Research proposal for dissertation.

MSc Sustainable Development

Dr Richard Bircher

Student Registration Number 170002297

February 2020

Title

The impact of sight restorative treatment in Ugandan children on access to education and how their

treatment influences changes in household livelihood strategies.

Research area and overview of importance

This research explores the impact of treatment of childhood sight loss, on a household’s livelihood

strategies and the ability of the child to be educated. It looks at a specific cohort of children who have

received sight restorative treatments over the last two years.

It is proposed that children in Uganda, with impaired vision, pose a burden of dependency on their

households and have marked difficulties accessing education. This restricts household opportunities

and livelihood strategies. Sight correction has the potential to improve a household’s ability to access

and use a range of capitals (as identified in the DFID livelihoods framework) and alter a households

relationship with structures and processes which operate to restrict or facilitate choice.

It should not be assumed that restoring a child’s vision would always alter the livelihood of a

household. A range of factors, such as marked poverty, poor social integration and cultural

expectations, may counter positive change. This study, seeks to illicit empirical evidence of impact,

describes how these come about and what are important restrictive elements.

This study relates to several important global development initiatives:

● United Nations Convention on the Rights of a child 1989

● The development concept of ‘Leave no one behind’ (UNDP July 2018)

● Disability inclusive development (Bezzina 2019) 

● Vision 2020. A World Health Organisation initiative, which identifies sight restoration in

children as a priority area for development.

The impact of caring for a disabled child is of interest to organisations involved in socio-economic

development at local, regional and national levels for several reasons. Firstly, sight problems are

common and unevenly distributed. According to the international NGO Sight Savers, 217 million

people, worldwide are moderately or severely visually impaired, of which 36 million are blind. Nine of

out ten live in developing countries (Sight Savers 2018). There is potential to improve the lives of many

vulnerable people and to uphold their rights.

Secondly, disability, of any form, places a burden on households, and limits participation in education,

economic activity and civil society. Disability on a national scale limits ‘demographic dividends’, by

reducing the ratio between economically active adults and lesser productive dependants. These

dividends are important for developing countries as they undergo transition to a society with

improved life expectancy and reduced birth rates. (Bloom, David Canning and Sevilla, 2003 )

Thirdly, many forms of childhood and adult disability are irreversible, or involve high treatment costs.

This not the case with visual loss, which can often be rectified at a relatively low cost and bring about

long lasting or permanent improvements in physical functioning. Sight restoration can be seen, in

economic terms, a cost effective development initiative. Several authors have attempted to quantify

the potential for improved global prosperity if sight loss prevention and treatment was prioritised.

Grech S. (2016), Frick and Foster (2003), Gordois, et al (2012).

Uganda has well developed human rights and disability legislature that provides a legal basis for

people with disability to make claims on the state for entitlements. National and local laws uphold the

principles of equality of care and equity of access and include specific safeguards for the rights of

disabled children. The most relevant policies, for childhood disability are:

● UN Convention on the rights of a Child. (Ratified by Uganda 1990)

● The constitution of the Republic of Uganda. (1995)

States that no child shall be deprived of medial, economic or social benefit. Article 35 lists the rights of

children with disability.

● Republic of Uganda Children’s act (1997).

Provides children with disabilities with the same rights as all children

● Uganda National Council of Disabilities Act (2004).

Provides for disability councils, who influence government policy and ensure laws regarding disability

are implemented.

● Republic of Uganda. (2006). The Persons with Disabilities Act.

● Republic of Uganda Equal opportunities Act (2006).

Provides for equality in employment and access to services.

● UN Convention on the rights of Persons with Disability (2006) (Ratified by Uganda August

2008)

However, there is considerable disparity between the intentions of these policies and how disabled

people in Uganda experience their rights and entitlements. The National Union of Disabled Persons of

Uganda, have studied the experiences of people with disability for three decade and find many state

sanctioned entitlements are poorly realised. This is markedly influenced by demographics, income

level and social status. National Union of Disabled Persons of Uganda. (2005).

On a local level, this research is likely to provide useful information to voluntary or state organisations

on how to improve the impact and targeting of projects that are aimed at helping families with

disabled children achieve sustainable livelihoods.

This study uses a livelihood model. This method is chosen as it has substantial pedigree in

development research it is participatory, can be tailored to a local Ugandan population. It provides an

analysis that is not limited to economic factors.

This research particularly focuses on change of livelihoods rather than quantification of that livelihood

(which is beyond the scope and resources of this dissertation). I will develop and use a simplified

change matrix, based on the DFID livelihoods model. (Simplified in terms of a reduced number of

questions compared to large-scale livelihood questionnaires, which seek to quantify and describe

livelihoods in their entirety). This will be employed during household interviews.

Research Questions

Following a child’s eye treatment, what are the changes, in their educational attainment and

attendance and is there a correlation with the degree of improvement in visual acuity?

What are the reported changes on household’s livelihood strategies following the treatment of

a child’s sight problem?

What are the major processes by which households identify as instrumental in allowing them

to alter their livelihoods?

Research Context and Literature Review

The importance of disability in development has been a recent focus of attention. The United Nations

(2015) adopted the 2030 Agenda for Sustainable Development pledging to, ‘Leave no one behind’

highlighting the need for Disability-inclusive Development, and ratified the 2016 Convention for the

Rights of people with Disability.

