Nurses’ Views of Factors Affecting Sleep for Hospitalized Children and Their Families: A Focus Group Study Robyn Stremler, Sherri Adams, Karen Dryden-Palmer

Correspondence to: Robyn Stremler E-mail: [email protected] Robyn Stremler Associate Professor Lawrence S. Bloomberg Faculty of Nursing University of Toronto Room 288, 155 College Street Toronto, Ontario, Canada M5T 1P8 Adjunct Scientist The Hospital for Sick Children Toronto, Canada Sherri Adams Nurse Practitioner Paediatric Medicine Complex Care Program The Hospital for Sick Children Toronto, Canada Karen Dryden-Palmer Clinical Nurse Specialist Bereavement Coordinator, Critical Care The Hospital for Sick Children Toronto, Canada

Abstract: Light, noise, and interruptions from hospital staff lead to frequent awakenings and detrimental changes to sleep quantity and quality for children who are hospitalized and their parents who stay with them overnight. An understanding of nurses’ views on how care affects sleep for the hospitalized child and parent is crucial to the development of strategies to decrease sleep disturbance in hospital. The purpose of this descriptive qualitative study was to gain an understanding of nurses’ views on their role in and influence on sleep for families; perceived barriers and facilitators of patient and parent sleep at night; strategies nurses use to preserve sleep; the distribution, between parent and nurse, of care for the child at night; views of the parent as a recipient of nursing care at night; and the nature of interactions between nurses and families at night. Thirty registered nurses from general pediatric and critical care units participated in one of four semi-structured focus groups. Four main influences on sleep were identified: child factors; environmental factors; nurse–parent interaction factors; and nursing care factors. Some of these restricted nurses’ ability to optimize sleep, but many factors were amenable to intervention. Balancing strategies to preserve sleep with the provision of nursing assessment and intervention was challenging and complicated by the difficult nature of work outside of usual waking hours. Nurses highlighted the need for formal policy and mentoring related to provision of nursing care at night in pediatric settings. ß 2015 Wiley Periodicals, Inc. Keywords: sleep; pediatric nursing; parent; child; hospitalization; shift work; qualitative Research in Nursing & Health, 2015, 38, 311–322 Accepted 14 April 2015 DOI: 10.1002/nur.21664 Published online 13 May 2015 in Wiley Online Library (wileyonlinelibrary.com).

During hospitalization, sleep is altered at a time when the restorative benefits of sleep are needed most. Children who are hospitalized and their parents who stay overnight with them are attempting to sleep in a new environment primarily focused on patient care rather than sleep. This environment, which varies according to the acuity of the child’s condition, is characterized by high levels of light and noise and interruptions from hospital staff, leading to frequent awakenings and detrimental changes to sleep quantity and quality, for the hospitalized child (Al-Samsam & Cullen, 2005; Corser, 1996; Cureton-Lane & Fontaine, 1997; Linder & Christian, 2012; Meltzer, Davis, & Mindell, 2012; Stremler et al., 2009) and for the parent (Franck et al., 2014; S. Y. Lee, K. A. Lee, Rankin, Weiss, & Alkon,

2007; Meltzer et al., 2012; Stremler, Dhukai, Wong, & Parshuram, 2011; Stremler et al., 2014). Sleep of inadequate quantity and quality has significant negative effects on adults’ and children’s behavior, cognition, and emotional and physical health, including difficulties in modulating emotions, decreases in cognitive function, and difficulties with decision-making (Bonnet, 2005; Dinges et al., 1997; Harrison & Horne, 1999; Stepanski, 2002). For parents who are already challenged by their children’s health conditions, sleep is especially important for their ability to cope with the illness event, support their children and other family members, participate in decision-making, and maintain relationships. In spite of knowledge that hospitalization interferes with sleep for children and the parents who stay with them,  C

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and that such sleep restriction has negative health consequences, only two small feasibility studies of activity and relaxation interventions aimed at improving sleep for hospitalized children were found (Hinds et al., 2007; Papaconstantinou, Hodnett, & Stremler, 2014), and none were aimed at increasing sleep for parents who stay overnight with their children. An understanding of the individual, family, and health care system influences on sleep in hospital from informants with varied perspectives is needed to refine such interventions.

Evidence to Date on Sleep in Pediatric Acute Care In our prospective study of 69 children hospitalized on general pediatric and critical care units, using objective measures of sleep, children slept 3–5 hours per night less than recommended for their age, awoke 12–18 times per night, and were exposed to light and sound levels well beyond recommended levels (Stremler et al., 2009). The greatest reductions in sleep time were experienced in the critical care unit, and there were more minutes of excessive levels of light and sound on the general pediatric units. Both parents and children described noise, light, uncomfortable sleep surfaces, anxiety, and interruptions for assessment of the child as interfering with their sleep while in hospital (Stremler et al., 2009, 2011). This team also studied 118 parents of children in critical care units, again using objective measurement of sleep, and found that in over a quarter of nights, parents met criteria for acute sleep deprivation (Stremler et al., 2014). These parents described a struggle with deciding whether to stay overnight with their children or to leave to sleep at home or in another location. There was considerable variability in the amount of sleep that individual parents achieved on different nights, and sleep was fragmented, with a large portion of the night spent awake. In a third study, hospital administrators described practices and provisions related to sleep in pediatric hospitals in North America. The administrators described limits to parents’ ability to stay overnight with their child based on child or unit acuity, and many expected involvement of the parent in the child’s care at night if they did stay (Stremler, Wong, & Parshuram, 2008).

