Through their eyes: Parental perceptions on hospital admissions for febrile neutropenia in children with cancer
Abstract
Febrile neutropenia requires prompt assessment and antibiotic administration, and is the most common reason for unexpected hospital admission in pediatric oncology. Parents are expected to be vigilant and ‘drop everything’ to take their child to their nearest hospital for assessment if fever occurs. Delays in antibiotic administration are associated with poorer outcomes; however delays are common.
Our aim was to understand and describe the lived experience of parents of children with cancer who received treatment for fever with confirmed/suspected neutropenia. We used descriptive phenomenological concepts to undertake and analyze interviews with parents, who were asked to describe their recent experience of hospitalisation in Queensland, Australia.
Nine participants were interviewed. Five children were treated in the tertiary treating centre and four were treated in smaller regional towns. Three main categories were identified that shaped and characterised parents’ experiences: being heard; confidence in capabilities of health care professionals; and living with anticipated distress and uncertainty. Parents’ experiences were related to the level they needed to advocate for their child’s care across all themes. Familiarity with health care professionals increased confidence and improved parents’ experiences. Maintaining vigilance and managing the child and family’s response to an unexpected admission had a substantial negative effect on parents. Understanding parents’ experiences and perceptions of the management of febrile neutropenia adds to the current body of knowledge and offers potential new insights to improve clinical practice.
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Introduction
Febrile neutropenia is the most common cause of presentation to hospital for immune-suppressed children with cancer, with fever often the only symptom of infection (Loeffen, Te Poele, Tissing, Boezen, & de Bont, 2015). Approximately 34% of all neutropenic episodes in children are complicated by fever(Castagnola et al., 2007). Febrile neutropenia is a medical emergency that requires prompt antibiotic administration to prevent the potentially devastating consequences of sepsis (Pizzo & Poplack, 2015). Mortality rates of 3% are reported (Basu, Fernandez, Fisher, Asselin, & Lyman, 2005). For these reasons, children with cancer, who develop a fever and suspected neutropenia are routinely hospitalised to receive parenteral broad spectrum antibiotics. Gold standard is to receive these within one hour of hospital presentation (Loeffen et al., 2015; Salstrom et al., 2015).
Delayed antibiotic administration in this group of patients is associated with an increased risk of morbidity and mortality (Fletcher et al., 2013). However, delays in antibiotic administration are common (Cash, Deloach, Graham, Shirm, & Mian, 2014; Dobrasz et al., 2013). In children whose care is coordinated by our pediatric cancer centre, we identified delays in up to seventy-five percent of patients (Cox & Bradford, 2014). Barriers are usually multifactorial and include Health Care Professional (HCP) and parental knowledge, communication, triage, medical assessment and laboratory delays, pharmacy and central venous access device (CVAD) issues (Burry et al., 2012). Interventions to reduce time-to-antibiotic administration have largely focussed on process driven factors to better integrate management of febrile neutropenia into routine clinical practice (Burry et al., 2012; Cash et al., 2014).
Parents of children undergoing cancer treatment in Queensland, Australia, receive comprehensive education prior to discharge regarding the management, potential consequences and importance of vigilance towards fever. Highlighted to parents is that treatment delays have been associated with an increase in mortality and morbidity for immune suppressed children (Fletcher et al., 2013). Although cancer treatment length varies according to disease type, the period where vigilance is required can last as long as three years. Such vigilance includes a need for parents to ‘drop everything’ to take their child to hospital if fever occurs and to cope with repeated, unexpected and sometimes prolonged hospital admissions.
An additional challenge for children receiving treatment for cancer in Queensland is the vast geography of the state and a dispersed population. For these reasons, cancer treatment in children is centralised in metropolitan Brisbane. Standard practice within our tertiary facility is for a CVAD, commonly a port-a-cath, to be inserted soon after diagnosis to facilitate venous access. Shared care arrangements with regional hospitals enable families to return home in between treatment. These smaller regional hospitals are often less familiar with managing children with cancer, can be unfamiliar with accessing CVADs, and delays in treatment of fevers in children with cancer are frequent.
Research into the experience of caregivers at pivotal times, such as initial cancer diagnosis or transition to palliative care is well documented (Blume et al., 2014; Darcy, Knutsson, Huus, & Enskar, 2014; Van Schoors, Caes, Verhofstadt, Goubert, & Alderfer, 2015). Understanding the perspectives and experiences of patients, parents and the wider familyin the management of febrile neutropenia has not been explored. However, understanding this phenomenon is important to go beyond the perspective of health care providers and capture the viewpoints of parents who have lived through the experience alongside their child. Awareness of the experience of parents can add to the current body of knowledge on febrile neutropenia, and potentially offer new opportunities to identify solutions to improve clinical practice.
