Original article
The impact on parents of a child’s admission to intensive care: Integration of qualitative findings from a cross-sectional study

https://doi.org/10.1016/j.iccn.2008.10.002Get rights and content

Summary

Objectives

In this study, parents were asked which aspects of their experience of having a child in intensive care had caused them the most distress and how they continued to be affected by these experiences.

Research methodology

Semi-structured interviews held with 32 mothers and 18 fathers of children admitted to a paediatric intensive care unit 8 months earlier, were audiotaped, transcribed and subjected to a thematic analysis.

Setting

The setting was an eight-bed paediatric intensive care unit in an inner city teaching hospital.

Results

Significant themes included the vividness of parents’ memories of admission; the intensity of distress associated with times of transition and the lasting impact of their experience, in terms both of the ongoing need to protect their child and in relation to their priorities in life. Fathers reported different coping strategies, spent less time on the unit and were less likely than mothers to report fearing that their child would die.

Conclusions

Parents report significant and persisting distress. Further research is needed on how best to support them acutely and in the longer term.

Introduction

Research on parental stress relating to a child’s critical illness has focused mainly on the immediate psychological impact on parents, while their child is in the paediatric intensive care unit (PICU), when their anxiety levels are ‘elevated to near panic’ (Shudy et al., 2006). Seminal studies have shown that parents are more distressed by the impact on their parental role, than by the unfamiliar, highly technological environment (Carter and Miles, 1989), and that their primary needs at this point are for proximity to the child and regular information (Molter, 1979, Fisher, 1994). Recognition of these needs has prompted a number of interventions (Smith et al., 2007, Linton et al., 2008).

Recently a small number of studies have reported on the longer term impacts of admission on parents, showing that levels of distress are raised for months after discharge (Board and Ryan-Wenger, 2003, Rees et al., 2004). One large-scale prospective study has demonstrated that parents’ post-traumatic stress is related to their acute stress at the time of admission and their estimate of the threat to their child’s life (Balluffi et al., 2004).

A number of authors have highlighted the need for more longitudinal research in this field, for more information on fathers’ experiences and greater involvement of researchers from a variety of academic backgrounds (Board, 2004, Board and Ryan-Wenger, 2000, Noyes, 1998, Shudy et al., 2006).

The literature on post-traumatic stress disorder (American Psychiatric Association, 1994) has grown substantially since the condition was first formally recognised in 1980. Ozer et al. (2003) report, in a comprehensive meta-analysis, that immediate psychological reactions at the time of trauma are stronger predictors of post-traumatic stress than prior personal characteristics but concede that the mechanisms by which a proportion of people develop chronic symptoms remain poorly understood.

Ehlers and Clark (2000), in their cognitive model of post-traumatic stress disorder, have stressed the value of asking individuals about the ‘hotspots’ in their traumatic experience as a way to uncover key cognitions at the time, since these influence how they make sense of what has happened to them. According to this model, two features of these early reactions associated with poorer outcome are (a) a persistent sense of threat and (b) avoidance of reminders of the trauma, leading to poor integration of traumatic events into autobiographical memory.

The qualitative data reported on in this paper were collected as part of a mixed-method study. The study was cross-sectional but had a longitudinal perspective, in that data was collected both on how parents were feeling at the time of interview and on their retrospective reflections on their psychological reactions at the time of admission.

The aims of the dominant quantitative component of this study were to establish rates of psychological distress in parents, 8 months after their child’s discharge from PICU and to examine the associations between this distress and other variables (Colville et al., 2003a, Colville and Gracey, 2006).

The main aims of the nested qualitative component of the study, reported here, were to amplify on and explain the quantitative findings. Specifically it was hoped that the insights provided by the qualitative analysis of parents’ comments would help to explain the high incidence of post-traumatic stress and anxiety in this group as a whole and the relatively higher rates of distress reported by mothers. It was hypothesised that parents’ narratives of their time on PICU would be characterised by descriptions of disturbing memories paired with powerful emotional reactions and that there would be systematic differences between mothers’ and fathers’ recollections.

Section snippets

Design

In this cross-sectional mixed-method cohort study, we used a generic qualitative approach and adopted Caelli et al. (2003) criteria for establishing rigour: we made clear the theoretical positioning of the multi-disciplinary researcher team by putting forward hypotheses, and used qualitative and quantitative data to explore these assumptions.

Interviews were chosen as a means of obtaining parents’ opinions, descriptions and often hidden interpretations of their own experiences in their own

Recruitment

Of the families of the 105 children admitted in the study period, 10 could not be traced and four were excluded at a doctor’s request, leaving 91 families contacted in all. No statistically significant demographic or medical differences were found between those who took part and those who did not, in terms of medical or demographic variables.

Fifty-two parents of 34 children agreed to take part, but two interview recordings failed, which meant that the final sample eligible for analysis

Discussion

These qualitative findings complement and expand on the quantitative outcomes already reported on this sample. Parents described intense levels of stress associated with their child’s admission and retained vivid memories of their experiences, many months later, echoing previous research on mothers, years after their child’s neonatal intensive care admission (Wereszczak et al., 1997). The PICU experience was hard to process, emotionally and intellectually, because of the speed of the child’s

Conclusion

Clearly the removal of all stress from parents in this situation is an unattainable aim. The suffering and potential loss of a child will inevitably generate intense anxiety in their parents. Nevertheless, by acquiring a clearer understanding of parents’ experiences, health professionals will be better placed to make evidence based decisions about the care of families on and after PICU, which will ultimately promote the child’s physical and psychological recovery.

Acknowledgements

We are grateful to David Gracey for undertaking interviews, Jill Rolfe for transcribing them and the families for taking part in the study and sharing their experiences.

This research was funded by the Hold My Hand Appeal, St George’s Hospital Charitable Foundation.

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