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Presentation on theme: "Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie "European Expert Meeting on Self-Help Support" The way from passive health consumers."— Presentation transcript:

1 Zentrum für Psychosoziale Medizin Institut 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 kofahl@uke.de

2 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 2 Alf Trojan, 2008

3 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 3 Overview Citizens 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

4 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie Where we are today:

5 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 5 Self-help Groups Self-help Organisations (SHO)Self-help Clearinghouses approx. 70,000 – 100,000 Self-help groups Approx. 280 Self-help Clearinghouses approx. 355 on national level, number on federal state level unknown local level federal states level 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 of national unions for addiction aid 37 SHO in the forum for people with chronic diseases and disabilities 104 HCPO for people with chronic diseases and disabilities ----------------------------- Federal Association SELF-HELP (BAG SELBSTHILFE) National centre for addiction aid (DHS) The PARITÄTISCHE Gesamtverband (welfare organisation) Representatives of the leading self-help umbrella organisations on the basis of § 20c Social Security Code V National Clearing House for the Encouragement and Support of Self-Help Groups (NAKOS) National Working Group on self-help groups (DAG SHG) Impact on federal and national level activities especially in the case of rare diseases 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

6 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie How it began:

7 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 7

8 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 8 Citizens movements and grassroots movements in the health care sector 1970ies and 1980ies: 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)

9 Zentrum für Psychosoziale Medizin Institut 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

10 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie Action Research – Research Action

11 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 11 The beginning of self-help research in 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.

12 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 12 The beginning of self-help research in Germany In the late 70s and 80s 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! Active citizenship! Social integration! Empowerment! Consumer-/citizen-orientation! Third sector!

13 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 13 The beginning of self-help research in 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.

14 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 14 Knowledge is power Being independent through self-help in groups Knowledge is power Being independent through self-help in groups Desire Knowledge Opposition Desire Knowledge Opposition

15 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 15 Self-help groups: Together we are stronger Self-help groups: Together we are stronger

16 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 16

17 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 17 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)

18 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 18 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

19 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 19 Development of self-help groups and number of participants between 1985 and 1995 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.

20 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 20 Today: 273 self-help clearinghouses are supporting appr. 40,000 self-help groups

21 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 21 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-operation Nowadays 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, …

22 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie Who is joining self-help groups? Results from the National Telephone Health-Survey 2003

23 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 23 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 Male2,74,50,47,692,3100 Female4,84,50,69,990,1100 18–29 years2,11,90495,9100 30–39 years4,13,40,37,892,1100 40–65 years56,80,912,787,3100 über 65 years2,850,78,591,5100 Western Germany3,84,70,69,190,9100 Eastern Germany3,63,90,27,792,3100 Under-class2,54,30,47,292,8100 Middle-class3,64,80,58,991100 Upper-class4,64,20,69,490,5100 German origin3,84,60,58,991100 Migrational background3,73,30,57,592,5100 Total in %3,84,50,58,891,2100 Total (N)316376437357.5838.318

24 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 24 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 Male2,74,50,47,692,3100 Female4,84,50,69,990,1100 18–29 years2,11,90495,9100 30–39 years4,13,40,37,892,1100 40–65 years56,80,912,787,3100 über 65 years2,850,78,591,5100 Western Germany3,84,70,69,190,9100 Eastern Germany3,63,90,27,792,3100 Under-class2,54,30,47,292,8100 Middle-class3,64,80,58,991100 Upper-class4,64,20,69,490,5100 German origin3,84,60,58,991100 Migrational background3,73,30,57,592,5100 Total in %3,84,50,58,891,2100 Total (N)316376437357.5838.318

25 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 25 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 Male2,74,50,47,692,3100 Female4,84,50,69,990,1100 18–29 years2,11,90495,9100 30–39 years4,13,40,37,892,1100 40–65 years56,80,912,787,3100 über 65 years2,850,78,591,5100 Western Germany3,84,70,69,190,9100 Eastern Germany3,63,90,27,792,3100 Under-class2,54,30,47,292,8100 Middle-class3,64,80,58,991100 Upper-class4,64,20,69,490,5100 German origin3,84,60,58,991100 Migrational background3,73,30,57,592,5100 Total in %3,84,50,58,891,2100 Total (N)316376437357.5838.318

