Retention, Resilience, and Burnout of Staff Caregivers for Aggressive Adults with DD

DISSERTATION

Presented in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy in the Graduate School of The Ohio State University

Rose E.A. Nevill

Graduate Program in Psychology

The Ohio State University

2017

Dissertation Committee:

Professor Susan Havercamp – Advisor

Professor Marc Tassé

Professor Luc Lecavalier

Professor Jen Wong

Copyrighted by

Rose E. A. Nevill

2017

Abstract

The current study investigated predictors of direct support providers’ retention, burnout, and resilience when working with an adult with a developmental disability who engages in regular physical or verbal aggression. A final sample of 97 caregivers was surveyed at two time points separated by three months. Questionnaires were completed on caregiver psychological variables, the workplace environment, and the adult with DD’s aggression, physical health, and mental health. Results found a 63% retention rate of caregivers in their role working with an aggressive adult. Severity of verbal aggression emerged as a significant predictor of caregiver retention above and beyond other forms of aggression, caregiver psychological variables such as coping styles and resilience, the work environment, and job characteristics. Interpersonal forms of aggression were significantly associated with caregiver burnout and reduced resilience. Retained caregivers reported a significant reduction in both adult with DD aggression and their own burnout compared to validation norms by Time 2. Resilience significantly mediated the effect of adult physical health needs on caregiver burnout. Resilience did not play a role in mediating the effect of adult mental health needs on caregiver burnout. Mindfulness-based coping mediated the effect of adult verbal aggression on caregivers’ sense of personal accomplishment at work.

Results support the need for caregivers to not only receive training on how to respond to verbal aggression and associated covert forms of aggression, but also on effective methods of coping with verbal and interpersonal aggression so as to reduce their likelihood of experiencing burnout and increasing the likelihood of their retention in their caregiving roles. In providing greater support to caregivers on the receiving end of verbal and interpersonal aggression,

researchers and practitioners can help facilitate positive relationships between adults with DD and their caregivers, and in turn positively affect the overall quality of life of adults who engage in aggressive behavior.

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Acknowledgements

I would like to thank my PhD advisor, Dr. Susan Havercamp, and my dissertation committee members for their guidance and support in the development of this project. Special thanks go to

Dr. Betsey Benson for the help she provided with the recruitment process.

A big thank you goes to the participants without whom this study would not have been possible.

Thank you to the following individuals and organizations for helping with the recruitment and execution of this study: Nisonger Adult Behavior Support Services program, Franklin County

Board of Developmental Disabilities, Franklin County provider agencies, Taylor Kachmarik,

Lauren Tepe, Emily Sharick, Gracie Luo, and Taylor Tharpe.

Finally, thank you to my friends and family for their patience and support over the past several years as I completed my PhD.

Vita

2005……………………………………………………. Cape Henry Collegiate School

2010……………………………………………………. B.S. Psychology, B.A. Human Development, Virginia Tech

2012…………………………………………………… M.A. Psychology, The Ohio State University

2011 – 2013……………………………………………. Graduate Teaching Associate, The Ohio State University

2013 – 2016…………………………………………… Adult Behavior Support Specialist, The Ohio State University

2016 – Present…………………………………………. Predoctoral clinical training, Neurobehavioral Unit, Kennedy Krieger Institute and Johns Hopkins School of Medicine

Publications

Nevill, R.E., Hedley, D., Uljarević, M., Wilkins, J., Mulick, J.A., and Butter, E. (under peer review). Adaptive behavior profiles in a clinically referred sample of toddlers with autism spectrum disorders.

Nevill, R.E., Hedley, D., Uljarević, M., Wilkins, J., Mulick, J.A., and Butter, E. (accepted). Language Profiles in Young Children with Autism Spectrum Disorder: A Community Sample Using Multiple Assessment Instruments.

Havercamp, S.M. and Nevill, R.E. (in press). Intellectual Disability. In E. Braaten (Ed.), The SAGE Encyclopedia of Intellectual and Developmental Disorders. Thousand Oaks, CA: Sage Publications.

Nevill, R.E., Lecavalier, L., Stratis, E. A. (2016). Meta-analysis of Parent-Mediated Interventions for Young Children with Autism Spectrum Disorder. Autism, Online First.

Nevill, R.E., Scott, H.M., and Havercamp, S.M (2016). Health research in intellectual and developmental disabilities. In Rubin et al (Eds.), Health Care for people with Intellectual and Developmental Disabilities across the Lifespan (3rd edition). New York: Springer.

Hedley, D., Nevill, R.E., Uljarević, M., Butter, E., & Mulick, J. A. (2016). ADOS-2 Toddler and Module 1 Standardized Severity Scores as Used by Community Practitioners. Research in Autism Spectrum Disorders, 32, 84-95.

Hedley, D., Brewer, N., Nevill, R.E., Uljarević, M., Butter, E., & Mulick, J. A. (2016). The relationship between clinicians’ confidence and accuracy, and the influence of child characteristics, in the screening of Autism Spectrum Disorder. Journal of Autism and Developmental Disorders, 46, 2340-2348.

Hedley, D., Nevill, R.E., Monroy-Moreno, Y., Fields, N., Wilkins, J., Mulick, J., and Butter, E. (2015). Efficacy of the ADEC in a Clinically Referred Sample of Toddlers. Journal of Autism and Developmental Disabilities. Journal of Autism and Developmental Disorders, 45(8), 2337-2348.

Nevill, R.E. and Havercamp, S.M. (2013). Intellectual Disability. In Volkmar, F (2013). Encyclopedia of Autism Spectrum Disorders. New York: Springer Reference.

Nevill, R.E. and White, S.W. (2011). College students’ openness toward autism spectrum disorders: Improving peer acceptance. Journal of Autism and Developmental Disorders, 41, 1619–1628.

Fields of Study

Major Field: Psychology

Table of Contents

Abstract ...... ii Acknowledgements ...... iv Vita...... v Publications ...... v Fields of Study ...... vi List of Figures ...... xiii Chapter 1: Introduction ...... 1 Caregivers of adults with DD ...... 3 The Current Study ...... 41 Primary hypotheses...... 41 Secondary hypotheses...... 42 Chapter 2: Literature Review ...... 9 Psychological Burnout ...... 9 Theories of burnout...... 10 Burnout in North America...... 13 A Cognitive Framework for Conceptualizing the Impact of Adult Aggression on Caregiver Outcomes ...... 15 Caregiver attributions of challenging behavior...... 17 Caregiver stress reactions to aggression...... 19 Resilience...... 22 Coping Styles...... 25 External Predictors of the Effect of Adult Aggression on Caregivers ...... 28 Adult physical health...... 29 Adult mental health...... 30 Caregiver workplace characteristics...... 34 Caregiver Demographic Predictors...... 38 Chapter 3: Methods ...... 43

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Participants ...... 43 Measures ...... 44 Adult with DD questionnaires...... 45 Participant Questionnaires...... 47 Procedure ...... 53 Analysis Plan ...... 56 Chapter 4: Results ...... 59 Retention ...... 59 Participant demographics ...... 61 Adult with DD demographics ...... 65 Caregiver burnout ...... 66 Caregivers’ burnout comparisons to established norms...... 69 Caregiver resilience ...... 69 Hypothesis 1: Aggression severity was associated with higher burnout compared to measure norms and to low resilience scores in turned over caregivers...... 71 Group comparisons...... 71 Correlation analyses...... 72 Hypothesis 2: Resilience mediated the relationship between physical health needs in adults demonstrating aggression and caregiver burnout...... 73 Correlation analyses...... 75 Mediation analyses...... 78 Hypothesis 3. Caregiver resilience mediated the positive relationship between mental health needs in adults demonstrating aggression and caregiver burnout...... 80 Correlation analyses...... 82 Mediation analyses...... 84 Hypothesis 4: Caregiver retention was predicted by lower levels of mental and physical health concerns and higher levels of proactive coping, mindfulness, resilience, and social support. .. 84 Correlation analyses...... 85 Hypothesized predictor model of retention...... 87 Adult with DD predictors of retention...... 88 Work environment predictors of retention...... 89 Exposure predictors of retention...... 90 Coping predictors of retention...... 91

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Hypothesis 5. Higher burnout was associated with frequency of aggression being intrinsically attributed...... 92 Correlation analyses...... 94 Regression analyses...... 96 Hypothesis 6. Proactive coping mediated a positive relationship between aggression severity and burnout in retained caregivers...... 98 Hypothesis 7. Mindfulness mediated a positive relationship between aggression severity and burnout in retained caregivers...... 99 Hypothesis 8. Social support moderated a weaker relationship between aggression severity and burnout in retained caregivers...... 100 Chapter 5: Discussion ...... 103 Caregiver retention...... 103 Burnout and resilience...... 105 Predictors of burnout and the mediating role of resilience...... 105 Adult with DD physical health...... 108 Aggression attributions...... 109 Coping resources...... 110 Predictors of retention...... 111 Main Results Summary ...... 113 Implications ...... 114 Strengths ...... 115 Limitations and Future Directions ...... 116 Conclusions ...... 117 References ...... 119 Appendix A. Recruitment Flyer ...... 142 Appendix B. Measures ...... 143 Time 1 Current Job Status ...... 143 Time 2 Current Job Status ...... 145 Demographic Questionnaire ...... 147 Brief COPE (modified for use with IDD staff) ...... 149 Kentucky Inventory of Mindfulness Skills - Short Form ...... 151 MBI – Human Services Survey ...... 153 Areas of Worklife Survey ...... 155

Brief Resilience Scale ...... 157 Adult with Developmental Disabilities Demographics Questionnaire ...... 158 Adult Scale of Hostility and Aggression, Reactive/Proactive (A-SHARP) ...... 159 Physical Health Questionnaire ...... 162

List of Tables

Table 1. Measures administered at Times 1 and 2 ...... 56

Table 2. Caregiver reported reasons for no longer working with their aggressive adult at

Time 2 ...... 60

Table 3. Factors indicated as helping caregiver retention...... 61

Table 4. Participants’ work life characteristics across job status outcome groups ...... 64

Table 5. Demographics of aggressive adults with DD across job status groups ...... 66

Table 6. Frequencies of caregivers scoring in the low, moderate, and high range of burnout subscales on the Maslach Burnout Inventory ...... 68

Table 7. Comparisons of job status groups’ burnout scores ...... 69

Table 8. A-SHARP subscale comparisons between the Stopped and Retained groups and across time for the Retained group ...... 72

Table 9. Caregiver groups’ ratings of adults with DD’s physical health needs ...... 75

Table 10 Spearman’s BCa correlations between adult with DD physical health, aggression, caregiver resilience, and caregiver burnout ...... 77

Table 11. Spearman’s BCa correlations between adult with DD mental health, adult with

DD aggression, caregiver resilience, and caregiver burnout ...... 83

Table 12. Point-biserial correlations of retention with adult variables: aggression, mental health, and physical health, and caregiver variables: burnout, resilience, mindfulness, coping, and social support...... 86

Table 13. Regression results predicting caregiver retention from adult with DD aggression and physical health (row 1) and aggression and mental health (row 2)...... 88

Table 14. Regression coefficients for a binary logistic model of caregiver retention, entering aggression and work life variables as predictors ...... 90

Table 15. Regression coefficients for a binary logistic regression model predicting caregiver retention with adult with DD aggression and measures of caregiver exposure to the adult ...... 91

Table 16. Regression coefficients for a binary logistic regression model of caregiver retention predicted by adult with DD aggression and caregiver coping styles ...... 92

Table 17. Full sample and subgroup descriptive information for A-SHARP provocation subscale scores ...... 94

Table 18. Point biserial correlations (row 1) between caregiver retention and correlations between A-SHARP severity and provocation subscale scores (rows 2 through 11) ...... 95

Table 19. Regression coefficients for A-SHARP aggression severity and provocation scores in a model predicting caregiver retention ...... 96

Table 20. Regression coefficients for variables included in the final predictive model of caregiver retention ...... 97

Table 21. Spearman’s BCa bootstrapped correlations between social support, burnout, and aggression subscales...... 101

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List of Figures

Figure 1. Hypothesized sequences of cognitive responses to aggression in caregivers of adults with DD and the role of mediating variables ...... 17

Figure 2. A conceptual diagram of the hypothesized moderated mediation relationship between adult with DD aggression, adult with DD physical health, caregiver resilience, and caregiver burnout ...... 78

Figure 3. A conceptual diagram of the hypothesized moderated mediation relationship between adult aggression, adult mental health, caregiver resilience, and caregiver burnout...... 80

Chapter 1: Introduction

Adults with developmental disabilities (DD), a set of disorders characterized by delays in the areas of learning, language, motor skills, self-care, and independence with an onset at birth and persist across the lifespan, are prone to displaying higher rates of aggression than the general population. Aggression is defined as any physical or verbal behavior with an intensity, frequency, and duration that threatens the physical or psychological safety and quality of life of the person engaging in the behavior or people in his or her environment (Royal College of Psychiatrists, 2001; Wanless & Jahoda,

2002). Quality of life can be negatively affected by aggression as procedures used to respond to aggression are often aversive, restrictive, or exclusionary (Royal College of

Psychiatrists, 2001; Wanless & Jahoda, 2002). Population-based studies found the prevalence of aggression in adults with DD to vary from 7 to 20% (Bowring, Totsika,

Hastings, Toogood, & Griffith, 2017; Cooper et al., 2009; Emerson et al., 2001). These inconsistencies appear to be due to differences across studies in definitions of aggression, sampling frames and outcome measures used (Benson & Brooks, 2008; McClintock,

Hall, & Oliver, 2003). One study of the prevalence of aggression in a large epidemiological sample in adults with intellectual disability (ID) in Scotland found a two- year incidence of 1.8% and a two-year remission rate of 27.7%, suggesting that aggression can be short-term, provided that the aggressor receives appropriate supports

(Cooper et al., 2009). Common forms of aggressive behavior include physical aggression, verbal aggression, and property destruction. Other profiles that were identified through cluster analysis in a large cross-sectional, community-based sample were: acting-out

(mild verbal, physical, and property-oriented aggression), aggressive (severe verbal aggression and property destruction, mild self-oriented, sexual, and physical aggression), violent (severe forms of all aggression), sexual (sexual aggression only), and self- mutilating (severe self-injury only) (Crocker, Mercier, Allaire, & Roy, 2007). The focus of this study will be on adults with DD who engage in aggression directed towards others, specifically physical and verbal aggression.

Several variables have been linked with higher rates of aggression. Aggression has been associated with having lower adaptive skills, urinary incontinence (Cooper et al., 2009; Emerson et al., 2001), poorer social skills, poorer coping skills, attention deficit hyperactivity disorder or greater impulsivity (Cooper et al., 2009; Drieschner et al., 2013) and not having Down syndrome (Cooper et al., 2009; Tyrer et al., 2006). Greater violence has been positively associated with living in group homes and negatively associated with living with one’s family, attending community-based jobs, activities, and attending school (Cooper et al., 2009; Crocker et al., 2007). Inconsistent results have been found regarding whether aggression is displayed more in males (Emerson et al., 2001; Tyrer et al., 2006) or females (Cooper et al., 2009; Drieschner et al., 2013; Embregts, Didden,

Huitink, & Schreuder, 2009). Adults with more severe DD have been shown to display higher aggression in cross-sectional studies of large community-samples of adults with moderate to profound DD (Tyrer et al., 2006) and mild to moderate ID (Crocker et al.,

2007). Age also appears to play a key role with rates of aggression, as younger adults

have been identified as showing higher rates (Tenneij & Koot, 2008; Tyrer et al., 2006).

One literature review and meta-synthesis (Davies & Oliver, 2013) suggested that in adults, the prevalence of aggression increased until mid-adulthood and decreased after that, potentially showing a curvilinear relationship with age.

Caregivers of adults with DD

When not living with their families, adults with DD typically live in a residential facility, group home, or inpatient hospital under the care of direct support providers.

Direct support providers (referred to as “caregivers” going forward) are paid to provide routine services focusing on health care, hygiene, employment, transportation, habilitation, recreation, housekeeping, home management, and medication management

(US Department of Health and Human Services, 2006). The supports paradigm in DD suggests that human functioning reflects the degree to which the person’s environment of supports maximizes the individual’s capacity to live successfully within his or her community and achieve fulfillment in life (Thompson et al., 2009). For adults with DD who receive services in the home or community, such as at day programs or job sites, caregivers not only play an integral role in facilitating an adult’s capacity, but often also take on the role of the individual’s family and friends, particularly if adults have limited contact with family members.

Because of the vital role caregivers play in the lives of adults with DD, they also play a relevant role in the occurrence and maintenance of aggressive behavior.

Contextual events related to staff behavior, specifically aversive social interactions and task-related events, have been shown to be most frequent antecedents, or triggers, of

aggressive behavior in adults with mild to borderline ID in a residential facility.

Examples of these included arguments, being given instructions too quickly, tasks that were too difficult, and having too much or too little attention. Least associated with aggressive behaviors were uncomfortable environment, medication, illness, and physiological states (Embregts et al., 2009). In an inpatient sample, the most frequent antecedent was the denial of a request (Tenneij & Koot, 2008).

Having professional caregiving support has been rated as the most important quality indicator for individuals with DD (Devereux, Hastings, & Noone, 2009; Larson,

Hewitt, Lakin, & Felce, 2004), although these services are often worst with regards to overall quality of supports received (Larson et al., 2004), which in turn directly affects quality of life (Buntinx & Schalock, 2010), and number of caregivers available. In 2006, approximately 1,043,000 adults with DD were living with family members, 1,974,616 were living independently in their own homes, and 412,000 were living in community- based, residential programs across the United States (US Department of Health and

Human Services, 2006). As of 2003, approximately 874,095 full-time caregivers were required to meet the need for care services in individuals’ homes and in the community; however, only approximately 750,891 were available, resulting in a 14% unmet need (US

Department of Health and Human Services, 2006). Although the majority lived with family or independently, these individuals often still required professional supports above and beyond what could be provided by their families. For example, approximately half of individuals living with families required supervision every two hours or more, translating into a need of approximately 600,000 full time caregivers. In Ohio, approximately 1,032

adults were anticipated to lose their primary caregiver each year and require alternative caregiving supports (Martin, 2015).

One important contributor to the overall low quality of supports received and number of caregivers available is turnover, the process of caregivers leaving their direct support employment position either voluntarily or involuntarily. The direct support field consistently experiences a high rate of job vacancies and turnover (Ejaz, Bukach,

Dawson, Gitter, & Judge, 2013; US Department of Health and Human Services, 2006).

Studies examining turnover in residential, vocational, and in-home caregivers showed an annual turnover rate of 48.1 to 53.6% (M = 50%) between 1998 and 2003 (Ejaz et al.,

2013; US Department of Health and Human Services, 2006), between 50% and 75% in non-state community service agencies, and between 20 and 25% in state-operated organizations (Larson et al., 2004). In Ohio, a recent turnover study of long-term care developmental disabilities agencies found a 34% turnover rate (Ejaz, Bukach, Dawson,

Gitter, & Judge, 2015); a related study indicated that the most common cause was employees leaving voluntarily (76%) (Ejaz et al., 2013). This suggested that caregiver departure from their job may to some degree be due to job dissatisfaction or an inability to continue working in the same environment. Turnover in the DD field was also found to be higher than the turnover in the nursing, mental health, and home health fields (Ejaz et al., 2013). Finding an average 14% rate of vacant positions at any one time, Ejaz and colleagues (2013) calculated that approximately 19,000 additional full-time caregivers would need to be hired each year to match the growing prevalence of adults with DD requiring services in Ohio by 2020 alone, then this number would need to be further multiplied 12.5 times to account for the current turnover rate (Ejaz et al., 2013). To

account for an estimated national 52% turnover rate in another study (Hewitt & Larson,

2007), the costs associated with recruiting, hiring, and training replacement caregivers was estimated to be $784 million dollars annually.

Problem behavior such as aggression is most frequently reported by caregivers as a work stressor and has been shown to have a negative effect on caregivers’ coping

(Hastings, 2002; Devereux, Hastings, Noone, Firth, & Totsika, 2009b; Hensel et al.,

2012, 2014). Sustained stress and poor coping patterns may predict burnout, which has been strongly associated with turnover (McKillop & Minnes, 2011). Burnout is defined as a state of physical, emotional and mental exhaustion resulting from prolonged experience of emotionally overwhelming or uncontrollable stressors (Aitken & Schloss,

1994; Innstrand, Espnes, & Mykletun, 2002). Caregiver burnout and turnover can negatively impact quality of behavioral interventions delivered to adults with DD and problem behavior. Consistency in environment and demands are required to effectively manage and reduce rates of problem behavior, yet with high rates of change in caregivers, this task becomes extremely challenging. Additionally, the repeated loss of caregivers may have an emotional strain on the adult with DD, impacting the quality of the adults’ care, social support, and overall quality of life.

Several studies have made progress in exploring the relationship between cognition, coping, burnout, and emotional reactions in caregivers, and have identified multiple predictors of burnout and turnover, rather than a single variable (Hastings &

Brown, 2002; Mills & Rose, 2011; Rose & Rose, 2005). They have also identified the need to look at relationships between positive psychological variables, such as coping and resilience, and how caregivers develop resilience when faced with adversity at work

(Devereux et al., 2009; Hastings, 2010; Noone & Hastings, 2009). Additionally, there is a need for longitudinal data to support causal inferences on these processes (Howard, Rose,

& Levenson, 2009; Skirrow & Hatton, 2007), as findings thus far have been limited by cross-sectional designs, small sample sizes, low power, and skewed data (Devereux et al.,

2009b; Hastings, 2002; Mills & Rose, 2011).

Factors that have received minimal attention are the roles that additional supports of adults with DD needs play in predicting positive versus negative outcomes in caregivers. Specifically, the role that the mental and physical health of aggressive adults with DD plays in predicting caregiver outcomes is unknown. Lastly, further research on factors associated with retention and positive coping strategies in caregivers is needed within the context of the American healthcare system. Most published studies on the topic of caregiver outcomes when working with aggressive adults with DD has been conducted on samples of caregivers who work under universal health care (e.g.,

Australia, Canada, the Netherlands, Spain, the United Kingdom), which limits the opportunity to generalize these results to the state of coping, resilience, and retention in the United States. Working in the United States alone may arguably increase the risk for burnout and turnover. The United States does not guarantee paid vacation or holidays for employees (U.S. Department of Labor Wage and Hour Division, 2011). It is the only industrialized nation that does not mandate these benefits for employees; in fact, a report by the Center of Economic and Policy Research found that one in four employees do not have paid vacation nor paid holidays. Only 49% of American workers earning in the lowest 25% received paid vacation, which contrasts with 90% of workers earning in the top 25% who receive paid vacation (Ray, Sanes, & Schmitt, 2013). Caregivers of adults

with DD have been found to receive fewer benefits than caregivers of geriatric, home health, or mental health populations (Gitter, Ejaz, Bukach, Dawson, & Judge, 2013). It is important to explore the impact of aggression from adults with DD on caregivers in an

American sample, especially given the unique healthcare system and lack of worker benefits.

Chapter 2: Literature Review

Psychological Burnout

When caregivers experience frequent or prolonged stressors with which they find it difficult to cope, a caregiver is at higher risk of elevated stress, or distress. As mentioned, one construct that has been proposed to represent elevated distress that may be indicative of later mental health concerns is burnout (Hatton et al., 1999). Burnout is defined as a state of physical, emotional and mental exhaustion resulting from the prolonged experience of emotionally overwhelming or uncontrollable stressors (Aitken &

Schloss, 1994; Innstrand et al., 2002). One conceptualization of burnout that is widely used is comprised of three core experiences: high emotional exhaustion, high depersonalization, and low personal accomplishment (Maslach, Jackson, & Leiter, 1997).

