Service Access and Treatment Adherence: Towards a smoother service-user interface

1. Service Access and Treatment Adherence: Towards a smoother service-user interface Lecture 1

2. Theme of 5 lecture series What are those factors that encourage or discourage AIDS vulnerable people to: • Access appropriate health services as soon as they need them; and • Follow the advice of nurses and doctors, especially re taking medication properly.

3. Why are these questions relevant to nurses? Studies in northern countries: Nurses are more successful when they treat their patients with respect, listen carefully to what they say, and treat them as equals (‘Patient-centred treatment’) Question for discussion: Think of your own work setting? Is it better to be the expert who simply tells the patient what to do? Or is it better to respectfully listen to the patient’s own views and to try and jointly construct a way forward?

4. Aim of today’s lecture Study 1: What is an AIDS competent community? (Nhamo et al, 2010, “Contextual determinants ………”) Study 2: Role of the church in building AIDS competent communities?(Campbell et al, 2010, ‘Creating social spaces….. The role of church groups …………..) Study 3: What factors affect access and compliance by AIDS patients? (Skovdal et al, submitted, “Contextual and psycho-social influences ………”)

5. Very brief discussion: What factors prevent patients from following medical advice?

6. For public health to succeed, there is a need for programmes which not only (a) tell patients how they should behave, but also seek to (b) create social environments in which healthy behaviour is possible.

7. Study 1: What is an AIDS competent community? Definition of AIDS Competent Community: where local people work together to contribute to the challenges of promoting • behaviour change, • stigma reduction, • the support of AIDS patients and carers, and • the appropriate accessing and optimal use of existing sources of health and welfare support.

8. What factors determine AIDS competence? • Knowledge about AIDS • Social spaces to talk openly about AIDS • ‘Ownership’ of the problem of AIDS • Confidence in one’s ability to manage the impacts of AIDS on one’s life • Partnerships with agencies and NGOs that can help one cope with AIDS

9. i. Knowledge about AIDS • In an AIDS Competent Community people have access to the HIV/AIDS-related information that they need.

10. ii. Social spaces for frank discussion of AIDS with liked and trusted peers • At this stage of epidemic, even in remote areas, people generally have good knowledge about AIDS • But knowledge is presented to them in ways that they can’t translate into action plans • They lack safe social spaces to discuss their doubts and fears of medical knowledge, and to brainstorm ways they can turn medical knowledge into action in their own lives.

11. iii. A sense of ‘ownership’ of the problem • Denial and stigma are widespread • This failure to acknowledge the existence of the problem is a key deterrent to effective community responses • Even when people acknowledge the problem, they often respond passively (fatalism), • waiting for outsiders from government or NGOs to come and solve it, • and not acknowledging the role that they also need to play

12. iv. Confidence in their ability to contribute to fighting AIDS in their own life and in the community • In an AIDS competent community, people need to feel confident of their ability to contribute to tackling the problem of AIDS. • Either as INDIVIDUALS, or through COMMUNITY GROUPS that they might belong to.

13. What contribution can ordinary individuals make?

14. What contribution can community groups make

15. v. Partnerships • Its hard for marginalised communities to tackle devastating social problems without outside help. • So whilst each community member has a role to play, communities also need to develop good relationships with any NGOs and agencies that can help them.

16. Nhamo’s research findings: to what extent was their local level AIDS competence in Kumahuswa?

17. i. Was there knowledge? • Factors that prevent people from turning knowledge into action • Gender • Belief in witchcraft • Resistance to new ideas in very traditional community

18. ii. Were there social spaces for dialogue? • Undermined by stigma • ‘Respectability’ associated with controls on from sex and drinking • ‘Masculinity’ associated with multiple partners PROVIDED the man remains strong and healthy

