Abstract
Background
Despite being a core component of family-centered and compassionate care, children's pain is often undertreated in Canadian hospitals. Nurses’ and other healthcare professionals’ (HCPs) ability to understand and respond to a child and their family's pain care needs is integral to improving this care in a family-centered manner.
Purpose
To understand nurses’ and other HCPs’ perceptions of child and family needs to make care more collaborative and patient- and family-centered.
Methods
Eighteen participants were recruited and represented the specialties of nursing (
Results
Participants felt that pain care was important, but that it needs to take greater priority in the hospital. In our analysis, we identified four core needs that nurses and other HCPs have to provide better pain care: 1. Better acknowledgement of child and family experiences; 2. Better visual and written knowledge translation tools for patients and families; 3. Better provision of verbal pain education to children and families by nurses and other HCPs; and 4. Help for patients and families to advocate for better pain care when they feel their needs are not being met.
Conclusions
Nurses and other HCPs value patient- and family-centered pain care, and wish to empower families to advocate for it when it is sub-optimal.
Introduction
“Family-centred children's pain care should revolve around finding out what families need and what they what they want at every level… medically, physically, socially, psychologically… and working with families where they are, given their understanding of pain, their understanding of the health care system. Sometimes, actually in very early stages, it's about helping them understand how the healthcare system works in our institution and in the area” (Participant 14).
All children will experience painful procedures in their childhood, whether as part of newborn metabolic screening, routine immunizations, or requiring a skin-breaking procedure for health care investigations. Additionally, between 11 and 38 per cent of children and youth will experience chronic pain (Neville et al., 2020). Despite this, children's pain management in Canadian hospitals remains suboptimal (Ali et al., 2016; Gates et al., 2018; Shave et al., 2018; Stevens et al., 2011). Although there is an ever-growing body of literature on how to best manage children's pain, this knowledge is often slow to be put into practice (Chambers, 2018).
When nurses and other healthcare professionals (HCPs) effectively integrate caregivers and children as part of their care team, they are able to provide higher-quality and more timely care (Matziou et al., 2018). We now know that family-centered pain care must be a priority when providing care for children (Byczkowski et al., 2016), as inadequate pain management can result in poorer outcomes and extended hospital stays (von Baeyer et al., 2004; Young, 2005). Seeing their child experience preventable pain can also be significantly distressing for caregivers (Smith et al., 2007); further if caregivers are unsure how to best to support their child during these stressful times, their child's distress during current and future procedures can increase (Moline et al., 2021). When care is family-centered, children's, caregivers’, and nurses’ and other HCPs’ overall satisfaction with their care experience improves (Byczkowski et al., 2016).
Nurses and other HCPs play an important role in family-centered pain care, by either facilitating or restricting a family's involvement in their child's pain management (Govindaswamy et al., 2022). For example, nurses can educate children and their caregivers about pain management strategies and encourage both child empowerment and direct caregiver involvement in pain care. Alternatively, if nurses and other HCPs do not accurately assess families’ needs, they may stand in the way of caregivers who want to help manage their child's pain (Govindaswamy et al., 2022). This study sought to understand nurses’ and other HCPs’ needs to promote patient- and family-centered pain care needs at a Canadian tertiary pediatric center. An understanding of nurse and HCP needs in this area can facilitate the broad promotion of patient- and family-centered care and improved integration of patients and families into the care team.
Methods
Setting
This sub-study of an existing qualitative data set on HCPs’ perspectives on pain management was conducted at the Stollery Children's Hospital, a tertiary pediatric center located in Edmonton, Alberta, Canada. The facility has 218 beds and is a national leader in pediatric cardiac surgery and organ transplantation (Alberta Health Services, n.d.). The hospital has a facility-wide pain management committee, an acute pain service that works to treat complex pain for inpatients, and an outpatient chronic pain clinic. The interviews for this study were conducted as part of a local quality improvement initiative, and these data therefore received formal exemption from ethics approval from the University of Alberta's Research Ethics Board.
Interview guide development and participant recruitment
A guide for semi-structured interviews was co-developed by members of the study team (EK, SA), clinical staff, and a person with lived experience of pain. Interviews explored themes of pain management at the hospital and how patients and families can be better centered in children's pain care. Participants were recruited through snowball sampling (Green & Thorogood, 2018; Merriam & Tisdell, 2016) by first recruiting interested members of the hospital's pain management committee. Interviews were conducted via online and in-person interviews during the Fall of 2020 by a study team member (EK), who is a Caucasian female knowledge mobilization specialist. Interviews lasted between 25 to 75 min. Verbatim transcripts were produced, anonymized, and analyzed using MAXQDA2020. Participants were given a $25 electronic gift card as a token of appreciation.
