Health

A New Study Reveals that Children with Cerebral Palsy have 25 Times Higher Risk Of Premature Death

Published

4 years ago

December 22, 2020

Child with Cerebral palsy with severe motor impairment in a wheel chair, occupational therapist is on his left and caregiver is on his right demonstrating to the therapist what the child is able to do with his right hand

The largest study on Cerebral palsy in Africa to date reveals that interventions to prevent malaria infections such as the use of insecticide-treated mosquito nets, coupled with caregiver training and support, including best feeding practices and simple measures to prevent other infections, could potentially reduce mortality in children with Cerebral palsy in this region. The study found out that the main causes of death were malaria and aneamia. The children with severe malnutrition and severe motor impairments were the most likely to die.

Cerebral palsy (CP) is a developmental disorder and the most common cause of childhood physical disability globally. CP is significantly more prevalent in low-income and middle-income countries like Uganda where the researchers noted a lower prevalence in the older (8-17 years) than younger (2-7 years) age groups as demonstrated in the findings of an earlier study conducted in 2015. https://www.thelancet.com/journals/langlo/article/PIIS2214-109X(17)30374-1/fulltext

The decline in prevalence of children with CP with increasing age in the 2015 study, led the researchers to hypothesize about the risk of premature death in these children.

In order to get a better understanding of the situation, a follow-up study was carried out at the Iganga-Mayuge Health and Demographic Surveillance Site (IM-HDSS) in eastern Uganda. Earlier in 2015, the researchers had screened 31,756 children and identified 97 (aged 2–17 years) who were diagnosed as having CP. The children with CP were followed up to 2019 and compared with an age-matched sample of the IM-HDSS general non-CP population (n=41, 319). The rates and causes of deaths in these groups were determined.

The research team found that the rate of death was 25 times higher in the CP group than the general non-CP population sample. The mean age at death among the CP group was 10•2±5•9 years and 7•2±4•8 years among the general non-CP population sample. In the CP group, females and older children (10-18 years) had higher relative risks of death in relation to the non-CP general population. Significantly, in children with CP, there was an almost 7 times risk of death in those with severe motor impairments compared to those with milder ones. In addition, those with severe malnutrition had a more than 3 times higher risk of death than children without severe malnutrition. The causes of death were from common conditions like anemia, malaria and common infections.

The results of this study, are the first of its kind to reveal the true extent of the hidden humanitarian crisis of excessive mortality in the CP child population. Severe malnutrition as one of the risk factors of excessive mortality plays a dynamic multifaceted role, partly aggravated by severe oral motor impairments which lead to chewing and swallowing problems, and the need for special foods and prolonged feeding times. Furthermore, the age pattern for mortality in children with CP confirms this study’s hypothesis with many dying when approaching school age, compared to the non-CP general population. The probable reasons for this may be attributed to caregivers eventually losing hope as these children grow older when they realize that their child will not be cured, or alternatively as a result of the minimal time provided to the child with increasing age (including during supervised feedings), which increases their vulnerability.

The higher mortality among the females may suggest a preferential treatment of boys with CP in Uganda which needs further study. Finally, regarding the causes of death, the frequent occurrence of anemia as a cause of death may signify the interplay of the conditions of underlying malaria infections and severe malnutrition in severely impaired children with feeding problems.

A multipronged approach including raising awareness about this challenge should be emphasized locally and internationally to promote the development of appropriate health and advocacy policies. Although efforts to reduce child mortality are quite evident in the recent decades, targeted interventions to reduce mortality in the CP child population, such as the use of insecticide-treated mosquito nets to prevent malaria infections, provision of easy to use, locally available nutritious foods coupled with caregiver information and support should be encouraged. Reinforcement and regular review of the existing laws and policies related to their specific requirements should be enacted. In general, further research to identify long-term risk factors and immediate causes of death in children with developmental disabilities in the region is also urgently required

These findings are to be formally published in the journal ‘PLOS ONE’ and entitled: “Excessive premature mortality among children with cerebral palsy in rural Uganda: a longitudinal, population-based study”.

