Barriers and Solutions to Neonatal Follow-Up of High Risk Infants in the State of Utah

BARRIERS TO NEONATAL FOLLOW-UP 1

Running head: BARRIERS TO NEONATAL FOLLOW-UP

Barriers and Solutions to Neonatal Follow-up of High Risk Infants in the State of Utah

Juliana Briscoe, Sherrily Brown, Melissa Herzig, Kerry Prout, Debbie Thomas

Utah Regional Leadership Education in Neurodevelopmental Disabilities BARRIERS TO NEONATAL FOLLOW-UP 2

Abstract

The purpose of our study was to identify trends of attendance as well as barriers to Neonatal

Follow-up Program (NFP) participation for high-risk infants in the state of Utah, and to also provide the NFP with specific recommendations for improving the program’s participation of qualifying children and their families. Quantitative data was analyzed to observe the current attendance trends of referred infants to the NFP in Utah compared to the data of the number of referrals from the various NICU (Newborn Intensive Care Unit) facilities. In addition, qualitative data through focus groups were conducted with NICU professionals to obtain their baseline knowledge of what the NFP offers and to identify potential barriers to participation in the program. Focus groups with families were also held to discover perceptions of the value of the program and to identify possible attendance barriers to the NFP in Utah. All qualitative interview data were analyzed and frequent themes were identified based on participants’ responses. The identified attendance barriers included: lack of education provided to families and the NICU staff, lack of communication between the NFP and referring NICU’s, lack of a consistent contact for families at both NFP and NICU’s, distance of clinic locations, lack of the

NICU staff’s understanding of the priority of NFP regarding developmental instead of medical issues, and lack of parental understanding that development needs evaluation over time. Specific recommendations for improving NFP attendance to the NFP team included providing additional education to families and the NICU staff, improve the communication process between facilities, improve the NFP and NICU communication for family contacts, and provide additional NFP clinics. BARRIERS TO NEONATAL FOLLOW-UP 3

Barriers and Solutions to Neonatal Follow-up of High Risk Infants in the State of Utah

Nonattendance of qualifying Neonatal Intensive Care Unit (NICU) graduates at the

Neonatal Follow-up Program (NFP) resulted in less access to recommended services and underreporting of long-term developmental outcomes (Ballantyne, Stevens, Guttmann, Willan, &

Rosenbaum, 2012). In the state of Utah, nearly 100% of qualifying NICU graduates is referred to the NFP; however only 50% of these infants and their families actually participate in the NFP.

The purpose of the project was to identify trends of attendance as well as barriers to NFP participation for high-risk infants in the state of Utah. Identification of attendance trends via analysis of current quantitative data, and identifying the barriers via qualitative data collection, was a crucial step in improving program attendance. An additional purpose of this project was to provide recommendations to the NFP staff regarding interventions and strategies to improving the program’s participation of qualifying infants and their families.

Literature Review

Infants born with very low birth weights are at significant risk of neurologic abnormalities as well as developmental and functional delays. These unique infants require close follow up and monitoring after discharge to ensure that families receive appropriate support and intervention services to optimize their outcome potential (Vohr, Wright, Dusick, Mele, Verter,

Steichen, et al., 2000). NFP is an important component of care necessary for high-risk NICU graduates and their parent’s to receive appropriate support, timely diagnosis, referral to appropriate intervention services and assistance with the coordination of their care (Ballantyne et al., 2012; Vohr et al., 2000). Identifying the barriers to participation of infants and parents is a crucial first step in improving program attendance. BARRIERS TO NEONATAL FOLLOW-UP 4

In the state of Utah, all NICU graduates who were born at less than 26 weeks gestation or were born weighing less than or equal to 1250 grams, received extracorporeal membrane oxygenation (ECMO) treatment, or were diagnosed with hypoxic ischemic encephalopathy qualify for follow up through the NFP.

