- Email: [email protected]
Defining vulnerability in European pregnant women, a Delphi study
Midwifery 86 (2020) 102708
Contents lists available at ScienceDirect
Midwifery journal homepage: www.elsevier.com/locate/midw
Defining vulnerability in European pregnant women, a Delphi study J. Scheele∗, H.W. Harmsen van der Vliet–Torij, E.M. Wingelaar-Loomans, M.J.B.M. Goumans a
Research Center Innovations in Care, Rotterdam University of Applied Sciences, Rochussenstraat 198, Rotterdam 3015 EK, the Netherlands
a r t i c l e
i n f o
Article history: Received 14 May 2019 Revised 12 March 2020 Accepted 23 March 2020
Keywords: Delphi study Definition Vulnerability Pregnant women Europe
a b s t r a c t Objective: Vulnerability among pregnant women is an important and complex theme in the everyday practice of midwives. Exchanging knowledge and best practices about vulnerability between midwives in Europe can contribute to improving the knowledge and skills of midwives and as a result improve the care for vulnerable pregnant women. We therefore start a consortium with midwives, midwifery teachers, researchers and students from organizations of seven European cities with the aim to exchange knowledge and best practices concerning vulnerable pregnant women between midwives. To be able to effectively exchange knowledge and best practices, our consortium started with this study focuses on establishing a mutual definition of vulnerable pregnant women. Therefore, the aim of this study is to develop a mutual definition of vulnerable pregnant women and to identify aspects related to vulnerability. Design: Delphi study with four rounds: (1) gathering existing knowledge from literature and definitions used by partners of the consortium, (2) and (3) two survey rounds and (4) an in-person consensus meeting. Setting: Consortium of midwives, midwifery teachers, researchers and students from Antwerp (Belgium), Ghent (Belgium), Turku (Finland), Milan (Italy), Piła (Poland), Lisbon (Portugal) and Rotterdam (The Netherlands) Participants: We included all consortium members in the Delphi study. Findings: Various aspects related to vulnerability and appropriate definitions were identified during the Delphi rounds. Consensus about the aspects related to vulnerability and the definition of vulnerable pregnant women was reached during the final consensus meeting. A vulnerable pregnant woman was defined as a woman who is threatened by physical, psychological, cognitive and/or social risk factors in combination with lack of adequate support and/or adequate coping skills. Key conclusion: We reached consensus about a mutual definition of vulnerable pregnant women and aspects related to vulnerability within this consortium. The Delphi approach led to interesting discussions and was a valuable method to define the concept of vulnerable pregnant women within our project . Implications for practice: In order to accomplish a project that aimed to improve care for vulnerable pregnant women it was important to first identify the population of vulnerable pregnant women with a mutual definition. © 2020 Elsevier Ltd. All rights reserved.
Introduction Vulnerability is an important risk factor for maternal and perinatal mortality and morbidity (Bonsel et al., 2010; de Graaf et al., 2013; Posthumus et al., 2016). Vulnerability is a broad and complex concept, in which both medical and non-medical; social and
∗
Corresponding author. E-mail addresses: [email protected] (J. Scheele), [email protected] (H.W. Harmsen van der Vliet–Torij), [email protected] (E.M. WingelaarLoomans), [email protected] (M.J.B.M. Goumans). https://doi.org/10.1016/j.midw.2020.102708 0266-6138/© 2020 Elsevier Ltd. All rights reserved.
other risk factors play an important role (Steegers et al., 2013; Harmsen van der Vliet – Torij, 2017). It is therefore a topic relevant for midwives, obstetricians, researchers and policy makers. Care for vulnerable pregnant women is challenging because of the different kinds of problems vulnerable pregnant women have to cope with, many of which require the support of different professionals (Steegers et al., 2013). Several initiatives have started throughout Europe to improve care for vulnerable pregnant women in order to reduce adverse pregnancy outcomes. Initiatives include screening lists for vulnerable pregnant women and buddy projects for vulnerable pregnant women (Hoogewys, 2012). Exchanging knowl-
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J. Scheele, H.W. Harmsen van der Vliet–Torij and E.M. Wingelaar-Loomans et al. / Midwifery 86 (2020) 102708
edge about these initiatives and other knowledge available can be valuable for midwives to help them improve their care for vulnerable pregnant women. A consortium is therefore formed with the aim to exchange knowledge and best practices about vulnerability during pregnancy between midwifery practices in a number of European cities. This consortium consists of midwifery teachers, researchers and midwives from organizations in various European cities: Antwerp (Belgium), Ghent (Belgium), Turku (Finland), Milan (Italy), Piła (Poland), Lisbon (Portugal) and Rotterdam (The Netherlands), who are all experts on the topic of vulnerable pregnant women. In order to effectively exchange knowledge and best practices it was important to define the concept of vulnerable pregnant women. Unfortunately, until now, there is no consensus on the definition of vulnerable pregnant women despite the fact that several definitions for vulnerability have been proposed in literature (Aday, 1994; Flaskerud et al., 1998; Briscoe et al., 2016). Some of these definitions are established for specific vulnerable populations, such as vulnerable pregnant women, but some definitions are global definitions of vulnerability. For example, the definition of Aday et al., 1994, could be used for different populations: ‘Vulnerable populations are populations at risk for poor physical, psychological, and/or social health’, whereas the definition of Briscoe et al., 2016, is more specific, defining vulnerability during pregnancy, birth and the postnatal period as: ‘Women are vulnerable when they experience ‘threat’ from a physical, psychological or social perspective, where ‘barriers’ and ‘reparative’ conditions influence the level of vulnerability’. In addition, some consortium partners formulated their own definition for vulnerable pregnant women. Because of the various definitions in use, it is important to formulate a mutual definition with all consortium partners before starting exchanging knowledge and best practices within the consortium. This mutual definition will define the concept of vulnerable pregnant women, prevent misconceptions and make it easier to communicate. In order to identify vulnerable pregnant women it is also important to identify aspects related to vulnerability. Therefore, the aim of this study is to develop a mutual definition of vulnerable pregnant women and to identify factors related to vulnerability. To this end, we perform a Delphi study. Methods Participants Because this study aimed to develop a mutual definition of vulnerable pregnant women among consortium members in order to effectively exchange knowledge and best practices, the Delphi panel consisted of all members of the consortium. This included researchers, midwifery teachers and midwives from the participating organizations in the following cities: Antwerp (Belgium), Ghent (Belgium), Turku (Finland), Milan (Italy), Piła (Poland), Lisbon (Portugal) and Rotterdam (The Netherlands). The participants varied slightly during the Delphi rounds, due to the availability and response of the consortium members. All participating consortium members were invited to complete both questionnaires. Some midwifes and students have joined the consortium at a later stage and therefore have not filled out the first or both questionnaires. Non-responders received several reminders and non-responders of the first questionnaire were also invited to complete the second questionnaire. The consensus meeting took place during the first live meeting of the consortium. For this meeting, one or two midwifery teachers and/or researchers, one or two midwives and one student were invited from each participating organization. When there were more consortium members, the consortium members from the different organizations decided themselves who joined the live meeting, which was mostly based
