Mitigating the cultural, social and organisational barriers for meeting the needs of patients with major limb loss (MLL) in Northern Uganda
Lead Research Organisation:
University of Manchester
Department Name: Arts Languages and Cultures
Abstract
As the world goes through one of the most turbulent periods in its recent history, the health, social & economic consequences associated with 'post-conflict disability' arising through major limb loss (MLL) has gained importance as a significant public health issue. Our preliminary observations and community engagement activities in two post-conflict societies - the Sub-Acholi Region in Northern Uganda and Northern/Eastern provinces in Sri Lanka, have demonstrated this to be an under-appreciated complex and multi-faceted problem characterised by:
a: Lack of suitable services capable of addressing the complex needs of the affected populations
b:Inability of the affected population to access the existing services due to poor transport links, poverty and ignorance.
c: Ad-hoc service development using non-sustainable funding sources at the time (or the immediate aftermath) of the conflict with inadequate characterisation of the needs of the local population.
d: Social-cultural factors and belief systems that adversely affect the day-to-day experiences of the victims and prevent their reintegration into the society.
Influencing and engaging with future policy making in this field therefore requires an integrated approach involving multi-disciplinary teams.
This proposal aims to bring together the 'Humanitarian and Conflict Response Institute (HCRI)' - an institution specialising in global health and 'In Place of War (IPOW)'- an organisation with expertise in conducting cultural programmes in post conflict settings, to focus on the multi-faceted problem of disability associated with MLL in two post-conflict societies - Uganda and Sri Lanka. The project will link HCRI and IPOW with Gulu Medical Faculty (GMF)-established specifically to address the health needs of Northern Uganda, the 'Gulu Referral Orthopaedic Workshop (GROW)' - the only centre providing prosthetic limb services in Gulu district in Northern Uganda, and 'Meththa Foundation UK' (MF)-a charity that pioneered prosthetic services in post-war Sri Lanka using recycled components from the UK and an innovative outreach model for service delivery. The involvement of Geographical Information Scientists (GIS) from University of Manchester (UOM), surgeons/public health officials from Northern Uganda and the Uganda-UK Health Alliance (UUHA) - the official intergovernmental body with a mandate to create sustainable partnerships between the two countries, will strengthen the proposed network. Research output from this network will:
a. Evaluate the impact of arts and social theatre in challenging entrenched cultural views and bias associated with MLL
b: Highlight the harm caused by ad-hoc service development in conflict environments
c: Provide the forum, pilot data, policy options and critical appraisals of delivery systems in low-middle income countries to deal with the rising tide of MLL cost-effectively
d: Fabricate and deliver 50 prosthetic limbs using an outreach service delivery model (successfully implemented in post-war Sri Lanka) and assess its suitability, acceptability and cost effectiveness in Northern Uganda.
The partnership will also create a quality assured environment where UK based professionals and students will be able to undertake short/long term volunteering and student placements with mutual benefits to both countries. The involvement of UUHA and Health Education England (HEE) as project partners creates a window of opportunity to champion the cause of disabled people in the region (and the UK) by influencing training, research, policy making and funding priorities. We submit that the policy documents, particularly those in relation to the feasibility/desirability of outreach prosthetic services in LMICs, will have wider applications in service planning in many other post-conflict societies in Asia, the Middle east, and Africa
a: Lack of suitable services capable of addressing the complex needs of the affected populations
b:Inability of the affected population to access the existing services due to poor transport links, poverty and ignorance.
c: Ad-hoc service development using non-sustainable funding sources at the time (or the immediate aftermath) of the conflict with inadequate characterisation of the needs of the local population.
d: Social-cultural factors and belief systems that adversely affect the day-to-day experiences of the victims and prevent their reintegration into the society.
Influencing and engaging with future policy making in this field therefore requires an integrated approach involving multi-disciplinary teams.
