Ethical challenges, responses and reasoning in co-creation for health promotion: a scoping review

Abstract

Background

People involved in co-creation act as embedded moral agents as they bear a relational responsibility. The approaches taken or decisions made by individuals when facing ethical challenges during co-creation have important ethical ramifications for the process. Literature in the field of co-creation lacks an in-depth and systematic exploration of individual responses and reasoning that shape ethical decision-making. The current scoping review aims to identify authors’ responses and related moral reasoning as reported within the academic literature, to the ethical challenges encountered during co-creation for health promotion.

Methods

A scoping review was conducted to identify articles that reflected on ethical challenges encountered during co-creation. Fifteen scientific articles were included following the title, abstract and full-text screening. Subsequently, a qualitative interpretative analysis was performed to extract and link the following data items: ethical challenge, response and (moral) reasoning. The resulting coding schemes, consultation with ethicists and researcher memos contributed to the synthesis of the results.

Results

Integrating discussions throughout co-creation in combination with adopting a flexible attitude and communicating expectations were frequently reported responses. Institutional procedures and pragmatic considerations influenced responses greatly. Moral reasoning was partly shaped by principles of co-creation, normative ethical frameworks and, personal moral codes, values and perceptions.

Conclusions

Academic authors' responses to ethical challenges in co-creation were largely influenced by their intention or willingness to adhere to the principles of research integrity within this context. Ethical frameworks like the ethics of care and public health ethics provided guidance, though some authors did not explicitly engage with these frameworks, suggesting a disconnect between theory and practice. An extensive description of authors’ moral reasoning remains absent. Future research might consider performing meta-ethnographies to account for more detailed information about moral reasoning in responding to ethically challenging situations in co-creation for health promotion.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12910-025-01345-8.

Background

Co-creation as an approach is grounded in the fundamental principle of meaningfully engaging relevant individuals and groups in the process of knowledge production and solution building in the creation of inclusive opportunities for health improvement [1, 2]. Co-creation can be performed by using a range of methodologies as reported in the literature, including participatory research (PR), participatory health research (PHR), participatory action research (PAR), community-based participatory research (CBPR), co-production, and co-design [1, 3–6]. Attempts to fully encapsulate the concept of co-creation have thus far not resulted in a unified definition. However, co-creation can be broadly defined as any act of collective creativity that involves a range of relevant and affected actors in creative problem-solving that aims to produce a desired outcome [7]. Within health promotion specifically, this includes the development of collaborative public health interventions by academics working alongside other stakeholders [3].

People involved in co-creation, such as academics, citizens, community partners and public health professionals, bear a relational responsibility crucial to the quality and outcomes of their collaborative effort [8]. They act as embedded moral agents, as their values, perceptions, thoughts and commitments shape the moral framework of the process, including the decisions made during ethically challenging situations [9, 10]. This relational and moral embeddedness is distinctive to co-creation, differing significantly from clinical studies, which have varying goals, methodologies, and degrees of involvement.

The approaches taken or decisions made by individuals when facing ethical challenges during the co-creation have important ethical ramifications, as the risk of choosing ‘wrongly’ is always present [9]. Previous studies have listed ethical challenges that may arise as distinctively bound to the interactional nature of co-creation. Examples are challenges related to tensions from conflicting beliefs, expectations and assumptions between academics and non-academics community partners [9, 11], issues related to group representation, and challenges related to accepting experience-based knowledge of non-academic partners [12]. It is during such challenges that the ethical competences of those involved in the co-creation are being put to the test [9].

Ethical competence is defined as the ability to recognize the ethical dimension of an actual challenge, to make a moral judgment with regards to the challenge, to engage in a process of moral reasoning and to respond appropriately [9, 13]. This competence is shaped by several factors at individual, group and organizational levels including one’s personality, intentions and value orientations, the existence of professional codes of (ethical) conduct, the ethical climate or culture at work, and rewards and sanctions acted out by organizations [14, 15]. As an example, the existence of established bio-ethical guidelines [16] and strong institutional bodies within clinical research contribute to the assessment and monitoring of ethical practice of such research – thereby nurturing ethical competence.

Within co-creation however, such established ‘tools’ for nurturing ethical competence are less well-developed. This may be partly explained by the fact that co-creation is more prone to adapt to population- and purpose specific circumstances and needs during the process [17]. In recent years, several institutional resources in the form of ethical guidelines have been developed that contribute to the ethical competence of predominantly academic partners in the co-creation [18]. However, from the existing literature, in-depth knowledge regarding the individual responses and reasoning leading up to this ethical competence remains absent.

