Manual of
Children‟s HealthWatch Data Collection
      Last Updated: October 2009
Table of Contents:

I. General Instructions
       Site Information                                                                           3
       Children‟s HealthWatch Site Responsibilities for Interview Data                            4
       Children‟s HealthWatch Interview Inclusion Criteria                                        6
       Guidelines for Children‟s HealthWatch Interview Format and Structure                       8
       General Instructions for Interviewers                                                      9
       Interview Guide Introduction & Protocol Memo Coding                                        11
       Page 1 Coding                                                                              12

II. Section specific Instructions
       Section A: Screening                                                                       14
       Section B: Developmental Questions                                                         17
       Section C: Demographics                                                                    20
       Section D: Employment                                                                      22
       Section E: Child Health History                                                            24
       Section F: Maternal Health                                                                 27
       Section F(2): Parent Height and Weight                                                     27
       Section G: Child‟s Household                                                               29
       Section H: Energy Questions                                                                32
       Section I: Household Food Security Scale                                                   34
       Section J: State or Federal Assistance                                                     37
       Section K: Resource Information                                                            40
       Section L: Outreach Program                                                                43

III. Surveillance Data Collection and Uses
        Surveillance Data and Flagging Procedures                                                 47

IV. Appendix
      Appendix A: Preferred Others                                                                51
      Appendix B: Sample Shift Log                                                                55
      Appendix C: Diagnosis Categories                                                            56
      Appendix D: PEDS Master Coding List                                                         58
      Appendix E: PEDS Chapter (F. Glascoe)                                                       59
      Appendix F: Sample Resource List                                                            60*
      Appendix G: Sample Outreach Database                                                        62*

This Manual of Operations should be printed single-sided and placed in a
binder so that protocol memos can be added and, when necessary, whole
sections can be removed and replaced without reprinting the entire manual.

*These page numbers reflect pages in the MOP without inclusion of the text of the PEDS chapter.

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Active Children’s HealthWatch Sites
Site, (Year joined/ended), Data Collection Setting, Affiliated Clinical Programs

Baltimore, Maryland (1998-2001 and 2004-present), ED and primary care clinic, Growth
and Nutrition Clinic
        Project Coordinator:
        Anna M. Quigg, MA
        Tel. (410) 706-8308
Boston, Massachusetts (1998-present) ED only, Grow Clinic for Children
        Research Coordinator:
        Katherine Joyce, MPH
        Tel. (617) 414-3580
Little Rock, Arkansas (1998-present) ED only, Growth and Development Clinic
        Site Coordinator:
        Kathleen W. Barrett, MSE
        Tel. (501) 364-2472
        Alt. (501) 529-1985
Minneapolis, Minnesota (1998-present) ED and primary care clinic, Children‟s Growth and
    Nutrition Clinic
        Site Coordinators:
        Joni Geppert, MPH, RD, LN
        Tel. (612) 873-4497 HCMC or
        (651) 201-3613 MDH
        Tu Quan, MPH
        Tel. (612) 873-6346
Philadelphia, Pennsylvania (2004-present), ED only, The Philadelphia Grow Project
        Site Coordinator:
        Jennifer Breaux, MPH
        Tel. (215) 762-7937

Inactive Children’s HealthWatch Sites
Washington D.C (1998-2000)
Los Angeles, CA (1998-2001)

Research Process and Protocol Oversight
Research and Policy Director:
Stephanie Ettinger de Cuba, MPH
Tel. (617) 638-5850

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•   It is the responsibility of the site coordinators to adequately train and periodically review
    each interviewer‟s performance so that the interviewer thoroughly understands, feels
    comfortable with and is able to efficiently administer the interview.
•   All interviewers must be trained to measure children using the site‟s standardized
    measuring board.
•   Observe new interviewers and provide feedback until new interviewers meet Manual of
    Operations standards.
•   Each interviewer should be observed every six months to ensure that adherence to
    protocols is being maintained and measurements are being taken in the same way each
•   Interviewers must be trained to know and recognize typical terminology for regional
    health care plans, heating/cooling energy sources, early intervention program names
    and other relevant information.
•   Provide data privacy training for each new interviewer in accordance with site-specific
    IRB and HIPPA guidelines. NIH human subjects training can be completed at HIPPA training may also be available
    through your Human Resources or Volunteer Services department. Ensure that
    interviewers renew their certification at the required intervals.
•   At sites that require signed consent (all but Boston and Philadelphia), ensure that
    informed consent is signed prior to conducting interviews and that originals of these
    consents are kept in a locked location.
•   Obtain IRB approval from your respective institution‟s IRB for the Children‟s
    HealthWatch interview protocol and all changes made to the interview procedures.
•   Obtain IRB renewal annually.
    If you need data to complete your IRB forms, please email requests to Zhaoyan Yang
    (, copying the Research and Policy Director, at least two weeks before the
    due date.
•   Interview primary caregivers of children under 36 months from surveillance population in
    the Emergency Department or clinic, being sure to avoid any introduction of bias to the
    sampling method (see Interview Inclusion Criteria and Interview Format and Structure).
    Goal: 20 interviews each week (240 per quarter => 960 annually)
•   Interviews must only be conducted in person in each site‟s respective medical setting on
    the day the caregiver seeks care for his/her child.
•   Provide up-to-date resource and referral information to all parents needing assistance.
    (See outreach clarification points and examples in Sections L and K and Appendix F of
    this manual.)
•   Code and clean interviews, ensuring that all information is complete, legible, and
    plausible, given the family‟s reported circumstances.
•   Photocopy or scan all interviews to ensure that a copy of each interview is on-site.
•   Mail copies of the interviews (with child‟s name blacked or whited out) at least once
    each month to Boston University Data Coordinating Center (DCC):

            Zhaoyan Yang, MS
            Boston University Data Coordinating Center
            Crosstown Center, 3rd Floor,
            801 Massachusetts Ave,
            Boston, MA 02118

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    Email Zhao to let her know that a package has been sent:
•   Review DCC outputs and queries and clean data as necessary.
•   DCC will perform statistical analysis of interview data, as well as anthropometric data
    from surveillance population.
• Sites may ask DCC for a copy of site-specific data. Requests for the site-specific
    dataset must be emailed to Zhao, cc‟ing the Research and Policy Director with at least
    two weeks notice. Datasets will be posted to the DCC‟s secure website for download1: Each site sees only its own data on the website.
Site Download ID/Password
       Username                Password                 Location
       minneapolis             XYa231                   Csnap\minneapolis_24T6754
       baltimore               BIHk4                    Csnap\baltimore_JYtyp12
       philadelphia            PLj765                   Csnap\philadelphia_JYT4wdr7
       littlerock              KJM6t                    Csnap\littlerock_HJG6ytr
          *Passwords are case-sensitive
•     Site coordinators may also request site-specific data runs, which will be performed as
      time allows.
      Data availability:
      Data from Jan-June of each year – available early October
      Data from July-December of each year – available early March
•     Principal Investigators, the Center team, and the Children‟s HealthWatch Research
      Group (including site coordinators) will review analyses and discuss dissemination of
      findings. A weekly science meeting takes place every Tuesday at 1pm EST. Site
      coordinators are encouraged to participate.
•     If site coordinators discover confusion surrounding interview protocols, interviewer
      difficulty with the flow or wording of a question or other problems of this nature, these
      issues must be brought to the attention of the Research and Policy Director.

    The secure website must also be used when the sites need to send data to the DCC.

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Child must be under 36 months to the exact date of visit (i.e., child can be interviewed on
   his/her third birthday but not after that)

• Child must be the individual for whom care is being sought in the Pediatric Emergency
   Department or clinic.
• Child does not need to be present or awake for interview. (i.e. an interviewer may
   continue interviewing if a child has been taken out of the room for procedures, etc).
• The interview should NOT interrupt the child‟s medical treatment. For this reason,
   caregivers of children who are critically ill or injured should not be interviewed. Nursing
   staff attending the child and parent should be consulted to assess whether an interview
   is appropriate.
• Whenever possible avoid interviewing children being seen for sexual abuse
   examinations or domestic violence issues.

• Interview the primary caregiver ONLY if they are also knowledgeable about detailed health,
  nutrition and financial questions regarding the child. The respondent must live in the same
  household as the child.
• If a caregiver has been interviewed within the past six months for the subject child or
  another child, s/he should not be interviewed again. (However, it may not always be
  possible to know whether or not that person has been interviewed within six months if s/he
  does not volunteer the information and s/he is seeking care for a different child.) Each site
  must develop a tracking system so that interviewers can determine whether a caregiver was
  previously interviewed (e.g. Excel spreadsheet used in Baltimore and Little Rock; Access
  query run weekly in Boston).
• Ensure that interviewers implement the sibling protocol (see details in Section A)
• The respondent and interviewer must use the same language during the interview. Hospital
  translators may not be used in administering the interview. The interview may only be
  administered using IRB approved interviews. As of 2009, the interview may be conducted in
  English or Spanish at all sites, and in Somali in Minneapolis.
• The primary caregiver and child must reside in the state in which the interview is conducted.

