The Best Practices in Managing Rare Diseases: Insights from Nursing Perspectives on the Psychosocial and Healthcare Challenges Faced by Affected Children and their Families

Abstract

Background: Rare diseases (RD) present significant challenges for children, their families, and healthcare providers. With varying definitions across regions, these conditions often lead to a myriad of psychosocial issues, including social isolation, stress, and inadequate healthcare access. Understanding the complexities surrounding RD is crucial for improving care strategies and outcomes.

Methods: This study conducted a comprehensive literature review utilizing databases such as Google Scholar and PubMed to analyze peer-reviewed articles related to the psychosocial aspects of managing rare diseases, particularly focusing on the experiences of children with reading disorders (RD) and their families. The search included articles published in English up to 2023.

Results: The findings indicate that children with RD face significant challenges in their family, educational, and social environments, often resulting in mental health issues and diminished quality of life. The review highlighted the necessity for coordinated, multidisciplinary care approaches to address the unique needs of these children and their families. Moreover, it identified gaps in research concerning the perspectives of children themselves and the impact of social determinants of health on their care experiences.

Conclusion: Enhancing the understanding of the psychosocial factors affecting children with rare diseases is essential for developing evidence-based interventions that improve quality of life. There is an urgent need for ongoing research and advocacy to ensure equitable access to resources and support systems for these families, ultimately fostering better health outcomes and experiences for children with RD.