Within Utah, nearly 100% of qualifying NICU graduates are referred to the program; however, approximately 50% of these infants and their families are actually participating in the

NFP. This statistic was comparable to the 50% participation rate in the United States found by researchers (Ballantyne et al., 2012). With the nonattendance rate at nearly 50%, the time infants and their families were most likely to stop attending in the program was found to be between

NICU discharge and the first scheduled NFP appointment. Comparably, researchers have reported wide variation in nonattendance rates for this same time point, ranging from 9% to 72%

(Ballantyne et al., 2012).

Researchers have reported varying reasons for nonattendance among qualifying families.

Higher maternal stress during the infant’s NICU hospitalization, single parenting, maternal alcohol and drug use, and greater distance to the clinic site were indicative of decreased follow- up attendance. Likewise, various program factors have been reported to influence the attendance of families at neonatal follow-up. From a program standpoint, continuity of care as well as friendly and experienced staff was reported to have significant influence (Ballantyne et al.,

2012). From a patient-family standpoint, an understanding and awareness of the importance of follow-up care for their child was the most important motivating factor (Illinois Chapter of the

American Academy of Pediatrics, 2009; Hussey-Gardner, Wachtel, & Viscardi, 1998).

In light of identifying these barriers, qualitative data was collected through the utilization of focus groups. Focus groups have been touted as one of the best ways of obtaining qualitative BARRIERS TO NEONATAL FOLLOW-UP 5 data in order to achieve a research objective (Byers & Willcox, 1991). Additionally, focus groups have been praised as a highly efficient technique for qualitative data collection because the amount and range of data is increased when collected by several participants at the same time. Extreme views, overall trends, and topics of most importance were readily identified when there was a consistent and shared view (Robinson, 1999). This project aimed to produce qualitative data through the use of focus groups. An analysis of this extracted qualitative data, in combination with an analysis of quantitative data, was then analyzed in order to identify possible

NFP program attendance barriers and provide recommendations to the NFP staff regarding interventions and strategies to possible increase the follow-up rate of qualifying infants and their families in Utah.

Method

Quantitative data was analyzed in order to observe the current attendance trends of referred infants to the NFP in Utah compared to the data of the number of referrals from the various NICU facilities. Of the ten referring NICU’s, the two facilities with the highest no show rate percentage were chosen, these facilities were Primary Children’s Medical Center (PCMC) and McKay Dee Hospital. The quantitative data can be seen in Appendix A. Four focus groups were conducted, one at each of these NICU facilities and two at the NFP clinic locations closest to these facilities. Focus group one was conducted at PCMC and consisted of discharging and referring NICU professionals in Salt Lake City. Focus group two was conducted at McKay Dee

Hospital and consisted of discharging and referring NICU professionals in Ogden. Focus group three consisted of families participating in the NFP program at the Salt Lake City location.

Focus group four consisted of families participating in the NFP program at the Ogden location. BARRIERS TO NEONATAL FOLLOW-UP 6

The purpose of focus groups involving NICU professionals was to obtain qualitative data regarding the professional’s baseline knowledge of what the NFP offers, and to identify any potential barriers to participation in the program from the perspective of the professionals. The purpose of focus groups involving participating families was to obtain qualitative data regarding the family’s perceptions of the value of the program and to identify barriers to attendance.

Participant Characteristics and Selection Criteria

Participant selection for the focus groups of NICU professionals was accomplished via purposive sampling involving NICU professionals from two different geographical areas in Utah with lower NFP attendance rates, at Primary Children’s Medical Center and McKay Dee

Hospital. Professionals were selected based on having a role in the NICU discharge planning process. This included NICU professionals such as discharge planners, neonatal nurse practitioners, neonatologists, social workers, and developmental therapists (Physical

Therapists/Occupational Therapists/Speech Pathologists).

Participant selection for the focus groups of participating families was accomplished via a random sampling of parents/caregivers currently attending NFP clinics in the same two geographical areas as the NICUs. Families were invited to participate via a method of randomization with the final selection based on the family’s acceptance of invitation to participate. The randomized invitation process took place during the Salt Lake City and Ogden

NFP clinics in February of 2013.

