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Biomedical subjects

Ellen Giarelli

Publications and source records attributed to Ellen Giarelli.

At least 19 recordsLinked to original sources

Relationship of dietary intake to gastrointestinal symptoms in children with autistic spectrum disorders.

BACKGROUND: Gastrointestinal (GI) symptoms and abnormalities in stool consistency are frequently reported by parents of children with autism spectrum disorders (ASD). The purpose of this study was to 1) describe dietary intake of a cohort of children with ASD compared with normative data and 2) determine whether GI symptoms and stool consistency are related to dietary intake. METHODS: Data from diet diaries of children (3-8 years) with ASD (n = 62) were analyzed by a registered pediatric dietician to compare to RDA standards for total calories, protein, carbohydrate, and fat. Dietary intake was correlated with descriptors of stool consistency using cumulative logistic regression methods. RESULTS: Intake of calories, carbohydrates, and fat were in the average range; protein intake was increased (211% of RDA). Reported frequency of GI abnormalities, including abnormal stool consistency (e.g., bulky or loose), was increased (54%). No statistically significant relationships between stool consistency and dietary intake were observed. CONCLUSIONS: In this sample, there was a high rate of reported gastrointestinal symptoms, despite lack of medical causes. Intake was adequate for calories and carbohydrates and increased for protein. The children did not exhibit excessive carbohydrate intake. There was no association of nutrient intake to changes in stool consistency.

Autistic Disorder↗

Self-surveillance for genetic predisposition to cancer: behaviors and emotions.

PURPOSE/OBJECTIVES: To describe the kinds of self-monitoring activities and the emotional responses associated with those activities in patients with a genetic predisposition to multiple endocrine neoplasia type 2a (MEN2a) or familial adenomatous polyposis (FAP). RESEARCH APPROACH: Thematic analysis of the transcripts of patient interviews conducted for two previous grounded theory investigations of participation in lifelong surveillance for patients with cancer predisposition syndromes and their family members. SETTING: In the original studies, participants were recruited through a high-risk gastrointestinal cancer clinic (for FAP) and pediatric and adult endocrinology clinics (for MEN2a) at two eastern U.S. medical centers and by patient referral. PARTICIPANTS: 58 transcripts of interviews with 29 patients; 17 diagnosed with FAP or the variants of Gardner syndrome and attenuated FAP and 12 patients diagnosed with MEN2a. METHODOLOGIC APPROACH: Informants participated in two hour-long, in-depth interviews and completed a self-administered sociodemographic questionnaire. MAIN RESEARCH VARIABLES: Types of self-surveillance activities. FINDINGS: Patients engage in an elaborate set of self-surveillance activities that are grouped into five categories of behavior: Medication Appraisal, Phenotype Tracking, Intake and Output Monitoring, Laboratory and Treatment Recording, and Tracking of Visits. Self-surveillance behaviors are grouped independent of type of syndrome, penetrance, age, or gender of the patient. Each category comprises a variety of behaviors that correspond with treatment recommendations and understanding of the disorder. CONCLUSIONS: Self-surveillance may be driven by a combination of anticipation and the need for control and understanding. INTERPRETATION: Findings from the study could be used to create an assessment tool to evaluate the extent to which patients are involved in day-to-day self-monitoring. Clinicians may use the categories to better understand patients' knowledge deficits and the emotional impact of enhanced vigilance. Self-surveillance activities performed by patients with MEN2a and FAP also may be performed by patients with other cancer predisposition syndromes.

Adenomatous Polyposis Coli↗

Images of cloning and stem cell research in editorial cartoons in the United States.

Through semiotic analysis of manifest and latent meanings in editorial cartoons, the author uncovers how cloning and stem cell research are represented in a popular mass medium. She identified 86 editorial cartoons published in the United States between 2001 and 2004 that referred to cloning and 20 that referred to stem cell research. Cartoonists portrayed people individually 224 times and 4 times in groups of more than 10. Men were portrayed in 64% of cartoons. Stem cell research was depicted as having a potential positive value, and cloning was depicted negatively. Some major messages are that cloning will lead to the mass production of evil, cloning creates monsters, and politics will influence who or what will be cloned. Analyzing popular images can allow access to public understanding about genetic technology and evaluation of public beliefs, preconceptions, and expectations as the public is educated on the use and value of services.

Cartoons as Topic↗

Smoking cessation for women: evidence of the effectiveness of nursing interventions.

The association between cigarette smoke and disease is direct; cigarette smoking is a major cause of disease in the United States. More than 400,000 people die each year as a result of cigarette smoke. Smoking is responsible for almost 90% of all cases of lung cancer. Smoking cessation reduces the risk of lung cancer within five years. Cessation also may reduce the risk of other cancers, such as cancer of the head and neck, pancreas, and esophagus. Smoking causes skin wrinkling and sexual dysfunction, which can be mediated by smoking cessation. Even after a diagnosis of cancer, smoking cessation improves the odds of survival and reduces the risk of developing a second cancer.

