A new pathway to parenthood
By Sarah Bennett & Kris Southby on 23 November 2018 Midwives Magazine Disabilities
Sarah Bennett was awarded the RCM Ruth Davies bursary to evaluate an integrated care pathway for pregnant women with learning disabilities. She and Kris Southby present their findings.
Women with learning disabilities/difficulties/autism (LD) may be at increased risk during pregnancy. The reasons include higher rates of comorbidity (Department of Health, 2004) and potentially being less able to follow advice on prevention or self-care (Cantwell et al, 2011). In December 2016, an integrated maternity care pathway for pregnant women with LD was launched in Leeds. This article describes the pathway and the study that was undertaken to evaluate its impact.
The integrated maternity care pathway
The Maternity strategy for Leeds 2015-2020 includes developing targeted support for identified populations as one of nine priority workstreams (Leeds CCG, 2015). A local maternity health-needs analysis had already identified mothers with LD as over-represented in the cohort of women who have their babies removed under the age of one, and as a group for whom a care pathway would be beneficial (Erskine, 2014). In 2016, a multidisciplinary group co-developed, with women, a maternity care pathway for women with LD, consisting of an amendment to the booking system so that midwives can ‘flag’ if a woman has LD, guidance for clinicians on additional care, information about services to which women can be referred, easy-read resources, and a one-hour training module for community maternity teams to undertake as part of their priority portfolio.
Methods
An evaluation of the impact of the pathway on midwives and women with LD took place between March 2017 and June 2018. The objectives of the evaluation were: to identify any changes to referrals to supporting agencies; assess the effectiveness of the new recording procedure; consider the effectiveness of staff training; understand how the challenges midwives experience in providing care to women with LD has changed following the introduction of the pathway; and understand women with LD’s experiences of the maternity care pathway.
Data came from three sources, using a mixed-methods design. First, routine admission and referral data about the number of women ‘flagged’ as having LD during the evaluation period was collected. Second, community maternity staff completed a questionnaire before and after attending the LD training session; 143 staff (13 MSWs and 130 midwives) completed the pre-training questionnaire and all but five completed the post-training questionnaire. Third, six semi-structured interviews were conducted with midwives (n=4) and women with LD (n=2).
Analysis of the quantitative flagging and training data produced relevant description and inferential statistics (T-test). Qualitative interview data was analysed thematically (Riessman, 2008) to discuss and sort emergent themes for significance to research objectives.
Results: flagging and referrals
Prior to the development of the pathway, there was no local method for recording the number of women with an LD receiving maternity care; information about women’s antenatal care was recorded in hand-held notes. As part of the care pathway, a new ‘flag’ option of LD was added specifically for pregnant women receiving care in the trust. Midwives are required to notify the lead nurse of any women with LD. She ensures a ‘flag’ is placed on the woman’s electronic hospital records, along with a record of any reasonable adjustments required. The system is to support and enable appropriate care for women with LD and also ensure that midwives are supported in providing care.
Between January 2017 and December 2017, 24 women with LD were flagged. As this data have not been collated before, it is not possible to assess the efficacy of this system for capturing numbers of women with LD encountering maternity services in the city. Instead, this data will provide a benchmark for future years.
For the evaluation, the number of referrals of women with LD to a targeted preparation for parenthood (PP) programme and a family support (FS) programme were examined. During the evaluation period, more than 70% (12 out of 17) of referrals to the PP programme came from midwives. This figure is not greater than before the pathway was implemented. During the same time period, the FS programme received nine referrals of women with LD, three of which had come from midwives. The data show no increase in the number of referrals to either the PP or FS programme during the evaluation period following the introduction of the pathway. However, this information does provide a baseline from which to observe future progress.
LD training questionnaire
Prior to the training, many staff were unsure of how to best care for women with LD. In general, midwives found the training ‘very helpful’, particularly for knowing the availability of services to which to refer women with LD. Analysis shows a statistically significant increase in midwives’ preparedness, confidence in communicating with women with LD, and understanding of providing and documenting reasonable adjustments following training (see table, below). Midwives explained how having the training while having a woman with LD on their caseload had sealed their understanding and empowered them. A number of staff came forward to train as LD champions immediately following the training. Interviews Interviews explored midwives’ experience of LD training, the challenges of caring for women with LD, and midwives’ and women’s experiences of care since the introduction of the pathway. Four themes emerged:
1. The impact of caring
Midwives spoke of the personal and professional pride they felt in caring for women with LD on their caseloads. These midwives shared their experience, knowledge and skills with their colleagues, and were empowered by their experiences of caring for women with LD. Midwives reported after the training that they felt more supported by their teams and colleagues with whom they often ‘buddied’ to provide care. MSWs’ involvement in providing personalised care was mentioned throughout the interviews.
