At least two paragraphs summarizing the entirety of the readings.? For example, what is the main idea of the readings, when there are multiple chapters or articles, what

Behavior Analysis in Practice (2019) 12:654–666 https://doi.org/10.1007/s40617-018-00289-3

DISCUSSION AND REVIEW PAPER

Compassionate Care in Behavior Analytic Treatment: Can Outcomes be Enhanced by Attending to Relationships with Caregivers?

Bridget A. Taylor1 & Linda A. LeBlanc2 & Melissa R. Nosik3

Published online: 20 September 2018 # Association for Behavior Analysis International 2018

Abstract The practice of behavior analysis has become a booming industry with growth to over 30,000 Board Certified Behavior Analysts (BCBAs) who primarily work with children with autism and their families. Most of these BCBAs are relatively novice and have likely been trained in graduate programs that focus primarily on conceptual and technical skills. Successfully working with families of children with autism, however, requires critical interpersonal skills, as well as technical skills. As practitioners strive to respond efficiently and compassionately to distressed families of children with autism, technical skills must be balanced with fluency in relationship-building skills that strengthen the commitment to treatment. The current article provides an outline of important therapeutic relationship skills that should inform the repertoire of any practicing behavior analyst, strategies to cultivate and enhance those skills, and discussion of the potential effects of relationship variables on treatment outcomes.

Keywords Autism . Collaboration . Compassion . Empathy . Family . Parents . Perspective taking . Therapeutic relationship

Behavior analysis and autism treatment have grown signifi- will most likely lead to a family choosing behavior-analytic cantly over the last 10 years. There are now 299 institutions services for their children and remaining engaged in behavior- offering verified course sequences in behavior analysis and analytic treatment over time (Croen, Shankute, Davignon, over 30,000 certified behavior analysts practicing worldwide Massolo, & Yoshida, 2017). In other health care industries (Behavior Analyst Certification Board [BACB], n.d.; Carr & (e.g., medicine and mental health services), therapeutic rela- Nosik, 2016). Additionally, state-initiated insurance mandates tionship skills such as empathy and compassion are highly have allowed an increasing number of families to access valued and have been found to be correlated with patient sat- behavior-analytic interventions (Autism Speaks, 2017). As isfaction, adherence to treatment, enhanced quality of infor- our field continues to grow, we must identify the variables that mation gathered from patients, and improved clinical out-

comes (Derksen, Bensing, & Lagro-Janssen, 2013; Hojat et al., 2011; Kelley, Kraft-Todd, Schapira, Kossowsky, & Riess,

The opinions expressed in this article are not an official position of the 2014; Kirby, Tellegen, & Steindl, 2017; Riess, 2017; Weiss et Behavior Analyst Certification Board. The training materials for

“Establishing and Maintaining Therapeutic Relationships With al., 2017). This research is primarily correlational, with heavy Families” were developed as part of the clinical standards initiative at reliance on self-report and rating scales; however, findings Trumpet Behavioral Health, with the assistance of Catherine from other health care fields indicate that a positive clinical Miltenberger and Kristen Cooper. The training information on

relationship can positively impact a number of outcome vari-“Communicating With Parents: Active and Empathic Listening” was developed as part of Alpine Learning Group’s core competency training ables. For example, Hojat et al. (2011) found that patients program. whose physicians were rated high on the Jefferson Scale of

Empathy were more likely to have better clinical outcomes * Bridget A. Taylor related to their management of diabetes. Although behavior

[email protected] analysts’ empirically derived technical skills will remain es- sential to ensure client outcomes, those methods do not exist

1 Alpine Learning Group, 777 Paramus Road, Paramus, NJ 07652, separately from relationships with clients and their caregivers. USA Behavior analysts’ overall competencies may be enhanced by

2 LeBlanc Behavioral Consulting, Golden, CO, USA direct training in interpersonal skills and strategies for build- 3 Behavior Analyst Certification Board, Littleton, CO, USA ing relationships with families. Enhanced relationship skills

655 Behav Analysis Practice (2019) 12:654–666

may lead, in turn, to more effective partnerships with care- givers, increased and sustained engagement in treatment and adherence, and improved clinical outcomes.