• If a child cannot be measured due to medical reasons, the caregiver may still be
• Only one caregiver per child is to be interviewed. If both parents of the child are
  present, direct the questions to the parent who is most familiar with the child‟s health,
  circumstances, and well-being. Do not ask questions of both caregivers, as this may
  cloud the data (employment, etc).
 If the father or other primary caregiver is being interviewed while the mother is present,
  do not ask the mother maternal depression screening questions. Maintain consistency
  with the respondent of the questions.

• Caregiver consent to interview is mandatory for the interview to proceed. Each site
  should follow IRB requirements specific to their respective institution. In addition to

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    requirements such as the specific wording of consent, some IRBs require written
    consent while others allow verbal consent.

Consent type by site (as of 2009):
   Baltimore: Written
   Boston: Verbal
   Little Rock: Written
   Minneapolis: Written
   Philadelphia: Verbal

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•   The questions and format of the English and Spanish versions are intended to be as
    similar to each other as possible. Please contact the Research and Policy Director at the
    Data Coordinating Center (DCC) if you identify a question(s) where this is not the case.
•   The opening script should be used as a guide for interviewers. IRB requirements may
    differ at each site with regard to the language of the introduction. Interviewers should be
    aware of the IRB requirements at their institution.
•   The questions must be read exactly as they appear and in the order they appear.
•   Transition statements are to be used to move between sections of the interview so that the
    participant is prepared for a change in question-type. For example, the employment section
    is prefaced by “The next set of questions are about [your/the child‟s caregiver‟s] employment
•   The numbering begins with „1‟ at the start of each new section. The numbering will
    remain in this format for the life of the interview to allow for evolution of the interview as
    we learn more or need more information. This format eliminates difficult, complicated
    numbering adjustments.
•   The interview maintains the detail bracket format to identify to whom the question is
    intended (example: “What do you consider [your/the child’s caregiver] race and ethnicity
    to be?”)
•   Questions that ask for information from the past year use the format “Since last [name of
    current month]” in order to better define what the twelve month period of interest, since
    we could potentially be interviewing the primary caregiver twice per year.
•   Site coordinators should refer to the “Preferred Others” document in Appendix A to see
    what common „other‟ categories are. When cleaning interviews try to fit „other‟
    responses into the regular answer options or these categories as much as possible.
•   Normally the responses to the PEDS questions are categorized on a separate scoring
    form for coding. However, to keep things simpler for interviewers and for data entry
    within Children‟s HealthWatch, we are not using the scoring form but are just using the
    response sheet on the interview to categorize concerns.

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A good research interview documents the subject‟s responses unaffected by the
interviewer. It is important for the interviewer not to interject him or herself into the
interview. All participants should hear the same question asked in the same way and in
the same order.

    1. Consciously make an effort not to comment on any answer. THIS IS VERY
       IMPORTANT!!!! It may lead the participant to answer in a way they would not have and
       adds time to the interview. This is probably the most important habit an interviewer can

    2. A skilled interviewer will remain friendly and approachable but not let a participant
       “wander off.”Develop techniques for redirecting participants when they get off track.
       Since most of the questions are yes/no, multiple choice, or answered with a number,
       gently remind the participant that we can only accept a “yes” or “no” response or use
       prompts such as “in general?”.

    3. Do not attempt to correct a participant if it seems an answer is incorrect, but do offer to
       clarify if a response does not seem logical in relation to other responses given.

    4. Speak clearly and directly, setting the tone and speed of the interview from the
       beginning. Move along at a steady pace. It is important to keep the attention of the
       participant. People tend to get distracted and bored if the pace is too slow.

    5. Be direct and matter of fact. Remember that each participant should be receiving the
       same interview. Do not offer clarifications unless the participant asks for them and then
       keep it brief. Use the standard prompts provided in the interview.

    6. Due to the sensitive nature of some of the questions, it is important to complete the
       interview in a quiet, private room in order to respect the participant‟s privacy and to
       preserve confidentiality.

    7. If the participant seems especially uncomfortable with some questions (e.g. weight,
       depression or food insecurity questions), it is alright to let the participant write down an
       answer or point to one. Do not overuse this option – these questions are intended to be
       part of an interviewer-led survey and some participants may not be literate. We do not
       want to cause them undue embarrassment or discomfort.

    8. If the participant is concerned about confidentiality, explain that all data is identified and
       processed by an ID number and that names will never be associated with the data.

    9. Remember that the participant has the right to refuse to answer any question.

    10. If the participant asks why we are doing this interview or why we are asking a particular
        question, be prepared to give a brief explanation. For example if a mother asks why we

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        need to know if she was in subsidized housing while pregnant or whether she has been
        on welfare before, the interviewer can explain that we examine relationships between
        assistance programs and children‟s health and development, in order to try to improve
        the programs for people who use them..

    11. Be cognizant of body language during an interview. Make eye contact when possible
        and try to keep movements smooth and calm.

    12. Interviewers must not judge the situation before them. We are interviewing to collect
        data, not to pass any kind of judgment on patients or their families.

    13. If questions seem irrelevant to the participant, the interviewer may explain the question
        but also let him/her know that all questions must be asked in the pattern provided.

    14. Interviewers must ensure that they do not introduce interview bias in sampling (for
        example, do not preferentially select only certain types of children (only Latinos, only
        newborns, or only children with HIV) if the option is available).

    15. Interviewers must become comfortable with the interview‟s numbering system and
        section order so as not to accidentally „skip‟ over to another section‟s numbering.

    16. Interviewers need to be able to quickly assess to whom the question is directed.2 Any
        time the words “biological mother” are used, the question should ONLY refer to the
        biological mother. If this information is unknown, it should be recorded as such. Do
        NOT use responses for a non-biological female parent.

    17. If the interviewer knows the child‟s name and feels comfortable using his/her first name,
        use it wherever there are questions regarding “the child.” Using the child‟s name helps
        the caregiver remain invested in the interview. If the interviewer cannot pronounce the
        child‟s name correctly, continue to use “your child” or “the child” as appropriate.

    18. Interviewers conducting an interview in Spanish or Somali should fill in any „other‟
        categories in English, not Spanish, because data entry is done only in English.

    19. Interviewers must be trained to use the measuring boards and use them in the same
        way for every child they measure.

 We have agreed to change the eligibility rules to only allow primary caregivers since more than 99% of our sample
are primary caregivers. The change has been worked into the electronic version‟s language/programming already
but not yet in the paper version. The language in this MOP reflects the change.

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                           INTERVIEW GUIDE INTRODUCTION
The following Interview Guide is meant to serve as guide for training purposes to ensure
consistency in administration of the Children’s HealthWatch interview across sites..

Please contact the Research and Policy Director with any questions about administration of
the interview. The Research and Policy Director will disseminate all relevant responses to
the rest of the site coordinators via email (See Protocol Memos below). These memos will
be numbered and should each be printed out and filed in the appropriate section so future
site coordinators have a reference book. In addition, each site should develop its own
manual of operations that includes specific instructions about where new interviews are
kept, how interviews are turned in, how the hospital’s medical record system works etc. The
PI of each site should have a copy of the site manual of operations as well as a copy of this
general manual of operations.

                               PROTOCOL MEMO CODING

From time to time, it is necessary to update and/or change our protocols to address
situations that were not anticipated in the writing of this manual. The Research and Policy
Director will distribute protocol memos that should be filed in the section indicated (each
section is followed by a „MEMO‟ divider). Approximately once a year, we will incorporate
the memos into the body of the manual. All memos supercede the guidance provided in
this manual.

