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

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 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.

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 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.

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 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.

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 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 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.