by Michael Tomasoa
In 2024, the Roman Catholic Archdiocese of Jakarta unveiled its children’s day theme of “health, friendship, and becoming a blessing.” In other words, healthy kids who have access to healthcare, are free from stunting, and who are able to socialize and befriend other kids will become blessings for us all. Not all kids, however, are free to enjoy these rights. Critically ill kids, or kids who suffer from medical conditions that have a high likelihood of causing their deaths within a certain period, are one such group. Outside of the poor physical health that their conditions leave them in, critically ill kids also suffer setbacks to their mental health and development. They may lack the energy to play due to their exhausting treatment plans, or they may also fall behind in education and socialization due to bullying from their peers due to their condition. Their parents, meanwhile, must make great sacrifices to care for their sick kids. One study found that parents caring for terminally ill kids reported high fatigue, leading to more frequent illnesses, depression, and feelings of isolation. Every year, Indonesia reports 45,000 new cases of kids with terminal illnesses. This is a heavy burden not only for sick kids, but also for their families, communities, and wider support networks.
In the Center for Indonesia’s Strategic Development Initiatives’s 2024 healthcare white paper, they argue that “it is ironic that the very people who are the primary beneficiaries of a robust health sector are often excluded from the policy design and formulation process. They are frequently treated as objects within the health system, rather than as active participants.” This is especially true for critically ill kids. Health policies must not only focus on managing their physical conditions, they must also be individualized for each kid to manage their mental wellbeing as well as that of their families and communities caring for them. One way in which the healthcare system can help parents and their kids cope with such hardship is through promoting “normalization.” This entails helping them establish a set routine and regularity in their daily lives outside of their scheduled treatments. For instance, healthcare providers could make efforts to place sick kids in situations more typical of their healthier peers, such as classroom settings in the hospital, or arranging for playtimes with kids their age. For parents, healthcare providers could organize support meetings with other families going through similar hardships. For both parents and their kids, this would minimize the stigma of their disease; and increase their independence and self-esteem while also decreasing feelings of guilt, helplessness, and anxiety. Ultimately, this would lessen the burden on healthcare systems as kids will be more receptive of treatments and parents would not suffer from poor health caused by their stress.
On an infrastructural level, ensuring that kids receive holistic standards of healthcare could include the construction of facilities such as age-appropriate playrooms. The Claire’s Place foundation, for instance, works to construct playrooms in hospitals that provide “a wide range of activities, games, and play therapy,” specially tailored to meet the unique needs of critically ill kids. This acknowledges that while all kids need to play, there are specific barriers that need to be overcome by those with chronic conditions. There are also other stand out examples that demonstrate how entire communities can uplift and rally around sick kids. The University of Iowa Hawkeyes football team, in particular, has a tradition known as “The Hawkeye Wave.” At the end of every first quarter, every player and fan in the stadium waves towards the pediatric patients and their families at the University of Iowa’s Stead Family Children’s Hospital right next door to their home stadium. This helps sick kids and their families feel acknowledged and recognized, and helps give them the strength that they need to fight their illnesses knowing that they do not stand alone.
The challenges faced by critically ill kids and their families highlight the urgent need for a more inclusive and compassionate healthcare system. As emphasized in the Archidiocese of Jakarta’s theme of “health, friendship, and becoming a blessing,” it is important to address not only the physical health of these children but also their emotional and social well-being. By adopting a holistic approach that promotes normalization and community support, we can empower both critically ill kids and their families, helping them navigate the immense burdens they bear. The well-being of critically ill kids is a collective responsibility, and by working together, we can ensure that they not only receive the care that they need, but that they also experience the joy and connections that every kid deserves. In doing so, we reinforce the idea that every kid has the potential to thrive, regardless of their health challenges.
