Consideration of study findings within the literature
Screening and case-finding for depression in the prenatal and postnatal periods is widely supported by pregnant women, mothers of new babies up to 12 months of age and HPs caring for those women and babies who participated in the EoA study (as described above). These women and HPs consider depression to be an important and often neglected health issue, which would benefit from being detected more effectively and earlier. This is consistent with findings from two systematic reviews, one regarding the acceptability of postnatal depression screening/case-finding76 and another on the acceptability of perinatal depression screening/case-finding.151
Use of the cognitive evaluation method149 in the acceptability survey (n = 391 prenatal women, n = 345 postnatal women) identified that women viewed the EPDS questions as easier to understand, easier to remember and easier to answer more confidently than the Whooley questions. There are widespread concerns regarding the lack of appropriateness and effectiveness of Whooley question 1 among expectant and new mothers and HPs who were interviewed in this study. An in-depth examination of these cognitive differences among the women interviewed identified that some pregnant women and new mothers were ‘not comfortable’ with Whooley question 1, resulting in approximately half of the women interviewed admitting that their answer to this question was not honest and was an understatement of their feelings of depression. MWs and HVs share these concerns, stating that women’s body language and visible symptoms do not appear to match their answers to the Whooley questions resulting in most HPs adapting Whooley question 1 to instead ask a more general question about a woman’s feelings or mood.
The reason for the reported discomfort and inability to answer the Whooley question openly and honestly was clearly stated by women and HP interviewees as the ‘harshness’ and ‘severity’ of terms in the question, namely ‘depressed’ and ‘hopeless’. These women and HPs perceive that it is not socially acceptable for an expectant or new mother to be depressed or to feel hopeless, and believe that they will naturally wish to avoid the negative sociocultural stigma attached to these terms, particularly as a new mother. Stigma associated with depression in expectant mothers and new mothers who are traditionally expected to be experiencing joy and fulfilment in their new role is widely documented and theorised in the literature.103,152–155 It is the mother’s own recognition of the discrepancy between the emotions she is feeling and the emotions society perceives as normal for motherhood that initiates the mother’s symptoms of disappointment and depression. Robertson et al.155 and Nicholson156 have written extensively about the ‘dangerous myths’ operating among both professionals and lay people that equate becoming a mother with total fulfilment and happiness. Eight of the 18 studies in a meta-synthesis155 centred on the role of conflicting expectations and experiences of motherhood in the development of postnatal depression.
Furthermore, women and HPs identified that many women are genuinely fearful of the potential consequences of being identified as depressed or feeling hopeless, which could result in the mother being ‘monitored’ in her own home and ultimately losing her baby.103,152,157,158
Another reason women and HP interviewees gave for women finding it difficult to answer the case-finding questions correctly is uncertainty of whether the common symptoms of tiredness and change in mood are associated with depression or with being pregnant or a new mother. The theoretical normalisation of symptoms of tiredness, changes in mood, for example, as a ‘normal’ part of motherhood and not depression has been widely documented.103,152,159 The lack of differentiation between ‘transient distress’ and ‘enduring distress’ as a measure to discern when these symptoms are no longer appropriate has also been debated.160
Another factor that we identified as an important influence on a woman’s willingness to answer a screening/case-finding question honestly and/or accept help is whether or not the woman recognises that she has symptoms of depression and, if so, whether or not she has come to terms sufficiently with the social stigma to be prepared to admit these symptoms to a HP who is obliged to prioritise the welfare of the child over the mother. This finding is recognised in the literature as the concepts of ‘making gains’ and ‘surrendering’.155,161 ‘Surrendering’ is a big part of a mother’s recovery from postnatal depression. The concept of surrendering means realising that something is very wrong and that help is needed. Unfortunately, women’s initial interactions of ‘surrendering’ to their HPs can cause more distress; women reported that their concerns were ignored or minimised and ‘feelings of disappointment, frustration, humiliation and anger were commonplace’ (p. 55).155,161 This resulted in women failing to ‘make gains’ and halting their progression on the journey of self-recognition through to surrendering.
In our study, women and HP interviewees identified a ‘patient-centred environment’ as a prerequisite to asking questions about mental health.107,162 Many of the practical characteristics of such an environment are widely evidenced, including a private and quiet location, usually the home if privacy from the partner and family members can be achieved; a trained and skilled HP with good communication skills and ideally a good pre-existing relationship with the mother; a discursive approach around general well-being and the individual questions; and forewarning women of the process.76,103,151,154,157–159,163 Importantly, the women interviewed also believed that a patient-centred environment would give equal priority to the mother’s emotional well-being and the baby’s physical development and would create a non-pressured and non-judgemental environment for women to feel that the HP is genuinely interested in supporting the woman if she is open about her feelings.107,164
Darwin et al.103 described this patient-centred environment as the ‘context of disclosure’, and suggested that it will be more readily achieved in a research environment than in a routine care environment. Darwin et al.103 explain this as the reason why different studies show different results for validation of the same screening/case-finding instruments depending on whether the evaluation of validity was conducted by a researcher in a research setting100,165 or by a HP in a routine care setting.162 This may partly explain why the BaBY PaNDA study found the Whooley and EPDS questions to have similar levels of sensitivity and specificity when compared to the CIS-R reference standard. In the case of the BaBY PaNDA study, completion of the screening/case-finding instruments to assess their validity was conducted in a research setting by a researcher. However, within this research setting, the Whooley questions were asked and answers written down by an interviewer, the ideal scenario to generate the most open response from women, and the EPDS questions were self-completed by the expectant or new mother, a less than favourable scenario to generate the most open response from women. In the case of the in-depth qualitative interviews, both the Whooley and EPDS questions were asked individually to each woman by the interviewer and were discussed at length using the cognitive framework to ascertain women’s views on their understanding, ability to remember and confidence to answer each question. Based on the above-stated importance of an appropriate ‘context of disclosure’ to elicit genuine responses from women, the patient-centred environment created for the in-depth qualitative interviews would have been most likely to have generated open, honest responses from these women for both the Whooley and EPDS questions. This would suggest that the concerns expressed by approximately half of the 25 women about the appropriateness and effectiveness of Whooley question 1 are internally valid and can be interpreted with confidence.
