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Zentrum für Psychosoziale MedizinInstitut für Medizin-Soziologie
"European Expert Meeting on Self-Help Support"
“The way from passive health consumers to active players" –
How self-help and patient initiatives are entering the health care system
Christopher Kofahl, Alf Trojan
University Medical Center Hamburg-Eppendorf
Center of Psychosocial Medicine
Department of Medical Sociology
Martinistr. 52
20246 Hamburg
Zentrum für Psychosoziale MedizinInstitut für Medizin-Soziologie
2Alf Trojan, 2008
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Overview
Citizen’s movements and grassroots movements in the health care sector
Action research and model-projects
Political awareness and recognition of self-help groups (SHG) and self-help organisations (SHO)
Future challenges and needs Societal trends Trends in health care
Zentrum für Psychosoziale MedizinInstitut für Medizin-Soziologie
Where we are today:
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Self-help Groups Self-help Organisations (SHO) Self-help Clearinghouses
approx. 70,000 – 100,000Self-help groups
Approx. 280 Self-help
Clearinghouses
approx. 355 on national level,number on federal state level unknown
locallevel
federalstateslevel
national level
16 offices for addiction affairs
15 self-help unions / Wor-king groups for self-help /support for the disabled
16 Working groups of self-help clearing-
houses (LAG KISS)
4 State-level
co-ordination centres
Representatives ofnational unions for
addiction aid
37 SHO in the “forum for people
with chronic diseases and disabilities”
104 HCPO for peoplewith chronic diseases and
disabilities
-----------------------------
Federal Association
SELF-HELP (BAG SELBSTHILFE)
National centre for addiction
aid (DHS)
The PARITÄTISCHEGesamtverband
(welfare organisation)
“Representatives of the leading self-help umbrella organisations” on the basis of § 20c Social Security Code V
National ClearingHouse for the
Encouragement and Support of Self-Help
Groups (NAKOS)
National Working Group on self-help groups
(DAG SHG)
Imp
act
on
fed
era
l an
d n
ati
on
al le
vel act
ivit
ies
esp
eci
ally
in
th
e c
ase
of
rare
dis
ease
s
Possible development towards an SHO in the case of manifest problems and continuous self-help work
Geene, Huber, Hundertmark-Mayser, Möller-Bock, Thiel, 2009, p. 14
Zentrum für Psychosoziale MedizinInstitut für Medizin-Soziologie
How it began:
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Zentrum für Psychosoziale MedizinInstitut für Medizin-Soziologie
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Citizen’s movements and grassroots movements in the health care sector
1970’ies and 1980’ies: based on the 1968 civil commotions and students riots, Medical Crisis – Crisis in Medicine; Maltreatment and grave errors in treatment; medicalisation of the psycho-social; “arrogance and ignorance of health care professionals”; …
“Medical Nemesis” – Ivan Illich 1975;
“silent revolution” (Moeller 1978)
Consumer oriented health care provision (Badura 1979)
Self-help as concept of womens’ movement (Kickbusch 1981)
Anti-professionalism and countervailing power (Illich, Foucault, Kickbusch, Hackethal etc.)
Emancipation and empowerment (Trojan et al. 1981, 1986)
Zentrum für Psychosoziale MedizinInstitut für Medizin-Soziologie
“Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less, in human beings of whom they
know nothing”
Voltaire, 1694-1778
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Action Research – Research Action
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The beginning of self-help researchin Germany
First inspirations and sources, e.g.:
Caplan & Killilea 1976: Support Systems and Mutual Help. Multidisciplinary Explorations. New York
Katz & Bender 1976 (Hg): The Strength in Us: Self-Help Groups in the Modern World, New York
-> First essential definition of ‘self-help group‘ as voluntary, small groups to provide mutual aid for a specific purpose.
