1. THE LUCA DE NIGRIS AWAKENING HOME IN BOLOGNA (ITALY) Alberto Battistini #, Loris Betti #, Fulvio De Nigris *, Maria Teresa Montella #, Emanuela Dall’Olmi §, Maria Vaccari *, Roberto Piperno # # AUSL di Bologna § Comune di Bologna * Associazione Amici di Luca

2. The project was launched in 1998 as an agreement between a non- profit association “Gli Amici di Luca” and the Local Health Authority (AUSL of Bologna).

3. This first “Casa dei Risvegli”, dedicated to Luca De Nigris, is a rehabilitation centre for patients in a vegetative or post- vegetative state who still have potential for improvement. It is a fundamental stage within the Bologna’s integrated pathway for severe brain injuries (BI). It is the last segment of a hospital based care process preparing for home discharge. Acute rehabilitation recovery phase survival Long term care Home care Long term care Home care Awakening unit Casa dei Risvegli

4. Patients admitted 1.Vegetative state (Multi-Society Task Force on PVS. N Engl J Med 1994) 2.Minimally Conscious State (Neurology 2002; 58:349–353) 3.Slow to recover patients 4.Severe disability requiring a transitional living setting Access criteria Only from acute ward. Within 9 months from TBI, and no more than 3 months after hypoxic or vascular BI. Patients aged 14-65 years, clinically stable, with no comorbility requiring continuous medical surveillance, spontaneous breathing, good haemodynamics, absence of sepsis. Patients must have completed the diagnostic, neurosurgical, orthopaedic and/or surgical procedures.

5. Different postacute care models are available for these patients: 1.Hospital ward model. Priority of cure processes and centrality of the healthcare organisation. 2.Social model. Priority of long term care and nursing. 3.Educational model. Patients are considered people involved in a more or less formalised “learning process”.

6. Users are not considered as “patients” but rather people with high care and rehabilitation needs. It is founded on the centrality of family members. Medical staff and caregivers operate in a complementary way on the basis of an explicit “care contract”. The professionals assure the best technical procedures and a role of “expert” with information and educational purposes. This model prepares for the functions of caregiver after the discharge. Family members are therefore not merely part of the team but rather they are first organisers of the everyday life. Casa dei Risvegli Luca De Nigris: A new home model

7. Layout  Temporary residence with independent accommodation units: 10 individual mini- lodgings with day and night quarters.  Large lounges, socialisation spaces, diagnostic and therapy labs.

8. The Casa dei Risvegli Luca De Nigris is designed as a care setting that:  Provides high rehabilitation intensity,  Facilitate social support and mutual help for the family members  Prepares the family for discharge and for the role of caregivers. This takes places through counselling, psychological assistance, structured learning and information available in the form of handbooks and videos (on the in-house circuit). Clinical project medium density of medical actions primarily aimed at prevention and managing of late complications. Rehabilitation project intensive, multi-disciplinary and multi-dimensional, integrated with music- and art- therapy. Family project adjustment, “crisis” management, education, care “tool box” delivering and training. Social project Group meetings, social events, community network

9. Rehabilitation Professionals The patient’s family Nursing care by staff specialised in rehabilitation nursing. Social services Physiotherapy Neuropsychology and cognitive remediation Psychology Occupational Therapy Music- and art-therapy Pedagogist for the recovery of personal identity and history and the reconstruction of a life project. Also coordinates the volunteers. Rehabilitation project  protect the muscolo-skeletal periphery and the physiological afferences,  facilitate the recovery of awareness and consciousness,  facilitate the recovery of motor, cognitive and behavioural resources.

10. Habits, people and objects make it possible to maintain the “ritual” that produces emotion and confirms the identity, especially in a phase of awakening “in an alien land” Therefore, the followings must be assured: Active role of families, crucial in terms of both interpersonal factors and the maintenance of the pace and ritual of everyday life, Possibility of continuous cohabitation with good comfort in adequate accommodations, Availability of events and places that act as synchronisers to family life Respect of the privacy of the family and the patient. Personalisation of the context with objects and arrangements of the space, which are the biographical reference that make it possible to reconnect the threads of a broken history.

11. Staying is different from a passive time, waiting for therapy. The goals of inter-personal relationships, identity and behaviour combine with the goals of prevention, mobility, continence, cognition and basic autonomy. Everyday life is modelled on the principle of a “therapeutic milieau” defined by integrated activity plans, according to the principles of sensory regulation. Programmes must be flexible and must organise the day, thus overcoming the dichotomy between “therapy” and “waiting” time, towards a “rehabilitation time”.

12. The model empowers the family The families are empowered as “experts” of the person, active members of the team with equal importance, and first responsible of the social ecology in the Centre. Active living inside the centre enables the family to maintain the relationships, the pace, the habits and the rituals of daily life. The time of staying allows an educational process of the family aimed at home discharging without fear and feelings of exceeding burden of care. The presence of organised volunteers, the integration with the social and health services and the wide involvement of the local community of Bologna, makes it possible to reduce the feelings of loneliness after discharging and to find social and institutional attention to the family needs, as well as to promote good practice and good local politics.