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Littlewood E, Ali S, Dyson L, et al. Identifying perinatal depression with case-finding instruments: a mixed-methods study (BaBY PaNDA – Born and Bred in Yorkshire PeriNatal Depression Diagnostic Accuracy). Southampton (UK): NIHR Journals Library; 2018 Feb. (Health Services and Delivery Research, No. 6.6.)
Identifying perinatal depression with case-finding instruments: a mixed-methods study (BaBY PaNDA – Born and Bred in Yorkshire PeriNatal Depression Diagnostic Accuracy).
Show detailsThe aim of the EoA was to investigate the acceptability and impact of the Whooley questions and EPDS depression case-finding questions and the extent to which they each capture appropriate information for effective screening/case-finding of depression in perinatal care.
The objectives of the EoA were:
- to assess the acceptability of the Whooley questions and EPDS depression case-finding questions for women and HPs
- to understand women’s processes of answering the Whooley questions and EPDS depression case-finding questions in terms of their understanding, confidence and recall methods
- to explore women’s perceived effectiveness of the Whooley questions and EPDS depression case-finding questions in relation to their current and historical symptoms
- to explore the impact of the Whooley questions and EPDS depression case-finding questions in relation to women’s subsequent experience on the care pathway.
Method
Complementary methods, including a quantitative acceptability survey (see Chapter 3 and Appendix 5) and in-depth interviews among expectant and new mothers and HPs, were conducted to collect acceptability and related data to address the aim and objectives of the EoA study.
Both sets of acceptability data were collected independently by different researchers and prior to analysis of either data set. This approach aimed to provide two complementary and independent sets of cognitive evaluation data: (1) a quantitative description from a large cohort of women and (2) a qualitative in-depth analysis from a subsample of those same women.
Sampling
Recruitment and consent of women participants
Recruitment and consent of women participants are described in Chapter 3. All women who consented to take part in the BaBY PaNDA study completed the quantitative acceptability survey tool as part of the data collection procedure for the study. Women were assured anonymity and confidentiality at the beginning of all interviews and all women were reminded of the study’s aims and were given the opportunity to ask any questions they may have relating to the study.
Recruitment and consent of health professional participants
The heads of midwifery and health visiting at each study site (Harrogate, Hull, Scunthorpe and Goole, and York) were contacted via e-mail and/or telephone by a qualitative researcher (AC) to obtain their permission to contact trust staff. The heads of midwifery and health visiting were also asked to provide contact details for staff meeting the sampling criteria; these staff were then e-mailed about the study and provided with a participant information sheet and a consent form (see Appendix 7). Interested HPs were asked to contact the qualitative researcher directly to arrange a time and location for the interview to take place, should they wish to take part.
Data collection
Both the acceptability survey and in-depth interviews employed a cognitive framework149 to collect data from individual women on their processing and understanding of each question and their given answer on that day for both case-finding questionnaires: the Whooley questions and EPDS. After a general question on whether or not women thought screening/case-finding in pregnancy and early postnatal periods was a good idea for each case-finding instrument, questions within the cognitive framework included women’s views on the degree of comfort, understanding, ease of completion and confidence in the accuracy of the answers for the individual questions within each case-finding instrument (EoA objectives 1 and 2).
The acceptability survey asked women to rate their views on a five-point scale of ‘very comfortable’/‘very easy’/‘very sure’ through to ‘uncomfortable’/‘difficult’/‘very unsure’ for each question (see Appendix 5).
The semistructured interviews explored and examined women’s views and their reported experiences on the cognitive acceptability of the Whooley questions and EPDS questions in more detail. The in-depth interviews with women also collected detailed data on women’s self-reported historical and current experience of depression and/or anxiety, including self-harm and/or suicide (EoA objective 3) and their historical and current experiences of being pregnant and/or a mother of a new baby. These contextual data provide important insights into the interpretation of cognitive findings of acceptability (EoA objectives 1, 2 and 3). All women who had experienced or were currently experiencing depression, with or without anxiety, based on the CIS-R diagnostic reference standard provided data on their experience of the care pathway (EoA objective 4). This included a subgroup of longitudinal interviews for women specifically to collect data on their experience of the care pathway over a series of two or three interviews from pregnancy through to 12 months postnatally.
Health professionals were interviewed to explore their experience of delivering the depression case-finding instruments in routine clinical practice and were asked to describe their training needs and suggestions to improve routine practice in their trust sites.
Interviews with women and HPs were conducted using semistructured topic guides (see Appendix 6). For interviews conducted with women, separate topic guides were used at 20 weeks’ gestation, 3–4 months post birth and 1 year post birth (see Appendix 6).
Additional open-ended probes examined the case history of, and experience on the care pathway for, individual women. Interviews with women lasted between 25 minutes and 119 minutes and were conducted at the woman’s home or workplace, or an alternative location if preferred. Interviews with HPs lasted between 36 and 83 minutes and were conducted in a private room at the trust site or, if participants preferred, at the University of York. All interviews were audio-recorded and were fully transcribed and anonymised before data analysis.
Interviews with women were conducted face to face when possible or over the telephone between February 2014 and February 2016. HP interviews were conducted between November 2015 and March 2016.
Data analysis
Women’s categorical ratings for the cognitive questions within the acceptability survey were counted and summarised descriptively (n = number of women per category, % of total women) by the lead statistician.
In-depth interview data were coded and mapped for analysis within a framework approach, following the stages as outlined by Ritchie and Spencer:150 familiarisation, identifying a thematic framework, indexing, charting and mapping, and interpretation. Familiarisation involved the researcher immersing themselves in the raw data by reading interview transcripts and listening to audio-recordings while making preliminary notes of recurrent themes and initial ideas. A thematic framework was then developed based on the researcher’s initial perceptions, issues raised by interviewees, the study’s research questions and in discussion with the senior qualitative researcher (LD). The framework was revised a number of times, starting as descriptive and based on a priori issues with it then being applied to a number of transcripts, and refined as it became more responsive to emergent and analytical themes. Indexing of data involved the systematic application of the numerical codes in the thematic framework to the transcripts. Codes were then checked, refined and reviewed further. Data were then organised by mapping onto the relevant part of the thematic framework to form charts. One chart per theme was created in NVivo 10 for Windows (QSR International, Warrington, UK), including the theme, subthemes and direct links to verbatim text in the transcript for each participant. The coding and mapping work was conducted by three researchers, two for the women’s interview data (LJ and ZR) and one researcher for the HP interview data (AC). Quality assurance of data coding was completed by LD, the lead qualitative researcher, to independently check a 10% sample of transcripts for comparability of coding and data entry.
Analysis and interpretation of the interview data from women was undertaken by the lead researcher (LD), who had conducted the first interviews among women in the prenatal and postnatal assessment periods (n = 25). Analysis of the HP data was conducted by the researcher who had conducted the HP interviews and coding and mapping of data within the framework (AC). Analysis involved exploring associations between themes, creating new themes and providing explanations for the findings.
The lead qualitative researcher (LD) integrated the findings from the acceptability survey and data from the interviews conducted with women and HPs including recommendations for research and/or implications for practice.
Results
Sampling frame
Women participants
Quantitative acceptability survey
A total of 391 expectant mothers completed the quantitative acceptability survey as part of their BaBY PaNDA prenatal assessment (at 20 weeks); 345 of these women completed the survey as part of their BaBY PaNDA postnatal assessment (at 3–4 months).
In-depth interviews
A total of 25 women completed at least one interview during the perinatal period. This included first interviews for 17 pregnant women following their BaBY PaNDA prenatal assessment (at 20 weeks) and eight new mothers following their BaBY PaNDA postnatal assessment (at 3–4 months).
