Occup Ther Health Downloaded from informahealthcare.com by University of Guelph on 01/01/15 For personal use only.

Oral Motor Feeding in the Neonatal Intensive Care Unit: Exploring Perceptions of Parents and Occupational Therapists Michelle J. Ward, BS, OTS Kristen B. Cronin, BS, OTS Paula D. Renfro, BA, OTS Dianne Koontz Lowman, EdD Patricia D. Cooper, MEd, OTR/L ABSTRACT. The purpose of this qualitative study was to explore the perceptions of three occupational therapists and three parents regarding occupational therapy services provided in the neonatal intensive care unit. Data were obtained through participant interviews. Role of the occupational therapist, parent training, and time spent with parents were themes that emerged from the therapist interviews. Themes from the parent interviews included occupational therapy intervention and treatment, time spent with occupational therapist, and perceptions. A cross-case analysis addressed two common themes: amount of time spent in parent training and perceptions of training provided. Implications for occupational therapy practice in the neonatal intensive care unit are discussed. [Article copies available for a fee from The Haworth Document Delivery Service: 1-800-342-9678. E-mail address: getinfo@ haworthpressinc.com ] Michelle J. Ward, Kristen B. Cronin, and Paula D. Renfro are graduate students in the Department of Occupational Therapy at Virginia Commonwealth University, Richmond, VA. Dianne Koontz Lowman is Assistant Professor, Department of Occupational Therapy, Virginia Commonwealth University, Richmond, VA. Patricia D. Cooper is Clinician III, Medical College of Virginia Hospitals, Richmond, VA. The authors thank each of the occupational therapists and mothers who participated in the study, Janet Watts, PhD, OTR/L for serving as external auditor and Shelly J. Lane, PhD, OTR/L, FAOTA for her assistance in reviewing the manuscript. This research was conducted in partial fulfillment of the first three authors’ requirements for a Master’s of Science in Occupational Therapy from Virginia Commonwealth University, Richmond, Virginia. Occupational Therapy in Health Care, Vol. 12(2/3) 2000 E 2000 by The Haworth Press, Inc. All rights reserved.

19

20

OCCUPATIONAL THERAPY IN HEALTH CARE

Occup Ther Health Downloaded from informahealthcare.com by University of Guelph on 01/01/15 For personal use only.

KEYWORDS. Neonatal intensive care unit, parent training, feeding, occupational therapy, oral motor

The ability of an infant in the neonatal intensive care unit (NICU) to successfully feed is affected by a variety of performance components including sensorimotor, social, cognitive and psychological. Sucking, swallowing, and breathing as well as the coordination of these three systems with the infant’s behavioral state are all involved in the feeding process. Dysfunction in any one area can affect the infant’s ability to feed efficiently (Wolf & Glass, 1992). Occupational therapists (OTs) are often involved in the treatment process for children with feeding difficulties. The NICU environment requires that OTs have specialized knowledge and skills including an understanding of neonatal medical conditions, developmental vulnerabilities of infants in the NICU, the ecology of the NICU, theories of neonatal behavioral organization, and the unique needs and concerns of infants’ families (AOTA, 1993; Dewire, White, Kanny, & Glass, 1996). Therapists assist families in promoting the infant’s optimal development while considering the physiological and medical status of the infant. Occupational therapists use treatment, education, research, and consultation to meet the individual treatment goals of each infant and family (AOTA, 1993). In 1996, Dewire et al. surveyed 174 OTs to ascertain their role in the NICU. Ninety one percent of therapists reported consulting with parents or caregivers as a primary responsibility. Enhancing parent or caregiver skills through demonstrations and home programs and facilitating feeding and oral motor skills were reported as essential skills for NICU practice by 85% and 84% of therapists, respectively (Dewire et al., 1996). In another recent study, Caretto, Francois, McKinney, Lowman, and Murphy (in press) surveyed 100 NICU specialists to ascertain the structure of parent education and the role of the OT in the NICU. Results indicated that OTs were highly involved in teaching parents. Over 85% of OTs self-reported providing parent training in positioning, infant developmental milestones, infant states and cues, parent-infant interaction, feeding, and play (Caretto et al., in press). In a 1998 study by White et al., OTs and parents agreed on the following types of training provided and received: positioning, oralfacial stimulation, oral support, and typical feeding development.

Occup Ther Health Downloaded from informahealthcare.com by University of Guelph on 01/01/15 For personal use only.

Ward et al.

