Parents as Advocates for Pediatric Palliative Care. 2021

Blyth Taylor Lord, and Wynne Morrison, and Richard D Goldstein, and Chris Feudtner
Courageous Parents Network, Boston, Massachusetts.

Caring for a child with a serious or life-limiting illness presents many challenges for families and health care providers. Through that experience (and, many times, as it ends), parents are compelled to find and make meaning from their ultimate loss and the many losses along the way. In this Advocacy Case Study, we describe the experiences that led a bereaved mother to seek to harness the insights from her own family's loss to help support other families facing the challenges and complexities of a child's serious illness. Her family initially established a family foundation to advocate for palliative care. She later partnered with her family's general pediatrician and the American Academy of Pediatrics to educate providers and bring parent voices to health care provider discussions. This work eventually led to the development of the Courageous Parents Network, a nonprofit focused on making these parent and provider voices widely available to families and providers through a Web-based collection of videos, blogs, podcasts, and printable guides. Through these insights, the organization addresses feelings of isolation, anxiety, and grief. In addition, these voices illustrate the power and benefits of the growing acceptance of pediatric palliative care practices. Important lessons learned through these efforts include: (1) the power of stories for validation, healing, and understanding; (2) opportunity to extend the reach of pediatric palliative care through provider education and skill-building; (3) critical importance of the parent-provider advocacy collaboration; and (4) necessity of market testing and continuous improvement.

UI MeSH Term Description Entries
D010166 Palliative Care Care alleviating symptoms without curing the underlying disease. (Stedman, 25th ed) Palliative Treatment,Palliative Supportive Care,Palliative Surgery,Palliative Therapy,Surgery, Palliative,Therapy, Palliative,Care, Palliative,Palliative Treatments,Supportive Care, Palliative,Treatment, Palliative,Treatments, Palliative
D010290 Parents Persons functioning as natural, adoptive, or substitute parents. The heading includes the concept of parenthood as well as preparation for becoming a parent. Step-Parents,Parental Age,Parenthood Status,Stepparent,Age, Parental,Ages, Parental,Parent,Parental Ages,Status, Parenthood,Step Parents,Step-Parent,Stepparents
D010344 Patient Advocacy Promotion and protection of the rights of patients, frequently through a legal process. Patient Ombudsmen,Patient Representatives,Clinical Ombudsman,Patient Ombudsman,Advocacy, Patient,Ombudsman, Clinical,Ombudsman, Patient,Ombudsmen, Patient,Patient Representative,Representative, Patient,Representatives, Patient
D010372 Pediatrics A medical specialty concerned with maintaining health and providing medical care to children from birth to adolescence.
D011368 Professional-Family Relations The interactions between the professional person and the family. Professional Family Relationship,Family Relationship, Professional,Family Relationships, Professional,Professional Family Relations,Professional Family Relationships,Professional-Family Relation,Relation, Professional-Family,Relations, Professional-Family,Relationship, Professional Family,Relationships, Professional Family
D002648 Child A person 6 to 12 years of age. An individual 2 to 5 years old is CHILD, PRESCHOOL. Children
D003255 Consumer Organizations Organized groups of users of goods and services. Organizations, Consumer,Consumer Organization,Organization, Consumer
D006117 Grief Normal, appropriate sorrowful response to an immediate cause. It is self-limiting and gradually subsides within a reasonable time. Mourning,Griefs,Mournings
D006801 Humans Members of the species Homo sapiens. Homo sapiens,Man (Taxonomy),Human,Man, Modern,Modern Man
D000072143 Pediatricians Qualified medical professionals specializing in maintaining health and providing medical care to children from birth through adolescence. Pediatrician

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