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Informational Needs of Child and Adolescent Cancer Patients and Their Parents Nancy Ann Ohanian, RN, MN Statement of
Purpose
The purpose of this study was to describe the informational needs of 9- to 18-year-old children and adolescents with cancer in relation to their disease, as well as to their personal, family, and social concerns. In addition, the informational needs of the parents of seven patients were also described to explore the differences that may exist among children and adolescents with cancer and their parents.
Problem Statement
problem central to the study was the lack of data describing the informational needs of 9- to 18-year-o!d children and adolescents with cancer. Furthermore, there were no valid, reliable instruments available to describe the nature, importance, and comprehensiveness of informational needs exclusive to this group of cancer patients. The
Design conducting this study, a methodological design was used to develop two instruments to collect pertinent data to describe the informational needs of children and adolescents with cancer and their parents. A descriptive design was used to describe the scope, nature, and importance of information needed by children and adolescents and their parents and exploratory-comparative design was used to explore differences .in the nature of informational needs and importance value of those needs In
among children and adolescents and their parents.
Sample Size A nonprobability sample of 13 patients was chosen from a pediatric hematology-oncology outpatient clinic at a university medical center. Children who were between 9 and 18 years of age, within 5 years postdiagnosis, and currently receiving chemotherapy were eligible for participation in the study. Informed consent was obtained from parents of minors. Seven parents of the patient sample agreed to participate in the study.
Methodology Semistructured interview methods were used for data collection. The patient questionnaire consisted of 125 questions and the parent questionnaire consisted of 112 questions. The interview questions were designed to elicit the informational needs of children and adolescents with cancer and their parents in relation to disease-related concerns, personal concerns, social concerns, and family concerns. The questionnaires were adapted from the Derdiarian Information Needs Assessment instrument for adult cancer patients in relation to the categories of informational needs identified. Three nurse experts in oncology nursing practice were asked to evaluate the questionnaires for validity and
From the Department of Pediatrics, Southem California Permanente Medical Group, Los Angeles, CA Supported by the American Cancer Society. National Office, Atlanta, GA. © 1990 by Association ofpediatric Oncology Nurses.
Downloaded from jpo.sagepub.com at SETON HALL UNIV on April 7, 2015
64
comprehensiveness. This evaluation by experts, as well as support from the theoretical framework and
review of literature underlying the study, supported the content validity of the instruments developed for 9- to 18-year-old children and adolescents with cancer and their parents. Data describing the informational needs of child and adolescent cancer patients and their parents were collected either during the patients’ scheduled clinic visits or during pre-arranged home visits.
Analysis ’
Results of the study indicated that both children and adolescents with cancer and their parents information in relation to disease concerns. Major informational needs expressed by the children and adolescents included those related to disease and social concerns. For parents, the majority of informational needs expressed also related to disease concerns. In relation to the importance of information needed, most children and adolescents identified informational needs related to personal (bodily) concerns as most important, whereas most parents identified informational needs related to disease concerns (prognosis) as most important.
sought
°
Discussion
. .
Because this study consisted of a small convenience sample of children and adolescents with and their parents, there.can be minimal generalization. Since the purpose of this study was to identify and describe the informational needs of children and adolescents with cancer and their parents by using semistructured interviews, the results do provide a beginning framework for further exploration by other researchers. cancer
-
Adaptation
to Illness in Adolescents
With Cancer Pamela Hinds, RN, PhD Susan Scholes, RN, BSN, Jami Gattuso, RN, MSN, Melinda Riggins, RN, BSN, and Brenda Heffner, RN, BSN Adaptation to illness is theorized to be a process through which individuals constructively cope with threatening conditions in order to meet their health needs. For adolescents with cancer, adaptation to illness is believed to be a continuous process through which adolescents attempt to deal in a positive way with the demands of the disease and its treatment. Remarkably little is known about the adolescents’ process of adaptation, including its exact form, sequence, and temporal_ nature. The purpose of this study was to describe major components and characteristics of the adaptational _ process as it was experienced by adolescents during their first 6 months of chemotherapy. The conceptual framework for this study was derived from the works of Lazarus and Folkman’ and Murray and Zentner. 2 The process of adaptation to illness in adolescents with cancer was delineated into three major components: physiological adaptation, social adaptation, and’adaptation in morale. The setting for the study was a pediatric comprehensive cancer center that includes a 48-bed inpatient setting and an ambulatory care setting. The study design was a descriptive-correlational, new or
From St. Jude Children’s Research
Hospital, Memphis. TN.
© 1990
by
Association of Pediatric
Oncology Nurses.
