Context and Approach
The world is facing an unprecedented refugee crisis, with over 55 million people currently forcibly displaced and of international concern (UNHCR, 2015). The U.S. has the largest refugee resettlement program in the world (UNHCR, 2014) and approximately 14 % of the population was born overseas (Pew Research Center, 2015). Research on resettlement with refugee populations have identified highly elevated risk for mental health concerns (depression, anxiety, PTSD) resulting from factors including experiences of trauma, violence, and adversity in their home countries, during migration, and after resettlement (Murray, Davidson, and Schweitzer, 2010; Silove 2012; Scuglik et al, 2007). Acculturation and isolation stressors can affect overall mental health and quality of life after resettlement (Ellis, Murray, & Barrett, 2014). At the same time, these populations are dramatically less likely to seek or engage Western clinical modes of treatment due to linguistic barriers and distinct cultural conceptions of mental illness and orientations toward treatment (Murray et al., 2010; Tribe 2002; Weine et al., 2000). There is pressing need for new approaches to research and community engagement to ensure culturally appropriate preventive mental health interventions are available and effective when working with these underserved communities (Weine, 2011).
The family system can provide a powerful resource for family members experiencing the challenges of adjusting to life in another country, and represents a meaningful focal point for many migrant communities. There is increasing evidence that mental health of parents strongly influences the well-being of young children. Depression and anxiety in parents can negatively impact brain development of young children, with implications for learning ability, physical and mental health into adulthood (National Research Council and Institute of Medicine, 2009). This suggests the importance of promoting healthy families for both short- and long-term benefit. However, there are few evaluated interventions for refugee families given the overwhelming emphasis in refugee resettlement on individual, pathology-focused interventions (e.g. individual PTSD treatments; Weine, 2011).
The often high degree of resistance to Western clinical mental healthcare among immigrant/refugee families, and its impact on parenting, signals a need for dramatically new approaches, methods and tools for supporting mental wellness that are at once effective and culturally appropriate (Miller, 1999; Weine et al., 2000). There are few empirically supported interventions for diverse refugee populations, with little to guide effective practice to address the unique stressors and strains for these families (Murray et al., 2010). Strengths-based and resilience-focused mental health programs are gaining ground on the historically dominant Western deficits model that defines people from a refugee background as traumatized victims (Hutchinson & Dorsett, 2012; Weine, 2011). With a dearth of evaluated family interventions effective with refugee populations, narrative therapies represent a promising area for further investigation (Murray et al., 2010). Narrative therapy has been evaluated as an important tool in the treatment of trauma (Busch, 2007; Borden, 1992; Neimeyer & Stewart, 1996; ) and in research with diverse populations (Suzuki & Ponterotto, 2007; Marlowe, 2010; Neuner, 2004; Salloum, 2009).
Our research involves developing a visual narrative intervention based on approaches that research suggests have greater effectiveness for immigrants and refugees: a resilience framework, community collaboration, cultural relevance and acceptability, and adaptability (Weine,2003; Costantino et al, 1994; Simich et al, 2009). Co-design of the tools employed situates affected community as expert partners in dialogue with biomedical practitioners, health communication specialists, and active promoters of ‘‘community mental health competence’’ (Campbell & Burgess, 2012).
Innovation
This research is novel in several regards.
- The use of visual narratives in the promotion of health is not entirely new, and there is strong evidence for their value in working with linguistically diverse, limited literacy, as well as general populations (Valle et al, 2006; Lee et al, 2013; Mayer & Villaire, 2007). However, in almost all cases graphic narratives are employed as a mechanism for clinical outreach and to accommodate varying levels of health literacy. They are conceived centrally as a means of translating and/or explaining western clinical understanding of health practices. Our project expands on this evidence by leveraging graphic narratives as an intervention that is meant to source community as well as professional understandings of mental wellness. The community co-developed narratives will be used in facilitated workshops to support community members in their adaptation to their current cultural, social, and material environment. An important premise of our approach is the need to develop interventions that take place in trusted and familiar settings for community members. This is vital given the extremely low rate of community members engagement with clinical resources, and mental health resources, in particular.
- The study will offer evidence on the effect of community-based and supported peer to peer approaches that begin with a focus on stressors and coping strategies identified by the target population itself, and shared within non-clinical community settings. By providing evidence on the effect and ethical value of community-engaged approaches in working with people from a refugee background, we hope to influence decision-makers and practitioners at various levels and arenas including public health, education, social services, healthcare, and research.
Approach
In the coming year the project will develop an additional two-three co-designed graphic-novel style stories of refugee/immigrant family experiences. The stories will be embedded in an mHealth tool for facilitating peer to peer groups in community settings. We will evaluate the use of this tool to facilitate discussion of factors contributing to family and parenting stress and modes of responding to them (clinical, traditional, religious, adaptive, etc.) through a mixed methods design.
Community Based Participatory Research: This project builds upon established working relationships among the various participants. From its inception this project has been conceived and developed in close collaboration among the interdisciplinary team at UCSD and United Women of East Africa Support Team (UWEAST). For over 15 years, UWEAST leadership has been effectively engaging the East African community, which constitutes a large and growing minority group in the U.S. (Office of Refugee Resettlement, 2014, Terrazas, 2009), and will be the target migrant population for the current study. Also involved are: La Maestra community health center, a leading service provider for the East African community members; specialists in refugee mental health at the University of San Diego’s Family and Mental Health Program; and key religious groups and leaders within the East African communities.
