Parent and Therapist Perceptions of the Feasibility, Acceptability, and Benefits of a Weekly Therapist-Led Massage Program for Extremely Preterm Infants in Neonatal Intensive Care
Abstract
:1. Introduction
2. Materials and Methods
2.1. Study Design
2.1.1. Setting
2.1.2. Parent Participants
2.1.3. Therapist Participants
2.2. Intervention
2.2.1. Standard of Care
2.2.2. TEMPO Intervention
2.3. Outcome Measures
2.3.1. Parent Interviews
2.3.2. Therapist Focus Group
2.4. Data Collection
2.4.1. Parent Interviews
2.4.2. Therapist Focus Group
2.5. Data Analysis
2.5.1. Parent Interviews
2.5.2. Therapist Focus Group
3. Results
3.1. Parent Interviews
3.1.1. Feasibility of TEMPO
I was just able to—halfway through his stay I had to go back to work, but my job was just very, um, good about letting me go when I needed to go, and I only went back part time for a while…I, you know, if I messaged (the therapist) and said I couldn’t come the day I was supposed to be, it wasn’t an issue. If I ever had to, like, meet with (the therapist) on a day I was supposed to be at work, I could move stuff around. So, both the hospital and my job made it very easy to meet with them.(Case 101)
3.1.2. Acceptability of TEMPO
Um, I liked it, it was definitely—it was nice to be able to keep my baby calm, find something new, and to feel like I was doing something to help him. In the NICU it’s always the doctors or nurse telling you what to do, you (don’t) get a say, you don’t get to do anything, so it was something I could do as a parent to help him.(Case 104)
I feel like especially in a NICU setting it’s just hard, especially for so long, they were just basically in a place like where we couldn’t hold (the infant) a lot or touch (the infant), so I feel like being able to maximize those times was really important, and I think that it 100% helps the babies developmentally as well, so we have nothing but great things about the whole TEMPO program.(Case 111)
I think it was just personalities, it was not like anyone said or did anything differently. I don’t know if there’s a way to like make that clear to families, when they are—if anyone seems reluctant at first of like, “Would it be helpful if a different physical therapist came or would you like to be with a different”—or even just like having a different physical therapist come without them asking for it. And just kind of giving that as an option.(Case 109)
3.1.3. Perceived Benefits of TEMPO
Honestly, we loved it so much. We just felt very supported, um, you know everyone was very engaged, everyone, you know, knew (my baby). We felt very connected to the therapist.(Case 105)
Pretty much, um, whenever she was born, she was born 25 weeks so whenever the TEMPO therapists came to me saying that they were going to guide me through everything, ‘cause I was scared myself to even hold her, but they got me through it’.(Case 114)
3.1.4. Feasibility of Massage at Home
(my baby has) kind of gotten, you know, used to the routine where we give him a bath and then, you know, we grab some of the lotion and then we massage him and then put the pajama on, so I think he kind of, you know, anticipates what’s happening next, which is really cute.(Case 119)
Um, the only thing that I could say is that the massage we haven’t been doing that since (the baby) was about six months old because she just (won’t) stay still long enough now…. She’s like ‘I don’t want it’. (laughs)(Case 110)
3.1.5. Perceived Maternal Benefits of Massage
It’s very calming and soothing for me or her dad, whichever one of us is doing it. Um, you know, as long as we kind of are in a situation where we can focus on her. But it’s nice because we kind of put our phones down, and you know, we’re not distracted, so I would say, it has to equally a calming and soothing effect on both of us.(Case 105)
It’s relaxing for me as well especially if I know it’s relaxing for her and calms her.(Case 121)
3.1.6. Perceived Infant Benefits of Massage
Oh, it was great, cause I mean, I’m gonna say it was great because, in my mind, I thought that was really healthy [for] her.(Case 126)
Just how to interact with her, you know, just introducing those, uh, massage techniques and how to keep her from being nervous or, you know, just try to calm her down. It helped me try to calm down too. It helped us with the bonding.(Case 103)
3.1.7. NICU Environment
Yeah, it was a nice part of the day. It made the hospital stay not seem as hectic (laughs) and stressful. You know, you have that downtime once a week, it’s just kind of you and your baby bonding in a different way than how you normally would in a hospital and, um, to me it was a really relaxing part—it was something I looked forward to each week because it was working for both me and him.(Case 101)
3.2. Therapist Focus Group
3.2.1. Feasibility of Implementing TEMPO as Standard of Care