This study is part of a larger project to improve the management of febrile neutropenia in our tertiary cancer centre and the smaller regional hospitals across the state.This aim of the current study was to understand and describe the lived experience of parents of children with cancer treated with fever and suspected/confirmed neutropenia. We sought to understand: ‘What is it like for a child with cancer, their parents and families, to experience febrile neutropenia during cancer treatment?’
Methods
Theoretical Framework
We used descriptive phenomenological concepts to gain understanding of parental experiences and perspectives. Phenomenology research aims to find meaning within a lived experience by understanding and exploring every day experiences from an open viewpoint and without preconceptions or assumptions(Converse, 2012; Dowling & Cooney, 2012; Van Manen, 2016).This approach was considered the most appropriate method to meet the study aims to understand and describe the phenomenon experienced by the parent of a child with cancer rather than from the interpretive lens of the researcher. True phenomenology requires a reflectiveness of the researchers that is abstemious of the basic structures of the experience (van Manen, 2017). Inquiry uses reduction and epoché, a method and attitude,to suspend all judgment about non-evident matter and open a space for meaning to present itself (Balaban, 2002).
Sample
Eligible participants wereparents of a child between the ages of 0-18 years with cancer, who were admitted to a Queensland hospital with suspected febrile neutropenia during 2015. A purposive sampling strategy was used to identify parents with rich and divergent experiences in both metropolitan and regional locations (Liamputtong, 2013).Sampling continued until data saturation occurred, when no new themes related to the research aims were identified (Holloway & Galvin, 2016). Potential participants were provided written information about the study. Information included the aims, requirements, researcher credentials and the voluntary nature of the study. Informed consent was obtained by the researcher (KA) who had no direct clinical relationship with the participant. Interviews were completed by telephone between January and October 2015, and were conversational, where parents were asked to describe their recent experience when their child was unwell with febrile neutropenia. This open approach was used so that information obtained reflected what was important and meaningful to the participant rather than the researcher’s viewpoint(Holloway & Galvin, 2016). Techniques such as follow-up questions, clarification and probing were used to assist participants to recount and reflect on their experience (Liamputtong, 2013).
Data analysis
Descriptive phenomenological concepts guided our anaylsis. Interviews were audio recorded and transcribed verbatim by one researcher (KA). Accuracy of transcribed data was verified by simultaneously listening to the recorded interviews and reading the transcripts by a second researcher (NB). Transcribed interviews were read and re-read by both researchers (KA, NB), to identify key points and obtaining a feel for the whole experience. Analysis commenced with each interview, with the researcher (KA) noting emergence of recurring themes. Data saturation was reached when no new themes emerged. Discussion between authors examined reflexivity and the possibility of bias and the author’s influence on coding. These reflexive processes involved bracketing (documenting the researchers preconceptions of the ‘how and why’), epoché, (setting aside and suspending these preconceptions to focus on the experience itself), and conscious reflection, to evaluate to the significance of any bias during data collection or analysis prior to reintegration into meaning. (Husserl, 2012; Van Manen, 2016)Using NVivo software, two researchers (KA, NB) independently coded data from all interviews iteratively, and grouped codes into themes.Repeatedly throughout the process, each researcher sought meanings understand how phenomena were experienced, where phenomena came from and what they meant to participants. The final coding structure was agreed upon by comparing and contrasting coding structures, emerging themes and categories. In order to stay as close as possible to the original meaning in the data, themes analyzed in view of their significance, similarities, differences and their relationship to each other (Holloway & Galvin, 2016). Exemplars of categories were extracted, focussing on the commonality present in diverse experiences. The findings were then discussed with all authors to ensure consensus.
The study protocol was reviewed and approved by the local Human Research Ethics Committee (HREC/14/QRCH/140)
Results
Sample
As part of the larger quality improvement project, 76 pediatric oncology parents completed a short phone survey about their child’s recent febrile presentation. Seventeen of these families were approached to complete a more in-depth interview about their experience. These families were purposively selected because of their diverse demographic locations and indication from the phone survey their experiences would provide valuable insights to the study. Three parents declined to participate. Interviews were not able to be completed with a further five parents due to an inability to identify a mutually convenient time within two weeks of the child’s presentation. Interviews were completed with nine parents when data saturation occurred and no further parents were recruited. Participant’s characteristics are presented in Table 1. The majority (n=8, 89%) of participants were mothers. Children were all receiving treatment for acute lymphoblastic leukaemia (ALL) and were in treatment phases ranging from induction through to maintenance therapy. Children all received treatment for fever and suspected neutropenia and were admitted to hospital post initial management. In five cases, the child’s most recent hospitalisation was in the tertiary cancer treatment centre, the remaining four were treated in smaller regional hospitals.
