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Parents’ Experiences and Perspectives of Their Child’s Sleep Quality During Hospitalization

Parents’ Experiences and Perspectives of Their Child’s Sleep Quality During Hospitalization Sleep is essential for maintenance and restoration of health, yet studies exploring this in hospitalized children are scarce. In a qualitative study, we assessed the perceived quality of sleep, factors affecting sleep, and the role of health care professionals in the sleep environment for hospitalized children aged 1 to 12 years. Data were obtained from 11 semi-structured, audio-recorded, and verbatim-transcribed interviews with parents, and analyzed using a systematic thematic analysis. The interviews were coded based on iterative assessment of transcripts. Subsequently, categories and interpretative main themes were identified. Four themes emerged: (1) being informed, keeping informed; (2) coordination of care; (3) parents as main advocates for their child’s sleep; and (4) environmental disturbers. Parents reported differences in their child’s sleep quality during hospital compared with home. Sleep is substantially affected during hospitalization, prompting the need for interventions to improve the quality of sleep of children. Parents provided valuable suggestions for improvements. Keywords sleep quality, child, parents, hospital, disrupters Particularly during hospitalization, the quality of Introduction sleep is important because sleep deprivation may con- Sleep is an essential daily requirement for the development tribute to impaired recovery, prolonged length of stay, and maintenance of physical and psychological health such reduced subjective well-being, and poor patient percep- as memory processing and consolidation, cellular repair, 12-14 tion of hospitalized care. Nevertheless, research 1-5 brain development, and hormonal regulation. Good sleep showed that sleep quality in hospitalized children is quality is characterized by adequate sleep duration, ade- 15-18 reduced compared with home. quate sleep quality (comprising sleep satisfaction, uninter- Studies exploring the experiences regarding chil- rupted sleep, and being fit upon awakening), and adequate dren’s sleep quality during hospitalization are scarce. A timing (a sleep schedule that fits with the natural biological qualitative study with hospitalized adolescents (13-17 6,7 rhythm, in the absence of sleep disorders). years) revealed that a lack of self-control, disease- Reduced sleep quality is associated with unfavorable related factors, and unfamiliar noises affected sleep. consequences on health and daily life. Short-term conse- One study reported on the views of parents about the quences of interrupted sleep are, for example, increased stress, emotional distress and mood disorders, and Emma Children’s Hospital, Amsterdam UMC, University of 8,9 decreased cognition and memory. Adolescents show Amsterdam, Amsterdam, The Netherlands problems with school performance and have increased Department of Internal Medicine, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands risk-taking behaviors. In addition, children are at risk of daytime sleepiness, reduced alertness, hyperactivity and *Both authors equally contributed to this work. 10,11 decreased attention, and poor emotion regulation. Corresponding Author: Long-term health consequences of interrupted sleep in Cor-Jan van der Perk, Emma Children’s Hospital, Amsterdam UMC, adults include anxiety, depression, hypertension, cardio- University of Amsterdam, Meibergdreef 9, 1105 AZ Amsterdam, vascular disease, weight-related issues, and type 2 diabetes The Netherlands. 8-10 Email: [email protected] mellitus. 2 Clinical Pediatrics 00(0) sleep quality of their child (3-12 years) during hospital- for children younger than 1 year old and therefore did ization but did not include surgical patients. Results not participate. The following inclusion criteria were showed that noise, light, and daily schedules affected used: parents of children aged 1 to 12 years rooming-in sleep. Another study focused on pediatric nurses’ for at least one night, children staying at the ward for at views on factors affecting children’s sleep during hospi- least 24 hours, and parents’ proficiency in Dutch. For talization and their most important finding was that most more unequivocal results, infants have been omitted due influencing factors were related to nursing practice and to unstable circadian rhythms. Children with known could be resolved through changed policies and mentor- sleep disorders were excluded from the study. The par- ship aimed at improving sleep for pediatric patients. ticipants were selected purposively. To reach maximum To the best of our knowledge, no study on this subject heterogeneity, we selected children with various disor- has been executed among a general pediatric hospital ders, ages, and length of stay. In addition, diversity in population. Therefore, the objective of this study was to age and sex of parents were considered. gain information on (1) the perceived quality of sleep, (2) disrupters and promoters of sleep, and (3) the role of Data Collection health care professionals in creating a healthy sleep environment for children aged 1 to 12 years during hos- Eligibility for participation was assessed by C.J.v.d.P. in pitalization, as reported by parents. collaboration with the pediatric nurses. If parents were willing to participate, the interview was scheduled to take place during admission. Methods The interviews were conducted by C.J.v.d.P., who Study Design was not involved in the care for the patients. Characteristics of children and parents (eg, sex parent/ A deductive explorative qualitative study design with patient, age, marital status, length of hospital stay, num- semi-structured interviews was used. We considered a ber of previous hospitalizations, reason for admission) phenomenological approach, the appropriate method for were retrieved at the beginning of the interview. answering our research question, as it focuses on shared Interviews took place in a meeting room or patients’ experiences and meanings among the participants using room between October 2021 and March 2022, and lasted interviews about experiences and feelings. The between 45 and 60 minutes. The interviews were audio COnsolidated criteria for REporting Qualitative research recorded and field notes were written down immediately (COREQ) was used to ensure the accuracy of the design after each interview. and execution of the study. The structure of the interviews was guided by a topic list and a semi-structured interview guide, based on 2 Setting and Participants 19,25 studies. The guide was assembled in collaboration with the research team. After 2 interviews, the interview The study was executed at Emma Children’s Hospital, data were reviewed by C.J.v.d.P. and P.B. to determine Amsterdam University Medical Center, 1 of the 7 ter- whether adjustments in the interview guide were neces- tiary care hospitals for children in the Netherlands. In sary. After updating the guide, the following interviews this hospital, children from birth to 18 years old are were executed. treated on 3 general pediatric wards, namely, an acute Data saturation was determined in a research meeting admission ward, a pediatric intensive care unit, and a in which all members agreed that no additional informa- neonatal intensive care unit. Children stay in single or tion could be derived from the interviews. Table 1 dis- double patient rooms, accompanied by one of their par- plays the topic list; the complete interview guide is ents. All rooms have sleeping facilities (a couch that can shown in Supplemental Appendix A. be converted into a bed) for parents and are equipped with toilets and showers. Every room has blackout cur- tains and a tablet on which relaxing music or lullabies Data Analyses can be played. Pedagogical supportive care provides age-related materials and