I think the other thing that ties into it a little bit, but as a new NICU therapist and just thinking about productivity and trying to make sure that I’m still meeting a level of productivity, but TEMPO, I felt like the work for TEMPO, you are not going to be able to bill for that, all of the coordination, that kind of stuff, but it still sucks up a little bit of your time and that goes back to being staffed adequately, right?(Therapist 4)
We’re not staffed in a way that we could provide Tempo type clinical care to every baby on our caseload. Trying to manage parents’ schedules and work around and make the phone calls and then they don’t show up and there’s logistics that go into it.(Therapist 1)
One of the hardest parts for me was ethically figuring this out because TEMPO takes so much time and extra effort that ultimately that’s time that is taken away from another baby that’s not TEMPO enrolled.(Therapist 1)
I think there are certain cases where it wouldn’t be appropriate for sure. For example, there’s some babies (who) are not going to survive, but we’re going to support them…also just some of our more severe diagnoses where (patients) are a lot more involved, I don’t think it would be appropriate for those either, or not all components of it anyway.(Therapist 2)
3.2.2. Acceptability of TEMPO: Clinical Best Practices
I feel like I…it’s totally just my opinion, but I do think our babies (who participated in TEMPO) with extreme prematurity have done extremely well. Not to say that there aren’t some of them who have had delays, but I’m just thinking of several, had lots of bumps along the way, and did really well…that was so gratifying to see the value. I think the difference is the family’s involvement, that they felt comfortable as caregivers to support their baby’s development. And I think that makes a huge difference. And that was so valuable for me to be able to see, for me to perceive better outcomes from that.(Therapist 1)
Yeah, so they send me pictures and videos, and it’s the most lovely thing because…it’s good for me and my professional well-being to see where they end up, but also for them to have a point of reference if they had a question.(Therapist 1)
It gave me a structure for when to introduce different topics and how to communicate with parents. That really helped me become a better therapist just by having some accountability for implementing those things.(Therapist 4)
It definitely made me more intentional about scheduling with parents. I always, before Tempo, was hoping that I’d find a parent at a bedside, but we need to be a little bit more proactive than just hoping that they’re going to be there. That carried over to other patients as well.(Therapist 2)
It’s a great standard to set, to have these weekly sessions with parents…I think is very effective and it made me feel like a better clinician. I think parents felt more bonded and connected with their babies.(Therapist 2)
One of the hardest parts for me was ethically figuring this out because TEMPO takes so much time and extra effort that ultimately that’s time that is taken away from another baby that’s not TEMPO enrolled, right?(Therapist 1)
3.2.3. Infant Massage
There’s a lot of research that says that bonding with their baby is so important for outcomes as well. Many types of outcomes. And so, if we can help facilitate that bonding and their role as a caregiver from the outset, then we’re setting them up for more success in the future.(Therapist 1)
I think that’s about how I say it when I talk to parents about (massage). “This is your chance to give them this positive tactile experience”. That gives parents a sense of control, a sense of involvement. They’re really doing something positive as a caregiver for their baby.(Therapist 2)
3.2.4. TEMPO Focus Areas
I think the…parent education is sort of foundational for all the other things to happen…we’re only there a snapshot of time every week with these babies, but parents are the consistent caregiver. So, if we can teach them different techniques, like massage or ways to support sensory motor development, then that just makes it all work.(Therapist 3)
…you can do them all in isolation of course…but in order to get the full benefit of those therapeutic interventions and our services, it’s best practice for us to integrate them together.(Therapist 1)
3.2.5. Accessibility
…families that have fewer resources and are strapped to keep their job and have all these other stressors at home…It’s much more difficult to help to support them and meet them face to face.(Therapist 1)
It’s been so nice for parents to have the option to FaceTime. And that’s something that outside of TEMPO, you can’t really do (in a therapy session).(Therapist 4)
4. Discussion
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
Appendix A. Parent Semi-Structured Interview Guide
- Have you received our emails since your hospital discharge?
