From Empathy to Action: Design Thinking as a Catalyst for Community-Based Participatory Research in Dementia Caregiving

Abstract

This article delves into the understudied realm of investigating the potential benefits of integrating design thinking into community-based participatory research within the context of culturally diverse dementia caregivers. Following the Double-Diamond process model, we conducted a series of workshops with 15 family caregivers of dementia patients from three distinct communities (multi-racial, Black, and Latino ethnicity) to gain insights into their daily experiences and co-create interventions that could address their pressing challenges. The research question for this study aimed to explore the potential benefits of design thinking in community-based research on dementia caregiving. Our findings contribute to the health design community by demonstrating the potential of design thinking to 1) uncover common and distinct challenges in diverse communities, 2) translate findings into actionable solutions, and 3) design tailored interventions that are responsive to the context-specific needs of the community. Our study leads us to conclude that the integration of design thinking as a catalyst in community-based participatory research has the potential to amplify the identification of nuanced and previously unexamined challenges through empathetic exploration, and to propose innovative interventions that are more amenable to uptake and acceptance within the community.

Introduction

Community-based participatory research (CBPR) is an approach that involves collaboration with community members, organizational representatives, and researchers at all stages of the research process. The goal is to address social, structural, and physical environmental inequities that are meaningful to the community and to co-create knowledge with community members. CBPR recognizes that community members have valuable knowledge, perspectives, and expertise that can contribute to research and that involving them as partners can lead to more equitable, inclusive, and socially responsible research practices (Israel et al. 2003; Israel et al. 2001). Such involvement increases the likelihood that the findings will be translated into effective policies and research programs. In the context of healthcare, CBPR can promote health equity by addressing the needs and priorities of communities (Wallerstein et al. 2021). CBPR integrates education and social action to improve health and reduce health disparities (Wallerstein and Duran 2006).

Dementia caregiving research can benefit greatly from the CBPR approach. While there is a substantial body of work on caregiving, the application of CBPR to dementia caregiving has been relatively limited. Culturally diverse caregivers often face critical challenges which can potentially be recognized and addressed through CBPR. Moreover, there are significant racial and ethnic differences in the experience of caregiving, and these are often shaped by cultural beliefs regarding the management of chronic illnesses like dementia, and the family’s responsibility for care (Dilworth-Anderson et al. 2002). Family caregivers who are racially and culturally diverse may find themselves performing unique tasks such as interpreting in a medical appointment, translating essential health-related documents, or facing unique challenges such as discrimination in medical settings and cultural incompetence perpetuated by healthcare and dementia-related professionals (Coalition 2021).

There is a growing recognition of the necessity to involve communities in early stages of intervention development due to the poor uptake and adoption of evidence-based interventions. This calls for early engagement of community members in the CBPR process. Design thinking (DT) presents an innovative strategy for pre-trial CBPR design, particularly with diverse communities, and holds promise for fostering more sustainable and meaningful interventions. In this study, we utilized DT as a novel framework to conduct participatory research with the dementia caregiving community. DT is a problem-solving approach that emphasizes empathy, collaboration, and iterative prototyping to develop innovative and human-centered solutions (Brown 2008). Following the Double Diamond design thinking framework (Design Council 2019), we conducted a series of DT workshops with the dementia caregiving community to explore how DT can contribute to community-based research and see what opportunities this method offers to the dementia caregiving research community. To achieve these objectives, qualitative data was collected throughout the workshops with a focus on gaining an understanding of unique challenges caregivers from diverse groups face and exploring ways to address these challenges. The framework introduced a series of activities that fostered empathy for dementia family caregivers, aiding in the identification of challenges, including health disparities, and proposing interventions to enhance their well-being, quality of life, and health outcomes. We defined empathy as behaviors aimed at fostering a deep connection and understanding of the challenges faced by the dementia family caregivers’ community. We kept empathy at the forefront throughout the entire process and put it into practice by actively demonstrating behaviors such as attentive listening (e.g., restating their concerns) and appropriately documenting, recognizing, and responding to the community’s emotions, thoughts, and feelings related to their dementia caregiving challenges. Our findings indicate that DT is especially valuable in the early stages of CBPR, particularly when engaging members of diverse groups, ultimately leading to the generation of interventions that are more likely to be accepted and embraced by the community. We anticipate that integrating the design thinking model into CBPR can serve as a catalyst and complementary approach to designing more culturally informed, meaningful and sustainable dementia caregiving interventions.

Background

Community-Based Participatory Research in Health

Community based participatory research (CBPR) is increasingly recognized among health professionals as an approach to collaborative research and critical reflection on community health practice (Hills et al. 2007). The CBPR approach has commonly and primarily been applied to research with marginalized and vulnerable community groups to improve their health and reduce health disparities (Minkler 2010; Wallerstein and Duran 2006). Efforts have been made to integrate the CBPR model to address mental health problems of minorities (Langdon et al. 2016; Stacciarini et al. 2011), understand and address the multiple determinants of children’s health (Israel et al. 2005), address gender inequalities in health for immigrant older women (Chang et al. 2016), and develop a pictorial encounter decision aid targeted to underserved patients with breast cancer (Durand et al. 2016).

