The AAP Resilience in the Face of Grief and Loss Curriculum.

A career in pediatrics can bring great joy and satisfaction. It can also be challenging and lead some providers to manifest burnout and depression. A curriculum designed to help pediatric health providers acquire resilience and adaptive skills may be a key element in transforming times of anxiety and grief into rewarding professional experiences. The need for this curriculum was identified by the American Academy of Pediatrics Section on Medical Students, Residents and Fellowship Trainees. A working group of educators developed this curriculum to address the professional attitudes, knowledge, and skills essential to thrive despite the many stressors inevitable in clinical care. Fourteen modules incorporating adult learning theory were developed. The first 2 sections of the curriculum address the knowledge and skills to approach disclosure of life-altering diagnoses, and the second 2 sections focus on the provider's responses to difficult patient care experiences and their needs to develop strategies to maintain their own well-being. This curriculum addresses the intellectual and emotional characteristics patient care medical professionals need to provide high-quality, compassionate care while also addressing active and intentional ways to maintain personal wellness and resilience.

Single parents of children with chronic illness: an understudied phenomenon.

OBJECTIVE: To examine the chronic illness literature and evaluate the impact on single parenting and children and adolescents with chronic illness. METHODS: We conducted literature reviews of relevant research pertaining to single-parent families on PubMed, Medline, and PsychINFO and also surveyed pertinent book chapters and all of the articles from the Journal of Pediatric Psychology since 1987 for articles, specifically examining the potential associations of single (lone) parenting versus two-parent households on children's psychosocial functioning and the impact of the child's illness on caregiver functioning. RESULTS: While the literature has examined and discussed the stressors associated with parenting a child with an illness, including the impact of illness on finances, family roles, and caregiver burden, few studies have examined single parents of children and adolescents with chronic illnesses and related stressors stemming from being a lone caregiver. CONCLUSIONS: There is a dearth of studies examining the association between lone parenting and psychosocial functioning among children and adolescents with chronic illnesses. Specific questions necessitating future investigation are summarized and recommendations are made for future research in this important area of inquiry.

Do clerkship experiences affect medical students' attitudes toward chronically ill patients?

PURPOSE: To measure changes in medical students' attitudes toward chronically ill patients, and to identify experiences, specifically during clerkships, that contributed to students' attitudes. METHOD: A cohort of students from five U.S. medical schools voluntarily participated in three surveys longitudinally administered before and after required clinical rotations. The first two questionnaires were identical and asked for demographic information and pre-matriculation experiences with chronically ill patients. The third was modified to include questions about clinical experiences with chronically ill patients. Responses from the first and third questionnaires were linked for analysis. RESULTS: A total of 502 of 695 students (69%) completed both the first and the third questionnaires. Many students (36%) had had pre-matriculation experiences with chronic illness. After clinical training, 25% of the respondents stated that they would seek another career specialty if the incidence of chronically ill patients increased in their chosen field, compared with the 9% who responded so before clinical training (p <.001). While 73% of the students had favorable perceptions toward chronically ill patients, and 91% felt involved in care, significantly fewer students (p <.01) had had positive patient care experiences when working with residents (57%) and attendings (59%). Gender, age, prior experiences, and school site were not associated with attitudinal changes. CONCLUSION: Students begin medical school with positive attitudes toward caring for chronically ill patients, but this perception depreciates with clinical experience, which may affect specialty decisions. Contributing factors may include adequate role modeling by residents and attendings and a perceived discrepancy in the quality of care patients receive.

What did we learn about national organizational collaboration at the advisory committee level?

This article provides an overview of the typical roles and tasks of advisory groups in general, followed by a discussion of the roles and tasks the Interdisciplinary Generalist Curriculum (IGC) Project Advisory Committee was asked to assume and how these were fulfilled. It analyzes the lessons learned about advisory committees as a result of the IGC Project experience. Key elements of success in fulfilling advisory committee obligations include well-defined expectations, periodic evaluations, and clear communication between project leadership and the members of the advisory committee. In the spirit of lessons learned from the IGC Project, this critique identifies several philosophical and logistic issues that might be considered in the design and implementation of future projects, such as the need to choose committed, high-energy advisory committee members who are willing to perform many complex, time-consuming tasks.

Medical education about end-of-life care in the pediatric setting: principles, challenges, and opportunities.

OBJECTIVE: To identify the opportunities for and barriers to medical education about end-of-life (EOL) care in the pediatric setting. METHODS: A working group of pediatric specialists and ethicists was convened at the National Consensus Conference on Medical Education for Care Near the End-of-Life sponsored by the Open Society Institute's Project Death in America and the Robert Wood Johnson Foundation. The charge to the working group was to consider the unique aspects of death in childhood, identify critical educational issues and effective instructional strategies, and recommend institutional changes needed to facilitate teaching about EOL care for children. CONCLUSIONS: Although providing EOL care can be challenging, the cognitive and psychologic skills needed can be taught effectively through well-planned and focused learning experiences. The ultimate goals of such instruction are to provide more humane care to very sick children, enhance bereavement outcomes for their survivors, and develop more confident clinicians. Six specific principles regarding EOL care in the pediatric setting emerged as essential curricular elements that should be taught to all medical care providers to ensure competent patient-centered care. 1) Cognitively and developmentally appropriate communication is most effective. 2) Sharing information with patients helps avoid feelings of isolation and abandonment. 3) The needs of the patient are served when the ethical principles of self-determination and best interests are central to the decision-making process. 4) Minimization of physical and emotional pain and other symptoms requires prompt recognition, careful assessment, and comprehensive treatment. 5) Developing partnerships with families supports them in their caregiving efforts. 6) The personal and professional challenges faced by providers of EOL care deserve to be addressed. These principles actually transcend patient age and can be used to inform medical education about the care of any terminally ill patient. Similarly, these principles of effective communication, ethical decision-making, and attention to the quality of life of patients, families, and providers apply to the care of all children regardless of diagnosis and prognosis. With this in mind, teaching about EOL care does not require a new and separate curriculum, but rather taking better advantage of the many teachable moments provided by caring for a dying patient.

