Infants born prematurely are at increased risk of developmental delay and motor disabilities.1 Although the causes of developmental delay are multifactorial, infant development is strongly associated with family environment and parent–infant interaction.2,3 Unfortunately, many mothers whose infants are born prematurely develop disturbed patterns of early interactions with their infants.4–6 Altered parent–infant interactions may be further hampered by parental uncertainty that is frequently reported by parents of infants born preterm regarding how to care for and promote the development of their infant.7,8 Methods to optimize parent–infant interactions and support motor development are needed.
The effect of a variety of developmental, educational, and/or intervention programs on parent–infant interactions, parental stress,9–12 and infant development12–15 has been investigated with varied results. We defined parent education as the process by which parents are provided information that is applicable to infant care. Interventions are programs in which specific activities are completed with the infant. These can be combined together to form a parent education intervention in which the parent is taught specific ways they can provide intervention to their infant as part of caregiving or in addition to caregiving.
Parent–infant interactions and subsequent infant development have been reported to improve when infants are cared for using a developmental approach such as the Newborn Individual Developmental Care and Assessment Program (NIDCAP), which includes parent education on neonatal intensive care unit (NICU) environmental adaptation and parent infant interactions.11 Olafsen et al13 taught parents how to interpret infant behavioral cues and to engage their infant in age appropriate interactions while in the NICU. Families that participated in the educational program exhibited improved parent–infant interactions and infant joint attention at 12 months of age, adjusted for prematurity. Parent education combined with a professionally administered intervention program during and after NICU hospitalization was also found to improve parent–infant interactions and infant development.14,15 Similarly, individualized parent education intervention sessions during monthly home visits for 4 months after NICU discharge were effective at supporting motor development of infants born preterm.16 However, other studies have failed to show an effect of parent education. Investigators in a recent randomized clinical trial reported no difference in neurodevelopmental outcomes of infants born preterm whose parent(s) participated in an educational program in the NICU compared with those whose parent(s) did not.17 Authors of another recent study found that, after an educational program, mothers reported increased knowledge of infant behavioral cues but were no more confident in taking care of or playing with their infants.18 The variability in outcomes of these studies may be due to the heterogeneity of the parent populations, the outcome measures, and parent education strategies. Of note, in only one past study was an intervention and outcome assessment included specifically focused on motor development. The interviews and assessment were conducted after NICU discharge.16
Healthcare and early interventions (EI) systems are responsible for educating the parents of infants born preterm and supporting the development of this population. Limited financial resources for physical therapy and increasing evidence for the efficacy of parent education in other healthcare domains supports the use of parent education to enhance motor development of infants born preterm. Physical therapists practicing in the NICU have a unique opportunity to educate parents on their infant’s current and anticipated motor development. In addition, therapists working in the NICU have an obligation to educate parents on play activities, strategies to maximize their infant’s development, and refer the infants who are at high risk to EI services. The Practice Guidelines for the Physical Therapist in the NICU 19 recommends that planning should be completed in collaboration with the family and include a developmentally supportive home environment. However, it is unclear how physical therapists can be most effective in teaching parents about their infant’s motor development and expectations for development.
Parental preferences for educational methods should be considered in choosing and evaluating infant motor development education programs, but limited information is currently available.20 In a survey of 23 parents whose children received EI services, Scales et al20 found the majority of parents reported that parent instruction on ways to support motor development would be more beneficial to their child than would direct physical therapy services. Nursing literature provides additional insight into parent preferences for education in other content areas. In a combined qualitative and quantitative study by Broedsgaard and Wagner,7 parents identified group discussions and individual consultations as the most helpful ways to prepare to care for their infant born preterm. Additionally, Melnyk et al12 demonstrated improved parent–infant interaction after parents were empowered to help care in the NICU for their infant born preterm. Each of these studies suggest that parents prefer to learn about their infant’s development and participate in the infant’s care rather than solely relying on skilled professionals to provide all health and developmental services. Further research is needed to document preferred methods for and the efficacy of parent education on infant motor development.
