Mental health policy and practice across Europe: an overview

Carers and families 381
conducted in Germany found that relatives with HEE had significantly more
objective and subjective burden, as well as lower satisfaction with life (Moller-
Leimkuhler 2005). Scazufca and Kuipers (1996) found that relatives of people
with schizophrenia were less burdened at a nine-month follow up than at the
time of the initial episode. The largest improvement in burden was found
among relatives who changed from HEE to LEE, while a significant increment in
burden was observed among those who shifted from LEE to HEE.
Some studies suggest that relatives’ coping strategies are influenced by the
symptoms and level of disability seen in people with mental health disorders.
Coercion is more frequently adopted by relatives of people with formal thought
disorders and delusions (Magliano et al. 1995; Harvey et al. 2001a), or if they have
high levels of social disability and experience frequent relapses. Acceptance of
an individual’s behaviours is higher among relatives of those with greater social
functioning (Birchwood and Cochrane 1990). Emotion-focused coping strategies,
such as avoidance, resignation and seeking spiritual help, as well as a low
sense of mastery or control over the situation, have been found to be closely
related to high family burden (Magliano et al. 1995; Bibou-Nakou et al. 1997).
Also, it has been found that carers of chronic patients more frequently adopt a
passive style of coping than those caring for individuals in the early phase,
suggesting a change in coping style over time.
Burden has also been studied in relation to caregivers’ social networks
(Magliano et al. 1998; Ostman and Hansson 2001). High practical social support,
as well as participation in self-help groups and psycho-educational programmes
have been associated with effective coping strategies and lower family
distress (Johnson 1990, 1995). Social networks of families and friends, for
instance, are particularly vital for older carers; without access to such social
support networks they have been found to be much more vulnerable to having a
crisis in caring (Wenger and Burholt 2004). More generally, when family members
have a supportive social network, they have greater protection against
stress (Gore and Colten 1991; Olstad et al. 2001) and are better able to manage
their relative’s critical periods, with a consequent decrease in rates of hospitalization
(Brugha et al. 1993).
A national study on family burden in routine clinical settings was carried out
in Italy, where mental health care is strongly community-oriented. More than
700 families of service users with schizophrenia were consecutively recruited
in 30 mental health departments randomly selected from across the country
(Magliano et al. 2002). Ninety-seven per cent of relatives reported feelings
of loss, and 83 per cent stated that they cried or felt depressed. In addition,
73 per cent of relatives had neglected their hobbies and 68 per cent had had
difficulties going on holiday. Thirty-four per cent of the relatives reported that
they felt confident enough to seek professional help in a crisis situation, and
43 per cent received adequate information from service staff on how to cope
with an individual’s disturbing behaviours. The practical and psychological
burden was significantly higher in families of those with high disability and
manic/hostility symptoms when relatives received poor support from professionals
and from their social networks in emergencies, and when there was less
practical social support. Moreover, practical burden was found to be lower in
more affluent northern Italy, where professional resources were more frequently