Sibling Adaptation to Childhood Cancer Collaborative Study: the association of sibling adaptation with maternal well-being, physical health, and resource use.

This multi-institutional study investigated the association of behavioral/emotional adaptation among siblings of children with cancer with maternal general well-being, physical health, and resource use. One hundred seventy siblings and mothers completed standardized interviews and self-report measures 6 to 42 months after the cancer was diagnosed. As a group, mothers of children with cancer reported significantly lower levels of well-being than matched controls. When stratified according to the level of the sibling's behavioral/emotional adaptation, mothers of siblings in the Dysfunctional group (1) reported the lowest levels of well-being; (2) during the preceding year, were more likely to have sought professional services than mothers of children in the Resilient group; and (3) were least likely to have found social support helpful. Our results support an association between maternal well-being and sibling adjustment but show it is unlikely that nonspecific social support will improve adjustment. The rationale for problem-solving training for mothers is provided.

Sibling adaptation to childhood cancer collaborative study: health outcomes of siblings of children with cancer.

OBJECTIVE: This seven-site study examined the overall health status, healthcare utilization, somatization, and health-risk behaviors of siblings of children with cancer compared to these factors in matched controls or normative data. The study also examined whether informants (i.e., siblings, parents, physicians) differed in their assessments of the above health domains. DESIGN: Subjects were 254 siblings of children with cancer from seven different pediatric oncology treatment centers that participated in the Sibling Adaptation to Childhood Cancer Collaborative study group. Predictors of the siblings' health status, healthcare utilization, somatization, and health-risk behaviors were identified, and the relationship between these health domains and the siblings' resiliency vs. dysfunctionality were explored via interviews. RESULTS: Overall, siblings were found to be moderately healthy, although siblings report significant problems with sleeping and eating. Healthcare utilization appears to be reduced for siblings. Most importantly, the parents of these siblings are less likely to seek medical help for a variety of conditions for which parents of control children would bring their children to a doctor. A pattern emerged of parental underreporting of sibling health variables when compared to what the siblings themselves reported. When the relationship between health outcomes and the siblings' adaptation to their sick sibling's illness was examined, the resilient and dysfunctional groups significantly differed from each other. It appears that health outcomes are related to sibling adaptation to the changes brought about by their sick sibling's cancer diagnosis and treatment. CONCLUSIONS: The focus of care for families of children with cancer is often limited to the child with cancer. As indicated in this study, the "healthy" siblings may be overlooked in the process. While parents appear to recognize that their "healthy" children are complaining more about aches and pains, they may have little energy or time to attend to the needs of these other family members. It is the intent of this study to document what clinicians may expect and to highlight the need for evaluation of this otherwise neglected group.

The pediatric clerkship director. Support systems, professional development, and academic credentials.

Since the advent of the clerkship at The Johns Hopkins Medical School in the late 19th century, this model has been the backbone of clinical training for medical students throughout the world. Despite the pervasiveness of clerkships, little information exists about the faculty that oversees them administratively. We documented the reported academic credentials, professional development, and support systems for pediatric clerkship directors in the United States and Canada. Our findings should be useful to clerkship directors and department chairpersons across disciplines.

Sibling adaptation to childhood cancer collaborative study: siblings' perceptions of the cancer experience.

Investigated responses of siblings (N = 254) of children with cancer to structured interviews designed to elicit thoughts and feelings about effects of cancer on self and family. Siblings indicated distress about family separations and disruptions, lack of attention, focus of family on the ill child, negative feelings in themselves and family members, cancer treatments and their effects, and fear of death. Siblings also reported becoming more compassionate, families becoming closer, and having experiences they otherwise would not have had. Age and gender differences in responses indicated distinctive perceptions of and vulnerability to the cancer experience. Older siblings were far more likely to report positive effects than younger siblings suggesting that level of maturity can moderate the stress of an ill child within the family.

Sibling adaptation to childhood cancer collaborative study: prevalence of sibling distress and definition of adaptation levels.

A multisite collaborative study assessed the frequency and intensity of emotional/behavioral distress in siblings of children with cancer. A sample of 254 siblings, aged 4 to 18 years, and their parents completed interviews and self-report measures 6 to 42 (average 22.5) months after diagnosis of cancer in a brother or sister. Matched controls were obtained from respondents to the Child Health Supplement of the National Health Interview Survey administered in 1988 (CHS88). Before diagnosis, the prevalence of parent-reported emotional/behavioral problems among siblings was similar to that in the general population (7.7% vs 6.3%; p = not significant). After diagnosis, prevalence rose to 18% among siblings. When siblings were grouped according to the presence or absence of problems exacerbated by and/or arising after diagnosis, four levels of adaptation, consistent with scores on the Behavior Problem Scales from the CHS88, emerged. This differentiation may help explain inconsistencies in sibling response reported previously and provides a framework for investigating factors that enhance adaptation.

Medical students' experiences with and perceptions of chronic illness prior to medical school.

Concerns have been expressed about the failure of the medical curriculum to address the health-care needs of the chronically ill. It has been shown in the literature that medical students develop cynicism and negative feelings towards chronic illness as they progress through their training, perhaps as a result of the attitudes and frustrations of their teachers. What has been inadequately addressed are the experiences with and perceptions about chronic illness that medical students have before entering medical school. Some recommendations are made for curriculum changes based on the findings reported.