The purpose of this pilot study was to determine parents’ preferred method of receiving education to enhance motor development of their infants born preterm.
This qualitative study was conducted through a pair of focus groups. The purpose of the first focus group was for parents to evaluate 3 different formats of education regarding methods to support motor development of their infant who was born preterm. This qualitative data was then used to develop a parent education intervention. The purpose of the second focus group was to assess the clarity of the parent education intervention.
Virginia Commonwealth University Health System (VCUHS) is a regional medical center with a level III NICU. In 2007, 317 infants were hospitalized in the VCUHS NICU with mean gestational age and birth weight of 33.5 weeks of gestation (SD 4.5 weeks) and 2176 g (SD 1022 g), respectively. Fifty-six percent of the infants were born to African American women. The mean maternal age was 26.3 years (SD 6.4 years). The VCU Institutional Review Board approved this study.
Parents of infants being cared for in the VCUHS NICU were recruited to participate in this study in a variety of ways. The research team held information sessions for the nursing staff introducing the study before beginning recruitment. Signs were placed in the parent areas, hand washing areas, and entrance to the NICU providing parents information on the study. The signs directed parents to alert their infant’s nurse if they were interested in participating. In addition, 10 days before each focus group the research team spoke to individual nurses regarding the focus group and approached visiting parents if the nurse reported the infant was born at less than 37 weeks of gestation, the parent was 18 year or older, and spoke English. Parents were provided with a flyer introducing the focus groups and a brief description. Parent who expressed interested in participating were given the option to provide a phone number for a reminder call. To enhance the parents’ willingness to share their impressions of the educational materials and their NICU experience, demographic information was not collected on the parents or their infants. Parents were made aware of this during the recruitment process. At the beginning of each focus group, a statement regarding the focus group’s purpose, confidentiality, and use of the data was read. Participants were informed that by remaining in the group their consent was implied. Each participant received 25 dollars for participating in the group as well as reimbursement for their travel to the focus group.
The participants in the first focus group included 9 parents of infants who were born preterm and hospitalized in the VCUHS NICU. At the time of the focus group, 2 infants had been discharged from the NICU whereas 7 infants remained hospitalized in the NICU. The participants in the second focus group included 4 parents whose infants were born prematurely and were hospitalized in the NICU at the time of the focus group; none had participated in the first focus group. Each focus group was audio taped and led by the first author. Notes were taken by an assistant and the audiotapes were reviewed by the first author who has experience in conducting focus groups. Themes from the discussions were recorded after each focus group. The audio tapes and notes were used to confirm those themes and record the frequency and examples of comments related to each theme. All records of the themes and quotes were recorded without any identifying information before the tapes were destroyed to ensure confidentiality.
During the first focus group, parents were presented with educational information in 3 formats, each reviewing the same information in varying depth. The first was a brochure that included information on adjusted ages; anticipated motor milestones in the first year of life; tips for playing; and activities to encourage motor development at home in supine, prone, and sitting positions as well as rolling. Parents were not provided with any additional description of the information included in the brochure. After reviewing the brochure, the parents were asked open-ended questions regarding the clarity of the information presented. The open-ended questions were developed by the research team before the focus groups; however, these were restated and reordered as needed to follow-up on comments made by parents during the focus groups. The second educational format was a lecture provided by the first author using PowerPoint. The lecture was 15 minutes in duration, reviewed the same concepts as the brochure, and was followed by a similar discussion prompted by open-ended questions. The final educational format was a 15-minute video of an infant assessment using selected items from the Test of Infant Motor Performance21 during which the therapist described what she was seeing, made recommendations about play activities, and reviewed expectations for motor development. While viewing the video, parents were asked to imagine that this was their infant’s motor assessment and that the educational information provided would be based on their infant’s performance during the assessment. After the video, the parents again were engaged in a discussion answering open-ended questions regarding the clarity of the information presented. Subsequent to viewing and discussing the 3 formats, the parents were asked to rank the educational formats in order of their preference and to describe the ideal combination of these formats. The results from this first focus group guided the development of the parent education intervention.
