Manual of Operations: Children’s HealthWatch Data Collection Last Updated: October 2009 Table of Contents: I. General Instructions Site Information Children’s HealthWatch Site Responsibilities for Interview Data Children’s HealthWatch Interview Inclusion Criteria Guidelines for Children’s HealthWatch Interview Format and Structure General Instructions for Interviewers Interview Guide Introduction & Protocol Memo Coding Page 1 Coding 3 4 6 8 9 11 12 II. Section specific Instructions Section A: Screening Section B: Developmental Questions Section C: Demographics Section D: Employment Section E: Child Health History Section F: Maternal Health Section F(2): Parent Height and Weight Section G: Child’s Household Section H: Energy Questions Section I: Household Food Security Scale Section J: State or Federal Assistance Section K: Resource Information Section L: Outreach Program 14 17 20 22 24 27 27 29 32 34 37 40 43 III. Surveillance Data Collection and Uses Surveillance Data and Flagging Procedures 47 IV. Appendix Appendix A: Preferred Others Appendix B: Sample Shift Log Appendix C: Diagnosis Categories Appendix D: PEDS Master Coding List Appendix E: PEDS Chapter (F. Glascoe) Appendix F: Sample Resource List Appendix G: Sample Outreach Database 51 55 56 58 59 60* 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. Last updated October 2009 2 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 aquigg@peds.umaryland.edu Tel. (410) 706-8308 Boston, Massachusetts (1998-present) ED only, Grow Clinic for Children Research Coordinator: Katherine Joyce, MPH katherine.joyce@bmc.org Tel. (617) 414-3580 Little Rock, Arkansas (1998-present) ED only, Growth and Development Clinic Site Coordinator: Kathleen W. Barrett, MSE barrettkathleenw@uams.edu 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 jonigeppert@hotmail.com Tel. (612) 873-4497 HCMC or (651) 201-3613 MDH Tu Quan, MPH tu.quan@hcmed.org Tel. (612) 873-6346 Philadelphia, Pennsylvania (2004-present), ED only, The Philadelphia Grow Project Site Coordinator: Jennifer Breaux, MPH jrb43@drexel.edu 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 sedc@bu.edu Tel. (617) 638-5850 Last updated October 2009 3 CHILDREN’S HEALTHWATCH SITE RESPONSIBILITIES FOR INTERVIEW DATA: • • • • • • • • • • • • • • • 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 time. 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 http://phrp.nihtraining.com/users/login.php. 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 (zy@bu.edu), 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 Last updated October 2009 4 Email Zhao to let her know that a package has been sent: zy@bu.edu 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: https://dcc2.bumc.bu.edu/download 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 • • • 1 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. Last updated October 2009 5 CHILDREN’S HEALTHWATCH INTERVIEW INCLUSION CRITERIA: AGE CRITERIA: 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) VISIT CRITERIA: • 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. OTHER CRITERIA: • 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. OTHER CONSIDERATIONS: • If a child cannot be measured due to medical reasons, the caregiver may still be interviewed. • 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. PARENTAL CONSENT: • 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 Last updated October 2009 6 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 Last updated October 2009 7 GUIDELINES FOR CHILDREN’S HEALTHWATCH INTERVIEW FORMAT AND STRUCTURE: • • • • • • • • • 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 status.” 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. Last updated October 2009 8 GENERAL INSTRUCTIONS FOR INTERVIEWERS: 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 develop. 