Sandra Mott

The meaning of cost for families of children with congenital heart disease.

INTRODUCTION The purpose of this study was to describe the cost burden of congenital heart disease (CHD) and the associated social impact as experienced by families. METHOD Qualitative methods were used to collect and interpret data. Semi-structured interviews were conducted with parents of children with various degrees of CHD complexity and socioeconomic status currently admitted for congenital heart surgery at a large tertiary care regional center. RESULTS The meaning of cost burden as defined by participants resulted in the emergence of two major categories, lifestyle change and uncertainty. Cost was described beyond monetary terms and as a result, data in each category were further clustered into three underlying subcategories labeled financial, emotional, and family burden. The childs disease complexity and parents socioeconomic status seem to be linked to higher levels of stress experienced in terms of finances, emotional drain, and family member burden. Prenatal diagnosis was noted to trigger early discussion of financial uncertainty, often resulting in altered personal spending prior to birth. DISCUSSION The cost experienced by parents of children with complex CHD was described as both life-changing and uncertain. Informing families of these types of additional stressors may allow issues of finances to be considered early in the overall preparation of caring for a child with complex CHD.

The Nexus Between Bridewealth, Family Curse, and Spontaneous Abortion Among Southern Sudanese Women

PURPOSE In this study we explored womens experiences with abortion complications in the postwar context of South Sudan. Abortion complications are the leading cause of admissions to gynecology units in major hospitals of South Sudan. Payment of bridewealth by the husband to the womans relatives is critical and a symbolic binding of the commitment between families and clans. Failure by a husband to meet the bridewealth obligation is believed to result in a family curse that may cause abortion or death of children in a marriage. DESIGN Qualitative descriptive design was used to collect data from 26 women treated for abortion complications at a county hospital in South Sudan. In-depth interviews were conducted from March through April 2008. FINDINGS The majority of women in this study, whose husbands had not followed the cultural rules of bridewealth payment, believed that a family curse caused the abortion. The women thought that they would continue to experience spontaneous abortion with subsequent pregnancies until the bridewealth issue was resolved. CONCLUSIONS Cultural beliefs and the status of women in society can hinder access to information on abortion prevention, treatment, and other reproductive health care. CLINICAL RELEVANCE Listening to womens perspectives and providing culturally relevant and gender-sensitive reproductive health interventions is important for effective programming by nurses among diverse cultures globally.

Management of Peripherally Inserted Central Catheters (PICC) in Pediatric Heart Failure Patients Receiving Continuous Inotropic Support

The study aim was to evaluate present practice of maintaining PICC line patency in pediatric heart failure patients receiving continuous inotropes by comparing one cohort receiving low dose continuous heparin with one receiving no heparin. A case control retrospective chart review compared the two cohorts on duration of patency (measured in days) and need for thrombolytic agents. Median duration of patency for the heparin group was 24 days versus 16 days for the no heparin group (p=0.07). Use of thrombolytic agents was 28% in the heparin group compared to 50% in the no heparin group (p=0.08). Although not statistically significant, findings were clinically significant and supportive of current practice.

The pediatric bill of rights.

The pediatric nurses role as an advocate includes safeguarding the interests of children and their families, informing them of their rights and responsibilities, and assisting them in making informed decisions (Kyle & Carman, 2013). To this end, the Society of Pediatric Nurses (SPN) encourages nurses to incorporate and support the utilization of a pediatric-specific bill of rights in the care of children in all healthcare settings. The Pediatric Bill of Rights (second edition, 1996) is a statement of rights to which pediatric patients and their families are entitled as healthcare recipients. The Association for the Care of Childrens Health (ACCH) developed the first Pediatric Bill of Rights (1991) to affirm their mission to ensure familycentered, psychosocially comprehensive, and developmentally appropriate care to children and their families. The ACCHs goal was to inform healthcare providers, parents, and children that recipients of care had basic rights and providers of care had the responsibility to observe and provide for those rights. Since the Bill of Rights was inaugurated, the document has been adapted and adopted nationally by free-standing childrens hospitals and pediatric units within general hospitals (Kyle & Carman, 2013). Many institutions have modified the document to reflect environmental and cultural nuances of their institution. This practice concurs with ACCHs vision that healthcare systems and practices are most effective when planned, coordinated, delivered, and

Introducing Tina Spagnola

Tina Spagnola joined SPN in October 2017. She took over the role of Director of Programs that had been held by Dr. Mary Harper. As Director of Programs, Tina’s primary responsibility is on allmatters related to education. She will provide her knowledge, insight and experience in developing services and products to facilitate member needs. In addition, she will oversee and manage ongoing educational endeavors, such as the annual conference, webinars and publication of guidelines and booklets to support continuing education. SPN is thrilled to welcome her to the organization’s staff and looks forward to working with and learning from her expertise. I am excited to introduce myself; I am Tina Spagnola, MSN, RN-BC, NE-BC, the new Director of Programs for the Society of Pediatric Nurses (SPN). I have 28 years of pediatric experience, 26 which has been spent working in a free-standing pediatric hospital. My clinical background was in the NICU, 15 years spent as a clinical staff nurse before moving into the nursing professional development (NPD) role. I transitioned from the bedside to the NPD role over ten years ago. I held the position of director of a clinical education department for seven years before beginningmynew rolewith SPN.When I served as director, I was involved in the development of our nurse residency program for new graduates, transition fellowship program for adult population nurses becomingpediatrics population nurses. I facilitated growth of the simulation center, the RN-BSN program that assisted the ADN nurse return to school and complete the BSN degree, and supported certification review courses. In essence, I was actively involved in all aspects of nursing clinical education. I am excited about my new role with SPN as it allows me to work within two of my favorite practice settings: pediatrics and nursing professional development. My current certifications include Nursing Professional Development and Nurse Executive. My master’s degree is in nursing leadership and education. This is a particularly energizing time to be with SPN. The rollout of the SPN Online Education Center and of newproducts provides the pediatric nursewith several resources to develop knowledge and specialty practice. If you haven’t been on the SPN website (www.pedsnurses.org) recently take the opportunity to

Using Data to Drive Improvement and Build the Science of Nursing

The science and practice of pediatric cardiovascular nursing has made substantial progress since the 1970s. The use of evidence to drive clinical care has demonstrated improvement in patient outcomes including morbidity and mortality. In addition multiple, concurrent events, including dramatic innovations in technologies, medical treatment discoveries, novel surgical procedures, nursing clinical inquiry and organizational support have contributed to increasing health care quality.