21

Therapists reported demonstration, discussion, handouts, hands-on training, and videos as training techniques, and parents reported demonstration and hands-on training as the most common methods of teaching (White et al., 1998). Before OTs provide training to parents they must consider what information is important and what method is the most appropriate. Costello, Bracht, Van Camp, and Carman (1996) developed a Parent Information Binder that facilitates the organization and dissemination of information to parents over time. With this system, parents control the timing, the type, and the amount of information they receive. Drake (1995) utilized a card sort method to determine which learning interests were the most important for parents of infants in the NICU. As the infant in the NICU approaches discharge, parent training becomes pivotal (Arenson, 1988; Gennaro & Bakewell-Sachs, 1991; McKim, 1993; Sheikh, O’Brien, & McCluskey-Fawcett, 1993). Griffin, Wishba, and Kavanaugh (1998) reported that one of the most critical aspects of discharge teaching for parents is receiving information that is specific to their infant’s needs and behavioral cues. According to McKim (1993), parents felt that adequate preparation by NICU staff greatly reduced the stress of discharge. This review of the literature reveals several points. Dewire et al. (1996) and Caretto et al. (in press) have suggested that OTs play a vital role in consultation with parents and in education regarding various aspects of successful infant feeding; however, there is a gap in the literature regarding the amount of time typically spent with families. There is literature which outlines reasons parents may be reluctant to visit the NICU (Coyne, 1995; Gale & Franck, 1998), such as lack of transportation or the need to return to work, but it does not address the amount of time parents spend specifically with OTs. White et al. (1998) revealed consistency between the education provided by OTs and received by parents; however, the authors did not ascertain parental satisfaction levels with the education they received. The purpose of this study, therefore, was to qualitatively explore the perceptions of OTs and parents regarding occupational therapy services provided in the NICU. Specifically: (1) how do OTs view their role in the NICU and how much time do they typically spend providing parent training? and (2) what types of training do parents report receiving from the OT, how much time do they spend with the OT, and how satisfied are they with occupational therapy services?

22

OCCUPATIONAL THERAPY IN HEALTH CARE

METHOD

Occup Ther Health Downloaded from informahealthcare.com by University of Guelph on 01/01/15 For personal use only.

Sample Three OTs were interviewed who met the following criteria: (a) licensed to practice in the state of Virginia, (b) a member of the NICU staff, and (c) provide primary oral motor feeding intervention to premature infants. The NICUs selected for this study were level III NICUs representing geographically diverse regions in the state of Virginia. All three OTs were female and were interviewed at their respective facilities. The three OTs have practiced occupational therapy for 3.5, 15, and 37 years. They have practiced in the NICU for 3, 5, and 22 years, respectively. They currently spend from 30% to 75% of their time in the NICU. Three parents were interviewed who had an infant who met the following criteria: (a) received oral motor feeding intervention from the OT in the NICU and (b) discharged between November 22, 1998 and January 6, 1999. This time frame was chosen in order to allow data collection to begin 4 to 6 weeks after the child was discharged. All of the parents interviewed were mothers, and all three were interviewed in their homes, two in rural settings, and one in a suburban area. One mother had twins who were born at 26 weeks. One twin was discharged after 14 weeks and the other was discharged after 24 weeks in the NICU. The second mother’s son was discharged after 27 days, and the third mother’s son was discharged after 20 weeks. Three infants were feeding orally at discharge and one was being fed by tube. Data Collection and Analysis A list of interview questions was used as a guideline, but questions were modified as needed throughout the interview process. Based on a review of the literature, the researchers developed questions for therapists and parents regarding topics in which parents were trained and methods used when training parents. OTs were also asked how they determined whether or not those topics and methods were valuable to parents. Additional questions asked of the mothers included: (a) do you feel more confident in your role as a parent based on the education you received from an OT, (b) are you satisfied with the occupational therapy intervention, and (c) are there any areas of intervention that you would change?

Occup Ther Health Downloaded from informahealthcare.com by University of Guelph on 01/01/15 For personal use only.

Ward et al.

