1. SOWK 6003 Social Work Research Week 2 - Ethics of Social Work Research By Dr. Paul Wong D.(Psyc.)

2. Overview Ethics and Social Work Research Weighing Benefits and Costs Institutional Review Boards (IRB) and Human Subjects Issues In-class exercise – ethics approval application

3. What is ETHICS? When most people think of ethics (or morals), they think of rules for distinguishing between right and wrong, such as the Golden Rule ("Do unto others as you would have them do unto you"), a code of professional conduct like the Hippocratic Oath ("First of all, do no harm"), a religious creed like the Ten Commandments ("Thou Shalt not kill..."), or a wise aphorisms like the sayings of Confucius. This is the most common way of defining "ethics": ethics are norms for conduct that distinguish between or acceptable and unacceptable behavior.

4. Why study research ethics? 1.Some of these norms promote the aims of research, such as knowledge, truth, and avoidance of error. 2.Since research often involves a great deal of cooperation and coordination among many different people in different disciplines and institutions, many of these ethical standards promote the values that are essential to collaborative work, such as trust, accountability, mutual respect, and fairness. 3.Many of the ethical norms help to ensure that researchers can be held accountable to the public. 4.Ethical norms in research also help to build public support for research. 5.Finally, many of the norms of research promote a variety of other important moral and social values, such as social responsibility, human rights, animal welfare, compliance with the law, and health and safety.

5. Ethical issues in social work research Fundamental principles in research on human subjects –Beneficence: to promote and ensure benefit –Do no harm/ minimizing the chances of harm –Justice: fairness and equitable distribution of benefits

6. Code of Ethics for social work and social care research (Bulter, 2002) 1. Ethical awareness throughout the whole process 2. Benefit for the participants or study population 3. Respect human rights and social justice 4. Protection of harm 5. No-discrimination and non-intrusive 6. No intrusion to participants’ interests 7. Competence of researchers 8. Autonomy to participate 9. No foreseeable potential harm 10. Right to decline at any point 11. Proxy consent for those who are incapable to make decision 12. Consent with language that can be understood 13. Confidentiality 14. Accurate reporting 15. Acknowledgement in publications

7. Weighing benefits and costs In some instances, the long term benefits of a study are thought to outweight the violations of certain ethical norms But, determining whether a study ends justify its means is a difficult and often highly subjective process Institutional Review Boards (IRBs) make such determinations in approving studies

8. Institutional Review Board (IRB) Institutional Review Boards (IRBs) are specialized committees required by HHS regulations that safeguard the rights and welfare of human subjects. IRBs determine “the acceptability of proposed research in terms of institutional commitments and regulations, applicable law, and standards of professional conduct and practice”. The major roles of IRBs in the oversight of research are: Initial review and approval or disapproval of the proposed research activity Ensuring that the proposed informed consent process meets all of the requirements of 45 CFR 46.116informed consent45 CFR 46.116 Providing continuing oversight for progress reports and protocols for ongoing research studies

9. Other Forms of Research Misconduct Plagiarism Fabrication and Falsification of Data Infringement of Intellectual Property Improper Ascription of Authorship Non-Disclosure of Potential Conflict of Interest

10. In practice http://www.hku.hk/rss/HREC.htm#

11. Case study: The "psychological autopsy study" in Hong Kong" By Dr. Paul WC Wong D.Psyc (Clinical )

12. Outline Part one. Psychological Autopsy Study in Hong Kong Part two. Information about “survivors” gathered from the PA study

13. Part one Psychological Autopsy Study in Hong Kong

14. A retrospective 150 cases and 150 controls psychological autopsy study of suicides aged 15 to 59 in Hong Kong was conducted recently. Chen, E. Y. H., Chan, W. S. C., Wong, P. W. C., et al. (2006). Suicide in Hong Kong: A case-control psychological autopsy study. Psychological Medicine, 36(6), 815-825.

15. Purpose to explore multidimensional, which includes clinical, psychological, and social risk factors of suicide among the 15-59 years old of the Hong Kong Chinese population using the psychological autopsy methodology

16. Methodology

17. Psychological Autopsy Study Psychological autopsy was developed as a procedure parallel to physical autopsy in an effort to assign cause in difficult-to-determine deaths A research method by which comprehensive information is collected retrospectively about a deceased who die by suicide.

