Academic journal article Health Sociology Review

From the 'Expert Patient' to 'Expert Family': A Feasibility Study on Family Learning for People with Long-Term Conditions in Italy

Academic journal article Health Sociology Review

From the 'Expert Patient' to 'Expert Family': A Feasibility Study on Family Learning for People with Long-Term Conditions in Italy

Article excerpt

Introduction: Changes in family structure and welfare policies in Italy

The demographic, economic and social changes that have been taking place in Italy over the last few decades have had a dramatic impact upon both family structure and the socio-demographic features of its components. The fall in fertility rates, longer average life expectancies, and the fall in death rates are among the factors that have most contributed to the progressive ageing of the population (Frova et al 1999). The ageing index has doubled over the last 50 years and population forecasts indicate that this will grow exponentially over the next 50 years, raising the ageing index to almost 35%. According to demographic forecasts no other country in the European Union is likely to reach this level (Tognetti Bordogna 2007).

Families have been increasingly characterised as One-person' families (i.e. formed by one, often old, individual living alone), 'single-parent families' (i.e. formed by one widowed or separated/divorced parent and one or more children), or 'extended families' (where three or more generations live together). The continued presence of grown up children (up to 30 years old) in their parents' houses, the cohabitation with their own old parents, define a family where people who are 50-70 years old give 'social and health protection' both to their children and to their parents. The latter tend to express increasingly severe and complex care needs owing to wider diffusion and close association of chronic diseases together with a 'lengthy term' of limited autonomy or disability due to the increased average lifespan (Pavolini 2004). Italian families still have separation and divorce rates lower than those of many European countries, and Italian women have lower employment rates (Vicarelli 2007; Zajcyk 2007). However, there is little doubt that Italian families are showing increasing difficulty to bear the care needs of their members, in particular those of the elderly and of the non self-sufficient (Pinnelli et al 2007).

The ageing process and its foreseeable consequences are at the core of the cultural debate (Ogg 2005; Stranges 2007) and of the political agenda (European Commission 2002, 2005: WHO 2002; Tognetti Bordogna 2007). Given the irreversibility of this process, it seems necessary to launch an integrated system of actions (health, social, cultural etc.). considering old age not an emergency issue, but a collective opportunity for growth and prosperity (Censis 2005; Ranci 2001: Scortegagna 2005).

This logic is at odds, in Italy, with a weak welfare system both in terms of health and personal services. The Italian welfare system has been identified as a 'familistic' one, at least substantially if not formally (Ascoli and Ranci 2002; Ferrera 2006; Ranci 2004; Saraceno 2002). In fact, social protection policies have developed very slowly and in a residual way, with the implicit aim to recognise (and therefore to leave) families with the responsibility of meeting care needs for every single citizen. The creation of the National Health Service in 1978 and the reform of social services in 2000 was supposed to implement a universalistic and institutional welfare that, in reality, has been hard to carry out Pavolini 2003; Vicarelli 2005).

The 1978 reform (Uw 833/1978). which created the National Health System (NHS). introduced universal coverage to Italian citizens and established human dignity, health needs and solidarity as the guiding principles (Vicarelli 1997a. 1997b). In 1992-1993, the government approved the first reform of the NHS (Legislative Decrees 502/1992 and 517/1993). This started a process of distributing health care powers to the regions and a parallel delegation of managerial autonomy to hospitals and local health units. The latter was envisaged within a broader model of internal market reform.

The Legislative Decree (229/1999) launched a new reform package (third reform), It deepened the regional devolution process, envisaged reorienting the internal market reforms towards strengthening cooperation and regulation, established the initial tools for defining the core benefit package and further regulated the introduction of clinical guidelines to guarantee quality in health care. …

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