Factors influencing sleep for parents of critically ill hospitalised children: A qualitative analysis

Intensive and Critical Care Nursing (2011) 27, 37—45

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ORIGINAL ARTICLE

Factors influencing sleep for parents of critically ill hospitalised children: A qualitative analysis Robyn Stremler a,b,∗, Zahida Dhukai a, Lily Wong a, Christopher Parshuram b a b

Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, Canada The Hospital for Sick Children (SickKids), Toronto, Canada

Accepted 9 November 2010

KEYWORDS Sleep; Parents; Critical care; Child; Hospitalised

Summary The aim of this study was to describe factors affecting the sleep of parents of critically ill children and to determine strategies used to improve their sleep. One hundred and eighteen parents of 91 children recruited during their child’s paediatric intensive care unit stay responded in writing to open-ended questions assessing their experiences with sleep and eliciting ideas for strategies to promote sleep to be used by parents and provided by hospital staff. Patterns and concepts were coded and organised into themes using a qualitative descriptive approach. Seven themes emerged related to influences on and strategies to improve sleep: (1) the child’s condition; (2) being at the bedside or not; (3) difficult thoughts and feelings; (4) changes to usual sleep; (5) caring for self and family; (6) the hospital environment and (7) access to sleep locations. Parents described multiple, often competing, demands that affected their ability to achieve sleep, regardless of location. Many more factors that influenced sleep were described than strategies to improve sleep, highlighting the need for nurses to explore with parents the unique barriers and facilitators to sleep they encounter and to develop and rigorously test interventions to improve sleep. © 2010 Elsevier Ltd. All rights reserved.

Introduction Given the shift in paediatric hospitals towards familycentred care, many parents spend the night with their

Abbreviation: PICU, paediatric intensive care unit. Corresponding author at: Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, 155 College Street, Suite 130, Toronto, Ontario, Canada M5T 1P8. Tel.: +1 416 978 6925; fax: +1 416 946 8681. E-mail address: [email protected] (R. Stremler). ∗

hospitalised child. Decreases in sleep quantity and quality are associated with degraded mood (Dinges et al., 1997; Stepanski, 2002), poor performance on psychomotor tasks (Bonnet, 2005; Carskadon and Dement, 1981) and impairments of advanced cognitive functioning and decision-making (Harrison and Horne, 2000) and have been observed in parents with a child in hospital (McCann, 2008; Stremler et al., 2008a). For parents who are already challenged by their child’s health condition, sleep is important for their own physical and emotional health, their ability to cope with the illness event, support their child and other family members, participate in decision-making and main-

0964-3397/$ — see front matter © 2010 Elsevier Ltd. All rights reserved. doi:10.1016/j.iccn.2010.11.001

38 tain relationships. A number of factors may affect quality and quantity of sleep for parents whilst their child is hospitalised, but these remain unexplored in the literature. Parents who stay with their child overnight are attempting to sleep in a new environment primarily focussed on patient care rather than parent sleep. In the paediatric intensive care unit (PICU), this environment is characterised by high levels of light and noise and frequent interruptions from health care providers. These factors, combined with the unusual situation of achieving and maintaining sleep in a public environment during times of high stress and anxiety due to the child’s condition may lead to difficulty in falling asleep or waking multiple times during sleep, either at home or in hospital. An understanding of the effects of sleep disturbance for parents whilst their child is hospitalised, and the factors involved in this sleep disturbance is the first step in moving towards development of strategies and interventions to decrease sleep disturbance and its negative health outcomes. Parents have never been asked to identify barriers and facilitators of sleep or their use of and suggestions for strategies to reduce sleep disturbance whilst their child is hospitalised. As part of a larger study aimed at determining sleep quantity and patterns in parents of critically ill hospitalised children we elicited qualitative data to better understand factors influencing parental sleep and to determine strategies used and suggested by parents to improve their sleep whilst their child was hospitalised.

Methods We performed a prospective, observational study of parents’ sleep quality and quantity using objective and subjective measures of sleep; this paper reports on qualitative data elicited from parents regarding their experiences and recommendations.