Emotional exhaustion is directly linked with high and chronic work stress, which in turn has been related to depression (LaMontagne, Keegel, Vallance, Ostry, & Wolfe, 2008).

Depersonalization is the act of separating oneself emotionally from one’s environment and the stressors it presents. A low sense of personal accomplishment is a likely result of consistently receiving minimal positive reinforcement at work, which may in turn lower motivation to respond adaptively to stressors and result in fewer opportunities for positive self-evaluation. Burnout has been most frequently measured using the Maslach Burnout

Inventory, which is comprised of three subscales representing these three constructs

(Maslach et al., 1997). The inverse of burnout, “work engagement” occurs when

caregivers report high personal accomplishment, low emotional exhaustion, and low depersonalization (Maslach et al., 1997).

Burnout has been associated with negative social interactions between caregivers and adults with DD, ineffective coping strategies, high rates of absenteeism, and job turnover. Problem behavior has been temporally associated with higher burnout in paid caregivers of adults with DD, though this relationship has been found to be indirect and impacted by mediating factors (Chung & Harding, 2009; Hastings, 2002; Hensel et al.,

2012; Howard, Rose, & Levenson, 2009; Mills & Rose, 2011, 2011; Mutkins et al., 2011;

Rose, Mills, Silva, & Thompson, 2013).

Theories of burnout. Multiple theories explaining the causes of job burnout have been proposed. Innstrand and colleagues (2002) and Schaufeli and Buunk (2003) grouped these theories into three approaches: a) an individual approach: a disconnect between the worker’s expectations, psychological characteristics, and the working environment contributes to or causes burnout (Chung & Harding, 2009; Devereux et al., 2009b) ; b) an interpersonal approach: burnout stems from a demanding relationship between the caregiver and care recipient (Chung & Harding, 2009; Dennis & Leach, 2007; Mitchell &

Hastings, 2001; Rose, Horne, Rose, & Hastings, 2004); and c) an organizational approach: the level of work demands, organizational support, and organizational values contribute to burnout (Blumenthal et al., 1998; Hatton et al., 1997; Aitken & Schloss,

1994; Dyer & Quine, 1998; Gil-Monte & Peiró, 1998; Prosser et al., 1997; Chung &

Corbett, 1998; Chung et al., 1995; Lin et al., 2009).

Vassos and Nankervis (2012) proposed that a demographic approach (e.g., gender, education level, number of work hours, employer agency type) to understanding

burnout development has been supported by the literature (Mitchell & Hastings, 2001;

Aitken & Schloss, 1994; Blumenthal et al., 1998; Chung & Corbett, 1998; Lin et al.,

2009; Chung et al., 1995). To evaluate the predictive strength of each approach in contributing to burnout, they conducted a cross-sectional study on paid caregivers in

Australia. Measures used to evaluate predictors were the Maslach Burnout Inventory –

Human Services Survey (Maslach et al., 1997) and the Staff Stressors Questionnaire

(Hatton et al., 1999) developed to measure stressor sources for individuals paid to work with people with disabilities. Challenging behavior (an interpersonal factor) significantly predicted all three components of burnout (emotional exhaustion, depersonalization, and personal accomplishment). Concerning demographic variables, work hours significantly predicted emotional exhaustion and depersonalization, and caregiver gender also significantly predicted depersonalization. Regarding organizational variables, role ambiguity predicted all components of burnout, low job status predicted emotional exhaustion and depersonalization, and role conflict also predicted emotional exhaustion.

The individual factor of home-work conflict predicted emotional exhaustion and depersonalization; peer support and workload predicted emotional exhaustion, supervisor support predicted depersonalization, and job feedback predicted personal accomplishment. Though highly informative in identifying individual predictors of burnout in this population, findings from this study were limited by a moderate sample size (n = 108), which Vassos and Nankervis (2012) claimed was too small to analyze between-group differences. Additionally, authors acknowledged that it would have been useful to evaluate mediators of burnout as recommended by Devereux and colleagues

(2009b) using non-parametric bootstrapping mediation methods (Preacher & Hayes,

2004), though it was not the purpose of their paper. Authors therefore recommended that future research evaluate burnout models with between-group and mediation analyses, causal relationships between predictors and burnout by conducting longitudinal studies, and the role that coping styles play in influencing these models.

Smyth, Healy, and Lydon (2015) investigated the role that exposure to aggressive or destructive behaviors played in impacting stress, burnout, and job commitment in paid caregivers in the UK. The role that age, experience in the field, experience with problem behavior and perceived stress played in impacting burnout was also examined. Lastly, rates of burnout were compared to other UK (Mitchell & Hastings, 2001) and Canadian

(Hensel et al., 2012) samples to determine whether their results were generalizable.

Aggressive and disruptive behaviors were measured using the Aggressive/Destructive

Behavior subscale of the Behavior Problems Inventory (Rojahn, Matson, Lott, Esbensen,

& Smalls, 2001). Comparing their sample means to those found by Mitchell and Hastings

(2001) and Hensel and colleagues (2012), the authors showed that their sample scored significantly lower on the emotional exhaustion and depersonalization subscales, and significantly higher on the personal accomplishment subscales, though these differences were no longer significant after applying Bonferroni corrections when making comparisons to the Hensel and colleagues (2012) sample. Authors found that age was negatively associated with depersonalization. Years of experience were not associated with burnout. Perceived stress was positively correlated with frequency and severity of aggression. Severity of aggression was also associated with emotional exhaustion and job commitment. Depersonalization was negatively associated with job commitment, while personal accomplishment was positively associated with job commitment. Multiple

hierarchical regressions examining predictors of the three components of burnout found the following variables to predict each: emotional exhaustion: lower age, more work experience with DD, more severe aggression/disruption, and perceived stress, with perceived stress being the strongest predictor; depersonalization: younger age, greater frequency of aggression/disruption, more severe aggression/disruption, and higher stress; personal accomplishment: feelings of job obligation.

Burnout in North America. The literature produced in North America on burnout in caregivers of adults with DD has been scarce. Skirrow and Hatton (2007) conducted a meta-analysis of the DD burnout literature published up to 2004, finding that only three studies were conducted in the United States (Caton, Grossnickle, Cope, Long,

& Mitchell, 1988; Edwards & Miltenberger, 1991; Lawson & O’Brien, 1994). Other studies were primarily published from the United Kingdom, Australia, Canada, Holland, and Spain. Skirrow and Hatton (2007) found that caregivers experienced somewhat lower levels of burnout than the normative sample of the Maslach Burnout Inventory (Maslach et al., 1997), and that overall, there was a decreasing trend in burnout found by studies over time. This was likely due to increased research and clinical attention being paid to training of caregivers in managing challenging behavior and stress (Cox, Dube, &

Temple, 2015), which in turn has resulted in increased interventions being developed to help prevent burnout (Innstrand, Espnes, & Mykletun, 2004; McConachie, McKenzie,

Morris, & Walley, 2014; Singh, Lancioni, Karazsia, Chan, & Winton, 2016; van

Oorsouw, Embregts, Bosman, & Jahoda, 2014).

Given that the American healthcare field operates very differently from that of countries with universal health care and is notorious for providing poorer overall benefits

to its employees (Ray et al., 2013), it is necessary to look at predictors of burnout and related outcomes in paid caregivers of aggressive adults with developmental disabilities.

In North America, investigations of the relationship between aggression and burnout have mainly been conducted among hospital and residential program staff in Ontario (Hensel et al., 2012; Hensel, Hensel, & Dewa, 2015; Hensel et al., 2014) and within the context of caregiver mindfulness training as an intervention for problem behavior (Singh et al.,

2006, 2016; Singh, Wahler, Adkins, & Myers, 2003). In one study (Hensel et al., 2012), a survey on the impact of adult aggression was administered to 926 caregivers working in

Ontario. Of the one quarter of the sample that experienced daily aggression, most caregivers coped and self-reported low burnout. In fact, 60% of surveyed caregivers reported moderate and 30% reported large benefits from their jobs. This sample was likely biased as it was weighted toward caregivers with longer tenure; 72.4% of participants had worked in the field for at least 6 years and only 7.2% reported working in the field for less than 2 years. Frequency of exposure to aggression, perceived severity and standardized measures of aggression severity were positively correlated with emotional exhaustion and depersonalization. Severity of aggression was also weakly but positive associated with personal accomplishment. Daily aggression was more frequently experienced in residential and respite settings, and less frequently in supported independent living, supported employment, and job coaching settings. Residential, respite, day program, and independent supported living caregivers reported highest burnout, with day program and independent supported living staff reporting the highest

10% of burnout scores. Although individuals in these settings were less likely to display aggression, they may have engaged in more complex forms of aggression such as

interpersonal manipulation and verbal aggression, with which caregivers may have found it more difficult to cope (Hensel et al., 2012). In a follow-up study investigating mediators between work setting, specifically a hospital versus residential setting, and burnout (Hensel et al., 2014), the severity of aggression was found to strongly mediate burnout in hospital staff but not residential staff. Perception of self-efficacy by staff across both settings did not have an impact on burnout. Further research is needed on factors associated with burnout of caregivers working within the context of the American healthcare system.

A Cognitive Framework for Conceptualizing the Impact of Adult Aggression on

Caregiver Outcomes

Aggression is thought to cause burnout in caregivers, and subsequent turnover, through a series of mediating cognitive processes and moderating environmental influences. Mediation is a causal model by which a predictor variable (X) affects a dependent variable (Y) through the process of the mediating variable (M). Mediators can be described as traits, or permanently existing variables that explain or account for the relationship between X and Y. Statistically, a relationship is considered mediated when the strength of the relationship between X and Y is decreased when M is included in the model, and both X and M directly affect Y. In contrast, a moderator is a state variable that does not explain the relationship, but rather influences the amount of effect that the X has on Y. Moderators are not present before the proposed cause-effect relationship occurs

(Baron & Kenny, 1986).

Few studies on staff stress (e.g., Mealer, Jones, & Moss, 2012; Mills & Rose,

2011) have included mediation and moderation analyses to identify the role that cognitive processes such as coping and resilience play in the relationship between aggression and caregiver outcomes, specifically, caregiver burnout and his or her decision to stay

(retention) versus leave a caregiving role (turnover). In alignment with the Transactional

Stress model (Lazarus & Folkman, 1984), the following cognitive processes are hypothesized to occur following the experience of an aggressive act from an adult with

DD towards his or her caregiver: a) the caregiver attributes whether the aggressive behavior was intrinsically or extrinsically motivated, b) the caregiver appraises whether the event is a stressor, c) the caregiver activates a coping style in response to aggression, and d) the caregiver displays varying levels of resilience in response to the event. This repeated process over time may result in the experience of the outcome variables of interest: burnout and the choice to stay versus leave the caregiving role. This relationship is illustrated in Figure 1. The following sections will review existing literature on these hypothesized mediators, demonstrate how they are related to burnout and job retention thus far, and indicate areas for further research.

Predictor Adult physical or verbal aggression

Mediator Caregiver attributions of whether aggression is reactive or proactive

Mediator Caregiver stress appraisal

Mediator Caregiver Resilience

Mediator Activation of coping mechanisms

Short-term outcome Caregiver burnout

Long-term outcome Caregiver retention

Figure 1. Hypothesized sequences of cognitive responses to aggression in caregivers of adults with DD and the role of mediating variables

Caregiver attributions of challenging behavior. The function and type of aggression can affect attributions and subsequent emotional reactions by caregivers, such as stress, anxiety, and burnout, which in turn affects treatment of the individual with DD

(Dilworth, Phillips, & Rose, 2011; Rose & Rose, 2005). When the cause of aggression is

attributed to be intrinsic to the individual, caregivers are more likely to respond negatively, but if there is an extrinsic attribution at play, caregivers are more likely to respond with sympathy and helping behavior (Mills & Rose, 2011). For example, if caregivers make the intrinsic attribution that the individual with DD is hitting others because he or she is mean or selfish, the caregiver is more likely to react impatiently, yell, or ignore him or her next time the person needs help. If caregivers make extrinsic attributions regarding the cause of hitting, such as it occurred due to the person not feeling well, emotional trauma due to a history of being abused, or simply having a bad day, caregivers are more likely to respond with understanding and sympathy. This is significant, as aggression is more likely to be intrinsically attributed by caregivers (Bailey et al., 2006), increasing the likelihood of negative reactions to aggression.

Other attributions regarding aggression that can be made include whether it is predictable versus unpredictable, globally demonstrated rather than context-specific, chronic versus temporary, and controllable versus uncontrollable (Bromley & Emerson,

1995; Mills & Rose, 2011; Rose & Rose, 2005). Greater stress has been associated with adult behavior when caregivers consider it to be unpredictable (Bromley and Emerson,

1995) and controllable (Stanley & Standen, 2000). Externalizing behavior is more often perceived as controllable, and internalizing behavior, such as self-injury, is more likely to be perceived as uncontrollable. Greater helping behavior has been linked with low controllability (Willner & Smith, 2008), and breakdown in the quality of placements for adults with DD has been linked to the staff perception that challenging behavior is controllable (Phillips & Rose, 2010). One study examining the relationship between demographic variables and choices to respond with safety-focused versus punitive

behaviors to aggression displayed by adults with DD (Kleinberg & Scior, 2014) found that attributions of control were associated with responding using safety-focused behaviors by female caregivers. Caregivers self-reported being more likely to respond with punitive behaviors towards aggressive males than with aggressive females, though adult gender did not have an impact on likelihood of using safety-focused responses

(Kleinberg & Scior, 2014).

Behaviors that have been identified as chronic in nature were associated with more negative emotions in caregivers, while behaviors that were sporadic or episodic were associated with less negative emotions (Mills & Rose, 2011). This indicated that the chronicity of behavior may contribute to greater stress and burnout. Self-injurious behavior, for example, was more likely to be thought of by caregivers as stable, uncontrollable, and unchangeable, which may feed into caregivers’ feelings of hopelessness for change and in turn burnout (Bailey et al., 2006).

Caregiver stress reactions to aggression. There is little consensus on how to conceptualize and measure stress in caregivers working in the DD field (Skirrow &

Hatton, 2007) and several theories of work stress have been posited, although these theories have received limited research attention (Devereux et al., 2009). The DD field is generally behind the general work stress field in understanding the work-related processes that lead to stress, burnout, and turnover justifying the need of further exploration in this area.

Stressors encountered by caregivers can be understood using a micro versus macro-level perspective. A micro-level perspective identifies stress as stemming primarily from the care recipient and the emotional responses caregivers have towards the

care recipient causing work stress (Hastings, 2002; Mossman, Hastings, & Brown, 2002).

The macro-level perspective of stress suggests that stressors stem from factors beyond the care recipient, specifically work demands, support received at work, and constraints on available resources (Rose, 1995, 1999). Work stressors often reported by caregivers include challenging behavior (Skirrow & Hatton, 2007), organizational problems such as inadequate staffing (White, Edwards, & Townsend-White, 2006), and conflict with colleagues (Alexander & Hegarty, 2000). Micro-level supports can include methods for building cognitive-behavioral strategies for coping with work stress, while macro-level supports can emphasize problem-solving skills to address organizational-level work issues (Devereux et al., 2009), such as how to manage limited resources or difficulties communicating with coworkers and managers. The suggestion has been made that a pragmatic approach to managing work stress would focus on the relationship between caregivers and care recipients, as these relationships are necessary to promote overall quality of life, but can also be a major source of work stress when interactions are frequently negative (Devereux et al., 2009a).

Long-term exposure to work stressors can result in chronic stress, which, when it cannot be controlled, is positively associated with distress (Devereux et al., 2009).

Distress is an extreme form of stress often associated with anxiety that impairs functioning in daily life or work (Lazarus, 1995). Caregivers of adults with DD who exhibited regular aggression have been shown to experience increased emotional exhaustion (Hensel et al., 2014), which can lead to long-term mental health concerns such as chronic stress, depression, and anxiety (Chung & Harding, 2009). Of caregivers working in an inpatient hospital, outwardly directed aggression, compared to self-directed

aggression, was most associated with feelings of threat by the victim, but was also least likely to receive consequences (Tenneij & Koot, 2008), suggesting that when outward aggression is displayed by adults with DD, it has the potential to have a long-term impact on caregivers.

Greater fear and anxiety experienced by caregivers has been linked to a greater frequency of problem behavior (Lambrechts, Kuppens, & Maes, 2009), suggesting a transactional relationship between caregiver stress reactions and adult problem behavior.

Caregivers who experience chronic problem behavior, specifically aggression, may develop over-arousal responses like those experienced by people with post-traumatic stress disorder. Raczka (2005) found that caregivers reported reliving experiences and developing headaches in anticipation of the behavior when asked about the consequences of long-term exposure to challenging behavior. High stress and negative perspectives towards a caregiving position may increase the likelihood of using physically or emotionally abusive practices towards adults, which is a prevalent issue in the DD field.

Adults with developmental disabilities are at greater risk of experiencing abuse than adults without developmental disabilities (Harrell, 2012; Hughes et al., 2012; Hughes,

Lund, Gabrielli, Powers, & Curry, 2011).

Negative emotional reactions such as stress responses have been found to mediate the relationship between adult aggression and caregiver burnout (Hastings, 2002; Mills &

Rose, 2011; Mutkins et al., 2011; Rose et al., 2004; Rose et al., 2013). Mills and Rose

(2011) investigated whether staff perceptions of challenging behaviors, causal attributions, and general staff emotions mediated the relationship between problem behavior and burnout. While they could confirm that negative emotion mediated the

problem behavior – burnout relationship, they were unable to confirm that other factors, such as caregiver qualifications and length of time working in the DD field, were associated with or mediated this relationship (Chung & Harding, 2009; Mills & Rose,

2011). Negative emotions, specifically fear of assault, has been found to mediate this relationship in staff working in residential programs (Mills & Rose, 2011; Rose, Horne,

Rose, & Hastings, 2004; Rose et al., 2013). In contrast, Mutkins, Brown, and

Thorsteinsson (2011) predicted that staff emotional reactions, specifically psychological stress, anxiety, and depression as measured by the DASS-21 (Lovibond & Lovibond,

1995) would mediate greater burnout stemming from problem behavior, however failed to find evidence of such a relationship, and did not find elevated burnout levels compared to the normative sample of the Maslach Burnout Inventory (Maslach et al., 1997).

Resilience. While there has been a significant amount of research conducted on the negative impact of caring for a person with DD, less has been performed on positive impacts. One variable associated with positive outcomes for caregivers is resilience, defined as the ability to adapt to and persevere through adverse experiences by actively balancing risk and protective factors (Agnes, 2005; Luthar, Cicchetti, & Becker, 2000;

Smith et al., 2008). The related construct of grit, defined as the tendency to pursue long- term goals with sustained passion and effort over time (Duckworth, Peterson, Matthews,

& Kelly, 2007), predicted retention across several contexts: candidates in a grueling

Special Forces boot camp, sales employees in competitive marketing jobs, high school students graduating from Chicago Public Schools, and couples in long-term marriages.

Grit was shown to predict retention in these contexts above and beyond factors such as

personality, intelligence, physical ability, and job tenure history (Eskreis-Winkler,

Duckworth, Shulman, & Beal, 2014).

Resilience in the developmental disabilities field has been mainly researched from the perspective of parents, specifically the impact of disability on parent resilience. For example, investigating the impact of disability of adolescents with DD on their parents’ quality of life, Migerode, Maes, Buysse, and Brondeel (2012) found resilience and quantity of social support to fully mediate this relationship, while resilience was also found to partially mediate the impact of adolescents’ adaptive skills on their parents’ quality of life. Another study (Ruiz-Robledillo, De Andrés-García, Pérez-Blasco,

González-Bono, & Moya-Albiol, 2014) found that higher resilience in parents of people with ASD was positively associated with their own perceived health and lower cortisol levels. Social support was also found to mediate the relationship between caregiver resilience and caregiver perceived health. A review of the literature on parents of children with ID compared to parents of typically developing children found that coping style, social support, and optimism influenced resilience in parents of children with ID (Peer &

Hillman, 2014).

Existing research on resilience in paid caregivers of individuals with DD (Bekhet,

Johnson, & Zauszniewski, 2012; Harvey & Quinn, 2012) suggested that resilience may help mitigate the effects of aggression on stress or burnout in caregivers, to in turn facilitate greater retention. One study of caregivers experiencing challenging behavior in forensic ID services (n = 85) versus community-based ID services (n = 51) in Norway found caregivers in the community-based programs reporting significantly more challenging behaviors from adults with DD, which resulted in higher traumatic stress and

burnout. Despite this, community-based caregivers still experienced significantly higher compassion, more positive and negative work-related emotions, and slightly, though not significantly, higher resilience (Søndenaa, Whittington, Lauvrud, & Nonstad, 2015).

Resilience was measured in this sample using the Dispositional Resiliency Scale

(Bartone, 2007). Authors suggested that resilience may partially explain higher compassion scores in community-based providers despite their experience of higher work-related stress and burnout. This study did not investigate mediating or moderating variables.

Another study (Bekhet et al., 2012) found that positive cognitions had a mediating but not moderating effect on the association between caregiver burden and resourcefulness in caregivers of individuals with ASD. In this study, resourcefulness was conceptualized as an indicator of resilience, specifically the process of using self-help and help-seeking behaviors in response to demanding situations. Another study (Ingham et al., 2013) evaluated a pilot workshop focused on building resilience in caregivers by targeting reductions in negative emotions and maladaptive cognitions in response to severely aggressive adults with DD. The intervention had moderate to large effects on negative emotional responses to challenging behavior but did not affect level of self- reported burnout. While this study was claimed to address resilience in caregivers, it did not include a direct measure of resilience as a construct. Further exploration of factors associated with resilience and positive outcomes in paid caregivers of adults with DD who experience high rates of work-related stressors is needed. As retention was not directly assessed in these studies, evaluating whether higher resilience in caregivers is

associated with long-term retention in caregiving roles would be informative for future caregiver interventions.

Coping Styles. Coping, from a cognitive-behavioral perspective, is the act of using cognitive and behavioral processes to successfully respond to demands that tax or surpass the individual’s perceived available coping resources. In line with the transactional model of stress and coping (Lazarus & Folkman, 1984), coping has been suggested to be either proactive or emotion-focused. Coping is considered proactive or problem-focused when the individual changes his or her behavior or the environment to decrease or eliminate threats to one’s resources. Avoidance-focused coping includes maladaptive efforts to reduce the stress or distress experienced by avoiding feelings of stress rather than directly addressing stressors themselves. Examples of emotional responses include denial, avoidance, or wishful thinking (Lazarus & Folkman, 1984).