on availability and participation level. All participants of the live meeting joined the in-person consensus meeting. Study design and data analysis The design of this study is a Delphi study, because a Delphi study is an appropriate method to gain consensus among experts about a certain topic. This Delphi study consisted of four different rounds aimed at reaching consensus. Round one: overview of existing knowledge First, we identified (1) existing definitions of vulnerable pregnant women in literature and existing definitions used by the consortium members and (2) aspects that were related to vulnerability during pregnancy as described in literature and indicated by the consortium members. Literature was reviewed for existing definitions of vulnerable pregnant women or definitions of vulnerability that could also be applied to vulnerable pregnant women. All the various definitions and aspects were listed and used in round two. A previous literature search conducted by the research group was supplemented with a new search in PubMed (Harmsen van der Vliet – Torij, 2017). Pregnancy was used as MeSH term in combination with vulnerable or vulnerability in title/abstract. This search strategy was also combined with the search of definition or defin∗ in title/abstract. Round two: questionnaire I The information gathered in round one was used to create a questionnaire. Existing definitions and known aspects of vulnerability that were related to vulnerability during pregnancy were listed in the questionnaire. An extensive description of the literature search and the questionnaires is available on request. The questionnaire consisted of four questions: (1) A list of aspects (n = 32) related to vulnerability that were collected during round one. Respondents were asked whether, in their view, these aspects were indeed related to vulnerability. (2) Whether participants felt that the aspects selected in question one of the questionnaire should be part of the mutual definition of vulnerable pregnant women. (3) A list of existing definitions gathered in round one. Respondents were asked to select five definitions that they felt best described vulnerable pregnant women. (4) Respondents were asked to rank the five selected definitions indicating which definition is the most appropriate. This online questionnaire was created and sent with online surveytool LimeSurvey. Round three: questionnaire II In this round, the same questionnaire as in round two was sent to the participants, but the anonymous results of round two had now been incorporated into the questionnaire. Based on the results of round two, the order of the items was changed, starting with the item that was most frequently selected in the round two. Question one, containing the list of aspects that were related to vulnerability, now also included information about the percentage of participants that had selected the aspects in the second round. Question two, the question about whether the selected aspects should be included in the definition, also contained information about the percentage of participants that had indicated that the aspect should be part of the definition in the second round. Question three, with the list of existing definitions, also contained information about the percentage of participants that had selected the definition in round two. Question four, the ranking of existing definitions, also contained information about the percentage of participants that had ranked the definition first, second or third in the second round. Before the consensus meeting, a list of proposed aspects related to vulnerability and a proposed definition was created, based on
J. Scheele, H.W. Harmsen van der Vliet–Torij and E.M. Wingelaar-Loomans et al. / Midwifery 86 (2020) 102708
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Fig. 1. Flowchart of Delhi study.
the results of the questionnaires in rounds two and three. Proposed aspects related to vulnerability were all aspects that had been selected by ≥70% of the participants in both questionnaires. There is no agreement in literature about the cut-off levels for consensus in Delphi studies, but an agreement of ≥70% has been applied in various studies (Hasson et al., 20 0 0; Cassar Flores et al., 2014). The proposed definition was based on the definition that had been selected most often and ranked the highest in both questionnaires. Answers to the question ‘which aspects should be part of the definition’ from both questionnaires were used to add relevant aspects related to vulnerability to this definition, if necessary. Round four: consensus meeting A consensus meeting took place during an in-person meeting of the consortium (held on October 3rd 2018). First, the results of the first three rounds and the proposed aspects and proposed definition were presented. Secondly, the proposed aspects and the proposed definition were discussed in subgroups. In these subgroup discussions, participants were free to add or exclude aspects and to change the proposed definition. During these subgroup discussions, participants were first asked to reach consensus in their subgroup on the aspects related to vulnerability and to write down their results. They then discussed the definition, with the proposed definition as the starting point. Lastly, the results of the subgroup discussions were discussed with all the participants until consensus was reached. Authors HT and JvR led this group discussion. Ethical approval Ethical approval was not needed because only consortium members were included in this study. All participants gave their consent before filling in both questionnaires. Findings Round one A flowchart of the results of the Delphi study was presented in Fig. 1. In order to identify aspects related to vulnerability, a literature search was carried out, and consortium members were asked to provide information. This led to 32 aspects that could be related