care (eg, relaxing exercises, Consistent with the phenomenological approach, a music mobiles) to help the children relax and potentially qualitative thematic analysis was performed following facilitate sleep. Children are also encouraged to bring 6 steps: (1) The audio recordings of all interviews their own items from home to support sleep. were transcribed verbatim by 2 research assistants and Parents of children admitted on 2 general pediatric 2 researchers (C.J.v.d.P. and P.B.). The transcriptions wards and the acute admission ward were invited to par- were read by the research team (C.J.v.d.P., P.B., and ticipate in the study. The fourth ward focuses on the care J.M.) several times for familiarization of data. (2) van der Perk et al 3 Table 1. Topic List. Topic Parents perceptions on Usual sleep at home Usual sleep of child at home (more/less) Usual sleep of parent(s) Sleep in hospital Sleep pattern child and parent(s) Sleep during day (more/less) Differences with sleep at home Daytime functioning child/ parent(s) Experiences with prior hospital admissions Sleep promotion Examples, ie, bedtime story-telling, reading, nightlamp, soft music Influence HCP Care-related routines/other Nurses doctors/other Sleep promotion/hindering by HCP (examples) Recommendations for HCP Other environmental disrupters Promoting/ disruptive factors other than by HCP. Light, noise, movement, Other patients/parents in room Abbreviation: HCP, health care professionals. During the first stage of data collection, 2 interviews during the data collection and analyses, moving care- were coded and analyzed by C.J.v.d.P. and P.B. inde- fully back and forth between the data and the various pendently to reach consensus about the final list of steps in the analysis. The analysis was discussed by the codes. After consensus was reached, the remaining authors until agreement was reached. interviews were performed by C.J.v.d.P. The coding of To increase study dependability, the coding that these remaining interviews was checked and comple- resulted from the transcripts and the subsequent themes mented by P.B. and J.M. (3) By comparing the gener- were checked and reconfirmed by 2 researchers that ated codes with each other and re-reading the associated were not involved in data collection (P.B. and J.M.). quotes, categories were formulated. (4) In several meet- To promote conformability and transferability of ings with the research group, the categories were criti- the findings, extensive descriptions of the selection, cally discussed and adapted, constantly returning to the data collection, and analysis processes have been codes and the transcripts, until (5) consensus was described, including context and characteristics of the reached on the final themes after which (6) the final participants. research report was written. The data analysis was facil- Last, all quotes have been translated by one researcher itated by MaxQDA-software. (P.B.) and validated by all the co-authors to ensure cor- rectness and to capture the tone/intonation of the parent(s). Occasional discrepancies were solved by con- Trustworthiness (Validation) sensus discussions. Several techniques were used to increase the trustwor- thiness of the findings. Trustworthiness was estab- Ethical Considerations lished in accordance with the standard criteria for qualitative research: credibility, dependability, con- All data were treated according to the European General formability, and transferability. To enhance credibil- Data Protection Regulation and were anonymized before ity, the interviews were conducted in a quiet private analyzing and reporting. All participating parents gave environment. Immediately following the interviews, informed consent and permission to make audio record- field notes were made describing the circumstances ings. All data were stored on a secured hospital server. and nonverbal communication. Conducting multiple interviews ensured a sufficient saturation of the care- Results givers’ views about the sleep of their child. The tran- scripts and preliminary analyses of the interviews were Thirteen parents were interviewed. The audio recording sent to the participating parents, to confirm that the failed for one interview, and therefore had to be interpretations accurately reflected their views and excluded. One of the interviews was conducted with a experiences (member check). Furthermore, various parent couple. The mean age of their children was 6.9 consensus meetings were held with the research group (range = 1-12) years, and 6 of them were girls. The 4 Clinical Pediatrics 00(0) Table 2. Demographics of Participants. their opinion, sleep duration, number of awakenings, the ease of falling asleep, and bedtime were affected by the Parents (N = 12) hospitalization: Gender parent Female, n (%) 6 (50.0) If I compare it with home: when a child is ill, but without the need for hospitalization, it lays in bed in a quiet room Age mother, mean (SD) 39.0 (8.4) all day. But here [in hospital] it’s a jungle, it is chaotic here. Age father, mean (SD) 40.3 (6.8) The difference between home and hospital is very big. Marital status, n (%) (Interview 11) Married 10 (83.3) Divorced 2 (16.7) According to all parents, poor sleep quality is Patients (N = 11) explained mainly by the severity of the child’s illness. For example, awakenings were caused by pain, nausea, Gender child Female, n (%) 6 (54,5) or vomiting. Depending on the exact time of waking up Age child, mean (SD) 6.9 (4.1) during the night, children had difficulty falling back to Length of stay at interview, mean (SD) 4.3 (2.2) sleep again. Two parents indicated, however, that their No of admissions total, n (%) 5.6 (3.0) child was able to fall asleep quickly again after being No of admissions AUMC, n (%) 3.6 (2.0) disturbed. Furthermore, parents indicated that the num- Type for admission, n (%) ber of disturbances at night by health care professionals Unplanned 9 (81.8) was associated with the severity of illness: Planned 2 (18.2) And at home she also sleeps continuously through the Admission diagnosis night, whereas here I notice her sleep is disturbed more Airway infection easily. (Interview 5) Acute myeloid leukemia Surgery for appendicitis The impact on sleep during admission differed among Surgical straightening of foot (muscle the children. Some parents indicated that their child was disease) unable to sleep during the day, even when the child was Epstein-Barr/congenital bronchomalacia drowsy and tired. Others indicated that their child was Volvulus Baclofen pump placement/cerebral palsy exhausted by the poor night’s sleep causing him/her to Multi System Inflammatory Syndrome catch up sleep during daytime. As a result, the child’s fever/rash fatigue and sleepiness during the day were strongly Chronic abdominal pain influenced by the amount of sleep. In addition, daytime Noro virus—dehydration functioning seemed also impaired, where some children Respiratory syncytial virus infection had no energy to do something fun during the day due to Abbreviations: AUMC, Amsterdam University Medical Centre; n, poor nighttime sleep. Most parents did not think poor number. sleep had an impact on their child’s mood, even though they responded more emotionally due to their illness. length of hospital stay varied between 2 and 8 days. Parents said that both sleep quantity and sleep routines Nine admissions were unplanned. The admission diag- were very different in the hospital compared with home. nosis varied between the children. An overview of the In the hospital, the children usually went to sleep later. characteristics of the children and parents is presented in Some parents tried to adhere to bedtime routines from Table 2. home, but often failed due to the different circumstances during hospitalization. Parents who had been in hospital with their child Reduced Sleep Quality During Hospitalization more often, mentioned that children had to recover at The first aim of this study was to