Pediatric palliative care-child life beyond the hospital

Pediatric palliative care-child life beyond the hospital

Case C; Fisher J M

Pediatrics

2018

bereavement; ceremony; child; child parent relation; childhood; conference abstract; controlled study; coping behavior; education; emergency care; health care need; home visit; human; memory; palliative therapy; psychosocial care; respite care; sibling; skill; voice

Program Goals: Historically Child Life Specialists (CCLS) have done the majority of their work in healthcare settings such as pediatric acute care hospitals and clinics. As children are living longer with chronic diseases, CCLS are using their knowledge and skills to provide innovative care in Pediatric Palliative Care and home settings. Evaluation: Using fundamental skills of therapeutic relationship building and play-based communication, CCLS are able to assess needs and provide interventions that meet the unique needs of each child and family member throughout their continuum of care. In this setting, we have the freedom of time, often over a period of several months and even years. We may spend time with the patient/ family during respite care, home visits, holiday events and other occasions. The Child Life Assessment includes factors such as the child's growth and development, physical strengths and limitations, diagnosis, treatment, communication methods, coping skills, family systems, cultural beliefs, community support/resources and other health care, family and child variables. First and foremost our goal is to let the child be a child and have everyone understand and support the strengths of each child. This relationship specifically allows each child and family to establish goals of care unique to their child and advocate well throughout the continuum of care. CCLS can then offer support and maintain the child's developmental milestones despite their medical challenges. The CCLS can also reaffirm the child's life, life review and life closure when the time is right. Also important, CCLS can help siblings to have a voice that is respected and honored in the family and facilitate opportunities to continue this role throughout their childhood. We can also support and nurture parenting through the tough times and as developmental change occurs with both affected children and their siblings. CCLS provide psychosocial support to facilitate expression of thoughts and feelings, self-expression, legacy leaving and memory making. We involve children in discussions and decisions about their medical condition and treatment when medically appropriate, and provide tools to enhance their coping strategies. We provide bereavement opportunities for the dying child and the whole family.

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