tailieunhanh - Ebook Pediatric palliative care: Part 2

(BQ) Part 2 “Pediatric palliative care” has contents: Risk and resilience factors related to parental bereavement following the death of a child with a life-limiting condition, trending longitudinal agreement between parent and child perceptions of quality of life for pediatric palliative care patients, and other contents. | children Article Supporting Parent Caregivers of Children with Life-Limiting Illness Kendra D. Koch * and Barbara L. Jones Steve Hicks School of Social Work, University of Texas at Austin, 1925 San Jacinto Blvd., D3500, Austin, TX 78712, USA; barbarajones@ * Correspondence: kdkoch@; Tel.: +1-512-475-9367 Received: 6 June 2018; Accepted: 20 June 2018; Published: 26 June 2018 Abstract: The well-being of parents is essential to the well-being of children with life-limiting illness. Parents are vulnerable to a range of negative financial, physical, and psychosocial issues due to caregiving tasks and other stressors related to the illness of their child. Pediatric palliative care practitioners provide good care to children by supporting their parents in decision-making and difficult conversations, by managing pain and other symptoms in the ill child, and by addressing parent and family needs for care coordination, respite, bereavement, and social and emotional support. No matter the design or setting of a pediatric palliative care team, practitioners can seek to provide for parent needs by referral or intervention by the care team. Keywords: palliative care; special needs; parent; respite; life-limiting illness; caregiver; pediatric; psychosocial; stress; medically complex 1. Introduction: Available and Needed Pediatric Palliative Care Services Pediatric palliative care (PPC) programs typically help children and families with decision-making, communication, psychosocial support, pain and symptom management, and bereavement care [1]. However, as the population of children and families receiving pediatric palliative care services has grown to include those who have life-limiting, complex illnesses, recent research suggests that parents and families may need an expansion of these domains to include care coordination, respite, and education and support for medical complexity [2]. As developments in treatment and technology have led to prolonged .