Publication

Excessive premature mortality among children with cerebral palsy in rural Uganda: A longitudinal, population-based study.

Namaganda LH, Almeida R, Kajungu D, Wabwire-Mangen F, Peterson S, Andrews C, et al
PLoS One 2020 ;15(12):e0243948

Related story by collaborators at Karolinska institute here:

https://news.ki.se/children-with-cerebral-palsy-in-rural-uganda-have-25-times-higher-risk-of-premature-death

This study was funded by the Swedish Research Council, and Promobilia.

Dr. Angelina Kakooza – Mwesige
Makerere University, College of Health Sciences
Kampala, UGANDA.
On behalf of the Researchers

Related Topics:health pediatrics Research

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ENABLING Project Social Scientist Positions: (1) Team Lead (3) Research Associates

Published

4 days ago

July 18, 2024

Mak Editor

An elevated shot of the School of Biomedical Sciences Building, College of Health Sciences (CHS), Makerere University. Kampala Uganda, East Africa

Makerere University College of Health Sciences-MAKCHS- Centre of Excellence in Women’s Health in collaboration with Makerere University-Johns Hopkins University (MU-JHU) Care Limited received funding from Bill and Melinda Gates Foundation; Enabling Platforms for Maternal Immunization: Uganda (ENABLING Project). The Project aims to identify, characterize, and support the delivery platform, policy, and preparedness requirements for introducing new maternal vaccines. The Project seeks to recruit suitable candidates for the following positions;

Social Scientist, Team Lead (01)

Social Scientist Research Associate (03)

Duty Station: Kampala

Engagement: Full Time

All applications must be submitted to the email: enablingproject71@gmail.com before Monday, 29th July 2024 at 23:59hrs EAT

ENABLING-PROJECT-JOB-OPPORTUNITIES-JULY-2024_BD_AS Download

Health

Call for Abstracts: Makerere Bioethics Conference 2024

Published

4 days ago

July 18, 2024

Mak Editor

Call For Abstracts: Makerere Bioethics Conference (MakBC 2024), 11th - 12th November 2024. Deadline: 15th August 2024. Hotel Africana, Kampala Uganda, East Africa.

The Centre for Bioethics under Makerere University Biomedical Research Centre (MakBRC) is delighted to announce the MAKERERE BIOETHICS CONFERENCE (MakBC 2024), scheduled to take place on 11^th and 12^th November 2024 at Hotel Africana, Kampala, Uganda. This year’s theme is ‘Contemporary Issues in Bioethics Practice,‘ and we invite researchers, practitioners, and students to submit their abstracts for presentation.

Thematic Areas:

Emerging Technologies in Health
- Genetics and Genomics
- Assisted Reproductive Health
- Drug and Vaccination Development
- Nanotechnology
- Robotic Surgery
Data Science
- Artificial Intelligence and Machine Learning
- Biotechnology
- Big Data
- Digital Health
Research Ethics
- Research Ethics
- Research Integrity
Clinical Ethics
Public Health Ethics

Important Dates:

Abstract Submission Deadline: 15^th August 2024

Registration Deadline: 16^th September 2024

Submission and Registration:

Abstract Submission: Click here to Submit your Abstract

Online Registration: Click here to Register for the Conference

For more information contact Conference Secretariat:

Department of Anatomy,
Last Floor, School of Biomedical Sciences
Makerere University College of Health Sciences,
P.O Box 7072 Kampala, Uganda.
Email: makbioethicsconference@gmail.com
Website: https://chs.mak.ac.ug/makbc2024
Tel: +256 782 363 996 or +256 772 246 681

Makerere-Bioethics-Conference-Call-for-Abstracts-Poster Download

Health

Mak Researchers Partner with Safe Bangle Technologies to Roll out a Real-Time Domestic Violence Reporting Bracelet

Published

5 days ago

July 17, 2024

Mak Editor

A Woman putting on the Real-Time Domestic Violence Reporting Bracelet. Makerere University School of Public Health/Resilient Africa Network (MakSPH/RAN), Medical College of Wisconsin (MCW), Somero Uganda, Safe Bangle Technologies roll out of a real-time domestic violence reporting bracelet. Kampala Uganda, East Africa.

