Participatory curriculum development for health and independent living for disabled people: a qualitative study of participant experiences

Abstract

Participatory curriculum development is an approach that draws on participatory research philosophy by engaging members of intended audiences in the curriculum development process. This is a fairly new approach to curriculum development, which has seldom been applied in health promotion and, to our knowledge, has not previously been used to develop curriculum with disabled people. In this project, participatory curriculum development was used to both develop a new curriculum and revise an existing curriculum for in-person, web-based delivery. We engaged in this process with Center for Independent Living staff members, twelve of whom we interviewed post-engagement. We assessed the development process for equitable engagement and sharing of power and identified three relevant main themes: learning, collaborating, and empowering. Our project partners engaged collaboratively in project development and believed the curriculums would empower their intended end-users. However, they desired greater sharing of power during the process to create an equitable experience.

Introduction

From both an ethical and practical perspective, research on disability is best conducted with the active participation of disabled people. Given the historical and contemporary disparities experienced by disabled people (United Nations 2008; Krahn, Walker, and Correa-De-Araujo 2015; Ordway et al. 2021; Burns et al. 2021), sharing of power within the research paradigm is ethically important. Specifically, disability research should be conducted in a manner that empowers disabled people (Oliver 1992; Oliver 1997; Walmsley, Strnadová, and Johnson 2018) and does not recreate inequity. From a practical perspective, participation of disabled people in research supports its relevance and ensuing product development (Gray 1990). This results in more valuable products, which are (or can be) attributed to a reduction of threat to the social validity of the research (Seekins and White 2013). When research is socially valid, it is more useful, and applied research products receive more actual use by potential users (Wolf 1978). The inclusion of disabled people in participatory research better ensures that research topics are relevant, consumer goals are clarified, and consideration is given to potential users’ expectations and criteria for use (Seekins and White 2013). Further, the participation of disabled people in research can add value by incorporating lived experience (Aubrecht et al. 2021) and disability-specific contributions (Walmsley, Strnadová, and Johnson 2018) that may be otherwise lacking from a research endeavor.

Participatory research procedures are a good fit for research regarding disabled people because their use engages community members in a manner that integrates civil rights and is respectful of their dignity (McDonald and Raymaker 2013; Ollerton and Horsfall 2013). Disabled people have engaged in participatory research in a variety of fields, ranging from self-directed care programs (Cook et al. 2010) to public transportation barriers (König et al. 2021) and poverty (Buettgen et al. 2012). Furthermore, some inclusive research groups have extensive collaboration histories (i.e. García Iriarte et al. 2021). Participatory research is known by a variety of different names including participatory action research and community-based participatory research. Despite nominal differences across these orientations, they generally adhere to principles that effectively engage community members in collaborative relationships that share power in both the design and implementation of research. The foundational principles and characteristics of community-based participatory research, as they relate to participatory research procedures, can be summarized as a process that is: (a) participatory, (b) cooperative, (c) a co-learning experience, (d) empowering, and that (e) involves the building of systems and local community capacity, and (f) achieves a balance between action and research (Minkler and Wallerstein 2008).

The principles for conducting participatory research are well established. However, while these principles suggest how to conduct participatory processes, they do not specify procedures to be used for intervention content development, per se. For example, Hamilton et al. (2017) described how their intervention development process used participatory research principles and procedures to guide the development of videos for an intervention. However, procedures for creating the intervention content in the videos were not described. Participatory procedures are intended to engage stakeholders in research procedures that are already well-established (e.g. sampling and research design). They do not specify how to develop intervention content.

For this study, we filled this gap by using procedures for participatory curriculum development (Taylor 2003). This method of curriculum development has much in common with participatory research philosophy and suggests that curriculums should be developed through a process that involves the intended audience (Taylor 2003). Participatory curriculum development engages participants throughout the curriculum development process (Rural Institute 2020). The procedures for participatory curriculum development include five stages: (1) Situation analysis: an examination of the context for curriculum implementation and how context can potentially support or undermine curriculum implementation—topics of interest to learners are also identified in this stage; (2) Development of curriculum framework: identification of learning objectives; (3) Development of the detailed curriculum content: identification of appropriate training methods and materials to meet the learning needs; (4) Curriculum implementation: detailed planning of the training, including how the curriculum will be delivered, and (5) Evaluation for evidence of learning (Skilbeck 1984; Taylor 2004).

Although it is a fairly new approach to health-related curriculum development, participatory curriculum development has been used in resource- and community-development fields, as a process for both adapting existing curric-ulums and developing novel curriculums, since the 1990s. Participatory curriculum development emerged as a strategy for working in developing countries, where it was used in agricultural education (Rogers et al. 1998) and rural development (Taylor 2003) for developing efficacious and sustainable projects.

