Paediatric post-discharge pain and parent perceptions of support from an Australian nurse practitioner led acute pain service

Abstract

Poorly managed post-operative pain remains an issue for paediatric patients. Post-discharge telephone follow-up is used by an Australian Nurse Practitioner Acute Pain Service (NpAPS) to provide access to effective pain management post-discharge from hospital. This cross-sectional survey design study aimed to determine the pain levels of children following discharge and parent views on participation in their child’s pain management and perceptions of support from the NpAPS. Parents completed the Parents’ Postoperative Pain Measure–Short Form (PPPM-SF) and factors affecting parents’ participation in children’s pain management questionnaire (FPMQ). Results indicated that pain score was high, especially on the day of discharge and 24 hours post-discharge. Parents, despite feeling supported by the NpAPS, experienced uncertainty, emotional responses and expressed concerns about communication and coordination of care. The clinically significant pain levels of the majority of children on the day of discharge and day post-discharge from hospital are a concern. Worry and uncertainty among parents, particularly on the day and first night of discharge, suggest this transition period where responsibility of clinical management of pain is handed over to parents may require greater focus for parental support.

Keywords

Pain paediatrics nurse practitioners after care paediatric nursing

Introduction

Each year, millions of children (Pölkki et al., 2002; Von Baeyer et al., 2011) throughout the world undergo surgery, and despite the availability of guidelines and effective pain relief practices, many still experience moderate to severe unrelieved post-operative pain (Smeland et al., 2018; Twycross and Finley, 2013; Twycross et al., 2015b). The literature points to paediatric pain management being a global issue with immediate and long-term consequences for paediatric patients (Twycross et al., 2015a). Unrelieved pain can have physical consequences such as negative systemic effects on multiple body systems and physiological functioning including elevated stress hormones, risk for pulmonary and cardiovascular complications, immunosuppression, delayed wound healing, impaired mobility and risk for infection (Ismail, 2016). Psychological consequences of unrelieved pain may include fear, anxiety and the development of post-traumatic stress disorder (Hovde et al., 2012; Williams et al., 2015).

Following discharge from hospital, children’s recovery can also be complicated by poorly controlled pain and disrupted sleep, and this can impede their return to normal activities, impact multiple body systems and delay their recovery (Rabbitts et al., 2015). There is also a link between the development of chronic postsurgical pain (pain persisting after 3 months) and the severity of acute post-operative/postsurgical pain. This highlights the need to manage post-operative pain effectively to prevent the development of chronic pain (Batoz et al., 2016). If children develop chronic postsurgical pain, the impact on their daily activities can lead to social isolation and school absenteeism and can have negative effects on academic and athletic performance (Fortier et al., 2011).

Unrelieved pain can also contribute to an increase in organisational costs. These costs may include prolonging length of stay, and following discharge, may result in re-presentation to emergency departments or readmission (Auger et al., 2014). The consistent theme emerging from the literature is the impact inadequate pain management has on social, emotional and physical aspects of function beyond immediate discharge. The challenge remains to employ an effective model of care which provides access to high-quality pain management for paediatric patients and their families following discharge.

Parents are responsible for the child’s pain management following discharge, and yet they may expect their child should experience pain following surgery or be reluctant to administer analgesics due to fears about side effects and addiction (Dagg et al., 2019; Twycross and Finley, 2013). Parents report they would like more involvement and information regarding their child’s pain management (Pölkki et al., 2002; Twycross and Collis, 2013; Lim et al., 2012). Expert support, information and guidance can empower parents to manage their child’s post-operative pain effectively (Chng et al., 2015; Dagg et al., 2019; Lim et al., 2012).