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 Last updated October 2009 9 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. 2 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. Last updated October 2009 10 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 Last updated October 2009 11 PAGE 1: CODING AT TOP OF PAGE: 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 NOTE: 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. Last updated October 2009 12 INTERVIEW GUIDE: PROTOCOL MEMOS Last updated October 2009 13 SECTION A: SCREENING: 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 sibling. Part 2: Sibling of previously interviewed child is brought for care with same caregiver in clinic/ED 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 Last updated October 2009 14 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. Last updated October 2009 15 SECTION A: PROTOCOL MEMOS Last updated October 2009 16 SECTION B: DEVELOPMENTAL QUESTIONS 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 www.pedstest.com. IMPORTANT CODING INSTRUCTIONS FOR DEVELOPMENTAL QUESTIONS: • 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 Last updated October 2009 17 • 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. OUTREACH REFERRALS FOR CONCERNED PARENTS: 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 factors.” 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. Last updated October 2009 18 SECTION B: PROTOCOL MEMOS Last updated October 2009 19 SECTION C: DEMOGRAPHICS 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.” Last updated October 2009 20 SECTION C: PROTOCOL MEMOS Last updated October 2009 21 SECTION D: EMPLOYMENT QESTIONS 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. OPTION 1: IF CAREGIVER WORKING 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 OPTION 2: IF CAREGIVER NOT WORKING 12. 'Unemployment benefits' 13. ‘Other adults employed in the household’ We want a total count, including the child’s caregiver. 14. ‘Moneywise’ 3 In the electronic interview, participants will be able to select as many as apply. Last updated October 2009 22 SECTION D: PROTOCOL MEMOS Last updated October 2009 23 SECTION E: CHILD’S HEALTH HISTORY AND INSURANCE COVERAGE 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 Last updated October 2009 24 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. 4 The electronic version will have a skip pattern, but there is no current skip pattern. Last updated October 2009 25 SECTION E: PROTOCOL MEMOS Last updated October 2009 26 SECTION F: MATERNAL HEALTH QUESTIONS 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. SECTION F(2): PARENT HEIGHT AND WEIGHT 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 measurements. 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 pregnant. b. 'Father's weight' “What is the father’s weight?” Last updated October 2009 27 SECTION F: PROTOCOL MEMOS Last updated October 2009 28 SECTION G: CHILD’S HOUSEHOLD 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' Last updated October 2009 29 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?’ Last updated October 2009 30 SECTION G: PROTOCOL MEMOS Last updated October 2009 31 SECTION H: ENERGY QUESTIONS 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.’) Last updated October 2009 32 SECTION H: PROTOCOL MEMOS Last updated October 2009 33 SECTION I: HOUSEHOLD FOOD SECURITY SCALE 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 written. 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 SECTION J. 13. ‘Child cut size of meals’ 14. ‘Child skip meals’ Last updated October 2009 34 14a. ’How often’ 15. ‘Child ever hungry’ 16. ‘Child ever not eat for whole day’ Last updated October 2009 35 SECTION I: PROTOCOL MEMOS Last updated October 2009 36 SECTION J: STATE OR FEDERAL ASSISTANCE 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 question. 