_{By Joseph Odoi}

A Consortium of Researchers from Makerere University School of Public Health/Resilient Africa Network (MakSPH/RAN), Medical College of Wisconsin (MCW), Somero Uganda together with Safe Bangle Technologies have rolled out a real time domestic violence reporting bracelet.

This roll out was made possible with support from the United States Agency for International Development (USAID) under the PARTNERSHIPS FOR ENHANCED ENGAGEMENT IN RESEARCH (PEER) program and the National Academies of Sciences.

Dr. Juliet Kiguli, the Principal Investigator from Makerere University, along with Dr. Roy Mayega, Deputy Chief of Party at RAN, and Dr. Agnes Nyabigambo, the study coordinator, initiated the PEER program to identify entry points for testing SafeBangle Technologies (a social enterprise based at Resilient Africa Network (RAN) with a mission to create a safer and more secure environment for women and children through innovative, affordable, and creative technology solutions to curb GBV in Africa.) wearable safety bracelet in the informal settlements. This decision stemmed from findings of increased intimate partner violence (IPV) and gender-based violence (GBV) in three informal settlements in Kampala, Uganda, following a longitudinal study, geospatial mapping, and interviews. The project, titled ‘The Impact of the COVID-19 Pandemic on Gender-Based Violence among Women and Girls in Informal Settlements in Kampala,’ highlighted the urgent need for affordable and immediate reporting mechanisms for violence.”

‘’While carrying out a study after the Covid-19 Pandemic, we identified gaps when it comes to reporting and response to Gender Based Violence (GBV) among women in informal settlements. Therefore, we used incorporated the SafeBangle intervention to solve the problem of lack of affordable and immediate reporting mechanisms for violence using a bracelet that reports violence in real time’’ explained Dr. Kiguli.

Innovation details

According to Saul Kabali and Messach Luminsa, the innovators behind SafeBangle from SafeBangle Technologies, hosted at the Resilient African Network Lab. ‘’The inspiration behind SafeBangle came from a deeply personal place. ‘’We heard countless stories of women who couldn’t call for help during moments of danger. We were deeply affected by the story of Aisha, a young woman in a rural village who was attacked while walking home alone at night. With no way to call for help, she felt helpless and vulnerable. This incident made us realize the critical need for immediate reporting alert tools, accessible to women like Aisha. We knew technology could play a crucial role and this incident awakened a strong desire in us to create a solution’’

Saul Kabali, Executive Director and Chief Operations Lead at SafeBangle Technologies explaining how the bracelet works at 2023 Imara Girls Festival exhibition. Makerere University School of Public Health/Resilient Africa Network (MakSPH/RAN), Medical College of Wisconsin (MCW), Somero Uganda, Safe Bangle Technologies roll out of a real-time domestic violence reporting bracelet. Kampala Uganda, East Africa. — *Saul Kabali, Executive Director and Chief Operations Lead at SafeBangle Technologies explaining how the bracelet works at 2023 Imara Girls Festival exhibition.*

“While developing SafeBangle, we tested with the users in both rural and urban contexts. We piloted the innovation around Kampala with support from Digital Human Righs Lab and Naguru Youth Health Network as well as it in five districts of Karamoja region with support from Save the Children and Response Innovation Lab. Right now it has become handy in Kamapala‘s informal settlements. We envision a future where SafeBangle becomes a standard tool in the fight against GBV, ensuring every woman feels safe and secure as it has the potential to transform how we respond to GBV in Africa” added Kabali.

HOW THE SAFEBANGLE TECHNOLOGY WORKS

The SafeBangle is wearable technology similar to a smartwatch that sends an alarm by SMS to people chosen by a woman herself if she feels threatened.

