Debbie Champ, R.N.
Susan J. Farrell, Ph.D.
Royal Ottawa Hospital
This paper provides a case study of a training session developed for Unregulated Care Providers (UCPs) in a group home setting regarding challenging behavior presented by a person with a Developmental Disability and Obsessive-Compulsive Disorder. UCP is the Canadian term for individuals who provide direct care to people with developmental disability living in the community. UCPs are not members of a regulated profession. Different terms, such as direct care providers, direct support professionals, or paraprofessionals, are used in other countries. Training sessions were designed for UCPs to improve their knowledge of mental health problems, assist in reframing the view of a challenging behavior, and develop new management strategies. These strategies were based on a new understanding of effective ways to reduce challenging behavior and can be an effective method of consultation by professional staff. Discussion of the challenges faced by UCPs, followed by a description of the consultation team, the client assessed, the training session developed, and its outcomes will be provided in this article. The lessons learned in ensuring the success of future training strategies for UCPs are subsequently reviewed. This paper will profile some of these strategies.
Unregulated Care Providers
UCPs in the United States, Canada, and other countries often have little formal education and training in intellectual disabilities, mental illness, and behavioral principles (Oliver & Skillman, 2002; Morgan, 1990). They are often younger adults, with little experience other than training received on-the-job (Aylward, Schloss, Alper, & Green, 1995; Morgan, 1990; Smalley, Certo, & Goetz, 1997).
UCPs often lack formal education and training in dual diagnosis and are unprepared to provide specialized care for a person with the dual diagnoses of a developmental disability and a mental illness, especially when the symptoms of illness are expressed through challenging behavior and aggression. This lack of training leads to missed opportunities to prevent problems from escalating as they may be unaware that the person's behavior communicates an internal state, arising from the mental illness or a response to environmental stressors (Pokrzywinski & Powell, 2003; Oliver, Leimkuhl & Skillman, 2002). UCPs caring for people with a dual diagnosis (DD) (developmental disability and mental illness) and challenging behaviors often view behaviors as being volitional and use behavioral techniques to decrease challenging behaviors, frequently with poor success (Davidson et al., 1995). Once a perception of a behavior is formed it may be difficult to change, as UCPs may act in ways that reinforce their perceptions (Karan, Harrington, & Broday, 1993; Oliver, Leimkuhl, & Skillman, 2003). UCPs may fail to see how their behavior or environmental factors impact the expression of present mental illness within the person with developmental disabilities and therefore react to challenging behaviors once they occur (Oliver, Leimkuhl, & Skillman, 2002; Smalley, Certo, & Goetz, 1997). When the person with dual diagnosis' behavior escalates and aggression occurs, intervention strategies may be influenced by a misunderstood view of what the behavior means; for example, UCPs may say, "They are just doing it to get attention" and withdraw attention or act punitively in response to the behavior. Studies have demonstrated that at times, staff unknowingly reinforce challenging behaviors and punish behavior indiscriminately (Anderson, 1987).
Although UCPs caring for persons with a DD are highly motivated to provide care, they often do not have the necessary skills to meet the person's specialized needs (Oliver, Leimkuhl, & Skillman, 2003). When UCPs are asked what they need to provide care for people the DD, they report that they have inadequate training and desire more (Oliver, Leimkuhl, & Skillman, 2003). Also, when UCPs are asked to prioritize their 'knowledge needs' they rank as highest, needing to know more about mental health issues, handling crisis situations, developmental disabilities, and using non-aversive behavioral interventions (Oliver, Leimkuhl, & Skillman, 2003). Studies have demonstrated that formal training increases UCPs' knowledge of how to manage the needs of people with a developmental disability, leads to a more positive view, and increases the UCPs skill at managing challenging behavior (Oliver, Leimkuhl, & Skillman, 2003). In combination with appropriate pharmacological treatment, improved knowledge and a more positive view leads to an improvement in people with challenging behavior (Corrigan, Yudofsky, & Silver, 1993).
Using a didactic teaching approach, UCPs can be taught strategies to reduce challenging behaviors by adopting a view of behaviors as symptoms of mental illness. Strategies aimed at decreasing underlying anxiety have been found to be effective in reducing compulsions and aggression in persons with Obsessive-Compulsive Disorder (OCD) and developmental disability (Chansky, 2000). This paper will profile some of these strategies. Training sessions alone are not enough to change the care provided by UCPs (Andersen, 1987). When training sessions are used in conjunction with appropriate medication and other training techniques, they can be a successful component of the consultation provided by Dual Diagnosis Consultation programs in the community.
