How does systemic engagement differ within cases that have severe mental health disorders from non-severe mental health disorders?
Running head: SYSTEMIC ENGAGEMENT AND TREATMENT OUTCOMES
SYSTEMIC ENGAGEMENT AND TREATMENT OUTCOMES
Systemic Engagement: Intervention that Fosters Treatment Outcomes Among Individuals Diagnosed with IDD and Co-Occuring Psychiatric Disorders.
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Abstract
The purpose of this study will be to investigate the impact of a new tool, the Systemic Treatment Plan, on the outcomes of the treatment of individuals diagnosed with Intellectual and Developmental Disorders (IDD) and co-occurring mental/behavioral health conditions. This tool is used to more clearly organize, articulate, and measure systemic goals for each individual served. The researcher hypothesizes that using the Systemic Treatment Plan will improve systemic engagement, result in more rapid systems change, and result in less emergency service use. Data will be collected from a previous study conducted using this tool where two clinicians’ (of equivalent skill level) caseloads were selected for comparison. One clinician was trained and coached in using the Systemic Treatment Plan and one was not. Random sampling was used to identify the treatment group which received systemic engagagement in treatment versus the control group. Use of this tool was the independent variable. The dependent variable included: 1) service outcome data from a large agency database (i.e., use of crisis response and other emergency services); 2) pre- and post- ABC scores; 3) pre- and post- RSQ scores; and 4) completion of a systemic satisfaction survey at the end of the experimental period. Data analysis from this study included T-test parametric inferential statistics but this proposed study will be analyzing the data using Multivariate analysis of variance (MANOVA) analysis which will be calculated using the Statistical Package for the Social Sciences (SPSS), as well as quality data from the satisfaction survey.
Introduction
People diagnosed withIDD are a diverse group of individuals diagnosed with severe chronic conditions that are based on mental and or physical impairments. These impairments begin at any point during and individual’s development up to 22 years of age and are present for the rest of the person’s life. There is strong evidence to show that disruptive, dangerous, life-threatening, inappropriate, and socially undesirable behaviors by individuals with IDD present major difficulties for family, peers, and other community relationships (Harvey, Boer, Meyer & Evans, 2009). These behaviors tend to be fueled by deficiencies in major life activities such as language, mobility, learning, self-help, and independent living. A combination of these factors leads this vulnerable population to not only become underserved based on their heightened need for care, but also isolated from social support systems due to frequent behavioral challenges. Generally, individuals diagnosed with IDD receive less emotional support and companionship from family members and friends in comparison to individuals that do not have the IDD diagnosis (Rosen & Burchard, 1990). These relationships are crucial in fostering emotional well-being; but due to this gap, individuals with IDD end up receiving much of their support through paid professionals. Hence, the paid professional relationship does have an impact upon the emotional well-being of the individual diagnosed with IDD (Lunsky & Benson, 1999).
Throughout the United States, there are a number of community mental health centers that have programs that cater to individuals diagnosed with IDD and co-occuring disorders. These programs are structure-specific to not only the geographic location, but also available supplemental resources. Despite this, there is a deficiency of treatment strategies for prople diagnosed with intellectual disabilities that utilize systemic engagement.
National Center for Systemic Therapeutic Assessment and Treatment (START) Services spearheaded systemic engagement in treatment planning. First developed and implemented in Massachusetts in 1989, START uses what has been coined as a ‘systems linkage approach’ to service delivery cited by the U.S. Surgeon General’s report as a model that helps overcome disparities in access to mental health care (Charlot & Beasley, 2013). The core philosophy is that there must be an emphasis on solution focused, active communication and decision-making in the system of care, in addition to a better understanding of individual clinical and treatment needs in order to improve service outcomes (Beasley, Weigle & Klein, 2016). START is a best practice, evidence-informed, tertiary care program and community network that enhances capacity toward effective supports for individuals with Intellectual and Developmental Disabilities (IDD) and behavioral health needs. Throughout its lifespan, this program has revealed promising outcomes that include significant reduction in emergency service use as well as improvements in service experiences (Beasley, 2002).
There is extensive data from prior research and recent findings on the positive relationship between the emotional well-being of individuals diagnosed with IDD and the amount of contact or engagement they have with their social support system but despite this, there is still a lack of awareness, recognition and implimentation of these important relationships. Additionally, there are also some gaps in the lack of coordinated care and crisis prevention strategies amongst individuals diagnosed with IDD and this has been shown to have profound impacts on families and other relational dynamics (Krahn, Hammond & Turner, 2006). This proposed study aims at taking an in depth look at these dynamics and how their interrelational aspects affect goal attainment in regards to treatment outcomes.
Statement of the Problem/Scope
The IDD diagnosis is common. According to the Center for Disease Control (2015), about 1 in 6 children in the U.S. had an IDD diagnosis between the year 2006 and 2008. In addition, researchers from the Health Resources and Services Administration (HRSA) in collaboration with the Centers for Disease Control and Prevention (CDC) conducted a 12-year study and determined a prevalence of developmental disabilities in the United States. Data from this study showed that prevalence of this chronic condition increased 17.1% from 1997 to 2008. That’s about 1.8 million more children with IDD between the year 2006 and 2008 compared to a decade earlier (Boyle, Boulet, Schieve, Cohen, Blumberg, Yeargin-Allsopp, Visser & Kogan, 2011). Even though this study’s main focus was on children, it clearly shows that the rates of IDD diagnosis were and are still on the rise which only underscores the increasing need for integrated services and more specialized care for people diagnosed with IDD.
