DOI: 10.31038/AWHC.2019215

Despite generally high prevalence of problems in sexual functioning in both men and women, the topic of sexual dysfunctioning remains an understudied phenomenon [1]. While traditionally, research focused on finding medicinal approaches to solve sexual dysfunctions (e.g. Viagra pills in erectile disorders), research increasingly started exploring psychological factors as well (e.g. sexual arousal [2]). To further attest to the relevance of psychological factors in etiological processes in sexual dysfunctions, most current psychological views consider sexual dysfunctions as the result of negative emotional responses following erotic stimulation. According to the Dual Control model [2], sexual dysfunctions may best be understood as a disturbance in the interaction between sexual excitatory and inhibitory processes. Negative emotional experiences could interfere with sexual excitatory processes and the generation of sufficient levels of sexual arousal, and render healthy sexual functioning problematic.

One negative emotion is disgust. Disgust is one of the basic human emotions and generally defined as: “revulsion at the prospect of (oral) incorporation of an offensive object.” [3]. Interestingly, disgust has a clear association with the sexual domain [4, 5]. Firstly, the function of disgust is to shield the individual from contamination with hazardous pathogens [6], so from an evolutionary perspective, disgust may also function to protect the individual against sexually transmitted diseases or to avoid sexual intercourse with partners with a strong genetic similarities (e.g., distant family) which could endanger the health of potential offspring. Secondly, sexual stimuli such as bodily fluids or contact with genitalia qualify as universally accepted disgust stimuli [3]. Further, research shows that sexual stimuli (such as pornographic imagery) can elicit disgust in healthy individuals [7, 8]. Indeed, recent research showed that disgust appraisals are significantly increased in some patients with sexual dysfunctions [9]. In sum, these findings suggest that there is a clear association between disgust and sexual (dys)functioning.

Recently, de Jong et al. [4] postulated the Give in or Get stuck Model on the interrelationship between disgust and arousal. The model suggests that experiences of disgust interfere with the generation of sexual excitatory processes, in particular, the generation of sexual arousal. While the generation of sexual arousal promotes approach behavior to a sex-relevant stimulus, disgust is to promote avoidance behavior towards the sex-relevant stimulus.

This likely disturbs the delicate balance between sexual excitatory and inhibitory processes. As disgust is a highly negative, aversive emotions, the sex-relevant stimulus could become associated with negative associations. This could create a dysfunctional feedback loop where (even the mere prospect of) future confrontations with that stimulus could already evoke negative emotions (e.g., disgust) and hinder effective sexual functioning.

As disgust is a highly negative, aversive emotion, the sex-relevant stimulus could become associated with negative associations, thus creating a dysfunctional feedback loop where (the prospect of) future confrontations with that stimulus could already evoke negative emotions and disturb the delicate balance between sexual excitatory and inhibitory processes.

Given that disgust and arousal seem important parts of healthy sexual functioning, treatment methods which focus on enhancing emotion regulation and/or arousal management, could be valuable in helping to restore the disturbed balance between excitatory and inhibitory processes. First, emotion regulation training could be a valuable treatment method. According to James Gross [10], emotion regulation entails “the processes by which we influence which emotions we have, when we have them, and how we experience and express them”. By using cognitive strategies (e.g., cognitive re-appraisal), participants could be trained to view their emotional experience from a different perspective. This could help them assign a different meaning to the negative emotional experiences which sex-relevant stimuli may hold for them, and help re-interpret negative disgust experiences into positive experiences. For example, a patient who learns to re-interpret a mild level of disgust as something normal to experience during the confrontation with sexual stimuli, is likely to avoid that disgust (inhibitory process) will become the predominant focus of attention during the sexual process.

A second method could be the use of biofeedback approaches. Disgust is associated with a strong reflective tendency [9]. This defensive reflex involves the contraction of pelvic musculature, which could consequently hamper sexual functioning and be responsible for creating various discomforts and negative experiences around sexual functioning (e.g., pain, stress, disgust). Biofeedback could help train patients in monitoring when pelvic floor muscles become tense or relaxed. Consequently, in some patient groups where the psychological factors could prove relatively important in the etiological processes of sexual dysfunctions [4, 9], biofeedback may even function as a tool which resembles exposure in vivo in this respect, whereby gradual exposure to the phobic stimuli and the emotions which are associated with them, allow the emotional response to be significantly reduced over time with repeated training.