Analyses
The data were coded using an inductive, semantic approach in order to identify salient themes identified by participants in their interviews (Braun & Clarke, 2006). This coding used a codebook, whereby themes were selected as summaries for different topics, with inclusion and exclusion criteria being noted in the codebook (Braun & Clarke, 2021; Guest et al., 2012). Primary coding was completed by one team member (EK), with a second team member (LI) coding a portion of the dataset to ensure reliability. This approach to coding identified the various areas of pain management practice discussed by participants including pain management strategies, pain assessment, family-centered care, advocacy, resources for clinicians and families, and evidence-based practice.
Results
Eighteen participants were recruited and represented the specialties of nursing (
We identified four main themes that define nurse and HCP needs in order to better support family-centered pediatric pain care: 1. Better acknowledgement of child and family experiences; 2. Better visual and written knowledge translation tools for patients and families; 3. Better provision of verbal pain education to children and families by nurses and other HCPs; and 4. Help for patients and families to advocate for better pain care when they feel their needs are not being met.
Acknowledging patient and family's pain experiences
Ideally, children's experience of pain and their family's reaction to those experiences should be accepted and validated by all nurses and other HCPs. Unfortunately, participants noted that patients’ and families’ experiences of pain are often minimized or misunderstood by nurses and other HCPs from many disciplines at the hospital. One participant noted that, when a child's pain experience is poorly understood, this not only negatively impacts patient- and family-centered pain care, but the child's healing, as well: “ “
Participants noted the necessity of listening to children and families about their pain experiences. Acknowledging these experiences is integral to providing patient- and family-centered pain care.
Written knowledge mobilization tools
When presenting to a hospital for care, whether in an emergency or for a planned surgery/visit, participants highlighted that most families do not know what pain management strategies are available to them. Participants noted that sharing knowledge mobilization (KM) tools such as posters, pamphlets, or visual reminders with families is one method to achieve this. While KM efforts are often focused on clinicians, patients and families can benefit from such efforts, as well. For example, some participants mentioned the utility of posters at the bedside that inform patients and families that they may ask for topical anesthetic before a skin-breaking procedure: “
Some participants mentioned that they sometimes have difficulty practicing in an evidence-informed way when families have sought resources on their own outside of the hospital, which may make recommendations that are not evidence-informed. When discussing online networks for children and youth with chronic pain, one participant mentioned that difficulties can arise: “
Verbal pain education for patients and families
In their interviews, participants spoke about the need for nurses and other HCPs to educate families and children if the child was old enough and cognitively able to understand shared information. As mentioned above, families who often receive care at the hospital are usually aware of the different pain management strategies available for their child. Families less experienced with receiving care in the hospital may be unaware of different strategies, such as the availability of topical anesthetic or that nurses can instruct caregivers on how to perform comfort positioning with their child. As Participant 4 mentioned, “
When patients and families do receive education, this education is usually provided verbally and just prior to or during an admission or procedure. For example, some children visit the hospital preoperatively before major surgeries to speak with the anesthesiologist, and the team will “ “ “
Some participants mentioned that there needs to be continued improvement at the hospital to make children's pain experiences truly patient- and family-centered with a focus on respect and dignity, information sharing, collaboration, and joint decision-making. To aid in retention, nurses and other HCPs should consider sharing information in a variety of formats: “
Enabling patient and family advocacy through pain education
Participants felt that families can and should take an active role in their child's pain management experience, although families’ role can vary based on their knowledge and comfort in advocating for pain care for their child. Participants shared that KM tools and point-of-care education are important components that can help families and patients feel more comfortable to do so: “
Participants acknowledged that coming to the hospital can be “ “
Discussion
When children's pain is poorly managed, they may experience a number of adverse effects, such as longer hospital stays, slower healing time, future healthcare avoidance or overuse, increased likelihood of developing chronic pain, and increased anxiety regarding painful procedures in the future (Buskila et al., 2003; Kennedy et al., 2008; von Baeyer et al., 2004; Young, 2005). As such, it is critical to identify where nurses and other HCPs need more support to enable the best possible patient- and family-centered pain care. Participants in this study acknowledged that pain management is a patient and family-centered priority for nurses and other HCPs, along with the children and families, themselves.
