Be Humble, Learn, and Care: Culturally Responsive Evidence-Based Practice PDF

Be Humble, Learn, and Care: Culturally Responsive 9 Evidence-Based Practice Shahla Alai-Rosales, Malika Pritchett, April L...

Culturally Responsive Evidence-Based Shahla Alai-Rosales, Isabel Cunningham, 9.1 Be Humble, Learn, and Care: Culturally Responsive Evidence-Based Practice In the midst of our culturally abundant and com- plicated world, our goal as interventionists is to contribute to the betterment of the lives of all the children and families we serve. As the world changes through migration and the lifting of oppressive structures, greater numbers of people who are different from one another will interact and negotiate the process of living together and supporting one another. Interventions to help people with autism are highly interactive acts that enter into some of the most central parts of living: communication, social interactions, and activity engagement. Furthermore, the process of behav- ior change involves tremendous collective effort over time in each of these areas of life. Everyone, S. Alai-Rosales (*) · A. Linden · I. Department of Behavior Analysis, University of North Texas, Denton, TX, USA e-mail: [email protected] mon or unheard of, depending on cultural groups in which one identifies, to experience both privi- lege and oppression. Cultural groups are delin- eated in many ways: by race, ethnicity, religion, class="__cf_email__" data-cfemail="97faf6fbfefcf6e7d7fce2b9f2f3e2">[email protected] economics, gender, neurology, physicality, abil- ity, sexuality, and more. As the world shifts and the voices of people from different groups are able to participate in societal discourse, we find to Springer Nature Switzerland AG 2022 151 Behavior Analysis Interventions for Autism, Autism g/10.1007/978-3-030-96478-8_9 S. Alai-Rosales et al. moil, we also see the advent of new ways of addressing our human condition. A scientific approach to human behavior, the systematic study of interactions and patterns between our behavior and our physical and social environ- ments, is an advancement in the evolution of our species (Skinner, 1953). There is no doubt that this science has led to a considerable amount of evidence that suggests ways to accelerate and decelerate behavior that improves the lives of children with autism (e.g., Leaf et al., 2022, this volume). The cultural tensions lie in the condi- tions under which we change behavior and what behaviors are changed and when; in other words, sought-after behavior change may or may not be a contextual (e.g., cultural) fit. And, above all, there is tension around who is directing the changes and why and how they are making decisions. The difficulties we see in intervention and practice are part of the broader conflicts we see in the world all around us; cul- tural values about change are colliding in hard and evolutionary ways. The challenge is to evolve effective, care- based interventions that foster wellbeing for all without excluding, hurting, alienating, or margin- alizing. This will involve imagining and shaping a broader and encompassing set of values that contain an ethic of compassion for people from a variety of cultural contexts (Ala’i & Re Cruz, 2021; Pritchett et al., 2021). This includes, but is not limited to, the agreement that there is merit and wisdom in recognizing our growing interde- pendence as a species on a shared biosphere, that each child born into the world is a responsibility of the collective of humanity, that each child has the right to education and happiness, and that we are in the process of learning how to value and nurture one another in equitable and just ways (e.g., Karlberg & Farhoumand-Simms, 2006; Maparyan, 2012, b; McGoldrick & Hardy, 2019; UN General Assembly, 1948). These are the val- ues that direct an examination of how we engage in evidence-based practice across cultural contexts. For the interventionist, the task is to consider research evidence in the context of a specific child and their cultures. Generally, this involves Responsive Evidence-Based Practice 153 responsible and responsive care (e.g., Slocum et al., 2014; Smith, 2013). In the seminal paper on evidence-based practice, scholars from some of the most respected medical institutions in the western world wrote about the increasing ten- sions in the medical community regarding the role of evidence and the role of clinical expertise (Sackett et al., 1996). They emphasized the rela- tionship and importance of both sources: Good doctors use both individual clinical expertise and the best available external evidence, and nei- ther alone is enough. Without clinical expertise, practice risks becoming tyrannised by evidence, for even excellent external evidence may be inap- plicable to or inappropriate for an individual patient. Without current best evidence, practice risks becoming rapidly out of date, to the detriment of patients. (Sackett et al., 1996, p 72) They also discuss the interaction between the two: Evidence based medicine is not “cookbook” medi- cine. Because it requires a bottom up approach that integrates the best external evidence with individ- ual clinical expertise and patients’ choice, it cannot result in slavish, cookbook approaches to individ- ual patient care. External clinical evidence can inform, but can never replace, individual clinical expertise, and it is this expertise that decides whether the external evidence applies to the indi- vidual patient at all and, if so, how it should be integrated into a clinical