The treatment for people diagnosed with IDD is challenging based on the neurological nature of the condition as well as the complexities of symptoms. Both challenging behaviours (aggression, destructiveness and self-injury) and psychiatric disorders (anxiety, depression, mania and psychosis) are commonplace amongst people with intellectual disability (Allen, Langthorne, Tonge, Emerson, McGill, Fletcher & Kennedy, 2013). Even though there is behavioral interventions present such as ongoing therapy and medical interventions such as psychotropic medications, individuals diagnosed with IDD still struggle to maintain stability from challenging behaviors. Currently, psychotropic medication is the most typical intervention provided for challenging behaviours (Fleming, Caine, Ahmed & Smith, 1996; Harper and Wadsworth, 1993; Kennedy and Meyer, 1998). This is mainly accessed once the behaviors have become unbearable and the individual is sent to an inpatient or outpatient psychiatric hospital for treatment, which is a common practice. Kalb, Beasley, Klein, Hinton & Charlot (2016) described the prevalence of psychiatric hospitalization services among individuals diagnosed with IDD in a study of 3299 individuals with IDD (mean age= 31 years; SD=14 years) and found that 28% of the sample had at least one psychiatric inpatient stay in the prior year of the study.
The current prevailing strategy is one of ‘diagnose and treat’, whereby an individual receives access to intervention once the behavior or emotional problem is firmly established, and by which point considerable cost has been incurred (in terms of the quality of life of the person, their family, and in terms of the financial implications for inpatient hospitalization) and treatments are less likely to be effective (Lowe, Jones, Allen, Davies, James, Doyle, Andrew, Kaye, Jones, Brophy & Moore, 2007). This is mainly because these medications are designed to have specific effects on specific forms of mental health symptoms, but are frequently prescribed for sedative rather than therapeutic effects. Fleming et al., (1996) conducted a study on the aspects of use of psychoactive medications on individuals diagnosed with IDD. The resulting data indicated that 69% of people were receiving psychoactive medication primarily for the control of challenging behaviour and only 8% of them had psychiatric diagnoses. This shows that the medications are used to suppress challenging behaviours and nothing beyond that.
To date, very little has been published on effective responses to stress and behavioral challenges for people with IDD. Outpatient and community mental health centers provide social services that are goal-oriented but the common challenge is the fact that most goals end up not being attained due to the complex nature of the IDD population. Beasley, Weigle & Klein (2016) state that while there is a high prevalence of challenging behavior in the population, there is often a lack of effective supports to assist individuals and systems that face these challenges. It is therefore pertinent to examine cumulative strategies that will be successful in not only preventing but intervening once the challenging behaviors are present. Although the research evidence is somewhat equivocal, there are a number of studies that indicate that the introduction of these approaches may have beneficial impacts on rates of challenging behaviour (Koritsas, Iacono, Hamilton & Leighton, 2008; Toogood, Drury, Gilsenan, Parry, Roberts & Sheriff, 2009; Beadle-Brown, Hutchinson & Whelton, 2012).
Literature Review
Intellectual and Developmental Disability
Intellectual and developmental disability is a term that was suggested to replace intellectual disability in order to highlight the group of developmental conditions characterized by significant impairment of cognitive functions, which are associated with limitations of learning, adaptive behavior and skills (Salvador-Carulla, Reed, Vaez-Azizi, Cooper, Martinez-Leal, Bertelli, 2011). IDD is classified as a neurodevelopmental disorder of brain development whereby there are deficits in the cognitive capacity beginning in early human development (American Psychiatric Association, 2013). There are many conditions under the IDD umbrella. Some IDD conditions are diagnosed using the Diagnostic Manual – Intellectual Disability (DM-ID) while others such as the Prader-Willi syndrome are diagnosed using specialized instruments that are adapted and specially developed for their respective syndromes (Spendelow, 2011). Ideally, the chronic conditions classified under IDD are broad and research to understand the behavioural phenotypes associated with specific genetic causes of intellectual disabilities is still a growing area (Cooper, Melville & Einfeld, 2003).