‘Vision 20:20. The right to Sight’, a joint venture by the World Health Association and the International

Agency for the prevention of Blindness was adopted in 1999. In 2013 at the World Health Assembly

unanimously adopted the ‘Universal Eye Health: a Global action plan 2014-19. This plan highlighted

the burden of eye disease in developing countries and how inexpensive the majority of measures are

that prevent and treat severe sight loss.

A literature search of SOAS library, JSTOR, Elsevier and Google Scholar using a combination of key

word search terms (eye treatment impact children) returned no results of impact assessments (within

the top 100 listed most relevant references) and no study reported the effect on households of

restoring a child’s vision in the developing world.

In the absence of relevant research findings on the impact of sight loss treatments on household

livelihoods, a second literature search was undertaken to explore how childhood disability, of any

form, influences family structure, economics and social integration. Search terms were broadened to

illicit descriptive research, which did not have to include the assessment of an intervention. (Using the

same four on-line libraries and, key search terms: child disability household impact, and Uganda)

It is worth noting, this broadening of literature review makes an unsubstantiated assumption that all

disabilities influence household opportunities and development linkages in a similar way to sight loss.

This may not be the case.

Issues in accessing financial and physical capitals

Research suggests the influence of a disabled child on a household’s access to financial capitals is

substantial. In the book, ‘Disability, health and Human Development’, Mitra (2017) used panel data to

explore the socio-economic outcomes of disability in four African countries with high poverty indices

(including Uganda) and found a strong consistent association with multi-dimentional poverty, low

income and multiple deprivations. She suggests that households were less successful in accessing

income to escape from poverty, when they included a disabled child.

A detailed study, using extensive data collection in Ireland by Roddy (2014) entitled ‘A socioeconomic

profile of childhood disability’ highlighted the way in which caring for a disabled child acts as a barrier

to improved wealth by placing two economic burdens on a household. Firstly, increased expenses and

secondly a process quoted as ‘an income penalty in the formation of barriers to entering and sustaining

employment’. Groce et al’s (2014) report, on the rarely studied issue of disability and inheritance,

demonstrated how disabled people and families, in developing countries are frequently denied

inheritance and have little recourse to change this.

Issues in accessing Human and Social Capitals

Research demonstrates the influence of negative cultural and social attitudes (stigmas) on the lives of

disabled children and their households. Mulumba 2014, carried out qualitative interviews with

disabled people from the Gulu region of Uganda and found a consistent theme of a sense of ‘community

marginalization present within ( ) persons living with disabilities’. People reported feeling and

experiencing ‘political sidelining, discrimination and inequitable access to health services’.

The World Bank Economic Review, 2008, published a study of 14 household surveys in 13 developing

countries (Filmer 2008) and demonstrated that disabled children may not ‘systematically live in

poorer households, but they are less likely to attend school’ to a degree which dwarfs the effect of

other characteristics such as gender, rural living or poverty. In the majority of countries studied more

than 50% of disabled children were never enrolled in school. (UNICEF 2013)

A US demographic study in 1992 specifically looked at the influence of child disability on family

structure Corman & Kaestner, (1992). This study elicited pervasive social restrictions, which worked to

augment an economic burden. They found the responsibility of caring for a disabled child falls largely

on mothers, and they are less likely to be married. The study suggested it was the presence of the

disabled child, which influenced marital status, not that unmarried women give birth to more children

with disability. This study states ‘children in poor health are more likely to face obstacles beyond their

illness because they are more likely to suffer the consequences of poverty ( ) result from being raised in a

female headed household.”

Similar complex socio-economic pathways are seen in Uganda, where disabled children are frequently

abandoned by fathers and raised by single mothers. This leaves disabled children, in precarious social,

cultural and economic situations. ACPF (2011).

A study in 2016 in the Netherlands, Rainey et al (2016) qualitatively explored the impact of low vision

on the lives of children (not their households) and describe a range of physical, psychological and

social detriments, which ‘education and employment can facilitate or hinder participation’. This

demonstrated how external processes and institutions influence outcomes, both positively and

negatively. One major process for this, in Uganda, was identified by Devries et al (2014) who reported

high levels of violence against disabled primary school children. They concluded ‘the school

environment is one of the main venues at which violence is occurring’

Primary and secondary health provision for sight problems in Uganda is poor. Uganda has an

estimated population of 42 million and prevalence of blindness in the total population is estimated at

1%. There is currently one ophthalmologist (eye specialist) to a million people and one ophthalmic

clinical officer to 200,000 of the population. Uganda-UK Health Alliance (2017)

Official state registers of childhood sight loss are not present in Uganda and there is marked under-

reporting. The 2014 Census data, for the Jinja area reports 4.7% of children aged 2-17 have a

disability of any form and 6% of the population at any age have a ‘seeing disability’. (Jinja: National

Population and Housing Census 2014) In the 2005/6 Uganda Household Survey, sight problems (in the

whole population) were reported as the commonest disability, affecting a third of people who self

reported as being disabled. Uganda Society for Disabled Children (2017).