Zentrum für Psychosoziale MedizinInstitut für Medizin-Soziologie
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The beginning of self-help researchin Germany
In the late 70‘s and 80‘s several research and model projects, usually funded by federal and state ministries, e.g.: „Psychosocial-therapeutic self-help groups“; University of
Gießen 1977-1981, (Moeller, Daum, Matzat) „Health-related self-help groups“, University of Hamburg
1979-1983, (Trojan, Deneke, Itzwerth et al.) „Self-help in the Health Care System“, University of Bielefeld
1979-1983, (Grunow, Paulus, Engfer et al.) (Analysis of individual and family self-help activities)
Research Program
“Lay-potential, patient-
activation and health
related self-help” (co-
ordinated by Christian
von Ferber, funded by
the federal ministry for
research and technology )
Research Program
“Lay-potential, patient-
activation and health
related self-help” (co-
ordinated by Christian
von Ferber, funded by
the federal ministry for
research and technology )
New Public Health!
New Public Health!Active citizenship!
Active citizenship!
Social integration!
Social integration!
Empowerment!
Empowerment!
Consumer-/citizen-orientation!Consumer-/citizen-orientation!
Third sector!Third sector!
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The beginning of self-help researchin Germany
Due to the co-operation between researchers and self-help activists the image and public acceptability of self-help groups has been sustainably promoted and improved.
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Knowledge is powerBeing independentthrough self-help in groups
Knowledge is powerBeing independentthrough self-help in groups
Desire
Knowledge
Opposition
Desire
Knowledge
Opposition
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Self-help groups:Together we are stronger
Self-help groups:Together we are stronger
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The development and implementation of formal self-help support in (Western-)Germany
1979: “Initiative Group Self-Help Hamburg”
1980: Health Day in Berlin
1981: Health Day in Hamburg – title: “Self-help and self-organisation”
1981: first KISS (Kontact and Information Sentre for Self-help groups) started in Hamburg, funded by financial resources of a research project (model)
Zentrum für Psychosoziale MedizinInstitut für Medizin-Soziologie
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The development and implementation of formal self-help support in (Western-)Germany
1982: start-up of the National Working Group on self-help groups (DAG SHG e.V.)
1984: KISS Hamburg is funded by local authorities
1984: start-up of The National Clearing House for the Encouragement and Support of Self-Help Groups (NAKOS)
In these years many other self-help clearing-houses mushroomed in different federal states
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Development of self-help groups and number of participantsbetween 1985 and 1995
25.000
30.000
46.000
60.000
5.000 7.500
0
10000
20000
30000
40000
50000
60000
1985 1988 1992 1995
Self-help groups in Eastern Germany Self-help groups in Western Germany
Quelle: ISAB Köln-Leipzig 12/95. Modellprogramm Selbsthilfeförderung in den neuen Bundesländern
Number of participants: 1,1 Mio. 1,3 Mio. 1,9 Mio. 2,6 Mio.
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Today: 273 self-help clearinghouses are supporting appr. 40,000 self-help groups
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The development and implementation of formal self-help support in (Western-)Germany
End of 80ies and in the 90ies self-help research is mainly focusing on self-help support and co-operationNowadays the focus is often laid on “New forms of self-help”, e.g.: Virtual self-help, new media, Differentiating between different sub- and target-groups in
order to promote self-help activities (socially deprived, immigrants etc.)
Professionalization of self-help, political influence, Effectivity and efficiency, Influences on self-help groups and organizations by industrial
companies, health care insurers and political decision makers,
…
Zentrum für Psychosoziale MedizinInstitut für Medizin-Soziologie
Who is joining self-help groups?