IDD is in itself frequently accompanied by secondary disabilities. These may include problems in communication, social skills and general adaptive behaviours, all of which are associated with increased risk of challenging behaviours (Emerson, 2001). Bramston & Fogerty (2000) have shown that people with IDD are at risk of psychological stress. An explanation of this risk points to the fact that they are intellectually handicaped, they have problems in appraising and processing information, they have a need for structured and predictable environments, and they have limited behavior. This results in reduced normal life activities as well as relationships and therefore reduced opportunities. For many years, the co-occurrence of IDD and psychiatric disorders was regarded as being related directly to IDD. The current predominant view is that persons with IDD can develop psychiatric disorders additionally and not related to the pre-existing IDD condition (Holland, 1999). IDD conditions come with associated symptoms and many of the challenging behaviors are unique to specific disorders. For instance, Individuals with a diagnosis of Autism Spectrum Disorder (ASD) are significantly more likely to show aggression and disruption to the environment (McClintock, Hall & Oliver, 2003). Having a severe or profound intellectual disability is also associated with frequent rates of challenging behaviors (Chadwick, Kusel & Cuddy, 2008) as well as the presence of certain genetic conditions such as Lesch–Nyhan (Anderson & Ernst, 1994) and cri-du-chat syndrome (Collins & Cornish, 2002). Additionally, some behavioural phenotypes are known to be associated both with specific forms of challenging behaviours and particular forms of functional psychiatric disorders. People with Prader–Willi syndrome, for example, are likely to engage in skin picking at specific body sites (Thompson & Caruso, 2002) and to experience psychosis (Boer, Holland, Whittingtom, Butler, Webb & Clarke, 2002).
Systemic Engagement
Systemic engagement originates from a framework called General system theory (GST) which was introduced in 1949 by Ludwig von Bertalanffy who criticized the mechanistic worldview of classical physics for its inability to explain the attributes of complex organizations like those of wholeness, evolution, self-regulation, and equifinality. (Bertalanffy, 1949). Bertalanffy (1968) conceptualized systems as different running parts that work together towards common goals (equifinality) and concluded that the whole of the system was greater than the sum of its parts. Essentially, if all steakholders (family members, paid caregivers, therapists, psychiatrists, nutritionists, etc.) in an individual diagnosed with IDD’s system worked together and had increased engagement in order to decrease challenging behaviors, the outcomes would be greater than if specific members of the system worked individually.
Systemic engagement is used broadly in numerous schools of psychotherapy. Therapy models that use systems theory such as Strategic Family Therapy (SFT) incorporate strategic thinking that help navigate the presenting problem within couples and familes. The defining characteristics of SFT are that there is a focus on family communication patterns that serve to maintain the problem, treatment goals that derive from the problem/symptoms are presented, a belief that change can be rapid and does not require insight into the causes of the problem, and finally, the use of resistance to promote change by applying strategic interventions (Piercy, Sprenkle & Wetchler, 1996). If similar concepts are used within the social support teams of individuals diagnosed with IDD, it would result in effective treatment outcomes just as it does in psychotherapy. Nonetheless, engaging systems to create long-term changes in outcomes for not only the individual diagnosed with IDD, but their system of support can be a challenging task.
Social support is most associated with positive outcomes for people diagnosed with IDD and some in the scientific community have turned to a position of widespread enthusiasm about the social shaping of interventions for this population.There is some evidence that showcase social factors associated with mental health and mental illness act as determinants for positive well being (Wilkinson & Marmot, 1998). More specifically, the direct relationships between social support and psychological well-being have been examined and proven to be effective with people diagnosed with intellectual disabilities (Lunsky & Benson, 2001). McGillivray & McCabe (2007) further explored this relationship with people diagnosed with IDD that struggle with depressive symptoms and showed a positive correlation as well. Moreover, Lunsky & Benson (2001) conducted a study to show that interpersonal relationships are positively associated with the well-being for people diagnosed with IDD. Horner, Vaughn, Day & William (1996) also demonstrated how the challenging behaviours of 15 young people with severe intellectual disabilities decreased after receiving positive influence and social support from their caregivers.
These studies give plenty of evidence to highlight the importance and effectiveness of systemic engagement whereby active support from the system is crucual at supporting a good quality of life for people with IDD. This is important mainly because people with impairments in verbal skills are typically unable to take advantage of social support in coping with stress (Thomas, Goodwin & Goodwin, 1985). If these strategies were incorporated within service delivery, there would be even greater outcomes. As Beasley et al., (2016) quite eloquently put it, unfortunately, many service delivery systems continue to operate in silos where the medical, mental health, psychological, and social supports provided to individuals with IDD are not integrated. Majority of the programs that utilize integrated service delivery systems have been developed and implemented in the U.K. and Australia. For instance in the U.K., there is a program called the Eearly Intensive Behavioral Intervention (EIBI). EIBI is a treatment program that focuses on preventative measures to decrease challenging behaviors on children with Autism. It integrates in-home service delivery by Applied Behavior Analysts (ABA), trained therapists, Local Education Authority (LEA), crucial family members and other direct care support staff. To showcase it’s effectiveness using a semi-structured format, Grindle, Kovshoff, Hastings & Remington (2009) interviewed 53 parents whose children had received 2 years of EIBI to obtain detailed first person accounts of the impact of EIBI on family life and support systems. In general, parents were positive about EIBI, its benefits for them, their child, and the broader family.
Koritsas et al., (2008) are researchers from Australia and they conducted a study to investigate the effectiveness of enhanced interractions between support workers and its impact on the decrease in challending behaviors among individuals diagnosed with IDD. They examined 12 adults with IDD aged 27–57 years (M ¼ 37 years) residing in three group homes, and their support workers. The support workers completed assessments on three occasions (at baseline, post-training, and at follow-up). The results showed that residents exhibited an overall decrease in anxiety, self-absorbed behaviour, disruptive behaviour, and problem behaviour in general. There was also an overall decrease in perceived support needs. The results from this study clearly contribute to a growing body of evidence demonstrating favourable outcomes of systemic engagement and challenging behaviour with people diagnosed with IDD.
