Article Text

Parental perspectives on evaluation and management of fever in young infants: an interview study
  1. Sukanya De1,2,
  2. Allison Tong1,2,
  3. David Isaacs3,
  4. Jonathan C Craig1,2,4
  1. 1Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia
  2. 2Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, New South Wales, Australia
  3. 3Department of Infectious Diseases and Immunology, The Children's Hospital at Westmead, Sydney, New South Wales, Australia
  4. 4Department of Nephrology, The Children's Hospital at Westmead, Sydney, New South Wales, Australia
  1. Correspondence to Dr Sukanya De, Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW 2145, Australia; dr.sukanyade{at}gmail.com

Abstract

Background Young febrile infants typically undergo meticulous evaluation to rule out serious bacterial infection. Parental perspectives on the process of evaluation and management of febrile infants can influence treatment satisfaction and outcomes. This study aimed to describe the perspectives of parents of young infants presenting to hospital with fever.

Methods We conducted semistructured, face-to-face interviews with parents of healthy, term infants aged less than 3 months, admitted to a tertiary children's hospital in Sydney, Australia, during the management of a febrile illness. The interview transcripts were thematically analysed.

Results 36 parents of 27 infants participated. All infants underwent a complete sepsis work up, received empiric antibiotics and made a complete recovery. Parental empowerment was central to the three themes identified: expecting reassurance and support (overwhelming responsibility, heightened vulnerability), facilitators for parental empowerment (medical attentiveness, medical partnership, gaining closure and a sense of validation), and barriers to empowerment (unexpected medical seriousness, relinquished control, failed expectations of support and limited capacity for advocacy).

Conclusions Caring for a febrile infant is overwhelming for parents. When confronted by unexpected tests and hospitalisation, they fear the possibility of a severe illness, experience a sense of helplessness and loss of control as their infant undergoes painful tests, and doubt their own ability to meet their infant's needs. Family-centred care strategies that inform and support parents, acknowledging their concerns and distress, while involving them in the medical management, may promote parental empowerment and build better alliances between parents and healthcare providers.

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What is already known on this topic?

  • Young infants with fever typically undergo extensive evaluation in hospital.

  • Parental dissatisfaction with medical management can cause increased parental concern, inappropriate parental fever management practices and increased health service usage.

What this study adds?

  • Parents of febrile infants present to hospital expecting reassurance and support but may instead experience a sense of relinquished control, inadequacy, and even guilt.

  • Parents value interactions that inform, support, and involve them during the course of medical management.

  • Having concerns acknowledged and addressed and being provided with an explanation of the cause of the illness reduces parental anxiety allowing them to gain closure.

Introduction

Up to 40% of infants <6 months of age experience one or more febrile episodes.1 Fever causes significant parental anxiety,2–5 especially for parents of very young infants or first-time parents.6 ,7 For many, the febrile episode is their first experience of childhood illness and may have a strong influence on how they view the healthcare system and their future healthcare seeking behaviours.8

Between 7% and 25% of young febrile infants have an underlying serious bacterial infection.9 ,10 Serious bacterial infections in this age group often lack localising signs making clinical detection challenging.11 Although indepth evaluation of young febrile infants to rule out bacterial infection is standard practice,12–14 little is known about parental perspectives and experiences in relation to the processes involved. Hospitalisation and medical procedures performed on young infants can be anxiety-provoking for parents.15 Dissatisfaction with the process of medical evaluation and management can cause increased parental concern, inappropriate parental fever management practices and increased health service usage.6 An understanding of parental perspectives on the evaluation and management of young febrile infants can inform ways to support parents and improve treatment satisfaction and outcome. The aim of this study is to explore the concerns, beliefs, attitudes and perspectives of parents of young infants hospitalised with a febrile illness.

Methods

We applied the consolidated criteria for reporting qualitative research (COREQ).16

Online supplementary table S1 details how the COREQ criteria were addressed.

Participant selection and setting

Parents of febrile infants aged <3 months admitted to a tertiary children's hospital in Sydney, Australia, between 1 November 2011 and 31 December 2012 were eligible. We used purposive sampling to include a range of demographic characteristics such as age, gender and birth order. In accordance with the study focus on uncomplicated febrile illness, we included parents of previously healthy febrile infants with an unremarkable clinical course and uneventful recovery. Either one or both parents were interviewed depending on their preference. We excluded parents of infants with complex medical background, prematurity, prolonged hospitalisation and complex interventions because their perspectives were likely be influenced by these additional factors. Non-English speaking parents were excluded due to lack of resources for interpretation. The interviews were conducted by the first author (SD), a paediatrician not involved in the care of families participating in the study.