A third method involves mindfulness. Mindfulness is derived from ancient Eastern traditions. However, when stripped from its philosophical and religious elements, mindfulness has established itself as a valid tool to help people manage psychological stress and improve their wellbeing [11]. Mindfulness involves teaching a series of emotion regulation and attention training techniques, which serve to help the individual to become more aware of their current state of emotions and cognitions. Such heightened awareness of emotional states could help prevent that these emotions unconsciously impact our behavior. In the context of sex-relevant stimuli, mindfulness could help train the patient to become aware of their attention towards negative emotions and thoughts surrounding the sex stimulus (inhibitory processes). Attention training could help people to shift away from these negative associations to the positive aspects of the sexual process (e.g. excitatory processes). Indeed, meta-analyses already revealed that mindfulness could be an efficacious treatment for female sexual dysfunctions [12].

In conclusion, disgust seems a highly interesting candidate to involve in the treatment of sexual dysfunctions. Based on the field of emotion research, several clinical tools can already be identified to explore and alleviate emotional disturbances in the process of sexual dysfunctioning, such as emotion regulation training, biofeedback or mindfulness. Future research should focus on the effectiveness of these interventions to examine whether they can be valuable additions to existing treatment programs.

References

1. Heiman J (2010) Sexual dysfunction: overview of prevalence, etiological factors, and treatments. The Journal of Sex Research 39: 73–78. [crossref]
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5. van Overveld M (2017) What to expect from sex? Contamination and harm relevant UCS-expectancy bias in individuals with high and low sexual complaints. Archives of Psychology 1: 1–13.
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DOI: 10.31038/AWHC.2019214

Abstract

Human rights defenders and especially those active for women’s rights are under increasing pressure and face persecution due to the international tendency to disregard human rights that is supported by a shift to trust authoritarian governments. The article draws attention to recent cases of women active as key experts in human rights and for women’s human rights and summarises risks and strategies in the relevant cases. The article is based on data received from the respective countries. Professional ethics demands a firm stance against human rights abuses, but strategies appear to be so far insufficient to adequately support and protect those women at risk because of their unwavering compliance with these principles.

Keywords

Trauma, Persecution, Gender, Human Rights, Doctors at Risk, Torture

Introduction

The atrocities committed during the Second World War have led to a general agreement on basic human rights, such as the freedom from torture, to be recognised as “non-derogable”, which means they cannot be suspended under any circumstances, including national emergencies. This has been confirmed also in basic contractual systems, such as in the EU Charter of Fundamental Rights [1], as EU members states had been exposed to some of the most extreme atrocities, and in “the International Covenant on Civil and Political Rights”[2], followed by a number of treaties and humanitarian standards by the UN and other organisations.

It is a frightening development, that human rights and respect for these standards are now openly questioned by leading politicians not only in autocratic countries  or dictatorships but also in European democracies, such as Austria, where the right wing party Minister of interrior has reportedly been summoned to the countries’  president as he proposed that the European Human Rights Convention might have to be disregarded and legal standards should „obey politics“ and not rule of law, though he later tried to play down his statements [3]  (note: In Austria most fundamental human rights are protected by the constitution and by international treaties the country has signed). Other examples are the disregard for the prohibition of torture in US Guantanamo or the treatment of asylum seekers in Australia [4], but also in some EU countries.

The implementation of the above standards needs effective strategies requires international monitoring and control or sanctioning mechanisms and institutions such as the International Criminal Courts, (who can only become active in countries who have signed the “Rome” statute), the European Court of Human Rights, the UN Committee against Torture, the UN special rapporteurs, and the High Commissioner on Human Rights. The principle of  “Universal Jurisdiction” offers the option of starting a criminal prosecution against perpetrators of fundamental violations also in third countries, where a survivor might seek protection [5].

Human Rights Defenders as health care professionals [6] as the third important group besides journalists and lawyers – in the respective countries play a crucial role in calling attention to infrictions and in supporting victims, which are with increasing frequency women.