Engaging in a process of moral reasoning and responding appropriately to ethical challenges is a key feature of ethical competence. In this regard, understanding the responses and related reasoning adopted during ethical challenges may provide knowledge regarding factors shaping ethical decision-making, including diverse sets of values and world views that those involved in the co-creation hold. Additionally, it enhances insight into the ethical competencies that are needed when doing co-creation and may assist the ethical review process of Institutional Review Boards (IRBs) or Research Ethics Committees (RECs) when assessing future applications in co-creation. The current scoping review aims to identify authors’ responses and related reasoning associated with the ethical challenges encountered during co-creation for health promotion as reported within the academic literature. Together with recent efforts on institutional levels, the current study aims to strengthen the practice of such research by exploring the factors shaping ethical decision-making during everyday research practices [10]. The following research questions are formulated to this end:

1. What ethical challenges during co-creation for health promotion were reported in the scientific literature?

2. What responses to ethical challenges during co-creation for health promotion were reported in the scientific literature?

3. What moral reasoning (abbreviated hereafter as ‘reasoning’) underlying or substantiating responses to ethical challenges were reported in the scientific literature?

Methods

A scoping review methodology was adopted to address the research questions. Scoping reviews can be undertaken as stand-alone projects in their own right, especially where an area is complex or has not been reviewed comprehensively before [19]. Our main objective for undertaking this scoping review was to examine the extent, range and types of ethical decision-making during ethical challenges within co-creation, and to identify research gaps in the existing literature. The current scoping review was reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR) [20], and registered in the Open Science Framework (OSF) through an Open-Ended Registration (10.17605/OSF.IO/ZYVBJ). In the following paragraphs, a chronological description will be provided on the steps undertaken.

Article search and eligibility

The population, concept and context (PCC) framework, which is recommended as a guide to construct clear and meaningful objectives and eligibility criteria for a scoping review [20], was used to set up the initial article search. The population included anyone involved in the co-creation (including non-academics), the concept included ethical challenges and the context included co-creation for health promotion. Empirical articles were searched that described original data regarding ethical challenges that emerged during the co-creation process. Only (peer-reviewed) articles in English were included as we wanted to ensure that our interpretations of the search terms and key concepts across articles were as consistent as possible to achieve an accurate comparison of the data. The search based on the PCC framework was adopted after extensive deliberation with several co-authors (SB, MG, TA, BD, MV). Additionally, it was reviewed by an information specialist (MK) of the Knowledge Center for Health Ghent, and then adapted, optimized and finalized by RC. Three databases were searched: MEDLINE (via the PubMed interface), CINAHL (via the EBSCOhost interface) and the Co-Creation DataBase (CCDB). The CCDB is a newly developed database that groups scientific references on co-creation and was produced as part of the Marie Skłodowska-Curie Innovative Training Network of Health CASCADE [7]. The databases were selected because of their orientation to domains relevant to our research questions, such as life sciences, health, biomedical sciences, and co-creation. Articles were included when published between January 2013 and December 2023, as indicators demonstrate that the literature on co-creation has expanded significantly in both volume and impact over the past decade [21]. The search was adapted to each database following the unique syntax rules. Additional file 1 presents the full electronic search strategy performed in MEDLINE on March 27, 2023.

Selection of articles

Articles were selected through a three-step procedure: (a) title and abstract screening, (b) general full-text screening based on pre-set eligibility criteria, and (c) specialised full-text screening based on in-depth reading by ethics experts. The output from the separate database searches, containing title and abstract information, were uploaded in Rayyan [22] to start the (a) title and abstract screening. A set of eligibility criteria was independently pilot-tested by MV and RC after which the following final criteria were set: the scientific article 1) contains original empirical data describing the experiences of people involved in the co-creation at first hand; 2) explicitly refers to any type of co-creation directed at health promotion; 3) is not theoretically oriented or prescriptive in its aims (i.e. protocols, reviews, frameworks, policy papers, code of conduct, professional communication, institutional procedures); 4) mentions 'ethic*' (including word variants) in title and/or abstract, to maintain a feasible number of articles to screen and to increase the likelihood of including articles that mainly described responses and reasoning within the context of an actual ethical challenge. The title and abstract screening was independently performed by RC and QL/GL. The full-text screening was conducted in two rounds (b, c). During the first round (a), RC and JB/GL independently selected articles based on the pre-set eligibility criteria. Disagreements were resolved among RC, JB and GL. In a second round (b), the remaining relevant articles were independently read by RC and two co-authors with expertise in ethics (SB/FF), to decide to what extent the reported responses and related reasoning displayed ethical or moral reflections and whether the responses and related reasoning were reported within the context of an actual ethical challenge.