Post-discharge phone consultation is one method to provide assistance in a cost-effective, personable manner and mitigate risks for untreated pain. Paquette et al. (2013) conducted a randomised control trial (RCT) of telephone follow-up in patients post tonsillectomy surgery, finding a relationship between nurse follow-up and decreased pain scores alongside reduced presentations to emergency departments for pain management. Similarly, Vincent et al. (2012), in a quasi-experimental study (n = 108), measured similar outcomes to Paquette et al. (2013). Common themes emerged in these studies regarding parents’ reluctance to use analgesics due to knowledge deficits. This highlights the necessity for effective education of parents and patients during telephone follow-up. Vincent et al. (2012) found that telephone follow-up correlated with an increase in analgesic administration by parents.

The study context was a large tertiary paediatric hospital in Queensland, Australia, where an acute pain service is provided to paediatric inpatients and outpatients upon referral. The acute pain service is located within the department of anaesthetics which comprises a team of Paediatric Anaesthetists, Clinical Nurse Consultants, two Nurse Practitioners and a Clinical Nurse. Ethical approval for the study was obtained from both University and Hospital Ethics committees (GU Ref No.: 2017/564 and HREC/16/QRCH/309). This article reports on the results of the cross-sectional survey.

Aims

The research study aimed to determine

the pain levels of children following discharge from hospital,

parent views on participation in their child’s pain management and

parent perceptions of support from the NpAPS.

Study design and methods

The cross-sectional survey design enabled a snapshot of parent experiences of managing their child’s pain and parent reports of their child’s pain following discharge from hospital.

Inclusion criteria

All parents whose child was referred to the NpAPS during the 12-month data collection period were invited to take part in the study. To be eligible for referral to the NpAPS, paediatric patients (from birth to 18 years) need to be on oral analgesics only, and all other types of pain management need to have been discontinued.

Data collection instruments

Parents’ postoperative pain measure–short form(PPPM-SF)

The PPPM-SF is an observational, parent report, checklist designed to measure the pain intensity a parent perceives a child to be experiencing (Von Baeyer et al., 2011). The PPPM-SF asks participants to answer ‘Yes/No’ to 10 statements like ‘When your child was recovering from survey did they groan or moan more than usual?’ Score range is from 0 to 10, and the total score is calculated according to the number of items answered with a ‘yes’ response. A zero score indicates ‘no pain’; 1–3, ‘mild pain’; 4–7, ‘moderate pain’ and 8–10, ‘severe pain’ (Von Baeyer et al., 2011). A clinically significant pain score is considered to be a score greater than 3 (Von Baeyer et al., 2011). The PPPM-SF is a modified version of the PPPM (Chambers et al., 1996) and has shown strong reliability and validity (α =.85) (Von Baeyer et al., 2011). The internal consistency of the PPPM-SF in this sample was good (α = .73–.82) across the discharge from hospital, day after discharge and follow-up time points, but showed poor internal consistency at the day after medication was reduced time point (α = .27).

Factors affecting parents’ participation in children’s pain management questionnaire

A questionnaire that examined factors affecting parents’ participation in children’s pain management (FPMQ) was also used (Pölkki et al., 2002). The FPMQ is a 32-item questionnaire that requires participants to rate their level of agreement to statements like ‘I was fully aware of what I can do as a parent to alleviate my child’s pain’. The FPMQ utilises a 5-point Likert scale, from 1 (‘Fully agree’) to 5 (‘Fully disagree’). The FPMQ has nine subscales, falling into two categories. The first category includes factors promoting parental participation (receiving sufficient and understandable information, opportunities for emotional support, clearly defined role in the child’s pain relief, opportunities to participate according to personal preference and paying heed to parents’ wishes). The second category includes factors hindering parental participation (lack of information/understanding, underestimation of the parents’ expert knowledge, negative feelings and nurses’ lack of time). The FPMQ has a free text section where parents are asked to comment on their opinions regarding the NpAPS and suggestions for the service regarding their child’s pain management. The qualitative data were gathered from this section. The FPMQ has shown adequate-to-excellent internal consistency in previous studies and has been used in samples of Finnish (α = .57–.9) (Pölkki et al., 2002) and Chinese parents (α = .7) (He et al., 2010). The internal consistency of the FPMQ subscales in this sample was adequate-to-excellent (α = .69–.91).