Sampling targets were achieved for the number of women who participated in at least one interview (25 women, target of 25). Slightly fewer women than targeted participated in at least three interviews (three women, target of five). The majority of interviews (31/39) were completed during pregnancy and the early postnatal period, exceeding the target of 20–25 interviews in this period.
Although the number of women who completed a third interview was slightly below target, a total of eight women completed an interview (first or second) at 12 months postnatally, within the target of 5–10. Figure 6 shows the flow of in-depth interviews conducted throughout the study.
Data saturation was achieved within the sample of 25 participants on the complex issues underpinning acceptability of the two depression case-finding instruments for women of different ages, parity, positive/negative screens for depression (based on the primary diagnosis from the CIS-R diagnostic reference standard) and study sites. Oversampling of women with a current episode of depression (56% of women interviewees compared with 10% of the BaBY PaNDA sample) was achieved to increase the scope for data saturation on cognitive views of the case-finding instruments among the primary target population group and the care pathway experience.
In summary, recruitment targets in terms of numbers and diversity were achieved, aiding the achievement of data saturation for all EoA objectives and confidence in the transferability of findings to similar population groups beyond this study sample (see Discussion).
Health professional participants
Characteristics of health professional participants
Qualitative semistructured interviews were conducted with 11 HPs across the four study sites. To preserve anonymity, study sites will be referred to as trust A, trust B, trust C and trust D in relation to interviews conducted with HPs. The sample included seven HVs and four MWs from across the four study sites: trust A (n = 3), trust B (n = 3), trust C (n = 2) and trust D (n = 3). HPs in one study site were mental health champions and included the perinatal mental health lead for the area. Alongside clinical practice, these individuals were involved in the delivery and development of mental health training and pathways. Characteristics of HP participants are presented in Table 19.
Our original recruitment target was to purposively sample 12 HPs (six MWs and six HVs) across four study sites according to profession, professional grade, age, location and experience. However, delays in obtaining letters of access at study sites and difficulties with identifying and contacting heads of midwifery and health visiting at study sites, limited recruitment. Although the sample of HPs is considered diverse as different study sites, professions and levels of experience are represented, the relatively small numbers of MWs (n = 4) in comparison with HVs (n = 7) and the fact that HPs in one study site were are all HVs with a specific interest in perinatal mental health are considered limitations on the achievement of data saturation and the generalisability of findings beyond this study sample (see Discussion).
Evaluation of acceptability
This section presents the combined findings of both the quantitative acceptability survey and the in-depth interviews conducted among expectant and new mothers and HPs regarding the EoA and effectiveness of the questions and EPDS case-finding instruments (study aim and EoA objectives 1, 2 and 3). A breakdown of the findings from the quantitative acceptability survey can be found in Appendix 9.
The findings of the acceptability evaluation are presented in three main sections. The sections and their associated emergent themes are reported as follows.
- Section 1: acceptability of screening/case-finding in the perinatal period
- Theme 1: acceptability of screening/case-finding in the perinatal period.
- Theme 2: ease of understanding Whooley and EPDS case-finding questions.
- Theme 3: ease of remembering Whooley and EPDS case-finding questions.
- Theme 4: confidence in answers to the Whooley and EPDS case-finding questions.
- Theme 5: comfort to answer the Whooley and EPDS case-finding questions.
- Theme 6: overall comparisons of the Whooley and EPDS case-finding questions.
- Section 2: experiences of depression in the perinatal period
- Theme 7: when is feeling tired and hopeless a problem in the perinatal period?
- Theme 8: social expectations of pregnancy and motherhood.
- Section 3: care pathway issues
- Theme 9: facilitators of, and barriers to, screening/case-finding.
Section 1: acceptability of screening/case-finding in the perinatal period
Theme 1: acceptability of screening/case-finding in the perinatal period
Quantitative acceptability survey
Of the 391 pregnant women who completed the acceptability survey, 95% felt that it was a good idea to ask women about how they were feeling during pregnancy using the Whooley questions or the EPDS. A similar proportion of the 345 mothers who completed the acceptability survey at around 3–4 months postnatally felt that it was a good idea to ask women about how they were feeling during early motherhood using either the Whooley questions (95%) or the EPDS (97%).
With the exception of two women who participated in the in-depth interviews, pregnant women and new mothers widely supported the idea of screening/case-finding for depression in the prenatal and postnatal periods as an acceptable, welcome and important thing to do. This included views of expectant and new mothers with diversity in age, parity, location across the Yorkshire and the Humber, and Northern Lincolnshire, study regions and women with some or no experience of historical or current depression and/or anxiety.
Some of the main reasons why screening/case-finding was reported as important included recognition of depression as an important issue that can affect anyone when they are pregnant or have had a baby; the need to identify women who are experiencing depression who ‘soldier on’ without the help they need; and to identify those women as early as possible. Illustrative quotes for these reasons are provided below (see also Appendix 10). The following text also indicates some underlying concerns regarding a lack of priority given to depression as an issue for expectant and/or new mothers and the potential for cases of perinatal depression to go undetected and unsupported.
Women’s views on why screening/case-finding in the perinatal period is a good idea
(1) Taking depression seriously as it is an important issue that can affect anyone (see Appendix 10 for examples of more quotations):
I think people treat it [depression] so differently [to physical health problems], so yeah, I would see it as a good thing, definitely. ‘Cos if you don’t have the opportunity, if you’re not specifically asked, you could probably just, you just keep trying to soldier on.
Trust C 2273 (20 weeks prenatal)
(2) Good to identify women with depression and as early as possible (see Appendix 10):
I think that it’s [screening/case-finding] good actually ‘cos before, you didn’t get that [depression or anxiety] before, when you was pregnant and that, you didn’t get that. But it’s like when me sister had the first one [baby], she got depression . . . and no-one even noticed ‘till later on when she had the baby, a bit later on after when the little un was growing up.
Trust D 2639 (20 weeks prenatal)
(3) Important to screen throughout the perinatal period as things change or do not get picked up initially (see Appendix 10):
I think with you asking me, had anyone asked about me after the early stages, had it sort of, had I been getting depressed later on, I don’t think anybody would have noticed if I hadn’t said anything. So continuing it for longer with, yeah, the sort or run of the mill questions.
Trust A 3913 (12 months postnatal)
Health professionals who participated in the in-depth interviews considered that, overall, screening/case-finding was beneficial, particularly given the potential implications of not identifying mental health issues during the perinatal period. The case-finding instruments were described as a useful ‘way in’ to discussing mental health, particularly for women who were reluctant to discuss the subject, or who showed no obvious signs of mental health issues in how they were presenting. A minority of HPs also felt that the standardised approach to screening/case-finding reduces the potential for women to feel singled out or stigmatised and provides a mechanism for measuring whether or not women’s mental health is improving throughout the perinatal period:
Mums have said yes, that they do feel like harming themselves and yet I wouldn’t have known that if it hadn’t have been for asking that question.
HV, trust A, 04
There was a consensus among HPs that, although the case-finding instruments are important, they are not essential, with HPs often using a range of other methods to identify depression and anxiety; particularly in situations for which there is a perceived discrepancy between how women are presenting and their screening/case-finding scores.