Results from the
National Telephone Health-Survey 2003
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National Telephone Health-Survey of the Robert Koch Institute 2003
Self-help group participation because of …
Sub-Group … a relative ... own health… a relative and own health
… a relative or own health
Never
Male 2,7 4,5 0,4 7,6 92,3 100
Female 4,8 4,5 0,6 9,9 90,1 100
18–29 years 2,1 1,9 0 4 95,9 100
30–39 years 4,1 3,4 0,3 7,8 92,1 100
40–65 years 5 6,8 0,9 12,7 87,3 100
über 65 years 2,8 5 0,7 8,5 91,5 100
Western Germany 3,8 4,7 0,6 9,1 90,9 100
Eastern Germany 3,6 3,9 0,2 7,7 92,3 100
Under-class 2,5 4,3 0,4 7,2 92,8 100
Middle-class 3,6 4,8 0,5 8,9 91 100
Upper-class 4,6 4,2 0,6 9,4 90,5 100
German origin 3,8 4,6 0,5 8,9 91 100
Migrational background
3,7 3,3 0,5 7,5 92,5 100
Total in % 3,8 4,5 0,5 8,8 91,2 100
Total (N) 316 376 43 735 7.583 8.318
Zentrum für Psychosoziale MedizinInstitut für Medizin-Soziologie
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National Telephone Health-Survey of the Robert Koch Institute 2003
Self-help group participation because of …
Sub-Group … a relative ... own health… a relative and own health
… a relative or own health
Never
Male 2,7 4,5 0,4 7,6 92,3 100
Female 4,8 4,5 0,6 9,9 90,1 100
18–29 years 2,1 1,9 0 4 95,9 100
30–39 years 4,1 3,4 0,3 7,8 92,1 100
40–65 years 5 6,8 0,9 12,7 87,3 100
über 65 years 2,8 5 0,7 8,5 91,5 100
Western Germany 3,8 4,7 0,6 9,1 90,9 100
Eastern Germany 3,6 3,9 0,2 7,7 92,3 100
Under-class 2,5 4,3 0,4 7,2 92,8 100
Middle-class 3,6 4,8 0,5 8,9 91 100
Upper-class 4,6 4,2 0,6 9,4 90,5 100
German origin 3,8 4,6 0,5 8,9 91 100
Migrational background
3,7 3,3 0,5 7,5 92,5 100
Total in % 3,8 4,5 0,5 8,88,8 91,2 100
Total (N) 316 376 43 735 7.583 8.3188.318
Zentrum für Psychosoziale MedizinInstitut für Medizin-Soziologie
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National Telephone Health-Survey of the Robert Koch Institute 2003
Self-help group participation because of …
Sub-Group … a relative ... own health… a relative and own health
… a relative or own health
Never
Male 2,7 4,5 0,4 7,67,6 92,3 100
Female 4,8 4,5 0,6 9,99,9 90,1 100
18–29 years 2,1 1,9 0 4 95,9 100
30–39 years 4,1 3,4 0,3 7,8 92,1 100
40–65 years 5 6,8 0,9 12,7 87,3 100
über 65 years 2,8 5 0,7 8,5 91,5 100
Western Germany 3,8 4,7 0,6 9,1 90,9 100
Eastern Germany 3,6 3,9 0,2 7,7 92,3 100
Under-class 2,5 4,3 0,4 7,2 92,8 100
Middle-class 3,6 4,8 0,5 8,9 91 100
Upper-class 4,6 4,2 0,6 9,4 90,5 100
German origin 3,8 4,6 0,5 8,9 91 100
Migrational background
3,7 3,3 0,5 7,5 92,5 100
Total in % 3,8 4,5 0,5 8,8 91,2 100
Total (N) 316 376 43 735 7.583 8.318
Zentrum für Psychosoziale MedizinInstitut für Medizin-Soziologie
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National Telephone Health-Survey of the Robert Koch Institute 2003
Self-help group participation because of …
Sub-Group … a relative ... own health… a relative and own health
… a relative or own health
Never
Male 2,7 4,5 0,4 7,6 92,3 100
Female 4,8 4,5 0,6 9,9 90,1 100
18–29 years 2,1 1,9 0 4 95,9 100
30–39 years 4,1 3,4 0,3 7,8 92,1 100
40–65 years 5 6,8 0,9 12,7 87,3 100
über 65 years 2,8 5 0,7 8,5 91,5 100
Western Germany 3,8 4,7 0,6 9,1 90,9 100
Eastern Germany 3,6 3,9 0,2 7,7 92,3 100
Under-class 2,5 4,3 0,4 7,2 92,8 100
Middle-class 3,6 4,8 0,5 8,9 91 100
Upper-class 4,6 4,2 0,6 9,4 90,5 100
German origin 3,8 4,6 0,5 8,98,9 91 100
Migrational background
3,7 3,3 0,5 7,57,5 92,5 100
Total in % 3,8 4,5 0,5 8,8 91,2 100
Total (N) 316 376 43 735 7.583 8.318
Zentrum für Psychosoziale MedizinInstitut für Medizin-Soziologie
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I warmly welcome you to our self-help groupfor victims of self-help groups
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Results of the Hamburg Survey hours per member per month: 10 hrs. (n=271)
Total (Number of members * hrs/month): 50.864 hrs. (n=266)
Contribution to the creation of value (Wilkens 2002) = total hours * 0,755 productivity factor * 8 EUR Participating members in 266 groups: 307,218 €/month
