![ORCID Icon]({"type":"image","src":"/templates/jsp/_style2/_tandf/images/orcid.svg"} "ORCID Icon"){kind=small}
https://orcid.org/0000-0002-5595-5774
ABSTRACT
ABSTRACT
The aim of this study was to explore parents’ experiences of sleep and rest while admitted to hospital together with their ill child. When a child is hospitalized, it can be a traumatic experience for the entire family. Adaptation to the new situation and new parental responsibilities is necessary. Hospitalized children demand more supervision and care, making sleep disturbance a common challenge among these parents. A qualitative exploratory interview study was conducted using semi-structured individual or couple interviews with 17 parents (12 mothers and five fathers) admitted together with their ill child for shorter or longer periods at pediatric wards at a university hospital in Sweden. Interviews were analyzed with content analysis. Sufficient amount of sleep and rest was described as vital for parental functioning. The main theme Factors influencing sleep and rest emerged with three subthemes. Environmental factors describe experiences such as disturbing sounds and uncomfortable beds. Interpersonal factors describe how supportive relations with spouses, relatives, nurses, and doctors were experienced as strengthening the parental confidence and helping parents to relax. Parents wanted to participate in the care but appreciated help from the nurses when they needed rest or support. The last subtheme, Organizational factors, describe how continuous information about the child’s care and prognosis was experienced as the most important factor to feel secure and calm. Parents expressed that a possibility to buy lunch and dinner at the ward would greatly relieve parents’ stress and help them rest. Parents in this study were grateful that they were allowed to stay by their child’s side, but pointed out improvement opportunities. Single rooms with comfortable beds for the parents were in high demand to promote relaxation and sleep. Continuous, adjusted, information was seen as important. All hospitalized children have the right to partake in their own treatment and care, and they need a parent at their side. By optimizing parents’ sleep and rest in the hospital, a more positive experience of the hospitalization can be achieved for the entire family.
Introduction
The hospitalization of a child, regardless of the illness, can be a traumatic experience for the entire family. Adaptation to the new situation and to new parental responsibilities is necessary (Stremler, Dhukai, Wong, & Parshuram, 2011). Generally, an ill child demands more supervision and care, making sleep disturbance a common challenge among parents of ill children (Stickland, Clayton, Sankey, & Hill, 2016). Today, there is a knowledge gap about parents’ experience of sleep and rest when admitted to hospital together with their ill child. By interviewing parents in this peculiar situation in life, this qualitative study can contribute with knowledge regarding their sleep and rest, as well as which factors they experience as being beneficial and non-beneficial during their hospital stay.
Background
Sleep is essential for health and well-being. It has an impact on physiological functions (Bryant, Trinder, & Curtis, 2004) as well as cognitive function, memory, and emotional regulation (Beebe, 2011; Gobin, Banks, Fins, & Tartar, 2015). Studies have shown that long-term sleep deprivation can lead to depressive symptoms (Buysse et al., 2008) and long-term physiological effects including hypertension, obesity, type-2 diabetes, and stroke (Harding & Feldman, 2008).
The Swedish law and the UN Convention on the Rights of the Child define a child as a human being under the age of 18. In this study, the word “parent” is used about the person/adult that has legal authority as the caretaker of the child.
Hospitalization has positive as well as negative aspects. Studies have shown that parents experience poor sleep quality and frequent awakenings during their hospital stay (Franck et al., 2014; McCann, 2008; Meltzer, Davis, & Mindell, 2012), which in turn can result in poor decision-making and bad coping with the child’s illness (Stickland et al., 2016). Parents experienced better sleep in a room at a so-called “Ronald McDonald-house” (RMH) compared with sleeping at their child’s bedside in the hospital (Franck et al., 2014). RMH is the largest international nonprofit family accommodation program (Franck, Gay, & Rubin, 2013). In Sweden, five RMHs provide nearby accommodations and support services to family members of children receiving healthcare services. Based on the distance between hospital and home as well as on the child’s severity of illness and/or diagnosis, eligible families are offered RMH accommodation (Stremler, Wong, & Parshuram, 2008).
Parental involvement in pediatric hospital care is expected and encouraged by hospital staff (Power & Franck, 2008). Presence of a family member during treatment can significantly reduce both the child’s and the parents’ anxiety (American Academy of Pediatrics, 2012; Smith, Hefley, & Anand, 2007). Staying together can also help the parents to understand the disease and prepare them for post discharge care. However, it can be difficult for parents to know whether they are co-hospitalized primarily to take care of the practical matters such as giving medication, or if they should focus on giving comfort and support. Thus, insecurity in expectations of parental involvement can play a role on parents sleep.
