Abstract
The earliest occupational therapy interventions often commence in the neonatal intensive care unit (NICU), where mothers and fathers begin learning how to parent in unexpected surroundings and with unexpected complications. In this hypertechnical and complex environment, occupational therapists have the unique opportunity to harness the power of occupation and support parents’ engagement in their infant’s care to achieve positive family outcomes (Altimier & Phillips, 2013).
Family life exists in the NICU, but it may look and feel very different from parents’ expectations and dreams. Recognition of the existence of NICU-based family life is fueling recommendations from professional organizations, experts, and the literature for a shift in neonatal occupational therapy practice. There will always be a need for specialized technology; medical care; and environmental, biomechanical, neuromuscular, and sensory intervention. The challenge for today’s occupational therapists, however, is to expand their treatment repertoire beyond this medical view (Estes & Pierce, 2012; Wilcock, 1999) to include occupational performance outcomes (Baum et al., 2015) while maintaining an intentional focus on parent and infant occupation and co-occupation in family-centered NICU intervention.
As the primary comforters in their infant’s life, parents—biological or not—have been defined by Mowder (2005) as people who view themselves as fulfilling a familial role through responsivity, bonding, discipline, protection, education, and general welfare. Parents are to be recognized as the main constant in an infant’s life (Lawlor & Mattingly, 1998), and they should be honored as the most accurate interpreters and explicators of parenting in the NICU. According to Pierce (2014), parenting occupations are individually created and reflect what parents (or their infants) are doing or what they desire to do. Using this definition, parent and infant occupations in the NICU are what parents say they are and may include activities known only to them.
Interest in and consideration of occupations shared by the infant and parent is increasing in the occupational science literature and among professional organizations and researchers. These interactions may be more appropriately categorized as co-occupation (Pickens & Pizur-Barnekow, 2009; Pierce, 2009, 2014; Price & Miner, 2009) because of the infant’s innate dependency on others and the reciprocal nature of many activities. Pickens and Pizur-Barnekow (2009) described co-occupation as “embedded in shared meaning” (p. 152), which “requires aspects of shared physicality, shared emotionality, and shared intentionality” (p. 151). Price and Miner (2009) stated, “Occupational therapists provide opportunities for co-occupation that promote the development of the family and support parents by providing the knowledge that family life is still possible” (p. 72). Yet, although the concept of co-occupation has been applied to generalized parent–infant populations (American Occupational Therapy Association [AOTA], 2014; Olson, 2004; Pickens & Pizur-Barnekow, 2009), research describing the nature of co-occupation in the NICU setting is scant.
This shift in thinking about infants as occupational beings and active participants in their family system coincides with the profession’s transformation back to a “discipline focused on occupation” (Polatajko, 1994, p. 591). One limitation of occupation-based neonatal practice, however, may be the lack of clarity surrounding what parent and infant occupations exist in the NICU. Without clear definitions and examples of these constructs, occupational therapists may not recognize or value them as part of practice. Although recommendations for neonatal occupational therapists’ skill level, knowledge base, and general practice have been established (AOTA, 2018), ways in which occupational therapists may uniquely support parent or infant participation in NICU-based occupations have not been clearly explicated.
The purpose of this qualitative study, therefore, was to explore the concept of occupation and co-occupation as described by parents of infants in the NICU and to provide rich descriptions of parent and infant occupations in the NICU setting. This research was developed as part of my doctoral work and was theoretically grounded in the Person–Environment–Occupation–Performance (PEOP) model (Baum et al., 2015). I used a phenomenological approach to build a picture of understanding by gathering and recording information about context, insights, events, and influences on parent and infant occupational performance in the NICU.
Method
Research Design and Participants
A semistructured interview was used to explore the nuances and complexity of NICU-based occupation. Participants were recruited via convenience sampling from a metropolitan 48-bed Level 3 NICU with single-family rooms in the midwestern United States. The medical care team providing developmentally supportive service included five neonatologists, two nurse practitioners, more than 100 nurses, one lactation consultant, one dietician, two occupational therapists, two physical therapists, and one speech-language pathologist. Eligibility criteria included parents (ages 18–40 yr) of hospitalized infants admitted to the NICU at the time of the study. Informational recruitment flyers were posted near NICU entryways. Nurses also provided flyers to families.