Studies have shown that engaging with community members across all stages of the research process can facilitate the development of effective interventions and treatments that are tailored to the needs of the community, which can ultimately lead to improved health outcomes. For example, the adoption of CBPR strategies and the core principles of community outreach sought to help eliminate breast cancer disparities in racial and ethnic minority women (McNeill et al. 2020), elucidate the barriers to successful diabetes self-management for Marshallese (Hallgren et al. 2015), and inform and promote HIV prevention, care, and treatment (Rhodes et al. 2010). One study found that the principles of CBPR can promote action and change in real-world healthcare settings by successfully incorporating research findings into healthcare practice at the systems level (Schmittdiel et al. 2010).

Methods Used in Community-Based Participatory Research

CBPR requires the use of appropriate methods to facilitate collaboration with communities and to collect enriched data that is rigorous and relevant to the community’s needs and concerns. Studies have demonstrated that utilizing a mixed methods approach can be efficacious in obtaining a more comprehensive understanding of the intricate nature of CBPR partnerships across diverse community and research contexts (Lucero et al. 2018). However, the specific methods used will depend on several factors, including, but not limited to, the research question, the community being engaged, and the resources available (Minkler 2005). Therefore, there is no single method or one-stop solution to initiate a partnership with communities (Wallerstein et al. 2012).

In addition to conventional research methods like focus groups and surveys, researchers have made concerted efforts to develop and implement innovative CBPR methods tailored to the distinct nature and nuanced requirements of the research conducted with communities. These methods promote reflective inquiry and empowerment, enabling community members to actively participate in the research process. A prime example can be seen in the use of Photovoice, a qualitative research method that enables participants to take photographs related to pressing community issues and then present them in a group discussion, allowing for a more holistic and insightful understanding of their strengths and concerns through visual representation (Hergenrather et al. 2009). The data gathered from the photo discussion session can be analyzed using qualitative data analysis methods and coded to identify emerging themes and patterns. An intriguing study utilized creative expressions to fully involve Native Americans in the development and implementation of health promotion programs. The utilization of art-based inquiry serves as a powerful tool in reinforcing the principles of co-learning, fostering egalitarian relationships, recognizing non-academic knowledge, and promoting cultural appreciation and identity strengthening to enhance health outcomes (Gray et al. 2010). Another study developed a unique set of CBPR tools called ‘collective-reflection’ to support community-academic research partnerships (Parker et al. 2020). Participants used various methods, such as group discussions, reflections, and idea generation through brainstorming, along with a visual approach, to create a visual-textual summary of their collective reflections. The tools served to enhance both the research process and partnership capacities, ultimately contributing to improved research outcomes.

Design Thinking Definition and Integration in CBPR

Design thinking (DT) is a framework for human-centered design (HCD) in problem-solving. These concepts are closely related and are often used interchangeably. While both methods prioritize meeting user needs and adapting solutions accordingly, DT places a greater emphasis on effectively addressing the correct problem through empathy, ideation, and an iterative process. This approach takes into account solution feasibility early in the design process (Brown 2009). In contrast to HCD, which is well-suited for product and service creation, DT is a comprehensive framework that can be applied across various domains to tackle intricate and ambiguous challenges. For example, DT has been found to be valuable in healthcare for confronting complex challenges by uncovering previously unconceived options and expanding the domain of actions (Rowe et al. 2020). It fosters human-centered research, collective and diverse teamwork, and rapid prototyping to resolve complex and persistent healthcare problems (Roberts et al. 2016). It has been found valuable in supporting healthcare interventions to achieve higher efficiency, effectiveness, and user satisfaction by recognizing the needs of patients and care providers (Altman et al. 2018; Luna et al. 2017). It has been recognized as a crucial tool in supporting clinical researchers with their research initiatives (Aflatoony et al. 2022).

DT and CBPR both share a commitment to co-creation, community engagement, and addressing the needs of the target population, yet they exhibit distinct characteristics and serve different purposes. DT places emphasis on empathy and creativity, employing a more concise process that centers on problem identification and innovative solutions. CBPR prioritizes building relationships with communities, empowering them, and producing knowledge and capacity building, with a longer process (Chen et al. 2020). Despite the distinct characteristics of DT and CBPR, they have the potential to be used as complementary approaches to address real-world problems. For instance, a study that combined HCD strategies with a CBPR approach to tackle violence and other adversities among Latino/a youth helped in reducing health disparities (Kia-Keating et al. 2017). The study demonstrated how HCD techniques can strengthen capabilities as a catalyst for exchanging knowledge and producing actionable insights and potential opportunities for health promotion and change. It’s worth noting that this study did not specifically utilize the DT framework. This study stands out in its novelty by pioneering the integration of DT as a framework into CBPR activities. While the potential synergy between DT and CBPR holds promise, prior to this research, the fusion of DT and CBPR had remained unexplored, and no study had ventured into such an integration.