Synthesis of results

The following information was extracted by RC from the included articles: study aim, study justification or motivation, country and population, type of co-creation, research team, study procedures and guiding normative frameworks. The included articles were further analyzed by RC and three ethics experts (FF, SB and KR) by independently extracting the following data items: 1) ethical challenges, 2) responses and 3) moral reasoning. Explicit mentioning of an ethical challenge or the use of terms such as ‘ethical issues’, ‘moral challenges’, ‘moral dilemmas’, ‘values’, ‘good’, ‘bad’, ‘right’ and ‘wrong’, served as an indicator for extracting the data as such [23], whereas the extraction of the ethical responses and reasoning was mainly based on interpretation. However, to enable some form of consistency, responses were explained as the actual actions to overcome the ethical challenge, and moral reasoning as the (reasoned) argumentation, motivations, justifications or thought processes for adopting that response. A preliminary codebook of the ethical challenges (RQ 1) was developed by FF, SB, KR and RC. Subsequently, RC performed an interpretative qualitative analysis [24] for RQ 2 and 3 by deductively coding the responses and moral reasoning through a vertical analysis (one article at a time), linking the three data items based on the description in the articles. Coding schemes for all three data items were finalized following the analysis. Additionally, RC kept memos throughout the coding process that included reflections on specific sentences, associations, challenges and questions. The memos served as an important basis for further specifying the linkages between the three data items.

Results

Figure 1 presents the PRISMA flow diagram of the screening procedures. The title and abstract screening took place between April and May 2023. The full-text screening took place from July to October 2023. In total, 15 studies were included in the analyses that reported on the ethical challenges encountered during co-creation, while describing the decision-making processes as adopted by the authors.

Fig. 1.

PRISMA flow diagram

Descriptive information

Table 1 provides descriptive information of the included articles (see Appendix II for the complete overview). The studies were conducted in a range of different countries, although more studies from Canada and the UK were included (four each). Different methodologies were referred to in the articles, with community-based participatory research (CBPR) the most commonly reported one. Health promotion purposes differed between articles. A common thread was the intention or aim to engage those affected by the health issue in formulating or instigating points for improvements in the delivery of inclusive healthcare. Examples are the enablement of children with educational needs to decide together about their lives with regards to education, health and social care [32], improving psychiatric emergency care service delivery through integrating experience-based knowledge [12], and improving the engagement of individuals in hospitals who are usually the most affected by health issues but often disadvantaged to participate as a result of health-related limitations [35]. Most authors on the included articles were academic researchers, except for two articles [12, 33] that included a non-academic co-researcher as a co-author. Although the remaining articles were written by academic co-researchers, the experiences of non-academic co-researchers about the process were included in the results through summarizing or quoting. The articles adopted different terms to refer to the role of people involved in the co-creation. Terms such as participants, community members, and stakeholders were often used as the articles were mainly written from the perspective of academic researchers. Further, non-academic co-researchers’ contribution was sometimes credited in the acknowledgement section of the academic article. The methods and form of the co-creation differed greatly per study, with some studies applying an intensive process of multiple years [25] and others conducting a few workshops with different non-academic co-researchers [35]. Two studies did not specify the procedures of the co-creation [26, 27].

Table 1.

Descriptive information of included articles (see: Additional file II)