Procedure

Group interviews were conducted during the focus groups to collect qualitative data in a natural environment. A moderator reviewed the consent form, which participants completed.

The moderator offered predetermined questions, guided the conversation, and discussion was BARRIERS TO NEONATAL FOLLOW-UP 7 allowed to flow as the participants voice their opinions, experiences, and interpretations relating to the subjects of discussion. The assistant moderator/s audiotaped and also took notes of the discussion. No self-report, paper and pencil measures were used in the current study. Questions included in the focus groups for families and NICU professionals are listed in Appendices B and

C respectively.

Measurement and Evaluation

At the conclusion of all four focus groups, the audiotapes were transcribed and compared to the notes to improve the reliability via two rater’s information. The summaries were analyzed to detect themes elicited from both professionals and families. These themes were identified and are listed in Appendices B and C. The information was presented to the NFP staff and included recommendations that are listed in Appendix D.

Rationale for Measures

Qualitative data derived from focus groups consisting of NICU professionals elicited the information needed to offer recommendations to the NFP staff regarding their collaborative role with the referring NICUs. Through interpretation of this qualitative data, this project sought to generate communication and other intervention strategies to improve the NFP referral procedures and ultimately, to improve the attendance rates.

Qualitative data derived from focus groups consisting of participating families elicited the information needed to offer recommendations to the NFP staff. Through interpretation of this qualitative data, this project sought to generate intervention strategies to improve NFP participation of qualifying families. BARRIERS TO NEONATAL FOLLOW-UP 8

Results

During the study eight families of the NFP participated in focus groups, with three participating from the Salt Lake City clinic and five from the Ogden Clinic. Ten professionals participated in focus groups for the current study, with three from the McKay Dee Hospital and seven from Primary Children’s Medical Center. Professionals ranged from case managers/discharge planners, a neonatologist, a social worker, and developmental therapists

(Physical Therapists/Occupational Therapists/Speech Pathologists). All focus group sessions were lead by at least two members of the investigative team who posed previously specified discussion questions for family and professional focus groups. All focus group sessions were audio recorded and later transcribed. In addition, investigators present at each focus group took relevant notes on participant responses.

Data Analysis

All qualitative interview data were analyzed as follows. Investigators first read focus group notes and transcribed records to become familiar with the participant’s responses on discussion points. Then, once accustomed with the qualitative data, significant and frequent themes were identified based on the participants’ responses. The investigators created two tables representing the themed data in order to document and categorize qualitative data more effectively. This chart was used to summarize qualitative findings and to more adequately highlight areas of feedback from focus group participants. The data summary charts are included in Appendices B and C.

Professional Focus Group Qualitative Findings

The qualitative data gleaned from the focus groups conducted with NICU professionals resulted in some identified trends. In general, NICU professionals were familiar with the BARRIERS TO NEONATAL FOLLOW-UP 9 services provided by the NFP though they were generally unfamiliar with the timing of these services. They were correct in their understanding of NFP funding and the cost to families.

They were also correct in their understanding of the three clinic locations, though some believed there was a fourth clinic in St. George as well, which there is not at this time. They identified the value of the NFP as a means of early identification of developmental problems, thus leading to timely referral and improved outcomes. They also identified the value of heightened family awareness and support regarding developmental needs of the NICU graduate. As program disadvantages, professionals voiced the concerns that infants are not seen soon enough and often enough during the first year following NICU discharge. Professionals also had concerns regarding the long waiting times between professionals and suggested having a visual aid for families such a check off sheet of the various professionals seeing the child during that visit.

They also reported that families may be in denial regarding developmental risk, or may not perceive program participation as being valuable to their child.