to vulnerability in the case of vulnerable pregnant women. These aspects included teenage pregnancies, advanced maternal age, insufficient coping skills, lack of adequate health insurance, living in a deprived neighbourhood, homeless or bad living situation. A total of 13 existing definitions were derived from literature. Four consortium members from different cities and four Dutch midwives used their own definition of vulnerable pregnant women. This resulted in a total of 21 existing definitions. Round two and three 25 of the 30 invited participants (83%) completed questionnaire I (round 2) and 27 of the 32 invited participants (82%) completed questionnaire II (round 3). Aspects related to vulnerability The percentage of participants who selected the various aspects in the two questionnaires, indicating that the aspect is indeed related to vulnerability, is presented in Table 1. Eleven aspects were selected by >70% of the participants in both questionnaires: homeless or bad living situation, substance abuse, teenage pregnancies, low income/financial problems/poverty, domestic violence, poor psychological health/psychopathology, lack of social support, psychosocial problems, low IQ/intellectual disability/learning disability, victim of sexual abuse, and refugees/immigrants. These are the proposed aspects that were discussed during the consensus meeting. Definitions of vulnerability The four definitions that were selected most often in both questionnaires were: • Vulnerable pregnant women are threatened by physical (biological), psychological, cognitive and/or social factors. The vulnerability can be existing prior to pregnancy or can emerge during the perinatal period. Being pregnant, giving birth and the transition to motherhood are triggers for vulnerability. The different factors that define their vulnerability result in barriers in the access to health care and in poorer health, in terms of maternal and neonatal morbidity and mortality (used by the consortium partners from Ghent). (64% of the participants selected this definition in round 1 and 89% selected this definition in round 2)
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J. Scheele, H.W. Harmsen van der Vliet–Torij and E.M. Wingelaar-Loomans et al. / Midwifery 86 (2020) 102708 Table 1 The percentage of participants who selected the various aspects in the two questionnaires, indicating that the aspect is indeed related to vulnerability. Aspect
% participants selected this aspect in survey round 1
% participants selected this aspect in survey round 2
Homeless or bad living situation∗ Substance abuse∗ Teenage pregnancies∗ Low income/financial problems/poverty∗ Domestic violence∗ Poor psychological health/psychopathology∗ Lack of social support∗ Psychosocial problems∗ Low IQ/intellectual disability/learning disability∗ Victim of sexual abuse∗ Refugees/Immigrants∗ Insufficient coping skills Lack of education Relationship/Marital problems Healthcare avoidance Low socioeconomic status Poor physical health Sex workers Living in deprived neighbourhood Unwanted pregnancy Poor health literacy Lack of employment/unemployment Lack of adequate health insurance/lack of resilience Knowledge (healthcare system) Single mother Small social network Minority group Poor personal care/hygiene Chronic illness Poor literacy Advanced maternal age Overweight
100% 100% 96% 96% 96% 96% 92% 92% 88% 88% 80% 88% 84% 84% 84% 80% 80% 80% 76% 72% 68% 68% 68% 64% 64% 56% 56% 56% 56% 56% 36% 36%
93% 96% 78% 89% 93% 89% 85% 85% 78% 70% 78% 59% 67% 48% 63% 63% 59% 59% 37% 48% 63% 37% 52% 33% 30% 33% 19% 44% 30% 44% 19% 11%
∗
>70% of the participants selected this aspect in the first and second questionnaire.
• Women are vulnerable when they experience ‘threat’ from a physical, psychological or social perspective, where ‘barriers’ and ‘reparative’ conditions influence level of vulnerability (Briscoe et al., 2016). (44% of the participants selected this definition in round 1 and 63% selected this definition in round 2) • A vulnerable pregnant woman is a woman who might have one or more problems on one or more criteria, such as poverty, coping skills related to pregnancy, health and wellbeing, access to health care, lifestyle, abuse and neglect, social network, the wish to have children, communication, experiences of previous pregnancies (used by the consortium partners from Antwerp). (40% of the participants selected this definition in round 1 and 63% selected this definition in round 2) • A vulnerable pregnant women is someone who is facing psychopathology, psychosocial problems, and/or substance abuse combined with lack of individual and/or social resources (low socioeconomic status, low educational level, limited social network) (Regional Perinatal Consortium South-West Netherlands) (32% of the participants selected this definition in round 1 and 52% selected this definition in round 2). The definition used by our consortium members from Ghent was selected most often and ranked the highest. This definition was therefore used as a framework to establish the proposed definition that was presented during the consensus meeting. Two modifications were made: (1) relevant aspects that should be part of the definition according to both questionnaires were added to the definition and (2) the first part of the definition was adapted indicating that it was a definition for vulnerable pregnant women. The proposed definition was: ‘A vulnerable pregnant woman is a woman who is threatened by physical (biological), psychological, cognitive and/or social factors, such as psychosocial problems, psychopathology, lack of social support or substance abuse. The vulner-
ability can be existing prior to pregnancy or can emerge during the perinatal period. Being pregnant, giving birth and the transition to motherhood are triggers for vulnerability. The different factors that define their vulnerability result in barriers in the access to health care and in poorer health, in terms of maternal and neonatal morbidity and mortality’. Round four 28 respondents participated in the consensus meeting; 8 practicing midwives, 6 midwifery students and 14 midwifery teachers and/or researchers. The participants came from the various cities: four from Antwerp, four from Ghent, three from Lisbon, three from Milan, three from Piła, seven from Rotterdam and four from Turku. We ensured that participants from different cities and different backgrounds (e.g. student, midwife, midwifery teacher, researcher) were split between the subgroups. Subgroup discussions and group discussions led to consensus in selecting the following aspects that were related to vulnerability: homeless or bad living situation, substance abuse, teenage pregnancies, low income/financial problems/poverty, domestic violence, psychopathology, lack of social support, low IQ/intellectual disability/learning disability, victim of sexual abuse, refugees, undocumented people, insufficient coping skills, health conditions affecting pregnancy. None of the aspects were included in the definition. The following mutual definition was established: A vulnerable pregnant woman is a woman who is threatened by physical, psychological, cognitive and/or social risk factors in combination with lack of adequate support and/or adequate coping skills. • Vulnerability can be existing prior to pregnancy or can emerge during pregnancy, childbirth and/or the postnatal period;
J. Scheele, H.W. Harmsen van der Vliet–Torij and E.M. Wingelaar-Loomans et al. / Midwifery 86 (2020) 102708
• Being pregnant, giving birth, being a mother and the transition to motherhood can be triggers for vulnerability; • Vulnerability may influence the whole family; • Vulnerability can emerge or be influenced by the cumulation of risk factors; • The different factors that define vulnerability result in (1) barriers in the access to health care and (2) poorer maternal and neonatal health status and wellbeing.
