Evolution of a research team: the patient partner perspective.

INTRODUCTION: Despite a movement toward the inclusion of patient partners or advisors as part of the research team in all funded studies, few publications have discussed patient engagement from the patient partners' perspective. METHODS: Qualitative interviews were conducted by independent qualitative researchers to collect and summarize the experiences and perspectives of the 16 Patient Partners (PPs) on the study team for PeRson EmPowered Asthma RElief (PREPARE), a large, pragmatic study of 1200 African American/Black (AA/B) and Hispanic/Latinx (H/L) adults with asthma. This study was funded by the Patient-Centered Outcomes Research Institute. RESULTS: This paper, authored by the PPs themselves, summarizes qualitative interview findings. The journey of the PREPARE PPs began with a desire to learn more about asthma and advocate for other individuals with asthma. Many challenges, including intimidation and lack of trust, were overcome as the research team prioritized building a comfortable environment in which PPs' lived experiences, opinions, and cultural beliefs are valued, and in which PP voices are centered and respected. Over time, the PPs gained confidence in expressing ideas and feedback, and in taking ownership of their role as valued members of the research team. The PP experience has had tremendous personal and professional impact on the PPs themselves, while also modeling a change in the way researchers and PPs relate to and partner with each other. CONCLUSION: The partnership between PPs and researchers in the PREPARE study has elevated the PP role from external advisors to integral and empowered members of a collective research team, and the partnership developed and evolved over time.

Patients and caregivers who have lived with a condition have an important and unique perspective researchers should consider. To this end, patients and caregivers have expanded their involvement in the design and conduct of clinical research, joining research teams and being engaged in the research process from start to finish. Researchers have reported on the positive impact that these "patient partners" or "patient advisors" have on research. But few papers report on the impact on the patient partners/advisors from being on a research team.Here we report the lived experiences of the 16 Patient Partners who served on the research team for a large study of 1200 African American/Black (AA/B) and Hispanic/Latinx (H/L) adults with asthma. These Patient Partners offered their input over 7 years, spanning from study design, study conduct, understanding results, to sharing results.To understand the Patient Partners' experiences, we conducted interviews asking about their journey on the research team. Motivations and reasons they became Patient Partners Initial experiences with the research team If and how over time, they became comfortable and developed confidence If and how the research team made them feel valued and respected The personal and professional impact of being a Patient Partner Their advice to researchers and fellow patients considering including or joining as Patient Partners or advisors By reporting the perspectives of these 16 Patient Partners, we hope to support continued movement toward broader and better inclusion of patients and caregivers on research teams.

The Best and Worst Things Staff Report About Behavioral Training Workshops: a Large-Scale Evaluation.

A variable affecting the success of staff training programs conducted by behavior analysts is trainee acceptance of the training. This study constituted a large-scale evaluation of staff acceptance of behavioral training workshops. Over a 10-year period, 646 human service staff who participated in 132 workshops were questioned regarding the best and worst thing about the workshops. The most common staff comments concerning the best thing pertained to the training content, followed closely by trainer style and then trainee activities. There were far fewer comments regarding the worst thing, with most involving aspects of the physical environment in which training occurred. Implications of the results for practitioners are offered in terms of conducting workshop training in accordance with trainees' reported preferences. Emphasis is placed on ensuring training content is specific in nature as well as new and relevant for the trainees' work situation, providing frequent demonstrations and examples, and structuring repeated opportunities for active trainee responding.

No Less Worthy: Recommendations for Behavior Analysts Treating Adults with Intellectual and Developmental Disabilities with Dignity.

In this article, the authors offer recommendations for behavior analysts on how to treat adults with intellectual and developmental disabilities (IDD) with dignity. Initially, the importance of treating adults with disabilities with dignity is emphasized in terms of the impact on people with IDD, their family members, behavior analysts and other service providers, and the behavior analysis field in general. The recommendations are based primarily on the authors' professional and personal experiences along with similar experiences of others involved either personally or professionally in the disability field. The focus is on ways in which behavior analysts speak and behave that reflect dignity versus the lack thereof as perceived by others and, where relevant, consensus opinion within the professional field of IDD. Ways for behavior analysts to acquire and maintain awareness of manners of speaking and behaving that reflect dignity within the local settings in which they work are also provided.

Maintaining Staff Performance Following a Training Intervention: Suggestions from a 30-Year Case Example.