Participant recruitment

Eligible parents were identified by SD by reviewing daily hospital admissions. They were approached towards the end of the hospital stay to determine their willingness to participate. Parents who consented were enrolled in the study.

Data collection

The interview prompts, detailed in online supplementary appendix A, were developed based on clinical experience, literature review, feedback from paediatricians and researchers, and were piloted with five parents. Semistructured, face-to-face interviews were conducted just prior to discharge from hospital, to enable a clear parental recollection of events and experiences while capturing the complete inpatient experience. The interviews were conducted in the privacy of a meeting room located in the ward. If both parents participated, they were interviewed together. Interviews were audio recorded and transcribed verbatim. Participants were given the opportunity to receive a copy of their own transcript but did not request to do so. Repeat interviews were not conducted. We continued participant recruitment and data collection until no new knowledge was being obtained in the concurrent analysis (data saturation).

Data coding and analysis

The transcripts were entered into Hyper RESEARCH (Research Ware Inc, USA, V.2.8.3), a software package used to store, code and search data. Data collection and data analysis were conducted concurrently following grounded theory principles; data were coded and thematically analysed.17 SD identified concepts inductively from the data, and similar concepts were grouped into themes. Participants were not contacted to comment on the findings but the preliminary themes were discussed with AT who read the transcripts to ensure all data had been captured (interviewer triangulation). Conceptual links among themes were identified and mapped into a thematic schema.

Results

Of 39 parents approached, 36 (92%) parents of 27 infants participated. Reasons for non-participation included parental time constraints, unavailability on the day of discharge or unwillingness to be audiotaped. The interview duration ranged between 30 and 60 min.

Participant characteristics

Participants were 23–44 years old (table 1). There were 11 (41%) first-time parents. Just over half of the infants had been unwell for less than 24 h. Viral illness was the most common diagnosis. All infants had a good clinical outcome.

Table 1

Participant characteristics

Thematic analysis

Parental empowerment (to manage their infant's illness) was central to the three themes identified: expectation of reassurance and support (overwhelming responsibility, heightened vulnerability), facilitators to parental empowerment (medical attentiveness, medical partnership, gaining closure and a sense of validation) and barriers to empowerment (unexpected medical seriousness, relinquished control, failed expectations of support and limited capacity for advocacy) (figure 1). Parents presented to hospital expecting reassurance and support. Positive experiences enabled them to resolve uncertainties and fears and regain confidence in their ability to care for their infant. Barriers to parental empowerment heightened their sense of helplessness, loss of control and inability to meet their infant's needs. Selected illustrative quotations for each theme are presented in tables 2 and 3.

Table 2

Illustrative quotations relating to parental attitudes at presentation to hospital

Table 3

Illustrative quotations relating to the facilitators and barriers to parental empowerment

Figure 1

Thematic map of parental attitudes and experiences.

Parental attitudes at the time of presentation to hospital

Expectation of reassurance and support

Participants brought their infant to hospital hoping to ascertain the cause of the fever and gain reassurance that their infant was not seriously ill (table 2). They expected guidance on managing the fever.

Overwhelming responsibility

Many participants felt overwhelmed by the responsibility of caring for their febrile infant. Hearing anecdotes of adverse outcomes of fever in infants caused some to feel anxious. Many feared the possibility of a serious underlying infection such as meningitis. Others believed that the fever per se could cause adverse effects such as seizures. Some worried that they may have ‘done something wrong’ in terms of fever management.

Heightened vulnerability

Participants believed young infants were more vulnerable, had a weaker immune system and could deteriorate rapidly. They felt uncertain about managing fever and questioned whether treatment for older infants (eg, paracetamol) could be used safely. They felt bewildered as their infant could not verbalise what was wrong. There was apprehension about missing their infant's cues of serious illness. First-time parents were particularly anxious and were ‘hanging on to [the doctor's] every word’.

Parental attitudes and experiences during the course of hospitalisation

Facilitators of parental empowerment

Facilitators of parental empowerment included medical attentiveness, medical partnership, a sense of validation and gaining closure (table 3).

