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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