- Is your baby currently receiving outpatient or Early Intervention physical therapy or occupational therapy?
- Do you have any questions for me about physical therapy interventions or massage with your baby?
- Do you have all of the materials you need to complete physical therapy interventions and massage with your baby (written instructions, massage oil, etc.)?
- How often have you tried physical therapy interventions with your baby? Have you tried any of the activities from the email blasts or from your last clinic visit with the PT?
- How often have you tried massage with your baby?
- Which body part of the baby do you massage most often?
- What barriers are there to doing massage with your baby at home now, if any?
- How do you feel when you massage your baby?
- How does your baby respond when he/she is massaged?
- Did you find the information you received in the hospital from the TEMPO program helpful? What in particular do you remember or remember being helpful?
- Were the materials you received (instruction packets) useful for learning about your infant?
- Did you like learning to massage your baby in the hospital?
- Was it difficult to commit to meeting with the therapist for the TEMPO program weekly?
- If you tried the video chat option for the weekly TEMPO program, did you find it helpful?
- Did you like receiving the email blasts? Did you find that you received too many or not enough? Was the information relevant or helpful? Did the emails help you remember to try some activities or massage?
- Was the phone call before first follow-up appointment helpful for you? Did you find that you were able to keep up physical therapy interventions and massage more often at home after the phone call?
- Was the massage review at the first follow-up appointment helpful for you? Did you find that you were able to keep up massage more often at home after the review?
- Overall, what did you think of the TEMPO program?
- If you had a friend with an extremely preterm infant, would you recommend they participate in the TEMPO program?
Appendix B. Therapist Focus Group Guide
- What is the role of parent involvement in clinical best practices for neonatal therapists?
- Can you describe best practice for the NICU clinical setting for therapists?
- What would best practice look like in an ideal setting?
- In what ways did participating in TEMPO enhance or changed your clinical practice, if at all?
- In what ways did participating in TEMPO detract from your clinical practice, if at all?
- What is the usefulness of infant massage in the NICU setting? What do you use it for? Why is it indicated?
- TEMPO focuses on 2 main areas: (1) parent education and involvement; (2) infant massage. Do you feel that any one of these areas is more important than another? Are they all equal in how they should be addressed by therapy?
- What were the challenges to implementing weekly therapy sessions with parents?
- What made it easier to implement weekly therapy sessions with parents?
- What would make it easier? What could change?
- Were the written materials helpful for implementing TEMPO? Specifically ask about:
- Early education packet, discharge packet, and massage instructions
- Is there additional information you would include or remove?
- What did you generally like about TEMPO?
- What did you generally not like about TEMPO?
- If you could change anything(s) about TEMPO, what would it(they) be?
- How would you feel about TEMPO becoming part of standard of care for the NICU in the future? Is it appropriate for all infants, diagnoses, etc.? Or more appropriate for certain populations?
