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Discussion

Summary

The improvement work
The findings relating to staff and patient experiences identified many touch points. Staff touch points were organized into four main areas; the maternity ward and NICU collaboration, the stressful situation for staff, the stressful situation for parents and information. Patient touch points were organized into three main areas; stress, information and the baby. Touch points iden-tified by staff but not by patients concerned the maternity ward/NICU collaboration and the experiences of observing the stress patients are exposed to. The touch points identified by pa-tients that had not been perceived as touch points by staff emerged from the stories about the baby, the sudden experience of crowds of staff and the experiences of processing and reflecting at home. At the co-design group meeting, two improvement areas emerged as important to all participants and two separate co-design teams were formed. “The information team” was entirely consistent with the priorities identified by both staff and patients. “The follow-up/feedback team” emerged from the experience-based co-design process. A few other reflections during the improvement project are also worth mentioning. Attracting staff and patients to the improvement project proved to be a difficult and time-consuming task. In addition to this, capturing staff and patients’ experiences and identifying touch points through in-depth interviews and qualitative content analysis was also a time-consuming assignment for the improvement leader. In order to prepare staff and patients for the improvement work and make them under-stand their own role, the importance of providing repeated information about the EBCD approach, the improvement project and also feeding back to participants repeatedly was obvious. Some staff and patients had more time, energy and commitment than others, which af-fected the progress of the work in the improvement teams. In addition to this, there was a problem gathering all participants on meetings previously decided upon because of acute illnesses and high workloads. The co-design group meeting, which gathered staff and patients for the first time, turned out to be a key point for participants. Sharing touch points, selecting improvement areas and deciding next steps was crucial for the continuation of the improvement project, and participants who did not attend this meeting were likely to withdraw their participation. The results of the improvement work carried out jointly in co-design teams and from achieving closure of the improvement project are reported in Part 2.
The study of the improvement work
The introductory analysis of the experience questionnaires revealed most positive experiences of the improvement project participation so far. Both staff and patient participants stated generally happy, involved, safe, good and comfortable experiences following each event. Two themes emerged during the qualitative, problem-driven content analysis. For staff partici-pants the improvement project was a matter of learning within the microsystem through manag-ing practical issues, moving beyond assumptions of improvement work and gaining a new way of thinking. For patients, taking part of the improvement project was expressed as the experience of involvement in healthcare through participation and a sense of improving for the future. The results from the concluding questionnaire at the termination of the improvement project are reported in Part 2.