No	Author(s)	Year	Country and population	Adopted methodology	Explicit reference to normative (ethical) framework
1 [25]	Davison et al	2012	Jamaica Nurses treating people with HIV/AIDS	Community-based participatory research	Relational public health ethics framework; Relational ethics
2 [26]	Bainbridge et al	2013	Australia Aboriginal Australians living remotely with end-stage renal disease	Community-based participatory research	Ethical principles from the Australian National Statement on Ethical Conduct in Human Research (HMRC)
3 [27]	Rink et al	2013	Greenland Indigenous Arctic communities	Community-based participatory research	Code of Ethics
4 [28]	Pyles	2015	Haiti Inhabitants of post-earthquake Haiti	Participatory action research	McTaggart’s four key components of PAR
5 [29]	Fraser et al	2016	Canada Children of Aboriginal and Inuit communities at risk of being placed in welfare services	Community-based participatory research	Criteria of trustworthiness in naturalistic settings
6 [30]	Strike et al	2016	Canada People with HIV and addiction issues	Community-based participatory research	Not reported
7 [31]	Canosa et al	2018	Australia Young residents of Byron Shire	Participatory research	Ethical Research Involving Children (ERIC)
8 [32]	Brady & Franklin	2019	United Kingdom Children and young people with special educational needs or disability	Participatory research	United Nations Convention on the Rights of Persons with Disabilities; Social model of disability
9 [33]	Mann & Hung	2019	Canada People with dementia	Appreciative action research	Appreciative Inquiry Approach; Banks’ ‘everyday ethics in community-based participatory research’
10 [34]	Buffel	2019	United Kingdom Older adults	Peer-research, co-research	Not reported
11 [12]	Groot et al	2020	Netherlands Mental health care service users	Participatory health research	Ethics of care
12 [35]	Kirk et al	2020	Denmark Older medical patients	Co-design	Not reported
13 [36]	Haarmans et al	2021	United Kingdom Ethnic minority people with severe mental illness	Participatory action research	Ethics of care
14 [37]	Thoft et al	2021	United Kingdom, Denmark People with dementia	Collaborative research, qualitative participatory methodology	Ethics of care
15 [38]	Thulien et al	2022	Canada Urban youth using drugs	Community-based participatory research	Roots of CBPR; Ethical frameworks advanced by Indigenous and feminist scholars; United Nations Declaration on the Rights of the Child

 Ethical challenges, responses and moral reasoning

Six domains could be distinguished in which ethical challenges took place. These were: common vision (1), emotion management (2), equitable relations (3), managing expectations (4), meaningful engagement (5) and institutional procedures (6). Additional file III provides a descriptive overview of the ethical challenges per domain as described by the authors. The ethical challenges will be described briefly per domain to provide context for the adopted responses and related moral reasoning. Table 2 provides a narrative summary of the responses and related reasoning to the ethical challenges that were described in the included articles. To enhance readability, a selection of responses and related reasoning was made for each domain of ethical challenges. Moreover, the descriptions as provided in the original articles were retained as much as possible. In Additional file IV, a full description of the linkages between the ethical challenge, response and related reasoning can be found. In the following paragraphs, the review findings for each research question will be summarized. Here, non-academic individuals involved in the co-creation will be referred to as ‘co-researchers’.

Table 2.

Narrative summary of adopted responses and related moral reasoning (see Additional file IV for the full description, including the ethical challenges)

Ethical challenge domain	Response(s) to ethical challenge(s)	Related moral reasoning
Common vision (1)	Involving community researchers [26]	Strengthening local capacity and employing community researchers [26]
	Spending time together, with no expectations and a positive atmosphere [29]	Establishing group efficiency through shared decision-making, conflict resolution and problem solving [29]
	Requesting more time to include all perspectives [12]	Epistemic diversity needs to be respected [12]
	Conceptualizing participation from a child perspective and coming to a shared understanding [30]	Respecting and recognizing children’s status and voice [30]
Emotion management (2)	Providing space for sharing personal reflections, thoughts and emotions (check-ins) [36]	Adopting an ethic of care consistent with PAR and feminist methods [36]
	Making time for discussions to address issues of injustice [32]	It was their right to be informed about and being aware of the issues (of injustice) [32]
	Recognizing the limits of safety and accepting messiness [38]	Fostering group safety [38]
	Altering the design of the project [30]	Balancing confidentiality through respecting clients’ wishes and establishing trust [30]
Equitable relations (3)	Open communication with participants and use of language, understanding the research setting, encouraging participation and ownership of the process [37]	Using an ethics of care model and reflecting on how to mitigate power in developing research relationships [37]
	Researchers had to give up control and accept stakeholder-based (experiential) knowledge as just as important as evidence-based knowledge [35]	Intention to give the participants (co-researchers) a strong voice [35]
	Retaining existing terminology as chosen by academic researchers despite disagreement of co-researchers [36]	Intention to deconstruct power relations, but this was prevented due to internalization of hierarchies [36]
	Include women in the conversations that were dominated by men [28]	Intention or willingness to challenge the patriarchal cultural norms [28]
Managing expectations (4)	Promoting shared leadership must include a parallel commitment to producing tangible research outputs and meaningful change [38]	Respecting young people’s knowledge, expertise, time, and energy [38]
	Having conversations with the co-creators around payment [32]	Understanding what constitutes ‘respect’ and ‘justice’ in research involving young people [22], [26]
	Managing and communicating expectations; thinking about the end at the beginning; planning an exit strategy and process for closure; and not over-promising [32]	It was crucial that we all trusted each other [32]
	Discussions on safety and violence, equipping co-creators to respond, paying close attention to the nature of conversations [31]	Progressing sensitively and reflexively in response to potentially harmful discussions. Study was designed to be child-centered, rights-based and empowering [31]
Meaningful engagement (5)	Having discussions about what it means for the various partners to work together on a CBPR health project, including discussions about time expectations [27]	To honor and integrate the diversity of perspectives and expertise of the Greenlandic community [27]
	Opportunities were presented for the new team to discuss issues of research relevance with community leaders [26]	Adopting community-based participatory research (CBPR) principles of experiential approach, adopting an ethics of care and a responsibility towards the community to move forward in a more participatory way [26]
	Accepting that some disagreements may never be fully resolved [38]	Acknowledging the diverse positionalities that shape guiding principles on how to work together [38]
	Being committed to working for beneficial outcomes [33]	Reducing the stigma of dementia and promoting social justice. Risk and benefit is subjective and depends on people’s values and beliefs [38]
Institutional procedures (6)	Give (sufficient) time needed to fill in forms and for community members to complete training about institutional review board process [28]	Providing training helped to deepen knowledge about the subject and enabled a more inclusive collaboration [28]
	Principal investigator made final decisions on modifications [27]	Ethical considerations were raised about how to honor community input when it was contrary to IRB policy [27]
	The informed consent was reviewed with each research participant [27]	Upholding confidentiality and privacy of research participants [27]
	Ensuring that any ‘risk’ described was always contextualized, based on a situation or circumstance [32]	Respecting youth autonomy [32]

