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Training family caregivers with health skills to improve outcomes for newborns. [Updated Jan 6]

New parents in resource constrained environments return home after childbirth in a hospital or clinic with very little or no health information about best practices of infant care. Pop-up classrooms inside of the hospital, where family members receive hands-on training and certification from a nurse before they return home, could set both the parents and newborn up for success in their early years. Our model would provide new moms and dads with necessary skills to care for their newborns in the hospital and at home – training them in everything from clean breastfeeding to nutrition, pneumonia and infection detection/control. We would convert hospitals and clinics into training grounds for new parents, building health capacity in families.

Photo of Edith Elliott
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[Jan 6, 2015]
We just completed a round of user feedback collection/testing with new parents in both rural, urban and peri-urban regions.  We came out with even more validation that new parents are an extroardinary front-line resource that, when leveraged, can make a tremendous impact on the health of their families.    

“We are very far from the hospital. Knowing how to recognize emergencies early and acting fast is their only chance of survival out here. Thank you for helping keep us safe.”
     -Ayaan, father, son, and proud silk farmer


Ayaan is a, small-scale silk farmer in rural Karnataka. He went through our training program after both his elderly mother and young child were both diagnosed and operated on for congenital heart defects only a month apart from each other.  Ayaan, and other parents like him, have expressed that he wished he and his wife had had access to informaition in this way when their child was born. The baby was "fussy" from the time of birth and Ayaan, his wife, the aunts, and grandparents tried everything they could think of to keep the baby happy--- but nothing was working. They tried the local remedies, but the baby just seemed to be getting worse. For over a year, they didn't realize that the signs they were seeing were from congenital heart defects and that the baby was in fact not just "fussy", but struggling to survive. By the time they decided to take her to the hospital to see if the issue was medical, she wasn't able to sleep, eat or stop crying --- if they had waited any longer, the doctor said she probably wouldn't have survived. If Ayaan and his wife had gone through training when they had first given birth, they would have been able to spot the atypical sypmtoms much earlier, and had a phone number in their pocket to call with questions. They found the prototype calls that we made to them with health information and questions to be incredibly useful. It also gave them a feeling of being increasingly proactive about their health as a family; and gave them a sense of comfort that they had some knowledge and knew how to access more about their child's condition.
















[Updated Jan 6] Above, we are prototyping different types of videos on a tablet to teach parents about hygiene practices for their infant. We tested different ways of showing them videos, on tablets whenever they wanted to watch it, tv in a classroom and laptops wherever they wanted. Tablets worked the best for the families because they could set it up at the bedside, while their infant rested, and watch the videos as a family and discuss them, while providing minimal distraction and the least amount of technophobic fear with no buttons.  While the video was playing there was a lot of interaction between family members as they shared the parts of the information that were surprising, obvious, or that they admittedly needed to get better about. Since the entire family unit would participate during the tablet bed-side views, we think this is the most like to lead to behaviour change because: 1) The families could interact with the video content by discussing it with eachother in real-time without being concerned about disturbing other families (like in TV classroom session) 2) The family members could make commitments to change certain practices about their healthy habits 3) They could actively agree to support eachother and hold eachother accountable for practicing these skills at home.

We also tested different types of audiovisual styles including cartoons, live demonstrations, health dramas, and pictures with audio narration. The most effective method, both in terms of recall of medical details and delight, was the health dramas. That is why we are biasing towards using Bollywood-style family dramas that have health information embedded in them to teach this content. The version of the videos that we made for heart surgery recovery has been so enjoyed that people are buying the DVDs to take home and rewatch.

During our prototyping in the refinement phase, we have found that families are engaged in the hospital, then become highly activated when they return home, continuing to use the materials we send home and being very engaged with the voice messages we have tested (98% completed listening rate!).  Over the coming weeks, we hope to continue prototyping with new parents at a public hospital facility.  

Worldwide, family caregivers face enormous hurdles in providing physical, emotional, and social support to their loved ones. This is particularly acute for new parents in resource constrained settings with little access to medical care or information. New parents stay in the acute-care environment of a hospital only for a limited period of time after which they return home. In India, it is very common for new parents to be in settings where access to health informaiton is minimal. 

The knowledge and information needed to prevent the most common causes impacting children under five is relatively simple. Parents, in general, are highly motivated to do whatever they can in order to improve the health of a newborn. Unfortunately, while doing initial needsfinding with rural farming families in India, the information that most parents act on is generationally passed down wisdom from "the elders"--- which is often incorrect. By providing hands-on medical training by respected medical professionals, we have the opportunity to replace this sketchy information with "best in practice" knowledge and skills that are shown to improve outcomes. We create this trianing environment by turning maternal wards and waiting rooms into classrooms for family members that have a newborn.  We would take complicated medical content and make it accessible by turning it into drama-based videos that can be easily translated into multiple languages, require no literacy level, are entertaining to watch and require no previous medical knowledge or understanding.  