Medical doctors have together with other groups taken a strong position in many countries, speaking up against torture or gender specific severe human rights violations such as FGM [7–9]. This is also due to the fact that professional ethics as supported by the World Medical Association and outlined in the WMA “Code of Ethics” do not only prohibits any support or participation in human rights violations [10–14], but also encourages health care professionals to speak out against such acts that do not only endanger rule of law and civil society, but also lead to long term adverse mental health consequences. Professional umbrella organisations such as the WMA and World Psychiatric Association have underlined the need of doctors especially in „dual obligation situations“ [15] when they are employed by governments to speak up even when violations are ordered by governmental institutions or their superiors, and further publications have taken up this issue in regard to Turkey [16–20]. Comments also stress the need to support such human rights defenders, due to the substantial danger resulting from such actions to the professional, but also their own lives, safety and health but also to that of their families and relatives [21]. While guidelines are strict, no sufficient mechanisms exist so far to offer adequate protection to those professionals, who follow their ethical standards. The UN have consequently confirmed the right to protection in the General Assembly Resolution A/RES/53/144 adopting the Declaration on human rights [22] that states specifically

Articles 1, 5, 6, 7, 8, 9, 11, 12 and 13 of the Declaration provide specific protections to human rights defenders, including the rights:

• To seek the protection and realization of human rights at the national and international levels;
• To conduct human rights work individually and in association with others;
• To form associations and non-governmental organizations;
• To meet or assemble peacefully;
• To seek, obtain, receive and hold information relating to human rights;
• To develop and discuss new human rights ideas and principles and to advocate their acceptance;
• To submit to governmental bodies and agencies and organizations concerned with public affairs criticism and proposals for improving their functioning and to draw attention to any aspect of their work that may impede the realization of human rights;
• To make complaints about official policies and acts relating to human rights and to have such complaints reviewed;
• To offer and provide professionally qualified legal assistance or other advice and assistance in defence of human rights;
• To attend public hearings, proceedings and trials in order to assess their compliance with national law and international human rights obligations;
• To unhindered access to and communication with non-governmental and intergovernmental organizations;
• To benefit from an effective remedy;
• To the lawful exercise of the occupation or profession of human rights defender;
• To effective protection under national law in reacting against or opposing, through peaceful means, acts or omissions attributable to the State that result in violations of human rights;
• To solicit, receive and utilize resources for the purpose of protecting human rights (including the receipt of funds from abroad).

Method

In the following article we explore recent cases of women active for human rights and especially women’s human rights that are health care professionals and the international support given (or not given) in each case.

Professor Sebnem Korur Fincanci, working originally as head of department of Forensic Medicine of Istanbul University, is one of the internationally most prominent experts in the forensic assessment of gross human rights violations, such as torture. She is co-author of the joint UN/WMA standard for the interdisciplinary documentation and investigation of torture and Inhuman and Degrading Treatment (“Istanbul Protocol”) [23]. She has participated in a number of important investigations, [24] including the UN lead investigation of mass graves in Srebrenica. She has been active in the peace movement and has been a trainer in the forensic documentation of human rights violations in many countries and projects.

The Turkish Medical Association and the Human Rights Foundation of Turkey (HRFT) that has close links to the Medical Association, and is led by former chairs of the Turkish Medical Association (TMA), have been active against the again increasing use of Torture [25,26] and gross human rights violations in the country [27–29] that have been observed and criticised by many international organisations including the EU, Amnesty International, Council of Europe CPT [30]  and the UN.

Women are frequently imprisoned together with their children and exposed to torture in Turkey, and suffer from special hardships such as exposure to sexual violence and to gender based problems during detention such as harassment and hygienic conditions [31] see also CPT report 2017 [30]. Both separation from children and joint detention under inadequate conditions or torture must be seen as especially traumatic for women.

Prof. Dr. Şebnem Korur Fincancı and the leadership of the TMA were imprisoned already as part of pre-trial detention in 2016, leading to international protests by many including the Austrian Medical Association, Amnesty International [32] , Amnesties network health professionals that supports human rights defenders [33]  and the World Medical Association, whose press release stated that “the WMA President Dr. Yoshitake Yokokura condemned the arrests and the threats of physical violence and the criminal complaint that has been made against the TMA.

