Caring for the emotional health of families in the face of illness
Communicating a chronic illness diagnosis to a family is an emotionally complex process that, if not handled correctly, directly impacts the emotional well-being of the recipient. A child's chronic illness diagnosis is a difficult emotional blow that affects the entire family unit. The patient and their family leave the doctor's office with prescriptions and medical guidelines about the illness, but they also leave carrying a heavy burden of emotions that will shape the family dynamic from that moment on, without any emotional guidance on how to manage them.
Within families, there's a lot of talk about the illness, the medications, and the logistics of caring for the person, but what about the emotions that arise around the illness? Do families sit down and talk amongst themselves about what they're feeling? The reality we observe is that few families engage in dialogue about feelings and emotions within their immediate family. Many patient associations create groups for parents, siblings, affected individuals, or multi-family groups focused on the illness. These groups are a great help to families and serve as a place to share experiences about the illness, but at Sentim, we saw the need to go a step further: to create multi-family groups where the diagnosis isn't relevant, allowing us to focus solely on the feelings and emotions that arise around it.
Expressing what we feel is difficult for most people, especially if we do it in a group, since we hide behind talking about the disease and everything it entails so as not to have to delve into the pain, sadness, anger, fear or guilt that it generates and that we feel as mothers or fathers, siblings, grandparents or affected people.
At Sentim we believe that emotions don't understand diagnoses.
At Sentim, we lead multi-family groups made up of families with various pathologies of greater or lesser complexity with the shared understanding that the disease is chronic and that all families have difficulties managing the emotions generated around the disease.
Multifamily groups have existed for many years in different hospital services, but Sentim is a pioneering multifamily group due to the particularity of the heterogeneity of the diseases of the group attendees.
Depression in children and adolescents with chronic illnesses
The Sentim program has been running for six years at Sant Joan de Déu Hospital in Barcelona with very satisfactory results for the participating families—around 200 families to date—and the referring professionals (from neurology, cardiology, endocrinology, and other departments). The groups are open to all and were held weekly in person until the start of the COVID-19 pandemic, when they transitioned to online sessions. Currently, the Sentim model and approach are being expanded to other hospitals, whether or not they belong to the Hospitaller Order of Saint John of God.
In conclusion, we believe that participating in Sentim groups helps children and young people with illnesses to reflect, to see their own emotions reflected in others, helping them to manage those emotions and feel better emotionally. For siblings, it helps them better understand the emotions that arise between them and between the sick child and their parents. Finally, for adults (parents, grandparents), participating in the groups provides emotional support because they feel accompanied and engaged, sharing their emotions with other families and enabling them to share those emotions with their own children.
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