decision. Similarly, any external guideline must be integrated with indi- vidual clinical expertise in deciding whether and how it matches the patient’s clinical state, predica- ment, and preferences, and thus whether it should be applied. Clinicians who fear top-down cook- books will find the advocates of evidence based medicine joining them at the barricades. (Sackett et al., 1996, p 72) Evidence-based practice is a balance and synthe- sis of research evidence and clinical expertise. Slocum et al. (2014) wrote about how this par- ticular perspective on evidence-based practice applies to practice of behavior analysis. They also highlighted the importance of considering the client values and context: Evidence-based practice of applied behavior anal- ysis is a decision-making process that integrates (a) the best available evidence with (b) clinical expertise and (c) client values and context. This S. Alai-Rosales et al. 9.2.1 The Research Evidence Base a behavior it is not lim- Generally, research in autism is conducted in uni- versities and research centers. Researchers engage in a lengthy process of identifying for clients monitoring, research questions, obtaining human rights approval for the research, obtaining participant consent, conducting the research, preparing a report of the research findings, and submitting and analyzing is relevant, the findings to scientific journals. If peers find the research meets current scientific standards and has merit to contribute to our understanding of intervention, it is published and becomes part of includes cli- the research base. Journals, libraries, and institu- tions make this information available to the prac- ticing interventionist in different ways (e.g., through subscriptions, courses, workshops). Within the last two decades, concerted efforts have increased to make the research evidence more accessible and to provide a context for syn- thesizing a great deal of information. For exam- ple, there are articles that prepare practitioners to locate and find relevant research (e.g., Carr & Briggs, 2010; Gillis & Carr, 2014), research clearinghouses (e.g., National Autism Center, 2015; National Professional Development Center, 2014), and textbooks and volumes that consolidate and summarize findings for both pro- fessionals and parents (e.g., Leaf et al., 2022, this volume). Part of our ethical and professional responsi- bility is to demonstrate knowledge of the basic principles of behavior change and to keep abreast of research developments as they relate to our specific areas of practice. To ensure that there is a minimum level of competence, interventionists are required to have degrees, certifications, and, sometimes, licenses. All of this requires diligence and a tremendous effort on the part of the practitioner. In relation to culturally responsive interven- tions, there are several issues to consider about this research base. First, it is only within the past few years that professional organizations have Responsive Evidence-Based Practice 155 Pritchett et al., 2021). The second point is the degree to which the research base has been par- Analysis ticipatory is limited (Fawcett, 1991; Pritchett et al., 2021). That is, research participants are not collaborators in the process of setting and carry- ing out the research agendas. Furthermore, nei- ther the Association for Behavior Analysis International nor the Behavior Analyst Certification Board set disciplinary pre- or post- educational requirements regarding cultural diversity and practice for professionals in behav- ior analysis in order to teach leaders, researchers, or practitioners how to interact with culture and context, a core feature of evidence-based practice in behavior analysis (Slocum et al., 2014). Finally, translational research is not always con- ducted before publication; in fact, it is often con- sidered a separate research type. While this is understood from the perspective of researching scholars, one may argue that research conducted in laboratory settings, as brief designs, etc., lacks cultural contextual fit or at the least has not been assessed beyond these specific contexts. In other words, generalizability of such research is not truly present. In summary, the research base is primarily created, produced, and implemented by a rela- tively homogeneous group, and there are no for- mal training requirements for behavior analysts regarding cultural values and context. From this, we can conclude that we are only seeing a portion of the questions, methods, opportunities, frame- works, and outcomes possible. 9.2.2 Developing a Cultural Wisdom Base Fortunately, a practitioner with clinical expertise is in a unique and important position and can bring wisdom to the process of contextualizing the research base with a given child and their family’s needs, priorities, goals, and values (Slocum et al., 2014; Leaf et al., 2016). To under- stand the expansiveness and implications of the practitioner’s role in contributing to the progres- sion of the evidence-based practice, we will share a description of a paradigm shift occurring within S. Alai-Rosales et al. and action for a common product or purpose that paradigmatic shifts occurred and innovations were able to surpass all previous technologies. Boland and Tensaki also described those knowl- edge groups that are unsuccessful; such teams are characterized by a lack of skills in self-reflection and narrative, difficulty reconciling one another’s priorities and projections, frequent ignoring, dis- counting, and