Methodology

We conducted a series of four 45–60-minute online DT workshops in the context of family caregiving for persons with dementia. The research question for this study explored: ‘In what ways can DT be utilized in community-based research on dementia caregiving and what potential benefits does this approach offer?’ To address this inquiry, we organized a sequence of DT workshops and gathered input from communities of dementia caregivers throughout each session to acquire an understanding of their daily experiences and difficulties in caregiving. In addition, they engaged in co-creation activities to develop interventions that could address their pressing challenges and support them in providing primary care.

Recruitment and Sample

From 2020 to 2022, for two months each fall, we conducted 2–3 part DT workshop series aimed at developing caregiver mastery interventions (i.e., interventions that support enhancing caregiving competencies). The series were sponsored by the Roybal Center, which aimed to stimulate the submission of letters of intent for research projects in the context of dementia caregiving mastery that the center might potentially fund. We engaged 15 caregivers, 11 females and 3 males, from established networks in Roybal Center to share their experiences and collaborate on developing interventions to tackle the challenges they face (Table 1). The inclusion criteria were caregivers who provided extended daily care and assistance to a family member or friend living with dementia and identified as multi-racial (1st year), Black or African American (2nd year), and Latino American (3rd year). These caregivers provided care to their loved ones with different types of dementia, such as Vascular, Frontotemporal, Alzheimer’s, and Primary Progressive Aphasia.

Table 1.

Participants’ Demographic Information in the Design Thinking Workshops

Workshops	Participants (Care Givers)	Race	Gender	Care recipient	Number of years providing care	Investigators	Institute
Year 1	CG1	Multi-racial	Female	Mother and husband	16 and 9 years	25 total registered (4 male, 21 female)	12 different Institutions represented
	CG2		Female	Husband	17 months
	CG3		Male	Wife	3 years
	CG4		Female	Husband	Unknown
	CG5		Female	Husband	Unknown
Year 2	CG6	African American/Black	Male	Mother	5 years	38 total registered (5 male, 33 female)	30 different Institutions
	CG7		Female	Mother	2 years
	CG8		Female	Husband	6 years
	CG9		Female	Husband	5 years
	CG10		Male	Mother	4 years
Year 3	CG11	Latino American/ Hispanics	Female	Mother and father	3 and 12 years	63 total registered (10 male, 53 female)	38 different Institutions
	CG12		Female	Father	7 years
	CG13		Female	Mother	4 years
	CG14		Female	Mother	Unknown
	CG15		Female	Mother	5 years

While our primary participants were caregivers, we also invited investigators from various healthcare specialties and academic ranks, ranging from postdoctoral fellows to full professors, to attend the workshops and gain insight into the community’s issues. They had the opportunity to share their opinions and expertise as they deemed appropriate. The principal objective of inviting investigators (clinical researchers) was to provide them with training in Design Thinking, facilitating the development of patient-centered research initiatives through empathetic recognition of the needs of patients and care providers. This training was intended to augment their comprehension of relatively unexplored and under-investigated challenges within the domain of dementia caregiving. We do not present the results of this training within the confines of this research, as it falls outside the purview of the study’s scope and is available for reference in another publication (Aflatoony et al. 2022). The inclusion criteria for recruiting researchers were their work experience and interest in initiating research in the dementia caregiving context. We sent announcements to relevant healthcare networks to invite clinical researchers to participate, and two members of the planning committee sent email invitations to the caregivers and investigators within these networks. Demographic information on the participants is provided in the table below, but we will focus only on the findings from the caregivers. To protect their identities, we anonymized the caregivers’ names as CG1-CG15.

Design Thinking Workshop with Dementia Caregiver Community

To facilitate and guide conversations among community members, we adopted the Double Diamond process model, which was initiated by the British Design Council in 2005 (Design Council 2019). The Double Diamond model is characterized by its flexibility and straightforwardness, making it practical for implementation in the context of dementia caregiving and online workshops. The process consists of four phases: Discover, Define, Develop, and Deliver, and emphasizes both divergent and convergent thinking modes (Figure 1). The Discover stage involves gaining a deep contextual understanding of the challenges by empathizing with people. The Define phase utilizes convergent thinking to identify core problems by analyzing and synthesizing recurring patterns in contextual data gathered during the empathize stage. The Develop phase seeks to generate conceptual ideas and identify novel solutions to the problem statement using divergent thinking methods. Finally, the Deliver phase uses convergent thinking to focus on adjusting and validating the proposed concepts at a small-scale, rejecting those that are not feasible or promising, using evaluation methods. Despite the linear representation of the Double Diamond model, the process is most effective after cycling through the four iterative and non-sequential stages that incorporate divergent and convergent thinking.

