From the hospital towards social reintegration: the support path for people with severe acquired brain injury and their families

ABSTRACT

Severe acquired brain injury (sABI) includes a variety of acute brain injuries, both with or without traumatic etiology, characterized by a state of coma of variable duration and by the presence of motor, sensory, cognitive and/or behavioral impairments. It refers to a set of conditions of different origins resulting in outcomes that are often disabling. In facing a new health condition that brings about profound changes, the person and their family suffer enormous stress not only from the drama of the illness and the uncertainty of the future, but also from financial and organizational difficulties. In the present essay, the focus is on issues related to people with sABI and their families. In particular, we address the methodology and the development phases of an action research carried out in the Marche Region of Italy. In this research, social workers supported sABI people and their families for six months from the date of discharge from hospital, in order to identify responses suitable for the complexity of their needs. We will also present the outcomes of the interventions, identifying a support path, which stimulates social workers to reconsider some of the ways in which they work.

ASTRATTO

La Grave Cerebrolesione Acquisita (GCA) comprende una varietà di lesioni cerebrali acute, a eziologia traumatica e non, caratterizzate da uno stato di coma più o meno prolungato e dalla presenza di menomazioni motorie, sensoriali, cognitive e/o comportamentali; esse rappresentano un insieme di condizioni di origine diversa che provoca esiti spesso invalidanti. La persona e la sua famiglia devono affrontare una nuova condizione di salute che comporta profondi cambiamenti, dovuti non solo al dramma della malattia e all’incertezza per il futuro, ma anche alle difficoltà finanziarie e organizzative. Nel presente contributo l’attenzione è posta sulle problematiche relative alle persone con GCA e alle loro famiglie; nello specifico verranno illustrate la metodologia e le fasi di sviluppo di una ricerca azione realizzata in Italia, nella Regione Marche. In tale ricerca gli assistenti sociali hanno affiancato, per i primi sei mesi dopo la dimissione ospedaliera, le persone con GCA e le loro famiglie, al fine di individuare le risposte adeguate alla complessità dei loro bisogni. Si presenteranno, inoltre, gli aspetti peculiari del percorso di accompagnamento e gli esiti degli interventi attuati; aspetti che permettono di ripensare alcune modalità operative dell’assistente sociale.

KEYWORDS:

• Severe acquired brain injury
• social worker
• support path
• continuity of care
• social and health integration

PAROLE CHIAVE:

• Grave Cerebrolesione Acquisita
• assistente sociale
• percorso di accompagnamento
• continuità assistenziale
• integrazione socio-sanitaria

Acknowledgements

I would like to take this opportunity to thank the reviewers for their precious suggestions. Regarding the research I especially thank: the staff of the ‘Santo Stefano’ Rehabilitation Institute, the Brain Injury Association Marche ‘Andrea’ and all the families who believed and participated in the project.

Disclosure statement

No potential conflict of interest was reported by the author.

Notes on contributor

Carla Moretti is Professor of Social Work and Researcher of Economic Sociology at the Department of Economics and Social Sciences. She is President of the degree course in Organization and Management of Social Services, Faculty of Economics, Polytechnic University of Marche, Italy. Her main research themes are methodology of social interventions, social planning, social and health integration, community work and local development.

Notes

1. This Conference model was developed in the US by the National Institute of Health in the seventies as a method to resolve controversies in the use of healthcare interventions and to orientate research. The aim of this conference is to define the point reached in respect to the specific assistance needs, through an explicit process in which scientific information is evaluated and discussed both by healthcare professionals and other professionals involved in the problem (social workers, users, administrators, economists and volunteers). To date three National Consensus Conferences have been held, as well as one Consensus Conference for the associations representing the families.

2. The Marche Region, situated in central Italy, is home to the ‘Santo Stefano’ Rehabilitation Institute in Porto Potenza Picena, which represents the principal node in the post-acute care phase of sABI patients. This structure, specialized in cognitive and motor rehabilitation, takes care of the majority of subjects with sABI residing in the Marche Region.

3. The Centre for Research and Service on Social and Health Integration of the Polytechnic University of Marche aims to promote, test and spread the development of social and health innovation.

4. The Rehabilitation Institute ‘Santo Stefano’ operating for over forty years in the field of rehabilitation, offers people with disabilities and their families complete answers, through taking charge, in the different phases of the clinical pathway of care, in hospital, on the territory and at home.

5. The Brain Injury Association Marche ‘Andrea’, born in 1999, was founded by relatives of head injuries, from operators of The Rehabilitation Institute ‘Santo Stefano’ and some former hospitalized in the same Institute that are back to the active life, with the aim to support the families of people with head injuries.

6. The Laboratory, started up by an artisan in Fabriano (in the Province of Ancona), provides people in difficulty with the opportunity to express themselves through a vocation.