Table 3 Parent thematic sentences
Parents thematic sentences | FES | Sample quotes from extracted findings |
|---|---|---|
Overarching Themes | ||
1. Behaviours and actions of staff can have a memorable impact on parents | 53 % | "A detached attitude from staff was identified as being particularly unhelpful" (Dyson 1998) [32] |
"It was reported that verbal communication with staff ceased during the examination, but that body language of staff showed that something was wrong with the fetus. This silence worries women, who said that it would have been better if the staff had talked during the examination – explaining what they saw or what was puzzling them. Almost all participants thought that the examination room had been full of personnel who were communicating with each other without involving the parents in the discussion" (Trulsson 2004) [48] | ||
"It is apparent that training medical personnel in the emotional and caring aspect of ‘breaking bad news’ during routine scans needs to be re-examined" (McCreight 2008) [38] | ||
"When mothers experienced that they did not get the care they needed from the hospital staff, they felt neglected by them" (Erlandsson, Lindgren 2011) [33] | ||
"Death notification was also particularly difficult and mothers perceived professionals to be uncertain, avoidant, and tenuous" (Nordlund 2012) [39] | ||
"Parents perceiving communication positively reported far more simple statements with intensifiers, such as ‘I’m so sorry’, and non-verbal expressions of sympathy, such as personal touch and the health care professional expressing emotion" (Pullen 2012) [41] | ||
"Midwives hiding behind ‘doing and ritualizing the guidelines was unhelpful" (Dyson 1998) [32] | ||
"Regardless of the experience, the women wrote in glowing terms about the respect, kindness and professionalism of healthcare providers during and immediately after labour" (Lee 2012) [21] | ||
"Several issues caused particular distress. The woman generally attributed such issues to the hospital policy and procedure, the broader system, rather than to any inadequacy of individual health care providers" (Lee 2012) [21] | ||
"Health professionals also supported motherhood through seeing the mother and father as the parents of their child" (Radestad 2011) [41] | ||
"Mothers felt that their emotional states were disregarded when the professionals primary focus was on practical matters such as death reporting or funeral planning" (Nordlund 2012) [39] | ||
"Mothers felt ignored in the corridors, noting that health professionals often avoided making eye contact" (Nordlund 2012) [39] | ||
"Some of the mothers reported that professionals did not listen well and lacked empathy" (Nordlund 2012) [39] | ||
"Most meaningful for all parents were the physicians and nurses who took time to sit with them, look them in the eye, and be present with them in their sadness" (Kelley 2012) [37] | ||
"Where this physicians instincts or training may have led him to attempt to protect the patient from his emotional reaction, the patient instead found the reaction to be deeply human and a sign of shared grief over a terrible loss" (Kelley 2012) [37] | ||
"Fathers felt their fatherhood went unrecognized or invalidated" (Cacciatore 2012) | ||
"Asking the parents to look at the monitor as non-verbal reinforcement of verbal communication of death" (Pullen 2012) [41] | ||
"When describing what was positive with the way they were informed synonyms with honesty/clarity and empathy/intimacy were most frequently reported. In contrast, lack of eye contact, empathy and hesitations from healthcare professionals in confirming the baby’s death were described as negative experiences" (Gavensteen 2013) | ||
2. Clear, easily understandable and structured information given sensitively at appropriate times, helps parents through their experience | 45 % | "Being informed about what happens next was something all the mothers described as important and as having been insufficient after the diagnosis" (Malm 2011) [51] |
"Parents refused to see their babies because they feared the baby would be deformed or monstrous. Their fears were not spoken out loud so were not countered by information from healthcare workers" (Malacrida 1997) [50] | ||
"Parents appreciated a sensitive description of how the baby might look" (Dyson 1998) [32] | ||
"Initially reluctant to see their babies because they knew they would not look normal" (Lee 2012) [21] | ||
"Sometimes it was difficult for the fathers to understand the information given to them, especially if the staff used professional terms" (Samuelsson 2001) [47] | ||
"When the baby was born the women experienced total silence. For a few this was expected, but for most it came as a shock" (Trulsson 2004) [48] | ||
"Most parents thought that their child should be delivered by caesarean section. They needed information, advice and support every step of the way for a normal delivery" (Saflund 2004) [46] | ||
"Waiting without knowing for what or for how long" (Malm 2011) [51] | ||