Figure 1.

The Double Diamond model, originally introduced by the Design Council.

Additionally, we incorporated empathy methods, such as storytelling and mindful listening, to foster a deep understanding of the needs of patients and care providers. For example, through interactive storytelling, caregivers were invited to share their stories directly with the research team. This first-hand account allowed us to ask questions, seek clarification, and gain a deeper understanding of their experiences. We initiated this process by practicing mindful listening during conversations with caregivers, aiming to be fully present without judgment and absorbing the nuances of their stories and experiences. In these conversations, we immersed ourselves in the caregivers’ experience to gain a deeper understanding of their context, challenges, emotions, and feelings, going beyond merely gathering factual information. Through documentation and reflection on their shared ideas, we integrated empathy into the intervention development phase by framing the narrative around the caregivers’ perspective. This involved considering how they might emotionally respond to the solution concepts, enabling us to develop empathy-driven interventions.

We created presentation slides to explain the concepts of divergent and convergent thinking in the Double Diamond process, facilitated discussions, and documented the conversations and ideas generated during the workshops in real-time. In each workshop, we first introduced the specific stage of the Double Diamond process model to be used, and then integrated the model into the context of the dementia caregiving community. We took notes, video-recorded all workshops, and synthesized the data from each session to inform and facilitate the subsequent workshops. After each workshop, we employed the open coding method to summarize the qualitative data, which involved identifying recurring patterns and emerging themes. The data was then organized into categories and themes (Saldana 2016) to address the research question and guide the next workshop. The authors facilitated the workshops and promoted dialogue among participants. All participants were invited to a one-hour-long pre-workshop session to assist us in reviewing the workshop plans, co-creating questions, and sharing any insights on how we should implement the DT workshops.

Workshop Details and Findings

Table 2 illustrates the application of the Double Diamond method used during the workshop. The sections that follow detail the process and findings of each stage of the workshop.

Table 2.

The Four Phases of Design Thinking Workshops with Caregiving Communities, Following the Double Diamond Model.

Workshops	Workshop 1 Discover	Workshop 1 Define	Workshop 3 Deliver	Workshop 4 Develop
Topic	DT overview; Empathizing with caregivers	Defining a key caregiving problem	Brainstorming caregiving interventions	Evaluating caregiving interventions
Method	Divergent thinking	Convergent thinking	Divergent thinking	Convergent thinking
Outcome	A list of caregiving challenges	A clear problem statement	A list of caregiving intervention concepts	A most promising caregiving intervention

Workshop 1: Discover

In the first workshop, we explained the purpose of the workshop series and introduced the Double Diamond model. Then, we began the first stage of the Double Diamond process (Discover) by asking the caregivers to think broadly about their caregiving experiences and challenges, using divergent thinking to empathize with them. The questions used during this stage were originally suggested by researchers at the Roybal Center, who have experience working with caregivers. They were further refined through a co-creative approach in a pre-workshop session with caregivers. The intention behind posing these open-ended questions was to facilitate the discovery phase of the Double Diamond model and stimulate participants’ thinking about their caregiving experiences and challenges. We asked open-ended questions, such as:

1. What are your primary challenges in providing care on a daily basis?

2. In your opinion, what is the most challenging caregiving task, and how do you handle it?

3. What type of support have you received in your caregiving?

4. What types of support are missing?

The ensuing conversation produced five common themes and 15 categories emerged across the three communities, including 1) caregiving tasks and associated challenges, 2) caregiving self-care, 3) information access and dissemination, 4) the values of community support, and 5) overcoming cultural limitations (see Table 3). Multi-racial, African American, and Latino American caregivers recognized a total of 16, 18, and 13 challenges, respectively. At each workshop, we summarized the categories as focused topics to further discuss the challenges and opportunities with the community.

Table 3.

Dementia caregiving challenges developed following divergent thinking as a means of empathizing with caregivers in the first workshop.