Participatory curriculum development has not been widely adopted outside of these fields. However, it has been used to some degree to develop training curriculums in a variety of other disciplines, including: adult second-language literacy (Auerbach 1992), higher education (Gubo et al. 2008; Alexander and Hjortsø 2019), healthcare leadership (Wilson et al. 2016) and the training of midwives (Sidebotham et al. 2017) and disability paraeducators (Parker et al. 2017). The current study builds on previous research by integrating the unique knowledge of disabled people to develop curriculums supportive of their needs, as informed by their experiences.

Insights into the participatory curriculum development process have seldom been reported, but those that have been are instructive. For instance, Gubo et al. (2008) described the importance of investing energy in team formation and reflecting critically on the process (both for process monitoring and for developing a group identity). They also observed the tendency of relationships developed through participatory curriculum development to extend beyond the project, resulting in broader capacity development. Echoing the first of these insights, Parker et al. (2017) described the importance of in-person meetings to team formation. They also described the necessity of leadership in addressing complexities encountered through the process, the importance of integrating divergent stakeholder perspectives, and the value of drawing from existing knowledge resources.

Although the current project was conducted in 2015–2017, it remains relevant because, to our knowledge, it is the only use of participatory curriculum development to date in which disabled people have participated directly as primary collaborators in the curriculum development process. Previous participatory curriculum development has been used, albeit rarely, to develop curriculums for which disabled people were the intended beneficiaries (i.e. Tomasone et al. 2015; Parker et al. 2017). However, disabled people were not engaged as participants in the development of those curriculums. This is an important distinction, given that meaningful participation is a principle of the disability rights movement (Charlton 1998).

To understand the inclusion of disabled people in this participatory curriculum development process, we asked the research question: Was the participatory process we implemented effective for engaging Center for Independent Living staff in a manner involving equity and sharing of power? To address this question, following the guidance of Gubo et al. (2008), we invited the Center for Independent Living staff, who had engaged in the participatory curriculum development with us, to complete in-depth interviews to critically reflect on their experiences and the process.

Research process

Participants

We recruited a convenience sample of Center for Independent Living staff (n = 12) from eight Centers for Independent Living to participate in qualitative interviews. Throughout this paper, we use the term ‘partners’ to reflect the participatory role of these interviewed participants. These partners represented 12 of the 13 staff who had previously engaged with us in the participatory curriculum development process, all of whom we invited to participate in the interviews. Three of the 12 partners whom we interviewed were men and nine were women. These partners were split evenly between those who assisted in building curriculum from scratch and those who worked on modifying the existing curriculum. Ten of 12 partners reported their age. Of these, the mean age was 40, ranging from 29 to 58. Eight of 12 reported their race and ethnicity as white/Caucasian, non-Hispanic; of the remaining four partners, one reported Black/African American, non-Hispanic, one reported ‘other’, one reported only Hispanic ethnicity, and one did not report a response. Nine of the 12 partners identified as disabled. Of the 11 partners who reported the number of years they had worked in the independent living field, the median number of years was eight, ranging from five to 20 years.

For the participatory curriculum development process that occurred prior to the interviews, we recruited staff by telephoning the directors of Centers for Independent Living that were deliberately selected to represent all four U.S. census geographic regions. We contracted with four of these centers to provide 2.80 staff full-time equivalent hours, spread across eight staff, to work on curriculum development teams. They provided input on the curriculum based both on their own experiences as Center for Independent Living service providers and, for most, as disabled people. They also brought in feedback from their current consumers, from whom they requested ideas for content that would be useful in given topic areas. We provided a small honorarium to the other four Centers for Independent Living for four staff to be in less time-intensive advisory roles. In addition to their advisory roles, the staff from these centers served as backup in the event one of the development sites dropped out; however, this did not occur.

Data collection

Research and ethics approval was received from the University of Montana, Institutional Review Board. Following this, all 12 partners were invited via email or telephone to participate in semi-structured phone interviews. Phone interviews lasted about 48 minutes on average, ranging from 35 minutes to just under an hour. A graduate research assistant who was not part of the curriculum development process scheduled and conducted the interviews after collecting written informed consent. Questions covered several areas, including a description of the partners’ overall involvement, individual contributions, impressions of the specific stages of development, and interactions with other team members. Interviews were audio recorded and transcribed verbatim.

Procedures

Prior to engaging in the participatory curriculum development process, we provided eight weeks of onboarding training to orient the team to the background of the project. We then completed the first three participatory curriculum development stages prior to interviewing partners about their experiences with the process. The onboarding training and how we implemented these first three stages are described below.

We prepared the 13 partners to implement the participatory curriculum development procedures with the research team in two ways. Initially, we on boarded partners using a Moodle classroom (i.e. asynchronous online classroom software) to orient the staff to the project by sharing information and documents. During this period we also held eight weekly teleconference calls, which served to: (a) orient the team members, (b) begin the teambuilding process to establish trust, (c) review information, and (d) check on progress with tasks assigned the prior week.