This proposal aims to bring together the 'Humanitarian and Conflict Response Institute (HCRI)' - an institution specialising in global health and 'In Place of War (IPOW)'- an organisation with expertise in conducting cultural programmes in post conflict settings, to focus on the multi-faceted problem of disability associated with MLL in two post-conflict societies - Uganda and Sri Lanka. The project will link HCRI and IPOW with Gulu Medical Faculty (GMF)-established specifically to address the health needs of Northern Uganda, the 'Gulu Referral Orthopaedic Workshop (GROW)' - the only centre providing prosthetic limb services in Gulu district in Northern Uganda, and 'Meththa Foundation UK' (MF)-a charity that pioneered prosthetic services in post-war Sri Lanka using recycled components from the UK and an innovative outreach model for service delivery. The involvement of Geographical Information Scientists (GIS) from University of Manchester (UOM), surgeons/public health officials from Northern Uganda and the Uganda-UK Health Alliance (UUHA) - the official intergovernmental body with a mandate to create sustainable partnerships between the two countries, will strengthen the proposed network. Research output from this network will:
a. Evaluate the impact of arts and social theatre in challenging entrenched cultural views and bias associated with MLL
b: Highlight the harm caused by ad-hoc service development in conflict environments
c: Provide the forum, pilot data, policy options and critical appraisals of delivery systems in low-middle income countries to deal with the rising tide of MLL cost-effectively
d: Fabricate and deliver 50 prosthetic limbs using an outreach service delivery model (successfully implemented in post-war Sri Lanka) and assess its suitability, acceptability and cost effectiveness in Northern Uganda.
The partnership will also create a quality assured environment where UK based professionals and students will be able to undertake short/long term volunteering and student placements with mutual benefits to both countries. The involvement of UUHA and Health Education England (HEE) as project partners creates a window of opportunity to champion the cause of disabled people in the region (and the UK) by influencing training, research, policy making and funding priorities. We submit that the policy documents, particularly those in relation to the feasibility/desirability of outreach prosthetic services in LMICs, will have wider applications in service planning in many other post-conflict societies in Asia, the Middle east, and Africa
Planned Impact
In the immediate aftermath of the Ugandan civil war in 2006, the first (and only) orthopaedic workshop in Northern Uganda was developed at the Gulu Referral Hospital with support from aid agencies. To date this centre, (Gulu Referral Orthopaedic Workshop: GROW)) remains the only facility capable of providing prosthetic limbs in this region. The work of GROW is largely supported by AVSI International and the 'Trust fund for Victims' and in its busiest years it saw 300 people/ year, with approximately 1,130 patients seen to date. However this support is now diminishing, leading to a reduction and sometimes cessation of services with a looming crisis. It was in this context that we have undertaken a series of scoping visits to the region to define the nature and extent of this problem and work towards sustainable solutions through innovation, training and capacity building. To date 6 such visits have taken place culminating in a very successful 4-day workshop and outreach visits in November 2016. It was clear through these interactions that:
1.Limb loss was a major cause for prolonged morbidity in Northern Uganda with social, cultural and economic consequences. The full extent of the problem is unknown with every amputee interviewed knowing 2-3 other patients who have not had access to services. As majority of victims are hidden away in remote villages, the size of the problem is hugely under-estimated. The proposed Health Needs Assessment (HNA) is essential in developing a sustainable service for these victims.
2.Cultural beliefs, taboos and negative social attitudes to disability have a considerable impact on the day-to-day experiences and life opportunities of disabled people in Northern Uganda. Theatre and arts have long provided a medium through which a group of people may reflect upon complex social issues and their resolution. The emotions evoked under carefully controlled environments have been harnessed successfully in post-conflict countries such as Sri Lanka and the Balkans, to achieve positive socio-cultural changes. We submit, that by empowering a wide range of local artists, frontline clinicians, patient groups and social scientists this proposal will trigger and sustain changes in societal attitudes to disability. This change will have immediate impact on life opportunities for disabled people in Northern Uganda and beyond.
3.There is an opportunity to establish a quality assured environment in one of the most deprived regions of the world. Such an environment would enable long/short term volunteering, student elective placements and field trials that would benefit the local population - a key vision of Uganda-UK Health alliance and Global Health Exchanges (HEE, UK). Linking the prosthetic facilities in Gulu and Sri Lanka into a single network with a rapid patient turnover will make these units an attractive venue for field trials, training (local and overseas) and other academic activities related to developing low-cost prosthetic technology. Such diversification of activities is essential for the long term sustainability/survival of these units in Uganda and Sri Lanka.
