###### 1 Introduction  
According to UNICEF [1], children with special health needs (SHNs) are those with health problems whose condition may include: (a) those who were born with a pathology that affects their development; (b) those who have suffered a lifelong injury, infection or nutritional deficiency that contributes to long-term dysfunction; (c) those who have been exposed to environmental toxins that result in developmental delays; and (d) those who have developed anxiety or depression as a result of limiting events. The increasing prevalence of these situations has led to a rise in dependency cases within this population, often requiring the dedicated support of informal caregivers [2]. In Portugal, the Statute of the Informal Caregiver (Law no. 100/2019, 6 September) defines an informal caregiver as \"the spouse, de facto partner or relative up to the fourth degree of the person being cared for, who permanently accompanies and cares for him/her,lives in a shared residence, and does not receive any payment for professional activity or the care provided to the person\" [3]. The demanding nature of caregiving often leads to significant personal sacrifice. Informal caregivers frequently experience feelings of isolation and neglect their own well-being and basic needs, which can result in considerable mental and physical health problems [4; 5]. For these caregivers, enhanced knowledge and health literacy are crucial. Better-informed caregivers are more capable of making conscious and well-considered decisions, ultimately improving the quality of life for the individuals they care for [6]. Indeed, health literacy is a topic of growing importance in public health and healthcare, recognizing its role in empowering individuals to manage their health effectively [7; 8]. In 2012, the European Health Literacy Consortium introduced a comprehensive definition of health literacy that states: \"Health literacy is linked to literacy and entails people's knowledge, motivation and competences to access, understand, appraise, and apply health information in order to make judgments and take decisions in everyday life concerning healthcare, disease prevention and health promotion to maintain or improve quality of life during the life course\" [8]. Individuals with low health literacy often experience more hospitalizations, increased emergency care usage, underutilization of preventive services, difficulty interpreting health information, poorer health, higher mortality, and increased healthcare expenditures [9; 10]. Informal caregivers of children with SHN face multiple challenges that require special knowledge to fulfill their role effectively. Providing them with social recognition and appreciation is important to ensure they receive the necessary support for more effective and sustainable care. It is essential to invest in their training and provide professional, legal, and financial assistance [2]. Despite efforts to integrate informal caregivers into support systems and improve the care they provide, significant gaps remain. A study on informal caregivers revealed that 65% cited restrictions on their personal and social lives as a major challenge, followed by health limitations (42%), lack of time (39%), and insufficient personal or technical support (38%). Additionally, 33% reported financial difficulties, and 30% experienced challenges in their relationship with the dependent person. Over 40% identified in-home support, technical aids, and free time as their most pressing needs [11]. These unmet needs underscore the necessity of developing targeted plans and strategies to address them [12; 13]. In the literature, most studies focus on caregivers of the adult population, and there is a distinct lack of specific activity programs designed for informal caregivers of children with SHNs. To bridge this gap and align with Portuguese informal caregiver guidelines, a survey was conducted to identify the perceived needs and difficulties within this specific population.