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Full title: ‘We Are the People Whose Opinions Don’t Matter’. A Photovoice
Study Exploring Challenges Faced by Community Health Workers in Uganda.
Authors
James O’Donovan1,2, Rebecca Hamala2, Allan Saul Namanda2, David Musoke3,
Charles Ssemugabo3, Niall Winters1
Affiliations
1. Learning and New Technologies Research Group, Department of Education,
The University of Oxford, Oxford, UK.
2. Division of Research and Health Equity, Omni Med, Mukono, Uganda.
3. Department of Disease Control and Environmental Health, Makerere
University School of Public Health, Kampala, Uganda.
*Corresponding Author
Name: Dr. James O’Donovan
Address: St Edmund Hall, Queens Lane, Oxford, Oxfordshire, OX1 4AR
Email: james.o’donovan@seh.ox.ac.uk
Twitter handle: @james_odonovan
ORCiD: 0000-0002-7248-543
Word count: 10,151 (inclusive of tables, references, figure captions, footnotes,
endnotes)
Abstract
Understanding the experiences of community health workers (CHWs) through the
use of participatory visual methods (PVMs) has been relatively underexplored.
One such PVM is photovoice, which involves the capture of photographic images
related to issues of social importance. In this study, we explore challenges faced
by eight CHWs in Mukono District, Uganda through the use of photovoice. Over a
six-week period, CHWs captured 62 relevant photographs. Subsequent individual
interviews and group discussions were held with the CHWs regarding the content
of the photographs. Using traditional content analysis, a range of themes related to
perceived challenges faced by the CHWs were highlighted, including poor
infrastructure, insufficient on-going training and supervision, relationships with
other health professionals and equipment supplies. Suggestions were raised as to
why such challenges existed and how they could be addressed; mainly through
increased roles of the government and supporting NGOs. Overall, photovoice was
generally a feasible method to highlight the challenges faced by CHWs, however
community acceptability regarding image capture and consent taking may prove
challenging, given past historical experiences. The use of photovoice in this study
highlighted the need to address the multiple and complex challenges faced by
CHWs in order to help them fulfill their roles.
Key words: Photovoice, Participatory Visual Methods, Uganda, Community Health
Worker, Village Health Team.
Funding details: The study was jointly funded by The British Medical Association
Charitable Arm [Number: Charitable Arm Grant BMA2018/1] and The Economic and
Social Research Council [Number: ES/P000649/1] .
Introduction
The principle of ‘Health for All’, advocated for in the 1978 Alma-Ata declaration,
placed Primary Health Care (PHC) at the centre of achieving this goal (Ozano,
Simkhada, Thann, & Khatri, 2018). Yet, despite this aim, many low- and middle-
income countries (LMICs) face a severe shortage of professionally trained health
workers, representing a major barrier towards achieving a comprehensive PHC
system. As such, many LMICs have adopted PHC models underpinned by a cadre of
workers known as Community Health Workers (CHWs).
The term ‘Community Health Worker’ is often used as an umbrella term to describe
community based lay people trained to deliver health interventions in the area they
live (Lewin et al., 2005). They belong to the formal health system, are managed by
the government or an implementing partner (such as a non-governmental
organisation), and although they receive formal training, they have no
paraprofessional certification (Lewin, et al., 2005).
One country that has adopted the CHW model for delivery of PHC is Uganda, where
CHWs are referred to as members of a Village Health Team (VHT). In Uganda,
CHWs have been active since 2001 in a voluntary capacity (O'Donovan, Stiles, et al.,
2018). Following a period of sensitisation and awareness raising led by an officer
from the district health team, CHWs are selected from the community through a
popular vote (Kimbugwe et al., 2014; Turinawe et al., 2015). The Ugandan Ministry
of Health suggests that a CHW should be, ‘at least 18 years of age, a village resident,
able to read and write in the local language, a good community mobilizer and
communicator, a dependable and trustworthy person, someone interested in health and
development and someone willing to work for the community’ (Sekimpi, 2007). The
original remit of the CHW in Uganda was relativity broad with the aim of “recording
demographic and health data, educating on health and hygiene topics, mobilizing
families to engage in health programs such as vaccination campaigns, monitoring for
illness, making referrals, and providing post-discharge follow up” (Ministry of Health
Uganda, 2015 ). However, according to a Ministry of Health statement released in
2015, the VHT strategy has been implemented in different ways across Uganda’s 134
districts since 2001. Funding of the programme by the government has been gradually
reducing since its inception, leaving the IPs [implementing partners] to fund most of
the activities” (Ministry of Health Uganda, 2015 ). As such, this has resulted in a
disjointed approach to CHW programme implementation, with significant variability
across districts in CHW training. This means some CHWs are trained and equipped to
deal with a variety of illnesses including childhood diarrhoea, malaria and pneumonia,
HIV and TB, whereas other CHWs have been trained in a more vertical approach to
address specific groups of diseases. Despite this, several successes of the CHW model
have been reported, especially improved access to maternal and child health services
in rural or resource poor areas (Ekirapa-Kiracho et al., 2017; Mangwi Ayiasi,
Kolsteren, Batwala, Criel, & Orach, 2016; Namukwaya et al., 2015).
Yet, despite the reported successes of the CHW model, multiple challenges have also
been documented. These include CHWs receiving no financial remuneration for their
work, a lack of on-going training, poorly organized and dysfunctional support
networks, and a lack of resources, such as medicines and basic equipment
(Kimbugwe, et al., 2014; Lee J, 2015; Mays et al., 2017). Of the small body of work
that explores the challenges faced by CHWs, little has been conducted that explores
challenges from a more participatory standpoint. As such, community based
participatory research (CBPR) which is “geared towards planning and conducting the
research process with those people whose life-world and meaningful actions are under
study” has been proposed as one alternative method to challenge ‘top-down’ research
designs (Bergold and Thomas, 2012).