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Discussing the mutual definition and aspects that were related to vulnerability not only led to a mutual definition and aspects related to vulnerability, but also gave more insight into each other’s context and enabled the participants to get to know each other better, which are both important criteria for working together during the remainder of the consortium. In the remainder of the consortium, we will exchange knowledge and existing best practices between European midwifery practices and midwifery education and we will use this definition to specify the population of vulnerable pregnant women.
Discussion Conclusion A mutual definition of vulnerable pregnant women was established, and aspects related to vulnerability were selected as part of a joint consortium that aims to exchange knowledge and best practices between midwives throughout Europe. To our knowledge, literature describing a Delphi study to reach consensus about a definition for vulnerable pregnant women was not available, however our consortium partners from Antwerp did conduct interviews and a focus group discussion with the aim to develop a screening instrument for vulnerable pregnant women in which they asked for a definition about vulnerable pregnant women (Dehertogh et al., 2017). In addition, de Groot et al. (2019) used a Delphi method similar to the one in this study to establish a universal concept of vulnerability (de Groot et al., 2019). There were also other methods to establish a definition, such as a concept analysis of literature used by Briscoe et al., 2016, to establish their definition of vulnerability or a definition that is based on epidemiological concepts such as the definition of Aday et al., 1994. But the Delphi method used in our study included the opinions of all our consortium members, which made this approach very appropriate as a starting point for our consortium. Our study has some strengths and weaknesses. This definition of vulnerable pregnant women was specifically developed for our joint European research project. Only project members of our consortium were invited to participate in the Delphi study. This means that our new definition should be adopted with care by other research projects and perinatal practices. Actually, in every new starting project or cooperation, the development of a mutual definition is relevant. The approach that we used, the Delphi method, can be replicated in other projects with a similar goal. Our experience is that this approach leads to interesting discussions and is a valuable and fundamental tool at the start of a joint research project. Different project members participated in the various rounds. During the first survey round not all participating midwives were a member of the consortium and not all researchers, midwifery teachers and midwives were present during the consensus meeting. Students were only present during the consensus meeting. However, although participants differed slightly and our group was small, participation rates were very high. 83% of the invited participants completed questionnaire I and 82% completed questionnaire II. In addition, at least one researcher/teacher and at least one midwife from each city participated in every round. In all the rounds, all the consortium members were represented by the participants. With regard to the aspects that were identified as being related to vulnerability, we expected more consensus in the second questionnaire compared to the first questionnaire, but this was not the case. This could be explained by the fact that the second question in both questionnaires was ‘which aspects should be part of the definition’, and it was possible that, after completing the first questionnaire, the participant was more focused on the question whether the aspect should be part of the definition and that this knowledge influenced the answers of the participants in the second questionnaire.
For our European consortium, he following definition was established as a result of our Delphi study: “A vulnerable pregnant woman is a woman who is threatened by physical, psychological, cognitive and/or social risk factors in combination with lack of adequate support and/or adequate coping skills”. The following aspects were selected as being related to vulnerability: homeless or bad living situation, substance abuse, teenage pregnancies, low income/financial problems/poverty, domestic violence, psychopathology, lack of social support, low IQ/intellectual disability/learning disability, victim of sexual abuse, refugees, undocumented people, insufficient coping skills and health conditions affecting pregnancy. Establishing a mutual definition is crucial in order to start a research project if there is no generally accepted definition available in literature. Ethical approval Not Applicable Clinical trial registry and registration number Not applicable Funding sources This study was part of an European consortium project. This study and the consortium project was partially funded by SiA RAAK(project number RAAK.MKB07.015) Declaration of Competing interest Non declared CRediT authorship contribution statement J. Scheele: Conceptualization, Methodology, Validation, Formal analysis, Investigation, Data curation, Writing - original draft, Visualization, Funding acquisition. H.W. Harmsen van der Vliet–Torij: Conceptualization, Methodology, Validation, Investigation, Writing - review & editing, Supervision, Project administration, Funding acquisition. E.M. Wingelaar-Loomans: Conceptualization, Methodology, Writing - review & editing. M.J.B.M. Goumans: Conceptualization, Writing - review & editing, Supervision, Funding acquisition. Acknowledgments We would like to thank the participants; all the partners of the consortium project ‘Vulnerable pregnant women throughout Europe’ for their important contribution to the study. They made it possible to define vulnerable pregnant women and identify the aspects related to vulnerability. Also, we would like to thank our colleagues Enja Romeijn and Marlies Wagener for their effort during the different stages of the study.
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Supplementary materials Supplementary material associated with this article can be found, in the online version, at doi:10.1016/j.midw.2020.102708. References Aday, L.A., 1994. Health status of vulnerable populations. Annu. Rev. Public Health 15, 487–509. Bonsel, G.J., Birnie, E., Denktas, S., Poeran, J., Steegers, E.A.P., 2010. Signalementstudie zwangerschap en geboorte. Lijnen in De Perinatale Sterfte. Erasmus MC, Rotterdam. Briscoe, L., Lavender, T., McGowan, L., 2016. A concept analysis of women’s vulnerability during pregnancy, birth and the postnatal period. J. Adv. Nurs. 72 (10), 2330–2345 doi: 2310.1111/jan.13017. Epub 12016 Jun 13013. Cassar Flores, A., Marshall, S., Cordina, M., 2014. Use of the Delphi technique to determine safety features to be included in a neonatal and paediatric prescription chart. Int. J. Clin. Pharm. 36 (6), 1179–1189 doi: 1110.1007/s11096-11014-10014-y. Epub 12014 Oct 11014. de Graaf, J.P., Ravelli, A.C., de Haan, M.A., Steegers, E.A., Bonsel, G.J., 2013. Living in deprived urban districts increases perinatal health inequalities. J. Matern. Fetal. Neonatal. Med. 26 (5), 473–481.