Overview of the Royal Ottawa Hospital Dual Diagnosis Consultation Outreach Team
The Dual Diagnosis Consultation Outreach Team was developed in November 2001 by a Provincial Psychiatric Tertiary Care Hospital, the Royal Ottawa Hospital. The mandate of the team is to provide consultation (including assessment and treatment planning) and education to primary care givers and hospital settings, and to assist in the ongoing care of persons with a DD. This includes an urban and rural catchment area. The primary activities of the team include clinical consultation services, education to UCPs, research, and evaluation. Persons with a DD who receive services are between the ages of 18-65 and display a range of psychiatric diagnoses, cognitive levels, and etiologies of their developmental disability, and related (or comorbid) medical conditions.
The team is comprised of a Psychiatrist, Psychologist, Psychometrist, two Registered Nurses, two Social Workers, a Speech and Language Pathologist, and an Occupational Therapist. The case presented in this paper involved the primary services of a Registered Nurse, a Psychologist, a Psychiatrist, and input from other members of the multi-disciplinary team.
The person with a DD referred for consultation was a male in his early 30's with a diagnosis of autism, severe developmental disability, and urinary incontinence. He was referred to the team by his family physician due to an increase in long-standing aggression and for "compulsive" stealing behavior, particularly others' food and beverages. He is non-verbal and the extent of his receptive language was not known at the time of the initial consultation.
During the initial behavioral observations, it was determined that the reported aggressive behavior was in response to the thwarting of his ritualistic and compulsive behaviors exhibited in times of transition or change. Due to the presence of ritualistic twirling behaviors when climbing out of the van, excessive drinking, and the consideration of escalating anxiety and aggression when behaviors are thwarted, a diagnosis of OCD was given to the individual. This diagnosis was crucial both in the subsequent treatment recommendations (pharmaceutical and behavioral) and the conceptualization of the individual's target behaviors. In addition, the reasons for the failure of the existing behavioral program were apparent; isolating the DD client in a locked time-out room following his aggressions or inserting excessive amounts of salt into cups to attempt to thwart his consumption of others' beverages were not effective as they provided only consequences designed to decrease the frequency of the compulsive behaviour, but did not provide efforts to understand, address and reduce such behaviors.
OCD is a common psychiatric illness occurring in 1-2% of the general population and in 3.5% of persons with developmental disability (Gedye, 1992; Rasmussan & Eisen, 1990; Vitiello, Spreat, & Behar, 1989). It is characterized by obsessive thinking and repetitive, purposeful behaviors directed to mitigate obsessive thoughts (Lew, 1995). According to the DSM IV (American Psychiatric Association, 2000), symptoms must cause significant impairment in daily functioning. OCD in the person with developmental disability may be expressed as persistent repetitive behavior that escalates to aggression when the underlying anxiety is not addressed and compulsive behaviors are thwarted (American Psychiatric Association, 2000; Lew, 1995). The diagnosis, in persons with a developmental disability and impaired communication, often requires observation of compulsive behavior rather than on the expression of subjective discomfort, resistance to compulsions, or subsequent distress (Lew, 1995). These compulsive behaviors can be effectively differentiated from other stereotypical behaviors associated with other diagnoses (e.g., autism) by observance of anxiety when compulsions were thwarted (Vitiello, Spreat, & Behar; 1989).
One of the key aspects to the diagnosis of OCD in the case study was the differential understanding of the target behaviors that the diagnosis gave to the UCPs. It quickly became evident that the UCPs had no exposure to or experience with OCD and, to date, had viewed the individual's behavior as wilfully deceitful and completely under voluntary control. Understanding the disorder and ways to manage the challenging behaviour became the focus of the educational series with the UCPs.
Educational Session for Unregulated Care Providers
Unregulated Care Providers (UCPs) who worked directly with the client were brought together at the group home for a two-hour educational session with the Dual Diagnosis Outreach Team Psychologist and Nurse. The session had a three part focus: (a) to improve the knowledge of UCPs of OCD in the person with a developmental disability, (b) to reframe UCP attitudes towards the individual and his behavior, (c) to provide new behavior management strategies; and, (d) to review recommended targeted treatment. Using a didactic format, OCD was described as an anxiety disorder with a biological etiology and a chronic course.