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Case Number | Role | Age (Years) | Race | Ethnicity | Gestational Age (Weeks) | Therapy Services after Discharge | Parent Performs Therapy Activities | Massage at 12 Months | Body Part | Difficult to Meet for TEMPO | Would Recommend TEMPO? |
---|---|---|---|---|---|---|---|---|---|---|---|
101_0 | Mother | 24 | W | NH | 27 | Y (2x/week) | Y | Y (EOD) | Arms, legs | N | Y |
102_0 | Mother | U | W | NH | 27 | N | N | Y (EOD) | Back, legs | N | Y |
103_0 | Mother | 40 | B | NH | 25 | Y (1x/week) | Y (3x/week) | Y (3x/week) | Legs, feet | N | Y |
104_0 | Mother | 25 | W | NH | 24 | Y (1x/week) | Daily | Y (Daily) | Legs | N | Y |
105_0 | Mother | 32 | W | NH | 26 | Y (monthly video) | Y (3–4x/week) | Y (2–3x/week) | Back, arms | N | Y |
109_0 | Mother | 32 | W | NH | 25 | N | N (normal development) | Y (EOD) | Legs, feet | N | Y |
110_0 | Mother | 34 | W | NH | 25 | Y (2x/week) | Y (Daily) | N (stopped at 6 months) | N | Y | |
111_1 and 111_2 | Mother | 31 | W | NH | 26 | Y (1x/week) | Y (Daily) | Y (1x/week) | Legs | N | Y |
112_0 | Mother | 29 | B | NH | 27 | Y (1x/week) | Y | Y (Daily) | Whole body | N | Y |
113_0 | Mother | 37 | W | NH | 24 | Y (1x/week) | Y (Daily) | Y (as needed) | Legs, feet | N | Y |
114_0 | Mother | 25 | U | H | 25 | N | Y (Daily) | Y (3–4x/week) | Nack, chest, feet | N | Y |
119_0 | Mother | 51 | W | H | 27 | N | Y (Daily) | Y (5–6x/week) | Back, arms, legs, chest | N | Y |
120_0 | Mother | 39 | B | NH | 27 | N | Y (Daily) | Y (Daily) | Legs, back | N | Y |
121_0 | Mother | 24 | B | NH | 27 | N | Y (Daily) | Y (Daily) | N | Y | |
125_0 | Mother | 36 | B | NH | 27 | Y (play therapy) | Y (Daily) | Y (Daily) | Feet, hands | N | Y |
126_0 | Mother | 40 | U | NH | 27 | Y (1x/week) | Y (Daily) | Y (Daily) | Head | N | Y |
127_0 | Mother | U | W | NH | 25 | Y (1x/week) | Y (Daily) | Y (2x/month) | Feet, hands | N | Y |
128_0 | Mother | 38 | U | U | 27 | N | N | Y (Daily) | Arms, shoulders | N | Y |
130_1 and 130_2 | Mother | 33 | B | NH | 27 | Y | Y (Daily) | Y (3–4x/week) | Back, legs | Sometimes | Y |
Components of Intervention | Standard of Care | TEMPO |
---|---|---|
PT and OT Initial Assessment | X | X |
Early Parent Education Session | X | |
Weekly PT and OT Intervention | X | X |
Weekly Parent Education Sessions | X | |
Infant Massage Parent Education Session | X | |
Discharge Handout | X | X |
Discharge Parent Education Session | X |
Code | Subcode | Definition | Descriptive Codes | In Vivo Phrases Examples |
---|---|---|---|---|
Feasibility of TEMPO | Facilitators of TEMPO | Apply this code when text describes situations or factors that made weekly participation in TEMPO feasible, easier, or more reasonable. | Work flexibility | “part-time” “flexible schedule” |
Therapist flexibility | “able to reschedule” “communication” | |||
Residing locally | “staying at Ronald McDonald House” | |||
Use of technology | “able to…facetime me if I could not physically be there” | |||
Barriers to TEMPO | Apply this code when text describes situations or factors that made weekly participation in TEMPO more difficult or challenging. | Work-related | “could only visit certain times” “no maternity leave” | |
Other children at home | “we also had a 3 year old at home” | |||
COVID+ | “had to quarantine” | |||
Feasibility of Massage at Home | Facilitators to Massage at Home | Apply this code when text describes situations or factors that made parent-administered massage feasible, easier, or more reasonable | Part of bedtime routine | “something we do before he goes to bed” |
Use to calm down the infant | “it kind of, like destimulates her” | |||
Barriers to Massage at Home | Apply this code when text describes situations or factors that made parent-administered massage more difficult or challenging. | Infant older and more mobile | “bigger” “squirmy” “mobile” “rolling over” | |
Time | “finding the time” “working full time” | |||
Acceptability of TEMPO | Likes | Apply this code when text describes components of the TEMPO program that mothers liked or enjoyed. | Written information | “helpful in learning about like what to expect” |
Learning how to massage | “helpful” “enjoyable” | |||
Parent Education and Engagement | “learning ways to help” “knowing what to do” | |||
Set aside time | “looking forward to” | |||
Parent and Therapist Relationship | “one on one” “connection” | |||