RQ1: ethical challenges

Ethical challenges with regards to creating a common vision (domain 1) were related to valuing experience-based knowledge, epistemic diversity (i.e. differences in knowledge, approaches, perspectives) and divergent visions. For example, some authors reported doubts about accepting co-researchers’ experience-based knowledge as it was at odds with evidence-based knowledge on which the design, implementation and evaluation of interventions is normally based [35]. Ethical challenges in emotion management (domain 2) were related to dealing with emotions, uneasy interactions, triggering experiences, emotional impact and overburdening of co-researchers. For example, raising awareness about structures of oppression and discriminations resulted in painful emotions as co-researchers recognized these structures [32], and intergenerational trauma impacted interpersonal relations [29] during the research. Ethical challenges in creating equitable relations (domain 3) included difficulties in establishing shared decision-making across community members because of deeply rooted power structures that influenced interpersonal relations. To illustrate, academic co-researchers found it challenging to give up full control of the research process as they strove to work collaboratively [35]. Ethical challenges in managing expectations (domain 4) were related to anticipating uncertain courses of events and communicating insecurities regarding the research outcomes, duration and impact. These included balancing the needs and expectations of co-researchers and that of (institutional) ethical review boards [37], exposing young co-researchers to negative research evidence [32] and managing different expectations between academic and non-academic co-researchers. Ethical challenges related to establishing meaningful engagement (domain 5) include co-researchers who do not feel represented during the co-creation [12], incorporating co-researchers’ desires, and establishing true consent and engagement. Examples of challenges related to this domain are co-researchers who withdraw due to this lack of representation [26]. Ethical challenges related to institutional procedures include (domain 6) university risk assessments were often perceived as stigmatizing [32], and were found to be embedded in social and economic inequalities connected to racialized and stigmatized identities [36].

RQ2: responses

The articles reported a variety of responses adopted by academic co-researchers. These were deployed to alleviate or overcome the negative consequences as a result of ethical challenges experienced throughout the research. The most frequently used response was having discussions and conversations with academic researchers and co researchers from the community, to gain insight into different perspectives with the intention of coming to an agreement [27]. However, decision-making by consensus was not always fruitful as some disagreements may never be fully resolved [38]. Negotiating and reconciling co-researchers’ needs with project aims often initiated by academics, nevertheless formed the basis for a variety of changes that have been implemented in the research design, research methodologies, and the tools being used [26, 30, 37]. Adopting flexibility as a result of doing co-creation was mentioned often, including having flexible meeting routines, developing a flexible understanding of how partnerships should be put into practice [38] and giving time for processes to unfold [29]. Communicating openly about project aims, expectations and changes was perceived as key to a successful project [32]. Additionally, authors mentioned having individual conversations with co-researchers to clarify ethical issues, and mentioned “reflecting regularly on practice in terms of ethics” as helpful [30, 37]. As academic researchers sometimes struggled with being culturally sensitive and were challenged by issues that they were not familiar with, they needed help of a cultural broker who helped developing hindsight and recognizing cultural differences [26]. Spending time with co-researchers (in an informal way) prior to and during the process was needed for building trust [29]. Academic researchers attempted to accommodate the needs of the co-researchers overall, for example, by allowing for epistemological diversity. However, sometimes their dominance over the research project was expressed as they decided on the wording on the final report [12] and retained controversial terminology despite co-researchers disagreeing and used their position to mitigate some of the challenges faced by institutional review boards in favor of the community [27]. Further, time allowed for some of the encountered difficulties to ‘heal’ [12] and authors mentioned remaining positive and seeking opportunities despite some of the ethical challenges being persistent [26].

