Read the attached article titled An_Ethnography_of_Parents__Perceptions_of_Patient.12.pdf and share your thoughts about the parent as a patient care advocate. What lessons can be gl

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Original Research

500 Advances in Neonatal Care • Vol. 19, No. 6 • pp. 500–508

DOI: 10.1097/ANC.0000000000000657

Author Affiliations: Department of Research, Cizik School of Nursing, The University of Texas Health Science Center at Houston (Drs Ottosen and Engebretson); Senior Biobehavioral Scientist, RAND Corporation, Santa Monica, California (Dr Etchegaray); Department of Neonatology, McGovern Medical School, The University of Texas Health Science Center at Houston (Dr Arnold); and Department of Internal Medicine, The University of Texas-Memorial Hermann Center for Healthcare Quality and Safety, McGovern Medical School,The University of Texas Health Science Center at Houston (Dr Thomas). This research was supported in part through a grant from the Agency for Healthcare Research and Quality, R03HS022944, Parent perceptions in NICU safety culture: Parent-Centered Safety Culture Tool, and a grant from the Agency for Healthcare Research and Quality, 1P30HS024459- 01, caregiver innovations to reduce harm in neonatal intensive care. No conflicts of interest exist for any of the coauthors. Supplemental digital content is available for this article. Direct URL cita- tion appears in the printed text and is provided in the HTML and PDF versions of this article on the journal’s Web site (www.advancesinneo- natalcare.org). Correspondence: Madelene J. Ottosen, PhD, MSN, RN, Cizik School of Nursing, The University of Texas Health Science Center at Houston, 6901 Bertner Ave, Ste #567E, Houston, TX 77030 ( [email protected] ). Copyright © 2019 by The National Association of Neonatal Nurses

ABSTRACT Background: Parents of neonates are integral components of patient safety in the neonatal intensive care unit (NICU), yet their views are often not considered. By understanding how parents perceive patient safety in the NICU, clinicians can identify appropriate parent-centered strategies to involve them in promoting safe care for their infants. Purpose: To determine how parents of neonates conceptualize patient safety in the NICU. Methods: We conducted qualitative interviews with 22 English-speaking parents of neonates from the NICU and obser- vations of various parent interactions within the NICU over several months. Data were analyzed using thematic content analysis. Findings were critically reviewed through peer debriefing. Findings: Parents perceived safe care through their observations of clinicians being present, intentional, and respectful when adhering to safety practices, interacting with their infant, and communicating with parents in the NICU. They described partnering with clinicians to promote safe care for their infants and factors impacting that partnership. We cultivated a conceptual model highlighting how parent-clinician partnerships can be a core element to promoting NICU patient safety. Implications for Practice: Parents’ observations of clinician behavior affect their perceptions of safe care for their infants. Assessing what parents observe can be essential to building a partnership of trust between clinicians and parents and promoting safer care in the NICU. Implications for Research: Uncertainty remains about how to measure parent perceptions of safe care, the level at which the clinician-parent partnership affects patient safety, and whether parents’ presence and involvement with their infants in the NICU improve patient safety. Key Words: neonatal intensive care , parent engagement , parent roles , partnership , patient safety

An Ethnography of Parents’ Perceptions of Patient Safety in the Neonatal Intensive Care Unit

Madelene J. Ottosen , PhD, MSN, RN ; Joan Engebretson , DrPH, AHN-BC, RN, FAAN ; Jason Etchegaray , PhD ; Cody Arnold , MD, MS ; Eric J. Thomas , MD, MPH

BACKGROUND AND SIGNIFICANCE

The unique complexities of the neonatal intensive care unit (NICU) environment can pose threats to

Donna Dowling, PhD, RN, and Shelley Thibeau, PhD, RNC-NIC ❍ Section Editors

patient safety. 1 , 2 Medical errors, adverse events, and preventable harms are higher in neonates than full-term infants involving as many as 74 events per 100 hospitalized infants within NICUs. 2 , 3 Strategies to address these errors in the NICU include team- work and leadership training, improved order- entry processes for providers, and development of reliable measures evaluating the culture of patient safety. 1 , 2 Building and evaluating a culture of patient safety involve understanding the shared knowledge, attitudes, perceptions, behaviors, and beliefs of the individuals and groups within an organization. 4 Assessments of these dimensions are often obtained solely from clinicians and staff members of the healthcare team. 5 Within the NICU, parents constitute an integral component of patient safety culture, yet their views are often not considered.