The memos will be coded as follows:

Section [X]; [Year-Month/Day]; [Topic]

For example the following hypothetical memo would be filed in the memo section after
Section C:

Section C; 2010-1/15; Guidance concerning „other‟ category of race/ethnicity question

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Interview ID Number: Each site must have a system in place for numbering interviews. For
    example, the system could begin with 00001, 00002, etc, or it could begin with 60001,
    60002, etc. The ID numbers are needed for tracking missing interviews and other
    identification purposes. Each interview must be assigned a unique ID number, even if
    the same child was interviewed more than six months ago. ID numbers do not need to
    go in chronological order. Sites may not use the medical record number as an ID
    number (unless it is changed or added to in some way).
Medical Record Number: The hospital‟s Medical Record Number or an Encrypted Medical
    Record Number should be recorded. The number will be used to link the interview data
    with medical record surveillance data. Each child must have their own Medical Record
    Number. For children who are interviewed more than once, the same number will be
    used both times. This helps us to identify children who have been interviewed in the last
    six months.
Weight and Height: Measurements must be taken on the day of the interview, either by the
    nursing staff or by the Children‟s HealthWatch interviewer. If unknown, record 99.99 for
    weight and 999.99 for height. (Normal range is 2-25 kg and 25-130 cm.)
Date of Interview: The date that the interview took place.
Interviewer‟s Initials: Helpful for quality assurance purposes. Two letters only. (Please see
    Shift Log in Appendix B)
Dehydration and Admission: These should be determined from the hospital medical
    record system. Admission means admitted to the hospital or for observation on the day
    of the interview after the visit to the ED or clinic. (Admissions that occur on the next day
    are acceptable for our purposes if the visit occurred in the evening.) In other words, the
    admission must be an extension of the original visit.
Diagnosis Codes (Baltimore, Boston, Little Rock): Use the Diagnosis Categories sheet
    (please see Appendix C) to record the primary medical diagnosis for the visit, ONLY for
    those children who were admitted to the hospital on the day of the interview or were put
    under observation. Exceptions to this rule include children with: congenital
    abnormalities, HIV/AIDS, or Short-gut syndrome. For example, if the primary diagnosis
    is „fever‟ but the secondary diagnosis is „sickle cell disease,‟ then code for the secondary
    because it is a congenital abnormality that requires recurrent use of the ED. If you are
    unsure of the severity of a secondary diagnosis, defer to your site‟s PI. If you are still
    unsure, then email the Research and Policy Director.
Site name: Check One.
Type of visit: Check One

Definition of an „incomplete‟ interview
Sometimes interviewers are unable to complete an interview. For example, a caregiver agrees
to do the interview and started to answer questions but did not complete the interview because
the doctor arrived and the interviewer was not able to return or the caregiver no longer wanted
to participate. In such cases, please draw a line at whatever point the interview was stopped,
and write INCOMPLETE on the top of Page 1. Send the completed pages of the interview.

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                            INTERVIEW GUIDE: PROTOCOL MEMOS

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1. 'Child's gender'
„Name of child‟: This is optional. It may be helpful for making the interview seem more
    personal to the participant but MUST be blacked &/or whited out before sending the
    interviews to the DCC. Attaching the consent form to the survey and identifying the child
    only from that form is an option. Consent forms are removed and securely filed prior to
    sending the survey to the DCC.
2. „Child‟s date of birth‟
3. „Relationship to child‟: Use the 'other' category to specify relationship to the child if not
mother or father. Some common „others‟ include foster mother/father, adoptive
mother/father, grandmother, and aunt.
4. „Primary caregiver‟: This refers to the person who has legal custody of the child or who
assumes the task of feeding, bathing, raising the child most of the time.
5. „Same household‟: The respondent to the interview MUST live in the same household
as the child. If during the course of the interview it is apparent that the person who is being
interviewed is not knowledgeable about the child , end the interview and re-code the front of
the interview as “No knowledge of household.”
6. 'Reside in state': The caregiver and child must reside in the state in which the interview
    is being conducted. This will allow us to see how families are being affected by public
    policies on the state level.
7. Reason for ineligibility
             Not primary caregiver
             Does not live in same household as child
             Does not reside in state
             No knowledge of household
             Interviewed within last 6 months
             Language barrier
             Child is brought in due to volatile social/violent situation
             Child is in critical condition

Other important screening instructions:
Sibling Eligibility
Part 1: Two or more age-eligible siblings present on the same day, at the same time.
If two or more age-eligible siblings for whom care is being sought are present on the same
day, at the same time in the clinic/ED, interviewers should only interview the older sibling.

Rationale: the older sibling will be ineligible due to age („age-out‟) faster than the younger

Part 2: Sibling of previously interviewed child is brought for care with same caregiver in
A.      No caregiver should be interviewed more than once in a six month period even if
        they are seeking care for another age-eligible child within the household. In other
        words, if the parent (usually the mother) has been interviewed about any of her
        children in the last six months, we do not re-interview. Code this as ineligible –
        interviewed within last 6 months (Q7, answer option 2).

B.      If the age-eligible sibling of a previously interviewed child seeks care with the same

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        caregiver in the clinic/ED, more than six months after the „original‟ sibling was
        interviewed, we interview the second sibling. In other words, if the parent (usually the
        mother) has been interviewed about any of her children more than six months ago,
        we should re-interview.

C.      Note that both scenarios A and B depend on our knowledge that the family has been
        interviewed previously (by self-admission, realization that the child is a twin,
        recognition of the family etc.). In many cases, we are unaware and we accept this
        level of uncertainty.

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                            SECTION A: PROTOCOL MEMOS

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Questions 1-10 are ONLY for children ages 4 months – 3 years old. The questions are
  not applicable for infants under 4 months of age. Skip this page for infants under 4
  months old.
Questions 1-10 come from the validated Parents‟ Evaluation of Developmental Status
  (PEDS) scale. All sites must use the PEDS manual (See Appendix E) and the PEDS
  Master Coding List (Appendix D) in training interviewers.
PEDS Manual: Glascoe FP. Collaborating With Parents: Using the Parent Evaluation of
  Developmental Status to Detect and Address Developmental and Behavioral Problems.
  2002. Ellsworth and Vandermeer Press, Nashville. The full manual can be purchased at

• Interviewers should read the 10 questions exactly as written, marking a „yes‟ where a
   concern is indicated by the caregiver. Interviewers should write notes in the margins on
   the page to record any specific concerns that the caregiver lists.
• Interviewers must not second-guess caregivers. If the caregiver perceives
   something as a concern, even if it is minor, and responds „yes‟ to a question, it should
   be coded as yes.
• All caregivers should also be asked questions 11 and 12. Interviewers should be
   trained to make a mental note of the response to Question 12, in particular, and make
   sure to provide the family with Early Intervention resource information at the end of the
   interview, along with any other items requested in Section K.
• Write all responses to open ended questions in English. These responses need to be
   reviewed by the site coordinator for clarity and potential recategorization before they are
   sent to the DCC.
• Site coordinators (NOT interviewers) must review all PEDS response sheets to
   make sure that the concerns that parents raise are correctly categorized. This review
   may result in re-coding of responses. Typically this will happen if a response is given
   in Question 1 but can be categorized into one of the categories that correspond to
   Questions 2 – 10. If the response is re-coded, the initial ‘yes’ in Question 1 should
   be changed to ‘no’. The important thing to remember is that parents can mention a
   concern anywhere within the ten questions, but for scoring purposes it is what they say,
   not where they say it, that matters. Code each answer into one category only – do not
   double code.
For a list of typical responses that correspond to each Question, see the Master PEDS
   Coding List (Appendix D).
 PEDS responses will also need to be re-coded if the caregiver initially says that the child
   has a known developmental problem but then responds „no‟ to all 10 questions
   (presumably because they are not concerned since they already are aware of the
   problem and the child is receiving services). In this case, questions 1 and 10 should be
   coded as „yes‟, since a yes to those two questions will place children in this age group
   into the group with developmental concerns. Alternatively, if the parent reports which
   type of services the child receives (PT, OT, Speech, etc), the items for those categories
   could be marked „yes‟.
• There should not be any „yes‟ responses for concerns such as “advanced for their age”
   or “developing faster than other children their age.” If it was marked as „yes‟, it should be

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    changed to „no‟. These are not the type of concerns that these questions are designed
    to detect.
•   If site coordinators have questions about how to code a caregiver response and cannot
    find the answer in the PEDS Master Coding List or the PEDS Manual, please contact
    the Research and Policy Director.

Questions that may be predictors of developmental delay are:
       o Ages 4-17 months: Questions 1, 2, 7, and 10.
       o Ages 18 months-35 months: Questions 1, 2, 3, and 10.
       o Age 36 months: Questions 1, 2, 3, 5, and 10.
**The electronic interview will include a definition of EI. In the meantime, for interviewers who
need to explain EI programs:
    “Early Intervention provides family-centered services that facilitate the developmental
    progress of eligible children. Early Intervention helps children acquire the skills they will
    need to enter kindergarten ready to learn and get along with others.
    Generally a child up to three years of age and his/her family may be eligible for EI
    services if the child:
     Is not reaching age-appropriate milestones in one or more areas of development.
     Is diagnosed with a physical, emotional, or cognitive condition that may result in a
       developmental delay.
     Is at risk for developmental delay due to various biological and/or environmental
Each site should be prepared to facilitate referrals to local Early Intervention services. Each
state has a primary department that handles Early Intervention referrals. The information for
each CHW site is listed below.
     Baltimore, MD: Department of Education: (410)-767-0261 or 800-535-0128
     Boston, MA: Department of Public Health :1-800-905-8437
     Little Rock, AR: Department of Health and Human Services 1-800-643-8258
     Minneapolis, MN: Department of Education (651) 582-8883
     Philadelphia, PA: Department of Public Welfare 800-692-7288 or (717) 783-7213
Site coordinators are responsible for ensuring that interviewers have resource materials
    available for parents at the time of the interview that give them more information about
    developmental concerns.

