فهرست مطالب مرجان بناءزاده

Parental participation in decision-making for neonates with life-threatening conditions is morally and ethically approved. The health care team in the neonatal intensive care units is not prepared to involve parents in these decisions. Identifying factors affecting parental participation in decision-making can lead to removing the barriers and improving parents’ participation. The present study aimed to identify organizational factors influencing parents’ participation in decision-making for neonates with life-threatening conditions.

This study is part of a comprehensive project based on Corbin and Straus’s approach to grounded theory (GT) methodology (Corbin & Strauss, 2015) explored the process of parental participation in DM for neonates with LTC. Participants included 23 people (10 parents, 10 healthcare providers, 1 official in the Neonatal Health Office of the Ministry of Health and Medical Education, 1 professor of Jurisprudence and Principles of Islamic Law, and 1 insurance agent). The study field included level III neonatal intensive care units of 4 teaching hospitals. Data were collected using in-depth, semi-structured interviews and observation and simultaneously were analyzed through constant comparison utilizing the approach of Corbin and Strauss, 2015. The core category and the related categories reflecting contextual and structural factors, parents’ strategies, and the outcome of the adopted strategies were identified. The contextual and structural classification reflected various factors affecting parents’ participation in DM. Since it was impossible to publish all findings in one article, the current study focused on the organizational factors influencing parents’ participation in DM.

Organizational factors affecting the process of parental participation in decision-making consisted of 5 main categories, including 1) power imbalances, 2) ethics committees’ deficiencies, 3) hospital regulations deficiencies, 4) resource constraints, and 5) ongoing hospitalization, the only choice. 

Organizational factors play an important role in parental participation in decision-making. Providing parents of neonates with life-threatening conditions with accommodation and, developing instructions to encourage the presence of parents in the hospital, creating rules for selecting NICU nurses is necessary. Employing an interdisciplinary team of psychologists, social workers, and trained individuals to provide parents with spiritual care is recommended. Appointing hospital ethics committees to investigate cases of critically ill infants and employing experienced and knowledgeable ethicians about the end-of-life issues in these committees are also recommended. </div>

In recent years، the number of children with incurable diseases and their EOL care requirements has increased alongside the developments in technology. Throughout history، nurses have sought ways to improve EOL care. Gaining an increased understanding of nurses’ perceptions of changes that would facilitate appropriate EOL care is important to improve quality care. This study، therefore، was conducted to determine pediatric nurses’ perceptions of intensity، frequency of occurrence of supportive behaviors in providing pediatrics EOL care. Using a translated modified version of (NSCCNR-EOL) questionnaire perception of 151 convenient nurses of supportive behaviors intensity and frequency was assessed. The highest/lowest PSM scores belonged to items respectively: “providing a peaceful، dignified bedside scene for family members once the child has died” (5/75) in health – care professional related category and “letting the religious leader take primary care of the grieving family” (1/08) in organizational related category. Some demographic characteristics of nurses including family and close friends'' death experience (P=0/01)، number of dying children cared for (P=0/01) and previous education toward death and dying (P=0/01، 0/04، 0/04) was positively correlated with PSM scores. The result may indicate a long distance between what nurses believe to be facilitating and what actually happens. Creating a reflective narrative environment in which nurses can express their feelings about death and dying may be an effective approach. A continuing palliative care education adding to nursing curriculum can improve the EOL care quality.

Development in technology and pharmaceutical treatments have increased the number of children with life threatening conditions as well as their end of life care requirements. These children and their families require comprehensive and appropriate end of life care. Nurses are faced with challeng in their efforts to provide end of life care. This study was aimed to assessment of Barriers in providing end of life care to terminally ill pediatric patients in kerman hospital. In a descriptive analytic study،151 nursing staff were Selected with Purposive sampling. A translated modified version of (NSCCNR-EOL) and demoghraphic questionnaire was used to data collection. The highest perceived barrier magnitude score was «families not accepting poor child prognosis” (5/40) and the lowest perceived barrier magnitude score belonged to the item “Continuing to provide advanced treatment to dying child because of financial benefits to the hospital” (2/09). Between Participants’ family and closed friends’ death experience positively correlated with perceived organizational-related barriers magnitude (p=0/02). Also participants’ nursing experience positively correlated with perceived health-care professional related barriers magnitude (p=0/02). The study findings showed that lack of education and experience as well as some cultural and professional limitations may have contributed to some deficiencies in providing end of life care. So developing end of life and Palliative care education may enhance nurses’ knowledge and skill to face the challenges of end of life care. Establishing Palliative care units in the community as well as developing of palliative home care programs that focus on family members، who play an important role in children’s care may have positive effect on pediatric end of life care.