Participants, recruitment and setting From April to September 2007, a convenience sample of parents with a child admitted to the 36-bed PICU of a tertiary care, research-intensive paediatric hospital was recruited. Research assistants consulted with PICU staff each weekday to determine which parents were eligible to be approached for participation. Eligible participants were parents or legal guardians of a hospitalised child under the age of 18 years expected to be admitted to the hospital for at least five nights including at least two nights in the PICU; eligible parents were enrolled regardless of their intended sleep location. Parents were excluded if they had a diagnosed sleep disorder or were unable to read or understand English. Parents were not encouraged to sleep at the child’s bedside in the PICU and sleep surfaces such as fold-out beds were not routinely provided for parents at the bedside. However, parents sometimes chose to sleep sitting in a chair at the bedside or in the child’s bed, if a parent advocated strongly for themselves, a fold-out bed was sometimes provided for a parent with a child in an isolation room. Seven private parent rooms with shared bathrooms were available on the same floor as the PICU. Private parent room assignments were reassessed each day based on new admissions,

R. Stremler et al. patient acuity and previous use of the rooms. Twenty-eight low-cost residential rooms within walking distance of the hospital were available to families living more than 70 km away; these rooms were accessed by all units in the hospital, thereby limiting availability.

Procedures Institutional Review Board approval was obtained from the hospital and its affiliated university. As part of a larger, prospective, observational study measuring parents’ sleep quantity and quality using actigraphy and sleep diaries, participants provided baseline information regarding the child’s current admission and demographic information. Participants’ sleep was measured over five days and nights; recording began in the PICU setting and continued on the general hospital unit if the child was discharged from the PICU. Following the final night of sleep measurement, participants were asked to provide written answers to openended questions regarding their experiences of sleep during their child’s hospitalisation. These responses were recorded on data forms with only an identification number and no personal identifiers, which the participants were able to seal prior to handing over to the research nurse to take to the data entry clerk. The questions appeared on two pages in the same order for all participants: 1. It is often difficult to sleep whilst your child is in hospital. What things got in the way of sleeping well for you? 2. What things helped you get sleep whilst your child was in hospital? 3. What things would you suggest other parents should do to help them sleep better when their child is in the hospital? 4. What could the staff or the hospital do to help you sleep better when your child is the hospital? By asking parents to describe their sleep experiences in terms of barriers and facilitators to sleep, as well as strategies parents and staff could use to improve sleep, we hoped to encourage parents’ examination of sleep issues from varying perspectives. We presumed that such triangulation of questioning would provide richer data on the topic and allow us to gain information regarding multiple influences on parental sleep.

Coding and analysis Qualitative analysis of the written responses was conducted using qualitative descriptive methodology, which aims to comprehensively describe and summarise a phenomenon in everyday terms (Sandelowski, 2000). This approach to qualitative data analysis is most appropriate when existing literature on a phenomenon is limited. Two researchers first read all responses to become immersed in and familiar with the data, which assisted in understanding and code development (Berg, 1995). The researchers made notes to assist in organising initial thoughts and understandings of parents’ experiences and set aside personal assumptions to maintain neutrality and limit use of preconceived categories. For each question, the researchers independently generated and applied codes to the raw data. To assist in code

Factors influencing sleep for parents of critically ill hospitalised children: A qualitative analysis development, each researcher made notations on the raw data files, using direct quotes or standard terms to describe the phenomenon highlighted by the participant’s response. Codes were generated inductively, based on key concepts and recurrent ideas revealed from the data, with notations made regarding the frequency and specificity of responses (Sandelowski, 2000). The two researchers individually generated codes and using an iterative process, met to review and consolidate codes where repetition and overlap existed, develop consensus where differing codes had been used, and confirm consistency of coding as new insights to the data developed (Miles and Huberman, 1994). Responses to single questions often were assigned multiple codes given the numerous ideas expressed by the parent. After completion of coding, codes were organised by the two researchers into broad themes to describe larger concepts and give an over-arching description and coherence to the data; these larger themes were revealed across the four questions. The number of male and female participants who contributed responses in each coding category was recorded as a way of determining pervasiveness of responses and effects of gender. A third researcher not involved in the initial coding was asked to code a portion of the data to provide a check of validity of the coding classifications. The third researcher and one other reviewed the grouping of codes into themes. There was virtually complete agreement between the third researcher and the first two reviewers’ coding decisions. In the four instances in which initial codes were not agreed upon, consensus was reached through group discussion. The organisation of codes into themes was accepted by both secondary reviewers. Descriptive statistics were used to characterise the sample and the distribution of sleep locations recorded in the participants’ sleep diaries.