The commonest causes of childhood sight loss are cataracts, corneal ulceration along with infections

and allergic conjunctivitis (Waddell 1988) Local charities in the Jinja region of Uganda unofficially

report a register of 500 children who fail to attend school because of sight problems. (Verbal

communication by JOPDC, December 2019)

The research supports the view that there are large numbers of disabled children, (with reversible

visual loss), who are living in complex socio-economic-cultural networks, which have profound

inhibitory influence on access to education, alter family structure and reduce economic and social

entitlement. In addition the relationship with local structures and processes has the ability either

hinder or facilitate change. I was unable to identify research that describes the impact of sight

treatments on household livelihoods.

Partnership for this research

I will be working with an organisation called The Jinja Organisation of Parents of Deaf Children

(JOPDC) a grass roots community charity, which works with children of any disability and their

families. This organisation has, for two years, facilitated the treatment of children with severe sight

problems by a visiting sight treatment ‘work camp’ from the Moorfields hospital, London. During that

time, approximately 100 children have received eye care, and the majority have had improvements in

vision. This provides an ideal cohort for study as the charity has maintained supportive links with the

majority of the children and households.

JOPDC fills many of the gaps left by a paucity of local and state social security and social protection.

Currently Uganda’s educational enrolment and completion rates do not reach Millennium

Development Goal targets and the state social transfer programme, S.A.G.E., is small compared to

surrounding countries, such as Rwanda and Kenya, and targets a small minority of the population.

UNICEF/Ministry of Gender, labour and Social Development. (2016).

JOPDC are keen to understand the impact of their work, and explore ways to make their work more

effective.

This evaluation was requested by OPDC in order to quantify the impact of sight treatments in terms of

● Access to education

● Opportunities to the child’s household

Research Design, Methods and Fieldwork

Research Design

This study is primarily a cross sectional, cohort study using social research methodology, carried out

in a rural area of Uganda, District of Jinja. Participants will be asked to provide information on their

current livelihoods and describe how they perceive it has changed since their child has undergone eye

treatment.

Main data collection will be from household interviews (primary care giver being the chosen

interviewee) where a child has received sight restorative treatment, within the last 24 months. In

addition, group interviews will be undertaken to further explore the main ways in which households

were able to utilise opportunities to alter their livelihoods. It is appreciated; retrospective recall is

likely to introduce recall bias and inaccuracies.

I will base the design of the household questionnaire on the DFID livelihoods framework and use the

policies proposed by the Secure Livelihoods Research Consortium (Levine 2014)

This is augmented by secondary data collection on school performance and attendance and correlated

with medical records that describe the level of sight restored.

By using a livelihoods approach, focus is not just on the ‘maintenance and improvement of the material

conditions of life’ (Carr 2013) and instead highlights what is important for local households in order to

live a sustainable livelihood.

The design of a livelihood questionnaire will take into account several important factors

1. Questions must reflect local livelihood strategies, which have meaning and importance for

local people (Lax, Krug Hanburg 2013).

2. The purpose of the data collection is not to measure or quantify livelihood strategies but rather

illicit important changes perceived by households over a variable period of time, 24 month

maximum.

3. In order to identify patterns in livelihood change, a large enough sample of households will be

needed. My current intention is to interview all 100 households, though this may not be

possible because of restricted time and consent. A random sampling method will be used if

necessary, of at least 50% of the cohort.

4. Interviews will need to be short, in order to be completed in time allocated and to maintain

interviewee interest. Therefore enquiry needs to be limited to important areas (important

defined by local people).

Design process of a livelihoods questionnaire will involve the analysis of The National Uganda Census

information, Jinga District Area Census Information, 2014 and Uganda’s Social Accounting Matrix

(Thurlow, J. 2008) and DFID guidance. Prior to the period of field data collection (June 2020) a sample

questionnaire will be trailed

Group interviews will be unstructured conversations where feedback is given on the initial findings of

the livelihoods questionnaires and discussion held on the processes and ways in which households are

able to enact changes in their livelihoods. This will be conducted in local languages (including English

if appropriate).

Analysis of a child’s educational achievement will involve the collection of copies of school reports, and

extraction of end of year grades, as well as recall from households on school attendance. Grades will

be compared to previous years prior to eye treatment.

Data collection methods

Primary Data

Primary household data will be collected by interviews by lead researcher (Dr Richard Bircher) and

support researcher (JOPDC Worker) held in the interviewee’s home or other convenient place. Data is

collected at the time of interview by questionnaire. Interviews will not be audio recorded.

Data collection includes

● Demographic information on the household

● Current main strategies of maintaining a livelihood

● An account on how these livelihood strategies have changed over the last 24 months

I propose to design a method of livelihood data collection which facilitates a participative approach,

utilising two questions for each of the 5 Livelihood capitals (Physical, Social, Natural, Financial and

Human) and a limited number of questions relating to the influential of structures and processes in

keeping with the Sustainable Livelihoods Framework, DFID (1999).

Group interviews will involve 4 or more household adult representatives. A maximum of three such

interviews are envisaged. These interviews will be audio recoded and an analysis of themes made.

Themes will reflect what participants consider are the most important and influential processes by

which they are able to alter their livelihoods.