The educational program does not end in the “classroom,” rather it becomes part of the culture of the hospital/clinic and Noora Health advises on how to best involve the newly trained caregivers in the hospital setting to improve the quality of care delivered to patients, and best prepare them for their discharge home. All content and materials are offered in the local and national languages appropriate for the population that uses the hospital. The patient and family members then return home with critical, health care knowledge and are able to act on that knowledge to keep themselves healthy and also share that knowledge with their community.  We continue the education into the home using interactive voice messages delivered at critical moments, to continue the support at home. 

Spending hundreds of hours in Indian hospitals talking to doctors, nurses, new parents and their families, we realized that the problem of the ‘anxious caregiver at home’ stems from lack of involvement of patients and families in their own care during the hospitalization period. Hospitals and clinics, while often chaotic, contain a high concentration of people facing similar health issues. Hospitals are also a place that has an incredible amount of institutional credibility and respect amongst marginalized communities. By training families at this time of acute change in their lives, in a credible institution, by members of a medical care team that are highly respected seems to be a perfect window for behaviour change and role shifting.

Educational materials used by hospitals are outdated, mundane, and incomplete, because hospitals can’t afford to hire their own educational, creative teams and lack the expertise even if they can afford to. Thus, many new parents go home without adequate knowledge and support. This alienation continues post-discharge and parents are left to themselves with no follow-ups from the hospital or any other support system available for the family outside of local familial knowledge, which is spotty at best.

The following is the user experience map that will give you a better idea of the process:

 

Who will benefit from this idea and where are they located?

India has the highest number of newborn deaths in the world. As we know, data indicates that three million maternal and newborn deaths and/or stillbirths could be prevented annually with proven, effective interventions such as breastfeeding promotion, neonatal resuscitation, kangaroo mother care for preterm babies, and the prevention and treatment of infections. We target those new parents living on less than $1-4 USD per day.

How could you test this idea in a quick and low-cost way right now?

1. Test hands-on training with batches on new parents and a nurse educator that already teaches some of these skills on one-off basis. Are new parents interested in being certified before they leave the hospital or would this be something that they would want to return to the hospital for after they are better rested, for example, a week after childbirth. 2. Use pre-existing health educational videos or rapidly prototyped videos to test the visual styles that may be best suited to teaching new parents. For training adult caregivers, we found that family-dramas were the best way of conveying health information in a memorable way, but would want to test a few different styles with this more light-hearted content. Videos are used to help demonstrate the skills, so it is important that they give the best chance of communicating the skill clearly. 3. We are currently conducting caregiver training for post surgical patients with open heart surgery in 16 hospital facilities in India and have the green light for a pilot in the largest government hospital in Bangalore. We have access to the maternal wards in each of these facilities and have already begun the needsfinding process. As mentioned, we have shown the efficacy of our approach with one patient set and are now ready to test it with new moms, dads and babies. We are able to deliver our current intervention at roughly $1 per person trained and we train on average 2 people per family.

What kind of help would you need to make your idea real?

We need new creative ideas for how to train new parents in a way that would be both delightful and effective. Our experience is with training family caregivers how to take care of a loved one after a major surgery. What are the major differences you can see in way that we train these different populations? Does anyone know of health clinics or hospital chains that are popular amongst marginalized populations for childbirth? Where can we find a high enough concentration of new parents that we could train? Certification has been an important incentive for caregivers to get trained in our other caregiver training programs, but how might that incentive be different for new parents? How could we turn the new parents that we certify in the hospital into spokespeople or low-level trainers when they return to their villages? We would want to balance the sharing of helpful information, with the potential issues of unleashing a local "expert" that is under-qualified. We have assembled a group of medical advisors with expertise in the maternal health space, however would be eager to add to that group. In addition, we need funding to prototype, test, and refine educational content for new parents in the hospital and IVR messages to reach them when they return home.

Is this an idea that you or your organization would like to take forward?

  • Yes. I am ready and interested in testing this idea and making it real in my community.
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User Experience Map of the process with and without the intervention.

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Photo of Diini Omar
Team

This is great idea every family members need to provided care and support to each other during times of illness and anyone who is involve their care giving needs to have training for practices of infant care. The training classes in hospital will help the parents to get the skills and knowledge they need.

Photo of Edith Elliott
Team

Thank you for the feedback and support! What are some of the ways that you think family members can be most useful during these times?

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