Results Participants Of the 204 eligible participants approached, 118 (58%) parents of 91 children provided informed consent. Of parents who did not want to participate, 33 (38%) were not interested in being in a research study, 33 (38%) felt they were too busy to participate, 17 (20%) felt they were too worried about their child to participate, 2 (2%) did not want to wear the sleep measurement equipment required for the quantitative portion of the study and one parent’s (1%) reason for refusal was unknown. No other data were collected from parents who refused. Characteristics of participating parents and their children are shown in Tables 1 and 2, respectively. The mean length of hospital stay at the time of enrolment in the study was 4.7 days (SD 12.7) with a median of 2 days. Of the 497 parent nights with information about sleep location, 38% (190 nights) were at home, 41% (203 nights) were in a parent room in the hospital or in a nearby hotel or residence designated for parents, 12% (59 nights) were at the child’s bedside, 8% (40 nights) were in a hospital lounge or waiting room and 1% (5 nights) were in the child’s bed. Responses to at least one of the four open-ended questions on the final questionnaires were completed by 114 (97%) parents.

Table 1

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Characteristics of study parents (n = 118).

Relationship to child, n (%) Mother Father Age (years) of parent, mean (SD) Mothers Fathers Race, n (%) Caucasian Asian Black Aboriginal Hispanic Other Education completed, n (%) University or college High school Less than high school

74 (63) 44 (37) 33.6 (7.6) 35.0 (6.5) 82 (69) 20 (17) 4 (3) 4 (3) 2 (2) 6 (5) 84 (72) 26 (22) 6 (5)

Parental sleep Seven themes emerged related to influences on and strategies to improve sleep for parents with a critically ill hospitalised child: (1) the child’s condition; (2) being at the bedside or not; (3) difficult thoughts and feelings; (4) changes to usual sleep; (5) caring for self and family; (6) the hospital environment and (7) access to sleep locations (Table 3). There were no notable differences between the frequency of codes for mothers and fathers across themes. Sample quotes are reported in italics for clarity with the parent’s study number in brackets; numbers beginning with 1 are mothers’ responses and those beginning with 2 are fathers’ responses. Theme 1: Child’s condition Many parents indicated that uncertainty and worry over their child’s health, changes in their child’s condition and lack of knowledge of their child’s health influenced their sleep. Whilst worry about their child had a negative influence on sleep, parents reported that changes in their child’s condition could affect their sleep either positively or negatively: ‘‘My condition is directly sympathetically related

Table 2

Characteristics of children (n = 91).

Age (years), n (%) <1 1—3 4—5 6—12 13—18 Reason for hospital admission, n (%) Acute illness or trauma Exacerbation of chronic illness Planned surgery Unknown

56 (62) 8 (9) 6 (7) 9 (10) 12 (13) 28 (31) 26 (29) 35 (39) 2 (1)

40 Table 3

R. Stremler et al. Identified themes, influencing factors and suggested strategies for parental sleep whilst a child is hospitalised.

Theme

Factors influencing sleep

Recommended strategies for parents

1. Child’s condition

(−) Uncertainty/worry over child’s condition (−) Not enough information about child’s condition (+/−) Changes in child’s condition (+) Reducing knowledge gap through reports (−) Meeting child’s care needs

Seek information about Assure parents that staff will child’s condition call parents with updates Stay in contact with unit for Improve communication with reassurance family about child’s condition

2. Being at the bedside or not

(−) Keeping watch over child (−) Guilt or worry of child being alone (+) Participating in child’s care

