Transcript Slide 1
By: Jamie K. Dykstra Nursing 317 Ferris State University I have been a pediatric nurse for the past eleven years, and have seen many families in crisis. I often wonder if we as nurses and other healthcare providers are doing enough to help these families. Does the spiritual care that nurses provide adequately prepare siblings and parents for a child's death? I conducted my own research and compared three similar studies to show any similarities in the care we provide throughout the United States and if this care is adequate to address the needs of the families. The focus was to see what was working well and what could be improved upon. “The death of a child is a special sorrow, an enduring loss for surviving mothers, fathers, brothers, sisters, other family member s and close friends. No matter the circumstances, a child’s death is a life-altering experience” (Field, M. and Behrman, R., 2003, p.1). There has been much research done on providing the best spiritual and palliative care for children and their families in these situations. Findings: Children with fatal or potentially fatal conditions and their families often fail to receive competent, compassionate and consistent care that meets their physical, emotional and spiritual needs. Suggestions : Integrating effective palliative care from the time a child’s life-threatening medical problem is diagnosed will improve care for children who survive or die and will help the families of all these children. Develop regional support services for families and professionals in small communities without specialized palliative care. Provide basic and continuing education at all levels on the specific roles of every professional who cares for seriously ill children. Set priorities for research in palliative, endof-life and bereavement services to improve care provided to children and families. Findings: According to Widger,K. ,Steele,R.,Oberle,K., and Davies, B.( 2009) “The highest quality palliative care occurred when there was a valuing of the child and family, when individual human connections were made and continued throughout and following illness and death, when families felt empowered, when some aspects of care were performed for families, when families were supported in their search for meaning in their situation, and when the integrity of each individual and the family as a whole was preserved”(p.209). Palliative care is not where it should be for children and their families. Reasons for this include: uncontrolled pain, parents feeling abandoned, parents opinions not being sought out or listened to, fear of death. Health professionals report that they receive little training and are ill-prepared to effectively and emotionally support dying children and their families, or deal with the ethical issues that may be present at end of life. The suggestion of this study is that health care professionals adopt the Supportive Care Model that consists of six interrelated dimensions: valuing, connecting, empowering, doing for, finding meaning, and preserving integrity. Objective: To profile pastoral care providers’ perceptions of the spiritual care needs of hospitalized children and their parents, barriers to better pastoral care, and quality of spiritual care in children’s hospitals. Method: A mail survey was conducted of pastoral care providers at children’s hospitals throughout the United States, with a 67% response rate from115 institutions. Findings: Pastoral care reported that 50% of patients they visited had spiritual needs regarding feeling anxious, fearful, pain, and relationships with or between their parents. 60-80% of patients parents expressed spiritual needs questioning God and feeling guilt. Barriers to success: Inadequate staffing in pastoral care offices Inadequate training of health care providers to detect patients spiritual needs. Being called in too late to provide all the care that children and families could have been provided. “The chronic illness of a child affects the entire family. Research indicates that having a sibling with a life-threatening illness during childhood contributes to an increased risk of adverse psychological outcomes, including low self-esteem, somatization, school problems, interpersonal aggression with peers and delinquency, feelings of isolation, anxiety, depression and anger”. (Committee on Palliative and End-of-Life Care for Children and Their Families, 2001, p.17) “Children with fatal or potentially fatal conditions and their families often fail to receive competent, compassionate, and consistent care that meets their physical, emotional and spiritual needs.” (IOM report, 2004,p.1) “Parents who experience the death of a child live with the memories, good or bad, for the rest of their lives”. (Widger, K., Steele, R., Oberle, K., and Davies,B., 2009, p.215). Working in a Children’s Hospital myself and using internet searches of other similar institutions, I have identified the following resources commonly provided to families: Social work Child Life Pastoral Care Physicians and Nurses Money (Fees for services often not fully covered) Education (Healthcare workers report little training on spiritual care for dying children and their families or spiritual care in general) Comfort Level Discussing Death Fear Time (Hospital setting, other patients) According to Windger et al (2009), “Health professionals can play a key role in making this experience the best it can be through fundamental valuing of the child and family; connecting with the family on a personal level and continuing this connection throughout and following the child’s illness and death” (p. 215). The research on the topic of supportive, spiritual care for dying children and their families (parents and siblings) is extensive and many resources and programs have been put in place. The recurring themes of inadequate training for nurses and doctors appears to be consistent throughout the United States as does the lack of insurance reimbursement for lengthy office appointments during which this delicate subject could be addressed. This leaves us in an uncomfortable position as care providers. It appears that “jumping” through insurance authorization and dealing with our own feelings as individuals. I have been in nursing for several years and have taken this course in spirituality by choice. After completing this research and reading through the immense work that has been done to help nurses provide spiritual care to families of dying children it is clear that more preparation is needed in nursing school to enable us as nurses to provide the spiritual care that families need. Administrative/Policy Workgroup of the National Hospice and Palliative Care Organization (2001). A Call for Change: Recommendations to Improve the Care of Children Living with Life-Threatening Conditions. Alexandria, VA. Retrieved November 27, 2010). Field, M., & Behrman, R. (2003). When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families (pp. 1-18). Washington D.C.: The National Academies Press. (Original work published 2003) Retrieved November 27, 2010 Feudtner, C., Haney, J., & Dimmers, M. A. (2003). Spiritual Care Needs of Hospitalized Children and Their Families: A National Survey of Pastoral Care Providers' Perceptions. Pediatrics, 111(1), e67-e72. doi:10.1542/peds.111.1.e67 Widger, K., Steele, R., Oberle, K., and Davies,B. (2009). Exploring the Supportive Care model as a framework for Pediatric Palliative Care [Electronic Version]. Journal of Hospice and Palliative Nursing, 11(4), 209-216. (2004). IOM Identifies Ways to Help Dying Children and Their Families. Retrieved November 27,2010.