One CBPR method through which to explore the views of CHWs is photovoice
(O'Donovan, Thompson, et al., 2018). Photovoice is a participatory visual method
(PVM) where individuals can “identify, represent, and enhance their community
through a specific photographic technique” (Wang and Burris, 1997). It involves
participants using a camera to capture photographic images on a topic of community
importance. The photographs are then used as discussion points and aim to promote
“critical dialogue and knowledge about important issues”, with the ultimate goal of
bringing about social change (Wang and Burris, 1997).
In this study, we document the use of photovoice with a group of VHTs in rural
Mukono, Uganda, to explore the challenges they face in their role as PHC providers.
Materials and Methods
Context and Setting
This photovoice study was embedded as the first phase part of a larger action-research
project aimed at improving the training and supervision of CHWs in Mukono District,
Uganda. As such the aim of this photovoice study was to try explore the wider issues
faced by this particular group of CHWs, prior to the later implementation of more
specific interventions aimed at addressing training and supervision. The central focus
of this study was to engage in participative inquiry and practice, with our work being
underpinned by a constructivist philosophy.
The study took place between October 2018 and January 2019, in Seeta Nazigo
Parish, located in the Nakisunga sub-county of the Mukono District. According to the
most recent Uganda Population and Housing Census, Nakisunga has a population of
48,000 people, the majority of which are subsistence farmers residing in rural areas
(Mukono District Local Government, 2015). Nakisunga has one Level Three
government-only funded health centre, Seeta Nazigo Health Center III (SNHC III),
located in a rural area of the sub-county. The health centre employs a facility manager,
three nurses, two lab technicians, two midwifes, a data assistant and a clinical officer.
These staff are supported by CHWs, who work in the surrounding community and
refer patients to the health centre for review when necessary. According to the
Mukono District Health Office, there are approximately 1700 volunteer CHWs in the
district, supported by a range of non-government organisations (NGOs).
Implementation Partners
This study was implemented in partnership with Omni Med, a NGO that has been
training CHWs in Mukono District since 2009 with the support of the Mukono
District Health Office and Ugandan Ministry of Health. A partnership was also
formed with Makerere University School of Public Health, as they have previously
undertaken photovoice studies with CHWs in Wakiso District of Uganda, and have
significant expertise in this method of enquiry (Musoke, Ekirapa-Kiracho, Ndejjo, &
George, 2015; Musoke, Ssemugabo, Ndejjo, Ekirapa-Kiracho, & George, 2018).
Participants
The participants were CHWs, purposively selected from those attached to SNHC
III, in order to capture a range of experiences. The aim was to have a balanced
number of males and females, and a diverse range of ages. Unfortunately since all
of the CHWs were recruited between 2009-2010 it was not possible to have a wide
range of years served as a CHW, however this would also have been part of the
purposive sampling strategy had this been possible.
In order to be eligible, CHWs had to be over the age of 18, actively practicing, and
willing to take part in the study. There were no exclusion criteria based on age,
language, gender, sex or tribe. Participants were assured of the right to accept or
refuse to take part in the study without consequence.
The Local Chairpersons (LC1s) from Seeta Nazigo and Makata villages in Nakisunga
subcounty were informed of the study by a staff member from Omni Med. They
mobilised individual CHWs within their respective villages to attend an initial
meeting at SNHC III. Eight VHTs attended the initial information session, which was
facilitated by two Ugandan Research Assistants (RAs) who hold bachelor level
university degrees. The initial information session lasted for three hours. CHWs were
informed of the specifics of the photovoice project and were given the opportunity to
ask questions. They were provided with an information sheet and a copy of an
informed consent form, both of which were written in the local language (Luganda).
Participants took the information sheet and informed consent form home, and returned
a signed copy to the research team at the end of the week if they were happy to
participate in the project.
Training Workshop
CHWs reconvened a week after this initial meeting. All eight CHWs who attended the
initial information session were in attendance. Signed consent forms were returned
and CHWs were given another opportunity to ask any questions to the RAs who
facilitated the meeting. The first two hours of the workshop were dedicated to
discussing the ethical aspects of photovoice, and training the CHWs on how to take
informed consent from members of the community they might photograph
(Devakumar et al., 2013; Harley, 2012). This was considered of vital importance,
given the potentially sensitive nature of the photographs that might be taken and in
keeping with best practice guidance for conducting photovoice studies (Hannes and
Parylo, 2014; McIntyre, 2003). It was explained that written informed consent was
considered the gold standard; however, in certain situations where this would not be
possible or acceptable, verbal consent could be gained (Devakumar, et al., 2013). In
such instances, CHWs were encouraged to document in their note books that consent
was granted for the photograph to be taken , and the reason as to why written consent
was not obtained. For example, if an individual granted permission for a photograph
to be taken, but was reluctant to sign a consent form due to personal reasons it would
be acceptable for the CHW to take the photograph as long as verbal consent was
granted and recorded in the CHW’s note book. CHWs were also given example
scenarios on how to take consent and were given the opportunity to practice doing this
in pairs. CHWs were then trained in the use of cameras, which lasted approximately
four hours. This was the first time that any CHW had used a camera. CHWs were first
shown the basic features of the camera, such as how to turn it on and off, and how to
charge it. They were then instructed on how to take photographs and use features such
as the flash setting and zoom, before working in pairs to practice capturing
photographs.