Role of Parents on Pediatric Units at Night Designations of the recipients of care and distribution of care between nurse and parent at night and influences on sleep also have not been explicitly explored. Family-centered care typically denotes health care for children that holds essential the involvement of the family. Parents may be conceived of as co-clients or recipients of care who need support in order to continue to be with their ill children (American Academy of Pediatrics [AAP], Committee on

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Hospital Care, Institute for Patient- and Family-Centered Care [IPFCC], 2012; Callery, 1997; Franck & Callery, 2004; Johnson, 2000). Whether parents are considered coclients or not, preservation of the parental role by encouraging their contributions to their children’s care may interfere with the parents’ sleep. The extent to which overnight care (e.g., feeding, hygiene needs) is clustered, expected, or negotiated with families is unknown (McCann, 2008), and the nature of personal interactions between nurses and families in hospital during the night has not been examined. Because decision-making capacity and the ability to monitor and modulate emotions are impaired at night and when sleep-deprived (Dinges et al., 1997; Harrison & Horne, 1998; Harrison & Horne, 1999), the likelihood of interpersonal conflict may be greater at night. Families and nurses may have divergent goals for care at night; families may value uninterrupted periods for sleep over consistent, regular timing of treatments or assessments (Moore & Kordick, 2006). Nurses may also perceive conflicting health care goals for the families with whom they work. No reports were found of nurses’ views on how care at night might affect sleep for children who are hospitalized and their parents who stay with them overnight. Development of effective sleep-promoting interventions in pediatric hospitals requires an understanding of barriers and facilitators of sleep, particularly from nurses’ viewpoints, given their likely involvement in the delivery of such sleep-promoting interventions and their unique insight into possible system and environmental effects on delivery of care while promoting sleep for families in hospital. The purpose of the current study was to explore nurses’ perceptions of factors affecting sleep for the hospitalized child and parents including: nurses’ role in and influence on sleep for families; barriers and facilitators of patient and parent sleep at night; strategies used to preserve sleep; the distribution, between parent and nurse, of care for the child at night; the parent as a recipient of nursing care at night; and the nature of interactions between nurses and families at night.

Methods Design An exploratory, cross-sectional study design utilizing indepth, semi-structured focus groups and qualitative description was used (Sandelowski, 2000). Focus groups were used to obtain qualitative data about the experiences and opinions of nurses on factors affecting sleep for families with a hospitalized child. Discussing the area of interest in a permissive and nonthreatening environment allowed the group to interact, share multiple perspectives, and stimulate critical analysis of the topic at hand, providing insight and rich data that do not usually surface with other data collection techniques (Krueger & Casey, 2000; Morgan, 1997).

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Sample A purposive sampling strategy was used to recruit eligible staff nurses from a tertiary–quaternary pediatric academic health sciences center. Posters were placed on the units to advertise the study, the study was discussed at staff meetings, and group emails were sent to nurses explaining the study. Both the critical care and the general pediatric unit were selected for recruitment to provide a sample of nurses familiar with working with families of children with varying acuity of acute illness or trauma, exacerbations of chronic illnesses, and surgery. The critical care unit had 21 beds and provided care for children (birth to 18 years) with complex pathophysiology such as congenital diaphragmatic hernia, bone marrow and multi-organ transplantation, infectious diseases, traumatic injuries, and extracorporeal support technologies. The general pediatric units had 53 beds, divided into four units on one floor, providing care to children from birth to age 18, including those with common pediatric conditions (e.g., asthma, bronchiolitis, pneumonia, sickle cell disease, urinary tract infections), as well as those with complex multisystem conditions (e.g., children with genetic, developmental, and neurological conditions), and children undergoing investigations to establish diagnosis. Nursing staff were all registered nurses; no nursing assistants were employed. One hundred fifty-five nurses were employed in the critical care unit, while 180 nurses were employed on the general pediatric units; nurses did not rotate across units. Eligible participants had been registered nurses for at least 6 months and worked at least .5 full-time equivalent that included regular night shifts. Nurses set their own schedules on both units, such that full-time nurses completed 20 12-hour shifts in a 6-week period. At least half of shifts are required to be daytime shifts, and up to half can be night shifts, with an expectation of at least 7 night shifts of 20 shifts required for fulltime employees.

Characteristics of Participants The sample consisted of 30 female registered nurses working on either the general pediatric (n ¼ 11) or pediatric critical care unit (n ¼ 19; see Table 1). All participants were permanent staff members and did not rotate between units. Their years of nursing experience ranged from 6 months to 32 years (median 4.5 years), and most participants held a baccalaureate degree (n ¼ 20, 67%). Given that the nurses worked 3–10 night shifts per month (median 7), they were able to provide their views on sleep for families in hospital at night.

