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Paper

Pluridisabled child and his/her family in care. Autobiographical accounts of families about quality of social and health services and participated construction of an early care model

• issue: Issue 2 / 2008
• authors: Roberta Caldin, Paola Milani, Simone Visentin
• keywords: Italy, integrated services

• views: 3615
• downloaded: 1
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abstract

Background. The project belongs to the research area aimed at understanding, through parents'point of view, how health, rehabilitation and social services work with pluridisabled children and their families.

Purpose. In the "Report on childhood and adolescence condition, Veneto 2006" we found a punctual description of a multidimensional phenomenon: the living condition of children with severe and profound disabilities. At present, we note a high fragmentation of care network, and the need to project and organize individual care process, originated through the involvement of different actors: services, clients, carers, community appears to be urgent.

The project aims at getting to know and understanding families'perceptions and feelings about their caring process, in order to plan an early care model with them. The specific objectives are:

• to know the care experiences of children and their families;
• to find how professionals work with families;
• to outline a new care model based also on families'suggestions.

Methodology and instruments. The research is divided into 2 parts:

• the first one: during a qualitative part data were collected from semi-structured interviews with families and from focus group with social workers to reflect upon families' experiences and needs, and upon social services organization in order to detect strong and weak points;
• the second one: during a quantitative examination we used the following evaluation instruments (elaborated by Fondazione Zancan, 2005): the subjects and resources map, the index of care coverage (ICA) and the level of protection in life space (LDP).

The sample is composed of 30 families with 3-12 years old pluridisabled children identified by:

• Department of Pediatrics, University of Padua;
• School Inclusion Service, Social and Health Care Service, Padua;
• "La Nostra Famiglia" and the IRCCS "E. Medea", Conegliano (TV).

 Outcomes. The average age of parents was 41.98 years old; mothers were 40.28 (30-47) years old, while fathers were 43.66 (32-51) years old. The average age of children was 6.57 (3-12) years old. In addition to their disabled child, 57% families had another child. Regarding parents' educational qualification:

• middle school: 40%
• secondary school: 38%
• graduate: 22%

Parents'jobs:

Findings. Keeping the topics used in the interview in mind, the principal tendencies are:

- birth: when there is a traumatic childbirth and the child health is critical, mothers seem to refuse their child and fathers play a mediation role between mothers and their child, thus showing a higher lucidity, even on the organizational plan;

- hospitalization: interviews show that, with the years passing by, some pediatric hospitals have improved their relation with families, thus influencing family atmosphere;

- health services: the care process is operative when hospitals attend families and create nets with health services. Consequently parents feel better and early care is more guaranteed;

- proximity net: grandmothers play a supportive role to mothers; associations are places where parents can socialize and compare notes;

- care model: the demand of a domicile operator stands out. This operator has to attend a specialized training and can join motherr or replace then in the child's education.

 Implications. The report shows the necessity to calibrate again the social health services, in order to: increase the informative function and pedagogical consulting to the families during all the child growth; promote services network.

From a political point of view, we must operate at a legislative level, aiming at helping parents reconcile their working time with time for care.

 Key references

Bronfenbrenner, U. (1986). Ecologia dello sviluppo umano. Bologna: Il Mulino.

Caldin, R. (Ed.). (2006). Percorsi educativi nella disabilità visiva. Identità, famiglia e integrazione scolastica e sociale. Trento: Erickson.

Milani, P. (Ed.) (2001). Manuale di educazione familiare. Ricerca, intervento, formazione. Trento: Erickson.

Contacts: Simone Visentin, Dipartimento di Scienze dell'Educazione, Università di Padova, Piazza Capitaniato, E-mail: simone.visentin@unipd.it, Phone 3336640528