Following the weekly teleconferences about the Moodle content, we held a two-day in-person meeting in Missoula, Montana with all the partners. While the purpose of this meeting was to engage in the first two steps of the participatory curriculum development process, we also included opportunities for partners and project staff to get better acquainted (e.g. ice breakers such as ‘what is your favorite holiday?’). This meeting provided an opportunity to build working relationships. The structured agenda mixed work activities with open time for socializing and sharing meals. We also provided a vision of what the online curriculum product might or could look like. We reviewed content development timelines and brainstormed activities for engaging end consumers in the development process. This included reviewing social media platforms (e.g. Facebook, Pinterest) for curating content and Slack for communicating between team members. To follow is a brief description of our implementation of the participatory curriculum development stages.

Stage 1: situation analysis

We first conducted a stakeholder analysis to identify specific groups that would be affected by the interventions. The development teams grouped stakeholders as internal or external to the future application of the curriculum, identified their interests in the interventions—noting any conflicts of interest, and finally described potential effects the intervention may have on the stakeholders’ interests.

Next, the development teams conducted a Strength, Weakness, Opportunity and Threat (SWOT) analysis (Center for Community Health and Development 2018). During this process, the teams identified facilitators (e.g. independent living skills training experience) and barriers (e.g. staff turnover) to curriculum use and to features outside the immediate implementation setting (e.g. federal funding opportunities, lack of resources).

Lastly, based on the first two steps in the Situation Analysis, we assessed the fit between preliminary curriculum concepts and our understanding of the context of the Centers for Independent Living where the curriculum would be delivered. This involved examining how the concepts fit with the interests of internal and external stakeholders. Where potential conflicts existed, we discussed solutions (e.g. providing stakeholders with introductory materials to describe the curriculum concepts). We then examined how the curriculum concepts fit with our SWOT analysis. Using this process, we examined how we might take advantage of strengths and opportunities while addressing weaknesses and threats of the context.

Stage 2: develop curriculum outline

Following the Situation Analysis, the development teams created preliminary versions of the course outline during the first in-person meeting. These outlines established the potential content, and flow of content, for the curriculum. We first determined the type of course that was appropriate for the goals of the curriculums. This included the timing, location, format (e.g. group or 1:1) and duration of the course. The development teams reviewed alternative ways of delivering the curriculum and made recommendations for how it would function best for consumers. For example, we discussed how some content should be presented didactically while other content should incorporate discussion questions and hands-on exercises (e.g. a physical activity inventory).

Stage 3: develop detailed curriculum

Following the first in-person meeting, the teams began holding separate weekly teleconference calls to explore methods for curating and writing content. Following a trial-and-error process for engaging end consumers in this process, the teams settled on a development process. This process was implemented following a second in-person meeting held the day before the annual conference of the Association of Programs for Rural Independent Living.

The development process, which was used to design specific content and lesson plans for the curriculum, followed a sequence of four weekly team meetings. We repeated this four-meeting sequence for each curriculum topic. During the first meeting, the teams collected and reviewed information and resources relevant to the topical outline. The research team then met and revised the topical outline using this information. At the second meeting, the development teams provided feedback about the outline and suggested resources and other content including photos and videos that could be incorporated. For the third meeting, the teams discussed potential activities for the session topic. The development teams then presented these activities to their consumers and provided feedback at the fourth meeting to the research team. The research team drafted detailed outlines based on the information collected from the four meetings. This process for developing detailed content for the entire curriculum took 11 months.

We used this participatory curriculum development process to design a new curriculum and revise an existing curriculum. The new curriculum centered on supporting disabled people to gain independent living skills; it was titled Community Living Skills. The adapted curriculum was our Living Well with a Disability curriculum (Ravesloot et al. 2007), which promotes healthful behavior that leads to positive health outcomes. We retitled the adapted Living Well with a Disability curriculum as Living Well in the Community. All content, including media content and written exercises, was included on the website so that the entire product was available online.

Data analysis

Using thematic analysis (Braun and Clarke 2006), a deductive approach guided data collection and analysis, focusing on the aspects of participatory research that emphasize the sharing of power (Minkler and Wallerstein 2008). Data analysis was completed using QSR NVivo 10 data analysis software. To organize the experiences of partners who were interviewed, we primarily used evaluation and process coding (Saldaña 2013) specifically related to the project activities and processes. For evaluation coding, researchers ‘assign judgements about the merit, worth, or significance of programs or policy’ (Saldaña 2013, p. 119) while process or ‘action’ coding guides coding through researchers identifying and grouping human actions and interactions. We also identified common emotional states related to these experiences.