Overarching Theme	Caregiver Challenges and Representative Quotations
1. Caregiving tasks and challenges	Providing day-to-day care
	e.g., “Attention to the surrounding, monitoring the patient, cooking” [CG9]
	e.g., “My sister and I take turns, um, getting her almost every day from the nursing home, or we go and sit with her at the nursing home” [CG13]
	Dealing with never-ending caregiving tasks
	e.g., “Mastery of caregiver concept doesn’t exist! It is imaginary” [CG8]
	e.g., “I went through 12 years of it with my dad. This is not a job for one year or six months. This is going through 10, 15, 20 years, and it gets worse every year. You know, I donť want to downplay the severity of it. I want people to know that this is a full-time job with no end” [CG11]
	Keeping a person with dementia safe
	e.g., “My husband had orthostatic hypertension and was at high risk of falling…the risk to his physical body was always hovering” [CG2]
	e.g., “Being mindful, taking care of someone who needs attention” [CG6]
	e.g., “I had to make sure nobody gave my husband a hard time (and vice versa) in public because of his weird behavior from the dementia” [CG1]
2. Caregiving self-care	Resting from caregiving activities
	e.g., “Having more time for yourself is critical” [CG9]
	Dementia affects caregivers’ mental health
	e.g., “caregiving is draining if you don’t have support” [CG12]
	e.g., “I hide and cry because there’s nothing else that I can do” [CG11]
	Isolation and lack of social contact
	e.g., “I leave for an hour, and I have to come back. I canť go to my granddaughter's birthday party, or go shopping for two hours, or even take a walk for 30 minutes because, knowing my luck, my mom might have an attack and get upset” [CG11]
3. Information Access and Dissemination	Navigating system to access information
	e.g., “So, where to go to get information and how to navigate through the bureaucracies to get that information so that you can get the help that you need, um, to take care of your loved one” [CG8]
	Learning curve and confusion associated with information
	e.g., I’m finding that there are a lot of resources, information out there, uh, but sometimes it doesn’t come together for you so that you can synchronize it and make it helpful.” [CG6]
	e.g., “I know how to use a computer like she said. But when you go to the computer, and you’re trying to get information, it’s so confusing” [CG11]
	Equal Access to Information
	e.g., “I went through months of trying to find something, and finally, by the stroke of luck, I called up Lifespan, and I was able to get mom on Medicaid. These are things that should be documented somewhere so that people can know that that’s one avenue that you can go” [CG13]
	e.g., “Feeling of being dismissed by the doctor […] I have a feeling, like, for my mom, it’s like we get information, but it’s like in dribbles, whereas the next person might have a tsunami of other information poured out at them” [CG7]
	e.g., “For whatever reason, the doctors, just don’t give free-flowing information to us about different resources or different medications that could cause side effects” [CG8]
4. Community Support	Providing Support through Communities
	e.g., “You could have many satellite support groups throughout your churches, throughout your organizations, where people could actually come together and actually see one another, and actually get hands-on from professionals that are out there” [CG10]
	e.g., “Being able to hear the stories, being able to hear the ideas that are out there that everyone has, it opened up my mind to know that there are a lot of possibilities out there for us as a community.” [CG6]
	Having a secondary caregiver
	e.g., “Inviting next-door neighbor to help!” [CG9]
	e.g., “I need someone to just give me two hours so that I can maybe take it easy one afternoon!” [CG14]
	Providing Emotional Support
	e.g., “So, sitting around with people who are just like you, going through similar situations, is very valuable than any book I can read.” [CG8]
	e.g., “Being a care partner, you just feel like you’re in this bubble, nobody else is there […] But to be able to hear others’ stories, even those that aren’t as yours, to be able to know that there’s somebody else out there, that every day you wake up, somebody else is waking up with the same challenge in their own way.” [CG9]
5. Overcoming Cultural Limitations	Understanding the culture
	e.g., “The person might not be able to understand her culture because she wants to eat only certain things. You know how sometimes they [caretakers] wanna feed them something else? “Oh, they need to eat vegetables.” Well, my mom doesn’t want vegetables. She wants frijoles and Arroz, you know” [CG14]
	Cultural barriers
	e.g., “It’s an expectation, again from our culture with regards to daughters primarily being that liaison for family. Um, you know, whether it’s because, the- the mindset of women are caretakers, even though, again, that’s a very, a positional view. That’s how it is where I am” [CG12]
	Language and technology barriers
	e.g., “That’s why I have to be very cautious on who I bring in because my mom, she understands a little bit of English, but she doesn’t carry on a conversation” [CG11]
	e.g., “I speak English, and I- I can handle a computer. I can’t imagine someone who doesn’t have- doesn’t speak English and doesn’t know how to look on a computer for these services” [CG13]

Workshop 2: Define

In the second workshop, we introduced the second stage of the DD model (Define) and used convergent thinking and prioritization techniques to review the themes to define the right problem. The caregivers were given a list of criteria (such as the problem is not caregiving-related, the problem is not worth tackling, the solution exists for this problem, etc.) to guide them in eliminating items from Table 2 that were perceived as least critical. They agreed on a shorter, prioritized list of needs to be addressed through caregiving interventions, which led to identifying a specific problem statement that was common across the three groups: ‘Providing comprehensive and accessible caregiving information and support is a crucial component for caregivers and the individuals they care for throughout the entire spectrum of dementia, ranging from the early stages of diagnosis to the late stages of the disease.’ We used slightly different version of this statement for each community to initiate and inform the next intervention exploration phase of DD.