‘The WMA fully supports our Turkish colleagues in their public statements that war is a public health problem. The WMA has clear policy that physicians and national medical associations should alert governments to the human consequence of warfare and armed conflicts. ‘The Turkish Medical Association has a duty to support human rights and peace and we are alarmed about the latest arrests and the criminal complaint. We strongly denounce these attacks on freedom of expression, which is enshrined in article 19 of the International Covenant on Civil and Political Rights that Turkey ratified in 2003.” [34]

At that time also World Psychiatric Association who strongly supports Human Rights and the Istanbul Protocol joined with a statement [35]  underlining that:

“We strongly denounce these attacks on the  freedom of expression of  our colleagues, freedoms  that are enshrined in article 19 of  the International Covenant on Civil and Political Rights ratified by Turkey in 2003.”

Shortly after these statements by WMA, WPA and local medical associations, the leaders of TMA were released, but the trial continued and the TMA leadership were sentenced by local courts with an appeal to the regional high court pending.

According to recent published reports by the HRFT HRFT President Prof. Dr. Şebnem Korur Fincancı was recently sentenced to 2 years 6 months imprisonment on a hearing held on December 19, 2018 in Istanbul, Turkey for signing the Peace Petition “We’ll not be a party to this crime!” in January 2016, Prof. Fincancı was being tried together with 542 other academics, with charges of “propagating for a terrorist organization”, in the scope of the„ Anti-Terror “Law.  She is the recipient of numerous Human Rights prices, including the German “Hessian Peace price”.

International statements were again published by PHR (https://phr.org/news/turkish-court-sentences-dr-sebnem-korur-fincanci-to-prison-on-false-charges) and the World Medical Association (WMA) [36] who stated that:

“WMA Chair Dr. Ardis Hoven said: ‘We are shocked at what is going on in Turkey. These physicians, along with many other doctors and health care workers, are being punished for supporting a petition calling on the Turkish government to stop the violence against civilians. These are just the latest examples of the Turkish authorities completely ignoring the most basic human rights by violating the right to free speech. The WMA has repeatedly called on the Turkish Government to call a halt to the appalling harassment of physicians and academics in Turkey following the failed coup in 2016’.

The WMA statement also noted that further women doctors active for human rights are endangered:

 “Former members of TMA’s boards, including Dr. Feride Aksu Tanik, a former Secretary General of TMA and official advisor to WMA, are facing trial or sentences on the same charges of supporting terrorism. Many of them have lost their jobs, had their passports cancelled and will never be able to work in public institutions.”

Further statements included one by the respected German Peace Research Institute “Hessische Stiftung Friedens- und Konfliktforschung (HSFK)”, at Hamburg University (IFSH) with the Bonn International Center for Conversion (BICC) https://idw-online.de/de/news708359, and a statement was passed by the Polish Bar Association, underlining interdisciplinary solidarity.

Also members of other professions are in danger, as for example the lawyer and human rights activist Eren Keskin, who is according to AI threatened by 40 different court cases [37], while women organisations are closed down [37].

At present it is difficult to seek international protection for Turkish human rights defenders, both due to the restrictions of granting passports and to increasingly restrictive asylum policies of most, including EU, countries.

Discussion

Limitations: Methodologically, it is challenging to get data on the specific situation of women as human rights defenders especially in authoritarian countries and totalitarian regimes due to the risks and inability to conduct research, any substantial research would potentially endanger both researchers and research subjects. The discussion must be based on well documented individual cases brought forward by independent entities, for example medical associations and by data available on public record. It appears justified to assume, that in other totalitarian regimes, larger numbers of less well published or supported human rights defenders have been persecuted, killed or imprisoned, but due to the persecution and risk to journalists and researchers that are equally at risk no reports or data have been published and case reports must be used to identify problems and discuss and later evaluate possible intervention models. Similar cases have been reported as in Egypt, where Prof. Aida El Dawla, a pioneer on women’s human rights and the fight against torture. She continues to support defenders of women’s rights such as bloggers in spite of the risks involved, and had been imprisoned for her outspoken position.

Conclusion

Women are under special danger if they defend women and patients against war or torture and similar gross human rights violations, and need special protection. Mechanisms are so far not sufficient in offering such protection, though international solidarity is strong. The „war on terror“ appears to be increasingly at risk to be abused against human rights defenders and women must be seen as being at a special risk to face imprisonment and torture.

