Características generales de la Cadena de Tiendas TRD Caribe

Coding and Themes

Three core themes emerged from the review on what bereaved parents want from professionals after the death of their child: to be able to say goodbye, to understand why and how their child died, and to feel supported by professionals.

The codes from the quantitative and qualitative data and the main themes that emerged from them are shown in figure 5.

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Figure 5 Quantitative codes, qualitative codes and themes

Quantitative codes Themes Qualitative codes

To be able to say goodbye to their

child

To know how and why their child died Autopsy

Viewing the body

Why did my child die? Emergency services Practical Information Emotional Support Follow-up Breaking Bad News To feel supported Saying goodbye Professional Support Emotional Support Poor communication Abandoned by services Needing Information

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Narrative Synthesis of Literature

Parents want to be able to say goodbye to their child.

I just sat there, and that was good (Wisten and Zingmark, 2007)

In the reference framework parents wanted time to hold or be with their children after death to say goodbye, even if the body was mutilated; parents deeply regretted this if they were unable to do so (Finlay and Dallimore, 1991, Dent et al., 1996). These were consistent findings across many studies of all types of child death; with qualitative studies detailing parents’ desire for privacy, a peaceful space and adequate time to be able to say farewell (Ashby et al., 1991, Lemmer, 1991, Reilly et al., 2008, Meyer et al., 2006, Wisten and Zingmark, 2007, Merlevede et al., 2004, Meert et al., 2009, Calhoun, 1994, Schaap et al., 1997). When the time comes for the child’s body to be removed to the mortuary, parents want this done in a dignified manner, showing respect for the child (Ashby et al., 1991) and allowing parents to accompany them (Dent et al., 1996). In interview studies, parents have described seeing or holding their infant or child’s body as helpful and that not being able to do so increased their grief (Swanson et al., 2002, Bellali et al., 2007, Macnab et al., 2003, Wisten and Zingmark, 2007) In Bellali et al. (2007), after allowing their children’s organs to be donated, parents were not able to see their children again and this greatly increased their distress in the months

afterwards. In Merlevede et al. (2004), relatives who left the scene of the resuscitation, were described as feeling ‘torn apart’ by their decision as they could not be with their dying family member. Mothers of babies dying early in infancy have described not being allowed to hold them to say goodbye, have mementoes or any say in the funeral

arrangements, and they felt this made it more difficult for them to resolve their grief (Swanson et al., 2002).

69 However survey findings of the benefit of seeing a child’s body are less certain. In one study after perinatal death 30/30 mothers found seeing the baby helpful (Sexton and Stephen, 1991) whereas only 6/21 parents found this helpful in a study of a wider range of child deaths (Neidig and Dalgas-Pelish, 1991). Parents may choose not to see their child after death, but one-third of parents in a large qualitative study (n=38) expressed regret that they decided not to see their baby after a perinatal death (Schaap et al., 1997). However, even when warned of potential regret, a minority of neonatally bereaved parents still felt strongly that they did not want to see their baby (Skene, 1998). None of the survey studies specifically reported on parents’ experiences of holding their child.

Qualitative studies have reported that parents may still wish to see their child after a traumatic death although others may prefer to remember them unhurt (Kuhn, 2008). When parents do not see their child they often imagine the injuries to be worse than they really are (Merlevede et al., 2004).

Parents want to know how and why their child died.

I still don't know what happened to my boys. No one would or could tell me what happened…(Covington and Theut, 1993)

Many different studies of all types of child death confirmed the parental need for information about their children’s deaths identified in the reference framework (Bellali et al., 2007, Covington and Theut, 1993, McHaffie et al., 2001b, Pector, 2004, Merlevede et al., 2004, Royal College of Pathologists and Royal College of Paediatrics and Child Health, 2004, Sullivan and Monagle, 2011, Oliver et al., 2001, Dent et al., 1996, Finlay and Dallimore, 1991). Conversely, a case record review showed that only 28% of relatives sought results of forensic autopsy examination despite these not being

70 available from any other source; families may not though have been aware that they could seek these results (Teklay et al., 2005).