a lack of appreciation for the per- spective of one another as well as certitude that everything is known and correct within their own particular frameworks. These barriers limit cre- ative problem-solving and advancement. At present, the desired outcomes are increased quality of life and enhanced wellbeing of the children and families we serve, now and across time. The perspective taking, sharing, and mak- ing should occur within our intervention teams of diverse people with different lived experiences and vantage points. Each interventionist comes with a particular set of learning histories and, hopefully, a deep knowledge of the evidence base and its contextual strengths and limitations. Each family and child come with a set of learning his- tories developed within their cultural communi- ties. All cultures have developed funds of knowledge, values, and priorities and have had particular positions within the social structures of society (e.g., Moll et al., 1992). Each of the posi- tions is the product of generations of societal structures and individual and group learning his- tories that place people of different cultural groups in relative advantage and disadvantage. These conditions create a compelling need for increased cultural responsiveness and clinical wisdom in interventions, especially with cultures often at a disadvantage, that is, people that are not from white, affluent, Global North, Christian cul- tures. This point is amplified in social and aca- demic discourse as well as systematic qualitative studies with people of other cultures. Neither interventionists nor the families know the outcome of the intervention journey. Each is part of a dynamic system in which cultural boundaries and positions are always in motion (DelVecchio Good & Hannah, 2015). Each comes in with knowledge, values, priorities, and contingencies that are to be discovered, acted Responsive Evidence-Based Practice 157 the history in the context of humility). The call for responsive care was introduced in behavior analysis (e.g., Fong & Tanaka, 2013; Iwamasa, 1997; Iwamasa & Smith, 1996) and has increased in number (e.g., Fong et al., 2017; Miller et al., 2019; Zarcone et al., 2019) and has become more specialized since the March 2020 uprisings (e.g., Ardila Sánchez et al., 2020; Esquierdo-Leal & Houmanfar, 2021; Gingles, 2021a; Sadavoy & Zube, 2021). Wright (2019) published the first work specifically addressing cultural humility in behavioral practice. We start specifically with humility for several reasons. First, it is foundational in developing “third ways” in situations of uncertainty and ten- sion. Second, it is a prime example of how non- western frameworks can expand our way of navigating our shared world. It is both a useful concept for this particular situation and a way to understand that concepts and practices can differ across cultures; it is a concept that both teaches and exemplifies how cultural responsiveness can improve our ability to act toward the common good. Within a western context, the notions of humility are related to intellectual reasoning and decision-making and “… the correctness or wrongness of one’s beliefs, truth seeking, accep- tance of one’s fallibilities as knower/believer, and the nature of open mindedness occupy the center stage of discussions about humility at present” (Li, 2016, p.150). Within health care, including behavior analysis, there are also the added dimen- sions of personal and institutional accountability for power imbalances and the need to address these imbalances and inequities through critical analysis as well as the central role of openness to cultural diversity and ongoing learning about how to improve practice (Wright, 2019). In an exploration of the concept of humility, Li (2016) noted that the concept may run con- trary to other western cultural values, creating an ambivalence related to and in contrast with val- ues related to concepts such as assertiveness and self-confidence. Li contrasts this with eastern cultures influenced by Confucianism and high- lights some of the possible cultural differences. She looked at this across several quantifiable and S. Alai-Rosales et al. environments for a person or group of people. Oftentimes, the people who are the receivers of interventions are vulnerable, and other people are making decisions about what should be changed and how. When people express objec- tions to the status quo, there are discussions, tensions, divisions, and sometimes reconcilia- tions. Some of the controversies that directly intersect with culture are discussed in the emerging literature. For example, discussions relate to the use of aversive control (Morris & Hollins, 2021; Sidman, 2001; Singer et al., 1999; Van Houten et al., 1988), gender (e.g., Donovan, 2021; LeBlanc et al., 2020; Leland et al., 2021; Nordyke et al., 1977), race (e.g., Gingles, 2021a; Gingles, 2021b; Li, 2021; oli et al., 2021; Pritchett et al., 2021), indigenous peoples (e.g., Busch & Levasseur, 2021), inter- sectionality (e.g., Cirincione-Ulezi, 2020), eth- nicity (e.g., DuBay et al., 2018), religion (e.g., Aljohani, 2021), language (e.g., Baires et al., 2021), neurodiversity (e.g., Friedman, 2021; Iland, 2021: Kirkham, 2017), poverty (e.g., Uwayo et al., 2021), and commodification (e.g., Keenan et al., 2010). Sometimes the discussions are in other forms, such as podcasts. For exam- ple, Beautiful Humans (Gingles & Donovan, n.d.) and Shades of ABA (Bradley & Moore, n.d.) are two active venues that address specific challenges and biases in