gain a better under- home from the lack of sleep in the hospital. Other par- standing of inpatient sleep before focusing on disrupters ents were confident that their children would return to and promotors of inpatient sleep and the role of health their normal sleep rhythm after discharge: care professionals (second and third aim of this study, respectively). I noticed when she [the child] comes home after discharge, she Nine parents indicated that their child’s sleep quality indeed sleeps much longer in the morning than she normally was reduced in the hospital compared with home. In does. So we always say: she needs to refuel. (Interview 2) van der Perk et al 5 Figure 1. Processing and aggregation of information. experienced that information provided about their Main Themes child’s sleeping habits were not transferred among Four main themes emerged from the interviews: (1) being health care professionals. As a result, health care profes- informed, keeping informed; (2) coordination of care can sionals did not always consider the agreements made make a difference; (3) parents as main advocate of their about the schedule and routines. Parents attributed this child’s sleep; and (4) environmental disturbers (see Figure 1). to a lack of information exchange between professionals The themes are separately described below. or to information missing in the electronic patient file. Parents suspected that important information was diffi- Being informed, keeping informed. Child’s sleep quality cult to obtain due to an overload of information. during both night and day appears to be highly depen- Parents believed that creating a plan for the upcom- dent on the communication and information exchange ing night together with nurses was beneficial for a good between parents and professionals. For example, parents night sleep. They appreciated upfront information about 6 Clinical Pediatrics 00(0) the timing of interventions during the night, such as in because you are here anyway. It is difficult to make clear appointments since you do not know how the day will turn medicine administration. In addition, they also men- out. (Interview 5) tioned that dividing care-related tasks and responsibili- ties among health care professionals and parents was Parents as main advocates for their child’s sleep. Parents valuable for better sleep quality, for example, the admin- took the role of guardians for their child’s sleep to ensure istering of medication: that the child would get as much sleep as possible. To ensure that their child feels as safe and comfortable as She [the nurse] said: “I’ll provide it [medication] to you now. If she wakes up, you can give it yourself and then we possible, they ensured that important personal items of don’t have to come in; you just let me know at what time their child (cuddly toy, pillow, sleeping bag) are taken you administered it.” . . . That makes it [moment of from home and tried to continue sleeping routines from disturbance] for her as short as possible. (Interview 9) home as much as possible in the hospital. Some parents actively discussed the organization of Parents experienced a lack of information about the care with the health care professionals in such a way that child’s program for that day, for example, diagnostic their child’s sleep would be supported. For example, testing, medicine administering. As a result, daytime some parents decided about the care they could provide naps could not be planned: themselves on times they considered best, for example, changing diapers. In this way, parents ensured that their Of course, . . . you don’t know the schedule. So, you don’t child was not unnecessarily disturbed. know exactly when things will happen. . . . Like, what time Parents mentioned being alert constantly to avoid food will arrive, what time breakfast, what time . . . That disturbances they felt were unnecessary. They some- gives peace. Having a certain routine also gives some times closed the curtains at the entrance to the patient peace. (Interview 4) room, or put up signs with the message that their child was sleeping. Unfortunately, this did not always give the In addition, health care professionals tend to walk in desired result: unannounced and at any time without taking the child’s sleeping rhythm into consideration. They came in during her sleep to bring food, and another For example, nutrition assistants were often not time the cleaner tried to enter although the curtains were aware of deviating dietary arrangements. As a result, closed. So at admission, we asked for a door sign. They children were disturbed in their sleep while they were gave us a sign that was so beautifully made that no one read not allowed to eat. it anymore, because it looked like it belonged to the interior. (Interview 1) Coordination of care can make a difference. Parents expe- rienced a lack of coordination of care, especially during Most parents were very understanding and believed the night. As a result, children were disturbed more often disturbances were necessary for their child’s care. than was necessary according to the parents. Some par- However, others were annoyed when their child was dis- ents said a good transfer from the evening shift to the turbed in their sleep but were afraid to speak up on night shift had a positive impact on the child’s sleep: behalf of their child. Parents appreciated it when nurses were advocating for their child’s rest, for example, by And then during the night, you saw right away when it was negotiating about scheduling medical examinations and well organized. For those moments we didn’t have to making sure other health care professionals did not enter remind anyone. In fact, the nurse came in and said: okay, the room during naptime. this is how it will happen tonight. Yes, that works very well! (Interview 1) Parents took great effort to ensure that the hospital room was low stimulus. For example, they tried to darken Parents indicated that they also experienced a lack of the room by putting a towel over the infusion pump and coordination between professionals of different disci- placing the monitor behind the bed curtains. Parents said plines. All professionals seemed to have their own that they sometimes stayed awake themselves to turn off schedule without consulting each other. Consequently, the alarms of the feeding or infusion pumps quickly, hop- different disciplines entered the patient room scattered ing the child would not get disturbed: throughout the day making it impossible for the child to have moment of rest: As a mother you are always very alert, because you don’t want your child to wake up unnecessarily. So, you press the Of course, the doctors only come in when they have time. alarm button quickly, and do not wait for a nurse to come in So, you cannot get that moment clear. And others . . . walk and turn off that beep. (Interview 2) van der Perk et al 7 Other parents accepted that their child woke up, the effect of a child’s physical condition on sleep qual- 18,25,28 because the alarms gave them a feeling of security that ity. Furthermore, physical discomfort could lead to their child was well looked after. passivity during the day, making it more difficult to fall asleep in the evening. Other consequences of impaired Environmental disturbers. All interviewed parents noticed sleep mentioned were inactivity, no energy to play, being that their children were exposed to many environmental drowsy, or taking more naps during the day. In contrast disturbers. Especially the sounds of monitors, infusion to previous research, parents mentioned that mood was pumps, or feeding pumps made their child wake up, but not affected by the lack of sleep. In our study, affected also lights (power outlets or nurses’ flashlights) were mood was attributed to the illness rather than the sleep disturbing. Some parents preferred the room tempera- quality. ture to be the same as the child was used to at home and Our results show the importance