Monash Bioethics Review - Call for Papers: Special Issue on Ethical, Practical and Systemic Challenges Facing Children with Complex Chronic Conditions: A Global Health Perspective

Guest co-editors: Sapfo Lignou, Rebecca Seltzer, Mark Sheehan, Jeff Jones

Rationale and Description

Children with complex chronic conditions (CCCC) are a group of children who experience fragility, functional limitations, high healthcare service needs, and high healthcare utilisation (Cohen et al., 2011). This includes children with medical complexity, behavioural complexity, and developmental disorders. 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. The quality of their care often depends on established therapeutic relationships and the coordination of multiple health and social services, such as inpatient and outpatient healthcare, social work, home-based care, and special educational interventions. Due to poor integration and communication among different providers, health outcomes for this group are often variable and poor.

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. Care needs for these children often demand that one parent serve as a full-time caregiver, with little or no financial support. In addition, families of children with complex chronic conditions may have more than one child who suffers from a serious health condition requiring care and support. 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.

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. Changes made to the provision of, and access to, usual care and support pathways during the COVID-19 pandemic disproportionately affected children with complex chronic conditions and raised important ethical questions related to equity and health justice. Pre-existing and current systemic inefficiencies are likely to further exacerbate the health and social inequalities these children face, leading to disadvantages with clinical and non-clinical consequences that extend into adulthood. Despite their importance, these issues have not been properly considered in policy and ethics debates so far.

Call for Papers

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. We invite researchers 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. Recognising the diversity of perspectives and experiences in a range of cultural, structural, and practical contexts, we will interpret what counts as a complex chronic condition broadly. Our aim is to encourage a better understanding of the intersection of social and public health, the universal and specific challenges related to the care of this population, and how different ethical, political, and cultural values may affect responses to these challenges. We will focus on the values that have informed and should shape decisions regarding the care of CCCC and examine approaches that promote a more holistic and inclusive understanding of how the multifaceted challenges presented in their care should be addressed.

The special issue will include country-specific case studies, allowing to compare and contrast the different manifestations of these problems as they occur in each country or context. Examples of complex conditions that can be discussed include, but are not limited to, autism spectrum disorders, children with genetic syndromes, sequalae of extreme prematurity, congenital anomalies, neuromuscular disorders, children with behavioural and mental health challenges,

Topics of interest include, but are not limited to:

• Should we think of children with complex chronic conditions as ethically distinctive?
• Ethical and practical issues arising out of parents and carers’ experiences in caring for a child with a complex chronic condition.
• Ethical and practical challenges that individualistic or communal family unit models face regarding the care of a child with complex chronic conditions. 
• Ethical and practical issues that child health professionals face in delivering care for children with complex conditions.
• Ethical, social obligations towards children with complex conditions and their families  Inequity and inequality of opportunity in access to care and care exceptionalism
• How should we eliminate systemic weaknesses in meeting the needs of children with complex conditions? 
• How should we inform more efficient and fair decisions about the care of children with complex conditions in the future?
• What are the ethical issues associated with using family engagement as a tool to inform more equitable and efficient care for children with complex conditions?
• We encourage submissions from researchers from a range of disciplines, including bioethics, pediatrics, sociology, anthropology, psychology, and health services research. Papers should be original research or reviews.

The special issue will provide a platform for sharing knowledge and ideas, and for promoting the development of effective policies and practices to improve the care and support provided to children with complex conditions and their families. We hope that this special issue will contribute to the broader conversation on global health and the care of this vulnerable population.

The deadline for manuscript submissions is September 30th, 2024. Blinded manuscripts of up to 10,000 words (or as few as 2,000 words) should be submitted via the Monash Bioethics Review editorial manager system here: https://www.editorialmanager.com/mobr/default2.aspx

All manuscripts should be indicated as submissions to the special issue on ‘Ethical, Practical and Systemic Challenges Facing Children with Complex Chronic Conditions: A Global Health Perspective’

For any queries surrounding the relevance of a prospective article to the special issue, please contact the guest editors at sapfo.lignou@ethox.ox.ac.uk

Citations:

Cohen, E., Kuo, D. Z., Agrawal, R., Berry, J. G., Bhagat, S. K., Simon, T. D., & Srivastava, R. (2011). Children with medical complexity: An emerging population for clinical and research initiatives. Pediatrics, 127(3), 529-538.