Factors Associated with Self-Injurious Behaviors in Children with Autism Spectrum Disorder: Findings from Two Large National Samples.

In this study, we explored potential associations among self-injurious behaviors (SIB) and a diverse group of protective and risk factors in children with autism spectrum disorder from two databases: Autism and Developmental Disabilities Monitoring (ADDM) Network and the Autism Speaks-Autism Treatment Network (AS-ATN). The presence of SIB was determined from children's records in ADDM and a parent questionnaire in AS-ATN. We used multiple imputation to account for missing data and a non-linear mixed model with site as a random effect to test for associations. Despite differences between the two databases, similar associations were found; SIB were associated with developmental, behavioral, and somatic factors. Implications of these findings are discussed in relation to possible etiology, future longitudinal studies, and clinical practice.

Attitudes antecedent to transition to self-management of a chronic genetic disorder.

Marfan syndrome (MFS) is the exemplar of chronic genetic disorders that require multiorgan system management by health care providers (HCPs) and lifelong self-management by affected individuals. This article describes the ways to facilitate transition to self-management (TSM) by the adolescent with MFS. This thematic content analysis uses data collected for a larger grounded theory investigation of TSM of a chronic genetic disorder in adolescents and focuses on the system issues related to transition. A total sample of 107 included three groups of participants: parents (n = 39), adolescents (n = 37, ages 14-21 years) and young adults (n = 16, ages 22-34 years) with MFS, and HCPs (n = 15), including physicians, genetic counselors, and nurses. Data were derived from 180 transcripts of audiotaped interviews and a sociodemographic survey. Frames of mind that are antecedent to transition were belief in the diagnosis, wanting to understand and appreciate the cause and effect of MFS, and willing to share responsibility in problem solving. These frames of mind occurred primarily within the context of the family relationship. Parents taught children self-surveillance as 'listening to one's body'. The parent's fears and need to stay involved in the child's health care slowed the child's independent work on self-management responsibilities. A systematic, institutionalized transition program for adolescents might involve parents and the child soon after diagnosis and incrementally build acknowledgment, understanding, and rapport.

The silent epidemic: tobacco and the evolution of lung cancer and its treatment.

Considered a rare disease during the 19th century, lung cancer became the most virulent and lethal cause of cancer mortality by the end of the 20th century. In this paper, lung cancer and its treatment are addressed within the social, cultural, economic, and political context of the last century. Because lung cancer is related to the consumption of cigarettes, the battles over tobacco control are highlighted. Four time periods are addressed: the early years (1900-1930), beginning of the epidemic (1930-1960), defining the problem (1960-1980), and expanding options (1980-1990s). Although improvements have been made in science and technology, attempts at finding curative treatments have met with little success. Smoking cessation and efforts to control tobacco (especially among children and adolescents) remain the most important factors if the incidence of lung cancer is to be curtailed in the future. Providing care to individuals with the illness is a current challenge. Research examining the efficacy of treatments and their effect on survival, health-related quality of life, and cost outcomes is essential and can be best achieved through the efforts of multidisciplinary teams.

Ethical issues in genetic testing. The experiences of one family diagnosed with an inherited cancer syndrome.

This article describes selected ethical issues faced by members of a family with genetic predisposition to the cancer syndrome multiple endocrine neoplasia type 2a. The bioethical principles of autonomy, nonmaleficence, beneficence, and justice are the moral guides for nurses and other health professionals, who may apply them to help patients, family members and peers resolve ethical issues and moral dilemmas. Sometimes, however, issues that are morally problematic cannot be settled by simply referring to standards of practice and bioethical norms. In these cases all stakeholders must struggle together to resolve the conflict.

SNAP-shots: scenes from nursing action plans--the cultivation of leadership in oncology nursing.

PURPOSE/OBJECTIVES: To describe the experiences of oncology nurses who participated in a national workshop to prepare nurses to lead the transformation of cancer care and to illustrate the range of possibilities available to nurses motivated to affect positive change. DATA SOURCES: Literature on leadership and negotiation are referenced and related to the personal experiences and the observations of participants in the workshop. DATA SYNTHESIS: Leadership is presented in historical context. A case study approach was used to organize the personal accounts of participants' plans to affect positive organizational change in oncology care settings. Scenes from action plans illustrate how the workshop's core curriculum, which focuses on leadership models, processes, and skills, was realized in practice. CONCLUSIONS: Leadership is a dynamic process that shapes and is shaped by all stakeholders during the process of planned change. Education, risk taking, and active participation are vital components of the process of leadership development. IMPLICATIONS FOR NURSING PRACTICE: The contributions of nurses may be simple of complex and affect single individuals, groups, or institutions. In all cases, oncology nursing practice and cancer care may be enhanced.

