Social factors impacting on children’s adherence to ART

Lecture 3

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.

Aim of lecture

1. Background to children’s ART adherence2. Barriers to children’s ART adherence3. Facilitators to children’s ART adherence4. Social norms5. Way forward6. Group discussions: discussing the way forward

Lecture overview

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

1. Background – children’s adherence

It is important to look at how social environments can facilitate adherence for two main reasons

1. 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.

2. Knowing what social processes facilitate adherence, will help us develop responses that can improve adherence even further

1. Background – facilitators vs barriers

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).

1. Background – Social Capital

‘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)

1. Background – AIDS Competent Community

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)

2. Barriers to children’s adherence

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

Short discussion

There has been anormalisation 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.

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

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

3. Facilitators: NGO activitiesNGOs 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

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

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

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

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

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

3 . Facilitators: Children’s active participation

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

3. Summary

4. Relating it to social normsObservations in Zimbabwe Norms Community solidarity with guardians Community solidarity with children Solidarity between guardians and children Increased guardian commitment to children Solidarity between nurses and patients Solidarity amongst guardians themselves

Solidarity

Recognition of children with AIDS (as normal kids – as part of the normalisation of AIDS, they were less likely to be seen as ‘other’)

Recognition of children’s right to take control over own health Recognition of the value of caring as an activity

Recognition of children’s social value

Commitment of children’s treatment partners Support by community members Assistance available from NGOs Co-operation between NGOs and health facilities for improved care

Ethic of care and assistance

Restoration of nurses role to save lives Restoration of hospitals as health care providers Enhancement of guardian’s agency – both in relation to their

competence and confidence Enhancement of children’s agency

Enhancement of agency and empowerment

(Campbell et al., in press)

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

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?

5. Ways forward

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?

6. Group discussions

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?

6. List of reminder

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.

References