Indigo funded project in eHealth is peer reviewed!

This time last year Indigo funded the SHM Foundation to scale up its Project Kopano initiative which creates SMS support groups for pregnant women recently diagnosed with HIV.

The SHM Foundation has recently celebrated the publication of pilot study findings in the peer-reviewed  Journal of Telemedicne and Telecare and we thought we would share with you all some of the insights gained from this review.

The pilot study followed a group of seven women using the SMS support group over 12 weeks. Each woman had been diagnosed HIV+ during their pregnancy and was given a cheap and discrete mobile phone to use for the duration of the project. South African provided a platform upon which messages sent to a prescribed number, via UK SMS software ZygoHUBS, would be delivered to all the phones thus creating a group thread of messages and replies. The support group also included one clinician and a local mentor who herself had undergone an HIV diagnosis during pregnancy. All the participants’ mobile numbers were kept anonymous.

During the 12 week period 1018 individual messages were sent.

In total 51% were medical related questions and conversations, often in the form of a query aimed directly at the clinician which received a prompt, precise and full answer. Myths about transmission were quashed, treatments explained and general pregnancy problems like nausea, fatigue and abdominal pains discussed.

One exchange went:

Participant: how is it possible that the baby is going to be negative whilst you are sharing the same blood for 9 months?

Clinician: The baby can be HIV- after in mom’s womb for 9 mo cuz baby & mom do not share blood. It is the VIRUS that can get from mom’s blood into baby’s blood

Participant: […] u said we a[re] not sharing blood w [th]e baby so how come [it is] still possible 2 have positive baby[…]?

Clinician: in the womb, mom and babys blood doesnt mix. But in the placenta blood flows side-by-side to pass food & air to baby so he can grow. Like food, HIV sumtimes crosses the placenta into babys blood. ARVs R good cuz they make less virus in mom’s blood.”

This exchange alone shows the great need for explanation. One other participant had refused ARVs, but through following this exchange and becoming more aware of how HIV prevention works she changed her mind.

The other 49% of messages related to what the study terms “psychosocial dialogue”. This included prayers, relationships, and really difficult issues like disclosure of HIV status, partner testing, reaction to their diagnosis and their relationships with staff at clinics. In these kinds of areas the value of a local mentor was clear; she was able to tell of her own experience in a way that spoke directly to the other members. It was in these kinds of conversations that the group members really interacted and got to know each other. Indeed their conversations resulted in some concrete outcomes. One participant convinced her partner to get tested, whilst another was withdrawn from the group because the clinician realised she was suffering from severe depression and needed a stronger form of intervention to help her get through her pregnancy and HIV diagnosis.

Full breakdown of content

Medical – 51%
HIV 32% – including ARVs, Safe feeding, CD4 count, delivery & safe sex
Pregnancy 19% – including pregnancy, specific problems & nutrition

Psychosocial dialogue – 49%
General 23% – including checking-in with the group, prayers & encouragement
Relationships 15% – including status disclosure, partner testing & discordant couples
Other 11% – including reaction to diagnosis & employment

One of the aims of the study was to help the participants in skill-building to cope with their situation. In this area the support group was least successful. The participants never responded to prompts from the clinician or the mentor to share how they coped with their condition or dealt with stress – it appears that this type of forum is not suitable for education in ‘soft’ or ‘life’ skills. The SMS group acted much better as a way of disseminating formal medical information and as a place where marginalised and often scared women could discuss intensely private issues in safety.

In reviewing the study some interesting conclusions came to light. The first concerned the mobile phones. All but one participant stated that the project dedicated mobile phone they received was vital because normally they shared mobile phones with friends and family. Without a dedicated and private mobile phone the safety of anonymity would be lost. Interestingly, the follow-up interviews were not well attended. The women reported feeling uncomfortable meeting each other in person despite the strong connections made through SMS. Moreover some found travel to the meetings difficult highlighting another advantage of using this kind of mobile system for providing emotional and medical support that this study, although small, suggests is highly needed.

The major problem – cost. The women used pre-paid phones which were topped-up by the charity because the group text system proved too expensive for the average individual. Here our hope must be that when scaled up, projects like this can enjoy economies of scale.

This small pilot study is worth celebrating. Although only working with a small group it demonstrates how a real difference can be made just by offering some empathy and some accurate and comprehensible information. It also demonstrates the effective use of mobile technology – despite distance these women were able to interact in a way that circumvented real fears about anonymity and confidentiality.

Indigo congratulates the SHM Foundation on its work and hope it continues to be ever-more successful!