19. iii. Was there ownership of the problem in Kumahuswa? Little ownership, people waiting for outsiders (NGOs etc) to come and solve the problem for them • We are stressed. These are the problems we encounter, can you please help us? We don’t know what to do. (Women’s church group member) • You people from AIDS organisations should come here and talk to our children. Perhaps if you talk to them they will be scared of AIDS. (Bee-keeping Collective member) • People take it as stigma if you use gloves while you are nursing them, please come back and educate them. (Village Health Worker)

20. iv. Was there appreciation of local strengths in Kumahuswa? Women, men and youth undervalued in the community. • Men are regarded as the leaders. Us women’s ideas are disregarded, even when they are brilliant. (Home based care leader, woman, 52) • Men just loiter around the place, they don’t do a thing that is beneficial. They just come home without even carrying a parcel. They are the stresses in our lives. (Leader of women’s savings club) • We can’t do anything because we don’t have the resources and we always have to appoint older people to lead us because we are regarded as minors. This has demoralised a lot of young people. (Political youth group, focus group)

21. The community had several strong community groups Many strong community groups e.g. • Soccer club • Church • Burial society

22. v. Were there empowering partnerships with outside organisations? • They no longer bring the blankets and the food parcels. I am not sure why................ I am not sure who initiated this group………….. Our club members don’t network with anyone else besides each other…………. We have run out of gloves and need a refresher course. ………….. I am not sure of the future plans of this group because I am not part of the management.(Home-based club chair, woman, 52)

23. Summary of Kumahuswa Study There were many obstacles to AIDS competence in Kumahuswa. However there were also many potential strengths and resources: good knowledge, great reservoirs of love and kindness to people with AIDS (despite stigma), and many strong community organisations.

24. Zimbabwe is one of the few countries in Africa which has succeeded in reducing levels of HIV/AIDS transmission (albeit very slightly) – through behaviour change (including reduced sexual partners and increased condom use). However, these reductions are small, and a lot more work remains to be done. Levels of transmission remain high, and the medical challenges posed by high levels of people with AIDS remain very strong.

25. Study 2: Role of the church in building AIDS competent communities? • Negative impacts of the church • Positive impacts of the church • The way forward? Reference: Campbell, C., Skovdal, M., and Gibbs, A.. (2010) “Creating social spaces to tackle AIDS-related stigma: Reviewing the role of Church groups in sub-Saharan Africa” AIDS and Behaviour

26. Negatives: In some ways, the church is an obstacle to local AIDS competence (moralistic teachings about sex, support for male domination of wives in the family, some churches support male polygamy)

27. Positives: In other ways, the church is a wonderful resource offering spiritual and practical support to people living with AIDS.

28. Way forward: Haddad: There is a need for new theologies that assist church leaders to respond more positively to AIDS. The Bible is full of examples of love and compassion for sinners and for prostitutes, amongst others. It is has many examples of women’s potential for leadership and wisdom, and of the grace and wonder of youth.

29. Possible discussion point: Discuss your own views of the response of the church to HIV/AIDS in the communities where you live and work. In what ways has the church perpetuated stigma and the domination of women by men? In what ways has it made a positive contribution to community responses to AIDS?

30. Study 3: Influences on ART adherence in rural Zimbabwe

31. Patient access to resources • Poverty • Food • Distance to clinic • Transport costs • Hospital costs

32. Patient’s cultural beliefs • Stigma • Gender roles • Diminishing influence of traditional healers

33. Patients social relationships • Social support • Relationship with nurses • Children • Treatment partner

34. Organisational matters • Churches (and faith) • Food aid from NGOs • Health service improvements • Counselling • Wasting time and opening hours • Shortages of drugs at health services

35. Conclusion A variety of psychological and social factors impact on ART compliance. Health professionals need to be aware of these factors, so that they can help patients to predict them, and think of ways in which they shall overcome obstalces to adherence, if possible before they arise.

36. Group discussion Drawing on your own experience, what factors support and hinder your own patients from accessing services and adhering to their treatment. What do you already do in your nursing work to tackle some of these problems? What more could you be doing in your own work to tackle these kinds of problems (share experiences and strategies with other nurses in your discussion group).