de Groot, N., Bonsel, G.J., Birnie, E., Valentine, N.B., 2019. Towards a universal concept of vulnerability: broadening the evidence from the elderly to perinatal health using a Delphi approach. PLoS ONE 14 (2), e0212633 doi: 0212610.0211371/journal.pone.0212633. eCollection 0212019. Dehertogh, B., Meyvis, I., Vanceulebroek, V., Brouns, M., van Besauw, S., 2017. Afwegingen voor een prenataal screeningsinstrument voor kwetsbare zwangere vrouwen. Prenataal 2, 81–87. Flaskerud, J.H., Winslow, B.J., 1998. Conceptualizing vulnerable populations health-related research. Nurs. Res. 47 (2), 69–78. Harmsen van der Vliet–Torij, H. (2017). Een goed begin is het halve werk: verloskunde in de kern van preventie. lector, Hogeschool Rotterdam. Hasson, F., Keeney, S., McKenna, H., 20 0 0. Research guidelines for the Delphi survey technique. J. Adv. Nurs. 32 (4), 1008–1015. Hoogewys, A., 2012. A buddy near the crib: perinatal coaching for underprivileged families. Midwifery Today Int. Midwife 101, 60–61. Posthumus, A.G., Birnie, E., van Veen, M.J., Steegers, E.A., Bonsel, G.J., 2016. An antenatal prediction model for adverse birth outcomes in an urban population: the contribution of medical and non-medical risks. Midwifery 38, 78–86. Steegers, E.A., S. Denktas¸ , J.P. de Graaf and G.J. Bonsel, 2013 "Sociale verloskunde voorkomt armoedeval." Medisch Contact April.
Contents lists available at ScienceDirect
Midwifery journal homepage: www.elsevier.com/locate/midw
Defining vulnerability in European pregnant women, a Delphi study J. Scheele∗, H.W. Harmsen van der Vliet–Torij, E.M. Wingelaar-Loomans, M.J.B.M. Goumans a
Research Center Innovations in Care, Rotterdam University of Applied Sciences, Rochussenstraat 198, Rotterdam 3015 EK, the Netherlands
a r t i c l e
i n f o
Article history: Received 14 May 2019 Revised 12 March 2020 Accepted 23 March 2020
Keywords: Delphi study Definition Vulnerability Pregnant women Europe
a b s t r a c t Objective: Vulnerability among pregnant women is an important and complex theme in the everyday practice of midwives. Exchanging knowledge and best practices about vulnerability between midwives in Europe can contribute to improving the knowledge and skills of midwives and as a result improve the care for vulnerable pregnant women. We therefore start a consortium with midwives, midwifery teachers, researchers and students from organizations of seven European cities with the aim to exchange knowledge and best practices concerning vulnerable pregnant women between midwives. To be able to effectively exchange knowledge and best practices, our consortium started with this study focuses on establishing a mutual definition of vulnerable pregnant women. Therefore, the aim of this study is to develop a mutual definition of vulnerable pregnant women and to identify aspects related to vulnerability. Design: Delphi study with four rounds: (1) gathering existing knowledge from literature and definitions used by partners of the consortium, (2) and (3) two survey rounds and (4) an in-person consensus meeting. Setting: Consortium of midwives, midwifery teachers, researchers and students from Antwerp (Belgium), Ghent (Belgium), Turku (Finland), Milan (Italy), Piła (Poland), Lisbon (Portugal) and Rotterdam (The Netherlands) Participants: We included all consortium members in the Delphi study. Findings: Various aspects related to vulnerability and appropriate definitions were identified during the Delphi rounds. Consensus about the aspects related to vulnerability and the definition of vulnerable pregnant women was reached during the final consensus meeting. A vulnerable pregnant woman was defined as a woman who is threatened by physical, psychological, cognitive and/or social risk factors in combination with lack of adequate support and/or adequate coping skills. Key conclusion: We reached consensus about a mutual definition of vulnerable pregnant women and aspects related to vulnerability within this consortium. The Delphi approach led to interesting discussions and was a valuable method to define the concept of vulnerable pregnant women within our project . Implications for practice: In order to accomplish a project that aimed to improve care for vulnerable pregnant women it was important to first identify the population of vulnerable pregnant women with a mutual definition. © 2020 Elsevier Ltd. All rights reserved.
Introduction Vulnerability is an important risk factor for maternal and perinatal mortality and morbidity (Bonsel et al., 2010; de Graaf et al., 2013; Posthumus et al., 2016). Vulnerability is a broad and complex concept, in which both medical and non-medical; social and
∗
Corresponding author. E-mail addresses: [email protected] (J. Scheele), [email protected] (H.W. Harmsen van der Vliet–Torij), [email protected] (E.M. WingelaarLoomans), [email protected] (M.J.B.M. Goumans). https://doi.org/10.1016/j.midw.2020.102708 0266-6138/© 2020 Elsevier Ltd. All rights reserved.