The professionals were generally able to correctly identify the referral criteria for the

NFP. The referral process was described differently between the two facilities. At one facility, weekly discussions occurred between the case manager and an NFP staff member regarding qualifying infants. Parents of qualifying infants then receive letters that are either placed at the infant’s bed space while in the NICU, or via mail. Upon NICU discharge of qualifying infants, discharge summaries are then sent to the NFP along with brief contact information. At another facility, the case manager meets with the qualifying families in person and gives the NFP enrollment packet, which is later collected by this same case manager upon completion by the family. This enrollment packet is then sent to the NFP along with the infant’s discharge summary. The telephone number for the NFP is written on the discharge instructions for the BARRIERS TO NEONATAL FOLLOW-UP 10 family along with an approximate date of the first NFP appointment. In general, NICU professionals felt that having a specific contact from the NFP and the case manager with families close to discharge, multiple disciplines speaking to the parents regarding the importance of the

NFP, and the sending of discharge summaries to the NFP were helpful to the referral process. In contrast, the professionals felt that lack of confirmation from the NFP regarding receipt of the referral and lack of communication to the NICU regarding the date of first appointment were deterrents to the referral process. Additionally, professionals felt that at on occasion the NFP information was given to families at a time when they were overwhelmed with complex medical issues and not so concerned with future developmental issues. Professionals also expressed that families may also be feeling overwhelmed with transportation, childcare, and other needs that deter their focus from preparation for NFP participation. In general, the NICU professionals felt that the introductory letter provided by the NFP was adequate, but recommended NFP informational brochures that could be placed in the NICU waiting rooms and a website that professionals could refer families to would be valuable. They also felt that it would be beneficial for presentations from the NFP to the NICU staff, community physicians and also with NICU families on a routine basis.

Family Focus Group Qualitative Findings

The qualitative data gleaned from the focus groups conducted with NFP families resulted in some identified trends. Most participants were unsure of all services the NFP provides to families, and only knew of the services their children have experienced thus far in the program.

Participants were also unsure of funding sources for the NFP, with two families stating their child’s appointments were billed to their insurance company, but with no costs differences billed to them. All participants were aware the NICU team from their child’s hospital referred their BARRIERS TO NEONATAL FOLLOW-UP 11 family to the NFP during the time their child was in the hospital. The NICU team they spoke of included neonatologists, nurses, social workers, specialty therapists, and discharge planners. The difficulties surrounding the referral process were commonly noted as the lack of knowledge regarding their child’s first appointment with the NFP, which is months after their child is home from the hospital. Most of the materials/handouts about the NFP were not received and/or remembered by the families, besides the appointment reminders sent after their first visit to the clinic. Half of the families noted to receive an appointment summary in the mail 2-4 weeks after their child’s visit to NFP.

There were three common answers regarding the barriers of attending the clinic. The extended wait time during a NFP visit was mentioned by all participants as a challenge. With some families expressing their concern about their children becoming tired and hungry, resulting in low performance, as the appointment gets further in the day. Another common barrier was the inconsistent specialties seen from one visit to the next. Parents felt there was a communication breakdown between specialties in their child’s treatment plan. Finally, families felt the communication at the end of clinic and the weeks after could be improved. Some families were unaware of the end of the visit, how their child performed during the visit, and when their next appointment would be scheduled.

Families felt a shorter visit time or a rest/feeding time during their child’s visit could be a solution to the wait time barrier. Most families also mentioned having their child see performance-based specialties at the beginning of the visit to ensure they will be able to perform at their best ability. Families also noted possible time slots or a check off sheet so they are aware which specialty will be next during their visit. There was an overwhelming appreciation for the

NFP from every participant, regardless of the barriers in attending the clinic. The multiple BARRIERS TO NEONATAL FOLLOW-UP 12 specialties in clinic and the peace of mind felt by parents knowing their child’s development is being followed were the two most common answers to the benefits of attending clinic.

Feedback

An important aim of the current study was to obtain additional information regarding the process of NFP referral and clinic attendance and then provide appropriate feedback to the NFP referral and treatment team. Significant and recurrent themes from the focus group data, as well as specific recommendations made by focus group participants, were summarized and are included in Appendix D.