While patient- and family-centered pain care continues to gain acceptance among nurses and other HCPs, there is currently little research on their needs to provide patient- and family-focused pediatric pain care. In a study considering trainee physicians’ perspectives of caregivers’ needs, trainees believed children needed better pain management and caregivers desired better communication and more empathy (Govindaswamy et al., 2022). Caregivers place high importance on their child's appropriate and timely pain management, yet nurses and other HCPs still underestimate the stress that a child's pain may cause the caregiver (Govindaswamy et al., 2022). While participants in our study also acknowledged that children's pain is not always optimally managed at the hospital, more decisive was their emphasis on different forms of communication for caregivers and children: receiving knowledge translation tools and education, having their experiences being listened to and acknowledged, and being provided with opportunities to learn how to advocate for better pain care.
While families do actively seek out information on how to improve their children's pain experience, up to 75 per cent of patients report not having the information they need to take an active role in their own care (Chambers, 2018). KM is an important consideration in patient and family-centered pain care, as it serves to reduce the knowledge-to-practice gap (Barwick, 2016) through the dissemination of resources or tools. Nurses and other HCPs should play an even greater and direct role in being disseminators of this knowledge by ensuring evidence-informed KT tools, ideally co-created with patient and family partners, are available for families to aid the retention of pain management knowledge (Watson & McKinstry, 2009). The combination of nurses’ and other HCPs’ commitment to patient- and family-centered pain care, to working with patients and families as partners in care and the provision and discussion of evidence-informed pain-management tools in multiple, accessible formats (e.g., posters, text messages, email, social media) will result in pain care becoming more patient- and family-centered. Patients and families, armed with information and increased confidence, can then act as essential members of the health care team, working towards the shared goals of comfort and pain reduction.
Participants’ views in this study echoed other literature that suggests nurses and other HCPs often rely on children and families to be proactive to advocate for better pain management rather than offering a multimodal pain management approach themselves (Twycross & Collins, 2013). The presence of a caregiver can indeed improve a child's pain experience as the caregiver assesses their child's pain and helps empower their child to play an active role in their own care. Nurses and other HCPs often insist that caregivers provide important insights on their child's pain experiences and therefore should advocate (Simons et al., 2020; Vasey et al., 2019). However, a lack of role clarity and misunderstanding of child and family advocacy often means nurses and other HCPs will not elicit pain reports or believe child and family reports of pain, leading to the poor management of children's pain (Simons et al., 2020; Twycross & Collins, 2013; Vasey et al., 2019). Nurses and other HCPs may support patient- and family-centered pain care and family advocacy in theory, but often do not either fully understand or ascribe to the principles of patient- and family-centered care including empowerment, engagement, and true partnership (Vasey et al., 2019). Additionally, there is often little opportunity to practice and receive feedback in PFCC-supportive behaviors. Nurses and other HCPs may have difficulty accepting children's and families’ assessment of pain and suggestions to improve pain management. Children and families must be seen as equal members of the care team, which includes being respected, encouraged, and addressed. By first acknowledging the patients’ and families’ expertise in their own child, their previous pain experiences, and knowledge, nurses and other HCPs can best plan, then take an active role in teaching patients and families how to advocate for better care during their current or future stays.
Limitations
Participants were primarily from the nursing and child life professions. While nurses and child life specialists are essential to children's pain management, family support from physicians and other practitioners from different specialties is also required to optimally manage children's pain. Additionally, 17 out of 18 participants were female, and may not accurately represent the views of non-female participants. Further, the experiences and viewpoints of individuals who were less in favor of bettering children's pain management were not reflected in this study as all participants voiced supporting its improvement. Finally, generalizability to other centers may be limited as this was a single-center study.
Conclusions
Nurses and other HCPs in our study acknowledged the importance of patient- and family-centredness to improving children's pain care but emphasized that they want patients and families to take an active role in advocacy to help them provide this care. Nurses and other HCPs value patient- and family-centered pain care but need the following to provide adequate pain care: 1. Better acknowledgement of child and family experiences; 2. Better visual and written knowledge translation tools for patients and families; 3. Better provision of verbal pain education to children and families by nurses and other HCPs; and 4. Help for patients and families to advocate for better pain care when they feel their needs are not being met.
Footnotes
Acknowledgements
We would like to thank Ms. Louisa Smith and Ms. Delane Linkiewich for their assistance in developing the interview guide and all participants for their time and willingness to share their experiences of pain management at the hospital.
Author's note
Lexyn Iliscupidez, Department of Medicine, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada.
Declaration of conflicting interests
The authors 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 received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors. Gift cards for participants were funded through an existing partnership grant from the Women and Children's Health Research Institute, generously funded by the Stollery Children's Hospital Foundation at the University of Alberta.