3. Difficult thoughts and feelings

(−) Helplessness (−) Loneliness (+) Keeping emotions in check (+) Positive thinking (+) Support from others (+) Talking and sharing with others (+) Spirituality 4. Changes to usual sleep (−) Late bedtime and early wake time (−) Lack of routine (−) Caffeine (−) Traveling long distances (−) Unfamiliar sleeping conditions (−) Poor quality sleep (−) Physical pain (+) Medications (+) Routine (+) Sleeping near partner (+) Distraction (e.g. television, music, books) (+) Familiar sleep supplies (+) Emotional and physical exhaustion 5. Caring for self and (−) Concerns or demands of other family family members (−) Many things to organise

6. The hospital environment

Be with child Trust in the staff Be involved in child’s care Distance yourself from hospital

(+) Being with or sleeping near child (+) Feeling the child is in good hands (+) Having a place to sleep away from the hospital (−) Unable to clear mind Keeping emotions in check (−) Worrying about future (−) Anticipating bad news

(−) Financial or work concerns (+) Taking shifts to share care (+) Financial assistance (+) Permission to care for self (+) Caring for self (e.g. exercise, eating well) (−) Noise

Recommended strategies for health care professionals

Positive thinking Talking and sharing with others Seek out support Rely on spirituality

Arrange support groups for parents Get to know family Demonstrate caring, compassion

Have a routine Take medication Bring familiar sleep supplies Exhaust yourself Distract yourself

Care for yourself Take shifts Limit daytime visitors Be organised

Take steps to reduce noise

Encourage and inform parents about sleep Improve hospital amenities for parents Reduce expenses for parents

Reduce sound

Factors influencing sleep for parents of critically ill hospitalised children: A qualitative analysis

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Table 3 (Continued ) Theme

Factors influencing sleep (−) Light (−) Interruptions (−) Temperature

7. Access to sleep options

(−) Uncomfortable sleep surface or accommodations (+) Reduced noise (+) Reduced light (+) Privacy (+) Comfortable temperature (+) Sleep supplies and comfortable sleep surfaces (−) Not enough space or places for parents to sleep (+) Good accommodations

to how he’s doing. Overall that is the biggest, when he was doing well, I was okay. When he was critical or not doing well I was very anxious and not able to sleep.’’ (1-034) Lack of information about the child’s condition limited parents’ ability to sleep and many parents suggested seeking out information as much as possible as a way to improve sleep: ‘‘Having the comfort that we had constant access — 24hr contact with his nurse to receive updates in regards to his condition (helped to improve sleep).’’ (1-087) Parents recommended that hospital staff could take steps to improve communication with parents to improve sleep: ‘‘Make sure parent are better informed. I have met a couple of nurses that are just wonderful and take the time to explain everything that’s going on plus some things that I might expect to happen in the weeks to come. Others wait for me to know what questions to ask which leaves me feeling very helpless and alone.’’ (1-039) Theme 2: Being at the bedside or not Parents described being at the bedside and sleeping away from their child as both facilitating and interrupting sleep. Whilst being present at the bedside to tend to the child’s physical and emotional needs was described by some parents as limiting their time for sleep, other parents felt that their involvement in care provided them with more reassurance and made it easier for them to sleep at night. A need to keep watch over their child and their child’s care prevented some parents from leaving their child’s bedside at night, which prevented good parental sleep: ‘‘Feeling like each time I left my daughter that things would change her status dramatically. Also, I became paranoid to leave because there were so many doctors coming and going and I worried about missing one of them.’’ (1-086) Other parents expressed that they were able to sleep better at the child’s bedside, taking comfort in the proximity to the child and ‘‘. . ..being able to sleep while touching him or have him touching me.’’ (1-009) For some parents who

Recommended strategies for parents

Recommended strategies for health care professionals Reduce light Monitor use of shared spaces Provide sleep supplies and comfortable beds