Family centered care (FCC) is a healthcare model encouraging collaboration and partnership between families and caregivers when making healthcare decisions (Coyne, Hallstrom, & Soderback, 2016). The entire family becomes the unit of care, meaning that caregivers focus not only on the admitted child. Even though FCC is considered a standard and ruling model in pediatric healthcare, there is not much research on the effectiveness and impact of FCC for children and families (Shields et al., 2012). Even though FCC mentions involvement of children, it has been observed that more emphasis is given to the family as a whole than to the child. Another model is child centered care (CCC) involving the child in its care with respect to its age and developmental stage (Coyne et al., 2016). An older child has the capacity for making his or her own decisions and has the right to privacy. Besides being given the proper treatment and care, a child’s recovery is dependent on its parents when hospitalized.
All children who are hospitalized in Sweden have at least one parent staying overnight, making the number of affected parents significant. More studies that examine the impact of pediatric hospitalization on parents’ sleep are needed. The aim of this study was to explore parents’ experiences of sleep and rest while admitted to hospital together with their ill child.
Materials and method
Design
A qualitative exploratory study was adopted, suitable for investigating participants’ experiences. Individual or couples’ interviews were performed with parents while their child was hospitalized. The interviews were analyzed with content analysis (Graneheim & Lundman, 2004).
Settings and participants
This study was conducted at pediatric wards in a hospital in Southern Sweden. Out of a total of 10 unit chiefs, eight approved the study. Inclusion criteria were Swedish-speaking parents who had stayed at least one night at hospital with their ill child. All parents who fit the inclusion criteria received short written information about the study from a nurse. Those expressing an interest to participate were provided with additional information from WN, and an interview was booked.
Parents of children admitted to departments of pediatric infection, cardiology, intensive care, neonatal care, endocrinology, and general care participated in the study. Their children, whose ages varied from 1 month to 15 years, had stayed at the hospital from one night to 3 months, and there was a wide variety in diagnoses and treatments. Parents and children older than 1 year slept together in single rooms at the ward. Four parents with critically ill children slept in a room at the hospitals’ onsite RMH while their premature infants were treated with full surveillance in rooms with 2–4 infants at the intensive care unit.
Data collection
The semi-structured interviews were conducted individually or with both parents together by WN in the patients’ room or in a nearby consultation-room. After receiving oral and written information, opportunity was given to ask questions and an informed consent was signed. For examples of questions, see Table 1. Interviews were audio-recorded and transcribed verbatim.
Table 1. Examples from the semi-structured interview guide.
Data analysis
The interviews were analyzed with latent content analysis (Graneheim & Lundman, 2004). First, both authors read all the interviews several times to gain an overall understanding of the content. The text was divided into meaning units, which were condensed without losing their core meaning. Thereafter, the condensed meaning units were labeled by forming codes that finally were grouped into subthemes and a theme. The researchers worked with the text back-and-forth in a dynamic process throughout the study discussing codes, subthemes, and themes until an agreement was reached. Quotes are shown to illuminate parents’ experiences, marked with “M” for mother, “F” for father.
Ethical considerations
The parents were informed that participation was voluntary, could be discontinued at any time, would not have an effect on their child’s healthcare, and that the caregivers would not be informed about their answers. Personal information was coded to guarantee confidentiality. Approval to conduct the study was obtained from the Regional Ethical Review Board (Dnr 2017/701).
Results
Nine individual interviews and four couples’ interviews were performed, making a total number of 13 semi-structured interviews, 23–46 minutes long. Totally, 12 mothers and five fathers attended. Sufficient amount of sleep was described as vital for parental functioning. As the parents’ priority was their child’s best interest, they focused on the child and put their own needs aside. Other relationships could suffer and parents who had stayed at the hospital for a long time described a feeling of unhappiness and isolation from the world outside the hospital. Poor sleep made the parents more irritable with one another and understanding information and making healthcare decisions was described as difficult when tired. When sleep was lacking, it was difficult to keep up a positive attitude and bright thoughts about the future, making the stay at the hospital more difficult to manage. A main theme, Factors influencing sleep and rest and three subthemes Environmental factors, Interpersonal factors and Organizational factors emerged from the analysis, presented below.