Coping is an important variable in predicting caregiver outcomes when caring for an aggressive adult with DD. The transactional model of work stress has also been applied to the DD with regards to the effectiveness of cognitive-behavioral work stress interventions and to evaluate how cognitive-behavioral processes affect chosen coping styles. In a large cross-sectional community-based sample, 42% of caregivers (a mixed group of professional and family caregivers) experiencing physical aggression from adults with DD stated they were unable to cope, compared to only 10% of caregivers of adults who were not aggressive (Tyrer et al., 2006). Evidence has shown that emotion- focused coping, such as avoidance to reduce negative emotional responses, is associated with greater burnout and work stress (Hastings & Brown, 2002; Noone & Hastings,

2010). Other avoidance-based strategies, such as wishful thinking, have been associated

with greater work stress than problem-focused coping, and have played a meditational role between perceived work demands and emotional exhaustion burnout in caregivers

(Devereux et al. 2009b). Such avoidance based responses have also been shown to reinforce challenging behavior, or increase the likelihood that future challenging behavior will occur (Hastings, 2005). Evidence suggests that caregivers are more likely to experience reductions in work stress after participating in a cognitive-behavioral intervention teaching coping strategies over other strategies (Gardner, Rose, Mason,

Tyler, & Cushway, 2005). In this study, coping will be explored as a mediator variable because, in the face of chronic work stressors, coping is more likely to be exhibited as a trait rather than transitional state behavior (Devereux et al., 2009b) and it has been previously conceptualized as a mediating variable in the literature (Ingham, Riley, Nevin,

Evans, & Gair, 2013).

Mindfulness-based coping. Mindfulness-based coping strategies are based on the cognitive-behavioral theory of work stress, suggesting that problem-focused coping is necessary for caregivers to show healthy coping and resilience in the face of stressors, rather than avoidance behaviors. Negative thoughts and emotional reactions occur when the individual is unwilling to accept that a negative event is occurring. Mindfulness is a non-religious meditational approach that functions to eliminate the negative thoughts and emotional reactions that occur in response to stressful events. It focuses on acknowledging, rather than avoiding, stressful events, and on how to adapt one’s emotional and behavioral responses (Noone & Hastings, 2010). Most authors agree that mindfulness consists of two distinct factors: presence, which is the attentional focus to a momentary experience, and acceptance, which is a genuine, non-judgmental, open, and

accepting attitude towards a current experience (Bishop et al., 2004; Sauer et al., 2012).

Singh et al. (2006) provided training on behavior management followed by a mindfulness intervention to caregivers, finding that there were dramatic decreases in problem behavior and increased learning in care recipients when mindfulness-based strategies had been added to caregiver training. A mindfulness-based approach has proven beneficial beyond the experiences of the caregiver; it has been associated with a decreased need to use interventions for aggressive behavior (Singh et al., 2006), including medications (Singh et al., 2009) and physical restraint (Singh et al., 2006, 2009, 2016). Additionally, using mindfulness-based strategies have increased caregiver satisfaction (Singh et al., 2006), and happiness in care recipients (Mills & Rose, 2011; Singh et al., 2004). The use of mindfulness-based approaches in a randomized controlled trial of caregiver training versus treatment as usual also resulted in a reduction of aggressive events demonstrated by care recipients (Singh et al., 2016).

Third-party investigations of the effectiveness of a mindfulness intervention have also shown support for this model in improving caregiver outcomes. Noone and Hastings

(2010) investigated the effectiveness of a short-term, mindfulness-based training for caregivers. This intervention was a short-term workshop on stress and coping based on the Promotion of Acceptance in Carers and Teachers (PACT) model, which is related to

Acceptance and Commitment Therapy (ACT) (Hayes et al., 1999) that uses mindfulness as a main component. Results showed a medium effect size of the intervention on self- reported stress at post-test. Greatest reductions in general stress were found for caregivers who had higher reported stress and less professional training at baseline. A follow-up study on values and psychological acceptance as correlates of burnout (Noone &

Hastings, 2011) called for additional research on acceptance and mindfulness process variables, as well as interventions to increase resilience in caregivers working with problem behavior. A randomized controlled trial of a mindfulness-based workshop versus control for caregivers working with problem behavior found that participating in the workshop was associated significantly greater reductions in distress (McConachie et al.,

2014), although these results are not surprising given that the control group did not undergo an alternative treatment.

External Predictors of the Effect of Adult Aggression on Caregivers

Beyond internal cognitive processes that may mediate the effect of adult aggression on caregiver outcomes, additional external factors may influence the aggression – caregiver outcomes relationship. The amount of care needs displayed by adults with DD may independently influence caregiver burnout, resilience, and likelihood of retention, and can be further compounded, or moderated, by the presence of aggression. Examples of care needs that are prevalent in adults with DD are physical and mental health care needs. Another variable that may independently influence caregiver outcomes is the amount of social support available in the caregiver’s environment. When adult with DD needs are high or social support is low, the addition of adult aggression may result in higher burnout, reduced resilience, and lower likelihood of retention. The following sections review existing literature on the proposed predictor variables under investigation in this study: adult physical health, mental health, and the workplace environment.

Adult physical health. Adults with DD have been shown to have poorer overall physical health than the general population. Specifically, adults with DD are reported to have a greater number of chronic health conditions, higher rates of obesity, poorer dental health, and reduced access to health screens such as breast, cervical, and prostate cancer

(Havercamp, Scandlin, & Roth, 2004; Scott & Havercamp, 2014). An analysis of data from a national health surveillance survey showed that 14% of adults with a disability were reported to have poor health compared to 1% of adults without a disability

(Havercamp & Scott, 2015). Additionally, medical practitioners typically have little training in working with the DD population and therefore are less likely to be able to identify and treat health concerns that are more prevalent in this population (Long-Bellil et al., 2011; Minihan et al., 2011), though training programs have just begun to educate medical students on DD in the last few years.

Factors associated with physical health in the DD population include physical activity (Frey, Stanish, & Temple, 2008) and secondary factors associated with low physical activity (Durstine et al., 2012; Kinne, Patrick, & Doyle, 2004), such as obesity, high blood pressure, and risk for cardiovascular disease. Mental health concerns often result in the prescription of multiple psychotropic medications that play a cyclical role in causing adverse side effects. Long-term use of certain medications has been linked with impaired cognitive function (Barker, Greenwood, Jackson, & Crowe, 2012), decreased bone density (Meaney et al., 2004), and obesity (Allison et al., 1999; Schwartz, Nihalani,

Jindal, Virk, & Jones, 2004).

One study identifying profiles of aggressive behavior in adults with DD found that adults who engaged in violent or self-directed aggression were more likely to have a physical disability than adults displaying other forms of aggression, though adults with different aggression profiles were not significantly different in ratings of health based on the Medical Outcomes Study Short Form Health Survey (Ware & Sherbourne, 1992)

(Crocker et al., 2007). Adults with DD with more intensive needs and engage in unspecified challenging behavior have been found to experience higher turnover rates in their caregivers (Ejaz et al., 2013; US Department of Health and Human Services, 2006), suggesting that poorer physical health may be a risk factor for reduced coping and increased burnout or turnover in caregivers. Research has yet to explore the role that physical health plays in predicting caregiver burnout and turnover.

Adult mental health. Population-based studies have estimated that 11 to 41% of adults with DD have a comorbid mental disorder (Cooper, Smiley, Morrison,

Williamson, & Allan, 2007; Morgan, Leonard, Bourke, & Jablensky, 2008; Schützwohl et al., 2016). One study exploring prevalence of mental disorders versus problem behavior using a stratified randomized cluster sampling procedure found a point prevalence of 10.8% for mental disorders and 45.3% for problem behavior; however, authors believed this to be an underestimation since this rate of mental disorders was lower than that found in the general population (Schützwohl et al., 2016). As in the general population, depression and anxiety are commonly identified in the DD population

(Jolin, Weller, & Weller, 2012). Despite the perceived underestimation of the prevalence of mental disorders in the DD population, a high amount of research on psychiatric disorders in individuals with DD has been conducted, with the greatest progress

occurring in genetic research and behavioral phenotypes of genetic syndromes (Matson &

Shoemaker, 2011).

Many environmental variables place adults with DD at higher risk of having psychiatric concerns: they are less likely to have emotional supports, social supports, and are at higher risk of encountering stressors (Scott & Havercamp, 2014). Individuals with

DD have higher vulnerability to stressful life events, with the experience of only one stressor increasing the odds of having a psychiatric disorder two to five-fold in one community-based study (Tsakanikos, Bouras, Costello, & Holt, 2007). As in the general population, life events are significantly associated increased likelihood of psychiatric disorders including depression, schizophrenia, personality disorder, and adjustment reactions (Tsakanikos et al., 2007).

Concerning demographic risk factors of psychiatric disorder, being female is significantly associated with increased risk (Lunsky, Bradley, Gracey, Durbin, & Koegl,

2009; Tsakanikos et al., 2007). Ethnicity also appears to play a role; one large study of clinical records for adults with ID referred for psychiatric evaluation found that adults who were black or another ethnic minority were more likely to be diagnosed with schizophrenia and autism spectrum disorder than adults who were white (Tsakanikos,

McCarthy, Kravariti, Fearon, & Bouras, 2010). Individuals who have been identified as having a psychiatric disorder were overall younger when they first encounter psychiatric services, more likely to have had inpatient hospitalizations, have longer lengths of stay in an admission, and more likely to engage in self-harm or suicidal behavior (Morgan et al.,

2008).

Mental health and aggression. In both the general and DD population, the evidence for aggression being a symptom of psychiatric disorder has been mixed.

Aggression has been positively associated with psychotic disorders (Tsiouris, Kim,

Brown, & Cohen, 2011), ASD (McClintock et al., 2003; Tsiouris et al., 2011; Tyrer et al.,

2006), personality disorders, impulse control disorders, and mood disorders (Tsiouris et al., 2011). Adults displaying violent and externalizing aggression were found to be more likely to have an Axis 1 psychiatric disorder and higher ratings for ASD, psychosis, paranoia, depression, and dependent personality subscales on the Reiss Screen (Reiss,

1988) than adults displaying milder forms of aggression (Crocker et al., 2007). Mood swings and symptoms of frustration have been associated with higher levels of physical aggression (Tyrer et al., 2006). Adults with ID and ASD were found to be four times more likely to exhibit challenging behavior than adults with ID only (McCarthy et al.,

2010). Several studies have failed to find support for behavioral equivalents, such as aggression, as actual core features of psychiatric syndromes in adults with ID (Melville et al., 2016; Tsiouris, Mann, Patti, & Sturmey, 2003), but rather identified aggression as a final common pathway for exhibiting distress (Melville et al., 2016). Irritable mood might be a primary behavioral symptom in depression for some individuals with ID and aggression (Charlot et al., 2007).

One large epidemiological study (n = 4,069) in the US found psychiatric symptoms of impulsivity and mood dysregulation to be associated with aggression, and further relationships between types of aggression, diagnoses, gender, and functioning level (Tsiouris et al., 2011). In another study (Crocker et al., 2007), four out of five aggression profile subtypes as measured by the Institute for Basic Research – Modified

Overt Aggression Scale (Cohen et al., 2010) were found to be associated with Impulse

Control disorder and Bipolar disorder. Psychotic disorder was strongly associated with all aggression subtypes except self-injurious behavior. Anxiety was highly associated with self-directed physical aggression. To a lesser extent, anxiety was associated with self- directed verbal aggression; OCD was associated with physical aggression against objects; personality disorders was associated with verbal aggression towards others, self, and physical aggression towards self; and ASD was associated with physical aggression towards others, self, and objects. In another study (Crocker et al., 2007), violent and aggressive behavior was associated with greater symptoms of psychosis, paranoia, depression, and dependent personality disorder in adults with mild to moderate ID.

In contrast, reviews of evidence have failed to find clear support for aggression being a behavioral indicator of psychiatric disorders such as depression in adults with ID

(Davies & Oliver, 2014; Tsiouris et al., 2011). This failure was largely due to methodological issues associated with sample recruitment and the measures of challenging behavior and psychopathology that were used. Aggression has not been identified as a key diagnostic symptom of specific psychiatric illnesses (Hurley, 2008).

Externalizing symptoms such as aggression have been confirmed as a secondary condition of acute psychiatric conditions (Charlot, 2005; Charlot et al., 2007). Some have suggested that aggression may be better accounted for by tertiary variables, such as income, unemployment, victimization (Schwartzman, Serbin, Stack, Hodgins, &

Ledingham, 2009), substance abuse (Mulvey et al., 2006), and ID severity. Tsiouris and colleagues (2011) found that mild to moderate ID was more strongly associated with verbal aggression towards others and self, while severe to profound ID was associated

with physical aggression towards self and objects. Female sex was associated with verbal aggression towards self. Psychiatric disorders may lead to an exacerbation of pre-existing aggressive behavior (Cooper, Melville, & Einfeld, 2003), by reducing tolerance to aversive events or stimuli (Hemmings, Gravestock, Pickard, & Bouras, 2006; Tsiouris et al., 2003).

Whether aggression acts as a symptom of psychiatric illness or a behavioral manifestation of secondary variables associated with a psychiatric disorder, the presence of a psychiatric disorder may result in greater severity of aggression and in turn greater challenges for caregivers in daily interactions with adults. It is anticipated that working with individuals with both DD and psychiatric disorders would have an additive effect on caregiver stress and on negative coping, burnout, and turnover.

Caregiver workplace characteristics. Employers are, to some extent, responsible for assuring safety of caregivers and a healthy work environment. Some research has explored how organizational factors, such as pay level, employee benefits, work demands, supervision style, and social support from colleagues affected stress, coping, and retention in the DD field (Beadle-Brown et al., 2014; Chou, Kröger, & Lee,

2010; Ejaz, Bukach, Dawson, Gitter, & Judge, 2015; Ejaz et al., 2013; Gray &

Muramatsu, 2013; Hensel, Hensel, & Dewa, 2015; Kazemi, Shapiro, & Kavner, 2015;

McKillop & Minnes, 2011; Mutkins, Brown, & Thorsteinsson, 2011; Powers & Powers,

2011; Thomas & Rose, 2010). The following sections will review evidence for the role of salary and benefits, work demands, social support, and caregiver demographic factors in predicting burnout and likelihood of leaving a caregiving position.

Salary and benefits. Some evidence has been found for lowest caregiver satisfaction associated with rate of pay in community-based residential settings

(Robertson et al., 2005). Pay level and employer-based benefits, such as health insurance, have been associated with greater caregiver retention (Ejaz et al., 2013;

Howes, 2004, 2008). A 2011 survey of caregiver turnover in Ohio found a that factor contributing to higher turnover, beyond high stress, was pay (Ejaz et al., 2013). Average hourly pay for community-based caregivers in the DD field was between $8 and $12, which was lower than the hourly rate for caregivers working in the mental health, nursing home, and home health fields. Community-based caregivers were paid less than caregivers working in developmental centers, who on average received $17 per hour.

Recent efforts at the state level to increase satisfaction have been made by increasing the pay of community-based caregivers by 6% in the 2016 – 2017 fiscal year (Martin, 2015).

In addition to low pay, caregivers may be motivated to leave their jobs by a lack of employer benefits. In 2011, an estimated 65% of provider agencies in Ohio reported that they provided paid vacation, but less than 50% provided other benefits: paid holidays

(42%), career ladder programs (40%), paid sick leave (47%), partly paid health insurance

(44%), and fully paid health insurance (7%). The DD agencies categorically reported lowest number of benefits offered when compared to mental health, nursing home, and home health agencies.

Despite employee dissatisfaction with pay, employer agencies may have low motivation to engage in efforts to reduce turnover related to salary dissatisfaction by increasing hourly wage. In a study of turnover and wage subsidies in Illinois, Powers and

Powers (2011) found that the government subsidized the provision of care through

Medicaid and therefore also paid for turnover-related costs. Higher turnover agencies received significantly more reimbursements for training from state Medicaid programs; specifically, a 10% higher turnover rate translated into an additional $16 per employee of annual reimbursements. Higher worker turnover was also unassociated with increased residential vacancies. Consequently, agencies were unlikely to be motivated to increase employee retention on their own.

Work demands. The demands associated with care planning for adults with

DD have also been shown to predict turnover, particularly when there is a misfit between the caregiver’s skills and his or her job expectations (Ejaz et al., 2013).

Working under poor staff ratios and for newer agencies has also been associated with greater turnover (Ejaz et al., 2013; US Department of Health and Human

Services, 2006). Greater job satisfaction has been reported by caregivers working in small community homes over medium-sized group homes and institutions among

Taiwanese caregivers working with adults with intellectual disabilities who did not have problem behavior (Chou et al., 2010).

Social support. The number of people in a support network and the quality of support received from one’s peer group at work plays a key role in quality of care delivered by caregivers to care recipients (Buntinx, 2008). Higher turnover has been associated with having higher negative interactions and less social support at work among staff working for long-term care facilities for DD in Ohio (Ejaz et al., 2015).

As previously mentioned in the review of the literature on resilience, social support was found to mediate the relationship between caregiver resilience and caregiver

perceived health in caregivers of people with ASD (Ruiz-Robledillo et al., 2014), and to influence resilience in parents of children with IDD (Peer & Hillman, 2014).

Support from supervisors and coworkers both play important roles but appear to be different in the role that they play - one meta-analysis across several occupations found that supervisor support over peer support predicted intention to quit (Ng & Sorensen, 2008); additionally, another large study of 323 paid caregivers from five community-based IDD agencies found that supervisory support and internal locus of control helped caregivers manage work stress and its association with intention to quit one’s job (Gray & Muramatsu, 2013). General ratings of supervisor support have been shown to predict the emotional exhaustion and depersonalization domains of the Maslach Burnout Inventory (Vassos & Nankervis,

2012), as have individual components of supervisor support, specifically job feedback and caregiver role ambiguity (Vassos, Nankervis, Skerry, & Lante, 2013).

Though there has been much evidence for social support playing a significant role in the development of burnout in caregivers of adults with DD, the role of client behavior problems has not been thoroughly explored. Mutkins and colleagues (2011) investigated how depression, anxiety, organizational support, and social support predicted symptoms of burnout in caregivers working with problem behavior. They found that depression and organizational support predicted burnout, while staff social support satisfaction moderated the connection between high psychological stress and less emotional exhaustion. Less social support or satisfaction with social support was correlated with low personal accomplishment.

This model accounted for only 42% variance in burnout, suggesting that additional

factors related to caregiver coping and organizational structure may contribute to the relationship between stress and resilience. This study was limited by not using a psychometrically validated measure of problem behavior.

Perceived reciprocity in relationships between the employing agency and caregivers, caregivers and coworkers, and caregivers and care recipients was measured as it related to burnout, stress, and helping behavior in 102 caregivers in the UK (Thomas & Rose, 2010). Reciprocity with the employing agency and colleagues significantly predicted the emotional exhaustion component of burnout, accounting for 36.7% of variance in a regression model, and depersonalization.

Reciprocity with the employing agency was the only predictor of personal accomplishment.

Associations between social support, burnout, and aggression severity, and the moderating effect of social support on the aggression – burnout relationship was explored in a sample of caregivers working in a medium-level security facility and community-based services for adults with IDD. The authors found that while social support was significantly inversely correlated with the emotional exhaustion scores from the Maslach Burnout Inventory, social support was not a significant moderator

(Howard et al., 2009). This study found the only significant moderating variable to be self-efficacy of caregivers, suggesting that when caregivers have more training and exposure to violence from care recipients, they felt more capable of handling aggression, which in turn was associated with decreased burnout.

Caregiver Demographic Predictors. Several studies have linked turnover rates and risk of burnout to staff demographic variables, such as age, education level, number

of dependents, performance level at work, number of absences, and skill level (Ejaz et al.,

2013; US Department of Health and Human Services, 2006). Gender was unassociated with job satisfaction in a Taiwanese sample (Chou et al., 2010) and did not have an impact on choice of behavioral response to aggression in caregivers (Kleinberg & Scior,

2014). Age has been found to be a significant predictor of satisfaction with the overall job, performance incentives, operating conditions, nature of work, and communication in a study of residential caregivers of adults with intellectual disabilities without aggressive behavior; older adults were more satisfied with their jobs overall (Chou et al., 2010).

Older employees and employees who have been working at their jobs longer have also been less likely to report burnout and a desire to quit (Hensel et al., 2012). Unfortunately, caregivers are more likely to be younger (between 18 and 39 years old) and from low- income families (Ejaz, Noelker, Menne, & Bagaka’s, 2008; Harris-Kojetin, Lipson,

Fielding, Kiefer, & Stone, 2004; Hatton et al., 2001; Howes, 2008) which is a population that is less likely to have professional trainings and less likely to view direct support as a career versus simply a job. Young age and inexperience may serve as risk factors for being less resilient in a field in which daily contact with potentially aggressive or other challenging behavior is expected, though this relationship has yet to be investigated.

Skill level can include how much professional training has been attained, years of experience in the developmental disabilities field, years of education, and how good of a fit the individual is for the type of work involved (Ejaz et al., 2013;

US Department of Health and Human Services, 2006). One example of professional training options is the Ohio DSPaths program, which is a member of the National

Alliance of Direct Support Professionals. It provides trainings and multiple

certification levels to improve competence of workers in the caregiving profession.

A survey conducted by the organization found that DSPaths graduates had improved retention rates (Ohio Alliance for Direct Support Professionals, 2015). Chou and colleagues (2010) found number of years of education to significantly predict overall job satisfaction in Taiwanese residential caregivers. In a study investigating caregivers’ likelihood of using safety-focused versus punitive-focused responses when managing aggressive adults with DD (Kleinberg & Scior, 2014), less experienced caregivers and caregivers who were more likely to respond with depressed or angry feelings to vignettes were more likely to use punitive responses.

Caregivers with more experience were more likely to use safety-focused responses.

Mills and Rose (2011) have shown that time working in the field and professional qualifications were not related to burnout; in contrast, Hensel and colleagues (2012), who had a much larger sample, did find support for such a relationship. Having more years of education, higher burnout, and poorer social support quality at work were associated with job satisfaction, which in turn was associated with higher intention of quitting in paid caregivers (McKillop & Minnes, 2011).

In high demand settings, protective factors have been identified that may buffer the effects of unsatisfactory quality of work life. A qualitative study of a small sample of paid caregivers in Canada found four major themes of motivators towards job retention: personal connections with the adults supported, the nature of the work including opportunities for advancement and the work environment, practical motivations such as job security; and personal motivations such as to make a difference in the lives of vulnerable people (Hensel et al., 2015). The existing

literature on workplace factors has been primarily cross-sectional and focused on the impact of workplace factors on caregivers of adults with DD in general without looking at the additional role of adult with DD aggression. The current study will add to the literature in investigating the roles of workplace factors in influencing the adult aggression – caregiver burnout and caregiver retention relationship using longitudinal data and standardized measures of work life quality.

The Current Study

The current study will investigate the relationship of verbal and physical aggression with caregiver burnout, resilience, and retention. The following hypotheses were evaluated in a sample of paid staff caregivers.

Primary hypotheses. 1) Aggression severity was associated with higher burnout compared to measure

norms and with low resilience scores in turned over caregivers.

2) Resilience mediated the relationship between physical health needs in adults

demonstrating aggression and caregiver burnout.

3) Caregiver resilience mediated the positive relationship between mental health

needs in adults demonstrating aggression and caregiver burnout.

4) Caregiver retention was predicted by lower levels of mental and physical health

concerns and higher levels of proactive coping, mindfulness, resilience, and social

support.

Secondary hypotheses. 5) Higher burnout and reduced resilience were associated with frequency of

aggression being intrinsically attributed.

6) Proactive coping mediated a positive relationship between aggression severity and

burnout in retained caregivers.

7) Mindfulness mediated a positive relationship between aggression severity and

burnout in retained caregivers.

8) Social support moderated a weaker relationship between aggression severity and

burnout in retained caregivers.