Both surveys and interview studies have reported that information after any type of child death may help parents make sense of the death and help with their grief (Kuhn, 2008, Wisten and Zingmark, 2007, Sterry and Bathgate, 2011, Spooren et al., 2000, Thuen, 1997, Covington and Theut, 1993). Interview studies reveal that information about the death reassures parents that children did not suffer and everything possible was done to save them. (McHaffie et al., 2001b, Merlevede et al., 2004, Wisten and Zingmark, 2007). Similarly, detailed information reassures parents that their actions were appropriate, helping to diminish some of their feelings of guilt (Meyer et al., 2006, Merlevede et al., 2004, Meert et al., 2007, Sterry and Bathgate, 2011). Conversely, other mothers have reported that detailed knowledge whilst helpful does not ameliorate all their anxiety (Covington and Theut, 1993).

In a study of parents bereaved following road traffic accidents (Spooren et al., 2000), parents completed the Inventory of Complicated Grief (ICG) (Prigerson et al 1997 in (Spooren et al., 2000)), which is a validated tool for assessing traumatic grief, as well as rating their satisfaction with services. 41/78 parents were dissatisfied with the

information received and dissatisfaction was significantly associated with a higher score for traumatic grief (p=0.03) measured by the ICG. However, dissatisfaction with the practical help provided by the emergency services at the time of death was more strongly associated with traumatic grief (p=0.008).

Parents want to know the cause of death especially for sudden unexpected deaths; the lack of explanation for SIDS or sudden cardiac deaths may result in further parental distress (Dent et al., 1996, Wisten and Zingmark, 2007). Consistent with this a survey of 892 SIDS parents found that finding the cause for death was of the greatest importance

71 for parents (Royal College of Pathologists and Royal College of Paediatrics and Child Health, 2004) and a survey of 413 perinatally bereaved mothers showed that 21% were struggling to understand why their baby died with 51% wanting further information (Covington and Theut, 1993).

A consistent finding of studies of all types of child death is that parents have requested follow-up appointments with professionals to ask for further information as at the time of the death they were too distressed to comprehend detailed answers (Wisten and Zingmark, 2007, Merlevede et al., 2004, Covington and Theut, 1993, Bright et al., 2009, Meert et al., 2007). However, parents have commented in interview studies that returning to the hospital may cause distress from traumatic memories (Macdonald et al., 2005, McHaffie et al., 2001b), and that following a neonatal death there may be an additional burden of appointments in several different departments (McHaffie et al., 2001b). Families have suggested that written information should be available as memory difficulties are common in acute grief situations (Dyregrov, 2002).

Bereaved parents have described, in interviews, their increased distress with long waits for information about why or how their child died (Wisten and Zingmark, 2007, Kuhn, 2008) and how the lack of information has led them to assume that it is being

deliberately withheld (Covington and Theut, 1993, Finlay and Dallimore, 1991) or that litigation may be their only option to obtain the answers (Finlay and Dallimore, 1991). Following violent deaths, parents spoke of their determination to obtain information from the authorities (Kuhn, 2008).

Autopsy

Autopsy is included in the theme of ‘understanding why and how their child died’ as it is a means by which the cause of death may be found and then shared with the parents. Autopsy is a legal requirement in many countries following unexpected death, although

72 parents may also consent to an autopsy for more information when it is not mandatory. Autopsy may reveal a complete cause of death, and be a source of good information, if well explained to the parents; but the death may remain unexplained after autopsy such as in SIDS cases. It is an invasive procedure that has a poor public image after scandals such as the organ retention issue at Alder Hey Hospital.

An interview study of neonatal deaths found that autopsy results may be a powerful tool in helping parents reach a sense of closure (McHaffie et al., 2001a); similar results were shown in a survey of SIDS parents where 66% (93/141) believed that mandatory autopsy had helped resolve their grief, even for the 17% (24/141) parents who had not wanted the autopsy initially (Vennemann et al., 2006). Conversely with autopsy of older children, a survey showed only 40% of parents found the results useful and 38% thought the results helped with their grief; however this survey had a low response rates so these results may not be generalizable (Sullivan and Monagle, 2011). Interview studies and surveys have detailed parents’ reasons for consenting to

autopsies: to obtain further information about neonatal deaths and future pregnancies in particular was the reason given by ‘the majority of parents’ (McHaffie et al., 2001a) and by 50% of parents in another neonatal study (Rankin et al., 2002). Bereaved parents following all types of child death wanted information from their child’s autopsy to help other families in the future (McHaffie et al., 2001a, Snowdon et al., 2004, Sullivan and Monagle, 2011). Around half of parents who declined neonatal autopsy in 2 studies did so because they had no unanswered questions and half because they do not want their baby’s body traumatised further (McHaffie et al., 2001a, Rankin et al., 2002). Parents may find the discussions around consenting to autopsy useful. This was the case for 14/16 parents after a perinatal death (Rahman and Khong 1995) but only useful for 46% of parents of older children (Sullivan and Monagle 2011).

