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A MANUAL FOR SOSAS ENUMERATORS

Introduction to the enumerators’ manual

This manual is intended to serve as an aid to introduce SOSAS, the Surgeons OverSeas Assessment of Surgical Need (SOSAS) to the selected/recruited interviewers. This document will provide guidelines and background information for almost all questions. Explanation of the questions may need to be adapted to local expressions and cultural beliefs or customs, furthermore translational aspects need to be addressed before implementing SOSAS.

The introduction to the topic and brief section on ethics and methodology is elaborated with extra information specifically important for the interviewer. This information is found in italics. The manual attempts to elucidate the methodology individual interviewers should employ in order to best collect high quality data.

The outline for the rest of the manual is the assessment tool itself; SOSAS version 3.0, which will be used in Sierra Leone. Additional information and more extensive explanations for certain questions can be found in this manual which will refer to the questions of the SOSAS version 3.0. These explanations will not appear in the SOSAS tool utilized during the interview itself, and it is therefore imperative for interviewers to be familiar with this information prior to administering interviews. In addition to these explanations, the SOSAS tool itself contains some definitions of major importance as well, visible during the administration of the interview on the iPad screen.

A separate section is written about the iPad use. Although we experienced in the pilot in Sierra Leone that the iPads, due to the possibility of conditional formatting, are really an asset to the quality of the interviews, SOSAS can be done without this technology. And the paper format of SOSAS 3.0 as provided in this manual can used instead.

This manual is provided to assist in training individuals to become capable of accurately and efficiently administering the SOSAS tool, and it is therefore intended to be discussed during the interviewers’ training period. Separate logistical and training guidelines are also provided by SOS for the primary investigator and the executing investigator or field supervisor(s).

We would like to note that active involvement of the recruited interviewers during this training process is important and is to be encouraged. Active participation by the training interviewers will ensure that they have ample opportunity to become comfortable and confident with the survey and to receive clarification regarding aspects of the SOSAS tool they find confusing or challenging. Additionally, it will be imperative to obtain the interviewers’ input regarding the survey in order to include the culturally sensitive references necessary to maximize the accuracy and potential output capability of the SOSAS. The field coordinator or executing investigator can test the involvement of the interviewers during the training week and can also form the interview teams based on language and technical skills and personalities.

We, SOS, hope to establish and maintain lasting and worthwhile collaborations with all of you who are working on improving surgical services all around the world. Comments and remarks regarding SOSAS are welcomed, as we strive to make this manual a living document aimed at helping to discover, follow and address the surgical burden faced by the residents of low and middle income countries.

Kind regards,

Reinou S. Groen

SOS International Surgical Fellow

reinou@

INTERVIEWERS MANUAL FOR SOSAS

SOS Assessment of Surgical Need (SOSAS)

Last update: Freetown, January 7th, 2012

Reinou Groen MD

SOS International Surgical Fellow

reinou@

Surgeons OverSeas (SOS)

225 E 6th street, Suite 7F, New York, NY 10003

Telephone: +1 917 603 0479 (USA)

Telephone: +31 6 403 50 918 (Netherlands)

LIST OF ABBREVIATIONS AND DEFINITIONS

Cluster The geographic area where the households will be assigned to be interviewed

Disability A physical problem that impacts your life, or makes it difficult to carry out your daily activities

Enumerator Interviewer

EA Enumeration Area, the smallest geographic area chosen as clusters

File Maker Go The application on the iPad which shows the Survey and safes the records

GPS Global Positioning System

GIS Global Information System

Household representative Person who is responsible for the household members. Depending on the culture this can be a male or female.

Household member Every person who eats from the same pot as the household representative and slept in the household the night before the visit of the enumerator

Interviewer Personnel working for SOS to interview respondents with SOSAS

Major procedure A procedure which requires regional/general anesthesia

Minor procedure Dressings, wound care, punctures, suturing and I&D

Operation A surgical procedure: can be further distinguished in major and minor

Primary health facility Health facility without functioning operating room

Random Not influenced by choice, totally by chance, unsystematic and indiscriminate

Random calculator Method to generate random numbers for assignment of household members

Respondent Person being interviewed

Secondary health facility Health facility with at least one functioning operating room, surgery is provided by (general) medical doctors without surgical specialist training.

SOS Surgeons OverSeas

SOSAS SOS Assessment of Surgical Need

Surgery A surgical procedure is; wound care, suturing, incision, excision or otherwise manipulating of tissue, in a safe and painless way.