Particular emphasis was placed on discussions with women about their mental and emotional well-being, highlighting the need to establish a good rapport with women. Discussions were mainly used for women who score in the mild–moderate depression range on the case-finding instruments to ascertain whether or not these scores are due to underlying mental health issues or other factors such as sleep deprivation or financial concerns. Discussions were also used to distinguish between normal emotional fluctuations during the perinatal period; demonstrating the need for HPs to use their experience and clinical judgement. Finally, when case-finding instruments cannot be used, discussion forms the main method for identifying mental health issues. Additional methods commonly used to identify depression and anxiety included women’s body language; non-verbal cues; attachment and bonding; and previous, current or family history of mental health problems. The importance of women disclosing any previous history of mental health problems and their readiness to admit issues, particularly in severe cases, was also frequently mentioned:
I’ve had occasions where people have answered no to the screening questions but it’s really obvious that there’s something going on, and that’s maybe not even that they’re not not telling you but perhaps the way the questions are doesn’t represent their mental illness or their episode of what’s going on with them, so then you’d be looking for signs; with them it could be communication, body language, lack of, you know, lack of eye contact, for example, talking to the ground, monotone voice, that kinda thing. It could be that you walk into the house and you see a deterioration in the house.
HV, trust D, 03
Theme 2: ease of understanding Whooley questions and Edinburgh Postnatal Depression Scale case-finding questions
Whooley questions 1 and 2 were considered ‘easy to very easy’ to understand by 97% and 98% of women, respectively, who completed the prenatal acceptability survey. Similar results were reported for new mothers completing the postnatal acceptability survey.
Data from the in-depth interviews suggest that there are directly conflicting views on how women view the questions and their answer within the context of being pregnant or a new mother. One woman who was interviewed in both the prenatal and postnatal periods thought that Whooley question 2 may be confusing because some people may be less interested in doing things because they do not have the energy to do so since having a new baby, rather than because they are depressed. Another pregnant woman related a lack of interest or pleasure in doing things to the tiredness of pregnancy but was not bothered by this:
I just think it’s part of the pregnancy and you’ve got to get on with it, but I know I have less interest.
Trust D 2919 (20 weeks prenatal)
These issues highlight the complex differences in views and experiences of different women in how to answer and interpret the case-finding questions given the overlap between symptoms of tiredness and change in mood in pregnancy and motherhood and true depression (see Theme 7: when is feeling tired and hopeless a problem in the perinatal period? for further detail).
Only one-fifth of the 25 women completing in-depth interviews, comprising two expectant mothers and three new mothers, explicitly reported that they found the terms in Whooley question 1 clear and understandable. This compared with the majority of women who found Whooley question 2 easy to understand and having a clear meaning.
The majority of women reported in the interviews that they had a clear understanding about the meaning of the term ‘depressed’, defining it as ‘being sad all the time, struggling to function, to do day-to-day things, feeling down over a long time or crying more than usual’. A small number of women understood ‘feeling down’ and ‘depressed’ as quite similar in meaning, whereas most women defined ‘feeling down’ as something that everyone experiences at some point and which will usually pass in time. Five of the six women who provided a definition of their understanding of the term ‘hopeless’ described this as struggling to cope at all and unable to see a way out, lacking in self-confidence as a person and/or a mother and being linked to thoughts of suicide.
Most expectant and new mothers defined the overall meaning of Whooley question 2 as losing interest in things that they used to do and found this to be a more personal approach than that in Whooley question 1 to identify if you are depressed.
The term ‘bothered’, included in Whooley questions 1 and 2, generated a lot of discussion among many of the expectant and new mothers, although most had a clear understanding of the term. The most common interpretations were described as whether your feelings have been affecting or worrying you, ‘got to you in some way’ or interrupted your usual activities. Three women had strong views that the term ‘bothered’ was unclear and confusing. One expectant mother expressed her concern that not being bothered about anything is part of feeling depressed and therefore inappropriate:
. . . ‘cos a lot of people [with depression] don’t realise that they have been down or, you know, they can’t be bothered to do things and such as that.
Trust A 2699
The term ‘often’, used in both Whooley questions 1 and 2, was defined differently by women, ranging from every day (the most common interpretation) to as infrequently as 3 or 4 days in a month. This finding may suggest that individual women’s understanding of Whooley question 1 or 2 is not consistent within the population group of expectant or new mothers. This approach places the emphasis on women to decide when feelings of being down, depressed, hopeless or losing interest or pleasure in things is occurring sufficiently frequently to be a problem. This assumes that women are aware of their experience of these feelings and willing to admit them to others (see Discussion) and that women are clear when physical and emotional changes commonly associated with being pregnant or a new mother are occurring and/or pose a threat to their mental health status (see Theme 7: when is feeling tired and hopeless a problem in the perinatal period?).
The 10 questions in the EPDS (see Appendix 5) were rated as ‘easy to very easy to understand’ overall by the majority of women who completed the acceptability survey during pregnancy (99%) and 3–4 months postnatally (99%). Individual questions within the EPDS that were rated the most difficult to understand during pregnancy were questions 1 (3%) and 5 (2%) and at 3–4 months postnatally were questions 1 (2%) and 3 (2%) (see Appendix 9).
Twenty-one of the 25 women who participated in the in-depth interviews and answered the question on the clarity of meaning of EPDS question 1 found it to be clear. Some women did express minor concerns regarding selecting the correct answer from the options available. With regard to difficulties answering question 3, two women expressed concerns about the lack of clarity for the meaning of the term ‘blamed myself unnecessarily’. Five expectant and new mothers had some concerns regarding the lack of objectivity in the meaning of the term ‘for no good reason’ in question 5.
Theme 3: ease of remembering Whooley and Edinburgh Postnatal Depression Scale case-finding questions
Around 95% of all expectant women found it ‘easy to very easy’ to remember their feelings when answering Whooley questions 1 (95%) and 2 (96%). The level of ease of remembering did vary between questions 1 and 2, however, with 10% more pregnant women finding it ‘very easy’ to remember their feelings to answer question 2 (64%) than to question 1 (54%) (see Appendix 9).
Similar findings were reported for new mothers at 3–4 months postnatally, who found it ‘easy to very easy’ to remember their feelings when answering Whooley questions 1 (96%) and 2 (97%). Again, relatively more mothers of new babies found it ‘very easy’ to remember their feelings to question 2 (63%) than to question 1 (57%) (see Appendix 9).
Expectant and new mothers who participated in the in-depth interviews were more divided about the ability to remember their feelings within the last month to answer Whooley question 1. More women (n = 10) expressed difficulties regarding the period of 1 month for remembering their feelings when answering question 1. This included nine women who preferred a shorter time period as they were finding, or would expect to find it difficult to remember what they did last week now life is so busy having had (or expecting to have) their new baby. Eight women considered a month to be relatively easy and straightforward. The majority of the women who preferred a shorter time period had already had their new baby and felt very busy, whereas most women who were happy with a month were around 20 weeks pregnant.
In contrast, there were twice as many women in the interviews who found they could, compared with those who could not, remember their feelings within the last month to answer Whooley question 2. Both expectant and new mothers thought question 2 was more practical and could think of examples straight away, making it easier to remember over a 1-month time period than question 1.
With regards to the EPDS questions overall, the majority of pregnant women (98%) and new mothers (98%) found it ‘easy to very easy’ to recall their feelings in the past 7 days to answer the questions in the EPDS. This is consistent with findings for data from the in-depth interviews, in which pregnant women and mothers of new babies universally reported that it was easier to remember their feelings to answer the questions over a 7-day period than a 1-month period.
When asked about each of the 10 questions within the EPDS case-finding tool, pregnant women and new mothers found responses to questions 1 (2%/2%), 2 (2%/2%), 4 (2%/2%) and 6 (2%/1%) the most difficult to recall both during pregnancy and postnatally. No specific concerns were raised regarding difficulties of remembering feelings to inform the answers to any individual questions within the EPDS by women participating in the in-depth interviews.