Chapter 3: Methods

Participants

Participants in this study were direct support professionals who endorsed experiencing either physical and/or verbal aggression at least once a month from an adult with DD to whom he or she provided care at the time of the study. One hundred and three direct support professionals participated in this study. Of 103 participants met at Time 1, one was unable to complete initial questionnaires due to pain experienced from a physical injury caused by an aggressive adult with DD, resulting in complete Time 1 data for 102 participants. Twelve (12%) were lost to follow up at Time 2, resulting in complete data for 90 participants. The sample was divided into three groups at follow up to examine differences in demographic variables: 1) participants who were still working with their aggressive adult at Time 2; 2) participants who had stopped working with their adult due to his or her aggressive behavior; and 3) participants who had stopped working with their adult for other reasons. Power analysis was conducted to identify the appropriate target sample size. To achieve a medium to large effect size with a power of .80 and Type 1 error set at 0.05 for three groupings, a sample size of 75 was needed (Cohen, 1992).

Previous work on staff caregiver turnover found a 33% response rate (Castle, Engberg, &

Men, 2007; Dill & Cage, 2010; Ejaz, Bukach, Dawson, Gitter, & Judge, 2013). We therefore anticipated requiring 133% of the required sample size to account for attrition, resulting in a final targeted sample of 100. We additionally reviewed

criteria proposed for required sample sizes to achieve a power of 0.80 using continuous variables in mediation analysis (Fritz & MacKinnon, 2007). Fritz and MacKinnon (2007) recommended using bias-corrected (BCa) bootstrapping approaches as robust methods for calculating mediated effects. As we were anticipating moderately to highly mediated relationships between aggression’s impact on caregiver burnout, a minimum final sample size of 53 to 71 participants was recommended based their criteria.

Inclusion criteria were: a) providing direct care to an adult with DD from whom the participant experienced either physical or verbal aggression at least once a month, b) having worked with that adult for at least three months, c) being a native English speaker, and d) being willing to provide a personal phone number or email to follow-up with data collection at Time 2. A broader inclusion criteria than the initially proposed experience of weekly aggression from an adult with DD was used due to difficulties with recruitment.

The criterion of three months has been used in other studies of staff caregiver stress and burnout in response to challenging behavior (Howard, Rose, & Levenson, 2009; Mills &

Rose, 2011) and was therefore used in the current study.

Measures

Participants completed packets of questionnaires with three subsections: a) a screening interview to confirm participants’ eligibility for study participation, b) questionnaires characterizing one adult with DD who exhibits monthly aggression towards the participating staff; and c) questionnaires reporting on characteristics of the caregiver participant. Copies of questionnaires created for this study can be found in

Appendix 2.

Adult with DD questionnaires. The following questionnaires were completed by caregiver participants to collect information about the adult with DD from whom the caregiver experienced regular physical or verbal aggression.

Adult with DD Demographics Questionnaire. The demographics questionnaire was completed to collect information on the adult with DD whom the participating caregiver identified as exhibiting monthly aggression towards him or her. Items requested information on the adult’s age, race, ethnicity, gender, estimated intellectual disability severity level, and the length of time the participant has been working with this individual.

Adult Scale of Hostility and Aggression, Reactive and Proactive. (A-SHARP;

Matlock & Aman, 2011). This scale was developed as a tool to measure severity of interpersonal aggression in adults with DD. It measured severity of five different aggression subtypes: Verbal Aggression, Physical Aggression, Covert Aggression,

Hostile Affect, and Bullying. Because the A-SHARP measures different types of aggression, it was selected over other commonly used measures of aggression, such as the Behavior Problems Inventory which includes only one subscale for aggression directed towards others (Rojahn, Matson, Lott, Esbensen, & Smalls, 2001). For each

Problem category, the A-SHARP also produces a Provocation score, which measures the extent to which the subject engaged in specific examples of aggression proactively or reactively. Proactive aggression is intrinsically motivated and can include acts to achieve personal gain, such as the personal amusement gained from observing someone cry from being bitten, acts to access desired items or activities such as a meal, or acts to escape a non-preferred activity, such as escaping work demands. Reactive aggression includes acts

that are made in response to an environmental stimulus that was initially perceived as aggressive or distressing, such as hitting someone who spoke to him or her in a harsh tone, biting someone who had hit him or her first, or yelling profanities in response to being startled by a loud sound. Recent evaluations of the psychometric properties of the

A-SHARP (Matlock & Aman, 2014; Rojahn, Rick-Betancourt, Barnard-Brak, & Moore,

2017) showed independence between the Problem and Provocation scales. A-SHARP scale scores had significant convergent validity with aggression severity scores of the

Behavior Problems Inventory (r = .33-.86, all p < .01). Good interrater reliability was found for the Problem subscales (ICC = .59-.78) and the Provocation subscales (ICC =

.54-.78). Internal consistency was moderate to high (r = .67-.78) (Matlock & Aman,

2014).

Physical Health Questionnaire. A measure of adult with DD physical health was created for this project as there are few existing measures of physical health needs developed specifically for the DD population. The measure included examples of health needs requiring support due to physical or medical limitations commonly experienced by adults with DD, such as impairments in gross motor skills, fine motor skills, sensory perception, activities of daily living skills that risk poor quality of health, and specific medical conditions such as obesity and epilepsy. Items were included that identified support needs in: lifting or moving, monitoring for falls, monitoring for breathing or swallowing problems, dental care, diet management, injections, toileting, eating, daily medications, sensation and perception (e.g., seeing, hearing, feeling), daily exercise, and care for injuries. The questionnaire additionally included one item on which the

respondent was to subjectively rate the adult with DD’s overall level of physical health on a five-point scale, from poor to excellent.

Psychiatric Assessment Schedules for Adults with Developmental Disabilities

Checklist. (PAS-ADD; Taylor, Hatton, Dixon, & Douglas, 2004) The PAS-ADD is a screener for symptoms of psychiatric disorders in adults with DD (Hatton & Taylor,

2008). Completed by informants, this instrument provided a measure of mental health in adults with DD. Items from these scales corresponded to symptom criteria of psychiatric disorders as defined in the International Classification of Diseases (World Health

Organization, 2010). The PAS-ADD included scales for Affective/Neurotic, Organic, and

Psychotic disorders. It contains 25 symptom items that are scored on a four-point scale.

Cut-off scores are provided for each subscale to indicate elevated levels of symptoms that warrant further psychological assessment. Studies have shown good sensitivity of the

PAS-ADD in detecting general mental health problems. Psychometric properties include adequate internal and interrater reliability, and satisfactory validity (Moss et al., 1998;

Sturmey, Newton, Cowley, Bouras, & Holt, 2005).

Participant Questionnaires. The following questionnaires were also included to gather information about the caregiver participant.

Participant Demographics. A measure was created to collect demographic information on the caregiver participant completing the survey, specifically age, race, ethnicity, education level, religiosity, marital status, primary spoken language, and parental status. Concerning employment variables, caregivers were surveyed as to how long they had been working in the DD field, at their current employing agency, their current hours per week worked, hourly wage, types of worker’s benefits received,

whether they were working a second job, hours per week at that second job, and how many hours per week the participant was working with the adult with DD they were responding about in the study.

Maslach Burnout Inventory - Human Services Survey. (MBI; Maslach et al.,

1997) The MBI – Human Services Survey is a 22-item measure of burnout that can be used across health and human services settings. It yields subscale scores of three psychological constructs conceptualized as comprising burnout: Emotional Exhaustion,

Depersonalization, and Personal Accomplishment. A meta-analysis of the literature on burnout in the DD field identified 15 relevant studies, all of which used the MBI (Skirrow

& Hatton, 2007). Previous work with the MBI (Hastings et al., 2004) has confirmed its three-factor solution with good reliability in the caregiver population. Test-retest reliability based on samples of graduate students in social welfare and administrators in a health agency showed Cronbach’s alpha of 0.60 for Depersonalization, 0.82 for

Emotional Exhaustion, and 0.80 for Personal Accomplishment, which were all significant at the p < .001 level. Independent studies of the psychometric properties found inter-rater reliability scores to range from Κ = 0.50 - 0.72 for Depersonalization, Κ = 0.59 - 0.75 for

Emotional Exhaustion, and Κ = 0.57 - 0.65 for Personal Accomplishment (Jackson,

Schwab & Schuler, 1986; Lee & Ashforth, 1993; Leiter, 1990; Leiter & Durup, 1996).

Discriminant validity analyses compared the validation sample’s scores to the “General job satisfaction” measures from the Job Diagnostic Survey. The authors reported a moderate negative correlation of job satisfaction with both Emotional Exhaustion (r = -

.23, p < .05) and Depersonalization (r = -.22, p < .02), and a slight positive correlation with Personal Accomplishment (r = .17, p < .06). These findings suggested that, while

related to satisfaction, burnout is a distinct construct. Scores on the MBI have also been found to be unrelated to social desirability in one study; there were no significant correlations found between the Social Desirability Scale (Crowne & Marlowe, 1960) and the MBI-HSS in one sample of graduate students in social welfare (Maslach, Jackson, &

Leiter, 1997).

The Areas of Worklife Survey. (Leiter & Maslach, 2000) This tool was created for use in conjunction with the MBI to measure staff perceptions of the quality, strengths, and weaknesses of the work environment. In this study, it was used as a measure of organizational stressors affecting caregiver psychological outcomes and retention. The

Areas of Worklife Survey contains 28 items rated on a five-point scale. Items assess six areas that have been identified as primary organizational contributors to burnout: the amount of work (Workload), amount of control that is given over decisions at work

(Control), how rewarding the job is (Reward), the amount of social support available from peers and supervisors (Community), the perceived fairness in decisions that are made at work (Fairness), and whether the respondents beliefs and values align with those of the organization (Values). The Areas of Worklife Survey demonstrates reliability and validity across a variety of work settings. Test-retest reliability for subscales range from

0.51 to 0.62 (Cronbach’s alpha), suggesting consistency in measures over time but leaving room for variation. It possesses small to moderate validity, with measures on subscales being strongly correlated with category of complaint reported by subjects in a validation sample of hospital workers (Leiter & Maslach, 2003).

Brief COPE. (Carver, 1997) This measure contains 20 items measuring coping styles. It was used to measure methods of coping employed by caregiver participants

when experiencing aggression from the adult with DD. This measure is theoretically derived from Lazarus’s (1966) cognitive-behavioral model of coping. The original version was designed to be used with cancer patients and individuals coping with disasters. Instructions were modified for use in the current study, though items themselves were general enough that they did not require any editing. The Brief COPE produces adequate internal reliability for its subscales: Self-distraction (α = .71), Active

Coping (α = .68), Denial (α = .54), Substance use (α = .90), Using Emotional Support (α

= .71), Using Instrumental Support (α = .64), Behavioral Disengagement (α = .65),

Venting (α = .50), Positive Reframing (α = .64), Planning (α = .73), Humor (α = .73),

Acceptance (α = .57), Religion (α = .82), and Self-Blame (α = .69). Factor analysis of items showed subscales loading onto five factors: Avoidance-based coping (substance use, religion, humor, behavioral disengagement), Support Seeking (emotional support, instrumental support), Active Coping (active coping, planning, positive reframing, and one Acceptance item), Venting and Self-distraction (as implied), and Denial and Self- blame (as implied). Its multi-dimensional factor structure has been confirmed in a sample of Chinese college students by Tang, Chan, Ng, and Yip (2016). Items can be further categorized into problem and emotion-focused domains if desired (Carver, 1997).

The Brief COPE has been used in studies on coping with challenging behavior in

DD (Hastings & Brown, 2002; Mitchell & Hastings, 2001). One study on staff stress and burnout found good reliability of the adaptive coping and maladaptive coping dimensions of the Brief COPE in the DD field (Hastings & Brown, 2002). The Brief COPE has also been used more recently in studies investigating the mediating role of subjective burden on the relationship between coping styles and anxiety in adults caring for elderly relatives

(del-Pino-Casado, Pérez-Cruz, & Frías-Osuna, 2014) and in exploring coping in parents and caregivers of individuals with DD (Ingersoll & Hambrick, 2011; Lloyd & Hastings,

2008; Seymour, Wood, Giallo, & Jellett, 2012).

The Kentucky Inventory of Mindfulness Skills. (KIMS; Baer, Smith, & Allen,

2004) A review of mindfulness measures (Sauer et al., 2012) recommended use of the

KIMS (Baer, 2004) or the Mindful Awareness Attention Scale (Brown & Ryan, 2003) to measure mindfulness skills based on each of their psychometric properties and frequent use in the literature. The KIMS was selected of these two due to its conceptualization of mindfulness as a multidimensional construct by evaluating awareness of behavior, thoughts, feelings, and sensations, whereas the Mindful Awareness Attention scale measured primarily awareness of bodily sensations. Specific subscales of the KIMS are

Observing, Describing, Acting with Awareness, and Accepting without Judgment. Each subscale contains between four and six items rated on a five-point scale, yielding 20 items total. Confirmatory factor structure found strong factor loadings (all above .50) and good model fit for a four-factor model (RMSEA = .07, CFI = .95). An examination of the test-retest validity and internal consistency showed adequate to good results of subscales

(Baer et al., 2004).

Brief Resilience Scale. (Smith et al., 2008) This scale was created to be distinct from other existing measures of resilience, such as the Connor-Davidson Resilience Scale

(Connor & Davidson, 2003)and the Resilience Scale – 14 (Wagnild, 2011), which have focused on a variety of constructs related to resilience, such as resistance to illness, adaptability, and coping with trauma. This measure focuses primarily on evaluating the construct of resilience based on its original meaning, the individual’s ability to bounce

back, or recover from stress (Agnes, 2005). While it is indicated for individuals dealing with health-related stressors, its items are non-specific and generalizable across settings.

It consists of six items rated from “Strongly Disagree” to “Strongly Agree” on a five- point Likert scale. A recent review on available resilience measures recommended the

Brief Resilience Scale compared to other existing resilience measures based on is psychometric properties (Windle, Bennett, & Noyes, 2011). Its items more directly measure the psychological ability to “bounce back” rather than access to resources related to resilience, such as social support. The psychometric properties of the BRS were tested on two student samples and a sample of patients with cardiac and chronic pain in relation to coping measured using the Brief COPE and other variables (Smith et al., 2008). Factor analysis of the BRS showed a one-factor solution accounting for 55 to 67% of variance, with good internal consistency (α = .80 - .91). The BRS was consistently positively correlated with active coping and positive reframing and negatively correlated with ineffective coping and depersonalization behaviors, such as behavioral disengagement, denial, and self-blame. In assessing predictive validity, BRS scores were negatively related to stress, anxiety, depression, and negative affect, and positively related to social support. No gender differences were found on BRS scores in the two validation samples of college students, however scores were shown to be significantly different for subjects with Type D personality (high negative affectivity and social inhibition) (Smith et al.,

2008).

Procedure

Both the Ohio State University’s Institutional Review Board and Franklin County

Board of Developmental Disabilities’ ethics committee approved this study. Participants were recruited from residential provider agencies, day programs, and sheltered workshops located in Franklin County, Ohio. Contact information for agencies was accessed through a public database from the Ohio Department of Developmental

Disabilities and the contact list from the Adult Behavior Support Services program through the Ohio State University Nisonger Center, an organization contracted by

Franklin County Board of Developmental Disabilities to provide behavioral intervention services to families and agencies caring for adults with DD who exhibit problem behavior. Agencies were asked to distribute study flyers and to schedule study recruitment meetings with their staff. Study personnel also recruited participants by attending staff trainings scheduled by Nisonger Adult Behavior Support staff. Finally, study information was distributed at the Ohio Coalition for the Low Incidence of Autism

2015 conference.

Direct support professionals are more likely to report negative perceptions regarding behavior when asked to think about a real individual with whom they work, rather than a consumer or patient described in a vignette (Wanless & Jahoda, 2002).

Consequently, several studies in the staff stress literature (e.g., Mills & Rose, 2011), have requested participating staff to think about consumers with whom they work. To increase the ecological validity of these results, participants were requested to call to mind one adult with DD with whom they work closely and who displays at least monthly

aggression towards him or her. Additionally, while direct support professionals often work with multiple aggressive adults with DD, the participant was asked to think of one adult who stood out the most as impacting his or her work or day when he or she engaged in aggression towards the participant.

Given the concerns participants may have had regarding the safety of their jobs or increased risk of being judged negatively due to sharing potentially negative information about an adult with DD to whom they are paid to provide care, several steps were taken to avoid biasing participants. First, the study was described as intended to investigate the experiences of direct support caregivers in working with adults with DD who are aggressive. Second, study personnel emphasized at recruitment meetings that the anonymity of adults with DD would be protected, that all information shared as part of this study would be held confidential, and that no information they provided would be shared with participants’ employer agencies. Third, participants were required to meet outside of their scheduled work time and worksite, unless they had explicit permission from their supervisors to participate in the study during work time and were able to secure a private space in order to do so. Since many direct support providers work multiple jobs, study personnel offered to meet with participants at a time and location of their convenience given their limited schedules. Fourth, it was emphasized that study personnel were not allowed to know the name of the adult with DD about whom the participant would be providing information. Rather, only first and last name initials of the adult with DD were collected to be used to remind participants who to complete follow- up questionnaires on at Time 2. These initials were written on a note separate from study

questionnaires and destroyed in front of participants at Time 2 once they were read back to the participant.

Once contact information for people interested in participating was collected at recruitment, they were contacted via phone call or email and asked a series of screening questions to ensure they met inclusion criteria. Participants were reminded during the phone call of steps that would be taken to ensure the anonymity of the adult with DD about whom they would answer questionnaires. Participants were then met at a time and location of their choosing on two separate occasions, separated by three months. At Time

1, participants were consented into the study and completed a series of questionnaires, each of which was first explained by study personnel. After the explanation, participants were primarily left to complete questionnaires independently to reduce the likelihood of participants engaging in biased responding due to being closely observed by study personnel. Background information on both the participant and the adult with DD were collected at Time 1 in addition to the core questionnaires. At Time 2 meetings, participants were first briefly interviewed to determine their current job status, specifically whether they were still working with the adult with DD; whether he or she was working the same number of hours with that adult; if no longer working with the adult or working less hours, why; and if still working with the adult, what factors may have been helping. After completing the interview, applicable questionnaires based on whether the participant was still working with the adult were administered. Participants were provided a gift card to compensate for their time at the beginning of each study appointment completed. They were informed that if they felt uncomfortable at any time

they could end their participation and would be able to keep their gift card. Table 1 lists the measures that were administered at each time point.

Table 1. Measures administered at Times 1 and 2

Time 2 – No Time 2 – longer Still with with Measure Time 1 adult adult Consent X Current job status Questionnaire X X X Staff Demographics Questionnaire X Brief COPE X X Maslach Burnout Inventory (MBI) X X X Areas of Worklife Survey (AWS) X X X Kentucky Inventory of Mindfulness Skills (KIMS) X X X Brief Resilience Scale (BRS) X X X Adult Demographics Questionnaire X Adult Scale of Hostility and Aggression, Reactive X X and Proactive (A-SHARP) Physical Health Questionnaire (PHQ) X Psychiatric Assessment Schedules for Adults with X Developmental Disabilities Checklist (PAS-ADD)

Analysis Plan

First, the final sample was divided into three groups to determine whether there were any significant differences in demographic variables to control for: caregivers who were still working with their aggressive adult with DD at Time 2 (Retained caregivers), caregivers who stopped working with their aggressive adult with DD by Time 2 due to

the adult’s aggression (Stopped – Aggression), and caregivers who stopped working with their aggressive adult with DD by Time 2 due to another reason (Stopped – Other).

Samples were first compared on demographic variables to identify confounders.

Variables identified as confounders were controlled for in subsequent analyses. If no differences were found, the two stopped groups were combined for follow up group comparisons and inferential analyses to preserve statistical power.

Tests of normality found that the variances of most dependent variables were non- normally distributed. Tests of homogeneity of variances between the retained and turnover groups showed that at time 1, heterogeneity in variances was found for the Brief

COPE substance abuse [F(1,83) = 11.08, p < .01], denial [F(1,83) = 7.90, p <.01], and humor [F(1,83) = 4.58, p <.05] based subscales; the A-SHARP Covert Aggression

Provoke [F(1,66) = 5.52, p < .05] and Bullying Provoke [F(1,66) = 4.63, p < .05] subscales; and on the PAS-ADD Total number of life events measure [F(1,62) = 9.16, p

< .05]. At time 2, heterogeneity in variances was found for the COPE religion subscale

[F(1,68) = 7.11, p < .05] and the MBI Personal Accomplishment subscale [F(1,85) =

7.16, p < .01]. The considerable number of variables exhibiting skew and kurtosis led to the selection of non-parametric procedures and bootstrapped estimates of confidence intervals for inferential analyses.

Job status groups (Retained versus Stopped) were compared to on outcome variables and to the respective measure’s validation norms, when available. For hypothesis testing, Spearman’s correlations were first calculated for variables in question due to data being non-normally distributed. Due to the large number of correlation analyses being conducted, bias-corrected and accelerated bootstrapping procedures were

used to estimate confidence intervals as a more robust method to account for Type 1 error and non-normality (Field, 2013; Hayes; 2013). Next, mediation and moderation analyses were calculated to examine the interaction of predictors with resilience and burnout, and moderated mediation analyses when examining the interaction of mental health or physical health and aggression in predicting caregiver outcomes. As recommended by

Hayes (2013), bias-corrected and accelerated bootstrapping estimates with 10,000 resamples of confidence intervals for moderator and mediator effects were performed to account for non-normality of data. To test predictors of retention as a dichotomous outcome variable, binary logistic regressions were performed to determine significant predictors of job retention at Time 2, again using bias-corrected and accelerated bootstrapping procedures to estimate confidence intervals. Categories of predictors (e.g., workplace variables, coping styles, mental health subscale scores) were entered in separate models to explore their unique variance and to preserve power. Significant predictors identified from each regression model were combined to create one overall predictive model of caregiver retention.

Chapter 4: Results

Retention

Of the full sample (n = 102), five participants (5%) were lost to follow-up at Time

2 and seven (7%) were available to contact by phone to indicate whether they were or were not still working with their aggressive adult at Time 2 but did not schedule or show for a Time 2 appointment. This resulted in a final sample of 90 with complete Time 1 and

Time 2 data to assess change in predictors over time and a sample of 97 with complete data to test our study’s hypotheses.

Sixty-four caregivers were retained in their jobs (63%), meaning that they were still working with their aggressive adult with DD at Time 2. Thirty-three caregivers

(32%) had stopped working with their aggressive adult by Time 2. At their Time 2 interview, caregivers who had stopped working with their adult were asked why they left.

Reasons for stopping are shown in Table 2.

Table 2. Caregiver reported reasons for no longer working with their aggressive

adult at Time 2

Reason for stopping Frequency % Adult's aggression 18 55 Adult moved to another home or day program 10 30 Participant moved to work with other adult 6 18 Availability changed 5 15 Participant quit job 4 12 Unknown agency reasons 3 9 Personal reasons 3 9 Promotion within agency 3 9 Difficult to work with parents 1 3 Note. Values add up to more than 100% because some participants reported more than one reason.

Eighteen indicated that it was due to their adult’s aggression, and 15 indicated that it was due to other reasons, including scheduling issues, being moved to work with another adult, or the adult moving to another provider agency. Of the Retained group, 70% were still working the same hours with their adult as they were at Time 1. Fifteen Retained participants (23%) indicated they wanted to stop working with their adult. When asked what helped them continue to work with their adult, primary reasons reported were that the adult’s aggression had decreased (27%), the work was rewarding (23%), and that the participant better understood the function of the adult’s aggression (17%) (see Table 3).