Following a group discussion facilitated by the RAs, CHWs reached a consensus that
they wished to capture issues they felt challenged them in their role as CHWs. This
topic was decided following a process of CHWs shortlisting topics they wished to
capture photographs of, and collectively ranking them in order of preference and
importance.
Materials
CHWs were supplied with a ZOOMK 2.7-inch display digital camera, a note book,
pens, and consent forms. CHWs also received a small monetary reimbursement ($5
USD) each time they attended a meeting in order to assist with transport costs.
Photovoice Assignment
During the photograph taking process, CHWs had the ability to contact the research
team at any time via mobile phone to discuss challenges or concerns they had. The
research team also visited the health centre at least twice a week to allow CHWs the
opportunity to meet face-to-face and raise any concerns or problems they faced.
Every two weeks, over a total period of six weeks, CHWs met at the health centre to
present and discuss their photographs with the research team. One-to-one interviews
were conducted in Luganda by the two RAs to discuss the perceived challenges
represented by the photographs. Both RAs had received formal training in conducting
semi-structured interviews by the study PI. Prior to the interviews taking place,
photographs were transferred from the cameras to the RAs’ laptops. Interviews were
explicitly framed to elicit and explore challenges faced by the CHWs and the
photographs were used as the focus of the discussion. The discussion for each
photograph was framed around the ‘SHOWED’ mnemonic; a commonly deployed
method in photovoice projects (Wang and Burris, 1997). As part of the framework,
five questions are asked about each photograph, including:
1. What do you See here?
2. What is really Happening here?
3. How does this relate to Our lives?
4. Why does this condition Exist?
5. What can we Do about it?
As part of the individual interviews, all of the photographs taken by the CHWs
being interviewed were discussed. The individual CHW was initially asked
whether or not the photograph related to the central theme of challenges they faced
as a CHW. Where photographs were not relevant to the central theme (e.g. a
personal photograph of the CHW with their family) they were not discussed. For
those that did relate to the central theme, an in-depth discussion was held
facilitated by the RA using the SHOWED method (Wang and Burris, 1997). In
partnership with the CHWs we conducted a visual thematic analysis on each of the
images. Each CHW was asked what each photo represented before we engaged in
an in-depth discussion around the photograph. Interviews were recorded using a
handheld audio recorder and then immediately transcribed and translated into
English. Each interview lasted between 40 minutes and 2 hours.
At the end of the individual interviews, a focus group discussion (FGD) was held,
where all of the relevant photos identified during the interviews were discussed. The
decision was made to discuss all of the relevant photos so as to avoid potential
selection bias by the researchers. The FGD was done in order to share the photographs
taken by each CHW, and to explore the opinions of the whole group as to whether or
not the issues raised by individual CHWs were considered as challenges by others.
All eight CHWs attended the FGDs and photographs were discussed among the
group, facilitated by an RA. Photographs were projected onto an empty wall at the
health centre using a low-cost projector. Finally, the RAs reviewed the notebooks with
the CHWs to capture any further relevant information, or to clarify any points of
ambiguity. At the end of FGD CHWs were asked to review all of the photographs and
group similar photographs into clusters (e.g. photographs relating to equipment
challenges all were put into one folder). This helped to guide the final thematic
analysis. In total the study lasted for six weeks.
Data Analysis
Interview transcripts were formatted for style consistency by the lead author in
Microsoft Word. They were then exported into NVivo (Version 12) for Mac
qualitative analysis software (QSR International Pty Ltd, 2018).
Transcripts were read several times, independently, by both the study PI and the one
of the RAs. The first read through aimed at ensuring accuracy of the typed transcript,
and that meanings of words and phrases had not been misinterpreted in the translation
process. The same researchers then re-read the transcripts a second time, following
Braun and Clarkes six-step framework for conducting thematic analysis (Braun and
Clarke, 2006).
Following this process, initial codes were generated relevant to perceived challenges
faced by CHWs. An open-coding framework was used, meaning the codes were
developed and modified throughout the process of reading the transcripts. Once an
initial set of codes was compiled by each researcher, these were discussed jointly and
a preliminary unified set of codes was determined. Each set of transcripts was read by
both researchers and codes were modified, generated, or changed throughout this
process. After generating the final set of codes, the researchers grouped these into
themes. Themes and coding nodes were then reviewed in NVivo to ensure they were
coherent, had supporting data, and to see if there were any potential sub-themes or
missing themes. The final themes were then refined and defined, which Braun and
Clarke describe as “identifying the ‘essence’ of what each theme is about” (Braun and
Clarke, 2006). A random sample of codes and example quotes were also checked by
the second RA to ensure consistency in code application.
Dissemination
Following the analysis process, key findings and photographs were shared in a
community-based workshop held at the local health centre. This was attended by
community members, CHWs, NGO officials, and District Health Officials. The
workshop involved using a projector to display key photographs onto a wall. These
photographs were selected by the CHWs based on the images they felt best illustrated
the key themes. The CHW who took the photograph made a brief presentation about
what it represented. A summary of suggestions was created in partnership with the
CHWs and distributed to District Health Officials and Omni Med programme
managers.
Ethical Considerations
The study received approval from The Uganda National Council for Science and
Technology (Number: SS 4723). Investigational Review Board (IRB) approval was
obtained from the Mengo Hospital Research Ethics Committee (Number: 114/07-18),
and The Department of Education ethical review board at The University of Oxford
(Number: ED-CIA-18-218). Written informed consent was obtained from all study
participants. All consent forms were provided in Luganda and were approved by both
IRBs prior to use. Finally, we obtained explicit written informed consent from
individuals appearing in the photographs which have been used in this publication.