Medical attentiveness

Participants felt reassured by prompt and thorough assessment. Mothers in particular felt relieved their infant was being monitored in hospital, as this alleviated the pressure of being responsible for detecting signs of deterioration. Many found the tests distressing to watch, but expressed relief that the worst possibilities were being ruled out. Some perceived that doctors and nurses were very professional and skilled, and felt comforted that their infant was in ‘good hands’.

Medical partnership

Participants who felt the medical team engaged and supported them experienced a heightened sense of involvement and control. Having a clear explanation of the management plan, timely updates, and opportunities to ask questions or discuss treatment options enhanced their trust in the medical team. Some valued the option of being present during procedures to comfort their infant. “…it was actually quite nice to be there with him. It was reassuring to see what had happened and I was able to hold his hand and comfort him.”

In a couple of instances, medication dose error or multiple failed attempts at intravenous cannulation caused some anger and frustration. However, they appreciated receiving an honest explanation of the incident which helped re-establish trust.

A sense of validation

At times, participants feared they would be dismissed as being ‘over-protective’ or ‘paranoid’. They felt relieved if their actions and concerns were recognised as appropriate. Participants who experienced distress as they observed their infant undergo tests or opted not to watch felt supported when their concerns were acknowledged.

Gaining closure

Participants felt reassured when the fever resolved and their infant resumed normal sleep, feeding and settling patterns. Receiving a definite diagnosis was of paramount importance to most participants since it meant that a cause had been identified that could then be treated, facilitating a sense of closure. “Once we got that back [diagnosis of urinary tract infection] my stress levels went right down and it was a matter of time while he got his antibiotics.”

Barriers to parental empowerment

Barriers to parental empowerment identified included unexpected medical seriousness, unmet expectation of support, relinquished control and limited capacity for advocacy (table 3).

Unexpected medical seriousness

Participants experienced disbelief and shock when their infant had to undergo tests and be hospitalised. Many were alarmed by the perceived urgency and degree of medical scrutiny on arrival at the emergency department, causing them to straight away ‘fear the worst’.

Relinquished control

Participants often felt excluded from or unable to contribute meaningfully to the medical management and decision making. Some believed they had ‘no choice’ but to endure the medical process. They felt powerless as they witnessed their infant's distress and pain. Many found the lumbar puncture particularly difficult. For some, waiting for the assessment or for test results was agonising as they did not know what to expect and were ‘stressed and imagining the worst’.

Unmet expectation of support

Some participants felt that explanation of the test procedure or treatment was inadequate. They doubted the necessity of invasive tests. Some believed these were being done simply to comply with hospital protocols. Others perceived the indication for or the nature of the test was explained to them in a manner that made them ‘imagine the worst’ possibilities. One couple were devastated on being told the need for a lumbar puncture, convinced that their child had meningitis and would be brain damaged for life. Another felt horrified when they envisaged that the lumbar puncture process involved ‘the needle going into the head’. “It's hard to take all the information in and the wording is important—when they talked about the lumbar puncture that they needed to take the fluid from around the baby's brain we imagined the needle going into the head, I was standing, I felt my head spin and had to hold on to something.” (Mother, 31)

Participants expressed anger and disappointment when they perceived a lack of empathy from health professionals. When informed their infant had a viral illness many were left feeling frustrated, believing this was an ambiguous, inconclusive and inadequate explanation for the fever. They were anxious and uncertain, anticipating the possibility of illness recurrence as they were unable to exercise any preventative measures.

Limited capacity for advocacy

Participants believed they were expected to rapidly comprehend a vast amount of medical information. Being stressed and in a busy and daunting clinical environment, they felt unable to process all the information. “When you are sleep deprived, when you are concerned, [and] when you are worried sick and things happen so quick, your head seems to go blank.”

Some perceived they were given conflicting information or were perplexed by medical jargon. Although encouraged to ask questions, they were at times unsure about the ‘right questions’ to ask. They favoured fact sheets as means of receiving information that is easy to comprehend and conveys a consistent message. “Fact sheets would be really good. It is hard to ask questions when the doctors are rushing in and out.”

Others were hesitant about voicing their concerns, fearing they might overstep their parenting role or obstruct or delay medical management. They then felt guilty when problems arose: “I would have stayed in the room. Maybe if I was there I could have stopped it [multiple unsuccessful attempts at cannulation]. No matter how difficult it may be for me to watch I have to be present.”