26 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 26 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 Male2,74,50,47,692,3100 Female4,84,50,69,990,1100 18–29 years2,11,90495,9100 30–39 years4,13,40,37,892,1100 40–65 years56,80,912,787,3100 über 65 years2,850,78,591,5100 Western Germany3,84,70,69,190,9100 Eastern Germany3,63,90,27,792,3100 Under-class2,54,30,47,292,8100 Middle-class3,64,80,58,991100 Upper-class4,64,20,69,490,5100 German origin3,84,60,58,991100 Migrational background3,73,30,57,592,5100 Total in %3,84,50,58,891,2100 Total (N)316376437357.5838.318

27 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 27 I warmly welcome you to our self-help group for victims of self-help groups

28 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 28 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

29 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 29 Geene, Huber, Hundertmark-Mayser, Möller-Bock, Thiel, 2009, p. 18 Expenses for self-help promotion through federal ministries and states, the statutory health insurers and the German 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 increase due to § 20c Social Security Code V Further increase due to § 20c Social Security Code V

30 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie Political awareness and recognition of self-help groups (SHG) and self-help organisations (SHO): The new roles of patients and lay people

31 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 31 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 …

32 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 32 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

33 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 33 Results from the SeKBD-Study Kurtz, Fricke, Schmidt, Seidel, Dierks, 2004 Assessment of potential political influence

34 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 34 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

35 Zentrum für Psychosoziale Medizin Institut 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!

36 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 36

37 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 37 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

38 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 38 Federal Ministry for Self-help Great, innit? Have we wrenched from the state!

39 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie Future Challenges and Needs

40 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 40 Future challenges and needs General societal trends Trends in medical care and health care policies

41 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 41 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

42 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 42 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!)

43 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 43 Increasing age ratio source: eurostat (2002) Population of the EU-15 by age-groups

44 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 44 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

45 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 45 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

46 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 46 German citizens with migrational background (incl. the German re- settlers from Eas- tern Europe) Citizens with non- German nationality

47 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 47 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.)

48 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 48 First Steps

49 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 49 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.dewww.achse-online.de ** Bickel, H.: Informationsblatt der Deutschen Alzheimer Gesellschaft

50 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 50 Founding years of SHOs by type of SHO (N=134) Kofahl et al. 2009

51 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 51

52 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 52 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

53 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie The impact on families – a brief introduction into the EU-project EUROFAMCARE

54 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 54 Pan- European Network Core Group AGE – European Older Peoples Platform Brussels University of Hamburg (Co-ordination Centre) Italian National Research Centre on Ageing INRCA Ancona National School for Public Health SEXTANT Athens University of Bremen The Medical Academy of Bialystok & University of Gdansk Linköping University University of 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

55 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 55 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- European Network Core Group

56 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 56 Pan- European Network Core Group Sociodemographics (description of the samples) Number of Carers 101499099592110001003 5923 ELDERS, women (%)64,571,269,557,772,868,5 67,5% CARERS, women (%)80,977,175,472,076,076,1 76,3% ELDERS age (mean)79,582,078,081,378,679,7 79,8 years CARERS age (mean)51,753,454,565,451,053,8 54,8 years 25 years

57 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 57 Pan- European Network Core Group Relationship to ELDER (% within country) spouse/partner 17,110,922,848,118,218,4 22,2 child 55,460,931,640,551,153,4 48,9 child-in-law 13,99,715,34,513,49,0 11,0 other 6,56,719,52,811,910,1 9,7 nephew/niece 4,28,34,61,33,02,8 4,1 sibling 1,82,43,61,80,93,0 2,3 uncle/aunt 1,00,61,50,90,62,7 1,2 cousin 0,10,51,10,10,90,7 0,6

58 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 58 Pan- European Network Core Group Amount of and main reasons for caring all Hours per week care/support (mean) 515051384539 45,6 h physical illness/disabilities30,618,629,438,843,624,8 30,9 mobility problems24,429,520,49,710,427,9 20,5 age-related decline, old age15,915,010,723,928,012,1 17,5 memory problems / cognitive impairment 5,69,011,119,04,914,9 10,6 non self-caring5,59,911,10,73,510,0 6,9 sensory problems3,24,34,93,92,63,8 social reasons, loneliness, need for company 5,72,35,40,44,32,2 3,5 safety/feeling of insecurity6,47,82,30,50,31,7 3,2 psychological / psychiatric illness / problems 1,91,72,52,21,01,5 1,8 other reason0,71,82,20,91,31,1 1,3