Environmental factors
Being admitted to the hospital meant dealing with several new impressions. Parents reported sounds from hospital machines and noises of nurses during the nights as factors that could interfere with their sleep. Parents who had been in the ward for a long time were more disturbed by this. For parents who had a short stay, this was seen as a temporary inconvenience and knowing that you soon would be discharged made the sounds easier to cope with. Four parents slept at the nearby RMH, describing the absence of disturbing sounds from the machines as positive. Merely the sight of hospital machines connected to their premature babies induced stress and anxiety in the parents. By sleeping at RMH, they could escape the sight and sounds of those machines for a while and rest. A negative aspect of sleeping at RMH was not being near your child. Parents described this as frustrating in the beginning but something they quickly got accustomed to, since the ward was within walking distance. Parents described that sleeping at RMH allowed them to sleep more and they felt happier.
Thoughts about if he is really breathing appear only when you see your child connected to a machine. (F1)
One shared opinion was the importance of single-patient rooms, allowing privacy. Not having to adjust to other people’s routines and needs made parents feel more relaxed. Parents explained that they felt less stress during nights when they did not have to sleep with strangers, and, therefore, had better sleep.
The other dad slept without any clothes on!/eyes wide open/ (M2)
Parents described that being close to other families could trigger more anxiety and stress. Their own child or the child next to them could be in bad condition, thus crying more during the nights, awakening everyone in the room. Parents wanted a single-room for their own and their child’s sake, but also for the other families’ sake.
Oh God, yes, it would have been hard/to share room/. The worry about waking them up, disturbing them, knowing how to behave correctly. (M3)
Even though all the parents wanted separate rooms, some of them mentioned positive aspects with shared rooms, such as sharing the same experience and giving one another advice. One mother, who initially had her child in a multi-bedroom in the neonatal ward, described the advantage of seeing other premature babies getting better:
They became healthier, bigger and stronger! Then they were moved either home or to this/single/room. You saw the others progress and you thought One happy day we will also be able to go home. (M5)
Nurse’s controls and routines during nighttime could awaken the parents. However, this was described as something rare. Parents felt that nurses worked as quietly as possible and with respect to not awaken the family. The majority of the informants described nothing but gratitude and trust towards the nurses for doing a great job.
Parents experienced the vinyl-coated sofas where they were referred to sleep at night as uncomfortable, old, slippery, and sloping. For parents who had stayed at the hospital for a longer period or themselves had neck or back injuries, the uncomfortable bed became more annoying with time. Some parents with small children solved this problem by co-sleeping with their child in its bed. One mother slept on a yoga-mat because she found sleeping on the floor more comfortable than on the sofa.
The experienced trust and security towards the healthcare workers made it easier for the parents to relax. As an example, they felt safe when they experienced that the hygiene standards were high. Parents at the ward for pediatric infections expressed how they appreciated the rooms having back-doors, allowing the family to exit and enter without increasing the risk of infections.
Parents described the temperature at the hospital as cold. Those who stayed longer at the hospital brought extra socks and warm sweaters to help them relax and sleep. Getting an extra-blanket from the staff was appreciated.
Interpersonal factors
Parents dealt with a jumble of emotions. For some parents, the factor that affected them the most was not having an ill child but becoming a first-time parent. These parents experienced happiness of becoming a parent and at the same time sorrow for having a critically ill child. They described that they did not feel as “real” parents, since much of the child’s care was performed by nurses and assistant nurses.
…sometimes we wake up and proudly think “wow, we are parents!” But/our baby/is here/at the neonatal intensive care unit/. Even though we are allowed to visit whenever we want we need permission to come and say hi. (F4, staying at RMH)
By being united as a family, parents felt stronger during their time of admittance. Spouses, relatives, and siblings served as a support system that could help the parents as well as the ill child both practically and emotionally. Those having relatives that could share caring for the child described a relief as they were allowed to catch up with their sleep. Since hospital wards only allow one parent during nighttime, the family members got separated which was described as difficult. One father described that he never really felt present in his child’s life as he had to leave his wife and child every night, making him feel more like a visitor and less like a husband and father.