Issues related to the use of genetic material and information.

PURPOSE/OBJECTIVES: To review issues regarding the use of genetic materials and information. DATA SOURCES: Professional literature, regional and federal legislation. DATA SYNTHESIS: An analysis is provided of the relationship among advances in genetic technology, use of genetic material and information, and the development of laws that protect the interests of donors, researchers, and insurers. Rapid technological achievements have generated complex questions that are difficult to answer. The Human Genome Project began and the scientific discoveries were put to use before adequate professional and public debate on the ethical, legal, social, and clinical issues. The term "proper use" of genetic material and information is not defined consistently. An incomplete patchwork of protective state and federal legislation exists. CONCLUSIONS: Many complicated issues surround the use and potential misuse of genetic material and information. Rapidly advancing technology in genetics makes it difficult for regulations that protect individuals and families to keep pace. IMPLICATIONS FOR NURSING PRACTICE: Oncology nurses need to recognize their role as change agents, understand genetic technology, and advocate for patients by participating in the debate on the proper use and prevention of misuse of genetic material and information.

Spiraling out of control: one case of pathologic anxiety as a response to a genetic risk of cancer.

The threat of cancer can result in an existential crisis characterized by feelings of uncertainty and fear. Anxiety, the most common response to the threat of cancer, may be expressed in ways as varied as individual personalities and circumstances. It is a normal response to the threat of cancer, but in some it may deteriorate to pathologic anxiety and manifest somatic or avoidant patterns. Members of families diagnosed with genetic mutations that predispose to cancer are unique in that they experience a complex chain of life events. People affected with genetic mutations that increase the risk for the development of cancer may be at greater risk of manifesting abnormal anxiety. Little research exists that can guide the health professional in meeting the needs of these individuals, which leads health practitioners to approach their needs on the basis of combined theoretical assumptions about the needs of people with cancer, people who have family members with cancer, and people with recurrent cancer. Some factors may be assessed by the health professional as an aid in identifying an individual at increased risk of developing a psychopathology. These factors include age and developmental level, existence of a previous psychologic disorder, and family integrity. Advanced practice nurses may effectively intervene in the care of these patients by (a) accurately assessing the risk for and extent of the anxiety reaction in individuals and family members; (b) developing management plans that include ongoing support, education, psychotherapy, and pharmacotherapeutics for the individual; and (c) support and psychotherapy for the family. In this article, the pathologic anxiety experienced by one adolescent girl diagnosed with a genetic mutation that caused multiple endocrine neoplasia 2a is addressed, along with the treatment of her avoidant anxiety disorder--trichotillomania.

Prevention of smoking among adolescent girls: health promotion strategies for nurses.

Adolescent girls experience a range of interpersonal pressures that affect their health and development. Their identities are linked to where they live, what they believe, how they learn, and how they view themselves. Efforts to influence the behavior of adolescent girls must address and draw from this full range of experiences. Cigarette smoking is associated with multiple social and personal risks, and the prevalence is rising in this population. School nurses can combine concepts from the Health Beliefs Model and Social Learning Theory to reach out to and teach adolescent girls the risks of smoking and develop health-promoting behaviors.

Medullary thyroid carcinoma: one component of the inherited disorder multiple endocrine neoplasia type 2A.

PURPOSE/OBJECTIVES: To describe and discuss the inherited syndrome multiple endocrine neoplasia (MEN) and one of its components medullary thyroid carcinoma. DATA SOURCES: Published books and articles; clinical experience. DATA SYNTHESIS: Three distinct types of MEN are known. Type 2a consists of medullary thyroid carcinoma, pheochromocytoma, and other conditions. The disorder is autosomal-dominant. Genetic counseling and screening and biochemical screening are possible. Early detection and treatment are key to successful control. CONCLUSIONS: Identification of kindreds affected by this inherited disorder can result in improved detection and early treatment. The merit and value of presumptive treatment remain unclear. IMPLICATIONS FOR NURSING PRACTISE: Nursing activities encompass prediagnosis through postoperative phases. Care involves all members of the family as well as psychological care.