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Ethical dilemmas in the pediatric hemophilia community
1Olsten Health Services, Melville, NY, USA. jschaefer@mindspring.com
Insights
Pediatric nurses can advocate for children with hemophilia by understanding their needs and empowering patient self-advocacy. This approach fosters better home care and informed decision-making within evolving healthcare systems.
Area of Science:
- Pediatric Nursing
- Hematology
- Healthcare Advocacy
Background:
- Children with hemophilia have significantly benefited from comprehensive care teams and home treatment models.
- The success of hemophilia community self-advocacy is evident in the widespread adoption of home care and self-infusion practices.
- Federally funded centers of excellence for hemophilia are supported by public and patient contributions, highlighting community investment.
Purpose of the Study:
- To explore how pediatric nurses can effectively advocate for patients with hemophilia in a dynamic healthcare landscape.
- To stimulate discussion among parents, healthcare providers, and payers regarding optimal care strategies for hemophilia patients.
- To examine hemophilia care programs as a potential model for self-care in other chronic pediatric conditions.
Main Methods:
- This is a commentary, raising questions for discussion rather than presenting empirical data.
- It draws upon existing knowledge and the demonstrated success of the hemophilia community's advocacy efforts.
- The commentary encourages a review of current practices and future directions in pediatric hemophilia care.
Main Results:
- The commentary posits that enhanced advocacy by pediatric nurses is crucial for patients with hemophilia.
- It highlights the importance of parental and patient self-advocacy in maintaining high standards of home care.
- The success of the hemophilia community serves as a precedent for patient empowerment in chronic disease management.
Conclusions:
- Pediatric nurses must be knowledgeable advocates for hemophilia patients within the current healthcare system.
- Empowering parents and patients through self-advocacy is key to sustained excellence in hemophilia home care.
- Hemophilia care models offer valuable insights for developing preventive self-care strategies in other chronic pediatric diseases.
Abstract:
How can pediatric nurses best advocate appropriately and knowledgeably for patients with hemophilia in our rapidly changing health care system. This commentary raises many questions, questions that can provide the basis for discussion among parents, providers, and payors. Children with hemophilia have benefited greatly by the creation of comprehensive care teams that support home treatment (Butler, 1998). Ongoing excellence in home care can be achieved by parents' and patients' self-advocacy. The hemophilia community's self-advocacy has been so successful as demonstrated by the move to home care, self-infusion, and the Ricky Ray legislation. This community has an ownership of its preventive care and recognizes that federally funded centers of excellence exist by the use of the family's tax dollars and the patient's patronage. Hemophilia programs are a model for further examination for preventive self-care in other chronic disease states.