23

One researcher was present for each interview with an OT. Two researchers were present for each interview with a mother with one researcher conducting the interview and the other observing and assisting where needed (e.g., recording contextual observations). Interviews lasted from fifteen to thirty minutes. All participants read and signed an informed consent form prior to beginning the interviews. All interviews were audiotaped and transcribed verbatim. For triangulation purposes, the researchers observed two of the three OTs providing feeding intervention to an infant in the NICU. The third OT was not observed due to the low census of infants in her NICU during the data collection period. Each researcher recorded fieldnotes throughout the study which consisted of four components: (a) thoughts before each interview, (b) contextual observations during each interview, (c) thoughts after each interview, and (d) methodological changes or issues. Preliminary categories and themes were developed by each of the researchers throughout the data collection process. After the data collection was completed, a more thorough analysis of the data was performed. The researchers coded each interview separately and then met to discuss and compare their analyses. Final coding categories were then developed and analyzed to determine overall themes and patterns. A cross-case analysis was conducted separately for the parent data and for the OT data as well as across the parent and OT data. Rigor The researchers utilized several methods to increase the integrity of the data collection, analysis, and interpretation. The researchers completed a thorough literature review regarding oral motor feeding and the OT’s role in the NICU. The study was conducted under the supervision of research advisors who had conducted prior qualitative research and were knowledgeable regarding this topic. Four main constructs governed the collection and analysis of the data: credibility, transferability, dependability, and confirmability (Lincoln & Guba, 1985). To strengthen credibility, each researcher coded the interviews individually and then critically questioned the other researchers’ analyses. Informal member checks were also used as a summary of the interview was sent to each participant to seek confirmation and clarification of the data.

24

OCCUPATIONAL THERAPY IN HEALTH CARE

To increase transferability, multiple participants were interviewed. Dependability and confirmability were strengthened by utilizing an external auditor (Lincoln & Guba, 1985). A faculty member experienced in qualitative research methods reviewed the data and determined that the conclusions were consistent with the data generated from the interviews.

Occup Ther Health Downloaded from informahealthcare.com by University of Guelph on 01/01/15 For personal use only.

RESULTS After analyzing the interviews, the researchers sorted the data into several categories. Six categories emerged from the OT data. These categories revealed three themes regarding OT perceptions of their function in the NICU pertaining to feeding. The first theme is the role of the OT which includes the categories of general intervention and relationships with other professionals. The second theme, types of training provided for families, is comprised of the general training category. The third theme, time spent with the parents, includes the categories of time spent with parents and relationship with parents. The final category, miscellaneous, did not contribute significant information to the study. The analysis of the mothers’ data led to eight categories which revealed three themes as well. The first theme, occupational therapy intervention and treatment, includes the categories of topics in which OTs provided training, topics in which OTs did not provide training and feeding intervention. The second theme is time spent with OTs and is comprised solely of the time spent with OT category. The third theme in the mothers’ data is perceptions of occupational therapy services which includes the categories of perceptions of mothers and maternal insights. The last two categories, miscellaneous and family history, did not contribute significant information to the study. Occupational Therapist Perceptions Role of the occupational therapist in the NICU. All three therapists stated that, upon referral, they evaluate the infants to determine what difficulties they are having. One therapist stated: We look for all these protective reflexes and oral reflexes, their gag and their tongue lateralization, and check out the lip closure

Ward et al.

25

and the shape of their palate and those sorts of things. And we try them on a bit of formula . . . and see what happens. Watch the monitors, watch the baby.

Occup Ther Health Downloaded from informahealthcare.com by University of Guelph on 01/01/15 For personal use only.

Another therapist stated the importance of looking not only at the direct feeding issues but also at anything else that may be indirectly related to feeding problems. This may include the infant’s ‘‘alertness, motor control, ability to calm himself down, ability to relate to the mom, and anything else that may be physically wrong.’’ After evaluating the infant, OTs reported providing feeding intervention, focusing primarily on the oral motor aspects. As one stated: I would say that the oral motor aspects are my focus. . . They (the infants) have a lot of medical complications which compromise their ability to feed. And I think that’s our goal at this point-- to make sure that every child leaves the NICU feeding by mouth. The OTs reported utilizing many oral stimulation techniques such as ‘‘putting small tastes on a gloved finger or pacifier . . . just very tiny amounts to give them the experience.’’ One OT also reported using the infants’ fingers for stimulation. The OTs indicated that they use other techniques as well such as thickening formula and experimenting with different nipples and bottles. The therapists also reported providing intervention in other areas related to feeding including working with different positioning to increase the comfort and efficiency of feeding. They indicated that they also consider the environment and its effect on the infant. One therapist stated that she will sometimes take a baby into another room with a monitor and feed him just ‘‘to rule out that it’s the environment’’ creating increased stress. Therapists also indicated using different feeding equipment, such as tube-feeding equipment and Haberman feeders, and they reported providing frequent referrals to early intervention services. The OTs described their relationship with other professionals in the NICU with whom they work to provide treatment. For example, one OT stated that she may assist with breastfeeding if there is an interested mother but often lactation consultants are called in, especially if they ‘‘have a child who is breastfeeding and they’re having problems.’’ One of the therapists also stated that both speech language pathologists (SLPs) and OTs provide feeding intervention jointly.

