In 2022, the University of Pisa, led by Professor Martina Smorti, launched a research study on the psychological and relational well-being of young people with cardiomyopathy. From the results of this study, an intervention project funded by AICARM was launched at the Cardiomyopathy Unit of the AOU Careggi-Firenze, whose first results seem to confirm how group meetings can constitute a support network to deal with the transition to adulthood.
di Martina Smorti, Associate in Developmental and Educational Psychology, University of Pisa and Alessia Carducci, psychologist, of AICARM
The diagnosis of a chronic disease such as cardiomyopathy implies a significant change in the patient's life management and, consequently, a new adaptation to the reality that comes in his or her way. Especially if the diagnosis of cardiomyopathy occurs in adolescence, it can make it more difficult to adapt to the "new life" and the challenges that accompany late adolescence or early adulthood (ages 16-30). The period between late adolescence and early adulthood is configured as an evolutionary crisis characterized by numerous changes: the process of emancipation from the family of origin begins and, in parallel, the importance of the peer group increases, personal identity gradually takes shape and the idea of what one wants to be takes shape, important choices are made from an educational and work point of view and new responsibilities are taken on, love life takes on increasing importance and the desire to build a new family may arise.
These new challenges can be even more difficult for young people with a chronic disease such as cardiomyopathy: this can lead to feelings of vulnerability, increased risk of anxious-depressive symptoms, social isolation, risky behaviors and difficulties in therapeutic adherence.
Scientific literature has often focused on the difficulties of pediatric or adult heart patients, but little attention has been paid to the needs of young adult patients.
Starting from these premises, in 2022, the University of Pisa under the responsibility of Professor Martina Smorti started a research study on the psychological and relational well-being of young people with cardiomyopathy. In addition to increasing scientific knowledge on the topic, the aim of this study was to understand the real psychological needs of patients and then provide the possibility of building targeted interventions. Through the involvement of 65 young people with cardiomyopathy, some central and recurring themes were highlighted: the feeling of loneliness of their experiences of illness; the difficulty of talking about the illness with peers (not ill) and therefore the desire to compare with other young people with the same pathology; doubts and fears about the choices of their life path after the diagnosis; fears and difficulties in dealing with future parenthood; relational complexities with their parents after the diagnosis; the experience and management of the defibrillator, both proposed and implanted. The prevalent needs reported were those related to the need for comparison with a psychologist, the desire to compare with other patients.
Starting from the results of this study started in 2024, in collaboration with Dr. Guendalina Rossi (psychiatrist) and Dr. Alessia Carducci (psychologist), both from AICARM, the intervention project aimed at supporting the psychological well-being of young people with cardiomyopathy was launched. The scientific direction and planning were coordinated by the University of Pisa, while the management and cost were entirely financed by AICARM. At the Cardiomyopathy Unit of the AOU Careggi-Florence, approximately seventy young people with cardiomyopathy were contacted and offered the opportunity to benefit from free psychological counseling and participate in patient support groups (led by Dr. Carducci).
25 young people between the ages of 20 and 30 responded positively to the proposal. Based on the needs that emerged in the psychological interview, the patients were divided into three support groups with different purposes. The first group was aimed at helping patients adapt (or redefine) their life paths in the educational or work environment in accordance with the needs of the disease; the second group was aimed at encouraging a redefinition of parent-child relationships that would favor their transition to adulthood; the third group was focused on acceptance and management of the defibrillator (ICD) in daily life. The support groups between patients included 4 meetings lasting 1 hours each on a monthly basis, led by a psychologist, and implemented online to encourage maximum participation of patients located in different geographical areas.
The support groups were launched in May and were very well received by patients, who appreciated the opportunity to share their experience with other young people with the same pathology. What they liked was the opportunity to share not so much (or not only) the history of the disease but also (and above all) the personal, human history of each person. This allowed participants to empathize with each other, to see themselves reflected in the stories of others, reducing the perception of isolation with the desire to stay in touch even outside the group. The first results seem to confirm how group meetings can constitute a support network to face the transition to adulthood. AICARM's support for this project and the fact that participation is completely free constitutes an added value because it allows all interested parties to participate in an inclusive manner.
Prof. Martina Smorti
Martina Smorti, psychologist, psychotherapist and associate professor of Developmental Psychology at the University of Pisa, has been conducting research on the role that certain pathologies or clinical conditions have on the psychosocial well-being of individuals in different developmental stages. With regard to patients with cardiac pathologies, her studies have focused on the psychosocial well-being of adolescents and young adults with cardiomyopathy, and on the psychological well-being of elderly patients with amyloidosis and their caregivers. She is currently involved in the European project VITAL (VIrtual Twins as tools for personalised Clinical care) which aims to create a virtual human twin for the optimisation of pharmacological and interventional therapy for some cardiovascular disorders. In this project she is responsible for the assessment of psychological factors related to patients' acceptance of the virtual human twin.
Dr. Alessia Carducci
Alessia Carducci, psychologist, perinatal psychologist, has been working in the field of psychological research since 2018 (first as a collaborator, then as a scholarship holder and expert in the subject at the University of Pisa). In her freelance activity, she follows adolescents, young people and adults in psychological support paths. Furthermore, she is currently involved in the AICARM project "Adolescents with Cardiomyopathy and psychological well-being" with the aim of supporting young patients through individual interviews and group activities.