Case Management↗

The role of nurses in screening for autistic spectrum disorder in pediatric primary care.

This article addresses the issue of integration of routine screening for autism spectrum disorder (ASD) in pediatric primary care. The relationship between screening and patient outcome is discussed. The ASD screening recommendations of the American Academy of Pediatrics and practical issues associated with their application are then reviewed. Finally, data from a pilot project to prepare nurses to conduct ASD screening during routine pediatric health visits are presented. The authors discuss the role of nurses in establishing systems within pediatric primary care to identify and refer children at risk for ASD.

Autistic Disorder↗

Modifying cancer risk factors: the gene-environment interaction.

OBJECTIVES: To examine the concept of risk modification in the context of cancer prevention. DATA SOURCES: Published articles and research studies on genetic and environmental factors. CONCLUSION: How the environment is defined frames how the gene-environment interaction is studied and understood. The development of a workable model for risk modification flexible enough to be individualized for a patient is an important step in making primary prevention the goal in cancer care. IMPLICATIONS FOR NURSING PRACTICE: Nurses working in cancer care are well placed to advise patients on risk-management strategies, and to increase public awareness of the interdependence of environment and genomics on cancer risk.

Clinical Nursing Research↗

"Not lighting up": a case study of a woman who quit smoking.

PURPOSE/OBJECTIVES: To review the prevalence, incidence, and risks of smoking by American women; to outline services, treatments, and educational options for smoking prevention and cessation; and to present the conceptual link between the epidemiologic and research literature and experiences of one individual in the target population--an adult female former smoker with a 30-year habit who began smoking during her teenage years. DATA SOURCES: Published literature, expert opinion, and an interview with a former smoker--a female healthcare professional who had a 30-year habit. DATA SYNTHESIS: Literature was reviewed and the content was evaluated for relevance, accuracy, and timeliness. The relevant content was augmented with the author's practical experience and applied to the case study to make recommendations. CONCLUSIONS: Oncology nurses may use a number of strategies to assist people to never start or to stop using tobacco products. The most effective strategy begins with collaboration between healthcare professionals and patients and a combination of instruction, counseling, and emotional support. Oncology nurses can participate in grassroots efforts to educate the public about addiction related to tobacco use, provide counseling for patients who smoke, and become actively involved in legislative solutions to the problem of tobacco use. IMPLICATIONS FOR NURSING: Oncology nurses may intervene to affect positive behavioral change and participate in grassroots efforts to educate the public. Substantial resources are available to professionals and patients who wish to quit smoking or prevent tobacco use by friends and relatives. Nurses should take every opportunity to support smoking cessation and tobacco use prevention.

Adolescent↗

A model of survivorship in cancer genetic care.

OBJECTIVES: To propose a shift in the paradigm of survivorship in genetic cancer care. DATA SOURCES: Published articles and, studies. CONCLUSION: Previous models of survivorship are insufficient to address the evolving needs of patients and families with heritable cancers. The construction of a new model of survivorship is needed to address the unique concerns of individuals who have undergone hereditary cancer risk assessment and counseling. IMPLICATIONS FOR NURSING PRACTICE: Health care providers must be familiar with the recommendations for treatment, surveillance, and follow-up care for individuals and families with heritable cancers to maximize their quantity and quality of life.

Adaptation, Psychological↗

Methodological issues in the use of published cartoons as data.

When common understanding of a phenomenon is under investigation, mass media representation in general, and cartoon images in particular, are a useful source of data. Sample selection, data collection, and the analysis of constructed images differ from other kinds of data. Cartoonists may intend to stimulate multiple interpretations among readers. Uncovering these interpretations is essential to understanding public discourse of the phenomenon of interest. Semantic validation is used to assess the degree to which the meanings of text relative to their context are accurately represented. Analysis of the image and text of cartoons has the potential to yield important understanding of public discourse surrounding issues of the public's health and well-being.

Cartoons as Topic↗

Safeguarding being: a bioethical principle for genetic nursing care.

This philosophical inquiry examines the nature of the technology of genetic predisposition testing and its relation to patients as whole persons. The bioethical principles of non-maleficence, beneficence, autonomy and justice are judged insufficient to resolve issues associated with use. A new principle of 'sustained being', drawn from philosophical propositions of Pellegrino, is suggested. The new principle is suited to an evolving practice and is compatible with consequentialist, deontological and relational ethics theories. The notion of 'taking care' is related to nursing in genetic health care to form a standard of conduct and a moral imperative to 'safeguard being'.

Empathy↗

A concept model for individual surveillance in genetic cancer care.