Educational Component: Knowledge. It was explained that in the population of persons with developmental disabilities, lower cognitive skills and poor verbal abilities make it difficult to express anxiety and the obsessive thoughts characterized by this disorder (Gedye, 1992; Vitiello, Spreat, & Behar; 1989); therefore, environmental triggers and influences may be missed as the individual attempts to relieve anxiety by performing compulsive acts. An opportunity was provided for UCPs to ask questions to ensure understanding of the view provided. A better awareness of mental health issues benefits both UCPs and the persons with DD (Oliver, Leimkuhl, & Skillman, 2003).
Education Component 2: Reframe UCP Attitudes. UCPs perceived the individual's behavior as volitional and attached negative descriptors such as "stealing" drinks. This view of the behavior was reinforced when the individual satisfied his compulsion to drink by taking drinks left unattended. It is known that the more the UCPs judge an individual's behavior as being volitional the more anger UCPs feel and the less often UCPs will respond to help (Dagnan & Cairns, 2005). When the individual would pick up items in his home and store them in the corners of his room, UCPs saw further evidence and judged the individual as being a thief. The educators challenged the UCPs' belief that the individual was knowingly taking what did not belong to him as the act of "stealing" denotes. It was suggested that UCPs adopt a new view of the individual by re-framing the challenging behaviors as compulsions under limited volitional control (Gedye, 1992). Anxiety as the underlying trigger for challenging behavior was emphasized and the limited options of the client to communicate his distress were reinforced.
Education Component 3: Management Strategies. Episodes of aggression had been approached with physical restraint and seclusion in a room designed for that purpose. Despite years of this behavioral approach targeting reduction in aggressions, these behaviors had not decreased and the UCPs were frustrated and fearful of the episodes of escalating aggression that included biting, scratching, and hitting. This is in keeping with findings that seclusion and restraint do not teach coping skills, but rather cultivate distrust and dislike between UCP and individuals (Corrigan, Ydofsky, & Silver, 1993). A cycle of escalating anxiety and aggression, physical restraint, and seclusion leading to further anxiety and increased compulsions had been established.
An "anxiety curve" with a peaked aggressive episode was shown to staff to demonstrate the progressive course of a behavioral outburst. UCPs were asked to identify symptoms of the client for each step of the curve and then to brainstorm interventions for each progressive step; from early, middle, late, to too-late periods. UCP participation was important to improve acceptability of the intervention strategy and increase the likelihood they would be used (Elliott, 1988; Pokrzywinski & Powell, 2003). It was suggested that individualized behavioral strategies coupled with appropriate psychopharmacology would lessen the use of seclusion and physical restraint, and reduce aggressive episodes.
UCPs were asked to discontinue the aversive approach of putting salt in drinks and change the use of the word "steal" to "take." The individual's own drink cup was replaced by an easily recognized colored cup and UCPs were asked to offer verbal praise when he used his own. Other drink cups were kept out of eyesight as much as possible. UCPs would phase out the use of harmful or ineffective strategies.
An interactive discussion was facilitated to discuss the difficulties non-verbal persons have to express anxiety. It was agreed that an increase in compulsive behaviors could be viewed as communication and an indication of increased anxiety. Readings on behavioral approaches to symptom management were given to UCP participants to increase familiarity with basic behavioral intervention principles (Schinke & Wong, 1977). Interventions to reduce day to day stress in the person with DD were agreed upon and reviewed.
Education Component 4: Targeted Treatment. Individuals with DD may be given medications targeting aggressive behavior rather than a psychiatric diagnosis (Davidson et al., 1994). To ensure treatment targeted the diagnosis rather than the behavior, a seritonergic medication, known to be effective with OCD and persons with developmental disability, was introduced and the long time use of an older antipsychotic medication was tapered and discontinued (Cook, 1990; Gedye, 1992). It was desired that UCPs would view a reduction in challenging behaviors, facilitated by the seritonergic medication, to be resulting from introduction of new behavior strategies that would reinforce the new approach and contribute to an improved UCP attitude (Schinke & Wong, 1977). The role and purpose of medications were discussed along with side effects.