of getting and shar- mentioned that room temperature was sometimes ing information about the sleeping habits of the child adjusted by a nurse without consulting them. Some chil- among the health care professionals, and handing over dren were bothered by intravenous lines or monitor this information to next shifts. The child’s sleeping hab- cabling, making it difficult to fall asleep or to stay its were not often considered in the working routines. asleep. However, many children woke up briefly and fell 19,20,29 This theme was found in previous studies as well. back asleep quickly. For some children, going back to Hospitalized adolescents mentioned feeling uncomfort- sleep was dependent on the timing of the interruption. able due to the unpredictable activities by nurses at Contrary to these comments, 2 parents indicated that it night. The value of a commonly agreed schedule was was generally quiet and that the lights were dimmed on also highlighted in this study, as adolescents slept better the ward, outside the patient rooms. when they knew the schedule for the night upfront. Parents felt that many of these disrupters seemed In our study, parents indicated that a lack of coordina- unavoidable, but that they had an impact on sleep tion of care is contributing to poor sleep. This is a persis- quality: tent, yet potentially modifiable finding that is in line with a systematic review among adult patients describ- That thing [infusion pump] will sometimes beep for ing that the extensive network of nurses, doctors, and minutes. Yes, of course I sleep terribly because of that, and other health care professionals involved in the care, she [the child] was also bothered by it. . . . These things are influenced the sleep quality of patients. annoying, but because we are in hospital, it cannot be To our knowledge, this is the first study reporting on avoided, I think. (Interview 6) the importance of parents acting as guardians of their child’s sleep, for example, by reducing the number of Parents also suggested solutions to several disrup- interventions during the night, and by creating a low- tive noises. For example, a mother mentioned another stimulus environment. Another study reported that ado- hospital having the drip and feeding pumps outside the lescents found it reassuring that a parent stayed patient room. One father indicated that he did not under- overnight, but this was attributed to seeking an attach- stand that the alarms of the monitor could not be turned ment person. Parents’ role to advocate for their child’s off, as these alarms are sent to the nurse’s beeper system sleep was not found in previous research. Parents’ feel- anyway. ing they have to act as guardians on behalf of their chil- dren could be associated with the lack of information Discussion exchange between them and health care professionals. In this study, the perceived quality of sleep, disrupters Environmental factors were considered important and promoters of sleep, and the role of health care pro- disrupters of sleep. Parents mentioned intravenous lines fessionals in creating a healthy sleep environment for or monitor cables resulting in a limited range of motion hospitalized children were explored. The results from 12 and hampering sleep. In addition, major disrupters of interviews with parents show that children’s sleep qual- sleep were noise and light. These findings are in line 17,19,20,25,28,30-33 ity is impaired during hospitalization. Four themes with previous research. However, parents emerged from the interviews: (1) being informed, keep- indicated that health care professionals attempted to be ing informed; (2) coordination of care can make a differ- quiet and avoid light stimuli, but unfortunately, often ence; (3) parents as main advocates for their child’s with insufficient results. sleep; and (4) environmental disrupters. Parents made recommendations for improvement According to most parents, physical discomfort had a such as putting a sign on the door. Some parents recom- big influence on the inability to fall asleep or to stay mended bundling of care and providing a day schedule asleep during the night. Prior research also reported on on paper, so the child and parents would know what to 8 Clinical Pediatrics 00(0) expect. Previous studies also report on organizational duration of sleep. In addition, more information is and environmental improvements, such as coordinated required regarding the factors (environmental, disease- staff, daily schedules and the bundling of care, blackout related, care-related, patient-related) that affect inpatient 19,20,25 curtains, and better room temperatures. sleep. More knowledge is needed on the consequences of poor sleep quality, for example, on the recovery time of children after hospitalization. Strengths and Limitations A strength of this study is the heterogeneous sample of Acknowledgments participants of clinically admitted children with their We would like to thank Roos van der Laan and Denise parents. Child’s age varied and sex was equally distrib- Roffelsen for transcribing the recorded interviews. uted. In addition, an equal distribution in participation of fathers and mothers was achieved. Another strength of Author Contributions this study was the consideration of researcher bias, CJvdP: Conceptualization, methodology, formal analysis, inves- where we made sure the interviewer had no treatment tigation, writing - original draft, visualization, project adminis- relationship with the interviewed parents and their child. tration, validation. PB: Conceptualization, writing – original A limitation of this study is the use of proxy reports: draft, writing review/editing, methodology, formal analysis, vali- The parents were asked about the experiences and per- dation, visualization. JM: Conceptualization, methodology, vali- spectives of sleep of the admitted children instead of the dation, formal analysis, writing - review & editing, validation, supervision. RJBJG: Conceptualization, writing - review & edit- children themselves. It is possible that parents’ own ing, validation, recources, funding acquisition. sleep quality influenced the perspective on the sleep quality of the child. To reduce this risk, we explicatively Declaration of Conflicting Interests asked parents about their sleep quality besides their per- spectives of their child’s sleep. The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article. Conclusions Funding The sleep quality of children admitted in hospital is sub- stantially less than at home. This may be explained by The author(s) disclosed receipt of the following financial sup- port for the research, authorship, and/or publication of this the child’s physiological or mental state, care-related article: This study was partly financed by internal research activities, and environmental factors. Due to inadequate grant 8727, Amsterdam UMC, the Netherlands. communication and coordination of care, the quality of sleep of the children is regularly compromised. Parents Ethical Approval have an important role in facilitating their child’s sleep during admission. Approval for the study was obtained from the Institutional Review Board of the Academic Medical Center (W21_395 # 21.440). Recommendations ORCID iDs Children’s sleep in hospitals may be improved by facili- tating sleep and embedding sleep-awareness in daily Cor-Jan van der Perk https://orcid.org/0000-0003-3024-4068 care. The child’s sleep routines should be communi- Pia Burger https://orcid.org/0000-0001-7780-1437 cated clearly among all persons involved in the care and documented in the patients’ medical record. 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J Clin Nurs. qualitative study of sleep quality in children and their 2020;29(5-6):706-719. http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Clinical Pediatrics SAGE

Parents’ Experiences and Perspectives of Their Child’s Sleep Quality During Hospitalization

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SAGE