More than 20 years of supervising and training new behavior analysts has convinced the authors that practic- ing behavior analysts do not always establish or sustain collaborative and caring relationships with caregivers. Anecdotally, the authors have observed that family dis- satisfaction with the behavior analyst often stems from deficient relationship skills (e.g., the behavior analyst seeming hurried or unavailable or not listening to paren- tal concerns). In fact, behavior analysts are more likely to have an ethics complaint filed against them by a par- ent or consumer than by colleagues or supervisors (BACB, 2018). The majority of these ethics complaints are less about what the behavior analyst did and more about how he or she did it. As Tulgan (2015) noted, someone is more likely to be hired for his or her techni- cal skills and fired for problems in the skills that directly involve relating to others. A behavior analyst’s failure to practice essential relationship skills may have deleterious effects on treatment, including clients’ failure to support and implement programming, requests for reassignment or replacement of treatment team personnel, or withdraw- al from behavior-analytic treatment altogether. In the ag- gregate, negative impacts on individual treatment have collateral consequences for providers, agencies, and the field at large.

Consider, for example, a behavior analyst training a parent to implement a bedtime extinction protocol that requires the parent to ignore their child’s cries and to spend most of the night redirecting the child to bed. The parent’s acceptance of, and adherence to, treatment is likely to be influenced by sev- eral variables (Allen & Warzak, 2000; Baker & LeBlanc, 2011; Vazquez, Fryling, & Hernández, 2018). Although the proven clinical efficacy of the procedure might initially con- vince the family of the intervention’s value, follow-through may be enhanced by a compassionate approach to identifying and implementing the intervention. By engaging the parent in conversation and actively listening to the parent’s concerns, the behavior analyst may proactively identify potential bar- riers to adherence (e.g., concern about other children’s sleep being disrupted, being fatigued at work the next day, or not being able to tolerate crying). This proactive engagement may enable a response that is both warm and respectful, conveying an understanding and appreciation of the parent’s concerns. From this point of relational connection, the parent and pro- vider can proceed collaboratively to develop a plan that will maximize treatment integrity and the intervention’s outcomes. Successful implementation of the intervention may, in turn, bolster the confidence of the parent, as well as the behavior analyst, and increase the caregiver’s overall trust and invest- ment in ongoing treatment.

Compassionate Care: Definitions and Responses

Mental health (e.g., psychology, social work) and general health practices (e.g., medicine, nursing, palliative care) have identified certain clinical relationship variables that fall under the rubrics of empathy and compassion. Constructs of sympa- thy, empathy, and compassion are routinely confused or con- flated. Although there are various definitions outlined in the non-behavior-analytic literature (e.g., Strauss et al., 2016), these three constructs are believed to comprise distinct re- sponses and to have differential effects on consumers of health care (Goetz & Simon-Thomas, 2017; Sinclair et al., 2016). Sympathy involves feeling sorry for another person’s pain and sorrow but does not necessarily imply a shared experience of the other’s pain. Some studies have identified that patients experience sympathy negatively and associate sympathy with pity (Sinclair, Beamer, et al., 2016). Empathy, on the other hand, is “walking in another’s shoes” and requires perspective taking: one must perceive the experience from the other’s perspective and have an understanding of the person’s emo- tional response within that experience. Empathy involves both a cognitive component (identifying the emotion being displayed by the person) and an affective component (appre- ciating and experiencing the person’s emotional response). One must be aware of and understand the other person’s situ- ation, perspective, and feelings; communicate that under- standing; and check for accuracy (Goetz & Simon-Thomas, 2017). For example, if a parent expresses sadness about hav- ing a child with autism, a clinician would empathize with the parent by recognizing the parent’s pain and sadness by taking the parent’s perspective, acknowledging and confirming the feelings expressed by the parent, and genuinely appreciating and experiencing the parent’s pain. Importantly, the empathic response does not presume or require that the parties involved have actually participated in the same experience. Instead, the clinician must take the perspective of the parent and draw upon his or her own unique experiences of loss and distress to inform his or her understanding of the parent’s experience. Put differently, empathy is the act of being in touch with an- other’s personal experience by relating it to one’s own.