Theme 4: confidence in answers to Whooley and Edinburgh Postnatal Depression Scale case-finding questions
Nearly all expectant women were ‘sure to very sure’ about their answers to Whooley questions 1 (98%) and 2 (99%) (see Appendix 9). In contrast, approximately two-thirds of women who participated in the in-depth interviews were confident about their answer to question 1 and one-third were not confident. Nearly all the women who reported not feeling confident about their answers to question 1 explained that this was a lack of confidence in being able to provide an honest and accurate answer due to the extreme nature of what question 1 is asking. Feeling down is considered a more acceptable term for discussion of and potential identification of depression than depressed or hopeless (see illustrative quotes below and Appendix 10).
Discomfort for women to answer wording of Whooley question 1 honestly
See Appendix 10 for further examples of quotations:
I think some people might be scared of the word ‘depressed’. Box ticking makes it too easy to play down the symptoms.
Trust C 2288 (20 weeks prenatal and 12 months postnatal)
I can relate to feeling down, hopeless is such an extreme term . . . If people just answer honestly, it’s hard if, you have to answer, the questions that you, are a bit risky.
Trust B 3171 (20 weeks prenatal)
Importantly, women’s lack of confidence in their ability to provide an honest answer to Whooley question 1 results in approximately half of the women interviewed in this qualitative study sample stating that this question would not generate a truthful response. These women conclude that the nature of the question is likely to result in women understating their feelings and experiences of depression and not getting the help and support they genuinely need. The strength of feeling regarding these concerns for Whooley question 1 was deep felt as well as widespread.
Similar concerns were expressed by HPs and may have influenced the way the questions were used and how the questions were asked. Although one HV from trust D felt that the questions were ‘loaded with the symptoms of depression’, others criticised the questions’ wording, describing them as ‘stilted’ and ‘wordy’ and saying that they interrupted the flow of their relationship with women. The terms ‘bothered’ and ‘hopeless’ were particularly criticised and described as ‘flippant’, ‘vague’ and ‘scary’:
Hopeless is such a strange word in our society to use, ‘cos hopeless kind of makes you feel like you should be just like on the floor not doing anything, doesn’t it?
MW, trust A, 06
In contrast, all nine pregnant women and new mothers who answered the question regarding their confidence in their answer to Whooley question 2 were confident in their answer and the truthfulness of that answer. Again, this was explained by the practical nature of the question, which women could relate to without difficulty or concern.
These findings were also consistent for mothers of new babies, who were ‘sure to very sure’ about their answers to Whooley questions 1 and 2 (99% and 99%, respectively). The proportion of mothers in the early postnatal period who were ‘very sure’ about their answer to Whooley question 1 (71%) was similar to that for pregnant women (70%). However, a slightly higher proportion of mothers were ‘very sure’ about their answer for question 2 about feeling little interest when asked in the postnatal period (75%) compared with being asked during pregnancy (71%) or compared with question 1 about feeling down in the postnatal period (71%) (see Appendix 9).
Women who answered ‘yes’ to either Whooley question 1 or 2 were asked a third ‘help’ question: ‘Is this something you feel you need or want help with?’.
The majority of women were ‘sure to very sure’ about their answer to the third help question if asked during pregnancy (93%) or the postnatal period (92%); around 5% of responses to this question were missing. Only 55–60% of women were ‘very sure’ about their answer for question 3 regarding help, compared with 70–75% for questions 1 and 2 regarding feelings of being depressed or having little interest.
The relatively lower scores regarding confidence in answering the third ‘help’ question compared with scores for questions 1 and 2 are supported in the findings of women’s views on and experiences of this question as discussed in the in-depth interviews. There was widespread support for the offer of help to women who had answered yes to either question 1 or 2 and particularly the use of both terms ‘need’ or ‘want’ in relation to help. In fact, one pregnant woman was of the view that help should be offered without asking question 3 if a woman answered ‘yes’ to questions 1 or 2 (trust A, 2493).
I think that’s a really good question to ask actually, I think that’s a really good question because, yeah, do you, do you want help; who from I suppose. Is this something you feel you need or want help with from a, maybe you could tick who, who you would, which health professional you would like help from.
Trust B 1296 (3–4 months postnatal)
It’s, it’s like somebody giving out like a helping hand. It’s, it’s somebody asking the question that you’re kind wanting to ask them.
Trust D 3486 (20 weeks prenatal)
Two main concerns influencing women’s ability to answer the help question, however, were expressed by several women: (1) a lack of knowledge regarding what type of help is available and a genuine fear of what the intervention might be and (2) it assumes women have admitted they are depressed to themselves and are willing to admit they need help to a HP (see illustrative quotations below and Discussion for underpinning theoretical concept of ‘surrendering’).
Reasons why women are less confident about their answer to Whooley question 3 regarding help for depression:
Reason 1: lack of knowledge of what help is available (see Appendix 10):
‘Cos I’d, I’d say no but then they [the health professional] might say something, and you think, oh yeah, that’d be a good idea. But I don’t feel like there is anything but I suppose I don’t, yeah, I don’t know what’s out there.
Trust D 2919 (20 weeks prenatal)
Reason 2: need to admit depression and need for help to self and others (see Appendix 10):
You’d have to acknowledge that something was wrong and be confident enough to ask for the help, not be embarrassed to.
Trust B 3171 (20 weeks prenatal and 3–4 months postnatal)
With regards to the EPDS questions overall, the majority of pregnant women (99%) and new mothers (99%) were ‘sure to very sure’ about their answers to questions in the EPDS when completing the acceptability survey (see Appendix 9). This is consistent with findings from the in-depth interviews, in which nearly all of the women who answered the question regarding confidence in their answers answered ’yes’ to all the questions.
When asked about individual questions within the EPDS as part of the acceptability survey, pregnant women were ‘particularly unsure’ about questions 3 (4%), 4 (3%) and 6 (2%), whereas postnatal women were ‘particularly unsure’ about questions 1 (3%), 2 (2%) and 9 (2%) (see Appendix 9). As detailed above, concerns regarding the meaning of the term ‘blaming myself unnecessarily’ may be a factor affecting women’s confidence in answering EPDS question 3. One woman was uncertain whether her unhappiness and frequent crying were as a result of a change in hormones due to being pregnant or because she was feeling down. This may partly explain why some women were less sure about answering EPDS question 9.
Interview women expressed very positive views regarding EPDS questions 6 and 8, which were compared favourably against Whooley question 1. Interestingly, question 10 regarding self-harm was acknowledged as important and well worded despite being difficult to answer.
Theme 5: comfort to answer Whooley and Edinburgh Postnatal Depression Scale case-finding questions
Nearly all women felt ‘comfortable’ or ‘very comfortable’ completing the Whooley questions (98%) and the EPDS (99%) during pregnancy. However, although 80% of expectant mothers were ‘very comfortable’ completing the EPDS questions, only 75% reported being ‘very comfortable’ answering the Whooley questions.
Similar findings were reported for women’s views in the postnatal period, with 99% of mothers reporting feeling ‘comfortable to very comfortable’ completing either the Whooley questions or the EPDS. Again, the proportion of mothers who in the early postnatal period felt ‘very comfortable’ completing the EPDS questions (80%) was higher than the proprotion who felt ‘very comfortable’ answering the Whooley questions (76%). Perhaps surprisingly, no women reported feeling uncomfortable completing either case-finding instrument in either the prenatal or postnatal periods (see Appendix 9).
The high levels of comfort in answering the case-finding questions were not supported by the findings from the in-depth interviews with respect to Whooley question 1. The majority of women reported in the interviews that, although it is easy to answer the questions, it is not comfortable to give an honest answer to Whooley question 1. For most women, the reason for such discomfort in giving an honest answer was due to the severity of the wording of question 1, which includes the terms ‘depressed’ and ‘hopeless’ (as detailed in Theme 4: confidence in answers to Whooley and Edinburgh Postnatal Depression Scale case-finding questions). The underlying cause of such discomfort appears to be grounded in a widespread perception among our interview sample that having depression or feeling hopeless is associated with highly negative social and cultural stigma. Such stigma is exacerbated by the pressure of sociocultural norms around pregnancy and motherhood as a time of jubilation and fulfilment (see Theme 8: social expectations of pregnancy and motherhood for more detail).
