AICARM's project to support parents with distress

The diagnosis of cardiomyopathy at a young age represents a significant moment not only for the person who receives it but for the entire family. who are faced with an often very heavy emotional, organizational, and relational burden. For parents, their child's diagnosis can trigger intense emotions, characterized by stress, anxiety, and, in some cases, full-blown post-traumatic stress disorder. Concerns about their child's health, the uncertainty of the future, and the possible impact of the disease on daily life or its progression can trigger constant doubts and fears. At the same time, because cardiomyopathy is a rare disease, the difficulty in sharing one's experiences with those who have not had similar experiences can fuel a sense of isolation in parents, worsening the perceived emotional burden.
In addition to having to manage their own feelings, parents find themselves in the position of supporting their child Helping them not only accept the diagnosis and therapeutic and behavioral recommendations, but also explore their identity by supporting the gradual construction of their autonomy. Indeed, the transition from adolescence to adulthood is characterized by the progressive achievement of independence from the family of origin, leading to adulthood. This process should be supported by parents, who, however, if burdened by excessive concerns for their child (for example, in the case of a diagnosis), may adopt a more protective attitude, which, in addition to limiting the achievement of autonomy, can also lead to tensions and conflicts in the relationship.

The emotional burden of parents, however, is often not recognized by the medical and health context This, however, focuses attention on the young patient, increasing the family members' feelings of loneliness and isolation. Recognizing parents' distress can be helpful in supporting their well-being, supporting their role as caregivers, and improving the relationship with their child.
In addition to the scientific literature, the importance of supporting parents has also emerged in an intervention project supported by AICARM in 2024 aimed at young people with cardiomyopathyIn fact, support groups for young men and women aged 16 to 30 revealed an overprotective attitude among parents which, while understandable given the diagnosis, was passed on to their children with an additional burden of anxiety and fear, failing to foster confidence in young people's abilities and, in fact, limiting them in their life choices.
The indication that seemed to emerge was to support parents in containing their worries. for the disease by promoting children's autonomy by trusting their decision-making abilities. Continuing the 2024 project, the intervention-research project was launched at the beginning of 2025, thanks to the contribution of AICARM and under the scientific direction of Professor Martina Smorti of the University of Pisa. “Parents, Adolescents, and Cardiomyopathy”Led by Dr. Alessia Carducci, the project aimed to better understand parents' needs and support their emotional well-being through specific support groups.

In the first phase, a study was conducted to evaluate parents' psychological and relational well-being. The AICARM newsletter The study was publicized and parents were given the opportunity to participate by completing an online questionnaire designed to explore their psychological well-being and the presence of any distress; their main concerns related to their child's illness; and the quality of their relationship and the level of support they received from healthcare professionals. Another section explored their relationship with their child and the main changes noted in the relationship following the diagnosis. Finally, parents were asked whether they felt the need for an individual consultation with a psychologist and whether they were interested in participating in online support sessions for parents.
The research involved approximately 50 parents of boys and girls with cardiomyopathy aged between 16 and 30 years old.The responses to the questionnaire revealed a varied picture: the main fears that emerged were related to the worsening of their child's illness and a sense of helplessness, with the fear of not being able to protect them (for example, fear that their child might have a cardiac arrest and no one could help them because they were alone). Other concerns concerned their children's future if they wanted to be parents (fear of transmitting the disease, fear of not being able to achieve or carry a pregnancy to term).

These concerns, while in some cases they can be expressed to doctors, by whom parents report feeling welcomed and listened to, in other cases they struggle to emerge in a healthcare context.. In fact, some parents have reported not feeling completely free to express doubts or ask questions about aspects that are important to them, thus experiencing a sense of loneliness and distance in communicating with the doctor and the feeling of not being seen as individuals. Regarding their relationship with their child, following the diagnosis, some parents reported increased anxiety and worry, which translated into a desire to protect their children while overly controlling their activities.
The intervention was developed based on the research dataFirst, parents who had agreed to participate in group activities or who needed a psychological consultation were contacted. Three parent support groups (each with approximately eight participants) were subsequently created to provide a space for listening, discussion, and support, moderated by a psychologist. The support groups began in June 2025 and were held through monthly online meetings.
Through sharing experiences, mutual support, and the proposed activities, these meetings helped parents better face the challenges associated with the disease, strengthening the emotional and relational resources to support their children not only in managing the disease but also and above all in achieving their identity and autonomy.
The project concluded in October 2025 with the fourth and final meeting of each groupDuring this final day, time was dedicated to sharing expectations about the journey we've undertaken together. Furthermore, there was a chance for discussion where participants could express their thoughts, reflect on the changes they've experienced, and share any needs that may have emerged. This information will be crucial for developing further interventions and services aimed at supporting families and young people with cardiomyopathy.