Parents who had been in the hospital for several weeks described a sense of security in knowing almost all healthcare workers, making them feel at home. Parents described a constant concern of having an ill child, a matter they never got accustomed to. In spite of this, they all described the importance of living their life as “normally” as possible including taking walks or meeting friends, activities that reminded them that life had other meanings despite the child’s disease. Connecting with their normal life helped them to relax. All the informants commented that acquiring food was difficult as only breakfast was included for the parents. Those having relatives and spouses bringing food so they could eat together, described that being gathered as a family created a more home-like environment, which enabled the family functioning. In contrast, a single-mother who had been in the hospital for 3 months experienced acquiring food as extremely difficult. In her case, her child was in such bad condition that she was not able to leave him alone at the ward and she had no nearby relatives or friends that could bring her food. This meant that some days went by without her eating anything but breakfast. Hunger and worry about food was described as a hindrance for rest.
Parents appreciated talking with fellow parents in the hospital. They experienced understanding each other’s situation to the fullest. By being in the “same boat”, parents meant that their support and recommendations were invaluable.
It doesn’t matter if a doctor or midwife has worked here for 30 years… They haven’t experienced this as a parent. (F4)
Parents wanted to be involved in the treatment and care of their child. An open atmosphere where parents felt part of their child’s care and recovery also played an important role for their own comfort. Furthermore, it was important for them that the child did not feel abandoned or scared during the time of admittance. Protecting the child from this, and relieving the pain from necessary procedures caused by nurses or doctors was seen as an obligation. This was sensitively described by parents of infants and toddlers who could not protect themselves like the adolescent patients could.
To be awakened by people who do things with your body that you don’t want to! And its dark and you are a child so you don’t understand what’s happening… (M2)
The level of participation varied among the parents. By being a part of their child’s treatment and care they felt an increased amount of control and ease. Some parents could not sleep unless they were involved in every step, while others put their full trust with the nurses at the ward and slept throughout the night without difficulties.
It would have been hard if we weren’t allowed to/participate/. It would have felt just as we weren’t allowed to be the parent of our own child. (M4)
By being included in the child’s care, parents meant that they learned about the child’s disease and treatment, making them more confident and prepared for coming home. Parents described that no clear demands were stated so their own chores were formed together with the nurses. However, parents did not experience their participation and responsibilities as overwhelming, since the nurses at the ward ensured that the parents were comfortable with the level of participation. Parents who themselves had a medical profession experienced the hospital environment as familiar. One mother described how she could, e.g. connect and disconnect the IV-fluids to her child since this was a normal routine in her profession as a nurse.
Parents wanted to be perceived as calm and cooperative and described a fear of being disliked by the hospital staff and what consequences that could have on their child’s care and treatment. The parents explained that they felt less anxious when a mutual trust had been built between them and healthcare providers. Trusting the knowledge of the doctors and nurses made parents feel secure about their child’s treatment, enabling them to relax and sleep better. The parents experienced that the nurses and doctors played a major role not only in their child’s care but also in the situation of the parents at the ward, giving them a possibility to relax, rest, and sleep at times. Relationships with nurses were in general described as very positive as they lessened the parental burden by providing practical support with the treatment of their child and decreased emotional stress by continuous information. Being guided by experienced nurses towards their new parental role was described as invaluable, especially by first-time parents. Even though the main focus of the nurses was experienced as treating the ill child, parents felt that nurses also had an eye on them, showing empathy and a will to ease their situation as well. Nurses could offer help with taking over the feeding during the nights or taking care of the child for a while during the day so the parent could eat or take a walk. When healthcare providers showed empathy and offered more help if needed, the burden became lighter for the parents and they could relax and sleep.
You don’t really know where to set your limits… They/the nurses/notice when you ignore your own eating and sleep… (M8)
Some did not ask for help. Beside sleep and food, other basic needs were described as impossible to satisfy if the parent could not leave the child and if no relative or healthcare provider offered time of privacy, causing stress, and restlessness.
I can tell you this, I never poop when I’m here. I can keep it in for several weeks… (M2)
Organizational factors
Not being offered lunch or dinner at the hospital was experienced as negative and stressful. Parents would gladly have paid for lunch and dinner in the hospital. They could not buy food nearby, which was seen as an additional stress factor in their situation.
