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GLIDE researchers have issued a call for papers for a special issue of the Monash Bioethics Review: Ethical, Practical and Systemic Challenges Facing Children with Complex Chronic Conditions: A Global Health Perspective.
Children with complex chronic conditions (CCCC) are a group of children who experience fragility, functional limitations, high healthcare service needs, and high healthcare utilisation. These children are considered a vulnerable population requiring both planned and urgent interdisciplinary care provided by specialty and subspecialty teams over long periods of time.
Families of children with complex chronic conditions often encounter social and financial challenges, including the high cost of treatments and care, stigma, and other obstacles (e.g., parent quitting job to care for child, moving to be close to hospital) related to accommodating the child’s needs.
The challenges that this group of children and their families face are complex and vary depending on factors such as geographic location, culture, society, health system and related policies. These challenges are also experienced differently and influenced by individual caregiver skills and attributes, how care is provided, and importantly, how different societies and cultures value and support children with complex chronic conditions and their families. While the specific circumstances surrounding these challenges may differ, the distinct needs and vulnerabilities of this population are similar, and certain ethical obligations towards them exist. However, as the pandemic has shown, children with complex and chronic conditions are likely to be neglected or ignored in public policy decisions due to the complexities of their needs.
This call for papers aims to collect and explore diverse perspectives and experiences on the common practical and ethical challenges faced by children with complex chronic conditions and their families, with particular attention to the global health perspective.
The call invites authors from different countries, with a particular emphasis on those from the Global South, to submit papers that explore these challenges and potential responses to them.
The full call for papers is available on the Monash Bioethics Review website. The deadline for submissions is 30 September 2024.
Guest co-editors: Sapfo Lignou, Rebecca Seltzer, Mark Sheehan, Jeff Jones