Background
Aim
Methods
Results
n | % | ||
---|---|---|---|
Age (n = 36) |
mean 35.64 (SD 6.1.88)
| ||
20–29 | 7 |
19%
| |
30–39 | 19 |
51%
| |
40–49 | 10 |
27%
| |
Number of children (n = 35) | |||
0 | 1 |
3%
| |
1 | 13 |
37%
| |
2 | 14 |
40%
| |
3 | 5 |
14%
| |
4 | 2 |
6%
| |
Primary impairment (n = 37) | |||
Deaf / hard of hearing | 2 |
5%
| |
Blind / visual impairment | 7 |
19%
| |
Physical or mobility impairment | 19 |
51%
| |
On-going health issue that affects daily life | 6 |
16%
| |
Mental health or emotional issue | 3 |
8%
| |
Antenatal care
| |||
What kind of antenatal care did you receive? (n = 37) | |||
Community midwife only | 6 |
16%
| |
Community midwife and GP | 3 |
8%
| |
Community midwife, GP, and obstetrician | 22 |
60%
| |
Other (specialist team or combination) | 6 |
16%
| |
Birth
| |||
Place of birth (n = 36) | |||
Home | 2 |
5.5%
| |
Stand-alone midwifery-led unit | 3 |
8%
| |
Alongside midwifery-led unit | 1 |
3%
| |
Obstetric unit | 28 |
78%
| |
Theatre | 2 |
5.5%
| |
How long ago did you last give birth (in years)? (n = 36) | |||
0–2 | 21 |
58%
| |
3–5 | 6 |
17%
| |
6–10 | 7 |
19%
| |
> 10 | 2 |
5%
| |
Which country were you in when you gave birth? (n = 36) | |||
England | 20 |
55%
| |
Scotland | 2 |
6%
| |
United Kingdom | 12 |
33%
| |
Ireland | 2 |
6%
| |
Postnatal care
| |||
What kind of postnatal care did you receive? (n = 37) | |||
Care in hospital | 22 |
60%
| |
Home visit – midwife | 27 |
73%
| |
Home visit – maternity support worker | 8 |
22%
| |
Home visit – Health worker | 20 |
54%
| |
Other (day care, mental health team) | 3 |
8%
|
The maternity care received
Very Dissatisfied
|
Dissatisfied
|
Neither
|
Satisfied
|
Very Satisfied
| |
---|---|---|---|---|---|
Satisfaction with support received | |||||
Midwife (n = 35) |
9%
|
14%
|
6%
|
34%
|
37%
|
General Practitioner (n = 35) |
6%
|
11%
|
26%
|
31%
|
26%
|
Obstetrician (n = 32) |
0
|
19%
|
22%
|
28%
|
31%
|
Maternity Support Worker (n = 20) |
5%
|
10%
|
55%
|
15%
|
15%
|
Health Visitor (n = 34) |
6%
|
18%
|
21%
|
32%
|
23%
|
Satisfaction with childbirth experience | |||||
Information about services available (n = 36) |
16%
|
14%
|
11%
|
43%
|
16%
|
Appropriateness of information for you (n = 37) |
5%
|
40.5%
|
13.5%
|
24%
|
16%
|
Extent services were tailored to your needs (n = 37) |
13.5%
|
35%
|
19%
|
19%
|
13.5%
|
Reasonable adjustments for you needs (n = 37) |
13.5%
|
27%
|
27%
|
13.5%
|
18.9%
|
Signposting to other services/local resources(n = 36) |
22%
|
36%
|
17%
|
19%
|
6%
|
Extent to which your individuality/preferences were respected (n = 37) |
30%
|
27%
|
11%
|
24%
|
8%
|
Overall understanding that service providers showed of your specific situation (n = 37) |
30%
|
27%
|
13%
|
19%
|
11%
|
Extent to which your privacy was protected (n = 37) |
3%
|
19%
|
24%
|
35%
|
19%
|
No one understood my disability. No-one knew how to help or who to send me to for support. (Participant 14 with physical impairment and long-term health condition)
Service providers had no understanding of specific needs and are only equipped for the mainstream. (Participant 9 with visual impairment)