3. Parents want privacy not abandonment | 30 % | "The intense grief mothers were already suffering was exacerbated by hearing the cries of other newborns in the ward and seeing pregnant women" (Norlund 2012) |
"Several mothers reported that hearing noises of the bustling activity and other births around them added to their suffering" (Kelley 2012) [37] | ||
"Parents who reported negative communication reported the healthcare professional leaving the room immediately after diagnosis. Positively reported when healthcare professionals stayed with them for a while before leaving" (Pullen 2012) [41] | ||
4. Research and multiprofessional training is important for all staff to improve standards of bereavement care | 25 % | "Hospital staff must be better trained in the significance of the loss of a baby and in how to help bereaved mothers" (Conry 2008) [31] |
"Parents feel that more funding and research focus should be directed at preventing stillbirth" (Wildsmith 2008) [55] | ||
"Noticed a significant gap in knowledge and comfort level with perinatal loss and bereavement by health care professionals outside the labour and delivery programme" (Forhan 2010) [54] | ||
"Many parents suggested healthcare providers be given special training in communicating after a stillbirth" (Flenady 2010) [53] | ||
5. Parents wish for increased awareness and acknowledgement of stillbirth | 20 % | "Society at large does not understand the profundity and significance of the loss of a baby" (Conry 2008) [31] |
"Antenatal classes should include, as part of their syllabus, a discussion on the loss of a baby, what parents should do in such circumstances and the grief process" (Conry 2008) [31] | ||
"Parents struggle with the silence and taboo that surrounds stillbirth" (Kelley 2012) [37] | ||
"Much of the isolation is caused by the awkwardness and discomfort felt by others " (Kelley 2012) [37] | ||
"Lack of understanding or support from family and friends" (Kelley 2012) [37] | ||
"Stillborn child is real and will always be remembered as part of their family" (Kelley 2012) [37] | ||
"Identity is not recognized by others" (Kelley 2012) [37] | ||
6. Fathers may have different needs to mothers; they want to be involved in decision making and often focus on practical tasks | 18 % | "Fathers recommended that the staff should not forget the fathers, even though, for obvious reasons all the attention is focused on the child in the search for signs of life. Fathers also recommended that staff should break the frightening silence before and in connection with the revelation of the death of the baby, should not use medico-technical terms, and should speak with both parents at the time. They should acknowledge the expression of grief and give a respectful response" (Samuelsson 2001) [47] |
"The father has a special need for information and participation before, during and after delivery of a stillborn child" (Samuelsson 2001) [47] | ||
"Frustration and helplessness may well be inevitable, since the father cannot shield his partner from pain" (Samuelsson 2001) [47] | ||
"Fathers often kept their emotions under control for fear of upsetting the mother" (Kavanaugh 2005) [36] | ||
"Mothers wanted fathers to express their emotions" (Kavanaugh 2005) [36] | ||
"Fathers were unsure of how to support the mother" (Kavanaugh 2005) [36] | ||
7. Continuity of care and carer is important to parents | 15 % | "All women said that it would have given them a great sense of security if they had met the same caregivers at induction of labour as those on the day the stillbirth was diagnosed" (Trulsson 2004) [48] |
"They might not meet the physician again due to routine care" (Erlandsson 2011) [34] | ||
"Negative lack of continuity of care versus positive presence of continuity of care" (Pullen 2012) [41] | ||
8. Parents with a baby who died in-utero may feel that their care is not appropriately prioritised by staff | 5 % | "Some mothers waited extended periods of time for a physician to confirm the baby’s death, and others felt that they did not receive appropriate medical care from professionals because their baby was dead" (Nordlund 2012) [39] |
"Women thought they were not given priority or that they were not considered important once their baby was dead. They felt the information they received was insufficient, they had to change room several times, they saw several different doctors, and several midwives were involved in their delivery" (Trulsson 2004) [48] | ||
Diagnosis | ||
9. To be involved in decision making parents appreciate being given options and the time to consider them | 20 % | "Lack of information is perceived to be an obstacle to the mothers participation" (Malm 2011) [51] |
"They were left with little time for preparation or discussion" (Malacrida 1997) [50] | ||
"The physicians, while informing the mothers about the alternatives, tried to make them responsible for their own birth process" (Erlandsson 2011) [34] | ||
"Mothers should be acknowledged and allowed to take part in decision making" (Erlandsson 2011) [34] | ||