Secondary Data

Permission will be sought to access locally held JOPDC records on sight treatments and changes in

Visual Acuity in children. The only data recorded will be:

● Cause of sight loss

● Nature of eye treatment

● The change in child’s Visual Acuity

Permission will be sought to make copies of any of the child’s school reports in the last 24 months, and

these reports will be analysed for educational achievement and attendance (note: all Uganda Children,

enrolled in primary or secondary school participate in end of year assessment exams). Educational

attainment and attendance will be stratified into nominal categories to aid data analysis.

Secondary data will be anonymised and stored password protected.

Data analysis

Data analysis involves several steps

1. The correlation of educational achievement (measured in terms of improvement of grades)

and or school attendance with the scale of visual acuity improvement a child experiences. This

will involve statistical modelling and regression analysis. I will use Pearson’s Correlation as a

preferred form of linear regression.

2. An analysis of the responses to household livelihood questionnaires, specifically focussing on

two elements.

a. Patterns of livelihood strategies

b. Patterns of how livelihood strategies have changed since a child has undergone eye

treatment.

This will involve descriptive statistical presentation using tally charts, proportions and pattern

recognition.

3. Analysis of group interviews to illicit the factors, which have facilitated a change in livelihoods,

or restricted such change. These will be categorised around the 5 Sustainable Livelihood

capitals, Local structures and cultural processes.

Results will be presented in statistical, quantitative and narrative form.

Plan of work

Ethics approval and consent procedures are paramount in this project, as data collection involves the

use of medical records, family data and school performance. Significant time is apportioned to

ensuring this is carried out correctly.

Care will be taken to ensure interview processes are culturally acceptable and appropriate. The

household questionnaire will be trialled prior to roll out. Field interviews can be carried out in two

phases, the first being household surveys. It is envisaged that a trained researcher (with local language

skills) and myself will carry out interviews over a four-week period. (I acknowledge this may need to

be revised due to practicalities and time constraints.) To reduce inter-operator variation one lead

interviewer will be used.

Group interviews to explore linkages will take place towards the end of June, when preliminary

patterns from the household interviews will be available.

Proposed schedule of work (GANNT chart)

Jan Feb March April May June July August Sept

Proposal and literature review

Applications for research/work permits visa

Ethics approval

Process to request Moorfields/JOPDC data

Trial and adaption of Interview Questions

Collection & analysis of educational data

Household Field questionnaires

Group Interviews

Write up and data analysis

Ethics and Risk Assessment

There are several essential ethical considerations. Most importantly, is the need for consideration of

the sensitive nature of data being collected. Data describes medical conditions, treatment of children

and their school performance. During household interviews, people will be asked to recall their

experiences when a child had sight difficulties and this may be distressing. It is essential that careful

consideration be given to informed consent.

Confidential data will be stored safely and anonymised at an appropriate time. Patient identifiers will

not be available in any write up or future publication based on this research.

One factor that partially mitigates risk of confidentiality and consent are my professional

responsibilities as a doctor. I have a statutory duty to maintain medical confidentiality reinforced by

regulatory bodies. General Medical Council (Duties of a Doctor 2020). I also have experience in

anonymising and ensuring safe encrypted storage of data in my role as a General Practitioner and

‘Caldecott Guardian’.

During my stay in Uganda, I intend to also be employed at a local Hospital (part time) and have applied

for a work visa.

Proposed Consent procedure:

1. JOPDC workers will approach families in advance of field research period and inform the

families of the nature of the research project and ask if they are willing to participate.

2. Consent to view medical records and educational records will be taken by JOPDC workers and

only when consent approved, copies will be made and passed to researchers.

3. Consent to interviews will be taken prior to each interview, using a standard consent form.

Consent will be requested in writing, with signatures. Where participants struggle to read this

will involve verbal consent.

Further details are provided on the attached Ethics, Risk assessment and Consent form. And model

Consent form.

WORDS 3783.

______________________________________________________________________________________________________________________

Reference list

ACPF (2011). Children with disabilities in Uganda: The hidden reality. Addis Ababa: The African Child Policy Forum

Bezzina, L. (2019) Disability and international development: a guide for students and practitioners, Disability & Society, 34:4, 670-672

Bloom, David E, Canning, David. and Sevilla, Jaypee, (2003) The Demographic Dividend: A New Perspective on the Economic Consequences of Population Change

Carr, E. (2013) Livelihoods as Intimate Government: Reframing the logic of livelihoods for development, Third World Quarterly, 34:1, 77-108

Corman, H. Kaestner, R. (1992). The Effects of Child Health on Marital Status and Family Structure. Demography, 29(3), 389-408.

Devries, K.M., Kyegombe, N., Zuurmond, M. et al. (2014) Violence against primary school children with disabilities in Uganda: a cross-sectional study. BMC Public Health 14, 1017

Duties of a Doctor (2020). https://www.gmc-uk.org/ethical-guidance/ethical-guidance-for-doctors/confidentiality/ethical-and-legal-duties-of-confidentiality. Accessed 8.2.20

Filmer, D. (2008). Disability, Poverty, and Schooling in Developing Countries: Results from 14 Household Surveys. The World Bank Economic Review, 22(1), 141-163.