Increasingly, healthcare systems are involving patients and families as partners, not just recipients of healthcare. 6 Parents’ and caregivers’ values and beliefs sometimes differ from those of clinicians regarding the care of infants in the NICU 7 ; thus, engaging as partners with the healthcare team can be challenging for parents. Parents often struggle

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with anxiety, stress, depression, confusion, and dif- ficulty coping, and sometimes hide behind feelings of uncertainty. 8 , 9 While parents desire to be involved in their infants’ care, they are often unsure how to be effective parents in the NICU environment. 8 By gaining a better understanding of how parents experience the culture of the NICU, providers can identify appropriate parent-centered strategies to involve them as partners in care. Similarly, deter- mining parents’ perceptions about patient safety can help healthcare providers understand how to engage them in safety promotion activities that par- ents find meaningful and appropriate. Patient safety is defined as “the freedom from accidental or pre- ventable injury produced by healthcare as well as the practices that create a safe environment of care.” 10 The Agency for Healthcare Research and Quality identified a major gap in understanding how patients and families want to be engaged in patient safety and cited the need for patient and family input in assessing patient safety within healthcare environments. 11 Therefore, understand- ing how parents of neonates perceive patient safety and how they conceptualize their role in supporting patient safety in the NICU is both timely and neces- sary. The aims of this study were to determine how parents of neonates conceptualize patient safety within the NICU and how they perceive their roles in contributing to the safe care of their infants in the NICU. The purpose of this article is to describe a conceptual model derived from the findings that depicts the how parents conceptualize patient safety and how they see their role as safety advocates in the NICU setting.

behaviors within an environment. 12 , 13 This method is particularly important in understanding the rela- tionship between differing “cultural systems,” such as clinicians and patients. 12-15

Setting This study was conducted in a 128-bed level IV NICU within a large academic hospital in Texas that serves as a regional neonatal care center for high- risk neonates, admitting 1200 infants annually, and is staffed by more than 350 specialty clinicians, including physicians, nurses, respiratory therapists, nutritionists, and pharmacists. The NICU comprises 2 distinct units, a level III-IV unit with 8 open pods of 8 to 10 infant beds on 1 floor and a level II unit with 6 pods of 8 private rooms on the floor above.

Procedures The study was approved by The University of Texas Health Science Center at Houston Committee for the Protection of Human Subjects. Participants received a copy of the signed consent document and a $50 gift card for participating. We obtained a pur- posive sampling of participants and field observa- tions representing NICU cultural norms, environ- ment, and participant characteristics. 15-17 Field observations were conducted across day and night shifts, on weekdays, and weekends to witness parent interactions during rounds, with clinicians, while at their infant’s bedside, and during educational ses- sions. Participants were identified during field obser- vations and in consultation with nurse clinicians who identified parents who were present in the NICU regularly and comfortable speaking up about issues with their infants. Parents were invited to par- ticipate while they were in the NICU by the lead author who described the purpose, procedures, risks and benefits, and voluntary nature of study partici- pation. If they agreed, parents were given the option of when and where they would like to be interviewed and whether they preferred to be interviewed one- on-one, with their partner, or with another parent. Most parents chose to be interviewed with their partner in a separate conference room adjacent to the NICU.

Sampling Selection Parents were purposively selected to match the age, ethnicity, parity, and infant’s gestational age repre- sentative of the parents in the NICU. Parents were eligible to participate if their primary language was English and if their infants were considered stable and had been in the NICU for at least 3 weeks. Three parents of infants who graduated from the NICU 2 years prior agreed to participate as a NICU parent advisory board. These parents participated in a group interview for this study and provided feed- back on the development of the interview guide.

What This Study Adds • Parents as partners of NICU patient safety conceptual

model. • Identified patient safety behaviors important to par-

ents of neonates in the NICU including how clinicians adhere to safety practices, communicate with parents about their infants, and interact with infants in the NICU.

• Caregiver presence, intention, and respect are key concepts in building parent-clinician partnerships.