Our project activities are guided by the ethical and practical principles of Community Based Participatory Action Research (Godin et al, 2007; Agency for Healthcare Research and Quality, 2003). While the project leaders bring distinct experience and expertise, all key personnel will be engaged in collaborative oversight of all components of the project. Core principles that guide our collaboration are:
- Community members serve as partners, not just subjects;
- Activities and goals will be designed and assessed primarily in terms of benefits to the community
- We strive to recognize and validate diverse forms of community and expert knowledge as resources for creative approaches to health prevention and care;
- Community members are directly engaged with research at all stages and be joint partners in guiding the use of what it produces.
Regular face-to-face meetings situated within the targeted community will be held throughout the project to accommodate linguistic diversity and varied literacy level of participants and will entail multi-lingual translation. UWEAST utilizes this approach for their ongoing community engagement and programming and will be the process guiding the shared project development of the current research. The team will engage in iterative evaluation of projects goals with a social ecology model (Bronfenbrenner, 1999), critically reflecting on potential effectiveness and influence of our efforts/activities for contributing to an inclusive culture of health at the levels of the individual, the interpersonal, the organizational, the community, and public policy. We believe this is a core practice for ongoing articulation of a shared theory of change—something too often under-articulated or ignored in both research efforts and community advocacy.
Co-creating the Visual Narratives: The visual narratives that form the interface of the mHealth tool are developed through a series of participatory workshops conducted at UWEAST. This process, piloted in the development of the first narrative, entails an iterative process beginning with theme development and storytelling workshops involving community members. Community and research group discussions center on the challenges that impact family mental wellness, and the strategies that group members have tried to resolve them—both successful and ineffective. The focus is on opening dialog rather than determining singular solutions. Story development workshops are adapted to the needs of the multilingual participants who are representative of the community’s overall low literacy rate, as well as low levels of English language proficiency. As such, the process involves orally based collaborative story development aided by translators. The experience of the first narrative development supported a key premise of the project design: community engagement is reinforced by the high value placed on storytelling and visual communication as vectors for sharing advice, ethical values, beliefs, and behaviours within traditional East African culture (Bentley & Wilson Owens, 2008; Scuglik et al, 2007).
The process employed in the participatory workshops are designed to yeild fictional stories based on the shared experiences and concerns of the community. Participants are engaged in third-person modes of storytelling, with anonymous characters. This allows the sharing of experiences in ways that are framed in more anonymous and generalizable terms. This allows for the discussion of concerns that might otherwise be avoided due to issues of sensitivity or stigma. Workshop leaders aid participants in structuring the narratives to highlight key points at which readers/viewers will be prompted to consider the alternative behaviors and responses that characters might pursue.
Next, the narrative artists/designers are employed to create visual interpretations of the stories. The graphic narratives are further reviewed in an iterative process through focus groups drawn from UWEAST membership, alongside experts in narrative therapy and refugee mental health and the artists/designers. Expert reviewers include John Kuek, PhD, MTFI (the first therapist of East African background in the County of San Diego, CA), Sol D'Urso, MA, MFT (a therapist with extensive experience working with refugee/immigrant populations addressing anxiety, stress management, trauma, immigration/acculturation, child and adolescent problems and relationship issues), and Kate Muray, PhD, MPH (co-investigator).
The first narrative, which was recently completed, focuses on the particular concerns and conflicts that arise surrounding children’s use of mobile devices and social media platforms. While some social media use issues are no different from those affecting the general population, others involve stresses and challenges that are particular to the cultural and linguistic differences experienced within recent immigrant families and communities. Likewise, they often demand different strategies and responses to maintain family cohesion and mutual understanding.
The team is currently developing two additional graphic narratives on topics selected by UWEAST membership. One relates to concerns that arise in parents’ communication with their children’s schools, and the other addresses ways that parents communicate with their children about their relationships with peers and friends from outside the East African community.
The mHealth App: The visual narratives will be incorporated into an mHealth app designed as a sounding board for facilitating narrative therapy sessions. The app will offer a number of important affordances that printed visual narrative do not provide:
- Multilingual options for the text bubbles
- Option for audio interface—providing access for participants with low literacy levels
- Allowing written and voice input to discussion forums
- Direct links to community and clinical resources
- Opportunity for participants to share responses to the stories and to review them outside of the session, and with other family and community members.
The majority of mHealth products targeting mental health currently being introduced are conceived for individual use and intended to support [a] illness self-management and relapse prevention; [b] promoting adherence to medications and/or treatment; [c] psychoeducation, supporting recovery, and promoting health and wellness; and [d] symptom monitoring (Naslund et al, 2015; Price et al, 2014; Kazdin & Rabbitt, 2013; Bacigalupe & Cámara 2012). Our app follows a distinct set of objectives. It is not conceived as an alternative to or adjunct to traditional clinical treatment (such as CBT), nor is it intended for use mainly by individuals and on mobile phones or home computers. Rather, it is being designed primarily as a tool for facilitating series of small group interventions/sessions, and secondarily as a tool for sharing strategies and experiences outside of sessions; making available vetted information, and directing participants to clinical and community resources.
For the purposes of the pilot study we will be developing the app by adapting existing open source resources. We will employ elements from interactive e-books with designs of blog and discussion forums. Our intention is to have the project’s software remain an open source platform that can be adapted by agencies working in other regions and with diverse refugee/immigrant communities.
Intervention Format: The intervention includes 6 weekly 1.5 hour group sessions and is based on previous strengths-based family therapy programs and guidelines (e.g. Weine et al., 2003; Weine, 2011). Parts of the intervention are delivered separately to parents and children, with parts delivered jointly—a process that was determined to address the manner in which acculturation demands and paces differ by generation, and based on participants’ indications of their likelihood to discuss various concerns in peer vs family settings. The primary goals of the program are to increase understanding and empathy within families, promote positive communication strategies, increase shared problem-solving skills for addressing current stressors within the family, and enhance individual stress management and emotion regulation strategies. In the first year of funding and alongside narrative development, we will further develop and refine the intervention manual.