Neonatal follow-up (NFU) programs provide health services for infants at high risk for developmental problems after they transition home from the neonatal intensive care unit (NICU). With the advent of technological advances, a greater proportion of infants who required NICU care are surviving, but with increased risk for morbidity and poorer developmental outcomes.1 Attendance at NFU is crucial for parents and infants to gain access to the expertise required for reassurance and support, timely diagnosis, referral to needed services, and assistance with the coordination of their care, which is sometimes complex. Despite the vital role of NFU,2 up to 30% of parents do not attend these programs with their infants.3–5 At-risk infants who do not attend NFU programs are reported to have higher rates of motor and neurosensory disabilities,6–10 lower cognitive skills,4,6,7,9,10 and less access to required services (eg, early intervention)4 compared with similar infants who attend. Delayed care translates to greater costs for children, families, and health service systems.11 When parents and infants do not attend NFU, long-term developmental outcomes are underreported,5–7,9,10,12 and the outcomes data reported by NFU programs are nonrepresentative and biased. Identifying current NFU attendance patterns and the time points at which families withdraw from NFU programs is the first step in improving attendance and, ultimately, child outcomes.
Subgroups of infants who transition from the NICU to NFU programs are (a) very preterm infants (ie, born ≤28 weeks' gestational age and/or <1500-g birth weight [BW]) and (b) term/near-term infants, who required complex new technologies, and medical and/or surgical interventions.13,14 These infants are at the greatest risk for motor, language delay, and cognitive and learning challenges that may require long-term developmental and education services.15,16 Neonatal follow-up programs provide (a) expert developmental assessment, (b) early detection and diagnosis of developmental delays and referral to therapeutic and rehabilitation programs, (c) education and psychosocial support to parents about their infant's development and how to optimize it, (d) reassurance about what is going well, and (e) ongoing audit of NICU interventions and the summative outcomes of children after NICU hospitalization through to 3 years of age.2,13,14
In Canada, 23 tertiary-level NFU programs are partners in the Canadian Neonatal Follow-Up Network, a national database of parent characteristics and infant outcomes from pregnancy through to when the child is 3 years of age.14 Canadian NFU programs are publically funded, in a manner similar to European and Australian programs. Neonatal follow-up programs in the United States are typically not publically funded, but parents are not expected to pay as coverage is provided by research funds,5 incentives,5,11 or private health insurance. Despite these funding arrangements, nonattendance at NFU programs continues to be a significant problem within and beyond Canada and does not appear to be related to direct financial costs to families.
Published attendance rates at NFU programs are outdated by 10 to 20 years.2–7,9–11 An overview of NFU attendance rates and studies is detailed in Table 1. The reported nonattendance rates in Canada range from 10% to 30%2 and in Europe and Australia from 11% to 30%.6,7,10 In the United States, reported nonattendance rates were almost double at 50%.4,5 There have been no recent local, national, or international published studies that addressed rates or patterns of attendance at NFU programs. Neonatal follow-up programs spend considerable resources to communicate with parents about attendance at follow-up appointments. Attendance is key to optimize infant outcomes in the first 3 years of life, a time when appropriate early intervention has a greater influence on brain development and subsequent learning, behavior, and long-term health outcomes than at any time during the life cycle.17,18
The methods applied to define and categorize attendance and nonattendance varied among studies, making comparisons between studies challenging. Terminology of outcome variables such as partial attenders, nonresponders, difficult to follow, or hard to see were either not defined or reported differently in the literature. For research purposes, there were 2 distinct approaches used to define and categorize attendance. The first approach, as implemented for the present study, nonattendance as attending either no appointment or 1 appointment, which is different from attendance of those attending all or the majority of appointments.3,4 The second approach categorized attendance versus nonattendance on the basis of the difficulty experienced in scheduling and rescheduling appointments (eg, failure to keep >2 scheduled appointments was considered nonattendance).7
The aims of the study were to assess current patterns of NFU attendance and explore time points when mothers and infants withdrew from NFU programs during the infant's first year of life. The research was conducted as part of a large prospective, 2-phase, descriptive, multisite cohort study that investigated the maternal/infant factors of attendance at NFU programs.19
The study was conducted in 3 Canadian tertiary-level NICUs and their 2 affiliated, regional NFU programs. These units and programs were located in the most population-dense area of the province of Ontario (with a population of 13 million), where more than 80% of all births occur. Infants who required NICU care and who are considered at high risk for developmental problems are routinely referred to the 2-affiliated outpatient NFU programs located at academic pediatric hospitals. Neonatal intensive care unit personnel (discharge planning nurse and staff neonatologist) inform parents about the NFU program and their infant's need for developmental follow-up, respectively. Appointments are scheduled and appointment cards are provided to parents before their infant's discharge from the NICU. Before the first appointment, NFU program personnel provide a personalized letter, information about the program, and telephone reminder, and, for subsequent appointments, all families receive appointment cards and telephone reminders.