METHODS

Design Using a medically focused ethnographic approach, 12 we conducted interviews and field observations to understand NICU parents’ views and practices related to patient safety. Ethnography involves the study of culture or the beliefs, values, behaviors, and language of a group of people to understand how they assign meaning to the cultural norms and

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502 Ottosen et al

Participants were enrolled until saturation in the depth and breadth of the interview content was reached, as evidenced by redundancy in the thematic content of responses. 17 , 18

Field Observations Concurrent with the interview period (January to November 2014), field observations in the NICU were conducted across all shifts and days to observe encounters of parents interacting and communicat- ing with their infants, their families, NICU clinicians, and other parents, and NICU staff interacting and communicating with and about parents and families of neonatal infants. These observations included any parent or staff interaction not just of the participants involved in interviews. Notes of field observations and informal conversations were collected by lead author and provided relevant contextual informa- tion and exemplars that were used during data col- lection and incorporated into the analysis. 19

Interviews Parents chose to be interviewed one-on-one, with their partner, or in a group with 1 to 2 other parents. Interviews were conducted with parents in the NICU by lead author using a semistructured interview guide (see Supplemental Digital Content Appendix A, available at: http://links.lww.com/ANC/A51 ) developed in consultation with the other coauthors to address the themes and topics of interest. Three NICU clinicians (2 neonatologists and 1 neonatal nursing director) and the NICU parent advisory board reviewed the interview guide to ensure that the questions were clinically relevant and in lan- guage comfortable to parents. During this process, parents stated that the term “safe care” was prefer- able to the term “patient safety,” so it was used in the interviews. Interview questions were open-ended and asked parents to describe their overall experi- ence in the NICU, their perceptions of their interac- tion and communications with the NICU team, their involvement as parents in the NICU, and how they view overall safety in the NICU. Interviews were digitally recorded, transcribed into Word docu- ments, and downloaded to a secure password-pro- tected network drive along with field notes.

Data Analysis Analysis involved organizing, connecting, and cor- roborating or legitimating the data in an iterative process that culminated in an accurate representa- tion of the participants’ accounts. 19-21 Throughout data collection, we verified and clarified the inter- pretations of the participants’ comments and behaviors during interviews and informal conver- sations. We analyzed transcripts of interviews and field notes using a qualitative data management system, ATLAS.ti software GmbH (v. 7; Berlin,

TABLE 1. Demographics of Parent Informants (N = 22) Category n (%)

Gender

Female 18 (82%)

Male 4 (18%)

Marital status

Married 15 (68%)

Single 7 (32%)

Age, y

18-30 10 (45%)

31-45 12 (55%)

Race

African American 9 (41%)

Hispanic 6 (27%)

White 3 (14%)

Asian/Pacific Islander 2 (9%)

Other 2 (9%)

Parity of mother (n = 18) a

1 live birth 11 (61%) a

2 live births 7 (38%) a

4 live births 1 (0.10%) a

Mean ( Range )

Infant’s gestational age at birth, wk 27.3 (22-37)

Infant’s length of stay at interview, d 105 (21-365)

a Based on number of deliveries represented n = 18

Germany), in which we applied codes to quota- tions, phrases, and observations to represent the meaning expressed. Codes are “short phrases or words which assign summative, salient, essence- capturing attributes for a portion of language- based or visual data.” 21 The lead author initially coded the data and reviewed the codes with 2 coau- thors to reach consensus on interpreted findings. Thematic results and exemplars were presented by lead author at a peer debriefing of 4 nurse col- leagues with NICU and/or qualitative experience to validate the congruency and clarity of the data sup- porting the findings. 13

RESULTS

More than 150 hours of observations and informal conversations with parents of neonates and clinical staff were conducted in the NICU in addition to individual or group interviews with 22 parents of NICU infants. Three parents declined interviews due to time constraints. Parent participants reflected the diversity and overall demographics of parents in this NICU ( Table 1 ).

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Parents as Partners With Clinicians to Promote Safe Care Central to parents’ perceptions of safety was their desire to feel engaged with clinicians in promoting safe care for their infants. Their perception of engagement was precipitated by clinicians being present, intentional, and respectful while communi- cating with them, interacting with their infant, and adhering to practices of safe care in the NICU. Pres- ence was described by parents as having clinicians especially bedside nurses watching the infants and aware of their needs,

the fact that they’re very responsive and very aware and observant. Those are all things that make you feel comfortable and That made me feel good, but even though the nurses are in charge of other babies, they’re still always looking out to see what they can do and what, how they can help.

Intentional was described as focused attention in performing duties, “The ones (nurses) that have true passion are the ones… that stay focused on what they’re doing. Finish that up before they try to do anything else.” Respect was described as being treated as important, listening to parents’ concerns, and responding to them, “For me it was more of him (doctor) stopping, taking the time, not acting rushed or like he had more important things to do. He genu- inely seemed concerned and genuinely wanted to answer our questions.”