Request parent room on unit Provide improved accommodations Arrange good Provide more places to sleep accommodations or rest at bedside Help parents find good accommodations

did not stay at their child’s bedside at night, guilt and worry that the child was alone or might ask for them kept them from sleeping well: ‘‘. . ..knowing that a nurse was with him all night, worried he might come to and ask for me. . ..’’ (1-089) whilst those parents who expressed confidence in their child’s caregivers were able to achieve sleep: ‘‘The fact that my child was in good hands and getting the best of care (helped me to get good sleep).’’ (1-008) Parents also suggested that having a comfortable place to sleep away from the hospital contributed to good sleep and provided an important opportunity to have a break: ‘‘Sleeping at hotel instead of on couch at hospital — the small distance helped us gain perspective of any negative issues.’’ (1-035) Theme 3: Difficult thoughts and feelings Many parents reported that difficult thoughts and feelings whilst their child was hospitalised interfered with their sleep. Parents expressed that they were unable to clear their minds and were ‘‘Constantly thinking about things regarding what happened, how it happened, and why it happened.’’ (1-066). Several parents reported anticipating bad news at night with one father stating: ‘‘Night time is the hardest, fear the phone will ring, lay there thinking upon waking.’’ (2-007) Helplessness and loneliness for ‘‘. . .real life back home. . ..’’ (1-012) were other feelings listed as interfering with nighttime sleep. Parents described managing difficult feelings by ‘‘Keeping my emotions in check.’’ (1-040) or by using positive thinking: ‘‘Before I go to sleep I think about life with him out of hospital healthy. How much I’ll spoil him. About traveling as a family visiting friends and about the food choices to feed him.’’ (1-058) Support from family, friends, other parents with a child in hospital and hospital staff and talking and sharing feelings were seen as essential to improving sleep: ‘‘Having our daughter — first child — come and visit and we all would take

42 a nap in our hotel room.’’ (1-087) Other parents stated: ‘‘If I get everything out as it happens and at the end of the day if I don’t get overloaded and I can sleep better.’’ (1-038) and suggested: ‘‘Talk to other parents with kids that are in the hospital at the same time. They are going through the exact same thing sometimes and it is unbelievable how well they understand what you’re going through.’’ (1-061) Spirituality and faith were mentioned by parents as helping them achieve better sleep through prayer, meditation and participation in religious services. Parents suggested that hospital staff could help them with emotions, and thereby improve sleep, at this difficult time by getting to know the family and demonstrating caring and compassion: ‘‘At times we felt we were too clinical and saw only his condition as opposed to seeing him as a PERSON with that condition.’’ (1-035) Theme 4: Changes to usual sleep habits Parents reported that changes to their usual sleep habits interfered with their ability to achieve sleep. Parents noted that long travel times to accommodation and spending time at the hospital left ‘‘not enough time for sleep — staying late at the hospital and coming in early cuts in to a lot of sleeping time.’’ (1-003) Use of caffeine to maintain wakefulness through the day was seen to disturb sleep at night. Lack of regularity in parents’ schedules disturbed the ability to sleep well and parents recommended trying to establish a routine for visiting, eating, sleeping and waking. Sleeping in unfamiliar surroundings was difficult for parents and they found bringing sleep supplies such as pillows and blankets from home as well as sleeping near their usual bed partner to be helpful. When sleep was achieved it was not of the same quality as experienced prior to their child’s hospitalisation: ‘‘Falling asleep not an issue. Waking up at intervals disturbed sleep as did waking up earlier than usual, not regaining sleep.’’ (2-005) ‘‘Sleeping felt like it was just the body physically shutting down but you don’t really sleep. I mean you wake up feeling more exhausted and drained than when you closed your eyes.’’ (1-090) Parents sometimes experienced physical discomfort that interfered with sleep and some parents felt that medications to induce sleep were helpful. Parents also reported that mental and physical exhaustion helped them sleep at night whilst their child was hospitalised: ‘‘Being emotionally drained constantly was very tiring, so by the time I put my head down, it was easy to fall asleep.’’ (1-066) It was suggested that other parents ‘‘try to find something to do to free your mind from things a little bit’’ (2-070) such as reading, listening to music or watching movies or television. Theme 5: Caring for self and family The need to take care of oneself and other family members influenced parents’ sleep. Parents noted that concerns over other children and spouses, specifically their coping and whether their needs were being met whilst the parent was with the hospitalised child, interfered with sleep. These multiple demands made parents feel they had ‘‘. . .a million things to do to organise things.’’ (1-022) Strategies suggested by parents to reduce these demands and increase opportunities for rest included using other family members