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 5 Skip patterns for Qs 10-11 have been fixed in electronic version to deal with child-only cases. Last updated October 2009 37 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 Cupboard” 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 Last updated October 2009 38 SECTION J: PROTOCOL MEMOS Last updated October 2009 39 SECTION K: RESOURCE INFORMATION INTERVIEW CONCLUSION 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 services (C) WIC (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 kitchens (K) Employment training (L) Depression or mental health services (M) Interpreter services (N) social worker/social services (O) Legal services/ advocacy for housing, child support, immigration crisis (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. 6 Last updated October 2009 40 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: TANF SNAP WIC 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 well. 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 procedures. Last updated October 2009 41 SECTION K: PROTOCOL MEMOS Last updated October 2009 42 SECTION L: OUTREACH PROGRAM 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 interview. 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. Last updated October 2009 43 Children’s HealthWatch Research Sites’ Outreach Programs As of August 2009, active Children’s HealthWatch sites provided the following levels of outreach: 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 resources. 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 Last updated October 2009 44 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. Last updated October 2009 45 SECTION L: PROTOCOL MEMOS Last updated October 2009 46 SURVEILLANCE DATA 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 (http://dcc2.bumc.bu.edu/csnap): 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. Last updated October 2009 47 FLAGGING AT-RISK CHILDREN 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 SURVEILLANCE DATA: PROTOCOL MEMOS Last updated October 2009 49 APPENDIX Last updated October 2009 50 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: -ADOPTIVE MOTHER/FATHER -FOSTER MOTHER/FATHER -GRANDMOTHER -AUNT -OTHER RELATIVE (INCLUDING GODPARENTS) Section C: Demographics Question 4: -AMERICAN BORN OVERSEAS Question 6: _____________________________________________________________ Section D: Employment Question 11 (incorporates former Q7): -IMMIGRATION ISSUES (i.e. work visa expired etc.) -BUDGET CUTS -NEW SHIFT / LESS HOURS -OVERTIME SUSPENDED -PERSONAL CHOICE -WORK CONFLICT (i.e. problem with employer) -WORK STUDY FUNDS ENDED -DOMESTIC VIOLENCE ____________________________________________________________ Section E: Child's Health History Question 7: -DOES NOT RECIEVE MEDICAL CARE -NEW BABY (hasn’t yet decided) -MOVED Question 10: -TRICARE/MILITARY INSURANCE Question 10a: -LOST AND REGAINED HEALTH INSURANCE Last updated October 2009 51 Question 12: -PENDING -INELIGIBLE -CUT-OFF Question 13: -LOSS OF COVERAGE -PAYS OUT OF POCKET Question 14: -HAS TO PAY FULL PRICE FOR MEDICATIONS Question 20: -BASIC NECESSITIES (baby clothes, diapers etc.) -DEBT PAYMENTS ____________________________________________________________ Section G: Child's Household Question 1: -CAR -NO STEADY PLACE TO SLEEP AT NIGHT _____________________________________________________________ Section H: Energy Question 1: -PROPANE/KEROSENE -WOOD Question 2: Question 3: __ _________________________________________________________ Section J: State or Federal Assistance Question 4: -CHILD PLACED WITH DSS -FAMILY CAP BABY -HAS NEED BUT NOT INCOME ELIGIBLE -LOST CUSTODY OF CHILD (TO DAD) -MISCONCEPTION ABOUT WELFARE RULES -MOVED FROM OUT OF STATE -NO PERMANENT ADDRESS Question 5: -DID NOT PROVIDE INFORMATION/UPDATE WELFARE OFFICE -NO PERMANENT ADDRESS Last updated