In addition, deeply held fears of the sociopsychological implications of being diagnosed with depression, namely, losing your baby or being monitored in your own home and judged by HPs as a bad mother, add to the discomfort of answering Whooley question 1 regarding feeling depressed or hopeless openly and honestly (see illustrative quotations below).
Social and cultural reasons causing discomfort for women to answer Whooley questions honestly
(1) Social stigma associated with depression, especially for expectant and new mothers (see Appendix 10):
It think it’s [depression] got a lot of stigma . . . I think I just didn’t want to be labelled . . . that word and, and, and it, it felt like I didn’t want a, I didn’t want to accept it because I should be a really, a good mum. You’re just expected to be perfect and oh, everything’s going lovely and look at the fantastic little baby and you wanna go, oh but I’m really struggling and I’m finding it hard.
Trust B 1653 (3–4 months postnatal and 12 months postnatal)
(2) Fear of consequences of having depression (see Appendix 10):
. . . it just felt like I couldn’t do it, I was going through the motions . . . I just wanted to cry . . . I used to go the doctors and not say anything obviously, but wanted them to ask, and then didn’t want to say, ‘cos then I thought they might take my children away from me.
Trust A 1839 (3–4 months postnatal)
The same feelings of discomfort about answering honestly and openly were not expressed for Whooley question 2. In general, this question was not perceived to have the high level of negative stigma associated with the terms used in question 1. One notable exception is the potential for expectant and new mothers to be concerned about being judged negatively if feeling little interest or pleasure in their new baby against the sociocultural, and sometimes personal, expectation to be the ‘perfect mother’, full of joy and fulfilment (see Theme 8: social expectations of pregnancy and motherhood for more detail).
Findings from the in-depth interviews regarding views on the ease and comfort of answering questions honestly for the EPDS were consistent with those reported in the acceptability survey. Overall, women who participated in the in-depth interviews expressed a very positive view of the EPDS. The main reasons for this were particular characteristics, including softly worded individual questions that are not threatening to the woman; softly worded answers to choose from that reflect the complexity and range of emotions experienced by women in the perinatal period; a gentle build-up to the more difficult questions strategically placed at the end of the questionnaire; and the nature and number of the questions creating an environment of perceived genuine interest in the woman’s emotional well-being rather than a tick-box exercise within an otherwise medical assessment (see illustrative quotations below):
. . . to me it [EPDS Q6 compared Whooley Q1] means that that things that you probably could deal with before are now overwhelming yer somewhat and you’re not coping, so it’s a softer version of those words like hopelessness.
Trust B 3776 (3–4 months postnatal)
. . . yeah the more direct ones [EPDS Q9 & 10] are at the end, which is good, because you’ve sorta built up that relationship first.
Trust A 2415 (20 weeks prenatal)
. . . probably it’s [EPDS Q10] one of the most important, you know, trigger questions to get someone help . . . and you know, it’s, it’s nicely worded, it’s clear and it’s not yeah, it’s easy to answer. So I think probably, yeah, needs to stay.”
Trust A 2493 (20 weeks prenatal)
Comfort for HPs to routinely ask Whooley questions
In accordance with NICE guidance (2014),101 all HPs reported using the Whooley questions in routine practice. For the majority, the Whooley questions were used as part of more general discussions about women’s mental health and emotional well-being. Although this may reflect a lack of training and awareness of why questions should be asked verbatim, how questions were asked and whether or not they were asked verbatim also varied according to time constraints, how women present (e.g. questions may not be asked if a woman is threatening harm) and women’s intelligence quotient and English-language skills:
I don’t ask them verbatim at all, if I’m honest, it’s sort of you know, I’ll ask about their mood, I’ll ask about how they’re feeling, you know, are you feeling.
HV, trust B, 08
Some issues with asking some case-finding questions verbatim were reported, with one HP also stating that they ‘wouldn’t dare ask if a woman had harmed their baby directly’. Despite this, the case-finding instruments were considered an important part of routine care, with the majority of HPs reporting feeling comfortable asking women about their mental health and using the case-finding instruments. This was largely attributed to mental health not being considered as sensitive as other topics discussed with women during the perinatal period (e.g. domestic violence, paternity).
I don’t feel particularly like it’s a hard thing to ask, I’m quite happy to ask, ‘cos it’s important, you know, at the end of the day. It’s like, I mean you’re asking them other things in here, like have they had any incontinence.
MW, trust A, 06
Situations in which more general discussions about women’s mental health were used instead of the Whooley case-finding instrument were also discussed. For instance, despite being a core contact, a minority of HVs reported not feeling comfortable about conducting the routine screening/case-finding at birth visits with the Whooley case-finding instrument because of their concerns that, given women’s potential emotional state, there would be a large number of FPs.
In addition, HPs did not feel comfortable using case-finding questions as routine practice if women had suffered significant trauma or bereavement or were experiencing a crisis, or had a history of depression or anxiety or had recently been screened by another HP. A midwife in trust C also reported how students were being told not to use the case-finding tools or ask women about their emotional well-being to avoid causing emotional distress:
. . . if I know that somebody has a history of depression and anxiety, for me personally, and they are seeing their GP, I don’t see it as appropriate to ask these questions, because they’re actually, they’ve already indicated that there are concerns and so might be able, an assessment tool or something you would do further down the line once they’ve started treatment, but I will discuss it with them.
HV, trust C, 11
Theme 6: overall comparisons of Whooley and Edinburgh Postnatal Depression Scale case-finding tools
The EPDS was rated more favourably than the Whooley questions for all cognitive criteria during pregnancy (at around 20 weeks):
- The EPDS was slightly more comfortable to answer for women than the Whooley questions (mean 1.26/1.37).
- The EPDS questions were slightly easier to understand for women than the Whooley questions (mean 1.28/1.32).
- It was considerably easier for women to remember answers to the EPDS questions (mean 1.35) than to the Whooley questions 1 (mean 1.65) and 2 (mean 1.57).
- Women were generally more sure about their answers to the EPDS questions (mean 1.35) than to Whooley questions 1 (mean 1.41), 2 (mean 1.41) and, particularly, 3 (mean 1.60).
Comparison of Whooley questions by key cognitive criteria between prenatal and postnatal periods
Understanding of questions was generally better than remembrering of responses. Although ratings at 20 weeks of gestation and 3–4 months postnatally were similar for all acceptability questions, they tended to be marginally more favourable at the postnatal time point. Ratings were generally lower for question 3, the help question, than for questions 1 and 2.
Comparison of EPDS case-finding tool between prenatal and postnatal periods
Although ratings at 20 weeks of gestation and 3–4 months postnatally were similar for all acceptability questions for the EPDS, they tended to be marginally more favourable at the postnatal time point.
Women in the interview sample (n = 25) were generally extremely positive about the EPDS as a case-finding instrument. The individual questions were considered to be appropriate and important, using single, ‘soft’ terms that, together, generate an overall assessment of depression and/or anxiety. Some women thought, for example, that the phrase ‘things have been getting on top of me’ was much more appropriate than its equivalent term, ‘hopeless’, used in Whooley question 1. The choice of answers was also described as a strength of the EPDS, reflecting the complexity of women’s feelings and experiences in the perinatal period, which cannot be readily broken down into a yes/no answer. Despite the length of the questionnaire, only two women expressed concerns regarding the acceptability of an individual question within the EPDS, namely the use of the expression ‘blamed myself unnecessarily’ in question 3:
I don’t know why these [EPDS] are acceptable and the first one [Whooley] aren’t. I think it’s just, yeah, ‘cos you, because there’s more scope I think, just people, people are more complicated than yes or no.