‘It’s quite scary thinking that you’re going to get something wrong... I was constantly worried: “Have I done everything right, have I done everything right?” That’s why it was good to have [the lead midwife] on board. And I tell you who has been fantastic, [colleague’s name]. She would say: “You’ve done really well with her.” You know, just somebody talking to you about the patient because it’s a big burden to carry’ – Midwife 4.
2. Supporting complex care
Midwives spoke about women with LD often booking for midwifery care late and with unplanned pregnancies. The women interviewed also reported that their pregnancies were a surprise to them. ‘I thought it was wind before I found out… I was in shock at the time I found out. I didn’t know how to tell [the father]’ – Woman 1.
Many social confounding factors were also reported in the interviews. A consistent thread of abuse weaved through the stories during the study. Communication, particularly literacy, and memory issues were challenges.
In addition, midwives often became drawn into complex social situations: dysfunctional and abusive relationships with family and partners, neglect, poor housing and mental health issues (such as self-esteem and self-harm). Midwives were generally frustrated by the difficulty in navigating care thresholds for further support from adult social care.
Midwives felt the pathway had supported their care to women with LD over and above what was previously available. They were more able to make reasonable adjustments, supported by the resources that were introduced to support the care pathway and the trust’s LD team. The resources were also appreciated and utilised by the women.
‘The information I got was from my midwife. [Showing interviewer the easy-read booklets] I have no problem understanding this. It is sometimes there are certain words they use that I find quite hard to understand. She spent more time with me, to help me understand better’– Woman 2.
3. Collaborative care
The LD care pathway provided midwives with a range of services available and enabled them to recognise the value of working collaborative with colleagues and other agencies. Midwives became more confident in exploring women’s existing support networks and involving, and referring to, other agencies. Woman 1 said that she ‘didn’t have much help’ during her first pregnancy and the child was taken into social care. She reflected on all the support she had as part of the care pathway to enable her to parent her current baby. Support was instigated by her midwife and included an MSW, health visitor, PP and FS programmes, and a social worker.
4. Personalised care
Midwives aspire to be responsive to individual choice and need in their care. However, pre-training data suggested that many midwives and MSWs were unfamiliar with reasonable adjustments. Following the training, the four midwives interviewed all gave spontaneous and detailed descriptions of reasonable adjustments they had made to ensure that women are at the heart of the plan of care. Utilising the care pathway resources, midwives were more able to tailor their care to the needs of women with LD and coordinate support for the women. One midwife described her experience caring for a woman with LD:
‘I followed the pathway and went with what [the woman with LD] wanted... We got her involved with the children’s centres and the health visitor. The hospital passport was really good as this lady had epilepsy too, and I got a phone call from her consultant in the epilepsy clinic who rang my number to discuss this lady with me personally. Without it, she probably wouldn’t have found it.’ – Midwife 2.
Discussion and conclusion
Consistent with a previous study (Homeyard et al, 2016), this mixed-methods evaluation of the integrated maternity care pathway for women with LD has demonstrated that caring for women with LD is challenging but very rewarding for midwives.
While the pathway has not caused an immediate rise in referrals of women with LD to external support agencies, midwives are now more aware of what support is available and of how to make referrals in the future. The pathway provides a means to gather data regarding the number of women requiring reasonable adjustments for their LD. The training improved staff preparedness, confidence to communicate, and awareness of additional resources/support. Several midwives and MSWs went on to access further training provided by the trust to support their role as LD champions.
The pathway has increased midwives’ abilities to provide personalised care; a key recommendation of the national maternity review. Better births advocates midwife-led continuity models that provide care from the same midwife or team of midwives (Cumberlege, 2016).
While continuity of carer is a driver for maternity transformation for all women, women requiring reasonable adjustments, such as those with LD, could benefit from this model of care the most. The evaluation suggests that the care pathway may be having positive effects in this regard, giving midwives and women with LD more knowledge about the maternity experiences and more tools and resources to effectively navigate the journey together. Ongoing monitoring and assessment is needed to assess the long-term impact of the care pathway.
Study limitations
Despite extensive work to recruit interview participants, only a small number of interviews were conducted. Further research into the experience of maternity care and outcomes for women with LD is required.
The research was potentially impacted by two sources of bias. First, the interviewer, as a practising midwife, was known to many of the participants. Second, there was a self-selection bias in midwives and women with LD who volunteered to participate. Finally, there was little time delay between the implementation and evaluation of the pathway. Continuing to track referral data and ‘flags’ of women with LD is necessary to see if the care pathway is effecting more systemic changes.
Sarah Bennett is senior midwife at West Yorkshire and Harrogate Local Maternity System; Dr Kris Southby is research fellow at the Centre for Health Promotion Research, Leeds Beckett University