The 2 NFU programs each annually received approximately 350 infant referrals from their respective NICUs. All NFU appointments were scheduled using corrected age (CA) versus chronological age. Variation existed in scheduling of follow-up appointments between the 2 research sites. At site A, infants were scheduled at 4, 8, 12, 20, and 36 months' CA and at site B at 3, 6, 12, 24, and 36 months' CA. Although variation in site characteristics was a threat to internal validity, this situation is representative of NFU programs2,14 across Canada and, thus, strengthened the ecological validity of the study findings.
Mothers and infants were consecutively recruited from the NICUs during the week before their infant's discharge. All mothers whose infants met at least 1 of the preestablished diagnostic referral criteria for NFU programs were eligible for participation, including (a) preterm birth (BW ≤ 1500 g or ≤28 weeks) or term/near-term birth, (b) small for gestational age, (c) multiple births, and/or (d) complex medical/surgical diagnoses. Neonatal follow-up referral criteria are long-standing and were preestablished by neonatology and developmental experts at the study sites and consistent with International Follow-Up Care Working Group recommendations.2,13,14 Potential study participants were excluded if they were unable to speak and read English and thus unable to participate in the informed consent process.
Research ethics board approval was provided by the affiliated university and participating hospitals. Once the medical team established that an infant met the eligibility criteria for the NFU program, a member of the staff, who was not involved in the clinical care of the infant, approached the mothers and invited participation. If mothers were interested, a member of the research team conducted the informed written consent process.
Standard infant demographic and clinical characteristics such as infant gestational age, BW, sex, single/multiple birth, severity of illness, and diagnosis were obtained from the NICU medical record. The severity of infant's illness was determined by the Score for Neonatal Acute Physiology–II, a composite measure of newborn illness severity measured at NICU admission.20,21 Mothers completed a questionnaire that included measures of demographic characteristics and social context such as marital status, first-time parent, income adequacy, employment, maternity leave, education, ethnicity, language, country of birth, and maternal age.
Attendance at NFU programs was tracked at each of the 3 scheduled NFU appointments and was measured as a binary variable (“yes” or “no”). Both NFU sites systematically recorded attendance in existing databases. There was no interference by study personnel with the process for rescheduling appointments or any direct contact with mothers after NICU discharge. Strategies were used to minimize potential threats to internal validity as inquiring about attendance was deemed to be a potential intervention to promote attendance. Strategies included providing NFU and research personnel with limited information on the study purpose and not involving coinvestigators (some of whom practice in the NFU programs) in data collection. Investigators did not directly inquire about mothers' reasons for not attending or canceling NFU appointments to minimize intervention bias of the observational study methods, nor did the NFU program track reasons for nonattendance. If mothers provided reasons, the information was documented and collected from the NFU database.
Sample size and data analysis
Sample size estimation was based on recruitment feasibility. An estimated total sample of 350 participants was feasible on the basis of previous research in these sites with a 25% refusal rate and a 25% rate of nonavailability.