In an effort to reduce individual bias, we took several steps in our coding procedures. First, two researchers independently coded two of the 12 interviews for evaluation and process themes. After meeting and discussing the initial codes, we agreed on a set of codes and descriptions of what would constitute that concept of interest. Process codes included learning, participating, involving consumers, creating, collaborating, and empowering. Finally, emotional states included pride, uncertainty, excitement, frustration, and admiration. Evaluative positive and negative codes were created for each of the project activities and major processes. When statements about activities or processes were determined to be neutral, they were placed in the positive category. Despite taking these steps, we recognize that all research, qualitative coding included, is shaped by the lived experiences and temporal perspectives of the researchers involved (Braun and Clarke 2006).

After the remaining ten interviews were coded for project activities, processes, and emotional states, we wrote extensive memos based on positive and negative themes within the project activities (e.g. processes and emotions related to the first in-person meeting) and, finally, recommendations for future projects. The activity-related memos focused on the most common processes and emotions within the project activities. Upon further reflection on our research question, we focused our findings on topics related to the sharing of power (learning, collaborating, and empowering) and the emotional states and recommendations related to them.

Findings

Three main themes were identified across the entire data set: learning, collaborating, and empowering. Throughout this section, we focus on the convergent experiences of Center for Independent Living staff involved in the development of both the Community Living Skills (curriculum developed from scratch) and Living Well in the Community (revised existing curriculum) teams. Where team experiences diverge, we clarify these occurrences.

Learning

Learning included learning something new, being open to learning, and learning from others. When asked about the onboarding process, an eight-week period in which partners were oriented to the participatory curriculum development process prior to engaging in the first curriculum development stage, responses reflected the intended learning orientation. Partners experienced the assigned self-study learning modules, which were designed and assigned by the research team and used for onboarding, as more instructional and less participatory than subsequent stages. For example, Mia (a disabled woman in her early 30s) described:

It’s almost like an online class. Like you log on and follow the directions and then be done kind of.

Partners described these activities as a learning opportunity in which they supported each other to become familiar with the process. Ron (a man in his early 30s with six years’ experience working in independent living) talked about becoming familiar with the software platform originally used:

That first eight weeks was a lot of technical questions and assistance […] and explaining to each other like what the project was.

The learning that occurred during the onboarding process was marked by uncertainty about how the process was going to unfold, needing to learn what was expected, and adapting to new ways of doing things. Partners struggled with envisioning what the final product would be and knowing if the process was working, as well as understanding their roles and the roles of others in the process:

Sometimes as a team I think we were wondering […] where it was going and if we were making progress. (Jim, a man in his mid-40s with 15 years’ experience working in independent living)

[A]t the beginning [I was] just not quite sure what our role was, or how that was all going to look. (Kathryn, a woman in her early 30s who did not identify as having a disability herself)

Later, at the first in-person meeting, Center for Independent Living staff came to learn about and better understand the project vision and their roles in it. Jim described:

When we were able to come together as a team, we kinda saw a little bit more about the vision, and how, what we were doing kinda fit in with that vision.

Although the project stages that occurred after the conclusion of the onboarding orientation were characterized less by uncertainty than was present initially, uncertainty was present at these later stages in the context of challenges with bringing together various viewpoints:

Everybody comes to this with a different idea in mind, and so when you’re working together you have to keep that in your thought process as well […] are you gonna bring all those visions together? Come up with one final curriculum? I think it was fascinating. (Harriet, a woman in her late 40s with a disability and eight years’ experience working in independent living)

In adapting the Living Well with a Disability curriculum, uncertainty was related to not knowing how to give input on an existing product created by the researchers. Lane (a woman in her late 20s with a disability) described this experience:

I kinda had to wrap my head around the curriculum itself, but then also the expectations of me as an advisor.

The teleconference format was another source of uncertainty. Partners expressed concern about not knowing when people were done speaking and discomfort about possibly ‘cutting’ over others. This project took place in 2015–2017, before the widespread use of video conferencing. Centers for Independent Living staff recommended that teleconferences would have been enhanced by the inclusion of a visual component (e.g. Skype or Zoom):

We used Adobe Connect, but we didn’t really turn on the cameras with it. And I think that might have been useful […] it makes it a little bit more personal which allows some more inter-personal connectivity. (Harriet)

As an overarching remedy to uncertainty, partners recommended meetings with an in-person component occur earlier in the process, to build relationships and promote teamwork. These types of meetings, when they did happen, were viewed as ‘very, very important, very, I think, vital’ (Kathryn) because they facilitated ‘beneficial’ group connectivity and accountability more than did teleconferences, which were ‘less engaging’.

Learning was the least participatory theme identified in the current study. This theme speaks to the fact that this particular participatory curriculum development project was initiated by the research team and funded prior to orienting Centers for Independent Living staff partners to the project and its processes. Most of the learning, and associated uncertainty, described in this theme was connected to the onboarding process, which occurred prior to the initial stages of participatory curriculum development.

