Difficult Decisions: An ethical decision-making tool for care workers working with key populations

1. Difficult Decisions: An ethical decision-making tool for care workers working with key populations Kate Iorpenda Coalition for Children Affected by Aids & International HIV AIDS Alliance

2. Imagine… • You are a care worker. • A 15 year old girl had been coming to your centre for some months for STI screening and condoms. You suspect she is selling sex but she will not discuss it. You have asked her about her parents but she says they don’t care about her. • After some months the girl arrives at the centre with her parents and they quickly tell you that she has given birth to a baby but that she will not reveal the name of the father. • In order to register a child there must be a father’s name on the birth certificate, without a name the child has no identity and can not access any health , education or welfare services.

3. Imagine… • The parents tell you not to help her unless she reveals who the father of the child is and the baby can be officially registered. • You understand that the girl may not know who the father is and that even if she does she may not be able to reveal his identity but you also realise that the baby has a right to an identity and to access support. • Legally the parents have the right to decide the services that their daughter should or should not receive. What should you do?  How will you decide?

4. Designing and creating the tool

5. The idea and the challenge Key affected population groups deserve to be treated with dignity and respect and have a right to services that recognise them as having families, including children. But care workers can sometimes be barriers to family-centred services for key populations. How do we support care workers while also challenging them to question their bias against people from key affected populations?

6. Gathering the right people: the project working group The Coalition for Children Affected by AIDS - co-chair; The Global Network of People Living with HIV (GNP+) - co-chair; The International Network of People who Use Drugs (INPUD); The Global Forum of Men who have Sex with Men (MSMGF); The Global Network of Sex Work Projects (NSWP); The International HIV/AIDS Alliance; The Toronto Central Community Care Access Centre; The University of Toronto Joint Centre for Bioethics; The Ethox Centre at Oxford University; Harm Reduction International; NazCare Home, India; Demetra– Association of HIV Affected Women and their Families – Lithuania; Malawi Network of Carers Living with HIV; The Center of Excellence for Transgender Health, US; PSI Romania

7. The Project We embarked on a 5-year project to: Survey care workers and recipients of care regarding how they handle ethical dilemmas, and the kind of support they could use; Develop a tool to help care workers address these ethical dilemmas; & Evaluate its impact on clients, and on care workers.

8. What did we find out about care workers? • The survey was administered to care workers, and recipients of care, in English, French, Spanish and Russian, in all regions of the globe. • 96 care workers, and 49 recipients of care completed the survey. • We asked: • How often did care workers experience ethical dilemmas? • What kinds of dilemmas did workers face? • How did they normally handle the dilemmas, including which tools they might have?; and • What kind of support could they use?

9. What did we find out about care workers? • We found that • …they did want support, and no useful tools existed in the community-based setting • …over 80% of care workers face an ethical dilemma at least monthly; • …54% experience ethical dilemmas at least weekly; and • …21% experience an ethical dilemma daily. • AND… without ethics guidance.

10. What kinds of ethical dilemmas were most common? • The most common dilemmas were about: • Client safety; • Conflicting client/ organizational expectations; • Suspected abuse (child or adult); and • Respecting client choices

11. The tool has 4 steps

12. It is anchored by a code of ethics Dignity Diversity Advocacy Privacy Security Quality Confidentiality Managing Conflicting Obligations Fair and Equitable Access Accountability Health and Wellbeing Informed Choice Empowerment Cooperation Family Prioritizing children while supporting especially-stigmatized parents

13. STEP 1: Identify the facts and assumptions

14. STEP 2: Determine the Ethical Values & Principles in Conflict

15. STEP 3: Explore Options and Consider their Strengths and Weaknesses

16. STEP 4: Choose an Option, Take Action, Evaluate & Debrief

17. Faced with an ethical dilemma, what is ethical decision-making? • A dilemma is a situation in which a difficult choice has to be made between two or more equally undesirable alternatives. • When faced with an ethical dilemma, ethical decision-making is about asking yourself what should we do that will do the most good, or if that isn’t possible, what will cause the least harm. • Asking, “What should we do?” is not the same as asking, “What does the law tell me to do?”, “What does my organization tell me to do?” or “What does my religion, culture, or society tell me to do?”

18. Key pilot feedback • Key pilot feedback from Malawi, Malaysia, Kyrgyzstan, Ukraine and the United States included the need for: • More basic information about the meaning of “ethics”, “a dilemma” and an “ethical dilemma” • Orientation slides for the organizational lead, plus a clearer appendix for use in orientation & supervision of care workers using the tool; • A pocket guide – key questions for quick reference in the field when dealing with for more immediately pressing decisions;

19. Launch & evaluation • We’ll be launching the tool at AIDS 2014; • An external evaluation in 2014 in 3 sites will evaluate: • How the tool is being implemented and used with an organization; & • Its impact on clients & on care workers.

20. Thanks to our working group members Jude Byrne, MingaudasBusevičius,  Georgina Caswell, Harriet Chiomba, Dr. Mikey Dunn, Anjali Gopalan, Kimberley Ibarra, Kate Iorpenda, John Miller Ruth Morgan-Thomas, Ed Ngoksin Maria Phelan, LinneaRenton, Mohan Sundararaj, Frank Wagner,