59 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 59 Pan- European Network Core Group all Hours per week care/support (mean) 515051384539 45,6 h physical illness/disabilities30,618,629,438,843,624,8 30,9 mobility problems24,429,520,49,710,427,9 20,5 age-related decline, old age15,915,010,723,928,012,1 17,5 memory problems / cognitive impairment 5,69,011,119,04,914,9 10,6 non self-caring5,59,911,10,73,510,0 6,9 sensory problems3,24,34,93,92,63,8 social reasons, loneliness, need for company 5,72,35,40,44,32,2 3,5 safety/feeling of insecurity6,47,82,30,50,31,7 3,2 psychological / psychiatric illness / problems 1,91,72,52,21,01,5 1,8 other reason0,71,82,20,91,31,1 1,3 Amount of and main reasons for caring

60 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 60 Pan- European Network Core Group all Hours per week care/support (mean) 515051384539 45,6 h physical illness/disabilities30,618,629,438,843,624,8 30,9 mobility problems24,429,520,49,710,427,9 20,5 age-related decline, old age15,915,010,723,928,012,1 17,5 memory problems / cognitive impairment 5,69,011,119,04,914,9 10,6 non self-caring5,59,911,10,73,510,0 6,9 sensory problems3,24,34,93,92,63,8 social reasons, loneliness, need for company 5,72,35,40,44,32,2 3,5 safety/feeling of insecurity6,47,82,30,50,31,7 3,2 psychological / psychiatric illness / problems 1,91,72,52,21,01,5 1,8 other reason0,71,82,20,91,31,1 1,3 Amount of and main reasons for caring

61 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 61 Pan- European Network Core Group all Hours per week care/support (mean) 515051384539 45,6 h physical illness/disabilities30,618,629,438,843,624,8 30,9 mobility problems24,429,520,49,710,427,9 20,5 age-related decline, old age15,915,010,723,928,012,1 17,5 memory problems / cognitive impairment 5,69,011,119,04,914,9 10,6 non self-caring5,59,911,10,73,510,0 6,9 sensory problems3,24,34,93,92,63,8 social reasons, loneliness, need for company 5,72,35,40,44,32,2 3,5 safety/feeling of insecurity6,47,82,30,50,31,7 3,2 psychological / psychiatric illness / problems 1,91,72,52,21,01,5 1,8 other reason0,71,82,20,91,31,1 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.

62 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 62 Pan- European Network Core Group all Hours per week care/support (mean) 515051384539 45,6 h physical illness/disabilities30,618,629,438,843,624,8 30,9 mobility problems24,429,520,49,710,427,9 20,5 age-related decline, old age15,915,010,723,928,012,1 17,5 memory problems / cognitive impairment 5,69,011,119,04,914,9 10,6 non self-caring5,59,911,10,73,510,0 6,9 sensory problems3,24,34,93,92,63,8 social reasons, loneliness, need for company 5,72,35,40,44,32,2 3,5 safety/feeling of insecurity6,47,82,30,50,31,7 3,2 psychological / psychiatric illness / problems 1,91,72,52,21,01,5 1,8 other reason0,71,82,20,91,31,1 1,3 Amount of and main reasons for caring

63 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie Family Care = Burden? Pan- European Network Core Group

64 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 64 Pan- European Network Core Group 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

65 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie Services used by Family Carers Pan- European Network Core Group

66 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 66 Pan- European Network Core Group Types of services used by carers (all countries, N=5,923) % of carers generic services specific supports

67 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 67 Pan- European Network Core Group Respite care used by country % of carers

68 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 68 Pan- European Network Core Group Types of socio-psychological support services used in Germany (N=1,003) % of carers !

69 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 69 All Reports are available on the EUROFAMCARE website: www.uke.uni-hamburg.de/eurofamcare/ www.uke.uni-hamburg.de/eurofamcare/ Pan- European Network Core Group

70 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 70 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 …

71 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 71 Approaches and first steps

72 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 72 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!

73 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 73 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

74 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 74 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

75 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 75 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)

76 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 76 Most important reasons for quitting the membership in an SHO (N=148 SHO-representatives) Kofahl et al. 2009

77 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie Positive Trends: Regulated Quality Assurance in co-operation with patients and patient-representatives

78 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 78 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

79 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 79 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)

80 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 80 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

81 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 81 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

82 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 82 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

83 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 83 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

84 Zentrum für Psychosoziale Medizin Institut für Medizin-Soziologie 84 Thank you!


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