Occup Ther Health Downloaded from informahealthcare.com by University of Guelph on 01/01/15 For personal use only.

26

OCCUPATIONAL THERAPY IN HEALTH CARE

Another therapist stated that while both SLPs and OTs provide feeding intervention, ‘‘the majority of the feeding that takes place in the NICU is actually OT’’ due to the set-up of her particular facility. The OTs indicated that nurses also play an important role in helping with feeding intervention such as providing assistance with tube feeding, communicating with parents, helping to train them in certain techniques, and providing information about the infants and their progress. During two observation sessions, the OTs were observed providing feeding intervention to infants in the NICU. The first OT fed an infant who was born premature, rubbing the nipple on the infant’s lips to encourage her to suck. She was observed reading the infant’s cues and changing the infant’s position as needed. When the second OT arrived to feed an infant, the mother took this as her cue to take a break and leave. The OT and mom spoke briefly but did not discuss the infant’s feeding. While the OT fed the infant, she was observed actively reading the infant’s cues and changing both the infant’s position and the position of the bottle accordingly. Types of training provided for families. While OTs spend a large amount of time providing direct feeding intervention to infants, they also provide training for parents so they will be able to feed and care for their infant at home. In determining what to teach to the parents, all three therapists stated that it depended on what worked for the parents and the baby. As one commented, ‘‘it really depends on what they’re taking out of what you’re telling them and it’s almost as if you modify your education based on that.’’ The therapists commented that they utilize several methods when training parents, including pamphlets, signs, discussions, pictures, and hands-on training. One of the therapists stated that she uses pamphlets which describe developmental milestones if the parent shows interest in that type of information. This therapist has also occasionally used what she calls ‘‘OT recipe books’’ which have pictures on how to hold the baby, where to position the mother’s hands, and other information. Another OT reported placing a sign on the wall above the infant’s crib with suggestions for interacting with the infant and encouraging certain behaviors. This sign is hung as soon as the child is evaluated to allow parents to start learning techniques as early as possible. One therapist also reported that she will occasionally videotape a training session for a family so they may take it home with them.

Occup Ther Health Downloaded from informahealthcare.com by University of Guelph on 01/01/15 For personal use only.

Ward et al.

27

The most common techniques the OTs reported using are demonstration and hands-on training. Often before beginning any training session, they indicated that they will talk to the parents about what they’re doing and how it will benefit their infant. As one stated, ‘‘We do lots of demonstration, hands-on stuff, showing them what to do, observing them doing it, commenting on what they’re doing and guiding them . . . a lot of talking to them beforehand.’’ Regardless of the technique used, the most common topic in which OTs reported training parents is oral motor stimulation. All three of the OTs listed oral motor stimulation as an area of importance especially for those infants being fed by tube. One therapist said she gives ‘‘basic suggestions on what they (parents) can do to offer oral motor stimulation to enhance either feeding or non-nutritive skills.’’ Another therapist emphasized the importance of oral stimulation by stating: Because the baby hopefully will be weaned from the tube and will be able to utilize his oral cavity. And if not, if it’s too dangerous for him, he eventually will be eating . . . and if he doesn’t know what to do with his mouth, he won’t know how to move the tongue for food. One of the therapists indicated that, with some parents, she may discuss anatomy and how it affects their infant’s ability to feed. One therapist also reported that she may teach parents how to provide cheek and jaw support for their infant as well as how to watch for the signs of aspiration. How to properly position the baby during feeding is another topic in which OTs reported training parents. One therapist commented: Because with your NICU babies that are premature, they don’t have the head control that term babies do. And then trying to get the mother to hold the baby so she can see what she’s doing . . . how to hold the baby’s head in good alignment so that she can see what’s going on inside the baby’s mouth. Although many topics focus on the oral motor and positioning aspects of feeding, OTs also reported training parents in the acquisition of developmental milestones and adapting the environment to avoid overstimulation. They indicated that they may also assist the parents in bonding with their infant. One topic all of the OTs reported

Occup Ther Health Downloaded from informahealthcare.com by University of Guelph on 01/01/15 For personal use only.