Table 3. Factors indicated as helping caregiver retention

Factors that help with participant retention Frequency % Adult's aggression had decreased 16 27 Finds the work rewarding 14 23 Has a better understanding of adult's behavior 10 17 Personal relationship with adult or adult's family 6 10 Adult's environment improved 4 7 Social support at work 4 7 Felt obligated to the adult 3 5 Did not want a major change in lifestyle or jobs 3 5 The money 2 3 Nothing 2 3 Note. Total adds up to more than 100% due to participants endorsing multiple responses.

Participant demographics

The resulting sample was initially divided into three groups: caregivers who were retained (Retained, n = 64), caregivers who stopped working with their adult due to his or her aggression (Stopped – aggression, n = 18), and caregivers who stopped working with their adult due to other reasons (Stopped – other, n = 15). The three groups were compared on demographics to identify any variables that needed to be controlled for in further analyses. Due to variables having several categories that were endorsed by only a few or zero participants, categories that logically fit together were pooled to increase the power of subsequent tests (McDonald, 2014). Given that participants likely exhibited biased responding when asked sensitive questions such as “why did you quit your job”, the three groupings were not used for hypothesis testing involving inferential analyses.

Rather, the sample was divided into two based on whether they had left their job

(Stopped) or had been retained (Retained). The two-group divide was also chosen to preserve power of regression analyses.

2 Fisher’s exact tests (χF )(Fisher, 1922) were calculated as a non-parametric alternative to chi-squared tests of independence to compare frequencies of demographic categories per group. No significant differences (p < .05) were found using a two or three-group divide for any demographic variable measured: gender, age, race, ethnicity, education level, marital status, parental status, being in school at the time of the study, and number of years working in the DD field. Groups were primarily female (Retained:

2 67%, Stopped - Aggression: 56%, Stopped - Other: 86%; χF = 3.27, p = .19). Most retained caregivers (58%) and caregivers who stopped due to adult aggression (56%) were aged 35 to 54 years, while many caregivers who stopped due to other reasons (57%) were 18 to 35 years old, though these differences were not significant. Most Retained

(56%) and Stopped – Other (71%) caregivers were single. Caregivers who had stopped due to aggression were about equally likely to be single, married/in a domestic partnership, or separated/divorced. Most caregivers in all job status groups had children

(Retained: 63%, Stopped – Aggression: 72%, Stopped – Other: 64%). Fifty percent of

Stopped – Aggression, 43% of Stopped-Other caregivers, and 38% of Retained caregivers had worked in the DD field for five years or less. Twenty-two percent of

Stopped – Aggression caregivers, 36% of Stopped – Other caregivers, and 47% of

Retained caregivers had worked in the DD field for 10 or more years. The highest level of education achieved by majority of caregivers across groups was some college or vocational training after high school (Retained: 59%, Stopped – Aggression: 44%,

Stopped – Other: 50%), and 26 to 36% of caregivers across groups had graduated from college. Caregivers were primarily Christian or Catholic (Retained: 78%, Stopped –

Aggression: 83%, Stopped – Other: 77%). Twenty five percent of the total sample were

African immigrants (Stopped: Aggression = 29%, Stopped: Other = 27%, Retained =

25%), 41% were African American (Stopped: Aggression = 33%, Stopped: Other = 27%,

Retained = 39%), and 33% were Caucasian (Stopped: Aggression = 39%, Stopped: Other

= 13%, Retained = 36%).

Regarding work life and job characteristics, there were again no significant differences between groups in years of experience in the DD field, hourly wage, job benefits received, hours worked per week, hours worked with the aggressive adult, and frequencies of participants in each group who had a second job (see Table 4).

In summary, half of caregiver participants in the Stopped – Aggression group and most caregivers in the Stopped – Other group had worked in the DD field less than five years, whereas slightly more caregivers in the Retained group had worked in the DD field for over 10 years. Caregivers were primarily earning between $10 and $12 per hour. Most caregivers had paid sick leave (43 – 61%) and paid holidays (63 – 83%), whereas much fewer had full or partial health insurance (11 – 36%). Most caregivers across groups worked over 40 hours per week at their job (43 – 67%). Approximately half or more of caregivers in each group also had a second job (45 – 64%). While at their jobs, half or just above half (42 – 56%) of caregivers in each group worked 20 to 40 hours per week with an aggressive adult with DD about whom they completed questionnaires for the current study. See Table 4 for further details on participants’ work life characteristics.

Table 4. Participants’ work life characteristics across job status outcome groups

Frequencies (%)

Stopped: Stopped: 2 Aggression Other Retained χF p Years worked in the DD field 0-5 years 9(50) 6(43) 24(38) 5-10 years 5(28) 3(21) 10(16) 10+ years 4(22) 5(36) 30(47) 4.23 0.37

Hourly wage at current job $8 – 9 4(22) 4(29) 13(20) $10 – 12 8(44) 5(57) 29(45) $12+ 6(33) 2(14) 22(34) 2.44 0.67

Job benefits received Paid sick leave 11(61) 6(43) 37(58) 1.27 0.59 Paid holidays 15(83) 9(64) 40(63) 2.78 0.25 Partial health insurance 2(11) 5(36) 18(28) 2.94 0.24 Full health insurance 5(28) 4(29) 20(31) 0.12 1.00 Bonuses 2(11) 3(21) 16(25) 1.45 0.53 Don't know 2(11) 2(14) 3(5) 2.63 0.23

Hours worked at job per week Less than 20 - 1(7) 1(7) 3.82 0.37 20 – 40 6(33) 7(50) 23(34) Over 40 12(67) 6(43) 40(63)

Second job 9(50) 9(64) 29(45) 3.00 0.61 Weekly hours worked with adult Less than 5 - 1(7) 3(5) 10.02 0.56 5 - 10 2(11) 2(13) 6(9) 10 - 20 4(22) 3(20) 15(23) 20 - 40 10(56) 7(47) 27(42) 40+ 2(11) 2(13) 13(20)

Adult with DD demographics

Each caregiver participant reported on one adult with DD from whom he or she experienced regular physical or verbal aggression. If the caregiver participant experienced regular aggression from multiple adults with DD, the participant was instructed to report only on the adult who had the greatest impact on his or her day when

2 the adult was aggressive. Fisher’s exact tests (χF ) were performed across job status groups at Time 2 to determine whether there were differences in demographics of the aggressive adult with DD and a Kruskal-Wallis H test was performed to determine whether there were significant differences between groups in months of working with their aggressive adult, applying post hoc pairwise comparisons with Bonferroni corrections to identify where significant differences appeared.

The only significant difference was found in the latter variable; caregivers in the

Retained group knew their adult significantly longer than caregivers in the Stopped –

Other group, H = -13.15, p < .01. Otherwise, no significant differences in demographic variables were found. The caregiver sample reported on 55 females and 42 males.

Aggressive adults with DD were primarily between the ages of 18 and 29 years old (50 –

66%). Adults were most frequently Caucasian followed by African American. In the

Retained group, adults with DD had primarily moderate or profound ID; while in both the

Stopped – Aggression and Stopped-Other groups, approximately equal proportions of adults had mild, moderate, or severe/profound ID (see Table 5)

Table 5. Demographics of aggressive adults with DD across job status groups

Stopped - Stopped – Aggression Other Retained 2 n (%) n (%) n (%) χF p Gender Male 11(61) 5(33) 26(41) 12.86 0.26 Female 7(39) 10(67) 38(59) Age 18-29 12(66) 8(53) 32(50) 18.23 0.06 30-39 1(6) 6(40) 15(23) 40-49 1(6) 0(-) 5(8) 50-59 2(11) 0(-) 7(11) 60+ 2(11) 1(7) 5(8) Race African American 2(11) 4(27) 10(16) 11.39 0.17 Caucasian 12(67) 11(73) 52(81) Hispanic 0(-) 0(-) 1(2) Asian American 1(6) 0(-) 0(-) Other 3(16) 0(-) 1(2) DD severity Mild 6(34) 5(33) 12(19) 4.83 0.87 Moderate 4(22) 5(33) 25(39) Severe/Profound 6(33) 4(27) 19(30) Don't know 2(11) 1(7) 8(12) Years of knowing adult Mean(SD) 2.41(2.45) 0.82(0.71) 3.36(3.47) H(3) = 13.15 ** **significant at p < .01

Caregiver burnout

On the Maslach Burnout Inventory, respondents are considered highly burned out if they score high on the Emotional Exhaustion subscale, high on the Depersonalization subscale, and low on the Personal Accomplishment subscale. Respondents are “engaged

with work” if they report low emotional exhaustion, low depersonalization, and high personal accomplishment. At Time 1, 28% of Stopped caregivers and 53% of Retained caregivers reported low burnout, 62% of Stopped at 39% of Retained caregivers reported moderate burnout, and 10% or Stopped and 9% of Retained caregivers reported high burnout. At Time 2, 45% of Stopped and 54% of Retained caregivers reported low burnout, 48% of Stopped and 37% of Retained caregivers reported moderate burnout, and

7% of Stopped and 9% of Retained caregivers reported high burnout. Frequencies of those reporting low, moderate, and high did not significantly differ between groups at

2 2 Time 1, χF (1) = 5.13, p = .08, or at Time 2, χF (1) = 1.00, p = .67. Across the full sample, emotional exhaustion did decrease significantly over time, Z = -2.04, p < .05, though there were no significant decreases looking within job status groups. There were also no significant differences found between groups in frequencies of participants scoring in the low, moderate, or high ranges on each of the burnout subscales (see Table 6), nor in average scores (see Table 7).

Table 6. Frequencies of caregivers scoring in the low, moderate, and high range of burnout subscales on the Maslach Burnout Inventory

Stopped Retained 2 Severity N (%) N (%) χF P MBI-EE-T1 Low 18(55) 33(52) 2.19 .34 Medium 5(15) 17(27) High 10(30) 14(22) MBI-DP-T1 Low 20(61) 45(70) 2.57 .30 Medium 9(27) 10(16) High 4(12) 9(14) MBI-PA-T1 Low 11(33) 12(19) 4.03 .14 Medium 8(24) 14(22) High 14(42) 38(59) MBI-EE-T2 Low 19(58) 35(55) 0.31 .85 Medium 4(12) 10(16) High 6(18) 14(22) MBI-DP-T2 Low 19(58) 43(67) 1.11 .59 Medium 7(21) 9(14) High 3(9) 7(11) MBI-PA-T2 Low 9(27) 15(23) 0.38 .84 Medium 7(21) 15(23) High 13(39) 29(45) Key: DP = Depersonalization subscale; EE = Emotional exhaustion subscale;

MBI = Maslach Burnout Inventory; PA = Personal accomplishment subscale;

T1 = Time 1; T2 = Time 2

Table 7. Comparisons of job status groups’ burnout scores

Stopped Retained Mann- Whitney N M SD N M SD U p r T1 MBI-EE 33 20.18 14.60 64 18.27 12.51 1026 .82 -.02 T1 MBI-DP 33 5.76 5.22 64 5.53 6.38 961 .47 -.07 T1 MBI-PA 33 35.33 8.09 64 37.91 8.34 815 .07 -.19 T2 MBI-EE 28 15.79 10.34 59 16.69 13.11 810 .88 -.02 T2 MBI-DP 28 5.32 4.53 59 4.29 5.39 657 .12 -.17 T2 MBI-PA 28 36.14 8.09 59 36.98 8.49 769 .60 -.06 Key: DP = Depersonalization subscale; EE = Emotional exhaustion subscale;

MBI = Maslach Burnout Inventory; PA = Personal accomplishment subscale; T1

= Time 1; T2 = Time 2

Caregivers’ burnout comparisons to established norms. Compared to the

Maslach Burnout Inventory’s normative sample of human services professionals (n =

11,067), Stopped caregivers reported significantly lower Depersonalization at Time 1, t(11,098) = 2.89, p < .01, and 2, t (11,093) = 3.06, p < .01. They endorsed having similar levels of emotional exhaustion as the normative sample at Time 1, t(11,098) = 0.43, p

=.66, yet significantly lower emotional exhaustion than the normative sample once they had stopped working with their aggressive adult, t(11,093) = 2.56, p < .01. Personal accomplishment was not significantly different from the normative sample at Times 1, t(11,098) = .61, p = .55, or 2, t(11093) = 1.16, p = .25. Retained caregivers endorsed experiencing significantly lower emotional exhaustion, t(11,129) = 2.02, p < .05, lower depersonalization, t(11,129) = 4.33, p < .001, and higher personal accomplishment at

Time 1, t(11,129) = 3.73, p < .001 than the normative sample. These same relationships

held at Time 2, emotional exhaustion: t(11,124) = 3.06, p < .001, depersonalization: t(11,124) = 5.78, p < .001, personal accomplishment: t(11,125) = 2.58, p < .01.

Caregiver resilience

Comparing resilience scores between job status groups on the Brief Resilience

Scale, the Retained group reported higher resilience scores (Time 1: M = 3.69, SD = 0.78;

Time 2: M = 3.90, SD = 0.72) than the Stopped group (Time 1: M = 3.67, SD = 0.69;

Time 2: M = 3.67, SD = 0.81) at Time 1 and Time 2, though these differences were not significant, Time 1: U = 1,072, p = .80, r = .03; Time 2: U = 996, p = .21, r = .13. Given that the Brief Resilience Scale has a maximum score of six, both job status groups can be interpreted as self-reporting a moderate level of resilience on average. The Retained group showed a minor increase in resilience from Time 1 to Time 2 that was approaching significant with only a small effect of time, Z = 1.90, p = .057, r = .20. The Stopped group did not show a change in resilience from Time 1 to Time 2, Z = -.55, p = .58, r =

.06. There were also no significant differences between resilience total scores at Time 1 or Time 2 when using the Stopped-Aggression, Stopped-Other, and Retained groupings.

Validation samples used for the BRS included samples of undergraduate students (Smith et al., 2008). The two job status groups were compared to the validation sample of undergraduate students at Times 1 and 2. At Time 2, the Retained sample displayed significantly higher resilience than the validation sample of undergraduate students, t(190) = 3.45, p < .001, while the Stopped group did not, t(159) = 1.01, p = .31. Neither the Stopped, t(159) = 1.05, p = .30, nor the Retained groups, t(190) = 1.46, p = .15, displayed significantly different resilience levels from the validation sample at Time 1.

Hypothesis 1: Aggression severity was associated with higher burnout compared to measure norms and to low resilience scores in turned over caregivers.

First, descriptive statistics were calculated to examine group differences in severity of aggression subtypes on the A-SHARP. For group comparisons, Mann-

Whitney U tests were performed applying a significance level of p < .01 to account for multiple comparisons and calculating effect size r when significant differences were found. Wilcoxon signed-ranks tests evaluated whether aggression significantly decreased for the Retained group over time. To test Hypothesis 1, correlations were calculated between aggression subscale scores, burnout subscale scores from the Maslach Burnout

Inventory, and the overall resilience score from the Brief Resilience Scale. These correlations were calculated for both the Stopped and Retained groups.

Group comparisons. Of the five A-SHARP aggression subtypes, Time 1 Verbal

Aggression scores were significantly higher for the Stopped group (M = 18.38, SD =

7.67) than the Retained group (M = 12.65, SD = 8.89) with there being a small effect of group, U(88) = -2.80, p < .01, r = .24. Time 1 Covert Aggression scores were also higher for the Stopped Group (M = 10.60, SD = 5.79) than the Retained Group (M = 8.30, SD =

4.82), U(86) = -1.76, p < .05, r = .18, though this difference was no longer significant after applying Bonferroni corrections. The Retained group reported decreased aggression severity on all five subscales at Time 2 (see Table 8), though differences were only significant at p < .01 for Hostile Affect and Bullying scores.

Table 8. A-SHARP subscale comparisons between the Stopped and Retained groups and across time for the Retained group

Retained Time 1-

Group Time 2 Stopped Retained comparisons change A-SHARP subscale Time N M SD N M SD U P Z p Verbal 1 29 18.38 7.67 60 12.65 8.89 -2.80 ** -3.21 * 2 59 10.36 7.80 Physical 1 29 16.55 7.21 57 15.84 10.10 -0.56 .57 -2.45 * 2 55 12.42 8.78 Hostile 1 30 21.67 7.73 54 19.72 7.65 -3.07 affect -1.20 .23 ** 2 55 16.78 7.90 Covert 1 30 10.60 5.79 59 7.93 5.54 -2.25 .03 -2.89 * 2 58 6.60 4.35 Bullying 1 30 10.10 4.30 57 8.30 4.82 -1.76 .08 -2.51 ** 2 58 6.71 3.89 *p < .05, two-tailed, **p < .01, two-tailed

Correlation analyses. Time 1 and Time 2 aggression severity scores were strongly correlated for the full sample, rs = .53 - .80, p < .01. Correlations between aggression scores at Time 1 on the A-SHARP and burnout and resilience measures at

Time 1 and Time 2 were calculated for the job status groups using the two-group divide.

Looking at the Retained group only, Hostile Affect was moderately correlated with

Emotional Exhaustion at Time 2 (rs = .42, p < .01) and resilience (rs = -.30, p < .05).

Adult with DD bullying was moderately positively correlated with caregivers’ sense of personal accomplishment (rs = .33, p < .05). Caregiver resilience was strongly correlated with caregiver emotional exhaustion (rs = -.56, p < .01), moderately correlated with

depersonalization (rs = -.46, p < .01), and moderately correlated with personal accomplishment (rs = .30, p < .05). Neither verbal nor physical aggression were significantly correlated with burnout subscale scores or resilience.

In Stopped caregivers, adult with DD hostile affect was moderately correlated with emotional exhaustion (rs = .47, p < .05) and personal accomplishment (rs = .45, p <

.05). Covert aggression was moderately negatively correlated with depersonalization (rs =

-.46, p < .05). There were no significant relationships found in Stopped caregivers between caregiver resilience and adult aggression, nor between caregiver resilience and caregiver burnout.

These findings lend some support to Hypothesis 1, showing that in non-retained caregivers, aggression in the form of a hostile affect and covert aggression were moderately associated with caregiver burnout. In retained caregivers, hostile affect was moderately associated with emotional exhaustion and resilience; furthermore, moderate to strong relationships were found between caregiver burnout and caregiver resilience.

Analyses failed to show support for clear relationships between adult with DD physical and verbal aggression and caregiver burnout or resilience.

Hypothesis 2: Resilience mediated the relationship between physical health needs in adults demonstrating aggression and caregiver burnout.

A questionnaire was created as a measure of quality of physical health and number of physical health needs in adults with DD on whom caregiver participants were reporting, the Physical Health Questionnaire (PHQ). Item 1 on the PHQ asked for a rating of the adult’s quality of physical health on a five-point Likert scale from poor to

excellent, and item 2 presented a list of commonly identified physical health needs in adults with DD for raters to endorse whether the adult experienced that health need. As anticipated, items were negatively moderately inter-correlated (ie., higher physical health ratings were associated with fewer physical health needs), rS = -.33, p < .05, in the full sample.

On average, both the Stopped and Retained caregiver groups reported their adult to have between three and four physical health needs (Stopped M = 3.53, SD = 2.59;

Retained M = 3.95, SD = 2.69). There were no significant differences between groups in number of physical health symptoms reported, U = 900, p = .39, two-tailed, nor was there

2 a significant difference across groups in ratings of overall physical health, χF = 1.98, p =

.76. Caregivers in both groups most frequently endorsed their adult’s physical health as good (Both groups: 39%) followed by fair (Stopped: 30%, Retained: 25%), poor

(Stopped: 15%, Retained: 11%), neither healthy nor unhealthy (Stopped: 9%, Retained:

19%), and least frequently as excellent (Both groups: 6%). Significantly more adults in the Stopped group required assistance with eating, otherwise there were no significant differences between groups in rates of endorsed physical health needs (see Table 9).

Table 9. Caregiver groups’ ratings of adults with DD’s physical health needs

Stopped Retained χ 2 p Physical health need N % N % F Lifting and moving 3 9 11 17 1.16 .37 Monitoring for falls 13 39 17 27 1.68 .25 Monitoring for breathing and swallowing problems 9 27 10 16 1.88 .19 Dental care 15 46 21 33 1.49 .27 Diet monitoring 16 49 39 61 1.38 .28 Injections 4 12 5 8 0.48 .48 Toileting supports 15 46 19 30 2.38 .18 Eating 5 15 2 3 4.70 * Daily medications 26 79 55 86 0.81 .40 Help with seeing, hearing, or feeling to prevent harm or injury 14 42 14 22 4.48 .06 Supports in exercises to promote joint or muscle functioning 6 18 15 23 0.36 .61 Care for injuries 14 42 17 27 2.52 .17 Care for diseases 2 6 12 19 2.93 .13 Other 3 9 5 8 0.04 1.00 *p < .05, two-tailed

Examining individual areas of physical health needs, the most frequently endorsed needs were support with daily medications (79 – 86%), diet-related health concerns such as diabetes or obesity (49 – 61%), and poor dental health (33 – 46%).

Correlation analyses. In the full sample, correlations between variables of the proposed mediation model were explored prior to testing mediation effects (see Table

10). Adult physical health ratings and number of physical health needs were significantly negatively correlated with verbal aggression. Adult physical health rating was moderately negatively correlated with emotional exhaustion and slightly negatively correlated with depersonalization. Caregiver resilience at Time 2 was slightly positively correlated with adult physical health rating, moderately negatively correlated with both emotional exhaustion and depersonalization.

Table 10 Spearman’s BCa correlations between adult with DD physical health, aggression, caregiver resilience, and caregiver

burnout

Measure 2 3 4 5 6 7 8 9

1 Physical health rating -.28* -.23* .11 .20 .23* -.29** -.27* .02

2 Number of physical health needs -.33** .15 -.10 -.08 .05 -.08 .01

3 T1 VATO total .004 -.21 -.12 .07 .04 .04

4 T1 PATO total .05 .10 .04 -.08 -.09

5 T1 BRS Total score .72** -.39** -.30** .17

90 ** ** 6 T2 BRS total score -.40 -.36 .21

7 T2 Emotional exhaustion .54** -.01

8 T2 Depersonalization -.30**

9 T2 Personal accomplishment * p < .05, two-tailed. **p < .01, two-tailed.

Mediation analyses. First, the mediating effect of caregiver resilience on the relationship between adult with DD physical health and caregiver burnout was tested.

Then, the additional moderating effect of aggression on the relationship between adult physical health and caregiver resilience was tested. The conceptual diagram of this relationship is shown in Figure 2.

Aggression Resilience

Physical Burnout health

Figure 2. A conceptual diagram of the hypothesized moderated mediation relationship between adult with DD aggression, adult with DD physical health, caregiver resilience, and caregiver burnout

For mediation analyses, path coefficients between the dependent variable and the mediator (a), the mediator variable and the dependent variable (b), and the direct effect of the independent variable on the dependent variable (c) are reported, along with their significance level, the coefficient value for the mediating effect (ab), and the 95% bias- corrected and accelerated bootstrapped confidence interval.

The relationship was considered significantly mediated if the confidence interval of the coefficient value excluded zero (Hayes, 2013). Hayes (2013) recommended reporting coefficient values to the third decimal place to be more precise.