If parents were willing to participate, they signed the flyer, provided contact information, and returned it to their nurse. Nurses notified me, and I scheduled a parent meeting and provided a consent form. Parents could choose to conduct the interview in the naturalistic environment of the infant’s room or in a private waiting room. They could interview together or individually (Tong et al., 2007) and were not compensated.
Data Collection
A conversational, semistructured interview was created (Silverman, 2013) that allowed me the latitude to sequence questions for different respondents (Miles et al., 2014). To address methodological integrity, one external qualitative researcher and three multidisciplinary neonatal experts (one nurse, one occupational therapist, and one speech-language pathologist) reviewed the questions and offered feedback. Demographic and interview questions were informed by my 15 yr of experience in NICU practice and an extensive literature search on parent and infant participation in the NICU environment. Although my experience was key in understanding the culture, relationships, and resources available in the NICU, an exploration of my personally held beliefs was necessary to avoid bias in questioning (Levitt et al., 2018; Tong et al., 2007). Interview questions were open ended, activity focused (e.g., “What activities do you value doing/doing with your child in the NICU?”), and supplemented by prompts such as “Can you explain that further?”
Parent interviews were conducted over a 2-mo period in the summer and were carried out at a time determined by the parent, which included evenings, nights, and weekends. Pseudonyms were assigned to ensure confidentiality and protect parents’ identity. Interviews were digitally recorded using a password-protected smartphone application, and field notes were taken. Interviews lasted approximately 30 min (range = 20–40 min). I provided my contact information to parents at the conclusion of the interview.
Data Analysis
I transcribed parent narratives line by line to become more familiar with the data (Riessman, 1993; Ritchie & Spencer, 1994). To address trustworthiness, I kept detailed notes, listed action steps, and recorded reflexive thoughts throughout the research process (Aiken et al., 2011). The data were then analyzed in two phases, and the organizational matrix was member checked by two parent participants.
Phase 1
I used inductive content analysis to identify meaningful units and establish codes through in vivo and process coding methods (Graneheim & Lundman, 2004; Miles et al., 2014; Rezaee et al., 2014). Cross-case analysis was then performed using the first transcript’s initial codes and four preliminary themes. Caution was taken in cross-case analysis; initial themes were considered as suggestions of important variables, not silos within which the rest of the data could be forced. A fifth theme emerged and was compared against the first transcript for consistency and accuracy of application (Gibbs, 2007). For verification, an external researcher skilled in qualitative data analysis reviewed the categorization of data extracts, renaming of groups, and thematic analysis.
Phase 2
An organizational matrix (Matuska & Erickson, 2008; Miles et al., 2014) was used to compare thematic findings with definitions of parent occupations, infant occupations, and parent–infant co-occupations. For this study, parents were identified as the authors and most accurate interpreters of their own occupations (Pierce, 2014). Parent occupations were defined as the personally constructed, richly symbolic, deeply meaningful, socially influenced, and goal-directed activities of caring for a child. Much more than a set of mundane, concrete actions or externally observable behaviors, occupations included roles and were defined by parents as “extraordinarily ordinary moments” (Price & Miner, 2009, p. 72).
Infant occupations were contextually situated and included the tasks and activities valued and expected by the family (Vergara & Bigsby, 2004). Previously explored examples of independent infant occupations include elicitation of nurturing and caregiving, communicating, searching, regulating, protecting, developing, and self-regulating (Olson, 2004).
Parent–infant co-occupations were distinguished from parallel or shared occupations (Pierce, 2003; Zemke & Clark, 1996) and described as highly interdependent, reciprocal relationships, in which the “occupations of two or more individuals are interactively shaping each other” (Pierce, 2009, p. 204) and “one person’s response directly influences the response of the other” (Pickens & Pizur-Barnekow, 2009, p. 151).
The organizational matrix is provided in Table 1. The a priori definitions are shown in the column headings, and the emergent themes are presented in the first column. The table cells catalog the parents’ responses to the primary interview thread, “What do you do” and “What does your infant do” while in the NICU?
Thematic Matrix With Resultant Occupations: What Parents and Infants Do in the NICU
Note. NICU = neonatal intensive care unit.