Parents of neonates in our study recognized spe- cific parenting roles for protecting their infants,

which they believed they shared with clinicians. From the data, these roles were described as Care- giver, Guardian, Advocate, Decision maker, and Learner. Definitions and exemplars for each role are listed in Table 2 . Parents were aware that clinicians were primarily responsible for these roles during the initial phases of their infant’s care in the NICU. However, as a strong partnership between clinicians and parents formed and their infants progressed, these parents recognized their need to assume more responsibility to protect and care for their infant. As 1 mother of a very preterm infant stated,

I’m the mom. I have to take care of the baby. Just like, if you have kids, they don’t necessarily have to be in the NICU, but if something’s wrong, you’re going to fi x it, or at least try. And so that’s the same situation … we have to look at it, not—like, these are profes- sionals and I have to take a backseat to what they say. You know, because at the end of the day, this is your child and so you have to just treat it that way.

Parents required varying degrees of time and sup- port to gain confidence in these roles. One mother sought the help of a counselor to help her cope with her parental role in the NICU,

At the beginning, it’s surreal … you never know the NICU until you actually live in it. And then over- time, it becomes—it’s familiar. And so I think the best thing is for them (parents of neonates) to be involved. And like my counselor told me to be an advocate. Like, stay involved and know everything that’s going on, and everything that’s happening.

TABLE 2. Definitions and Exemplars of Parent Roles to Promote Safe Care Role Definition Exemplar

Advocate Speak up for my infant’s needs to the healthcare team in the NICU.

“It definitely is frustrating when a nurse is trying to tell you something different. And I’m trying to educate you about my baby so I can leave and be comfortable.”

Caregiver Recognize and provide the activities of care that my infant needs.

“Once they get into the crib, there are certain milestones that they have to hit before we take them upstairs. And then we’ll get a chance to interact with the babies a little bit more, get used to being around them and identifying what their needs are . So when we get them home it’ll be, you know, easier.”

Decision maker Help make decisions about my infant’s care.

“(Mom was told) We’re gonna go through the weekend and if it’s still bad by Monday, we’ll give her the medicine.” And my thing was why? Why are we waiting until Monday? It’s not like it’s going to change. This is something you already know, so let’s just be proactive. So I don’t want to wait until Monday .

Guardian Protect my infant from uncertain harms and ensure he or she is in a safe environment.

“ You (as the mom) want to know who’s coming in the room, who’s going to touch him, or if somebody’s looking at him, like who are you? Who you with?”

Learner Learn how to provide individualized care for my infant’s needs.

“ My responsibilities while I’m in here, basically just to try my best to know her needs . So when I go home, her needs—her concern—what to look for—what not to look for …. I tell nurses all the time, What you tell me (about my baby) is gold .”

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504 Ottosen et al

Contributing Factors to Parent-Clinician Partnership Several individual and unit “contributing factors” (see Figure 1 ) emerged throughout the data that influ- enced the partnerships between parents and clinicians in promoting safe care. Examples of individual factors affecting parent participation in the NICU included their emotional recovery from delivery, having other children at home, and having to return to work. One mother, who lives 8 hours from the NICU, states, “just being separated from my husband…. It’s a lot of issues, I guess, and factors for me, you know, being a parent of a child in the NICU.” Individual factors impacting clinician participation with parents involved clinician attitudes about and toward the par- ents’ role in the NICU. A parent, struggling with depression because of the multiple surgical procedures of her extremely low birth-weight infant, felt over- whelmed by seeing her infant in the NICU. She called the unit for an update and overheard the nurse say,

the mom is right here at (one of the parent rooms). I don’t understand why she doesn’t just come over here and check on her and…this poor girl (infant), they only come in and see her for, like, fi ve minutes and they leave.

Unfortunately, overhearing these words left this mother feeling more distressed and less willing to engage with her clinicians.

Unit factors also impact the parent-clinician part- nership such as the transitions in care that occur with rotating clinicians and movement of infants within the unit, varying communication practices used by clinicians, and the type of teamwork among clinicians. These factors influence the formation of the clinician-parent partnership, parents’ percep- tions of clinicians’ safety promotion behaviors, and parents’ adoption of roles to promote safe care throughout the NICU experience.