The food-situation is incredibly uncomfortable. We will get scurvy out of living here… (M7)
Parents mentioned aspects that could develop stress and frustration even before time of admittance. Two parents had waited 10 months for their child’s operations, despite being scheduled for acute operations. They stated that they had received no reason for the delay creating frustration, insecurity, and less trust in the healthcare system. When the child finally had been admitted to the hospital, they had been pleasantly surprised by the information provided about the care, which made them feel secure. Other information failures causing confusion and stress were unclear rules about visiting hours for relatives, financial help with travels to and from the hospital and when to apply for leave from work. Parents worried about a financial strain in the long run.
Hospital environment was experienced by the parents as stressful not only for themselves but also for the hard working nurses and doctors who according to the parents did not receive the appreciation they deserved from the management. Parents experienced the shortage of healthcare providers at the ward as a possible risk for patient safety.
The biggest problem with hospitals today, and perhaps the part that disturbs my sleep the most, is the healthcare staff… That there is too little staff. (M6)
Discussion
The parents in this study wanted to be awake and participate closely in the care of their child. Although they prioritized the child´s best interests, they highlighted the importance of their own sleep and rest and pointed out improvement opportunities. Frequent nightly awakenings and poor sleep quality during the hospital stay affects and limits parents’ resources to meet the child’s needs (Angelhoff, Edell-Gustafsson, & Morelius, 2015; Stickland et al., 2016) (Meltzer & Moore, 2008). It is of importance to emphasize parents’ sleep during hospital stay since it will affect and play a role in their attitude, coping ability and parental skills.
A new law about children’s right in healthcare was issued in Sweden 2015, stating that when the patient is a child, his/her stance has to be clarified as far as possible and taken in consideration when care and treatment is given (The Swedish Patient-law, 2015). Thus, having a parent close by is of great importance for the child since parents can be the messengers between the child and healthcare providers. This matter becomes especially important for children who cannot express their opinions. Sleep is essential for parents to get the strength to safeguard their child and serve as the child’s ambassador (Hagvall, Ehnfors, & Anderzen-Carlsson, 2016). Unlike many other countries, accommodation in single-patient rooms is becoming the standard in most pediatric wards in Sweden (Angelhoff, Edell-Gustafsson, & Morelius, 2018). Earlier studies have shown that patients and families tend to be more satisfied with single rooms and in the present study, one obvious factor to promote sleep was having single-patient rooms, assuring the privacy of the parents, promoting relaxation and good sleep as they did not need to adjust to routines and habits of other families. This finding is in-line with a study (Meltzer et al., 2012) reporting several disturbing factors when ill children share rooms, such as disturbing noises, interruptions from other patients and other parents’ concern about their child’s diagnosis. Single rooms have also showed advantages such as infection control (Walsh, McCullough, & White, 2006), as well as increased privacy and accessibility for patients and families (White, 2003), bringing benefits for both ill children and their parents.
The parents in our study were grateful when they were allowed to stay by their child’s side and participate in the care. On the other hand, parents who slept at RMH described the feeling of not being a “real” parent since nurses at the ward did most of the chores around the child. Nevertheless, they experienced advantages with RMH, such as escaping hospital noise and the sight of hospital machines. This is in-line with a previous study (Franck et al., 2014) showing that parents who slept bedside at the hospital had more sleep disruption during the nights and felt less rested in the mornings compared with parents who slept at RMH.
Environmental and organizational factors were described to interfere with sleep, and some factors that parents in the present study described as hindering sleep and rest could be changed. Hospital beds were highly criticized in our study, in-line with Franck et al’s study (Franck et al., 2014) where more than half of the parents reported that an uncomfortable bed disrupted their sleep. Providing rooming-in parents with comfortable beds could significantly enhance their sleep. While waiting for the uncomfortable easy-to-clean vinyl sofas to be replaced by more comfortable beds, providing extra pillows and blankets may enhance parental rest and sleep. Allowing parents to buy lunch and dinner at the ward is another factor that could significantly relieve parents’ stress and help them rest.
Parents in the present study wished to receive continuous information adjusted to their level of understanding about their child’s condition, treatment, and prognosis. Feeling secure and being more included in the child’s healthcare improved parental confidence, promoting the sleep and rest of the parents. Similar results were shown in a study where access to patient information became a coping strategy in the new stressful hospital environment (Hopia, Tomlinson, Paavilainen, & Astedt-Kurki, 2005). However, tailoring the information to the family’s individual situation was described as important since not all families are susceptible, some may even reject the information. From the healthcare’s point of view, it is important to adapt the information to the needs of different families, finding alternative ways to give information. By communicating with the family about their preferences for provided information, a good balance can be found.