Data Collection Approval was obtained from the hospital research ethics board. Written informed consent was obtained from all

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Table 1. Characteristics of Registered Nurses in Focus Groups (n ¼ 30)

Age (years) Years of total nursing experience Years of pediatric nursing experience Typical number of night shifts per month

Type of unit General pediatrics Critical care Education achieved Diploma Undergraduate degree Graduate degree Participant is a parent? Yes No Missing

Median

Range

28.0 4.5 4.0 7.0

23–53 0.5–32 0.5–30 3–10

n

(%)

11 19

36.7 63.3

4 20 6

13.3 66.7 20.0

5 24 1

16.7 80.0 3.3

participants. Participants were informed that the researchers would take every precaution to maintain confidentiality of data, but were reminded that because participants in focus groups would provide data in the presence of others, confidentiality could not be guaranteed. All participants were asked to refrain from discussing the focus groups with those not in attendance. Four focus groups, two with critical care staff and two with general pediatric unit staff, each lasting 1 hour, were conducted. The groups consisted of staff from the same unit as it was felt that their shared experience would best facilitate building upon and being stimulated by each other’s thoughts and ideas. Two groups were held over the lunch hour, and two were held just before start of a night shift, in order to improve accessibility. All sessions were held in hospital conference rooms away from the activity of the patient care rooms and were held over a 4-day period. Upon arrival, participants were assigned a study identification number and filled in a brief demographic questionnaire. Participants received refreshments and $50 in recognition of their time. The focus groups were guided by a master’s-prepared moderator experienced in conducting qualitative focus groups with health care professionals. Two of the three investigators attended each session. One investigator took notes at all sessions, and the other recorded nonverbal communication. A semi-structured, open-ended interview guide (Table 2) was used. The interview guide was developed based on the existing literature related to children’s and parents’ sleep in hospital and the clinical and research experiences of the investigators. The guide also was shared with several nurses from units not directly involved in the study to ensure the questions were clear and relevant to provision of nursing care at night. For example,

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Table 2. Semi-Structured Focus Group Interview Guide We are trying to get a sense of your experiences in providing care to children and families in hospital during the night shift. Nurses are the health care professionals who spend the most time and provide the most care to children and families during the night and yet no one has ever asked nurses to describe what it is like caring for children and families at night, how they think it influences sleep for children and families, and their ideas about what is challenging and helpful with respect to children’s and families’ sleep at night. We are interested in your unique experiences and hope that we will have an open discussion of your ideas. We will ask you a number of different questions to get discussion going. Questions 1. Can you describe how children and families sleep at night in hospital? 2. What affects the quantity and quality of sleep for children and families in hospital? 3. Can you tell me about a situation that promoted or hindered sleep at night for a child or family? 4. In your role as a nurse, how do you affect sleep for children and families at night?

5. What things affect the influence you have on children’s and families’ sleep in hospital at night?

6. What strategies do you use or what advice do you give to children and families about sleep at night? 7. What are your expectations of the parent’s role in the care of his or her child in hospital at night? 8. Describe your interactions with parents and children at night. 9. Is there anything else related to sleep in hospital that you would like to discuss?

Probes More or less than usual, distribution across day vs. night, quality. Provision of care by nurse or parent, environment, resources/provisions for sleep, illness process, constraints on delivery of care, acuity of child.

How do you view sleep for children and families as part of your role? Why are you concerned or not about sleep? How do you promote or hinder sleep? How do you structure your delivery of care at night? How is this different than in the day? Are there things you wish you could do but can’t? What control do you have over how medical orders are carried out? Tell me about the availability of places to sleep, linen/personal care supplies. Does the acuity of child or the unit environment make a difference? How do you structure care at night? What recommendations do you give re: where to sleep? What care do you provide and what care does the parent provide? How does this change based on the child? Based on your workload? How are your interactions different at night compared to the day? Can you give some examples of collaboration, examples of conflict?

participants were asked to describe situations in which sleep for a child or parent was facilitated or compromised at night. Participants were not given a definition of sleep, nor were they directed to consider sleep of certain length or depth when providing comments to the group. Facilitators established focus group ground rules, including confidentiality and considerate interactions, reassuring participants that consensus was not the goal, encouraging participation of all members, and recording of nonverbal interactions (Krueger & Casey, 2000). None of the participants reported directly to any of the investigators, so the investigators’ presence at the focus groups was not expected to impede honesty of response. At the end of the focus group, a brief summary was presented to the group to verify what had been heard. Redundancy of responses was noted across the groups.

Data Analysis Analysis began after all groups were completed. Group sessions were audiotaped, transcribed verbatim, and deidentified. Qualitative analysis of the responses was conducted using content analysis, consistent with qualitative description, to comprehensively describe and summarize phenomena in everyday terms (Sandelowski, 2000).

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Analysis was facilitated by qualitative data analysis software (N-Vivo 8, Burlington, MA). Transcripts were independently coded by one of the co-investigators and a research assistant with experience in qualitative data analysis. Reliability was further ensured by third-party review. The research team read and re-read all responses to become immersed in and familiar with the data and to provide multiple perspectives on the data (Berg, 1995). Notes were made to organize initial thoughts and understandings of nurses’ experiences and also to identify personal assumptions to better maintain neutrality and limit use of preconceived categories. Initial codes were created using direct quotes or standard terms to provide a description of the phenomenon highlighted by the participants’ responses. These codes were generated inductively, based on key issues, concepts and recurrent ideas revealed from the data, with notations made regarding the frequency, extensiveness, emotion, and specificity of responses (Sandelowski, 2000). Using an iterative process, the researchers met to review and consolidate codes where repetition and overlap existed and developed consensus where differing codes were used and as new insights to the data developed (Miles & Huberman, 1994). The raw data were revisited throughout the analysis process so that the original context and meaning of the interviews was not lost. After completion of coding, the

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codes were organized into broader subthemes and themes to give an over-arching description and coherence to the data. Finally, another reviewer evaluated the results to ensure that the selected quotes accurately captured the meaning in the data. Descriptive statistics were used to characterize the sample.