Phase 1 Analysis
Fourteen parents (mean age = 29.7 yr; range = 19–37 yr) volunteered for the study. Recruitment continued until saturation was reached; all participants were interviewed at the bedside. None had infants who were direct clients of mine. Most were Caucasian (n = 13; 93%); 1 (7%) was Native American. Ten mothers and 4 fathers (4 couples, 6 single individuals) participated. Sixty-four percent (n = 9) of the participants were first-time parents. The average infant gestational age was about 34 wk (range = 25–40 wk). Infants were about 11 days old at the time of the interview (range = 2–42 days); acuteness ranged from critically ill to discharging home.
Five themes describing active occupational engagement emerged after Phase 1 data interpretation: (1) perceiving “they” versus “I”; (2) maintaining proximity; (3) expressing emotions, values, and beliefs; (4) addressing health issues; and (5) analyzing. Each theme served as a global descriptor of parent and infant experience and represented key aspects of the phenomenon of parent and infant occupational performance in the NICU.
Perceiving “They” Versus “I”
This predominant theme represented how parents and infants used their time to reconcile distinct professional and familial caregiver groups and roles in the NICU. Three subthemes emerged: Parents provided (1) positive examples (those representing accepted or appreciated differences between groups), (2) “it depends” examples (those that, according to 1 father, could be perceived as positive or negative depending on the context and timing of the interaction), and (3) negative examples (those representing opposition or resistance felt between groups).
Positive Examples
One mother, Dee, spoke positively of the relationship with professional caregivers and stated, “Even though I know they’re the ones taking care of him now—I’m just helping a little bit—I really enjoy being able to do everything that I’m told I can.” Olivia mentioned, “They give you the option . . . they give you the choice.”
“It Depends” Examples
Although oversight from neonatal caregivers was often described as comforting, Bobby discussed how difficult public and shared parenting can be: “I like the fact they pay so much attention . . . but at the same time I hate that it exists.” Cathy reiterated this sentiment and stated, “They teach you a whole lot. . . . I know they’re going to stare and observe me, but it makes me nervous, makes me feel like, ‘I’m going to mess up a couple times, if you could please not watch me?’”
Negative Examples
Parents commented on the perceived gap between “they” and “I” and gave examples of barriers to parenting in the NICU. “It seems like we can’t do everything we want to do . . . you know, we play by the rules. And we do exactly as we’re told because it’s ‘better for the babies’” (Bobby). “My biggest fear is being hotlined . . . I don’t like walking around on eggshells” (Ali).
I just have to keep my mouth shut. And you don’t know—like, should I say something about that . . . or do I not? [It’s] just so up and down . . . I don’t want to be one of “those” parents, where they dread [you] coming in here. I feel like I’ve been branded with a scarlet letter P. (Heather)
Maintaining Proximity
This second theme of occupational engagement reflected emergent parental statements about the importance of achieving and maintaining physical closeness to the infant. One mother, Kelly, repeatedly expressed her need to “get him close. I just want to hold him. . . . Get him close.” Within this theme, four subthemes emerged to categorize parent participatory activities: (1) “the little things,” (2) hands-on NICU caregiving, (3) temporal considerations, and (4) addressing interrupted proximity.
“The Little Things”
Parents repeatedly used the phrase “it’s the little things” (Heather) when referring to seemingly insignificant interactions with their infant while at the bedside. “The fact that he got to go over and pick him up and change his diaper . . . it felt like he was actually playing a part. Little things like that mean a lot” (Ali). “Taking their temperature, changing their diapers, little things. Even . . . lifting him up so I can put a new blanket under him, just little things like that” (Bobby). “We sit and stare . . . like an owl on a limb” (Ali).
Hands-On NICU Caregiving
Parents differentiated between assisting with medical caregiving and “normal” caregiving (Greg). Nan said, “I like to touch her. And put a little bow on her—make her feel fancy.”