How the SafeBangle Real-time Domestic Violence Reporting Bracelet works. Makerere University School of Public Health/Resilient Africa Network (MakSPH/RAN), Medical College of Wisconsin (MCW), Somero Uganda, Safe Bangle Technologies roll out of a real-time domestic violence reporting bracelet. Kampala Uganda, East Africa. — *How the SafeBangle Real-time Domestic Violence Reporting Bracelet works.*

In terms of the acceptability of the SafeBangle innovation as a solution to GBV among at-risk women in informal settlements Of the 72 adolescent girls and women who received the SafeBangle, 22 activated the reporting button, resulting in 19 receiving immediate and appropriate support, including counseling, police intervention, and health services.

All adolescent girls and women who experienced GBV received a phone call from Somero Uganda to discuss the most appropriate intervention, including counseling, police cases being handled by the probation office, referral for health services, and post-exposure prophylaxis. All the GBV survivors received support and are still receiving continuous follow-up.

Researchers conducted a survey among 644 girls and women in Kinawataka (Nakawa Division) and Bwaise (Kawempe Division) to gain insights into awareness and understanding of sexual and gender-based violence among adolescent girls and women in informal settlements. The survey measured socioeconomic factors, mental health symptoms, and exposure to GBV. Focus group interviews were conducted with a separate sample of women over 18 in the settlements to explore responses to GBV.

Preliminary impact of SafeBangle on tracked survivors. Makerere University School of Public Health/Resilient Africa Network (MakSPH/RAN), Medical College of Wisconsin (MCW), Somero Uganda, Safe Bangle Technologies roll out of a real-time domestic violence reporting bracelet. Kampala Uganda, East Africa. — *Preliminary impact of SafeBangle on tracked survivors.*

A tabular representation of the key findings and lessons learned from your study on gender-based violence (GBV)

Key Findings	Lessons learned
Prevalence of GBV. – Overall prevalence: 34.1% of women and girls reported experiencing GBV. – Among adolescents (15-19 years): Over 50% reported experiencing GBV.	– The pandemic highlighted the need for accessible and comprehensive support services for GBV survivors. – Schools emerged as crucial safe spaces for girls, emphasizing their well-being during crises. – Economic independence proved crucial, enabling women to leave abusive environments. – Involving men and boys as allies in GBV prevention efforts is essential.
Age-related trends	– GBV prevalence tends to decrease with increasing age.

Physical and health consequences.	– Women and girls suffered physical violence, injuries, and deaths, primarily from domestic violence and unsafe abortions due to limited healthcare access. – GBV resulted in unintended pregnancies, unsafe abortions, and increased risk of sexually transmitted diseases (STIs) like HIV/AIDS.
Social and economic impact. .	– GBV contributed to family breakups, strained marriages due to financial stress. – Economic hardships forced some women and girls into transactional sex, exposing them to further health risks and exploitation. – Pandemic-related job losses and economic constraints increased financial dependence on abusers, trapping women in violent situations. – School closures and increased household responsibilities limited women’s job opportunities and subjected them to sexual harassment.
Psychological effects	– Survivors experienced guilt, shame, anxiety, fear, and suicidal thoughts due to ongoing abuse.
Long-term effects	– Post-COVID-19, survivors faced disrupted education, early marriages, pregnancies, social stigma, and persistent mental health issues.

A tabular representation of the key findings and lessons learned from your study on gender-based violence (GBV)

Reproductive Health Consequences: GBV resulted in unintended pregnancies, unsafe abortions, and increased risk of sexually transmitted diseases (STIs) like HIV/AIDS.

Family Breakdown: The rise in GBV led to family breakups as women fled abusive relationships. Marriages were strained due to increased financial stress.

Transactional Sex for Survival: Desperate for basic needs due to job losses and economic hardship, some women and girls resorted to transactional sex, exposing them to further health risks and exploitation.

One study participant stated, “The time of COVID-19 was so terrible for some of us. We in fact got a lot of diseases from it because you would want to get food and didn’t have money. That way you would be forced to get a man who would use you and pay.” – (FGD_Girls_19–24years_Kinawataka).

Economic Effects: COVID-19 restrictions caused job losses and limited economic opportunities, particularly for women in the informal sector. This increased financial dependence on abusers and trapped women in violent situations.

Limited Access to Employment: School closures and increased household chores limited women’s ability to seek employment, perpetuating gender inequality in the workforce. Some faced sexual harassment from potential employers.

