Nakita Natala, MD
Nominated From: University of Michigan
Research Site: Ghana
Research Area: Global Mental Health
Primary Mentor: Cheryl Moyer
Catching Children Early in Lower-Middle Resourced Countries: Introducing a Screening tool linked to a brief psychosocial intervention for Developmental Disorders in Primary Care Settings at Komfo Anokye Teaching Hospital (KATH) in Kumasi, Ghana.
There are more than 93 million children living with moderate to severe disabilities world-wide according to UNICEF’s most recent data (1). It is estimated the majority of children living with disabilities live in low-middle resource nations and over 200 million children under 5 do not reach their developmental potential due to living in poverty, insufficient access to health care, poor nutrition and lack of infrastructure to provide the psychosocial supports children with disabilities need to maximize their functioning (2,3). Most of these 200 million plus children live in sub-Saharan Africa and South Asia (3). As a group children remain highly vulnerable and often fall victim to intergenerational cycles of poverty, inequity and violence. Studies have shown neuro-typical children growing up in poor resource settings are at higher risk for poor outcomes. Children with disabilities face an additional level of disadvantage when compared to their neuro-typical peers because of issues related to discrimination, higher rates of medical illness, economic stress associated with health care costs, and school failure. Children with intellectual disorders specifically are also estimated to have a 3-7 times higher prevalence of emotional and behavioral problems which demonstrates the high psychiatric needs of this population (4). Developmental disorders by definition start during pregnancy and progress into early childhood. Prevention and intervention can have a big impact on long term functioning and quality of life for these children. The window for prevention, identification and intervention for developmental disorders is critical and generally defined between zero to 5 years (2). One of the global challenges in improving outcomes, care and resources for families and their children with developmental disorders has been inconsistency in the way developmental disorders are defined and diagnosed across cultures and clinical studies. In lower and middle resource countries, identification and interventions for these children is further complicated by several factors which include but are not limited to: • Availability of practical and validated screening tools that can be used across cultural and social settings • Lack of experts available to confirm developmental delay/disorder diagnosis and subcategorize children into more specific developmental disorders (Autism, Learning Disorder, Hearing/Vision Impairment) using standardized psychological and medical assessments. Clarifying diagnosis can help individualize treatment. • Profound shortages of specialists and clinics designed to manage and treat children with developmental disorders. In higher income settings, children are treated by psychologists, psychiatrists, neurologists, developmental pediatricians, social workers, special education teachers, occupational, physical and speech therapists, teachers of the blind. As a lower-middle income nation located in sub-Saharan Africa, children in Ghana with developmental disorders confront all of the significant disparities described above. Birth complications, perinatal infections and malnutrition are among the leading known environmental risk factors for intellectual and developmental disabilities (5,6). Although Ghana has made improvements in addressing these risk factors, preterm birth complications, birth trauma and asphyxia and malnutrition remain among the top 10 reasons for death and thus continue to be problematic (7). As health care improves for infants with complications, the number of children living with disabilities will also likely increase, exacerbating an already major treatment gap. Psychiatrists, pediatricians and nearby community nurses associated with Komfo Anokye Teaching Hospital (KATH) in Kumasi, Ghana have all expressed significant concerns about the welfare of children with disabilities and their families. During a four-week elective at KATH in November 2017, providers shared examples of the profound cultural and institutional challenges they are facing caring for children with developmental disorders. Case examples were given highlighting the impact culture, religion and stigma have on a caregiver’s decision to bring a child into a medical setting for care. Several providers stated families often prefer to take children to prayer camps. Providers talked about how caregivers face rejection from their extended families for continuing to care for their children with disabilities because they are often viewed as being a disgrace. Caregivers and families with these beliefs have also been encouraged to kill these children who per local providers, remain at high risk for infanticide. KATH affiliated providers identified that culture informed stigma and limited access to tools and resources are major barriers to improving the care and outcomes for these children. This study seeks to set the groundwork for addressing the identified priority need for additional resources and tools to care for children with developmental disorders. There is no protocol in place for screening children at KATH for developmental delays or providing psychosocial interventions for caregivers of children falling behind to promote healthy attachment, growth and development. Providers have expressed a strong interest in developing a program to follow children with developmental disorders in a multidisciplinary clinic and recently established a psychiatry-pediatric workgroup to brainstorm how to expand supports for these children. There is no data available outlining how children with developmental disorders are being diagnosed, screened and treated currently within the KATH healthcare system. Obtaining systematic data on attitudes and current practices about among primary health care workers could help to inform how a