28

OCCUPATIONAL THERAPY IN HEALTH CARE

discussing is how to read individual infants’ cues prior to and during feeding such as ‘‘what kind of facial expressions to look for, color changes.’’ Time spent with parents. While therapists reported spending a large amount of time providing direct feeding intervention to infants, a common theme indicated by all three therapists was the lack of time they were able to spend training the parents. They reported that they see many parents just once, often on the day of discharge, and they may see other parents once or twice more if they happen to intersect in the NICU. Rarely do they see parents on a regular basis. One therapist commented that ideally she would like to see parents three times: once to meet the family, determine their concerns, and ‘‘work on feeding so they get a basic introduction who (she is) and what (she does),’’ a second time to focus on specific training the parents need, and then again at discharge. However, she said this rarely happens. Several explanations were given for the lack of training time, one of which was the disparity in schedules. The therapists stated that often parents come in at night or on the weekends when the OTs are no longer there. One therapist said that her facility’s hours, ‘‘which are 7:30 to 4:00, there are a lot of families that are working during these hours. So typically we miss them.’’ Another commented, ‘‘you have to set appointments up or you’ll miss them, particularly nowadays with families working.’’ Others reasons included parents waiting until their infants were less critical so they can spend more time with them, mothers saving their maternity leave until their babies were discharged, and a lack of interest shown by the parents in what the OTs were doing. The OTs commented that efforts are made to get in touch with families. Sometimes they will tell parents to ‘‘leave a note at the bedside’’ if the parents want to speak with them or they will call the parents in an effort to communicate with them. As one therapist stated, ‘‘we certainly make big efforts to try to catch them when they’re there. We leave messages for nursing-- page us as soon as the parents come in and things like that.’’ Parent Perceptions Occupational therapy intervention and treatment. The mothers who were interviewed identified many feeding techniques in which the OTs provided training. They identified that the OTs provided them with

Ward et al.

29

training regarding bonding, environment, muscle tone, oral stimulation, oral support, different types of nipples, thickening liquid, positioning, and the suck-swallow-breathe pattern. All the mothers identified that their OT trained them in reading infant cues. One mother said:

Occup Ther Health Downloaded from informahealthcare.com by University of Guelph on 01/01/15 For personal use only.

She talked about how he goes to different colors, when he turns red, he dribbles real bad. . . . She talked about the different signals that he would give us to say that he was overstimulated, she was great. Coming with three other kids, we didn’t do so well with feeding and it was because he was getting overstimulated. Mothers identified other roles carried out by the OTs both when they were present and when they were absent. One mother reported receiving consultant services from occupational therapy during several videofluoroscopies: She’d come to the video swallow. We’d come back and she’d make the notes and everything. Then she’d come and talk to me about what she thought they would do. Obviously she couldn’t make the decision, but she would let the doctor know. She would say, ‘‘I think we’re ready.’’ The mothers identified other feeding intervention services provided by the OTs including assisting with non-nutritive sucking treatment, coordinating feeding treatment with the mother so she could nurse, and providing information on early intervention. One of the mothers indicated that she was not trained by her OT in positioning or modifying the environment and another reported that she did not receive training in play or breast-feeding. Mothers identified that nurses and lactation specialists carried out some of these roles. One mother identified nurses as the professionals who taught them how to care for the nasogastric tube. Another mother reported nurses as the professionals who determined how much to thicken the formula. She also identified that nurses gave her information on parent-infant bonding. One mother reported that the lactation specialist worked with her on breast-feeding and that the nurse would stay with her while she breast fed. Time spent with occupational therapist. All three mothers reported that the time they spent with their OT was limited and all listed

30

OCCUPATIONAL THERAPY IN HEALTH CARE

Occup Ther Health Downloaded from informahealthcare.com by University of Guelph on 01/01/15 For personal use only.

possible reasons for why it was difficult to meet with them. The mothers stated that the OTs had schedules to keep and that they were not able to be at the hospital during the times the therapist worked with their child. The mothers had concerns about the lack of opportunity that they had to spend with their OT while their child was in the NICU. They reported that the OTs made attempts to meet with them more, but that their schedules did not allow them to be at the hospital at the same time as the therapist. One mother explained by saying: I just met with her once and that was just because we came at such odd times . . . . she was trying to get with us, but . . . .we were there sometimes morning, sometimes night, but we did catch her once. She told me if there were any questions I could call her. Or the nurses could have her come up, if I came in the afternoon and wanted to see her and she had already been there. She would come up and spend time with us. Another mother explained that she was only able to meet the OT once because: When I went she had already, the occupational therapist, she had already done what she had to do. She is on a time schedule, and I was at work so with the times I came, she had already been, or I missed her. One mother realized that she and the therapist had incompatible schedules, but she did say she would have liked to have more time with the OT working with her twin boys. She reported: Not a substantial amount of time, but a fair amount . . . not as much as I would have liked to. I didn’t see her as often as I would have liked because she used to come at 9:00 or something in the morning and I used to only manage to see (Baby A) later because I had (Baby B) at home. One mother also expressed that her only time to meet with her OT was on the day of discharge because she had been unable to be there any other time. She said: But when I got with (the OT) that last day, it was a rush, rush thing and she only had a few minutes with me because somebody

Ward et al.