Demographics questionnaire

Additional demographic details were recorded, including age and gender of the parent and child, number of children and parent employment status. Additional data included the paediatric ward the child was admitted to whilst an inpatient and whether any assistance was provided by other family members when caring for the child at home.

Procedure

The PPPM-SF was completed by parents at home, at four time points: the day of discharge from hospital, day after discharge, day after medication was reduced by the Nurse Practitioner and lastly after the final follow-up telephone call (between 7 and 10 days post-discharge) by the Nurse Practitioner. At the end of the follow-up phone call, the NP reminded parents to complete the PPPM-SF that afternoon. The FPMQ was completed by parents after the final follow-up telephone call from the NpAPS.

Data analysis

All quantitative analyses were conducted in IBM SPSS Statistics 24. Pain scores for discharge from hospital, the day after discharge, the day after medication was reduced and final follow-up were compared. Given the low sample size, Wilcoxon matched-pair signed-rank analyses were performed (Field, 2013). Additionally, frequencies and percentage of total samples were computed for responses regarding factors affecting promoting or hindering parents’ participation in children’s pain management in the FPMQ.

Qualitative responses from the FPMQ free text section were coded using NVivo version 11 software and analysed using thematic analysis (Terry et al., 2017). Within this approach, coding and theme development are subjective and interpretive, and analysis is created by the researcher within the nexus of the data, researcher’s theoretical and conceptual frameworks and their disciplinary and research knowledge, skills and experiences (Terry et al., 2017). Two researchers independently coded the data, working through an iterative process of familiarisation, generating codes and constructing themes. They then met to compare and review potential themes and define, name and report on final themes (Terry et al., 2017).

Results

Sample

A sample of 59 parents consented to take part in the study. The final sample was 16 consenting parents who completed and returned the survey. All 16 parents were female, with 11 of the children who experienced survey also being female (69% of the sample). Only two parents (13%) reported not having previous experience of being at a hospital with their child(ren), and 11 (69%) parents reported receiving assistance from other family members when caring for their child at home following discharge from hospital. For full sample details, please refer to Table 1 including parent demographics. Supplement Table 1 illustrates the age, gender and surgical or medical issue of the children.

Table 1.

Demographic information of the parents and children.

Demographic information
Parents	N (%)	Children	N (%)
Age		Surgery type
26–35 years	2 (12.4)	Spinal surgery/fusion	6 (37.5)
36–45 years	7 (43.8)	Other orthopaedic	5 (31.25)
46–55years	7 (43.8)	Cardiac and vascular	2 (12.5)
Employment		Renal	1 (6.25)
Unemployed	1 (6.3)	Neurological	1 (6.25)
Employed	8 (50)	Pain management for chronic illness	1 (6.25)
Student	3 (18.7)
Full-time mother	4 (25.0)
Number of children (M/SD)	3.06/0.77	Child age (M/SD)	13.06/3.23

Pain scores (PPPM-SF)

Wilcoxon signed-rank tests showed that there was no difference in PPPMF-SF pain score at discharge and the day after discharge (Z = −1.90, p = .06), though pain score was less at medication reduction and final follow-up when compared to discharge (Z = −2.96, p = .003; Z = −2.68, p = .007). Additionally, pain was less at medication reduction and follow-up time points when compared to the day after discharge (Z = −2.28, p = .022; Z = −2.56, p = .011), although no difference in PPPMF-SF pain score was found between medication reduction and final follow-up (Z = −.95, p = .34). These results suggest that pain is not reduced the day after discharge, though a reduction in pain is noted at the medication reduction and follow-up time points (Figure 1).

Figure 1.

Percentage of children by parents’ postoperative pain measure–short form categories recorded at discharge from hospital, day after discharge, day after medication was reduced and follow-up.