Governments must be held accountable as also requested by the above United Nations declaration on human rights defenders, a point that must be seen as complimentary to the obligation of professionals as underlined in the WMA Ethics manual and the UN declarations article 11[38]. Universal Jurisdiction can be seen as a contribution if local Justice has been corrupted as part of totalitarian governments with disregard for human rights [5]. For first concrete steps, asylum (international protection) and a way to leave the country should be guaranteed to human rights defenders and international umbrella organisations and Universities should take all necessary steps to support them in respect for their willingness to risk their safety and live to protect women and other vulnerable groups against human rights violations.

Acknowledgement: We are grateful to the Turkish Medical Association members who have supplied data on the above case including summaries of court documents and Austrian Medical Association and to all those who take clear positions to support human rights defenders and women’s rights.

Abbreviations: TMA: Turkish Medical Association. WMA: World Medical Association, UN- United Nations, WPA: World Psychiatric Association

Funding Information: No funding was received by the authors from any side, government or party for this article. Open access was supported by the IERM institute of the University of Vienna.

References

1. http://www.europarl.europa.eu/charter/pdf/text_en.pdf
2. https://www.ohchr.org/en/professionalinterest/pages/ccpr.aspx
3. https://derstandard.at/2000097149277/Wie-Oesterreich-ohne-Menschenrechte-aussaehe,
4. den Otter J, Wenzel T, McGrath B, Osorio AL, Drozdek B (2018) Special Situations: Places of Immigrant Detention. An Uncertain Safety: Integrative Health Care for the 21st Century Refugees. T. Wenzel, Drozdek, B. New York, Springer: 283–299.
5. Wenzel T, Völkl- and S. Kernstock, Wittek, T.U., Baron, D. (2018). Identifying needs, vulnerabilities, and resources in refugee persons and groups An Uncertain Safety: Integrative Health Care for the 21st Century Refugees. T. Wenzel, Droszdek, B. New York, Springer: 51–99.
6. Kletecka-Pulker M, Fischer L, Wenzel T (2018) Handlungspflicht der Gesundheitsberufe nach dem Istanbul-Protokoll. J Med Gesundheitsrecht 3: 10.
7. Koso-thomas O (1995) Sierra Leone. Secret societies leaders are engaged in the fight against FGM. Newsl Inter Afr Comm Tradit Pract Affect Health Women Child 17: 13.
8. Mcwest C (1995) Empowering women: interventions. Nigeria: new law to end FGM. Afr Link [crossref]
9. No authors listed (2013) A united fight against FGM. Midwives 16: 13. [crossref]
10. No authors listed (1975) [General agreement on ethical declarations at the WMA general assembly in Tokyo]. Lakartidningen 72: 4808–4810. [Crossref]
11. No authors Listed (1998) [The declaration of the WMA condemning female genital mutilation (Budapest, 1993). World Medical Association]. Chirurgia (Bucur) 93: 279–280. [Crossref]
12. No authors Listed (1998) [The World Medical Association (WMA). The WMA declaration of Helsinki 1960 with recommendations on biomedical research on human subjects (modified in 1975, 1980 and 1989)]. Chirurgia (Bucur) 93: 138–140. [Crossref]
13. Holm S (2006) The WMA on medical ethics–some critical comments. J Med Ethics 32: 161–162. [crossref]
14. Yudkin JS, Ziv H, Menuchin I (2010) Medical complicity in torture. Time for WMA to take action. BMJ 341: 4105. [crossref]
15. Sheather J, Beynon R, Davies T, Abbasi K (2015) Torture and doctors’ dual obligation. BMJ 350: h589. [crossref]
16. Cilasun U (1991) Torture and the participation of doctors. J Med Ethics 17 Suppl: 21–22. [crossref]
17. Malmstrom C (1992) [An international symposium on torture reflected ethical problems of the host country]. Lakartidningen 89: 4222–4227. [crossref]
18. Iacopino V (1996) Turkish physicians coerced to conceal systematic torture. Lancet 348: 1500.
19. Iacopino V, M Heisler, S Pishevar and R H Kirschner (1996) Physician complicity in misrepresentation and omission of evidence of torture in postdetention medical examinations in Turkey. JAMA 276: 396–402.
20. Muñoz E (1996) Patient-physician confidentiality on trial in Turkey. JAMA 276: 1375–1376. [crossref]
21. Parsell D (1996) Doctors in Turkey face attacks. Science 273: 517. [crossref]
22. https://www.ohchr.org/en/issues/srhrdefenders/pages/declaration.aspx
23. Haagensen J O (2007) The role of the Istanbul-Protocol in the uphill battle for torture survivors being granted asylum in Europe and ensuring the perpetrators pay. Torture 17: 236–239.
24. Unuvar U, H Ulas and SK Fincanci (2014) Diagnosis of torture after 32 years: assessment of three alleged torture victims during the 1980 military coup in Turkey. Forensic Sci Int 244: 42–47.
25. Egholm ML (1988) [Amnesty International. Electric torture in Turkey]. Sygeplejersken 88: 10. [crossref]
26. Salinsky M (1998) Torture continues in Turkey: findings of new report. Lancet 352: 1854. [crossref]
27. Yüksel S (1989) Torture in Turkey. Lancet 2: 866. [crossref]
28. Yuzgun A (1993) Homosexuality and police terror in Turkey. J Homosex 24: 159–169. [crossref]
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33. http://amnesty-heilberufe.de/tag/aerzte-als-opfer
34. https://www.wma.net/news-post/arrest-of-turkish-medical-association-leaders-condemned-by-wma/
35. https://www.wpanet.org/uploads/Latest_News/Other_News/WPA%20Statement%20on%20TMA%20Arrests_2018.pdf
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37. AI report „Weathering the storm“, 2018, see www.amnesty.at/media
38. Article 11 makes a special reference to the responsibilities of persons exercising professions that can affect the human rights of others, and is especially relevant for police officers, lawyers, judges, etc.“, see again https://www.ohchr.org/en/issues/srhrdefenders/pages/declaration.aspx, accessed 31.1.2019