I’ve cleaned his mouth a couple times. They seem to do such a thorough job, I don’t want to do that all the time . . . [but] I still try to put my hands on him . . . I’ll do whatever, besides the obvious, like diaper and temperature [and] baths. Before they got him on the pump feedings, I would “feed” him. I’m not sure what you’d call it—inject the feeding? Was I injecting his food in the little syringe? It sounds weird to say that. (Dee)
Temporal Considerations
Parents also attempted to balance time spent in proximity to their hospitalized infant with other routine aspects of their personal and family lives. “We knew we weren’t gonna get to hold her right away. . . . It’s January—she wasn’t supposed to be here until March. She’s got plans, I guess” (Heather).
We’re still trying to adjust to the schedule and figure out what works for us, as far as being here. I’m probably going to go back to work . . . so I can take my maternity leave when she comes home. When I can actually be a mom to her then. (Nan)
Addressing Interrupted Proximity
Parents frequently verbalized strategies to address interrupted proximity to their infant. “The first night . . . it was really hard to leave her by herself . . . God knows anything might happen . . . we got home and called up here twice to make sure she was okay. It’s been a roller coaster” (Heather). To cope with separation, one mother, Ali, stated, “I study their reactions, their facial expressions. I take pictures while they’re sleeping.”
Expressing Emotions, Values, and Beliefs
This third theme of occupational engagement reflects actions parents took to address their perceptions, motivations, personally held truths, purposes, and emotions experienced in the NICU. As with the first theme, parents provided examples of engagement dependent on contextual and environmental variables.
Positive Examples
Despite having times when she felt overwhelmed, Jewell stated, “I think I can really do this [parenting]. I really do.” Olivia demonstrated resiliency, stating, “This is not what I planned at all. But I’m ready to be home with her. I am ready.”
“It Depends” Examples
Many parents spoke to the importance of professional caregivers recognizing “firsts” in the parents’ and infant’s life (Floyd), and several discussed their emotional responses to firsts. Some spoke with excitement about an infant first; others spoke regretfully or sadly.
I remember when I was just starting to pump, and we got the first drop. (Greg: I ran it down here from her hospital room!) When you change that first diaper, and it’s like “Oh, I got this! I can take care of a baby.” It makes you feel confident. We didn’t get that first initial bond, right as she came out. . . . She was born and put in a bed. (Heather)
In addition to discussing bittersweet firsts, parents often used the phrase “We know it’s for the best, but” (Greg), signaling inner conflict and referring to limited participation. Olivia’s occupations included advocating for her baby amid reconciling her emotions:
They’re like, “We’re gonna do this IV.” Well, I don’t want my baby poked. You know? But it’s like, at the same time, do you want them to not do it and go home, and end up back here for however many months? I don’t want that either. So, for the greater good, I’m going to let you poke my baby.
Negative Examples
Parents discussed episodes of grief, frustration, anger, emptiness, paranoia, and exhaustion—all variables affecting their engagement in caregiving and occupational performance. “As a first-time mom, you’re like, am I just overreacting about everything? I think I’m overreacting . . . emotionally I’m drained” (Olivia).
Addressing Health Issues
This fourth theme of occupational engagement reflected parents’ attempts to manage their physical, emotional, and psychological well-being. Parents expanded on this concept, discussing the need to address their own health while at the same time influencing their infant’s health (to the extent to which they were capable). “We spend about 16 hours a day [at the bedside]. I’ve backed off a little so I can rest. . . . When I have an hour, it’s usually spent sleeping or eating” (Elsa). “I’m still in recovery mode, so I try not to overdo it and push my body too much. You have to get rest” (Jewell).
Analyzing
The final theme of analyzing emerged from the parent narratives as they discussed activities undertaken to methodically study interactions with their infant. Three subthemes were identified: (1) analysis of the infant, (2) analysis of previous experience, and (3) analysis of others.
Analysis of the Infant
Parents reported spending most of their time interpreting their infant’s behaviors and the meanings behind those behaviors. “I think they’re trying to figure out who’s going to be the constant in their life, like who are my mommy and daddy?” (Bobby). “The most amazing thing with both my children is that they recognize my voice. And they look for you . . . they even recognize dad’s voice. So, that’s pretty amazing” (Elsa).