Better adult physical health was associated with higher caregiver resilience (a =

.138, p < .05). Caregivers who self-reported higher resilience experienced less emotional exhaustion at Time 2 (b = -5.354, p < .01) and better adult with DD physical health was associated with less caregiver emotional exhaustion (c' = -2.68, p < .01). Resilience significantly mediated a negative relationship between adult with DD physical health and caregiver emotional exhaustion (ab = -0.738), shown by a 95% BCa confidence interval that excluded zero (-1.890 to -0.094). When caregiver resilience was higher, caregivers also reported a lower sense of depersonalization (b = -1.467, p < .05) and caregivers displayed lower depersonalization when adults with DD had better physical health (c' = -

0.964, p < .05). Resilience was found to significantly mediate the effect of adult physical health on depersonalization (ab = -0.202, 95% BCa CI = -0.586 to -0.018). Higher caregiver resilience was also found in caregivers with a greater sense of personal accomplishment (b = 2.415, p = .05). Resilience significantly mediated the relationship between adult physical health and caregivers' sense of personal accomplishment (ab =

.333) as indicated by a 95% BCa confidence interval entirely above zero (0.002 to 1.132).

These results support the hypothesis that caregiver resilience significantly mediated the effect of the physical health of adults with DD on caregiver burnout.

To investigate whether aggression severity moderated this significant mediation relationship, verbal and physical aggression severity were entered into separate models to

determine their effect on the existing mediating relationship. Verbal aggression was not found to significantly moderate, or influence, the effect of adult with DD physical health on caregiver resilience, interaction = -0.002, t(82) = -0.26, p = .806. Physical aggression also did not significantly moderate the already mediated relationship between physical health, resilience, and burnout, interaction = 0.01, t(79) = 1.75, p = .790. Aggression therefore was not shown to have an effect over this relationship.

Hypothesis 3. Caregiver resilience mediated the positive relationship between mental health needs in adults demonstrating aggression and caregiver burnout.

The conceptual model for this hypothesis is shown in Figure 3.

Aggression Caregiver resilience

Adult mental Caregiver health Burnout

Figure 3. A conceptual diagram of the hypothesized moderated mediation relationship between adult aggression, adult mental health, caregiver resilience, and caregiver burnout.

Mental health, as measured by the organic disorder, affective/neurotic disorder, and psychotic disorder subscales of the PAS-ADD, was hypothesized to directly affect

caregiver burnout, caregiver resilience was hypothesized to mediate this direct relationship, and verbal and physical aggression were anticipated to moderate, or influence, the strength of the effect of adult mental health on caregiver resilience.

Examining group differences, the job status groups were compared on mental health subscale scores at Time 1 from the PAS-ADD: number of stressful life events having occurred to the aggressive adult with DD in the 3 months leading up to Time 1, number of organic disorder symptoms, number of affective/neurotic disorder symptoms, and number of psychotic disorder symptoms. Though the Stopped group scored higher on all

PAS-ADD subscales, there were no significant differences between the Stopped and

Retained caregiver groups in the mental health of adults with DD on whom they reported.

On average, adults from both the Stopped group (M = 7.50, SD = 4.72) and the Retained group (M = 7.23, SD = 5.54) scored above threshold for an affective or neurotic disorder,

Mann-Whitney U = 566, p = .86. Adults from the Stopped group (M = 3.85, SD = 2.14) and Retained group (M = 3.61, SD = 2.32) scored well below cutoff for a possible organic condition, Mann-Whitney U = 718, p = .86, and approaching cutoff for a psychotic disorder, Stopped: M = 1.43, SD = 1.62; Retained: M = 1.26, SD = 1.42, Mann-Whitney

U = 1,007, p = .40. On average, adults from the Stopped caregivers group experienced

1.70 recent stressors (SD = 2.28), and adults from the Retained caregivers group experienced on average 1.03 recent stressors (SD = 1.26), Mann-Whitney U = 1,958, p =

.43.

Looking at individual differences, 39% of adults whose caregivers had stopped working with them and 52% of adults with Retained caregivers scored above cutoff for

2 an organic disorder, χF = 1.29, p = .29. On the affective/neurotic disorder scale, 70% of

adults whose caregivers stopped working with them and 66% of adults with retained caregivers scored above the cutoff for the disorder, though rates were not significantly

2 different between groups, χF = .16, p = .82. On the psychotic disorder subscale, 42% of the adults whose caregivers stopped working with them and 45% of adults with retained caregivers scored above the cutoff for the disorder, though again rates were not

2 significantly different between groups, χF = .07, p = .83.

Correlation analyses. Table 11 displays correlations for the full sample. Severity of psychotic symptoms displayed by adults with DD was slightly correlated with caregiver depersonalization.

Table 11. Spearman’s BCa correlations between adult with DD mental health, adult with

DD aggression, caregiver resilience, and caregiver burnout

Measures 2 3 4 5 6 7 8 9 10 11 1 Total recent .04 -.02 -.04 .16 -.05 .11 -.12 .17 .12 -.01 stressors 2 Organic d/o .60** .37** .14 .17 -.09 -.08 -.08 .09 -.14 sx 3 Affective .42** .12 .12 -.23* -.10 .05 .11 -.10 d/o sx 4 Psychotic .17 -.09 -.14 -.08 -.01 .23* -.08 d/o sx 5 Verbal AGG .004 -.21 -.10 .05 .02 .06 6 Physical .05 .10 .05 -.07 -.09 AGG 7 T1 Res .71** -.38** -.30** .18 8 T2 Res -.41** -.37** .23* 9 T2 MBI-EE .55** -.04 10 T2 MBI-DP - .31** 11 T2 MBI-PA *p < .05, two-tailed. **p < .01, two-tailed. Key: AGG = aggression; d/o = disorder; MBI-EE = MBI Emotional Exhaustion subscale; MBI-DP = Depersonalization subscale; MBI-PA = Personal accomplishment subscale

Severity of affective symptoms in adults with DD was slightly negatively correlated with caregiver resilience. Neither physical nor verbal aggression were significantly correlated with any other variable in the hypothesized model. Both emotional exhaustion and depersonalization were moderately negatively correlated with caregiver resilience at

Times 1 and 2, while caregiver personal accomplishment was also slightly correlated with caregiver resilience at Time 2.

Mediation analyses. Organic disorder symptoms were not shown to be related to resilience in caregivers (a = -0.013, p = .717) nor caregivers’ emotional exhaustion (c’ = -

0.388, p = .470), depersonalization (c’ = 0.213, p = .379), or personal accomplishment (c’

= -0.588, p = .126). Affective/neurotic disorder symptoms was also not found to significantly affect caregiver resilience (a = -0.022, p = .182), emotional exhaustion (c’ =

-0.247, p = .325), depersonalization (c’ = 0.064, p = .561), or personal accomplishment

(c’ = -0.212, p = .239). Lastly, psychotic disorder symptoms were not found to be significantly related to caregiver resilience (a = -0.063, p = .252), emotional exhaustion

(c’ = -0.397, p = .645), depersonalization (c’ = 0.592, p = .121), or personal accomplishment (c’ = -0.292, p = .637). It can therefore be concluded that caregiver resilience did not significantly mediate the relationship between adult with DD mental health and caregiver burnout, nor that this relationship is directly influenced by aggression severity.

Due to the absence of significant correlations between variables anticipated to comprise the hypothesized mediated relationship; namely, verbal or physical aggression, resilience, mental health symptoms, and burnout, it was anticipated that significant moderation relationships would not be found. This was indeed the case, therefore further moderated mediation were not tested.

Hypothesis 4: Caregiver retention was predicted by lower levels of mental and physical health concerns and higher levels of proactive coping, mindfulness, resilience, and social support.

Initial group comparisons on subscales of the Brief COPE, Areas of Worklife

Survey, and Kentucky Inventory of Mindfulness Skills were calculated by performing

Mann-Whitney U tests with Bonferroni corrections. On the Areas of Worklife Survey, the

Retained group had higher scores on all subscales, though they only scored significantly higher than the Stopped group on the Fairness subscale (Retained M = 2.93, SD = .78;

Stopped: M = 3.49, SD = .84), U = 2.69, p = .007. There were no significant differences between groups on the Brief COPE or Kentucky Inventory of Mindfulness Skills subscales. A composite Proactive coping score was calculated by averaging subscale scores from the Brief COPE that were previously found to load onto the same factor

(Carver, 1997), specifically, Active Coping, Planning, Positive Reframing, and one item from the Acceptance subscale.

Correlation analyses. Point-biserial correlations (rpb) were calculated between retention, treated as a discrete dichotomous outcome variable, and hypothesized predictor variables measured at Time 1: caregiver measures of proactive coping, mindfulness, burnout, social support, and resilience, as well as adult measures of physical health, mental health, and aggression severity (see Table 12).

rpb with Predictors retention Verbal aggression -.22 Physical aggression -.09 Hostile affect -.08 Covert aggression -.18 Bullying -.03 Stressful life events -.31 Organic symptom severity -.19 Affective disorder symptoms -.01 Psychotic disorder symptoms .18 Physical health rating .03 Number of physical health needs .14 Emotional exhaustion -.10 Depersonalization -.15 Personal accomplishment .32 Resilience -.02 Proactive coping -.10 Mindfulness .05 Social support .07 All correlations are significant at p < .01

The strength and direction of correlations between retention and Time 2 measures were the same, and are therefore not reported. Retention was slightly correlated with all variables except Personal Accomplishment, with which retention was moderately correlated, rpb = .39, p < .01. Retention was only slightly negatively correlated with

aggression subscale severities. It was moderately negatively correlated with recent stressors on the PAS-ADD and positively moderately correlated with personal accomplishment at Times 1 and 2. Retention was only slightly correlated with all other variables.

Hypothesized predictor model of retention. Due to the weak correlation sizes (r

< .30) between retention and all hypothesized predictor variables except Personal

Accomplishment, rpb = .31, and number of recent stressful life events experienced by the adult with DD, rpb = .31 it was expected that all variables included into one model would not result in a significant predictive model of retention. To confirm this, a binary logistic regression with BCa bootstrapped confidence intervals using 1,000 resamples was performed to identify predictors of caregiver retention (yes versus no), entering Time 1 measures of burnout, verbal and physical aggression, mental health subscales, number of physical health needs, resilience, proactive coping, mindfulness, and social support.

Verbal and physical aggression severity scores only were included– other aggression subscales were excluded due to evidence of their multicollinearity (rs > .70) with the verbal aggression subscale. This model was not statistically significant, χ2(11) = 9.49, p =

.58. It explained only 24.8% (Nagelkerke R2) of variance in retention and correctly classified 79% of cases. A higher sense of personal accomplishment was positively associated with job retention at Time 2, B = 0.09, Exp(B) = 1.10, p < .05. These results failed to support Hypothesis 4, suggesting that hypothesized predictors other than personal accomplishment did not significantly predict job retention in caregivers of aggressive adults.

Adult with DD predictors of retention. To compare alternative models of

retention, predictors were divided into groups to evaluate competing models: one model

included verbal aggression, physical aggression, and adult physical health as predictors of

caregiver retention; the second model including verbal aggression, physical aggression,

and adult mental health as predictors of caregiver retention. The first model (adult verbal

aggression, physical aggression, and physical health) was not a significant predictor of

retention, χ2(4) = 6.27, p = .18, explaining only 9% of variance in retention at Time 2 and

correctly classifying 66% of caregivers. None of the variables were significant predictors

(see Table 13).

Table 13. Regression results predicting caregiver retention from adult with DD

aggression and physical health (row 1) and aggression and mental health (row 2).

BCa 95% Confidence Interval Adult with DD predictors B Exp(B) p Lower Upper Physical health Verbal aggression -0.05 0.95 0.15 -0.13 0.02 Physical aggression -0.01 0.99 0.80 -0.07 0.05 Physical health rating 0.20 1.22 0.41 -0.29 0.82 Number of physical health needs 0.08 1.08 0.44 -0.15 0.41 Constant 0.62 1.86 0.65 -2.35 3.54 Mental health Verbal aggression -0.07 0.93 * -0.15 -0.02 Physical aggression 0.01 1.01 0.82 -0.05 0.07 Total recent stressors -0.12 0.89 0.37 -0.39 0.16 Organic symptom severity -0.14 0.87 0.27 -0.41 0.10 Affective/neurotic symptom severity 0.06 1.06 0.46 -0.11 0.23 Psychotic symptom severity 0.22 1.25 0.29 -0.25 1.02

The second model evaluated included adult verbal aggression, adult physical aggression, total recent life events encountered by the adult, and symptom totals on the Organic disorder, Affective disorder, and Psychotic disorder subscales of the PAS-ADD as predictors of caregiver retention. The resulting model was also a non-significant predictor of caregiver retention, χ2(6) = 10.21, p = .12, accounting for 14% of variance in retention

(Nagelkerke’s R2) and correctly classifying 70% of participants. Verbal aggression emerged as the only significant predictor of retention in this model.

Work environment predictors of retention. Individual scores from subscales of the Areas of Worklife Survey were included as measures of extrinsic variables in the first model (see Table 14). Measures of adult with DD verbal and physical aggression were also included in these models. This model was also a non-significant predictor of retention χ2(8) = 14.53, p = .07, explaining 21% of variance in job retention

(Nagelkerke's R2) and correctly classifying 72% of participants. In this model, only verbal aggression severity and fairness in the workplace were found to be significant predictors. Consequently, a second model was run including only these variables. This resulted in a significant model, χ2(2) = 8.48, p < .05, accounting for 12% of variance in retention (Nagelkerke's R2) and correctly predicting 72% of caregivers' job status at Time

2. In this model, only fairness continued to be a significant predictor.

Table 14. Regression coefficients for a binary logistic model of caregiver retention, entering aggression and work life variables as predictors

BCa 95% Confidence Interval Workplace predictors B Exp(B) p Lower Upper Step 1 Verbal aggression -0.07 0.94 * -0.15 -0.02 Physical aggression 0.01 1.01 0.73 -0.08 0.11 Workload -0.22 0.80 0.53 -1.23 0.63 Control 0.24 1.27 0.54 -0.72 1.23 Reward -0.23 0.79 0.64 -1.35 0.72 Social support -0.51 0.60 0.33 -1.90 0.64 Fairness 1.28 3.60 ** -0.34 4.43 Values -0.58 0.56 0.18 -1.51 0.02 Constant 2.07 7.93 0.31 -2.84 8.04 Step 2 Verbal aggression -0.05 0.95 0.07 -0.12 -0.01 Fairness 0.51 1.66 * 0.05 1.10 Constant 0.01 1.01 0.99 -2.38 2.62

In addition to work environment, pay and work benefits were explored as predictors.

These variables did not significantly predict retention in caregivers who face physical or verbal aggression, χ2(4) = 8.01, p = .09 (Nagelkerke’s R2 = 11.4%), though 67% of participants were classified correctly by this model. By including these variables into a model, only verbal aggression emerged as significant, B = -.07, Exp(B)=.93, p < .05,

95% BCa Confidence Interval = -0.13 – -0.03.

Exposure predictors of retention. Exploring the role of exposure to the adult as predictors of job retention, hours per week worked with the aggressive adult, hours per week worked in that job in total, and length of time knowing the aggressive adults were entered into a separate model of caregiver retention (see Table 15).

Table 15. Regression coefficients for a binary logistic regression model predicting caregiver retention with adult with DD aggression and measures of caregiver exposure to the adult

BCa 95% CI

Exposure predictors B Exp(B) P Lower Upper Verbal aggression -0.07 0.93 * -0.14 -0.04 Physical aggression 0.00 1.00 0.91 -0.09 0.06 Weekly hours spent with adult Less than 10 hours -0.46 0.63 0.58 -2.79 1.39 10 - 20 hours 0.15 1.16 0.85 -19.13 2.29 20 - 40 hours -0.18 0.83 0.79 -1.84 1.21 Length of time knowing adult 0.25 1.29 * 0.01 1.13 Hours per week worked at job 10 - 20 hours -0.94 0.39 0.23 -23.79 21.16 20 - 40 hours -0.30 0.74 0.58 -1.56 1.01 Constant 1.43 4.20 0.12 -1.38 22.49 Exposure to the aggressive adult as a model significantly predicted retention, χ2 (8) =

15.73, p < .05, explaining 22% of variance and correctly classifying 71% of participants

(Nagelkerke's R2). In the model, length of time knowing the adult and verbal aggression emerged as significant predictors.

Coping predictors of retention. Proactive coping and related positive coping styles were entered with verbal and physical aggression into a coping model of retention . This model did not significantly predict retention, χ2(6) = 10.96, p =.09, explaining only 22% of the variance and correctly categorizing 83% of caregivers. In this model, verbal aggression, active coping, and planning emerged as significant predictors. Recalculating this model and including only significant predictors from step one: verbal aggression, active coping, and planning, resulted in another significant model, χ2(3) = 14.23, p < .01, accounting for

19% of variance in retention (Nagelkerke's R2) and correctly predicting job status for

69% of caregivers (see Table 16). In a separate model of resilience and aggression in predicting retention, the resulting model was non-significant, χ2(3) = 5.67, p = .13, accounting for 8% of variance in retention (Nagelkerke’s R2) and correctly categorizing

64% of caregivers.

Table 16. Regression coefficients for a binary logistic regression model of caregiver retention predicted by adult with DD aggression and caregiver coping styles

BCa 95% CI Coping predictors B Exp(B) p Lower Upper Step 1 Verbal aggression -0.10 0.91 *** -0.17 -0.07 Physical aggression 0.01 1.01 0.79 -0.07 0.09 Active coping 0.56 1.75 ** -0.07 2.34 Positive reframing 0.07 1.07 0.73 -0.50 0.69 Planning -0.43 0.65 * -0.86 -0.16 Acceptance -0.26 0.77 0.11 -0.66 0.01 Constant 1.74 5.71 0.14 -1.52 6.95 Step 2 Verbal aggression -0.08 0.92 ** -0.17 -0.03 Active coping 0.50 1.65 *** 0.11 1.07 Planning -0.38 0.69 * -0.77 -0.11 Constant 1.38 3.99 0.09 -0.25 3.67

Hypothesis 5. Higher burnout was associated with frequency of aggression being intrinsically attributed.

The provocation subscale scores from the A-SHARP were used as measures of intrinsic (proactive) versus extrinsic (reactive) attributions of aggression. First, average

provocation scores from the A-SHARP subscales were compared against means from the validation sample (Matlock & Aman, 2011). The provocation subscales of the A-SHARP scored items negatively (-1 or -2) if respondents indicated that the aggressive behavior occurred reactively, provoked by environmental events, and positively (+1 or +2) if the aggressive behavior occurred proactively, unprovoked by environmental events but rather to achieve a specific goal. Of interest was to determine whether caregiver respondents’ interpretation of adult with DD aggressive behavior as either reactive or proactive influenced burnout and other cognitive responses to adult with DD aggression.

The full sample and subgroup averages were all positively oriented, meaning that caregivers mostly viewed aggression subtypes as occurring proactively, rather than being provoked by environmental events or as a reaction . Similarly, the A-SHARP subscales’ validation norms were all proactively oriented except for the Hostile Affect subscale, which was reactively oriented. On the Verbal Aggression Provocation scale, 82% of the full sample, 78% of the Retained group and 91% of the Stopped group scored above the mean. The prevalence of elevated provocation scores were not significantly different

2 across job status groups, χF = 2.29, p = .16. On the Physical Aggression provocation subscale, 58% of the full sample, 59% of the Retained group and 57% of the Stopped group scored above the normative mean, meaning that caregivers generally perceived their adult with DD as engaging in physical aggression for specific goal-oriented purposes as opposed to reactively for a little over half the sample. Again, there were no significant differences between subgroups in frequency of elevated provocation scores,

2 χF = 0.41, p = 1.00. Zero adults with DD were indicated as having provocation scores above the normative mean on the Hostile Affect, Covert Aggression, or Bullying

subscales. Comparing provocation scores between the retained versus stopped groups, there were no significant differences between subscale scores, Verbal aggression: U =

873, p = .24, Physical aggression: U = 875, p = .75, Covert aggression: U = 1,159, p =

.148, Bullying: U = 1,005, p = .696; Hostile affect: U = 894, p = .50 (see Table 17).

Table 17. Full sample and subgroup descriptive information for A-SHARP provocation subscale scores

Provocation subscale Retained group Stopped group Full sample

Verbal aggression Mean = 2.77 Mean = 4.27 Mean = 3.29 SD = 6.16 SD = 7.43 SD = 6.63

Physical aggression Mean = 4.95 Mean = 4.43 Mean = 4.77 SD = 9.97 SD = 11.39 SD = 10.42

Hostile affect Mean = 0.64 Mean = 0.97 Mean = 0.75 SD = 2.11 SD = 2.49 SD = 2.24

Covert aggression Mean = 0.41 Mean = 0.09 Mean = 0.31 SD = 0.87 SD = 0.86 SD = 0.88

Bullying Mean = 1.20 Mean = 1.42 Mean = 1.28 SD = 1.84 SD = 2.59 SD = 2.12

Correlation analyses. Point biserial correlations between retention as a dichotomous variable, A-SHARP aggression severity and A-SHARP provocation subscales were calculated. Retention was not significantly correlated with any A-SHARP score. Verbal and Physical Aggression Provocation scores were strongly correlated, suggesting possible multi-collinearity. Hostile Affect Provocation was also strongly

correlated with Verbal and Physical Aggression Provocation scores. Bullying

Provocation was strongly correlated with Verbal and Physical Aggression Provocation and moderately correlated with Hostile affect and Covert Aggression provocation scores

(see Table 18).

Table 18. Point biserial correlations (row 1) between caregiver retention and correlations between A-SHARP severity and provocation subscale scores (rows 2 through 11)

A-SHARP subscale 2 3 4 5 6 7 8 9 10 11 1 Retention -.17 -.10 -.04 .03 .01 .02 -.12 .23 -.05 .01

2 Verbal AGG sev .42** .06 .15 .72** .28* .70** -.12 .68** .32**

3 Verbal AGG .05 .72** .18 .79** .22 .21 .21 .64** prov 4 Physical AGG .33** .13 .02 .18 .01 .35** .07 sev 5 Physical AGG .01 .62** .08 .27* .05 .56** prov 6 Hostile affect .06 .67** -.14 .69** .16 sev 7 Hostile affect .03 .17 .05 .44** prov 8 Covert AGG sev .07 .62** .20

9 Covert AGG -.10 .28* prov 10 Bullying sev .39**

11 Bullying prov * p <.05, two-tailed. ** p < .01, two -tailed. Key: AGG = aggression; prov = provocation; sev = severity

Regression analyses. Binary logistic regression analyses were then performed to determine the extent to which provocation scores predicted caregiver job status at Time 2, entering Verbal, Physical and Covert Aggression severity in block 1 to control for aggression severity effects and Provocation scores for verbal, physical, and covert aggression in block 2 (see Table 19).

Table 19. Regression coefficients for A-SHARP aggression severity and provocation scores in a model predicting caregiver retention

BCa 95% CI Predictor B Exp(B) p Lower Upper Verbal aggression severity -0.02 0.99 .72 -0.11 0.06 Physical aggression severity 0.001 1.00 .97 -0.08 0.08 Covert aggression severity -0.03 0.97 .63 -0.17 0.11 Verbal aggression provocation -0.07 0.93 .25 -0.22 0.08 Physical aggression provocation 0.02 1.02 .59 -0.08 0.11 Covert aggression provocation 0.76 2.14 * -0.06 2.44 Constant 1.15 3.15 .11 -0.47 3.34

Due to Verbal, Physical, and Covert aggression provocation scores being strongly correlated with Bullying and Hostile affect, the latter two variables were not entered to control for multicollinearity. The resulting model was non-significant, χ2 = 5.74, p = .13, though it correctly classified 65% of caregivers and accounted for 14% of variance

(Nagelkerke’s R2). The Covert Aggression Provocation score emerged as the only significant predictor of group membership. In sum, only the extent to which covert

aggression was attributed as proactive or intrinsically attributed appeared to significantly predict caregiver retention, lending some but not complete support for hypothesis 5.