Discussion

In this research project, quantitative data was analyzed in order to observe the current attendance trends of referred infants to the NFP in Utah and compare the data to the number of referrals from various NICU facilities. In addition, focus groups were conducted with professionals to obtain their baseline knowledge of what the NFP offers and to identify potential barriers to participation in the program. Focus groups with the families were held to discover perceptions of the value of the program and to identify possible attendance barriers to the NFP in

Utah. Our findings suggest while the NFP programs are thought to be beneficial, there are improvements that could be acted upon.

The families that participated in the focus groups articulated their appreciation for the program in providing an extra hand in observing their child’s development and providing them with professional recommendations. From a program standpoint, the families did not receive materials while in the hospital and most didn’t receive appointment letters and were not aware of their first appointment date. They were concerned however, with the long wait time between specialists, and a perceived lack of communication between the NFP professionals, themselves, BARRIERS TO NEONATAL FOLLOW-UP 13 and the other practicing professionals involved in their child’s case. From a family standpoint, they found challenges and barriers to attending the program to be work schedules and childcare for siblings. Though one of the restrictions of this study included not having a representative sample of families that have been referred but have not attended, this group of individuals was important to the outcomes of this study to provide a starting point of improvement for the NFP in

The professionals that participated in the focus groups noted the benefit of the NFP to families with NICU graduates including a heightened awareness and timely referrals resulting in improved developmental outcomes. They were able to give some insight as to the possibility of families not following through with a referral to the NFP, which is consistent with the literature.

From their experience, distance to the clinic is a factor and families are very overwhelmed and inundated with information as they exit the NICU. As well, parents may be in denial regarding developmental risk and may lack knowledge in the services provided by the NFP. Overall the professionals felt the NFP could serve their consumers better by increasing advertisement and education for the NICU staff, community physicians, and NICU families, improve the communication between the NFP and the NICUs and to have a consistent contact for families in the NICU and NFP.

Limitations of the Study

Despite the above findings, the current study demonstrated several limitations. First, the small number of focus groups and the small sample size was a limitation to this study. During the conceptualization of this research project, investigators hoped to conduct multiple focus groups and obtain qualitative data from six to eight participants at each group. Due to recruitment and time restrictions, the current study consisted of a smaller sample size and BARRIERS TO NEONATAL FOLLOW-UP 14 conducted two focus groups with both families and professionals. A second limitation of the study was that all focus groups and recruitment materials were conducted in English. This could have prevented families who spoke other languages as a primary language to engage fully in the study and thus be unable to provide feedback on neonatal follow up. This might have led to a bias in the collected qualitative data and family feedback, as a potential barrier could be language related. A final limitation of the study is that the current participant sample included only families who successfully attended the NFP and therefore did not collect qualitative data from families who did not attend. As a result, the current sample is biased toward families who did participate in the NFP. This means that qualitative data obtained from focus groups does not reflect the perspective of families who did not attend and therefore we cannot determine what barriers or challenges might have been present for those families.

Future Directions Related to Project

Future studies should gather larger data samples from perspective families who currently never attended NFP and to also enroll families who stopped attending prior to their completion of the program including all nationalities. As well, it would be beneficial to gather data from community pediatricians regarding their knowledge base of the NFP including their recommended interventions and strategies to improve the follow-up rate of qualifying infants and their families. BARRIERS TO NEONATAL FOLLOW-UP 15

References

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Neonatal Follow-up Programs: Is Attendance a Problem? Journal of Perinatal &

Neonatal Nursing, 26(1), 90-98.

Butz, A., Funkhouser, A., Caleb, L., Rosenstein, B. (1993). Infant Health Care

Utilization Predicted by Pattern of Prenatal Care. Pediatrics, 92, 50-54.

