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

1.  Center for Learning and Childhood Development-Ghana. AF 3190, Adenta Flats, Accra, Ghana. Email: ksakyi@oakland.edu ;

2.  Oakland University, Department of Public and Environment Wellness, 433 Meadow Brook Rd, Rochester, MI 48309-4452.

3.  PROMISE Ghana, Adabraka Otsokrikri Street. Email: linda.vanotoo@ghsmail.org

4.  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.


 

Broken Relationships: Women’s account of men’s reaction to diagnosis of cerebral palsy in children

Authors: Kwame S. Sakyi, MSPH, PhD1, 2 Leonie Akofio-Sowah, MSC2, Prince Owusu, MPHIL2,
Linda Vanotoo, MBChB, EMBA3, 4

1. Oakland University, Department of Public and Environment Wellness, 3101 Human Health
Building, 433 Meadow Brook Rd, Rochester, MI 48309-4452. Email: ksakyi@oakland.edu (mailto:ksakyi@oakland.edu)

2. Center for Learning and Childhood Development-Ghana. AF 3190, Adenta Flats, Accra, Ghana. Email: ksakyi@oakland.edu (mailto:ksakyi@oakland.edu) 

3. PROMISE Ghana, Adabraka Otsokrikri Street. Email: linda.vanotoo@ghsmail.org (mailto:linda.vanotoo@ghsmail.org)

4. Ghana Health Services, Greater Accra Regional Office, Private Mail Bag, Ministries, Accra

Abstract

In Ghana, caregivers experience substantial financial and psychological difficulties when their children are diagnosed with cerebral palsy. These effects have largely been documented among women. How men relate to their partners when their children are diagnosed with a cerebral palsy has received less attention.

This study is a secondary data analysis of two focus group discussions with 12 affected mothers. Participants discussed how male partners treated women when their children were diagnosed with cerebral palsy.

Their stories show that fathers often experienced immense social pressure from their families to divorce their wives because the children were considered social taboos. Consequently, the majority of the women reported that they had been divorced from their partners, resulting in self-blame, anger, depression, and economic burden. Also, potential male partners break-up relationships with women once they know they have children with a disability. In non-divorced relationships, most participants said that many men do not know how to care for their affected children. Some however provided financial and emotional support.

he results show that a cerebral palsy diagnosis leads to broken relationships. Interventions to encourage male involvement in the care of children with cerebral palsy should be complemented with sensitization of their extended families.


Strategies to improve the developmental outcomes of children with developmental delays and disabilities in Ghana

AuthorsLeonie Akofio-Sowah, MSC1, Prince Owusu, MPHIL1, Linda Vanotoo, MBChB, EMBA2, 3, Kwame S. Sakyi, MSPH, PhD1, 4

  1. Center for Learning and Childhood Development-Ghana AF 3190, Adenta Flats, Accra, Ghana. naaleonie@gmail.compogyebi@gmail.com
  2. PROMISE Ghana, Adabraka Otsokrikri Street. linda.vanotoo@ghsmail.org
  3. Ghana Health Services, Greater Accra Regional Office, Private Mail Bag, Ministries, Accra.
  4. Oakland University, Department of Public and Environment Wellness, 3101 Human Health Building, 433 Meadow Brook Rd, Rochester, MI 48309-4452. 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.

he 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

  1. Center for Learning and Childhood Development-Ghana AF 3190, Adenta Flats, Accra, Ghana. Email: naaleonie@gmail.com;pogyebi@gmail.com
  2. PROMISE Ghana, Adabraka Otsokrikri Street. Email: linda.vanotoo@ghsmail.org
  3. Ghana Health Services, Greater Accra Regional Office, Private Mail Bag, Ministries, Accra.
  4. 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.

ost 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. 

ur results indicate that health workers have to be equipped with the skills to identify developmental delays in children early. 