Surgical care Including surgery, pre- and postoperative care and the advice surgeons give during their consultations

Tertiary health facility Health facility with specialized surgical care, like Surgeons, Orthopedics, Gynecologist and Urologist.

Table of content Page

Introduction to the interviewers manual 2

Contact information 3

Abbreviations and list of definitions 4

Table of content 5

I INTRODUCTION 6

II ETHICS AND COLLABORATION 7

III METHODS

8

IV GENERAL INSTRUCTIONS

V SOSAS VERSION 3.0 EXPLANATION

Household information: 12

A. HOUSEHOLD INFORMATION

B. HEALTH FACILITY INFORMATION

C. LIVING HOUSEHOLD MEMBERS

D. DECEASED HOUSEHOLD MEMBERS

Individual information: 14

E. GENERAL INFORMATION

F. HEAD / FACE / NECK

G. BREAST / CHEST

H. BACK

I. ABDOMEN

J. GROIN

K. EXTREMITIES

L. MENSTRUAL CYCLE AND PREGANCIES

VI FINAL NOTES 17

LATEST SOSAS VERSION see or email reinou@

SOS Assessment of Surgical Need (SOSAS)

A Survey to Study the Prevalence of Surgically Treatable Conditions

I INTRODUCTION

The prevalence of surgical treatable diseases in low income countries is currently unknown. We are seeking information about people in the community who currently have a surgically treatable condition. Or who has ever had an operation, or has died in the last year following a surgical condition. Surgical operations have the capacity to help treat those with different types of wounds, masses, deformities, injuries, or obstetrical complications, with the opportunity to offer both curative treatments and lifesaving care. We are seeking to document the number of surgically treatable conditions in this area in order to eventually help secure access to these helpful operations.

The official definition of surgical care is defined as: Surgical care is considered a surgical procedure (wound care, suturing, incision, excision or otherwise manipulating of tissue), in a safe and painless way. Rather than focusing on one disease, surgical care is procedure oriented and has a large number of diagnoses which need different surgical procedures. Surgical care is not limited to an age group or sex and has different outcomes.

The first 4 sections of SOSAS, are questions for the household representative. These Sections Include; A Household Information; B Health Facility Information; C Living Household Members; D Deceased Household Members.

The following sections are E General Information followed by sections F till L. These questions are to be asked to two different randomly assigned household member. These questions are anatomically organized in; F Face / Head / Neck; G Breast / Chest; H Back; I Abdomen; J Groin; K Extremities. Section L Pregnancies and menstrual cycle is only for female respondents. In the printouts and the iPad format you will always have a double copy of section E through K, to be able to administer this interview to two separate household members.

II ETHICS AND COLLABORATION

This survey is done in collaboration with local medical doctors and surgeons. Approval is granted from the Ministry of Health (MoH). Introduction letters from the MoH, must be presented to the village chiefs and/or local administrators before interviewing households. All District Medical Officers are informed about the survey and the visit of enumerators to their district, they will also be contacted at the time of visiting the districts for interviewing.

Informed consent will be obtained from all participants in the study. Individuals’ rights for refusal of collaborations will be respected at all times during the study. For individuals under the age of 18 the informed consent will be asked to one of the parents or guardians and the individual her/himself will be asked assent as well. You will be provided with the consent forms which need to be signed or thumb-printed or crossed by the respondents. A sample is in appendix 6.

“Informed consent” signifies that the person interviewed (“responder”) both understands the purpose of the questions and prefers to participate. Obtaining informed consent is imperative in order to receive correct information and provides the opportunity to establish a good relationship with the responder.

When surgical problems or life threatening diseases are identified during the survey, the person or guardian is informed about possible treatment options. Depending on the urgency, referral to the local health facility is arranged and/or a letter of referral is written. This is the task of the field coordinator. Enumerators can contact their field coordinator in case they meet a very ill person. The field supervisor is the one who will arrange transport if immediate referral is needed.

Privacy and confidentiality of results means that the answers the respondent gives are not shared with anybody. A responder’s privacy should be honored at all times and information concerning the (surgical) condition should not be shared with anyone except persons designated by the responder. This means that the interview needs to be held at a place where it cannot be overheard, although a responder is free to choose someone familiar with him/her at the time of interview.

The data is secured in the iPad with a code, which is only known by the research team.