Workshop 3: Develop

We started the third workshop by introducing the next phase of the DD model (Develop) and used divergent thinking and brainstorming techniques to facilitate the ideation of several solution-focused caregiving interventions. We guided the brainstorming session on potential solutions by asking questions such as ‘What types of interventions can potentially support caregivers with appropriate resources/information?’ The caregivers generated 14 (year one), 17 (year two), and 12 (year three) interventions they felt would address their problem of accessing dementia caregiving-related resources (Table 4).

Table 4.

Work examples of intervention concepts developed through divergent thinking by caregivers.

Problem Statement	Intervention Examples
P: Access to caregiving information and resources is critical to supporting caregivers throughout all stages of dementia. Q: What type of interventions can potentially support caregivers with appropriate resources/information?	Individualized support: This intervention involves providing personalized solutions for each family, based on their unique needs and circumstances. This may include customized care plans, counseling services, and other forms of support tailored to the individual caregiver's needs [Year 1].
	Reminders for each caregiving stage: This intervention involves creating tools that can be used by caregivers to find information and support at different stages of care. This includes personalized reminders, checklists, and other resources that help caregivers navigate the caregiving process [Year 2].
	Peer-mentoring program: This intervention involves setting up a peer-mentoring program for caregivers. This may include pairing new caregivers with experienced ones, providing personal advice and support, and connecting caregivers with an older sister or support person who can guide them through the caregiving process. [Year 1, 2].
	Professional support: This intervention involves providing online webinar series led by people with experience and/or professionals. This may include role-playing, show and tell, and hands-on demonstrations on how to deal with different situations that caregivers may encounter. [Year 2].
	Customer service type support: This intervention involves using different avenues such as YouTube, podcasts, hotlines, etc. to make resources available to caregivers in a way that is convenient and accessible to them [Year 2].
	Caregiver-focused solution: This intervention focuses on the caregiver's experience, needs, and feelings. This may include providing emotional support, respite care, and other forms of support that help caregivers manage their caregiving responsibilities while also taking care of themselves [Year 3].
	Personalized Care Coordination for Dementia Caregivers: Providing caregiver with access to liaisons, advocates, or care managers can help address their unique needs, such as providing a helpline in Spanish, scheduling appointments, and obtaining relevant information [Year 3].

Workshop 4: Deliver

We introduced the last phase of DD (Deliver) to validate the caregiving conceptual solutions, using convergent thinking and prioritization techniques to narrow down the intervention concepts. We provided several criteria to facilitate the convergence process, including the novelty, thoughtfulness, and relevance of each intervention concept to caregiving. Caregivers collectively converged their ideas to select the most promising intervention according to the introduced criteria by the end of each workshop (Table 5). Interestingly, we found the most critical need was identical across the three groups of caregiving communities: ‘Establishing a multi-faceted support system for caregivers, which includes a comprehensive care and peer-support program (i.e., professional care teams and other caregivers)’. A support program would offer a multifaceted approach to address the varied and intricate caregiving challenges, providing personalized and timely connections with professionals and fellow caregivers, thus empowering caregivers to navigate the caregiving journey with confidence and resilience.

Table 5.

Examples of the most promising interventions identified in the Deliver stage of the DD process.

Workshops	Final Interventions
Year 1	Providing a comprehensive orientation program to new caregivers, including universal care, individualized support, and person-centered care.
Year 2	Implementing a peer-support program to create partnerships with other caregivers, such as a peer program, webinar series, or podcasts.
Year 3	Establishing a care team/peer group that the family can connect with at the time of diagnosis, such as a programs network group, doctors, and mentors.

Discussion and Contribution

Integrating the DT framework in CBPR resulted in obtaining comprehensive data from diverse caregiving communities. The adoption of this approach enabled the researchers to gain a comprehensive understanding of the complex and multifaceted challenges that caregivers face across various stages of dementia care. Researchers were able to gain caregivers’ insights into the specific limitations of the healthcare system and caregivers’ vision for optimal support. By engaging with the caregivers, the researchers identified potential areas for intervention and collaboratively designed solutions tailored to the individual, organizational, or community levels. The divergent and convergent modes of thinking proposed in the Double Diamond framework enabled caregivers to collectively make decisions on the issues that mattered most to them, as well as co-create interventions that could support them all. Below, we summarize our discussion on the implications of DT (the Double Diamond framework) in CBPR into three major categories.