Collaborating

Collaboration included being part of a team, working in workgroup and outside partnerships, and working together on project-related tasks. Genuine collaboration began when the onboarding process concluded and the weekly teleconferences began. The teleconferences created regular, ongoing space for communication and teamwork, and allowed partners to engage in the participatory process. Participation was salient in these teleconferences. For example, Harriet described them as a space to ‘feel we could work together, we could hear each other’s input’ Jim laughed when asked if he could share a time he felt like he contributed: ‘Can I tell you a time? Every week!’

Teleconference facilitation, which was provided by the research team, was generally perceived as supportive, inclusive, and inviting. Partners described the research team as ‘very collaborative and open’ (Kathryn). Partners shared that having meeting agendas set ahead of time by the research team supported their engagement by clarifying expectations. For example, Casey felt the structure had a positive impact on project culture because ‘roles were defined and how and what we were expected to bring to the table on those weekly calls. So, knowing what our responsibility was really helps’

Collaboration was greatly enhanced by the first in-person meeting. Despite the two months of on-line and digital meetings leading up to the first in-person meeting, partners suggested this meeting was a coalescing moment for the teams. Descriptions of this meeting were overwhelmingly positive; Harriet called it one of her ‘favorite memories’ Centers for Independent Living staff talked about the value of the ‘camaraderie’ and social connections that happened in these meetings, and highlighted the impact this had on overall engagement:

I just think it made people more apt to give suggestions, to seek input […] when you’re working together and you feel comfortable with each other, you’re more likely to want to give that input. (Harriet)

I just think that human connection, you know, that ability to gather and share and everything in person versus over the phone is, is just essential. (Susanna, a woman in her late 50s with a disability and seven years’ experience in independent living)

Relationship building supported project collaboration. Alice (a woman in her early 50s with a disability and 20 years’ experience working in independent living) lamented:

It’s almost like it’s too bad the project wouldn’t have started with face-to-face […] Because it provided a real sense at that point of what the project was really about, where we were going, and meeting the team as a whole, together.

Ron noted that this meeting allowed Center for Independent Living team members to get a better sense of the research team—to ‘understand where their intentions lie’—suggesting a building of trust that had not happened through teleconferences. He went on to say:

I think honestly that what we did in the first meeting was more so of a community-building … where we just got to know people. I think that was really big.

Erin (a woman in her early 40s with 10 years’ experience working in independent living) talked about the importance of seeing the research team’s enthusiasm and commitment to the process, which the first in-person meeting made visible:

It was great to be able to see their passion and you could really tell that it was something that they were very invested in […] I’ve been part of lots of processes that get people together, and you get all this information, and then, ‘Well, thanks. That’s great’. And, you know, they never, really, actually ever use it. But, you could tell that they were very invested.

Relationships built through informal socializing during the first in-person meeting segued into ‘peer support’ and ‘networking’ among partners. Kathryn shared that although the meeting did not last long, it was important for ‘cultivating and fostering that energy and cohesiveness’. The social connections established at the first in-person meeting were important to subsequent participatory curriculum development stages, in which partners felt increased comfort with sharing their expertise. For example, Lane spoke of how important these relationships were for creating opportunities, both in the current project and beyond:

We shared meals together, did activities together and so it created a bond. And now I have friends in different states, where I wouldn’t otherwise. And I’m able to email them or call them […] and say, ‘Hey. I have a question about this. Have you come across this at your center?’

Building on the cohesion of the first in-person meeting, the second in-person meeting contributed to a sense of extended teamwork. Jim described the collaboration that happened in the second meeting as focused on getting work done:

It was more like, ‘Okay, we’re not just team members that are being trained, but we’re actually team members coming together with a specific known purpose’.

He went on to share that this second in-person meeting was reinforcing: ‘[it] cemented for me the importance of what we’re doing and how we were doing it’. Similarly, Harriet attributed the productivity of the second in-person meeting to the previous work that had been done to build the teams:

We then were able to get into the nitty gritty of what was working and what wasn’t, and again because we knew each other […] it gave us a better rapport to make changes, to review things, and feel comfortable with what we were suggesting.

By the end of the curriculum development process, feelings of uncertainty that had been present initially gave way to feelings of admiration, including respect and appreciation for team members and the participatory process. Kathryn reflected on how the process unfolded and resulted in materials over time:

It was really cool to see that evolution and this idea that they had kind of come to life […] to see that process and see from day one, just figuring out what to include, and then filling in that information of what topics, and activities or discussion questions or pictures and videos.

Partners especially appreciated how the teleconference facilitators provided opportunities for everyone to speak up:

The way the team was facilitated—getting everybody’s input […] they’re awesome at picking up people’s […] specialties […] their skill set […] how they utilize everybody’s feedback and invited everyone’s feedback, I think that was pretty awesome. (Jim)

We all had ample time to share our thoughts, views, and perspectives, and if we wanted to share more we were always welcome to email each other and talk at any time. (Harriet)

Despite these positive feelings for fellow team members and the group process, at times collaboration connected to feelings of frustration. Frustration was associated with learning new technology and with envisioning the final products. Ron shared that ‘it was very difficult to, to envision it’. Some partners also found it frustrating to contribute in the teleconferences. For example, Mia described speaking up in roughly every other meeting:

I think sometimes it was hard to kind of add to the conversation just because sometimes people were just talking and then we’d move on to the next point. So sometimes it was hard to just kind of get your word in.