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© The Author(s) 2023
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0009-9228
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1938-2707
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10.1177/00099228231188223
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Abstract

Sleep is essential for maintenance and restoration of health, yet studies exploring this in hospitalized children are scarce. In a qualitative study, we assessed the perceived quality of sleep, factors affecting sleep, and the role of health care professionals in the sleep environment for hospitalized children aged 1 to 12 years. Data were obtained from 11 semi-structured, audio-recorded, and verbatim-transcribed interviews with parents, and analyzed using a systematic thematic analysis. The interviews were coded based on iterative assessment of transcripts. Subsequently, categories and interpretative main themes were identified. Four themes emerged: (1) being informed, keeping informed; (2) coordination of care; (3) parents as main advocates for their child’s sleep; and (4) environmental disturbers. Parents reported differences in their child’s sleep quality during hospital compared with home. Sleep is substantially affected during hospitalization, prompting the need for interventions to improve the quality of sleep of children. Parents provided valuable suggestions for improvements. Keywords sleep quality, child, parents, hospital, disrupters Particularly during hospitalization, the quality of Introduction sleep is important because sleep deprivation may con- Sleep is an essential daily requirement for the development tribute to impaired recovery, prolonged length of stay, and maintenance of physical and psychological health such reduced subjective well-being, and poor patient percep- as memory processing and consolidation, cellular repair, 12-14 tion of hospitalized care. Nevertheless, research 1-5 brain development, and hormonal regulation. Good sleep showed that sleep quality in hospitalized children is quality is characterized by adequate sleep duration, ade- 15-18 reduced compared with home. quate sleep quality (comprising sleep satisfaction, uninter- Studies exploring the experiences regarding chil- rupted sleep, and being fit upon awakening), and adequate dren’s sleep quality during hospitalization are scarce. A timing (a sleep schedule that fits with the natural biological qualitative study with hospitalized adolescents (13-17 6,7 rhythm, in the absence of sleep disorders). years) revealed that a lack of self-control, disease- Reduced sleep quality is associated with unfavorable related factors, and unfamiliar noises affected sleep. consequences on health and daily life. Short-term conse- One study reported on the views of parents about the quences of interrupted sleep are, for example, increased stress, emotional distress and mood disorders, and Emma Children’s Hospital, Amsterdam UMC, University of 8,9 decreased cognition and memory. Adolescents show Amsterdam, Amsterdam, The Netherlands problems with school performance and have increased Department of Internal Medicine, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands risk-taking behaviors. In addition, children are at risk of daytime sleepiness, reduced alertness, hyperactivity and *Both authors equally contributed to this work. 10,11 decreased attention, and poor emotion regulation. Corresponding Author: Long-term health consequences of interrupted sleep in Cor-Jan van der Perk, Emma Children’s Hospital, Amsterdam UMC, adults include anxiety, depression, hypertension, cardio- University of Amsterdam, Meibergdreef 9, 1105 AZ Amsterdam, vascular disease, weight-related issues, and type 2 diabetes The Netherlands. 8-10 Email: [email protected] mellitus. 2 Clinical Pediatrics 00(0) sleep quality of their child (3-12 years) during hospital- for children younger than 1 year old and therefore did ization but did not include surgical patients. Results not participate. The following inclusion criteria were showed that noise, light, and daily schedules affected used: parents of children aged 1 to 12 years rooming-in sleep. Another study focused on pediatric nurses’ for at least one night, children staying at the ward for at views on factors affecting children’s sleep during hospi- least 24 hours, and parents’ proficiency in Dutch. For talization and their most important finding was that most more unequivocal results, infants have been omitted due influencing factors were related to nursing practice and to unstable circadian rhythms. Children with known could be resolved through changed policies and mentor- sleep disorders were excluded from the study. The par- ship aimed at improving sleep for pediatric patients. ticipants were selected purposively. To reach maximum To the best of our knowledge, no study on this subject heterogeneity, we selected children with various disor- has been executed among a general pediatric hospital ders, ages, and length of stay. In addition, diversity in population. Therefore, the objective of this study was to age and sex of parents were considered. gain information on (1) the perceived quality of sleep, (2) disrupters and promoters of sleep, and (3) the role of Data Collection health care professionals in creating a healthy sleep environment for children aged 1 to 12 years during hos- Eligibility for participation was assessed by C.J.v.d.P. in pitalization, as reported by parents. collaboration with the pediatric nurses. If parents were willing to participate, the interview was scheduled to take place during admission. Methods The interviews were conducted by C.J.v.d.P., who Study Design was not involved in the care for the patients. Characteristics of children and parents (eg, sex parent/ A deductive explorative qualitative study design with patient, age, marital status, length of hospital stay, num- semi-structured interviews was used. We considered a ber of previous hospitalizations, reason for admission) phenomenological approach, the appropriate method for were retrieved at the beginning of the interview. answering our research question, as it focuses on shared Interviews took place in a meeting room or patients’ experiences and meanings among the participants using room between October 2021 and March 2022, and lasted interviews about experiences and feelings. The between 45 and 60 minutes. The interviews were audio COnsolidated criteria for REporting Qualitative research recorded and field notes were written down immediately (COREQ) was used to ensure the accuracy of the design after each interview. and execution of the study. The structure of the interviews was guided by a topic list and a semi-structured interview guide, based on 2 Setting and Participants 19,25 studies. The guide was assembled in collaboration with the research team. After 2 interviews, the interview The study was executed at Emma Children’s Hospital, data were reviewed by C.J.v.d.P. and P.B. to determine Amsterdam University Medical Center, 1 of the 7 ter- whether adjustments in the interview guide were neces- tiary care hospitals for children in the Netherlands. In sary. After updating the guide, the following interviews this hospital, children from birth to 18 years old are were executed. treated on 3 general pediatric wards, namely, an acute Data saturation was determined in a research meeting admission ward, a pediatric intensive care unit, and a in which all members agreed that no additional informa- neonatal intensive care unit. Children stay in single or tion could be derived from the interviews. Table 1 dis- double patient rooms, accompanied by one of their par- plays the topic list; the complete interview guide is ents. All rooms have sleeping facilities (a couch that can shown in Supplemental Appendix A. be converted into a bed) for parents and are equipped with toilets and showers. Every room has blackout cur- tains and a tablet on