specialty clinic for children with developmental disorders is organized and receives referrals. Specific trainings on developmental disorders for primary health care providers, use of screening tools and intervention based psychoeducation for caregivers could be used until specialty referral clinics are available and while they are building capacity . Creating standardized, cost effective and well validated screening tools for developmental disabilities combined with a brief intervention package (particularly for settings where ability to access skilled professionals and structured interventions is limited) in low and middle-income countries has been a challenge (8). Several studies have commented on the how primary care settings for children are well primed to screen children since they are structured to see children regularly for vaccination visits and checkups. There are several different evidence-based screening tools for provides and brief caregiver interventions for developmental disorders available on the internet; however, having to sift through massive amounts of information, limited access to internet, cost of certain measures and reality that most tools have been validated in high resource settings makes it difficult for providers and families to benefit from these online resources. The Ten Question Screen (TQS) for Childhood Disability is a free parent report screening tool used to assess disability in large populations in lower and middle-income countries (9). The tool has been used successfully by community workers to screen children ages 2-9 and assesses various developmental domains including cognition, movement and seizures, vision, hearing and behaviors. It has been found to have good reliability, minimal gender bias and sensitivities and specificities both >80% for severe disabilities (8,10). Its sensitivity for hearing and vision deficits is lower with accuracy increasing if the child has already been diagnosed when screening is completed (10). The TQS is noted to be culturally sensitive and easily understood by caregivers as questions focus on global abilities instead of behaviors that may be culturally unique (11). The TQS has been used in Ghana to estimate the prevalence of developmental disabilities. One study by Bornstein et al. (12) published in 2013 screened 3, 240 children and commented on odds of children in Ghana having specific developmental concerns compared to all countries. While there are several studies using the TQS for epidemiological data, there are no studies that examine how and if primary health care providers in Ghana are using this screen in their everyday practice. There are also no studies examining if brief intervention tools have been used in Ghana as a temporary replacement for the severe shortage of specialty services for children with developmental disorders. This multi- phase study seeks to determine current screening and management practices, provide supplemental training on developmental disorders and lastly to introduce the TQS and linked intervention package for care givers of children who screen positive for developmental disorders (combination will be referred to as TQS-I) into clinical practice in primary care settings. Specific Aims 1) Determine how developmental disabilities in children are being taught, defined, assessed and treated by primary health care providers associated with KATH (pediatricians, family physicians and community nurses in Kumasi area). Early surveys and interviews would aim to explore primary care provider opinions (feasibility, usefulness) about integrating a brief screening tool into their routine practice and using a structured intervention based package for children who screen positive to provide caregivers with tools to promote development. 2) Develop additional training on developmental disorders for primary health care providers working in 3 different KATH affiliated clinics. During this training, the widely used Ten Question Screen (TQS) for Childhood Disability ages 2-9 will be reviewed along with a brief intervention based package providers can give to caregivers of children who screen positive (screening tool plus intervention tools together referred to as TQS-I) 3) Pilot administration of the TQS-I at three KATH primary care settings. 4) Follow up 2-3 months after introducing the TQS-I to obtain feedback from providers about the TQS-I, frequency of use, impact on clinical practice and need for further training.
Developmental disorders are common in children living in low and middle income nations. While the causes, presentations and definitions vary based on cultural and location, all children with developmental disorders need special care and support to reach their potential. In Ghana, there are many children with developmental disorders but an infrastructure to identify and support these children is lacking. This study would explore current practices in screening, diagnosing and caring for these children with the hope of working towards improving quality of specialized care and outcomes for this especially vulnerable group. Ghana and KATH specifically are in the early stages of improving mental health care to address the severe mental health treatment gap. KATH is exploring opening specialty clinics to follow children and developmental disorders and disabilities. This study would lay the groundwork for how to start a hospital wide protocol to screen, identify, manage and refer children with developmental disorders to speciality clinics and programs.
- Dr. Gregory Dalack, Michigan Medicine, Department of Psychiatry, University of Michigan, USA
- Dr. Gordon Donnir, Department of Psychiatry at the Komfo Anokye Teaching Hospital, Ghana
- Dr. Katherine Gold, Michigan Medicine, Department of Family Medicine and Obstetrics and Gynecology, University of Michigan, USA
- Dr. Kwabena Kusi-Mensa, Department of Psychiatry at the Komfo Anokye Teaching Hospital, Ghana
- Dr. Sarah Mohiuddin, Michigan Medicine, Department of Psychiatry, University of Michigan, USA
- Dr. Cheryl Moyer, Michigan Medicine, Department of Learning Health Sciences and Obstetrics and Gynecology, University of Michigan, USA