She did, however, find other ways that were more comfortable to contribute, such as sending in curriculum development resources (e.g. budgeting worksheet).

Partners also shared that they would have liked to have had a better sense of expectations of their participation going into the process. This related both to attaining progress ‘benchmarks’ and to timeframes for their participation. Additional recommendations for making the process more collaborative centered on how to include diverse stakeholder perspectives, especially end users of the curriculum, people with a variety of disabilities (including intellectual and developmental disabilities), people from diverse cultural and demographic groups, and people with expertise relevant to curriculum topics (such as nutrition), while also keeping the group size manageable. The most frequent recommendation for additional team members was for Center for Independent Living consumers, who provided feedback on the curriculum in the later stages of the project, to be involved earlier in the development process:

If we were to add one thing, well, consumers would be a part of the process from beginning to end […] I mean, they’re at the heart of everything […] somebody that is, like, going to be receiving it rather than people that are providing […] to have that perspective […] I think that would be invaluable. (Ron)

[…] having an actual consumer as a part of the development process versus just feedback on the curriculum. But like, being a part of the development team. (Lane)

Overall, collaborating was a positive experience that was facilitated by meeting in person, which allowed partners to get a better felt sense of one another and facilitated communication. Although some partners suggested a video component would have improved the teleconferences, it is unlikely this could have replicated the relationship development and group cohesion made possible by the combination of structured activities and unstructured time during which partners connected during the in-person meetings. Without this relational grounding, the curriculum development would not likely have been as successful as it was.

Empowering

This theme included feeling heard and seen, creating space for unheard voices, action aligned with independent living philosophy, and sharing values. As partners became familiar with the participatory curriculum development project and its goals, they reported increased feelings of competence and enthusiasm for creating something that would empower disabled people to increase control over their lives.

Empowerment was most salient during curriculum-building activities when consumers, representative of the end users of the curriculums, were brought into the development process for their expertise and to steer the curriculum development. Consumers were invited to share their ideas for specific content that would be of use in given topic areas, as well as to contribute photographs from real life to augment the curriculum. For instance, Ron talked about many ways he invited consumers to participate, such as ‘asking people to upload videos or to write narratives’ for the curriculums. Centers for Independent Living staff noted that involving consumers in this manner aligned with the independent living philosophy of ‘nothing about us without us, which Jim felt was trailblazing:

We always say in the independent living movement that consumers are the professionals. They are the ones that know the best about what they need, and so, having said that, I think it’s really awesome and really, kind of a trailblazing way to approach the curriculum, was to get the consumers involved.

When asked what it meant to participate in this project, Kathryn shared that it was ‘really important’ to have disabled people ‘involved and have their voices heard and included’, and that the project was framed in terms of ‘How can you empower yourself to live, have a fulfilling life in whatever that may look like for you?’

As the curriculum-building progressed, partners became excited about being part of this innovative process that would support Center for Independent Living consumers:

When it’s said and done and finalized, it’s gonna be so useful. Worth every bit of every effort that went into it. (Susanna)

There’s a feeling when you’re involved in something. Sometimes, there’s a feeling of like, ‘I don’t even know why I’m fricking bothering with this. This is stupid. This is ridiculous […] they don’t really care’. […] in this project, that was never ever the case. (Erin)

It was actually what we needed. We had a lot of consumers who needed life skills training, and the curriculum just filled the need space, it filled that gap. (Teresa, a woman with 20 years’ experience in independent living who did not identify as having a disability)

Reflecting on later project stages, partners expressed pride in creating a meaningful product that would be empowering to curriculum users:

The pride and just confidence that something could get done that could be part of something so big… and have so much meaning. And it’s useful. The program is gonna be extremely useful for people. (Susanna)

It meant a lot to me, I, I knew at least that it would only enhance the wellbeing of disabled people to empower themselves for better health […] So to me it was a great thing. (Harriet)

Despite the ways the process was seen as empowering to consumers, partners also expressed wanting to have an equal sharing of power with research staff. Partners alluded to power dynamics during the onboarding process. In particular, partners felt averse to the assigned writing exercises used for onboarding, and shared that the didactic nature of this stage, coupled with directed tasks, felt like an unwanted return to ‘high school’.

The desire for more equitable sharing of power also extended to the choice of communication platforms. Although some partners found the many platforms to be useful, others expressed that they ‘really didn’t have time’ (Ron) to keep up with all the aspects of communication and that there was ‘confusion’ around when to use each of the multiple platforms: ‘do I do [that platform], or do I do this’ (Alice). Participants recommended that group members need to be on board with the chosen communication platform(s).