other risk factors play an important role (Steegers et al., 2013; Harmsen van der Vliet – Torij, 2017). It is therefore a topic relevant for midwives, obstetricians, researchers and policy makers. Care for vulnerable pregnant women is challenging because of the different kinds of problems vulnerable pregnant women have to cope with, many of which require the support of different professionals (Steegers et al., 2013). Several initiatives have started throughout Europe to improve care for vulnerable pregnant women in order to reduce adverse pregnancy outcomes. Initiatives include screening lists for vulnerable pregnant women and buddy projects for vulnerable pregnant women (Hoogewys, 2012). Exchanging knowl-
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J. Scheele, H.W. Harmsen van der Vliet–Torij and E.M. Wingelaar-Loomans et al. / Midwifery 86 (2020) 102708
edge about these initiatives and other knowledge available can be valuable for midwives to help them improve their care for vulnerable pregnant women. A consortium is therefore formed with the aim to exchange knowledge and best practices about vulnerability during pregnancy between midwifery practices in a number of European cities. This consortium consists of midwifery teachers, researchers and midwives from organizations in various European cities: Antwerp (Belgium), Ghent (Belgium), Turku (Finland), Milan (Italy), Piła (Poland), Lisbon (Portugal) and Rotterdam (The Netherlands), who are all experts on the topic of vulnerable pregnant women. In order to effectively exchange knowledge and best practices it was important to define the concept of vulnerable pregnant women. Unfortunately, until now, there is no consensus on the definition of vulnerable pregnant women despite the fact that several definitions for vulnerability have been proposed in literature (Aday, 1994; Flaskerud et al., 1998; Briscoe et al., 2016). Some of these definitions are established for specific vulnerable populations, such as vulnerable pregnant women, but some definitions are global definitions of vulnerability. For example, the definition of Aday et al., 1994, could be used for different populations: ‘Vulnerable populations are populations at risk for poor physical, psychological, and/or social health’, whereas the definition of Briscoe et al., 2016, is more specific, defining vulnerability during pregnancy, birth and the postnatal period as: ‘Women are vulnerable when they experience ‘threat’ from a physical, psychological or social perspective, where ‘barriers’ and ‘reparative’ conditions influence the level of vulnerability’. In addition, some consortium partners formulated their own definition for vulnerable pregnant women. Because of the various definitions in use, it is important to formulate a mutual definition with all consortium partners before starting exchanging knowledge and best practices within the consortium. This mutual definition will define the concept of vulnerable pregnant women, prevent misconceptions and make it easier to communicate. In order to identify vulnerable pregnant women it is also important to identify aspects related to vulnerability. Therefore, the aim of this study is to develop a mutual definition of vulnerable pregnant women and to identify factors related to vulnerability. To this end, we perform a Delphi study. Methods Participants Because this study aimed to develop a mutual definition of vulnerable pregnant women among consortium members in order to effectively exchange knowledge and best practices, the Delphi panel consisted of all members of the consortium. This included researchers, midwifery teachers and midwives from the participating organizations in the following cities: Antwerp (Belgium), Ghent (Belgium), Turku (Finland), Milan (Italy), Piła (Poland), Lisbon (Portugal) and Rotterdam (The Netherlands). The participants varied slightly during the Delphi rounds, due to the availability and response of the consortium members. All participating consortium members were invited to complete both questionnaires. Some midwifes and students have joined the consortium at a later stage and therefore have not filled out the first or both questionnaires. Non-responders received several reminders and non-responders of the first questionnaire were also invited to complete the second questionnaire. The consensus meeting took place during the first live meeting of the consortium. For this meeting, one or two midwifery teachers and/or researchers, one or two midwives and one student were invited from each participating organization. When there were more consortium members, the consortium members from the different organizations decided themselves who joined the live meeting, which was mostly based
on availability and participation level. All participants of the live meeting joined the in-person consensus meeting. Study design and data analysis The design of this study is a Delphi study, because a Delphi study is an appropriate method to gain consensus among experts about a certain topic. This Delphi study consisted of four different rounds aimed at reaching consensus. Round one: overview of existing knowledge First, we identified (1) existing definitions of vulnerable pregnant women in literature and existing definitions used by the consortium members and (2) aspects that were related to vulnerability during pregnancy as described in literature and indicated by the consortium members. Literature was reviewed for existing definitions of vulnerable pregnant women or definitions of vulnerability that could also be applied to vulnerable pregnant women. All the various definitions and aspects were listed and used in round two. A previous literature search conducted by the research group was supplemented with a new search in PubMed (Harmsen van der Vliet – Torij, 2017). Pregnancy was used as MeSH term in combination with vulnerable or vulnerability in title/abstract. This search strategy was also combined with the search of definition or defin∗ in title/abstract. Round two: questionnaire I The information gathered in round one was used to create a questionnaire. Existing definitions and known aspects of vulnerability that were related to vulnerability during pregnancy were listed in the questionnaire. An extensive description of the literature search and the questionnaires is available on request. The questionnaire consisted of four questions: (1) A list of aspects (n = 32) related to vulnerability that were collected during round one. Respondents were asked whether, in their view, these aspects were indeed related to vulnerability. (2) Whether participants felt that the aspects selected in question one of the questionnaire should be part of the mutual definition of vulnerable pregnant women. (3) A list of existing definitions gathered in round one. Respondents were asked to select five definitions that they felt best described vulnerable pregnant women. (4) Respondents were asked to rank the five selected definitions indicating which definition is the most appropriate. This online questionnaire was created and sent with online surveytool LimeSurvey. Round three: questionnaire II In this round, the same questionnaire as in round two was sent to the participants, but the anonymous results of round two had now been incorporated into the questionnaire. Based on the results of round two, the order of the items was changed, starting with the item that was most frequently selected in the round two. Question one, containing the list of aspects that were related to vulnerability, now also included information about the percentage of participants that had selected the aspects in the second round. Question two, the question about whether the selected aspects should be included in the definition, also contained information about the percentage of participants that had indicated that the aspect should be part of the definition in the second round. Question three, with the list of existing definitions, also contained information about the percentage of participants that had selected the definition in round two. Question four, the ranking of existing definitions, also contained information about the percentage of participants that had ranked the definition first, second or third in the second round. Before the consensus meeting, a list of proposed aspects related to vulnerability and a proposed definition was created, based on
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Fig. 1. Flowchart of Delhi study.