73 Surveys and interview studies have shown that a small minority of parents, after

consenting to child autopsy subsequently regret it, this ranges from 6-8% (Sullivan and Monagle, 2011, Rankin et al., 2002, Rahman and Khong, 1995); but after refusing a neonatal autopsy some parents regret the loss of potential information, this ranges from 7% (Rankin et al., 2002) of those declining autopsy to 30% (Rahman and Khong, 1995). Thorough explanations of the autopsy process are needed, particularly if parents are going to view their children again afterwards, sanitising explanations prior to autopsy may result in more distress later (Snowdon et al., 2004).

In Dent et al, some parents struggled to understand the autopsy results despite explanations from professionals (Dent et al., 1996). Consistent with this finding other studies have shown parents not receiving autopsy results despite giving consent to the procedure; this happened in 4/13 intensive care deaths (Macnab et al., 2003). After sudden cardiac death some parents received autopsy results by post so lacked the opportunity to discuss the results with a clinician (Wisten and Zingmark, 2007) and a study of paediatric autopsy reported that only 42/52 parents had results explained to them (Sullivan and Monagle, 2011). Parents have reported not understanding

explanations of results and thus feeling that their questions remained unanswered (Covington and Theut, 1993, Sterry and Bathgate, 2011); this was the case for 8/16 mothers following neonatal autopsy (Rahman and Khong, 1995) but in a much larger survey of neonatal autopsy 101/120 parents thought the results were explained

appropriately and only 16/120 parents wanted further explanation (Rankin et al., 2002). Discussing the autopsy result may be of benefit to parents: of 23 parents who still had unresolved anger or guilt nearly 3 years after a SIDS death, 17 of these had received no results from the autopsy (Powell, 1991). 46% of SIDS parents found seeing a pathologist helpful and reassured them that they were blameless for the death; of the 18% of

74 parents who found the pathologist unhelpful the reasons stated were not actually being able to meet the pathologist, lack of information given or feeling blamed (Sterry and Bathgate, 2011).

Parents want to feel supported by professionals Supporting the parents

I spoke with the coroner because she said if there was anything that I wanted to know that she would try and find out for me …. I wanted to know about my son’s last seconds and what they did…. She went to the hospital and found out who was on duty that night and talked with them. …. She said he was alive when he got to the hospital and he had a strong heartbeat but he was brain dead and there was no way he could survive. Even though it was hard to hear these things, I really needed to know. She said there had been a nurse with my son and that she had recognised him.(Kuhn, 2008)

The quote above shows an example of good professional support for a bereaved mother: the emotional support of being available to listen to her concerns and the professional actions of finding out the information required by the parent and sharing it with her in a sensitive way such that it helped the mother in her grief.

Supporting parents involves professionals helping parents in their search to understand the death as well as giving emotional support. Often these roles are intertwined (as in the quote from Kuhn) and it is difficult to determine precisely what type of support is being given. Support at the time of death is largely emotional support but also includes providing information; later support includes both emotional support and professional actions such as maintaining contact.

75 Emotional Support

I just remember the nurses all standing around the bed with tears in their eyes. It was a tear that I knew that they were parents and they were coming to me as a parent (Kuhn, 2008)

Parents felt supported by professionals who showed they were upset when breaking bad news; conversely they were offended if professionals were cold and unemotional. Many parents felt uncared for by the hospital immediately after their child’s death often being left to arrange their own way home (Finlay and Dallimore, 1991).

Consistent with the reference framework, other studies of all child deaths report that parents appreciate staff members showing emotion (Kuhn, 2008, Calhoun, 1994, Meert et al., 2008b, Meyer et al., 2006, Pector, 2004, Dent, 2000, DiMarco et al., 2001) and mothers interviewed after a neonatal death interpreted staff who lacked emotion as being uncaring (Lemmer, 1991). Similarly other surveys reported on a lack of care shown to parents; 20% (83/413) of perinatally bereaved parents commented on a lack of sensitivity and care by their caregivers (Covington and Theut, 1993) and 37/70 parents were dissatisfied with hospital staff after road traffic accident deaths (Spooren et al., 2000).