Frick KD, Foster A (2003). The magnitude and cost of global blindness: an increasing problem that can be alleviated. Am J Ophthalmol 135: 471–476.

Gordois, A., Cutler, H., Pezzullo, L., Gordon, K., Cruess, A., Winyard,S., Hamilton, W., Chua, K. (2012). ‘An estimation of the worldwide economic and health burden of visual impairment’. Global Public Health, 7 (5), 465-481

Grech S. (2016) Disability and Development: Critical Connections, Gaps and Contradictions. In: Grech S., Soldatic K. (eds) Disability in the Global South. International Perspectives on Social Policy, Administration, and Practice. Springer, Cham

Groce, N. London, J. Stein, M. (2014) Inheritance, poverty, and disability, Disability & Society, 29:10, 1554-1568

Jinja National Population and Housing Census (2014). https://www.ubos.org/wp-content/uploads/publications/2014CensusProfiles/JINJA.pdf Accessed 14.2.20

Lax, Krug Hanburg (2013). Thunen Working paper 7, Livelihood Assessment, Lax, Krug. Hanburg

Levine (2014) How to Study livelihoods: Bringing a sustainable livelihoods Framework to life. Working paper 22.

Mitra, S. 2017 Disability, Health and Human Development. Book Series: Palgrave Studies in Disability and International Development. 

Mulumba, M., Nantaba, J., Brolan, C.E. et al. (2014) Perceptions and experiences of access to public healthcare by people with disabilities and older people in Uganda. Int J Equity Health 13, 76

National Union of Disabled Persons of Uganda. (2005). Baseline study on the problems and challenges faced by people with disabilities.

Rainey, L., Elsman, E., Van Nispen, R., Van Leeuwen, L., & Van Rens, G. (2016). Comprehending the impact of low vision on the lives of children and adolescents: A qualitative approach. Quality of Life Research, 25(10), 2633-2643.

Roddy, A. (2014). A socioeconomic profile of childhood disability. In Cullinan J., Lyons S., & Nolan B. (2016), The economics of disability: Insights from Irish research (pp. 74-92). Manchester; New York: Manchester University Press.

Sight Savers (2018) Annual report. https://www.sightsavers.org/wp-content/uploads/2019/08/AnnualReport2018.pdf. Accessed 16.2.20

Uganda Society for Disabled Children (2017). A Directory of National And District Organisations of and for Persons With Disabilities: P3.

UNDP (2018) What does it mean to leave no-one behind? UNDP Discussion paper July 2018.

UNICEF (2013). The State of The Worlds Children 2013. Children with Disabilities. United Nations Childrens fund 2013. New York.

UNICEF/Ministry of Gender, labour and Social Development. 2016. Social Protection Investment case. https://www.unicef.org/esa/sites/unicef.org.esa/files/2019-04/Investment-Case-for-Social-Protection-in-Uganda-%282016%29.pdf Accessed 14.2.20

UUKHA website 2017 report https://www.uukha.org, accessed 13.2.20

Thurlow, J. (2008). “A 2007 Social Accounting Matrix for Uganda.” International Food Policy Research Institute, Washington, DC, USA

Waddell, K. (1988). Childhood Blindness and low Vision in Uganda. Eye (1998) 12, 184-192. Royal College of Ophthalmologists. London.

SOAS, UNIVERSITY OF LONDON

APPLICATION FOR ETHICAL APPROVAL

For TAUGHT STUDENTS (UG/PGT)

SECTION A PART I

Name of applicant Richard Bircher

Student ID no. 170002297 Sex

()

M

X

F

Dissertation/ISP Title:

The impact of sight restorative treatment in Ugandan children on access to education and how their treatment influences changes in household livelihood strategies.

Date of submission of application: 18.2.20

Supervisor name and department name:

Dr Rebecca Kent. Faculty of Social and Applied Sciences. Canterbury Christchurch University

1. OVERVIEW OF THE STUDY: Describe the purposes of the research proposed. Detail the methods to be used and the research questions and list the main types of research subjects you intend to collect data from. Provide any other relevant background which will allow the reviewers to contextualise your research, including a summary of what you want to learn from each interview group. Do not list the specific questions you plan on asking.

The purpose of the study is to identify the impacts that families/households experience when a child has treatment that restores some or all of their sight. The research further attempts to illicit the major development linkages through which these impacts are produced.

The cohort to be studied are approximately 100 children from Jinja in Uganda, who were helped to attend a visiting eye work camp from the Moorfield’s hospital, London. During two such ‘camps’ in 2018 and 2019 success rates in restoring functional levels of sight are estimate to be in excess of 60%.

A partner NGO, in Uganda, The Jinja Organisation of Parents of Deaf Children (note their work extends beyond deaf children) (JOPDC) were instrumental in identifying disabled children in need. They request this analysis of their work, in order to elicit ways to improve the impact of their activities.

Information to be analysed includes

1. (Secondary Data) Children’s sight condition. (from local JOPDC records)

2. (Secondary Data) Treatment and pre and post treatment visual acuity (from local records)3. (Primary Data) School attendance and performance (from school records held by parents)4. (Primary Data) Information from interviews of parents/households to elicit perceived

changes in livelihood activities after sight treatments.5. (Primary Data) Information from group interviews on the economic, social and cultural

factors which limit or enhance changes in household livelihoods after treatment.