In addition to providing prosthetic limbs to a small cohort of patients (n=50), and thereby having a lasting and immediate impact on their lives, this partnership will seek to use the above project as a platform to also address the wider health & socio-political issues that stem from the current model of ad-hoc service development in post-conflict societies. We submit that the output from this project - particularly the systematic reviews and policy documents critically evaluating the use of mobile prosthetic services in LMICs, will have wider applications across Asia, Africa and the Middle East. The high-fidelity digital maps and data sets generated through the application of GIS technology will be invaluable in future service developments and field trials initiated by governmental and non-governmental agencies.
1.Limb loss was a major cause for prolonged morbidity in Northern Uganda with social, cultural and economic consequences. The full extent of the problem is unknown with every amputee interviewed knowing 2-3 other patients who have not had access to services. As majority of victims are hidden away in remote villages, the size of the problem is hugely under-estimated. The proposed Health Needs Assessment (HNA) is essential in developing a sustainable service for these victims.
2.Cultural beliefs, taboos and negative social attitudes to disability have a considerable impact on the day-to-day experiences and life opportunities of disabled people in Northern Uganda. Theatre and arts have long provided a medium through which a group of people may reflect upon complex social issues and their resolution. The emotions evoked under carefully controlled environments have been harnessed successfully in post-conflict countries such as Sri Lanka and the Balkans, to achieve positive socio-cultural changes. We submit, that by empowering a wide range of local artists, frontline clinicians, patient groups and social scientists this proposal will trigger and sustain changes in societal attitudes to disability. This change will have immediate impact on life opportunities for disabled people in Northern Uganda and beyond.
3.There is an opportunity to establish a quality assured environment in one of the most deprived regions of the world. Such an environment would enable long/short term volunteering, student elective placements and field trials that would benefit the local population - a key vision of Uganda-UK Health alliance and Global Health Exchanges (HEE, UK). Linking the prosthetic facilities in Gulu and Sri Lanka into a single network with a rapid patient turnover will make these units an attractive venue for field trials, training (local and overseas) and other academic activities related to developing low-cost prosthetic technology. Such diversification of activities is essential for the long term sustainability/survival of these units in Uganda and Sri Lanka.
In addition to providing prosthetic limbs to a small cohort of patients (n=50), and thereby having a lasting and immediate impact on their lives, this partnership will seek to use the above project as a platform to also address the wider health & socio-political issues that stem from the current model of ad-hoc service development in post-conflict societies. We submit that the output from this project - particularly the systematic reviews and policy documents critically evaluating the use of mobile prosthetic services in LMICs, will have wider applications across Asia, Africa and the Middle East. The high-fidelity digital maps and data sets generated through the application of GIS technology will be invaluable in future service developments and field trials initiated by governmental and non-governmental agencies.
Publications
Huck J
(2022)
Prevalence and Spatial Patterns of Major Limb Loss in the Acholi Sub-Region of Uganda
in Prosthesis
Huck J
(2020)
Centaur VGI: A Hybrid Human-Machine Approach to Address Global Inequalities in Map Coverage
in Annals of the American Association of Geographers
Liao M
(2021)
A technical review of face mask wearing in preventing respiratory COVID-19 transmission.
in Current opinion in colloid & interface science
Okello T
(2019)
Major limb loss (MLL): an overview of etiology, outcomes, experiences and challenges faced by amputees and service providers in the post-conflict period in Northern Uganda
in Journal of Global Health Reports
Tom Okello
(2019)
Major limb loss (MLL): an overview of etiology, outcomes, experiences and challenges faced by amputees and service providers in the post-conflict period in Northern Uganda.
in Journal of Global Health Reports
Yagos WO
(2022)
Use of mobile phones for rehabilitative services among prosthetics users in rural Acholi sub-region of northern Uganda: findings from a qualitative study.