Participating members in 1.500 groups (Hamburg): 1,732,243 €/month
Participating members in 70.000 groups (DE): 81 Mio €/month
Other estimations are ranging up to 2 billion € / year (nationwide) (Health report Germany 2006, p. 211)
Creation of value, calculated on the basis of a survey in Hamburg
Engagement of participating / active Members of self-help groups per month
Assumption: In all groups 10 hrs activities per member and month
Zentrum für Psychosoziale MedizinInstitut für Medizin-Soziologie
29Geene, Huber, Hundertmark-Mayser, Möller-Bock, Thiel, 2009, p. 18
Expenses for self-help promotion through federal ministries and states, the statutory health insurers and theGerman pension insurance in millions of Euros 1997 – 2007
Ministries of the federal states
For self-help in total
- Self-help groups
- self-help organisations
- self-help clearinghouses
For self-help in total
- Self-help clearinghouses
- self-help organisations, national level
Statutory Health Insurance
For self-help in total
German pension insurance
Further increasedue to § 20c
Social Security Code V
Further increasedue to § 20c
Social Security Code V
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Political awareness and recognition of self-help groups (SHG) and self-help organisations (SHO):
The new roles of „patients“ and „lay people“
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Strengthening old roles:
Patient = reporter of health outcomes, quality of life, patient satisfaction (treatment, health care services, health care system etc.)
Co-producer of social services for themselves, their family members and others (social capital) Health prevention Partner in therapy-planning (SDM) Adherence in treatment, care and rehabilitation Caring for dependent family members Voluntary social engagement …
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New roles of patients and lay people
Collaborator in health care and health promotion
Reviewer and controller (QM, quality circles etc.)
Participant, (co-)decision-maker cp. Conference of federal states’ health ministers 1999 in Trier cp. Council for the concerted action in the Health Care System
2000/2001, chapt. 2
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9,4 22,1 68,5
15,3 31,9 52,8
13,3 30 56,7
0% 20% 40% 60% 80% 100%
SHGs (N=149)
SH clearinghouses (N=72)
SHOs (N=90)
good or excellent moderate poor
Results from the SeKBD-Study Kurtz, Fricke, Schmidt, Seidel, Dierks, 2004
Assessment of potential political influence
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Basis: Social Security Code V (SGB V)
Since January 1st, 2004:§ 140f: participation of patient representatives in the federal joint committee (right to comment on plans and decisions and to give advice, no right to decide)§ 140h: national ombudsperson for patients to increase the patients’ perspectives and interests in political decisions
Zentrum für Psychosoziale MedizinInstitut für Medizin-Soziologie
Patients:
German Council for the Disabled: appr. 40 member-organisations, including the
Federal Association SELF-HELP with more than 100 member-organisations
Experts:
National Working Group on SHGs
National Working Group on Consumer Advising Centres
National Working Group on Patient Counselling Centres
Associations and Alliances, entitled to delegate members for the Federal Joint Committee:
Entitled Patient Representatives
Patienten-Kompetenzen stärken!
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Basis: Social Security Code V (SGB V)
Since January 1st, 2004:§ 140f: participation of patient representatives in the federal joint committee (right to comment on plans and decisions and to give advice, no right to decide)§ 140h: national ombudsperson for patients to increase the patients’ perspectives and interests in political decisions
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Federal Ministry for Self-help
Great, innit?
Have we
wrenched
from the state!