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                            SECTION B: PROTOCOL MEMOS

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In this section of the interview questions 1, 4 and 5 are about the child's biological mother.
    If interviewing a foster or adoptive parent we are still interested in information regarding
    the child's biological mother.
1. 'Year of biological mother's birth': This allows us to potentially control for age of the
    mother in any analysis.
2. „Child‟s zip code‟: This will help identify where child's family is residing.
3. 'Child's country of birth': This question is an indirect method for determining
    immigration status.
4. „Country of birth of child‟s biological mother‟: This question will allow us to identify
    the immigrant population.
5. „Date of arrival to U.S. of child‟s biological mother': This question will allow us to
    determine immigrant families‟ length of stay in the U.S.
6. „Race/ethnicity of primary caregiver‟: This question has been modified from the U.S.
    Census to match our populations. You may select more than one group. Use the „other‟
    category for persons identifying themselves ethnically or nationally (example: “I am
    Haitian”, “Cape Verdean”, “Somali”, “Korean”, etc.).
    **The electronic interview has a much revised and expanded version of this question –
    separating Hispanic/Latino from the race/ethnicity question and following the pattern of
    the U.S. Census. In the meantime, please make sure that you record ethnic/national
    answers in „other,‟ as noted.
7. „Marital status: Be sure to give the participant all of the answer options, as many
    people may be “single” but also cohabitating.
8. „Highest level of education‟: Allows us to potentially control for level of education in
    any analysis. Be sure to list all of the options so that people who are in college do not
    report high school as their highest level but instead can be coded as „some college,‟
    which more accurately reflects their situation.. Caregivers who report no schooling
    should be coded as “some high school or less.”

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                            SECTION C: PROTOCOL MEMOS

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Keep in mind that he employment questions are intended to elicit information about
    the employment status of the primary caregiver only.
1. 'Caregiver employment and number of jobs': We want to know if the primary
    caregiver has one or more paying jobs, even if some are only temporary. If no job, SKIP
    to Q.8.
2. „Number of hours per week‟: Ask ONLY if the primary caregiver has paid employment.
    If the caregiver is working more than one job then indicate total number of hours they
    work per week. If they work sporadically code=77. If the caregiver is on maternity leave
    but will return to their job then code=88.

3. ' Number of paying jobs': We want to know how many paid jobs the caregiver has had
     in the last 12 months.
3a. „Hourly rate of pay‟: This question refers to the job held the longest. The amount given
     should be a pre-tax rate and should be recorded in the appropriate period – i.e. hourly,
     weekly, monthly or yearly. You need only fill out one option - the one most
     convenient/understandable to the caregiver.
4. 'Length of employment': This question is targeted towards the job that the caregiver
     has held the longest.
5. (BLANK)
6. 'Hours changed': If the caregiver is employed at more than one job then direct this
     question towards the job where more hours are worked. If the caregiver's hours have
     both increased and decreased (or some other combination of changes) within the last
     12 months choose the most recent change. If the caregiver has stopped working
     entirely, choose this selection over decreased hours.
7. (BLANK)
8. 'Caregiver employment within past 12 months‟: If no, don‟t know or refused, then
     SKIP to Q12.
9. 'Job end date': If the caregiver had more than one job then direct the question towards
     the job where s/he worked the most hours.
10.'Length of employment': If the caregiver had more than one job then ask about the job
     where more hours were worked.
11.'Reason for end of employment' Mark up to three.3

12. 'Unemployment benefits'
13. „Other adults employed in the household‟ We want a total count, including the child‟s
14. „Moneywise‟

    In the electronic interview, participants will be able to select as many as apply.

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                            SECTION D: PROTOCOL MEMOS

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1. „Birth weight of child‟ Range is 500-7000g or 1 lb. 2 oz. – 15 lb. 7 oz.
2. „How many weeks of pregnancy‟: We want to know the gestational age of the child.
    “How close to the due date was this child born” is the prompt that will get the clearest
    information. Interviewers should know that the due date is calculated as 40 weeks of
    pregnancy. If the primary caregiver says “She was born 4 days before her due date",
    round down in this case to get 39 weeks. Interviewers must be comfortable with
    rounding up and down. Round up if child was born more than half-way through the
    week. If unknown, put “99.”
3. „Child breastfed‟: We are interested in knowing if the child has ever received breast
    milk. If the child received breastmilk for less than 1 week, still code as YES. We pick up
    the length of time in the following question.
4. „Months breast fed‟: Record the number of months the mother breastfed. If still
    breastfeeding, code as 77, if less than 1 month, code as 88.
4a. „Age of child - other foods‟
5. „Child‟s general health‟
6. „Overnight stay in hospital‟: We want to know how many times the child was admitted
    to the hospital. This does not include day surgeries that are not classified as
    „admissions‟. If the child was born prematurely and had to stay in the hospital because
    of complications from premature birth, this does not count as an admission (i.e. code 0).
7. „Site of well-baby-care‟: We want to know where the child is cared for on a regular
    basis - a hospital clinic or neighborhood/community health center, a private pediatrician,
    or emergency room?
8. blank
9. „Change in place of health care?‟
    a. ‟Was this change related to health insurance?‟
10. „Health insurance‟: If it is not immediately obvious into which category the insurance
    should be placed, interviewers should write the insurance name in the „other‟ category.
    After the interview the interviewer should try to code the response according to the
    categories. Each site must have a detailed list of the insurers that serve their patient
    populations and under which category they should go. If a parent indicates that they
    have both private and public insurance, mark private insurance. Private insurance is
    always billed first.
10a. „Change in insurance coverage‟: We want to know if the child has lost insurance
    over the past year. If insurance coverage has changed multiple times, ask for the most
    significant change. A change from public insurance (such as Medicaid or SCHIP) to
    Free Care is considered „loss of coverage‟ because Free Care is not stable or
    comprehensive health insurance coverage. (Other public insurance/free care: In many
    states, there are limited plans, (often called free care) that operate with state subsidies
    but are not part of the Medicaid/SCHIP system. These plans are for people who do not
    qualify for traditional public insurance, like families who earn too much to be eligible but
    cannot afford insurance, undocumented immigrants or legal immigrants subject to the
    five year bar.)
11. „Unable to get insurance?‟
12. „Reason child didn‟t have insurance‟: Use the premium definition prompt if the caregiver
seems not to understand the question.
13. „Change in insurance premium or co-payment‟: We want to know if there has been

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     an increase in the cost of the child‟s insurance. 4.
14. „Change in prescription co-payment‟: We want to know if there has been a change in
     the co-payment for prescription medications. A preferred „other‟ response here is “now
     has to pay full-price for medications.”
15. „Child Needed prescription but unable to get it‟
16. (BLANK)
17. „Child Needed medical care but could not afford it‟
18. „Another household member needed prescription but could not afford it‟
18a.‟Ages of those unable to get prescriptions‟
19. „Another household member needed medical care but could not afford it‟
19a. „Ages of those unable to get medical care‟
20. „Cost of medical care or prescriptions stopped you from being able to pay…‟ others
(will be in electronic interview) include: child care, other medical bills, phone bill(s). Mark as
many as apply.

    The electronic version will have a skip pattern, but there is no current skip pattern.

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                            SECTION E: PROTOCOL MEMOS

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Direct these questions only to the child's mother or the female primary caregiver. Male
respondents should NOT be asked questions 1-5 (skip to Q6b). Depression here refers to
the common use of the word and not strictly clinical depression. However, the last two
questions (Qs 4 and 5) of this section could be indicators of clinical depression. Interviewers
should be especially sensitive with these questions, as caregivers may not be entirely
comfortable answering them.
1. 'Maternal health'
2. 'Maternal Health now compared to a year ago‟
3a. 'Have you felt depressed?‟
3b. 'Days of depression in the last week'
4. '2 WEEKS or more of depression'
5. '2 YEARS or more of depression'

6. „Smoked cigarettes in the last year?‟
6a. # smoked per day
6b. # of smokers in household. If the answer to Q6 is “No”, do not say „Including yourself.‟
    If the family is living in a shelter, count only those people in the immediate family unit.

Parental height and weight can be used to calculate Body Mass Index, which can be used
as a predictor of childhood overweight. Another purpose of this question is for easier
interpretation of child data. For example, are the parents of this child short, and therefore a
child below the 5th percentile should not be considered to be at low height for age?
Reasonable estimates are OK for this variable. The difference between 5 ft 2 inches and 5ft
3 inches is not important. Weight need not be exceedingly precise. The difference between
200 lbs and 210 lbs for a 5 ft 4 inch woman still places her as overweight/obese and gives
us that variable as a potential risk factor. Interviewers need to be aware that people may
give obviously incorrect height and weight measures because they do not know their actual

Fill in the weight/height in the units the parents use – e.g. if they know their weight in Kg,
record it in the space for kilograms.
7. a. 'Mother's height': We want to know the biological parents‟ height without shoes in
     feet and inches.
      b. 'Father's height'
8. a. 'Mother's weight': We want to know the biological parents‟ weight without clothes or
     shoes in pounds. If the mother is pregnant, please record her average weight when not
      b. 'Father's weight' “What is the father‟s weight?”