Results Nurses identified four major types of influence on sleep for hospitalized children and their parents: (a) child factors; (b) environmental factors; (c) nurse–parent interaction factors; and (d) nursing care factors. Within these, recommendations for future practice and policy also emerged from the participants’ comments (see Table 3). There were no notable differences between the types and frequency of codes generated from participants from general pediatric versus critical care units. Sample quotes are reported with the participant’s study number in brackets; numbers beginning with 1 are general pediatric nurse responses and those beginning with 2 are critical care nurse responses.

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Acuity level. Worsening condition of the child and the need for frequent assessment and intervention was viewed as getting in the way of sleep, while conversely, improvements in the child’s status were seen as beneficial to the child and parent achieving sleep. Cognitive level. Adolescent and school-age hospitalized children were perceived as better able than younger children to achieve sleep and return to sleep once woken given their greater understanding of the need for hospitalization, assessments at night, and separation from the comforts of home. Sleep for infants, toddlers, and preschool-age children was viewed as more prone to disruption due to less comprehension of their situation, along with greater fear of health care professionals, and the possibility of painful procedures. However, participants also suggested that nurses could take on more care of infants and toddlers at night (e.g., diaper changes, nighttime feedings) to give parents more opportunity to sleep. Previous or expected experience in hospital. Participants also expressed that if children had previous experience in hospital, or were admitted for a planned respite or procedure, this was less likely to interrupt sleep for parents and children because they knew what to expect of sleep in hospital and could make plans for their stay.

Child Factors Nurses described the acuity of the child’s illness and care needs, the child’s developmental stage, and previous or expected experience in hospital as affecting sleep for the family.

Environmental Factors Several aspects of the hospital environment were viewed as detrimental to sleep for families. These included

Table 3. Influences on Sleep and Nurses’ Recommendations to Improve Sleep Influence 1. Child factors

2. Environmental factors

Subcategory Acuity level Cognitive level Previous or expected experience in hospital Noise level

4. Nursing care factors

No recommendations given; these factors are nonmodifiable.

Decrease use and volume of call bells, paging, equipment alarms.

Plan care to anticipate and reduce noise. Increase use of lights on dimmers, flashlights, soft lighting from equipment to decrease use of overhead lighting. Continuous and formal efforts to make staff aware of their contribution to noise and light levels. Interruptions Cluster assessments and interventions to minimize interruptions. Parents’ sleep space Provide enough sleep spaces for all parents who wish to stay overnight. Level of trust No related recommendations given. Communication Communicate with parents re: child’s status and care plan. Expectations of the parents’ No related recommendations given. role Negotiation of child’s care Discuss distribution of child’s care between parent and nurse at beginning of shift. Prioritizing sleep for the Convey to the family the value of sleep to child and parent health. child and parent Nighttime monitoring Use clinical judgment to determine frequency of nighttime monitoring. Delivery of care Advocate for, and plan, timing of assessments and interventions to preserve sleep. Mentor new nurses in strategies to preserve sleep. Develop evidence-based guidelines around provision of nursing care at night related to preserving sleep for the child and parent. Light exposure

3. Nurse–parent interaction factors

Recommendations

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excessive noise and light, interruptions from staff, parents and other visitors, and lack of space and provisions for sleep. Participants described their use of strategies to reduce light and noise and had many recommendations for improvements to the physical environment. Noise level. Noise from equipment (e.g., IV pumps, overhead paging systems), proximity to public areas where noise levels were higher (e.g., nursing station, high traffic corridors, public washrooms), and sound from other patients or visitors was noted to prevent children and families from achieving adequate sleep. Participants described their use of strategies to reduce noise, including anticipating or responding quickly to beeping of infusion pumps, moving carefully through rooms, and with equipment. They had many recommendations for changes to the physical environment (e.g., quieter call bell/pager system, more control over monitor alarms and volume) that could reduce noise. The participants also noted that hospital staff contributed to noise at night which increased sleep disruption for families: We’ve all been in the middle of a night shift and we’re laughing at the desk and realize the kid over here is asleep. So we’ve all done that too, where you’ve had to be quiet, or ask someone to keep it down. We’re kind of mixed up too, right, this is our daytime because we’re here in the middle of the night. (2-09)

Light exposure. Participants described tension between having adequate lighting for assessment and minimizing disruption to the family: Sometimes we really try to avoid that light coming into the room, and we’re doing it at a cost to how well we can see and how well we assess the kid. For me, I just did it yesterday, I said “yes, we have the lights off now, but if need be, I’m going to turn on the light, and I might need to do it every hour.” And I just set up rules, not rules, but just adjusting to how I might do things. I carry around a flashlight with me, but there’s only so much you can do with that, and just to facilitate sleep we sometimes are blind in there. And I’ve gotten very good at looking at things without any light. Even if it’s pitch black, you can see things. Or trying different things with your IV monitor. (1-04) Participants outlined the ways they reduced patients’ exposure to light at night (e.g., use of flashlights, avoidance of overhead lighting) and suggested changes to the