which relaxing music or lullabies Data Analyses can be played. Pedagogical supportive care provides age-related materials and care (eg, relaxing exercises, Consistent with the phenomenological approach, a music mobiles) to help the children relax and potentially qualitative thematic analysis was performed following facilitate sleep. Children are also encouraged to bring 6 steps: (1) The audio recordings of all interviews their own items from home to support sleep. were transcribed verbatim by 2 research assistants and Parents of children admitted on 2 general pediatric 2 researchers (C.J.v.d.P. and P.B.). The transcriptions wards and the acute admission ward were invited to par- were read by the research team (C.J.v.d.P., P.B., and ticipate in the study. The fourth ward focuses on the care J.M.) several times for familiarization of data. (2) van der Perk et al 3 Table 1. Topic List. Topic Parents perceptions on Usual sleep at home Usual sleep of child at home (more/less) Usual sleep of parent(s) Sleep in hospital Sleep pattern child and parent(s) Sleep during day (more/less) Differences with sleep at home Daytime functioning child/ parent(s) Experiences with prior hospital admissions Sleep promotion Examples, ie, bedtime story-telling, reading, nightlamp, soft music Influence HCP Care-related routines/other Nurses doctors/other Sleep promotion/hindering by HCP (examples) Recommendations for HCP Other environmental disrupters Promoting/ disruptive factors other than by HCP. Light, noise, movement, Other patients/parents in room Abbreviation: HCP, health care professionals. During the first stage of data collection, 2 interviews during the data collection and analyses, moving care- were coded and analyzed by C.J.v.d.P. and P.B. inde- fully back and forth between the data and the various pendently to reach consensus about the final list of steps in the analysis. The analysis was discussed by the codes. After consensus was reached, the remaining authors until agreement was reached. interviews were performed by C.J.v.d.P. The coding of To increase study dependability, the coding that these remaining interviews was checked and comple- resulted from the transcripts and the subsequent themes mented by P.B. and J.M. (3) By comparing the gener- were checked and reconfirmed by 2 researchers that ated codes with each other and re-reading the associated were not involved in data collection (P.B. and J.M.). quotes, categories were formulated. (4) In several meet- To promote conformability and transferability of ings with the research group, the categories were criti- the findings, extensive descriptions of the selection, cally discussed and adapted, constantly returning to the data collection, and analysis processes have been codes and the transcripts, until (5) consensus was described, including context and characteristics of the reached on the final themes after which (6) the final participants. research report was written. The data analysis was facil- Last, all quotes have been translated by one researcher itated by MaxQDA-software. (P.B.) and validated by all the co-authors to ensure cor- rectness and to capture the tone/intonation of the parent(s). Occasional discrepancies were solved by con- Trustworthiness (Validation) sensus discussions. Several techniques were used to increase the trustwor- thiness of the findings. Trustworthiness was estab- Ethical Considerations lished in accordance with the standard criteria for qualitative research: credibility, dependability, con- All data were treated according to the European General formability, and transferability. To enhance credibil- Data Protection Regulation and were anonymized before ity, the interviews were conducted in a quiet private analyzing and reporting. All participating parents gave environment. Immediately following the interviews, informed consent and permission to make audio record- field notes were made describing the circumstances ings. All data were stored on a secured hospital server. and nonverbal communication. Conducting multiple interviews ensured a sufficient saturation of the care- Results givers’ views about the sleep of their child. The tran- scripts and preliminary analyses of the interviews were Thirteen parents were interviewed. The audio recording sent to the participating parents, to confirm that the failed for one interview, and therefore had to be interpretations accurately reflected their views and excluded. One of the interviews was conducted with a experiences (member check). Furthermore, various parent couple. The mean age of their children was 6.9 consensus meetings were held with the research group (range = 1-12) years, and 6 of them were girls. The 4 Clinical Pediatrics 00(0) Table 2. Demographics of Participants. their opinion, sleep duration, number of awakenings, the ease of falling asleep, and bedtime were affected by the Parents (N = 12) hospitalization: Gender parent Female, n (%) 6 (50.0) If I compare it with home: when a child is ill, but without the need for hospitalization, it lays in bed in a quiet room Age mother, mean (SD) 39.0 (8.4) all day. But here [in hospital] it’s a jungle, it is chaotic here. Age father, mean (SD) 40.3 (6.8) The difference between home and hospital is very big. Marital status, n (%) (Interview 11) Married 10 (83.3) Divorced 2 (16.7) According to all parents, poor sleep quality is Patients (N = 11) explained mainly by the severity of the child’s illness. For example, awakenings were caused by pain, nausea, Gender child Female, n (%) 6 (54,5) or vomiting. Depending on the exact time of waking up Age child, mean (SD) 6.9 (4.1) during the night, children had difficulty falling back to Length of stay at interview, mean (SD) 4.3 (2.2) sleep again. Two parents indicated, however, that their No of admissions total, n (%) 5.6 (3.0) child was able to fall asleep quickly again after being No of admissions AUMC, n (%) 3.6 (2.0) disturbed. Furthermore, parents indicated that the num- Type for admission, n (%) ber of disturbances at night by health care professionals Unplanned 9 (81.8) was associated with the severity of illness: Planned 2 (18.2) And at home she also sleeps continuously through the Admission diagnosis night, whereas here I notice her sleep is disturbed more Airway infection easily. (Interview 5) Acute myeloid leukemia Surgery for appendicitis The impact on sleep during admission differed among Surgical straightening of foot (muscle the children. Some parents indicated that their child was disease) unable to sleep during the day, even when the child was Epstein-Barr/congenital bronchomalacia drowsy and tired. Others indicated that their child was Volvulus Baclofen pump placement/cerebral palsy exhausted by the poor night’s sleep causing him/her to Multi System Inflammatory Syndrome catch up sleep during daytime. As a result, the child’s fever/rash fatigue and sleepiness during the day were strongly Chronic abdominal pain influenced by the amount of sleep. In addition, daytime Noro virus—dehydration functioning seemed also impaired, where some children Respiratory syncytial virus infection had no energy to do something fun during the day due to Abbreviations: AUMC, Amsterdam University Medical Centre; n, poor nighttime sleep. Most parents did not think poor number. sleep had an impact on their child’s mood, even though they responded more emotionally due to their illness. length of hospital stay varied between 2 and 8 days. Parents said that both sleep quantity and sleep routines Nine admissions were unplanned. The admission diag- were very different in the hospital compared with home. nosis varied between the children. An overview of the In the hospital, the children usually went to sleep later. characteristics of the children and parents is presented in Some parents tried to adhere to bedtime routines from Table 2. home, but often failed due to the different circumstances during hospitalization. Parents who had been in hospital with their child Reduced