To what extent are midwives adapting information for women with learning disabilities? (Phase 3 – Interviews with women)
Introduction
This report to the Florence Nightingale Foundation outlines my research progress during the academic year 2015/16 with a focus on the final phase of my data collection, which included semi-structured interviews of women with learning disabilities (LD).
Background to my research
Women with LD have an increased exposure to economic and social disadvantage (Emerson 2011). These factors have a negative impact on antenatal health and wellbeing and worse pregnancy outcomes compared to the general population (Lewis 2007; Mitra et al. 2015). Unmet health needs due to difficult or limited access to relevant health care services can be an issue for women with LD (McConnell et al. 1997; Begley 2010). Responsibility has been placed on providers of health care to consider how best they make their service inclusive which includes the provision of ‘accessible’ health information (Michael 2008). However, while some examples of adapting antenatal information to make it more accessible have been reported (Porter et al. 2012) it is not clear how widespread these practices are.
Ethical approval
Research for this final phase of the study could not commence until favourable ethical and full research and development (R&D) approval had been granted; this was successfully obtained via the Integrated Research Application System (IRAS). All data collection tools and participant information materials were developed and submitted at the point of Research Ethics Committee (REC) application. R&D approval was also obtained from the lead sponsor and the NHS Trust involved.
Methods
This research study adopted a mixed methods design to develop multiple perspectives and a more complete understanding to address the research question: To what extent are midwives adapting antenatal information for women with learning disabilities (LD)?
An explanatory sequential mixed methods design consisting of two distinct parts: collection and analysis of the quantitative data followed by collection and analysis of the qualitative data was undertaken in three phases: Phase 1 – A national e-mail survey questionnaire for all acute maternity units in England (quan); Phase 2 – Focus groups with key stakeholders and policy makers – Focus groups were used with a purposive sample from the maternity units who responded to the survey (QUAL).
The final phase of the study (phase 3) involved undertaking semi-structured interviews with pregnant women or women who had recently given birth that booked for maternity care (n=6) (QUAL). This part of the study aimed to explore the views and experiences of women with LD regarding provision of antenatal information during pregnancy through semi-structured interviews. It included women with LD and focused on their antenatal information experiences. The objectives for this phase of the research were to explore:
-if women understood the written antenatal information given by midwives
-if antenatal information was adapted for them
-what was good about the written antenatal information they were given
-what could be improved
-if women understood the information in their hand held maternity notes.
A flexible interview guide was developed, piloted and tested on women with LD not taking part in the research. The questions were modified in response to women’s individual needs.
Conclusion
Recruitment is now complete and analysis of the interviews has commenced. The analysis of data and writing up of this study in the form of my Doctoral thesis continues in this current academic year (2016/17). I am pleased to report that I have now moved to writing up status and my progress is in line with my plans for completion by September 2017.
Dissemination
A systematic review of both quantitative and qualitative literature (Homeyard et al. 2016) that informed the design of this study was published in the peer reviewed international journal Midwifery. The purpose of the review was to identify and synthesize the existing evidence on the provision of antenatal care for women with LD. A paper has also been accepted for the 31st International Confederation of Midwives (ICM) Triennial Congress Midwives making a difference in the world in Toronto, Canada 18-22 June, 2017.
Acknowledgements
I would like to thank The Florence Nightingale Foundation and the generous award from The London Network for Nurses and Midwives who funded my University fees 2015/16. It was a great honour for me to be awarded this prestigious scholarship.