Background
Theoretical framework
Aim
Methods
Search procedure
Identifying virtual communities about reproduction/parenthood
Identifying threads about prenatal diagnoses of fetal anomalies
Purposeful sampling of eligible threads
Sample characteristics
Backgrounda
| N(%) |
---|---|
Not disclosed/No personal experience of congenital anomaly | 173(50) |
Termination of pregnancy following a fetal anomaly | 108(31) |
Parent/relative to child with congenital anomaly | 37(10) |
Currently pregnant with prenatal diagnosis | 28(8) |
Person with congenital anomaly | 3(1) |
Type of anomaly | n(%) |
---|---|
Chromosomal | 47(27) |
Heart defect | 35(20) |
Multiple | 31(18) |
Not disclosed | 27(15) |
Brain | 12(7) |
Kidney and urinary tract | 12(7) |
Spina bifida | 9(5) |
Club foot | 1(1) |
Congenital amputation | 1(1) |
Tumor | 1(1) |
Data analysis
Original message | Identified meaning unit | Code |
---|---|---|
Had a look at your thread and was horrified by what incredibly stupid and callous people there are. You should absolutely not bother about them. You are a fantastic person and you will get through this. Sending you strength! Hugs <3 | Had a look at your thread and was horrified by what incredibly stupid and callous people there are. You should absolutely not bother about them. | Response to critique |
You are a fantastic person and you will get through this. | Affirmational support | |
Sending you strength! Hugs <3 | Emotional support |
Results
Distribution and communication of affirmational, emotional, informational and instrumental virtual support
Support attribute | Background of postera
| MU n(%) | Illustrative quote |
---|---|---|---|
Affirmational (MU n = 807, 21.9 %) | Currently pregnant with prenatal diagnosis | 317(39.3) |
You sure haven’t had an easy time…
|
Termination of pregnancy following a fetal anomaly | 294(36.4) |
Small comfort when the worry flashes through your body, I know…
| |
Not disclosed/No personal experience of congenital anomaly | 127(15.8) |
You are strong and selfless doing this for the sake of your child!
| |
Parent/relative to child with congenital anomaly | 69(8.5) |
I can understand that it feels tough right now
| |
Emotional (MU n = 1,992, 54.0 %) | Termination of pregnancy following a fetal anomaly | 890(44.7) |
Hugs to you
|
Currently pregnant with prenatal diagnosis | 670(33.6) |
Here come lots of warm fortifying hugs for today
| |
Not disclosed/No personal experience of congenital anomaly | 303(15.2) |
I wish it was possible to send strength through the computer… <3
| |
Parent/relative to child with congenital anomaly | 128(6.4) |
*supportive hugs* and *supportive thoughts*
| |
Person with congenital anomaly | 1(0.1) |
Sure everything will be OK. Luck seems to be on your side
| |
Informational (MU n = 812, 22.0 %) | Termination of pregnancy following a fetal anomaly | 333(41.0) |
Took some photos (TAKE A CAMERA)
|
Currently pregnant with prenatal diagnosis | 225(27.7) |
There’s only a 50 % chance of a “CDH” baby reaching its first birthday
| |
Parent/relative to child with congenital anomaly | 140(17.3) |
Today they can save children born in week 22
| |
Not disclosed/No personal experience of congenital anomaly | 113(13.9) |
There are only two children’s heart centers in the country
| |
Person with congenital anomaly | 1(0.1) |
I’ve had operations on the heart defect I was born with 3
| |
Instrumental (MU n = 77, 2.1 %) | Termination of pregnancy following a fetal anomaly | 35(45.4) |
If anything crops up, don’t hesitate to get in touch.
|
Currently pregnant with prenatal diagnosis | 24(31.2) |
If you feel a need to talk to someone […] just let me know.
| |
Not disclosed/No personal experience of congenital anomaly | 10(13.0) |
So we can take a trip and have a coffee together?
| |
Parent/relative to child with congenital anomaly | 8(10.4) |
If you live close by, perhaps we can meet and talk.
|
Affirmational support
Emotional support
Informational support
Instrumental support
Distribution and described value of virtual support
Background of postera
| MU n(%) | Illustrative quote |
---|---|---|
Currently pregnant with prenatal diagnosis | 192(56.0) |
That’s why this thread I’ve created is so great, as we had decided that that I can shout and cry and feel sorry for myself here […] You are all my angels!!
|
Termination of pregnancy following a fetal anomaly | 133(38.8) |
Thanks for your support. The tears just run down my cheeks when I read everything.
|
Not disclosed/No personal experience of congenital anomaly | 16(4.6) |
When I read what you have written, I realize what strong people there are out there. It gives me strength too.
|
Parent to child with congenital anomaly | 2(0.6) |
Thanks for your kind and encouraging words!
|
It feels good that there are more people out there who have been through the same thing as me and who have moved on, who have been able to have children again and it gives me strength.
Yes, you and the thread are invaluable. Talking to a psychologist, for example, is good, I’m sure, but they nod and say everything is normal. But I would have felt that they had to say that. But when real people write that they feel the same and you can recognize yourself in what they write, it feels better.
Without you here I’d have gone nuts!! Air loads of thoughts and feelings! You feel so terrible but then you write here and then you don’t feel so bad any more.
Critique of continuation/termination of pregnancy and responses
Voiced critique
I think it’s terrible to give birth to the child after week 20, let it lie there and die because the child MAYBE won’t survive if it goes full term. What’s humane about that?
I would never have given birth to a handicapped child. MEAN!
Responses to critique
If TS’s [Thread starter] decision annoys you, then you don’t need to say anything! Everyone has different opinions, that’s just how it is, but it’s quite wrong to express them here as they hurt and don’t help TS or anyone else.