Dislikes | Apply this code when text describes components of TEMPO program that mothers did not like or enjoy. | Wanted more information | “would have loved to have more things written down to look over” | |
Did not connect with therapist | “connection between PT and parents is important” | |||
Perceived benefits of TEMPO | Apply this code when text describes ways that the mother felt that the TEMPO program was beneficial or helpful | Parenting competence—parent’s ability to care for infant improves | “reassured” “prepared” “felt comfortable” | |
Mutual benefit—benefits both mother and infant | “working for both me and him” “helps baby as well” | |||
Support—parent felt supported by therapist | “guidance” “cared about me” “by my side” | |||
Gratitude—parent felt sense of gratitude for therapist | “appreciated” “sad it’s over” “glad we did it” | |||
Perceived benefits of Massage | Infant Benefits | Apply this code when text describes ways that the mother felt that parent-administered massage was beneficial or helpful for the infant. | Happy | “excited” “enjoys” |
Increased vocalizations | “giggles” “laugh” | |||
Relaxed | “calm” “relaxed” “still” | |||
Parent–infant bonding | “focus” “stare” | |||
Physical changes | “muscles relax” | |||
Parent Benefits | Apply this code when text describes ways that the mother felt that the parent-administered massage was beneficial or helpful for the mother. | Happy | “great” “happy” | |
Relaxed | “helps calm” “soothing” “less stressed” | |||
Improved mental health | “less stressful” “less worried” | |||
Parent–infant bonding | “memory” “focus” | |||
NICU Environment | Apply this code with text describes ways that the NICU environment influenced the mother’s emotional state | Stressful/anxious | “hospital stay… hectic” | |
Limited control | More in control | |||
Fear/uncertainty | ‘cause I was scared” |
Code | Definition | Subcode | Definition | In vivo Phrases Examples |
---|---|---|---|---|
Feasibility of Implementing TEMPO as Standard of Care | Apply this code when therapists discuss barriers and facilitators around TEMPO becoming part of standard of care for the Newborn Critical Care Center, if it is appropriate for all infant populations, and necessary changes to make TEMPO implementable. | Barriers | Apply this code when text describes barriers to TEMPO as Standard of Care | “you are not going to be able to bill for…all of the coordination, that kind of stuff, but it still sucks up a little bit of your time” |
Facilitators | Apply this code when text describes facilitators to TEMPO as Standard of Care | “…we (parent and therapist) had this mutual understanding that we’re going to do this thing together and I think it set us up for more success because of that.” | ||
Needs to individualize plans of care within TEMPO program | Apply this code when text describes certain populations that would benefit most from TEMPO and/or need for individualized plan of care within the TEMPO framework | “So maybe having a best practice, but also off ramps that you could go depending on the patient.” “…there are certain cases where it wouldn’t be appropriate for sure” | ||
Institutional and System Level Changes necessary to implement TEMPO | Apply this code when suggested changes are at the systems or organizational level in order to implement TEMPO | “This is best practice, it really is. But logistically, is this where we can go?” …”we only have a certain amount of time and like seeing our caseload was just so high sometimes that we have to choose and we have to triage.” | ||
Acceptability of TEMPO: Clinical Best Practices | Apply this code when text describes the best practice for the NICU clinical setting for physical therapists or what best practice would look like in an ideal setting. | Parent Education and Engagement | Apply this code when text describes the role or importance of parent involvement in clinical best practices for NICU therapists | “(parents) felt comfortable as caregivers to support their baby’s development…that makes a huge difference. And that was so valuable for me to…perceive better (infant) outcomes” “therapists come and go but parents are the constants” |
Parent and Therapist Relationship | Apply this code with text describes therapists liking increased time with parents | “relationships with family is the biggest component that I enjoyed” | ||