DOI: 10.31038/AWHC.2019213

Abstract

The World Health Organisation recommends exclusive breastfeeding for the first six months of an infant’s life. Low breastfeeding initiation and duration rates remain of concern internationally including Ireland. One strategy to address these rates is to involve women and their families in designing healthcare services that are more responsive to their needs. Research approaches which emphasise consumer participation are therefore needed. We discuss combining two participatory approaches; World Cafés and Experience-Based-Co-Design. These approaches facilitate consumer and healthcare provider participation in designing and researching healthcare services. We conclude that World Cafés are useful when combined with Experience-Based-Co-Design to identify the important issues for women, families and healthcare providers to design responsive services to support women to breastfeed.

Keywords

Breastfeeding, Experience-Based-Co-Design, Health Service Improvement, Participatory Research Designs, Public-Patient Involvement, World Café

Introduction

Participatory research approaches are needed to engage women, families, and healthcare providers to design healthcare services to better support women to breastfeed in the weeks and months after delivery. The World Health Organisation [WHO] [1] continues to recommend exclusive breastfeeding for the first six months of the infant’s life. However, sub-optimal initiation and duration rates of breastfeeding remain of concern in industrialised nations. [2] Report that in 2010 in the United States (US), 76.5 % of U.S. mothers initiated breastfeeding, but by six months this had fallen to 49 %. The reasons why women may not begin to breastfeed or may discontinue breastfeeding before six months are complex and multi-factorial [3]. The woman’s decision may be influenced by peers, family, community, and the wider culture which may or may not support them to breastfeed. Healthcare services can enable women to breastfeed but may also function as a barrier. Government policies and corporate pressures from the dairy industry for example to promote bottle feeding may also influence the woman’s decision [4, 5].

All these factors are evident in Ireland. By international comparisons, Irish breastfeeding rates are reported as one of the lowest for breastfeeding initiation (56.9%) and duration (falling to 38% by month three). This is in comparison to initiation rates of 90% in Australia, 81% in the United Kingdom, and 79% in the US [6]. Furthermore, in the Mid-West Region of Ireland, breastfeeding rates are below the Irish national average. In 2016, the Mid-West figure for exclusive breastfeeding at the first visit by the community nurses was 49.6% where the national target was 56%. Promotion, support, and protection of breastfeeding are therefore identified as a priority area for children’s health in Ireland [6]. As nurses and midwives in this Region, we wanted to understand why our rates were so low. We also wanted to find ways to engage women, their families and healthcare providers to review and to change if necessary aspects of service provision in this Region. To achieve this, we combined a World Café approach [7] with Experience-Based-Co-Design (EBCD) [8–10]. World Cafés facilitate meaningful and co-operative dialogue around questions that count, leading to collective thinking, identification of innovative solutions, and collective action [11]. In EBCD, experiences of the service are collected from relevant stakeholders and used as a platform to co-design often small but meaningful changes in practice. We used the World Café to identify the issues that were important to women, their families, nurses, midwives and other stakeholders, which could then be taken forward as an EBCD project.