Emotional Well-Being (Crisis)
It is clear that social relationships and stress have significant influences on health and well-being on not only individuals diagnosed with IDD, but individuals not diagnosed with IDD.
An identified trend, evident in the stress literature, involves a change in focus from stress at an individual difference level, to an examination of the construct within groups (Eckenrode and Bolger, 1995). Ideally, individuals within a fairly uniform group may share common stress themes for instance ‘cannot handle change of typical routine’ and that this theme may be a feature of major life events that they experience. This thematic approach to stress appears particularly relevant in groups that share similar environments or lifestyles such as individuals diagnosed with ASD. It allows researchers to build models of perceived threats and vulnerabilities that are particularly relevant to such groups. Indeed the enduring feature of stress, which appears to be common to many people and groups, seem to involve such elements as anxiety, difficultines in coping, and irritability.
People with a mild or moderate intellectual disability represent a group within society in which subjective stress has yet to be systematically researched and whether an intellectual disability is itself an ongoing stressor has also yet to be empirically addressed (Bramston, Fogarty & Cummins, 1999). Nonetheless, the common stress unique to individuals diagnosed with IDD has many different manifestations but mainly irritation or agitation due to limited cognitive understanding, poor problem-solving ability and deficits in social and interpersonal coping skills. Surprisingly, a number of investigators have also examined a related variable, the frustration tolerance of people with an intellectual disability and similarly found little difference from that of non-disabled controls (Angelino & Shedd, 1965; Tebeest & Dickie, 1976). Therefore, the idea that people with an intellectual disability readily fall apart when frustrated or stressed seems to be an outdated, invalid, stereotypic conception. People with a mild or moderate intellectual disability experience some stressors in common with the non-disabled population and some lifestyle stressors which are unique to them as a group (Bramston et al., 1999).
On the other hand, people with IDD can have different responses to trauma based on their developmental level or the IDD condition. People that have reduced skills in the verbal expression of feelings and emotions, reactions to life events may be communicated by changes in behavior (Doyle & Mitchell, 2003; Dunne & Power, 1990). People with IDD are exposed to a variety of biological, social, developmental and psychological stressors, all of which are known to have an impact on their emotional well-being. For instance, people diagnosed with ASD are prone to struggle with constipation issues which constipation, a biological stressor, has a correlation with challenging behaviors such as physical aggression, head hitting, self-biting and destructiveness. It is clearly possible for a person with IDD to display behaviour such as aggression in the absence of any form of psychosis or a personality disorder. Hemmings, Gravestock, Pickard & Bouras (2006) used a symptomatic rather than syndromal-based approach to explore behaviour in a sample of adults with intellectual disability and found that self-injury and aggression were associated with affective disorders while screaming and destructiveness were linked with ASD rather than with more formal functional psychiatric disorders.
Theoretical Framework: Biopsychosocial Perspective
Using a framework that helps explain and better understand the factors that contribute to recurrent mental health crisis situations of individuals diagnosed with IDD is crucial. Crisis situations do cluster amongst individuals diagnosed with IDD in part, due to the fact that different influences or triggers originate from social, psychological, or bio-medical factors. The framework best suitable to approach this issue is the Biopsychosocial Framework, developed by American Psychiatrist, George Engel through his landmark article, “The Need for a New Medical Model: A Challenge for Biomedicine” (Engel, 1977).
Jones, Edwards, & Gifford (2002) state that this model views service utilization as a combination of biological characteristics (e.g., genetic predisposition), psychological factors (e.g., lifestyle, stress, health beliefs), and social conditions (e.g., cultural influences, family relationships, social support). Clearly, it’s a method of assessing and understanding crisis situations through biological, psychological, and social factors with the main principle that all issues relating to the client’s health are as a result of a combination of all three factors for most effective clinical practice. Engel also clearly aimed at understanding all aspects that led to the development of specific medical conditions in order to provide most efficient care. Through a set of personal realizations, the scope of his scientific inquiry expanded to include application of the insights of psychoanalysis and attentiveness to the subjective dimensions of human experience and interpersonal relationships (Brown, 2003). This model has and is currently being utilized by the START program to assess crisis situations and aid in the treatment process. It does so through the emergency assessment whereby the clinician assesses whether the trigger to an individuals crisis is due to a biological factor. For instance, a person struggling with challenging behaviors might be based on a urinary tract infection. The clinician also assesses whether the trigger could be due to a psychological factor. For instance, a flashback from past tramautic event. Finally, the clinician might also assess whether the trigger is associated with a social factor. For instance, a change in routine or hypersensitivity to crowded spaces.
Justification of the Study
Historically, health services and clinical research for individuals diagnosed with IDD have both been greatly underdeveloped and understudied. According to Krahn, Hammond & Turner (2006), the outpatient mental health systems in the U.S. has failed to meet the needs of individuals with IDD and co-occurring challenging behaviors and to date, there are limited programs that have been developed to show effective strategies for engaging with this population. This is mainly due to the over reliance on hospital-based services as well as the stereotypes of IDD etiology by service providers.