10. Parents have a range of emotions and reactions because stillbirth is a life changing event | 18 % | "Shock, a feeling of being paralysed, speechlessness, a lack of feeling, escape, and denial. The situation was nightmarish and indescribable, and the fathers found it difficult to comprehend what had happened" (Samuelsson 2001) [47] |
"The women described the time immediately after they learned their baby was dead as unreal and numbing. They were in turmoil with feelings of anger and sorrow. They had difficulty comprehending what had happened and what it all meant" (Trulsson 2004) [48] | ||
"Failure by medical staff to convey reassurance, they also overlook, and so fail to acknowledge, emotional aspects of the loss" (McCreight 2008) [38] | ||
11. Staff should support parents to express their concerns | 13 % | "Parents describe how their complaints and symptoms were not taken seriously by healthcare professionals" (Malacrida 1997) [50] |
"Entertained some hope on arrival in the maternity ward" (Samuelsson 2001) [47] | ||
"A fear that a dead baby would be the cause of their partners falling sick was obvious for some" (Samuelsson 2001) [47] | ||
"Almost all women had a premonition that something was wrong with their baby before they contacted the hospital, including symptoms such as less or absent fetal movement, and a feeling of heaviness in the abdomen" (Trulsson 2004) [48] | ||
"Women who reported they had difficulty communicating their worry did not want to be viewed as troublesome or unnecessarily worried" (Trulsson 2004) [48] | ||
"Many suspected something was wrong with their unborn baby prior to diagnosis. Most frequently they had reduced or no fetal movements" (Gavensteen 2013) | ||
Birth | ||
12. Spending time and making memories with their baby should be an option that is supported and offered more than once | 53 % | "Parents received the general message that you should say goodbye, but there are strict limits on where you can do it and how long it should take" (Malacrida 1997) [50] |
"Time in which the baby’s identity as an individual and a human being was defined" (Lee 2012) [21] | ||
"Identifying the baby as part of the family" (Lee 2012) [21] | ||
"She didn’t realize that she could hold her baby, no-one said that it was OK to do" (Kerslake 2012) [58] | ||
"Striking a balance between not pressing some women too hard and gently leading other women who need more support to cope with such contact is indeed a challenge" (Radestad 2001) [42] | ||
"Mothers of stillborn babies felt more natural, good, comfortable and less frightened if the staff supported assumptive bonding by simply offering the baby to the mother" (Erlandsson 2013) [49] | ||
13. Support and Information from staff may help parents who feel emotionally unprepared for a vaginal birth | 23 % | "Waiting for the induction was difficult for the women" (Trulsson 2004) [48] |
"Being offered delivery options or having explanation of why the options were limited was positively reported" (Pullen 2012) [41] | ||
"Women commented that they did not expect to have to go through labour in the normal way" (Dyson 1998) [32] | ||
"(Vaginal birth) Made the baby ‘more real’" (Lee 2012) [21] | ||
"Pleased in retrospect (re. vaginal birth)" (Lee 2012) [21] | ||
"They all believed that the natural procedure conveyed more dignity" (Samuelsson 2001) [47] | ||
"Frustration and helplessness may well be inevitable, since the father cannot shield his partner from pain" (Samuelsson 2001) [47] | ||
"They all immediately perceived the plan as appalling they saw no meaning in giving birth to a dead baby" (Trulsson 2004) [48] | ||
"Once the idea of giving birth normally had taken hold, women accepted it, and their focus shifted to going through childbirth" (Trulsson 2004) [48] | ||
"Once accomplished giving birth…they felt fortified by this event" (Trulsson 2004) [48] | ||
"Going through labour seemed a ‘sick way of hurting her’" (Kerslake 2012) [58] | ||
"Most parents thought that their child should be delivered be caesarean section. They needed information, advice and support every step of the way for a normal delivery" (Saflund 2004) [46] | ||
14. Pain relief options should be fully discussed with parents | 8 % | "Mothers who were heavily sedated during their labour had profound regrets at the lost opportunity to be with their baby" (Malacrida 1997) [50] |
Post-Mortem | ||
15. Parents want improved training so that staff can provide tailored discussions and written information to help them make informed decisions about Post-Mortem and funeral arrangements | 20 % | "The option of limited PM was not discussed with parents who refused a full PM" (Yee Khong 1997) |
"Thought that they had not been counselled about the advantages of PM, even though many had additional counselling" (Yee Khong 1997) | ||
"It seemed particularly important that the opportunity of time was given for discussion and questions, and parents welcomed discussions specific to their situation, such as being told that PM might be useful in their circumstances" (Breeze 2012) [52] | ||