Median scores and interquartile ranges (IQR) of the PPPM-SF were calculated at discharge from hospital (Mdn = 6.50, IQR = 2), the day after discharge (Mdn = 7.00, IQR = 5), the day after medication was reduced (Mdn = 4.00, IQR = 2.5) and follow-up (Mdn = 2.50, IQR = 2.5).

Factors affecting parents’ participation in children’s pain management

For promoting factors, a majority of parents fully agreed that hospital staff had provided sufficient and understandable information (n = 11, 68.7% of the sample), clearly defined the role of parents in the child’s pain relief (n = 13, 81.3%) and provided opportunities for emotional support (n = 14, 87.5%). A majority also fully agreed that staff provided opportunities for participation according to personal preference (n = 10, 62.5%), and parents indicated their wishes were considered by staff (n = 12, 75.0%). In relation to hindering factors, most parents somewhat or fully disagreed that hospital staff did not provide sufficient information/understanding about child’s pain management (n = 13, 83.1%). Additionally, the majority of parents somewhat or fully disagreed that hospital staff underestimated the parent’s knowledge (n = 14, 87.6%) and that nurses lacked time to counsel the parent (n = 12, 75.0%). Approximately one-third of parents somewhat or fully disagreed that they had negative feelings during their child’s hospitalisation (n = 6, 37.4%), and 5 (31.3%) parents somewhat or fully agreed with statements related to experiencing negative feelings (see Figure 2). The majority of parents reported some feelings of distress (n = 12, 75.0%), worry (n = 11, 69.7%) or fear (n = 9, 56.2%), and approximately one-third of parents selected ‘Cannot say’ (n = 5, 31.3%).

Figure 2.

Participant attitudes towards promoting and hindering factors in children’s pain management (N = 16).

Qualitative results

The majority of parents felt they were supported by the Nurse Practitioner team; however, themes of (i) uncertainty, (ii) communication and coordination of care and (iii) emotions surrounding their child’s pain highlighted the challenges experienced by parents while managing their child’s pain with support at home.

Uncertainty

The theme of uncertainty related to parents feeling unsure about whether their child should be experiencing pain or whether they should expect a degree of pain following surgery. Parents referred to their uncertainty related to their child’s pain management whilst in hospital and following discharge.

As a parent you want your child to be pain free. I understand they have to expect some pain. My daughter is pretty tough so when she cried and moaned in pain I knew it must have been bad. As a parent you are hesitant to keep asking what pain meds my child can have. I felt like I was being a pain every time I said “she’s in pain” I preferred it when the meds were regularly given to her. (Parent 11)

My son was taken off the button after only 1 and half days after surgery was complete. He was conservative with the ‘button’ and therefore was taken off early as they seemed to think he could move forward- maybe 1 more day would of helped him to be more comfortable that close to surgery completion. 16 year old boys will make out they are ‘tough’ and can handle the obvious pain, but generally they can’t and as soon as the nurse/acute pain service was out of the room, they have a mini melt down over their pain. (Parent 2)

These feelings were also tied to parent uncertainty about managing their child’s pain upon discharge, especially on the first night home after discharge.

The first night at home was scary because my son would say he was in pain and I’d given all the meds and he was still in pain. He would tell me to take him to the hospital but I just remembered that the doc said he was good. A call from hospital on the first night would be helpful cuz I know I was anxious and second questioning myself. Things like, when is the next dose of. (Parent 8)

First day/night pain management was not working as fast as needed due to type of surgery. Not resolved until 2 am in morning so a long night. Written instructions are often helpful as by the time parents get home, they forget what has been told to them due to stress and fatigue. (Parent 10)

Parents’ comments indicate that uncertainty regarding their child’s pain management is high on the first day and night at home following discharge from hospital. This is also a day of increased movement for the child due to mobilisation and transportation from hospital to home which may exacerbate pain.