Compassion takes empathy a step further, by bringing ac- tion to the empathic response. In this regard, compassion con- verts empathy into an act aimed at the alleviation of suffering. Lown et al. (2014) described compassion as “the recognition, empathic understanding of and emotional resonance with the concerns, pain, distress or suffering of others coupled with motivation and relational action to ameliorate these condi- tions” (p. 3). For example, a clinician may empathize with a parent, who is sad and frustrated that her son is not making the progress she had hoped, by listening attentively to the parent, taking the parent’s perspective, acknowledging and accepting the parent’s feelings, and allowing herself to feel what the

656 Behav Analysis Practice (2019) 12:654–666

parent is feeling in the moment. Compassionate care by the clinician would aim to reduce the parent’s sadness and frus- tration over time, perhaps by assisting the parent in reorienting the goals for her child, helping her be more compassionate with herself as a parent (Gould, Tarbox, & Coyne, 2017), or by helping the parent to acknowledge and appreciate incre- mental gains. A clinician rushing to fix the problem, on the other hand, may undermine or invalidate the parent’s expres- sion of sadness and frustration, potentially jeopardizing in- vestment in treatment. By applying techniques of compassion- ate care, a behavior analyst can identify and tact when others are suffering through the process of perspective taking, tact their own personal experiences and how the observed suffer- ing may relate to his or her own, and then act intentionally to alleviate the suffering of the caregiver.

There are few behavior-analytic definitions of compassion and empathy. Perspective taking, however, which is necessary for empathic and compassionate responding, is rooted in rela- tional frame theory (RFT; Barnes-Holmes, Foody, Barnes- Holmes, & McHugh, 2013; Vilardaga, 2009) and clinically demonstrated in acceptance and commitment therapy (ACT; Hayes, Strosahl, & Wilson, 2012; Tirsh, Schoendorff, & Silberstein, 2014). According to RFT, perspective taking is possible through a series of interpersonal relations of three deictic frames: I-you, here-there, and now-then (see Barnes- Holmes et al., 2013). These relations allow one’s perspective relative to another’s. For example, a behavior analyst interacting with a parent who is crying as she is describing the recent diagnosis of her child must be able to respond to cues for discrimination of the likely private event of the par- ent, as well as the parent’s emotional experience (i.e., sadness, despair). This occurs through a series of trained, coordinated relations (e.g., “If I were you, I would be experiencing. ..” ). The clinician, having experienced loss in her own past, has learned to act in accordance with what the parent is experiencing as distinct from her own experience but relat- ed. For example, the clinician may engage in covert verbal behavior, such as “If I were you, I would be experiencing sadness,” because this experience is similar to one that this clinician has had in the past. Thus, according to proponents of RFT, compassionate care of the clinician, to alleviate suf- fering of the parent, requires a repertoire of deictic framing (Tirsh et al., 2014).

A Survey of Caregivers

Having observed the impact of relational competency anec- dotally, we conducted a survey of parents of children with autism regarding their impressions of behavior analysts’ rela- tionship skills. The survey was created using Survey Monkey and was distributed through e-mail lists, Facebook, and select- ed autism advocacy organizations. These distribution targets

were identified by doing a Google search of potential parent- directed autism e-mail lists to post the survey. In addition, the parents who encountered the link to the survey could distrib- ute it to other parents. No behavior analysts were used to distribute the survey to minimize potential bias in distribution (e.g., distribution to families expected to rate their behavior analysts highly) or perception of social pressure for positive ratings. Ninety-five completed surveys were received and an- alyzed. Due to the public nature of the distribution targets and the potential for participant distribution, it is unclear how many individuals saw the link and it is not possible to calcu- late a return rate. However, 95 is clearly only a very small percentage of all parents with children with autism that receive or have received applied behavior analysis services. Survey items sampled parent perception of relationship variables (e.g., “The behavior analyst compromises with me when we do not agree.”). The items were scored on a 1 (strongly disagree) to 5 (strongly agree) scale, and the scores were reversed for negatively worded items so that higher scores always reflected better parental impression. The full content of the survey can be obtained from the first author.