Accuracy of data was verified (<2% missing data, <1% data entry error). All data were double checked with raw data forms, the database had numeric limit settings, and range checks were conducted. Analyses were conducted using the Statistical Package for Social Sciences–Version 17 (SPSS, Inc, Chicago, Illinois). Descriptive analyses were conducted using frequency distributions and proportions for categorical data, and mean or median, standard deviations, and standard error for continuous data. All infants were included; mothers of multiple births were included once. Only 1 infant of multiples was included for attendance analysis (ie, the lesser BW infant was included).
Characteristics of participants
A total of 357 mothers and 400 infants were recruited and observed for 12 months' CA between November 2006 and July 2009. There were 318 singleton infants and 82 multiple births (ie, twins and triplets) for a total of 400 infants for 357 mothers.
Of the 679 eligible mothers, 53 (7.8%) were not eligible to participate, as they were unable to speak and read English, and 76 (11.2%) were not invited to participate because of unavailability of the mother or research team. The refusal rate was 30%, and 2% were lost to follow-up after consent (eg, infant mortality). There were no differences in recruitment or refusal rate based on site. The demographic characteristics of infant participants did not differ from infants who were eligible but did not participate in the study. Infant and maternal characteristics are shown in Tables 2 and 3. There were no statistically significant differences in attendance and nonattendance at NFU based on infant characteristics. On the basis of maternal characteristics, only mothers who were single (1-parent family) were statistically significantly less likely to attend NFU with their infant.
Study participants had the opportunity to attend 3 NFU appointments through the first 12 months' CA (ie, appointment 1 at 3–4 months, appointment 2 at 6–8 months' CA, and appointment 3 at 12 months). The percentage of those who did not attend NFU programs steadily increased over time from 16% at the first appointment to 26% by the third appointment at 12 months' CA (see Figure 1). The most frequent point of withdrawal from NFU occurred between NICU discharge and the first scheduled appointment.
There were 9% of mothers and infants who never attended NFU, 10% who attended only 1 appointment, 16% who attended 2 of the 3 appointments, and 65% who attended all appointments. Overall, when attendance over the 12-month period was summed and dichotomized,3,4 the majority attended 2 or 3 scheduled appointments (81.5%) compared with 18.5% who did not attend, or minimally attended (ie, attended only 1 appointment).
When only 1 NFU appointment was attended, early withdrawal was the most common pattern of attendance. Among those who attended only once, 78% attended the first appointment at 3 to 4 months' CA and then failed to attend thereafter. In contrast, only 8% did not attend until the third appointment at 12 months' CA (Table 4). Similarly, when only 2 NFU appointments were attended, the majority dropped out after attending the first 2 scheduled appointments. Among those who attended twice, half attended the first 2 appointments and subsequently withdrew; one-third attended only the last 2 appointments and 17% attended the first appointment, withdrew, and returned to attend the third appointment (Table 5).
The majority of mothers (up to 62%) did not provide reasons for not attending NFU. When they did offer reasons, the primary reasons were the following: preference to be followed closer to home or by a different healthcare provider (eg, pediatrician), illness in the family, and/or the family had moved.