in BMC medical informatics and decision making
Title | Short video movie on Post-conflict disability in Northern Uganda |
Description | This is a short (5 minutes) video highlighting post conflict disability in the region and the objectives of the current AHRC funded project. It is intended to be used for fund raising events, especially amongst the powerful Asian-Ugandan diaspora in the UK |
Type Of Art | Film/Video/Animation |
Year Produced | 2019 |
Impact | It is too early. We have finished production and editing in March 2019 |
URL | https://vimeo.com/320735816/af2cc77ecc |
Description | 1. We have discovered that the prevalence rate of patients who have lost a major limb in the Acholi-Sub Region In Northern Uganda is approximately 0.4%. This translates to approximately 11,000 victims. From clinic records at Gulu Referral Hospital we know that only about 2000 of them have received prosthetic limbs. This leaves a large residual disease burden that needs to be addressed. 2. We have also discovered that rural populations in Northern Uganda are very receptive to cultural interventions. If this translates to changes in attitudes is currently being studied |
Exploitation Route | We have created new resources (digital maps etc) for new researchers and donor agencies to access remote places in Norther Uganda |
Sectors | Healthcare Government Democracy and Justice Culture Heritage Museums and Collections |
URL | https://www.seed.manchester.ac.uk/about/stories/mapping-way-ugandas-mll-victims/ |
Description | 1. We have undertaken the first ever prevalence study of Major limb loss in Northern Uganda (8 districts). Data collection is now complete and is being analysed. We have determined the prevalence to be around 0.4% giving an overall disease burden of 6000-7000 victims. This data is to be published soon 2. An outreach clinic has been established and became operational in December 2018. 3. Community focused public engagement activities have been conducted in 3 rural communities in Northern Uganda engaging over 1000 villagers. Focus group evaluations were completed and are being analysed now. Local artists have been trained by theatre practitioners from the UK 4. 2 Prosthetic technicians from Uganda have been trained in Outreach services at Clinics in our partner organisation in Sri Lanka (Meththa Foundation). Clinicians from Meththa Foundation have visited Uganda and exchanged ideas and shared good practice 5. Preliminary digital maps of the region using GIS technology have been developed and used in sampling population clusters 6. Our first paper titled: "Major limb loss (MLL): an overview of etiology, outcomes, experiences and challenges faced by amputees and service providers in the post-conflict period in Northern Uganda" has now in Print (Journal of Global Health Reports) |
First Year Of Impact | 2018 |
Sector | Digital/Communication/Information Technologies (including Software),Education,Healthcare,Culture, Heritage, Museums and Collections |
Impact Types | Cultural Policy & public services |
Title | Bespoke software essential for mapping |
Description | High resolution maps are essential for field studies and setting up outreach activity. Northern Uganda does not have suitable maps and the current maps created in the 1960s are out of date. We have created a suitable platform (huckathon.org) and the necessary software is freely available for people who may want to do similar mapping of other regions of Uganda or other parts of the globe where detailed maps are not available |
Type Of Material | Improvements to research infrastructure |
Year Produced | 2018 |
Provided To Others? | Yes |
Impact | Using these tools we have developed and provided digital maps of Fort Portal in South West Uganda for colleagues from the University of Salford (Professor Louise Ackers). These maps are being used by the Salford Team to deliver services and field studies |
URL | https://github.com/jonnyhuck/huckathon.org |
Title | GIS Mapping platform for Northern Uganda |
Description | Epidemiological studies in the field requires sophisticated maps of the region. We have used GIS technology and have developed preliminary maps of the region. Topographical Details are currently being added and work is in progress. However maps already made have been made available to all users by uploading the data onto 'openstreetmap' - an open resource available on the Web. We have created a platform where volunteers can add local details and the platform is freely available. |
Type Of Material | Improvements to research infrastructure |
Year Produced | 2018 |
Provided To Others? | Yes |
Impact | Low resolution maps developed using this platform complete the prevalence study. The tools have also been used by research colleagues from the University of Salford - Professor Louise Ackers, to support their work in Uganda. A Gulu GIS mapping hub - using local academics and volunteers, has been established as a result of this work. According to the Vice Chancellor of the University of Gulu Professor George Openjuru, 'the ability develop such maps using local volunteers is a vital step in delivering the University's mission of community empowerment'. |
URL | http://huckathon.org |