PART II – Risk Assessment2. PROJECT LOCATION(S): Please give location(s) where the research will be carried out.

Household interviews in households in Jinja Uganda. These are mainly rural households.

Group interviews, in local community centres in Jinja Town, Uganda.

Examination of records at JOPDC Offices

3. PROTECTION OF RESEARCHER (Applicant): Please state briefly any precautions being taken to protect your health. Have you taken out travel and health insurance for the full period of the research? If not, why not? What are the main health risks involved and how are you planning on dealing with them? Do you have any health condition that might give you serious problems during your fieldwork? If so, how do you plan to prevent this?

I am a General practitioner, Doctor, working in the UK I have traveled to Uganda many times. I have full immunisation (including yellow fever, rabies, typhoid, hepatitis B) as stated by ‘Fit for Travel’ health advice (NHS guidance). I will be using Malarone anti-malarial tablets during the month of June when I intend to carry out the research, and have mosquito net protection at night.

I have full travel insurance

No interview will be undertaken on my own, as I will require a helper from JOPDC with knowledge of the local languages.

I have no heath condition that will affect this research.

https://www.gov.uk/foreign-travel-advice/uganda website consulted

4. PROTECTION OF RESEARCHER (Applicant): Are you from this region or well acquainted with it? Please state briefly what you consider the main safety issues to be. What precautions are you taking to ensure your safety? Have you read FCO travel advice (see FCO website)? If this suggests the area is dangerous what special safety precautions are you planning on taking to ensure you avoid such dangers?

The area of Uganda is not listed as a dangerous area by UK Government. Most risks arise from traffic accidents or infectious diseases or petty crime. I will be accompanied by a driver with a good knowledge of the local area.

There are no current, on going local disputes or civil unrest.

There is no recent history of kidnapping and ransoms. https://www.gov.uk/foreign-travel-advice/uganda

My accommodation will be with a local family with connections with JOPDC.

There are three hospitals in Jinja offering a range of emergency services.

5. PROTECTION OF OTHER RESEARCHERS: Please state briefly any precautions being taken to protect the health and safety of other researchers, field assistants, translators and others associated with the project if this is applicable (as distinct from the research participants or the applicant).

There will be one field assistant (to help continuity of research processes). They are from the local area, with a knowledge and experience of local risks.

6. RESEARCH PERMISSIONS (INCLUDING ETHICAL CLEARANCE) IN HOST COUNTRY AND/OR ORGANISATION: Generally this will be unnecessary for short periods of research but advice should be taken for those countries that require such permissions to ensure no problems ensue during your fieldwork. Will you need to ask for research permission for this country?

There is a research council of Uganda, and their guidance notes have been consulted. https://www.uncst.go.ug/guidelines-and-forms/

As this evaluation was requested by JOPDC, and does not involve the study of sensitive or government related institutions, local research permission has not sought.

In addition, I will have a work visa for the period of field study, due to volunteering and working in a local hospital. (this is currently being facilitated by the UK-Uganda health Alliance)

7. CONTACTS in the field. Please give the name and contact information for at least one person whom you expect to help you in the field with such issues as locating a research area and introducing you to potential research subjects.

Please ensure as well that we have contact information for at least one person who will be able to locate you during your fieldwork if we are unable to locate you directly

Please also provide your supervisor with your local mobile phone number for the duration of your fieldwork as soon as you have one.

Sebastian Waiswa. Organisation of Parents of Deaf ChildrenKyamaggwa. Jinja+256 752 083810waiswas@gmail.com

Dr Joanna Bircher85 Beech RoadStockportSK3 8HE0161 429 7046Joanna.bircher@ntlworld.com

PART III – Ethical Clearance

8. RECRUITMENT/SELECTION PROCEDURES: How will study participants be selected? Is there any sense in which participants might be ‘obliged’ to participate – as in the case of students, prisoners, patients, camp residents or NGO beneficiaries, for instance? (See no. 11) Entitlement to withdraw consent and when that entitlement lapses must be indicated on the Participant Consent Form used (see sample form included in Section B).

Study participants are the family/household members of a cohort of children who have been assessed and treated by the Moorfield’s Eye Camp in 2018 and 2019. Approximately 100 children. This record is held at the JOPDC offices.

I intend to carry out interviews with these households (with research assistant support)

Where possible participants will be contacted in advance by OPDC workers (as part of their on going informal support), and informed about the study and their consent requested for interview, access to school reports and records of eye treatment. Participants will be free to withdraw from an interview, before, prior or after completion. In cases where a family may live in a remote area, there may be cases where we seek consent just prior to an interview.

No financial payments are made.

9. RISKS TO PARTICIPANTS: Have you thought carefully about what risks to your research subjects might be entailed by involvement in the research? For instance, psychological problems from remembering traumatic events or potential physical danger from government, gangs, rebels, criminal organisations? Is it absolutely necessary to interview such people? How do you envisage protecting them and ensuring information gained from or about them does not fall into other people’s hands?