This is the first study in 20 years to report on attendance rates in Canadian NFU programs and the only study to explore time points when mothers and infants are at greatest risk for withdrawal from NFU across a 12-month time period. Attendance rates at NFU in the present study were slightly higher than those in some studies, which ranged from 62% to 75%,3,6,9,11,12,22 as outlined in Table 1. However, attendance rates were higher in the current study than initially estimated by the researchers (eg, 70%), which might have been due to higher maternal education and income in this sample as compared with previous studies4–6,9,11,12 and nonresponse bias (ie, mothers who declined to participate might have differed from mothers who participated). Alternatively, in the process of enrolling mothers into the study, researchers may inadvertently have encouraged them to participate, given the positive experience and/or direct contact with the research team members. Some researchers have reported higher attendance rates than those reported in the present study (eg, ranging from 89% to 93%).7,23 However, in these studies, tremendous efforts and resources (ie, interventions) were expended to increase attendance rather than to simply observe and describe naturally occurring attendance. For example, NFU care was provided in a variety of locations (eg, hospital, clinic, or family's home)7 and additional programs (eg, early intervention) and incentives (eg, transportation, remuneration for completed assessments, photos of the infant, T-shirts, books, toys, and birthday, holiday, and mother's day cards)23 were provided to encourage attendance in those programs. Conversely, other researchers have reported lower attendance rates (ie, ranging from 49% to 55%).4,5,24 Lower attendance rates were likely due to sample characteristics (eg, inner city, mothers of low socioeconomic status)5 and study methods that differed from those used in the present study (eg, not accounting for all potential participants),5 longer duration of follow-up,4,25 and retrospective versus prospective research designs.4,5
In the present study, attendance decreased over time from 84% between the NICU to the first appointment, and an additional 10% drop-off from the first appointment to the 12-month appointment. This pattern was similar to that observed in other studies.3,11,12,22 The percentage decrease in attendance over time was lower (6%) in 2 other studies,11,22 but unlike the present study, specific interventions (eg, paid transportation) were provided to increase attendance.
The time point that mothers and their infants were most likely to withdraw from NFU (ie, did not attend) was between NICU discharge and the first scheduled appointment in the present study. Other researchers have reported wide variation in nonattendance rates (ranging from 9% to 72%) for this same time point. Differences in nonattendance rates may be because questionnaires were mailed to assess developmental follow-up rather than direct clinic assessment (72%)12; incentives were used to increase attendance (30%)11,22; and retrospective study methods were used (9%).3,26 Mothers might have withdrawn at this time point to distance themselves from their NICU experiences,27,28 or because of reluctance to return to the hospital,29 fear of further psychological distress, or potential “bad news” with respect to their infants.27
The percentage of mothers and infants who withdrew at the second and third scheduled appointments was lower than that during the initial period for the first scheduled appointment. Other researchers have not specifically addressed withdrawal at each subsequent scheduled appointment; thus, no comparisons are possible. One could speculate that mothers, who withdrew after an NFU appointment, were more likely influenced by the process of care (eg, quality of care, expectations or needs not met, communication of the caregiver, bad news provided). By 12 months, some mothers are returning to work, which can influence their ability to attend NFU.
We have limited insight into the reasons for nonattendance at NFU in the present study as two-thirds of all maternal participants did not voluntarily provide reasons and only 1 of the 2 NFU sites tracked reasons for nonattendance, which limited available data. When reasons were provided, they were limited (eg, preferred to be followed elsewhere, illness in the family, and/or the family had moved). Our findings were similar to those of previous studies in which reasons were typically not provided6,7,11 or families had moved away.7,30 Yet in these studies, as with the current research, investigators did not directly inquire for reasons to minimize intervention bias of the observational study methods. Not inquiring for reasons minimized intervention bias and was a strength in the current study. However, this observational approach limited our ability to gain in-depth information as to mothers' reasons for not attending. In the current study, mothers did not provide reasons such as not interested, not necessary, or too busy to attend NFU as other researchers have reported.6,11 Nor did study participants provide fictitious contact information as others have reported.5,30 Mothers not providing these reasons for nonattendance may be accounted for by the study method (ie, neither researcher nor clinic staff directly inquiring for a reason), and potential reluctance on the mothers' behalf to express personal reasons to healthcare professionals, who may ultimately participate in the care of their infants. It is important to gain an in-depth understanding of mothers' reasons for not attending NFU to develop appropriate interventions aimed at increasing attendance.