I hope he can tell me apart; like I said, that’s one of the reasons I try to talk to him when I’m leaving out or going in. . . . I’ll tell him I’ll be right back and he’ll always turn toward me and his eyes open a little bit. (Dee)
Analysis of Previous Experience
Many parents reflected on previous experience with other children and previous hospital admissions. They also compared status at the beginning of their admission with their present status. “This has been an easier stay, for me, compared to the first time because I knew what was going on . . . it made it less emotional” (Floyd).
As an experienced mother, you know, you’re more comfortable with what you can do with a baby than someone who doesn’t have any children. . . . I guess I had to kinda go through that again, feeling comfortable doing things with him because he looked and is so much more easily broken than term ones. (Dee)
Analysis of Others
NICU parents also engaged in interpretation and analysis of others’ actions, verbal communication, and nonverbal communication. They perceived their infant analyzed these features as well. “He’s focusing on us—looking at us” (Major). “I’m the type of person, or mother, that is . . . [if] you come in and do something, you need to explain to me what you’re doing. Or why you’re doing it. It doesn’t have to be detailed” (Heather).
Matrix Organization: Phase 2 Analysis
A matrix framework was then used to organize and compare study-derived themes with a priori definitions of parent occupations, infant occupations, and parent–infant co-occupation. Examples of parent-identified occupations and co-occupations in the NICU setting appeared at matrix intersections (see Table 1); these intersections represented examples of what parents and infants do in the NICU. For example, at the intersection of parent occupations and the theme perceiving “They” versus “I,” 1 parent described having sole responsibility for maintaining her child’s bed space, which she greatly enjoyed.
Discussion
Occupation is multifaceted and complex, and defining occupation or occupational performance in the NICU setting is challenging. Even more challenging is attempting to explicate how neonatal occupational therapists provide occupation-based care in this highly technical and specialized environment.
For participants in this study, NICU-based occupational performance took many forms. It represented the pursuit of meaningful engagement and included not only the execution of directly observable caregiving activities and tasks, but involvement in “extraordinarily ordinary” (Price & Miner, 2009, p. 72) and often unseen events that extended over time. Surprisingly, the clear majority of parenting activities discussed were unseen, yet extremely powerful and purposeful, actions at their child’s bedside. Erlandsson and Eklund (2001) described these types of occupations as “hidden” or “unexpected” occupations (p. 31), stating that occupational therapists should look beyond traditional occupations to recognize “small islands within the [occupational] pattern” (p. 35). Although some authors have stated that occupations contain observable action components (AOTA, 2014; Polatajko et al., 2004), others have defined occupation as something beyond the observable process of doing—one that includes the subtleties of being and becoming:
Being encapsulates such notions as nature and essence, about being true to ourselves, to our individual capacities and in all that we do. Becoming adds to the idea of being a sense of future and holds the notions of transformation and self-actualization. . . . Occupational therapists are in the business of helping people to transform their lives through enabling them to do and to be and through the process of becoming. (Wilcock, 1999, p. 1)
The findings from this study are consistent with the latter thought, suggesting that parent occupations, infant occupations, and parent–infant co-occupations are delicately layered (Hasselkus, 2006; Price & Miner, 2007, 2009) and made up of much more than a list of outwardly observable activities such as oral feeding, socializing, basic caregiving, and holding. Accordingly, parenting occupations such as decision making, dreaming, grieving, habit changing, interpreting behavior (and other being, becoming, and belonging occupations; Wilcock & Townsend, 2014) may be unintentionally overlooked by occupational therapists in the effort to support hands-on or directly observable activities and caregiving.
Parents perceived intentional and self-directed (yet often subtle) infant occupations. Learning, tolerating, parent seeking, responding, recovering, relaxing, and sleeping were just some of the activities in which parents believed their infant actively participated. Examples support the definition of infant occupations offered by Vergara and Bigsby (2004), in which infant occupations are defined as any valued task or activity in which the family or NICU culture expects the infant to engage.
Parents also provided examples of co-occupation, or meaningful and synactive parent–infant interaction. The examples strengthen the definition of co-occupation and add layers to the construct, suggesting that beyond co-occupation’s reflective and reciprocal doing nature lies a host of interdependent being and becoming occupations (Price & Miner, 2007, 2009) that may be unseen yet essential to family existence and role performance.