Overall predictors of retention. To conclude, all significant predictors of retention identified through analyses testing hypotheses 4 and 5 were entered into a final binary logistic regression of caregiver retention: adult verbal aggression severity, covert aggression provocation severity, fairness in the workplace, length of time knowing the aggressive adult, active coping, and planning as a coping style. The resulting model was significant, χ2(6) = 22.76, p < .001, explaining 31% of variance (Nagelkerke’s R2) and correctly classifying the job status for 75% of caregivers (see Table 20).

Table 20. Regression coefficients for variables included in the final predictive model of caregiver retention

BCa 95% CI B Exp(B) p Lower Upper Verbal aggression severity -0.08 0.92 * -0.18 -0.02 Covert aggression provocation 0.51 1.66 0.16 -0.47 2.20 Fairness at work 0.63 1.87 * -0.16 2.15 Length of time knowing adult 0.22 1.25 * -0.02 1.34 Active coping 0.48 1.61 * -0.05 1.50 Planning coping -0.30 0.74 0.14 -0.82 0.08 Constant -1.50 0.22 0.34 -4.87 0.68

Significance values of predictors in the model showed that verbal aggression severity, fairness in the workplace, length of time knowing the adult with DD, and active coping style emerged as significant predictors; however, bias-corrected and bootstrapped

confidence intervals using 1,000 resamples resulted in only verbal aggression severity emerging as significant (see Table 20).

Hypothesis 6. Proactive coping mediated a positive relationship between aggression severity and burnout in retained caregivers.

Simple mediation analyses were performed to evaluate whether proactive coping explained the relationship between verbal or physical aggression and caregiver burnout, anticipating that a negative relationship would be found between aggression and burnout when proactive coping is implemented. There was no evidence of a mediating effect of proactive coping on the relationships between verbal aggression and physical aggression on each burnout subscale. The role of maladaptive forms of coping was then explored as negative coping styles may also positively mediate the effects of aggression on burnout, however none of the maladaptive coping styles were found to significantly mediate the aggression – burnout relationship either.

Since coping did not account for the relationship between aggression and burnout, follow-up analyses were performed to determine whether coping at least influences, or moderates, this relationship. Proactive coping was found to moderate the relationship between experiencing physical aggression from an adult with DD and personal accomplishment, accounting for 11.43% of variability in personal accomplishment score,

F(1,75) = 4.476, p < .05, but not emotional exhaustion F(1,75) = .132, p = .717, or depersonalization F(1,75) = 0.054, p = .817. Neyman-Johnson significance regions were calculated to determine the degree of proactive coping at which it significantly moderated the effect of physical aggression on personal accomplishment. While physical aggression

was shown to independently predict lower personal accomplishment, when caregivers engaged in low levels of proactive coping (cutoff = 5.17), it had a protective effect on personal accomplishment. Forty nine percent of caregivers engaged in advantageous levels of proactive coping (scores below this cutoff). Hi0gher proactive coping scores were not found to significantly moderate the effect physical aggression on personal accomplishment. Proactive coping was not found to moderate the relationship between verbal aggression and burnout subscale scores. We then explored whether maladaptive coping styles moderated the aggression-burnout relationship. Self-distracting was found to moderate the effect of verbal aggression on caregiver emotional exhaustion, F(1,80) =

4.33, p < .05.

Hypothesis 7. Mindfulness mediated a positive relationship between aggression severity and burnout in retained caregivers.

A mindfulness composite score was created by averaging the four mindfulness subscale scores from the Kentucky Inventory of Mindfulness Scores. Correlation analyses using data from the full sample showed that mindfulness at Time 1 was moderately negatively correlated with emotional exhaustion, rs = -.45, p < .01, depersonalization, rs = -.39, p < 01, and positively correlated with personal accomplishment, rs = .45, p < .01. Mindfulness was also slightly negatively correlated with verbal aggression, rs = -.29, p < .05, but not significantly correlated with physical aggression.

Mediation analyses found support for mindfulness mediating a negative relationship between verbal aggression and caregiver sense of personal accomplishment

(ab = -.269, 95% CI = -1.827 – -.016), suggesting that mindfulness accounts for an inverse relationship between higher verbal aggression and lower caregiver sense of personal accomplishment. Mindfulness was not found to significantly mediate the relationships between verbal aggression and emotional exhaustion (ab = -.129, 95% BCa

CI = -1.45 - .15), verbal aggression and depersonalization (ab = -.193, 95% BCa CI = -

1.64 -.05), physical aggression and emotional exhaustion (ab = -.051, 95% BCa CI = -

.838 - .122), physical aggression and depersonalization (ab = -.101, 95% BCa CI = -.975

- .045), or physical aggression and personal accomplishment (ab = -.161, 95% BCa CI = -

1.113 - .024). These results partially supported the hypothesis that mindfulness mediated the impact of adult verbal aggression on caregivers’ sense of personal accomplishment only.

Moderation analyses using Neyman-Johnson significance level tests were next performed to test whether mindfulness significantly moderated the effect of verbal or physical aggression separately on burnout subscale scores. Mindfulness did not significantly moderate the relationship between verbal aggression and emotional exhaustion, F(1,74) = 1.059, p = .307, depersonalization, F(1,74) = 1.176, p = .282, or personal accomplishment, F(1,74) = .831, p = .365. Mindfulness also did not significantly moderate the relationship between physical aggression and emotional exhaustion, F(1,71) = .282, p = .597, depersonalization, F(1,71) = .225, p = .637, or personal accomplishment, F(1,71) = .236, p = .629.

Hypothesis 8. Social support moderated a weaker relationship between aggression severity and burnout in retained caregivers.

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Social support in the workplace was measured by the Community subscale of the

Areas of Worklife Survey, and represented caregivers’ perceived level of support received from both colleagues and supervisors in the workplace. Correlation analyses

(see Table 21) found that social support was moderately negatively associated with emotional exhaustion and slightly negatively associated with depersonalization, moderately negatively correlated with hostile affect and slightly negatively correlated with verbal aggression. Retained caregivers (M = 3.66, SD = 0.66) and Stopped caregivers (M = 3.56, SD = 0.75) reported receiving equivalent social support in the workplace, U = 927, Z = -.75, p = .45.

Table 21. Spearman’s BCa bootstrapped correlations between social support, burnout, and aggression subscales

Measure 2 3 4 5 6

1. Social support -.39** -.27* .09 -.23* -.05

2. Emotional exhaustion .62** -.04 .07 .04

3. Depersonalization -.25* .03 -.04

4. Personal accomplishment .14 -.16

5. Verbal aggression -.03

6. Physical aggression *p < .05, two-tailed; **p < .01, two-tailed.

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Moderation analyses were performed, testing whether social support at the workplace moderated the effects of adult with DD verbal and physical aggression on caregiver burnout. Social support was shown to moderate the effect of verbal aggression on emotional exhaustion, F(1,81) = 4.083, p < .05, depersonalization, F(1,81) = 3.696, p

< .05, and personal accomplishment, F(1,81) = 4.151, p < .05. Social support scores above 3 were found to moderate the effect of verbal aggression on emotional exhaustion, below 3 were found to moderate the effect of verbal aggression on depersonalization, and at or above 3 were found to moderate the effect of verbal aggression on personal accomplishment. Scores at or below 3 were indicative of low or a lack of social support

(i.e., 1 = Strongly disagree, 2 = Disagree, 3 = Hard to decide). Social support was not found to moderate the effect of physical aggression on burnout. These results partially support hypothesis 8, showing that lacking social support in the workplace influenced or moderated the effect experiencing verbal aggression from an adult care recipient on caregiver burnout, yet it did not influence the effect of physical aggression on caregiver burnout.

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Chapter 5: Discussion

The current study investigated predictors of paid caregiver psychological outcomes resulting from working with an adult with DD who exhibited verbal or physical aggression and varying mental and physical health needs. Additionally, it sought to explore how positive approaches to coping, specifically proactive coping and mindfulness, and positive caregiver resources, namely social support and workplace factors, impacted caregiver burnout and resilience over time and likelihood of job retention. This project was motivated by the high rate of turnover in the field of direct support providers who provide care to adults with DD and problem behavior. High turnover creates major barriers to the successful implementation of behavioral supports for adults with DD and limits the ability to make and maintain long-lasting change, as new caregivers require greater training and monitoring, which in turn negatively impacts behavioral treatment integrity.

Caregiver retention. The current study found that 63% of caregivers were still working with the aggressive adult with DD at the three-month follow-up and 37% had left, which is similar to the estimated 34% turnover rate previously found in Ohio (Ejaz et al., 2015). When asked about reasons for leaving one’s job, over half reported that they left their positions due to the severity of the adult with DD’s aggressive behavior, while other reported reasons included scheduling issues and being involuntarily moved by supervisors. Almost one quarter of retained caregivers wanted to stop working with the

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adult and likely had intentions to do so over the following months. In contrast, another one quarter continued to work with the adult due to the severity of aggression having decreased or the caregiver finding the work itself rewarding.

Neither demographic nor job characteristics significantly differentiated caregivers who were retained versus turned over at follow-up. The sample was primarily female and had varying marital statuses and years of experience working in the DD field. Caregivers primarily achieved some college or vocational training after high school. Non-significant differences were found between retained and turned over caregivers based on years of education, which contradicted previous findings (Ohio Alliance for Direct Support

Professionals, 2015). They mostly earned between $10 and $12 per hour, which was consistent with the findings of a previous survey of caregiver turnover in Ohio (Ejaz et al., 2013). Though pay was low, over half of caregivers received paid sick leave and paid holidays, which are higher rates than previous estimates (Ejaz et al., 2013).

Approximately half of caregivers worked over 40 hours per week in their job with the adult with DD and worked a second job.

Regarding the adults with DD on whom caregivers reported, there were no significant differences in the ages, race/ethnicities, or ID severity levels of adults with

DD whose caregivers had stopped working with them versus continued working with them at follow-up. Adults with DD were primarily Caucasian, younger than 30 years, and had varying levels of ID severity. Unsurprisingly, caregivers were significantly differentiated in amount of time knowing their adult with DD; retained caregivers knew their adult with DD significantly longer than turned over caregivers.

Burnout and resilience. One of the primary outcome variables was caregiver burnout. Over half of retained caregivers reported low burnout at both time points; in contrast, over half of turned over caregivers reported moderate burnout. There were no significant differences between caregiver groups in severity of burnout or frequencies of caregivers scoring in the low, moderate, or high ranges of burnout. Compared to established norms of human services professionals (Maslach et al., 1997), turned over caregivers had similar emotional exhaustion and personal accomplishment, but significantly lower depersonalization. Retained caregivers reported significantly lower emotional exhaustion, lower depersonalization and a higher sense of personal accomplishment at follow-up only. These findings suggest that significant differences between job status groups may have been found with a larger sample size.

A secondary outcome of interest was resilience, the construct of showing hardiness, grit, or perseverance in response to stressors. Retained caregivers reported higher resilience than turned over caregivers, though these differences were not significant. While burnout decreased from Time 1 to Time 2, resilience did not increase over time. Though groups were similar in resilience, only retained caregivers reported significantly higher resilience than the validation sample of the Brief Resilience Scale at follow-up, suggesting that the retained group did overall demonstrate high resilience and that significant differences would have most likely been detected had the size of both groups again been larger.

Predictors of burnout and the mediating role of resilience. Hypothesis 1 explored whether aggression severity would be associated with lower resilience and higher burnout in caregivers who had stopped working with their adult by follow-up.

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While resilience and burnout were moderately to strongly associated for the full sample, they were not significantly associated with severity of verbal or physical aggression for the full sample or within job status groups. Rather, for retained caregivers, higher hostile affect was moderately associated with higher emotional exhaustion and greater resilience, suggesting that perhaps the experience of subtler, more covert forms of aggression is more aversive to caregivers than overt aggressions. Surprisingly, higher bullying severity was moderately positively associated to a greater sense of personal accomplishment, when one would anticipate an inverse relationship. In turned over caregivers, higher hostile affect was also associated with greater emotional exhaustion and a higher sense of personal accomplishment, and adult covert aggression severity was associated with greater depersonalization. The resilience of turned over caregivers was unassociated with both aggression severity and burnout. As expected, higher resilience was associated with reduced burnout in retained caregivers. These findings support a relationship between aggression severity and caregiver burnout, and the relevance of resilience in acting as a protective factor for retained caregivers, but not for caregivers who stopped working with their adult. Unexpectedly, these relationships only held for more discreet and interpersonal forms of aggression, which suggest that this form of aggression may have a more negative impact on caregivers than more direct and observable forms of aggression.

In comparing caregiver groups, turned over caregivers reported experiencing greater verbal aggression, but not physical aggression, than retained caregivers. Retained caregivers reported significant decreases in aggression severity for all subscales at follow-up, though differences only remained significant for hostile affect and bullying severity after correcting for multiple comparisons.

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The findings of verbal aggression and covert forms of interpersonal aggression playing a greater role in burnout and retention than physical aggression may in part be explained by much of the caregiver sample being female. Aggression research has shown that women tend to engage in more indirect aggression, defined as non-physical acts of cruelty or meanness, intended to cause psychological rather than physical injury

(Björkqvist, 2017; Burton, Hafetz, & Henninger, 2008). Women tend to also place greater value in interpersonal and emotional relationships with others than men. The effects of interpersonal aggression may therefore resonate more significantly with women than men. Female caregivers may therefore be more vulnerable to these forms of aggression than males, who tend to engage in more physical aggression (Burton et al.,

2008). During interviews, caregiver participants frequently talked about how upset it made them when the adults with DD they cared for made insulting, hurtful, or racist statements towards them, and reported such concerns more frequently than concerns over being physically injured or attacked. Overall, the sample experienced slightly higher average severity of physical aggression than verbal aggression, and an equal range in responses were endorsed for both subscales, suggesting that this finding cannot be explained by this sample reporting higher verbal aggression. Previous research has also found higher levels of burnout in caregivers working in settings more likely to serve adults with higher cognitive functioning who were more likely to engage in complex forms of aggression that caregivers found harder to cope with (Hensel et al., 2012). While there were no significant differences in level of ID reported by caregivers, caregivers likely did not have accurate knowledge of their adult’s true ID level and there may have been an overrepresentation of mild to moderate ID in the adult with DD sample.

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Adult with DD physical health. The mediating effect of resilience on the relationship between adult with DD physical health needs and caregiver burnout was evaluated. On average, adults with DD had between three and four physical health needs, though adults did not differ in number of needs when compared based on caregiver job status at follow-up. Despite the number of health needs, adults were mainly reported to have fair to good physical health. Unexpectedly, there was generally an inverse relationship between caregivers’ subjective ratings of adult with DD health and number of physical health needs endorsed. Very few adults were endorsed as having excellent health. The majority of adults were taking daily medications, had diet-related concerns such as diabetes or obesity, and poor dental health. Groups differed only in number of adults requiring supports with eating; a significantly higher number of adults whose caregivers stopped working with them required feeding supports. Ratings of overall physical health was negatively associated with verbal aggression severity, suggesting that adults who were in poorer health were more likely to be verbally aggressive. Poorer physical health was also associated with higher caregiver burnout (emotional exhaustion, depersonalization), yet unassociated with caregiver resilience. Resilience was shown to significantly mediate negative relationships between adult with DD physical health ratings and both emotional exhaustion and depersonalization, as well as a positive relationship between physical health and personal accomplishment. A moderated mediation effect was tested to see if the severity of the adults’ aggression further influenced, or moderated, the mediating effect of caregiver resilience on the relationship between physical health ratings and burnout. Neither verbal nor physical aggression severity moderated this mediated relationship. This indicated that overall, caregiver

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resilience accounted for the effect of greater physical health on reduced negative burnout symptoms, but that severity of adult aggression did not influence this relationship.

Adult with DD mental health. The relationships between adult with DD mental health, caregiver resilience, and caregiver burnout were also explored. Adults with DD whose caregivers were retained versus turned over did not significantly differ in symptom severity scales for psychiatric disorder subscales. On average, adults with DD in both groups scored above the threshold for elevated clinical symptoms of a mood or anxiety disorder only but did not have elevated symptoms of organic or psychotic disorders.

Contrary to expectations, a mediating effect of resilience on the relationship between mental health concerns and caregiver burnout was not found. While one would anticipate the caregiver’s role to be more difficult when working with an adult with symptoms of a mood disorder, the caregiving task may have been more difficult had the adults in this study demonstrated higher psychotic symptoms, since mood and anxiety symptoms tend to be more internal to the individual and therefore may have had less of a direct effect on caregivers. Low scores on psychopathology subscales may also be due to caregivers failing to recognize that their adult displayed symptoms of psychopathology, as many professionals, even those trained in the identification of psychopathology, are generally untrained in identifying psychopathology in people with DD (Werner & Stawski, 2012).

Such a lack of awareness, or the adults only engaging in internally directed symptoms of psychopathology, may translate into caregivers perceiving their adults as having fewer care needs, which in turn may result in their caregiving roles being less stressful.

Aggression attributions. Caregivers were anticipated to be more likely to experience burnout when they interpreted adult aggression as intrinsically attributed, or

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stemming from internal motivators rather than as a response to environmental events. A provocation measure was used as a proxy measure of intrinsic attribution, which gauged the extent to which the caregiver perceived each aggressive behavior as unprovoked by his or her environment and therefore occurring due to internal motivations. Of aggression subscales, only covert aggression provocation scores significantly predicted caregiver retention. This again supports that more discreet interpersonal forms of aggression may have greater negative effects on caregivers than overt aggression. On average, caregivers viewed their adult as engaging in unprovoked, proactively-motivated aggression. Most adults from both job status groups had elevated verbal and physical aggression provocation scores compared to validation norms, though scores were not significantly higher from validation norms, nor were groups significantly different. from these norms.

Based on the literature, caregivers’ interpretation of aggression as occurring proactively was associated with more negative reactions by caregivers (Mills & Rose, 2011), which may in turn exacerbate adult with DD problem behavior.

Coping resources. The roles of coping style and mindfulness-based coping were explored in influencing the aggression-burnout relationship. Proactive coping was hypothesized to mediate a positive relationship between aggression severity and burnout in caregivers who continued to work with their aggressive adult at follow-up, but analyses failed to support this hypothesis. Rather, proactive coping was found to moderate the relationship between adult physical aggression and caregivers’ sense of personal accomplishment, but no other burnout subscales. Low to moderate levels of proactive coping in response to adult physical aggression were shown to positively influence caregivers’ sense of personal accomplishment. In other words, engaging in low

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proactive coping exacerbated the negative effects of physical aggression on caregivers’ sense of personal accomplishment. Contrary to our expectations, higher proactive coping did not moderate this relationship, suggesting that while low proactive coping had a detrimental effect, higher proactive coping did not appear to make a difference. Then exploring whether maladaptive forms of coping moderated the aggression-burnout relationship, self-distracting as a coping style was found to moderate the effect of verbal aggression on caregiver emotional exhaustion, further suggesting that maladaptive, avoidance based coping styles or low levels of proactive coping likely contributed to higher burnout in caregivers. Investigating the role of mindfulness on burnout, mindfulness was shown to mediate a negative relationship between verbal aggression and caregivers’ sense of personal accomplishment, suggesting that when adults engage in lower verbal aggression, mindfulness accounts for higher sense of personal accomplishment experienced by caregivers.

Finally, turned over and retained caregivers perceived having approximately equal quality social support in the workplace. Lacking social support significantly moderated, or influenced, the effect of verbal aggression on all burnout subscales. Social support did not moderate the effect of physical aggression on burnout. In other words, having low social support exacerbated the effect of verbal aggression on caregiver burnout, yet does not serve as a protective factor in weakening the relationship between verbal aggression and burnout when it is available to caregivers.

Predictors of retention. Multiple models of retention were tested to identify environmental, cognitive, and demographic predictors of caregiver retention. From hypothesized predictors of caregiver retention, only caregiver sense of personal

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accomplishment significantly predicted job retention, while other burnout subscales and resilience did not. Existing research on resilience in paid caregivers of individuals with

DD (Bekhet, Johnson, & Zauszniewski, 2012; Harvey & Quinn, 2012) suggested that resilience may help mitigate the effects of aggression on stress in caregivers to facilitate greater retention; however, in this study, resilience was found to only play a role in predicting caregiver positive psychological outcomes. Perhaps a greater sample size and a longer time period between data collection points would lead to the identification of a stronger effect of resilience on retention.

Further testing revealed that severity of adult with DD verbal aggression and fairness in decisions made in the work environment significantly predicted caregiver retention. Pay and work benefits were not found to significantly predict retention, though this may have been due to the lack of variability in caregiver pay. A model of temporal exposure to the adult with DD found that caregivers who had known their adult for longer were more likely to be retained at follow-up. A model of coping was found to significantly predict retention, showing active coping and planning to significantly predict caregiver retention and correctly classifying the job status of 69% of caregivers. A final model entering all previously identified significant predictors of job status correctly predicted job status of 75% of caregivers at follow up, and found that verbal aggression severity, fairness in the workplace, length of time knowing the adult, and active coping acted as significant predictors, though applying more robust estimates of significance resulted in only verbal aggression being significant. Again, physical aggression did not significantly predict caregiver retention.

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Main Results Summary

Given the large number of findings, this section provides a summary of take home messages from this data. Most importantly, this project found that verbal aggression played a more important role in predicting burnout and caregiver retention than physical aggression; in fact, verbal aggression emerged as the only significant predictor of retention after accounting for multiple comparisons. Results for secondary measures of aggression (bullying, hostile affect, covert aggression) suggested that it may be the manipulative, covert components of verbal aggression may play a more important role in predicting caregiver outcomes than the experience of being insulted or name called. This was indicated by covert, more interpersonal forms of aggression were associated with caregiver burnout and resilience, while verbal and physical aggression were not. Since caregivers viewed adult aggression as primarily proactive, this sample was more likely to respond negatively to adult aggression. Caregiver resilience reduced the negative effect of poor adult physical health on caregiver burnout, although it did not play a role in the relationship between adult mental health needs and burnout. Because caregivers may be more directly affected by adult physical health needs than mental health needs (i.e., they need to provide more hands-on support for physical health needs and may find it easier to ignore or are less likely to know how to respond to symptoms of anxiety or psychosis), it is unsurprising that resilience appeared to play a bigger role for physical than mental health symptoms. It was surprising that engaging in proactive and mindfulness-based coping did not appear to be as important in mediating and moderating the effects of aggression on caregiver burnout. Engaging in mindfulness-based coping accounted for a

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negative relationship between verbal aggression and personal accomplishment, while engaging in low levels of proactive coping only resulted in caregivers who experienced physical aggression having a reduced sense of personal accomplishment.

Implications

These results suggest the need of behavioral interventions to provide adequate attention to verbal aggression and interpersonal aggression in general, particularly given that most of the direct support field is female. Behavioral interventions for verbal aggression typically focus almost exclusively on teaching caregivers methods for reducing the occurrence of the verbal aggression. Less often is the focus to teach caregivers how to effectively cope with being the recipients of verbal aggression. It has been recommended that if interventions are initially unsuccessful in reducing problem behavior, additional interventions should be provided to mitigate the effect of long-term exposure to problem behavior (Mills & Rose, 2011). It would be beneficial for staff group trainings to be offered that teach caregivers on the effects of healthy versus unhealthy coping and allow the opportunity for caregivers to meet as a group to provide social support.