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equipment used and available in the hospital (e.g., lights with dimmers) that could decrease light exposure. Nurses called for more continuous efforts and formal programs to make staff aware of their contribution to excess noise and light in the environment. Interruptions. Participants recognized that interruptions for care by hospital staff were a significant source of disruption to sleep for the child and family. Parents or other family members and visitors sometimes were viewed as wanting to engage with the child at the expense of the child’s sleep time: And then when they’re awake (the parents), or visitors come, they want to come in and see the child and wake up the child, they want to talk to the child. In the morning they’ll come in and start talking to the child, meanwhile we’ve been working with an agitated child. . . You just get them comfortable sleeping, maybe with a little bit of sedation or whatever, and then their sleep gets broken more often [laughs]. (2-02)

Parents’ sleep space. Nurses’ views varied on the relative benefits of the sleep locations available to families. On the general wards, one twin-sized cot was typically available in the patient’s room, but usually no sleep surface was available for parents in the critical care unit. Other possible sleep spaces included a few designated parent rooms in the hospital (assigned based on a number of factors, such as distance of the family from their home, acuity of the child, need for breastfeeding, etc.), waiting room couches, space at an off-site Ronald McDonald house, a local hotel, or home. Some nurses were certain that sleep in a location designed for sleep was more restorative, leading to more refreshed parents who could better cope with their children’s illnesses. In contrast, other participants recognized that if a child was not doing well, a parent might choose to sacrifice sleep to stay nearby, or that sleep at home might not be restful due to worry about the child or care demands for other children at home. All nurses agreed that sleeping on waiting room couches, chairs at the bedside, or cars in the hospital parking lot was not ideal. Many viewed the lack of availability of spaces in which to sleep, and few provisions (e.g., pillows, blankets) given to facilitate sleep, as hindering sleep for parents: So sometimes you find two parents squished together on the cot, or one parent sleeps on the floor, or one parent sleeps on two chairs. . . . But parents want to be there for their kids, and both parents want to be there, and they support each other and that’s important. . .I see parents sleeping in cars, in

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the cars in the parking lot at night. So space is a major limitation. (1-09)

4:00 in the morning [laughs]. Parents are all upset. (1-02)

Several nurses noted that parents attempted to normalize the physical environment by incorporating comfort items from home and approximating the family’s usual bedtime routine as much as possible.

In contrast, nighttime interactions with families were also described as happening more readily, given less activity and fewer staff on the units, and had greater openness and depth:

Nurse–Parent Interaction Factors Aspects of interactions between parents and the child’s nurse including trust, communication, role expectations, and negotiation of care were viewed as having an influence on families’ sleep during a child’s hospitalization. Level of trust. Parents’ comfort in surrendering to sleep was viewed as related to their level of confidence in a particular nurse’s care, as shaped by past interactions. As one nurse related: Definitely if there’s an instance where they don’t get along with a staff member, or have had a past bad experience with our staff members, they’ll definitely linger closer to the bed or not sleep at all during the night. Relationships affect it [sleep] as well. (2-08)

Communication. Many nurses spoke of the importance of communicating with the parents and child to facilitate care, and thus sleep, at night. Communication related to the child’s status and expected assessments and interventions was viewed as a way of promoting sleep, while missing out on this opportunity to connect with parents was thought to interfere with sleep: Everything seriously goes back to communication. If you meet with the parents, and tell them what you’re doing, and why you’re doing it, and why it’s important, and why it’s good for their kid, and why it’s good for everybody and that kind of stuff, then I find that it’s a lot more cooperative. (1-01) However, there also was recognition that communication at night was different than that during the day. Nurses noted that working the night shift disrupted their sleep-wake rhythms, as it did for the hospitalized child and parents, and yet nurses were expected to function as they did during the day shift. The challenge of working as a nurse outside of usual wake time was thought to affect interactions with parents: You have to remember, we’re also up all night. So we don’t get in the best conversations at 4:00 in the morning with parents. You’re not at your finest professionalism at

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Some of the most powerful therapeutic conversations I’ve ever had, I’ve had them on the night shift. . . It’s a quiet moment when you’re by the bedside, and the mom is there. . .and it turns to “do you think my baby’s going to die?” That’s a pretty powerful question for whatever time it is in the morning. Because that’s when your fears come up, and your vulnerabilities come up. And that is when your true bedside manner can come through. I just listened to this poor mom talk about her fears. And it was really powerful, and she turned to me and said “I feel like I can go to sleep now, I’m going to say a prayer for my baby.” And that was an amazing experience. So nights isn’t always a horrible thing, sometimes it does give us a window, because that mom may have been able to be a bit stronger for their child. (2-13)

Expectations of the parents’ role. Parents’ presence and expected role in their children’s care at night were viewed as both impeding and facilitating sleep for the family. One nurse related: When parents don’t stay, we have more time to focus on the child as opposed to answering questions that the parents have of what you’re doing. A lot of parents are anxious, and they ask questions; “why are you doing blood sugar, why are you doing blood pressure?” instead of doing your essential care. You’re calming their anxiety, but. . .I know that it’s good to have them involved in the care but it gives you more time to focus on the child. (1-11) Other nurses reported that parental presence in the hospital at night improved the nurse’s ability to promote sleep for the hospitalized child: I love when the parents are there, it’s so much more easier for me because I feel like they have the answers to a lot of questions that I would have to find out. I can just ask them, and they would know; when do they fall asleep, how do they like to sleep, what is

