:."'. nutrition information. They v.ranted information from the· doctor, dietitian, and specific booklets regard ing their child's nutritional problems, proper diet for a X child with cancer, and how to distinguish solli,d nutrition advice from "quackery." Although parents were unsure of the role of diet in cancer causation and the effects of proper diet, they were avoiding, to a greater extent than the general population, serving foods alleged to cause cancer. Many parents were prescribing vitamins for their children. Although health professionals in the clinic were aware that some patients had been on "anti-cancer" diets, few parents volunteered that they had put their children on any of these regimens. A gap existed between the parents' interest in nutri tion and the amount of nutrition information received. Parents were confused over the role of nutrition due to the plethora of "misinformation" available. The results indi cated a strong need for sound and effective nutrition education. xi Chapter 1 INTRODUCTION Purpose of tht?. Study Cancer has been knmvn to man through the ages. It is now one of the most feared diseases. In the last twenty years evidence of a relationship between nutrition and cancer has been noted. This relationship includes causa tive factors in man's diet, development of anticancer drugs from knowledge of metabolism, effects of cancer and cancer therapy on nutritional status, and application of nutritional support, some of the information maybe beneficial and some may be quackery. Children are not exempt from cancer. Cancer i.s the second leading cause of death in children, while accidental death is first. Children's canc.e!." survival rates are improving. Childhood cancer can no longer be deemed invariably fatal. The child must: have proper nutrition during and aft'er his therapy to enable him to develop both physically and mentally. The child's need for proper nutrition is compounded by the effects of cancer and cancer therapy, which can lower nutritional status, and thus lower the child's immunocompetence and response to disease. In view of the interest and research in the 1 2 relationship of nutrition to cancer, and the special needs of children with cancer, it was considered of value to conduct an informational survey directed to parents of children with all types of cancer. Justification The results of this survey should be important for the following reasons: (1) to provide hematologists/oncolo- gists, radiologists, dietitians and nutritionists, and all those who deal with pediatric cancer patients information that should aid in treatment of their patients; (2) as a foundation upon which to develop and implement nutrition and cancer education programs; (3) to make parents aware of unproven and potentially hazardous nutritional remedies; and (4) to give the parent, through nutrition, an avenue for greater participation in the treatment process. Objectives The objectives of the survey were to determine the following: (1) how parents feel about nutrition in relation to their child's illness; (2) whether parents are confu.sed over the role of nutrition in cancer therapy due to the proliferation of both sound information and misinformation; (3) where parents e.re seeking nutrition information and assistance; (4) where parents would like to be able to.obtain nutrition information and 3 assistance; (.5) what nutritional problems children with cancer are having; and (6) in which areas parents would like more information regarding nutrition and cancer. Assun:iptions The following assumptions were made: (1) the questionnaire was a valid means of collecting data to be used in meeting objectives of the study; (2) parents would not communicate with each other regarding the questionnaire, during the time in which the study was conducted; (3) the Spanish version of the questionnaire was equivalent to the English versiono Limitation The study was limited by being conducted only at Children's Hospital of Los Angeles, California. .. 4 Alimentart Canal - the tubular passage that extends rrom mout to anus and functions in digestion and absorp tion of food and elimination of w·aste; also called the gastrointestinal tract. Anorexia - loss of appetite for food. Cachexia - a condition characterized by malnutrition and wasting of body tissues which may occur during the course of a~ illness. Cancer - malignant disease marked by abnormal growth of cells. Normal tissues can be invaded by abnormal cells; the abnormal cells can also leave the original site and form new colonies elsewhere in the body. Carcinogen - a chemical or other agent that causes cancer. Carcinoma - cancer of the tissues which cover or line the body surface and internal organs.