Uncovering Overlapping and Distinct Challenges in Diverse Communities

The thematic analysis of the qualitative data from the workshops provided a comprehensive understanding of the common and unique challenges encountered by caregivers in their daily lives, along with diverse strategies to overcome them. By systematically applying empathy, which involves the active use of empathy in all stages of DT, and employing divergent thinking, particularly in the discover and develop phases of DT, our study uncovered significant disparities in caregiving experiences across three diverse communities. These disparities included differences in cultural beliefs regarding dementia management and familial caregiving obligations, which have been previously observed in research (Dilworth-Anderson et al. 2002). For instance, despite all three communities encountering the demanding nature of primary caregiving responsibilities, Latino caregivers encountered distinctive cultural obstacles, and Black caregivers shared experiences of health disparities and inequitable access to healthcare systems. Our findings align with previous studies (Coalition 2021), indicating that family caregivers from underrepresented groups may find themselves performing unique tasks beyond providing primary care (i.e., ‘You know, paperwork, processes, documentation, follow-up phone calls. And so, many times, you know, to ease the situation, you’re making that, uh, financial commitment’ [CG12] or ‘My mom is in social security. By the time she has dementia, I couldn’t take the power of attorney because she wasn’t in the right mind to do it. How can somebody help me with this?’ [CG13]). Furthermore, racially and culturally diverse caregivers may face unique challenges associated with cultural incompetence perpetuated by healthcare, healthcare system, and dementia-related professionals (i.e., ‘The person [referring to a nurse or caretaker] might not be able to understand her culture because she wants to eat only certain things. You know how sometimes they wanna feed them something else? ‘Oh, they need to eat vegetables.’ Well, my mom doesn’t want vegetables. She wants frijoles and arroz, you know’ [CG14]). Similarly, these caregivers may face challenges in their own community due to cultural expectations (i.e., ‘Being Latino, there is a responsibility for me because I’m the daughter, which is sad because I don’t think that’s right nowadays. It’s easy for everybody just to push my mom onto me.’ [CG12].

It was through the convergent thinking mode and the consistent application of the framework across all communities that we were able to identify the most pressing challenge shared by all communities: accessing caregiving information and support. All caregivers concurred on this statement as a fundamental and pressing concern for caregivers. This discovery showcases the efficacy of the Double Diamond model for identifying the correct problem across the three community groups prior to commencing the intervention explorations. Adopting such an approach has the potential to culminate in a substantial and innovative contribution that advances the knowledge of the field (Lovitts 2005) and serves as a catalyst for generating novel insights and breakthroughs (Abookire et al. 2020). During the intervention exploration stages of the Double Diamond model (develop and deliver), we observed the same phenomenon. Through the convergent thinking mode, caregivers collaboratively generated several novel interventions and were able to identify the most promising intervention (establishing a multi-faceted support system for caregivers) that was remarkably consistent across all community groups.

Translating Findings into Actionable Solutions for Diverse Communities

Study findings demonstrate the effectiveness and efficacy of using DT (the Double Diamond framework) in enhancing CBPR as a catalyst for collectively exploring caregiving challenges through empathic activities and rapid exploration of novel interventions. This approach has the potential to drive meaningful and enduring transformations in caregiving practices, while also generating research agendas and actionable items that can be practically implemented in the field.

Previous studies have demonstrated the successful application of DT in the early pre-trial stages of healthcare intervention design, enhancing innovation, efficiency, and user satisfaction by addressing the needs of patients and care providers. (Altman et al. 2018; Luna et al. 2017). Compared to the CBPR approach, the DT emphasis on innovation and the expedited divergent-convergent process facilitate rapid prototyping of ideas, enabling prompt feedback and iterative refinement of interventions (Chen et al. 2020).

In our study, the process of divergent exploration within the solution space yielded fresh insights into co-developing novel intervention directions with the community. Each of these directions has the potential to serve as the foundation for a new, longer-term research program. As Ward (2015) noted, ‘Designers materialize thought in order to push the boundaries of knowledge.’ This approach opens up new avenues for innovative interventions that extend beyond quality improvement initiatives and ‘helps to envision new possibilities to enable people to improve health’ (Noël and Frascara 2016). On the other hand, the convergent thinking mode facilitated the prioritization and refinement of potential interventions. This was achieved through enriched co-conversations and co-investigations of issues with the community, aligning with the principles outlined by Sanders and Stappers (2008).

The co-creative process employed in DT not only fosters a deep understanding of pressing community needs but also enables collective exploration of potential directions for enhancing the caregivers’ problems. Involving the community in the development and proposal of solutions not only enhances the efficacy and long-term adoption of interventions, but also ensures that solutions are rooted in the community’s values and needs, thus increasing the likelihood of effectiveness and sustainability (Schmittdiel et al. 2010). Moreover, adopting a community-engaged, bottom-up approach to research project development is likely to improve participation and enthusiasm for an intervention compared to the traditional top-down approach where researchers may identify an agenda that does significance of gathering data from diverse not mirror the community’s actual needs (De Las Nueces et al. 2012).