Tables 1, 2, and 3 present the results of the survey with questions grouped into the three areas: listening and collabo- ration, empathy and compassion, and “negative” behaviors of the behavior analysts that could contribute to problems in the therapeutic relationship. The mean and standard deviation are presented for each item with questions ordered from lowest to highest mean. In addition, the far-right column presents the percentage of respondents who indicated agreement with the question at some level of intensity (i.e., agree, strongly agree). This percentage agreement index is often used as a supple- mental analysis for 5-point scale satisfaction surveys because of the pervasiveness of positive response bias on satisfaction surveys. That is, most people respond positively if possible, and neutral responses (i.e., score of 3) indicate that the respon- dent could not agree with the statement at any level. Thus, average scores below 4 are generally considered problematic because, on average, respondents were unwilling to agree with the statement. Items with identical mean scores could have differing percentage agreement scores due to the individual responses collapsed into the mean (see Table 1’s first two items and eighth and tenth items as examples). Items with mean scores below 4 or percentage agreement scores below 75% could be interpreted as behaviors worth targeting for improvement (Sauro, 2011).

Table 1 provides the scores for questions about behaviors related to listening and collaboration. Of the 15 items, 8 of them, or approximately half, have mean scores of 4 or higher and percentage agreement scores above 75%. Respondents indicated that behavior analysts rate high on listening to con- cerns in the first meeting (mean = 4.58; 93.7% agree) and protecting confidentiality (mean = 4.55; 90.5% agree). However, compromising during a disagreement (mean =

657 Behav Analysis Practice (2019) 12:654–666

Table 1 Items that represent listening and collaboration in the therapeutic relationship

Question Mean (SD) Percentage Agree

The behavior analyst regularly asks me if I am happy with how things are going with my child. 3.69 (1.20) 61.1

The behavior analyst compromises with me when we do not agree. 3.71 (1.06) 58.9

The behavior analyst clarifies roles and expectations, both mine and his or hers. 3.83 (1.20) 65.3

The behavior analyst regularly communicates and follows up with me about recent changes to programs. 3.84 (1.21) 68.4

The behavior analyst regularly modifies procedures and skill targets based on my concerns. 3.89 (1.15) 68.4

The behavior analyst collaborates and communicates with other members of my child’s treatment team (e.g., school, 3.95 (1.18) 71.6 other therapies).

The behavior analyst is effective at identifying skills and reducing behavior that meet my family’s needs. 3.96 (1.23) 71.6

The behavior analyst explains the rationale for his or her treatment decisions and procedures. 4.07 (1.04) 80.0

When I have concerns about my child’s program, the behavior analyst actively listens to my concerns without being 4.08 (1.16) 76.8 defensive.

The behavior analyst makes me feel like a valued member of my child’s treatment team. 4.09 (1.20) 75.8

The behavior analyst considers my concerns and collaborates with me when developing problem-behavior 4.16 (1.01) 78.9 intervention plans.

The behavior analyst considers the input of my child when appropriate. 4.19 (.94) 77.9

The behavior analyst considers my concerns and collaborates with me when developing programs for learning new 4.19 (1.05) 80.0 skills.