31

Occup Ther Health Downloaded from informahealthcare.com by University of Guelph on 01/01/15 For personal use only.

else needed me and it just was a rush, rush thing. I was trying to learn all of the equipment and see her and her and the equipment man, they were like, ‘‘I need her.’’ [OT] ‘‘And I need her too.’’ [equipment man] That’s how it was that day. . . . I learned everything at the last minute. Perceptions of occupational therapy services. The mothers interviewed had both similar and varying experiences and interactions with the OT in the NICU. Several concepts emerged regarding each mother’s individual experience with their OT. Mothers reported on their satisfaction with the services they received, the perceived usefulness of the training, the methods the OTs used, their level of confidence, and the carry-over of the techniques they learned after discharge. All mothers had positive remarks concerning their OT. One was very appreciative of the wealth of information provided by the OT that she had not received previously despite the fact that she had a premature infant three years prior to her present experience. This mother reported: Oh, yes! She was excellent. Our third child was a 29 weeker. We didn’t know any of that stuff. . . . I enjoyed finding out what was going on and knowing the signals, because if he’s going to throw up a red flag to me, I want to know how to react. . . . I couldn’t believe all the stuff that she told me that I didn’t know, after having gone through it. So I was very pleased. . . . She related to all members of the family. . . . I appreciated what she did. All mothers reported that they were satisfied with the services they received from the OTs and that there was nothing else the OTs could have done to better prepare them for feeding their children. One mother reported, ‘‘What they did helped him. No, there wouldn’t be anything I would change.’’ Another said, ‘‘I was very pleased with it. I thought she was very good.’’ One mother did report that she was satisfied with the services that she received; however, she would have preferred that the OT do things a little differently. She reported: One thing perhaps that I did want in the beginning . . . I would have liked to do, because I was so nervous with (infant) in the beginning that I didn’t ever know if what I was doing was right or

32

OCCUPATIONAL THERAPY IN HEALTH CARE

Occup Ther Health Downloaded from informahealthcare.com by University of Guelph on 01/01/15 For personal use only.

not and I would have liked more to see how she does it. Because . . . . she was basically like ‘‘okay, you do it’’ and I never knew if I was doing it wrong. Obviously she’d tell me if I was doing it wrong. But I should have told her, but I never did, ‘‘you show me how you do it, then I’ll just copy you.’’ The mothers reported that they felt the intervention they received was useful and that they continued to use the techniques they were taught by the OTs after discharge. One mother reported, ‘‘They were working with him as far as holding his head up, and we still do, and I think it’s helping him.’’ The mothers also reported being trained by the OTs using different teaching methods. They reported that the OTs used hands-on, demonstration, verbal explanation, and handouts. One mother who was given a handout found this technique very useful. She reported: The pamphlet was very informative. She had gone through it and underlined and highlighted a lot of things, and wrote some little notes in the margins. . . . I’ve even gone back and read the pamphlet again since bringing him home. Each mother’s level of confidence ranged from confident to scared and nervous. One mother reported, ‘‘I was pretty confident when I left. The occupational therapist did stuff, I just felt better.’’ Two of the mothers reported that even though they received good training, they still had feelings of uncertainty when taking their babies home from the hospital. One said, ‘‘I think you’re always anxious taking a baby home that had gone through what he did . . . He had had such a rough start at the beginning, you’re always a little nervous.’’ Another mother, who had twins, interpreted her confidence based on the individual child. In referring to her child that came home first, this mother reported: I wasn’t very confident because he did choke. Once I got him home . . . just probably a week or so it took me to get comfortable. It was so scary for us to feed him and now he just eats anything, and we don’t even think twice. When she reported her confidence level of her other baby who had a history of feeding complications, she stated that she does not yet feel

Ward et al.

33

completely confident. As she stated, ‘‘No and I still don’t. Still everyday we feel uncertain . . . .Did we do the right thing here? He hasn’t been home long though, not even a month.’’

Occup Ther Health Downloaded from informahealthcare.com by University of Guelph on 01/01/15 For personal use only.