Other studies have given further details of parents’ experiences of emotional support; doctors are valued as guiding parents through the crisis of their children’s deaths (Bright et al., 2009, Meert et al., 2009), social workers and chaplains have been important to parents after intensive care deaths (Macnab et al., 2003), police officers have been supportive with sudden deaths but their presence can be upsetting for some due to the implication that a crime may have occurred (Sterry and Bathgate, 2011, Wisten and Zingmark, 2007). Parents may clearly remember interactions with professionals at the

76 time of their children’s deaths; later these memories may bring comfort or distress for both hospital (Meert et al., 2009) and community deaths (Nordby and Nohr, 2009). Nurses often provide more emotional support to families than other health care professionals; this is particularly so after perinatal loss but also after other child deaths. In Sexton and Stephen (1991) 26/30 perinatally bereaved mothers valued a nurse talking through their feelings with them; similarly in Calhoun (1994) 12/23 mothers said they had emotional support from nurses which was very helpful however 5/23 mothers commented on a lack of openness or honesty from the nurses. Following death on paediatric intensive care all 13 families in one study reported nurses as very supportive (Macnab et al., 2003). However, following perinatal deaths some nursing staff have avoided bereaved parents which has caused offence (Pector, 2004).

Most parents wanted mementoes of their child but these were offered to less than half of families following sudden child death (Dent et al., 1996). Photographs were valued by 28/29 mothers after perinatal loss and the baby’s clothes by 26/27 (Sexton and

Stephen, 1991). Similarly following SIDS, 34/37 parents wanted a memento but 15 of these parents would have preferred to receive this 2-3 weeks after the death rather than immediately (Ahrens et al., 1997). After paediatric intensive care deaths all 13 mothers in one study rated mementoes as very helpful (Macnab et al., 2003). Parents of older children usually want all their possessions back (Oliver et al., 2001) but the process of having to sign for their child’s belongings may cause offence if not handled sensitively (Finlay and Dallimore, 1991).

Emergency Services

The police were respectful enough but having to deal with the questioning, taking pictures, raiding the bins …and emptying you of all your Child's

77 In the reference framework there were mixed findings with some but not all parents praising the police for their support (Finlay and Dallimore, 1991). In Dent et al., most parents were happy with the emergency services although 28% of parents thought the police unsympathetic and one-third of parents were not allowed to accompany their child in the ambulance.

Only four studies, all of SIDS, detailed parents’ views of the police; these were similarly mixed. In one study 48% of 109 parents thought the police were kind and helpful, but 30% felt they were unhelpful and treated parents as guilty and assumed that a crime had been committed (Sterry and Bathgate, 2011); another study commented on disproportionate police involvement (Livesey, 2005). Conversely, in Ireland, satisfaction with police services following SIDS was high with 86/100 parents finding police helpful (McDonnell et al., 1999) and 75% of 69 parents stating that police carried out the process of identification sensitively (Powell, 1991). These results are surprising given that there is a similar level of involvement by UK and Irish police in SIDS cases.

Only two other studies reported parents’ views on ambulance services. 50% of 109 SIDS parents thought ambulance staff were helpful but 21% criticised ambulance staff for seeming to panic and being ill-equipped to deal with infants (Sterry and Bathgate, 2011). 41/80 parents were dissatisfied with ambulance services following road traffic accident deaths and this was associated with increased traumatic grief reactions using the Inventory of Complicated Grief (Spooren et al., 2000).

Professional Support

I have been very lucky this time. My health visitor has been a gift from the gods. She has made herself available at any time. Previously I had a stillbirth and no-one came near me. (Dent, 2000)

78 In Finlay and Dallimore, the most helpful support for parents was on-going contact with a professional present at the time of death. In Dent et al., parents wanted more practical information about dealing with the bereavement and for professionals to remain in contact with them. As in the reference framework, bereaved parents in other studies wanted continuing contact with medical teams both after sudden deaths and those in hospital (Dent, 2000, Meert et al., 2009, Meert et al., 2007, Sterry and

Bathgate, 2011). This is particularly important after sudden deaths and suicides, as grief- stricken parents may feel unable to contact professionals themselves, suggesting contact should be offered routinely and continued for some months (Dent, 2000, Dyregrov, 2002, Wisten and Zingmark, 2007). In interview studies parents have