Innovation summary

There is growing awareness that HIV/AIDS affected and infected adolescents may be at increased risk of mental health problems and distress. Depression and anxiety are associated with treatment non-compliance, which can have a significant impact on health status. Moreover, HIV positive adolescents’ support structures can be weakened by challenging home environments and stigma in the community. The goal of Khuluma is to provide psychosocial support for HIV positive adolescents in South Africa using mobile technology.

The Khuluma model is an integrated, cost-effective and scalable mHealth platform that leverages the power of small groups to facilitate interactive, closed support groups of 10 to 15 participants. Currently live with 99 HIV positive adolescents, participants are able to communicate amongst themselves and with a facilitator and mentor (an HIV positive adolescent who has been through Khuluma) via mobile phone about any topic that they deem important to discuss.

 

Impact summary

  • 99 HIV positive adolescents sent over 40,000 SMSs over 3 months
  • The program increased perceived feelings of social support and decreased internalized social stigma
  • Only £82/$125 USD per participant per session

"I learned that I should not be afraid to talk about my feelings.  Before I started in the Khuluma group I felt like I was different to other people."

 

-Khuluma participant

 

Innovation details

There are two key challenges facing South Africa’s public health system.

  1. Increasingly high prevalence of HIV among the adolescent population, where currently over 15% of young women and 5% of young men aged 15-24 in South Africa are infected with HIV.1
  2. An increasing burden of mental illness, where nearly 1 in 3 South Africans will suffer from a mental disorder in his or her lifetime – a higher prevalence than any low-or middle-income country and the third-biggest contributor to the national burden of disease.2-3

Project Khuluma recognizes that these challenges are intertwined, and tackles them through mobile support groups.4 On one hand, HIV/AIDS affected and infected adolescents may be at increased risk of mental health problems and distress caused by stigma and social isolation.5-7  On the other hand, depression and other mental health disorders can lead to poor treatment adherence8.

The Khuluma model is a social approach to mental illness that brings together two concepts – the power of small support groups, and the power of mHealth – in an integrated platform, which breaks down barriers to create a support group that is accessible, anonymous, immediate and age appropriate. It provides a platform for participants to correct misconceptions about their illness and receive accurate information. It also provides a space where participants feel free to discuss medical adherence and disclose details of their condition.

Khuluma was set up to break down the following barriers to support groups:

Stigma and discrimination
Despite nation-wide campaigns in South Africa, many fear disclosing their chronic illness or HIV status and experience stigma and discrimination in the communities that they live in.

Access (finding the time to attend a support group)
HIV-positive adolescents can have complex lives, with regular visits to clinics and hospitals to pick up their medication and check-ups, along with attending school and fulfilling responsibilities at home.

Social Isolation (finding support groups tailored to adolescents)
If they are lucky enough to have access to support groups at their clinic or hospital, the groups tend to cover a wide age range, making it challenging to bring up age-appropriate topics.

Funds (having the necessary funds such as transport costs available to attend)

 

Details of the Khuluma model

  • There is a maximum of 15 people per support group
  • The support groups run for a period of three months, each day, after school hours
  • The facilitator brings up a ‘topic of the day’ to generate a conversation within the groups
  • Guest speakers are also invited to run facilitated discussions on specific topics such as nutrition, education, careers advice or sexual health
  • 40 000 unique messages were sent, with an average of 6 SMS’s a day per participant

 

An extract from an SMS conversation:

  • Facilitator:  If you are HIV positive and you have sex with someone who is also positive do you still need to use protection - like a condom?
  • Participant one: I dnt knw.
  • Participant two:  No he is negative
  • Facilitator:  Even if both partners are HIV positive they can still be infected with slightly different strains of the virus.  So always use a condom.
  • Participant two:  That is new.

 

Key drivers

Network of Partners
Well established relationships with clinicians and other health professionals working in the area of pediatrics and HIV in clinics we work in. Given the project team’s extensive networks with universities in South Africa, namely the University of Pretoria and the University of Cape Town, it has been possible to recruit volunteers who have the required skills and abilities.