Some researchers have hypothesized, although they have not established, that parents do not attend NFU because of the reluctance of having their child assessed, especially when a disability is suspected, diagnosed, or highlighted.7,8,10,22 Others have hypothesized that reasons for nonattendance are associated with psychological factors (eg, increased depression, parenting, and decision-making styles)31 or personality traits.12 Du Mazaubrun et al30 reported that reasons are complex and may include reluctance (especially with disability or previous adverse experience), psychological factors, competing priorities, and multiple socioeconomic difficulties. Holditch-Davis and colleagues27 reported that mothers of premature infants experienced symptoms related to posttraumatic stress disorder (eg, reexperiencing, avoidance). In turn, mothers who experienced posttraumatic stress might have avoided taking their child to healthcare providers to protect themselves from reminders of the NICU.28,29 In addition, subsequent developmental assessments or problems that might have been addressed at NFU could have been retraumatizing for the mother, resulting in inconsistent attendance or nonattendance at NFU.27
Implications for nursing practice and future research
The most frequent point of NFU program withdrawal occurred between the NICU discharge and the first scheduled appointment. Therefore, nurses need to address this gap and strategies should be implemented earlier (eg, during the infant's NICU hospitalization) to transition mothers and infants to the NFU program. Strategies could include increased and more effective contact with mothers identified as being at risk of withdrawing from NFU (eg, single mothers) based on the mother's specific individualized needs (eg, information, social or financial support, transportation, consultation, and/or education needs related to the NFU program and infant development). Neonatal intensive care unit nurses have a continual presence in caring for ill infants and their mothers and have the greatest opportunities to identify needs and seek supports for NICU mothers in their transition to the NFU program. In turn, NFU nurses have the responsibility to collaborate with and assist NICU nurses in guiding the transition of mothers and infants.
The second most frequent point of NFU dropout was after the first scheduled appointment. Therefore, gaining a better understanding of the reasons for withdrawal from NFU, and any areas of dissatisfaction with the quality of NFU care or the messages conveyed (eg, negative news) at the first NFU appointment, is essential. In this way, feedback can be incorporated into subsequent and overall NFU service provision to meet the needs of families more effectively. Constantine et al23 attributed improved NFU attendance to a variety of strategies, including providing transportation to NFU, placing 2 telephone calls between NFU appointments, home visiting for families with no telephone, remuneration for attending, and aggressive tracking of mothers who had moved. Consideration also should be given to social media and new technology-based strategies such as text-message appointment reminders32 and open-access scheduling,33 which were reported as efficacious at increasing attendance at outpatient clinics in adult and pediatric cohorts.
For mothers who travel long distances to NFU, alternate forms of providing health services should be investigated. While Tin et al7 used home visits, creative options such as satellite clinics, traveling clinics, collaboration with community partners, and using telecommunication technologies (eg, Internet-based with video capability) require investigation in clinical practice and research. Callanan et al (2001)6 also recommended using progress reports such as infant development updates by telephone or questionnaire in addition to scheduled appointments as a successful method of increasing engagement with the NFU program. Given the current strained economic environment for health services, a feasibility and cost-benefit analysis are required before implementing any of these strategies.
The next research step, now that current attendance rates have been established, would be to explore with mothers, healthcare professionals, and within particular contexts the rationale for these patterns using qualitative inquiry methods. Future research should address the interrelationship between greater NFU withdrawal after NICU discharge and mothers' experiences in transition from the NICU to home. The first month at home is known to be highly stressful, occurs before the first NFU appointment at 4 months, and may potentially affect attendance.
The present findings could only be generalized to populations with similar characteristics (ie, higher education and income levels) and the benefit of universal healthcare coverage as in Canada. Further research is required to address maternal experiences and reasons for attendance and nonattendance at NFU, the relationship between attendance and infant disability, and the quality of NFU programs, and to develop appropriate interventions targeted at improving attendance and to evaluate the effectiveness and sustainability of these interventions. It is essential to undertake this research, implement clinical practice changes, knowledge translation, and policy recommendations to improve attendance at NFU and relevant pediatric services. These actions could increase access to NFU and ultimately improve health outcomes for at-risk infants and families.
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Keywords:© 2012 Lippincott Williams & Wilkins, Inc.
access; attendance; neonatal follow-up; transition