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Findings
Parent experiences caring for children with febrile neutropenia were shaped by their sense of being heard by health care providers, their confidence in capabilities of health care professionals, and living with anticipated distress and uncertainty. The composite experience of parents was shaped by each of these themes. (Figure 1). Being heard by Health Care Providers (HCPs) was an important aspect of the relationship between parents and HCP; parents described how different HCP did, or did not listen, and how they modified their behaviour to try and be heard. The experience of being heard, or not, then affected parent’s confidence in the provision of care to their child. A further three subthemes are described within the confidence in capability of health care professionals category. Their trust in HCPs to provide the care required also depended upon receiving consistent information and believing HCPs had the appropriate skills and knowledge to provide care. When unfamiliar staff, changes in routines or clinical practice were observed, parents described their experience of feelings of distress and uncertainty, from both their child’s and their own perspectives. A further five subthemes are described within this category. Each of these themes are described in more detail below.
Being heard
Being heard was not just about parents feeling staff listened, but also that they understood what was being communicated and were empathetic to the situation. Positive experiences were described when parents felt that staff took the time and enabled their child’s preferences where possible. As one parent described:
[I was] impressed in a sense that somebody had actually stopped and brought to their attention that there might be another way he might like it, and they seem to be really quite open to letting him direct what is his preference. (Metropolitan parent)
Parents described needing to learn to ‘speak the language’ by using the correct terminology such as ‘neutropenia’, in order to ensure HCP heard them; one parent believed this was what facilitated prompt treatment for her child.
Parents reflected on how positive experiences were related to particular HCP actions. For example, HCPsactions associated with positive experiences were identified by both regional and metropolitan parents as those that listened to parents, and advocatedto other HCPs on their behalf for the care of their child, and thus inspired trust. Key people most commonly identified included nursing regional case managers and medical and nursing staff with specific oncology training.
Parents who felt they weren’t being heard by HCP’s described the need to strongly advocate for their child’s care,and these experiences were associated with high parental stress levels. Exemplars of parents’ experience of being heard are presented in Table 2
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Confidence in the capabilities of Health Care Professionals
Parents described the angst they experienced when relying on HCP to provide care to their unwell child. When parent’s experience of being heard was negative, their perception of the capabilities of HCP to provide care to their child could be effected. Conversely however, other parents described high confidence with HCP capabilities, despite suboptimal communication. Both positive and negative experiences were categorised into three further three subthemes; consistent information and advice; knowledge and skill level; and familiarity. Exemplars are presented in Table 3.
Consistent information and advice
Confidence in capability of HCPs to manage a child’s care was impaired when inconsistent information was given. This was especially pertinent in relation to initial management of a febrile episode and the processes around discharge. One mother described her experience as “overwhelming” when she had to repeatedly advocate for her child to receive treatment according to the current fever management protocol. Another mother reported her child was devastated when, despite fulfilling initial discharge criteria, medical staff changed the goalposts and he was kept as an inpatient. As the mother described:
For kids that’s huge, because he’s like, No, they said to me if I do this, this and this, then we’ll be out. (Metropolitan mother)
Two other regional parents reported that they needed to re- present to hospital within one hour of being initially discharged because of on-going concerns about their child. This resulted in further distress to their child due to a need to re-access their CVAD as well as disappointment about being kept again as an inpatient. Parents reported that having a plan with HCPs made a huge difference, especially around the reason for interventions, not just explanation of what the interventions are.
Knowledge and skill level
Parents reported having confidence in capabilities of HCP’s that demonstrated knowledge and skills managing pediatric oncology patients. Excellent and streamlined experiences were reported by some parents.
Regional parents reported their varied experiences of presenting to sites where the majority of staff had limited exposure to, and knowledge of, management of pediatric oncology. There were multiple time points where lack of confidence in HCP’s knowledge of pediatric oncology management negatively affected parents. One parent compared how easy and less stressful it was at the metropolitan centre where simply identifying the child as an oncology patient resulted in immediate action. In other facilities, parents had decreased confidence in HCP when they perceived HCPs were less familiar with oncology fever management. As one parent explained:
That’s the main worry I have is I’m going to get someone that has no idea about oncology. So it takes the confidence away because we’re used to staff that just know us and know what needs to be done, and they just get on and do it, the nurses are beautiful; they’re lovely, and they do listen. But they [less experienced staff] just don’t seem to have any idea about what needs to be done, or what happens or anything like that. (Regional parent)