Results
CHW Characteristics
A total of eight CHWs took part in the study. There was an equal split of males (n=4)
and females (n=4), all of who had served for eight years as a CHW. The majority of
CHWs were subsistence farmers who had undertaken secondary school education.
Full demographic details for each CHW can be found in Table 1. A total of 107
photographs were taken by the CHWs over the six-week period. 62 were relevant to
the topic of interest.
[Table 1 near here]
The following sections detail: (1) the themes related to challenges developed through
the photovoice analysis process; (2) the suggestions raised by the CHWs as to why
they feel such challenges exist; (3) suggestions raised by the CHWs as to how the
challenges could be addressed.
1. Challenges Identified Through the Use of Photovoice
1a. Infrastructure challenges
Several CHWs highlighted issues with private and communal infrastructure which
directly challenged the communities they served, and was thus perceived as a
challenge to their role. These ranged from poorly constructed homes, to
malfunctioning communal water sources. For example, one of the CHWs
photographed a house common to the area where the study took place, and cited that
the poor construction and lack of mosquito screens results in high rates of malaria in
this particular area (Figure 1).
[Figure 1 near here]
People who stay in such houses are trapped in some sort of a cycle…they keep
contracting and treating the disease (malaria) instead of preventing it. This is
caused by poverty. Everyone would love to sleep in a plastered house, with high
roofs and screens over the windows…but poverty. You know most people in the
villages are low-income earners. I am in charge of those people and now if they
keep suffering from malaria it challenges me. (Male CHW, 40 years old)
Other infrastructure related challenges related to communal services, such as
protected water sources (Figure 2). In recent years several protected water sources had
dried up, forcing residents to queue for several hours to fetch water. CHWs felt this
was a challenge to their role since certain individuals would prefer to use unprotected
sources as an alternative way of collecting water, which meant CHWs had to manage
the community members who fell sick as a result of water borne illnesses. There were
also unexpected consequences as a result of poorly functioning water sources,
including disruption to infant vaccination schedules:
[Figure 2 near here]
…water is essential when it comes to health, and that’s my biggest concern as a
CHW. Without clean water people are bound to fall sick since they are forced to
use water from unprotected water sources. (Female CHW, 44 years old)
The women who have children are mainly responsible for fetching water. If a
water source is drying up she might find herself in a difficult situation on a
Wednesday which is the day for immunisation. She needs the water, she needs
the immunisation, but of course she is more likely to prioritise water so the baby
misses out on being vaccinated. (Female CHW, 50 years old)
1b. Training and supervision challenges
The second subtheme concerning perceived challenges faced by CHWs was a lack of
appropriate on-going training and supervision to deal with the shifting disease burden
(such as the increase in non-communicable diseases (NCDs)). To illustrate this
challenge, many CHWs took photographs of community members who suffered from
NCDs such as diabetes, hypertension, and cancer, and stated they had not received
appropriate training to help address community members concerns, manage their
conditions, or give appropriate advice.
We appreciate the trainings we have had on child health, but we don’t get
enough in other diseases like diabetes, eye disease, cancer… and there is a
weakness in supervision. (Male CHW, 45 years old)
RA: Have you ever had training in how to deal with these (eye disease) issues?
CHW: We have never had any, but we need it. My knowledge on this is limited
so I can’t give proper advice. (Female VHT, 34 years old)
Similarly, CHWs lacked training on issues pertaining to mental health. This was
highlighted when one of the CHWs took a photograph of a man with post-traumatic
stress disorder, and stated:
Such a person is a threat in society so I have to be concerned. Those mentally ill
people are rapists! He may end up raping children on their way from school or
even women along the way. As a CHW I have to ensure he is treated to avoid
such scenarios from happening. (Male VHT, 40 years old)
When the issue of mental health was raised during a group discussion, several of
the CHWs commented that mental illness was perceived as a curse for evil deeds
in a previous life, or viewed as a divine punishment. All eight CHWs were
unaware; however, that there were different sub-types of mental illness:
RA: Have you ever had any training on mental health?
CHW: No. We have had training in other things, like HIV and TB, but not that.
RA: Do you know about the different types of mental illness?
CHW: Huh?...there are types? I just thought all mental illness was the same!
(Male CHW, 48 years old)
1c. Relationship challenges with staff from the formal health system
Another theme perceived as a challenge by the CHWs concerned relationships with
staff at the government health centre. One CHW stated that they had challenging
relationships with the staff from the health centre, due to the government health
workers failing to turn up to the health centre at weekends, which they reported to the
district councillor:
Earlier on we met the district councillor and told him about nurses not being at
the health centre during the weekends - a matter that he took seriously and
called for a meeting…Now they work on weekends, but for some time our
relationship with them was so tough as they knew we had reported them and
some failed to even speak to us (Female CHW, 34 years old)
Other CHWs indicated that health centre staff often failed to turn up for work, and as
a result the CHWs had stopped making referrals as they saw this as futile if there were
no staff at the health centre to manage the patients who attended:
Supervisors come (to check on the staff), but the few health workers they find at
the work station cover up for their colleagues who are not around…One may
defend another by lying to the supervisor that their colleague went for burial,
yet the person just decided not to show up. It’s a common problem and
frustrates us. Why would we refer a patient if there are no staff to see them?... It
impacts badly on our reputation with the people we serve (Female CHW, 50
years old)
1d. Equipment challenges
Several CHWs took photographs of equipment they were lacking to fulfil their role as
CHWs, including gumboots, mobile phones, umbrellas, means of transport, and water
bottles (Figure 3 a-d). Photographs of these items were taken with the permission of
other community members who owned them.