Communication and coordination of care

Parents highlighted concerns about the interprofessional management of their child’s pain and the impact of poor communication on their child’s pain management:

I was more than happy with the plan from the nurse practitioner and the morning of discharge the doctors changed the plan with no consideration of anything else. This resulted in going home without the agreed on breakthrough pain relief making it very difficult and distressing for myself, my child and the rest of our family. (Parent 13)

Worried how my daughter would go at home and annoyed physio didn’t correlate with nurse for my daughter’s first session as she was due for a top up and physio should of come after top up. It was simply torture for my daughter. I discussed my disappointment with the nurse and from there on they did manage to do physio when she was pain free. (Parent 5)

The comments point to the importance of communication between health professionals in managing a child’s pain and the ongoing impact this may have if communication disrupts the plan for pain management following discharge from hospital.

Emotions surrounding child’s pain

Witnessing their child experience pain and being responsible for their pain management was distressing for parents. Parents described the emotive nature of managing their child’s pain:

Fear, anxiety and worry about child undergoing a major surgery and how he would come out of operation with recovery unknown. (Parent 2)

My child was crying in pain and there was nothing I could do about it. (Parent 11)

The comments reflect the myriad of emotions parents experience when their child is experiencing pain, their sense of helplessness and their worry regarding the outcomes of their child’s treatment.

Discussion

All children had a clinically significant pain score on the day of discharge and the majority on the day after discharge indicating that pain was not managed optimally on these 2 days. This finding combined with the qualitative themes of parent uncertainty about managing their child’s pain highlights this period as being a high-risk period for increased pain. Studies on the incidence of pain experienced by children following short stay surgery reflect similar findings with a high incidence of pain and a large percentage of children re-presenting to health services for pain control (Williams et al., 2015; Wilson et al., 2016).

The reduction in children’s pain indicated on the day after medication reduction and following the last telephone contact by Nurse Practitioners indicates that follow-up continues over an appropriate period. However, there were still a few children (n = 3) with clinically significant pain scores even at the time of the last follow-up phone call. When this occurs, the NPs normally extend their pain management follow-up for these children or if clinically indicated initiate a treating team review or local General Practitioner (GP) referral.

The majority of parents agreed that they were provided with sufficient and understandable information, understood their role in their child’s pain relief, were provided with opportunities for emotional support and could participate in their child’s care in accordance with their preferences and wishes. However, there was still uncertainty about managing pain upon discharge from hospital. Parents felt uncertain about managing their child’s pain at home and also were unsure about how much pain, if any, should be expected. This made it difficult for parents to decide whether or not to contact health professionals on the first day and night of discharge from hospital.

Hesitancy among parents to report post-operative pain has been found in previous studies regarding post-operative pain management and results in paediatric patients receiving inadequate relief for their pain (Valizadeh et al., 2016). When pain occurred during their child’s hospitalisation, parents felt that the health professionals were responsible for managing their child’s pain (Valizadeh et al., 2016). In the present study, parents seemed to rely upon the comments and reassurances made by health professionals prior to discharge concerning their child’s pain management and were uncertain about whether they should question what they had been told.

Research on communication among health professionals concerning paediatric medication management including analgesics has indicated that failure to communicate changes to medication management does occur (Borrott et al., 2017). A common reason identified for this was time pressures on doctors and nurses (Borrott et al., 2017). The flow on effect from ineffective communication among health professionals is the impact on parents and their child’s care, and this has been identified in previous studies (Khan et al., 2015, 2017a). Parents may receive incomplete, delayed or conflicting communication concerning their child’s management which can undermine their experience of care (Khan et al., 2015). This miscommunication can also negatively impact care transitions and contribute to post-discharge complications (Khan et al., 2017b). Parents may perceive problems in health professional communication and teamwork more readily than expected by providers and may identify issues which may go unrecognised by providers themselves (Khan et al., 2015, 2017b). The present study has also identified a need for improved communication within the multidisciplinary team. For example, Parent 5 mentioned timing of pain relief and physiotherapy could be improved. This parent’s comment also highlights the role parents play in advocating for better pain relief for their child.