III METHOD

In the assigned village or cluster, separate households will be assigned for investigation. The person in charge of each household must be identified, as he or she will act as that household’s representative, answering the questions of section A, B, C and D of SOSAS version 3.0. Depending on the culture and availability, the representative may either be male or female.

When entering a household, adhere to all known local customs. Building trust and collaboration begins by using appropriate greetings and friendly manners. Ask politely if the head of the household or the household member in charge is available for you; if he or she is not available, ask for another adult of the household. Directly identify yourself as an interviewer and show your SOSAS ID card. Clearly explain why you are here and what you want (refer to the introduction, which is also written in the SOSAS-forms).

After the interview with the household representative, two of the household members are randomly chosen with a random number calculator or random number table, which is explained in detail later. Both household members are interviewed with sections E, F, G, H, I, J, K and the last section (L) for females only.

A household member is any individual that is regularly eating from the same pot. If this definition is not giving a clear distinction you can add ‘and slept in the household the previous night before the interview’. This might be needed for males with more houses and wives. The male will be assigned to the household he slept in the night before the interview takes place.

In some cultures, it is not appropriate to count people; therefore, appropriate wording must be utilized to ensure that a list of household members can be generated. The household representative should be informed of the reason for counting and (s)he should understand that all collected data is de-identified and thus remains anonymous and cannot be tracked back to his or her household. Furthermore, this information is not used for political reasons. Once again, the trust of the household representative must be preserved for a successful interview.

Proper identification of the household denominator; the number of members in the household (including their sex and age) is very important. This process should be done securely with the household representative in order to determine randomly the two who need to be interviewed. Only those who regularly eat from the same pot in the household and who slept the last night in that household are considered a “household member” and eligible to be interviewed.

For example, a niece who eats with the family and slept the night before the interview in the household is eligible. Additionally, a brother who is not available because he is searching for work elsewhere in the country for the last half year is not eligible. However, someone who is not available for the questionnaire due to work outside of the household during the day but sleeps in the household is eligible. This is very important to ensure random respondents!

The random assignment of the two household members is done in the following way:

Step 1. Check if all information is filled in for all the household members.

Step 2. The total number of household members should be the same as the total number of tabs you have filled.

Step 3. Check the order of the household members. The information of the oldest household members should be

first followed by all the household members organized by age ending with the youngest person, make sure

you ask for disabled/sick household members, babies and neonates and include them.

Step 4. Make corrections before you go to step 5.

Step 5 Remember the total numbers of living household members. Use either the Random Number Generator to get a number between 1 and the total number of living household members. The first number which appears corresponds with the tab number of the first household member to interview. Repeat the procedure also to assign the person for the second interview.

For children under the age of 12, a parent or guardian should be asked to help answer the questions. If the child is assigned for interview but not available it is permitted for the parent/guardian to act as surrogate, in other age groups this is not allowed. A person can always choose to have a guardian around during the interview to help, but the person him/herself should be available as well. In the age group between 12 and 18, the child should tell whether he/she wants a parent or guardian around for the interview or not.

In total 1875 households need to be visited (section A, B, C and D) and up to 3750 interviews (sections E, F, G, H, I, J, K and L) are needed to be done to get an appropriate sample for a founded conclusion on the prevalence of surgical treatable conditions in Sierra Leone.

Translation into Krio and other local languages will be discussed during the training sessions.

We would like to note that active involvement of the recruited interviewers during this training process is important and is encouraged. Active participation by the training will ensure that one becomes comfortable and confident with the survey and to be able to give clarification regarding aspects of the SOSAS tool that might be confusing or challenging.

IV METHODS OF HOUSEHOLD SELECTION

In total a minimum of 25 households need to be interviewed per cluster. The clusters are identified with the provided maps and are called Enumeration Area or EA.

The essence of the selection of the households is twofold:

1. The selection needs to be random, meaning that you should not choose the households based on their looks or otherwise, but completely random.

2. The selection needs to be a good representation of the EA, it needs to be well spread over the entire area. If you would just concentrate on one part of the EA, you might end up interviewing all the households belonging to one family with their characteristics.

If an Enumeration Area (EA) has more than one locality or village, the enumerator needs to divide the total of 25 households over the different localities. Asking about the approximate number of households can make you divide the number per locality appropriately. If for example an EA has two localities and both have about the same size you can interview 12 at one locality and 13 at the other locality. If, on the other hand one locality has only 25 households and the other 75 households you can do about 7 in the smaller locality and 18 in the bigger locality. The process described below will be taking place in both localities.