Despite this, researchers have begun to address this oversight within the last two decades. This increased interest comes in the light of evidence that people with IDD experience a greater number of life events than their typically developing peers (Hatton & Emerson, 2004) and that the current strategies are costly and somewhat ineffective in terms of decreasing challenging behaviors.
Social service agencies and other programs that cater to the needs of individuals diagnosed with IDD fall behing on integrated systems of care and intervention strategies are psychotropic-based (Krahn et al., 2006). In addition, crisis services are mainly used as interventions once challenging behaviors come to surface and there is a need to focus on preventative measures. Although longitudinal data on effectiveness are required, programs which offer intervention before behaviors become more severe and established clearly offer potentially important evidence for the effectiveness of prevention (Allen et al., 2013). Indeed, prevention of challenging behaviors is favorable to intervention once the behaviors are present. A small number of studies have demonstrated the effectiveness of adopting a function-based approach to early intervention with this population (Kurtz, Chin, Huete, Tarbox, O’Connor, Paclawskyj & Rush, 2003;Wacker, Berg, Harding, Derby, Asmus & Healy, 1998). Of particular relevance is evidence that effective early intervention strategies can be delivered on the scale required to make an impact to the IDD population at large. Matthews, Hudson, Cameron & Gavidia-Payne (2009) described the widespread implementation of a family-based training intervention programs for children with intellectual disabilities and less severe forms of challenging behaviour. But even with this form of systemic engagement where intervention is provided before behaviors become more severe and established, longitudinal data on effectiveness is require for it to be evidence-based.
Notwithstanding the limited studies on the effects of systemic engagement, effective services for individuals with IDD and challenging behavior require a systematic approach to promote positive outcomes (Beasley et al., 2016). In addition, Harvey et al., (2009) conducted a decade long meta-analysis of interventions for challenging behaviours in children with disabilities and concluded that incorporating systems change into the intervention was also related to positive outcomes. Despite this, there is still some limited evidence to indicate interventions that feature more systemic interventions are associated with better outcomes (Carr, Horner, Turnbull, Marquis, McLaughlin, McAtee, Smith, Ryan, Ruef & Doolabbh, 1999; Marquis, Horner, Carr, Turnbull, Thompson, Behrens, Magito-McLaughlin, McAtee, Smith, Ryan & Doolabh, 2000).
Understanding the impact of systemic thinking and engagement on cases that involve individuals diagnosed with IDD and co-occuring disorders in order to avoid recurrent crisis episodes or hospitalizations is a fairly new concept but it is crucial and it can help foster effective provision of services by not only the crisis programs within social service agencies, but also by marriage and family therapy (MFT) clinicians. This study will be important to mental health professionals because systems thinking, the discipline that examines the relationships between essential parts of a problem and determines how to manage those relationships to get positive outcomes is a philosophy that orients the MFT profession. MFT’s as systemic thinkers know that problems can have hidden, indirect cause and spirals out from one problem to touch many. The use of systemic engagement in this study will highlight the impact that systems theory already has on the field of marriage and family therapy. Furthermore, this study will be important to the mental health profession due to the fact that the IDD population is the most underserved population in the mental health field and clinicians will be able to understand and conceptualize the issue of developmental disorders and how the diagnoses affects not only the individual diagnosed, but the support systems involved.
Measures
This study is interested in treatment plan goal attainment for clients enrolled in the START program and the hypothesis is that using the systemic treatment plan will improve clinicians’ systemic engagement, result in more rapid systems change, and result in less emergency service use. In essence, goal attainment is affected by the use of systemic engagement. Use of this tool is the independent variable. The dependent variable will include: 1) service outcome data from SIRS (START Information Reporting System). This will include demographic data and data indicating the use of crisis response and other emergency services; 2) pre- and post- ABC (Abberant Behavior Checklist) scores; 3) pre- and post- RSQ (Recent Stressor Questionnaire) scores; and 4) completion of a systemic satisfaction survey at the end of the experimental period. This study will be looking at two groups. The control group that will be receiving treatment using the standard START treatment plan and the treatment group that will be receiving systemic engagement through the systemic treatment plan. The goals from the systemic treatment plan will be broken down into three levels, primary level, secondary level and tertiary level. These levels are adapted from the World Health Organization public health tertiary care model which is a framework that drives the START program. The model addresses health and social problems in a comprehensive way where it takes a population approach to health promotion and prevention. It considers human factors, characteristics of the source of harm and the environment. It also identifies causes and suggests possible interventions. The interventions are broken down into three different levels. The primary level where interventions target the entire population in order to provide support and education before problems occur, secondary level where interventions are targeted at families or systems involved in a client’s life in order to alleviate identified problems and prevent escalation. Lastly, tertiary level is whereby interventions are client specific and an example of this can be sending an individual to an inpatient psychiatric hospital in order to receive treatment or the involvement of law enforcement in a crisis situation.
Research Questions
Overall, this study hypothesizes that participants who experience systemic engagement in their treatment will have greater goal attainment than participants who set goals without systemic engagement over time. Additionally, this study hypothesizes that participants who experience systemic engagement using the systemic treatment plan will be more committed to their goals than participants who do not use this tool.