Effect of having an antiretroviral therapy adherence monitor on CD4 cell count among pregnant women living with HIV in Ghana

Authors: Jennifer R. McCullough [1], Arfah Anjum [1], Vanessa R. Salmo [1], Prince O. Gyebi [2], Kwame S. Sakyi [1,2]

  1. Oakland University, School of Health Sciences, Department of Public and Environmental Wellness, 3101 Human Health Building, 433 Meadow Brook Rd, Rochester, MI 48309-4452; Email: ksakyi@oakland.edu
  2. Center for Learning and Childhood Development-Ghana, AF 3190, Adenta Flats, Accra, Ghana

Michigan Academy 2018 Conference; March 2018. 

ABSTRACT

Background: A key part of HIV care in Ghana is for newly diagnosed patients to attend at least two antiretroviral therapy (ART) adherence counseling sessions with an ART adherence monitor. Research is yet to evaluate the choice of a monitor  and the number of counseling sessions attended with a monitor on CD4 cell count. 

Methods: A retrospective cohort study of 135 pregnant women diagnosed with HIV in 2011-2013 was conducted using data from patients' medical records at Korle Bu Teaching Hospital, Ghana. The outcome was participants’ first post baseline CD4 cell count, categorized as high (≥ 350 cells/mm3 ) vs. low (<350 cells/mm3). 62% attended ≥ 2 counseling sessions with a monitor. 

Results: In a multivariate logistic model, the odds of having a high CD4 cell count was over three times higher among those who attended ≥ 2 counseling sessions with a monitor [Adjusted OR= 3.44; 95% CI: 1.10, 10.70; p-value = 0.03] compared to those who did not. The choice of an adherence monitor (partner vs. non-partner) was not associated with high CD4 cell count. 

Conclusion: Given the benefits of having an ART adherence monitor, efforts should focus on in increase the proportion of women attending ≥ 2 counseling sessions with a monitor.


Stigma experienced by mothers living with HIV with low birth weight babies 

Authors: Kwame S. Sakyi [1,3], Margaret Y. Lartey[2] ,  Prince O. Gyebi [3], Pamela J. Surkan [4]

  1. Assistant Professor, Oakland University, School of Health Sciences, Department of Public and Environmental Wellness, 3101 Human Health Building, 433 Meadow Brook Rd, Rochester, MI 48309-4452. Email: ksakyi@oakland.edu 
  2. Professor, Department of Medicine & Therapeutics, University of Ghana School of Medicine & Dentistry, CHS, P.O. Box GP 4236, Accra, Ghana. Email: mlartey@ug.edu.gh 
  3. Co-Director, Center for Learning and Childhood Development Ghana, AF 3190, Adenta Flats, Accra, Ghana. Email:pogyebi@gmail.com
  4. Associate Professor, Department of International Health, Johns Hopkins Bloomberg School of Public Health, 615 N. Wolfe Street, Baltimore, MD, 21205, USA. Email: pamela.surkan@jhu.edu   

8th International Conference on Stigma, Howard University, Maryland, USA; Nov, 2017

ABSTRACT

Background: Low birthweight (LBW) infants are subject to both medical and social vulnerability, including stigma, as are people living with HIV. The impact of dual stigma (being HIV positive and having a small baby) has not been studied, especially in sub-Saharan Africa, where the burden of these conditions is highest.
 
Methods: We explored stigma related to baby’s size among 30 postpartum women living with HIV (15 with LBW (<2.5g) infants and 15 with normal birth weight infants) in Ghana. In semi-structured interviews, we asked mothers about their perceptions of LBW babies and social experiences living with HIV and caring for LBW infants. Data analysis was informed by interpretive phenomenology.
 
Results: Mothers’ narratives indicate that having a small baby was a source of stigma because of the newborns “undesirable” physical features and people’s unfamiliarity with their size. Many of the mother’s stories show that they and others characterized small babies as being abnormal or looking “animal-like.” This devalued identity, mothers reported, was the basis for several negative stigmatizing behaviors from society toward the mother-baby dyad, and also from the mother toward the infant. Key facets of the stigma participants report included initial maternal detachment, reluctance to show the baby to others, experiences of gossip and stares from others, and maternal self-blame. Participants described ways in which mental distress from HIV diagnosis contributed to having a small baby and how having a small baby was a reason for not disclosing HIV to partners or relatives.  
 