[Figure 3 near here]
For example, one role CHWs have is to check the status of pit latrines in the
households they are responsible for. Yet, many mentioned how passing through such
areas without protective footwear was unhygienic. They therefore took photographs
of gumboots to represent the protective footwear they lacked, but wished to own.
Others cited the challenge of the long distances between the homes they serve, and the
need for provision of transport such as bicycles or a communal motorbike (boda-
boda) to assist them in completing more home visits. Interestingly, the government
provided bicycles to the CHWs in 2002; however several of them fell into disrepair
and are no longer in use. Some CHWs blamed the government for allowing this to
happen, stating that they purchased poor quality bicycles and misappropriated the
remaining money. Others, however, felt that because the bicycles were distributed
freely, many CHWs failed to maintain or take care of them due to lack of perceived
ownership:
To some, who received the bicycles for free from the district, they don’t care
because after all it was given for free, they didn’t incur any cost themselves, so
why look after it? (Male CHW, 45 years old)
Several CHWs also felt a major challenge was a lack of medications and properly
functioning equipment. One of the CHWs had been provided with a medicine box by
the Ministry of Health in 2002, however; had not been supplied with medicine since
2004 (Figure 4). The box now lies unused in his home.
[Figure 4 near here]
People always ask me why we don’t receive medicine, yet we got this box. It
affects me because we are the immediate health workers who have to give first
aid to the people, so it frustrates me and them when there is nothing to give!
(Male CHW, 67 years old)
2. Underlying reasons for the challenges identified by the CHWs through the
photovoice study
As part of the individual interviews and FGD, we explored the reasons as to why the
CHWs felt the challenges they identified exist. The underlying reasons for the
challenges were attributed to two main groups; the government and broader system in
which the CHWs work, and the supporting NGO.
2a. Government and system level factors
There was a strongly held belief among many of the CHWs that the government were
to blame for the challenges they faced, especially regarding the lack of medicines at
the health facility. During a group discussion one of the senior CHWs stated:
I blame the government for all that. I remember very well in Obote’s regime
every health centre used to treat all kinds of diseases freely! Medicine was there
in plenty.... Now corruption and theft are the order of the day! Can you imagine
they stole the money meant to buy Anti-retroviral therapy (ART) for HIV and
AIDs patients? If they stole that what of that meant for diabetes patients?
Developed countries give us so much money for ART but it keeps getting stolen
by the government officials. (Male VHT, 45 years old)
Others cited a lack of empathy from those in ministerial or positions as to why
challenges in a rural area such as Seeta Nazigo had not been addressed:
When their children fall sick, they take them to expensive private health centres,
so they don’t even feel touched about the person who can’t afford. For example,
you never see the children of Government officials in government run health
centres. (Male CHW, 45 years old)
Nobody cares about these challenges apart from us at the grass roots who are
facing them. We are the people whose opinions don’t matter. The government
don’t care. They sometimes come, hear about our problems, and then do
nothing. They show their face like it is a requirement to check a box, but don’t
really care. (Female CHW, 34 years old)
2b. The supporting NGO
Some CHWs attributed their challenges, especially those regarding on-going training
and supervision, to the supporting NGO. For example, they felt the feedback they
received on their performance was irregular and infrequent, and that the training
which they were responsible for delivering did not reflect the diseases encountered by
the CHWs:
Personally, I put the blame on our supervisors of Omni Med. They have not
taken time to supervise and also find out what is taking place in the villages and
how the CHWs are working, the transport means, and how the CHW
communicates with the people. You may give your concerns but the year goes
by without even getting feedback. (Male CHW, 45 years old)
Omni Med need to provide us with medications and train us in different things.
We get the same training all the time. (Male CHW, 40 years old)
3. Suggestions made by the CHWs for addressing challenges identified
through the photovoice study
Various suggestions were raised by the CHWs as to how the challenges could be
addressed. These included roles for the government, the NGO, and individuals (such
as the CHWs themselves).
3a. Government roles
The majority of the CHWs suggested the government had an important role to play,
through the provision of medicine at the health facilities, increasing the number of
staff at rural health centres, and improving the quality of communal infrastructure.
It all goes down to the government. They must provide medicine for all types of
diseases so that all patients can benefit. (Male CHW, 40 years old)
The government, through the Ministry of Health, should send more health
workers to coordinate with the VHTs and CHWs – we are overwhelmed with
patients in this area and can’t deal with them alone. (Female CHW, 44 years
old)
The government should improve the quality of the roads so that people can
move easily when they need treatment. (Male VHT, 67 years old)
However, despite these suggestions, tensions were raised when discussing the role of
the government in addressing the challenges. Some CHWs felt that even when they
highlighted challenges to government officials, many did not listen or respond to
them, citing a lack of respect for workers at the village level and self-interest as
reasons why:
My efforts as a CHW would be to focus on applying pressure to the
government. But we have tried this, and even if you approach them after
discussing the issues, they don’t do follow up. The moment you leave their
offices they start doing their other things… They undermine us, the CHWs, they
don’t take us seriously. Some say we don’t know English and we can only write
in Luganda…so it appears useless to write to them or approach them. (Male
VHT, 45 years old)
We want the government to help but they claim they have no money… but we
know the do since they buy expensive cars for the members of parliament and
giving money to those who support constitutional amendments. You just cannot
trust the government. (Female CHW, 42 years old)
3b. NGO roles
There were calls from CHWs for their supporting NGO to play a more critical and
involved role in addressing their challenges. Instead of just delivering trainings on
disease recognition, management and prevention, CHWs wanted them to play a
greater role in advocacy.