Trust B 3776 (3–4 months postnatal)
Section 2: experiences of depression perinatally
Theme 7: when is feeling tired and hopeless a problem in the perinatal period?
A recurring theme cutting across many of the findings of cognitive acceptability of the case-finding instruments is the lack of clarity on when common feelings such as tiredness and change in mood are considered a normal and acceptable part of being pregnant or a new mother and when they should be considered symptoms of depression necessitating identification, diagnosis and treatment.
Many women in our interview sample expressed concern and resulting unnecessary worry that their symptoms may be interpreted by the HP as them being depressed even though themselves did not believe this to be the case. Given the reluctance of many women to admit to being depressed in the perinatal period because of fears of the social stigma and its potential consequences (for example, losing their baby), it may be that some of these women are in fact experiencing depression but prefer to attribute the symptoms to the more socially acceptable explanation of pregnancy and/or new motherhood. This complicating factor specific to the identification of new cases of depression among women in the perinatal period creates an added level of uncertainty that requires understanding, discussion and guidance on how it should be managed consistently and effectively.
Four case studies are provided in Appendix 12. Case studies A–C illustrate the complex and diverse scenarios in which each woman expresses the view that her symptoms of depression or anxiety are as a result of being pregnant or a new mother, some of which are correct and some incorrect in this assessment, some are supported with the presence of clinically assessed symptoms of depression and/or anxiety and some are not, and some receive the help and support they need as others go undetected. The final case (D) illustrates the woman’s concern that her worries about being a good mother to her premature baby may be assessed as having a mental health problem.
Theme 8: social expectations of pregnancy and motherhood
Another recurring theme cutting across many of the findings of cognitive acceptability of the screening/case-finding tools is the social and personal pressure women face to feel joyful and jubilant as an expectant and new mother of a beautiful new and precious baby. Sadly, the daily reality of being pregnant, giving birth and parenting a newborn baby may not always feel as joyful and jubilant, despite the overwhelming love for the precious new life in the woman’s care. This personal disappointment can be a contributing factor towards feeling low mood in itself:
I think that’s what it was, I had an expectation in my head [about being a wonderful mother] and it wasn’t . . . working how I wanted it to work and I got myself in a bit of a mess about it.
Trust B 1653 (3–4 months and 12 months postnatal)
Social expectations can also add to a woman’s existing concerns about admitting to herself or others that she feels down or worried, making it less likely that women will give an honest answer to the case-finding questions:
. . . but also I think anyway, just, I mean even just the, the label ‘depression’ you know, people are very keen not to have that associated with them, very few people want to say they think they’re depressed, you know, particularly at a time in your life when you’ve just got this amazing new baby and you’re meant to be happy, you’re meant to be coping, and if I think, if you’re not, to tell someone that actually you’re not doing these things that all the bloody books and everything will tell you you’re meant to be doing. I think there’s a real problem there, to get people to answer truthfully (laughs) about how they’re feeling.
Trust A 1839 (3–4 months postnatal)
. . . you’re just expected to be perfect and, oh everything’s going lovely and look at the fantastic little baby and you wanna go, oh but I’m really struggling and I’m finding it hard.
Trust B 1653 (3–4 months and 12 months postnatal)
Everyone just expects you to be happy when you’ve had a baby and just get on with it.
Trust B 2321 (20 weeks prenatal)
As in the case of the complex overlap between symptoms of depression and physical and hormonal changes in the perinatal period discussed above, an understanding of the additional social pressures of motherhood by both the women and HPs and a commitment to discuss them openly may be considered a method to improve the effectiveness of the screening/case-finding process for depression among expectant and new mothers.
Section 3: care pathway issues
Theme 9: facilitators of, and barriers to, screening/case-finding
A number of facilitators of, and barriers to, appropriate and effective screening/case-finding were identified by expectant and new mothers and HPs during the in-depth interviews. Despite the open, unprompted nature of the question aimed at eliciting this information, both groups identified the same facilitators and barriers based on their views and experiences of screening/case-finding for depression in the perinatal period.
Location of screening/case-finding
Of the women who expressed a preference for a specific location, several identified their home as their preferred option on the grounds that this was more relaxed and there were fewer distractions. One woman, however, reported that her home visits from her HV felt rushed as the HV usually needed to get to her next appointment.
The over-riding requirement identified by most women was the need for the location to be private and quiet and without the presence of the woman’s partner, family members, a trainee HP or other patients. The midwifery clinic was explicitly identified as unsuitable owing to the lack of privacy and quiet space:
. . . he’d [partner] be listening upstairs, and then after they’ve gone, he’d go, why did you say that, do you know what I mean.
Trust D 3486 (20 weeks prenatal and 12 months postnatal)
Nearly half of the HPs identified the barrier of another person being present at home while conducting screening/case-finding and difficulties in asking that person to leave:
. . . grannies can be real barriers because, you know, they might just be a neighbour from down the road come to see the baby you see and you’re, you’re quite, you don’t want to kick ‘em out ‘cos you’re in somebody’s house.
HV, trust D, 01
Health professional to conduct screening/case-finding
In most cases, women who expressed a preference for a particular HP to conduct the screening/case-finding identified their HV or MW, as the continuity of care from the same team throughout the perinatal period had allowed them to develop a relationship with some of those HPs. In some cases, however, a poor relationship between the woman and her MW or HV specifically precluded this routine carer as the preferred option. Most women expressed a clear preference for their GP not to be the HP of choice owing to a lack of continuity of care and relationship with a single GP nowadays and/or their GP’s medical approach to mental health issues.
Some women would prefer to be screened by a mental health practitioner as they had experienced a rushed ‘box ticking’ exercise with their routine carer. A mental health practitioner is also considered by most women to have undergone the relevant training and have the relevant skills and experience to discuss and consider the questions and answers appropriately for the specific needs of the individual woman. For example, both HPs and women identified the need for the HP to be skilled in reading women’s body language as part of screening/case-finding.
The majority of HPs who participated in an in-depth interview also identified the importance of a good rapport and relationship with women on their caseload as one of the over-riding criteria for effective screening/case-finding for depression:
If you’ve built up that relationship before then they trust you as well, then you’re going to get, you know, somebody who’s going to open up more.
MW, trust A, 04
In summary, therefore, the HP conducting the screening/case-finding should have regular contact with the same woman over time, have developed a good working relationship with the woman, and should be trained and have the relevant skills and experience to discuss the screening/case-finding questions and/or answers appropriately for each woman.
Discussion of case-finding questions
Several expectant and new mothers expressed a preference to be asked the case-finding questions in person using discussion rather than a case-finding question-led approach. The willingness of a HP to spend the time doing that is an important part of the process as it creates an environment of patient centredness in which the woman’s emotional well-being and not the baby’s physical health, is the focus of the appointment. This approach assumes that the HP can plan the necessary time to conduct the screening/case-finding in this way, a barrier which is not easily overcome, and the HP has the appropriate personal communication skills to conduct the screening/case-finding appropriately. Training to improve communication skills for screening/case-finding of depression and anxiety should be standard practice to minimise the current wide variation in practice and communication styles:
I think if you had the relevant training you would know how to handle that situation and to be able to probe to get the effective answer.
Trust C 1489, mother (3–4 months postnatal)
Well I mean she [HV] was just like, you know, well she, basically phrased it in a way where, yes I feel fine, you would have to be a very strong person not to give that answer, you know. So it was very much phrased in a term, ‘Now, you know, so I, I need to just ask you about depression, you know, so I mean you’ve been feeling fine haven’t you?