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Future Challenges and Needs
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Future challenges and needs
General societal trends
Trends in medical care and health care policies
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General societal trends
Demographic change:
Change in family systems
Transformation towards multi-cultural societies
Change in the spectrum of diseases and disabilities: dementia, chronic diseases, rare diseases, psychiatric disorders
Increasing gap between the rich and poor
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Demographic change: ageing societies
Increasing number of older people
Increasing life expectancy (the old old)
Increasing age ratio (population 65+ / population 15-64)
More people with resources for activities and social engagement (in the case of “active retirement”!)
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Increasing age ratio
source: eurostat (2002)
Population of the EU-15 by age-groups
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Change in family systems
Decreasing fertility rates
Increasing number of persons without children
Increasing number of divorces
Increasing number of one-person-households
decreasing family potentials (quantitatively)
Increasing womens‘ employment rates
Increasing burden of the middle generation, especially women with children
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Transformation towards multi-cultural societies
Increasing number of citizens with a migrational background (in Germany approx. 19%)
Increasing need of immigrants in the following decades (at least 200.000 immigrants p.a.)
increasing needs for integration measures and programs
increasing need for intercultural change
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German citizenswith migrational
background (incl.the German re-
settlers from Eas-tern Europe)
Citizens with non-German nationality
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Challenges for self-help support
Developing inter-cultural competency
Identification of target groups with high needs
Identification of approaches addressing immigrant groups
Identification of relevant co-operation partners and institutions
Integrating staff of different ethnic origin
Development of suitable transfer-activities for examples of good practice (congresses, work-shops, multiplier-trainings etc.)
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First Steps
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Change in the spectrum of diseases and disabilities
Chronic diseases (diabetes 2, CHD, asthma, back problems, …)
Rare diseases (rare diseases are not rare: in Germany approx. 4,000,000 people (5%) are having a rare disease)*,
Psychiatric disorders,
Dementia (today: ca. 1.2 Mio, 2030: ca. 1.8 Mio, 2050: ca.: 2.6 Mio)**
* ACHSE, www.achse-online.de
** Bickel, H.: Informationsblatt der Deutschen Alzheimer Gesellschaft
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Founding years of SHOs by type of SHO (N=134)
0%
20%
40%
60%
80%
100%
-1969 1970-1979 1980-1989 1990-1999 2000-2007
rare diseases chronic diseases
addiction and psychiatric disorders disabilitiesKofahl et al. 2009
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Change in the spectrum of diseases and disabilities
Increase of chronic diseases, rare diseases, psychic disorders, dementia
Increase of functional limitations, dependency and care needs
Increase of burden and deprivation of family carers
“Compression of Morbidity“
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The impact on families – a brief introduction into the EU-project “EUROFAMCARE”
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Pan-EuropeanNetwork
CoreGroup
AGE – European OlderPeople‘s Platform
Brussels
Universityof Hamburg
(Co-ordination Centre)
Italian National Research Centre on AgeingINRCA Ancona
National School for Public Health
SEXTANT Athens
Universityof Bremen
The Medical Academyof Bialystok
&University of Gdansk
Linköping University
Universityof Sheffield
Consortium
“Services for Supporting Family Carers of Elderly People in Europe: Characteristics, Coverage and Usage”
E U R O F A M C A R E
International Advisory
Board
National Advisory Groups
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Six-Countries-Study