Omni Med can write to those who are responsible, because as a registered
organisation in direct contact with the government it can be heard and feedback
more easily than a CHW... Another thing that I think that must be done is that
when Omni Med comes here it just brings training, but they need to understand
more about the issues at the health centre asking questions like is the medicine
enough, are the facilities working well etc. (Male CHW, 45 years old)
Omni Med should convince the government to provide diabetes medicine freely.
I am sure they will listen to them. (Male CHW, 40 years old)
3c. CHW roles
Although conveyed less strongly than potential roles of the government and NGO,
some CHWs highlighted their own potential role in addressing some of the challenges
they identified, by taking on the role of community advocates and activists:
What I can do is what I am doing right now. Raising awareness! If I weren’t
responsible enough, I would either not have bothered finding out the problem or
just kept quiet after finding out. (Male CHW, 45 years old)
I think we can address some of the challenges by speaking up, for example the
way I am doing now. Imagine if all us CHWs talk about it! Then it would be
considered a serious concern. (Female CHW, 34 years old)
Others, however, felt they were unable to affect change, or did not have the time given
their own personal commitments alongside their volunteer work as a CHW:
As people at the grass root level we cannot do much to effect change. I would
love to help but I also have my own responsibilities. (Male CHW, 40 years old)
Discussion
By exploring and framing challenges faced by CHWs through the use of photovoice,
unique insights were obtained into the complexities of PHC delivery in Mukono,
Uganda. Challenges identified by the CHWs included poor infrastructure, inadequate
training, challenging relationships with staff from the formal health system, and a lack
of appropriate equipment. Resulting discussions revealed that CHWs mainly blamed
the government and supporting NGO for these challenges, and suggested
opportunities to address the challenges which will a require coordinated and
multisectoral response.
Several CHWs highlighted problems with the structure and design of local houses,
which they felt resulted in higher rates of malaria among the community members
they served. In other settings, such as Kenya, working with designers and engineers to
modify ceilings of traditional houses has proven to be one low-cost and acceptable
way of reducing exposure to malaria vectors, and would warrant exploration in this
context (Atieli, Menya, Githeko, & Scott, 2009). Similarly, some CHWs highlighted
that poorly maintained water sources had resulted in community members being
forced to use alternative, unsafe sources of water, thus resulting in higher rates of
water borne illness.
Addressing the social determinants of health and improving the broader contexts in
which communities live, for example their homes and water sources, are important
ways of improving community health. One way to achieve this could be to reshape
CHW training to encompass the social determinants of health, and to encourage
CHWs to act as community advocates. This concept of “community-oriented primary
care” is not new, and has successfully enacted in the past (Mullan and Epstein, 2002).
For example, after receiving training in advocacy and leadership skills, a collaborative
of CHWs in Arizona were successfully able to engage their community to make
positive systems and environmental change to improve their households and lobby
policy makers to address their living environment (Ingram et al., 2014). In the
Ugandan context NGOs could play an important role in supporting the development
and holistic training of CHWs to fulfil this role by adopting a role as stewards to
ensure promotion and advocacy for relevant provision of community based health
services, and championing the needs of the CHWs they support (Delisle, Roberts,
Munro, Jones, & Gyorkos, 2005).
The second challenge, regarding a lack of training and on-going supervision to
address the changing burden of disease, has been cited across other CHW
programmes in Uganda (Ojo et al., 2017). This potentially reflects a weakness in the
Ugandan CHW training model, which to date has largely focused on maternal and
child health issues and infectious diseases, and has not been updated to reflect the
epidemiological transition that the country is going through. It is therefore important
that CHW training is updated to reflect the changing and complex disease burden, and
that vertical training approaches are avoided. This is further supported by the
aspirations expressed by the CHWs in this particular district to increase their scope of
practice in order to reflect the disease burdens they are expected to manage.
Furthermore, thought should be given to how such training is delivered, in an on-
going fashion. mHealth strategies have been suggested to have a potential role in
supporting the delivery of ongoing training, and have previously been demonstrated to
be feasible with a similar cohort of CHWs in the Mukono District (O'Donovan,
Kabali, et al., 2018). Ensuring that such strategies are co-designed with CHWs and
take local resource constraints into consideration are likely to facilitate in their uptake
and sustainability, especially as they are scaled (Winters, O'Donovan, & Geniets,
2018).
Another issue facing CHWs involved relationship challenges with other staff
members from the formal health system. Tensions between CHWs and facility-based
health workers in Uganda have been documented previously in a study conducted in
Luwero District (Musinguzi et al., 2017). In this study CHWs demanded preferential
treatment for the patients they referred to government health centres, which resulted
in tensions arising between the facility-based staff and CHWs. In addition, the authors
cited minimal communication between the two cadres as exacerbating tensions.
Finding a way to improve the working relationship between CHWs and the facility-
based health staff is of vital importance, since the success of CHW interventions
“depends on high levels of community involvement and participation and a positive
relationship between the CHW programme and the formal health system” (Grant et
al., 2017). This is also an important challenge to highlight, since advocates of CHW
programmes often state the benefits of CHWs could be in linking the community to
the formal health system (Haines et al., 2007).
However, unless functioning relationships between key stakeholders exist, improving
links to the formal health system via CHWs can prove extremely challenging, and
even damaging to community perceptions of CHW programmes if referrals fail
(Musinguzi, et al., 2017). Addressing this particular challenge could be an important
role for a new cadre of paid health workers, known as Community Health Extension
Workers, who were initially expected to be deployed in Uganda in 2019 (O'Donovan,
Stiles, et al., 2018). It is hypothesised that one of their key responsibilities will be to
supervise CHWs and to act as links between the government health facilities and the
community.