The behavior analyst protects confidentiality. 4.55 (.79) 90.5

When first meeting me and my child, the behavior analyst listened to my concerns about my child. 4.58 (.73) 93.7

Average 4.05 (1.08) 74.6

Likert scoring for each item represented 5 (strongly agree) to 1 (strongly disagree)

Table 2 Items that convey empathy and compassion in the therapeutic relationship

Question Mean (SD) Percentage Agree

The behavior analyst regularly asks how I am doing. 3.46 (1.25) 53.68

The behavior analyst acknowledges his or her own mistakes. 3.54 (1.37) 55.79

The behavior analyst cares about including all of my children. 3.62 (1.22) 51.06

The behavior analyst reassures me that things will get better. 3.78 (1.12) 65.26

The behavior analyst acknowledges when treatment is not working. 3.81 (1.17) 65.26

The behavior analyst seems to have an understanding of what it is like for me to have a child with autism. 3.85 (1.31) 68.42

The behavior analyst understands when I have challenges implementing protocols. 3.86 (1.12) 69.47

The behavior analyst seems to understand my fears and anxiety about my child’s future. 3.87 (1.05) 69.47

The behavior analyst is patient with me when training me to implement protocols. 3.88 (1.14) 68.42

The behavior analyst understands what I struggle with in parenting my child. 3.91 (1.19) 72.63

The behavior analyst understands how having a child with autism impacts our family dynamics. 3.91 (1.19) 72.63

The behavior analyst acknowledges my feelings when discussing difficult or challenging circumstances. 3.92 (1.12) 72.63

The behavior analyst respects my cultural values and beliefs. 3.95 (1.01) 67.02

The behavior analyst is compassionate and nonjudgmental. 3.97 (1.19) 72.63

The behavior analyst cares about my capacity to parent my child. 3.97 (1.08) 70.53

The behavior analyst is optimistic about my child’s capability and potential progress. 4.23 (.97) 87.37

The behavior analyst is friendly, genuine, and warm. 4.31 (.98) 84.21

The behavior analyst cares about my child. 4.35 (.88) 84.21

The behavior analyst cares about the progress of my child. 4.40 (.90) 88.42

The behavior analyst acknowledges and expresses appreciation of my child’s strengths. 4.44 (.78) 90.53

The behavior analyst acknowledges and celebrates my child’s accomplishments. 4.48 (.77) 89.47

Average 3.98 (1.08) 72.34

Likert scoring for each item represented 5 (strongly agree) to 1 (strongly disagree)

658 Behav Analysis Practice (2019) 12:654–666

Table 3 Items that may contribute to problems in the therapeutic relationship

Question Mean (SD) Percentage Agree

The behavior analyst seems to have his or her own agenda about the direction of my child’s program. 3.64 (1.35) 24.2

The behavior analyst underestimates my child’s ability. 3.80 (1.29) 21.1

The behavior analyst focuses too much on my child’s challenging behavior. 3.80 (1.17) 16.1

The behavior analyst failed to communicate with me. 3.81(1.28) 18.9

The behavior analyst focuses too much on my child’s deficits. 3.86 (1.12) 14.7

The behavior analyst has an authoritarian demeanor rather than a collaborative one when discussing decisions about 3.93 (1.34) 21.1 my child’s program.

The behavior analyst is too busy to discuss things about my child’s program that are important to me. 3.94 (1.18) 15.8

The behavior analyst often seems distracted during meetings. 4.00 (1.11) 10.5

The behavior analyst let his or her opinions of other professions or other treatments interfere with our relationship. 4.00 (1.21) 16.0

The behavior analyst interrupts me during meetings about my child. 4.18 (1.01) 8.4

The behavior analyst uses too much technical language that I don’t understand. 4.21 (.95) 7.4

Average 3.92 (1.18) 15.8

Likert scoring was reversed for each of the negatively worded items and represented 1 (strongly agree) to 5 (strongly disagree)

3.71; 58.9%), inquiring about satisfaction (mean = 3.69; 61.1 % agreement), and role clarification (mean = 3.83; 65.3% agree) represent areas with need for improvement, as the items’ average scores are below 4 (i.e., on average, respon- dents did not agree with these statements).