practice and research. Such venues have expansive representation and content that is not controlled by the dominant majority culture. It is important to note that the degree of gatekeeping, scrutiny, and peer review varies considerably in this emerging discourse. That is both the beauty and the tension. Social media and non-refereed publications have welcomed voices that are barred or inadvertently excluded from the discourse. The intention of peer review is to increase confidence that scientific commu- nication is credible and meets the standards of quality for discourse and experimentation in a given field (Kelly et al., 2014). It is difficult to have peer review in the area of cultural congru- ence of research practices because there are few “peers” in relation to cultural diversity. That is, the majority of the scientific “peers” are also Responsive Evidence-Based Practice 159 9.2.2.2 Learning Learning to be responsive to the unique needs of people requires comfort in provisional spaces and accessing bodies of knowledge production within and outside of the research evidence in intervention. This will require interacting with texts and articles on the topics from within the discipline (Ala’i & Re Cruz, 2021; Conners & Capell, 2021; Mathur & Rodriguez, 2021; Sadavoy & Zube, 2021) and outside of the disci- pline on topics such as critical race theory and disabilities (e.g., Annamma et al., 2016) and technology (e.g., Benjamin, 2013). It will also involve learning from other disciplines that have had a longer focus in this area (e.g., Lynch & Hanson, 2011; McGoldrick & Hardy, 2019). The topics to study and learn about will be directed by understanding the community you serve. That is, who are the members of the com- munity? Do all members of the community have a voice? Are there disparities or incongruencies reported in the literature about populations served in your communities? Are there groups barred from receiving services in your communities? Who receives services later? Do the demograph- ics of your staff match the demographics of the populations served? What are the concerns and tensions being voiced by and on behalf of the people you serve? How do those concerns inter- act with the research base? Ideally, such questions and learning should be part of our initial training (Mathur & Rodriguez, 2021; Najdowski et al., 2021) and part of ongo- ing practice. In the meantime, as a way of orga- nizing, communities of practice can be formed to study and systematically understand the complex information on cultural responsiveness and to make transformative changes in the way we engage in evidence-based practice (Anderson- Carpenter et al., 2014; LeBlanc et al., 2020; Miller et al., 2019; Wenger, 2000). Specific strat- egies are being developed to address approaches to training and culture that are specific to behav- ior analytic interventions (Mathur & Rodriguez, 2021) and address the distinct feature of a com- munity of practice committed to increasing cul- tural responsiveness (Miller et al., 2019). S. Alai-Rosales et al. expand your understanding, learn the parameters of social importance, and help you learn ways to include and tailor research evidence to meet the needs of the people you serve. of infor- Another area emphasized is the necessity of improving our interaction skills across cultures. How to communicate and have safe and progres- sive conversations with clients and peers of diverse backgrounds, values, and learning histo- ries is a complex skill and not an easy one to develop (e.g., Baires et al., 2021; Barrera & Kramer, 2019). Because culture is ever evolving and the learning process is ongoing, it will be perpetually uncomfortable. Conditions have to be created to practice the components of effective intercultural communication, to receive feed- back, and to improve. Essential to this process is understanding the power differentials that exist in the provider-receiver relationship and that these conditions require a humble posture and acknowl- edgement that the learning will be eternal (Baires et al., 2021; Wright, 2019). The community of practice is the group that can help create increased fluency and courage. Members can provide simu- lated practice and feedback of component skills, provide a forum for reflecting upon and generat- ing ideas to improve actual interactions, explore discomforts with the process, and generally nur- ture these developing skills by acknowledging effort and progress. The community can also identify intervention points that require improved communication to increase responsiveness to context and values. Conditions can also be created to better under- stand valued outcomes and how these relate to cultural context and the evidence base. We start with creating conditions for the people we serve to feel comfortable in the perspective sharing and making process. Among other things, it is impor- tant to remember that everyone is in the process of learning. Mistakes are part of the learning pro- cess. The hope is that mistakes are as benign as possible, do minimal harm, and are quickly repaired. Intentionality is necessary to learn in order to prevent similar mistakes from reoccur- ring moving forward. Each of us understanding and articulating our values and perspectives is a Responsive Evidence-Based Practice 161 Nurture Progress Here, the focus is on estab- lishing and developing ongoing methods to sup- port progress. The central considerations are clear and evolving goals, safe and progressive interactions, and multi-dimensional and