Experience-Based-Co-Design

The idea of consumers of healthcare services contributing to service design in healthcare has been around since the 1970s [12]. Experience-Based-Co-Design (EBCD) is a participatory approach to service improvement where consumers, stakeholders, and relevant others share experiences of the service. Drawing on these experiences, usable solutions to improve the service are identified. Together, the stakeholders design a new version of the service [8–10]. EBCD as an approach has been used in six countries with over 60 different projects instigated [13]. [12], in a rapid evidence synthesis identified 11 papers reporting studies from five countries in a variety of practice settings. These included out-patient facilities, emergency departments, mental health services and intensive care settings.

The EBCD process is divided into eight stages [14]. The first, is observing clinical areas to gain an understanding of what is happening on a daily basis. The second and third are to interview staff, patients, and families to explore the issues of concern to them. These interviews are then edited into a 25 to 30-minute film. The fourth, fifth, and sixth stages are feedback sessions to all stakeholders. The film can be used to trigger the discussion with staff and then patients. Areas of the service that could be improved are identified and agreed. Stage seven, is running small co-design groups to work on the identified improvement with stage eight being a celebration event.

Experience-Based-Co-Design is considered a useful approach for encouraging collaborative working between consumers of healthcare services, family, and staff in complex healthcare environments [8–10]. E.B.C.D. offers an inclusive way to design better services through an explicit focus on consumer experiences. Using EBCD, the project team aims for better engagement with those who typically may not be invited to contribute to quality improvement work [15–17]. E.B.C.D. represents a radical reconceptualization of the role of consumers of healthcare services with a structured process to involve them throughout all stages of research and quality improvement cycles [12]. There is some evidence that the processes used such as involving staff, patients, and generating ideas for service improvement are beneficial. There is however, little evidence of robust evaluations of cost effectiveness, sustainability, and possible impact on patient outcomes [12].

EBCD begins then with observing clinical practice in order to gain an understanding of what is happening on a daily basis. This works well in a single ward or clinical unit in which the areas that need to be improved might be clear. However, in a complex practice issue such as promoting breastfeeding there are many matters to consider. The inter-disciplinary project team, including the nurses and midwives working in community and hospital settings in the Region, were aware of how complex the decision to breastfeed is for women. Before the project began, we needed to identify the issues of most importance to all stakeholders including women to decide what the EBCD project should focus on. Guidance on how to achieve this in complex practice issues was not always evident in the EBCD literature. A rapid appraisal of the issues was needed. This was achieved through holding a World Café event which invited regional and national stakeholders including women. Rather than the project team deciding on what the focus of the project should be, the focus would be decided by the stakeholders. It was decided to use a World Café because the participatory ethos of the World Café approach complements the participatory ethos of EBCD.

The World Café Event

The project team identified participants who might be interested in attending this free, event. These included local women and their families (fathers and other family members), educationalists, healthcare professionals (midwives, public health nurses, general practitioners, obstetricians, and neonatologists), voluntary support groups, and policy makers. Invitations were sent by the project team through healthcare and university networks and local support groups for women. There was no expectation that participants must attend, rather that they would be very welcome if they wished to. 43 invitations were sent with 30 in total participating. The event was guided by the seven design principles of a World Café [11].

The first principle is to clarify the context. The context in this project was to explore the low rates of breastfeeding initiation and duration in the Mid-West Region of Ireland and what might be possible ways to support women to breastfeed if they wish. The second principle is to create a hospitable environment. A spacious and private restaurant area on a university campus with good parking and space for childcare was used. Attention was paid to providing comfortable surroundings with regular rest and refreshment periods. The area was set up in a Café style, with round tables, a ‘menu’ of the activities for the morning, and flip chart paper acting as a ‘tablecloth’ to record the conversations. Each table had four to six people hosted by a facilitator who had experience and training in hosting Café events. There is some debate as to whether a facilitator is necessary or desirable when using World Cafés [18]. From a participatory perspective, participants can self-facilitate without the need for external control or direction. However, the topic of infant feeding can be a sensitive one. As there was a mix of breastfeeding and non-breastfeeding women attending, we wanted to ensure that all participants felt safe to discuss their views. It was agreed therefore that experienced facilitators should be table hosts. Participants also came and went as they pleased throughout the event and babies and children were welcome.

