Table 2

Thematic structure

Metatheme: one chance to get it right
Theme 1
Parents experiences; enduring and multiple loss
Theme 2
Parent needs: making irretrievable moments precious
Theme 3
(Lack of) care in the caring: the best care possible to the worst imaginable
Beyond distress:
Bowled over by the horror…
Horrible journey of discovery
inability to protect
Wounded emotionally
Blame, guilt, regret, grief, fear, silence
pressure (to make decisions); being driven to anger
Memories to last forever:
A lifetime of memories in a few hours
Importance of memories
Time to process
Options: changing choices over time (‘I wish…’)
Need for staff to direct as well as suggest
Casual inhumanity:
‘everything you can imagine they shouldn't do, they did’
Time (time delay), respect, competence, engagement, empathy, consistent and comprehensible treatment
Medicalising grief, concerns dismissed, discouragement of investigations, inadequate science / research, broken promises / trust
Separation and loss:
I was just lost, really lost…
Can't talk to people
Different from previous experience
Distant from staff (geographically/needs)
Parted from child
A generalised human love for each other in bad times…
It's the small things…
Giving time, care for father of the baby
Emotional engagement, caring touch, hugs, seeing the baby as a loved child
Positive caring in the care:
‘they hold a special place in our lives’
Emotionally intelligent, experienced, intuitive, humane,
Reassurance, support, advocacy, information, normality back
What could have been:
he was just perfect…
Incredible rush of love
Peace of mind / coping
Altruism/answers for us and for others
Filling the gap
someone to help you and guide you…
Managing expectations, being flexible, guidance, protection (exhibit/receive), experience
Planning for the future
Need to care for partner/baby's siblings
SB prevention/awareness
Space for bereaved parents
Continuity of care, personal connection / relationship, good communication (to parents, to fellow professionals).
Wider Impacts:
there is just too much of me missing…
Loss of capacity
to trust (self, professionals)
to manage job, family, mental health
Feeling sorry for others/responsible for their sadness
Family tragedy
Necessary knowledge:
The truth…… is hard and cold
Needing answers
Harsh facts