Face to face interviews using a Joint Family Care Assessment with 1,000 carers per country providing 4 or more hours of personal care/support per week to an elderly relative (65+) in any need of support
Pan-EuropeanNetwork
CoreGroup
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Pan-EuropeanNetwork
CoreGroup
Sociodemographics (description of the samples)
Number of Carers 1014 990 995 921 1000 1003 5923
ELDERS, women (%) 64,5 71,2 69,5 57,7 72,8 68,5 67,5%
CARERS, women (%) 80,9 77,1 75,4 72,0 76,0 76,1 76,3%
ELDERS’ age (mean) 79,5 82,0 78,0 81,3 78,6 79,7 79,8 years
CARERS’ age (mean) 51,7 53,4 54,5 65,4 51,0 53,8 54,8 years
25 years
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Pan-EuropeanNetwork
CoreGroup
Relationship to ELDER (% within country)
spouse/partner 17,1 10,9 22,8 48,1 18,2 18,4 22,2
child 55,4 60,9 31,6 40,5 51,1 53,4 48,9
child-in-law 13,9 9,7 15,3 4,5 13,4 9,0 11,0
other 6,5 6,7 19,5 2,8 11,9 10,1 9,7
nephew/niece 4,2 8,3 4,6 1,3 3,0 2,8 4,1
sibling 1,8 2,4 3,6 1,8 0,9 3,0 2,3
uncle/aunt 1,0 0,6 1,5 0,9 0,6 2,7 1,2
cousin 0,1 0,5 1,1 0,1 0,9 0,7 0,6
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Pan-EuropeanNetwork
CoreGroup
Amount of and main reasons for caring
allHours per week care/support (mean)
51 50 51 38 45 39 45,6 h
physical illness/disabilities 30,6 18,6 29,4 38,8 43,6 24,8 30,9
mobility problems 24,4 29,5 20,4 9,7 10,4 27,9 20,5
age-related decline, old age
15,9 15,0 10,7 23,9 28,0 12,1 17,5
memory problems / cognitive impairment
5,6 9,0 11,1 19,0 4,9 14,9 10,6
non self-caring 5,5 9,9 11,1 0,7 3,5 10,0 6,9
sensory problems 3,2 4,3 4,9 3,9 2,6 3,8 3,8social reasons, loneliness, need for company
5,7 2,3 5,4 0,4 4,3 2,2 3,5
safety/feeling of insecurity 6,4 7,8 2,3 0,5 0,3 1,7 3,2psychological / psychiatric illness / problems
1,9 1,7 2,5 2,2 1,0 1,5 1,8
other reason 0,7 1,8 2,2 0,9 1,3 1,1 1,3
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Pan-EuropeanNetwork
CoreGroup
allHours per week care/support (mean)
51 50 51 38 45 39 45,6 h
physical illness/disabilities 30,6 18,6 29,4 38,8 43,6 24,8 30,9
mobility problems 24,4 29,5 20,4 9,7 10,4 27,9 20,5
age-related decline, old age
15,9 15,0 10,7 23,9 28,0 12,1 17,5
memory problems / cognitive impairment
5,6 9,0 11,1 19,0 4,9 14,9 10,6
non self-caring 5,5 9,9 11,1 0,7 3,5 10,0 6,9
sensory problems 3,2 4,3 4,9 3,9 2,6 3,8 3,8social reasons, loneliness, need for company
5,7 2,3 5,4 0,4 4,3 2,2 3,5
safety/feeling of insecurity 6,4 7,8 2,3 0,5 0,3 1,7 3,2psychological / psychiatric illness / problems
1,9 1,7 2,5 2,2 1,0 1,5 1,8
other reason 0,7 1,8 2,2 0,9 1,3 1,1 1,3
Amount of and main reasons for caring
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Pan-EuropeanNetwork
CoreGroup
allHours per week care/support (mean)
51 50 51 38 45 39 45,6 h
physical illness/disabilities 30,6 18,6 29,4 38,8 43,6 24,8 30,9
mobility problems 24,4 29,5 20,4 9,7 10,4 27,9 20,5
age-related decline, old age
15,9 15,0 10,7 23,9 28,0 12,1 17,5
memory problems / cognitive impairment
5,6 9,0 11,1 19,0 4,9 14,9 10,6
non self-caring 5,5 9,9 11,1 0,7 3,5 10,0 6,9
sensory problems 3,2 4,3 4,9 3,9 2,6 3,8 3,8social reasons, loneliness, need for company
5,7 2,3 5,4 0,4 4,3 2,2 3,5
safety/feeling of insecurity 6,4 7,8 2,3 0,5 0,3 1,7 3,2psychological / psychiatric illness / problems
1,9 1,7 2,5 2,2 1,0 1,5 1,8
other reason 0,7 1,8 2,2 0,9 1,3 1,1 1,3
Amount of and main reasons for caring
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Pan-EuropeanNetwork
CoreGroup
allHours per week care/support (mean)
51 50 51 38 45 39 45,6 h
physical illness/disabilities 30,6 18,6 29,4 38,8 43,6 24,8 30,9
mobility problems 24,4 29,5 20,4 9,7 10,4 27,9 20,5
age-related decline, old age
15,9 15,0 10,7 23,9 28,0 12,1 17,5
memory problems / cognitive impairment
5,6 9,0 11,1 19,0 4,9 14,9 10,6
non self-caring 5,5 9,9 11,1 0,7 3,5 10,0 6,9
sensory problems 3,2 4,3 4,9 3,9 2,6 3,8 3,8social reasons, loneliness, need for company
5,7 2,3 5,4 0,4 4,3 2,2 3,5
safety/feeling of insecurity 6,4 7,8 2,3 0,5 0,3 1,7 3,2psychological / psychiatric illness / problems
1,9 1,7 2,5 2,2 1,0 1,5 1,8
other reason 0,7 1,8 2,2 0,9 1,3 1,1 1,3
Amount of and main reasons for caring
But: 46% of the FCs are reporting memory problems of the elders!49% of them diagnosed dementia,17% different diagnosis,34% had no diagnosis.