Conclusion: In Ghana, having a LBW baby is an attribute that invites stigma toward the mother-child dyad. Living with HIV compounds mental distress associated with having a LBW baby. HIV-infected mothers with very LBW infants may need additional support in disclosing their HIV status to their partners and relatives.


Current needs related to paediatric HIV in Ghana: Early identification, improved communication with parents and children are key to improving HIV care for children in Ghana

Author: Sarah Dalglish, PhD

1/20/2017

According to UN statistics, in Ghana there are at nearly 20,000 children aged 0 to 14 living with HIV as of 2015, with an additional 2,400 new paediatric infections each year. Recent studies suggest the most important steps for improving pediatric HIV care in Ghana are 1) promoting early identification of infection and early initiation of treatment and 2) better-quality counselling and communication with both parents and children.

First, only 11% of HIV-positive children in Ghana are currently receiving treatment despite the proven benefits of early initiation of anti-retroviral therapy (ART). A study of 90 HIV-infected children (age 0 to 13 years) starting ART at the paediatric HIV/AIDS care program in Accra, Ghana from 2009 to 2012 found the only significant predictor of treatment failure (as measured by reduced CD4 count) was older age at the start of ART, though effectiveness of first-line treatment was still found to be 83.3% (Barry et al. 2013).

A separate study using the IeDea paediatric West African Database included 3,014 HIV-infected children under age 17 and found that early initiation of ART (before 2 years and before any immunodeficiency) was necessary for the recovery of normal CD4+ cell counts, sustainable beyond 12 months of ART. Initiation of ART in children older than 5 years did not allow for reaching immune recovery (Desmonde et al. 2014). Similarly, late initiation of ART (after 5 years of age) was significantly associated with slower growth improvement (measured by height, weight and body mass index) in a study of HIV-positive children under 10 years from several West African countries including Ghana (Jesson, Leroy 2014). Thus, it is critical for Ghanaian practitioners and policy-makers to focus on identifying HIV in pregnant mothers (only 62% of HIV-positive pregnant women in Ghana receive the most effective ARVs for PMTCT), and in young children (ideally before their 2nd birthday), with immediate initiation of ART.

A number of case-finding strategies have been proposed for early infant identification, including provider-initiated testing, integrated management of childhood illness screening, and screening at immunization clinics, some of which may be more appropriate for relatively low-prevalence settings such as Ghana.

Equally important to early initiation of ART is sustained follow-up of HIV-positive children, with improved communication on proper care targeting both parents and HIV-infected children. Inadequate communication with care-takers about children’s health is a common problem in Ghana: in a study of 153 mothers of infants hospitalized at the Komfo Anokye Teaching Hospital Mother Baby Unit, less than one-third of mothers had a full understanding of the reasons for their baby’s hospitalization (Gold et al. 2013).

Furthermore, babies born to HIV-positive mothers may have special needs, as they are more likely to be born premature and with low-birthweight (Laar et al. 2010). Indeed a study observing HIV-infected children in five tertiary hospitals in West Africa (Ouagadougou, Accra, Cotonou, Dakar, and Bamako) over six months in 2010 found high rates of hospitalization; over half of these hospitalizations were due to infections caused by improper treatment (Dicko et al. 2014). The study’s authors recommend cotrimoxazole prophylaxis for all HIV-infected children; however improved counselling and support for adherence could also help. This is especially important given that early initiation of ART can lead to earlier cumulative toxicity, treatment failure or drug resistance if adherence is poor.

Even at early ages, children can become involved in caring for themselves and adhering to treatment – however a study of 71 parent-and-child pairs at the Pediatric HIV/AIDS Care Programme at the Korle Bu Teaching Hospital in Accra found out that only 1 out 5 parents had told their child s/he was HIV-positive, even though children who know their status are less likely to get sick than those who do not (Kallem et al. 2011). Practitioners in Ghana should take care to communicate the importance of proper adherence and the value of informing children of their HIV-positive status, whereas policymakers should consider how to best support these efforts, for example by providing counselling cards and similar tools.

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