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.
Highlights
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]
The American Academy of Pediatrics (AAP) recommends that patient- and family-centered care is an essential component of good pediatric palliative care practice [8]
Parents of children with life-limiting illness suffer from social isolation due to caregiving tasks, threat of their child being exposed to pathogens, lack of respite care, and frequent hospitalizations [29]
Summary
Pediatric palliative care (PPC) programs typically help children and families with decision-making, communication, psychosocial support, pain and symptom management, and bereavement care [1]. Proponents of PPC have developed a framework to overcome barriers which includes, (1) working at all levels from health centers to governments to increase advocacy and awareness; (2) educating health care and social work professionals at different levels of expertise from a general approach to a specialist level of pediatric palliative care; (3) continuing to address disparity issues regarding access to medications; (4) implementing and evaluating a range of pediatric palliative care service models to meet differing resource, geographic, cultural, and disease-specific need; and (5) prioritizing pragmatic and translational research that acknowledges the need for culturally- and regionally-specific studies to provide medical and social best practices for providers [12]. Providers using a lifespan philosophy of palliative care would offer more holistic care that is closer to the time of a child’s diagnosis of a life-threatening illness [15] This particular barrier to PPC underscores the need for healthcare providers to understand PPC best practices and philosophy, and to continue to implement and refer to services that are holistic, comprehensive, and timely. Intervention research emphasizes healthy and intentional collaborations between healthcare professionals and families [17]
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