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their favourite toy to sleep with, things like that. (1-08)

one night, we need to encourage it throughout the entire ICU stay. (2-19)

Negotiation of child’s care. Negotiating the distribution of care between nurse and parent was viewed as essential to facilitating sleep for parents:

Nurses also described taking steps to encourage all family members to get as much sleep as they could, particularly so they would be able to face the challenges of the following day:

If the child is feeding every 3 to 4 hours, at the beginning of my shift I might negotiate with parents in terms of what feeds they’ll do, and what feeds I might do for them so that they can get a continuous few hours of sleep. (1-05) There was also recognition that workload at night could be unpredictable, and parents needed to be made aware that despite the nurse’s commitment to preserving sleep by providing as much care as possible, her workload might interfere: You can’t say “you just go to sleep and I'm going to do everything.” When you make a new rotation, I always say something like “look, there are times when I may not be here right when it (IV pump) beeps, or may not be able to come at the time when you want me to, but I’ll try my best to accommodate it. I have other patients and families to help out too.” (1-03)

Nursing Care Factors Much of the focus group discussion centered on issues related to nursing care that affected sleep in hospital at night. The degree to which sleep was prioritized in the nurse’s practice, the amount of monitoring of patients that occurred, and the way care was delivered were seen as crucial to the amount and quality of sleep attained by families.

Prioritizing sleep for the child and family. Prioritization of sleep manifested as valuing sleep for patients and encouraging the family to sleep. Nurses described a tension between care priorities and protecting sleep, and the need to make a concerted effort to place importance on sleep: I mean everyone has a different interpretation of the value of sleep, right? So a lot of people would say “well, you’re in an ICU, you’re this sick, I’m more concerned about saving your life than how much sleep you’re getting.” And in certain patients, maybe that is the case for that one night, but it can’t be something that we, just because it happened

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I always say that the child may be my patient but so are the parents as well. . . And I say my intention is to make sure this child gets some sleep, and I hope that they (the parents) will as well. . .Have them understand that tonight is going to be quiet hopefully, and tomorrow’s going to be a busy day so you need to get your sleep in order to be up and ready. . . for a busy day tomorrow. (2-05) Some participants suggested that it was useful if parents or other relatives could spell each other off on alternate nights to maximize the amount of sleep among family members. Nighttime monitoring. Monitoring of patients’ health status was believed to affect families’ sleep in several ways. Hospital equipment and nursing assessments were viewed as a source of anxiety and frequent awakenings for children and their parents, and some nurses described a comfort in using their own discretion regarding monitoring frequency, regardless of the medical orders written for that child. This comfort grew with the nurse’s experience, and was guided by the individual patient’s context: So you know that between 7:30 or 8:30 I have to get vitals done because that’s what you’re supposed to do every four hours. But then as you get more experienced, and more comfortable in your care and your judgment, then you start the negotiation period where okay, the next time the kid wakes up, I’ll do vitals. If it’s six hours from the last time, it’s fine. You just have a better assessment and better judgment on what the acuity is of a child and what they need during the night. Within what’s ordered, but with mild variations so that you do optimize their sleep in the nighttime, and you get the parents to feel more comfortable, stuff like that. But I know in the beginning I was like oh, I have to do my vital signs. And you didn’t even think about it, “oh why am I doing it every four hours if the kid’s going home tomorrow?” . . .As I’ve gotten more experienced, I’m much better at negotiating and optimizing care, and going to the doctor and saying . . . change it to every six or every eight. . .But

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when you’re new, you’re just like “I have to get my tasks done, I have to get through the night or the day shift,” you don’t think about the total care. (1-03) At odds with some nurses’ comfort in reducing monitoring to spare sleep were other nurses who expressed concerns for patient safety and liability if monitoring was reduced and described a culture of expectation of monitoring, or at least hourly observations. Delivery of care. Workload shaped nurses’ ability to deliver overnight care in a way that preserved sleep for the family. For example, numerous admissions could get in the way of organizing assessments and interventions in a way that maximized time between care episodes. There was much discussion among the nurses on timing of care or tests (e.g., bloodwork, x-rays) as convenient to staff needs or schedules without taking into account the family’s need for sleep. Family distress at procedures scheduled in the early morning hours was viewed as understandable. Nurses described considerable nursing work to plan the timing of medications, anticipate when machines might signal the end of infusions, and arrange the physical environment to preserve sleep for families. Modifying care to protect the family’s time for sleep at night was also viewed as within the nurse’s role: I think that we need to remember that we can advocate for our patients. Sometimes they’re [physicians] just not thinking about what they’re ordering, they just are thinking about what they want to come out of it. To say, “just a second, can we wait until morning?” If you’re ordering a chest x-ray in the middle of the night it’s likely for a reason, like de-compensation, or something is happening with your patient. Obviously that would take priority over sleep at that moment. But the things that can be put on a more routine schedule, we need to be able to recognize what’s appropriate to do so, and when you should ask to have that. (2-16) They called for mentoring of new nurses on strategies to preserve sleep for families. As one nurse noted: I think that there definitely can be some mentoring for new nurses. And I was certainly doubtful of this too, because [when you are newly graduated] you go into a room and you’re like “okay, I have 10 things to do.” You don’t have that fluidity or that routine that “okay, I'm going to seal the IV,” and you don't have the grace of the way you move around the room. And I was like that,