As their first priority was staying by their child’s side, parents in the present study often set their own needs aside. Nurses were an important support, decreasing the parental burden by providing practical support, such as taking over the chores of the parents during the night. This relief during nights made it possible for the parents to get more sleep. However, some parents did not ask for support to resolve even their most basic needs which should remind nurses to make sure that parents have understood that nurses are willing and able to look after their child for a while. An earlier study described that the care period from the parents perspective as a balancing act between being a caregiver and being in need of care (Hagvall et al., 2016). Another study found that parents of premature babies highly valued medical and emotional support from healthcare providers (Edell-Gustafsson, Angelhoff, Johnsson, Karlsson, & Morelius, 2015). The help from skilled staff taking medical responsibility was appreciated although parents experienced mixed feelings when being separated from their child, a situation also described in our result.
In the present study, parents wanted to participate in their child’s treatment also at night. Parents felt a good balance in the involvement of the healthcare providers, since nurses at the ward made sure parents were comfortable with their participation. In contrary to our findings, an earlier study reported that parents wanted to be more involved in the care of their child but they had not received any suggestions for participation (Romaniuk, O’Mara, & Akhtar-Danesh, 2014). In our study, parental involvement empowered, secured, and eased the situation for the parents. Parents felt that they had regained a feeling of control, becoming an important part of their child’s recovery. These results clarify the importance of dialogue between parents and healthcare providers as this leads to better understanding and less confusion in expectations.
Removing organizational aspects already creating frustration before the admission could reduce stress, lessen the parental burden, and develop trust towards the healthcare system. When a child is ill, the prime goal is to restore its health, but when a child is ill or hospitalized, it can be a traumatic experience for the entire family. Helping parents to rest and sleep may be beneficial not only for them but also for the ill child. The healthcare system and healthcare providers have an important role in optimizing rest and sleep for children and their families. Taking the suggestions from the parents in our study in account could lead to improvements in the healthcare service and a better situation for the affected families.
Strengths and limitations
The interviews provided rich information from mothers and fathers of children with varying diagnoses and prognoses. Some parents had only spent a couple of days at the ward for a mild infection, whereas others had been in the ward for months because their child had a critical diagnosis and needed breathing assistance. This allows a broad understanding of how sleeping at a hospital with an ill child can be experienced. However, results from qualitative studies are not intended to be generalized for a whole population.
Researcher bias was counteracted by two researchers analyzing the interviews and discussing the results until an agreement was reached and by the fact that none of the authors worked at the pediatric department.
Conclusion
This study adds knowledge about parents’ experiences of being admitted to a hospital with their ill child. The results can be used in future clinical guidelines for interventions to promote parents’ sleep, rest, and participation in the care, thereby optimizing their parenthood. Even though parents in this study were mostly positive about their sleep at the hospital, they pointed out improvement opportunities. When comparing our results with earlier research, we conclude that single rooms with comfortable beds for the parents are highly recommended to promote parental rest and sleep.
Relevance to clinical practice
In any context, it is vital to involve parents in the care of their child while offering a fill-in when needed. As relationships with relatives and staff were described as crucial by parents admitted to hospital with their ill child, helping parents to establish and maintain supporting relations is important during this stressful time. The importance of continuous information to reduce parental stress and frustration cannot be over-emphasized. In Sweden, all hospitalized children have the right to partake in their own treatment and care, and they need a parent by their side. By promoting parental sleep in the hospital, parenthood is optimized and better health can be achieved for the entire family. This is of utmost importance since pediatric patients are fragile and need the fullest support of their parents.
| Examples of questions | Examples of probing questions |
|---|---|
| Would you please share your experience of sleeping at the hospital with your ill child? | Could you explain that further? Who shares room and bed? Do other families sleep in the same room? |
| Can you mention factors that influence your sleep and rest at the hospital? | … in a positive way? …in a negative way? |
| How much do you partake in the care of your child at nighttime? | How much do you want to partake? |
| Do you find that good sleep affects your parenthood? | Do you find that a lack of sleep affects your parenthood? |
| Do you find the staff trying to facilitate the sleep and rest of parents? | Do you have any recommendations for staff to better facilitate the sleep of parents? |
Acknowledgements
The authors would like to acknowledge the parents who shared their experiences and thoughts.