My community midwife was amazing as was my GP. The consultant was unfamiliar with my disability and its implications. The midwife on day of delivery was beyond useless deciding she knew better than specialist of my disability. Anaesthetist was oblivious of my disability and failed to read the notes from my specialist. The labour ward were unaware I was disabled prior to arrival for induction, it took 36 hours for them to get me a toilet frame and told me it was ok because there was 1 grab rail. The registrar decided what was best for me and baby without even considering my disability and its implications. The post labour ward did not provide sufficient space for wheelchair or safe use of crutches. They had a perch stool rather than shower stool which I slipped off the moment it got wet and soapy. Postnatal ward could not meet my physical need so said I should go home. Postnatal were infuriating, they wouldn't take needles out of my hands until I had walked to the toilet, I could not walk without crutches and could not walk on crutches with needles in my hands. Anaesthetist did not listen to what I had to say or to my husband or mother who were there to advocate for me when I was unable. (Participant 19 with physical impairment)
In the hospital I had other midwives. One of them was very dismissive of my PGP. I also found that the obstetrician's team didn't have a clue about PGP. I asked them at the beginning as I had a previous back injury and they said it wouldn't cause a problem. They still didn't acknowledge it even when I was on crutches! (Participant 3 with physical impairment)
Midwife and obstetrician couldn't have been better. OT was completely useless. (Participant 1 with a physical impairment)
I loved my community midwife but she was the only one who wanted to know how I was feeling about things or if I needed explanations. Everyone else made assumptions, talked about guidelines or looked at monitors. (Participant 3 with physical impairment)
The issues were continuity of care. For "my" midwife who knew my history she was great. When she went off work and I saw others, they appeared to neither know nor care. (Participant 21 with a physical impairment)
Midwife was fantastic. Due to my disability she decided to make herself fully available to me, I saw only her, didn't have to explain my impairment repeatedly to different people. GP was generally useless, had to be reminded by me what each appointment with him was actually for, kept forgetting to do various tests. HV [Health Visitor] was fine, very 'nosy'! (Participant 33 with visual impairment)
My Disability is unseen and was not recognised by midwives when in labour. I was put under tremendous pressure to give birth naturally when I had already planned a c section. My baby was breech, I had a dislocated hip and was scared my pelvis would literally snap. This was ignored when I went in to spontaneous labour 3 weeks early. C section was safest option for both of us but midwives know best and were pushing so hard for a natural delivery. (Participant 23 with a physical impairment)
The midwives were fine but I told the obstetrician I didn't want to give birth on the delivery suite and they asked me to physically demonstrate I could get into certain positions that they considered necessary for giving birth. I found that quite insulting. It also undermined my confidence in my body...