Cross-Case Analysis of Occupational Therapist and Parent Perceptions A cross-case analysis of the data presents many similarities between the perceptions of OTs and the mothers regarding occupational therapy services in the NICU. The two common themes that emerged were: (1) the amount of time spent with the OTs and (2) training topics and methods. One concern that was mentioned by both groups was the lack of time OTs spent with the parents. Both the mothers and OTs agreed that difficulties with scheduling were largely responsible for this. Two of the OTs reported that they perceived that a lack of parent interest influenced the amount of time spent with the OT. The mothers, however, did not identify a lack of interest as a reason. The OTs expressed a desire to have more time with the parents but despite their efforts, they often see parents once or twice the entire time their child is in the NICU. Many times any training sessions they do have are a result of a chance meeting while the parents are in the NICU. The mothers agreed that the OTs made efforts to get in touch with them throughout their infant’s hospitalization but that sometimes it was impossible to coordinate schedules. They stated that they felt that occupational therapy services were useful and that they continued to use the techniques in which they were trained at home. Two mothers reported that more time spent with the OT would have been beneficial. The OTs stated that often parent education was provided on the day of discharge which was described by both OTs and mothers as a very busy day with many professionals competing for the mothers’ time. Two OTs recognized that this was not the best time but felt that it was typically the only time they could see the parents. The mothers stated that this day was very overwhelming and receiving large amounts of information at one time made the day all that more stressful. The mothers largely corroborated the topics that OTs reported training parents in including reading infant cues, using oral stimulation techniques, and modifying the environment. Both the mothers and the OTs indicated that hands-on training and demonstration were used most frequently during training sessions and the mothers indicated that this was a beneficial method for them. Two of the OTs also

34

OCCUPATIONAL THERAPY IN HEALTH CARE

Occup Ther Health Downloaded from informahealthcare.com by University of Guelph on 01/01/15 For personal use only.

mentioned utilizing written materials which the mother who received them stated as being very beneficial. Another mother stated that she would have liked the OT to provide written materials as well. The cross-case analysis indicates that OTs provided many services for parents with infants in the NICU. These services included providing training on various topics related to feeding and supplying information to help parents care for their infants for home. The services OTs provided were useful for the mothers and they continued to use them at home but both OTs and mothers felt that there was too little time spent interacting with each other. The mothers felt that more time spent with the OT would be beneficial for both them and their infants. DISCUSSION The purpose of this qualitative study was to explore the perceptions of occupational therapists and parents regarding occupational therapy services provided in the NICU. In order to improve current occupational therapy practice in the NICU, OTs must have a greater understanding and appreciation of parents’ needs. Parent perceptions of occupational therapy in the NICU may assist OTs in providing more effective and appropriate training to parents. Both OTs and mothers reported that training was provided on a variety of topics including oral stimulation and reading infant cues. The mother whose infant was still being fed by tube at discharge confirmed the therapists’ reports that OTs emphasize oral stimulation techniques during training. These findings are consistent with the Caretto et al. (in press) and White et al. (1998) studies. As reported by White et al. (1998), OTs and mothers also agreed that the most common methods of training used were hands-on training and demonstration. One mother emphasized the usefulness of written information because she was able to refer to it after she was at home with her infant. Another mother commented that written information would have been useful after returning home. Since this study as well as other literature (Arenson, 1988; McKim, 1993) supports the use of written materials in parent training, OTs should consider utilizing them more frequently, individualizing the information for each family. Utilizing methods similar to the parent information binder outlined in Costello et al. (1996) may be another way of providing written information while fostering communication between OTs and

Occup Ther Health Downloaded from informahealthcare.com by University of Guelph on 01/01/15 For personal use only.

Ward et al.

35

parents. This method would allow parents and OTs to express ideas and concerns when they are unable to see each other on a regular basis. Lack of time was found to be the largest barrier interfering with parent training. Although mothers were satisfied with the training received, they reported a concern over the lack of time available for training. The OTs also reported having this same concern. One OT suggested providing at least three parent training sessions spread out over the infant’s hospitalization in order to increase the amount of time OTs spend with parents. The increase in the number of sessions and opportunities to practice techniques taught by the OT would potentially improve the amount of carry-over into the home and increase the parents’ level of confidence in caring for their infants. As outlined in Sheikh et al. (1993), ‘‘parents will be best prepared to care for their infant at home if they have had many opportunities to practice actual caregiving before the infant is discharged’’ (p. 229). More training sessions would also allow OTs to introduce information and skills gradually so parents are not overwhelmed on the day of discharge and may be better able to retain information (Gennaro & Bakewell-Sachs, 1991; Sheikh et al., 1993). A greater number of sessions may require OTs to make their services more available to parents. This could be accomplished in various ways including a change in OT work schedules to accommodate the hours that parents visit. This may include providing occupational therapy services during evenings or on weekends. It may also be necessary for OTs to make scheduled appointments with parents during hours they do not typically work. Since parent training is an important responsibility of OTs in the NICU (Caretto et al., in press; Dewire, 1996), it is imperative that OTs take the necessary steps to fulfill that role, which may require providing services on a more flexible schedule. The data presented in this study suggest several areas for further research. The lack of time OTs spend with parents was a significant finding in this study. While there have been studies that propose reasons parents may be reluctant to visit the NICU (Coyne, 1995; Gale & Franck, 1998), there is currently no literature that addresses the amount of time that OTs spend with parents in the NICU. Perhaps further research on both the quantity and quality of time OTs spend with parents of infants in the NICU would benefit occupational thera-

Occup Ther Health Downloaded from informahealthcare.com by University of Guelph on 01/01/15 For personal use only.