The experience of having an infant or child undergo surgery creates significant emotional distress and upheaval for parents who often experience feeling shocked, overwhelmed, anxious, scared and worried (Gabriel et al., 2018; Wei et al., 2016). This is particularly significant when parents have experienced repeated surgeries and hospitalisation with their child as previous traumatic experiences can trigger further psychological distress (Iversen et al., 2009). In the present study, the majority of parents indicated they had previous hospitalisations with their child, and this points to the need to consider this in relation to their current emotions and distress regarding their child’s pain management.

There is also growing literature around the impact of parental distress and behaviour and its influence on a child’s experience of pain, and this is particularly evident in paediatric chronic pain literature (Chow et al., 2016). The acute and procedural pain literature also points to a bidirectional relationship between parents and their child in relation to pain with parent distress and behaviours impacting on child behaviours and coping during painful procedures (Brown et al., 2018). Although the present study explored parent feelings associated with managing the child’s pain post-discharge, future research could explore the nature of the parent and child relationship and its impact on pain post-discharge.

Limitations

The small sample size is a limitation to the generalisability of the study. This was not a targeted sample across a specific age group or surgery type and drew upon children from various ages and clinical conditions; therefore, these conclusions cannot be applied to a specific group and are exploratory in nature. Parents’ subjective reports of their child’s pain as a proxy and it would be optimal for future research to include the child’s report of their own pain. Parent expectations concerning their child’s pain following discharge is another area that could be explored in future research to ascertain its impact on pain management at home. Although parents were instructed and reminded to complete the pain scores at the four time points, it is not possible to be completely certain that this occurred, and therefore, this may be a limitation in terms of parental recall. Despite follow-up reminders to return completed surveys, there was only a 27% return rate. It remains a challenge to conduct research among parents who are overwhelmed with the care of their child post-discharge as well as having competing family responsibilities. In future, providing an electronic survey option may result in a better yield; however, a large Norwegian study only showed minor differences in response rates between paper and electronic options (Bjertnaes et al., 2018).

Implications for practice

Health professionals involved in caring for children requiring pain management need to ensure that clear, consistent information and management plans are communicated to parents prior to discharge to help reduce parental uncertainty regarding their child’s pain management at home. As the day of discharge involves increased mobilisation and movement that may exacerbate pain, health professionals also need to ensure effective pain relief prior to discharge to ensure a smooth transition from hospital to home. Following this study’s findings, the NpAPS implemented a text messaging service for parents, so they could request a return telephone call from the NpAPS. This strategy may enhance parental confidence and alleviate their concerns regarding their child’s pain management, especially around the first day and night at home.

Conclusion

The move in health care towards shorter lengths of stay means patients are being discharged during the intermediate stages of recovery, and parents may be responsible for increasingly complex care including medication management and wound care (Lerret, 2009). The present study found that the transition period from hospital to home care is a critical period regarding a child’s post-discharge pain management, and further research is needed to explore strategies that enhance parents’ confidence and capability in these early post-discharge days. Furthermore, improved pain management on the day of discharge from hospital to ensure optimal coverage of pain is a priority to facilitate the smooth transition into successful pain management at home.

Supplemental Material

sj-pdf-1-chc-10.1177_13674935211014742–Supplemental Material for Paediatric post-discharge pain and parent perceptions of support from an Australian nurse practitioner led acute pain service

Supplemental Material, sj-pdf-1-chc-10.1177_13674935211014742 for Paediatric post-discharge pain and parent perceptions of support from an Australian nurse practitioner led acute pain service by Elizabeth M. Forster, Catherine Kotzur, Julianne Richards and John Gilmour in Journal of Child Health Care

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship and/or publication of this article: This research was supported by seed funding from Griffith University and School of Nursing and Midwifery, USQ.

ORCID iDs

Elizabeth M. Forster

John Gilmour

Supplemental Material

Supplemental material for this article is available online.

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Supplementary Material

Please find the following supplemental material available below.

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