October 2009 52 -REACHED TIME LIMIT -RECEIVES SSI -WILL NOT FILL OUT MANDATORY CHILD SUPPORT PAPERWORK Question 8: -ADMINISTRATIVE ERROR -CRIMINAL RECORD -DID NOT MEET $40 RENT REQ -DID NOT PROVIDE INFORMATION/UPDATE WELFARE OFFICE -MOVED FROM OUT OF STATE -RECEIVING CHILD SUPPORT -RECEIVES SSI -RECENTLY APPLIED BUT NO RESPONSE FROM WELFARE OFFICE -WORKING WITHOUT REPORTING IT -2 YR GRANT REDUCTION -Massachusetts: DID NOT PROVIDE DOCUMENTATION PROVING CHILD’S IMMUNIZATIONS (“SHOT-FARE”) -PROBLEM WITH SOCIAL/CASE/FINANCIAL WORKER -STATE WELFARE CUTS -IMMUNIZATION STATUS -CHILD-ONLY CASE Question 12: -SUPPORTED BY RELATIVE Question 16: -BENEFIT TOO LOW -EMERGENGY SNAP BENEFITS -H.H. ALREADY COVERED -HAS NEED; RECENTLY APPLIED BUT NO RESPONSE FROM SNAP OFFICE -INCARCERATION -MISSING PAPERWORK -NO PERMANENT ADDRESS -2 YR GRANT REDUCTION -LOST CUSTODY OF CHILD -MISCONCEPTION ABOUT RULES Question 17: -CHILD TURNED 18; COMMUNITY SERVICE/SCHOOL REQ NOT FULLFILLED -WORK/COMMUNITY SERVICE/SCHOOL REQ NOT FULLFILLED -MOVED Question 20: -FATHER DIDN’T COMPLETE WORK REQUIREMENTS -STARTED GETTING UNEMPLOYMENT Last updated October 2009 53 -2 YR GRANT REDUCTION Question 23: -CHILD ILLNESS -DID NOT RE-CERTIFY -DON'T KNOW PROGRAM -NEW BABY -OFFICE REQUESTED UNNECESSARY DOCUMENTS -MISCONCEPTION ABOUT RULES Question 25: -EARLY INTERVENTION -RELATIVE WHO COMES TO THE HOUSE Section K: Resource Information Question1 - option t: Last updated October 2009 54 APPENDIX B: Sample Shift Log (from Boston) Date: Name: Did Family Receive Handouts? Outreach Worker Requested? Y / N Hours Worked: Y / N Y / N # of Hours Worked Y / N Y / N Y / N Y / N Y / N Y / N Y / N Y / N Y / N Child 1 M/F D.O.B. Wt @ visit Gest (#wks) Birth Wt (lbs) Child 2 M/F D.O.B. Wt @ visit Gest (#wks) Birth Wt (lbs) Child 3 M/F D.O.B. Wt @ visit Gest (#wks) Birth Wt (lbs) Child 4 M/F D.O.B. Wt @ visit Gest (#wks) Birth Wt (lbs) Child 5 M/F D.O.B. Wt @ visit Gest (#wks) Birth Wt (lbs) Child 6 M/F D.O.B. Wt @ visit Gest (#wks) Birth Wt (lbs) Y / N Y / N Y / N Y / N Y / N Y / N Child’s LAST Name: Child’s FIRST Name: Child’s MRN: Reason if not approached: COMPLETED INTERVIEW?: Avg. Length (cm): Reason if not measured: If not interviewed: refused: language: <6 mo. Interv: N/K of household: out/state: INCOMPLETE INTERVIEW? Y/N refused: language: <6 mo. Interv: N/K of household: out/state: Y/N refused: language: <6 mo. Interv: N/K of household: out/state: Y/N refused: language: <6 mo. Interv: N/K of household: out/state: Y/N refused: language: <6 mo. Interv: N/K of household: out/state: Y/N refused: language: <6 mo. Interv: N/K of household: out/state: Y/N Reason for Incomplete Interview Last updated October 2009 55 APPENDIX C: Diagnosis Categories CATEGORY 01: WELL CHILD CARE: INCLUDING: Eloped from ER, Follow-up visit, parental concern, sent to clinic, suture removal, well child, colic. CATEGORY 02: UPPER RESPIRATORY INFECTION: INCLUDING: otitis media, upper respiratory infection, pharyngitis, stomatitis, sinusitis, croup, strep throat, tonsillitis. CATEGORY 03: LOWER RESPIRATORY INFECTION: INCLUDING: bronchitis, bronchiolitis (RSV), pneumonia. CATEGORY 04: GASTROENTERITIS/VOMITING/DIARRHEA INCLUDING: Dehydration (hypovolemia). CATEGORY 05: URINARY TRACT INFECTION INCLUDING: pyelonephritis. CATEGORY 06: CONJUNCTIVITIS CATEGORY 07: OTHER INFECTIONS/ FEBRILE STATES 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. CATEGORY 08: ASTHMA, REACTIVE AIRWAY DISEASE INCLUDING: respiratory distress, wheezing, RAD CATEGORY 09: ABDOMINAL PAIN/ OTHER GI INCLUDING: gastro-intestinal reflux, Irritable bowel disease (IBD), constipation. CATEGORY 10: SKIN INFECTION/ RASH INCLUDING: candida, Chlamydia, dermatitis, diaper rash, eczema, impetigo, yeast infection, urticaria, viral exanthema. CATEGORY 11: INFESTATION INCLUDING: lice, scabies, ringworm, tinea capitis, tinea corporis CATEGORY 12: DEVELOPMENTAL DELAY/ BEHAVIOR / PYSCHIATRIC DISORDER CATEGORY 13: NUTRITIONAL DEFICIENCY INCLUDING: FTT, Malnutrition, nutritional anemia. Last updated October 2009 56 CATEGORY 14: DENTAL CARIES/ ABSCESS/ TOOTHACHE INCLUDING: teething CATEGORY 15: ALLERGY INCLUDING: hives. CATEGORY 16: CARDIAC CATEGORY 17: CENTRAL NERVOUS SYSTEM INCLUDING: seizures, headache, change of mental status, meningitis, apnea, syncope, hypoxia, palsy, febrile convulsions, ALTE (acute life threatening episode). CATEGORY 18: INJURY INCLUDING: abrasion, burn, bite, dislocation, fracture, head trauma, hematoma, inhalation, laceration, motor vehicle accident, nursemaid’s elbow, sublaxation, trauma, nose bleed, bruise. CATEGORY 19: SOCIAL INCLUDING: family violence, intentional injury, abuse, sexual abuse, neglect, poor parenting, medical clearance for Department of social services. CATEGORY 20: INGESTION/ INTOXICATION/ PLUMBISM INCLUDING: poisoning, foreign body, lead poisoning. CATEGORY 21: CONGENITAL SYNDROMES INCLUDING: Hernia, G6PD, Down’s Syndrome CATEGORY 22: NEONATAL INCLUDING: neonatal hyperbilirubinemia, jaundice, newborn complaint, umbilical cord infection, feeding intolerance. CATEGORY 23: OTHER CATEGORY 24: HIV/ SICKLE CELL CATEGORY 99: DIAGNOSIS NOT KNOWN Last updated October 2009 57 APPENDIX D: Master PEDS Coding List Caregiver Response seems behind; can’t do what other kids can; slow 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 objects; not talking like he should; uses short sentences; can’t always say what she means; doesn’t always 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 well can’t draw shapes; can’t hold a pencil right; can’t 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; 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; 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 me wants to be left alone; mood swings; clingy; whiny; 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 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 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); weight concerns; not eating enough; very small appetite; sick a lot; thinks baby should be bigger (height/length); doesn’t hear well; gets up too close to TV and I worry about her sight; trouble weaning off of pacifier; doesn’t play make-believe; family issues; seizures; premature; ADD/ADHD; FTT; born with substances; lead; brain damage Last updated October 2009 Code as: Yes to Question 1 (Global/Cognitive) Yes to Question 2 (Expressive Language and Articulation Yes to Question 3 (Receptive Language) Yes to Question 4 (Fine Motor) Yes to Question 5 (Gross Motor) Yes to Question 6 (Behavior) Yes to Question 7 (Social-emotional) Yes to Question 8 (Self-help) Yes to Question 9 (School) Yes to Question 10 (Other Developmental Concerns/Medical) If the concern is purely health-related and has no developmental implications (e.g. ______________), code answer option #3 (only acute health concerns) 58 APPENDIX E: PEDS Chapter Chapter II: Scoring, Administration and Interpretation Guidelines (F. Glascoe) Last updated October 2009 59 APPENDIX F: Sample Resource List (from Boston) GENERAL LIST OF COMMUNITY RESOURCES 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 Information regarding WIC program eligibility (617) 414-3370 MASS. HOUSING & COMMUNITY DEVELOPMENT. 1-800-632-8175 HEATLINE 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 (BMC FAMILY ADVOCACY PROGRAM) 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. Last updated October 2009 60 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 (meals4kids.org). EMERGENCY FOOD For a referral to an emergency food pantry or meal site. 1-800-645-8333 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 bills 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. Last updated October 2009 61 APPENDIX G: Sample Outreach Database Last updated October 2009 62