As outlined in the methodology section, during years 1 to 3, the workshops hosted investigators from 12, 30, and 38 institutions. These investigators primarily served as observers of the workshops, with the option to engage if they chose to do so. The DT workshops had a profound impact on the research agenda, leading to a consideration of more actionable interventions based on community involvement. This impact is evidenced by the receipt of 67 well-crafted letters of intent proposing new pilot projects from 26 investigators over the course of three years. These proposals showcased a deep understanding of the challenges faced by caregivers, affirming the effectiveness of the DT approach in generating context-specific solutions to enhance caregiving mastery. These proposed interventions spanned various intersecting categories, including specific caregiving populations (e.g., racial/ethnic groups) and particular caregiving challenges (e.g., self-care), further underscoring the approach’s efficacy.

Designing Tailored Interventions that are Responsive to the Context-Specific Needs

The DT framework, with a particular emphasis on empathy, offers a unique opportunity to bridge the gap between needs assessment and pilot testing interventions (Chen et al. 2020). Through engaging diverse experiences in the problem identification phase, co-creation of interventions can take place that address the unique expectations and needs of the target population. An important aspect of the DT model, particularly the Double Diamond framework, is its emphasis on the divergent-convergent modes of thinking that enables the development of interventions responsive to the evolving needs of the community. Our workshops highlighted the groups of participants, including dementia caregivers with varying demographic attributes, beliefs, and behavioral characteristics. These groups identified challenges at personal, cultural, and societal levels that require the development of interventions that recognize unique needs and emphasize the diversity of care. To address the heterogeneity of the target population, interventions should be tailored to the context-specific needs of specific ethnic groups, as a ‘one size fits all’ approach may not be effective.

While employing DT across diverse communities can identify challenges and solutions unique to different diverse stakeholder groups and pinpoint higher-level community issues and related interventions through convergent thinking (i.e., offering comprehensive and accessible caregiving information and support), it is imperative to co-develop tailored solutions that are adaptable to the ever-changing personal, cultural, and societal needs of these diverse communities. This approach necessitates the examination of rich qualitative data generated within the community through divergent thinking and meticulous attention to personal narratives interwoven with the community’s distinct cultural, social challenges, norms, and constraints. In our study, while the provision of support to new caregivers emerged as a high-level solution for the entire caregiver community, the specific interventions co-developed with each community exhibited nuanced requirements for customized delivery modes. For instance, the multi-racial community favored a universal or person-centered care model (i.e., a comprehensive caregiving clinic), the African American community preferred a peer-support program in collaboration with fellow caregivers (i.e., gatherings, broadcasts, etc.), and Latino American caregivers leaned towards a comprehensive program that encouraged the involvement of Latino families (i.e., a mentorship program supporting all family caregivers).

We anticipate that incorporating the DT model (the Double Diamond framework) into CBPR can serve as a complementary approach for producing innovative outcomes. Design thinking can be particularly useful in the early stages of participatory research initiatives with communities when needs assessment is required, or when problems are not well-defined due to limited understanding of situations or unsuccessful attempts to problem-solve (Cross 2017). Design thinking can assist in shaping the termination phases of a community-based initiative by collaboratively creating practical solutions to problems that originates from the core of the community (Chen et al. 2020). The framework can serve as a catalyst to inform pilot studies and proof of concept interventions with communities, which can be further validated through larger trials and integrated as part of continuous CBPR efforts with diverse communities. In particular, DT can be used explicitly in the early phases of participatory research initiatives (i.e., pre-trial design) to address ill-identified problems or generate critical insights through qualitative evaluation of generated concepts results in interventions that are more likely to be accepted and embraced by the community.

Conclusion and Future Work

Our study highlights the potential of using DT (the Double Diamond framework) as a promising complementary adjunctive framework to CBPR to generate innovative interventions that are culturally informed and sustainable. We posit that DT can serve as an inaugural phase within the realm of CBPR, particularly in the context of fostering community engagement for the identification of pressing issues and the generation of preliminary intervention concepts. Through a series of DT workshops conducted with three distinct community groups (multi-racial, Black, and Latino) in the context of dementia caregiving, we gained a comprehensive understanding of the diverse community needs, expectations, and laid the groundwork for co-created caregiving-specific interventions. Our findings substantiate the benefits of the framework, providing researchers with valuable insights into everyday community needs and enabling them to co-create innovative solutions that are responsive to the dynamic needs of the community. We have discussed the significance of integrating the DT framework in CBPR, specifically in terms of 1) revealing common and distinct challenges experienced by diverse communities, 2) translating these findings into practical solutions, and 3) designing customized interventions that are responsive to the needs of diverse communities.

While further endeavors are essential for the substantive implementation of these solutions, it is noteworthy that DT, characterized by its expeditious problem-solving framework, has the potential to serve as a catalyst for initiating the problem-solving process. The framework can inform pilot studies and proof of concept interventions within communities, subsequently undergoing validation in larger trials and integration as part of ongoing CBPR initiatives with diverse communities. Subsequent research and initiatives can then build upon this foundational groundwork. In our future endeavors, we will continue to utilize the DT framework within the context of dementia caregiving, with a specific focus on marginalized and underrepresented minority populations.