Participant-Led Approach
Involving the participants in the design process of the project helped determine how the model would work for them and where it could go next.

Data-Driven Approach
Analyzing text message data helped improve data available on mental health and chronic illness.

 

Challenges

Human Resources
The model is based on training up a large number of volunteers, who require training and are part of the project for short periods of time. Networks will have to be tested further to ensure this recruitment model is sustainable.

Relying on a Technological Platform
The technological platform is currently SMS based. In the future, as part of the project scale up, the right technology partner will need to be found and a new technology platform will need to be built that can not only use SMS but also mobile data, and allows the project team to moderate and monitor a large number of support groups at the same time.

Links to the Health System
It is crucial to augment the project’s position within the broader mental health and chronic illness management systems such that the participants are funneled in the right direction, equipped with adequate resources for their needs and informed with updated information. For example, the pilot has shown that participants with severe mental health disorders need a different kind of support to the Khuluma model. The project team had to leverage their experience and networks to find the right groups to meet the needs of these kinds of participants.

 

Continuation

There are several directions in which the team anticipates scaling up this innovation. First, we seek to reach out to an increased number of participants (approx. 14,000) across South Africa and to scale up to thousands of participants, dependent on the development of new technology. In addition, the team has developed a training tool with the aim of training up mentors who can take part in the groups:  www.mykhuluma.org.

Going forward, we also seek to scale into other populations in the developing world. The Khuluma model is designed for those affected by chronic health conditions who are at high risk of mental illness because of social stigma and social isolation associated with their condition. This model was originally developed in Mexico by the SHM Foundation under the name of Project Zumbido, which provided support groups for those living with and affected by HIV who were experiencing very high levels of social isolation. Since then, initiatives have been run with HIV positive parents (with Body & Soul in the UK), HIV positive pregnant women in South Africa and currently with new mothers in Guatemala. We seek to extend this model to others who meet these criteria, including, for example, individuals with Ebola, Epilepsy, Zika Virus, gynaecological cancers, and infertility and stillbirth.

 

Partners

 

Evaluation methods

Evaluation of the project uses a mixed qualitative-quantitative approach with psychological assessment tools to measure:

  • general wellbeing
  • perceived levels of internalized social stigma14
  • perceived levels of social support12 and social isolation
  • self-reported treatment adherence

Participants, facilitators and medics are engaged in each of these evaluative components at strategic points in the life cycle of the support group.  Specifically, a short 20-25 minute survey delivered at the beginning and end of the project gathers data on general wellbeing, adherence, psychological distress and social isolation of participants. Participants also complete an evaluative working group after the support groups have finished, where qualitative research methods and creative activities empower participants and facilitators respectively to reflect on the process and express their thoughts.

The project will also include in-depth interviews and biomedical reporting to test adherence to this evaluation process, which will be added at a later date. 

 

Cost of implementation

To date, the cost has come to only £82/$125 USD per participant per session. A more comprehensive cost analysis is currently underway. 

 

Impact details

Social support
Having access to social support can help to mitigate against depression and remains a vital component of HIV treatment and care.9-11 An analysis of the pre- and post-Khuluma questionnaires showed that there was a significant increase in feelings of social support amongst participants. On a scale12 of 0-60, where 60 indicates high levels of perceived social support, scores increased by 4.4 points. This is an increase of 33%. The large majority of the 40,000 SMSs that were sent amongst the participants were in relation to social support, demonstrating a huge need that the adolescents had to have more support.

Understanding their illness
Khuluma provided a platform for the adolescents to receive accurate information about HIV and to correct misunderstandings that they may have had. There were low levels of basic understanding of HIV and transmission, which was somewhat surprising given that they were HIV positive and were more likely to be in touch with health professionals than the average adolescent. There was little understanding of opportunistic infections such as pneumococcal disease or TB.