My midwife antenatally and postnatally was great in community, but the midwives in hospital made me feel like they did not have time for my questions, they told me what hospital guidelines were but I didn't feel like they took into account what I wanted. They spent more time with monitors than actually supporting me. The health visitor dumped loads of leaflets that were supposed to answer my questions but they didn't. If I wanted support or my baby weighed I had to go to clinics but they didn't usually have a health visitor, just a nursery nurse who didn't answer my questions. (Participant 3 with a physical impairment)
Dignity and respect
I feel that my disability was largely ignored. I cope well but continuity of care could have been so much better last time. I had to keep going over the same things to different midwives last time. This time I have just one midwife and my consultant. They know me really well and it's so much better. (Participant 1 with physical impairment)
n | % | |
---|---|---|
Do you think that your disability, impairment or health issue led to people treating you differently (n = 37) | ||
Yes | 17 |
46%
|
No | 16 |
43%
|
Don’t Know | 4 |
11%
|
Do you feel that your disability, impairment or health issue automatically placed you at high risk (n = 37) | ||
Yes | 11 |
30%
|
No | 21 |
57%
|
Don’t Know / Other | 5 |
13%
|
Do you think that reasonable adjustments or accommodations were made for you (n = 36) | ||
Yes | 7 |
19%
|
No | 24 |
67%
|
Don’t Know / Other | 5 |
14%
|
Were you told that you were more likely to meet the same health care provider at each of your appointments because of your disability, impairment or health issue (n = 37) | ||
Yes | 4 |
11%
|
No | 30 |
81%
|
Don’t Know / Other | 3 |
8%
|
Do you feel that communication was good throughout your experience (n = 37) | ||
Yes | 11 |
30%
|
No | 19 |
51%
|
Don’t Know / Other | 7 |
19%
|
Do you feel that you experienced less favourable treatment because of your disability (n = 37) | ||
Yes | 10 |
27%
|
No | 19 |
51%
|
Don’t Know | 8 |
22%
|
Do you feel that health care providers had appropriate attitudes to disability (n = 36) | ||
Yes | 9 |
25%
|
No | 20 |
56%
|
Don’t Know | 7 |
19%
|
Only one person [treated me differently]: lady giving me epidural though I didn't understand her, and I was answering different questions as a result. In fact I do lip read, but during the procedure I couldn't lip read. She was frustrated and shouted at me. The midwife and my husband had to explain to her that I was hard of hearing. She calmed down... A little bit. (Participant 6 who is hard of hearing)
I didn't feel like I was treated any different most of the time which is good. (Participant 27 with visual impairment)
I say yes [I was treated differently] in a positive way as everything was done to make my pregnancy and delivery go as smoothly as possible. (Participant 8 with physical impairment)
Yes while they do [treat me differently] they often don't know what to offer in support or even operate from charitable model which can be ostracising at times. (Participant 9 with visual impairment)
They should have treated me differently - to allow for my situation but didn't appear to. (Participant 21 with physical impairment)
At times it is right to be treated different. My disability is unseen and even when I signpost educate and explain, my needs are ignored. (Participant 15 with physical impairment)
People did not make the effort to look into my face when speaking which is what I need to fully see what they are saying. (Participant 2 who is hard of hearing)
NHS [National Health Service; UK] letters such as scan aps all inaccessible. (Participant 5 with visual impairment)
My community midwife was really on top of everything and even slotted in extra visits when I went past my due date to give me extra sweeps. She was fab. No one else really asked what I wanted or presented options that weren't in guidelines. (Participant 3 with physical impairment)
… midwife argued my case for a homebirth due to disability, familiarity etc, some weren't [providing reasonable adjustments] i.e. not being allowed to move in hospital. (Participant 34 with visual impairment)
Allowed into birthing pool even though midwife believed it would slow labour down, but I knew if I could get off my knees it would help. So they felt they were humouring me but they listened to me. (Participant 25 with physical impairment)
I had my own room on postnatal so my husband could stay but we'd had to travel a long way from home to get the appropriate care so this was a minor consolation. (Participant 36 with physical impairment)
after giving birth I found it very difficult to stand and walk due to my disability I would not be able to do it on my own, the care I got in hospital was amazing they let my partner stay with me over night and we were put in a room with a double bed and en-suite so I would have everything I needed near me without any difficulty I could not have been any happier with the care I received (Participant 30 with physical impairment)
None [no reasonable adjustments were provided]. I had to remain in bed because my wheelchair couldn't fit in the room. Totally removed my independence. (Participant 30 with physical impairment)
Postnatal should have given me a bed with wheelchair access. I should have had immediate access to toilet frame and bath or shower stool. (Participant 19 with physical impairment)
If I were not disabled none of these things would have been an issue. I feel not meeting those needs means I was treated with less favour due to my disability. (Participant 19 with physical impairment)