The selection of the first household is a random process based on a quick assessment of the area.

For villages/neighbourhoods of 50 dwelling structures or less:

Number the structures (with charcoal or calk-white) and select the first household based on the use of the random calculator of the iPad (put 1 for minimum and for maximum the number of structures you counted). After the interviewing the first household you exit the structure and continue to the right. Leave one dwelling structure between and approach the 2nd structure.

For villages/neighbourhoods of more than 50 dwelling structures:

A if there is enough detail on the EA map: divide the selected village/neighbourhood into 4 sectors on the map, or create a sketch of the village/neighbourhood with using identifiable landmarks (roads, church, mosques, schools, markets…) with the help of a local representative from the village/neighbourhood and divide it into 4 sectors (or more of approximately the same household size. (See attach 3)

B Select one sector randomly using the iPad: random calculator

C If the selected sector has approximately 50 households the enumerator will number them and randomly select the first structure to interview the first household. If the selected sector has still more than 50 structures the steps A-C will be repeated.

If there are more enumerators available for one EA, the EA will be divided into the number of enumerators available. Also the total of 25 household numbers will be divided by the numbers of enumerators available. Each enumerator repeats the process of identifying the structures, numbering them and randomly selecting the first household in their section. Continuing with the process of exiting the structure and continue to the right. Leave two dwelling structures between and approach the 3rd structure. If the total community of the EA is very small: lets say 25 households, all households will be interviewed and these process of selection is not needed.

V GENERAL INSTRUCTIONS OF THE QUESTIONNAIRE

All questions must be answered unless otherwise indicated. Choose with the multiple chose options the condition which is best fitting the description of the respondent’s answer. If there is an option ‘Other_______’ please note what the correct answer for that respondent is. In that way we can accommodate the survey to the need.

Only complete surveys can be analyzed and therefore it is most important that the survey is checked at the end of the interview. In the paper format this is indicated with the space for date/name and signature. This signature indicates that you completed that survey part and that there is not information missing, furthermore you guarantee that the information is correct to the best knowledge of what the respondent told you.

On the iPad the same procedure is followed, the date and your name are automatically saved by checking the box provided.

It is very importance to have correct, complete information with this survey. The results are used to advise ministries of health and hospital directors/managers and therefore the information collected should represent the reality. If the field coordinator notifies that your surveys are not complete, are done to fast, rushing through the questions, not waiting for appropriate responses from the respondents, you will be given a warning. If after the warning the quality of your interviewing is not getting better, you can be expelled from further interviewing.

It is important to let the interview be as natural as possible; it is basically a conversation about the health of the respondent, structured with the questions we put in this survey. The person needs to be comfortable with you to be able to express all the health problems we are interested in. Therefore don’t give the impression that it is a test, or that the person provides ‘wrong’ answers. Tell them to feel at ease and that it is not a problem for you to repeat a question or explain it better if the person doesn’t understand what you are asking.

Specific instructions for the paper format of SOSAS 3.0:

• Items in bold are the new questions.

• Under the bold items the questions to be asked.

• [Items in italics are instructions to the interviewer, containing definitions, explanations or emphasis. You can use this information to explain the question better if the respondent does not understand you. ]

|Paragraphs in the boxes are explanations during the interview for the respondent. Read these out loud and be sure that the person |

|understands the explanation. |

How to mark your answer?

• The questions in the paper format can be answered by using the code provided at the question.

Example: Question D2. Sex: Male = 1 Female = 2

• Or the question can be answered by filling in the blank

Example: Question E6. Education

_x_None

___Primary (etc)

• Or by checking the right box in the table:

Example: Question F2.1 Face / Head / Neck specifics:

F2.1. Face / head / neck specifics:

|Problem 1 |Problem 2 |Problem 3 |

|x | | |

| | | |

| |x | |

| | | |

| | | |

| | | |

Tell me what problem you have had.

Wound injury related

Wound not injury related

Burn

Mass or growth / goiter

Deformity congenital

Deformity acquired

• If a question can be skipped this is indicated, see question F5.1 for an example.

• All questions need only one best answer, with the exception of questions C1.1, C2.1 and C3.1 asking about the transport means to the different types of health facilities. You can mark more than one option if that is according to the response of the household representative.