Discussion

Parents of febrile young infants present to hospital seeking reassurance and support. Receiving a comprehensive explanation of the management plan with opportunity to be involved and make informed decisions where appropriate fosters a parental sense of trust and partnership with the medical team. Having concerns and distress acknowledged and addressed in a timely manner by health professionals reduces parental anxiety and renews their faith in their judgement. Having a clear explanation as to the cause of the illness allows parents to gain closure. Parents value such interactions that inform, support and involve them during the course of medical management.

While parents appreciate the comprehensive evaluation of febrile infants, unexpected tests and hospitalisation are daunting for most. Parents often believe they have no say in the medical management. Many feel limited in their capacity to advocate for their child in a medical setting. When parents feel unsupported, disregarded and uninvolved in the medical management, they are disappointed and sometimes angry. When left with unanswered questions regarding the cause for the fever or emotionally traumatised by test procedures without an opportunity to debrief, parents are fearful of illness recurrence and unsure how to proceed if the illness recurred. At times they feel guilty for not advocating on their infant's behalf. Despite their infant making a complete recovery, some remain disappointed with the overall medical encounter.

To our knowledge, only one other study has explored parental perspectives on the evaluation of febrile infants.18 The study identified important parental perspectives including vulnerability to stress, financial burden and perceived complications of hospital stay but was limited by the study design where a convenience sample was studied a considerable span of time after the actual admission, using a questionnaire survey method which does not capture the range and depth of information obtainable through face-to-face interviews. Our study provides further insight into the reasons underpinning parental anxiety relating to the hospitalisation and management process.

Some of our findings are similar to reports from studies of views, preferences and perspectives of parents of infants as well as children beyond the first 3 months of life presenting to hospital for fever or other acute illnesses. Parental desire for information on managing fever in their children has been previously reported.7 The importance of communicating information was highlighted in a parental survey, which found that parents valued being involved in the care and having concerns acknowledged.19 Parental preference to be present during invasive procedures has been reported previously.20 One randomised control trial demonstrated that parental presence did not interfere with the performance of the procedure but reduced parental anxiety.21

Our study provides an indepth understanding of parental perspectives on the evaluation of febrile infants. We used purposive sampling to capture a range of demographics and continued data collection until saturation. However, non-English speaking participants were excluded, so the applicability of our findings may be limited to parents without language barriers.

Our findings support a family-centred care model in the evaluation and management of febrile young infants. The American Academy of Paediatrics advocates family-centred care approaches for ‘better health outcomes, wiser allocation of resources, and greater patient and family satisfaction’,22 urging paediatricians to ‘share complete, honest, and unbiased information with families in ways that are useful and affirming’. Based on our findings, we have outlined strategies to help address some of the key challenges for parents during the course of evaluation and management of their febrile infants (table 4). Many parents voiced a strong desire for information on preventive measures, managing fever and tests/procedures. Written information in the form of fact sheets and visual aids such as diagrams were viewed favourably which suggests that provision of information in print materials would be an essential part of ‘family-centred care’.

Table 4

Suggested clinical strategies to address key challenges for parents during the evaluation and management of their infants’ febrile illness

We conjecture that, after discharge, some parents may struggle to come to terms with the recent hospitalisation and would benefit from ongoing support. Prospective studies are needed to ascertain the perspectives of parents postdischarge.

Conclusions

Adopting a family-centred care model in the evaluation and management of febrile infants that supports parents and involves them in the medical management may establish parental trust and partnership while minimising parental anxiety and helplessness. Strategies that facilitate this model of care should be implemented in medical units caring for young infants.

Acknowledgments

We thank the parents who participated in the interviews for sharing their valuable time, honest and insightful perspectives, and opinions; and the Department of General Medicine at The Children's Hospital at Westmead for facilitating this study.

References

View Abstract

Supplementary materials

  • Supplementary Data

    This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.

    Files in this Data Supplement:

Footnotes

  • Contributors SD: conceptualised the study, assisted with the study design, recruited participants, conducted the study interviews, undertook data coding and analysis, compiled the results, drafted the initial manuscript, and approved the final manuscript as submitted. AT: assisted with the study design, helped develop the interview prompts, supervised data coding and thematic analysis, reviewed and revised the manuscript and approved the final manuscript as submitted. DI: reviewed the thematic analysis and presentation of results, reviewed and revised the manuscript, and approved the final manuscript as submitted. JCC: supervised the design and conduct of the study, data coding and thematic analysis, reviewed, and revised the manuscript, and approved the final manuscript as submitted.

  • Competing interests None.

  • Ethics approval The study was approved by The Children's Hospital at Westmead Human Research Ethics Committee.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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