A frequent challenge encountered by behavior analysts in human service agencies is maintaining effects of their training interventions with agency staff. A case example is provided to illustrate how effects of a staff training intervention initiated by a behavior analyst maintained for an extended period in a center-based program for adolescents and adults with severe disabilities. The process involved the behavior analyst working closely with the program supervisor and a professional staff member in a collaborative team approach to increase involvement of center participants in functional (vs. nonfunctional) educational tasks. Initially, the team jointly developed an intervention to increase staffs' provision of functional tasks. The behavior analyst subsequently worked with the team members regarding how to implement the intervention by training their staff and providing feedback. The two team members then continued providing feedback during their respective supervisor tenures without continued presence of the behavior analyst. Results indicated that initial increases in participant involvement in functional tasks maintained during follow-up observations encompassing 30 years. Normative comparisons also showed that the levels were well above the level of functional task involvement in other center-based programs across that time period. Results are discussed regarding recommendations for behavior analysts to use a collaborative team approach with supervisors indigenous to an agency to help maintain staff behavior targeted for change by the behavior analysts.

Familiarizing New Staff for Working with Adults with Severe Disabilities: a Case for Relationship Building.

In human service agencies, situations exist at various times in which consumers are not familiar with the staff who work with them. We evaluated effects of familiar versus unfamiliar staff working with two men with severe disabilities in a vocational program. Results indicated both participants displayed more compliance with familiar staff relative to unfamiliar staff and one exhibited more on-task (one was near ceiling levels with both staff). Subsequently, a familiarization process was conducted with four new staff before working with four men with severe disabilities that involved spending time with a participant in a preferred activity and phasing in to the participant's routine. Each staff worked with one participant after being familiarized and concurrently with another without being familiarized. In all but one case, participant compliance was greater with the familiarized staff. Except when on-task was near ceiling levels, it also was higher with the familiarized staff. Additionally, results offered some support for the existence of a good relationship between familiarized staff and participants in terms of more participant happiness indices than with unfamiliar staff and, to a smaller degree, less unhappiness indices and problem behavior. Implications for practitioners are discussed, including being aware of potential problems when unfamiliar staff work with adults with severe disabilities and considering familiarizing new staff prior to working with individuals. Discussion also addresses how more attention could be directed to relationship development from a practitioner and research perspective.

The aging anesthesiologist: a narrative review and suggested strategies.

PURPOSE: To address an aging anesthesia workforce, we review the relevant changes and implications associated with age in order to stimulate discussion at the individual, local, and national levels regarding appropriate changes in practice aimed at protecting patient safety. PRINCIPAL FINDINGS: In a 2013 survey of Canadian Anesthesiologists, 22% were aged 55-64 yr, 7% were aged 65-74 yr, and 3% were older than 74 yr. Clinical abilities decline with age, making older anesthesiologists more likely than their younger colleagues to be associated with adverse patient events. Anesthesiologists older than 65 yr in Ontario, Quebec, and British Columbia had 50% more cases involving litigation and almost twice the number of cases involving severe patient injury compared with anesthesiologists younger than 51 yr of age. In the absence of overt deterioration in skills, decisions about reducing activities and retirement are left largely to individuals despite their limited ability to self-assess competence. This state of affairs may contribute to the increased incidence of adverse events and poor patient outcomes. CONCLUSIONS: Provincial regulatory bodies have peer assessment programs to evaluate physicians at random, following a complaint, and at certain ages, but all have limitations. Simulation has been used widely for training and assessment in the aviation industry as well as in automobile driving exams. Simulation can assess crisis recognition and management, which is crucial in anesthesiology and not well assessed by other methods, and could assist elderly anesthesiologists during the pre-retirement phase of their careers. A standardized schedule for winding down would have advantages for physicians, their department, and their patients. A suggested schedule might include no further on-call duties for those aged 60 yr and older, no further high-acuity cases for those aged 65 yr and older, and retirement from operating room (OR) clinical practice (with possible continuation of non-OR clinical or other non-clinical activities, if desired) at age 70 yr. These timelines could be extended with satisfactory performance in annual simulation sessions involving assessment and practice in crisis management.

Fatal attack by a juvenile tiger shark, Galeocerdo cuvier, on a kitesurfer in New Caledonia (South Pacific).

We present a case of a non-provoked fatal shark attack on a 15-year old male kitesurfer in New Caledonia. The victim lost his board and was pulled by the sail along the water surface in a reef passage when a shark attacked. The shark inflicted at least two bites on the left leg, including a severe one around the knee, resulting in a quick hypovolemic shock that was fatal. The analysis of one of these bites indicated that a 2.8 m TL (est. length) tiger shark was responsible for this attack. The features of the attack are consistent with those of a predator response to a surface feeding stimulus.

Features and motivation of a fatal attack by a juvenile white shark, Carcharodon carcharias, on a young male surfer in New Caledonia (South Pacific).