Sleep Quality During Hospitalization more often, mentioned that children had to recover at The first aim of this study was to gain a better under- home from the lack of sleep in the hospital. Other par- standing of inpatient sleep before focusing on disrupters ents were confident that their children would return to and promotors of inpatient sleep and the role of health their normal sleep rhythm after discharge: care professionals (second and third aim of this study, respectively). I noticed when she [the child] comes home after discharge, she Nine parents indicated that their child’s sleep quality indeed sleeps much longer in the morning than she normally was reduced in the hospital compared with home. In does. So we always say: she needs to refuel. (Interview 2) van der Perk et al 5 Figure 1. Processing and aggregation of information. experienced that information provided about their Main Themes child’s sleeping habits were not transferred among Four main themes emerged from the interviews: (1) being health care professionals. As a result, health care profes- informed, keeping informed; (2) coordination of care can sionals did not always consider the agreements made make a difference; (3) parents as main advocate of their about the schedule and routines. Parents attributed this child’s sleep; and (4) environmental disturbers (see Figure 1). to a lack of information exchange between professionals The themes are separately described below. or to information missing in the electronic patient file. Parents suspected that important information was diffi- Being informed, keeping informed. Child’s sleep quality cult to obtain due to an overload of information. during both night and day appears to be highly depen- Parents believed that creating a plan for the upcom- dent on the communication and information exchange ing night together with nurses was beneficial for a good between parents and professionals. For example, parents night sleep. They appreciated upfront information about 6 Clinical Pediatrics 00(0) the timing of interventions during the night, such as in because you are here anyway. It is difficult to make clear appointments since you do not know how the day will turn medicine administration. In addition, they also men- out. (Interview 5) tioned that dividing care-related tasks and responsibili- ties among health care professionals and parents was Parents as main advocates for their child’s sleep. Parents valuable for better sleep quality, for example, the admin- took the role of guardians for their child’s sleep to ensure istering of medication: that the child would get as much sleep as possible. To ensure that their child feels as safe and comfortable as She [the nurse] said: “I’ll provide it [medication] to you now. If she wakes up, you can give it yourself and then we possible, they ensured that important personal items of don’t have to come in; you just let me know at what time their child (cuddly toy, pillow, sleeping bag) are taken you administered it.” . . . That makes it [moment of from home and tried to continue sleeping routines from disturbance] for her as short as possible. (Interview 9) home as much as possible in the hospital. Some parents actively discussed the organization of Parents experienced a lack of information about the care with the health care professionals in such a way that child’s program for that day, for example, diagnostic their child’s sleep would be supported. For example, testing, medicine administering. As a result, daytime some parents decided about the care they could provide naps could not be planned: themselves on times they considered best, for example, changing diapers. In this way, parents ensured that their Of course, . . . you don’t know the schedule. So, you don’t child was not unnecessarily disturbed. know exactly when things will happen. . . . Like, what time Parents mentioned being alert constantly to avoid food will arrive, what time breakfast, what time . . . That disturbances they felt were unnecessary. They some- gives peace. Having a certain routine also gives some times closed the curtains at the entrance to the patient peace. (Interview 4) room, or put up signs with the message that their child was sleeping. Unfortunately, this did not always give the In addition, health care professionals tend to walk in desired result: unannounced and at any time without taking the child’s sleeping rhythm into consideration. They came in during her sleep to bring food, and another For example, nutrition assistants were often not time the cleaner tried to enter although the curtains were aware of deviating dietary arrangements. As a result, closed. So at admission, we asked for a door sign. They children were disturbed in their sleep while they were gave us a sign that was so beautifully made that no one read not allowed to eat. it anymore, because it looked like it belonged to the interior. (Interview 1) Coordination of care can make a difference. Parents expe- rienced a lack of coordination of care, especially during Most parents were very understanding and believed the night. As a result, children were disturbed more often disturbances were necessary for their child’s care. than was necessary according to the parents. Some par- However, others were annoyed when their child was dis- ents said a good transfer from the evening shift to the turbed in their sleep but were afraid to speak up on night shift had a positive impact on the child’s sleep: behalf of their child. Parents appreciated it when nurses were advocating for their child’s rest, for example, by And then during the night, you saw right away when it was negotiating about scheduling medical examinations and well organized. For those moments we didn’t have to making sure other health care professionals did not enter remind anyone. In fact, the nurse came in and said: okay, the room during naptime. this is how it will happen tonight. Yes, that works very well! (Interview 1) Parents took great effort to ensure that the hospital room was low stimulus. For example, they tried to darken Parents indicated that they also experienced a lack of the room by putting a towel over the infusion pump and coordination between professionals of different disci- placing the monitor behind the bed curtains. Parents said plines. All professionals seemed to have their own that they sometimes stayed awake themselves to turn off schedule without consulting each other. Consequently, the alarms of the feeding or infusion pumps quickly, hop- different disciplines entered the patient room scattered ing the child would not get disturbed: throughout the day making it impossible for the child to have moment of rest: As a mother you are always very alert, because you don’t want your child to wake up unnecessarily. So, you press the Of course, the doctors only come in when they have time. alarm button quickly, and do not wait for a nurse to come in So, you cannot get that moment clear. And others . . . walk and turn off that beep. (Interview 2) van der Perk et al 7 Other parents accepted that their child woke up, the effect of a child’s physical condition on sleep qual- 18,25,28 because the alarms gave them a feeling of security that ity. Furthermore, physical discomfort could lead to their child was well looked after. passivity during the day, making it more difficult to fall asleep in the evening. Other consequences of impaired Environmental disturbers. All interviewed parents noticed sleep mentioned were inactivity, no energy to play, being that their children were exposed to many environmental drowsy, or taking more naps during the day. In contrast disturbers. Especially the sounds of monitors, infusion to previous research, parents mentioned that mood was pumps, or feeding pumps made their child wake up, but not affected by the lack of sleep. In our study, affected also lights (power outlets or nurses’ flashlights) were mood was attributed to the illness rather than the sleep disturbing. Some