The global research question for the proposed study is, “What influence does systemic engagement have on the overall treatment plan goal attainment for people diagnosed with IDD?” Additionally, the following research sub-questions will be examined in the study:
1. What is the importance of secondary and primary level goals?
2. What is the strength of association between secondary and primary level goals?
3. Does systemic engagement decrease the number of psychiatric hospitalizations?
4. How does systemic engagement differ within cases that have severe mental health disorders from non-severe mental health disorders?
Methods
This proposed study will use historical data collected from a previous START research that examined the effects of systemic engagement on individuals diagnosed with IDD and co-occuring psychiatric disorders. The sample consisted of individuals in the caseloads of two START clinicians. Each case load had 20 individuals who were being served in the START program. Each individual in the START program haa a system (treatment team) which comprised of either a Parent/Guardian, Provider Representative (Group Home Manager/Direct Support Staff/Case Manager), Service Coordinator, Board Certified Behavior Analyst, Occupational Therapist, Speech Therapist, Therapist/Counselor, and or a Psychiatrist. A randomized controlled between-subject design was used to compare the goal attainment over time of participants who use systemic engagement with participants who do not use systemic engagement in their treatment plan. The data was gathered between 01/8/2018 and 03/30/2018.
Procedures
Once the two START clinicians’ (of equivalent skill level) caseloads was selected for comparison was identified, One clinician was trained and coached in using the systemic treatment plan and the other was not.
Treatment Group
The START clinician who had individuals in the treatment group obtained goals that were outlined in the systems treatment plan. These goals were obtained through an initial team meeting with all members of each individual’s system. The treatment plan was devided into three different goal categories; primary level, secondary level and tertiary level based on the public health model. As mentioned earlier, the public health approach to crisis intervention falls into three modalities: Primary Level (improved system capacity); Secondary Level (specialized direct services to people at risk of needing emergency services); and Tertiary Level (emergency intervention services) where goals are driven through the need of immediate services such as emergency crisis assessments and mobile support as well as other emergency services such as psychiatric hospitalizations and emergency room visits. The START clinician then obtained ABC and RSQ data scores from a treatment team member in the system who had the most contact with the individual diagnosed with IDD. Through the course of the three months, the START clinician in the treatment group was able to use systemic concepts in order to work through the objectives identified with the goals. At the end of the three months, the START clinician obtained another set of ABC and RSQ data from the same informant. In addition, a systemic satisfaction survey was completed by treatment team members at the end of the experimental period. All data was collected through in-person, through an online portal or over the phone.
Control Group
The START clinician who had individuals in the control group continued providing services using the START plan which is the program’s treatment plan. The START clinician then obtained ABC and RSQ data scores from a treatment team member in the system who had the most contact with the individual diagnosed with IDD. At the end of the three months, the START clinician obtained another set of ABC and RSQ data from the same informant. In addition, a systemic satisfaction survey was completed by treatment team members at the end of the experimental period. All data was collected through in-person, through an online portal or over the phone.
Analysis
Data analysis that will be used to test the hypothesis in this proposed study will be the Multivariate analysis of variance (MANOVA) which tests for the difference in two or more vectors of means. The study is interested in goal attainment on both control and treatment groups. A multivariate F value will be obtained based on a comparison of the error of variance or covariance matrix and the effect variance or covariance matrix. This is because the measures might be correlated and the correlation would need to be taken into account when conducting the significance test.
References
Allen, D., Langthorne, P., Tonge, B., Emerson, E., McGill, P., Fletcher, R., & Kennedy, C. (2013). Towards the Prevention of Behavioural and Psychiatric Disorders in People with Intellectual Disabilities. Journal Of Applied Research In Intellectual Disabilities, 26(6), 501-514.
Anderson, L. T., & Ernst, M. (1994). Self-injury in Lesch-Nyhan disease. Journal of Autism and Developmental Disorders 24, 67–81.
Angelino, R., & Shedd, C.L. (1965). A study of the reactions of mentally retarded children as measured by the Rosenweig Picture-Frustration Study. Psychological Newsletter, 8, 49-54.
Beasley, J. B. (2002). Trends in coordinated and planned mental health service use by people with dual diagnosis. In J. Jacobson, & R. Fletcher (Eds.) Contemporary Dual Diagnosis: MH/MR Service Models, Volume II: Partial and Supportive Services (pp. 35-51). Kingston, NY: NADD.
Beasley, J. B., Weigle, K., & Klein, A. (2016). Diagnostic, Treatment and Service Considerations to Address Challenging Behavior: A Model Program for Integrated Service Delivery. Health Care for People with Intellectual and Developmental Disabilities Across the Lifespan (pp. 1629-1644). New York, NY: Springer.
Beadle-Brown, J., Hutchinson, A., & Whelton, B. (2012). Person-Centred Active Support-Increasing choice, promoting Independence and reducing challenging behaviour. Journal of Applied Research in Intellectual Disabilities 25, 291–307.
Bertalanffy, L. V. (1949). Zu einer allgemeinen Systemlehre. Biologia Generalis 19/1: 114–129.
Bertalanffy, L. V. (1968). General system theory: foundations, development, applications. George Braziller, New York.