"Parents who needed less knowledge declined PM…if clinicians believed that such parents would benefit from information gained from a PM, then counselling needs to be more specifically targeted to address underlying attitudes" (Breeze 2012) [52] | ||
"All parents agreed written information about an autopsy, as well as that given verbally, was important" (Flenady 2010) [53] | ||
16. There are many factors which influence parents decision whether to have a Post-Mortem | 20 % | "Professional advise affected parents decisions to have an autopsy" (Heazell 2012) [25] |
"Parents frequently depend on others for decision making, either involving family and friends to help interpret information or placing responsibility on healthcare professionals to make the decision on their behalf" (Flenady 2010) [53] | ||
17. Parents may regret certain decisions made regarding Post-Mortem and funeral arrangements | 10 % | "Many parents expressed regret and guilt over leaving their children's bodies for the hospitals to dispose of and for deciding against a funeral" (Malacrida 1997) [50] |
"Parents who did not receive a death certificate expressed regret. The legal documentation legitimised their loss" (Malacrida 1997) [50] | ||
"All parents who did not have an autopsy expressed some regret or doubt about their decisions. No parent who had an autopsy expressed these feelings" (Flenady 2010) [53] | ||
"Where an autopsy was performed, none of these women wished that it had not been carried out" (Gavensteen 2013) | ||
18. Long delays and inconclusive results can cause distress to parents | 5 % | "A number of parents awaiting post-mortem results were very frustrated with the delay in receiving the results" (Kavanaugh 2005) [36] |
"Parents who experienced stillbirth wanted to understand the cause of their child's death and found it frustrating when no answers could be given" (Kelley 2012) [37] | ||
Follow-up and Support | ||
19. Parents would appreciate a healthcare system ready to provide emotional support following birth and discharge from hospital | 50 % | "Parents perceived lack of contact as an indicator that they should get on with recovery quickly and quietly" (Malacrida 1997) [50] |
"These women experience stillbirth not as a medical problem or temporary interruption in their reproductive lives, but as the birth and death of a baby" (Lee 2012) [21] | ||
"Fathers looked on themselves as a buffer between the world outside and their partner, and tried to spare her by taking care of practical matters themselves" (Samuelsson 2001) [47] | ||
"Hospitals should consider employing or contracting grief experts to help them deal with bereaved mothers" (Conry 2008) [31] | ||
"Feelings that caregivers had abandoned them when staff did not offer their services in bereavement" (Saflund 2004) [46] | ||
"Being warm and empathetic not mechanical and cursory" (Saflund 2004) [46] | ||
"Many of the parents comments focused on well-meaning but hurtful comments from clinicians who meant to be supportive but simply did not know what to say or do to offer comfort after a stillbirth…the most common and most hurtful comments were reassurances that they would have another baby" (Kelley 2012) [37] | ||
"There is no substitute for a dead child" (Kelley 2012) [37] | ||
20. Parents should be supplied with information about what to expect post-natally | 30 % | "Women felt that they should have been prepared for the post-partum symptoms" (Malacrida 1997) [50] |
"Many parents did not realize that they were entitled to maternity leave or pay" (Malacrida 1997) [50] | ||
"Different needs and reactions could sometimes cause misunderstandings (between mothers and fathers)" (Samuelsson 2001) [47] | ||
"Fathers found that it was usually more difficult for men to talk about grief and feelings that it was for women" (Samuelsson 2001) [47] | ||
21. A debriefing and follow-up appointment can help resolve uncertainty | 28 % | "Parents often blame their actions for the stillbirth and feel guilty. Parents need to be reassured that they did not cause the stillbirth" (Malacrida 1997) [50] |
"To meet the physician and midwife involved after the stillbirth and have the opportunity to talk about the event was beneficial for the grieving process" (Saflund 2004) [46] | ||
"Offer of special antenatal care for the next pregnancy eased their despair" (Saflund 2004) [46] | ||
"Option to meet the same caregivers in the next pregnancy increased the parents sense of security" (Saflund 2004) [46] | ||
22. Support groups are helpful for many parents | 10 % | "Support groups, or talking with other bereaved parents, was reported in being the most helpful thing in dealing with the death of their child" (Cacciatore 2007) [66] |
"Mothers were particularly helped by feeling that they were not alone in their grief, and that someone else could understand the experience" (Cacciatore, Bushfield 2007) [29] | ||
23. Clear care pathways are required at the interface between primary and secondary care | 5 % | "Hospitals should have a more structured procedure in place for dealing with bereaved mothers" (Conry 2008) [31] |