Downloaded from jpo.sagepub.com at SETON HALL UNIV on April 7, 2015
Informational Needs of Child and Adolescent Cancer Patients and Their Parents Nancy Ann Ohanian, RN, MN Statement of
Purpose
The purpose of this study was to describe the informational needs of 9- to 18-year-old children and adolescents with cancer in relation to their disease, as well as to their personal, family, and social concerns. In addition, the informational needs of the parents of seven patients were also described to explore the differences that may exist among children and adolescents with cancer and their parents.
Problem Statement
problem central to the study was the lack of data describing the informational needs of 9- to 18-year-o!d children and adolescents with cancer. Furthermore, there were no valid, reliable instruments available to describe the nature, importance, and comprehensiveness of informational needs exclusive to this group of cancer patients. The
Design conducting this study, a methodological design was used to develop two instruments to collect pertinent data to describe the informational needs of children and adolescents with cancer and their parents. A descriptive design was used to describe the scope, nature, and importance of information needed by children and adolescents and their parents and exploratory-comparative design was used to explore differences .in the nature of informational needs and importance value of those needs In
among children and adolescents and their parents.
Sample Size A nonprobability sample of 13 patients was chosen from a pediatric hematology-oncology outpatient clinic at a university medical center. Children who were between 9 and 18 years of age, within 5 years postdiagnosis, and currently receiving chemotherapy were eligible for participation in the study. Informed consent was obtained from parents of minors. Seven parents of the patient sample agreed to participate in the study.
Methodology Semistructured interview methods were used for data collection. The patient questionnaire consisted of 125 questions and the parent questionnaire consisted of 112 questions. The interview questions were designed to elicit the informational needs of children and adolescents with cancer and their parents in relation to disease-related concerns, personal concerns, social concerns, and family concerns. The questionnaires were adapted from the Derdiarian Information Needs Assessment instrument for adult cancer patients in relation to the categories of informational needs identified. Three nurse experts in oncology nursing practice were asked to evaluate the questionnaires for validity and
From the Department of Pediatrics, Southem California Permanente Medical Group, Los Angeles, CA Supported by the American Cancer Society. National Office, Atlanta, GA. © 1990 by Association ofpediatric Oncology Nurses.
Downloaded from jpo.sagepub.com at SETON HALL UNIV on April 7, 2015
64
comprehensiveness. This evaluation by experts, as well as support from the theoretical framework and
review of literature underlying the study, supported the content validity of the instruments developed for 9- to 18-year-old children and adolescents with cancer and their parents. Data describing the informational needs of child and adolescent cancer patients and their parents were collected either during the patients’ scheduled clinic visits or during pre-arranged home visits.
Analysis ’
Results of the study indicated that both children and adolescents with cancer and their parents information in relation to disease concerns. Major informational needs expressed by the children and adolescents included those related to disease and social concerns. For parents, the majority of informational needs expressed also related to disease concerns. In relation to the importance of information needed, most children and adolescents identified informational needs related to personal (bodily) concerns as most important, whereas most parents identified informational needs related to disease concerns (prognosis) as most important.
sought
°
Discussion
. .
Because this study consisted of a small convenience sample of children and adolescents with and their parents, there.can be minimal generalization. Since the purpose of this study was to identify and describe the informational needs of children and adolescents with cancer and their parents by using semistructured interviews, the results do provide a beginning framework for further exploration by other researchers. cancer
-
Adaptation
to Illness in Adolescents
With Cancer Pamela Hinds, RN, PhD Susan Scholes, RN, BSN, Jami Gattuso, RN, MSN, Melinda Riggins, RN, BSN, and Brenda Heffner, RN, BSN Adaptation to illness is theorized to be a process through which individuals constructively cope with threatening conditions in order to meet their health needs. For adolescents with cancer, adaptation to illness is believed to be a continuous process through which adolescents attempt to deal in a positive way with the demands of the disease and its treatment. Remarkably little is known about the adolescents’ process of adaptation, including its exact form, sequence, and temporal_ nature. The purpose of this study was to describe major components and characteristics of the adaptational _ process as it was experienced by adolescents during their first 6 months of chemotherapy. The conceptual framework for this study was derived from the works of Lazarus and Folkman’ and Murray and Zentner. 2 The process of adaptation to illness in adolescents with cancer was delineated into three major components: physiological adaptation, social adaptation, and’adaptation in morale. The setting for the study was a pediatric comprehensive cancer center that includes a 48-bed inpatient setting and an ambulatory care setting. The study design was a descriptive-correlational, new or
From St. Jude Children’s Research
Hospital, Memphis. TN.
© 1990
by
Association of Pediatric
Oncology Nurses.
Downloaded from jpo.sagepub.com at SETON HALL UNIV on April 7, 2015