The final challenge, regarding a lack of equipment, is common findings across
several CHW programmes in different contexts (Jaskiewicz and Tulenko, 2012;
Oliver, Geniets, Winters, Rega, & Mbae, 2015). It is clear there is a pressing need
for the District Health Office and Ugandan Ministry of Health to ensure CHWs
have appropriate supplies of medications and working equipment. It is not enough
to simply train CHWs in the recognition of disease and community concerns; it is
vital to also provide the necessary and proper equipment in order for them to
manage the issues they identify. This holistic, multifaceted approach to
strengthening CHW programs has been suggested in the 2018 WHO guidelines to
optimise community health worker programmes to achieve maximum impact
(Cometto et al., 2018). This includes supporting CHWs with appropriate
remuneration, career advancement, and on-going support. It should be noted that
the criticisms by the CHWs are only reflective of our sample, and that with a wider
sampling strategy, different perspectives may have been uncovered (including
debates regarding the role of the government locally.
Study contributions and limitations
In terms of how this study contributes to the wider literature, it adds to the relatively
narrow body of existing evidence regarding the role of photovoice with CHWs, given
that a 2018 systematic review identified only six studies utilising photovoice with
CHWs (O'Donovan, Thompson, et al., 2018). This is important because although
challenges faced by CHWs in Uganda have been explored in the literature before
(Kimbugwe, et al., 2014), this has largely been done using surveys or semi-structured
interviews. Such methods have been criticised in the past for only providing “a partial
insight into the view and concerns of CHWS” (Smith and Blumenthal, 2012).
In addition, challenges are also context dependant – for example challenges faced
by CHWs in Mukono District are likely to be different to those in other regions of
Uganda, given the difference in supporting providers and cultural factors. Similarly
challenges faced by volunteer CHWs in Uganda are likely to be highly different to
those faced in Liberia for example, where CHWs are a paid cadre. Understanding
these contextual challenges is important as the global evidence base on CHW
programmes continues to grow. As such this paper answers the call from
researchers such as Scott et al. who have suggested the need to expand the
evidence base for CHW programmes with context-specific methods (Scott et al.,
2018). These close-to-the-ground findings are also timely given the planned
changes to community health delivery in Uganda and the planned introduction of a
new cadre of Community Health Extension Workers (O'Donovan, Stiles, et al.,
2018). By highlighting key challenges from the perspectives of current CHWs, it
may help policy makers and practitioners responsible for reshaping the Ugandan
CHW programme ensure responsiveness to the needs of those delivering PHC on
the front line.
In terms of limitations, the use of photovoice was not without its challenges. Although
the CHWs reported that the majority of people were happy to sign a consent form and
have their photograph taken, a small minority were resistant, even after the process
was explained to them and their anonymity guaranteed. This was out of fear that the
photographs might be misused, or result in government persecution against them. One
CHW stated:
Some of them had never seen anything like that (a camera) their entire life. It’s
almost like they were afraid of being a part of something they had never been a
part of before. Others felt like we were going to exploit their photos for our own
benefit… You know these days they hear stories from the media about the
government arresting people and people don’t like having their image taken.
(Female CHW, 34 years old)
Another stated that some community members did not want to sign consent forms, out
of fear of subsequent reprisals:
They just fear signing documents, they think something wrong may happen to
them after signing. I tried to explain but they did not understand me. (Female
CHW, 50 years old)
Other CHWs found that some people did not want their photograph taken as they
were tired of false promises from previous research projects:
They say “Don’t waste my time, we are tired of those things… there is no
change, just promise…it’s the same story.” (Male CHW, 45 years old)
In contexts such as Uganda where there are levels of suspicion and resistance to
having a photograph taken, photographic methods of enquiry may not be culturally
acceptable to certain members of the population. Second, although the majority of
individuals provided informed written consent, some participants did not want to sign
a consent form. Alternative methods of obtaining consent, such as oral consent should
therefore be adopted. It is also important to note that some of the CHWs felt the initial
period of two weeks to collect photographs was too short, and required an additional
month to complete the study in a satisfactory manner. We would therefore recommend
that other researchers ensure appropriate time is allocated for capture and discussion
of photographs. Two CHWs faced technical issues related to the use of the camera,
including freezing and issues with the formatting of the memory card, however these
were quickly resolved following meeting with the RAs.
Finally, although public dissemination meetings have been suggested as one
important way to attempt to engage with key policy stakeholders and share
findings (Liebenberg, 2018), how the findings are acted upon and addressed in a
meaningful way remains a key challenge. Despite inviting several government
officials to the community workshop, only one District Health Official was in
attendance. It is therefore not possible to claim that our photovoice project was
able to truly “empower” the CHWs since true empowerment involves engagement
and change of complex support structures, as well as the resources to bring about
change; something which our photovoice study, in isolation, cannot address.
Critically by simply taking part in the process of photovoice, CHWs were not
necessarily able to enact change themselves. Rather, it provided the opportunity to
reflect more deeply on the issues challenging their daily work. We were unable to
capture examples of participants expressing advocacy outside of the study,
although this may have taken place. In order to capture such examples, a longer
observation period in the community would be required, with this as a specific
evaluation aim.
Reflexivity statement
The direct research team interacting on a daily basis with the CHWs consisted of a
white British PhD researcher (who was the Principal Investigator) and two Ugandan
graduates acting as RAs.