Hewitt et al.76 reported that women who were found to have postnatal depression (EPDS score of ≥ 13) experienced statistically significantly more discomfort in completing the EPDS than women who were not found to have postnatal depression (p < 0.0001) and did not experience discomfort in completing the EPDS. A preliminary analysis of the interview data with women by their mental health status (based on a diagnosis from the CIS-R reference standard and self-reported history of depression and/or anxiety) does suggest that, within this sample of expectant and new mothers, women who were experiencing a current episode of depression were more likely to experience discomfort in answering Whooley question 1, whereas the small group of women who had a history of depression or anxiety with no current episode and some women who had a history with a positive care pathway experience followed by a current episode were more likely to have experienced a high level of comfort in answering Whooley question 1. These findings may be a result of women with a history of depression or anxiety having progressed positively through their personal journey of self-recognition and ‘making gains’ to actively seeking help at an early stage of their next episode of depression or anxiety and depression, and/or increased confidence in the health-care support they may receive.
Overall, these findings suggest that, even in the ideal scenario of HPs conducting their screening/case-finding assessments in a patient-centred environment with a patient-centred approach to screening/case-finding, women who have a current episode of depression without a positive care experience for a historical episode are likely to underestimate their feelings and feel uncomfortable answering Whooley question 1 honestly and openly.
Strengths and weaknesses of the evaluation of acceptability
The EoA achieved its overall aim of ascertaining valuable large-scale descriptive information from women about the acceptability of the Whooley and EPDS screening/case-finding instruments and explanatory in-depth information from women and HPs about the extent to which the questions each capture appropriate information for ascertaining the presence of depression in both the prenatal and postnatal periods. The purposive oversampling of women with a history and/or current case of depression for the in-depth interviews achieved a comprehensive exploration of the impact of being referred onto the mental health-care pathway in both the pre- and postnatal periods. Furthermore, the subsample of longitudinal interviews for a maximum of three occasions from 20 weeks’ gestation through to 12 months postnatally provided a novel insight into the whole care pathway experience throughout the perinatal period. In-depth interviews with HPs provided a complementary perspective on the barriers to and facilitators of screening/case-finding and the provision of mental health care within the local organisation of care. Importantly, the combination of in-depth cognitive and care pathway experience from each woman with a validated diagnostic reference standard classification of her mental health status has afforded a unique insight into the complex and often inter-related explanatory factors underpinning the lack of appropriateness or effectiveness of individual case-finding questions (as detailed above).
As detailed in Chapter 5, the large and diverse sample of women completing the acceptability survey gives confidence in the generalisability of findings to women from similar population groups across the UK. One notable limitation is the under-representation of women from diverse ethnic backgrounds living in the study locations. The validity of the data may be compromised for some questions for some women who find a question confusing or do not agree with any of the answers available (for an example see Ritchie and Spencer150).
The sample of women participating in the in-depth interviews achieved target sample sizes (see Results) and diversity of characteristics including approximately equal numbers of women having their first or second child, a spread of different ages across the typical childbearing age range, a spread across study sites and an over-representation of women with a history, or current case, of depression. A key limitation in terms of generalisability to other locations is the under-representation of women from different ethnic backgrounds, a reflection of the general population living in the study locations. The effective sampling and achievement of data saturation within the large number of interviews provide confidence in the generalisability of findings to other women with similar characteristics regarding women’s views on acceptability, appropriateness and effectiveness of the screening/case-finding questions and their experiences on the care pathway.166,167
Difficulties in recruiting HPs resulted in slightly fewer HPs taking part in the in-depth interviews than targeted (11 and 12, respectively). A broad range of issues was identified by individual HPs on the key topics of interest. Given the adherence to data collection protocols, topic guides and the skills and experience of the interviewer, the findings of individual HPs as a generic group of professionals who conduct screening/case-finding for depression in the perinatal period can be treated with confidence in terms of the internal validity of data.150,168 However, the small sample sizes of subgroups of MWs, HVs and HVs with a speciality in mental health warrants caution in generalising findings beyond these subgroups.
Women were asked to answer each screening/case-finding question based on how they were feeling that day and to discuss their cognitive views of each question based on their views and experiences that day. Participant recall was not a factor that may have affected the reliability of data.
Triangulation of study findings across the three data sources identified agreements and inconsistencies between the findings. Further analysis of the data to investigate descriptive inconsistencies generated meaningful explanatory insight into the underlying reasons why women and HPs had concerns regarding Whooley case-finding question 1.169
In summary, the appropriateness of the EoA research methods nested within the diagnostic accuracy study to collect data from a subsample of women and HPs who have direct experience of the screening/case-finding instruments gives confidence in the internal validity of the findings. The acceptability survey generated large-scale, reliable descriptive data, although it may have some limitations regarding its validity for some women due to the uncertainty or limited options available for a self-complete method of a closed questionnaire.170 Interview data from the HPs are considered valid but of limited generalisability and interview data from the women are considered both valid and generalisable. Confidence is at its highest for findings that are in agreement across all three data sources.