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                            SECTION F: PROTOCOL MEMOS

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1. „Child lives in...‟: We want to know the type of housing the child's family lives in.
2. 'Home ownership': This question allows us to identify individuals who say they live in a
    apartment or house but are renters. Teen moms who live in their parents‟ home should
    not be considered as owning a home. The house‟s deed must be under the primary
    caregiver's name or under his or her stable partner.
3. „Temporary situation‟: When coping with economic difficulties people often adapt by
    moving in with friends or other family to limit expenditures like rent. Be aware that some
    people might consider their living situation temporary because they are looking for a
    new place to live. This is not what we are looking for. We are looking for families who
    live temporarily with others because of economic difficulties.
4. „Full rent payments/portion of the rent‟ Mark the answer as the participant sees it – in
    other words, if s/he perceives that his/her payment is a full rent payment, choose the
    corresponding answer.
5. „How much rent‟: The amount stated should correspond to the rent situation from the
    previous question. For example, if the caregiver said they pay a portion of the rent in the
    previous question we would like to know how much is their portion. (This question has
    been removed in the electronic interview, so do not belabor this point unduly.)
6. 'On-time rent/mortgage payments'
7. „Number of bedrooms‟: Record how many rooms are used as bedrooms.
8. 'Number of places child has lived': This question will help us identify households with
    unstable housing. Must be > 1.
9. Including this child, how many people ages 0-17 live in the home? If the child lives
    in a shelter do not include anyone outside of the nuclear family. Note: Response must
    be ≥ 1.
10. 'People 18 or over‟: Provide a count of how many people 18 or over (including
    interviewee if applicable) live in the household. If the child lives in a shelter do not
    include anyone outside of the nuclear family.
11 (BLANK)
12. 'Subsidized or public housing project': We want to know if the household is receiving
    government assistance to pay rent.
12a. 'Housing under your name': We are interested in knowing whether the caregiver is
    receiving this assistance or if it is in the name someone else in the household.
12b. 'Can you move with your subsidy': We want to know if the caregiver has a Section 8
    Voucher. This means that the caregiver can move to other housing and still retain the
    benefit. Housing projects do not have this kind of flexibility.
13. 'Applied for public housing': If a family is not living in public housing or if they don't
    have this benefit under their name we want to know if they have applied.
14. ' Are you on a waiting list for public housing or Section 8'
14a. 'Time on waiting list': Record this in months.
15. 'Tried to get on a waiting list but couldn't': Sometimes there is so much demand for
    public housing assistance that the waiting lists are closed.
16. 'Do you have a housing voucher': Even if families are not living in subsidized housing,
    sometimes they have a voucher but cannot find housing that will accept it.
17.'Housing voucher expired/revoked'

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18. During pregnancy were you homeless or living in a shelter? We are interested in
    whether the mother was homeless/in shelter with this child in utero.
19. „Since child was born, has s/he been homeless or lived in a shelter?‟
19a. „For how many months?‟
20. „During pregnancy did you live in subsidized, public or Section 8 housing?‟ We
    are interested in whether the mother lived in subsidized housing (of any kind) with this
    child in utero.
21. „Since child was born, has s/he lived in subsidized, public or Section 8 housing?‟
21a. „For how many months?‟

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                            SECTION G: PROTOCOL MEMOS

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For questions 5-8 we are interested in knowing whether families have had problems with
    their utilities primarily because they could not afford to pay their bills.
1. 'Primary source of energy/heating' Interviewers must know the typical terms for and
    sources of energy/heat in your area; terminology and source vary from region to region.
    Choose only one answer – the primary (or main) source.
2. 'Primary source of cooling'
3. 'Are any utilities covered' Interviewers may record more than one.
4.„Fuel assistance‟: Someone who is living or has lived in a shelter or public housing, etc
    for greater than 12 months will most likely not be receiving any fuel assistance. Those
    who have Section 8 or other kinds of housing vouchers, on the other hand, may very
    well receive assistance. Record whatever answer the caregiver gives – do not make
    assumptions about situations in which a participant may or may not receive this benefit.
5 'Letter sent threatening to shut off heating utility for not paying bills'
6. 'Heating utility shut off or not delivered for not paying bills'
7. 'Any days the home was not heated or cooled because you couldn't pay the bills':
8. (BLANK)
9. „Cooking stove for heat‟ because you couldn‟t pay the bills.‟ In some locations, this
question is sometimes perceived as a suggestion for a way of heating one‟s home. Care
must be taken to ensure that people understand that using a cooking stove for heat is very
dangerous. (If the caregiver says „oh what a good idea‟ or some similar comment, it is ok to
neutrally say, „we ask this question because this is a dangerous way to heat one‟s home.‟)

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                            SECTION H: PROTOCOL MEMOS

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The U.S. Food Security Scale evaluates household, adult, and child level food insecurity
    and/or hunger. There are three stages of questions. Not everyone passes through all
    stages of questions, so the interviewer needs to become very familiar with how this part
    of the questionnaire works. These questions may not be altered in any way because
    they are from a nationally validated survey. Follow the guidelines for each stage. In
    order for Children’s HealthWatch to have comparable data to the national samples we
    need to follow the precise format. Read the questions clearly and slowly; some
    questions sound similar. If the caregiver expresses frustration, the interviewer may
    gently apologize and explain that s/he has to read the questions exactly as they are
STAGE 1 of 3: Every person interviewed answers Questions 1-6. These questions ascertain
    food insecurity at the household level. For Questions 2-6 respondents must respond "
    often true”, “sometimes true”, or “never true”.
1. (BLANK)
2. „Worried about food running out‟
3. „Food didn‟t last‟
4. „Couldn‟t afford balanced meals‟: (PROMPT for a „balanced meal‟ = one which
    combines foods from a variety of food groups).
5. „Few kinds of low cost foods‟: This question focuses on whether the family is eating
    foods that are inexpensive, foods they wouldn‟t buy under better financial situations or
    strategies to save money due to financial pressures, not due to fads or preferences. If
    the caregiver does not know what understand the term „low cost foods,‟ the interviewer
    may say: Low cost foods are foods you buy to stretch your budget and ones that you
    might not buy if you had more money.
6. „Children receiving balanced meals‟:
STAGE 2 of 3: Persons who respond “sometimes true” or “often true” to Questions 2-6
    should be asked Questions 7-12a. OTHERWISE SKIP TO SECTION J OF THE
    INTERVIEW. Questions 7-12a are oriented to ascertaining adult food insecurity status
    among adults. For Question 7 the person must respond “often true”, “sometimes true”,
    or “never true”.
7. „Child not eating enough‟
8. „Adults cut size or skip meals‟
8a. „How often skip meals‟
9. „Adult ever eat less‟
10. „Adult ever hungry but did not eat‟
11. „Adult lose weight because of lack of food‟
12. „Adult not eat for a whole day‟
12a. „How often‟
STAGE 3 of 3: Persons who respond “Yes” or “some months”, “almost every month” or
    “often/sometimes true” to any of Questions 7-12a should be asked questions 13-16.
OTHERWISE SKIP TO SECTION J OF THE INTERVIEW. Questions 13-16 are oriented to
    ascertaining the food insecurity status of children in household. If there is only one
    small child in the household who is being exclusively breastfed, SKIP TO
13. „Child cut size of meals‟
14. „Child skip meals‟

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14a. ‟How often‟
15. „Child ever hungry‟
16. „Child ever not eat for whole day‟

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                            SECTION I: PROTOCOL MEMOS