Specific instructions for the iPad format of SOSAS 3.0:

• Items preceded with the Question number are indicating the subject

• The question under the Question number, in a smaller format, is the actual questions to be asked.

• Items in the gray boxes with red letters are instructions to the interviewer, containing definitions, explanations or emphasis. You can use this information to explain the question better if the respondent does not understand you.

• Paragraphs in the boxes are explanations during the interview for the respondent. Read these out loud and be sure that the person understands the explanation.

How to mark your answer?

• Answering questions are possible by touching the round button in front of the best response. Example question A3 village type.

• Some answer can be given by touching the answer space and using the appearing keyboard. Example: question B. Number of household members.

• Other questions have predefined answer options. Example: question E 8, tribes.

• If a question can be skipped, the question will disappear.

• All questions need only one best answer, with the exception of questions C1.1, C2.1 and C3.1 asking about the transport means to the different types of health facilities. You can mark more than one option if that is according to the response of the household representative.

VI SOSAS EXPLANATION – household information

Section A through D is information about the household, filled in with the answers from the household representative. In the iPad version this is the first, gray tab, called ‘Household’.

All the questions from a section are numbered with a letter and a number of the question. So section A starts with Question A1. Section B starts with question B1 etc.

Section A HOUSEHOLD INFORMATION

This includes the information on the cluster, household code and the consent of the household representative.

Questions included: How many visits were needed to that household? Where was the household? Was it rural/urban or a slum area? Who was the interviewer and does the household representative give consent to participate in this survey?

Question A1 has a ‘yes’ or ‘no’ option and is the answer for the fact of the household a replaced household is, based on the fact that the initially assigned household was not available. In each cluster 25 households need to be interviewed.

Section B LIVING HOUSEHOLD MEMBERS

The household representative will give you the household denominator; how many people live in the household you are visiting. Remember well the definition of a household member: ‘the person who eats from the same pot.’

Age and sex is asked. Sometimes age must be provided with developmental milestones for children and event calendars for adults. (See appendixes 4 and 5)

After collecting the information on the household denominator you can go through the following steps to assign 2 household members for the questions in section E-L.

Step 1. Check if all information is filled in for all the household members.

Step 2. The total number of household members should be the same as the total number of tabs you have filled.

Step 3. Check the order of the household members. The information of the oldest household members should be

first followed by all the household members organized by age ending with the youngest person, make sure

you ask for disabled/sick household members, babies and neonates and include them.

Step 4. Make corrections before you go to step 5.

Step 5 Remember the total numbers of living household members. Use the Random Number Generator to get a number between 1 and the total number of living household members. The first number which appears corresponds with the tab number of the first household member to interview. Repeat the procedure also to assign the person for the second interview.

Section C TRANSPORTATION MEANS

Section C contains questions on the travel time and way of the household members to the different hospitals.

Each type of health facility has 5 questions: What is the transport way? Bus, car, on foot etc. more than one option is possible if someone first needs to walk before entering the bus. How long does the transportation in total take without delays (waiting/traffic congestion) How long do you probably have to wait? What does the transport you just told me about cost? Are you able to provide that transport cost for a sick household member?

Definitions used:

Primary health facility: Health facility without functioning operating room

Secondary health facility: Health facility with functioning operating room

Tertiary health facility: Health facility with functioning operating room and minimal one surgical specialist (Surgeons/Orthopedics/Gynecologist/Urologist)

During the training period the facility types per cluster will be discussed so that you are able to call the village/city where this type of facility can be found for the person to be able to respond

Time guideline: one person can walk 3 miles in one hour or 1 mile takes 20 minutes to walk

Section D DECEASED HOUSEHOLD MEMBERS

This section is also filled in with the household representative; the questions are to investigate the circumstances of deceased persons in that household during the last 12 months. If the household did not experience a household death in the last year (last 12 months) the questions are not asked. If more than one household member deceased in the last year you need to repeat the questions and fill the following tabs. Focus on one deceased household member before going to the next.

Questions about a deceased household member might trigger grief and other emotions. Stay calm and let the person first tell their story, before going into detail about the answers you need for the survey.

The following questions are asked: How old was the household member when s/he died? What was the sex of the household member? If she was a female, was she pregnant?

Question D3 is asking if there were any signs of surgically treatable conditions in the last week before death.

Ask all the options separately.

