Recipes for the psychological well-being of young patients

Interview with Prof. Martina Smorti, Professor of Developmental Psychology

di Francesca Conti

Prof. Martina Smorti, Professor of Developmental Psychology at the University of Pisa, conducted, in collaboration with the Cardiomyopathy Unit of Careggi and with the support of AICARM, a survey on the psychological impact of the disease on young patients. Support groups were created for late adolescents and young adults in which it was evident that sharing the disease with other children is useful for promoting communication about cardiomyopathy even in broader social relationships.

Let's start by introducing the topic of the psychological approach with heart patients. Can you tell us about your experience? What is the importance of addressing the disease also from the point of view of the psychological impact?
I am a Professor of Developmental Psychology at the University of Pisa but for years I have collaborated with the Cardiomyopathy Unit of the Careggi Hospital and with the Regional Center for the diagnosis and treatment of amyloidosis. In both cases, the aim of the studies is to evaluate the impact of the intervention on psychological well-being. This is important for two reasons: on the one hand, the studies tell us that psychological well-being is linked to a better adaptation to the disease and has a positive effect on the state of health, on the other hand, it concretely helps to improve therapeutic adherence. The studies conducted so far show that, among cardiac patients, those who enjoy greater psychological well-being, take their medications regularly and monitor their symptoms more carefully. This means that psychological health also has an impact on physical health.

In addition to the individual dimension, the psychological well-being of the patient also depends on the social acceptance of the disease. Can you clarify this aspect?
What we should aim for is integration, adaptation and acceptance of the disease not only at an individual level but also at a social level, because if the patient understands, recognizes and accepts the disease at a personal level, but does not integrate it into his social identities (i.e. those he plays within the group of friends, the sports group, in his relationship with his partner), the tendency will always be to hide the disease. We have studied this aspect in young people with cardiomyopathy, finding that, if the disease is accepted at a personal level, it is not always accepted and integrated at a social level. To integrate the disease at a social level, it is important to communicate the diagnosis of the disease to friends and partners... but this is not always easy. There is the fear of arousing compassion in others, of being perceived as different, of being isolated. The point is that when the young person does not share the disease with other people who are significant to him, two things usually happen: either he isolates himself and stops hanging out with his group of friends or, if he continues hanging out with his peer group, he may behave as if he were healthy, with the risk of exposing himself to health risks. The young person will tend to carry out the same activities in a group that others do, going for a run, playing sports, travelling or adopting other normal practices that are dangerous for the young person with cardiomyopathy. To encourage acceptance of the disease also at a social level, a first step can be to share one's condition with other patients. Working with groups of patients is one of the strategies often used in foreign contexts. For example, in Great Britain the association of family members Cardiomyopathy UK organizes patient groups aimed at populations of different ages. There are patient groups for children, adolescents, young adults, adults and the elderly as well as groups for caregivers and family members of patients (for example groups for parents of young patients). These groups, which, through the sharing of experiences, promote better adaptation and acceptance of the disease. Through the exchange of experiences and the sharing of experiences, in fact, one can receive input and learn different strategies for dealing with the disease or different ways of looking at it.

What we tried to do with AICARM was exactly this, to create support groups for late adolescent and young adult patients because this is a critical phase of life from both an evolutionary and clinical point of view. From an evolutionary point of view, in this phase of life, young people face important choices from an educational and work point of view, they gradually achieve economic independence, they go to live on their own, sanctioning the definitive separation from their family of origin, they establish relationships as a couple that often lead them to build a new family. From a clinical point of view, this is an important phase of life because the transition from pediatric to adult care occurs. Therefore, intervening in this phase can promote better adaptation to the normal challenges of life, such as finding a job that is suitable for one's functional capacity and making life choices or activities that integrate with one's identity, which is also constituted by the disease. The experience of patient groups for late adolescents and young adults has shown that sharing the disease with other young people is useful to promote communication about cardiomyopathy also in broader social relationships. The group promotes greater acceptance of the disease not only on a personal level but also on a social level.

How important is it to also intervene on the patient's family members, partners and, more generally, on the people around the patient?

It is very important as demonstrated by the data from the study we conducted with the University of Pisa in collaboration with the Cardiomyopathy Unit of Careggi, and by international research data. This is also confirmed by the needs expressed by patients through support groups. The patients themselves reported, on the one hand, this strong concern of the parents for their clinical condition, on the other hand in some cases non-acceptance: a real refusal of the diagnosis by the parents that forced the patients to behave normally, going beyond the clinical condition. Parents' groups are important to encourage acceptance of the disease and to express concerns and doubts that they probably do not feel they can express with their child so as not to burden him with further anxiety and worries. A comparison with other parents of patients can make them feel less alone because they find themselves sharing the concerns and can discover from other parents different strategies and ways to deal with the relationship with their children.

How is your work progressing and what are the next steps?
The first phase of the project on the psychological well-being of young people with cardiomyopathy carried out with AICARM is nearing completion. However, starting from the needs expressed by patients, often found also in literature, we believe that the next step should be to also take charge of the family members and create support groups for the parents of late-adolescent and young adult patients who, as already underlined, face a particular phase of life, together with them the whole family. Precisely for this reason I would keep the focus on the parents of patients in this phase of life, because they too must ferry and promote the autonomy of their child, the separation also in housing, support autonomous choices without excessive concern that places limits on life choices.

And what about pregnancy?
In my opinion, another very important aspect could be to think about support in the context of pregnancy planning. I have been dealing with women's perinatal well-being for a long time and I have conducted studies on risky pregnancies, I am well aware of the heavy experience that women with risky pregnancies face. Yet one of the limitations of research is that everyone focuses on women since they are the ones who have to carry the pregnancy to term and have both a physical and psychological burden of worries, but men are often neglected. In this type of disease, which is hereditary, there is a risk of transmission and therefore men also have an equally important psychological burden: they wonder what kind of legacy they will be able to leave to their children, how they will be able to relate to their child, what the relationship will be like if their child were to also be affected by the same disease, if they will be able to see them grow up. It would therefore be useful to provide support when planning the pregnancy, when deciding on the therapeutic choices from a pharmacological but also psychological point of view.

Finally, there is the delicate question of sporting activity.
Another point raised by young patients is the interruption of sports activity, when they go from being competitive athletes to not being so anymore, this is a very delicate passage that should be supported, precisely because sports activity is not only sport but also a context of socialization with the peer group. When competitive activity is interrupted, a support group that was important is also completely lost.