The current study found some support for the utility of mindfulness in mitigating the negative effects of aggression on caregivers. There have been several studies to investigate the effectiveness of caregiver mindfulness training in reducing stress, reducing maladaptive coping, and increasing self-efficacy for parents and paid caregivers of people with DD (Ferraioli & Harris, 2013; Hutchinson et al., 2014; McConachie,

McKenzie, Morris, & Walley, 2014; Noone & Hastings, 2010; Singh, Lancioni, Karazsia,

Chan, & Winton, 2016). An example of one short-term mindfulness training program was

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a 1.5 day PACT training that included a focus on mindfulness and acceptance resulted in a medium effect size on staff caregiver psychological distress (Noone & Hastings, 2010).

Evidence supported the role of brief, short-term trainings in mindfulness in promoting positive outcomes and could therefore be delivered to staff meetings without costing caregiver agencies a large amount of time or resources. Mindfulness training may therefore be worthwhile for caregivers of adults who engage in interpersonal forms of aggression or who have poor overall physical health.

Strengths

Strengths of this study included the 90% retention rate in participants, wide range of predictor variables considered in order to predict cognitive outcomes and retention, and the collection of longitudinal data. The current sample was primarily female, mainly between the ages of 30 and 55, had some post-secondary education, and African

American. These demographics are consistent to those found by the National Direct

Service Workforce Center who examined the characteristics of direct support professionals across 23 states (Hewitt et al., 2009), suggesting that the current sample is largely representative of the direct support workforce as a whole, and that findings are therefore generalizable. Few studies on paid caregiver outcomes have been able to collect data longitudinally due the difficulties associated with retaining a population with an already high turnover rate in their professional roles. The measurement of different subtypes of aggression and the large number of predictors of retention and burnout facilitated an in-depth analysis of factors associated with caregiver outcomes at the level of the adult with DD, caregiver, and work environment. Finally, the data collection

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methodology, through meeting one-on-one and privately with participants to collect information both through an interview and questionnaire format, helped caregivers feel more at ease. Meeting one-on-one, as opposed to mailing questionnaire packets, also facilitated more accurate and complete data collection.

Limitations and Future Directions

Limitations of this study relate to the likelihood of biased responding due to the sensitive nature of the study topic. Despite methods underwent to minimize discomfort and ensure confidentiality of responses during the data collection process, some participants may have still exhibited bias simply because they did not want the research team to judge them negatively. The sensitive nature of the study may have also led to recruitment bias towards caregivers who were more likely to stay in their jobs. This would explain the slightly higher retention rate found in the current sample as compared to rates found by other studies. Of the recruited sample, the small proportion of caregivers lost to follow-up may have represented more extreme cases of caregivers who had left their jobs by the time of follow-up for reasons related to adult with DD aggression. If this were the case, they may have provided responses that varied significantly from the rest of the sample, which may have resulted in a further skewed dataset. Fewer significant effects overall may have also been due to the short time frame for follow-up. Study inclusion criteria required participants to have known their adult with DD for at least three months, resulting in caregivers having worked with the aggressive adult for six months by follow up. Three months was selected to ensure that participants would have had enough time to get to know the adult well, and because the

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criterion of three months has been used in previous studies (Howard et al., 2009; Mills &

Rose, 2011).

Another limitation was the failure to include measures of how stressful caregivers felt it was to experience adult aggression, and caregivers’ intention to quit their jobs at both time points.. The amount of stress experienced by caregivers likely contributed to variance in number and frequency of coping mechanisms activated. Another variable of interest that would have been of use to measure was caregivers’ intention to quit at follow-up. Intention to quit has been identified as a reliable indicator of actual turnover by some researchers (Lambert, 2006; Kazemi et al., 2015).

Future research on the complex interaction between cognitive responses to adult aggression should collect a larger sample size and use a longer time frame for follow-up in order to have enough power to investigate more complex interactions between cognitive responses and environmental resources that may mitigate the effects of aggression on caregiver outcomes. For example, models including multiple mediator variables simultaneously may calculate the effects of resilience, coping style, and social support in mediating the effects of aggression on caregiver outcomes. In order to detect a small to medium effect in such examples of moderated mediation, a minimum sample of

529 participants would need to be collected based on a priori sample estimations using

G*power, meaning that this would be a much larger endeavor. Collecting data over a longer time frame may also further inform our knowledge of caregiver responses to adult with DD aggression.

Conclusions

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This study aimed to explore the relationships of verbal aggression and physical aggression with caregiver retention, resilience, and burnout, while simultaneously examining the interacting and mitigating effects of adult with DD mental health, physical health, caregiver coping styles, and social support. Results showed that verbal aggression and related discreet interpersonal forms of aggression had a greater impact on caregiver outcomes than physical aggression, as only interpersonal aspects of aggression were associated with higher burnout and reduced resilience. Caregiver resilience played a significant protective role in mediating negative effects of adult aggression and poorer physical health on sense of accomplishment in retained caregivers. Additionally, proactive coping styles, mindfulness, and social support helped to mitigate the effects of aggression on caregivers’ sense of accomplishment at work. These results support the need for future research to investigate methods for providing caregivers with training on not only methods to reduce overt forms of physical and verbal aggression, but also on how to appropriately respond to interpersonal and manipulative forms of aggression.

They additionally support the need to provide caregivers training on how to cope and exhibit resilience when targeted with verbal and manipulative forms of aggression.

Increasing supports to caregivers in the work environment would improve their ability to support adults with DD in reducing maladaptive behavior and in turn increase retention rates. By continuing to provide caregivers with supports in not only how to manage aggression directly but also coping internally with being the target of interpersonal aggression, agencies and behavioral therapists would invest not only in the quality and longevity of direct support care, but also greatly increase the wellbeing and quality of life of adults with DD.

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Appendix A. Recruitment Flyer

Appendix B. Measures

Time 1 Current Job Status

1. How long have you been working for your current employer?  Less than 1 year  1 – 2 years  2 or more years

2. About how much do you earn per hour?  Less than $8  $8 – 10  $10 – 12  $12+

3. Which of the following benefits do you receive through your current employer? (Check all that apply)  Paid sick leave  Paid holiday  Partial health insurance  Full health insurance  Bonus incentives  Don’t know

4. How many hours per week do you work at this job?  Less than 20 hours  20 – 40 hours  40+ hours

5. Do you currently work a second job?  Yes  No

6. How many hours per week do you work at your second job?  Less than 20 hours  20 – 40 hours  40 or more hours

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7. Do you work at least one shift per week with an adult with a developmental disability who is aggressive* towards you or others?  Yes  No

Aggression can include physical (hitting, kicking, biting, pushing, throwing objects at, or using some other force towards you or another person to attempts to hurt you or another person) or verbal (using profanity, derogatory language, or making insulting statements towards you or another person).

8. How many hours a week do you work with this adult?  Less than 5 hours  5 – 10 hours  10 – 20 hours  20 – 40 hours  40+ hours a week

Time 2 Current Job Status

Directions: To be completed as an interview by research team study member.

Prompt: Please answer the following questions with regards to [INITIALS OF PERSON FROM TIME 1]:

9. Are you still working with the same aggressive person [INITIALS] with whom you were working 3 months ago?  Yes  No

10. Are you working the same amount of hours with this adult as you were 3 months ago?  Yes  No  If participant does not know, have him/her tell you approx. how many hours he/she is working per week: ______hours  Not applicable

11. (IF NO to #1) Did you want to stop working with this person?  Yes  No  Not applicable

12. (If YES to #1) Do you want to stop working with this person?  Yes  No  Not applicable

13. [IF STOPPED WORKING] For what reason(s) did you stop working with this person? (Interviewer: Check all that apply)  His/her aggressive behavior  My availability changed  The person moved to a new house or agency  My employer moved me to work with someone else  I left my job at that same agency  Unknown reasons related to my employing agency  For personal reasons  Not applicable  Other: ______

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14. [IF WORKING LESS HOURS] For what reasons did you cut down on your hours?  His/her aggressive behavior  My availability changed  The person moved to a new house or agency  My employer moved me to work with someone else  I left my job at that same agency  Unknown reasons related to my employing agency  For personal reasons  Not applicable  Other: ______

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Demographic Questionnaire

Please answer the following questions about YOURSELF. For each question, please select one (1) answer that best describes you.

4. What is your gender?  Male  Female

5. About how old are you?  18 – 25 years  26 – 35 years  36 – 45 years  46 – 55 years  56 – 65 years  66+ years

6. What best describes your race?  African  African American  American Indian/ Alaskan Native  Asian, Asian American, or Pacific Islander  Caucasian, Caucasian American or White  Other  More than one of the above  I prefer not to answer

7. What best describes your ethnicity?  Hispanic, Latino/a, or Spanish origin  Not Hispanic, Latino/a, or Spanish origin

8. Are you currently in school?  Yes  No

9. How far have you gone in school?  Grade School (<9th grade)  High School or GED but didn't graduate  High School or GED Completed  Training after high school, other than college  Some College  College Graduate  Post Graduate level

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10. What is your religious preference?  Christian  Jewish  Muslim  Orthodox (Greek, Russian)  Roman Catholic  Athiest  Agnostic  Other: ______

11. What is your marital status:  Single  Domestic partnership  Married  Separated  Divorced  Widowed

12. Is your primary language English?  Yes  No

13. Do you have children?  Yes  No

14. How long have you been working with people with developmental disabilities?  Less than 6 months  6 months to 1 year  1 – 2 years  2– 5 years  5 – 10 years  10 or more years

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Brief COPE (modified for use with IDD staff)

These items deal with ways you may have been coping with the stress in your life since you began working with this aggressive person. Each item says something about a particular way of coping. There are many different ways to cope and everyone copes with problems differently.

I want to know to how much you have been doing what the item says to cope with working with someone who is physically or verbally aggressive. Don't answer on the basis of whether it seems to be working or not—just whether or not you are doing it. Try to rate each item separately in your mind from the others.

Use these response choices.

I've a medium amount doing this been

I haven't at all doing this been

I've a little doing this been bit

I've a lot doing this been

1 I've been turning to work or other activities to take my mind off 1 2 3 4 things. 2 I've been concentrating my efforts on doing something about the 1 2 3 4 situation I'm in. 3 I've been saying to myself "this isn't real." 1 2 3 4 4 I've been using alcohol or other drugs to make myself feel better. 1 2 3 4 5 I've been getting emotional support from others. 1 2 3 4 6 I've been giving up trying to deal with it. 1 2 3 4 7 I've been taking action to try to make the situation better. 1 2 3 4 8 I've been refusing to believe that it has happened. 1 2 3 4 9 I've been saying things to let my unpleasant feelings escape. 1 2 3 4 10 I’ve been getting help and advice from other people. 1 2 3 4 11 I've been using alcohol or other drugs to help me get through it. 1 2 3 4 12 I've been trying to see it in a different light, to make it seem more 1 2 3 4

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positive. 13 I’ve been criticizing myself. 1 2 3 4 14 I've been trying to come up with a strategy about what to do. 1 2 3 4 15 I've been getting comfort and understanding from someone. 1 2 3 4 16 I've been giving up the attempt to cope. 1 2 3 4 17 I've been looking for something good in what is happening. 1 2 3 4 18 I've been making jokes about it. 1 2 3 4 19 I've been doing something to think about it less, such as going to 1 2 3 4 movies, watching TV, reading, daydreaming, sleeping, or shopping. 20 I've been accepting the reality of the fact that it has happened. 1 2 3 4 21 I've been expressing my negative feelings. 1 2 3 4 22 I've been trying to find comfort in my religion or spiritual 1 2 3 4 beliefs. 23 I’ve been trying to get advice or help from other people about 1 2 3 4 what to do. 24 I've been learning to live with it. 1 2 3 4 25 I've been thinking hard about what steps to take. 1 2 3 4 26 I’ve been blaming myself for things that happened. 1 2 3 4 27 I've been praying or meditating. 1 2 3 4 28 I've been making fun of the situation. 1 2 3 4

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Kentucky Inventory of Mindfulness Skills (Baer, Smith, & Allen, 2004) ------Please rate each of the following statements using the scale provided. Write the number in the blank that best describes your own opinion of what is generally true for you. 1 2 3 4 5 Never or very Rarely true Sometimes true Often true Very often or rarely true always true

_____1. I notice changes in my body, such as whether my breathing slows down or speeds up. _____2. I’m good at finding the words to describe my feelings. _____3. When I do things, my mind wanders off and I’m easily distracted. _____4. I criticize myself for having irrational or inappropriate emotions. _____5. I pay attention to whether my muscles are tense or relaxed. _____6. I can easily put my beliefs, opinions, and expectations into words. _____7. When I’m doing something, I’m only focused on what I’m doing, nothing else. _____8. I tend to evaluate whether my perceptions are right or wrong. _____9. When I’m walking, I deliberately notice the sensations of my body moving. _____10. I’m good at thinking of words to express my perceptions, such as how things taste, smell, or sound. _____11. I drive on “automatic pilot” without paying attention to what I’m doing. _____12. I tell myself that I shouldn’t be feeling the way I’m feeling. _____13. When I take a shower or bath, I stay alert to the sensations of water on my body. _____14. It’s hard for me to find the words to describe what I’m thinking. _____15. When I’m reading, I focus all my attention on what I’m reading. _____16. I believe some of my thoughts are abnormal or bad and I shouldn’t think that way. _____17. I notice how foods and drinks affect my thoughts, bodily sensations, and emotions. _____18. I have trouble thinking of the right words to express how I feel about things. _____19. When I do things, I get totally wrapped up in them and don’t think about anything else.

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1 2 3 4 5 Never or very Rarely true Sometimes true Often true Very often or rarely true always true _____20. I make judgments about whether my thoughts are good or bad. _____21. I pay attention to sensations, such as the wind in my hair or sun on my face. _____22. When I have a sensation in my body, it’s difficult for me to describe it because I can’t find the right words. _____23. I don’t pay attention to what I’m doing because I’m daydreaming, worrying, or otherwise distracted. _____24. I tend to make judgments about how worthwhile or worthless my experiences are. _____25. I pay attention to sounds, such as clocks ticking, birds chirping, or cars passing. _____26. Even when I’m feeling terribly upset, I can find a way to put it into words. _____27. When I’m doing chores, such as cleaning or laundry, I tend to daydream or think of other things. _____28. I tell myself that I shouldn’t be thinking the way I’m thinking. _____29. I notice the smells and aromas of things. _____30. I intentionally stay aware of my feelings. _____31. I tend to do several things at once rather than focusing on one thing at a time. _____32. I think some of my emotions are bad or inappropriate and I shouldn’t feel them. _____33. I notice visual elements in art or nature, such as colors, shapes, textures, or patterns of light and shadow. _____34. My natural tendency is to put my experiences into words. _____35. When I’m working on something, part of my mind is occupied with other topics, such as what I’ll be doing later, or things I’d rather be doing. _____36. I disapprove of myself when I have irrational ideas. _____37. I pay attention to how my emotions affect my thoughts and behavior. _____38. I get completely absorbed in what I’m doing, so that all my attention is focused on it.

_____39. I notice when my moods begin to change.

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MBI – Human Services Survey

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Areas of Worklife Survey

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Brief Resilience Scale

Please respond to each item by marking one box per row.

Strongly Disagree Neutral Agree Strongly Disagree Agree 1 I tend to bounce back quickly 1 2 3 4 5 after hard times. 2 I have a hard time making it 1 2 3 4 5 through stressful events. 3 It does not take me long to 1 2 3 4 5 recover from a stressful event. 4 It is hard for me to snap back 1 2 3 4 5 when something bad happens. 5 I usually come through 1 2 3 4 5 difficult times with little trouble. 6 I tend to take a long time to 1 2 3 4 5 get over set-backs in my life.

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Adult with Developmental Disabilities Demographics Questionnaire

Please provide the following information about the adult with developmental disabilities who is aggressive towards you.

What is the adult with DD’s age range?  18 – 29  30 – 39  40 – 49  50 – 59  60 +

What is the adult with DD’s gender?  F  M

What is the adult with DD’s race?  African American  Caucasian (European origin)  Hispanic  Asian American  Other (if checked, please specify:______)

What is the adult with DD’s severity of cognitive impairment?  Mild  Moderate  Severe/profound  Don’t know

How long have you known this adult? ______

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Adult Scale of Hostility and Aggression, Reactive/Proactive (A-SHARP)

INSTRUCTIONS: Based on your experience of the person’s behavior in the past three months, please first circle ONE "Problem Scale" answer for each of the items.

Problem Scale: Please circle the number which best reflects the person’s behavior…

0 = Does not happen (NOTE: If circled, the "Who starts it?" rating [next column over] is NOT scored for that item) 1 = Mild or infrequent problem 2 = Moderately serious and/or frequent problem 3 = Severe and/or very frequent problem Next, if this answer is a "1," "2," or "3" (that is, if it is a problem at all), circle ONE "Who starts it?" rating for the item if applicable.

"Who starts it?" Rating: Where applicable, please circle the number which best reflects the client's behavior… -2 = Only when provoked, unplanned, or when s/he "just loses it;" -1 = Usually provoked and/or unplanned; 0 = Equally likely to happen with or without provocation; 1 = Usually the first to act, without provocation; 2 = Always the first to act (that is, always the one who "starts it");

DEFINITIONS: Instigator: The one who deliberately "starts it;" the first or only one to act in an incident of aggression; Provocation: Any action leading to the aggression, no matter how mild (e.g., verbal teasing or being crowded) or severe (e.g., being hit or kicked), which seems to anger or upset the subject and trigger the behavior; Problem Scale Who starts it?

Frequent/ Moderate

Usually provoked

Frequent/ Severe

Mild/ Mild/ Infrequent

Doesn’t happen

Equally likely

Not provoked

Usually not

Provoked

provoked

1. Is "sneaky;" does things "on the sly" 0 1 2 3 NA 2. Attempts to touch others in inappropriate, 0 1 2 3 -2 -1 - 1 2 sexually suggestive manner 3. Pinches others 0 1 2 3 -2 -1 - 1 2 4. Is resentful over seemingly minor issues 0 1 2 3 NA 5. Breaks others' things 0 1 2 3 -2 -1 - 1 2

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Problem Scale Who starts it?

Frequent/ Moderate

Usually provoked

Frequent/ Severe

Mild/ Mild/ Infrequent

Doesn’t happen

Equally likely

Not provoked

Usually not

Provoked

provoked

6. Is quick to anger ("hot-headed") 0 1 2 3 NA 7. Takes others' things by force 0 1 2 3 -2 -1 - 1 2 8. Broods, pouts, or is sullen 0 1 2 3 NA 9. Calls others insulting names in their 0 1 2 3 -2 -1 - 1 2 absence 10. Shoves or pushes others 0 1 2 3 -2 -1 - 1 2 11. Crowds others (invades their personal 0 1 2 3 NA space) 12. Intimidates others 0 1 2 3 NA 13. Says, "I hate you" or makes other hurtful 0 1 2 3 -2 -1 - 1 2 statements 14. Bites others 0 1 2 3 -2 -1 - 1 2 15. Insults others to their faces 0 1 2 3 -2 -1 - 1 2 16. Throws objects at others 0 1 2 3 -2 -1 - 1 2 17. Reacts suddenly or impulsively to minor 0 1 2 3 NA provocations 18. Shouts at others in anger 0 1 2 3 -2 -1 - 1 2 19. Uses headlocks or other “wrestling” holds 0 1 2 3 -2 -1 - 1 2 against others 20. Gets mad when caught behaving badly 0 1 2 3 NA 21. Is overly argumentative 0 1 2 3 NA 22. Uses profanity to shock or offend others 0 1 2 3 -2 -1 - 1 2 23. Cuts others with a sharp object 0 1 2 3 -2 -1 - 1 2 24. Tickles or otherwise physically teases 0 1 2 3 NA others, even after being asked to stop 25. Steals from others when they aren't 0 1 2 3 -2 -1 - 1 2 looking 26. Calls others insulting names to their faces 0 1 2 3 -2 -1 - 1 2 27. Trips others 0 1 2 3 -2 -1 - 1 2 28. Head-butts others 0 1 2 3 -2 -1 - 1 2 29. Makes insulting comments about others 0 1 2 3 NA behind their backs 30. Breaks own belongings 0 1 2 3 -2 -1 - 1 2 31. Makes threatening gestures (like shaking 0 1 2 3 -2 -1 - 1 2 fist) 32. Charges at others 0 1 2 3 -2 -1 - 1 2 33. Verbally teases others, even after being 0 1 2 3 NA asked to stop

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Problem Scale Who starts it?

Frequent/ Moderate

Usually provoked

Frequent/ Severe

Mild/ Mild/ Infrequent

Doesn’t happen

Equally likely

Not provoked

Usually not

Provoked

provoked

34. If caught, denies having behaved badly 0 1 2 3 NA 35. Pulls others' hair 0 1 2 3 -2 -1 - 1 2 36. When angry, is slow to cool off 0 1 2 3 NA 37. Spits at others 0 1 2 3 -2 -1 - 1 2 38. Says "I hate [someone not present]" or 0 1 2 3 -2 -1 - 1 2 makes other hurtful statements in absence of the person concerned 39. Chokes others/Grabs others' necks 0 1 2 3 -2 -1 - 1 2 40. Takes offense at things others say or do 0 1 2 3 -2 -1 - 1 2 when s/he shouldn't 41. Starts trouble by baiting others 0 1 2 3 NA 42. If caught, makes excuses for bad behavior 0 1 2 3 NA 43. Is hostile, "has a chip on his/her shoulder" 0 1 2 3 NA 44. Scratches others with fingernails 0 1 2 3 -2 -1 - 1 2 45. Encourages others to gang up on someone 0 1 2 3 NA (physically OR verbally) 46. Hits others with objects 0 1 2 3 -2 -1 - 1 2 47. Is often grouchy 0 1 2 3 NA 48. Verbally threatens others with physical 0 1 2 3 -2 -1 - 1 2 harm 49. Hits or shoves others forcefully 0 1 2 3 -2 -1 - 1 2 50. Makes unwanted sexual comments to 0 1 2 3 NA others 51. Gets revenge after some time has passed 0 1 2 3 NA and the other person is not on guard 52. Tries not to get caught while doing 0 1 2 3 NA harmful things to others Problem Scale Who starts it?

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Physical Health Questionnaire

In general, how would you describe this person’s health? 0 = Poor 1 = Fair 2 = Neither healthy nor unhealthy 3 = Good 4 = Excellent

Due to a physical impairment, disease, or disability, does the adult require regular supports with any of the following:

 Lifting and moving (ex.: wheelchair bound, use of walker, require constant

assistance with movement)

 Monitoring for falls (ex.: seizures, strokes, heart attack)

 Monitoring for breathing or swallowing problems

 Dental care (ex.: dental disease, poor dental health)

 Diet monitoring (ex.: diabetes, obesity)

 Injections (ex.: insulin)

 Toileting supports (ex.: diaper changing, cleaning after an accident)

 Feeding (ex.: tube feeding, spoon feeding)

 Daily medications

 Help with seeing, hearing, feeling to prevent harm or injury (ex.: walking into

traffic, touching or eating items that are too hot)

 Supports in daily exercises to improve joint or muscle functioning (ex.: cerebral

palsy, arthritis)

 Care for injuries (ex.: wounds, sutures)

 Other: ______

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