The desire for greater sharing of power extended to group brainstorming conversations and decision-making, in which some partners did not feel fully heard. In particular, several partners expressed dissatisfaction that their feedback on the curriculum logo was not acted on. Harriet shared:

Some of the visuals were very childlike in nature, and for people with disabilities that’s negative because often times people in the disability culture and community, are viewed as childlike beings. […] I remember we went round and round on that […] and some of us felt like our input wasn’t being heard, and it wasn’t we were trying to cause offense […], but knowing the people it was going to serve, and their, their reactions to it, and we were just trying to give that input.

Lane agreed, and expressed disappointment that the logo was not developed using a participatory process:

I personally was taken aback when the logo was presented because us, as partners on the project, had no idea a logo was being created. And since my understanding was that this was participatory and it was all based on our feedback as a collaborative group, to have a logo all of a sudden presented without us having given any input on what it could or might look like…Um, took me by surprise.

Alice had a similar sentiment about the logo, however, in her opinion, this experience was not representative of the participatory curriculum development process overall:

Not one of [the Center for Independent Living staff] liked it because they felt like it was a kindergarten group. But, […] I think that was the only negative thing that I could think of.

Reflecting on how sharing of power within the participatory process felt like a struggle, Alice went on to say:

At times [it was] us versus them. […] But, I do have to say the research team is an awesome group of people. I mean, it’s just, I think, different mindsets. […] I would say that the research team had 75% of the voice and the rest of the team had 25% of the voice. […] I would’ve expected it to be more 50/50.

Along the same lines, participants advocated for greater empowerment of consumer end-users during the curriculum development process:

[…] maybe [consumers] could have the larger voice. (Mia)

Overall, partners viewed the process as empowering to the Center for Independent Living consumers who were involved in the project and to the projected end-users of the curriculums. However, greater sharing of power was recommended, with power divided equally between the research team and the Center for Independent Living staff, as well as the inclusion of Center for Independent Living consumers and the amplification of their voices within the power dynamic. Partners also recommended that communication platforms be mutually determined as part of the participatory process.

The experience of unequal sharing of power conflicted with partners’ expectations for the empowering and participatory nature of participatory curriculum development. We did make some changes intended to address power imbalances, such as shifting partners’ regular development activities and changing our strategies related to the selection of social media platforms used for development activities, based on partner feedback. For example, early in the process, we had asked Center for Independent Living staff for help finding relevant content, such as videos, on the Internet. They told us this was not in their wheelhouse and, in response, we shifted to having them provide content from their centers and review content with their consumers. However, partners desired a more thorough sharing of power, and these changes did not address the issue in full.

Discussion

In the current study, we investigated the use of participatory curriculum development to develop intervention content. We used a combination of in-person and teleconference meetings to engage end users in the development of a community living skills intervention and the adaptation of an intervention promoting healthful behavior. Overall, qualitative interviews with partners indicated their orientation to the process was a learning experience characterized by uncertainty and some frustration, but that when the actual participatory curriculum development project stages began, partners were able to meaningfully engage in the process in a collaborative manner. Although partners noted that the process was empowering to consumers who were involved and that the curriculums would be empowering to the intended audience of disabled people, dissatisfaction was also noted within the curriculum development process: Participants desired an equal sharing of power with the research team.

Our analysis shows that some opportunities were missed for creating a genuinely participatory process. Unequal sharing of power, which was salient primarily during orientation and the development of the logo used to represent the curriculum, was a result of our own shortfalls. We applied for and received grant funding for this project prior to funding our project partners’ participation. As a result, the grant objectives were established prior to our partners’ engagement. This disrupted sharing of power from the beginning because our grant funding included limits on the topics that could be developed within this project. For example, partners were interested in including content regarding employment. However, employment was not a topic funded under our grant. Thus, it was not a topic we developed.

Although the nature of the grant objectives was set, we could have shared power more equitably in the project management, such as in developing meeting agendas and facilitating meetings, rather than assigning these tasks to research team members. While this was not a topic described by partners, sharing power in this manner would likely have set the stage for a more genuinely participatory process. Even outside of the parameters of participatory curriculum development, stakeholder engagement in designing curriculums is facilitated by participant empowerment and sense of ownership, and by the establishment of a culture of equality (Belita, Carter, and Bryant-Lukosius 2020).

Additionally, our choice to push forward with a logo developed outside of the participatory process took power away from our partners who had expressed concern about this image. We made this decision in the context of time pressure to prepare for an annual conference at which the curriculum was to debut. Although we subsequently changed the logo in acknowledgment of this misstep, to have been genuinely participatory at that stage we should have respected the discomfort shared by our project partners and postponed the logo development until we could generate a design based in shared-power agreement. We could also have increased participation by sharing power during the onboarding process. For example, we could have created opportunities for partners to provide input and feedback about the kinds of background information they thought would be useful. Along the same lines, we could have strengthened stakeholder inclusivity by involving consumers earlier in the development process.

