The state of Assam is located in the northeastern corner of India and has a population of 31 million people, of which 87% reside in rural areas. This state is home to countless vulnerable children, many of whom are born with disabilities that increase their likelihood of illness or death and decrease their ability to live a full and productive life as a contributing member of their community. Among this vulnerable population are newborns and children born with a cleft lip or cleft palate. These children face considerable challenges to their health and survival due to challenges in feeding and receiving necessary nutrients, as well as the stigma that they face in their communities, often limiting their ability to attend school and causing psychological difficulties.
In order to address this issue, a community outreach team was compiled to penetrate the most rural and hard to reach blocks and districts in Assam. The team consists of five staff members and 35 volunteer patient counselors who have formed trusting relationships with local leadership in order to work within the communities to identify children with clefts and provide education about the treatment and care possibilities at the Centre. Given the importance of reaching these children early enough to provide life-saving interventions, the most essential aspect of this outreach has been the trainings offered to the government’s cadre of community health workers, called Accredited Social Health Activists (ASHAs). The ASHAs receive education about how to identify newborns and children with cleft lip or palate and offer education and counseling about the abnormality, optimal feeding practices, and the ways that it can be treated. The ASHAs often know of many children in their villages that suffer from cleft lip or palate but did not know that treatment was available for this deformity. Armed with knowledge of the resources available at GC4 and empowered by the ability to better serve their communities, ASHAs then work to identify and refer the families to the local pre-screening camps which are held at the block level. At these screenings, newborns and children are assessed and then referred on to the Centre for a thorough screening with numerous specialties including pediatricians, surgeons, speech-language pathologists, and dentists to assess the level of treatment and care that they need.
Since this program began in May of 2011, the team has reached 114 blocks in 22 of the 27 districts of Assam. An incredible 11,393 ASHAs have received this early identification education and training, totaling over one third of all of the ASHAs in the state. One hundred and ten pre-screening camps have been held in the communities and 4,580 patients have been pre-screened. More than 2,100 safe surgeries have been conducted in the Guwahati Comprehensive Cleft Care Centre and 2,725 post-operative follow up visits have occurred. In addition, the District Outreach Follow Up and Speech Therapy program has reached 619 patients by bringing the program into several very distant districts of Assam. Considering the large amount of stigma surrounding cleft lip and palate, the lack of knowledge of appropriate treatment, and the inability for so many families in Assam to access the care that their child needs, the results of this effort to link the community and the facility are thus far are very encouraging.
The greatest lesson learned has been the importance of thinking creatively to effectively link the community and its existing resources to a full-service facility in order to reach a highly vulnerable population who would otherwise likely not receive the treatment and care needed to survive and thrive. Another lesson learned is that it is not enough to simply offer needed services, but mechanisms must also be in place to understand and overcome the numerous barriers that families are facing that may be preventing them from obtaining the care that their child needs. It has been a learning experience to witness the power of knowledge-sharing and education of community health workers and caregivers surrounding this disability that is often ignored due to the stigma that it carries and the previously-held belief that there was no accessible solution.
A program model such as this one could certainly be utilized to effectively identify and treat other birth defects, disabilities, injuries, or other non-communicable diseases in resource-limited settings. There are always new challenges to overcome as this is a learning process. The primary challenge is the tremendous backlog of children to care for and the communities, ASHAs, and families that the program has yet to reach. In addition, the program would like to work toward the earliest possible identification of newborns suffering from these malformations in order to provide essential care from the first days of life. It would be beneficial to work with hospitals and other facilities where births occur in order to educate and train their healthcare workers in the identification and referral for this population.
The main message that should be conveyed from the lessons learned through this program is that it is both possible and essential to utilize currently accessible resources to link communities and facilities in order to care for the most vulnerable newborns and children that might otherwise go unseen and untreated.
For more information about this activity, please view the brief video below:
Operation Smile Patient Care Programs from Improving Health Care on Vimeo.
Brief Video Highlighting Linkage Between Community and Facility in Assam, India