Social factors impacting on children’s adherence to ART

1. Social factors impacting on children’s adherence to ART Lecture 3

2. Aim of lecture • To sensitise nurses to the importance of local contexts in facilitating children’s adherence to ART • Explore what role nurses can play in developing adherence supportive community contexts.

3. Lecture overview • Background to children’s ART adherence • Barriers to children’s ART adherence • Facilitators to children’s ART adherence • Social norms • Way forward • Group discussions: discussing the way forward

4. 1. Background – children’s adherence • Much has been written about children’s ART adherence • 91% of all new child HIV infections occur in sub-Saharan Africa (UNAIDS and WHO, 2009) • The majority of work is looking at barriers to children’s adherence to ART • Little effort has been made to show how social environments can facilitate adherence • There is a need for nurses to contribute to the making of social environments that enable ART adherence

5. 1. Background – facilitators vs barriers • It is important to look at how social environments can facilitate adherence for two main reasons • As children’s adherence in sub-Saharan Africa is much better than in North America for example, it is beneficial to recognise and learn from the social factors in Africa that facilitate adherence. • Knowing what social processes facilitate adherence, will help us develop responses that can improve adherence even further

6. 1. Background – Social Capital • Social Capital refers to social networks within a community context, networks that have a protective quality on health • Communities with good levels of ‘Social Capital’ - understood as the gains resulting from living in a community where people help each other - can impact • The spread of HIV (Pronyk et al., 2008) • AIDS related stigma (Chiu et al., 2008) • Adherence to antiretroviral therapy expenses (Ware et al., 2009).

7. 1. Background – AIDS Competent Community • ‘AIDS competent community’ • Is a social setting in which people are most likely to work collaboratively to optimise HIV/AIDS prevention, care and treatment • We need to work towards an adherence competent community • Social actors that promote adherence competent contexts for children on ART are: • children themselves • their guardians • community members • health service providers (e.g. Nurses) • NGOs (Campbell et al., in press)

8. 2. Barriers to children’s adherence • Level of treatment • Children may not like the taste and formulation of drugs • Children unaware of their HIV status may refuse to take drugs • Household level • Age, physical and mental capabilities of guardians • Poverty and lack of food • Institutional level • Fees, long waiting times, impatient or unsympathetic nurses, poor communication between nurses and patients • Social and structural factors • Stigma and discrimination • Distance to health clinics (Campbell et al., in press)

9. In the community where you work, what obstacles to ART adherence do children and their treatment partners face? Short discussion

10. 3. Facilitators: community understanding and support • Caring for HIV-infected children is seen as commendable, making it easier for guardians to negotiate material and financial support from other community members • “The consultation fee is affordable. Even if you do not have money, you can easily ask a fellow community member for a dollar, and repay them later.” • Carolyn, child carer There has been a normalisation of HIV/AIDS “There is a huge difference now – if an HIV positive person eats off a plate and I wash it and give it to the next person, they will be willing to eat off it.” Sandra, child carer.

11. 3. Facilitators: NGO activities • NGOs can distribute food parcels to members with ART-receiving children • “Some children are cared for by old grandparents so they lack food – but now that problem has been met because a lot of organizations, such as CAREAF, are distributing food in the area.” Marie, nurse NGOs can implement community-based counseling and HIV testing programmes “We got to know about the child’s status through the Mirdza programme running in our area, we were told about the counselling and testing for children at the school in September.” Marjorie (female), child carer

12. 3. Facilitators: Access to health services • Accessible and constant supplies of drugs are necessary to give patients confidence in health services • “At our hospital we have been blessed. We get ARTs for free and we have never run short of them - they are available each time we go to collect our monthly supplies.” Grace, child carer Counseling of treatment partners and grouping them together into support groups help facilitate adherence. “When you get to the hospital and you are done with treatment issues then you go for lessons on how to look well after the child, I think I can say it helps us a lot in my life” Hilda, child carer