The dynamic issues of engaging with stakeholders, in ways that are genuinely participatory, and proactively addressing tensions that emerge have been recognized as areas of challenge in participatory curriculum development (Alexander and Hjortsø 2019). This is also true of inclusive research with self-advocates (Strnadová and Walmsley 2018) and of participatory research in general, which is often rooted in romanticized ideals (Ottmann, Laragy, and Damonze 2009). However, there is no guarantee of effective participation. To address conflicts that may emerge when disabled people engage in participatory research, Gustafson and Brunger (2014) have suggested focusing on shared commitments to the principles of both participatory research and independent living philosophy. Moreover, future participatory curriculum development undertakings could benefit from using inclusive evaluation (Mertens 1999) or participatory monitoring and evaluation (Estrella 2000) approaches, which include stakeholders as a check to ensure sharing of ownership and power over the development process. These practices have been used in previous participatory curriculum development processes (e.g. Gubo et al. 2008; Sidebotham et al. 2017) for these purposes, as well as to resolve tensions among participatory curriculum development group members.

Even though our findings indicated ample room for improvement in how power was shared, empowerment was a useful framework for examining this participatory curriculum development process. Empowerment is one of five principles and characteristics of Community-Based Participatory Research (Minkler and Wallerstein 2008). We noticed that the main themes we found closely approximated four of these five principles and characteristics: (a) collaborating approximated both cooperation and participation, (b) learning approximated co-learning, and (c) empowering approximated empowerment. This thematic overlap appears to indicate that the current participatory curriculum development process reflected tenets of community-based participatory research, and of participatory research more broadly, while pointing to pitfalls other researchers may encounter.

Our examination of this participatory process also illuminated how relationship dynamics may have contributed to power sharing. For example, relationship development between researchers and potential community participants is typically an initial step in a participatory research process. However, the current project functioned differently. Because community partners were paid to participate, and did so as part of their regular jobs at Centers for Independent Living, we did not focus on relationship development as a critical first step in obtaining participant commitment. Nevertheless, we discovered that initial relationship-building was an essential starting place in the research process, and that meeting in person was highly effective for team building. In fact, participants recommended including an in-person meeting to kick off the project to facilitate better understanding of the project and greater opportunity to network with other team members. Even though most of the team’s ‘work’ occurred between weekly teleconference calls, those that occurred after the initial in-person meeting were most effective for eliciting meaningful participation.

These findings align with previous participatory curriculum development evaluations (i.e. Gubo et al. 2008; Parker et al. 2017) and with Hoeft et al.’s (2014) findings that in-person meetings support participatory partnerships by developing relationships and improving communication. Similarly, Davis et al. (2006) concluded that in-person contact prior to video-mediated communication may support successful interactions by improving impression formation and trust. Previous research suggests that these same benefits have not been found simply by adding a video component to teleconferences (Oh, Bailenson, and Welch 2018). Similarly, this finding aligns with Genat’s (2009) understanding that researchers’ manner of engagement with the participatory research participant group determines not only the nature of the research partnership and its quality, but also the extent of participation that occurs, the depth of data that emerges from the process, and the degree to which the researchers are regarded by participants as trustworthy allies. It should be noted that paying participants is uncommon in participatory research. This may affect generalizability of the findings, especially in terms of partner retention.

Our findings suggest that participatory curriculum development is a worthwhile development approach for sustained inclusion and direct participation with key stakeholders, which is well-aligned with participatory research philosophy. Ottmann, Laragy, and Damonze (2009) recommended that for participatory research to be suitable for designing programs for health and social services, additional participatory research-inspired methodologies must be developed. These authors suggested that such additional methods are essential for facilitating ‘deliberative user participation’ (p. 43) and expanding the reach of participatory research. The results of the current study suggest that participatory curriculum development is a valuable method for achieving these aims. Participatory curriculum development provides a template for the previously unanswered question of how to develop intervention content in a manner aligning with participatory research principles. Notably, attention is needed to foster genuine participation and sharing of power within participatory curriculum development processes, and participatory monitoring approaches are recommended to facilitate equitable sharing of power.

Points of interest.

• This article looks at the development of two curriculums for disabled people, one about independent living skills and the other about healthy behavior. Both curriculums were designed with disabled people participating as collaborators.

• Participatory processes have seldom been used for developing health promotion curriculums, and they have not previously been used with disabled people as collaborators.

• We found meeting in person was important because it was where team members built relationships with one another, and this led to other positive outcomes.

• In the process of developing these curriculums, disabled people wanted power to be more equally shared.

• Involving disabled people in developing curriculums for which they are the intended users appears to be worthwhile.