Byers, P. Y., Wilcox, J.R. (1991). Focus Groups: A Qualitative Opportunity for

Researchers. The Journal of Business Communication, 28(1), 63-78.

Hussey-Gardner BT, Wachtel RC, Viscardi RM. (1998). Parent perceptions of an NICU

follow-up clinic. Neonatal Network, 17(1), 33-39.

Illinois Chapter of the American Academy of Pediatrics (2009). Findings from a survey of

Illinois level III NICU developmental follow-up programs. American Academy of

Pediatrics: Illinois Chapter. Byck, G.R.

Kuppala, V. S., Tabangin, M., Haberman, B., Steichen, J., Yolton, K. (2012). Current state of

high-risk infant follow-up care in the United States: results of a National survey of

academic follow-up programs. Journal of Perinatology, 32(4), 293-98.

Robinson, N. (1999). The use of Focus Group Methodology – With Selected Examples from

Sexual Health Research. Journal of Advanced Nursing, 29(4), 905-913.

Vohr, B. R., Wright, L. L., Dusick, A. M., Mele, L., Verter, J., Steichen, J. J., et al. (2000).

Neurodevelopmental and Functional Outcomes of Extremely Low Birth Weight Infants

in the National Institute of Child Health and Human Development Neonatal Research

Network, 1993-1994. Pediatrics, 105, 1216-122. BARRIERS TO NEONATAL FOLLOW-UP 16

Appendix A

Neonatal Follow-up Attendance Rates Referring Neonatal Number of Children Number of Referred No Show Rate (in Intensive Care Unit Referred to the Children who Never percentage) for this (NICU) Neonatal Follow up Attended the Referring NICU Program in 2011 Neonatal Follow up Program Davis Hospital and Medical Center 7 0 0% Dixie Regional Medical Center 2 0 0% Intermountain Medical Center 53 12 23% McKay-Dee Hospital 30 10 33% Ogden Regional Medical Center 6 1 17% Primary Children’s Medical Center 58 16 28% St. Marks Hospital 22 3 14% Timpanogos Regional Hospital 2 0 0% University of Utah Medical Center 65 11 17% Utah Valley Regional Medical Center 58 15 26% BARRIERS TO NEONATAL FOLLOW-UP 17

Appendix B

Family Focus Group Data

Questions Common Themes Who referred you to the NFP? NICU team referred families during hospital stay Were there any difficulties with your referral Families were not aware of the first experience in the NFP? Or first visit to the NFP? appointment date Did you receive materials/handouts regarding the NFP No handouts given in hospital and would you consider them helpful or informative? Most didn’t receive appointment letters Half did not receive the patients summary after the visit What was the most important reason or benefit for Multiple disciplines available to your family to attend the NFP? evaluate child's development Answers any questions and obtain education regarding their child's progress Multiple Specialists are present during visit What Challenges or barriers did you face attending the Long wait time between specialists NFP & What are the disadvantages to the patients and Less likely to perform later in the visit families? as the child becomes tired Lack of communication between specialists during visit Work schedule Childcare for siblings What are possible solutions to these challenges or Nap & feed between specialists barriers/disadvantages you face? Provide logistic information before the visit (i.e. snacks) Schedule performance based specialists earlier in the visit Provide a check off sheet with specialist's they will see during the visit Show patients progression from previous visit What are the services the NFP provides? Not sure of all services; just the services provided to their child Who funds the NFP and are you aware of any costs to Unsure of who funds the program the families? Insurance is billed BARRIERS TO NEONATAL FOLLOW-UP 18