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Pan-EuropeanNetwork
CoreGroup
allHours per week care/support (mean)
51 50 51 38 45 39 45,6 h
physical illness/disabilities 30,6 18,6 29,4 38,8 43,6 24,8 30,9
mobility problems 24,4 29,5 20,4 9,7 10,4 27,9 20,5
age-related decline, old age
15,9 15,0 10,7 23,9 28,0 12,1 17,5
memory problems / cognitive impairment
5,6 9,0 11,1 19,0 4,9 14,9 10,6
non self-caring 5,5 9,9 11,1 0,7 3,5 10,0 6,9
sensory problems 3,2 4,3 4,9 3,9 2,6 3,8 3,8social reasons, loneliness, need for company
5,7 2,3 5,4 0,4 4,3 2,2 3,5
safety/feeling of insecurity 6,4 7,8 2,3 0,5 0,3 1,7 3,2psychological / psychiatric illness / problems
1,9 1,7 2,5 2,2 1,0 1,5 1,8
other reason 0,7 1,8 2,2 0,9 1,3 1,1 1,3
Amount of and main reasons for caring
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Family Care = Burden?
Pan-EuropeanNetwork
CoreGroup
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Pan-EuropeanNetwork
CoreGroup
Perceived Burden
ADL
Memory Problems
Behavioural Problems
Social Support
Coping
Health & Well-Being
Stress-Coping Model of Care-giving* linear regression, standardised beta-coefficients
.233***
.260***
-.299***-.126***
-.264***
-.487***
-.003
*Based on Pearlin et al. 1990
Zentrum für Psychosoziale MedizinInstitut für Medizin-Soziologie
Services used by Family Carers
Pan-EuropeanNetwork
CoreGroup
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Pan-EuropeanNetwork
CoreGroup
Types of services used by carers (all countries, N=5,923)
% of carers
0 10 20 30 40 50 60 70 80 90 100
Generic: others
Generic: Specialist doctor
Generic: GP
Other specific services for carers
Assessment of caring situation
Training for carers
Respite care
Information
Socio-psychological support
Any service (=ALL)
“generic” services
specific supports
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Pan-EuropeanNetwork
CoreGroup
Respite care used by country
0 10 20 30 40 50 60 70 80 90 100
IT
EL
PL
DE
UK
SE
ALL
% of carers
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Pan-EuropeanNetwork
CoreGroup
Types of socio-psychological support services used in Germany (N=1,003)
0 10 20 30 40 50 60 70 80 90 100
Psychologicalsupport by phone
Home counsellingby social worker
Psycho-socialcounselling
Self-help groups
Support groupsfor family carers
% of carers
!