Disclosure Statement
The authors report no conflict of interest.
References
- American Academy of Pediatrics. Committee On Hospital Care and Institute For Patient- and Family-centered Care. (2012). Policy statement. Patient- and family-centered care and the pediatrician’s role. Pediatrics, 129(2), 394–404. doi:10.1542/peds.2011-3084 [Crossref], [Web of Science ®], [Google Scholar]
- Angelhoff, C., Edell-Gustafsson, U., & Morelius, E. (2015). Sleep of parents living with a child receiving hospital-based home care: A phenomenographical study. Nursing Research, 64(5), 372–380. doi:10.1097/NNR.0000000000000108 [Crossref], [Web of Science ®], [Google Scholar]
- Angelhoff, C., Edell-Gustafsson, U., & Morelius, E. (2018). Sleep quality and mood in mothers and fathers accommodated in the family-centred paediatric ward. Journal of Clinical Nursing, 27(3–4), e544–e550. doi:10.1111/jocn.14092 [Crossref], [Web of Science ®], [Google Scholar]
- Beebe, D. W. (2011). Cognitive, behavioral, and functional consequences of inadequate sleep in children and adolescents. Pediatric Clinics of North America, 58(3), 649–665. doi:10.1016/j.pcl.2011.03.002 [Crossref], [Web of Science ®], [Google Scholar]
- Bryant, P. A., Trinder, J., & Curtis, N. (2004). Sick and tired: Does sleep have a vital role in the immune system? Nature Reviews. Immunology, 4(6), 457–467. doi:10.1038/nri1369 [Crossref], [Web of Science ®], [Google Scholar]
- Buysse, D. J., Angst, J., Gamma, A., Ajdacic, V., Eich, D., & Rossler, W. (2008). Prevalence, course, and comorbidity of insomnia and depression in young adults. Sleep, 31(4), 473–480. [Crossref], [Web of Science ®], [Google Scholar]
- Coyne, I., Hallstrom, I., & Soderback, M. (2016). Reframing the focus from a family-centred to a child-centred care approach for children’s healthcare. Journal of Child Health Care : For Professionals Working with Children in the Hospital and Community. doi:10.1177/1367493516642744 [Crossref], [Web of Science ®], [Google Scholar]
- Edell-Gustafsson, U., Angelhoff, C., Johnsson, E., Karlsson, J., & Morelius, E. (2015). Hindering and buffering factors for parental sleep in neonatal care. A phenomenographic study. Journal of Clinical Nursing, 24(5–6), 717–727. doi:10.1111/jocn.12654 [Crossref], [Web of Science ®], [Google Scholar]
- Franck, L., Wray, J., Gay, C., Dearmun, A. K., Alsberge, I., & Lee, K. A. (2014). Where do parents sleep best when children are hospitalized? A pilot comparison study. Behavioral Sleep Medicine, 12(4), 307–316. doi:10.1080/15402002.2013.801347 [Taylor & Francis Online], [Web of Science ®], [Google Scholar]
- Franck, L. S., Gay, C. L., & Rubin, N. (2013). Accommodating families during a child’s hospital stay: Implications for family experience and perceptions of outcomes. Families, Systems & Health : The Journal of Collaborative Family Healthcare, 31(3), 294–306. doi:10.1037/a0033556 [Crossref], [Web of Science ®], [Google Scholar]
- Gobin, C. M., Banks, J. B., Fins, A. I., & Tartar, J. L. (2015). Poor sleep quality is associated with a negative cognitive bias and decreased sustained attention. Journal of Sleep Research, 24(5), 535–542. doi:10.1111/jsr.12302 [Crossref], [Web of Science ®], [Google Scholar]
- Graneheim, U. H., & Lundman, B. (2004). Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness. Nurse Education Today, 24(2), 105–112. doi:10.1016/j.nedt.2003.10.001 [Crossref], [Web of Science ®], [Google Scholar]
- Hagvall, M., Ehnfors, M., & Anderzen-Carlsson, A. (2016). Experiences of parenting a child with medical complexity in need of acute hospital care. Journal of Child Health Care : For Professionals Working with Children in the Hospital and Community, 20(1), 68–76. doi:10.1177/1367493514551308 [Crossref], [Web of Science ®], [Google Scholar]
