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How can we support those affected by Zika?

Hear from Dr Hannah Kuper and Professor Laura Rodrigues around the health and social support needs of those affected by the Zika outbreak.
Until we have a vaccine and effective therapeutics and effective mosquito control, all we can do is try to encourage women to take actions to reduce their risk. Now, I think the actions fall in two parts. One is pregnant women reducing their risk of being infected. And that’s essentially mosquito repellent, long-sleeved clothes, and nets on the windows. Slightly double-edged there, because I think women who try very much to protect themselves and fail and get infected might feel responsible, so it’s asking a lot of the pregnant women. But, of course, they need to be given the information, and they need to be able to do what they can.
And, of course, mosquito repellents are not cheap, so again, there’s issue of inequalities and some countries are opting to deliver mosquito repellents as part of their antenatal care for free.
The other action that women, the families, can do is consider seriously about whether they are in a position in which they can delay pregnancy until the situation is more under control. I think it’s appropriate to give women the choice, and, of course, I think women can choose. There are reasons why they might want to get pregnant now, and then they would invest in protection, or they might think it’s better to wait until the situation is under control, until the big epidemics are over. And for that to be of your choice, again, women need to have access to contraception. So again, this is a situation of equality, and health services should be able to provide access to contraception.
The other aspect is, of course, termination of pregnancy. And in fact, a lot of the impulse for legalisation of termination of pregnancy in Europe came after the congenital rubella syndrome was described. And I think there is a parallel here. And then the discussion is being open in many countries. In Brazil, the parliament is very divided about - termination of pregnancy is illegal, but parliament is very divided about it. It’s a very controversial issue. And there’s also an action being taken to the Supreme Court based on human rights to grant access to termination to all women at infection. Not at congenital malformation, but at infection, because that’s a much earlier termination.
And I think that’s an issue that is being discussed in all countries, and I think how much being illegal prevents women to having access is another issue. And even if countries where it’s legal, then there’s access to safe terminations or unsafe terminations. So I think there’s lots of issues where inequalities are important - inequalities between the countries, inequalities to access to contraception and safe abortion. There are two things that are important to remember. The first thing is that children with microcephaly or adults with any kinds of disabilities have rights. They have the right to education, they have the right to health care, they have the right to inclusion.
And so trying to cater for their needs is not us being nice or kind, but it’s actually a fundamental right, and will probably be helpful for communities as a whole and society as a whole. The second thing that’s important to remember is that the children who have microcephaly will likely have a range of quite profound disabilities. But it’s very likely that the children without microcephaly born to Zika-positive mothers are likely to be at higher risk of disabilities as well. So we see that with rubella, that children born to mothers who had rubella are more likely to have vision problems and hearing problems and so on. So we need to be very aware of that as these babies are growing up.
And so there might be a much wider group with disabilities from Zika who will have needs that have to be catered to going forward. There are really two types of support that the families and the children will need. The first is practical support. So often the families will be the main carers for these children, and they need to be best taught how to look after those children. So in terms of helping them develop in the best possible way, in feeding the child and communicating with the child and looking after the child. So that’s the kind of practical support. The second type of support that the families and also the children will need is psychosocial support.
So the carers may experience a lot of depression and stigma and anxiety and all sorts of worries about what the outlook is going to be for their baby and why it’s happened, and so those kinds of supports are also really important through professional support or through setting up parent groups and so on so that people can come together and help each other. So a lot can be done to help the babies with microcephaly and their families. And we have examples for other kinds of conditions where very effective strategies have been put in place.
So cerebral palsy is a condition not totally different to microcephaly where children can be profoundly disabled, and it can affect a range of different aspects of their functioning, so physical, intellectual, maybe even hearing and seeing. And that the parents are usually the main carer. And often there are very few services to help those children with cerebral palsy. There may be physiotherapy, but not much else. And so we’ve developed a parent-led package of care to help the parents best look after those children and to support each other.
So what we do is we bring together groups of about 10 parents and their children with cerebral palsy, and they meet once a month where they’re given training on a different aspect of care for that child. It can be quite practical - something like feeding or communicating with the child - or it can be more focused on different aspects of participation, like playing with the child or inclusion of the child in education. And so once a month, the families come together. There can be an expert, like a physiotherapist there, to give the training. And the parents get two types of things from it.
The one is practical support, and the second is emotional support through the bringing together of these parents. And even education simple things such as this is not your fault and it’s also not going to be cured is very important to the family, so that they can understand those things. So that’s been set up, but for cerebral palsy, and it’s now being used throughout the world. And it’s very effective in low- and middle-income countries, but there are all the kinds of strategies that can also be used. So Brazil and other countries in Latin America have got very good access to smartphones and the internet.
And in an Indian context, we’ve developed mobile phone apps about rehabilitation post-stroke to help the families be aware of the kinds of exercises that are needed as well as how to dress a person and feed and bathe when they have physical disabilities after stroke. And those kinds of things could also be developed to help support the families who are looking after babies with microcephaly.
A great deal of fear and uncertainty surrounds the Zika virus, and this is particularly true for those at the greatest risk of complications from the disease. What advice and support can we give to pregnant women or families who are planning to conceive? What about those families who have already been affected by microcephaly, congenital Zika syndrome, or related neurological conditions?
In the video Professor Laura Rodrigues highlights some of what can be said and done to guide family decision making in relation to pregnancy, while Dr Hannah Kuper makes the case for the varied support that must be made available to individuals with Zika-related disabilities.
How else do you think we can help individuals, their families, and wider communities affected by this outbreak?
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