RQ3: moral reasoning

A range of motivations, justifications, values and principles has been reported as part of academic researchers’ moral reasoning for the adopted responses. They often felt a duty and responsibility to protect co-researchers rights, anonymity, safety, confidentiality and group dynamics (see Table 2). As a consequence of adopting co-creation, many academic researchers mentioned striving to adhere to related principles of promoting social change and social justice, inclusivity, equality, fairness, democracy, empowerment, and being sensitive to co-researchers’ context, beliefs and experiences. Values such as transparency, honesty, respect, trust and empathy were often referred to. Academic researchers mentioned their response being inspired by their own moral codes, values and perceptions – as their positionality came into play [30] – of how to give care and supports to co-researchers [37]. Moreover, a constantly balancing exercise between harms and benefits and honoring community decisions and input was mentioned throughout [27]. Several ethical frameworks (see Table 1) were reported as a source of inspiration to prioritize the wellbeing of co-researchers. Most articles explicitly referenced an ethical framework and some referred to ethical theories as guiding their studies. Two articles referred to ethical principles of community-based participatory research (CBPR) or participatory action research (PAR) [28, 38], while others referred to an unspecified relational public health ethics framework [25] or the establishment of a code of ethics [27]. Human rights conventions [32, 38] and international statements on ethical conduct were also reported [26, 31]. The ethics of care was mentioned twice [12, 37].

Discussion

The aim of this scoping review was to identify and analyze the responses and moral reasoning related to ethical challenges faced by people involved in co-creation for health promotion as reported within the academic literature. A variety of responses to ethical challenges were identified, of which the following were most frequently reported: integrating discussions throughout the co-creation, adopting a flexible attitude and communicating expectations. Institutional procedures and pragmatic considerations influenced responses greatly. Authors’ moral reasoning was partly shaped by principles of co-creation, normative ethical frameworks and personal moral codes, values and perceptions. The willingness to adhere to the (ethical) principles of co-creation – such as honoring community and participant input, inclusivity and building a safe environment – were reported, alongside the duty and responsibility that academic researchers felt in acting ethically during the research process. Some ethical frameworks, including the ethics of care and public health ethics, were reported as providing ethical guidance. Authors also reported following their personal moral codes, values and perceptions in acting ethically.

A common thread in the responses was the effort that academic researchers made to build an authentic rapport with co-researchers. Academic researchers typically seemed to be aware of the adaptive nature of the approach, (e.g. co-creation) while working towards health improvement with the co-researchers as they are constantly trying to make compromises, be flexible in their approach and adapt to the co-researchers’ circumstances and needs as much as possible within the limits of institutional procedures and project resources [36, 38].

The co-creation trajectory, which was often initiated by the academic researchers, was experienced differently by co-researchers. Uncomfortable interactions occurred as a result of different expectations. There were instances in which it took time and effort to build trust [29]. Further, academic researchers had to prove that they were ‘humans with emotions’ [31]. Different expectations of the trajectory showed up when co-researchers thought the research to be what they referred to as a mere ‘quick occasion’ [26], which refers to the co-researchers’ expectation that the research would take one or two meetings instead of being a longer term commitment.

Paradoxically, although academic researchers appear to put substantial effort in reducing any type of friction that may result from the way in which their expert status is perceived by the co-researchers, and are ‘desiring to reduce power relations’ [36], hierarchical structures remain present. This becomes clear in parts of the articles where the academic researchers often eventually made the decisive call in the shared-decision making process when consensus was lacking or when resources were limited. An example is when researchers decided on the final wording of the research report because of time constraints, despite other suggestions from the co-researchers [12].

A possible explanation for the upholding of this hierarchy is that academic researchers feel ultimately responsible for the course of the trajectory of the co-creation and on-time delivery of the scientific outcomes, and that they have difficulties in giving up full decision-making control [35]. Based on our analysis of the results, it seems that these hierarchies are deeply rooted in academic research as the academic co-researcher is often the one with financial resources [28], and the one having to comply with institutional procedures and therefore required to make pragmatic choices [36]. It is therefore challenging to change these hierarchies without also changing the structural and systemic ways in which academia produces scientific outputs [39].