18. Methods Employed a case-control matched methodology Subjects: Suicide cases: 150 suicide cases recruited by two methods Coroner’s Court Forensic Pathology Services Control cases: 150 control cases recruited from a randomly selected population study

19. Measures Four major domains: Socio-demographical Life events Clinical/Psychiatric Psychological

20. Measures (I) Socio-demographics factors : –Living arrangement –Martial status –Family background –Educational attainment –Employment status –Family interaction –Domestic Violence –Social support (II) Life events: –Relationship –Work/school –Financial difficulties –Legal –Family

21. Measures (III) Clinical –Axis I disorders by Structural Clinical Interview for DSM-IV-TR (SCID) –Two Axis II disorders by symptom checklist: Borderline Personality Disorder Antisocial Personality Disorder –History of suicide attempt (IV) Psychological conditions –Impulsivity –Compulsive buying behaviour –Problem-solving skill –Healthy living style

22. Procedures 1.open-ended interview about circumstances of death (preferably 49 days after the incident and within a year) 2.semi-structured interview about socio-demographics and psychological conditions 3.semi-structured psychiatric interview (Structural Clinical Interview for the DSM-IV-TR, Spitzer et al., 1994) administered by trained interviewers

23. Procedures Review of Coroner’s files – Coroner’s files were reviewed to supplement and validate the information provided by the informants. Consensus meeting – Detailed case discussions took place to ensure the validity of information and to provide optimal interpretation of potentially ambiguous information.

24. Analyses Series of univariate analyses with cases and age- gender matched controls; Analyses based on binary logistic regression; Odds ratios were derived by comparing discordant pairs: [case(+) control(-) vs. case(-) control(+)]; and Secondary multivariate analysis based on logistic regression.

25. Results

26. Subjects Demographics (Suicides) Age 15-24 (14%) Age 25-44 (50.7%) Age 45-59 (35.4%) Male (61.3%) Demographics (Controls) Age 15-24 (16%) Age 25-44 (53.3%) Age 45-59 (30.7%) Male (64%)

27. Subjects Methods of Suicide 72 (48.0%) died by jumping from height 50 (33.3%) by charcoal burning 19 (12.7%) by hanging 2 (1.3%) by drug overdose 7 (4.7%) by other methods (wrist slashing, drowning, jumping in front of a train, ingesting insecticide, poison by domestic gas, stabbing, suffocation).

28. Binary logistic regressions (I) Socio-demographics factors : –Never married** –Low educational level* –Lived alone*** –Unemployed*** –Monthly income below HKD$7000*** –Presence of debt*** –High Level of expressed emotions*** –Physical abuse – subject as recipitent/perpetrator** –Social support*** (protective factor) (II) Life events : –Relationship* –Work/school* –Financial difficulties* ***p<0.001; **p<0.01; *p<0.05.

29. Binary logistic regressions (III) Clinical –At least one psychiatric diagnosis*** –Ever received some kind of emotional treatment*** –Ever received psychiatric treatment*** –Presence of chronic physical illness*** –Previous suicidal attempt(s)*** (IV) Psychological conditions –Impulsivity*** –Compulsive buying behaviour** –Problem-solving skill*** (protective) –Healthy living style*** (protective) ***p<0.001; **p<0.01; *p<0.05.

30. Mutlivariate Logistic Regression At least one diagnosis (OR=28.67; CI:8.65-94.98)*** At least one past attempt (OR=24.78; CI:4.04-152.00)** Indebtedness (OR=10.08; CI:2.31-44.04)** Unemployment (OR=8.65; CI:2.29-32.74)** Never married (OR=7.29; CI:1.96-27.04)** Social Support Content (OR=0.27; 0.13-0.56)*** ***p<0.001; **p<0.01.

31. Discussions

32. Summary of findings 1) Suicide, among the 15-59 Hong Kong Chinese population, is a multi-factorial problem which includes psychiatric, psychological, socio-demographical risk factors; 2) Similar to many other countries, the risk factors of suicide found in other countries are applicable in Hong Kong; (3) However, the magnitude of effects of these suicide risk factors are slightly different - socio-economic factors seem to play stronger roles in suicidal behaviour among Hong Kong citizens

33. Implications of this study (1) Improve the detection, treatment, management and prevention of psychiatric disorders in the population –through population-based approaches that encourage positive mental health, improved public understanding and attitudes of mental illness, and improved detection, treatment and management of mental disorders

34. Implications of this study (2) Although population-based initiatives may reduce rates of mental disorders within the population, inevitably a fraction of the population will develop such disorders –aims to prevent the people in Hong Kong who are at risk of suicide (unemployed, indebted, living alone, or never married) from developing suicidal risk in unsatisfactory, disadvantaged or dysfunctional environments

35. Implications of this study (2) A) population-based programmes designed to reduce social inequity and social discrimination B) focuses on the development of general mental health programmes, which aim to foster mental wellbeing, such as resiliency, and which address the psychosocial needs of those exposed to stress and adversity C) community-based competency-promoting and stress-reducing programmes to reduce the risks of mental disorders and behaviours with which suicidal behaviour is associated

36. Implications of this study (3) Limit access to means? There is limited scope for the restriction of access to means of suicide, in particular jumping from a height at home and hanging at home, About 80% happened at home However: Barriers on bridges Screen doors at train stations Sell charcoal only at BBQ areas Installation of Carbon Monoxide detectors in certain areas

37. The story doesn’t stop here!!!!

38. Part two Deceased families of the people died by suicide We knew something about the Deceased, what about the families of the people died by suicide?