Parent-Perceived Safety Behaviors Exhibited by NICU Staff These parents perceived their infant’s care as safe when observing NICU clinicians performing 3 types of behaviors: (1) adherence to safety and infection control practices, (2) interactions with their infant, and (3) communication with parents. Parents described the importance of clinicians/staff who were present to them and their infants, intentional in their actions, and respectful toward parents and infants while performing these behaviors.

FIGURE 1

Conceptual model of parents as partners in NICU patient safety. Parents of neonates per- ceive patient safety as a partnership with NICU clinicians expressed by the presence, inten- tion, and respect to carry out safety behaviors. The parent-clinician partnership is influ- enced by several contributing factors and is an integral component to the ability of parents to assume their roles to promote safe care. NICU indicates neonatal intensive care unit.

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Adherence to Safety Practices When asked about patient safety in the NICU, parents first described the security procedures to enter the unit. Having someone present at the front desk at all times strictly adhering to visitation policies assured parents that their infant was safe when they left the NICU. Being able to authorize the persons who were allowed to see their infant in the NICU gave parents added feelings of security, as 1 parent expressed, “Because you hear so much on the news nowadays where people come in and try to take babies … when I leave here, I feel safe and secure that (baby) is secure.”

Parents were comforted when observing clinicians intently following safety procedures and routines that stressed infection control, such as handwashing, using bedside hand sanitizers, wearing gloves during procedures, keeping the environment and equipment clean around the infants, and making sure that visi- tors—including the parents themselves—were free from illness. Even rules about who could visit were important to parents, one of whom noted, “They eliminated multiple visitors for a little bit here when- ever the RSV (Respiratory Syncytial Virus) and all that stuff was going around real bad …. Yes, that did make me feel safe and feel better.”

Conversely, parents felt that safety was threatened when they witnessed unit practices that seemed incongruent with infection control procedures. A parent described her concern over a new infant admitted to the middle of the NICU pod. Red tape had been placed on the floor in a 3- to 4-ft perimeter around the infant’s isolette. While respecting another family’s right to privacy about their infant’s condi- tion, a parent of an infant in the same pod of the NICU expressed uncertainty whether the safety measures taken would adequately protect her infant:

They have like the biohazard things you put stuff in, this and … all kinds of little stuff so I’m just thinking like if they have all of that, then that baby shouldn’t be in the middle…of the (other) kids.

Interactions With Infants Most parents also described safe care as the presence of a nurse watching over their infant, quickly and intentionally responding to emergent needs, and respectfully interacting with their infant as a parent would interact (ie, in the same manner as that exhib- ited by a parent). One parent reflected,

They still keep a close eye on him even when I’m there with him …. And because they know the baby very well … it’s like me being there. And so they told the doctors, ‘Well, I don’t think he likes this’ and stuff like that. And it’s the same thing I think.

Parents felt safe knowing that nurses were physi- cally present in the unit, near their infant, to respond to their physical and comfort needs, especially when they could not be in the unit. Most parents could

give examples of when nurses responded quickly to emergencies with their infant or other infants in the NICU. They felt confident when clinicians calmly responded to emergencies and worked as a team, often surprised at the number of clinicians respond- ing to assist. Parents were sensitive to the intention of the nurse when interacting with their infant. It was important to parents to see nurses respond to alarms after having looked at their infant first and not just silencing alarms. One parent noted,

I’ve seen them … if the heart rate is going up or down, they’ll stand … there for a while and see if it will change. And if not, then they’ll go in and stimu- late the baby …. I mean, just like that example of my son. He was already extubated. But if the nurse had not paid attention to his desatting and just turned him up and didn’t hear him—he was crying—he had a voice—she would not be able to intervene in time .

Seeing nurses interacting with their infants in a personal way by talking to them, patting them, and treating them like their own infants made parents feel safe. This parent described, “I love that they talk to him and not just go in there and startle him and then just do what they have to do. He’s a little person, okay?” Another parent stated, “Even though he was in the hospital and those nurses (were) paid to take good care of those babies, I felt like, there is another mom for him there that was not me … I love that.”

When asked about issues of unsafe care, many parents found it difficult to relay any negative issues and instead responded with compliments for the care their infants received in the NICU. A few parents stated that they “never felt unsafe” or “saw anything that made (them) question the safety of (their) child.” Parents felt that their infants were safer with the nurses they had developed a relationship with or chosen to be primary nurses for their infant. After being in the NICU for several weeks, parents learned from the staff that they could choose the nurse(s) they were most comfortable with to be the pr