36

OCCUPATIONAL THERAPY IN HEALTH CARE

py practice in this setting. In addition, exploring the effectiveness of various written materials may provide valuable information for OTs in choosing the best method of parent education. There were several limitations to this study. The parents interviewed consisted exclusively of mothers. Fathers may have provided different perceptions of OT services received in the NICU. Another limitation was that one selected hospital did not have any infants who met the study criteria, therefore families from only two of the proposed hospitals were utilized. A third limitation was that the researchers were unable to observe one OT providing oral motor feeding intervention due to a low census at her facility. In conclusion, this study analyzed the perceptions of OTs and parents regarding occupational therapy services provided in the NICU. Three themes emerged from each set of interviews. OT themes included the role of the OT, parent training, and time spent with parents. The mothers’ themes included occupational therapy intervention and treatment, time spent with the OT, and perceptions. Overall, mothers were satisfied with the occupational therapy services they and their child received; however, several areas were identified that may help OTs improve their current practice. REFERENCES American Occupational Therapy Association. (1993). Knowledge and skills for occupational therapy practice in the neonatal intensive care unit. American Journal of Occupational Therapy, 47(12), 1100-1105. Arenson, J. (1988). Discharge teaching in the NICU: The changing needs of NICU graduates and their families. Neonatal Network, 6, 29-30, 47-52. Caretto, V., Francois, K., McKinney, C., Lowman, D., & Murphy, S. (in press). Current parent education on infant care and feeding in the neonatal intensive care unit: The role of the occupational therapist. American Journal of Occupational Therapy. Costello, A., Bracht, M., Van Camp, K., & Carman, L. (1996). Parent information binder: Individualizing education for parents of preterm infants. Neonatal Network, 13(5), 43-47. Coyne, I. T. (1995). Parental participation in care: A critical review of the literature. Journal of Advanced Nursing, 21, 716-722. Dewire, A., White, D., Kanny, E., & Glass, R. (1996). Education and training of occupational therapists for neonatal intensive care units. American Journal of Occupational Therapy, 50(7), 486-494. Drake, E. (1995). Discharge teaching needs of parents in the NICU. Neonatal Network, 14(1), 49-53.

Occup Ther Health Downloaded from informahealthcare.com by University of Guelph on 01/01/15 For personal use only.

Ward et al.

37

Gale, G. & Franck, L. S. (1998). Toward a standard of care for parents of infants in the neonatal intensive care unit. Critical Care Nurse, 18(5), 62-74. Gennaro, S. & Bakewell-Sachs, S. (1991). Discharge planning and home care for low-birth-weight infants. NAACOG’s Clinical Issues, 3(1), 129-145. Griffin, T., Wishba, C., & Kavanaugh, K. (1998). Nursing interventions to reduce stress in parents of hospitalized preterm infants. Journal of Pediatric Nursing, 13(5), 290-295. Lincoln, Y. S. & Guba, E. G. (1985). Naturalistic inquiry. Beverly Hills, CA: Sage. McKim, E. M. (1993). The information and support needs of mothers of premature infants. Journal of Pediatric Nursing, 8(4), 233-244. Sheikh, L., O’Brien, M., & McCluskey-Fawcett, K. (1993). Parent preparation for the NICU-to-home transition: Staff and parent perceptions. Children’s Health Care, 22(3), 227-239. White, J., Smith, M., Reidy, T., Lowman, D. K., Murphy, S. M., & Lane, S. J. (1998). A national survey: Perspectives of parents and occupational therapists regarding parent education in the neonatal intensive care unit. Unpublished manuscript, Virginia Commonwealth University, Richmond. Wolf, L. S., & Glass, R. P. (1992). Feeding and swallowing disorders in infancy: Assessment and management. Tucson, AZ: Therapy Skill Builders.

Oral motor feeding in the neonatal intensive care unit: exploring perceptions of parents and occupational therapists.

The purpose of this qualitative study was to explore the perceptions of three occupational therapists and three parents regarding occupational therapy...
160KB Sizes 0 Downloads 0 Views