Parents’ experience of a follow-up meeting after a child's death in the Paediatric Intensive Care Unit

Summary

Objective

’To identify parents’ experience of a follow up meeting and to explore whether the conversation was adequate to meet the needs of parents for a follow-up after their child's death in the Paediatric Intensive Care Unit (PICU).

Design and setting

Qualitative method utilising semi-structured interviews with six pairs of parents 2–12 weeks after the follow-up conversation. The interviews were held in the parents’ homes at their request. Data were analysed using a qualitative, descriptive approach and thematic analysis.

Findings

Four main themes emerged: (i) the way back to the PICU; (ii) framework; (iii) relations and (iv) closure.

Conclusion

The parents expressed nervousness before the meeting, but were all pleased to have participated in these follow-up meetings. The parents found it meaningful that the follow-up meeting was interdisciplinary, since the parents could have answers to their questions both about treatment and care. It was important that the staff involved in the follow-up meeting were those who had been present through the hospitalisation and at the time of the child's death. Parents experienced the follow-up meeting as being a closure of the course in the PICU, regardless the length of the hospitalisation.

Introduction

Several studies implicate the necessity for bereavement interventions with grieving parents based on their needs for a sense of closure after losing their child in the Paediatric Intensive Care Unit (PICU) (Borgman et al., 2014, Dyregrov and Dyregrov, 2008, Endo et al., 2015, Fridh et al., 2009, Macnab et al., 2003). These studies also show a need for the parents to discuss topics such as events leading to the PICU admission and death, cause of death, treatment, autopsy and ways to help other parents in a similar situation in order to comprehend their experiences (Eggly et al., 2013, Kock et al., 2014). Parents also welcome the opportunity to provide feed-back to the staff, both criticisms and expressions of gratitude (Eggly et al., 2011, Meert et al., 2007). Furthermore, a meeting with bereaved parents may be an opportunity for the health care professionals to reflect and improve on current practice (Cook et al., 2002, Longden, 2011).

In addition, these studies reveal the need for further research in order to evaluate on the parents’ experience of the follow-up meetings. Whilst most studies are based on physicians’ perspectives and their roles in the follow-up meetings (Borasino et al., 2008, Eggly et al., 2013, Meert et al., 2014), this paper describes a study focusing on the parents’ experience and perspective. According to Macnab et al. (2003) the paediatric medical literature is inadequate on the matter of families experiencing the death of a child.

Studies have illustrated that the sudden loss of a closely related family member may lead to shorter life expectancy for the bereaved family members (Dyregrov and Dyregrov, 2008, Kock et al., 2014, Li et al., 2003). Additionally, understanding the cause of death is an important part of the grieving process. Some studies highlight that also the behaviour of the health care professionals has an impact on the grieving process for bereaved families (Kock et al., 2014, Meert et al., 2001, Oliver et al., 2001). Good care of family members in the PICU may facilitate the crisis reaction and thereby be helpful in the grieving process. Nurses’ engagement and commitment are important factors for the family's satisfaction with the care which again provides a trusting relationship between the staff and the family. This is essential for the parents’ experiences and grieving process (Fridh et al., 2009).

In the PICU involved in this study, follow-up meetings have been held for more than 20 years based on nurses’ and physicians’ professional perspectives. Providing insight and understanding of the parental perspective and experience participating in these follow-up meetings may complement and enhance the knowledge about the value and importance of this bereavement intervention. In a study concerning parental perceptions of staff support in a PICU regarding death and bereavement, Macnab et al. determine the fact that there are only few studies of the value of bereavement interventions (Macnab et al., 2003). The aim of our study is to contribute with knowledge from the parents’ perspectives and views of a bereavement intervention in form of a follow-up meeting.