Reduced internalized social stigma
Stigma is closely linked to mental health problems such as anxiety and depression, and is a major barrier to disclosure. Reduction of feelings of stigma can help to facilitate access to improved care and support.13 Amongst the Khuluma participants, at least 2/3 of the adolescents indicated that beyond their healthcare providers and immediate care-givers, they had not disclosed their HIV status. However, analysis of the pre- and post-Khuluma questionnaires showed reduced internalized stigma. On a scale14 from 0 to 7, with 0 indicating extremely low and 7 indicating extremely high levels of internalized stigma, scores decreased by one point over the 3 month support group period, an decrease of 10%

Treatment adherence
Adherence is seen to be particularly problematic among adolescents living with HIV. Poor adherence can lead to an increase in viral resistance and severe opportunistic infections. It has been shown that mobile phone text messaging approximately doubles the odds of medication adherence for patients with chronic illness.15 Throughout Khuluma, participants opened up and admitted at times they did not take their medication or missed a dose for a range of practical and emotional reasons.  Participants used various arguments with their peers to encourage adherence, and sent each other direct messages such as: “hi guys did u take u pills” and “You must take it every day”.

 

References

  1. South Africa HIV and AIDS statistics. Available at: http://www.avert.org/south-africa-hiv-aids-statistics.htm [Accessed 30 May 2014].
  2. Jack H et al. (2014) Closing the mental health treatment gap in South Africa:  a review of costs and cost-effectiveness. Global Health Action, 7.
  3. Norman R et al. (2006) Revised burden of disease estimates for the comparative risk factor assessment, South Africa 2000. Cape Town: Medical Research Council.
  4. Mayosi BM et al (2012) Health in South Africa: changes and challenges since 2009.  Lancet, 380: 2029-2043.
  5. Lam PK et al. (2007) Social support and disclosure as predictors of mental health in HIV-positive youth. AIDS Patient Care STDS, 21(1): 20-29.
  6. Brown LK et al. (2000) Children and adolescents living with HIV and AIDS: a review.  J Child Psychol Psychiatry, 41: 81-96.
  7. Campbell C et al. (2005) ‘I Have an Evil Child at My House’: Stigma and HIV/AIDS Management in a South African Community. Am J Public Health 95, 808-815.
  8. Cook JA et al. (2002) Effects of depressive symptoms and mental health quality of life on use of highly active antiretroviral therapy among HIV- seropositive women.  Journal of Acquired Immune Deficiency Syndromes 30: 401-409.
  9. Gonzalez JS et al. (2011) Depression and HIV/AIDS Treatment Nonadherence: A Review and Meta-analysis. Journal of Acquired Immune Deficiency Syndromes, 58(2).
  10. Johnson MO et al. (2012) Primary Relationships, HIV Treatment Adherence, and Virologic Control. AIDS and behavior, 16(6): 1511–1521.
  11. Tsai AC et al. (2012) Food insecurity, depression and the modifying role of social support among people living with HIV/AIDS in rural Uganda. Social Science & Medicine, 74(12).
  12. Perceived levels of social support were measured using the Multidimensional Measure of Perceived Social Support (MMPSS). This measure uses a Likert-scale response format. Scores range from 12-60, with 12 indicating extremely low levels of perceived social support and 60 indicating high levels of perceived social support.
  13. SANAC (2015) The People Living With HIV Stigma Index: South Africa 2014. Available at: http://www.sanac.org.za/resources/cat_ view/7-publications/9-reports [Accessed 08 July 2015].
  14. Internalized Stigma was measured using a revised version of the Berger Stigma Scale. Participants were asked to either agree, disagree or indicate a neutral opinion on a series of statements. Possible scores range from 0 to 7, with 0 indicating extremely low levels of internalized stigma and 7 indicating extremely high levels of internalized stigma.
  15. Thakkar J et al. (2016) Mobile Telephone Text Messaging for Medication Adherence in Chronic Disease: A Meta-analysis. JAMA Intern Med, 176(3): 340-349.

 

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What a fascinating project which shows the power of technology for young people.
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