Participants were asked how well they thought that their rights and their dignity were respected during pregnancy, labour and birth and the postnatal period. More than a quarter of women felt that their rights were either poorly or very poorly respected (Fig. 1: How well were your rights respected). Several participants described their choices over care being limited, that they were not listened to and that their suggested forms of support were not available. When analysing the text, it is noteworthy that the term ‘allowed’ is frequently used, suggesting a power differential where the service providers are ultimately making decisions, allowing or disallowing women’s choices.I was told I couldn't have a water birth in case I couldn't get out of the water in a hurry despite demonstrating at 36 weeks I could do it unaided. This made me really cross as what would they do if someone collapsed in the pool anyway. (Participant 36 with physical impairment)
not allowed birthing ball, not allowed to walk around etc (Participant 34 with visual impairment)
I wasn't allowed to go to low risk centre despite my disability not affecting my capacity to give birth. Problems in pregnancy weren't addressed i saw a specialist but too late then needed my care transferring urgently but this took over a week introducing another significant delay and has left me with long term problems (daughter is fine). Because my problems were related to my disability I felt they weren't addressed with the same sense of urgency as with pregnancy related problems. (Participant 36 with physical impairment)
They would not allow my carer to stay overnight (Participant 32 with physical impairment)
I felt that staff were annoyed by my requests, and that they behaved as if my physical limitations were an inconvenience. (Participant 32 with physical impairment)
I was treated as though I was being dramatic. The communication was poor. All of my options if there were any were not explained. (Participant 17 with physical impairment)
I find being in a wheelchair means I am regularly not listened to. My husband or mum are asked questions instead of me. When the professional doesn't like what I have to say they looked to my mum or husband to put me in my place (at least that is how it felt). (Participant 19 with physical impairment)
I was told I was a health and safety risk, people didn't speak directly to me, felt smothered. (Participant 34 with visual impairment)
Improving the experience
Listen to what women tell you about what they want and ask them if they can do things, don't request them to. Don't tell them what the policies are without explaining how you can adapt them or why they are recommended in that way. (Participant 3 with physical impairment)
Listen to the individual. I know my needs and limitations better than anyone else (Participant 34 with visual impairment)
Ask on first visit what supports are required an put a plan in place to meet needs that is on file and reviewed and updated regularly which will be available to all health care professionals at the front of file. This will ensure that people with a disability are not constantly explaining their needs. Staff also need to be trained in equality and a rights based model to disability. (Participant 9 with visual impairment)
Remember every mum is different whether disabled or not. (Participant 35 with visual impairment)
Each woman is different as is each baby. If a woman says she's in pain she invariably is. Just because the general advice following a section is to be as mobile as possible that doesn't mean it is possible for everyone and just because some women feel very little pain post section doesn't mean that those who do suffer are weak or less deserving of your support. Please tailor your care accordingly and listen to what you are being told (Participant 16 with physical impairment)
Research medical conditions before you try to treat. If you are told something about the individuals needs/condition, make a note of it and ensure all are aware. Do not say you know what someone feels or needs unless you have been in the exact same position as them. (Participant 19 with physical impairment)
If a patient has a syndrome please have a quick google or look at the charity website associated with the condition. In 2 minutes you'll be able to see the main issues associated with the condition, which aren't always what you would expect. Patients know you are unlikely to be an expert in their condition, but they do expect you to know what it is. (Participant 24 with physical impairment)
They need to have more detailed understanding of the variety of disabilities or even have some equality champions who can be called upon to liaise with mum (Participant 30 with physical impairment)
Put yourself in my shoes and figure out how to help rather than follow the standard path. Make an effort to understand how my disability affects me - I'm not asking for extra assistance to be awkward but to try and create a circumstance I can cope with. (Participant 37 with long-term medical condition)
Think 'can do' rather than can't! (Participant 8 with physical impairment)
I think if the mother is experiencing any kind of difficulty they should automatically be offered extra midwife appointments and more emotional support. (Participant 13 with physical impairment)
To allow women to labour in their own time and accept that refusing drugs is not about being stoic but more about accepting sensitivities to chemicals. (Participant 25 with physical impairment)