During the second focus group, parents received the parent education intervention that was developed as a combination of the 3 formats presented during the first focus group. The parent education intervention included parent observation of a motor assessment, therapist description of the infant’s abilities, and verbal and written recommendations on play activities and on calculating the infant’s adjusted age for prematurity. The motor assessment was demonstrated using a 12-minute video of an infant being assessed using selected items from the Test of Infant Motor Performance while the therapist described the assessment. The parents were asked to imagine that this was their infant’s assessment and the parent was observing the assessment in the NICU. After the videotaped assessment, the group leader reviewed the findings of the simulated assessment with the parents and provided a copy of the brochure used in the first focus group. The first author reviewed and elaborated on the information in the brochure with the parents. Before and after the parent education intervention, the focus group participants answered 11 multiple choice questions (Appendix, available online at www.pedpt.com) relating to calculating adjusted ages, expectations for motor development, and play activities and strategies. In addition, the participants were asked a series of open-ended questions about their understanding of the information that was provided in the parent education intervention, and were asked to provide examples of how they plan to promote motor development in their infant in the NICU and at home. After the postintervention test, the participants and researchers discussed the parent education intervention and participants were asked to share their impressions and make suggestions.
The majority (55%) of participants in the first focus group reported that their first choice of educational methods would be to observe their infant’s motor assessment while a physical therapist described the assessment and made recommendations about play activities, as simulated in the video. Two participants (22% of the group) reported that they were equally informed by the lecture and the videotaped assessment. One participant (11% of the group) preferred the lecture format. Although the participants reported that the brochure was informative, they consistently ranked it as the least helpful format. Five participants reported that a combination of approaches would be most beneficial in helping them understand and learn the information. Open-ended questions revealed cross-cutting themes including the need for one-on-one demonstration of the infant’s abilities, the benefits of written material to take home, and the need for support groups or other opportunities to ask the therapist about the information provided (Table 1).
In the second focus group, the mean correct score of the preintervention test was 36.00% (SD 10.39), range 27% to 45% and of the postintervention test was 81.75% (SD 19.45), range 55% to 100%. The scores of all participants improved after the parent education intervention (Fig. 1). All participants were able to report at least one activity they planned to conduct with their infant while in the NICU and another after discharge (Table 2). Participants asked thoughtful questions regarding the motor development of infants born preterm. Discussion relating to the open-ended questions was lively and in some cases participants were able to answer each other’s questions after the parent education intervention and postintervention test. The participants expressed gratitude for the information they received during the focus group.
Parents of infants born preterm are frequently overwhelmed with medical information regarding their infant while in the NICU. This is especially common during frequent medical changes or immediately before discharge. As infants approach hospital discharge parents are often focused on what the infant needs to do to go home rather than the long-term issues of development. In addition, parents are provided with information about their infant’s need for medical appointments and specialized care after discharge. Often times the infant’s developmental needs are overlooked or the parents are not aware that they can support their infant’s motor development before and after discharge from the NICU. Physical therapists have a unique and important role in the NICU to educate parents and caregivers about infant development and provide recommendations to support infant motor development. The purpose of this pilot study was to determine how parents would prefer to learn about their infant’s motor abilities and about the methods to support the motor development of their infant who was born preterm.
Participants in this pair of focus groups suggested that a combination of educational formats would be ideal to meet their educational needs. Observing their own infant’s motor assessment, hearing a physical therapist describe expectations for the infant’s development, and taking home written materials with suggestions to support motor development were the most common parent recommendations. This study also provides evidence that this multiple format approach is beneficial to parents of infants born preterm. All participants in the second focus group improved their understanding of appropriate motor development expectations of infants who were born preterm. Moreover, each parent was able to describe at least one method to support his or her infant’s motor development in the NICU and after discharge. Several parents commented that they never would have thought about all the different ways to play with their infant. One mother who was scheduled to take her infant home the next day reported “I would have had him sit in the bouncy seat all day. I thought that would be the best way for him to learn to move. I never would have put him on the floor to play or helped him play on his tummy if I had not come to this group.”