the results of the questionnaires in rounds two and three. Proposed aspects related to vulnerability were all aspects that had been selected by ≥70% of the participants in both questionnaires. There is no agreement in literature about the cut-off levels for consensus in Delphi studies, but an agreement of ≥70% has been applied in various studies (Hasson et al., 20 0 0; Cassar Flores et al., 2014). The proposed definition was based on the definition that had been selected most often and ranked the highest in both questionnaires. Answers to the question ‘which aspects should be part of the definition’ from both questionnaires were used to add relevant aspects related to vulnerability to this definition, if necessary. Round four: consensus meeting A consensus meeting took place during an in-person meeting of the consortium (held on October 3rd 2018). First, the results of the first three rounds and the proposed aspects and proposed definition were presented. Secondly, the proposed aspects and the proposed definition were discussed in subgroups. In these subgroup discussions, participants were free to add or exclude aspects and to change the proposed definition. During these subgroup discussions, participants were first asked to reach consensus in their subgroup on the aspects related to vulnerability and to write down their results. They then discussed the definition, with the proposed definition as the starting point. Lastly, the results of the subgroup discussions were discussed with all the participants until consensus was reached. Authors HT and JvR led this group discussion. Ethical approval Ethical approval was not needed because only consortium members were included in this study. All participants gave their consent before filling in both questionnaires. Findings Round one A flowchart of the results of the Delphi study was presented in Fig. 1. In order to identify aspects related to vulnerability, a literature search was carried out, and consortium members were asked to provide information. This led to 32 aspects that could be related
to vulnerability in the case of vulnerable pregnant women. These aspects included teenage pregnancies, advanced maternal age, insufficient coping skills, lack of adequate health insurance, living in a deprived neighbourhood, homeless or bad living situation. A total of 13 existing definitions were derived from literature. Four consortium members from different cities and four Dutch midwives used their own definition of vulnerable pregnant women. This resulted in a total of 21 existing definitions. Round two and three 25 of the 30 invited participants (83%) completed questionnaire I (round 2) and 27 of the 32 invited participants (82%) completed questionnaire II (round 3). Aspects related to vulnerability The percentage of participants who selected the various aspects in the two questionnaires, indicating that the aspect is indeed related to vulnerability, is presented in Table 1. Eleven aspects were selected by >70% of the participants in both questionnaires: homeless or bad living situation, substance abuse, teenage pregnancies, low income/financial problems/poverty, domestic violence, poor psychological health/psychopathology, lack of social support, psychosocial problems, low IQ/intellectual disability/learning disability, victim of sexual abuse, and refugees/immigrants. These are the proposed aspects that were discussed during the consensus meeting. Definitions of vulnerability The four definitions that were selected most often in both questionnaires were: • Vulnerable pregnant women are threatened by physical (biological), psychological, cognitive and/or social factors. The vulnerability can be existing prior to pregnancy or can emerge during the perinatal period. Being pregnant, giving birth and the transition to motherhood are triggers for vulnerability. The different factors that define their vulnerability result in barriers in the access to health care and in poorer health, in terms of maternal and neonatal morbidity and mortality (used by the consortium partners from Ghent). (64% of the participants selected this definition in round 1 and 89% selected this definition in round 2)
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J. Scheele, H.W. Harmsen van der Vliet–Torij and E.M. Wingelaar-Loomans et al. / Midwifery 86 (2020) 102708 Table 1 The percentage of participants who selected the various aspects in the two questionnaires, indicating that the aspect is indeed related to vulnerability. Aspect
% participants selected this aspect in survey round 1
% participants selected this aspect in survey round 2
Homeless or bad living situation∗ Substance abuse∗ Teenage pregnancies∗ Low income/financial problems/poverty∗ Domestic violence∗ Poor psychological health/psychopathology∗ Lack of social support∗ Psychosocial problems∗ Low IQ/intellectual disability/learning disability∗ Victim of sexual abuse∗ Refugees/Immigrants∗ Insufficient coping skills Lack of education Relationship/Marital problems Healthcare avoidance Low socioeconomic status Poor physical health Sex workers Living in deprived neighbourhood Unwanted pregnancy Poor health literacy Lack of employment/unemployment Lack of adequate health insurance/lack of resilience Knowledge (healthcare system) Single mother Small social network Minority group Poor personal care/hygiene Chronic illness Poor literacy Advanced maternal age Overweight
100% 100% 96% 96% 96% 96% 92% 92% 88% 88% 80% 88% 84% 84% 84% 80% 80% 80% 76% 72% 68% 68% 68% 64% 64% 56% 56% 56% 56% 56% 36% 36%
93% 96% 78% 89% 93% 89% 85% 85% 78% 70% 78% 59% 67% 48% 63% 63% 59% 59% 37% 48% 63% 37% 52% 33% 30% 33% 19% 44% 30% 44% 19% 11%
∗
>70% of the participants selected this aspect in the first and second questionnaire.
• Women are vulnerable when they experience ‘threat’ from a physical, psychological or social perspective, where ‘barriers’ and ‘reparative’ conditions influence level of vulnerability (Briscoe et al., 2016). (44% of the participants selected this definition in round 1 and 63% selected this definition in round 2) • A vulnerable pregnant woman is a woman who might have one or more problems on one or more criteria, such as poverty, coping skills related to pregnancy, health and wellbeing, access to health care, lifestyle, abuse and neglect, social network, the wish to have children, communication, experiences of previous pregnancies (used by the consortium partners from Antwerp). (40% of the participants selected this definition in round 1 and 63% selected this definition in round 2) • A vulnerable pregnant women is someone who is facing psychopathology, psychosocial problems, and/or substance abuse combined with lack of individual and/or social resources (low socioeconomic status, low educational level, limited social network) (Regional Perinatal Consortium South-West Netherlands) (32% of the participants selected this definition in round 1 and 52% selected this definition in round 2). The definition used by our consortium members from Ghent was selected most often and ranked the highest. This definition was therefore used as a framework to establish the proposed definition that was presented during the consensus meeting. Two modifications were made: (1) relevant aspects that should be part of the definition according to both questionnaires were added to the definition and (2) the first part of the definition was adapted indicating that it was a definition for vulnerable pregnant women. The proposed definition was: ‘A vulnerable pregnant woman is a woman who is threatened by physical (biological), psychological, cognitive and/or social factors, such as psychosocial problems, psychopathology, lack of social support or substance abuse. The vulner-
ability can be existing prior to pregnancy or can emerge during the perinatal period. Being pregnant, giving birth and the transition to motherhood are triggers for vulnerability. The different factors that define their vulnerability result in barriers in the access to health care and in poorer health, in terms of maternal and neonatal morbidity and mortality’. Round four 28 respondents participated in the consensus meeting; 8 practicing midwives, 6 midwifery students and 14 midwifery teachers and/or researchers. The participants came from the various cities: four from Antwerp, four from Ghent, three from Lisbon, three from Milan, three from Piła, seven from Rotterdam and four from Turku. We ensured that participants from different cities and different backgrounds (e.g. student, midwife, midwifery teacher, researcher) were split between the subgroups. Subgroup discussions and group discussions led to consensus in selecting the following aspects that were related to vulnerability: homeless or bad living situation, substance abuse, teenage pregnancies, low income/financial problems/poverty, domestic violence, psychopathology, lack of social support, low IQ/intellectual disability/learning disability, victim of sexual abuse, refugees, undocumented people, insufficient coping skills, health conditions affecting pregnancy. None of the aspects were included in the definition. The following mutual definition was established: A vulnerable pregnant woman is a woman who is threatened by physical, psychological, cognitive and/or social risk factors in combination with lack of adequate support and/or adequate coping skills. • Vulnerability can be existing prior to pregnancy or can emerge during pregnancy, childbirth and/or the postnatal period;
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• Being pregnant, giving birth, being a mother and the transition to motherhood can be triggers for vulnerability; • Vulnerability may influence the whole family; • Vulnerability can emerge or be influenced by the cumulation of risk factors; • The different factors that define vulnerability result in (1) barriers in the access to health care and (2) poorer maternal and neonatal health status and wellbeing.