The third principle is to explore questions that matter and these consisted of two:

1. Why does the Mid-West region have the lowest recorded national breastfeeding initiation and duration rates?
2. What can be done to increase breastfeeding rates in the Mid-West region?

A Café host oversaw the overall running of the event, introduced the topic guide and aimed with the table facilitators to encourage all contributions, the third principle. There were four rounds of conversations. Rounds one and two were to discuss the two questions posed above. Round three, was to identify the priority issues participants thought were most important to them. These issues were collated by the project team and the whole group then voted for their top three priority issues. In round four, participants were back into small groups to discuss actions that could be taken locally to address the issues.

The fifth and sixth principles are cross pollination and connecting diverse perspectives and listening together for patterns and deeper insights. To achieve these principles, each round lasted for approximately 30 minutes with notes and drawings made by participants on the paper tablecloths. The table host also kept a detailed written record of the conversations. Participants could change tables after each round, with the table host briefing them on the previous discussions.

The seventh and final principle is to harvest and share collective discoveries. Harvesting is collecting all the notes that are made during the Café. After round three, all the notes were summarised and collated by a university research team guided by the principles of thematic analysis [19]. This resulted in a list of priority issues. As a whole group, the participants anonymously voted for their top three priority issues. After collation of all votes, three final priorities were identified. To promote further sharing, all the material was summarised and compiled after the Café into a report and sent to all participants as a record of the event.

This harvesting process provided some answers to the two questions posed in round one. The reasons why breastfeeding rates were low in this Region reflected the complexities described by [3]. Broadly, these were a perceived lack of professional and family support for women, and that breastfeeding was not seen as the norm in this Region. To improve breastfeeding rates, the groups suggested, (a) that women and their families need to be better supported, (b) education about breastfeeding to the wider community including schoolchildren was also required and (c) some specific areas identified for improvement in the local hospital and community health service provision. From these three, the main priority identified by the participants was the need for intensive support of women in the first 48 hours after discharge from hospital. What intensive support might actually mean in practice in this region needed further clarification before it could be taken forward to the EBCD project. A further workshop with the same stakeholders was then convened to explore what intensive support entailed and how it might be offered.

Discussion

Engagement of consumers of healthcare services as partners in identifying health research and service improvement priorities is claimed to lead to optimisation in the design and delivery of a more patient-centred health service [18–20]. World Cafés can be used to generate the questions and issues important to all participants and lay the foundations for participatory action research strategies [21]. Using a World Café with EBCD was a useful strategy for consumers of healthcare, staff, and other stakeholders to identify their research and service priorities. It provided a forum to facilitate collaborative engagement with heterogeneous groups regarding health service and research prioritisation [18]. Exploring questions of importance together, also appeared to facilitate an examination of their own views surrounding breastfeeding and compare these to other stakeholders [22]. The World Café event allowed the participants to explore a complex issue such as breastfeeding and identify their priority areas for this region. The participants at the World Café clearly indicated that support for women and their families was their priority. Indeed, the ideas generated from the World Café to support women to breastfeed were comparable to a recent Cochrane systematic review findings in supporting women to breastfeed [3]. As the need for support was clearly identified, the project team could then make that their single focus in the EBCD phase.

Conclusion

Meaningful engagement and involvement of women, their families, healthcare providers and policy makers can be effective to develop services and identify research priorities. Using a World Café approach prior to an Experience-Based-Co-Design project, allowed a variety of stakeholders to meet, actively share their experiences and perspectives, and identified priority action points for practice and research. The World Café format has potential to be very useful when linked to Experience-Based-Co-Design to engage stakeholders in identifying their priority areas for health research and service improvement.

Acknowledgement

The authors acknowledge funding from the Nursing and Midwifery Planning and Development Unit HSE West/Mid-West, Ireland and would like to thank all who participated in the World Café event and members of the project group.

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