Each NICU-based occupation and co-occupation was organized within one of five emergent themes of active engagement identified during qualitative analysis of parent interviews. Themes reflected previously published literature on barriers to and supports of parenting in the NICU, parent and infant coping strategies, family development, effects of parent and infant health on participation in caregiving, psychological and emotional stressors in the NICU setting, neurobehavioral observation, and acclimatization to the NICU culture.
The number of occupations and co-occupations that fell under the theme perceiving “they” versus “I” was surprising. This finding resonated with previously published literature summoning postcolonialist critical theory, which is concerned with ideas of equity and social justice, when evaluating patterns of group dominance, as well as the effects of inclusion and exclusion on recipients of health care services (Albersheim et al., 2010; Gibbs et al., 2015; Hall et al., 2012). Likewise, the concept of othering in health care, defined as the perception of distance from the dominant medical group and identification as a caregiving other, was apparent in parent interviews (Johnson et al., 2004, p. 263). Accordingly, neonatal therapists must consider their roles as collaborators in the infant’s care and frequent liaisons between the groups and act as instruments of social change in the NICU environment. This type of exemplary care was demonstrated by an occupational therapist who used a strong therapeutic relationship to embolden a mother and facilitate parenting expertise within the constraints of the NICU (Price & Miner, 2009).
This study suggests that neonatal occupational therapists can practice in a way that honors Reilly’s (1962) call to return to holistic intervention rooted in occupation. When asked what they and their infant do in the NICU, parents described five broad categories (themes) of occupational performance. Several examples of occupation within the categories were observable or demonstrable, but many were unseen, future-focused meaningful activities that parents engaged in to fulfill roles, maintain quality of life, and shape family life. With increased awareness of both observable and unobservable doing, being, and becoming types of parent occupations, infant occupations, and parent–infant co-occupations, therapists can embrace the unique role of neonatal occupational therapy in the lives of both parents and infants in the NICU setting.
Study Limitations and Future Implications
Transferability may be limited by the unique NICU design. Single-family rooms and an in-hospital Ronald McDonald House (https://www.rmhc.org/) afforded parents the ability to stay overnight at their infant’s bedside or in the hospital proper at no additional cost. Family-friendly NICU policies and procedures may have shaped parents’ perception of participation. Parent responses may not have captured the perceived barriers to participation experienced in units that are more restrictive. Parents may have recognized me as a hospital employee, which could have affected their objectivity. Conducting parent interviews across NICU designs, in multiple settings, and with increasingly diverse populations would add richness to definitions of NICU-based occupation and co-occupation.
Implications for Occupational Therapy Practice
Uniquely poised to be liaisons between professional and familial caregivers, neonatal occupational therapists can help parents build confidence as experts in advocacy and caregiving through participation in parent-identified occupations and co-occupations:
Parents described five broad categories or themes of NICU-based occupation and co-occupation that may be valuable to therapists seeking to strengthen the occupational focus of neonatal intervention.
Neonatal therapists may need to advocate for service provision policy change to fully address the observable and nonobservable doing, being, and becoming occupational and co-occupational needs of parents and infants.
Neonatal therapists can contribute to family well-being through assessment and intervention aimed at reducing power differentials and optimizing occupational equity.
Neonatal therapists may consider documenting in a way that clearly reflects occupation-based practice in the NICU, for example, “In support of [parent occupation, infant occupation, or parent–infant co-occupation], the following recommendations are made.”
Conclusion
Family life exists in the NICU; beyond observable interactions, it is patterned with myriad doing, being, and becoming occupations. Recognition of occupation’s expansiveness is key in neonatal practice. With an updated and expansive view of NICU-based parenting occupations, infant occupations, and parent–infant co-occupations, neonatal therapists can redefine occupation-based practice in this highly complex environment.
Footnotes
Acknowledgments
I am grateful to the families who shared their narratives and spoke for their infants as part of this research. I am thankful for Julie Bass, Kate Barrett, and Kathleen Matuska (St. Catherine University), who provided expert mentorship and encouragement throughout each phase of the research. I am also thankful for Jennifer Pitonyak (University of Puget Sound) and Doris Pierce (Eastern Kentucky University), who challenged me to think deeply about the meaning and value of occupation in this highly complex population.