Boer, H., Holland, A., Whittingtom, J., Butler, J., Webb, T., & Clarke, D. (2002). Psychotic illness in people with Prader Willi syndrome due to chromosome 15 maternal uniparental disomy. The Lancet 359, 135–136.
Boyle, C. A., Boulet, S., Schieve, L., Cohen, R. A., Blumberg, S. J., Yeargin-Allsopp, M., Visser, S., & Kogan, M. D. (2011).Trends in the Prevalence of Developmental Disabilities in US Children, 1997–2008. Pediatrics May 2011; DOI: 10.1542/peds.2010-2989
Bramston, P., Fogarty, G., & Cummins, R. A. (1999). The nature of stressors reported by people with an intellectual disability. Journal ofApplied Research in Intellectual Disabilities, 18 (6), 435-456
Bramston, P., & Fogerty, G. (2000). The assessment of emotional distress experienced by people with an intellectual disability: A study of different methodologies. Research in Developmental Disabilities 21, 487–500.
Brown, T. (2003). George Engel and Rochester’s biopsychosocial tradition: Historical and developmental perspectives. In R. M. Frankel, T. E. Quill, & S. H. McDaniel (Eds.), The Biopsychosocial Approach: Past, Present, Future (pp. 199–218). Rochester, NY: University of Rochester Press.
Carr, E. G., Horner, R. H., Turnbull, A. P., Marquis, J. G., McLaughlin, D. M., McAtee, M. L., Smith, C. E., Ryan, K. A., Ruef, M. B. & Doolabbh, A. (1999). Positive Behaviour Support for People with Developmental Disabilities: A Research Synthesis. AAMR, Washington, DC.
Center for Disease Control. (2015). National Center on Birth Defects and Developmental Disabilities. Retrieved in May 2017 from: https://www.cdc.gov/ncbddd/developmentaldisabilities/features/birthdefects-dd-keyfindings.html
Chadwick, O., Kusel, Y., & Cuddy, M. (2008). Factors associated with the risk of behaviour problems in adolescents with severe intellectual disabilities. Journal of Intellectual Disability Research 52, 864–876.
Charlot, L., & Beasley, J. B. (2013). Intellectual Disabilities and Mental Health: United States-Based Research. Journal of Mental Health Research in Intellectual Disabilities, 6:74–105, 2013
Collins, M. S. R., & Cornish, K. (2002). A survey of the prevalence of stereotypy, self-injury and aggression in children and young adults with Cri du Chat syndrome. Journal of Intellectual Disability Research 46, 133–140.
Cooper, S. A., Melville, C. A., & Einfeld, S. L. (2003). Psychiatric diagnosis, intellectual disabilities and diagnostic criteria for psychiatric disorders for use with adults with learning disabilities/mental retardation (DC-LD). Journal of Intellectual Disability Research, 47, 3–15.
Doyle, C., & Mitchell, D. (2003). PTSD and people with learning disabilities: A literature based discussion. Journal of Learning Disabilities, 7(1), 23–33.
Dunne, T., & Power, A. (1990). Sexual abuse and mental handicap: Preliminary findings of a community-based study. Mental Handicap Research, 3(2),111–125.
Eckenrode, J., & Bolger, N. (1995). Daily and within-day event measurement. In S. Cohen, R.C. Kessler & L. Underwood Gordon (Eds.), Measuring stress (pp.80-101). New York: Oxford University Press.
Emerson, E. ( 2001). Challenging Behaviour:Analysis and Intervention in People with Severe Intellectual Disabilities. Cambridge: Cambridge University Press.
Engel, G. L. (1977). The need for a new medical model: A challenge for biomedicine. Science, 196, 129–136
Fleming, I., Caine, A., Ahmed, S., & Smith, S. (1996). Aspects of the Use of Psychoactive Medication among People with Intellectual Disabilities Who Have Been Resettled from Long-Stay Hospitals into Dispersed Housing. Journal of Applied Research in Intellectual Disabilities 9 (3): 194–205.
Giele, J. Z., & Elder, G. H., jr. (1998). Methods of lifecourse research: Qualitative and quantitative approaches. Thousand Oaks, CA: Sage. Pp.22.
Harper, D. C., & Wadsworth, J. S. (1993). Behavioural Problems and Medication Utilization. Mental Retardation 31 (2): 97–105.
Harvey, S. T., Boer, D., Meyer, L. H. & Evans, I. M. (2009). Updating a meta-analysis of intervention research with challenging behaviour: treatment validity and standards of practice. Journal of Intellectual & Developmental Disability 34, 67–80.
Hatton, C., & Emerson, E. (2004). The relationship between life events and psychopathology amongst children with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities 17, 109–17.
Hemmings, C. P., Gravestock, S., Pickard, M., & Bouras, N. (2006). Psychiatric Symptoms and Problem Behaviour in People with Intellectual Disabilities, Journal of Intellectual Disability Research 50: 269–76.
Holland, A. J. (1999). Psychiatry and mental retardation. International Review of Psychiatry 11, 76–82.
