Specialised Social Services for Rare Diseases
Specialised Social Services
Specialised Social Services are instrumental to the empowerment of people living with rare diseases and are essential to the improvement of their well-being and health. This section provides the list of services in Europe, as well as facts, case studies and guidelines for these services. Testimonies of both patients and volunteers can also be found below.
Specialised Social Services for Rare Diseases
List of services
Learn more about the Respite Care Services indicated on the map: their activities, who can attend each service, how to contact the services, and where they are located.
Fact Sheet and Case Studies
Consult our Fact Sheet and Case Studies to learn more about Respite Care Services and established services across Europe.
Testimonials
People living with a rare disease share their experiences attending Respite Care Services.
What are Respite Care Programmes?
Respite care is
provided, on a short term basis, for people living with rare diseases,
so that their carers can have a short relief from care giving. Many of
the people living with rare diseases involved might otherwise require
permanent placement in a facility outside their home.
Respite Care Services (RCS) can be offered in various ways:
- Residential respite: the person living with the rare disease goes away to an adapted centre to be looked after by someone else, a “respite care family”, for a while;
- Domiciliary care: some services offer a caregiver who comes to the family home, and take over care giving duties for a while so that the regular carer can have a break from the daily routine of care giving;
- Day care respite: day care centres, nursing homes, institutions or respite care group homes with assisted living facilities (no overnight facilities);
-
Emergency respite: services that give access to respite on a short notice in the event of an unexpected emergency.
Why are they needed?
Respite care enables the caregivers to maintain
the ability to continue care giving. The benefits to carers described in
the literature also fall into these two broad categories: stress
reduction and self-esteem increase; and improved family functioning
(Merriman and Canavan, 2007).
A second purpose of respite is to make it possible
for people affected by a with rare condition to live according to their
usual daily routine and to provide a place to experience and perform
recreational and meaningful activities away from their parents/other
caregivers. Benefits to service users mentioned in the literature are
socialisation, and enjoyment of experiences outside the home
(Merriman and Canavan, 2007).
Without respite, not only can families suffer
economically and emotionally, caregivers themselves may face serious
health and social risks as a result of stress and exhaustion associated
with continuous care giving. Three fifths of family caregivers aged
19-64 surveyed recently by the Commonwealth Fund, a private foundation
working with health care and related policies, reported fair or poor
health, one or more chronic conditions, or a disability, compared with
only one-third of non-caregivers.
The long term implications of providing respite
care involve benefits for carers and people living with rare diseases.
The families will become better carers because of the relief respite
provides and due to the exchange of experience with respite care
providers while people living with rare diseases will increase their
life quality. Respite often prepares people affected by a rare disease
to live more independently in the present but also as grown-ups. In this
way, the quality of the overall care provided will improve.
Page created: 05/03/2013Page last updated: 03/04/2013
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