R. Stremler et al. to spend time with the hospitalised child and limiting daytime visitors. Financial demands of parking, lodging away from home, lost time from work and eating away from home interfered with sleep. Parents suggested seeking financial support when available from social programs and family members and recommended that hospital programs better provide parents with low cost options for food and accommodation and increased access to amenities such as phones, internet, television, secure storage of personal belongings and shower facilities. Parents described the importance of caring for themselves in order to achieve good sleep, through exercise, healthy eating and taking opportunities for rest. One mother wanted other parents to: ‘‘. . .understand that if they are not taking care of themselves they cannot care for their child. I learned this the hard way.’’ (1-067) Other parents noted that caring for oneself was advice that needed to be given to parents in order to promote sleep: ‘‘Having staff tell me that I need to take care of myself (helped me get sleep). Mothers need to be TOLD that it’s OK to leave.’’ (1039) Some parents wanted advice and encouragement from hospital staff related to sleep including information about when the best time to leave the child would be, that sleep was important for parental health, and that parents could anticipate sleep to be more difficult during their child’s hospitalisation. Theme 6: The hospital environment Elements of the hospital environment that parents felt interfered with sleep included excessive light and room temperatures that were too hot or cold. Many parents commented on excessive noise levels in hospital, describing sources as equipment within patient rooms, conversations and doors slamming outside the rooms, walking in the halls and overhead paging systems. Parents had suggestions for limiting noise in the hospital environment including providing ear plugs, reducing overhead paging, using vibrating paging systems and maintaining door seals and guards to prevent jarring. Interruptions for care of the child, including for procedures and assessments, as well as from cleaning staff also got in the way of parents’ sleep. Many parents found it difficult to sleep given the lack of provisions for sleep (e.g. pillows and blankets), and uncomfortable sleep surfaces and accommodation available on the unit: ‘‘There was no comfortable space near my child to even doze. . . and that made things difficult.’’ (1-086) ‘‘It is uncomfortable. . .to sleep on a couch with strangers in the same room.’’ (2-045) Parents suggested that privacy was needed for sleep and in situations where they had to share accommodation for sleep such as in a waiting room, parents wanted staff to monitor shared space so that cleanliness, quiet and dim lights were maintained. Theme 7: Access to sleep options Parents noted that there were not enough places for parents to sleep, at the child’s bedside, in private ‘‘parent’’ rooms or at low-cost residences near the hospital. Parents vividly described their struggles to find a place to sleep and the uncertainty of maintaining a place to sleep given the demand for rooms: ‘‘I was DESPERATE to sleep and didn’t have anywhere to sleep! I ended up curled up on the 2

Factors influencing sleep for parents of critically ill hospitalised children: A qualitative analysis seater couch in someone else’s little quadrant (of the waiting room).’’ (1-006) Another parent felt a ‘‘constant fear of loosing (sic) our room, and not knowing where we will sleep next.’’ (1-002) Parents advised that advocating for oneself to secure a room in hospital was essential and should be initiated as soon as possible in the child’s hospital stay. Parents wished for assistance from hospital staff through provision of timely information on options, costs, and locations of accommodation and support around securing somewhere to stay: ‘‘Don’t make us feel guilty about not sleeping unless you can provide a place to do it.’’ (1-032)

Discussion Examining these qualitative data extends our understanding of parents’ experiences sleeping whilst their child is critically ill. Parents described multiple, often competing, demands that affected their ability to achieve sleep, both positively and negatively, and regardless of location. The unit in which the study was conducted does not routinely encourage parents to stay overnight at the bedside. This is reflective of findings from our survey of North American paediatric hospitals, in which only 66% of PICUs allowed parents to stay overnight and overnight stays were further restricted depending on the number of children in the room and the acuity of the child, with most centers only allowing one parent to stay (Stremler et al., 2008b). Although there are reports in the literature of the child’s condition and related stress and parental role alteration as major concerns for parents with a critically ill child (Board and Ryan-Wenger, 2000; Farrell and Frost, 1992) ours is the first study in which parents describe these factors as having a significant influence on their ability to achieve sleep. Whilst parents of children living with chronic illness have identified stress and aspects of their child’s care as interfering with sleep at night (Meltzer and Moore, 2008), parents with a child in the PICU have identified many more barriers to their sleep related to the hospital environment, the changes imposed to usual life by the hospitalisation and difficult decisions related to staying with their child at night. Given the emotional and psychological benefits of improved sleep, efforts to address these areas of concern for parents could result in better ability to cope with the child’s hospitalisation through modulation of emotions, more effective communication, better retention of information and contributions to decision-making. Parents reported a great deal of distress resulting from their child’s stay in the PICU. Although the largest factor influencing this distress is the child’s illness trajectory, parents described modifiable factors towards which health care professionals could target interventions such as routine calls to the units when at home, thorough informative reports and updates at regular intervals. Given the influence of difficult thoughts and feelings, parents could be taught cognitivebehavioural strategies to improve coping and sleep quantity and quality. Techniques such as negative-thought stopping, relaxation training and deep breathing may be useful in dealing with intrusive thoughts and worry and could help parents fall asleep and return to sleep faster (Morin et al., 2006). Brief interventions focussed on such cognitive strategies to