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All Reports are available on the EUROFAMCARE website:
www.uke.uni-hamburg.de/eurofamcare/ Pan-
EuropeanNetwork
CoreGroup
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Challenges for self-help support
More support for the elderly
Practical and emotional support for family care-givers (caring for carers)
Highlighting the respite-, relief- and support function of self-help
Bridging family systems with self-help support measures and civil engagement
Support approaches for people with dementia (co-operation with Alzheimer associations)
Social integration of dependent older people and their relatives
Mutual aid and supporting the interests of people with rare diseases
Further development of support approaches for people with psychic disorders
…
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Approaches and first steps
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Increasing gap between the rich and poor
Change of average per capita net-income against 1992, in percent
The richest 10%of the population
The poorest 10%of the population
Owing 61%of all private
capital!
Owing 61%of all private
capital!
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Trends in medical care and health care policies
Privatization and commercialization
Rationalization
Individualization and co-payment
Increasing quality management and assurance incorporating patients’ perspectives through legal and contractual obligation
Systematic development of patient orientation and participation
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De-solidarization, commercialization and rationalization
Crediting employers and higher charging the employed
Financial benefits for non-use of health care
Concentration of physicians and specialists in medical care centres
Illness becomes produce, patients become customers
Privatization of hospitals
Economical goals rather than welfare goals
Changing doctor-patient relationship
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De-solidarization, commercialization and rationalization
Extra-payment (IGeL)
Co-payment (medicines, technical aids, therapies, teeth, …)
Cut-downs in the health care provision lists Physio-, ocupational-, speech therapy Rehabilitation Duration of in-patient rehabilitation
Compulsary counseling about cancer screening (possible malus in case of lack of proof)
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Most important reasons for quitting the membership in an SHO (N=148 SHO-representatives)
0% 10% 20% 30% 40% 50% 60%
Internet
Competition through other HCPO
Hartz 4
Lack of time
Not wanting to know about the disease
Information saturization
Age
Internal problems
Topic not relevant any more
Dissatisfaction
Death
Curation
Financial reasons/problems
Kofahl et al. 2009
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Positive Trends: Regulated Quality Assurance in co-operation with
patients and patient-representatives
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Regulated Quality Assurance (I)
Evidence based medicine, treatment, care (as far as possible)
Shared Decision Making (SDM)
QM and Quality reports for hospitals (compulsary)
Patient participation in the development of DMPs
Patient participation in the development of clinical guide lines
Patient participation in quality circles of GPs and specialists in ambulatory health care
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Regulated Quality Assurance (II)
Patient complaint systems in hospitals
Patient ombudspersons in hospitals and other institutions
“Patient-forum” for quality-proved patient-information
IQWiG (Pendant to the NICE, UK)
Strengthening patients rights through better information (“patients’ charter”)
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Regulated Quality Assurance (III)
Self-help friendly hospitals
Self-help friendly practices
Self-help friendly health care institutions
Basis:
Social Security Code V §§135a – 137b: compulsary Quality Management in all health care institutions
Quality Management Directive of the federal joint committee: SHI Care („Vertragsärztliche Versorgung“), 18th October 2005
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1. Rooms, infrastructure, possibilities to present self-help activities
2. Regular patient-information about self-help in daily clinical routines
3. Supporting PR-work
4. Denomination of a self-help mandatory
5. Regular information-exchange between hospital staff and self-help members
6. Integrating self-help groups in education and trainings of hospital staff
7. Integrating self-help groups in quality circles and ethical committees
8. Formally agreed and documented co-operation
8 Quality criteria“Self-help friendly hospital“
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Challenges for self-help support
Promoting the co-operation between health care professionals, self-help supporters and patients
Supporting structural coupling between the systems “health care professionals” and “patients”, “Patients” are increasing their health literacy “Experts” are increasing their understanding of patients’
needs Possible methods: Dialogue-consensus procedures,
mentorship-programs, education and training
Providing information and counseling about co-operation measures and methods
Representing and mediating patients’ interests
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Future perspectives and chances in summary
Increasing chances for self-help and „lay-potentials“ Civil engagement Quality Management in the health care system Promoting measures for patient and health-consumers
sovereignty
• Old and new ambivalences: Emancipation, participation, autonomy, sovereignty of health
care receivers on the one side; - on the other: Compensation of deficiencies (self-help as a substitute),
becoming part of the “establishment”, and legitimating a liberal market system for health care and social goods
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Thank you!