Similar to the results presented by Scales et al,20 the parents included in this study were willing and interested in learning activities to support their infant’s development at home. In Virginia, as in many states, infants who are born prematurely do not automatically qualify for EI services. Thus parents need to know what to expect from their infants and know how to support their infant’s development when they are discharged from the NICU. Parents may be more likely to ask their pediatrician questions, or seek an appropriate EI referral if the parent has appropriate expectations for their infant’s motor development. Improved understanding of their infant’s development and subsequent age-appropriate developmental expectations will support parent–infant interaction through age and developmentally appropriate play as well.
This pilot study had several limitations. First, the participants in the focus groups volunteered to participate in this study and were required to speak and understand English. Demographic information was not collected on the participants or their infants to encourage inclusion of parent who might otherwise refuse participation. As a result, the findings of this pilot study may not represent the views of a larger population of parents of infants born preterm. The demonstration of the motor assessment was conducted using a videotaped infant assessment rather that each participant’s infant. Although participants did not report any concerns, it is possible that parents may have difficulty in observing their own infant’s motor assessment and participating in follow-up discussions during a single session. The timing of the intervention was not investigated in this study. It is possible that conducting the parent education intervention shortly before discharge may increase parent’s sense of being overwhelmed. Future studies should consider the timing during the NICU hospitalization to complete parent education interventions. Finally, the preintervention and postintervention test questions and the open-ended discussion questions used in this study were designed for this study. Neither was validated before this study and will need to be updated before they are used in future studies.
The intent of this parent education intervention was to provide parents with some individual information regarding their infant during the motor assessment in addition to providing some general information about motor development of infants born preterm. The inclusion of this general information such as adjusted ages, norms for motor milestones, and activities for play may reduce relevancy of the intervention for some infants with complex medical conditions. For example, a PT may not want to review the expectations for prone head control and prone play activities with the parent of an infant who cannot be placed in prone for medical reasons.
Future studies of parent’s preference for education should include larger stratified samples, non-English speaking parents, independent investigators to evaluate the themes in the focus groups, and should investigate the most appropriate time to deliver educational materials on motor development. Future studies should refine the inclusion criteria to ensure that all the information provided is appropriate for the infant’s whose parent participate or should allow for variation in the handouts provided based on the infant’s identified needs and abilities.
Infants who are born prematurely at less than 32 weeks of gestation are at a higher risk for developmental delays than infants born after 32 weeks of gestation. However, many infants born at less than 32 weeks of gestation, without severe neurological conditions, do not receive EI services at the time of discharge from the NICU. The parent education intervention described here could serve as a tool to both educate parents and examine the infants motor abilities prompting the most appropriate, and cost effective, referrals to EI services. Further research is needed to determine if this parent education intervention will be effective in enhancing motor development and parent–infant interactions.
Physical therapists have an opportunity to support the motor development of infants born preterm by educating the parents of these infants. The results of this pilot study support the use of a combination of formats to educate parents of infants born preterm on their infant’s development and methods to support motor development in the NICU and at home. Parents included in this study were appreciative of information that empowered them to support their infant’s motor development.
Further research is needed to investigate the effect of the parent education intervention on parent–infants interactions, infant play routines, and motor development.
The authors acknowledge Cathy Van Drew, PT, DPT and Shaaron Brown, PT, DPT for their assistance with recruitment and data collection. They also thank Jessica Hubbard, DPT and Ashley Cook, DPT for their assistance in developing portions of the educational materials in partial competition of their Leadership Education in Neurodevelopmental Disabilities (LEND) Projects. The authors acknowledge the parent participants who provided their honest feedback and the nurses who identified eligible participants and assisted with recruitment.
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Keywords:© 2008 Lippincott Williams & Wilkins, Inc.
Early intervention; health knowledge/attitudes/practice; neonatal intensive care unit; parents/education; physical therapy methods/education; premature infant/growth and development