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1. „Ever received or applied for welfare‟: If person is unaware or unfamiliar with welfare
     program, mark “Don‟t know about program”.
     Child-only cases: These are cases where the child but not the caregiver received TANF.
     Child-only cases exist because the child‟s parents are ineligible for assistance. This
     occurs because: a subsidized guardian who is not eligible for TANF benefits is caring for
     children who are eligible for TANF; the number of adults reaching their time limit under
     TANF increases; the number of families in which an adult is no longer eligible for
     benefits because of sanctions increases; and/or immigrant eligibility is restricted.
2. 'Length of time on welfare if presently on it': We want to know for what length of time
     this person has received welfare in their name as an adult. Indicate number of months
     or years. CODE: 97.0 = on welfare <1 year           99.9 =“DK/Refused”      77.7= child-only
     case Interviewers should code partial years as decimal points – e.g. 6mos would be
     00.5, not 00.6; 9 months would be 00.8, not 00.9. Mark only one answer for this
     question. If child-only and another answer are true, mark child-only.
3. 'How many other times have you been on welfare as an adult': We want to know if
     the caregiver has ever received welfare before the present experience or, if not on it
     presently, how many times before the experience mentioned in Question 1. Mark 'no
     previous times' if this is the caregiver's only welfare experience. Mark only one answer
     for this question. If child-only and another answer are true (and child-only is marked in
     Q1), record the caregiver‟s experience and follow the pattern for that answer.
4. 'What is the reason the caregiver is no longer receiving welfare': Provide the
     reason the caregiver stopped receiving welfare most recently. Some respondents
     mention multiple responses to this question. Fill in 'other', if the answer cannot
     reasonably fit into another category.
5. ' Reason caregiver was cut off of welfare': Ask this question if Option H was checked
     for Question 4. Read all of the statements. Mark all that apply.
6. „Enrolled in a job, job training, school or community service‟: As part of state
     requirements for receiving welfare, the primary caregiver may be enrolled in a school,
     job or community program. Primary caregivers with children less than two years of age
     are often “exempt” from these welfare-to-work requirements, so persons with children
     between two to three years of age may be the only affirmative respondents to this
7. 'Has the amount of benefit changed': If the benefit has both increased and decreased
in the past year report the change that is most recent.
8. 'Why did the benefit decrease': Read all of the statements. Mark all that apply.
9. „Money received in one month‟: Ask for the best estimate of monthly welfare benefit. If
     the caregiver combines SNAP (food stamp) and welfare amounts, be sure to separate
     the two values. It is alright to gently prompt the caregiver by asking if the amount is for
     welfare only.
10. „Caregiver covered on welfare benefit‟5
11. 'Child covered on welfare benefit'
12. „Why not covered‟: A child receiving SSI-disability or in foster care will not be
     listed/covered typically by welfare since they are receiving cash assistance from another
     program. In Massachusetts, if another pregnancy occurred while receiving welfare the
    Skip patterns for Qs 10-11 have been fixed in electronic version to deal with child-only cases.

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    child would be considered a “family cap,” Meaning that the family has reached its limit
    on the number of household members who can be counted for the benefit calculation.
    Fill in „other‟ if the response cannot reasonably fit into another category.
13. 'Are any other children not covered by the benefit because of family cap': This
    question may apply only to certain sites, depending on state laws. If the child you are
    surveying is the only child (single child household) then skip this question. This question
    should only be asked about the caregiver‟s other children. Children who are unrelated to
    the caregiver but living with the caregiver are not to be considered as family cap kids.
14. „Applied for or received SSI-disability‟: We are interested in knowing if the caregiver,
    this child, or any siblings are receiving this benefit.
 15. „Received or applied for SNAP‟
16. „Reasons why not receiving SNAP‟: If the person is unaware of the program mark
    'don't know if eligible'.
17. „Why denied or cut-off SNAP‟: Ask only if Option 4 (Cut off SNAP/Stopped receiving
    SNAP benefit) to Question 16 is marked. Mark only one answer.
18. „Dollar value of SNAP‟: Ask for best estimate of monthly benefit for SNAP only
19. „Change of SNAP‟: If the benefit has both increased and decreased in the past year
    report the change that is most recent.
20. „Why did amount change‟: Mark only one answer. Fill in “other” if response cannot
    reasonably fit into another category.
21. 'Use of Food Pantry' or in Minnesota “Food Shelf”; in Pennsylvania “Food
22. „Receives WIC‟
23. „Reasons why not receiving WIC‟: Mark the primary reason. Fill in “other” if no
    existing response is appropriate.
23a. „Received WIC continuously‟
23b. „Received WIC during pregnancy‟
24. (BLANK)
25. „Child care‟: We want to know if the child is in any kind of daycare, formal or informal,
on a regular basis and while the primary caregiver is at school or work (this does NOT
include irregular babysitting while caregiver goes out for a short while). If more than one
arrangement is used, ask for the one used more often. This arrangement must occur at
least once each week during the past month. (If a relative cares for the child for free, site
coordinators should recode this as the caregiver paying $0 (Q28) and the caregiver
receives help from the relative (Q29 – yes, Q30 relative).)
26. Hours spent in child care
27. Who provides meals
28. Cost to the family: We want to know the cost per week for this child only.
29. Help paying for child care?
30. Who helps pay for child care
31. On a waitlist?
32. Caregiver unable to work because of child care problems

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                            SECTION J: PROTOCOL MEMOS

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Read the text included in the interview. “We‟re almost finished. Thank you very much for
your time and participation. This next section is about resources and assistance that we
can offer to you. I will read a list of resources families are often interested in receiving
information about. As I read the list, feel free to say yes to any item you are interested in
getting more information about.”

In addition to the mandatory list of resources in the community, each site must have on
hand resource materials available for all of the topics listed in Section K to provide to
families in need. This may include informational handouts, contact information, and/or other
outreach materials. Interviewers should read through the following list and ask which
information the caregiver needs. Mark „yes‟ for the specific topics requested, and „no‟ if the
participant is not interested. Remember to offer early intervention information if it was
requested at the beginning of the interview.6

(A) List of resources in the community
(B) Childcare for families without
(D) Utility Assistance
(E) Domestic Violence
(F) Food stamps
(G) Medical Insurance
(H) Subsidized Housing
(I) Women's shelters/homeless shelters
(J) Food banks/food pantries/soup
(K) Employment training
(L) Depression or mental health
(M) Interpreter services
(N) social worker/social services
(O) Legal services/ advocacy for
housing, child support, immigration
(P) Nutrition
(Q) Hospital services
(R) Child Development
(S) Talk to outreach worker?
(T) Other
(U) Welfare/Cash Assistance
(V) Smoking Cessation
(W) Early Intervention Program

 Options U-W will be added to the electronic interview. These are requests that frequently appear in the ‘Other’
category. Please ensure that your site has local materials to address these requests.

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List of Resources in the Community
The mandatory list of resources in the community should include (when possible) the phone
number, address, and website of the mentioned service. The contacts for all of these
sources should be checked for accuracy a MINIMUM of once every year.
Sites will differ on appropriate resources in their area, but the minimum contact information
to include would be for those programs covered in the interview. They are:
        Emergency food resources (food pantries/soup kitchens/low-cost food)
        LIHEAP/Utility Assistance
        Subsidized Housing
        Homeless shelters
        Medical Insurance
        Mental Health Services
        Child care Subsidies
        Early Intervention Programs

Sites that interview in Spanish or Somali should have the above basic information available
in the appropriate language. See Appendix F for an example of the resource list.

Ideally, if there are other helpful programs the family might be eligible for in your hospital
(legal aid, application assistance etc.), you should include these on the Resource List as

NOTE: If during the course of the interview, it seems apparent that the child or mother is in
immediate danger, an interviewer should voice concern to a medical staff member. If
necessary, medical personnel can alert a social worker or initiate the proper reporting

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                            SECTION K: PROTOCOL MEMOS

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All interviewers must be trained on how to provide follow-up information or referral
information to families that appear to be in need or who express a need. If more involved
follow-up is needed that cannot be handled by the interviewer it is recommended that the
interviewer record the primary caregiver‟s address and phone number on the final page of
the interview to allow for follow-up by a designated professional at the site.

At sites that accept outreach requests (section L) there must be a data recording system to
record the specific requests of different participants and how those needs were addressed.
(Please see Appendix G for an example.) Mailings, home visits and phone calls are all
appropriate forms of communication. Families needing long-term assistance should be
referred to proper agencies rather than establishing a long-term relationship with a
Children‟s HealthWatch outreach worker.

Each site‟s outreach program will operate at one of the following levels:

Level I: The minimum requirement for Children‟s HealthWatch outreach. A list of resources
and at least one hard copy resource corresponding to the items in section K is available to
the caregiver at the time of the interview‟s conclusion (In addition to the site-specific
incentive). See Appendix F for an example of a resource list.

Level II: Site provides requirements of Level I and participants can choose to be contacted
by a designated outreach worker or have more specific information mailed to them after the

Level III: Site provides requirements of Levels I and II. Site also offers the option of
accompanying participants to social service appointments and providing home visits.

