Elsevier

Resuscitation

Volume 74, Issue 1, July 2007, Pages 68-74
Resuscitation

Clinical paper
Supportive needs of parents confronted with sudden cardiac death—A qualitative study

https://doi.org/10.1016/j.resuscitation.2006.11.014Get rights and content

Summary

The death of a close family member is one of life's greatest tragedies. When death is sudden and unexpected, there is an increased risk of posttraumatic reactions and complicated mourning. Care of the bereaved is still often overlooked in medical training and clinical practise. The aim of this study was to elucidate the perceived support and the needs of bereaved parents confronted with sudden cardiac death (SCD) in a young son or daughter. Data were derived from a qualitative contents analysis of tape-recorded, in-depth interviews with bereaved parents confronted with SCD 5–12 years post-loss. The 20 deceased individuals were part of the Swedish forensic SCD cohort of 15–35 year olds from 1992 to 1999. One third of the parents had had no contact with the emergency department (ED), one third had been disappointed after meeting care-givers at the ED who did not act with sensitivity and consistency, while one third were more or less satisfied with the handling at the ED. A majority of the parents experienced a lack of follow-up care; they had been left mainly to themselves to find information and support. Four factors were identified as being particularly important for the parents: evidence, reconstruction, explanation and sensitivity. There is a need of better routines to help the suddenly bereaved. A model of the major needs and a plan for the support needed are proposed.

Introduction

Sudden and unexpected death of a loved one is an important cause of posttraumatic stress disorder in the community.1 Previous studies have demonstrated that the suddenly bereaved are at an increased risk for illness and death and the opportunities for preventive medicine in this field should be great.2, 3, 4, 5, 6 Studies from emergency departments (EDs) show that the approach to the bereaved in the acute situation and the manner in which the tragedy is told is of great importance for the mourning reactions.2, 3, 4, 7 In a previous interview study by one of the authors (AW) concerning signs and symptoms preceding SCD,8 the next-of-kin often commented on their contact with the emergency medical services, police or forensic authorities and seemed to have long-lasting impressions (positive or negative) from these contacts. This evoked our interest for the survivors and inspired us to start this study. We believe that their experiences can be of general interest and help to expand our knowledge about the handling of sudden bereavement. Sudden cardiac death (SCD) in the young is a rare event with an incidence of 1/100,000 per year,9 but shocking to the survivors as it strikes apparently healthy young men and women. It is defined as a witnessed, natural, unexpected death from cardiac causes occurring within 1 h after onset of symptoms in a previously healthy person, or an unwitnessed death of a person thought to be well within 24 h of being found dead.10

In a recent prospective study from an ED in Belgium of sudden death from natural causes, accidents or suicide (mean age of the deceased 44 years), relatives were interviewed 2 months after the loss.11 Complaints most frequently reported concerned a lack of information and being left with unanswered questions. Feelings frequently expressed were distress, sleeping problems and disbelief. Despite several studies concerning sudden death, especially in infancy and childhood,12, 13, 14, 15, 16 there is a lack of outcome data on the needs of bereaved parents. To elucidate such a topic a qualitative approach is more appropriate compared to a quantitative method as it offers better opportunities to explore and describe the complex experience of a sudden loss. The aim of this study was to elucidate perceived support and the needs of bereaved parents confronted with SCD.

Section snippets

Participants

The parents of 20 deceased individuals were invited to participate in the study. Selection criteria were: (a) the 128 responders in a former interview study8 concerning a forensic SCD cohort of 15-35 year olds from 1992 to 1999 including 132 men and 49 women,9 (b) similar representation from both urban and rural parts of Sweden, (c) gender relation (73% men, 27% women) and (d) age distribution among the deceased as in the original SCD cohort.

Data collection and analysis

The participants were invited to the study by a

Results

Twenty-eight parents of 20 deceased individuals participated in the study. The interviews were conducted in 2004–2005 with two parents (n = 9) or one parent (n = 11). One participant had two interviews because of loss of two children. The interviews took place 5–12 years post-loss (mean 8 years).

Discussion

Despite several studies on the situation for traumatically bereaved parents, this is, to our knowledge, the first investigation on a national basis of the needs of parents confronted with SCD. According to the British pathologist Davies, “Unexpected death in fit young people is distressing, but if the death is explicable the family may be able to begin the process of psychological adjustment”.20 This study confirmed that understanding is a major need of the bereaved. We also found that many

Conflict of interest

There are no conflicts of interest.

Acknowledgements

This study was supported by a grant from the Norrbotten County Council. The authors wish to express their gratitude to the parents for their cooperation and support.

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    A Spanish translated version of the summary of this article appears as Appendix in the final online version at 10.1016/j.resuscitation.2006.11.014.

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