Trust A 2493, expectant mother (20 weeks prenatal)
Advance warning and clear explanation about being asked screening/case-finding questions
Both expectant and new mothers and HPs identified the importance of being told in advance about the appointment to discuss the screening/case-finding questions. This would also help with the practicalities of arranging a suitable quiet and private location for the screening/case-finding:
A way to improve the verbal screening is if it is clearly explained beforehand, ‘I want to ask you a few questions about how your are feeling’.
Trust C 2288 (20 weeks prenatal)
. . . if they’re asked properly and if it’s explained, if it’s explained fully why we’re asking, what we’re asking and then people are getting the information that these are the things we are concerned about and why . . . then yeah it works, but if you’re just asking them again as a tick box, but that never works.
HV, trust C, 10
Summary
In summary, women and HPs have clearly identified a broad set of requirements that create an appropriate environment to facilitate improved and more effective screening/case-finding of expectant and new mothers for depression in the perinatal period. The environment should be patient-centred with a clear focus on discussing the woman’s mental health; pre-warning of the intended focus on the woman’s mental health; sufficient time to discuss the issues properly; a quiet and private space for the discussion; a good relationship between the mother and the HP conducting the screening/case-finding; a good understanding by the person conducting the screening/case-finding of the social stigma regarding being labelled as having depression and its potential impact on a woman’s ability to be open; and good communication skills of the person conducting the screening/case-finding to overcome a woman’s lack of openness resulting from her personal fears and/or social concerns.
This environment is more consistent with that experienced by pregnant women and new mothers when they completed their screening/case-finding questionnaires with an interviewer within the BaBY PaNDA study. Conversely, most of these environmental requirements are not typically in place when screening/case-finding for depression by a HP is routinely implemented in practice with a pregnant woman or new mother:
In terms of the scoring and knowing I was borderline but thinking no, I want help, . . . I was trying to give the right answer. I can’t remember exactly, and it was like well, is it, is it not, and I couldn’t decide which answer to go in and, the best way I can describe it is I felt like I was in an exam [with the HP] whereas with BaBY PaNDA I didn’t.
Trust A 1148 (20 weeks prenatal)
Evaluation of case-finding and care pathway
This aspect of the EoA aimed to explore the impact of the Whooley and EPDS case-finding questions in relation to women’s subsequent experience on the care pathway (EoA objective 4).
This objective was informed by data from the in-depth interviews among women participants and HPs. Their views on and experiences of screening/case-finding, referral, diagnosis, treatment and management of care for depression with or without anxiety are presented here.
Screening/case-finding instruments used for depression in the perinatal period
All HPs reported using the Whooley questions in routine practice (Table 20). HVs in two study sites were the only HPs who reported using the EPDS, with the tool used to determine severity and/or a need for referral in the case of women who responded positively to the Whooley questions. Among those HPs not using the EPDS, a couple described how their trusts had previously used the EPDS, with the perinatal lead for mental health in one study site being the only HP to provide an explanation for this change in screening/case-finding practice:
. . . we used to use the EPDS some years ago and then when NICE recommended PHQ-9 that’s when we moved and, and everyone moved, and now NICE recommend either, and so do the Institute of Health Visiting recommend either, but because everybody moved to PHQ-9 and we all use it, GPs and everybody now, ‘cos at the time they were using summat different, we were using, and it was, you couldn’t possibly assess somebody’s mental health if you’re all using different tools, so we all agreed we’d go with the PHQ-9.
HV, trust D, 01
Impact of screening/case-finding on health services
A large proportion of HPs felt that the screening/case-finding instruments bring added time pressures, particularly when women respond positively and require help. This was considered particularly problematic during busy clinics, with HPs discussing the dilemma of having a woman who needs help, while being aware of other appointments and short appointment times. For some, time pressures led to HPs worrying whether or not they had sufficient time to invest in exploring and identifying issues, and for two HPs, as a result, to save time, did not ask screening/case-finding questions at every appointment. More general time pressures and HP’s large caseloads also led to some HPs being concerned that they would not have time to make additional visits to women and provide support when needed. In contrast, one HP felt that there were no added time pressures as ‘women had always been asked about their mental health’:
. . . only you and you’ve got the, all these ladies waiting, you’ve got like an hour to see them all and you know you’ve got another visit to do and this person starts crying, how much time can you honestly invest in finding out what it is?
MW, trust C, 10
Although a minority of HPs felt that, because women had always been asked about their mental health, screening/case-finding had not increased demand on services, others felt that screening/case-finding may have increased pressure on other services, particularly GPs. However, HPs considered it the responsibility of these services to respond appropriately:
I’m aware that by the process of screening we will increase the pressure of you know, into primary care, it’s inevitable I think with screening that that would happen, yeah and I’m comfortable with that. I think, you know we need to, there’s no point in having a screening tool if you’re not going to back it up with primary care.
HV, trust D, 03
In one study site, the organisation was in a ‘transition period’ at the time of the study, with HVs soon to be commissioned by the local authority, resulting in uncertainty as to how their practice would be affected and staffing issues already emerging. For instance, staffing shortages, which in addition to high caseloads and the organisation’s perceived reluctance to cover the staffing deficit either through hiring bank staff or new staff or increasing current staff’s hours, led to women sometimes not being seen during pregnancy because of time constraints. As a result, HPs raised concerns relating to their own health and the potential for mental health issues to be missed:
At the moment people are leaving, they’re not replacing them, we’ve people off sick; so we have to prioritise the work that we’ve got, and obviously child protection and things like that will take priority. So I can’t speak for everybody else but I am managing to see all my ladies but I think some people are actually struggling to see them.
HV, trust B, 08
Health professionals had varied experiences of co-ordinated, or collaborative, care between health-care services and sectors to diagnose, refer and treat women with depression in the perinatal period. This includes variations between and across study sites. For instance, although MWs in three study sites discussed how HVs are alerted to women with mental health issues by MWs, examples of communication problems between MWs and between MWs and other hospital staff were reported in one study site (e.g. labour MWs not reporting concerns to postnatal MWs).
Referral and treatment pathways for patients with depression in perinatal periods
The complex referral and mental health-care pathways for women in the prenatal and postnatal periods as self-reported by HPs in the in-depth interviews are illustrated by trust, profession and severity of depression in Figures 7 and 8. The complexity of the care pathways between sites is largely a result of the large numbers of providers for mental health services and local decisions regarding the organisation of care to deliver those, often multifaceted and complementary, services.
Despite the inevitable local variation in organisation of care, universal standards for a core provision of care are evident across sites. Women who are considered to have mild depression and anxiety will receive additional visits and monitoring of symptoms as standard care. Women who are identified as having moderate depression, and sometimes women with moderate to severe depression, are usually referred to their GP when there is a clear need for medication and/or when a GP referral may be needed to access core counselling and support from primary mental health-care services such as cognitive–behavioural therapy (CBT) and an Improving Access to Psychological Therapies (IAPT) programme.
Barriers to referral and treatment
General practitioners’ awareness of mental health and their lack of knowledge regarding different treatment options and their responsibilities were frequently cited barriers to referral and treatment, which has in some cases led to women who have been referred to GPs being turned away. In regards to treatment, HPs gave conflicting accounts of antidepressant prescribing, with some perceiving GPs to be reluctant to prescribe, particularly during pregnancy, because of ‘the toxic effect on the fetus’, whereas others criticised GPs for rarely referring women for alternative treatment (e.g. counselling) and overprescribing medication. One HP also criticised GPs for not eliminating other potential causes of low mood (e.g. thyroid) before prescribing. A further issue with GPs was their failure to alert HPs when women’s medication had been stopped:
You get one GP who says, I like this antidepressant and I’ll give them that, you’ll get another one who’ll do something completely different; one will prescribe, one who won’t prescribe. So we do send people into a bit of a lottery, that’s my frustration.