OBJECTIVE: To present the concept of individual surveillance in genetic risk management as a complex collection of other concepts, and to propose a model that represents how these component concepts may relate to each other. CONCEPT: The concept of "individual surveillance" has a set of lexical conditions, called critical attributes, antecedents, and consequence. The attributes are derived from the historical and contemporary use of the word and must be present for conceptualization. Antecedents are conditions that must exist before individual surveillance can occur, and consequences are those events that will always occur after individual surveillance. The popular association of surveillance with real or suspected criminal activity may design a predilection for critical attributes and confuse concept attainment. Before involving patients and family members in surveillance activities, clinicians should explore the subjective meaning of participation. MODEL: The model can be used, by a clinician and a patient, to describe and understand the meaning of individual surveillance for participants in a systematic, holistic, and highly personal way.

Follow-Up Studies↗

Multiple endocrine neoplasia type 2a (MEN2a): a call for psycho-social research.

This paper summarizes what is known about the diagnosis, treatment, and follow-care of people with the inherited disorder multiple endocrine neoplasia type 2a (MEN2a). Several databases were searched throughout the year 2000, including MEDLINE, CINAHL, CancerLit, PsychINFO, and Dissertation Abstracts International. MEN2a is a complex disease involving cancer care and control by surgery, health maintenance, and life-long observation of gene mutation carriers. Genetic testing is the standard of care, prophylactic surgery is recommended during directive counseling, and life-long surveillance is encouraged for people with MEN2a. A substantial body of scientific literature describes morbidity and mortality outcomes of disease treatment, and the monitoring of multiple organ systems. Research is scant concerning the psychological consequences and social impact of the MEN2a diagnosis, treatment, and follow-up. Nearly all that is known from a psycho-social perspective comes from data in The Netherlands. Little is known of the psychological responses to and social consequences of genetic predisposition testing, prophylactic and curative surgery, and life-long surveillance. Psycho-social research is essential to provide comprehensive care for patients and family members with this disorder and it is necessary to guide the development of risk management strategies for patients with this inherited cancer syndrome. Since MEN2a has been labeled a prototype for medical genetics, information on MEN2a patient experiences may be relevant to the care of individuals with other inherited cancer syndromes.

Adaptation, Psychological↗

Prophylactic gastrectomy for CDH1 mutation carriers.

Gastric cancer is difficult to diagnose at an early stage. Signs and symptoms of the disease often only occur when advanced or metastatic disease is present. A very small number of gastric cancers are hereditary. The mutation to the E-cadherin gene has high penetrance and confers a lifetime risk of gastric cancer of 80% for carriers. Because of the high penetrance of the mutation and the difficulty of diagnosing gastric cancer at an early stage, carriers of the mutation may be candidates for prophylactic gastrectomy. Although limited data are available about the complications and outcomes associated with prophylactic gastrectomy, nurses should be knowledgeable about prophylactic surgery for hereditary cancers and prepared to answer patients' questions about their prevention.

Cadherins↗

Bringing threat to the fore: participating in lifelong surveillance for genetic risk of cancer.

PURPOSE/OBJECTIVES: To explain how patients with multiple endocrine neoplasia type 2a (MEN2a) and family members conceptualize participation in lifelong surveillance in genetic cancer care. DESIGN: Qualitative naturalistic inquiry. SETTING: Northeastern United States. Data were collected during interviews in informants' homes. SAMPLE: 12 adult patients and 9 family members were recruited purposively through endocrinology clinics at two East Coast medical centers. METHODS: A grounded theory design was used. Subjects completed a demographic questionnaire and were interviewed on two occasions. In-depth interviews were audiotaped. The core concept and process variables emerged through three levels of narrative content analysis, theoretical sampling, and constant comparison. The generated theory was presented to the participants for validation. MAIN RESEARCH VARIABLES: The basic psychological issue associated with participation in lifelong surveillance and the psychosocial processes used by individuals to deal with the issues. FINDINGS: MEN2a patients and family members experience surveillance as a (Re)Minding of a threat to health. Once threat is brought to the fore, participants interpret the meaning and negotiate control of the impact of the diagnosis, related events, and consequences. Meaningful information from surveillance activities is incorporated into participants' self-image and daily lives through a process of (Re)Integration. The genetic nature of MEN2a did not emerge as a significant subcategory in relation to the core variable. CONCLUSIONS: Finding meaning in the outcomes of surveillance events is a psychosocial process that is central to participation in lifelong surveillance. Genetic predisposition to cancer was a peripheral concern to subjects as they dealt with surveillance issues. IMPLICATIONS FOR NURSING: This investigation provides a model for the development of a grounded theory for understanding how people with other genetic cancer syndromes participate in lifelong surveillance.

Adrenal Gland Neoplasms↗