39. Things to think about… Will this study bring harm to the families of the suicides? Any ways to minimize the harmful effects, if there is any? How to enhance the benefits of participating in the study?

40. Empirical study on people bereaved by suicide and services for these individuals are very limited in the Asia region (Farberow & Andriessen, 2001). Hong Kong is of no exception.

41. What do we know about the people bereaved by suicide in Hong Kong? Based on the 150 people bereaved by suicide who participated in a psychological autopsy study ( interview timing mean=7.3 months, SD=4.0 ) ……

42. The majority of the informants were the spouses (n=37, 24.7%), parents (n=31, 20.7%), and siblings (n=44, 29.3%) of the deceased, 21 (14.7%) were children, and 17 (11.3%) were others including friends, relatives, and co-workers (Chen et al., 2006). Who were they?

43. Apart from the typical bereavement reactions such as cognitive disorganized, dysphoric, somatic distress, and social and occupational disruptions, people bereaved by suicide…… Using a self-developed questionnaire. We found….

44. Items Strongly Disagree n(%) Disagree n(%)Neutral n(%)Agree n(%)Strongly Agree n(%) Perspective on Suicide Suicide is a kind of relief for the deceased 53(35.3)13(8.7)11(7.3)23(15.6)48(32.0) I think that his/her suicide is pre- determined by fate and nobody can prevent it from happening. 49(32.7)13(8.7)19(12.7)23(15.3)43(28.7) Stigmatization I will not tell other the reason for his/her death. 36(24.0)26(17.3)24(16.0) 14(9.3)47(31.3) I fear that others may think I will follow his/her steps (committing suicide). 70(46.7)9(6.0)15(10.0) 10(6.7)43(28.7) Psychological I am lonely. 63(42.0)16(10.7)19(12.7) 15(10.0)32(21.3) I am anxious. 36(24.0)13(8.7)32(21.3) 28(18.7)36(24.0) I am miserable. 39(26.0)14(9.3)25(16.7) 42(28.0) I feel comfortable for there is someone who listens to my sharing. 28(18.7)13(8.7)40(26.7)21(14.0)44(29.3) Social adjustment I visit relatives and friends. 8(5.3) 15(10.0) 23(15.3)89(58.7) I get along with family. 4(2.7)3(2.0)15(10.0) 33(22.0)87(58.0) I show empathy and support to my family. 56(37.3)24(16.0)30(20.0) 86(57.3) I cannot cope with daily routines. 87(58.0)19(12.7) 12(8.0)15(10.0)10(6.7)

45. The information seems to show that…. In Hong Kong About 30% are lonely About 40% are anxious About 45% are miserable About 74% visit relatives and friends About 80% get along with family About 16.7% cannot cope with daily routines - + Wong, P.W.C., Chan, W.S.C., and Beh, P.S.L. (2007). What can we do to help and understand survivors of suicide in Hong Kong? Crisis, 28, 183-189.

46. Their reactions of participating in the study… Nearly 90% of the suicide informants were positive about having been initially approached to participate in the study and only one person felt negatively about being approached. More than 50% of the deceased informants found that it was helpful to talk about the suicide deaths at the interviews. Specifically, 66.1% of the control informants reported that they had a better understanding of the control subjects. More than 90% of all informants did not regret to participate in the study.

47. Reasons for participating in the research The majority of the deceased informants (more than 50%) reported that the principle reasons for participating in the study were hoping that participating in the study could enhance suicide prevention and hoping that others could learn from their painful experiences. “I don’t want to see others committing suicide like he did, and believe that this research is helpful in suicide prevention.” “I hope the findings of this research will let more people understand the underlying reasons of suicide.” “I hope the information I provided can help those in needs, and let the public know more about the experiences of suicide survivors.” “A tragedy had already happened on me, let me be a negative example, so as to let every parents prevent experiencing the same loss.” Another major reason sated by some informants (n = 16) was hoping that participating in the study could help them to understand why their loved ones died by suicide.

48. Thus, conducting a Psychological Autopsy Study is probably one of the best ways to initiate any form of work towards suicide survivorship. It creates a PLATFORM for researchers, clinicians, and survivours for the exchange of information.

49. In class activity Write your own ethics approval application/informed consent!!

50. Example of an ethics approval application

51. In class exercise Write your own ethics approval application/informed consent!! http://www.hku.hk/rss/HREC.htm#

52. Homework Visit the National Institutes if Health (NIH) Human Subjects/Research Ethics Tutorial site at http://cme.nci.gov/.http://cme.nci.gov/ Then click on the prompt for “Human Participant Protections Education for Research Teams.” If you take the online tutorial at this site, you will receive a certificate of completion that some IRBs in the US now require of principal investigators and their research assistants working on studies involving human subjects. Please send me the e-certificate upon your completeion to paulw@hku.hk

53. The End Thank You http://csrp.hku.hk paulw@hku.hk