For neonates and babies it is very important to check if they had any sign of congenital abnormalities. Therefore the question: Did the child look normal and could it drink, urinate and defecate normally after birth is important.

Question D4, D5, D6 and D7 are very similar as what you will find in the sections F-K.

D4: Did the deceased household member look for healthcare? Yes / No followed by D4.1 did the deceased household member look for a traditional healer? It is important to ask these questions without judgment or presumptions.

D5: (if the answer to D4 was ‘Yes’) what type of healthcare was received? With the answer options:

___None / no surgical care

___Major procedure (a procedure which requires regional or general anesthesia)

___Minor procedure (dressings, wound care, punctures, suturing and incision and drainage I&D)

D6: (if D4 is ‘No’, or D5 is ‘None / no surgical care’) What was the reason not to have surgical care:

With the answer options:

___No money for health care

-this includes no money: for the procedure/supplies/equipment/hospital stay etc.

___No (money for) transportation

-either there was no money available to pay for transportation or no vehicle came to the village etc.

___No time

-this can include: no time because of farming season, or because the patient died before the arrangements

___Fear / no trust

-fear for a surgical procedure or no trust in the personnel

___Not available

-the needed surgical procedure was not possible because there was a lack of facility, personnel or equipment

___No need

-the condition was not surgical

In case the person had care from a traditional healer, you need to ask why (s)he didn’t go to a health care facility and mark that answer. If you did mark a problem from the list in Question D3 (everything but ‘none of the above’) it is not possible to answer question D6 with ‘No need’.

D7. Where did the household member die? At home/in the health facility or elsewhere?

The last section is an open box where you need to give a short explanation of the circumstances during the death of that household member.

Continue with the next tab Question D1.2, if there was a second deceased household member in the last 12 months before the interview.

VII SOSAS EXPLANATION – Individual information

Section E through L is information about the two individuals and therefore in the printed SOSAS these sections need to be provided twice for each household. The copies of the paper format should therefore provide section E – L twice.

In the iPad version this section is provided twice divided into 6 different tabs (one in dark blue, called Survey 1 part I, II and III, and one in light blue, called Survey 2 part I, II, III). All the questions from Survey 2 have an extra x in their number. Example: Question E1 in Survey 1 part I is the same question as Question Ex1 in Survey 2 part I, question G1 in Survey 1 part II is the same as Gx1 in Survey 2 part II. The x after the E differentiate the two responses also the different colors of the tabs in the iPad are letting you know which questionnaire you are dealing with.

Survey 1 and Survey 2 have exactly the same questions and therefore are explained here ones.

Section E GENERAL INFORMATION

Question E1. Household list number is the number provided in front of the household list, which you completed earlier with the representative of that household. At the end of this answer space you find again a box you can touch to mark that this individual is replaced, from the initial assigned household member. You are allowed to replace a household member if the member who was initially assigned not available is after the third visit to the household.

You should not replace household members who refuse to participate because they don’t want to give their consent.

Section E starts after the household member list number, sex and age with an introduction on the survey to the individual you interview. It is very important to have full cooperation and to achieve this you need to invest in the person by explaining the reason for your visit. A person who fully understands the reason of the survey is more likely to cooperate and give his/her consent.

Minors (individuals under the age of 18) need their parents or guardians (often the household representative) to consent for them, and they need to give assent themselves as well. (Questions E4 and E5) Only for children under the age of 12, the parent or guardian can respond without the present of the child. In that case you mark E5 as Surrogate consent only. If the child is around you ask also the permission to participate (assent, question E5) and the interview is health together with the guardian/parent. If the child is older than 12 the guardian/parent can be around for the interview depending on the wish of the child.

The following questions are about some general demographics; education, illiteracy, occupation and ethnicity and duration of the stay in that household. (Questions E6-E9)

Questions E10-E13 are questions we will not analyze in depth. Those questions are asked to help the person you interview to start thinking about their health. It is important for the person to be comfortable with you and the interview should be as natural as possible; just like a normal conversation about their health.

After question E13 an explanation about surgery follows. Read this for the respondent and explain the next step as is provided in the text box (‘I’m now going to ask you about all the surgical problems you’ve had in your lifetime. We’ll start with your head and move all the way down to your toes.’)

The following sections are ordered by anatomical location understandable for lay-persons.