multi- sourced measures of progress. One of the first steps is to create a format for program evaluation, a widely underutilized mechanism for assessing organizational health in relation to goals and societal context, that includes various people from varied cultures within that subset of society (Miller, 2017). The second step is to have ongo- ing discussions and planning around the goals of the community of practice. What are the values of your community? Do your program evalua- tions incorporate indicators of these values in action, in outcomes (Binder, 2016)? How are they changing over time? What are you learning? How does it relate to the research? And most importantly, are the children making better prog- ress? Are the families more involved? How did they participate in the process? Is there more variation in the way programs are designed that reflects cultural values and happy progress? Do the people you work with feel that you care about their identities and values? Do they feel the out- comes reflect that care? the lifes- 9.2.3 Expansive Care Schwartz & we are each other’s harvest: we are each other’s business: we are each other’s magnitude and bond. (Brooks, 1970) We offer a portion of Pulitzer Prize poet Gwendolyn Brooks’ work as the introduction to care for several reasons. One of the ways to understand people is through talking to them, hearing their poetry and music, seeing their art, listening to their stories, understanding how they spend their days and prioritize their activities, finding out what values they hold dear and what teachings guide them and their perspectives on life and the afterlife, and asking what gives their lives meaning and substance. In fact, as authors, we share this is as part of our poetry, as part of what informs our perspectives. By virtue of our differing and uniquely combined positionalities S. Alai-Rosales et al. Kramer, 2019; Blell et al., 2010; LeBlanc et al., 2020; LeBlanc et al., 2021; McLaughlin & Carr, 2005; Rohrer et al., 2021; Tarbox & Rodriguez, 2021; Taylor et al., 2019; Walser & O’Connell, 2021). For example, both Rohrer et al. (2021) and Taylor et al. (2019) discuss approaches that may be likely to establish and enhance therapeutic relationships, including improving these skills to understand the different ways of expressing care and understanding meaning across cultures (e.g., Hurn & Tomlin, 2013; Zoch et al., 2018) and learning to change behaviors to adapt, to “sway,” in our interactions across cultures (Lynch & Hanson, 2011). 9.2.3.2 Procedures and Outcomes: Show You Care Here, the emphasis is on developing methods to systematically include participants and cultural context (e.g., Fawcett, 1991; Fong et al., 2016; Fong et al., 2017; Fong & Tanaka, 2013; Morris & Hollins, 2021; Pritchett et al., 2021; Schwartz & Kelly, 2021). As practitioners, our role is to understand these dimensions and to facilitate the family’s voice in the design of interventions. This involves sharing and creating perspective and to do so for people of different cultural groups in equitable ways. That is to say, we should care- fully consider the evidence base and to what degree it shows evidence of increased quality of life and of including people of diverse cultures in the research. It also means learning about the family’s life and values across many important dimensions in which we humans can vary (Lynch & Hanson, 2011). This includes, but is not lim- ited to, the privileges and oppressions we experi- ence; the degrees of affluence and poverty in our life circumstances; who we rely on, trust, and turn to for help and support; how, what, and when we communicate; how we interact and respond to time; how we respond to hierarchies of power; refugee and/or immigration conditions; family constellations; gender identification; languages spoken; religious and spiritual practices; and trauma related to cultural identity. Time should be dedicated and methods employed to under- stand the participants’ cultural perspective and values along these dimensions and for the inter- ventionist to consider how this contrasts with the Responsive Evidence-Based Practice 163 the injustices in our own communities; welcom- ing and creating spaces for diverse voices within our organizational structures; developing com- munities of practice and strategic organizational plans specifically addressing values, goals, and outcomes related to equity and justice; and encouraging solidarity, because of and in spite of our differences, for the wellbeing of all. The sug- gested efforts can be studied and considered as we act and learn as individuals, as a discipline, and as our world evolves. 9.3 Conclusion and Onward As the world undergoes social transformation, we can better our interventions for all children with autism in the context of their cultures, we can create and nurture genuine and caring com- munities of practice, we can center voices and expressed dreams and life outcomes of the people we serve, and we can learn in those communities with humility. The children and families we serve depend on it. We are doing hard work; there is a large evidence base we should learn and many skills we should master. And still, it is not enough. We have to place what we are doing in the larger context of culture and the human condition. We recognize that, on the one hand, we now know more than ever and can facilitate powerful changes and, on the other hand, they are not always the right changes, nor are they always accessible. 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