1. Experiences of disabled women with pregnancy, childbirth and early parenting services: implications for occupational therapy.
Bethan Collins, Jenny Hall, Jilly Ireland and Vanora Hundley
The University of Liverpool and Bournemouth University

2. Aim for this session
Present the main findings of the study and discuss their implications for occupational therapy practice.

3. Research Aim
Describe the experiences of women with physical or sensory disability or long- term health conditions throughout the ‘pregnancy continuum’ and their interaction with care providers.
Specific focus on their human rights and dignity

4. Background
Birthrights (2013) study of human rights and dignity found that disabled women had significantly less positive experiences than women who did not disclose a disability.
A range of other reports have also reported less positive outcomes for disabled women and also that women feel that staff do not have appropriate attitudes to or awareness of disability (e.g. Malouf et al 2014; Lipson & Rogers 2000; Sumilo et al 2012; Walsh-Gallagher, Sinclair & McConkey 2012).

5. The methods Phase 1: Online survey
On-line survey specifically developed for the study.
Recruitment through existing on-line communities for disabled people.
Questions about experience during pregnancy, childbirth and early parenting.
Phase 2: Qualitative interviews
Semi-structured phone or skype interviews
Recruitment through phase one participants.
Sought more detail and description of experiences.

6. Population Challenge is that there is no clearly defined population..
Focus on women with physical or sensory disability or long-term medical conditions.
Recruited through existing networks of disabled parents, through social media using midwifery and disability networks.

7. Satisfaction with care Being listened to, treated as an individual
Key findings
Satisfaction with care
Choice
Being listened to, treated as an individual
Continuity of carer
Implications of the findings for occupational therapy

8. Satisfaction with care
Overall women were more satisfied with antenatal care rather than care during labour or postnatally
Women were dissatisfied with the level of understanding of their needs and the extent to which they were treated as an individual.
Findings similar in qualitative section.

9. Satisfaction in more detail
Limited OT input antenatally. When it was present, it was helpful but focused on equipment
No OT input described for labour and birth.
Limited OT post-natally and this is where women wanted input.
Wanted more input about parenting rather than equipment.

10. Choice Knowing what I want
Making choices not the same as enacting them
Despite knowing what I want, was not listened to
Need to be strong-willed
Enables me to self-advocate
Requires having the right information
Knowing what I want
Potential role for occupational therapist to support women to make decisions and sdvocate for their needs.
OT knowledge of disability currently missing in servive provision
Enables choice and control
Disability influenced what I want
Having choice and control was a positive experience

11. Continuity of carer
Continuity of carer enabled women to explain their needs.
A lack of continuity meant that women needed to repeat information about disability multiple times.
Some women decided not to raise concerns or ask questions ‘because it’s not worth it’ when only meeting a care provider once.
Women also wanted continuity of carer, as far as possible, throughout the pregnancy continuum.
Potential role for OT in supporting women throughout pregnancy and early parenting, particularly with planning for parenting and home adaptations / equipment.

12. Being listened to and treated as an individual
Some women described that they didn’t feel that they were being listened to or taken seriously.
When women felt that they were listened to, they felt that they had more information and control.
There were mixed views about being treated ‘differently’ because of disability.
Being respected as an individual was most important.
Client-centred practice conceptualized differently in different professions. Is there a potential role here for OTs as part of the MDT?

13. Too specialist for OT?
Many women described the impact of their pregnancy and birth experience on their long- term sense of self.
Some described re-considering their body and their attitudes towards it, others described mental health issues, some women described the impact on who they think they are.
Could appropriate OT input enable better transitions to parenting and more positive self perceptions?
Long-term implications not known.

14. Some conclusions for OT
OT was explicitly mentioned by several of the women: they highlighted that there was not enough OT input.
OT input described focused on home adaptations and equipment.
Women wanted support with the occupations of parenting.
While OT in perinatal mental health is now common, similar support may be needed for women with physical and sensory disability.

15. References
Birthrights (2013) Dignity in Childbirth: the Dignity Survey 2013: women’s and midwives’ experiences of UK maternity care Accessed 09/10/14 Available from: Hall J, Collins B, Ireland J, and Hundley V. (2016) Interim report: The Human Rights & Dignity Experience of Disabled Women during Pregnancy, Childbirth and Early Parenting. Centre for Midwifery Maternal and Perinatal Health, Bournemouth University: Bournemouth. Lipson, J.G. & Rogers, J.G. (2000) Pregnancy, Birth and Disability Health care for Women International pp11-26 Malouf R, Redshaw M, Kurinczuk JJ, Gray R (2014) Systematic review of heath care interventions to improve outcomes for women with disability and their family during pregnancy, birth and postnatal period. BMC Pregnancy Childbirth.14:58. doi: / Šumilo et al. (2012) Prevalence and impact of disability in women who had recently given birth in the UK BMC Pregnancy and Childbirth, 12:3 Walsh-Gallagher D, Sinclair M, McConkey R. (2012) The ambiguity of disabled women's experiences of pregnancy, childbirth and motherhood: a phenomenological understanding. Midwifery Apr;28(2): doi: /j.midw Epub 2011 May 13. Walsh-Gallagher D, R, Sinclair M, Clarke R.(2013) Normalising birth for women with a disability: the challenges facing practitioners. Midwifery Apr;29(4): doi: /j.midw Epub 2013 Feb 1.