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PNEUMONIA DIAGNOSTICS PROJECT “Pneumonia Diagnostics Project: A study to evaluate and identify improved tools for the measurement of respiratory rate and oxygen saturation for the diagnosis of pneumonia
by community health workers and first level health facility workers”
RESEARCH STAGE 1 REPORT
Authors:
Dr. LENA MATATA, PROJECT MANAGER
SAM B.T OKELLO, RESEARCH OFFICER
Malaria Consortium
Submission date: December 2014
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Table of Contents
Table of Contents ................................................................................................................................................................ 2
Abbreviations ...................................................................................................................................................................... 3
Acknowledgements ............................................................................................................................................................ 4
Abstract ................................................................................................................................................................................ 4
Introduction ......................................................................................................................................................................... 5 Study background ............................................................................................................................................................................. 6 Study aims and objectives ............................................................................................................................................................... 7
Methods ............................................................................................................................................................................... 7 Study design ....................................................................................................................................................................................... 7 Study Site ............................................................................................................................................................................................ 8 Study population ............................................................................................................................................................................. 10 Data collection ................................................................................................................................................................................. 12 Data analysis .................................................................................................................................................................................... 14
Results ................................................................................................................................................................................ 14 Theme 1: CBDs Knowledge and Management of Pneumonia in the Local Health Situation ............................................ 14
Felt Need, Common Illnesses..................................................................................................................................................................... 14 CBDs Knowledge on Identifying Signs and Symptoms of Pneumonia ................................................................................... 15 CHWs Accessibility, Community Engagement in iCCM and Community Treatment Options ...................................... 17 Availability of Diagnostic Tools and Adequate Supply of Antibiotics .................................................................................... 19
Theme 2: Current Constraints in Pneumonia Care at the Community Level ....................................................................... 20 Forgotten iCCM Guidelines ...................................................................................................................................................................... 20 Constraints with Availability of Diagnostic Tools and Adequate Supply of Antibiotics ................................................. 21 Device Use Constraints .............................................................................................................................................................................. 22 Need for Refresher Training ................................................................................................................................................................... 23
Theme 3: Ideal Tool Characteristics for Pneumonia Diagnosis: ............................................................................................. 24 Responses on Ideal Tool Characteristics when considering, Device Usability .................................................................. 24 Ideal Tools Designs ..................................................................................................................................................................................... 25
Discussion ........................................................................................................................................................................... 27 Communication implications ........................................................................................................................................................ 27 Study limitations ............................................................................................................................................................................. 29 Conclusion ........................................................................................................................................................................................ 30
Appendices......................................................................................................................................................................... 30
Appendix 1: Stage 1 Research FGD Participants ......................................................................................................... 31
Appendix 2: FGD Information Sheet (English and Dinka Translation)..................................................................... 31
Appendix 3: Stage 1 Research FGD Participants Responses ..................................................................................... 36
Results ................................................................................................................................................................................ 36 Theme 1: CBDs Knowledge and Management of Pneumonia in the Local Health Situation ............................................ 36 Theme 2: Current Constraints in Pneumonia Care at the Community Level ....................................................................... 52 Constraints with availability of diagnostic tools and adequate supply of antibiotics ....................................................... 57 Theme 3: Ideal Tool Characteristics for Pneumonia Diagnosis: ............................................................................................. 66
Appendix 4: Preliminary Results Summary for Stage 1 Research ............................................................................ 72
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References ......................................................................................................................................................................... 76
Abbreviations
ARI Acute Respiratory Infections
BRAC Bangladesh Rural Advancement Committee
CBDs Community Based Distributers
CDDs Community Drug Distributers
CHDs County Health Departments
CHWs Community Health Workers
County Health Departments
FGD Focus Group Discussion
iCCM integrated Community Case Management
iNGOs international non-governmental organisations
IRC International Rescue Committee
MoH Ministry of Health
NBEG Northern Bahr El Ghazal
PHCC Primary Health Care Centre
PHCU Primary Health Care Unit
PSI Population Services International
SMoH State Ministry of Health
SS South Sudan
SSHHS South Sudan Household and Health Survey
UMR Under-five Mortality Rate
WHO World Health Organization
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Acknowledgements
The Pneumonia Diagnostics Project is funded by the Bill and Melinda Gates Foundation.
Thank you to the integrated Community Case Management (iCCM) Community Health Workers who are
referred to as Community Based Distributer’s (CBDs) and their supervisor’s in Aweil West and Aweil Centre,
Northern Bahr El Ghazal-South Sudan, iCCM Malaria Consortium team and the Ministry of Health - Republic of
South Sudan, State Ministry of Health, Northern Bahr El Ghazal and County, Payam officials in Aweil West and
Centre, Northern Bahr El Ghazal.
Abstract
Malaria Consortium conducted a formative research study amongst iCCM Community Health Workers. The
aim was to gain an understanding of their current experiences diagnosing the signs of pneumonia in children
and specifically relating their experiences in using diagnostics devices to capture their current constraints and
enablers in diagnosing pneumonia at the community level and suggestions on characteristics of a tool that
could improve the accuracy of pneumonia diagnosis and which will also be acceptable to the caretakers.
The study was conducted using Focus Group Discussions (FGDs) with 24 iCCM CBDs, who are referred to as
Community Based Distributer’s (CBDs) or Community Drug Distributers (CDDs) in Aweil West and Aweil Centre
counties in Northern Bahr El Ghazal, South Sudan. The data was collected by using both field notes and audio-
recorders; this data was used to write fair notes and transcribed into transcripts that were analysed using
NViVo software.
The iCCM CBDs (N=12 of 24) mentioned that pneumonia was the most common childhood disease in the
community, whereas malaria and diarrhoea was mentioned by 3 CBDs each. The FGD data found that a good
number of the CBDs are able to correctly identify the common signs and symptoms of pneumonia, but it was
also clear from the FGD that a number of the CBDs struggle with both the identification and management of
pneumonia using the iCCM guidelines and using the tools provided, the counting beads and ARI timer.
The iCCM CBDs mentioned that they experience challenges with the current pneumonia devices; for example
the devices are not long-lasting, are not easy to use and therefore they are not always confident in making
decisions on whether to treat a child with antibiotics for pneumonia.
The iCCM CBDs felt that it is possible to improve on the current pneumonia diagnostics devices, by having
devices that are less cumbersome to use, devices that are not easily damaged and when the devices are
powered by use of a battery, the battery ought to be long-lasting, they also preferred automated devices that
read and display the child’s breathing rate.
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Introduction
Pneumonia is the number one infectious killer of children under age 5 globally. In children under five years of
age, the disease accounts for 1 million deaths annually, representing 15% of all under-five annual worldwide
mortality (WHO 2014). Many deaths result from late care seeking and inappropriate treatment due to lack of
caregiver awareness of pneumonia symptoms and misdiagnosing symptoms as malaria (UNICEF/WHO 2006).
While caregivers may recognize rapid breathing in a coughing child, it does not always prompt care-seeking
actions, resulting in delays and development of more severe disease (Kallander, Tomson et al. 2006, Kallander,
Tomson et al. 2006, Kallander, Hildenwall et al. 2008). Children who are taken for treatment late are at risk of
developing severe pneumonia and the inability of health care workers to adequately recognize danger signs,
which indicate that the child needs urgent referral to a higher level of care, leads to the death of many
children (Bojalil, Kirkwood et al. 2007).
In South Sudan, Infant and under-five mortality rate (UMR) are very high; at 75 and 105 deaths per 1000 live
births, respectively (SSHHS 2010). Pneumonia is one of the major causes of infant and children under five,
morbidity and mortality in South Sudan. The other major causes of infant and under-five morbidity and
mortality are malaria, diarrheal diseases, and malnutrition, and they are also common co-infections in a child
with pneumonia (MoH-GOSS 2011).
On average children less than five years of age in South Sudan, get infected with an acute respiratory tract
infection once every 1-2 months (MoH-GOSS 2009), which is an equivalent of 6-12 attacks per child under 5
years of age in a year, the 2010 SSHHS showed that 19% of children under five had had symptoms of
suspected pneumonia in the last two weeks, which is a substantial increase from 14% seen in the same survey
conducted in 2006 (MoH-GOSS 2006, MoH-GOSS 2011). This frequency of pneumonia morbidity is significant
as children under 5 years of age make up 16% of the total population of South Sudan (MoH-GOSS 2011, SSNBS
2011).