Section F FACE, HEAD OR NECK

Section G CHEST AND BREAST

Section H BACK

Section I ABDOMEN

Section J GROIN, GENITALIA AND BUTTOCKS

Section K EXTREMITIES

Section L PREGNANCUES AND MENSTRUAL CYCLE

IMPORTANT:

Each section starts with a general question about that anatomical location, if the answer to that question is ‘No’ all the other questions can be skipped. However be careful, the question cannot simply be read, you need really to investigate if the person had a problem with that anatomical location you are talking about. Therefore start with:

1. Have you ever had a problem with your [face, head or neck]?

2. If ‘No’ oke, you never had a wound or burn in your [face, head or neck]? Never had a mass,

problem with eating/drinking? Never had a problem with your eyes or ears? Never had an operations in your [face, head, neck]?

3. If all stays ‘No’, you mark that in the first question and you continue with the following anatomical section.

1. Have you ever had a problem with your [face, head or neck]?

2. If ‘Yes’, tell me what happened?

3. Let the person tell their story while you check if that is one of the options given in the first question. If it is one of the options: mark yes and continue with the following questions to further investigate that problem.

4. If the explanation does not give the impression to be a surgical treatable condition you continue by saying: ‘I’m especially interested in whether you had a wound, burn, mass etc (see above)’ and mark the answer option appropriately.

The same way of asking the questions should be applied in the other sections (G-K)

If a respondent has more than one problem with an anatomical location you should mark them in a different tabs (iPad) / columns (paper interview), marked as problem 1, problem 2, problem 3. If there are more than 3 problems per anatomical section, mark the most recent most severe problems.

Always start with problem 1, next fill in problem 2 and as third fill in problem 3.

Section F (Face, head neck) and Section K (Extremities) start with a question to further specify the location of the problem. Furthermore section K has more questions and therefore the numbering is a little different.

The next question, Questions F/G/H/I/J/K-2 are always about what the problem is, categorized into surgical problems identifiable by the patient. Explanations and definitions are given as well next to the question.

Questions F/G/H/I/J/K-2.1 are about the type of injury / accident, answer options are provided.

Questions F/G/H/I/J-3 and K4 will give answer to the start of the problem of the surgical treatable condition. It will differentiate the year-time prevalence and the lifetime prevalence and is therefore very important.

Questions F/G/H/I/J-3.1 and K4.1 is to see if the problem is still present and will give information on surgical problems which are chronic.

Questions F/G/H/I/J-4 and K6 are like question D 4

Questions F/G/H/I/J-5 and K7 are like question D 5

Questions F/G/H/I/J-6 and K8 are like question D 6

These questions are explained earlier in section D.

Question K 5 is simply to indicate a broken or dislocated joint. Answer options are ‘Yes’ or ‘No’.

Questions F/G/H/I/J-7 asks about disability. Does the problem the respondent presents impact his/her life? Or does this condition make it difficult to carry out daily activities. The respondent might not be familiar with disability as such and therefore you can read out load the answer options. Also if the person feels ashamed due to the condition this should be marked. The answer options are gradual in order, chose the lowest answer applicable. Meaning someone can feel ashamed about his/her need in help for transportation, but you than only mark ‘I need help with transportation’. Another example: if someone needs help with daily living as well as transportation you mark the lowest answer applicable ‘I need help with daily living’.

SECTION L. PREGNANCY AND MENSTRUAL CYCLE

This section starts like the other anatomical sections with a screening question. Only the women who had a menstrual cycle in the last two years are to be interviewed with all the following questions. For girls under the age of 12 and males you can directly answer appropriately and as indicated skip the rest of the questions. As you can understand, these questions are about a private issue, ensure confidentiality of the information given by the woman.

Pregnancy questions:

L2: Gravida, how many times have you been pregnant? It is very important to take your time for this question, as the other questions make no sense if this is wrong filled out. Ask specifically for the including miscarriages and include that in the Gravida total number.

Question L3: are you currently pregnant? In some cultures the woman is not allowed to tell you that she is pregnant, until the abdomen shows her pregnancy. Try to get an honest response, but if the woman doesn’t want to tell, or doesn’t know whether she is pregnant, mark ‘I don’t know’.

Question L3.1 will only be asked if question L3 is answered with ‘Yes’. Bleeding during pregnancy needs a medical consultation and is therefore of importance.

Questions L4-L9 are about pregnancies and deliveries and on the iPad will only show-up if they are relevant:

L4. Gestational Age in Months, round it to the full months which are completed, it is just an estimation, round it to the full months completed. So 6.5 months (or 6 months and 2 weeks) is entered as 6.

