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. 2019 Apr 30;8(1):30.
doi: 10.1186/s40249-019-0540-x.

Qualitative evaluation of the outcomes of care and treatment for children and adolescents with nodding syndrome and other epilepsies in Uganda

Catherine Abbo  1 , Amos Deogratius Mwaka  2 , Bernard Toliva Opar  3 , Richard Idro  4
Affiliations

Qualitative evaluation of the outcomes of care and treatment for children and adolescents with nodding syndrome and other epilepsies in Uganda

Catherine Abbo et al. Infect Dis Poverty. .

Abstract

Background: In 2012, the Ugandan Government declared an epidemic of Nodding Syndrome (NS) in the Northern districts of Gulu, Kitgum, Lamwo and Pader. Treatment guidelines were developed and NS treatment centres were established to provide symptomatic control and rehabilitation. However, a wide gap remained between the pre-defined care standards and the quality of routine care provided to those affected. This study is to qualitatively assess adherence to accepted clinical care standards for NS; identify gaps in the care of affected children and offer Clinical Support Supervision (CSS) to Primary Health Care (PHC) staff at the treatment centres; and identify psychosocial challenges faced by affected children and their caregivers.

Methods: This case study was carried out in the districts of Gulu, Kitgum, Lamwo and Pader in Uganda from September to December in 2015. Employing the 5-stage approach of Clinical Audit, data were collected through direct observations and interviews with PHC providers working in public and private-not-for-profit health facilities, as well as with caregivers and political leaders. The qualitative data was analysed using Seidel model of data processing.

Results: Clinical Audit and CSS revealed poor adherence to treatment guidelines. Many affected children had sub-optimal NS management resulting in poor seizure control and complications including severe burns. Root causes of these outcomes were frequent antiepileptic drugs stock outs, migration of health workers from their work stations and psychosocial issues. There was hardly any specialized multidisciplinary team (MDT) to provide for the complex rehabilitation needs of the patients and a task shifting model with inadequate support supervision was employed, leading to loss of skills learnt. Reported psychosocial and psychosexual issues associated with NS included early pregnancies, public display of sexual behaviours and child abuse.

Conclusions: Despite involvement of relevant MDT members in the development of multidisciplinary NS guidelines, multidisciplinary care was not implemented in practice. There is urgent need to review the NS clinical guidelines. Quarterly CSS and consistent anticonvulsant medication are needed at health facilities in affected communities. Implementation of the existing policies and programs to deal with the psychosocial and psychosexual issues that affect children with NS and other chronic conditions is needed.

Keywords: Clinical audit; Clinical support supervision; Epilepsy; Multi-disciplinary; Nodding syndrome; Uganda.

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Conflict of interest statement

Authors’ information

CA is a Senior Lecturer and a Child and Adolescent Psychiatrist in the Department of Psychiatry, School of Medicine, College of Health Sciences, Makerere, and University. ADM is a Senior Lecturer and a Social Medicine Specialist in the Department of Medicine, School of Medicine, College of Health Sciences, Makerere University; BO is a Commissioner, Ministry of Health, Uganda and RI is A Senior Lecturer and Pediatric Neurologist, Department of Pediatrics School of Medicine, College of Health Sciences, Makerere University.

Ethics approval and consent to participate

This paper arose from activities and information as part of a bigger operational research and implementation project on response to Nodding Syndrome epidemic in Northern Uganda under Ministry of Health and Makerere University, Kampala. Ethical approval was granted for the study by School of Medicine Research and Ethics Committee Approval number REC REF: 2012–139.

Consent for publication

There was no involvement of individual participant data in this paper. Therefore consent for publication is not applicable.

Competing interests

The authors declare that they have no competing interests.

Figures

Fig. 1
Fig. 1
Fishbone (Ishikawa) diagram to understand possible root causes for seizures getting out of control. Legend: We first identified the four main causes using 3Ps i.e. People, Policies and Procedure (the big arrows). Next, we brainstormed about the causes of the main causes (the small arrows). AED: Anti-Epileptic Drugs
See this image and copyright information in PMC

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