Relation to other studies

The improvement work Engaging staff and patients to the improvement project Attracting staff and patients to a co-design project can be difficult and time-consuming (Greenalgh et al., 2011), and so it also turned out to be in this case. Staff members of the existing maternity ward/NICU team in the setting, described in “local problem”, were initially invited to join the improvement project, but only three of them agreed to participate. The main reason for declining was their belief that participation would add to their overall workload, but there could be other unspoken reasons. Health professional attitudes differ according to individual ideolo-gies, circumstances and needs and because of this patient involvement may be limited (Fudge et al., 2008; Gagliardi et al., 2008). There might be a fear of involving patients, or an underestima-tion of what patients can contribute to the already existing professional knowledge. There might also be a perception that there is a lack of evidence for this kind of practice (Johnson et al., 2008). Staff participants were therefore mainly recruited from other employees in the maternity ward/NICU. Nevertheless, all participants were truly committed to the assignment. In the process of recruiting patients, their ability to participate coincided with personal issues as work, childcare commitments and travelling distances. Most parents invited were dedicated to the improvement project idea but regretfully it made no difference since they belong to an active, mid-life target group with a very limited amount of time. These reflections are consistent with previous research (Greenalgh et al., 2011). Preparing staff and patients for the improvement work In order to prepare staff and patients for the improvement work and make them understand their own role, the importance of providing repeated information about EBCD, the current improve-ment project and also feeding back to participants repeatedly was obvious. The EBCD approach was a new approach, and efforts to be clear and forthcoming were therefore welcomed by par-ticipants who expressed it as making them feel secure about what was expected of them as the project proceeded. The improvement project was visualized and explained with posters at each event, and current documents were distributed to participants continuously. Greenalgh et al. (2011) also emphasizes the importance of clear information and preparing staff and patients, helping them to develop realistic expectations of what can and can not be achieved. If staff do not understand or value the idea of co-designing with patients they might delay or even block development. Identifying touch points, selecting improvement areas and deciding next steps Furthermore, Greenalgh et al. (2011) stress the challenge of identifying problems, selecting im-provement areas and deciding next steps. Among other things, they alert the risk that patients may be unconsciously reluctant to identify service shortages in services on which they are de-pendent, unfamiliar with what is considered as “best practice” and unaware of alternatives avail-able. This was not considered difficult in the present improvement project. The objective of EBCD is about patients and staff experiences playing the major role in the process (Bate & Robert, 2006; Bate & Robert, 2007a; Bate, Mendel & Robert, 2008; Maher & Baxter, 2009), which was also the foundation of this improvement project. The process conditions were as equal as they could be for staff and patients from the beginning. The process of identifying touch points was transparently fed back to participants, staff and patients separately, and they were given the opportunity to correct, add and withdraw from the whole. Selecting improvement areas was smoothly done as they emerged from discussions at the co-design group meeting, and par-ticipants left the meeting with a general agreement in opinion. ”The information team” was en-tirely consistent with the priorities identified by both staff and patients, and “The follow-up/feedback team” emerged from the experience-based design process. The author of the study believes that as a whole, we stayed true to the EBCD core methodology throughout the project. However, challenges did occur at the point the improvement work in teams began. The co-design teams were coached by CB and the PDC, and during the first months three follow-up meetings were arranged to gather all co-design team members. Surprisingly, since two small departments where people know each other and collaborate daily were involved, it appeared teams needed time to get to know each other. In addition to this they were involved in a new situation with patients to relate to. Teams were occupied working out how to collaborate for some time. Ac-cording to Bate and Robert (2007a) patients and staff should be allowed space and time to talk about their experiences in the overall process, and moving too quickly to the co-design group stage might result in an unequal partnership. Reflections from this study may be that one co-design meeting is not enough to get the improvement work in teams going. More time with staff and patients invested at the beginning could be well invested time for the project as a whole, and frequent follow-up meetings in the beginning could be valuable. In addition, one of the mother-father couples was not as committed as the other because of work/childcare commitments and travelling distances. They also expressed in general positive experiences, which reduced their mo-tivation to prioritize face-to-face team work. Making involvement achievable and worthwhile is another challenge (Greenalgh et al., 2011). Patients have a positive attitude about being engaged in their healthcare, for example in safety issues, at a general level. But their level of comfort and intensions to act vary (Schwappach, 2010). In this project some staff and patients had more time, energy and commitment than oth-ers, which affected the progress of the work in the improvement teams. Patient engagement proved to be a key point for successful progress. One of the mother-father couples was not able to attend all meetings, making face-to-face meetings rare. To the improvement leader it was im-portant to be flexible so staff and patients could choose what they felt willing and able to do, which is also described by Davis et al. (2007), but at the same time push them gently to make progress in the improvement work. Staff attended the project during working hours, but no payment was given to patients. The only benefits for patients were refreshments and a personal belief of having something to contribute that would actually make a difference. According to Greenalgh et al. (2011) payment can be an important incentive for participation. For instance a substitution of travel expenses would have made involvement easier and more worthwhile for a greater number of parents. Achieving closure Reflections from the termination of the improvement project are discussed in Part 2. The study of the improvement work Learning within the microsystem (the overarching theme of the staff focus group inter-view) Not surprisingly, practical issues colour staff experiences much and these issues become a big obstacle to all attempts of planning the work in improvement teams. In general, staff in the healthcare sector always seems to be in a lack of time, making quality improvement only priori-tized when there is a little time to spare. In addition to this, working in delivery and maternity wards, and in NICU settings, is emergency care with working conditions shifting by the hour. Adding the fact that staff participants were working a three shift schedule made attempts to plan even more complex. At the start of the interview, these issues were lively addressed. There was also an invisible barrier in the organization because team members were working in two different departments. Though not spoken of, the boundaries were there, initially influencing the im-provement work in teams. But despite all the practical and organizational restraints, creating a safe, supportive and well-informed environment in the project contributed to good experiences of the improvement work for staff (Greenalgh et al., 2011). Creating this environment is one of the main tasks for the improvement leader. In line with the results of the case study of using an EBCD approach in a pilot study in England (Bate & Robert, 2007a), staff participants in this study confirmed that the patient participation throughout the project had been a key feature. Staff expressed the strong asset of continuous and direct communication with patients, making them feel they had moved beyond their assump-tions about the patients’ views and improvement work. They were convinced they were working on the correct improvements using the EBCD approach. Consistent with Greenalgh et al. (2011), staff expressed that patient experiences and stories can be invaluable teaching material, and that they were learning from patients. Patient experiences were not seen as a rival to other evidence base, but as an important complement to the whole picture. As many scientists claim, learning is a social action and interaction is essential to be able to learn (Argyris & Schön, 1978). Staff ex-pressed the necessity of face-to-face meetings with patients, experiencing that during these meet-ings important things would evolve. The institute for Family Centered Care and the Institute for Health Care Improvement have developed a report on patient-centred care (Johnson et al., 2008). The report highlights, among other things, that patients and families at a microsystem level should participate as full members of quality improvement and redesign teams, participating from the beginning in planning, implementing and evaluating change. The EBCD approach gives pa-tients and staff the opportunity to accomplish this, which was noticed and highly appreciated by participating staff in this study. Moreover, being involved in this improvement project had given staff a new mindset, a new way of thinking. By adding patients’ experiences, developing shared meanings and creating collective sense-making with patients (Bate & Robert, 2007a) they believed they had gained a new attitude in their daily work. Some of their new knowledge was considered explicit, other tacit. While ex-plicit knowledge is possible to store in a mechanical, technological or electronic way, for example the amount and variety of touch points and improvement outcomes, tacit knowledge is mostly stored only in human beings. This kind of knowledge is obtained by internal individual processes like experience and reflection, and can therefore not be managed and taught in the same manner as explicit knowledge. Approaches that encourage direct interaction, networking and action learn-ing that include face-to-face social interaction and practical experiences are more suitable for the sharing of tacit knowledge (Haldin-Herrgard, 2000). By staff participants, the tacit knowledge gained was on one hand considered in terms of the way it strengthened themselves in relation to patients and to each other. But on the other hand difficulties in managing and sharing the new knowledge to colleagues were frequently reflected upon. Bate and Robert (2007a) emphasizes the process of ongoing evaluation for learning, and this continuous cycle was also pointed out by staff as contributing to their new way of thinking. Related to this was the theory of the PDSA cycle as a method for continuous learning and action (Langley et al., 2009) that also was per-ceived giving new insights. In line with what Nelson et al. (2007) describes, staff meant that a successful redesign requires creating proper conditions for learning, improvement and account-ability at all levels of the organization. And as they furthermore reasoned, measurements and results must be reported both up and down the organization hierarchy making the responsibility for the development of the microsystem depend on accountability at all organizational levels.