The 2010 SSHHS found that 47.2 per cent of mothers’ in South Sudan, had knowledge on the key danger signs
of pneumonia which is an improvement from 24.5 per cent in the 2006 survey (MoH-GOSS 2006, MoH-GOSS
2011); the target for South Sudan is that 60 per cent of mothers by 2015 should have knowledge of the danger
signs of pneumonia. It was also found that 47 per cent of children with suspected pneumonia got care from an
appropriate health care provider and 33 per cent were treated with antibiotics (MoH-GOSS 2011), the Global
Action Plan for Prevention and Control of Pneumonia targets for these two indicators is 90 per cent (IVAC
2012).
The risk factors for childhood pneumonia in South Sudan are; weaning of children before completing 6 months
of exclusive breastfeeding, protein energy malnutrition, micronutrient deficiencies especially vitamin A and
zinc deficiencies, complication after malaria illness, incomplete vaccine coverage against common illnesses,
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children being exposed to cooking smoke as more than 99% of households were found to use solid fuel for
cooking (MoH-GOSS 2011), living in cold, highland areas and in over-crowded conditions (MoH-GOSS 2009).
One of the strategies by the SS MoH to combat high mortality rates in children under 5 years of age in South
Sudan is the community based child survival program, and this includes ‘integrated community case
management (iCCM) as outlined in the national guideline for “community based management of malaria,
pneumonia and diarrhoea” (MoH-GOSS 2009). The iCCM program in South Sudan has been implemented since
2005, with more than 9 000 CBDs in 30 of the 79 counties of South Sudan, with support to the MoH-SS from
international non-governmental organisations (iNGOs) including Malaria Consortium (Olivi , MoH-GOSS 2009,
DFID 2013, Malaria-Consortium 2013). The national guideline outlines the approach for the recruitment of
CBDs, who are volunteers, selected by the community, and are trained in the elements of the community
health package for malaria, diarrhoea and pneumonia.
The selection of the CBDs is done through a consultative process by village leaders, chiefs and members of the
community. Information from the iNGOs indicates that majority of CBD volunteers are females, for example at
the time of the FGDs, Malaria Consortium was working with 1 676 CBDs and of these 1 111 (66.3%) were
female. The following iNGOs also report that a higher number of the CBD volunteers they work with are
female; Population Services International (PSI), International Rescue Committee (IRC), Save the Children and
Bangladesh Rural Advancement Committee (BRAC), the CBD volunteers working with BRAC are all female
whereas IRC indicates that majority of their CBDs are mothers (MoH-GOSS 2009, Matata 2014). Majority of
the CBD volunteers are illiterate, therefore their training is practical using demonstrations and role plays,
(MoH-GOSS 2009). In a study assessing the use of counting beads amongst CHWs in South Sudan, Uganda and
Ghana, 100 per cent of the fifty nine CBD participants from South Sudan, and who were working with IRC and
Save the Children were illiterate. The low literacy rates have led to innovative training materials; Malaria
Consortium for instance, has developed pictorial learning job aids (Malaria-Consortium 2013).
Study background
As per the World Health Organization (WHO) guidelines for Integrated Management of Childhood Illnesses
(WHO 2013) and for Integrated Community Case Management (WHO/UNICEF 2012), diagnosis of pneumonia
at lower level health facilities and in the community is largely presumptive and based on increased respiratory
rate (RR) in children with cough or difficulty in breathing.
A number of counting aids have been developed to facilitate low literate CBDs to assess and classify symptoms
of pneumonia. CBDs are trained to assess, classify and treat children with pneumonia, malaria and diarrhoea
using the WHO protocol. The recommended timing device for assessment of fast breathing to classify
pneumonia is the ARI timer developed by UNICEF. During training of CBDs in South Sudan, Northeast Uganda
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and Ghana, any timing device, which required health workers to count breaths, was deemed inappropriate
(Noordam, Barbera Lainez et al. 2014). As a result, a counting device in the form of beads was developed.
More recently, and partly as a response to the scale-up of large ICCM projects in Sub-Saharan Africa and South
Asia, new pneumonia diagnostic support aids have been developed by industry, academia and other partners
to improve the accuracy and effectiveness of diagnosing pneumonia in resource-poor contexts (UNICEF 2013).
Wider use of diagnostic support aids for pneumonia and user-friendly pulse oximetry (POx) devices are
expected to contribute to improved, more accurate diagnosis and classification of pneumonia, thereby
yielding improved treatment, reduced margin of error and better sensitivity and specificity.
A priority need is therefore the clinical evaluation of these new technologies compared to the UNICEF ARI
timer, including an assessment of the acceptability and usability of these new approaches from the
perspective of the CHW, clinical staff working in first level health facilities, as well as the caregiver of the child.
Malaria Consortium is implementing an eighteen-month grant to carry out operational research on
pneumonia diagnostic tools in Cambodia, Ethiopia, Uganda and South Sudan.
Study aims and objectives
Malaria Consortium conducted a formative research study amongst iCCM Community Health Workers. The
aim was to gain an understanding of their current experiences diagnosing the signs of pneumonia in children
and specifically relating their experiences in using diagnostics devices to capture their current constraints and
enablers in diagnosing pneumonia at the community level and suggestions on characteristics of a tool that
could improve the accuracy of pneumonia diagnosis and which will also be acceptable to the caretakers.
The study objectives were based on three themes to identify the current constraints and enablers amongst
iCCM CBDs in regards to:
Community Health Worker’s knowledge and management of pneumonia in the local health situation
Community Health Worker’s experiences in detecting the signs and symptoms of pneumonia and
managing children with pneumonia at the community level
Community Health Worker’s views on ideal tool characteristics for pneumonia diagnosis
Methods
Study design
This study is the stage one of six stages for this project. Stage one data was collected in May and June 2014,
through formative research method, through three Focus Group Discussions, with 8 iCCM, Community Health
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Workers at each FGD. The CBDs are referred to as Community Drug Distributers (CDDs) or Community Based
Distributer’s (CBDs), working with the Malaria Consortium, iCCM program in Aweil West and Aweil Centre
Counties in Northern Bahr El Ghazal state (NBEG), South Sudan (see Map 1).
Map 1. Map of Northern Bahr El Ghazal Counties, South Sudan
Study Site
Northern Bahr el Ghazal is one of the 10 states in South Sudan. It is located North-West of the country and
covers a total area of 30 543 square km (SSNBS 2011).
The total population of NBEG is 721 000 and it is the most rural state in South Sudan, 92% of the NBEG
population lives in rural areas (SSNBS 2011). This state has 5 counties (see Map 1). Malaria Consortium is
working with the South Sudan Ministry of Health (SS MOH) in iCCM in 2 of the 5 counties, Aweil Centre and
Aweil West. The SS MOH organizational structure divides Counties into smaller units called Payams, and the
Payams into smaller units termed as Bomas (see Figure 1 below).
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Figure 1. The Organizational and Management Structure of South Sudan Ministry of Health (SSMOH 2012)
The South Sudan health system is decentralized and based on four levels: the community level Primary Health
Care Unit (PHCU); first referral Primary Health Care Centre (PHCC); second referral County and State Hospitals
and 3 National Referral Hospitals. Service delivery is the responsibility of State Ministries of Health (SMoH) and
the County Health Departments (CHDs) while the national Ministry of Health (MoH) provides leadership
through setting policy and guidelines, resource mobilization, and health sector partnerships coordination.
South Sudan has prioritized ‘community health systems strengthening’ aimed at improving community health
services, which mainly target vulnerable populations with limited access to the formal health system, mainly
due to log distance from health facilities, as only 44% of the population is estimated to be living within a five
kilometre radius of a health facility (SSMoH-NGOHF 2011, MoH-GOSS 2012). CBDs who deliver iCCM are linked
to the formal health system through training, support supervision and replenishment of medicines/supplies
(MoH-GOSS 2009).
In South Sudan, Malaria Consortium currently implements ICCM in Aweil Centre and West counties in
Northern Barh El Ghazal state (see Map 1). At the time of the FGDs, 1,676 CBDs were working with the
programme (of whom 66.7% were female). The1 676 CBDs had all been trained in the Home Management of
Malaria program, with 955 trained for six days on the full ICCM package, as of November 2014 all the CBDs
were trained in the full iCCM package. It is recommended that the community should select CBD volunteers
who are adults of good standing in the community and should be above 18 years of age. Malaria Consortium is
currently collecting demographic data including age information on the CBDs.