Outcomes of Educational Session
Several outcomes occurred following the educational sessions. Most importantly, there was a change in UCP perception of the challenging behavior from volitional misbehavior to symptom expression of a psychiatric disorder, and improved understanding of the client and his anxiety triggers. A reported change in attitude and behavioral approach used by UCPs was demonstrated by earlier identification and intervention as the individual became anxious. Overall, the number of aggressive episodes decreased.
At the completion of the education session, UCPs expressed that they felt better equipped to assist the individual on a day-to-day basis, and at times of stress. Over the following two months, it was reported that the individual was placed in the time-out room four times, a reduction from eleven times the previous month. He was reported to be taking drinks and performing rituals less often. The satisfaction survey completed by UCPs six months following the consultation process indicated that they were mostly satisfied with the recommendations offered and it had helped a great deal to receive a better understanding of their client and how to deal with him.
Limitations and Lessons Learned
Although an interactive teaching style was used, it was expected that instruction alone would not be sufficient to change staff behavior (Aylward, et al.,1996; Pokrzywinski, & Powell, 2003; Realon, Lewan, & Wheeler, 1983; Reid & Whitman, 1983 Smalley, Certo, & Goetz, 1997). Additional instructional techniques and a more intensive feedback method could have been incorporated to improve outcomes. Modeling and role playing to practice new skills could have been used to enhance the learning (Andersen, 1987; Payan & Patterson, 1974). As well, providing UCPs with oral and written feedback from supervisors when they demonstrated success with new strategies could have been introduced, as studies have demonstrated their effectiveness in changing staff behavior (Aylward et al., 1996). In addition, supervisory staff could have been offered a train-the-trainer or teacher training session to teach supervisors to use cueing and praise when staff demonstrated improved management strategies (Aylward et al., 1996; Montegar, Reid, Madsen, & Ewell, 1977; Realon, Lewan, & Wheeler, 1983) and the importance of offering written feedback to staff on a regular basis (Realon, Lewan, & Wheeler, 1983; Suda & Miltenberger, 1993; Pokrzywinski & Powell, 2003). Additional outcome data could have been gathered as well.
Successful Strategies for Future Sessions
From this experience, strategies to improve the success of future UCP education sessions are offered. In the planning phase it is recommended to have designated staff (full-time, part-time, and management representative) with whom one plans the session with and to do a needs assessment prior to the session. Also, during the session recognize and praise efforts of good interventions already being used (Montegar et al., 1977). Encourage staff to brainstorm ways to improve consistency across UCPs and settings. Model strategies, don't just lecture about them. As UCPs return to the work setting, encourage supervisors to model strategies and to praise UCPs for their efforts (Pokrzywinski & Powell, 2003). Tracking and reporting can ensure maintenance of inter-staff reliability (Aylward et al., 1996). Regular staff meetings where staff share what is working and to increase consistency would be important.
Summary And Future Directions
Aggressive behavior is the number one threat to people with a developmental disability continuing to live in the community (Davidson, Cain, Sloane-Reeves, & Giesow, 1995; Davidson, Cain, Sloane-Reeves, & Van Speybroech, 1994). Psychiatric symptoms expressed as challenging behavior in the DD person can interfere with the lives of others, contribute to burnout, and risk bodily injury to staff (DesNoyers Hurley, Hurley, & Sovner, 1991). UCPs who perceive behaviors as under the individual's control may develop negative beliefs that reinforce the perception and interfere with the introduction of more effective strategies (Karan et al.,1993).
In the training session, new information was presented that challenged UCPs' existing view of the individual. UCPs were encouraged to draw their own conclusions once the alternative view of the client was presented. New strategies to manage the individual's anxiety and compulsive behaviors were developed by staff once a framework was offered. UCPs providing direct care in a group home setting to a person with OCD and developmental disability can be taught to reframe their view of the individual and come up with individualized strategies to reduce the individual's anxiety and challenging behaviors. Didactic educational sessions that emphasize understanding of the psychiatric disorder and reframing of behavior from volitional to symptom expression can be an effective means of changing the UCP's approach. As it is difficult to change a UCP's view of the individual once it is established, educational sessions alone may not sustain the use of new approaches. However, what is presented is a useful framework for the introduction of effective instruction strategies for Unregulated Care Providers.
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