43

improve sleep with family caregivers of adults have resulted in improvements in sleep quality and quantity (Carter, 2006; Cohen and Kuten, 2006) and could be tailored for parents with a critically ill child in hospital. Given parents’ suggestions for coping with difficult emotions, nurses could facilitate support groups with other parents, provide links to hospital chaplaincy staff to meet spiritual needs and encourage parents to mobilise their own social support network to be able to talk and share their feelings with others. Parents’ need for support from health care professionals suggests that they should be considered co-clients of care (Callery, 1997); this is consistent with familycentered care principles (Shields et al., 2006). However, additional demands on health care professionals’ time to provide care to parents must be considered from a financial and organisational perspective. Furthermore, hospital staff understanding of the nature of their relationship with the parent of the hospitalised child needs to be better delineated and communicated to all parties (Ygge and Arnetz, 2004). Since parents reflected that changes to their usual habits had negative effects on sleep, provision of sleep hygiene advice such as maintenance of regular bed and wake times and limiting caffeine and nicotine use may be helpful in this regard (Stepanski and Wyatt, 2003). Nurses should understand that parents may stretch themselves to their physical and emotional limits in an attempt to exhaust themselves so that sleep is inevitable. This has implications for parents’ ability to modulate their emotions, retain information and respond to the challenges of their child’s hospitalisation. Parents with a child in the PICU experience multiple demands that drain their emotional, social and financial resources and relate these demands to difficulty in achieving sleep. They also were clear in their assertions that assistance from hospital staff in reducing these demands would be appreciated; out-of-pocket costs for parents who have a child in the PICU are high (Wasserfallen et al., 2006). Parents recognised that they need to take care of themselves but may find it difficult to do so and may need permission and assistance from health care professionals through opportunities for sleep, healthy eating and exercise. Reflecting to parents our finding that others in their situation found that self-care helped them better support their child may be more effective than simple admonishments to get sleep or take a break from the hospital. Elements of the hospital environment that get in the way of patients achieving sleep, including excessive light, noise and interruptions (Aaron et al., 1996; Al-Samsam and Cullen, 2005; Corser, 1996; Freedman et al., 2001), also impair parents’ ability to sleep, whether they are at the child’s bedside, in a separate parent room in the hospital or in a shared space such as a waiting room. Attention to making surroundings more comfortable and tailoring the timing of interventions and assessments to maximise parental sleep are important interventions for PICU care providers to consider. Patient safety concerns and demands for care in a high acuity PICU environment are at odds with the need for child and parent rest. The tension between preservation of an environment for sleep embedded within an environment of high technology and acute care merits further examination. Eliciting health care professionals’ views on the tension