Authors reported on the existence of dissenting epistemologies [26], and at the same time stressed the importance of respecting epistemic diversity [12]. For example, Aboriginal people and other Australians had different views regarding asking hard questions about death and dying [26], something that the academic researchers were initially not aware of. Further, several articles revealed a strong emphasis on the notions of ‘power’ and ‘power structures’. Academic researchers may co-creation use their power to make certain decisions, while on the other hand they pronounce their intention to ‘reduce power’ during the co-creation. For example, some authors appeared to exert power by voicing their intention to challenge existing ‘patriarchal norms’, seemingly assuming a dominant presence of such norms [28].

Additionally, some articles responded to ethical challenges in ways that sensitized participants to think in a certain direction. This is illustrated by ‘attempts to carefully manage young co-creators’ reactions to our (academic researchers’) action of introducing the idea of rights and the social model of disability’ [32]. Also, some community co-researchers were not aware of their rights to partake, or not, in research [26]. Reflexivity and awareness of positionality can help to examine and address power differentials in research partnerships [40]. It might be worthwhile to consider the knowledge systems and modes of thinking that define and address power and power imbalances in this regard [40] – as this may strongly shape the course of the co-creation. To ensure epistemic diversity, it might be worthwhile to include various modes of thinking in defining and shaping power within co-creation.

Authors referred to explicit ethical frameworks in their articles, such as the ethics of care, to substantiate their argument for adopting a certain response. However, it is unclear from the articles whether these value orientations and guiding principles were consciously and actively used as a basis for responding to certain ethical challenges or functioned merely as a theoretical post-rationalization. Authors did not provide a detailed account of their moral reasoning nor did they specify how this reasoning was shaping their responses in situ. Some authors came to realize that despite their commitment to adhering to certain guiding principles, understanding of these principles varied due to ‘diverse positionalities, life circumstances, perspectives, and convictions of each person on the research team’ [38]. The extent to which these positionalities outweighed the more theoretically oriented guiding principles in authors’ responses during ethical challenges, remains unclear from the articles.

Values that authors mentioned showed great overlap with established principles of co-creation [4], such as inclusivity, and evidenced the general acquaintance of these principles by authors conducting such research. Further, some articles did not refer to explicit ethical frameworks or theories. However, they referred to some of these principles while responding to ethical challenges, as in the case of wanting to take care of the co-researchers – which may be linked to the ethics of care [27, 34].

Methodological limitations

The extraction of responses and reasoning in relation to the ethical challenges as reported in the articles was a rather complicated and lengthy process, as the authors of the included articles used both explicit and implicit formulations to reflect and deliberate on the ethical challenges they encountered during their co-creation. As we anticipated there was a high probability of articles being implicit in their reporting on ethical responses and reasoning, we made the pragmatic choice of only including articles that explicitly referred to ethics in their titles or abstracts. As a consequence of this pragmatic strategy, we might have excluded relevant articles.

Authors’ reports concerning their moral reasoning process was often found incomplete, mainly because the specific argumentation of why a certain response to an ethical challenge was perceived as ethically defensible rather than not defensible, was often lacking. This complicated our understanding in authors’ ethical decision-making when facing ethical challenges during the co-creation. Thorough moral reasoning is often achieved through reflective equilibrium [41], a time-consuming method to reach a fully informed, balanced and coherent position concerning specific ethical questions. The lack of specific argumentation suggests that this approach to ethical decision-making was not adopted during the research or in the reporting of ethical challenges. Relatedly, responses and reasoning were difficult to distinguish as the actual response was sometimes described as a value or principle that needed to be upheld, rather than an action that resulted in a direct change of the situation. This may have contributed to a limited understanding of the ethical decision-making process.

Another limitation might be that particularly Western universities (especially from Canada and the UK) engaged in the co-creation. This may have influenced the co-creation as the social, political, and academic contexts in these countries may approach the co-creation with different expectations, institutional support, or community dynamics compared to other countries, in other parts of the world.

The articles that were included offered mostly insight into authors’ (often academic researchers) actual responses to an ethical challenge they experienced at first hand. Additionally, some authors offered more detailed retrospective reflections on the ethical challenges they faced [12, 29] and recommended a desired response for similar situations in the future. The ethical challenges voiced in the articles were often about situations that were anticipated and less about situations that required instant reactions. Further, we deliberately chose the term response rather than ‘solution’ to acknowledge the fact that there may be various ethically defensible responses to any given ethical challenge [42].