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The majority of CBDs have extremely low literacy and numeracy as they have not attended formal education,
hence within the program, the training on pneumonia diagnosis uses, pictorial job aids and two pneumonia
diagnostic devices for facilitating counting of respiratory rate in children with cough, namely: ARI timers and
counting beads for infants and toddlers. The beads are color-coded and in different sizes to separate the two
age groups.
Picture 1: Female CBD speaking to a mother in the community
Study population
A stratified sampling approach was followed considering Sex, County and Payam of work to select 24 CBDs,
engaged in iCCM work with SS MOH and Malaria Consortium in Aweil Centre and Aweil West counties. The
sampling was done from an existing Malaria Consortium database listing a total of 1676 iCCM CBDs. The
sampling criteria would have ideally included information on age, education and length of work-experience for
the CBDs but this information was not available in our database.
The final list of 24 CBDs was affected by inadequate data on CBDs in existing data base, communication of FGD
invitation was hampered by lack of mobile phone signal in the study area and distances of CBDs, availability of
invited CHW, distance to FGD venue and this led to a sample of 14 males and 10 females (instead of the
expected sample of 8 males and 16 females). (See: Sampling Frame Diagram below).
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Sampling Frame Diagram: 24 iCCM Community Health Workers, who participated in FGD for Pneumonia Diagnostics, Stage 1
Research
Demographic characteristics of the 24 participants; 58% were male, the age range was 21-35 years (average
28 years), the range for length of experience as a CHW was 2-6 years (average 4 years) (see Appendix 1).
Replacement of participants occurred on the day of all 3 FGD sessions. In total 6 participants were replaced for
the following reasons: they could not be traced because they were residing in a difficult to access region of the
study area and lived in an area with no mobile phone network (N=3), received the invitation, but were residing
too far from the discussion venue (N=2), received the invitation but our data-base had not yet been updated
to indicate that this participant was no longer working in the ICCM program (N=1).
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Data collection
Ethical approval for the study was granted by, the Directorate of Policy, Planning, Budgeting and Research,
Ministry of Health-Republic of South Sudan on 23rd May 2014.
Four Research assistants were recruited from the local community and were trained over 3 days on the
research goal, research objectives, how to conduct focus group discussions and they were trained on
obtaining informed consent. The information and consent documents had been translated into Dinka language
(see Appendix 2). They reviewed both the English and Dinka documents and they participated in mock FGD
sessions. They were further trained in data management.
The research assistants participated in the pre-testing of the documents in one pilot with four CBDs (two male
and two female) and this gave an opportunity to improve on the FGD skills.
The research assistants were provided with the list of names of 24 CBDs who were to participate in the three
FGDs, and using their local knowledge and working with the Payam level administration, they were able to
organize the three central points for conducting the FGDs in the community and also send prior invitations to
the CBDs. (see picture 1 and 2, FGD session in the community).
The four research assistants assigned themselves responsibilities for the FGDs: moderator, note-taker
(recorder) and observer. The 3 FGDs were conducted in May and June 2014; each session was conducted with
8 CBDs, and lasted approximately 2 hours.
At each FGD, the moderator welcomed the participants and explained the purpose of the FGD. The note-taker
gave each participant two copies of the information sheet/consent form, which had the information written in
English and Dinka languages (see Appendix 2), the note-taker read and explained the information to the
participants, written informed consent was then obtained from each participant by them signing two copies of
the consent form; each of the participants was given a copy of the signed form. The investigator’s copies of
the signed consent forms are stored in a locked metallic cabinet in the Malaria Consortium office in Aweil
Centre town. The field, fair-notes and final transcripts were anonymized, code R was used for the researcher,
code I for interviewees (see Appendix 1).
The moderator then led the discussion in Dinka language using the FGD guide and the note-taker recorded the
notes, the notes collected at this stage were field notes, written either in Dinka or English depending on the
note-taker’s ability to write in that language. A third research assistant recorded observations during the FGD.
The FGD was audio-recorded using two audio-recorders.
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At the end of the FGD the investigator’s copy of the signed consent form, the FGD attendance list, and the
field notes were kept in a waterproof bag and carried back to the Malaria Consortium office in Aweil Centre
town. The field notes were photocopied, and the photocopied notes were stored separately from the original
notes. The audio-records were downloaded onto a computer and external hard-drive, the informed consent
documents, attendance sheets had participant identifiers and they were therefore stored separately.
The research assistants then used the field notes and audio recordings to translate and type the FGD into two
fair notes (one for the information obtained by note-taking and the second for information obtained by audio-
recording), the two fair notes were provided to the research officer and project manager who then proceeded
to transcribe the fair-notes into three transcripts, one each for the three FGDs.
Picture 2 FGD participants reading the research information sheets
Picture 3 FGD session in the community
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Data analysis
Preliminary thematic analysis using the fair-notes was done around the three main themes outlined in the
topic guide and summarized in a simplified table (see Appendix 3).
The next stage of the analysis involved a detailed review of the final verbatim transcripts and the development
of a global coding frame through discussions and consensus by the country teams, the coding framework
encompassed the themes that emerged from the FGDs in all four countries, a senior specialist led this process.
The senior specialist centrally uploaded the coding framework and transcripts from the three FGDs in each
country into Nvivo 10 software. The country teams proceeded to conduct the data analysis and coding of their
respective transcripts using Nvivo software, the Nvivo coding reports generated by the country teams were
reviewed by the senior specialist. In cases of discrepancies, the affected themes and sub-themes were
discussed and the data re-coded, new themes were added when necessary through a consensus process. This
approach ensured that the data analysis was standardized across the four countries.
Results
The full FGD responses are tabled in Appendix Three (page 34).
Theme 1: CBDs Knowledge and Management of Pneumonia in the Local Health Situation
Felt Need, Common Illnesses
18 of the 24 respondents gave their views on what they felt was the common childhood disease in the
community and 12 of the 24 responded that pneumonia was the most common childhood disease; malaria
and diarrhoea were each mentioned by three respondents.
The three diseases together with malnutrition have been identified by the South Sudan Household and Health
Surveys’ to be the leading causes of morbidity and mortality in children under five years in South Sudan, and
are amongst the priority diseases to improve child health indicators in South Sudan (MoH-GOSS 2006, MoH-
GOSS 2011, MoH-GOSS 2012).
Examples of the responses for the 18 respondents are as follows:
Pneumonia
SSP1F1R7 “Pneumonia is the most common in our area because mothers do not take good care of the children.
This is because, they don’t have knowledge of preventing pneumonia, like keeping their children in a warm
place not to get cough”.
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SSP2F2R4. “Yes, I think pneumonia is the most common disease that is killing children less than 5 years of age
because mothers do not know how to protect their children from pneumonia; it is the most dangerous disease
in our community”.
SSP3F3R7 [Smiling] “Pneumonia is the disease which affects children under 5 years old the most. This is
because mothers do not take good of their children by exposing them to cool weather and also by bathing
them at wrong hours for example at night, also they fail to cover them using blankets which encourages
pneumonia in this area”.
Malaria
SSP1F1R4 “Well, Malaria is the most common one in this area because of mosquito bites and also many people
lack mosquito nets and they come to me seeking for treatment”.
Diarrhoea
SSP3F3R2 “Diarrhoea this is because of poor sanitation in the areas where parents fail to practice good
sanitation at their homes”.
CBDs Knowledge on Identifying Signs and Symptoms of Pneumonia
The responses indicate that In general a number of CBDs are able to correctly and confidently identify and
examine a child for the common signs and symptoms of pneumonia, additionally a few CBDs were able to
demonstrate knowledge on examining a child with pneumonia for danger signs.
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This is a reflection that the iCCM program is able to train community volunteers who are largely illiterate, by
using simple algorithms and pictorial job aids in managing an important childhood disease at the community
level.
Examples of the responses of CBDs who demonstrated basic knowledge on identifying and examining a child
for the common signs and symptoms of pneumonia:
SSPF2R1: “Cough is a sign and symptom of pneumonia I have to use respiratory timer and respiratory beads to
examine whether the child has pneumonia or not and if it reads red that means the child has pneumonia I can
give treatment Amoxicillin depending on the child’s age”.
SSP2F2R2: “In that case, for me I have to observe or assess the child whether child has fast breathing and
cough or not, and if he or she has those signs and symptoms it means the child has pneumonia and he or she is
eligible to be treated using amoxicillin depending on the child’s age. However, before that I have to examine
the child using respiratory timer and respiratory beads”.