HV, trust D, 03
Another commonly discussed issue was women’s reluctance or refusal to accept treatment. HPs perceived women to be particularly reluctant to be referred to GPs. This was often linked to perceptions that women are concerned about taking medication during pregnancy. However, women’s reluctance to receive treatment was also attributed to a desire to deal with issues on their own, previous poor experiences of treatment and a fear of having their baby ‘taken from them’:
Some women just don’t wanna go to the GP, they don’t wanna think about medication.
HV, trust B, 08
On a practical level, for HPs in two study sites, the extensive waiting times for women to receive counselling and CBT were considered barriers to both treatment and referral. For HPs in one study site, the closure of a local mental health hospital and subsequent lack of a mother-and-baby unit were of particular concern. A number of HPs also discussed how they receive no official feedback on the impact of screening/case-finding from GPs or other services and are reliant on women to inform them on current waiting times for treatment and referral:
Well I, I think all the cuts that are happening at the moment with the mental health services; I mean [name of local mental health hospital] just closed down, we’ve no close mother & baby unit and, as I say, the counselling, the waiting list for counsellors and CBT is so long it’s just ridiculous.
HV, trust A, 04
Although the mental health specialists in one study site showed an awareness of referral pathways and reported following NICE guidance, a small number of HPs from other study sites reported having limited knowledge of referral pathways. This was attributed by the HPs from two study sites to insufficient training. Associated with this, a minority of HPs acknowledged the importance of having the confidence to refer, which was perceived to be a particular issue for student HVs:
. . . it’s not clear to be honest, but I think we either have a form we can fill in and send off, but generally we ring up and there’s a, a number to ring, and this number changes a lot; so it’s a little bit confusing.
MW, trust B, 07
Additional barriers to providing treatment that were identified by a minority of HPs included insufficient time for HPs to provide additional visits; low-intensity support; and a lack of psychologists to determine the causes of depression and anxiety.
Women’s views and experiences of the mental health-care pathway
Nearly a quarter of women interviewed (6/25) were not aware they had been screened for depression during their recent pregnancy, birth or postnatal period. Of the women who were aware of having been screened, half (9/18) recalled being asked the Whooley questions and half recalled being asked how things were going or how were they feeling in general conversation. One woman was screened opportunistically for depression by her GP following an appointment regarding a cough, during which the issue of insomnia emerged.
Of the 25 women who participated in the in-depth interviews, 17 were classified as having a history, or current episode, of depression with or without anxiety. The classification was based on data collected for the CIS-R diagnostic reference standard completed during the BaBY PaNDA assessments. The views and experiences of being referred into, and treated and managed within, the local mental health-care pathway, are presented for several of these 17 women in Appendix 11 as individual case studies. Women’s experiences ranged from very positive to mixed and negative. The 17 women included nine women with a current episode of depression identified by the HP, three women with a history but no current episode of depression and five women who were identified as having a current episode of depression during the BaBY PaNDA assessment but not by the HP.
One woman who had been identified as having depression by her HP had a mixed experience on the care pathway. She had received good support from her HPs in the prenatal and postnatal periods, but was unable to access CBT without significant delay because there was a waiting list (trust C 2941). This resulted in her accessing CBT privately, although financial considerations resulted in this not being affordable once she was on maternity leave. This woman’s case of mild depression, historically and currently, was directly related to her devastating experiences of being an expectant mother. At age 42 years, she had experienced two multiple pregnancies with her partner through the in vitro fertilisation (IVF) programme; her first set of twin daughters died at 23 weeks’ gestation and one of her babies in her second twin pregnancy also died. The second twin, a baby boy, survived pregnancy and birth despite some initial health problems:
. . . so yeah, this pregnancy is very precious, . . . But yeah, it did make, there was, we had, we had to be very brave, let’s say, to start again.
Trust C 2941 (20 weeks prenatal)
The main findings emerging from the women’s diverse experiences suggest that the main factor influencing the care for women who are already on the mental health-care pathway appears to be the individual approach of the HP and the woman’s relationship with that HP. This is particularly important for women who are experiencing depression and are more likely to be feeling vulnerable and in need of familiarity and support. A woman’s state of readiness to ask for, or accept an offer of, help to treat depression has also been shown to be an important factor in the woman’s experience of the care pathway. The need for HPs to show a more balanced interest in both the physical health and development of the baby and the emotional well-being of the mother appears to be an important factor influencing effective screening/case-finding from the women’s perspective.
Overall, it is clear that some women are not being identified as a new case of depression and are not being appropriately referred for monitoring and/or treatment within the existing screening/case-finding, diagnostic, referral and treatment pathway. In some cases, this may be due to the lack of expertise and/or confidence of the individual HP to conduct a holistic and accurate assessment of the woman’s circumstances and readiness for help. In one case, this was the experience of a woman who was self-harming and asking for help. Conversely, there are clearly examples of exemplary practice when primary care professionals provide continuity of highly skilled and supportive care to ensure the safety of women and their babies is maintained until each woman is ready to receive, and/or additional services are available to provide, the full care she needs. These experiences highlight the underlying variation in care depending on the skill and commitment of individual HPs and the importance of core and refresher training to improve the standard of care across all HP groups. These experiences also highlight the need for women and HPs to be aware of the personal journey of admittance and readiness for help as a key factor influencing the management of individual women into and on the care pathway. An integral factor to a woman’s progression on this journey appears to be a lack of focus on the emotional well-being of the woman throughout the prenatal and postnatal periods. Women’s experiences of contacts with HPs focusing, virtually exclusively, on the health and development of the baby do not create a patient-centred environment conducive to them opening up about their feelings or being ready to admit that they need help.
Strategies to improve screening/case-finding and mental health-care pathway
A number of strategies to improve access to and provision of mental health-care services for all women identified as having depression in the pre- or postnatal periods were proposed by the HP interview participants, including two specialist mental health HPs. Strategies include training, organisation of care, dedicated appointments for mental health assessment, women support groups, joined-up screening/case-finding with children’s centres and screening/case-finding for fathers and partners (see Appendix 13 for details).
Discussion
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.
Recommendation for research
Mixed-methods research is needed to investigate the scope and complexity of relationships between a history of depression and/or anxiety, a positive or negative historical experience of the mental health-care pathway and women’s honesty in responding to the Whooley screening/case-finding questions for subsequent screening/case-finding episodes.
Implications for practice
The combined findings of the acceptability survey and in-depth interviews among expectant and new mothers, MWs and HVs to evaluate the acceptability of the Whooley and EPDS screening/case-finding instruments and their impact on the care pathway suggest the following implications for practice:
- The Whooley questions may have limitations in their acceptability, whereas fewer concerns were expressed about the EPDS.
- The evidence suggests that a patient-centred approach to screening/case-finding within a patient-centred environment will maximise the acceptability and effectiveness of any screening/case-finding instrument.
- Training of HPs on the appropriate implementation of any screening/case-finding instrument and discussion about emotional well-being within a patient-centred approach and environment has been evidenced as important.
- The normality of depression among women in the perinatal period could be emphasised as a first step to reducing the negative sociocultural stigma associated with depression.
- Evaluation of acceptability - Identifying perinatal depression with case-finding...Evaluation of acceptability - Identifying perinatal depression with case-finding instruments: a mixed-methods study (BaBY PaNDA – Born and Bred in Yorkshire PeriNatal Depression Diagnostic Accuracy)
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