Appendix C

Professional Focus Group Data

What services does the NFP provide? Unsure of all services provided Age visits for children Timeline for seeing Specialist What are the advantages to the patients and families? See many specialists at one center Early identification of problems & referrals to needed services for better outcomes Raises family awareness & support What are the disadvantages to the patients and families? Long time frame If families are in denial may not recognize the benefit or learn anything new Not seen soon enough and often enough the first year What are the referral criteria for Utah’s NFP? Aware of criteria with birth weight, HIE, ECMO, except for gestational age Describe the process/ procedures you currently utilize to refer families to the Different methods between facilities. NFP? 1. Case manager discusses weekly with NFP representative which infant's qualify. Sometimes family receives a letter while in hospital but can be left at bed space, some are mailed out. Discharge summaries are sent to program and on discharge information to families they are given NFP contact information and brief information. 2. Case Manager meets with families face to face and gives them NFP packet (demographics and financial), gets packet back from families. Sends packet, d/c summary, and recent developmental eval. Also writes on d/c sheet phone number and approx. 1st visit. What about the current referral procedures promote successful referral and follow Different methods between facilities. up to the NFP? 1. Weekly meeting with NFP representative, D/C summary in mailbox. 2. Face to face meeting with families regarding the program and benefits, sends completed paperwork, D/C summary to program. All disciplines talk to the family about the program. What about the current referral procedures detract from successful referral and No confirmation from NFP regarding referral or date of first visit follow up to the NFP? Parents overwhelmed with medical issues while in hospital versus future developmental issues. No confirmation of face to face with parents Transportation Childcare for siblings Costs Denial Who funds the NFP and what is the cost to the families? Government/state, assuming no costs. Do you know where the NFP clinics are located? SLC, Provo, Ogden, but also thought St. George. Would you consider the materials/handouts of information regarding the NFP Introductory letter is adequate. accessible and informative? Need handouts to give to families and also place in waiting room, and/or refer to a website. What solutions might eliminate or minimize the barriers to NFP attendance? Better communication between facilities regarding receiving referral, first appointment date and show rate. Presentation to families regarding services, ages, including start and stop dates, benefits, and differences between EI. Presentation also to staff including outcomes. Face to face meetings with parents close to discharge and to also confirm contact information, and phone call prior to first appointment. Pediatrician support/buy in Share follow-up note at facility Additional Logan clinic Submission of paperwork online Visits more convenient for families versus staff Check-off sheet during visit. BARRIERS TO NEONATAL FOLLOW-UP 19

Appendix D

NFP Recommendations

1. Education to Families a. Create informational material, i.e. brochure or poster for families to be placed in the NICUs and NFP waiting rooms or admission packet providing general information such as the criteria, the developmental role, the provided interdisciplinary services and the schedule of providers, visit ages, what to expect during the visit, benefits of program, differences between programs such as early intervention, and costs. b. Provide a brief presentation to families at the NICU referral centers, i.e. during Primary Children’s parent hour. c. Provide a website for families and professionals with the NFP information, include a process for families to submit paperwork online and establish a way for referral centers to know when it was completed.

2. Education to NICU Staff a. Provide a presentation to NICU staff at each referral center including the NFP criteria, the developmental role, the provided interdisciplinary services and the schedule of providers, visit ages, what to expect during the visit, benefits of program, differences between programs such as early intervention, include show rate percentages, outcomes and etc.

3. Communication between facilities a. Design a specific and consistent referral process across facilities to improve communication between the NFP and NICU facilities regarding receiving referral, and date of first clinic visit.

4. NFP and NICU Contact for Families a. Provide a consistent contact at the program for families and with a designated hospital provider perform a face-to-face meeting with parents close to discharge, to provide information regarding the program, confirm parent’s contact information, and provide a phone call prior to first appointment from the same NFP contact. Inform the designated hospital provider and primary care physician to make a follow up phone call to the family if they do not show for that first appointment.

5. Additional Clinics a. Consider the feasibility of adding additional clinics such as in Logan. BARRIERS TO NEONATAL FOLLOW-UP 20

Author Note

The authors of this paper wish to acknowledge the faculty mentors for this project: Sarah Winter and Vicki Simonsmeier; the family consumer consultant: Christine Evans; and the core faculty members: Paula Peterson, JoLynn Webster, Gretchen Peacock, Heidi Lane, and Terry Pavia.