We present the case of a non provoked fatal shark attack on a 19-year old male surfer in New Caledonia. Several severe bites removed the right arm and all flesh from the right thigh, provoking a quick hypovolemic shock that was fatal. The information provided by a witness and the analysis of a partial bite on the right calf allowed us to identify a 2.7 m TL (est. length) white shark as responsible for this attack. The features of the attack are consistent with a young predator motivated by hunger and the development of its predatory skills.

Teaching Practitioners to Conduct Behavioral Skills Training: A Pyramidal Approach for Training Multiple Human Service Staff.

A job responsibility of many behavior analysts that can involve significant amounts of time is training human service staff in behavior-change and related procedures. We evaluated a pyramidal approach using behavioral skills training (BST) for a trainer to train multiple staff. The BST skills of 10 practitioners in a human service setting were assessed as they trained a staff person in simulation before and after being trained (with BST) to conduct BST. Results indicated all participants improved their use of BST during the assessments following training and demonstrated proficient application of BST while training a staff person in the regular work setting. Acceptability measures suggested the training process was well received by the participants. Results are discussed regarding practical considerations with BST-based pyramidal training, including the conditions in which this training approach may be most advantageous.

Identifying indices of happiness and unhappiness among adults with autism: potential targets for behavioral assessment and intervention.

Research is increasingly demonstrating the importance of monitoring indices of happiness as part of behavioral programs for individuals who have severe intellectual disabilities. We evaluated a practitioner-oriented process for identifying and validating individualized indices of this private event among three adults with autism who were nonvocal or minimally vocal. Caregiver surveys were administered to obtain agreement regarding behavior displayed when the individuals were happy and unhappy, as well as situations in which they were likely to experience happiness and unhappiness. Observations corroborated caregiver opinion in that participants displayed more happiness indices in situations reported to be accompanied by happiness, and for the most part, more unhappiness indices in reported unhappiness situations. Subsequent choices by each participant supported the validity of the individualized indices. Results are discussed regarding how identifying happiness indices can be a useful component of behavioral applications, as well as guidelines and cautions regarding use of the indices in routine practice.

Evidence-based staff training: a guide for practitioners.

Behavior analysts in human service agencies are commonly expected to train support staff as one of their job duties. Traditional staff training is usually didactic in nature and generally has not proven particularly effective. We describe an alternative, evidence-based approach for training performance skills to human service staff. The description includes a specific means of conducting a behavioral skills training session with a group of staff followed by on-the-job training requirements. A brief case demonstration then illustrates application of the training approach and its apparent effectiveness for training staff in two distinct skill sets: use of most-to-least prompting within teaching procedures and use of manual signs. Practical issues associated with applying evidence-based behavioral training are presented with a focus on providing training that is effective, efficient, and acceptable to staff trainees.

Reading groups: a practical means of enhancing professional knowledge among human service practitioners.

Quality human service provision is heavily dependent on practitioners maintaining up-to-date professional knowledge. We evaluated a monthly reading group process as a practical means of enhancing professional knowledge among educators in a program for adults with severe disabilities. The reading group process was designed to minimize disruptions to participants' direct contact time with students and to promote participant acceptance of the process. The process followed a structured format involving study questions and systematic prompting to ensure active participation. Comparison of pre- and post-quiz responses to short-answer and multiple-choice questions showed consistent improvement in correct answers following each of four reading group meetings. Survey responses indicated all participants reported the process to be highly acceptable. Results are discussed regarding guidelines for behavior analysts interested in enhancing professional knowledge of other practitioners with whom they work, with a focus on obtaining administrative approval for reading group activities, structuring the activities to promote active participation, and using strategies to enhance participant acceptance.

Intravenous lidocaine does not reduce length of hospital stay following abdominal hysterectomy.

PURPOSE: Intravenous lidocaine given both intraoperatively and postoperatively decreases pain scores, reduces opioid consumption, and promotes faster return of bowel function following abdominal surgery. The purpose of this trial was to determine if intravenous lidocaine limited to the intraoperative period reduces length of hospital stay and improves functional recovery following abdominal hysterectomy. METHODS: Following Research Ethics Board approval and informed consent, women of American Society of Anesthesiologists' class I and II undergoing abdominal hysterectomy were assigned randomly to lidocaine and control groups. Lidocaine subjects received an intravenous bolus of 1.5 mg.kg(-1) followed by an infusion of 3 mg.kg(-1).hr(-1), while control subjects received matching placebo. Patients, anesthesiologists, and study personnel were blinded, and anesthesia and multimodal perioperative analgesia were standardized. The primary outcome of this trial was discharge from hospital on or before the second postoperative day (POD2). Additional criteria were assessed for secondary outcomes, i.e., discharge fitness on POD2, length of hospital stay, opioid use, numeric rating scores for pain, quality of recovery, and recovery of bowel function. RESULTS: Ninety of the 93 women who were recruited completed the study protocol. The characteristics of the patients in both groups were similar-lidocaine group (n = 44) and control group (n = 46)-and no difference was noted between groups in the numbers of women discharged from hospital on POD2 (10 lidocaine, 15 control; P = 0.295). Days to discharge fitness (P = 0.666) and length of hospital stay (P = 0.456) were also similar. Differences in opioid consumption, pain scores, and recovery were neither clinically nor statistically significant. CONCLUSION: Intraoperative administration of intravenous lidocaine did not reduce hospital stay or improve objective measures of analgesia and recovery following abdominal hysterectomy. This trial was registered at ClinicalTrials.gov (NCT00382499).