Example of the responses that aimed to describe CBDs knowledge on identification of danger signs in a child with pneumonia.
SSP2F2R6 “Chest in drawing is also a common sign and symptom for pneumonia in children less than 5 years of
age. A child with chest in drawing has a danger sign and such a child is given the first treatment and sent to the
nearest health facility for additional check up by nurse or clinical officers”.
The study also found that most CBDs demonstrated that they are able to correctly use the two diagnostic
devices, ARI timer and counting beads to count a child’s breathing rate, and make decisions to prescribe
antibiotic treatment for pneumonia:
Examples of the responses on device usability, correct use of ARI timer and counting beads include:
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SSP2F2R1: “For me, I have to welcome the caretaker to sit and I give him or her some drinking water, then he
or she will explain the child’s problem and if it is cough, I have to tell the mother to breastfeed the child
whether the child will cough or not before I decide. Cough is a sign and symptom of pneumonia I have to use
respiratory timer and respiratory beads to examine whether the child has pneumonia or not and if it reads red
that means the child has pneumonia I can give treatment Amoxicillin depending on the child’s age”.
SSP2F2R5. “Well, for me, they normally come to me to ask for treatment of pneumonia, and I have to tell the
caretaker to remove the child’s cloth then I begin to examine the child using respiratory timer while counting
beads before giving drugs for pneumonia”.
CHWs Accessibility, Community Engagement in iCCM and Community Treatment Options
The community in Aweil Centre and West, has two main treatment options for management of childhood
pneumonia; community management by CBDs due to their accessibility and the fact that the community is
aware they have been trained and have medicines, the community and community leaders have embraced
the iCCM program, and are involved in selecting the appropriate volunteers to be trained as CBDs. The CBDs
expressed that they take this responsibility seriously and are always available to serve the community, some
of the CBDs expressed that they also conduct home visits to follow-up on sick children. The alternative
treatment option for pneumonia is health facilities (PHCC, PHCU) and these are used by the community when
they are referred their by the CBDs for; management of danger signs, cases that are too difficult for the CBDs
to manage, age groups that are not treated by CBDs as per iCCM algorithm or when the CBD has run out of
medication.
Example of responses indicating CBDs, availability and positive attitude towards community management of
childhood pneumonia include:
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SSP2F2R3. “Yeah, I attend to all the children in the community because the community selected me to help
children less than 5 years of age. I was trained by ICCM team to give the support needed by my people so; I
have to serve all of them if there are enough drugs”.
SSP2F2R1: “Yes, I manage to carry out my entire task assigned to me by Malaria Consortium because, I have to
save my people and that is why I was chosen among the group in our village to help them”.
SSP1F1R4 “I go to their homes to check how the children slept in the night and to get more information about
the children’s health and if there is a problem I can be able to know from them”.
Responses indicating Community Awareness of the iCCM program, Community Involvement in the iCCM program and Confidence in the use of CBDs for community management of pneumonia include:
SSP1F1R3 “They come to us because we have been trained as CBDs and also because of the kind of services we
are giving them. Since they know we are working to help the community at large”.
SSP1F1R3 “Yeah I have been given the green light by the community and government to carry out my duties
and to help children under 5 years who are suffering from pneumonia”.
SSP2F2R7. [Smiling] the community is very happy about the services we give and that encourages people to
come for treatment, I normally do my part if the drugs are available.
Responses indicating Alternative Treatment option for the community (health facility) include:
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SSP3F3R1 “They come to me to get treatment because they know I have been trained and I have been given
drugs by Malaria Consortium, after my visit if I find that the child has not improved I have to refer to PHCC or
PHCU”.
SSP2F2R4. “I normally go to their homes after giving the treatment because sometimes our tools are not good
enough to show accurate results. The reason is that, the child may have a different sickness from pneumonia or
I counted the respiratory beads wrongly and it showed that the child has pneumonia yet in reality, it is a
different sickness. So in that case, I have to make a follow up on whether the child has recovered or not and if
not recovered, I have to send him or her to the nearest health facility for further check-up”.
SSP1F1R6” I go to their homes to see how the children are feeling and if the sickness persists, then, I advise the
parents to go to the nearest PHCC or PHCU to get treatment”.
Availability of Diagnostic Tools and Adequate Supply of Antibiotics
The CBDs are able to manage childhood pneumonia in the community, when a reliable supply chain is
available to ensure that they have pneumonia diagnostic tools that are in good working condition and an
adequate supply of antibiotics.
Examples of responses on the Supply Chain Management: indicating availability of devices and medicines for
community management of pneumonia are:
SSP1F1R1 “Yes I have tools for diagnosing pneumonia for example when the parent comes with the child I
check them first and if the respiratory beads show green reading I give the child amoxicillin”.
SSP2F2R4: “They [parents] are aware of CBDs, because we have strong drugs that can help children”.
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SSP2F2R8. “Yeah, for sure, they gave me tools and drugs to treat pneumonia. I am also looking forward to
treat other diseases like malaria, diarrhoea, SAM and other diseases that will be assigned by Malaria
Consortium if need be”.
Theme 2: Current Constraints in Pneumonia Care at the Community Level
Constraints in pneumonia care at community level were identified by responses that were indicative of either
forgetting the iCCM pneumonia guidelines, having lack of or inadequate knowledge and skills to identify
pneumonia, this ranged from responses such as “the common signs of pneumonia are running nose or
excessive crying”.
The CBDs, who were selected to participate in the FGDs, might have included those that had only received the
training on Home Based Management of Malaria and not the entire iCCM training package. Some of the CBDs
had already received the entire iCCM training package, but the responses indicate that iCCM CBDs require
regular supervision and refresher training for CBDs.
Forgotten iCCM Guidelines
Examples of responses of CBDs who demonstrated having forgotten the iCCM pneumonia guidelines, lack of or
inadequate knowledge in identifying signs and symptoms of pneumonia are:
SSP1F1R5 “Vomiting is the most common sign and symptom in a child who is suffering from pneumonia. I
advise mothers if they see this in their children, they should look for treatment”.
SSP1F1R1 “Crying this is the most common sign and symptom in a child who is having pneumonia and I detect
it using respiratory timer and counting beads?”
A small number of CBDs also described the use of UNICEF timer alone or counting beads alone, in a few cases
it was clear that one of the tools had been damaged and the CBD had not received a replacement. It was not
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clear from the responses whether those using counting beads alone were replacing the UNICEF timer with
personal means of timing 60 seconds such as a watch.
We also found that a few CBDs were not using the diagnostic devices correctly, by either using a device alone,
or by treating pneumonia at the green instead of red beads.
Examples of responses on Device Usability and Availability, use of ARI timer or Counting Beads alone include:
SSP1F1R4. “First I welcome the mother of the child and ask the name of the child, age in years and months. The
duration that the sickness has taken and after that I use the respiratory timer to examine the child, that
respiratory timer can show signs of pneumonia”.
SSP1F1R4 “Children under 5 years, I use coloured counting beads to diagnose pneumonia and I check for signs
and symptoms of pneumonia for example high fever, vomiting and if the coloured counting beads shows green
than am made aware that the child has pneumonia”.
SSP1F1R1 “I use coloured counting beads to diagnose pneumonia, for example if it shows green I am sure that
the child has pneumonia, then I give him medicine to take, then I advise the mother to give the child the
medicine during evening hours”.
Constraints with Availability of Diagnostic Tools and Adequate Supply of Antibiotics
The work of the CBDs in diagnosing and managing pneumonia is affected by the availability of pneumonia
diagnostic tools and an adequate supply of antibiotics.
Examples of responses on the community management of pneumonia being affected by the supply of drugs
and devices (supply chain management).
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SSP2F2R8 “Yes they normally bring their children to me for treatment but sometimes I cannot give the needed
support because of lack of drugs”.
SSP2F2R6: “Yes, for me the problem I face now is that the respiratory beads I had got broken, and that has
made my work not easy. I reported it to my supervisor to replace it but no action to date”.
R. Ok so how do you manage to treat pneumonia?
RN [Other participants laughed]
SSP2F2R6. (..............) Sometimes I borrow from my colleagues.
Device Use Constraints
The CBDs expressed a number of challenges related to using the current pneumonia devices, related to their
operability, patient comfort, managing critical patients, these challenges made them and the caregivers lack
confidence in the diagnosis and decision making on whether to treat or not treat the child with antibiotics, the
challenges were:
Examples of Responses on Device Usability Constraints focused on the fact that devices are clumsy or too
cumbersome to use:
SSP1F1R2 “I dislike coloured counting beads, because you can read some and skip the rest and that makes it
difficult for me to diagnose pneumonia”.