Secondary data collection (eye treatments and visual acuities) involves the examination of personal medical information. Consent will be requested specifically for this data to be used for research purposes (note the medical data was not collected initially for this purpose). All medical data will be anonymised and patient identifier (names addresses) removed.

Recalling life prior to eye treatments may be distressing for families or children.

It is necessary for myself, and one lead examiner to know the names of the children, in order to correctly identify their household/families. However, after interviews all names will be removed from research records and an identifier number used to protect anonymity. The identifier list will be held securely on one computer, encrypted and password protected.

No child will be named in my write up or any discussion or presentation.

During interviews participants over age 16 will be asked for the direct consent for their primary and secondary data to be used for research purposes. Under age 16, the child’s parent will be asked. Consent should ideally be given in written form, but in cases of illiteracy verbal consent will be taken.

10. VULNERABLE INDIVIDUALS: Specify whether the research will include children, people with mental illness, refugees, internally displaced persons, illegal migrants, asylum seekers, prisoners, or members of other vulnerable groups. If so, please explain the necessity of involving these individuals as research participants and what will be done to facilitate their participation and reduce possible harm to them. If working with people with physical disabilities, please explain how you will provide any special support that they may need, for instance, in relation to communication or to access to

the interview site.

This research will involve the participation of vulnerable groups. Children who have had sight treatment are used to identify subject households. These households are often highly impoverished, with a female head, very few resources and associated with stigma.

Sight treatments may not restore 100% sight, and children may have multiple disabilities as well as sight problems. For this reason, families will be interviewed within their own households where possible (also avoiding unnecessary costs of transportation).

If family members do travel, they will be compensated for their travel expenses.

Large font consent forms will be made available.

Local research assistants will be able to communicate in local languages.

11. PARTICIPANTS IN DEPENDENT RELATIONSHIPS: Specify whether participants will include students or others in a dependent relationship (this could affect their ability to decline to participate). If such participants will be included what will you do to ensure that their participation is voluntary etc.? (Dependent relationships means students/prisoners/refugees/patients of hospitals/clinics or IDPs in camps/clients of NGOs, etc. who might feel obliged to participate since otherwise they may think they will have problems with the authorities or those in the organisations they depend on.)

Participants may feel obliged to participate because they have already received free medical care. It will be stressed that:

1. Participation is voluntary, and consent necessary2. There is no payment or reward3. I am not a member of the team who treated their child’s eye problem4. I am not a member of any government organisation5. Participation neither entitles or precludes further eye treatment

My association with JOPDC is likely to facilitate trust, as this NGO is a grassroots, community run organisation with wide membership and considerable reputation for highlighting the interests of vulnerable children.

12. CONSENT: Please give details of how consent is to be obtained. A copy of the proposed Participant Consent Form, written in simple, non-technical language intelligible to persons at the educational level of your research subjects MUST accompany this proposal form (please adapt and complete the sample Participant Consent Form included in Section B of this document). Please note, before you go into the field your Participant Consent Form should be translated into the local language of your research subjects where appropriate. Also please note that not all participants will feel comfortable signing such a form, in which case pressure should not be placed on them for their names to be written down on your form and verbal consent will be held to be sufficient.

1. JOPDC workers where possible will approach families in advance of field research period and inform the families of the nature of the research project and ask if they are willing to participate.

2. Consent to view medical records and educational records will be taken and if consent given, copies of these reports will be made and passed to researchers. (once received these records will be anonymised and stored securely)

3. Consent to interviews will be taken prior to the interview, using a standard consent form. (see below)

Primary data consent for livelihood interviews

Consent requested in writing, with signatures. Where participants struggle to read this will involve verbal communication of all items on consent form. Consent will be taken prior to each household and group interview.

Secondary data consent

Consent to view school records and locally held JOPDC eye treatment records will be taken, where possible, prior to interviews.

13. CONFIDENTIALITY: Please state who will have access to the data and what measures which will be adopted to maintain the confidentiality of the research subject (e.g. will the data be anonymous and if so in what ways?)

Access to the collected data is allowed for one research assistant and myself.

After data collection, all cover sheets that have patient/household identifiable information will be separated from respondent’s answers. An identifier number will be used from that point onwards.

Data will be scanned/entered into and held on a secure, password protected PC. Back up will use an on line web based storage facility (drop box) with password file protection.

Any secondary data involving health records will be transferred using the NHS N3 end to end encrypted data transfer systems (NHS Mail)

No identifiable information will appear in any write up, discussion or presentation.

14. ANTICIPATED USE OF RESEARCH DATA ETC: Do you anticipate using your data beyond your dissertation, e.g. for publishing articles or in a report for your organisation? If so, please state

I envisage using the findings of my dissertation to help advise the work of JOPDC. They are keen to improve the impact of their work. This study may highlight important linkages that could be used to help families gain more secure livelihoods. The study would be linked into the JOPDC website and possibly Moorfield’s Hospital Eye Camp promotional material. This depends on findings.

15. FEEDBACK TO PARTICIPANTS: Will the data or findings of this research be made available to participants? If so, specify the form and timescale for feedback – e.g. an electronic copy of your dissertation/ISP. What commitments will be made to participants regarding feedback? How will these obligations be verified?