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Discussing the mutual definition and aspects that were related to vulnerability not only led to a mutual definition and aspects related to vulnerability, but also gave more insight into each other’s context and enabled the participants to get to know each other better, which are both important criteria for working together during the remainder of the consortium. In the remainder of the consortium, we will exchange knowledge and existing best practices between European midwifery practices and midwifery education and we will use this definition to specify the population of vulnerable pregnant women.
Discussion Conclusion A mutual definition of vulnerable pregnant women was established, and aspects related to vulnerability were selected as part of a joint consortium that aims to exchange knowledge and best practices between midwives throughout Europe. To our knowledge, literature describing a Delphi study to reach consensus about a definition for vulnerable pregnant women was not available, however our consortium partners from Antwerp did conduct interviews and a focus group discussion with the aim to develop a screening instrument for vulnerable pregnant women in which they asked for a definition about vulnerable pregnant women (Dehertogh et al., 2017). In addition, de Groot et al. (2019) used a Delphi method similar to the one in this study to establish a universal concept of vulnerability (de Groot et al., 2019). There were also other methods to establish a definition, such as a concept analysis of literature used by Briscoe et al., 2016, to establish their definition of vulnerability or a definition that is based on epidemiological concepts such as the definition of Aday et al., 1994. But the Delphi method used in our study included the opinions of all our consortium members, which made this approach very appropriate as a starting point for our consortium. Our study has some strengths and weaknesses. This definition of vulnerable pregnant women was specifically developed for our joint European research project. Only project members of our consortium were invited to participate in the Delphi study. This means that our new definition should be adopted with care by other research projects and perinatal practices. Actually, in every new starting project or cooperation, the development of a mutual definition is relevant. The approach that we used, the Delphi method, can be replicated in other projects with a similar goal. Our experience is that this approach leads to interesting discussions and is a valuable and fundamental tool at the start of a joint research project. Different project members participated in the various rounds. During the first survey round not all participating midwives were a member of the consortium and not all researchers, midwifery teachers and midwives were present during the consensus meeting. Students were only present during the consensus meeting. However, although participants differed slightly and our group was small, participation rates were very high. 83% of the invited participants completed questionnaire I and 82% completed questionnaire II. In addition, at least one researcher/teacher and at least one midwife from each city participated in every round. In all the rounds, all the consortium members were represented by the participants. With regard to the aspects that were identified as being related to vulnerability, we expected more consensus in the second questionnaire compared to the first questionnaire, but this was not the case. This could be explained by the fact that the second question in both questionnaires was ‘which aspects should be part of the definition’, and it was possible that, after completing the first questionnaire, the participant was more focused on the question whether the aspect should be part of the definition and that this knowledge influenced the answers of the participants in the second questionnaire.
For our European consortium, he following definition was established as a result of our Delphi study: “A vulnerable pregnant woman is a woman who is threatened by physical, psychological, cognitive and/or social risk factors in combination with lack of adequate support and/or adequate coping skills”. The following aspects were selected as being related to vulnerability: homeless or bad living situation, substance abuse, teenage pregnancies, low income/financial problems/poverty, domestic violence, psychopathology, lack of social support, low IQ/intellectual disability/learning disability, victim of sexual abuse, refugees, undocumented people, insufficient coping skills and health conditions affecting pregnancy. Establishing a mutual definition is crucial in order to start a research project if there is no generally accepted definition available in literature. Ethical approval Not Applicable Clinical trial registry and registration number Not applicable Funding sources This study was part of an European consortium project. This study and the consortium project was partially funded by SiA RAAK(project number RAAK.MKB07.015) Declaration of Competing interest Non declared CRediT authorship contribution statement J. Scheele: Conceptualization, Methodology, Validation, Formal analysis, Investigation, Data curation, Writing - original draft, Visualization, Funding acquisition. H.W. Harmsen van der Vliet–Torij: Conceptualization, Methodology, Validation, Investigation, Writing - review & editing, Supervision, Project administration, Funding acquisition. E.M. Wingelaar-Loomans: Conceptualization, Methodology, Writing - review & editing. M.J.B.M. Goumans: Conceptualization, Writing - review & editing, Supervision, Funding acquisition. Acknowledgments We would like to thank the participants; all the partners of the consortium project ‘Vulnerable pregnant women throughout Europe’ for their important contribution to the study. They made it possible to define vulnerable pregnant women and identify the aspects related to vulnerability. Also, we would like to thank our colleagues Enja Romeijn and Marlies Wagener for their effort during the different stages of the study.
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