SSP1F1R1. “Coloured-counting beads is not good because when I use it, I read some and skip rest, if there is
way of getting good better tools we will be glad to have it. Mostly I would like a tool, which I can read alone
while am looking at the child’s chest, so I prefer to have something like a phone because phone can show exact
time when you are diagnosing pneumonia”.
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Examples highlighting where devices are not durable included:
SSP1F1R2. “It is not reliable to use respiratory timer this is because if you don’t take good care it can fall down
and that can prevent it from working in a normal manner”.
SSP3F3R5 “Well, we were taught on how to use respiratory beads and timer, but sometimes the timer does not
last for long”.
Examples highlighting where devices are not acceptable to the community/do not offer patient comfort:
SSP1F1R5 “I dislike respiratory timer because it disturbs the child, the child may cry while you are diagnosing
pneumonia”.
SSP1F1R6. “Respirator timer is not good because it makes a lot of noise and that scares the child and also it
can’t give exact minutes when diagnosing pneumonia because of the movement of the child. If there is a
chance of getting a watch it could be better to have it, because a watch is simple to use and am sure it will give
accurate results”.
Examples where devices are not acceptable due to low CHW or caregiver confidence in decision-making
include:
SSP1F1R5. “It is not easy to use respiratory timer because sometimes I can’t decide on the results and therefore
I advise parents to go to the PHCC”.
SSP2F2R1. “Respiratory beads and Respiratory timer are not acceptable because they cannot give accurate
results to me and the parents of the child when diagnosing pneumonia”.
Need for Refresher Training
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The CBDs also expressed that they require refresher trainings as pneumonia diagnosis and the use of counting beads and ARI timer is not easy and the skills they are taught in identifying signs and symptoms of pneumonia are easily forgotten. Examples of responses on the need for refresher training included:
SSP2F2R1. “Of course, I need to have refresher training on all four diseases namely pneumonia, diarrhoea,
malaria, SAM because I did not understand them especially pneumonia and how to count respiratory beads”.
SSP2F2R2. “Yes. For me I need additional training on how to count the respiratory beads and respiratory timer.
They normally confuse me when I am counting the beads and the child is breathing at the same time”.
Theme 3: Ideal Tool Characteristics for Pneumonia Diagnosis:
The CBDs gave their opinions on an ideal tool for diagnosis of pneumonia in iCCM, in general they mentioned that the tool has to be acceptable to CBDs and caregivers and be comfortable for the patient
Responses on Ideal Tool Characteristics when considering, Device Usability
Patient Comfort examples:
SSP2F2R2: “I dislike respiratory beads and timer because they scare children and make them cry. The way the
respiratory beads look and the sound the timer makes when diagnosing pneumonia. Therefore, if there is a
way of getting a good one [tool] that does not make noise, it will be good”.
One with Automated diagnosis: colour display, digital display examples:
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SSP1F1R1. “Coloured counting beads is not good because when I use it, I read some and skip rest, if there is
way of getting good better tools we will be glad to have it. Mostly I would like a tool, which I can read alone
while I am looking at the child’s chest”.
Accurate, Simple Tools and Easy to Use examples:
SSP3F3R2 “It [tool] should be accurate and easy to use in the community widely…”
Examples of responses on which tools do the CHWs find to be acceptable to the parents?
SSP2F2R6. “Respiratory beads are not good because you can skip one or two beads when counting to diagnose
pneumonia. That makes our work not good enough, because you can find at the end that the child has
pneumonia but it is the counting that is wrong. So we prefer another tool that will not be counted like beads,
simple to use and it can give accurate results”.
Durable tools example:
SSP2F2R7. I need a change on tools that we are currently using that cannot break easily or get damaged.
Multi-Functional tools example:
SSP3F3R6 If I create mine it will record all the problems, which are holed in your body.
Ideal Tools Designs
The CBDs gave their opinions on what would be an ideal tool designs, and they mentioned tools that would work like: mobile phone (N=14), watch (N=5), radio (N=2), thermometer (N=1) and digital camera (N=1) Examples of responses on ideal tool characteristics, preferred design types
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Mobile phone examples:
SSP2F2R1: “If I were the one to make these tools, I would have made my own tool to look like mobile phone
because mobile phones do not make a lot of sound that scares children”.
Watch examples:
SSP1F1R6. “Respirator timer is not good because it makes a lot of noise and that scares the child and also it
can’t give exact minutes when diagnosing pneumonia because of the movement of the child. If there is a
chance of getting a watch it could be better to have it, because a watch is simple to use and am sure it will give
accurate results”.
Thermometer examples:
SSP1F1R5. If given time, I can make my own tool to look like a thermometer because a thermometer does not
make noise to scare the child
Digital Camera examples:
SSP3F3R2 waaaaaa, I don’t think I can design any tool…………I can make it look like a digital camera
Radio examples:
SSP3F3R5 Yes, it will work like a radio while recording and it can tell you the child has pneumonia
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Discussion
Communication implications
The focus group discussion with iCCM CBDs found that the community management of pneumonia is key for
management of a childhood disease that is acknowledged by the majority of the CBDs (n=18 of 24) to be
common and serious in children under the age of five years in the community. The CBDs expressed that they
had been trained in iCCM and were therefore not only capable but also their role of providing treatment for
childhood pneumonia in the community as a personal responsibility, as mentioned by CBD SSP2F2R3
“SSP2F2R3 Yeah, I attend to all the children in the community because the community selected me to help
children less than 5 years of age. I was trained by ICCM team to give the support needed by my people so; I
have to serve all of them if there are enough drugs.”
This commitment by CBDs to provide community based management for pneumonia is important for a
country like South Sudan which is aiming to reduce children under 5 morbidity and mortality by tackling
common childhood diseases like pneumonia. It has been demonstrated in other countries, for example in
Nepal that it is possible to train illiterate adults to provide effective diagnosis and management of childhood
pneumonia in the community, in addition to facility based management of pneumonia especially in areas
where communities have challenges in accessing primary health care facilities (Dawson, Pradhan et al. 2008,
Marsh, Gilroy et al. 2008).
In our study, we found that though a good number of the CBDs are able to correctly identify the common signs
and symptoms of pneumonia, it was clear from the FGD that a number of the CBDs struggle with both the
identification and management of pneumonia using the iCCM guidelines and using the tools provided; the
counting beads and ARI timer. An example is CBD SSP3F3R6 who expressed an ability to diagnose pneumonia
plus danger signs and prescribes antibiotics, without having to examine the child with the respiratory timer
and counting beads; “SSP3F3R6 I sometimes, check whether a child has high fever, fast breathing and also
vomiting therefore I give amoxicillin tablets without using respiratory timer and coloured counting beads.”.
This indicates a clear indication of forgetting the pneumonia treatment algorithm.
Responses from some of the CBDs indicated improper use of the devices that are provided to aid CBDs in
diagnosing pneumonia, with one CBD indicating that antibiotics are provided at the green beads. The
statement was, “SSP1F1R1 I use coloured counting beads to diagnose pneumonia, for example if it shows
green I am sure that the child has pneumonia, then I give him medicine to take, then I advise the mother to
give the child the medicine during evening hours.” In this case CBD SSP1F1R1 would have been referring to the
beads for the child 2 months to 11 months, which have 49 green beads plus 10 red beads (see picture 4),
when these beads are used correctly with the ARI timer, the CBD would give the antibiotic when their finger
has moved to any of the red beads at the point of the sixty second beep of the ARI timer.
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Picture 4 Counting Beads used in iCCM program, Malaria Consortium-South Sudan
A narrative review of fifteen studies on community case management of pneumonia in Sub Saharan Africa
found that adherence to training guidelines and counting of respiratory rate remains a huge challenge for
community management of pneumonia leading to dangers of antibiotic misuse such as over-treatment or
failure to treat the child (Druetz, Siekmans et al. 2013). The danger of antibiotic misuse when treating
pneumonia in the community was an issue that was raised during the FGDs. CBD SSP2F2R6 expressed that it is
possible to erroneously treat for pneumonia depending on how the CBD performs the counting of the
respiratory rate “SSP2F2R6. Respiratory beads are not good because you can skip one or two beads when
counting to diagnose pneumonia. That makes our work not good enough, because you can find at the end that
the child has pneumonia but it is the counting that is wrong. So we prefer another tool that will not be counted
like beads, simple to use and it can give accurate results.” The comment by this CBD is also supported by a
previous study on the use counting beads in South Sudan, Uganda and Ghana, which found that large spaces
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between beads can lead to inaccurate counting and counting beads was found to be an added task (Noordam,
Barbera Lainez et al. 2014).
