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‘We both just wanted to be normal parents’: a qualitative study of the experience of maternity care for women with learning disability
  1. Reem Malouf1,
  2. Jenny McLeish2,
  3. Sara Ryan3,
  4. Ron Gray1,
  5. Maggie Redshaw4
  1. 1National Perinatal Epidemiology Unit, University of Oxford, Oxford, UK
  2. 2Policy Research Unit in Maternal Health and Care, National Perinatal Epidemiology Unit, University of Oxford, Oxford, UK
  3. 3Department of Primary Care, University of Oxford, Oxford, UK
  4. 4Nuffield Department of Population Health, NPEU, Oxford, UK
  1. Correspondence to Maggie Redshaw; maggie.redshaw{at}npeu.ox.ac.uk

Abstract

Background More women with learning disability (LD) are becoming mothers. Women with LD have rights to equal access to maternity care that meets their needs, however, many have poor pregnancy and birth outcomes compared to other women in the UK. Research is limited in this area.

Objectives The aim of the study was to explore the lived experiences of pregnancy, childbirth, prenatal and postnatal care and services received by this group of women in the UK, including their expressed information and support needs relating to maternity care.

Methods A qualitative study in which data were generated using in-depth semistructured interviews with learning disabled women who were pregnant or had given birth within the last 3 years in the UK; data were analysed using interpretative phenomenological analysis.

Results 9 women with varying levels of cognitive impairment took part. 4 super-ordinate themes were identified: ‘I hate being treated differently’, ‘I find it harder to understand than other people’, ‘We've had to prove ourselves’ and ‘Make sure you've got very good support around you’. Subthemes included: ‘Negative attitudes and denial of choice’, ‘Understanding of normal care’, ‘Written information’ and ‘Being judged by professionals’.

Conclusions With support from family and services, learning disabled women can become confident and successful parents. Maternity services should make reasonable adjustments when providing care to this group, including adapting to their individual communication and learning needs: allowing sufficient time in appointments, offering clear explanations of each aspect of care and sensitive support for autonomy and fully informed choice. Mothers who will be subject to a social care assessment of their parenting skills need clear information about the process, their choices and the level of skill they must demonstrate, as well as access to sufficient antenatal and postnatal support to give them the best possible chance of passing the assessment.

  • learning disability
  • maternity care
  • disability
  • pregnancy
  • postnatal care

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

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Footnotes

  • Contributors MR, RG and RM designed the study. RM contacted the advocacy groups, support workers and health professionals, made visits and gave talks about previous disability research and the planned study. RM and SR undertook the visits, and SR carried out the interviews. JM undertook the main analysis supported by MR and RM. JM, MR and RM drafted the manuscript, and all authors commented and approved the final version.

  • Funding The study was funded by the Policy Research Programme in the Department of Health.

  • Disclaimer The views expressed are not necessarily those of the Department of Health.

  • Competing interests None declared.

  • Ethics approval National Research Ethic Services (NRES) Committee for South Central—Berkshire Ethical Committee approved the study. The Research Ethics Committee Reference (REC) number: 12/SC/0495.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement The sensitive interview data collected will not be available for data-sharing. Selected recordings may be made available on the Health Experiences website.

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