Feedback to participants is logistically difficult, as most do not have postal addresses. Feedback will be given 6 months after the June research period (December 2020)

1. All participants will be asked if they want feedback on the research at the time of interview2. All participant will be informed that copies can be obtained from JOPDC offices in Jinja3. Where households have access to mobile phones a link to research will be sent

4. Households with postal addresses will be sent copies on request

16. DURATION OF PROJECT

START DATE March 2020 (field research starts 1.6.20)

END DATE August 2020

Signature (Proposer of research) Date

Richard Bircher

22.01.2020

The Supervisor is asked to certify the accuracy of the above account.

Signature (Supervisor of student) Date

Rebecca Kent

18.02.2020

It is preferable for signatures to be electronic on the emailed form. If not possible ask your supervisor to email their consent rather than writing it on the form. Do not send paper copies. If a paper copy with a

handwritten signature is required, you will be informed

Participant Consent Form

Researchers details

Dr Richard Bircher

SOAS, University of London

England

Title of Project

Official title: The impact of sight treatments, in Ugandan children, on access to education and how their treatment influences changes in household livelihood strategies?

Simple title: (Used to give greater clarity to participants) ‘How children’s eye treatments affects their learning at school and what are the changes to the household.

Introduction

The purpose of this form is to provide you with information so you can decide whether to participate in this study. The researcher is happy to answer any of your questions. Once you feel you understand what this study entails and have had your questions answered, you can decide whether or not to participate. If you agree, please sign this form or give verbal consent.

(For group interviews) Please also tell us if you are willing to have this interview audio recorded. Please note that this recording will not be made available to anyone other than the lead researcher Dr Richard Bircher and if necessary his supervisor. It will only be used for the purposes of writing down what has been said.

Your participation is voluntary and you may decide to leave the study at any time. You can refuse to answer any questions you are uncomfortable with. You may withdraw permission for your data to be used, at any time up to 31.6.20 in which case notes, transcriptions and recordings will be destroyed. Withdrawal or refusal to participate will not affect your relationship with the Jinja Organisation of Parents of Deaf Children, or the Moorfleld’s Eye Camp and will not affect any future requests for eye treatment.

Purpose of the Study

You have been asked to participate in a study about how the eye treatment your child received has changed your life. We are looking at three things

1. How your child’s eye sight has changed2. How your child’s school performance and attendance has changed3. How life has changed for you and your family since your child’s sight treatment.

The purpose of this evaluation is to understand what things change for families when a child has eye treatment and how that change comes about. This is helpful for organisations like JOPDC to improve the way they help people in similar circumstances.

Use of the data

The findings will be used to form part of my dissertation (university study) and will be shared with JOPDC and Moorfield’s Hospital.

If you wish to receive a copy of the final dissertation once completed I will happy to provide you with an electronic copy if you have access to a computer or smart phone. Or paper copies will be available from the JOPDC offices in Jinja

Procedures to be followed

To assist this study I am asking you to agree to participate in a personal interview. We can arrange a time and date which is convenient to you once you have confirmed your consent. The interview will take no longer than 45 minutes to complete.

I would also like to take copies of your child’s school reports (if you have them) and also look at the treatment notes stored by JOPDC regarding the treatment your child received.

Risks

There are no foreseeable risks from participating in this study.

Compensation

We are not able to pay you for participating in this study.

Possible benefits of the study

This study will help the Jinja Organisation of Parents with Deaf Children, understand how to make their work more effective. The findings may be used when asking future donors for money.

Statement of Privacy and Confidentiality

Our reports will not contain any names or addresses and it will not be possible identify you or your family from the report.

Contact Information

My telephone number is 00 44 7976885871

My email address is: r.bircher@ntlworld.com

__________________________________________________________________________________

Confirmation and consent

I confirm that I freely agree to participate in this study. I have been briefed on what this involves and I agree to the use of the findings as described above.

● I give/ do not give permission for the interview to be recorded. (group interview only)

● I give/do not give permission for my child’s school records to be used.

● I give/do not give permission for my child’s eye surgery records to be used.

Participants signature:__________________________________________________

Name:________________________________________________________________

Date:_________________________________________________________________

I confirm that I agree to keep the undertakings in this contract.

Researcher signature:___________________________________________________

Name:__________________________________________________________________

Date:___________________________________________________________________

Section C – Review report and decision.To be completed by the applicant:

Name of applicant: Dr Richard Bircher

Supervisor Dr Rebecca Kent. Faculty of Social and Applied Sciences. Canterbury Christchurch University

Dissertation Title: The impact of sight restorative treatment in Ugandan children on access to education and how their treatment influences changes in household livelihood strategies.

RESUBMISSIONS – IF YOU ARE ASKED TO RESUBMIT YOUR APPLICATION FOLLOWING REVIEW BY THE COMMITTEE PLEASE INCLUDE A LETTER WITH YOUR REVISED APPLICATION DETAILING HOW YOU HAVE RESPONDED TO THE COMMITTEE’S COMMENTS. Please ensure your supervisor has approved your revisions before resubmission.

To be completed by the Supervisor, who may seek wider support if required.

Supervisor’s recommendation ():

Accept

Request modifications

Reject

Supervisor’s Comments