- Harding, K., & Feldman, M. (2008). Sleep disorders and sleep deprivation: An unmet public health problem. Journal of the American Academy of Child & Adolescent Psychiatry, 47(4), 473–474. 10.1097/01.CHI.0000270812.55636.3b [Crossref], [Web of Science ®], [Google Scholar]
- Hopia, H., Tomlinson, P. S., Paavilainen, E., & Astedt-Kurki, P. (2005). Child in hospital: Family experiences and expectations of how nurses can promote family health. Journal of Clinical Nursing, 14(2), 212–222. doi:10.1111/j.1365-2702.2004.01041.x [Crossref], [Web of Science ®], [Google Scholar]
- McCann, D. (2008). Sleep deprivation is an additional stress for parents staying in hospital. Journal for Specialists in Pediatric Nursing : JSPN, 13(2), 111–122. doi:10.1111/j.1744-6155.2008.00142.x [Crossref], [Web of Science ®], [Google Scholar]
- Meltzer, L. J., Davis, K. F., & Mindell, J. A. (2012). Patient and parent sleep in a children’s hospital. Pediatric Nursing, 38(2), 64–71. quiz 72 [Google Scholar]
- Meltzer, L. J., & Moore, M. (2008). Sleep disruptions in parents of children and adolescents with chronic illnesses: Prevalence, causes, and consequences. Journal of Pediatric Psychology, 33(3), 279–291. doi:10.1093/jpepsy/jsm118 [Crossref], [Web of Science ®], [Google Scholar]
- Power, N., & Franck, L. (2008). Parent participation in the care of hospitalized children: A systematic review. Journal of Advanced Nursing, 62(6), 622–641. doi:10.1111/j.1365-2648.2008.04643.x [Crossref], [Web of Science ®], [Google Scholar]
- Romaniuk, D., O’Mara, L., & Akhtar-Danesh, N. (2014). Are parents doing what they want to do? Congruency between parents’ actual and desired participation in the care of their hospitalized child. Issues in Comprehensive Pediatric Nursing, 37(2), 103–121. doi:10.3109/01460862.2014.880532 [Taylor & Francis Online], [Google Scholar]
- SFS 2014:821. (2015). Hälso- och sjukvården. The Swedish Patient-law. Stockholm: Riksdagen. [Google Scholar]
- Shields, L., Zhou, H., Taylor, M., Hunter, J., Munns, A., & Watts, R. (2012). Family-centred care for hospitalised children aged 0-12 years: A systematic review of quasi-experimental studies. JBI Libr Systems Reviews, 10(39), 2559–2592. doi:10.11124/jbisrir-2012-32 [Crossref], [Google Scholar]
- Smith, A. B., Hefley, G. C., & Anand, K. J. (2007). Parent bed spaces in the PICU: Effect on parental stress. Pediatric Nursing, 33(3), 215–221. [Google Scholar]
- Stickland, A., Clayton, E., Sankey, R., & Hill, C. M. (2016). A qualitative study of sleep quality in children and their resident parents when in hospital. Archives of Disease in Childhood, 101(6), 546–551. doi:10.1136/archdischild-2015-309458 [Crossref], [Web of Science ®], [Google Scholar]
- Stremler, R., Dhukai, Z., Wong, L., & Parshuram, C. (2011). Factors influencing sleep for parents of critically ill hospitalised children: A qualitative analysis. Intensive & Critical Care Nursing : The Official Journal of the British Association of Critical Care Nurses, 27(1), 37–45. doi:10.1016/j.iccn.2010.11.001 [Crossref], [Google Scholar]
- Stremler, R., Wong, L., & Parshuram, C. (2008). Practices and provisions for parents sleeping overnight with a hospitalized child. Journal of Pediatric Psychology, 33(3), 292–297. doi:10.1093/jpepsy/jsm096 [Crossref], [Web of Science ®], [Google Scholar]
- Walsh, W. F., McCullough, K. L., & White, R. D. (2006). Room for improvement: Nurses’ perceptions of providing care in a single room newborn intensive care setting. Advances in Neonatal Care : Official Journal of the National Association of Neonatal Nurses, 6(5), 261–270. doi:10.1016/j.adnc.2006.06.002 [Crossref], [Google Scholar]
- White, R. D. (2003). Individual rooms in the NICU – an evolving concept. Journal of Perinatology : Official Journal of the California Perinatal Association, 23(Suppl 1), S22–24. doi:10.1038/sj.jp.7210840 [Crossref], [Google Scholar]