44 between providing care and preserving sleep and their ideas on how to achieve both is an important next step towards improving sleep in hospital. Parents wished for more assistance from hospital staff to ensure that they had a place to sleep and more options with respect to places to stay near their child. Family-centred care guidelines suggest that parents should have 24-hour access to their child and be given provisions to do so (Shields et al., 2006). There exists evidence that provision of an environment that allows for parents to sleep with their child in the PICU environment may reduce parental stress. Parents with a child in a PICU prior to changes to provide parent beds in the child’s room had significantly higher stress scores than parents with a child in the PICU after these changes to the environment were made (Smith et al., 2007). Although Smith et al. (2007) did not measure parental sleep, many of the parents we surveyed wished for the ability to sleep near their child and also linked separation from their child as something that challenged their ability to achieve good sleep. It may be that additional sleep serves to reduce stress experienced by parents, but this needs to be confirmed by studies that measure parents’ sleep under equivalent sleep conditions at the child’s bedside and elsewhere. Proximity to the child and involvement in the child’s care at night was described as both something that helped, as a way to know more about the child’s condition and hindered sleep, given the noisy environment and frequent interruptions. Before overnight stays by parents can be recommended as best practice in the PICU, further research is needed to determine the implications for parent sleep quality and quantity as well as stress and other psychological outcomes. If parents are expected, or perceive that they are expected, to be involved in their hospitalised child’s care this may interfere with the parents’ ability to achieve sleep. Further exploration of health care professionals’ views of parental involvement in care at night is needed. Parents described a struggle with deciding to stay at the bedside or not and the influence of various factors including the child’s condition, their faith in the staff, available social supports, and how the decision would be perceived. Interestingly, parents did not have any suggestions for how the hospital staff could help with this challenge. One parent felt that what helped her sleep was being ‘‘comfortable in my choice/decisions of whether to stay.’’ (1-059) Hospital staff may be most helpful in acknowledging the difficulty in deciding to stay, exploring with parents possible options to make the decision easier and supporting parents once the decision is made.

R. Stremler et al. questions openly and honestly in writing. Future research could expand on our approach to include in-depth interviews or focus groups and should include parents whose children are on general paediatric units as well as units which routinely encourage parents to stay overnight at the bedside and provide facilities to do so. Most parents in our study were recruited early in their child’s PICU admission; future research should examine parents’ experiences with sleep after longer in-hospital stays and ability to return to normal sleep post-discharge, given that the experience of having a child in the PICU can result in lasting traumatic stress symptoms (Balluffi et al., 2004). Also, given the cognitive and emotional demands of their child’s recent hospital admission, parents may have experienced difficulty responding to our questions and been less able to suggest strategies to be used by other parents or suggested by health care professionals.

Conclusions Parents’ views on factors that influenced their sleep and strategies that might improve sleep were not homogeneous but many common themes were found. The aim of qualitative research is not to generalise to all parents, but to identify the range of responses that individuals offer to capture multiple perspectives on a phenomenon. Our study extends our understanding of barriers and facilitators of parents’ sleep whilst their child is critically ill. Parents eloquently described how emotional struggles, changes to usual lifestyle and the hospital environment affected their ability to sleep well. Mothers and fathers were able to describe many more factors that influenced sleep than strategies to improve sleep. This gap highlights the need for health care professionals to explore with parents the unique barriers and facilitators to sleep that they encounter so as to best recommend strategies known to improve sleep in other populations. Given that sleep disruptions may contribute to negative psychosocial and health outcomes in parents with a critically ill child, future research should develop and rigorously test the effects of interventions on objectively measured sleep for parents.

Conflict of interest We have no conflict of interest to disclose.

Funding sources Limitations We did not collect any demographic data on parents who did not wish to enter the study, so we are unable to determine if parents who refused were different than those who participated. Written responses to our study questions may have limited the information parents provided; more detailed responses may have been achieved in a face-toface interview where probes could have been used to elicit further information. However, since we collected written responses sealed in envelopes without any identifying information, parents may have felt more able to answer our

Dr. Stremler received funding for this project through the Connaught Fund, University of Toronto and the Canadian Institutes of Health Research (CIHR) Randomised Controlled Trials Mentoring Program. Dr. Stremler is recipient of a CIHR New Investigator Award. Dr. Parshuram is recipient of a Career Scientist Award from the Ontario Ministry of Health and Long Term Care and an Early Researcher Award from the Ontario Ministry of Research and Innovation. Study sponsors had no involvement in any aspects of study design, collection, analysis or interpretation of data, writing or submission of the manuscript.

Factors influencing sleep for parents of critically ill hospitalised children: A qualitative analysis

Acknowledgements We are indebted to the families who so willingly gave of their time and shared their experiences with us. We also thank the staff of the critical care unit who facilitated our work.

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