13. 3. Facilitators: The role of treatment partners Child carers were keen to demonstrate their dedication and commitment as child carers. “I rush to the clinic at the slightest sign of sickness. I first go to my nearest clinic that is at Samachina. If they refer me to Dabon and if there is still time I rush, but when it is late I go the next day.” Marjorie (female), child carer Child carers had a key role to play in working with nursing staff to facilitate and monitor medication. “We need to establish who exactly is staying with this child, and who will continue to take care of them. We can’t take compliance for granted, we cannot give drugs to a person who is staying by herself. We need to have a point of contact, someone who will look out for the patient, that is the treatment buddy.” Nicole, nurse

14. 3 . Facilitators: Children’s active participation Children take an active role in ART adherence, reminding themselves and their caregivers about their medication. “Sometimes the child would be the one reminding the child carer. The good thing about well-informed children is that they are more likely to remember all we tell them and they do exactly what we have advised. They will never forget their review dates and when they come on that date, the care giver will say they have been reminded by the child.” Colin, nurse

15. 3. Summary • The gradual public acceptance of HIV/AIDS (in the face of initially strenuous denial) and increased health service effectiveness associated with treatment availability have created a favourable climate for ART adherence. • If nurses are to facilitate adherence within the context of these two favourable developments, they need to consider the inter-relations of five networks • Community • NGOs • service providers • the guardians and • children themselves

16. 4. Relating it to social norms (Campbell et al., in press)

17. What other social processes have you found to help children adhere to ART? Do these social processes relate to any social norms that you believe characterise the context you work in? Short discussion

18. 5. Ways forward • Programmes seeking to facilitate children’s adherence to ART are most likely to succeed if they facilitate supportive social norms • Nurses need to consider social norms and resources within their context and explore how they can capitalise on these resources • E.g., draw on their empowerment to show solidarity and be conscious about how they communicate with ART users • Set up support groups • Liaise with NGOs, encouraging them to provide services (such as food aid to some of your patients or information campaigns) • What else?

19. 6. Group discussions • What can you, as nurses, do to develop adherence supportive context for children on ART? • What questions will you need to ask yourself to help facilitate children’s adherence to ART? • How can you communicate and share knowledge gained today with your colleagues? • How can you become more actively engaged in facilitating children’s adherence to ART? • How can you and your colleagues become more aware of barriers and constraints that may interfere with children’s adherence to ART and explore ways improve children’s ART adherence? • How does understanding the social context in which your health clinic is located help you facilitate the child’s adherence?

20. 6. List of reminder • In groups of five, develop a list of reminder that you can adopt upon your return to the clinic to ensure that you and your colleagues help create an adherence supportive context. • Include in your list: • Opportunities for networking • Involvement of NGOs and other government services • Nurse behaviours, attitudes and values and their impact on nurse/patient communication • Community initiatives that you can instigate or encourage • Assessing and understanding the lives of patients • Discuss how feasible it will be to implement any of these activities. What can you, or a group of nurses, do to successfully adopt your list of reminders?

21. References • Campbell, C., Skovdal, M., Madanhire, C., Nyamukapa, C., Gregson, S. (in press) Building adherence-competent communities: factors promoting children’s adherence to anti-retroviral AIDS treatment in rural Zimbabwe. Health and Place • Chiu, J., Grobbelaar, J., Sikkema, K., Vandormael, A., Bomela, N., Kershaw, T., 2008. HIV-related Stigma and Social Capital in South Africa. AIDS Education & Prevention 20, 519-530 • Pronyk, P., Harpman, T., Morrison, L., Hargreaves, J., Kim, J., 2008. Is social capital associated with HIV risk in rural South Africa? Social Science & Medicine 66, 1999-2010 • UNAIDS, WHO, 2009. AIDS Epidemic Update December 2009. UNAIDS, Geneva. • Ware, N.C., Idoko, J., Kaaya, S., Biraro, I.A., Wyatt, M.A., Agbaji, O., Chalamilla, G., Bangsberg, D.R., 2009. Explaining Adherence Success in Sub-Saharan Africa: An Ethnographic Study. PLoS Med 6, e1000011.