1. THE AIDS SUPPORT ORGANIZATION
TASO
TASO Uganda (Ltd). P.O Box 10443, Kampala Tel: +256 414 532580/1, Fax +256 414 541288
Email: mail@tasouganda.org. Website: www.tasouganda.org
Nono Denis, Oroma Alan Denis, Grace Akello, PhD
International Nodding Disease Scientific Conference
July 28th and 29th 2015
Psychosocial support for Nodding Disease
patients: Current efforts by TASO in restoring
normality in Gulu District

2. Outline
i. Background: TASO’s psychosocial support
to Nodding Disease patients
i. Objectives
ii. Methods: Mixed Methods study
iii. Findings: Efforts in restoring normality
iv. Conclusion and recommendations

3. Background : TASO’s psychosocial support to
Nodding Disease patients
The little understood nodding syndrome has increased the care and disease
burden among many households in Gulu and Kitgum district.
In Gulu district, over 400 children, particularly in Odek Sub County are
currently affected with nodding disease syndrome.
In response, since 2010, TASO Gulu provides psychosocial services children
and households affected with this disease.
TASO’s support activities include education support, socio-economic
security, food security and nutrition, psychosocial support and child
protection.

4. Objective
To investigate the nature and importance of TASO’s psychosocial
support activities for children living with nodding syndrome.

5. Methods: Mixed Methods Study
Mixed methods were employed in documenting psychosocial support
activities for households with children living with nodding disease.
Assessment interviews were held with each selected household using a
Household Assessment Tool (HAT).
A total of 50 households were assessed. Further interviews were conducted
using child status index, OVC monitoring tool and medical treatment
summary form.
More importantly, community dialogue meetings were done with child
protection committee members and OVC caregivers in Odek Sub County.
15 OVCs (6 Males and 9 Females Cases of Nodding Disease) in Lamola
parish were supported, 9 OVCs (5 Males and 4 Females Cases of Nodding
Disease) in Binya parish, 13 OVCs (4 Males and 9 Females Cases of
Nodding Disease) in Lukwor and 11 OVCs (7 Males and 4 Females Cases of
Nodding Disease) were supported in Palaro parish. 243 OVCs were reached
in total in the Sub County.

6. Findings
• TASO interventions including food security and nutrition, care and
support, economic security and education support ensured well-being
of children and families with nodding syndrome.
• School visits conducted strengthened the children through building
their self-esteem, knowing their counselors, career guidance,
children rights and a window of opportunity for addressing
psychosocial issues with the OVC.
• Home visits provided support to the children because issues such as
the living environment, nutrition, child rights and communication were
addressed jointly with the OVC caregivers.

7. Findings C’td
• Orientation of caregivers in food security, nutrition and backyard-
gardening provided OVC households with improved skills in farming, crop
cultivation, planting, food security and nutrition.
• The provision of beddings/blankets enhanced OVC provided protection
from cold but also improved on shelter and care of the OVC. Provision of
safe water vessels improved hygiene and sanitation for water collection
and usage by the OVC.

8. TASO’s efforts in pictures

9. Using the Household Assessment Tool

10. Community engagement in decision making

11. Supporting other affected households

12. A Nodding child whose household was
supported

13. TASO
In sum, for chronic conditions like nodding syndrome, interventions
focussing on treatment, research to ascertain disease aetiology are just as
important as psychosocial care provided to the affected children and
households.
Whereas TASO’s efforts were commendable, the organisations’
interventions were limited to two years. We recommend that future
interventions will take into consideration sustainability aspects.
For instance affected households could be trained on management of
micronutrient deficiencies. Health workers will be trained on the
management of all components of the Integrated Management of Acute
Malnutrition (Supplementary Feeding Program, Outpatient Therapeutic Care
and Inpatient Therapeutic Care).
Conclusion