This is an international project that examines two cases: one in Italy, a 45-year-old woman affected by epilepsy, and another in Spain, an 8-year-old child with Lennox-Gastaut Syndrome, using narratives from the entire care ecosystem (family members and healthcare professionals) in order to understand the perspectives of all those involved in the patient’s care journey.
A recent study, called Siblings Voices Survey (Dixon-Salazar et al.), has examined the emotional impact of growing up with a sibling who has severe epilepsy. In the survey, 47%-62% of siblings reported feeling unhappy sometimes or often, with «more symptoms of depression than their parents perceived.» More than one-third of adult siblings (35%) stated that they had been treated for clinical depression. Additionally, 79% of younger siblings expressed fear that their sibling with severe epilepsy might die.
Naturally, the impact of epilepsy on the quality of life of those who suffer from it, as well as their caregivers, varies significantly depending on the country in which they live and the type of condition they are dealing with. This influences the considerable family restructuring that is often necessary. According to Francesca Sofia, president of the European Regional Executive Committee of the International Bureau for Epilepsy (IBE): “There are parents who are forced to leave their jobs. There is enormous social damage in terms of lost productivity. In addition to the personal harm, because these people suddenly see their lives completely change, along with any type of ambition or aspiration.”
The quality of life for people with epilepsy is often affected by phenomena of discrimination and stigmatization. Sofia explains: “These are people who could lead a completely normal life, but they are often discriminated against in the workplace and do not have access to certain job opportunities. They face difficulties or major problems in obtaining a driver’s license, for example, due to a legislative framework that does not facilitate the social integration of people with controlled epilepsy. Just having a diagnosis and being carriers of the disease excludes a series of opportunities.”
The 75th World Health Assembly has ratified the Global Intersectoral Action Plan for Epilepsy and Other Neurological Disorders, which brings the focus of Member States to the prevention, early diagnosis, and proper treatment of the various forms of epilepsy, as well as addressing the psycho-physical, social, economic, and educational needs of people with epilepsy and their families (https://epi-care.eu/about-epicare/).
Member States are expected to achieve, by 2031, five global goals: updating existing national policies on neurological disorders and launching at least one awareness campaign or advocacy program; including neurological disorders in universal healthcare systems, with the provision of essential medicines and basic technologies for their management; implementing at least one intersectoral program aimed at promoting brain health and preventing neurological disorders; conducting periodic assessments—every 3 years—of progress towards global goals; increasing coverage of services for people with epilepsy by 50% from current levels, and developing appropriate legislation to promote and protect the human rights of people with epilepsy (source: Rare Disease Observatory).
The GENERA project and GENERA Focus Sibling are aligned with the WHO’s 2031 goal of promoting brain health and preventing neurological disorders, as they use narrative medicine to enhance understanding and support for individuals affected by epilepsy and their entire family context.
By collecting and analyzing the experiences of patients and their families, the project promotes a patient-centered approach, facilitates the integration of specific needs into caregiver support, and encourages more targeted and personalized policies.
Its focus on siblings of patients ensures a complete view of the family context, enhancing overall support and well-being, along with the value of primary prevention for siblings. In fact, greater knowledge of a sibling’s DEE (Developmental and Epileptic Encephalopathies) has resulted in a lesser psychosocial impact for unaffected siblings. Between 52%-76% of younger and adult siblings who felt informed about DEE and/or helped during a crisis had lower scores for depression and anxiety symptoms; 38%-86% of younger and adult siblings who felt informed about their sibling’s DEE reported feeling more comfortable talking to others about their sibling’s diagnosis (Psychosocial impact on siblings of patients with developmental and epileptic encephalopathies).
GENERA integrates Narrative Medicine with learning by living, using everyday experiences as a source of learning strategies and skills, Health Humanities, using humanities disciplines to bring life stories to light, and design thinking to reframe narratives and transform them into competencies and strengths as value-generators.
GENERA proposes a system that:
- Promotes the development of Collaborative Engagement, working at all levels of the ecosystem: family, healthcare providers, and educators.
- Provides tools to the family network to give new meaning to the experience of illness and hospitalization.
- Recognizes the specific skills developed by siblings in their role, transferring these skills to other areas of life.
GENERA has received the sponsorship of SIMeN, the Italian Society of Narrative Medicine, which attests to its social, cultural, and scientific validity.
Furthermore, due to its unique characteristics, GENERA is a system that can be tailored to the needs of each setting in which it is implemented, whether that be within the family, the educational context, or healthcare staff training, while always maintaining the ethical and social values that consider disability and living with it not as a deficit compared to the norm, but as a natural and dynamic diversity among people, allowing each individual to shine with their own uniqueness.
Below is a link to the publications of GENERA and GENERA-focus Sibling in Italian.
https://linktr.ee/progetto_genera
Additional Information:
https://doosesyndrome.org/wp-content/uploads/2021/07/Zogenix_SiblingStudy_Fact_Sheet_vParents.pdf
https://www.sibs.org.uk/info-and-advice/learn-about-conditions/lennox-gastaut-syndrome-lgs