The CBDs who participated in the FGDs, requested that training including refresher training on the pneumonia
component and on the correct use of the counting beads and ARI timer should be a priority activity for the
iCCM program. It is also important for CBDs to be periodically supervised to check on whether they are
correctly identifying pneumonia by using the counting beads and ARI timer. Close supervision will also ensure
that the CBDs have adequate supply of antibiotics and that damaged diagnostic tools are replaced.
The FGDs allowed the CBDs to express their opinions on the current pneumonia diagnostics tools and their
ideas of better tools. It emerged that the CBDs are not comfortable using the current diagnostic tools for
counting of the child’s breathing rate and making decisions to give antibiotics. Their concerns on the current
tools is that it is difficult to use both the counting beads and the ARI timer when concentrating on the
movement of the child’s chest, and this concern has been expressed by CHWs in previous studies in South
Sudan, Uganda, and Ghana (Kallander, Tomson et al. 2006, Noordam, Barbera Lainez et al. 2014). The CBDs
also mentioned that quiet often they might move more beads than they intended too, thereby leading to an
erroneously high count, they raised concerns on the durability of the current tools, for example the string of
the counting beads breaks easily and the battery for the ARI timer does not last long. A common concern was
patient comfort, it was indicated that the ARI timer is not easy to use as the tick of the timer frightens
children.
A number of ideas were proposed by the CBDs to improve on the current diagnostic tools. They would like
tools that are easy to use, preferably tools that are automated for example a tool that can give the diagnosis
using colour display, tools that last long, this includes tools with long battery life or those which are not easily
damaged. They would like tools that make the child comfortable when near the CBD.
They design types mentioned for the future tools included mobile phones, this was mentioned as a design
type that could support automation and digital display of results, it was also mentioned that a mobile phone
would not frighten the children. A simple watch was also mentioned as a simpler way of counting rather than
using the ARI timer, which makes a ticking sound that is disturbing to the children and also has a short battery
life. The CBDs would like tools that record and communicate the results to them automatically and it was
suggested that a device that worked like a radio or digital thermometer would be able to self-record and
communicate the results clearly.
Study limitations
The research team experienced several limitations during data collection:
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Cultural aspects, it is possible that female participants might have contributed less during the
discussion (though this is a subjective observation), as the random selection of CBDs meant that
males and female CBDs, and CBDs of different age groups sat together in the same discussion.
Data loss during translation from Dinka to English, this is contributed to, by low to moderate
command of written English by the field staff and lack of knowledge of Dinka language by
supervising staff.
Dinka language is very wordy and this led to a lot of missed words/phrases by the note-taker
during the focus group discussion.
Long distance between Aweil Centre and the Payams, and long distance between the Payams,
such that at the 2nd and 3rd FGDs, participants had to be replaced because some of the
participants failed to arrive in time for the FGD due to long distances that they had to cover
mostly on foot.
Long distances and difficult road terrain between Payams made it a challenge to send face-to-
face invitations to the CBDs prior to the FGDs.
Lack of phone network outside Aweil Centre town, this means that invitations to CBDs could
not be sent via mobile phone, CBDs invitations had to be delivered in person, and after
travelling long distances from Aweil Centre town to the payams it was common not to find
some of the CBDs at their homes to deliver the FGD invitations directly, some of the invitations
were then handed to the CBD supervisors and neighbours, and it was not guaranteed that the
CBD would receive that invitation.
High expectations from the CBDs and the communities in the Payams for incentives to carry out
this research study in the community.
The sampling criteria would have ideally included information on age, education level and
length of work-experience for the CBDs but this information was not available in our database.
The Malaria Consortium iCCM program is updating the database with this information.
Conclusion
It is clear that the iCCM CBDs have experienced challenges in using the counting beads and ARI timer in the
diagnosis and management of pneumonia in the community. The FGD results support the need to evaluate
better tools for pneumonia diagnosis at community level.
It will also be important to gain information on whether gender, age and education level of CBD volunteers
would affect their views on an ideal pneumonia diagnostic tool.
Appendices
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Appendix 1: Stage 1 Research FGD Participants
Ayat East Payam (FGD date: 30-05-14) Mariem West Payam (FGD date:02-06-14) Aweil Town Centre (FGD date: 05-06-14)
Interviewee Age Sex Years of
Experience
Interviewee Age Sex Years of
experience
Interviewee Age Sex Years of
experience
I1 31 M 3 I1 27 F 3 I1 28 F 4
I2 32 F 4 I2 29 M 4 I2 35 M 5
I3 25 F 4 I3 34 M 4 I3 23 M 6
I4 23 M 5 I4 21 M 5 I4 24 M 2
I5 22 M 3 I5 26 F 3 I5 22 M 5
I6 34 M 5 I6 27 M 5 I6 25 M 3
I7 28 F 4 I7 38 M 4 I7 30 F 2
I8 21 F 5 I8 30 F 5 I8 32 F 2
Table 1: Stage 1 Research FGD Participants
Appendix 2: FGD Information Sheet (English and Dinka Translation)
Pneumonia Diagnostics Study
Pioc te ye tuany hol ngiec thin
Information Sheet 1 – Community Health Worker Focus Group Discussions
Abang tok 1 – Jam akut lon pial guop
We would like you to help with a research study. This information sheet will tell you what the research involves. Please take your time reading it. It can be read out to you if you choose. Please ask questions and you can talk it over with others if you wish.
Awic ku bin pioc ken kuony ku welke to athor ken yic abi kony ba ke wiic detic, yuol ke kuen bin yen detic, na wiic ke leu bii kuen tene yin. Aleu bin thiec wala bin yen jamic kek koc kok te wiic yin yen
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Overall, the study aims to improve the diagnosis of pneumonia in children under five years of age by community health workers. This is the first stage of the research and will look to capture current challenges in diagnosing pneumonia at the community level and suggestions on characteristics of a tool that could improve the accuracy of pneumonia diagnosis, which is acceptable to the caretakers.
Pioc ken eben eku bi lang ke cok long te ye tuany hol ngiec thin tene mith kor lang run ka dhiec (5) dhuk piny tene koc lon pial guop. Kene eyen ajok tueng ku abi ke jor koc ye men bei ku nyoth dhol puoth leu bi tuany hol ya ngic baai yic ku tekek to puoth leu bi kok la cok yok thin bi hol ya ngic, ku bii marken yi mith nhiar.
Why have I been chosen for the study?
Ye wet ngo yen kueny hen pioc kene yic
You are a community health worker trained in the care and treatment of malaria, pneumonia and diarrhoea in under-five children in a number of locations including in the area where you live. Approximately 24 community health workers will participate in this stage of the study.
Yin raan lon pial guop ci pioc kuony long; Atuoc, hol ku jol a Yac tene mith kor long run ka dhiec(5) dhuk piny te dun reer yin thin ku bei kok thiok kek yin. Te cit ten raan lon pialguop thiarou kun guan (24) abi welken mat pioc ken yic.
What happens if I agree to take part?
Ye ngo bi rot loi te met yen rot thin?
You will be involved in this focus group discussion lasting approximately two hours. Whether you take part is your choice. Participation is completely voluntary; you may choose not to take part or to stop at any time.You will continue to receive the same diagnostic tests and medicines as usual if you do or do not agree to participate. If you participate you will help us find out the best way to diagnose pneumonia in the community.
Yin abi rot mat kek akut jiem ken yic, ku jam abi ya thok te cit tene saat ka rou (2hrs) eyin yin bi ye tak ba rot mat thin acin ke bi gam jamic eben, aleu bin ye kuany lon bin cuk ye raan thin wala ba koc te tek yin yen.
Yin abi nguot yi la tueng ka yi thon ka kun ther ye gam yin ci men waal ku kok luoi cimen there te cin ye gam wala kac gam. Na ba rot mat thin, ke yin abi ok kuony buk dhel path yok bi ok tuany hol ya ngic ten baai.
The Focus Group will be led by a trained member of our research team and will allow you and your colleagues to discuss a number of important issues concerning the diagnosis of pneumonia in your community.
Jam ken abi raan ci pioc kam koc kuan pioc wat nhom, ku abi wek puol bak karil yic apei jamiic te cit te ye tuany hol ngiec thin pandun.
