Evaluating services that are linked to health-related stigma

CHPR Blog November 2019 – Louise Warwick-Booth

Earlier this year, a number of us working in the Centre for Health Promotion Research completed an evaluation of a local maternal stop smoking service. Our evaluation methods usually involve gathering the views of those who use services, as this is of course central to finding out about what works for people and learning about how to make improvements.

In practice, even when working with vulnerable and hard to reach service users (for example, the homeless community and victims of domestic abuse), we usually speak to small numbers of people because these are complex areas.  Service providers are keen to hear these views too, so, we are supported by them in our data collection efforts.  For example, they ask people if they want to participate, pass on their details to us (with permission) and sometimes contact them on our behalf with details of the evaluation.  None of this is perfect but each evaluation is a puzzle with different pieces that fit together, within the limits of deadlines, funding and practical challenges.

In this instance, we had support from the service provider to recruit service users who we wanted to speak to about their views (by using a semi-structured interview).  Despite emailing all of the service users on their database and offering a £10 Love to Shop voucher as a token of thanks, we had just one woman agree to take part, but she later changed her mind when we contacted her directly. We then designed an online survey, again aiming to capture the perspectives of service users.  The link to this was emailed out via the service providers database, with accompanying information about the evaluation. Respondents were again offered a £10 Love to Shop Voucher for completion of the survey.  At the end of the survey, respondents were asked if they wished to take-part in a follow-up interview and offered a further £10 Love to Shop Voucher (to be paid after the interview).

The service provider held the contact details of 212 pregnant women who had been referred for support to help them to stop smoking, so we had a large potential sample to speak to. However, only 10 people completed the survey.  Of these 5 had used the stop-smoking service, 4 had never smoked, and 1 preferred not to say. So, only the relevant data from 5 respondents was included in our final report, and 3 of these women had not been successful in their quit attempts despite the service support. 4 of the 5 relevant survey respondents also consented to be contacted for a follow-up interview, but this translated into us being able to speak to 1 woman.

The limited data from a service user perspective prevented us from drawing conclusions regarding the overall evaluation of the service and the impact it had on its clients. The recruitment of pregnant women as participants in health-related research is challenging especially if the topic is sensitive or results in increased knowledge of pregnancy related complications (which smoking during pregnancy does).  Furthermore, moral judgements are commonly directed towards mothers during pregnancy especially those who smoke, which may well have influenced the lack of service user engagement with our evaluation.  The one woman that we did speak to, who had successfully quit and been able to maintain her non-smoking status, implicitly acknowledged the stigma that is afforded to women who smoke whilst pregnant.  She had smoked during several pregnancies prior to her successful quit attempt but acknowledged that she did not “like to see heavily pregnant women out in public smoking.”

Health-related stigma is widely discussed in the academic literature, as are gender-specific value judgements – both are relevant here.   There are widely held views in every society about what it means to be a good mother, and smoking during pregnancy is not part of these expectations, therefore it is stigmatised.   This is likely to explain our difficulties in speaking to women who had smoked during pregnancy, especially those who had not been able to quit.

Our full report findings are available here

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