Enhancement of Clinical Practice | Apply this code when text describes how TEMPO enhanced or changed clinical practice | “If we were implementing best practice, that’s what it would look like.” “made me feel like a better clinician” | ||
Structure for Parent Education | Apply this code when text describes therapists liking structure and motivation to connect with parents | “made me more intentional about scheduling with parents” “…having the structure laid out in that accountability, I really appreciated that.” “TEMPO gave me a structure for when to introduce different topics and how to communicate with parents.” | ||
Detractions from Best Practice | Apply this code when text describes how TEMPO detracted from best practice | “(TEMPO) might affect other babies because I might not have enough time to see two babies this care time.” “One of the hardest parts for me was ethically figuring this out because TEMPO takes so much time and extra effort that ultimately that’s time that is taken away from another baby that’s not TEMPO enrolled, right?” | ||
Infant Massage Benefits | Apply this code when text describes the usefulness or benefits of infant massage, and/or why it is used or indicated | Parent–infant Bonding | Apply this code when benefits of massage are referencing parent–infant interaction, bonding or attachment | “infant parent bonding is obviously at the forefront’ |
Infant-centered Benefits | Apply this code when text describes infant-related benefits of massage | “…a lot of literature that there’s weight gain, decreased length of stay, improved respiratory efforts, their motor patterns can be…optimized with the integration of such a positive sensory stimulation.” | ||
Parent-centered Benefits | Apply this code when text describes parent-related benefits of massage | “…gives parents a sense of control, a sense of involvement. They’re really doing something positive.” “Helps relax them, decrease their stress.” “…for their breast milk production, pumping.” | ||
TEMPO focus areas | Apply this code when someone discusses their thoughts on TEMPO focus areas: 1) parent education and engagement, 2) infant massage, and thoughts on their importance or how they are addressed by therapy | Parent Education and Engagement | Apply this code when text describes parent education and engagement focus area | “Parent education is sort of foundational for all the other things to happen.” |
Multi-component intervention is optimal | Apply this code when text describes the need to integrate multiple components of interventions | “…you can do them all in isolation of course…but in order to get the full benefit of those therapeutic interventions and our services, it’s best practice for us to integrate them together.” | ||
Accessibility | Apply this code when text describes therapist ideas or concerns about accessibility of weekly parent education | Health Equity | Apply this code when text describes therapists concerns about the accessibility of TEMPO to parents with few resources | “…families that have fewer resources and are strapped to keep their job and have all these other stressors at home…It’s much more difficult to help to support them and meet them face to face.” |
Use of Technology | Apply this code when ideas around technology were used to support parent education | “it’s been so nice for parents to have the option to FaceTime.” |
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© 2023 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
Share and Cite
McCarty, D.B.; Dusing, S.C.; Gilbert, A.; LeBlond, K.D.; Soucie, M.; O’Shea, T.M. Parent and Therapist Perceptions of the Feasibility, Acceptability, and Benefits of a Weekly Therapist-Led Massage Program for Extremely Preterm Infants in Neonatal Intensive Care. Children 2023, 10, 1453. https://doi.org/10.3390/children10091453
McCarty DB, Dusing SC, Gilbert A, LeBlond KD, Soucie M, O’Shea TM. Parent and Therapist Perceptions of the Feasibility, Acceptability, and Benefits of a Weekly Therapist-Led Massage Program for Extremely Preterm Infants in Neonatal Intensive Care. Children. 2023; 10(9):1453. https://doi.org/10.3390/children10091453
Chicago/Turabian StyleMcCarty, Dana B., Stacey C. Dusing, Alana Gilbert, Kristen D. LeBlond, Meredith Soucie, and T. Michael O’Shea. 2023. "Parent and Therapist Perceptions of the Feasibility, Acceptability, and Benefits of a Weekly Therapist-Led Massage Program for Extremely Preterm Infants in Neonatal Intensive Care" Children 10, no. 9: 1453. https://doi.org/10.3390/children10091453