What are the benefits of taking part?
Ye ngo yen ariop raan ci rot mat thin?
If you take part, it is possible that you will only participate in this element of the study; however we cannot be sure at this stage. You will only find out later. Otherwise, there are no direct benefits to you, but this study
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hopes to improve the care of children with pneumonia like those you provide care for in the future.Your travel costs and light refreshments will be provided.
Na ba rot mat thin, ka ke to eku ba jam thin tene ka jiemkek yic ke, ku acin ke det ngicku ten, eke leu bin yen jal yok la ther. Ku dhil ngic lon cin yen ariop ten yin, eepioc ken yen abi lang ke cok ten kuony mith tueny hol kek cimen mith ther ye ke kony. Weu kun cath ku ke thik cam puolyic abi to thin.
What are the possible disadvantages and risks of taking part?
Ye ngo leu bi ya ke rac te met raan rot thin?
There are no added risks involved in participating in this study. Whether you agree or not to take part you will continue to receive same medicines and tests from the project.
Acin ke reec to thin tene koc ci rot mat thin pioc ken yic,te cok yen alon ci yin ye gam wala ca jai ba rot ci met thin , ke yin nguot yi la tueng ke yi lom walk u ka kun luoi tene koc kun luoi.
Will my participation in the study be kept confidential?
Wel cien ba kek luel pioc yic bi kek thian bi ke ci ngic?
Yes. The information will be stored by a number, not by your name. The information will only be available to the researchers working on the study.
Etede, welku abi toou ka ke ye akuen wet ku acie rienku, welke abi reer kek koc lui pioc ken yic.
What will happen to the results of the study?
Ye ngo bi rot loi ten ka bi ben bei thin piocic?
They will be used to improve pneumonia treatment in under-five children care and specifically help in the development of better diagnostic tools for pneumonia. The results will also be published in medical journals. You will not be identified or identifiable in any reports of publications.
Abi luoi bik kuony cok long tuany hol tene mith kor lang run ka dhiec (5) ku abi lang kuony path long la tueng ka ye tuany hol ngic.welke aya kek abi nyuoth athor ye wel wal got thin ku yin aci bi kang ngic te nguth kek thaai
What happens if the research study stops earlier than expected?
Ye ngo bi yien da te le pioc ken koc kamciek ku acie yen to ngoth?
If it does, we will provide you with clear information as to why
Na loi rot ka wek abuk lek wet col yen aloi rot keya?
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Who is doing and paying for the research?
Ye nga loi kene ku ye koc pioc riop?
Malaria Consortium is carrying out the study, with support from the Bill and Melinda Gates Foundation, who are funding the study.
Malaria consortium guop yen yieth kene tueng ku ekuony de yok tene Bill ku Melinda Gates Foundation, ku kek aye pioc ke kuony
If you have any questions at any time, please ask a member of the research team or you can contact:The Research Officer, Pneumonia Diagnostics Project, South Sudan, Malaria Consortium, Telephone: +211 (0)922 400572
Na leng ke wic ba thiec agut cin akol da, ke yi thiec raan tok kam akut koc pioc wala ram kek ok ten: + 211 (0) 922 400 572
Participant Consent Form 1
Research study: A study to capture current constraints in diagnosing pneumonia at the community level and suggestions on characteristics of a tool that could improve the accuracy of pneumonia diagnosis which is acceptable to the caretakers.
I confirm that I have read and understood the information sheet dated _____________________, explaining the above research project and I have had the opportunity to ask questions about the study.
Aca kuen ku aca detic lon na da ka wel to athor ken yic akol niin kua ca thiec ke den looi.
I understand that my participation is voluntary and that I am free to withdraw at any time without giving any reason and without any negative consequences. In addition, should I not wish to answer any particular questions, I am free to decline.
Hen aci rot juar epath ba lonken looi e path ku hen a leu ba muol akol ci hen ye tak ke cin ke rec reel thin kua cin raan thiec hen.
Contact number of researcher: +211 (0)922 400 572
Nimira raan yoop ken: +211 (0)922 400 57
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[35]
1. I understand that my name will not be linked to the research materials and any personal information that could identify me will be kept strictly confidential. I understand that my responses will be anonymised and that I will not be identified or identifiable in any report, publications or presentations that result from this research.
Aca detic rien cie aci bi mat kek kak lon ken abi ngic, kua bi tou rot.
2. I agree for the data collected from me to be used in future research.
Aca gam bi welka ci loom tene hen luoi akol det.
3. I give permission for this interview to be recorded, to be used only for analysis.
Ka ca luel aca puol bi ke toou bi kek ben caath yiic.
4. I agree to take part in the above research project.
Aca gam bi lang ke luoi ka wic ka yiic.
*To be signed and dated in the presence of the participant.
Abi thanyic ku gat akol niin ka raan kony luoi tou th
Name of participant:
Rin raan lui:
Date:
Akol niin:
Signature/Thumb print:
Thany:
Name of person taking consent:
Rin raan loiken:
Date:
Akol niin:
Signature/Thumb print:
Theny:
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SHORT TITLE OF DOCUMENT, Pneumonia Diagnostics Project [36]
Appendix 3: Stage 1 Research FGD Participants Responses
Results
Theme 1: CBDs Knowledge and Management of Pneumonia in the Local Health Situation
Felt Need, Common Illnesses
18 of the 24 respondents gave their views on what they felt was the common childhood disease in the community and 12 of the 24 responded that pneumonia was the most common disease; malaria and diarrhoea were each mentioned by three respondents.
The full responses for the 18 respondents are as follows:
R. Now among three diseases, pneumonia, malaria and diarrhoea which disease is most
common in your village?
Twelve respondents on pneumonia:
SSP1F1R7 ………………Pneumonia is the most common in our area because mothers do not
take good care of the children. This is because, they don’t have knowledge of preventing
pneumonia, like keeping their children in a warm place not to get cough.
SSP2F2R2. Yes, pneumonia is the most common killer disease in the area of my work
because; children are always exposed to cold weather or to dusty living conditions
SSP2F2R4. Yes, I think pneumonia is the most common disease that is killing children less
than 5 years of age because mothers do not know how to protect their children from
pneumonia; it is the most dangerous disease in our community.
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SHORT TITLE OF DOCUMENT, Pneumonia Diagnostics Project [37]
SSP2F2R6. [A big smile before responding] Pneumonia is another dangerous disease in
children less than 5 years of age and we are not able to give good treatment, because
enough drugs are not given to us.
SSP2F2R7. In my site, the common disease they seek treatment for is pneumonia because,
children are normally exposed to the cold weather and that makes most mothers to come for
the treatment.
SSP2F2R8. The common disease in my field of work is pneumonia because most children
suffer from cough, chest in drawing, ribs curve, fast breathing which most of them complain
about.
SSP3F3R3 Pneumonia is the most common disease in my area, which affects children under
5years old. This is because some mothers do not take good care of children during cool
weather.
SSP3F3R4 Pneumonia is the most common disease, which affects many children under 5
years old, and this makes them seek treatment from me, to be given amoxicillin tablets. The
reasons being some mothers are illiterate and it is hard to protect their children from bad
weathers.
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SHORT TITLE OF DOCUMENT, Pneumonia Diagnostics Project [38]
SSP3F3R5 Pneumonia this is because most parents expose their children to cool weather and
also they do not bath children using hot water and they let their children play in ponds,
which make them to suffer from pneumonia.
SSP3F3R6 Pneumonia is the most common disease in my area, this is because most parents
are not aware of the disease called pneumonia and this makes it hard for parents to take
good care of their children.
SSP3F3R7 [Smiling] Pneumonia is the disease which affects children under 5 years old the
most. This is because mothers do not take good of their children by exposing them to cool
weather and also by bathing them at wrong hours for example at night, also they fail to
cover them using blankets which encourages pneumonia in this area.
SSP3F3R8 Pneumonia is the most common in my area, this is because some parents do not
have knowledge about pneumonia and this encourages pneumonia to be wide spread in my
area and this is why many parents come to me for treatment.
Three respondents on malaria
SSP1F1R4 Well, Malaria is the most common one in this area because of mosquito bites and
also many people lack mosquito nets and they come to me seeking for treatment.
