A comprehensive overview of the gaps in the diagnosis, treatment, and care for children with developmental disabilities in Ghana
2018 Maternal, Newborn, and Child Health and Nutrition Conference, Accra Ghana
Authors: Kwame Sakyi, Ph.D., MSPH1,2; Prince Owusu, BSc, MPhil,1,; Leonie Akofio-Sowah, MSc1, Linda Vanotoo, MBChB, EMBA3,4
Center for Learning and Childhood Development-Ghana. AF 3190, Adenta Flats, Accra, Ghana. Email: ksakyi@oakland.edu ;
Oakland University, Department of Public and Environment Wellness, 433 Meadow Brook Rd, Rochester, MI 48309-4452.
PROMISE Ghana, Adabraka Otsokrikri Street. Email: linda.vanotoo@ghsmail.org
Ghana Health Services, Greater Accra Regional Office, Private Mail Bag, Ministries, Accra
ABSTRACT
Background: Little progress has been made in reducing developmental delays and tackling the needs of children with developmental disabilities in Ghana. About a quarter of Ghanaian children are developmentally delayed, according to the Multiple Indicator Cluster Survey. Children living with developmental disabilities (CLWDD) experience social exclusion, poorer health outcomes, and higher mortality than those who do not have these disabilities. To inform policy and interventions, we sought to identify the critical gaps in the diagnosis, treatment, and care for CLWDD.
Methods: Drawing on both quantitative and qualitative methods, 95 surveys and 17 semi-structured interviews were conducted with non-specialist health workers (nurses, midwives, medical officers) across five government hospitals in Accra, Ghana. Health workers’ knowledge on three developmental disabilities (cerebral palsy, attention deficit hyperactivity disorder (ADHD), autistic spectrum disorder) were evaluated. Four focus group discussions with 21 caregivers of CLWDD were organized to identify barriers to healthcare. Semi-structured interviews were conducted with 10 developmental delay specialists to determine challenges in providing specialized care for CLWDD.
Results: Based on standardized instruments, health workers demonstrated low knowledge of developmental delays overall (only 8% demonstrated adequate knowledge on the three developmental disorders assessed). Caregivers said that the primary mode of diagnosis was self-diagnosis, which was done by comparing their children’s developmental milestones to other children of the same age. Once diagnosed, caregivers with CLWDD experienced stigma within their families, community, and hospitals, including divorce, social exclusion, and health workers’ inability to provide care. Caregivers felt social pressure to kill or abandon children with cerebral palsy. Both caregivers and health workers indicated that they found it difficult to locate and connect CLWDD to resources, including specialized care. They further emphasized how limited coverage of specialized services by the National Health Insurance Scheme, like physiotherapy and limited community-based physiotherapy centers restricted access to essential care. Concerns were raised about the influence of pharmaceutical companies on the prescription practices of specialist providers.
Conclusion: The challenges CLWDD face are multidimensional and include family, community, health care and policy level barriers. Interventions to address these challenges should consist of activities to improve health workers’ knowledge, reduce stigma, develop a referral system, and change health policies to enable access to quality care.
Strategies to improve the developmental outcomes of children with developmental delays and disabilities in Ghana
Authors: Leonie Akofio-Sowah, MSC1, Prince Owusu, MPHIL1, Linda Vanotoo, MBChB, EMBA2, 3, Kwame S. Sakyi, MSPH, PhD1, 4
Center for Learning and Childhood Development-Ghana AF 3190, Adenta Flats, Accra, Ghana.
Email: naaleonie@gmail.com; pogyebi@gmail.com
PROMISE Ghana, Adabraka Otsokrikri Street.
Email: linda.vanotoo@ghsmail.org
Ghana Health Services, Greater Accra Regional Office, Private Mail Bag, Ministries, Accra.
Oakland University, Department of Public and Environment Wellness, 3101 Human Health Building, 433 Meadow Brook Rd, Rochester, MI 48309-4452.
Email: ksakyi@oakland.edu
3rd Disability Conference, Ghana, March 2018
ABSTRACT
Given concerns of social exclusion and poor health and educational outcomes, urgent calls have been made for timely and appropriate support services for children with developmental delays (CWDD) and their families. Yet, few studies exist to inform such services in Ghana. This study sought to identify long-term strategies to support families to care for children with cerebral palsy.
Seventeen in-depth interviews were conducted with non-specialist healthcare workers from five government hospitals in Accra and three focus group discussions with 17 caregivers of children with cerebral palsy and learning difficulties.
Participants recommended a package of interventions that cut across familial, community, health system and policy levels. They included: 1) support groups for fathers to enable them to become more involved in caring for affected children; 2) community-based physiotherapy centers to increase access to care; 3) specialized training programs for health workers and educators; 4) coverage of specialist services by the National Health Insurance Scheme; and 5) a referral system to help parents locate support services. They suggested that these efforts should be complemented by stigma reduction activities.
The results indicate that it will take multiple stakeholders and systemic institutional and social changes to adequately provide care to CWDD and their families.
Identification and care of developmental delays in children in the home and hospital setting
Authors: Prince Owusu, MPHIL1, Leonie Akofio-Sowah, MSC1, Linda Vanotoo, MBChB, EMBA2, 3, Kwame S. Sakyi, MSPH, PhD1, 4
Center for Learning and Childhood Development-Ghana AF 3190, Adenta Flats, Accra, Ghana.
PROMISE Ghana, Adabraka Otsokrikri Street.
Email: linda.vanotoo@ghsmail.org
Ghana Health Services, Greater Accra Regional Office, Private Mail Bag, Ministries, Accra.
Oakland University, Department of Public and Environment Wellness, 3101 Human Health Building, 433 Meadow Brook Rd, Rochester, MI 48309-4452.
Email: ksakyi@oakland.edu
3rd Disability Conference, Ghana, March 2018
ABSTRACT
Early detection of developmental delays could help obviate the incidence of disability in children. Few studies in sub-Saharan Africa have examined how caregivers identify developmental delays in their children and how health professionals respond when caregivers seek care. We conducted two focus group discussions with 12 caregivers with children with cerebral palsy and 17 in-depth interviews with health workers.
Most caregivers reported that they identified delays in their children within the first year. Despite frequent visits to hospitals, many reported that they recognized the delays not through health workers, but by comparing their children’ developmental milestones to other children of the same age. Symptoms that triggered health seeking included: unstable neck, poor movement, delayed speech, high temperature, convulsions, and being born “yellow” or jaundiced. Many caregivers felt social pressure to abandon their children because they were considered as “snake” or “river” children.
Caregivers and health workers’ narratives showed that when mothers seek care, their children were often diagnosed as being jaundiced, “warm blooded,” or having a “weak body”; they were commonly given antibiotics, admitted for prolonged periods, or referred to tertiary hospitals.
Our results indicate that health workers have to be equipped with the skills to identify developmental delays in children early.