Table 2 provides the scores for items that convey empathy and compassion. Of the 21 items, only 6 have a mean score of 4 or above and an agreement score of greater than 75%. Respondents indicated that behavior analysts rate high on car- ing about, celebrating, and appreciating the child’s progress and strengths (all items with means above 4.2 and over 84% agreement). However, the majority of the items represent areas for improvement, with the lowest scores related to dem- onstrating caring about the entire family, acknowledging mis- takes or treatment failures, and being patient and reassuring.

Table 3 provides the scores for items that reflect behavior that could harm a therapeutic relationship. Only 4 of the 11 items had a mean score above 4 (i.e., technical language/jar- gon, interrupting, interfering opinions about other disciplines, and distraction during meetings). The majority of items had a mean score below 4 (i.e., on average, respondents did not agree with the statement). None of the items had 25% or greater agreement (i.e., the reciprocal of the 75% desired level on positive items), indicating that most respondents scored these items as a 3 (neutral). Behavior analysts having their own agenda about programming (24.2 % agreement), having an authoritarian demeanor when discussing programming (21.1% agreement), and underestimating the child’s ability (21.1% agreement) had the highest percentage agreement scores and represent the biggest areas of concern.

As the tables illustrate, behavior analysts are currently performing relatively well on some skills in each of the three sampled areas. This is encouraging news. On the other hand, the survey revealed a number of areas where behavior analysts

can, and arguably should, improve. Although these results must be interpreted cautiously given the small sample sizes, there is evidence that at least some behavior analysts may have deficits in a number of core relationship skills. Given these possible deficits, and the growing research in other health care industries indicating the potential importance of therapeutic relationship skills (Kelley et al., 2014), we propose that train- ing programs for behavior analysts consider teaching skills in these areas. Practitioners may benefit professionally from such competencies, and service outcomes may be improved by compassionate care’s collateral impacts. Moreover, targeted training in relationship skills is consistent with the BACB’s ethics code and training requirements.

Behavior Analyst Ethics Code and Training Requirements

The Professional and Ethical Compliance Code for Behavior Analysts (the Code; BACB, 2016) and the BACB Task List (Task List; BACB, 2014) identify the importance of the col- laborative relationship with the family and client. The Task List includes items related to collaboration with other profes- sionals (H-9) and recommendations of intervention goals and strategies based on factors such as client preferences, supporting environments, risks, constraints, and social validi- ty (H-4). A behavior analyst adept at active listening, demon- strating empathic concern, and compromising will be more likely to identify caregiver preferences and overcome poten- tial constraints to treatment.

The Code speaks both directly and indirectly to the impor- tance of the relationship of the behavior analyst and care- givers. For example, sections 1.05 and 3.04 speak to the im- portance of clear and effective communication by pointing out

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that behavior analysis should “use language that is fully un- derstandable to the recipient of those services” (p. 5) and “ex- plain assessment results using language and graphic displays of data that are reasonably understandable to the client” (p. 11). Sections 2.0 and 4.0 also speak to the importance of collaboration with the client, family, and other important peo- ple in the environment when planning and implementing treat- ment. These items specify that the clients should be involved in treatment planning and that the behavior-change program must take into account environmental variables (e.g., family context, preference for treatment), suggesting that a collabo- rative, rather than expert, model is preferable. Section 4.05 directly refers to the importance of the ongoing collaborative process “throughout the duration of the client-practitioner re- lationship” (p. 12).

Barriers to Relationship Skills and Compassionate Care

Despite ethical directives related to relationship skills, several factors may contribute to difficulty in building and sustaining effective therapeutic relationships with parents. First, academ- ic training programs in behavior analysis may simply neglect to incorporate training in these skills. For example, Pastrana et al. (2016) identified the most frequently assigned readings of behavior analysis graduate training programs. Of those foun- dational readings, none directly addressed relationship skills between behavior analysts and clients or caregivers. Additionally, the highly technical training and shaping of ver- bal precision in graduate programs may lead to overuse of technical jargon that can be off-putting or abrasive (Critchfield et al., 2017) and may lead behavior analysts to be perceived as authoritarian or “expert” rather than collabo- rative and flexible.

Second,

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