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haphazard, and I’d forget to turn the monitor off [laughs]. And I know often that’s one of the things I work with new staff on, is turning the monitor off, shutting the door, turning the lights off even because you’re so focused on those other things as a new nurse that it’s hard to consider the environment. (1-09) Finally, the importance of developing evidence-based guidelines on sleep in hospital was mentioned in one group: We have guidelines now for pain and sedation. We have all these little protocols, but just sitting here I’m beginning to realize we have no best practice guideline about sleep. . . To be honest, what is a good approach to get them to sleep? What kind of sleep hygiene do our patients need? Perhaps that’s where the inadequacy is coming through. (2-13)

Discussion Nurses described many factors that affected sleep for hospitalized children and their parents. Factors related to the child’s circumstances were largely portrayed as nonmodifiable. Some factors related to the hospital environment, relationship with parents, and nursing practice were amenable to intervention by nurses, but others restricted the nurses’ ability to optimize sleep. The nurses perceived that noise was a barrier to sleep for families and, in fact, the contribution of noise in pediatric acute care settings to patients’ sleep disruption, increased distress, and greater need for sedation has been documented repeatedly (Carno & Connolly, 2005; CuretonLane & Fontaine, 1997; Trapanotto et al., 2004). Nurses expressed frustration with their limited ability to decrease noise generated by monitors, overhead paging, and the built environment. While hospital administrators in pediatric settings could facilitate sleep by changing design elements, equipment and materials, participants also acknowledged the role of the nurse in creating noise at night. This finding is supported by a study in a PICU setting in which health care professionals were the largest contributor of noise in the environment (Milette & Carnevale, 2003). Nurses’ contributions to noise were viewed as related to lack of awareness of noise levels and the need for socialization and interactions related to performance of work duties. Nurses recommended space and opportunity for nurses to communicate quietly for work and social engagement away from the bedside, acknowledging the importance of interaction with

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co-workers to staying alert on night shift, and sustaining change over time with intervention champions. Nurses acknowledged that light in the hospital environment was interfering with sleep at night but described a tension between ensuring adequate lighting for safe assessment of patients and striving to limit light to preserve sleep. Similar conflict between provision of care and preservation of sleep was reported related to monitoring of patient status. Families focused on achieving sleep, hospital administrators focused on patient safety, and physicians focused on orders for monitoring may not appreciate the degree of nurses’ awareness of and distress at these competing demands or their impact on nurses’ practice decisions at night. Increased attention to these issues is evidenced by the Choosing Wisely campaign of the American Academy of Nursing, which includes waking patients for routine care as one of ten “Things Providers and Patients Should Question” (American Academy of Nursing, 2015). The Choosing Wisely campaign aims to promote conversation between nurses and patients to help make decisions about the most appropriate care based on evidence and a patient’s individual condition or care requirements. These efforts should be built upon through open dialog among health care providers, administrators, children and their families, to develop formal policies to guide safe and effective practice during night shifts while taking patient acuity into account. Issues raised by the nurses highlight significant differences between nurses’ and families’ experiences in the hospital environment and bring into question whose needs define the nature of the setting. Ethnographers have revealed the tension between pediatric hospital spaces as a site for delivery of professional medical care and as a bedroom for the child (Macdonald, Liben, Carnevale, & Cohen, 2012), and our findings support this disconnection. Nurses described the hospital space as belonging to nurses, as reflected in their reluctance for parents and family members to interact with the child and nurse at night and their suggestions that parents leave the hospital at night, either due to lack of sleep space or based on the presumption that parents will sleep better elsewhere. Furthermore, as in our previous survey of pediatric hospital administrators (Stremler et al., 2008), nurses revealed that families often are separated at night, particularly in higheracuity settings, calling into question whether family-centered care can truly exist in such a context. We found previously that parents were significantly sleep-deprived and faced multiple, often competing, demands that affected their ability to achieve sleep, whether they slept near their children or not (Stremler et al., 2011, 2014). Parents struggled to decide whether to stay at the bedside and had difficult thoughts and feelings such as anxiety and worry that affected their sleep. Informing nurses of parents’ mixed experiences of sleep in the hospital is an important adjunct to other strategies identified by nurses as helpful to family sleep, such as building trust,