Horner, R. H., Vaughn, B. J., Day, H. M., & William, A. (1996). The Relationship between Setting Events and Problem Behaviour: Expanding our Understanding of Behavioural Support, in Koegel, L. K., Koegel, R. L., & Dunlap, G. (eds) Positive Behavioral Support: Including People with Difficult Behavior in the Community. Baltimore: Brookes.
Jones, M., Edwards, I., & Gifford, L. (2002). Conceptual models for implementing biopsychosocial theory in clinical practice. Manual Therapy. (7) 2–9.
Kalb, L., Beasley, J., Klein, A., Hnton, J., & Charlot, J. (2016). Psychiatric hospitalization among individuals with intellectual disability referred to the START crisis intervention and prevention program. Journal of Intellectual Disability Research. (In Print).
Kennedy, C. H., & Meyer, K. A. (1998). The Use of Psychotropic Medication for People with Severe Disabilities and Challenging Behaviour: Current Status and Future Directions. Journal of the Association for Persons with Severe Handicaps 23: 83–97.
Koritsas, S., Iacono, T., Hamilton, D., & Leighton, D. (2008). The effect of active support training on engagement, opportunities for choice, challenging behaviour and support needs. Journal of Intellectual and Developmental Disability 33, 247–256.
Krahn G. L., Hammond L. & Turner A. (2006) A cascade of disparities: health and health care access for people with intellectual disabilities. Mental Retardation and Developmental Disabilities Research Reviews 12(1), 70–82.
Kurtz, P.F., Chin, M. D., Huete, J. M., Tarbox, R. S. F., O’Connor, J. T., Paclawskyj, T. R., & Rush, K. S. (2003). Functional analysis and treatment of self-injurious behaviour in young children: a summary of 30 cases. Journal of Applied Behaviour Analysis 36, 205–219.
Locke, E. A., & Latham, G. P. (2002). Building a practically useful theory of goal setting and task motivation: A 35-year odyssey. American Psychologist, 57, 705-717.
Lowe, K., Jones, E., Allen, D., Davies, D., James, W., Doyle, T., Andrew, J., Kaye, N., Jones, S., Brophy, S., & Moore, K. (2007). Staff training in positive behaviour support: impact on attitudes and knowledge. Journal of Applied Research in Intellectual Disabilities 20, 30–40.
Lunsky, Y., & Benson B. A. (1999). The social circles of adults with mental retardation, as viewed by their caregivers. Journal of Developmental and Physical Disabilities 11, 115–29.
Lunsky, Y., & Benson B. A. (2001). Association between perceived social support and strain, and positive and negative outcome for adults with mild intellectual disability. Journal of Intellectual Disability Research 45, 106–114.
Marquis, J. G., Horner, R. H., Carr, E. G., Turnbull, A. P., Thompson, M., Behrens, G. A., Magito-McLaughlin, D., McAtee, M. L., Smith, C. E., Ryan, K. A., & Doolabh, A. (2000). A meta-analysis of positive behaviour support. In:Contemporary Special Education Research (R. Gersten, E. P. Schiller & S. Vaughn eds), pp. 137–178. Lawrence Erlbaum Associates, New York, NY.
Matthews, J. S., Hudson, A., Cameron, C., & Gavidia-Payne, S. (2009). Development of signpost for building better behavior programme. Journal of Policy and Practice in Intellectual Disabilities 6, 132.
McGillivray, J. A., & McCabe, M. P. (2007). Early detection of depression and associated risk factors in adults with mild ⁄ moderate intellectual disability. Research in Developmental Disabilities 28, 59–70.
Piercy, F. P., Sprenkle, D. H., & Wetchler, J. L. (1996). Family therapy sourcebook. New York: Guilford Press.
Salvador-Carulla, L., Reed, G. M., Vaez-Azizi, L. M., Cooper, S. A., Martinez-Leal, R., & Bertelli, M. (2011). Intellectual developmental disorders: towards a new name, definition and framework for ‘mental retardation/intellectual disability’ in ICD-11. World Psychiatry 10,175–80.
Tebeest, D. L., & Dickie, J. R. (1976). Responses to frustration: Comparison of institutionalised and noninstitutionalised retarded adolescents and nonretarded children and adolescents. American Journal of Mental Deficiency, 80, 407-413.
Thomas, P. D., Goodwin, J. M., & Goodwin, J. S. (1985). Effects of social support on stress-related changes in cholesterol level, uric acid level, and immune function in an elderly sample. American Journal of Psychiatry 142, 735–7.
Thompson, T., & Caruso, M. (2002). Self-injury: knowing what were looking for. In: Self-Injurious Behaviour. Gene-Brain-Behaviour-Relationships (S. Schroeder, M. Oster-Granite &T. Thompson eds), pp. 23–39. American Psychological Association, Washington, DC.
Toogood, S., Drury, G., Gilsenan, K., Parry D., Roberts K., & Sheriff, S. (2009). Establishing a context to reduce challenging behaviour using procedures from active support. Tizard Learning Disability Review 14, 29–36.
Wacker, D. P., Berg, W. K., Harding, J. W., Derby, K. M., Asmus, J. M., & Healy, A. (1998). Evaluation and long-term treatment of aberrant behavior displayed by young children with developmental disabilities. Developmental and Behavioral Pediatrics 19, 260–266.