Description | Following the work supported by AHRC grant we have now established a network of Prosthetic limb service users and service providers. This network involves the UK (University of Manchester and University of Salford), Sri Lanka (University of Ruhuna) and Uganda (University of Gulu). This partnership has access to over 30,000 MLL victims. |
Organisation | University of Ruhuna |
Country | Sri Lanka |
Sector | Academic/University |
PI Contribution | A networking meeting held in October 2019 brought together representatives of this partnership from all three countries together for a networking meeting in Manchester. This meeting was supported by the Manchester GCRF QR funds. The meeting discussed the future funding streams to support ongoing work. The outcome from these discussions over two days was the basis of a successful application to the MRC Applied Global Health Research Grant (Preliminary round). Final submission has been made and the results are pending |
Collaborator Contribution | 1. Familiarising visit by 3 Members of Meththa Foundation to Gulu: January 2018: Completed 2. Two prosthetic technicians from Gulu have successfully completed a three month training period in Sri Lanka to learn about outreach services. The outcomes/experience have been extremely favourable for all parties concerned: Completed |
Impact | Outreach clinics are now active in Gulu. In 2019, 52 limbs were delivered using this service delivery model: The first time ever in Uganda |
Start Year | 2018 |
Description | Mitigating the technical, psychosocial, cultural and organisational barriers in addressing the holistic needs of victims of major loss (MLL) |
Organisation | University of Salford |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | Our work on prosthetics has enabled us to develop a new partnership with the UOS to develop low-cost prosthetic sciences further |
Collaborator Contribution | As a result of this partnership we are currently in the process of preparing a bid for the new MRC Health and context funding call. Professor Laurence Kenney and Professor Louise Ackers will be co-applicants |
Impact | New grant application |
Start Year | 2018 |
Description | 1. Forum theatre events in three venues engaging over 1000 villagers |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Public/other audiences |
Results and Impact | In Place of War has delivered a programme using forum theatre to help change perceptions of those with disabilities facing stigmatisation in Northern Uganda that have been affected by the war. Forming a theatre company, with trainers from National Theatre UK helping develop skills in forum theatre, the group has delivered outreaches to over 1,000 people and started a process of changing attitudes towards disabled people. |
Year(s) Of Engagement Activity | 2018 |
Description | A talk/seminar at the 150th Centenary celebrations of the Faculty of Medicine, University of Colombo Sri Lanka. February 16th 2020 |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | This workshop highlighted the use of arts/theatre in public engagement. By highlighting MLL as a key problem in post-conflict countries attention of the audience was drawn to the similar issues in Sri Lanka - a key country affected by prolonged conflict |
Year(s) Of Engagement Activity | 2020 |
Description | Guest lecture to Manchester Medical Society |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | Regional |
Primary Audience | Professional Practitioners |
Results and Impact | This was a lecture titled: "Nation building through inclusive health:does the medical profession have a role" drawing on from the experience of our work in Sri Lanka and Uganda. The focus of the talk/message was that the good will/contacts developed through medical interventions can be harnessed effectively to address wider social issues including peace building |
Year(s) Of Engagement Activity | 2019 |
URL | https://www.mms.org.uk/medical-disciplines/anaesthesia/ |
Description | Lecture to the Pan African Congress 2020 |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Public/other audiences |
Results and Impact | This meeting was organised to commemorate the 75th Centenary of the first Pan African Leaders summit that was held in Manchester. It was organised by the Global Development Institute in Manchester via Zoom with a global audience |
Year(s) Of Engagement Activity | 2020 |
Description | School visit: October 2020 |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | Regional |
Primary Audience | Undergraduate students |
Results and Impact | This lecture was aimed at the Foundation Year students (UK and International) in Manchester aspiring to apply for careers in Medicine/Dentistry. |
Year(s) Of Engagement Activity | 2020 |
Description | Stake holder and research partner workshop |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Other audiences |
Results and Impact | This was an extended residential workshop supported by GCRF QR funding to share the experiences so far and pilot data from our project and to determine the future trajectory. It brought together a range of stakeholders and lay members of the public from the UK, Uganda, Canada and Sri Lanka to explore different facets of Post-conflict disability in LMICs |
Year(s) Of Engagement Activity | 2018 |