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Children‟s HealthWatch Research Sites‟ Outreach Programs
As of August 2009, active Children‟s HealthWatch sites provided the following levels of

Baltimore: Level II. At the Baltimore site when families request outreach, their contact
information and a brief description of their needs is forwarded to the social worker. She is a
LCSW who contacts families and assists them to the best of her ability with any issues they
are facing. She works 5-10 hours a week for Children‟s HealthWatch but does not
accompany them to appointments -- rather she is focused on linking families to existing

Boston: Level III. The Boston site has a part-time (16hrs/week) bilingual (Spanish/English)
outreach worker who works specifically with those participants who ask for someone to
contact them. Although none of the participants have requested or required home visits, the
outreach worker does offer the option. The site has an electronic outreach library with a
folder for every topic listed in Section K in both Spanish and English The list of resources is
updated a minimum of once a year. There is also a hard-copy binder kept in the office that
has copies of section K information so photocopies can be made. There are two outreach
crates in the ED that contain files of hard-copy section K issues that interviewers can give
participants upon request. The files are maintained by the outreach worker and the site
coordinator. Flyers are timely with accurate information - i.e. Boston tries to have the most
current information available. Any request for outreach follow-up is given to the outreach
worker, who records the information in a secure Access database. Individuals who answer
"yes" to the media question are also tracked in the database.

Little Rock: Level I. Little Rock does not have a project-specific outreach person. They
use the departments of Social Work and Financial Aid at the hospital if there is something
with which they can help. Little Rock provides a resource list with contact information
covering a variety of subjects, including abuse, child care, child development/education,
child support enforcement, food resources, immigrant services, Hispanic ministries,
homeless, legal aid, medical care for adults, Native American resources, respite, shelters,
tax preparation assistance, transportation, utility assistance, etc. They also hand out
current Angel Food Ministries menus and contact information.

Minneapolis: Level II. After the interview is completed, Children‟s HealthWatch staff
provides families in need with lists of community resources in their area. Families identified
through the survey as being food insecure and/or in need of other assistance are referred to
our bilingual (Spanish/English) community health worker. The community health worker
helps families with applications to various community services, provides food or personal
products, like diapers or clothes, as needed, makes appointments for hospital services, and
provides counseling on child development and health. She works with the hospital clinic
staff, various community staff, and social services to get the help the participants need.

Philadelphia: Level I. Philadelphia does not have a dedicated outreach person. The site
coordinator works with research coordinators to ensure outreach requests are met. Every
person interviewed in the ED is offered outreach assistance and a copy of our outreach
brochure that is a quick reference of our most requested services. Once the interviews
arrive in the office, the site coordinator enters all of the outreach requests and relevant
contact information into a secure database. From there the research assistants provide

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personalized outreach packets. The information provided in these packets is current and
checked for accuracy every few months. All of our information has also been translated and
checked in Spanish for our Spanish requests.

Story-banking for Media/Report Purposes
Stories relevant to the programs we address in the interview are very useful for media
purposes, when reporters want to put a „face‟ on a problem, and also for policy report
purposes, when we want to illustrate how a program supports (or is not adequate for)
children‟s health.

In Section L, please briefly describe the family‟s experience (positive or negative) with
public assistance programs or other relevant issues. For example, other pertinent
information would include housing conditions (overcrowding, doubling up etc.), immigration,
trade-off decisions between basic needs forced by the household‟s economic situation etc.

A hypothetical example:
Sue is the mother of two young children, ages four and two. She works as a nurse‟s aide
part-time and does not receive health or other benefits. Her children are covered by
Medicaid but she is not. Because she has high blood pressure, she needs to buy a special
diet and take medication. Her medication costs, however, are so high that each month she
must choose between buying her medication or paying household bills. To cope, she takes
half her needed dose and chooses one bill each month not to pay. She receives SNAP and
WIC benefits, which ensure that her children eat well, even when she does not.

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                            SECTION L: PROTOCOL MEMOS

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Boston, Baltimore and Little Rock participate in the collection of surveillance data.

Surveillance Information Collected
The following information (same as on abstraction form) for caregivers with children up to
age 36 months will be collected and entered weekly into the DCC website

1. Medical Record Number
2. Site (generated by login)
3. Date of abstraction
4. Abstractor‟s initials
5. Date of visit
6. Visit Type
7. Child‟s date of birth
8. Insurance
9. Admission
10. Dehydration
11. Child‟s sex
12. Child‟s weight
13. Child‟s height/length
14. Child‟s birthweight
15. Child‟s gestational age
16. Child‟s place of birth
17. Child‟s race/ethnicity
18. Zip code

The data listed in „Surveillance Information Collected‟ shall be collected for the following
   group ONLY:
   Children ages 0-36 months whose caregivers have been interviewed by a Children‟s
   HealthWatch interviewer, whether this resulted in a complete or incomplete interview

If the information for these groups of children does not present itself through the interview
process (e.g. as in Group #2), the information will be obtained through a review of the
medical record.

We do not collect surveillance information for the following groups of children:
1. Children ages 0-36 months whose caregivers have been determined to be ineligible for
    the Children‟s HealthWatch interview on the day they seek care at our respective
    hospitals (e.g. because of language issues, interviewed within last 6 months, insufficient
    knowledge of child‟s household, household lives out-of-state).
2. Children ages 0-36 months whose caregivers bring them to the ER, acute/primary care
    clinic at times when Children‟s HealthWatch interviewers are not present or when they
    are unable to be approached by Children‟s HealthWatch interviewers.
3. Children ages 0-36 months whose caregivers have refused to participate in the interview.

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Baltimore, Boston and Little Rock “flag” interviewed children who are at-risk for Failure To
Thrive by contacting the respective child‟s primary care provider. “At-risk” is defined as a
child who falls into the following categories: under the 5th percentile for weight-for-age
and/or under the 10th percentile for weight-for-height, and there is no known, currently
addressed cause for the low percentiles. These children can be identified through weekly
reports generated by the DCC. If there is confusion over whether or not a child fits these
criteria, the site PI should be consulted.

Last updated October 2009                                                                      48

Last updated October 2009                                   49

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APPENDIX A: Preferred Others

                                 PREFERRED OTHERS
 This document provides you with a list of all questions in the Children‟s HealthWatch
   interview that have an „other‟ option and the most common answers to the „other‟
 options for as many questions as possible. While we prefer that you fit participants‟
answers into the existing answer options or these preferred other categories, there will
be times when none of these describes the participant‟s response. In that case, please
                       briefly and clearly summarize the answer.

Section A: Screening
Question 3:

Section C: Demographics
Question 4:

Question 6:

Section D: Employment
Question 11 (incorporates former Q7):
-IMMIGRATION ISSUES (i.e. work visa expired etc.)
-WORK CONFLICT (i.e. problem with employer)
Section E: Child's Health History
Question 7:
-NEW BABY (hasn‟t yet decided)

Question 10:

Question 10a:

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Question 12:

Question 13:

Question 14:

Question 20:
-BASIC NECESSITIES (baby clothes, diapers etc.)

Section G: Child's Household
Question 1:
Section H: Energy
Question 1:

Question 2:

Question 3:
Section J: State or Federal Assistance
Question 4:

Question 5:

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Question 8:

Question 12:

Question 16:

Question 17:

Question 20:

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Question 23:

Question 25:

Section K: Resource Information
Question1 - option t:

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APPENDIX B: Sample Shift Log (from Boston)
 Date:                            Name:                           Hours Worked:                     # of Hours Worked
Did Family Receive
Handouts?                            Y / N            Y / N            Y / N             Y / N            Y / N                Y / N
Outreach Worker
Requested?                           Y / N            Y / N            Y / N             Y / N            Y / N                Y / N
                                     Child 1          Child 2          Child 3           Child 4          Child 5              Child 6
                                      M/F              M/F              M/F               M/F              M/F                  M/F
                              D.O.B.           D.O.B.           D.O.B.            D.O.B.           D.O.B.               D.O.B.
                              Wt @ visit       Wt @ visit       Wt @ visit        Wt @ visit       Wt @ visit           Wt @ visit
                              Gest (#wks)      Gest (#wks)      Gest (#wks)       Gest (#wks)      Gest (#wks)          Gest (#wks)
                              Birth Wt (lbs)   Birth Wt (lbs)   Birth Wt (lbs)    Birth Wt (lbs)   Birth Wt (lbs)       Birth Wt (lbs)
      Child’s LAST Name:
     Child’s FIRST Name:
               Child’s MRN:
Reason if not approached:
              INTERVIEW?:            Y / N            Y / N            Y / N             Y / N            Y / N                Y / N
       Avg. Length (cm):
  Reason if not measured:
          If not interviewed: refused:         refused:         refused:          refused:         refused:             refused:
                              language:        language:        language:         language:        language:            language:
                               <6 mo.           <6 mo.           <6 mo.            <6 mo.           <6 mo.               <6 mo.
                              Interv:          Interv:          Interv:           Interv:          Interv:              Interv:
                              N/K of           N/K of           N/K of            N/K of           N/K of               N/K of
                              household:       household:       household:        household:       household:           household:
                              out/state:       out/state:       out/state:        out/state:       out/state:           out/state:

INCOMPLETE INTERVIEW?                    Y/N             Y/N             Y/N               Y/N             Y/N                  Y/N
         Reason for Incomplete

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APPENDIX C: Diagnosis Categories

INCLUDING: Eloped from ER, Follow-up visit, parental concern, sent to clinic, suture
removal, well child, colic.

