Bischof, G., Berndt, J., Bischof, A., Besser, B., Rumpf, H.J.

1. Bischof, G., Berndt, J., Bischof, A., Besser, B., Rumpf, H.J. University ofLuebeck, Research Group S:TEP (Substancerelated and otheraddictivediseases: Therapy, Epidemiology, Prevention), Dpt. ofPsychiatry and Psychotherapy Prevalence, functioning and treatmentneedsoffamilymembersaffectedbyAddiction in Germany: Findingsfromthe BEPAS study

2. C.O.I. • The authorshavenoconflictofinteresttodeclare • This work was fundedbythe German Ministry of Health

3. Effects of alcohol/drug use on others • Historically restricted to DUI, effects on children (FAS), Delinquency/Violence • Since the 90s increase in international research on harm to others (HtO) due to alcohol/drugs (e.g. Thailand, USA, Denmark, India, Australia, New Zealand, Nigeria, Chile, Sri Lanka, Vietnam, Laos) • Mostly restricted to alcohol • Not restricted to addiction or substance use problems • Mostly own drinking behavior associated with harms caused by others • Specific focus: AFINet/SSCS-Model • No representative data • Mainly based on volunteers/treated FMSs => Generalizability?

4. Burden, Expectancies, Perspectives of Addicted individuals’ Significant others (BEPAS): A multi-method approach • A projectwith a durationof 24 monthsfundedbythe German federal Ministry of Health • Main topics: • Strain and Resources of FMAs • Perceicedneedfor support and Barriersoftreatmentutilization • Aims: • Development of an integrative modelforconceptualunderstandingofStrain and Recoursecof FMAs • Generating ideasforimprovingtreatmentfor FMAs

5. Extensions of the BEPAS-Study Addenda to the „UK Alcohol, Drugs and the Family Research Group“: • Analysis of the relationship between type of addiction and type of relationship • Recruitment of FMAs of pathological gamblers • Overrecruitment of hard-to-reach subgroups • Emphasis on perceived needs and options for facilitating treatment entry • Multi-method approach

6. Multi-method approach • GEDA-Survey of the RKI: Prevalence + morbidity in the general population • Recruitment via self-help groups, counseling-centers and clinics (“theoretical sampling”, over-recruitment if needed): • all types of family relations (Partners, Parents, Children, Siblings) • all types of addictions (alcohol, prescription drugs, cannabis, other drugs, gambling) • Inclusion criteria: 18 yrs.+; addiction persistent in the last 12 months • Proactive recruitment in General Practices/General Hospitals • Expert workshops self-help + treatment providers

7. Survey „Gesundheit in Deutschland Aktuell“ GEDA 2014/15 • Nationwide Health-monitoringofthe RKI (09/14-07/15) • Registration-office based Sample aged >15 yrs. (Range: 15-100) • N=24.824 Participants • Response rate= 27,6% • CATI + SAQ (Online 45,3%, PP 54,7%) • Assessment ofhealthbehavior, Psychological and physical Health and Utilizationofmedical care • Inclusionofquestions on relatives sufferingfromaddiction, kindofaddiction and relationshipstatus • Do youhave a relative with an addictiondisorders (excepttobacco)? • Yes, problem was active in the last 12 months • Yes, but problemisremittedsince 12 months at least • No

8. Prevalence family members of addicted individuals

9. Prevalence of family members: type of addiction

10. Prevalence of Family members: Relationship status

11. Relationship status to addicted individual

12. Qualitative Interviews: Proactive Approach • Systematic Screening in GP/GH settings • Sample of FMAs not a priori affiliatedwithself-help, treatmentorrespondingtoadvertisement • FMAs withno/littlecontacttothetreatmentsystem • 1004 valid Screening questionnaires • FMA (Lifetime): 178 (17,7%) • FMA (12-month) : 115 (11,5%) • Informedconsent: 59 (51,3%) • Minus 12 neutral drop-outs 47 (40,9%) • Realisedinterviews:34 (72,3%)

13. Conduct of the qualitative interview • At neutral offices at theUniversities/ cooperatingpartners / at FMAs home • Open, half-structured Interview (ca. 90 Min) followingtheAFINet-form • Interview recordedbytape + protocol in briefoutlines • Focus on examples & verbal quotes • After endingthe interview, FMAs wereaskedtofill out standardizedquestionnaire (approx. 30 Min.)

14. Interview form: Thematic Structure 1. History and nature of the relative´s drinking/Drug Use/Gambling 2. Effects on the family member 3. Coping efforts of FMA 4. Resources / Perceived support 5. Perceived need for support

15. Evaluation • Generating and categorizing the leads • Case conferences: Reconsiliation of protocols in group discussions • Generation of categories via protocol analysis • Continuous expansion of the list of categories • Generation of 25 main categories and 178 sub-categories

16. Gender differences in FMAs • Females • More psychologicalstrain Depression / Sleepingdisorders • More feelingsofguilt and shame • Coping: self-abandonment • More experienceofpsychological and physicalviolence • Males • Less in confinement in social life / everydaylife • Coping: More boundaries/ cessationofresponsibility • Lessperceivedneedfor professional help

17. Stress/Strain according to type of addiction • Alcohol • Aggression and physicalviolence • Coping: settingboundariestowardstheaddicted individual • Worriesabouttherelative´shealth and helplessness • Feelings ofshamewhenconfrontedwithdrunkenness • Pathologicalgambling • Financial problems / Existential fear • Coping: financialindependence • Continuousfearofrelapse • Loss oftrust

18. Stress/Strain according to type of relationship • Parents • Remorse / Feelings ofguilt • Worriesabouteducation / futureofthechild • Coping: controlattempts / self-abandonmentforthechild • Partner/in • Loss ofcloseness / trust • Coping: Emotional alienation

19. Characteristics of untreated FMAs • More distanttypesofrelationship => lessoftenlivingtogetherwiththeaddicted individual • Mainlychildren and siblings, lessoften • Elevated rate of FMAs relatedtoindividualswithalcoholproblems vs. Cannabis and pathologicalgambling • Relationshipratedaslessclose and important • Coping strategies: moreoftenwithdrawing (resignation/ acceptance) • Strainmoreoftenrelatedtodistantevents • But also a numberof FMAs withseverestrain! • → Barriersfortreatment? • → perceivedneeds?

20. Untreated FMAs Strongerpublicpresenceof Help for FMAs Lack oflocaloffers and restrictedopeninghours Lack ofknowledgeaboutexistingoffers Alertnessof GPs and Therapists Fixed / trustfulcontactpersons Doubtsconcerningefficacyoftreatmentsystem Barriers Needs + Fear totalktostrangers Behaviouralguidelinesforcoping Change in thepublicview on addiction Wantingtosolveproblemwithout external help Early Intervention / Prevention Fear ofstigmatization/ blame

21. Conclusions • Prevalenceof FMAs in thegeneralpopulations (and PHC) is high • FMAs show high levelsof stress and strain • Overall, replicationof SSCS-model but • Studies usingvolunteers/treated FMAs tendtooverestimatetheburdenof FMAs • Barrierstowardtreatmentfor FMSs include personal and structuralaspects • Person-centeredhelpoffersfor FMSs needtobedeveloped/ implemented • Stigma needstobeadressed also withregardto FMAs

22. Discussion • How and wherecanweimprovereachof AFMs? • HowcanBarriersforcounseling/treatmentbeadequatelyadressed?

23. Thanks to:

24. Thank you for listening! Questions? Kontakt: Dr. Gallus Bischof Tel.: 0451/500-98752 / Email: gallus.bischof@uksh.de