L5. Parity: How many times have you delivered a baby? [Includes C-sections and instrumental deliveries]

L6. Home deliveries: How many babies were delivered at home?

L7. Health facility delivery: How many babies were delivered in a health facility?

L8. C-section: How many times where your babies delivered with an abdominal delivery / C-section?

L9. Instrumental delivery: How many times where your babies delivered with the help of instruments (Vacuum / Forceps)?

The question about breastfeeding

L10. Breastfeeding? Are you currently breastfeeding?

Period / Menstrual Cycle questions:

The following questions L11-L16 are about the menstrual period.

L11. Length of period: How long does your period last? (number of days)

L12. Regularity: Does your period come regularly?

L13. Intermittent bleeding: Do you have small bleedings in-between your period?

L14. Pain: Do you have pain during your period so that you cannot work?

L15. Pads or towels/cloths: Do you use pads or towels/cloths?

L16. How many pads/towels: How many sanitary pads do you use on the heaviest day of your period?

L17. Is there health care needed for any problem of the menstrual cycle? If the respondent doesn’t have any problem, there is no need for health care. Same for Question L17.1 Is there a need to go to a traditional healer?

L18. Are there possibilities for healthcare for menstrual problems. Anwer options are:

No money for the women to go, no means of transportation, no time (the woman needs to be at home to care for the children and the house) , Fear or trust problems with the health care given or there is no health care available.

It can be a combination of things, let the person than choose the most important factor.

The answer option: ‘yes, I will go’ is for those who have a problems and were planning to see a doctor and can make that happen (they have no barrier to go to a doctor.

L19. Do you use a family planning method at the moment?

L20. Type of family planning? [only if L19 is answered with ‘Yes’] What method do you use?

___ Contraceptive pills

___ Implant

___ Injectable

___ Intra uterine device

___ Condom

___ Other (surgical options)

This is the end of the questionnaire. As you see on your print-out or the iPads, there is at the end of each section a place where you need to put your signature (paper format) or need to check a box (iPad version). This gives you the opportunity and responsibility to check the survey for any omitting results, while you are able to correct them with the person you interviewed in front of you.

The end of each questionnaire (the household part and both Survey 1 and Survey 2, have an open space at the end of the questionnaire. This can be used for questions about some of your responses or if you want to document a medical story a bit more in detail for verification of the categorization you made.

VI FINAL NOTES

As you might have noticed, this survey will not make diagnosis as such, since it does not include a physical exam. It gives insight in the prevalence of the need for surgical consultations, and most likely interventions. The quality of the interview is very dependent on how well you know the questions and definitions. Please mark all your questions and remarks below, check if you understand each question and verify everything during the training to make sure that everything is clear for you before going into the field to interview. In the field the Field Supervisor and the Expat can help you also with questions based on situations. Your per diem allows you to use your phone during the interview and during the travel time you can come back on situations.

Kind regards, Reinou Groen (MD)

reinou@

SPACE FOR QUESTIONS AND NOTES

Attaches (these where the attaches I gave to the enumerators)

1. SOSAS 3.0 (in separate file)

2. iPad instruction (a power point attach – not in this file)

3. Map examples for selection of households (not in this file)

4. Developmental milestones (see below)

5. Event calendar (needs to be made based on the national / local regional situation)

6. Consent forms (needs to be made based on the national / local regional situation)

Developmental Milestones

Estimation of a child’s age:

Where a child’s age is unknown, the following methods may be useful in estimating the children’s approximate age.

1. Ask for particular events, harvest time, religious festivals or season of the child’s birth

2. Compare the child with other children in the village whose ages are known

3. The community midwife/nurse/SHO might be able to assist as they often have a register

4. Use the attained developmental milestones to approximate the child’s age:

Milestone attained: Estimated age:

No teeth, can’t sit alone 0-5 months

Has 1-6 teeth, can sit alone but not walk alone 6-11 months

Has 6-18 teeth, can walk and knows a few words 12-23 months fill in: 1 year

Has 18-20 teeth, walks well and starts to talk well 24-35 months fill in: 2 years

Walks, runs well, talks well but has not lost first baby teeth 36-59 months fill in: 3 years or 3 years

Starts loosing teeth 5 years

Female only:

Breast development (very start) 10 years

First menstruation 12 years

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