SSP2F2R1…………Malaria is the most common disease because, during wet season, there are
many mosquitoes as a result of rain therefore, mothers fail to protect their children from
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SHORT TITLE OF DOCUMENT, Pneumonia Diagnostics Project [39]
mosquito bite by using LLINs because, they do not know what causes malaria but it is
mosquito bites
SSP3F3R1 Malaria, the reason being a lot of mosquitoes during rainy season that causes
malaria in children less than five years of age
Three respondents on diarrhoea:
SSP2F2R3. I think [scratching his head] diarrhoea is the most common disease in my area of
work because many caretakers bring their children less than 5 years of age seeking
treatment for diarrhoea.
SSP2F2R5. To me, the most common disease is diarrhoea because, most of the children eat
dirty food and this causes diarrhoea in children less than 5 years of age.
SSP3F3R2 Diarrhoea this is because of poor sanitation in the areas where parents fail to
practice good sanitation at their homes
CBDs Knowledge on identifying signs and symptoms of pneumonia
Responses of CBDs who demonstrated basic knowledge on identifying and examining a child for the common signs and symptoms of pneumonia:
SSP1F1R2: Fast breathing for instance when mother comes with the child, I am in a position
to know that the child has pneumonia through his or her breathing.
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SHORT TITLE OF DOCUMENT, Pneumonia Diagnostics Project [40]
SSPF2R1: Cough is a sign and symptom of pneumonia I have to use respiratory timer and
respiratory beads to examine whether the child has pneumonia or not and if it reads red that
means the child has pneumonia I can give treatment Amoxicillin depending on the child’s
age.
SSP2F2R2: In that case, for me I have to observe or assess the child whether child has fast
breathing and cough or not, and if he or she has those signs and symptoms it means the
child has pneumonia and he or she is eligible to be treated using amoxicillin depending on
the child’s age. However, before that I have to examine the child using respiratory timer and
respiratory beads.
SSP2F2R7: For me I normally use respiratory timer and respiratory beads to find pneumonia
in children less than 5 years of age because, all children with coughs are suspected to have
pneumonia.
SSP3F3R2 For me, the child looks dry, with chest in-drawing, when there are “curves” in the
ribs; and fast breathing, these are common symptoms of pneumonia for a child suffering
from pneumonia and at that point CBDs will be able to know that a child has pneumonia.
SSP3F3R3 Pneumonia has different symptoms such as “ribs curve”, restlessness, chest in
drawing, high fever and also fast breathing these are common symptoms of pneumonia.
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SSP1F1R6…”A child with pneumonia has fast breathing and also ribs curve in-wards”
therefore I manage the child by giving him or her medicines to take in my presence and if
child does not start vomiting am sure he/she will get better.
Responses that aimed to describe CBDs knowledge on identification of danger signs in a child with pneumonia
SP1F1R2…I ask about the duration of sickness and whether child can eat something like
food, milk and water. After that I take the respiratory timer or coloured counting beads to
examine for pneumonia, if I discover that the child has pneumonia, I give amoxicillin tablets
for five days.
SSP2F2R6 Chest in drawing is also a common sign and symptom for pneumonia in children
less than 5 years of age. A child with chest in drawing has a danger sign and such a child is
given the first treatment and sent to the nearest health facility for additional check up by
nurse or clinical officers.
SSP3F3R8 The common symptoms of pneumonia are fast breathing, cough, high fever these
are danger signs in a child who has suffered from pneumonia.
The study also found that most CBDs demonstrated that they are able to correctly use the two diagnostic devices, ARI timer and counting beads to count a child’s breathing rate, and make decisions to prescribe antibiotic treatment for pneumonia:
Responses on device usability, correct use of ARI timer and counting beads
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SHORT TITLE OF DOCUMENT, Pneumonia Diagnostics Project [42]
SSP1F1R8.……….I look for signs and symptoms of pneumonia, I also use respiratory timer and
coloured counting beads to diagnose pneumonia..
SSP1F1R2 I detect pneumonia when the mother of the child comes to me and explains the
signs of the sickness and I diagnose whether a child is suffering from pneumonia by using
respiratory timer and counting beads.
SP1F1R2…I ask about the duration of sickness and whether child can eat something like
food, milk and water. After that I take the respiratory timer or coloured counting beads to
examine for pneumonia, if I discover that the child has pneumonia, I give amoxicillin tablets
for five days.
SSP2F2R1: For me, I have to welcome the caretaker to sit and I give him or her some drinking
water, then he or she will explain the child’s problem and if it is cough, I have to tell the
mother to breastfeed the child whether the child will cough or not before I decide. Cough is a
sign and symptom of pneumonia I have to use respiratory timer and respiratory beads to
examine whether the child has pneumonia or not and if it reads red that means the child has
pneumonia I can give treatment Amoxicillin depending on the child’s age.
SSP2F2R7: For me I normally use respiratory timer and respiratory beads to find pneumonia
in children less than 5 years of age because, all children with coughs are suspected to have
pneumonia.
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SSP2F2R4: Yeah, I count the respiratory beads and respiratory timer to look for pneumonia.
When the count reaches the red point, the child has pneumonia in that case I have to give
treatment to the child by giving him or her amoxicillin tablet.
SSP2F2R1. For me to know a child who is suffering from pneumonia, I normally use
respiratory timer and respiratory beads to come up with accurate results. If the respiratory
beads count stops at red, it means the child has pneumonia; I can now give the treatment
using amoxicillin depending on the child’s age.
SSP2F2R2. …………. Yes I treat pneumonia using amoxicillin, but before treatment I have to
examine the child using respiratory timer and respiratory beads to identify the child’s
sickness.
SSP2F2R3: Yeah they normally come to me asking for treatment and that enables me to use
respiratory timer and counting beads to diagnose pneumonia.
SSP2F2R5. Well, for me, they normally come to me to ask for treatment of pneumonia, and I
have to tell the caretaker to remove the child’s cloth then I begin to examine the child using
respiratory timer while counting beads before giving drugs for pneumonia.
SSP3F3R6 If a child is brought to me, first I welcome parents, and mother and child and then
I ask the name, the age and also the duration of sickness. I have to know the age of the child,
and I take the respiratory beads according to the age, and with the respiratory timer I start
examining the child and if the respiratory timer beeps twice while on red beads, I give
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amoxicillin tablets because pneumonia is detected. I give amoxicillin tablets for child to take
one dose before going back to the house.
SSP3F3R7 You look at the child and examine the child using respiratory timer and respiratory
beads and if red sign is reached, pneumonia is said to be present and you treat using
amoxicillin.
SSP3F3R8 I welcome the caregiver and ask him/her some questions, I remove the clothes off
the child and examine using respiratory beads and respiratory timer and treat using
amoxicillin if find that the child has pneumonia
SSP3F3R3.I use respiratory timer and respiratory beads to diagnose pneumonia and detect
whether a child has pneumonia or not and after that I give amoxicillin tablets for the child to
take?
SSP3F3R8. I use both coloured counting beads and respiratory timer to diagnose pneumonia
in children under 5 years old.
SSP3F3R2 I use respiratory timer and coloured counting beads to diagnose pneumonia and
after I find the signs and symptoms of pneumonia I give amoxicillin tablets for treatment.
SSP3F3R3. Yes, I use coloured counting beads and respiratory timer to diagnose pneumonia
before I give amoxicillin tablets for treatment.
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SSP2F2R1. I diagnose pneumonia through the explanations given by the caretaker. I ask him
or her for the duration of the sickness; “How long has this child been sick?”
CHWs Accessibility, Community Engagement in iCCM and Community Treatment Options
Responses indicating CBDs, availability and positive attitude towards community management of childhood pneumonia
SSP1F1R5 Yeah I help children ranging from 1 year to 5 year olds who have suffered from
pneumonia and malaria.
SSP1F1R3 I go to their homes and see how the children are feeling, if there is no change, I
advise the parents to seek for further treatment, or I can do another diagnosis to check
whether the child still has pneumonia.
SSP1F1R5 I attend to all children at the community level, because it is my responsibility to do
it and I was chosen by the community to do this work and to improve the lives of their
children.
SSP2F2R3. Yeah, I attend to all the children in the community because the community
selected me to help children less than 5 years of age. I was trained by ICCM team to give the
support needed by my people so; I have to serve all of them if there are enough drugs.
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SSP2F2R4. After giving the drug for pneumonia, I go to visit them in order to give more
advice on how they will protect their children from getting pneumonia. For example, to keep
their babies away from cool weather and smoking fire.
SSP2F2R1: Yes, I manage to carry out my entire task assigned to me by Malaria Consortium
because, I have to save my people and that is w