Transcript Deutscher Kinderhospizverein e.V.

Children Hospice in Germany
The supply of life-shortening diseased children,
youth and young grown-ups
Children's hospitals and pediatricians
SAPV-Teams (specialized ambulant palliative care)
Inpatient hospices for children
Outpatient children's Hospice Services
The last point on this list is the main focus of my speech ...
www.deutscher-kinderhospizverein.de
Figures, Data, Facts
Situation in Germany in 2014:
• 118 Outpatient children's Hospice Services
• 13 Inpatient hospices for children
• 2 Inpatient hospices for young grown-ups
The organization „Deutsche Kinderhospizverein“ includes in 2014:
• 2864 Members
• 20 Outpatient children's Hospice Services
09/14:
• Families, we care for: 369
• Voluntary employees: 748
www.deutscher-kinderhospizverein.de
Characteristic features of children hospice work
• Many different diseases; less children getting infected with cancer.
• A lot of children, who are seriously – physically and mentally –
handicapped and disabled.
• Caring for a long time; often for years; with many fellows in the
care system.
• Children depend on their parents. The whole social environment
has an important effect; children hospice work refers to the whole
family.
• A large draw area implies long journeys to the families.
www.deutscher-kinderhospizverein.de
Life shortening diseases in childhood
Metabolic diseases, e.g. mucopolysaccaridosis
Genetic diseases
Muscular disorders, e.g. Duchenne muscular dystrophy
Severe brain damage, caused by a lack of oxygen at birth or caused by
accident
Cancer
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The situation of the family
The course of disease of the child often spans years.
Meanwhile, the children of other families grow up - the own gradually
lose their abilities and are approaching the final stage of life.
This has a deep impact on the partnership.
Siblings are heavily burdened.
The care of the sick child and the constant presence of illness, dying,
death and grief lead to a massive mental and physical overload.
Social isolation
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Prevelance of childhood diseases in Germany
22.600 children and adolescents with life shortening diseases
(approximately).
Approximately 28 children and young per 100.000 people.
Annually there 1.500 children and youth dying in Germany due to
their disease, about 520 thereof due to cancer.
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Financing of children hospice work
Sourcing by health insurance on basis of statutory provisions:
• § 39a SGB V for the outpatient children's Hospice Services
• § 132d SGB V for SAPV-Teams (specialized ambulant palliative
care)
• Donations
• Voluntary work
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What does outpatient children hospice work? (1)
Support of families with children, youth an young grown-ups suffering
from a live shortening disease by offering:
• Psycho-social support
• Information
• Counseling
Support of the whole familiy means or includes:
• from the day of the diagnosis of a life-limiting illness
• in life and death
• and after the children, youth or young grown-ups have passed
away
www.deutscher-kinderhospizverein.de
What does outpatient children hospice work? (2)
• Support and promotion of self-help
• Intermediation of other facilities
• Individual grief counseling
• Guidance for kindergarten and schools
Our aim is:
To balance the family system as well as the quality of life within the
family. In other words strengthens resources in the family and
improve quality of life.
www.deutscher-kinderhospizverein.de
The mode of practice in outpatient children's
hospice services
The company of families focuses on the abilities, needs, and interests
of affected children, their siblings and parents.
The action is carried out in close consultation with the parents, who
are respected as experts in the interests of their children.
The coordination of outpatient children and youth hospice service is
taken over by a full-time professional.
The accompaniment of families is carried out by trained volunteer
staff.
The offer is free of charge to the families.
www.deutscher-kinderhospizverein.de
Precise help by volunteer staff ...
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being open to the concerns of the family
listening
provide with information
providing further assistance if required
child care sisters and brothers of the diseased child
driving service if necessary
recreational activities
... or simply be there
... and stay there - although it will be very difficult one day.
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Further possible offers of outpatient children and
youth hospice services
According to needs and capacities:
• family café
• holiday offers for children and youth
• possibilities for parents meeting each other
• groups, in which fathers can get together
• similar groups for mothers as well
• siblings are brought in contact groups
• groups for familiy members, which are in mourning after the child
has passed away
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Tasks of the full-time professional coordination
Contact the affected families in the region.
Acquisition and training of volunteers.
Support the volunteers in their work.
Coordination and documentation of the accompaniment in the
families.
Public relations and networking; e.g. institutions of the health-social
system, schools and kindergarten, paediatrics, childrens‘s clinic,
children nursing service.
www.deutscher-kinderhospizverein.de
Limits of outpatient children's hospice services
Outpatient children and youth hospice services
• offer no paediatric nursing
• replace not neighborly help in communities
• replace not medical, psychological, therapeutic professionals or
church chaplain
• accompany exclusively children and young people with life-limiting
illness
www.deutscher-kinderhospizverein.de
Children Hospice in Germany
Thank you for your interest and your attention
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Überschrift
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