INCLUDING: otitis media, upper respiratory infection, pharyngitis, stomatitis, sinusitis,
croup, strep throat, tonsillitis.

INCLUDING: bronchitis, bronchiolitis (RSV), pneumonia.

INCLUDING: Dehydration (hypovolemia).

INCLUDING: pyelonephritis.


INCLUDING: r/o sepsis, septicemia, viral syndrome, viral illness, unspecified viral
infection, adenopathy, lymphadenitis, chest congestion, cellulitis, balanitis, runny nose,
cough, cold, bacteremia, scarlet fever, viral enathem, hand/foot/mouth disease,
coxsackie, varicella, H. Influenza, measles, mumps, pertussis, rubella, whooping cough,
osteomylitis, fever, thrush, herpes, herpengina, pyrexia unknown origin.

INCLUDING: respiratory distress, wheezing, RAD

INCLUDING: gastro-intestinal reflux, Irritable bowel disease (IBD), constipation.

INCLUDING: candida, Chlamydia, dermatitis, diaper rash, eczema, impetigo, yeast
infection, urticaria, viral exanthema.

INCLUDING: lice, scabies, ringworm, tinea capitis, tinea corporis


INCLUDING: FTT, Malnutrition, nutritional anemia.

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INCLUDING: teething



INCLUDING: seizures, headache, change of mental status, meningitis, apnea, syncope,
hypoxia, palsy, febrile convulsions, ALTE (acute life threatening episode).

INCLUDING: abrasion, burn, bite, dislocation, fracture, head trauma, hematoma,
inhalation, laceration, motor vehicle accident, nursemaid‟s elbow, sublaxation, trauma,
nose bleed, bruise.

INCLUDING: family violence, intentional injury, abuse, sexual abuse, neglect, poor
parenting, medical clearance for Department of social services.

INCLUDING: poisoning, foreign body, lead poisoning.

INCLUDING: Hernia, G6PD, Down‟s Syndrome

INCLUDING: neonatal hyperbilirubinemia, jaundice, newborn complaint, umbilical cord
infection, feeding intolerance.




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APPENDIX D: Master PEDS Coding List

Caregiver Response                                         Code as:
seems behind; can‟t do what other kids can; slow           Yes to Question 1 (Global/Cognitive)
and behind other kids; immature; learns slowly; late
to learn to do things; learns but takes a long time;
problems with learning everything; concern about
prenatal drug use; delayed; doesn‟t explore with
hands/mouth; doesn‟t sort by shape or color;
doesn‟t match items; doesn‟t imitate gestures;
doesn‟t explore objects in multiple ways (bang,
shake, drop, throw); doesn‟t use objects correctly
(phone, hair brush, sippy cup); doesn‟t find hidden
not talking like he should; uses short sentences;          Yes to Question 2 (Expressive Language and
can‟t always say what she means; doesn‟t always            Articulation
make sense; nobody understands what he is
saying but me; uses few words; can‟t talk plain
doesn‟t understand what you say; doesn‟t listen            Yes to Question 3 (Receptive Language)
can‟t draw shapes; can‟t hold a pencil right; can‟t        Yes to Question 4 (Fine Motor)
get food to mouth with a spoon yet and so is a
messy eater
clumsy; walks funny; can‟t ride a bike yet; falls a lot;   Yes to Question 5 (Gross Motor)
limps; poor balance; not physically developing for
his age; not sitting up yet; doesn‟t know how to
crawl yet; late to walk; awkward
stubborn; over-active; short attention span; spoiled;      Yes to Question 6 (Behavior)
aggravating; throws fits; only does what she wants;
behavior problems; hyper; terrible two‟s; tantrums;
self-injury; aggression; touches things too much;
disobedient; is a handful; fights a lot; ignores
parent; doesn‟t listen well (i.e. obey); won‟t mind
wants to be left alone; mood swings; clingy; whiny;        Yes to Question 7 (Social-emotional)
bothered by changes; angry; disinterested in usual
things; easily led; acts mean; easily frustrated;
bossy; shy; class clown; mean; hates me; cries too
much; afraid of strangers; doesn‟t have friends;
social trouble in daycare/preschool
won‟t do things for herself; won‟t tell me when he‟s       Yes to Question 8 (Self-help)
wet; not toilet trained yet; still wants a bottle; can‟t
get dressed by herself
doesn‟t know colors or numbers; just not learning to       Yes to Question 9 (School)
read; can‟t remember letter sounds; trouble in
daycare/preschool; won‟t sit still; can‟t concentrate
ear infections; asthma; small for age (low weight);        Yes to Question 10 (Other Developmental
weight concerns; not eating enough; very small             Concerns/Medical)
appetite; sick a lot; thinks baby should be bigger
(height/length); doesn‟t hear well; gets up too close      If the concern is purely health-related and has
to TV and I worry about her sight; trouble weaning         no developmental implications (e.g.
off of pacifier; doesn‟t play make-believe; family         ______________), code answer option #3 (only
issues; seizures; premature; ADD/ADHD; FTT;                acute health concerns)
born with substances; lead; brain damage

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Chapter II: Scoring, Administration and Interpretation Guidelines (F. Glascoe)

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APPENDIX F: Sample Resource List (from Boston)

PROJECT BREAD HOTLINE                                              1-800-645-8333
Referral information for emergency food assistance, meal sites, pantries, and farmer’s markets

FOOD STAMP (SNAP) OFFICE                                                 1-800-645-8333
Information about Food Stamp (SNAP) benefits (application & eligibility).

WIC - BOSTON MEDICAL CENTER                                          (617) 414-3370
Information regarding WIC program eligibility

MASS. HOUSING & COMMUNITY DEVELOPMENT.                        1-800-632-8175
Provides information regarding fuel assistance
You may also call Action for Boston Community Development, Inc. (ABCD): 617-348-6000
       -Boston                                                617-357-6012
       -South End Neighborhood Action                         617-267-7400 x227
       -Roxbury/Dorchester                                    617-288-2700 x204
CHILDCARE INFORMATION: ABCD                                   617-438-6000
                             Childcare Choices                617-542-5437 x6641
                                                           9:30am-3:30pm weekdays

EDUCATION/TRAINING:                 ABCD                             617-357-6000 x7516

BMC FAMILY HELP DESK- 5TH FLR. YAWKEY BLDG 617-414-4349; 2pm-4pm
Family advocates can provide information about immigration, education/job training, childcare
programs, health insurance and welfare questions.

BMC SOCIAL WORKER                                                 617-414-5453
For information regarding heat, housing, income, medical insurance, and food.

MEDICAL LEGAL PARTNERSHIP FOR CHILDREN                                617-414-3654
Free advice and/or assistance for families experiencing difficulties in receiving State or
Federal program assistance.

CHILDREN’S HEALTHWATCH OUTREACH COORDINATOR                                           617-414-6368
The Children’s HealthWatch survey outreach worker will help you resolve a problem or refer you to
social workers or legal advocates to assist you.

BMC MENTAL HEALTH COUNSELING                                           617-414-5245
For assistance if you feel sad, blue, or depressed or lost pleasure in things you usually enjoyed or
cared about.

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FOOD                                                           1-800-645-8333
Free or Low-Cost Lunch & Breakfast Program for children in school. Apply anytime
your job/money situation changes. Also CALL your child’s school (

EMERGENCY FOOD                                                     1-800-645-8333
For a referral to an emergency food pantry or meal site.

SERVE NEW ENGLAND                                                1-888-742-7363
Low cost food for those willing to do two hours of community service. Call for a site near you.

MASS HEALTH                                                      1-800-841-2900
Health care for low & middle income people living in Massachusetts.

CHILDREN’S MEDICAL SECURITY PLAN                                  1-800-909-2677
Provides children & adolescents with access to primary care & preventative services.

UTILITIES                                                           1-800-909-2677
Fuel Assistance helps pay winter heating bills, weatherization, heating systems repairs & water & sewer

MASS ENERGY                                                         1-800-287-3950
For low annual fee, reduces heat, gas & electric costs for consumer in Greater Boston.

CITIZENS ENERGY                                                1-877-563-4645
This program re-opens every December, and provides one-time help with oil bill.

LEGAL SERVICES                                                  1-800-342-5297
Legal Advocacy Resource Center: Provides free legal assistance on bankruptcy, divorce & other issues
to low-income consumers.

UNEMPLOYMENT INSURANCE/JOB TRAINING                              617-626-6800
                                             (other area codes) 1-877-626-6800
For more information on the unemployment insurance program, how to file for benefits, and how to
obtain job search and retraining assistance.

CREDIT COUNSELING                                                    1-800-282-6196
Consumer Credit Counseling of Southern N.E.
Helps individuals to gain control of their personal finances through counseling, education and debt
management plans.

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APPENDIX G: Sample Outreach Database

Last updated October 2009              62

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