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communicating a plan of care for the night, and partnering with parents in care of their children. Clustering assessments and interventions to maximize sleep is clearly within nurses’ scope of practice but also is limited by conditions beyond the nurse’s control, such as patient acuity, orders from other team members, and the available physical environment. Care planning to preserve sleep and communicating with families about care at night were seen by nurses as time- and energyintensive but are essential to family-centered care, exemplifiying the invisible work of nursing. The nurses recommended mentoring of new graduates to formalize and increase use of such interventions. While nurses discussed significant nursing work related to planning care to preserve sleep, there was no mention of routine assessment of sleep. Although they were not asked specifically about the assessment of sleep, nurses did not volunteer the topic. When health care professionals in an adult acute care setting were asked specifically about efforts to assess sleep, they described them as minimal (Ye, Keane, Hutton Johnson, & Dykes, 2013). Given the dearth of evidence for interventions that effectively promote sleep in the hospital setting, the lack of systematic assessment of sleep in hospital is not surprising. When strategies to improve sleep in hospital are developed and shown to be effective, assessment of their effects on sleep are more likely to occur. Nurses acknowledged that their work on the night shift occurred at a time when their ability to respond to families’ needs was suboptimal. It is essential to recognize that nurses are being asked to perform psychologically and physically challenging work at a time in their circadian rhythm when they should be asleep. Interventions aimed at improving patient and family sleep would likely gain buy-in from nurses if the interventions also addressed the challenges of performing the highly skilled work of nursing at night and included strategies for nurses to feel alert and effective at work at night and to sleep well during the day. Although later bedtimes and earlier rise times have been documented in the literature as restricting the amount of sleep children achieve in hospital (Linder & Christian, 2012; Meltzer et al., 2012; Stremler et al., 2009), the nurses in the focus groups viewed sleep disturbance as resulting primarily from frequent awakenings rather than shortened opportunity to sleep. These views may explain the participants’ focus on strategies to reduce nighttime interruptions due to noise, light and care activities. No mention was made of pain relief, comfort, or relaxation strategies for parents or children that might aid in initiation or maintenance of sleep, such as music, massage, or pain medication. This finding is in contrast to two studies of health care professionals’ practices around sleep in adult acute care settings, in which pharmacological and nonpharmacological comfort strategies were used for sleep promotion (Eliassen & Hopstock, 2011; Ye et al., 2013). Some interventions to promote sleep may be limited by the

NURSES’ VIEWS OF FACTORS AFFECTING SLEEP IN HOSPITAL/ STREMLER ET AL.

acuity of the child’s condition or hospital unit, given that as acuity increases, so does the need for interventions and the frequency of assessments. Given that many of our participants worked in a critical care environment, this also may explain their focus on sleep disturbance due to more wake time at night.

Limitations In all focus groups, there is a risk that participants’ responses might be inhibited by the focus group setting or other participants (Krueger & Casey, 2000). These issues were addressed by holding multiple focus group interviews and engaging a facilitator with extensive experience who maximized participants’ comfort and openness in expression. We did not conduct analysis before completing all focus groups, which may have better allowed us to build on each group’s key messages as we moved to the next session. Findings reflect the experiences of a limited number of nurses from one pediatric hospital and may not be transferable to other pediatric settings that might have different practices, systems, and policies related to sleep in hospital. However, common themes were found across focus groups and between nurses working in general pediatric units and critical care units, which increases the likelihood that the results are relevant to pediatric nurses with varying years of experience and practice specialties (Mays & Pope, 2000).

Research Recommendations Future researchers should leverage what we have learned from previous studies in children and their parents in hospital (Stremler et al., 2009, 2011, 2014), and in hospital administrators (Stremler et al., 2008) and nurses to develop interventions. While it may be simpler to test single approaches to improving sleep, such as noise reduction strategies, they have limited power to effect change, given the multiple and conflicting influences on sleep in hospital. We suggest an integrated, multi-pronged knowledge translation intervention wherein all stakeholders are involved in the development, implementation, and evaluation. Key strategies are education for all stakeholders regarding other groups’ views on challenges to sleep in hospital; environmental, staffing, and policy changes to decrease light and noise for families while ensuring safe practice conditions for nurses; systematic assessment of sleep for children and their parents; sleep-promoting interventions that have shown promise in adults and children in hospital (e.g., eye masks, ear plugs, music, relaxation techniques); education for nurses regarding challenges of sleep and shift work and its intersection with provision of care; and improvements in space for families to be together at night in hospital. All these strategies need to be balanced with safe practice and family-centered care principles. Evaluation should include sleep quantity and quality for children

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and parents, nurses’ alertness on night shift and ability to sleep on days off, family satisfaction with care, noise, and light levels, staff awareness of sleep assessment and intervention strategies, and nurses’ perceived ability to influence sleep for patients.

Conclusion This study was the first to explore nurses’ views on factors affecting sleep for the hospitalized child and parent and the provision of nursing care at night. Balancing strategies to preserve sleep with the provision of nursing assessment and intervention was challenging and complicated by the difficult nature of work outside of usual waking hours. The struggle between provision of care and promotion of sleep was also seen in conflicting views between family and nurses related to prioritization of sleep and the physical space for care. Nurses highlighted the need for policy change and mentoring related to provision of nursing care at night in pediatric settings.

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Acknowledgments Dr. Stremler received funding for this project through the Rosenstadt Health Research Fund, Lawrence S. Bloomberg Faculty of Nursing, University of Toronto. Dr. Stremler is a recipient of a Canadian Institutes of Health Research New Investigator Award and an Early Researcher Award from the Ontario Ministry of Research and Innovation. Study sponsors had no involvement in any aspects of study design, data collection, analysis or interpretation of data, writing or submission of the paper. We wish to thank Radha McCulloch for guiding the focus groups, Stanley Ing for assisting with data analysis, Julie Weston for study coordination, and the participating nurses for sharing their time and experiences.

Research in Nursing & Health

Nurses' views of factors affecting sleep for hospitalized children and their families: A focus group study.

Light, noise, and interruptions from hospital staff lead to frequent awakenings and detrimental changes to sleep quantity and quality for children who...
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