parents preferred the room tempera- quality. ture to be the same as the child was used to at home and Our results show the importance of getting and shar- mentioned that room temperature was sometimes ing information about the sleeping habits of the child adjusted by a nurse without consulting them. Some chil- among the health care professionals, and handing over dren were bothered by intravenous lines or monitor this information to next shifts. The child’s sleeping hab- cabling, making it difficult to fall asleep or to stay its were not often considered in the working routines. asleep. However, many children woke up briefly and fell 19,20,29 This theme was found in previous studies as well. back asleep quickly. For some children, going back to Hospitalized adolescents mentioned feeling uncomfort- sleep was dependent on the timing of the interruption. able due to the unpredictable activities by nurses at Contrary to these comments, 2 parents indicated that it night. The value of a commonly agreed schedule was was generally quiet and that the lights were dimmed on also highlighted in this study, as adolescents slept better the ward, outside the patient rooms. when they knew the schedule for the night upfront. Parents felt that many of these disrupters seemed In our study, parents indicated that a lack of coordina- unavoidable, but that they had an impact on sleep tion of care is contributing to poor sleep. This is a persis- quality: tent, yet potentially modifiable finding that is in line with a systematic review among adult patients describ- That thing [infusion pump] will sometimes beep for ing that the extensive network of nurses, doctors, and minutes. Yes, of course I sleep terribly because of that, and other health care professionals involved in the care, she [the child] was also bothered by it. . . . These things are influenced the sleep quality of patients. annoying, but because we are in hospital, it cannot be To our knowledge, this is the first study reporting on avoided, I think. (Interview 6) the importance of parents acting as guardians of their child’s sleep, for example, by reducing the number of Parents also suggested solutions to several disrup- interventions during the night, and by creating a low- tive noises. For example, a mother mentioned another stimulus environment. Another study reported that ado- hospital having the drip and feeding pumps outside the lescents found it reassuring that a parent stayed patient room. One father indicated that he did not under- overnight, but this was attributed to seeking an attach- stand that the alarms of the monitor could not be turned ment person. Parents’ role to advocate for their child’s off, as these alarms are sent to the nurse’s beeper system sleep was not found in previous research. Parents’ feel- anyway. ing they have to act as guardians on behalf of their chil- dren could be associated with the lack of information Discussion exchange between them and health care professionals. In this study, the perceived quality of sleep, disrupters Environmental factors were considered important and promoters of sleep, and the role of health care pro- disrupters of sleep. Parents mentioned intravenous lines fessionals in creating a healthy sleep environment for or monitor cables resulting in a limited range of motion hospitalized children were explored. The results from 12 and hampering sleep. In addition, major disrupters of interviews with parents show that children’s sleep qual- sleep were noise and light. These findings are in line 17,19,20,25,28,30-33 ity is impaired during hospitalization. Four themes with previous research. However, parents emerged from the interviews: (1) being informed, keep- indicated that health care professionals attempted to be ing informed; (2) coordination of care can make a differ- quiet and avoid light stimuli, but unfortunately, often ence; (3) parents as main advocates for their child’s with insufficient results. sleep; and (4) environmental disrupters. Parents made recommendations for improvement According to most parents, physical discomfort had a such as putting a sign on the door. Some parents recom- big influence on the inability to fall asleep or to stay mended bundling of care and providing a day schedule asleep during the night. Prior research also reported on on paper, so the child and parents would know what to 8 Clinical Pediatrics 00(0) expect. Previous studies also report on organizational duration of sleep. In addition, more information is and environmental improvements, such as coordinated required regarding the factors (environmental, disease- staff, daily schedules and the bundling of care, blackout related, care-related, patient-related) that affect inpatient 19,20,25 curtains, and better room temperatures. sleep. More knowledge is needed on the consequences of poor sleep quality, for example, on the recovery time of children after hospitalization. Strengths and Limitations A strength of this study is the heterogeneous sample of Acknowledgments participants of clinically admitted children with their We would like to thank Roos van der Laan and Denise parents. Child’s age varied and sex was equally distrib- Roffelsen for transcribing the recorded interviews. uted. In addition, an equal distribution in participation of fathers and mothers was achieved. Another strength of Author Contributions this study was the consideration of researcher bias, CJvdP: Conceptualization, methodology, formal analysis, inves- where we made sure the interviewer had no treatment tigation, writing - original draft, visualization, project adminis- relationship with the interviewed parents and their child. tration, validation. PB: Conceptualization, writing – original A limitation of this study is the use of proxy reports: draft, writing review/editing, methodology, formal analysis, vali- The parents were asked about the experiences and per- dation, visualization. JM: Conceptualization, methodology, vali- spectives of sleep of the admitted children instead of the dation, formal analysis, writing - review & editing, validation, supervision. RJBJG: Conceptualization, writing - review & edit- children themselves. It is possible that parents’ own ing, validation, recources, funding acquisition. sleep quality influenced the perspective on the sleep quality of the child. To reduce this risk, we explicatively Declaration of Conflicting Interests asked parents about their sleep quality besides their per- spectives of their child’s sleep. The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article. Conclusions Funding The sleep quality of children admitted in hospital is sub- stantially less than at home. This may be explained by The author(s) disclosed receipt of the following financial sup- port for the research, authorship, and/or publication of this the child’s physiological or mental state, care-related article: This study was partly financed by internal research activities, and environmental factors. Due to inadequate grant 8727, Amsterdam UMC, the Netherlands. communication and coordination of care, the quality of sleep of the children is regularly compromised. Parents Ethical Approval have an important role in facilitating their child’s sleep during admission. Approval for the study was obtained from the Institutional Review Board of the Academic Medical Center (W21_395 # 21.440). Recommendations ORCID iDs Children’s sleep in hospitals may be improved by facili- tating sleep and embedding sleep-awareness in daily Cor-Jan van der Perk https://orcid.org/0000-0003-3024-4068 care. The child’s sleep routines should be communi- Pia Burger https://orcid.org/0000-0001-7780-1437 cated clearly among all persons involved in the care and documented in the patients’ medical record. 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Journal

Clinical Pediatrics – SAGE

Published: Jun 1, 2024

Keywords: sleep quality; child; parents; hospital; disrupters

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