We encountered some difficulties in defining and coding what would constitute an ethical challenge, and what could alternatively be framed as a procedural mismatch or methodological shortcoming of the study, rather than an ethical challenge arising during the co-creation. Such difficulties are a common issue within the field of applied ethics, as multiple sources point out that defining an ethical issue or challenge is subject to different interpretations and may vary between contexts [23, 43]. After taking these nuances on board, we managed to identify ethical challenges as formulated by the researchers in their academic articles, without making further value judgements about the extent to which each one constituted a ‘true’ ethical challenge. This may be considered a limitation as we did not use a replicable framework to define what constitutes an ethical challenge within co-creation.

Future recommendations

The current study shows the complexities that come with applying co-creation and provides additional insights into the decision-making processes, or lack thereof, underlying the responses of those involved in co-creation. As requirements communicated by IRB/REC shaped the decision-making of authors greatly, we recommend IRBs/RECs should take these complexities into account as co-creation is being more widely adopted [21, 43], and should actively search for befitting forms to assess the ethical soundness of the co-creation proposed. We suggest that IRBs/RECs request from academic researchers who engage in co-creation that they (a) examine to what extent co-researchers are aware of the goals, intentions and commitments that come with their involvement in the co-creation and whether they agree to form a collaboration with the academic researchers based on this awareness, (b) assess, before embarking on co-creation, to what extent the diverse positionalities, life circumstances, perspectives, and convictions of the individuals involved in the co-research may collide and potentially form an obstacle to ethical conduct, and (c) assess to what extent their ethical views are fundamentally different from that of co-researchers regarding specific issues that are central to the co-creation, and may therefore prevent inclusive collaboration. Useful guidance in this respect is given in the International Collaboration for Participatory Health Research (ICPHR) Position Paper on ethical principles and practice [18]. Further, as our methodology has proven challenging for identifying authors’ responses and reasoning to ethical challenges, we recommend future research exploring ethical decision-making processes within co-creation to consider the use of meta-ethnographies [44]. Meta-ethnography is a systematic and context-sensitive approach which synthesizes data from multiple studies and incorporates academic authors’ perspectives in the analysis, enabling new insights into experiences and perspectives and important theoretical and conceptual contributions [45]. It is hereby recommended to include the perspectives of non-academic co-researchers when facing ethical challenges during co-creation.

Conclusion

The aim of the current scoping review was to provide an in-depth exploration of the responses and related moral reasoning applied to ethical challenges within co-creation as reported within the scientific literature. The findings suggest that academic authors' responses to ethical challenges in co-creation are largely influenced by their intention or willingness to adhere to the principles of research integrity within this context. In most cases, their responses included some form of dialogue, which is a key aspect of conducting co-creation. The current study further suggests that, in the practice of co-creation, pragmatic considerations related to project resources and institutional guidelines may shape authors’ responses more strongly than personal moral codes, values and perceptions. Ethical frameworks based on the ethics of care and public health ethics provided guidance, though some authors did not explicitly engage with these frameworks, suggesting a disconnect between theory and practice. As an extensive description of authors’ moral reasoning is not present in the academic articles, it is difficult to identify or evaluate transparency and consistency in moral reasoning. Based on this scoping study, it is recommended that further in-depth meta-ethnographic research might offer insights int moral reasoning in co-creation. On a practical level, IRBs and RECs might require further information from co-creation to raise awareness of researchers of potential ethical challenges.

Abbreviations

IRB

Institutional Review Board (see other abbreviations)

PR

Participatory Research

PHR

Participatory Health Research (PHR)

PAR

Participatory Action Research

CBPR

Community-based participatory research

Authors’ contributions

The study was designed by RC and MV with significant contributions from BD and TA. SB, MG and MK contributed to the conceptualization of the study in the early study phases. GL, QL and RC performed the title and abstract screening. GL, JB, RC, FF and SB performed the full-text screening. FF, SB, KG and RC performed the data-analysis. FF, SB and KG contributed significantly through sharing ethical considerations throughout the data-analysis phase. RC wrote the manuscript. All authors provided critical feedback on the manuscript drafts. All authors approved the final version for submission.

Funding

Health CASCADE, a European Union’s Horizon 2020 Research and Innovation Programme under the Marie Skłodowska-Curie grant agreement n° 956501.

Data availability

The complete dataset as stored in MAXQDA 24 is available from the first author (RC) upon reasonable request.

Declarations

Ethics approval and consent to participate

Not applicable.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.