Although some commonalities were shared between the research team and the
CHWs (for example two of the RAs were Ugandan and from Mukono District),
other aspects of our identities were very different (for example none of the direct
research team were CHWs). Similarly, all of the research team had achieved a
minimum of a bachelors level qualification, whereas the majority of CHWs had
stopped formal education after secondary school. In addition, all of the direct
research team were employed in full-time, relatively well paying jobs in either the
NGO or academic sector. It is not fully clear how these dynamics were perceived
by the CHWs, but it is important to note that our positions might have influenced
the interactions with the CHWs, and the answers they provided in the one-to-one
in-depth interviews. For example, one of the RAs stated:
Because a mzungu (a white person) was involved in the project, VHTs might
have been more fearful of giving truly honest answers. This might have been
out of fear that if they provided an answer you did not agree with you might
have dropped them from the project.
Despite the aim of a participatory process, the direct research team had relative
privileges over the CHWs which made discussing some of the challenges they
faced uncomfortable at times. For example, one of the major challenges identified
by the CHWs was access to reliable transport, something which the research team
did not face as we owned a private vehicle. Therefore, despite our best efforts to
co-construct the narrative through joint interpretation of the data during the
individual interviews and FGD, it is very possible that the different identities and
experiences of those involved in the research study resulted in a narrative which
may not truly reflect all of the challenges perceived by the CHWs.
Finally, the position of the white British researcher as the PI could be considered
potentially problematic in this context. In the past white researchers have come to
this particular community, taken photos and then used the photos in resulting
publications, with the community seeing no benefit from the process. One of the
Ugandan RAs notes:
Some people strongly believe mzungu currently use manipulation to steal from
Africa instead of the initial direct theft that existed in the colonial era. They
think mzungu take their photos and use their stories to fundraise for money that
they instead use for their own selfish gains and give a small percentage to them
if at all.
This view has been echoed by other researchers, such as Chisomo Kalinga, who
states that there is often concern amongst communities about “their knowledge
being used by Westerners to enrich themselves, whilst they remain poor” (Kalinga,
2019). Understanding and openly addressing such concerns from the outset could
be an important part of the community engagement process for similar projects in
the future.
Conclusion
The use of the photovoice in this study helped uncover unique insights into the
challenges faced by a group of CHWs in Nakisunga sub-county of Mukono
District, Uganda. The photographs and resulting discussions revealed the diverse
challenges faced by CHWs, ranging from a lack of appropriate training and
equipment, to complex socio-political challenges. It is important to note that
although photovoice was generally perceived as a feasible methodology to explore
daily challenges from the perspectives of CHWs, a small number of community
members expressed concern with how their images might be used due to negative
past experiences of non-native researchers capturing their images without gaining
their permission. Future work should draw upon the challenges identified in this
study, and explore ways in which they can be addressed to contribute to the overall
strengthening of the Ugandan PHC system. This can only be done by engaging key
stakeholders from multiple domains. It also represents a renewed and important
role for NGOs to act as community advocates, by speaking truth to power and
championing the needs of frontline health workers, such as CHWs, to deliver
quality PHC, commensurate with the needs of the communities they serve.
Acknowledgements
We wish to thank Omni Med for their support in establishing the study and advocating
for the research team during community meetings. We wish to thank the CHWs for
participating in this study and sharing their invaluable insights, and the community
members for their willingness to take part.
Declaration of interest statement
This study was dually funded by an unrestricted grant from The British Medical
Association and The Economic and Social Research Council secured by JOD. JOD
receives a student stipend from the ESRC. Neither funding organisation played a role
in the study design, data collection and analysis, decision to publish, or preparation of
the manuscript, and only provided financial support in the form of procurement of
research materials.
Data sharing statement
The data that support the findings of this study are available on request from the
corresponding author, JOD. The data such as individual photographs are not publicly
available due to information that could compromise the privacy of research
participants or community members who took part in the study.
Authors contributions
Conceptualisation: JOD, NW, DM, CS. Data Curation: JOD, RH, ASN. Formal
Analysis: JOD, RH, ASN. Funding Acquisition: JOD and NW. Investigation: JOD,
RH, ASN. Methodology: JOD, NW, DM. Project Administration: JOD. Resources:
JOD, NW. Supervision: NW and DM. Writing – Original Draft Preparation: JOD, RH,
ASN. Writing – Review and Editing: JOD, NW, DM, RH, ASN, CS.
References
Table(s) with captions
CHW Sex Age Years of
Education
Highest
level of
education
Job Number
of years
as CHW
Number of
households
served
CHW1 F 50 9 Some
secondary
Farming 8 50
CHW2 F 42 12 Some
secondary
Farming 8 38
CHW3 F 44 9 Some
secondary
Peasant 8 30
CHW4 M 45 7 Some
primary
Builder,
farmer
8 120
CHW5 M 45 11 Completed
secondary
Farmer 8 30
CHW6 M 67 8 Some
primary
Farmer 8 35
CHW7 F 34 9 Some
secondary
Farmer 8 68
CHW8 M 40 11 Some
secondary
Peasant 8 35
Table 1. CHW demographic details. A table outlining the demographic details of the
CHWs involved in the study.
Figures
[See separate file attachments]
Figure Captions (as a list)
Figure 1. A poorly constructed house. A house common to the area where the
study took place. Note the lack of mosquito screens across the windows, vents and
cracks in the cement.
Figure 2. A poorly functioning water source. A women and her child wait in line to
fill jerry cans at a poorly functioning protected water source.
Figure 3 a-d. Missing equipment. Equipment CHWs lack which they felt would help
facilitate their work; (a) Mobile phone; (b) Gumboots; (c) Motorbike; (d) Backpack.
Figure 4. No medicines here. A male CHW holding a medical supply box provided
by the Ministry of Health to CHWs in 2002, but which has not been stocked since.