Designing and evaluating assessment-based interventions to reduce stereotypy among adults with autism in a community job.

We designed and evaluated assessment-based interventions to reduce stereotypy among three adults with severe autism in a community job setting. An initial descriptive assessment, conducted during the regular work routine in the employing company, indicated that stereotypy occurred while the supported workers were waiting for work assignments or when they stopped working on an assigned task. An on-the-job functional analysis was then conducted; the results showed that the stereotypy of each worker was not maintained by socially-mediated consequences. Individualized interventions were then designed for increasing work behavior to compete with stereotypy by restructuring the job routine to reduce wait time and/or prompting and praising work behavior more frequently. The interventions increased work behavior and were accompanied by decreased stereotypy for each worker. Guidelines for practitioners and future research directions are offered, focusing on the use of assessment-based interventions for reducing stereotypy within community jobs.

Rapid training of a community job skill to nonvocal adults with autism: an extension of intensive teaching.

We evaluated an intensive program in a simulated format for rapidly teaching a job skill to nonvocal adults with autism. Following baseline probes with a new work task of assembling mailing boxes at a publishing company, 3 supported workers individually received repeated teaching sessions at a simulated work site. All workers met criterion with 1 day of simulation teaching, with subsequent criterion level performance upon returning to the job (1 worker required booster trials). Intensive teaching did not occasion problem behavior nor unhappiness indices. Improved work performance also occurred with two generalization tasks involving different materials. Implications for practitioners focus on improving worker performance without interfering with work completion that often accompanies on-the-job training. Potential applications of intensive programs for rapidly teaching other skills are discussed.

Increasing independence of adults with autism in community activities: a brief, embedded teaching strategy.

We evaluated a brief, embedded teaching strategy for increasing the independence of adults with autism in performing community activities. Initially, community situations were observed to identify an activity that a support staff was performing for an individual. The staff person was then trained to implement SWAT Support (say, wait and watch, act out, touch to guide) involving least-to-most prompting and praise to teach the individual on the spot to complete the activity. SWAT Support was implemented by support staff with 3 adults during break activities at a community job (Study 1), with 1 adult in a grocery store (Study 2), and with another individual in a secretary's office (Study 3). All applications of embedded teaching were accompanied by increased participant independence, which generally maintained across follow-up periods of up to 33 weeks. Results are discussed regarding how practitioners could use the teaching strategy to reduce staff and caregiver completion of activities for adults with autism and increase active community participation.

Simulation training of community job skills for adults with autism: a further analysis.

We evaluated the benefits of training work skills in a simulated situation to adults with autism by examining their performance at a job site. In the first study, simulation training on new work tasks included the same materials and job coach from the job setting (i.e., a common stimuli approach to promote generalization). In the second study, each participant received training on new work tasks using materials that were different from those in the job setting. In both studies, simulation training was accompanied by improvement in each participant's subsequent job performance. Results are discussed regarding the importance of using research-based procedures in supported work versus practices that are currently popular but not necessarily based on research. Working guidelines are offered for using simulation training to promote more success in supported work among adults with disabilities on the severe end of the autism spectrum.

Remediating minimal progress on teaching programs by adults with severe disabilities in a congregate day setting.

We evaluated a modified teaching approach for improving the performance of adults with severe disabilities who were making minimal progress on teaching programs in a congregate day setting. An approach for enhancing progress was developed for implementation within the ongoing routine of the adult day setting using resources indigenous to the setting. The teaching approach, based on early intensive teaching programs, involved increasing teaching trials, adding another consequence to the reinforcement component, and reducing distractions. Improved progress accompanied the approach with each of 4 participating adults. Measures of happiness and problem behavior showed no detrimental effect on quality of life. Advantages and disadvantages of the teaching approach are discussed regarding implications for practitioners.