Psychological Effects: Survivors of GBV experienced guilt, shame, anxiety, fear, and even suicidal thoughts due to the constant threat and unpredictability of abuse.

Post-COVID Effects: GBV survivors faced long-term consequences, including disrupted education, early marriage, early pregnancy, social stigma, and persistent mental health issues.

Lessons learned

The pandemic highlighted the need for accessible and comprehensive support services for survivors of GBV, the significance of schools as safe spaces for girls, and the need to prioritize their well-being during crises. Economic empowerment emerged as a significant protective factor for women and girls. Those with greater economic independence were better equipped to leave abusive environments and secure their safety and well-being, while dependent ones suffered abuses. Engaging men and boys as allies in the fight against GBV and involving them in prevention efforts can help promote positive behavior change and foster more equitable relationships.

Recommendations

To address GBV against women and girls, the researchers recommend the following moving forward;

There is need to integrate technology-driven solutions like SafeBangle into national GBV prevention and response strategies. SafeBangle can be a valuable tool for policymakers as cases of violence that would have gone unreported will be brought to light and the would-be victims will be able to get immediate help from trusted relatives and friends.
Provide economic opportunities and vocational training for women and girls to enhance their financial independence and reduce vulnerability to violence. There is therefore a need to introduce education and training programs that empower women and girls, by providing them with skills, resources, and opportunities to start their own ventures and to participate fully in community affairs.
Strengthen and enforce existing laws and policies related to GBV, including laws against domestic violence, child marriage, and sexual assault without discrimination be it for law enforcers, leaders, and employers where such cases were suffocated. Ensure that perpetrators are held accountable through swift and fair legal processes that have no room for corruption.
Establish and promote effective, accessible, and confidential reporting mechanisms for GBV incidents that provide confidence and can be trusted by survivors to enhance reporting of such incidences of GBV. Community Engagement and Involvement: Involve community leaders, religious leaders, and elders in discussions about GBV to promote gender equality, change social norms, and reinforce the message that violence against women and girls is unacceptable.
Launch extensive public awareness campaigns to challenge harmful gender norms, report cases of GBV, raise awareness about the consequences of GBV, and promote positive behaviors and attitudes towards women and girls.
Implement comprehensive sexuality education in schools and communities, educating young people about healthy relationships, consent, and reproductive rights to be able to make informed decisions about their own lives and well-being.
Engage men and boys as allies in the fight against GBV, encouraging them to challenge harmful masculinity norms and behaviors. This will help minimize GBV because mostly they are the perpetrators. Strengthening Support for Survivors: Provide ongoing support and follow-up services for survivors of GBV mostly counselling services to aid their recovery and facilitate their reintegration into society.
Provide ongoing support and follow-up services for survivors of GBV, mostly counseling services to aid their recovery and facilitate their reintegration into society.
Provide avenues to seek free or subsidized services by survivors of GBV medical services and legal processes by survivors of GBV to enhance reporting of GBV cases, access to medical care, counseling, legal support, and other essential services.
Encourage and support more research and innovations like SafeBangle to curb incidents of GBV.
A comprehensive and inclusive approach is required. The efforts should involve government institutions, civil society organizations, community leaders, and individuals working together to address the root causes and provide support to survivors.
Involve media in GBV prevention activities and for enhancing campaigns against GBV mostly on radio and TV.

MORE ABOUT THE STUDY

The core project team, included researchers at Makerere University School of Public Health (MakSPH), Medical College of Wisconsin (MCW) led by Prof. Julia Dickson-Gomez, SafeBangle Technologies, and Somero Uganda, a community-focused NGO, began the project by designing their research protocol and taking a CITI Program course on human subjects social/behavioral research. Team members also met with the Ministry of Gender, Labour, and Social Development (MGLSG) in support of the gender-based violence policy process, Ministry of Health and local government. They also established relationships with the Kampala Capital City Authority (KCCA) and Nakawa and Kawempe probation offices to support legal processes for the GBV survivors. SafeBangle Team also received an award from Defenders Protection Initiative.