Adolescents with life-limiting illnesses have intensive end-of-life trajectories and could benefit from initiation of hospice services. The medical home model, which includes having a usual source of primary care, may help facilitate quality outcomes…
Over 42,000 children die each year in the United States, including those with intellectual disability (ID). Survival is often reduced when children with intellectual disability also suffer from significant motor dysfunction, progressive congenital…
Background: Pulmonary arterial hypertension (PAH) is a terminal disease that can be diagnosed in children and adults. Adverse effects of treatment combined with a terminal illness can lead to a plethora of unmet patient needs that can be addressed by…
Children with serious, complex medical or life-threatening conditions and their families often fail to receive effective, consistent, timely, and competent care that meets their physical, emotional, and spiritual needs. Enhancing both basic education…
This paper describes the key behaviors of "excellent" pediatric healthcare providers - a term used by fathers of children with complex, life-threatening illness to describe providers who consistently and effectively engage in family-centered care for…
Research conducted using the Haley Transcultural Strengths Assessment Interview Guide used in several studies has identified 11 sources of strength routinely utilized by parents caring for their child with intensive needs and child in…
In 2010, forgoing curative therapies were removed as a hospice eligibility criterion for children through section 2302 of the Patient Protection and Affordable Care Act called Concurrent Care for Children. Given that concurrent care is a federally…
This study was conducted to determine neonatal intensive care unit (NICU) nurses' opinions about the palliative care needs of neonates with multiple congenital anomalies. The study sample consisted of the 20 nurses who agreed to participate in the…
There is a growing population of children with complex chronic conditions (CCCs) whose caregivers would benefit from palliative care (PC). However, little is known about caregivers' PC awareness. We aimed to describe PC awareness among caregivers of…
The COVID-19 pandemic has caused health care facilities to restrict visitors for patients in all care settings. Most pediatric care facilities have restricted visitation to one parent at a time, unfortunately even if the child is in critical…
The benefits of palliative care services have been widely documented; however, many organizations are unable to financially support the number of professionals needed to meet the growing demand. Nurses receive minimal training in palliative care, and…
Reiki is often used but not well studied in children. Yet, this gentle, light-touch therapy promotes relaxation and is appropriate for those receiving palliative care. This quasi-experimental pre-post mixed-methods 1-group pilot study examined the…
The use of advance directives is an important component in helping individuals living with chronic and/or life-threatening illnesses establish goals of care and make decisions regarding care at the end of life. Advance care planning may help achieve…
Pediatric palliative care is aimed at pain and symptom management, reducing hospitalization, promoting psychosocial care, and improving quality of life for children with serious illness. As a professional caregiver, nurses play an essential role in…
Families of children receiving palliative care depict lack of respite services as a top unmet need. Although the benefits of access to respite services are notable, little is known on a state-by-state basis about respite provision or funding. The…
Little is known about how nursing care at the end of a child's life impacts long-term parental bereavement. We aimed to explain, contextualize, and examine comparisons between quantitative trends in children's end-of-life care and parents'…
This study aimed to identify parental needs for pediatric palliative care and obtain their opinions on developing pediatric palliative care in South Korea. This qualitative research design used inductive and deductive methods. The data were collected…
The social determinants of comfort describe structural conditions that influence whether, to what degree, and in what forms comfort measures are offered to and accepted by people living with serious illness and their families. The notion of social…
Abstract
Over 4 decades, short- and long-term survival for children with congenital heart disease (CHD) has significantly increased. Those with complex CHD have a 1-year mortality rate of approximately 25%. Prenatal access to palliative care ensures…
Palliative Extended and Care at Home (PEACH) is a rapid response nurse-led package of care mobilized for palliative care patients who have an expressed preference to die at home. This study aimed to identify the demographic and clinical predictors of…
End-of-life (EOL) care in pediatrics is a unique subspecialty lacking adequate provider education and training. Patient and family outcomes may improve when clinicians are provided with training in this care. Recognizing the need for this specialized…
This scoping review aimed to explore the characteristics of neonatal palliative care in the neonatal intensive care unit, including the features, contents, and experiences of infants, parents, and nurses during palliative care. Five databases…
There is a dearth of information on the role of the pediatric palliative advanced practice registered nurse (APRN) reported in the literature, and yet, the role is expanding. Advances in technology and health care are helping children with medical…