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Experiencing involvement in healthcare (the overarching theme of the two mother-father couple in-depth interviews)

The various aspects of participation in the improvement project were of great concern to the parents. First of all, staff seemed to play an important role in engaging them and keeping them engaged throughout the improvement project. As Schwappach (2010) suggests, the involvement of patients (in safety) may be successful if, among other things, initiatives are based on their per-spectives. Parents in this study also clearly argued the great importance that they are placed at the centre of healthcare, although focus in this study was kept on experiences and not safety. The commitment and responsiveness of the staff and the improvement project leaders made them feel valuable which added relevance for participating. Second, and in line with staff views, parents also requested more parent and staff professional participants. They felt they needed a broader view which more parents and staff professionals would have been able to provide. Third, practi-cal issues were significant. These issues prevented families living at a distance from the hospital, where meetings were held, to prioritize the improvement work. Additionally, the fathers were not able to be equally and actively involved because of work commitments. In conclusion, patients who recently have become parents are very dedicated to improving healthcare, but practical is-sues complicate their participation. Patients want to share their story and they want to be involved in their healthcare. They want to know when things go right and be part of the solution when things go wrong. Several studies describe patients’ experiences of healthcare of which participation in a NICU context is of par-ticular focus here (Reis et al., 2009; Fegran et al., 2006; Greisen et al., 2009; Yee & Ross, 2006). Patients also want their care to be designed around them (Bate & Robert, 2007a). Parents partici-pating in this study felt that by sharing their story, they were improving for the future. By par-ticipating in this improvement project they were contributing to improved healthcare for other patients and for themselves in future healthcare situations. Bate and Robert (2007a) also empha-sizes the strong relationship that occurs between patients and staff to be one of the keys to suc-cess. This sense of community was also remarked upon consistently during staff and parent in-terviews in this study. Parents felt that they had obtained a common understanding with staff, and that this understanding had contributed to their own experiences. The Johnson et al. (2008) report outlines four concepts that include respect and dignity, information sharing, participation and collaboration. As mentioned earlier, additional recommendations in the report include mak-ing partnerships with patients and families an essential aspect of healthcare redesign and quality improvement. This study confirms that, at the experience level, healthcare should be provided respectfully, assuring a sincere sharing of useful information within the microsystem continu-ously, supporting and encouraging the equal participation of patients and staff. Parents can con-tribute to the EBCD process of gathering information about their experiences, analyzing and responding to collected data, and engaging themselves in improving the same. Furthermore, Schwappach (2010) suggests that the involvement of patients may be successful if their imple-mentation is based on serious efforts for cultural change in healthcare settings. This was also ar-gued by parent participants in this study. They were eager that the improvement work they were putting effort in should yield future results. Patient responsibility for the improvement work was perceived as one of the central characteristics of the EBCD approach in the Bate and Robert (2007a) study. Their reflections were that the process had given patients a greater sense of re-sponsibility for the work and its outcomes. This was not so obvious in this study. Parents were willing to contribute to future care, but as Davis et al. (2007) also reason, despite their participa-tion and commitment the responsibility of the improvement work was seen as mainly the respon-sibility of the healthcare professionals.

Introduction
Patient participation in improvement work
Patient experiences of participation in neonatal intensive care
Staff experiences of parent participation in neonatal intensive care
Local problem
Intended improvement
Study question
Methods
Ethical issues
Setting
Planning the intervention
September 2011
October 2011
November 2011
December 2011
January 2012
January – May 2012
Planning the study of the intervention
September 2011
October – May 2012
April – June 2012
Methods of evaluation
Data collection and analysis
The improvement work
The study of the improvement work
Results
Outcomes
The improvement work
The study of the improvement work
Discussion
Summary
The improvement work
The study of the improvement work
Relation to other studies
The improvement work
The study of the improvement work
Limitations
The improvement work
The study of the improvement work
Conclusions
Other information