THE CATHOLIC UNIVERSITY OF AMERICA The Relationship of Stroke Patients’ Functional and Cognitive Status And Caregivers’ Resilience to Caregiver Burden A DISSERTATION Submitted to the Faculty of the School of Nursing Of The Catholic University of America In Partial Fulfillment of the Requirements For the Degree Doctor of Philosophy © Copyright All Rights Reserved Margaret D. Nolan Washington, D.C. 2015 The Relationship of Stroke Patients’ Functional and Cognitive Status And Caregivers’ Resilience to Caregiver Burden Margaret D. Nolan, Ph.D. Director: Jean Toth, Ph.D. Currently it is estimated that 795,000 persons experience a stroke every year. Of that number up to one-third of survivors will be permanently disabled. It is neither financially feasible nor desirable to place these disabled stroke survivors in long-term care facilities to provide them with the needed assistance if they can be cared for at home. Frequently, the care of these patients is assumed by family members or friends. However, providing care has been shown to be burdensome for some caregivers of stroke patients (Johnson, 1998; Scholte op Reimer, deHaan, Pijnenborg, Limburg, & van den Bos, 1998a; Van Puymbroeck, Hinojosa, & Rittman, 2008). The factors that contribute to development of caregiver burden have been studied by numerous researchers, but findings are inconclusive (Jeng-Ru, Hills, Kaplan, & Johnson, 1998; McCullagh, Brigstocke, Donaldson, & Kalra, 2005; Nelson, Smith, Martinson, Kind, & Luepker, 2008; Vincent, Desrosiers, Landreville, & Demers, 2009). The contribution of the stroke patients’ functional and/or cognitive disabilities to the caregiver’s burden level is not clear as a result of contradictory findings in the published research. Further, resilience has not been measured in stroke caregivers and evaluated as a possible mediating factor in burden’s development. This study sought to clarify those interrelationships. A descriptive correlational design was used in this study. Fifty-six stroke patient and caregiver dyads were evaluated at least two weeks after the stroke patient returned to the home setting after experiencing an acute stroke. All of the participants were adults who spoke English. Stroke patients were evaluated functionally with the Barthel Index, and cognitively with the Mini-Mental State Exam by the investigator. Caregivers self-administered the Resilience Scale, the modified Zarit Burden Interview, and a demographic data collection tool. Demographic data was evaluated with descriptive statistics and the hypotheses were tested using multiple regression. Regression analysis indicated that the functional status and cognitive status of the stroke patients were not significantly related to the burden level of their caregivers. However, the caregivers’ personal resilience level was significantly related to caregiver burden [F (4, 50) = 4.10, p = 0.048]. Demographic data analysis revealed that there was also a significant relationship between the caregivers’ perception that their own physical condition made it difficult to provide care and their burden level. This study’s findings contribute to the existing body of knowledge regarding caregiver burden in stroke patients. Identification of factors that contribute to or mediate the development of caregiver burden may aid nurses and other health care providers in identifying caregivers who are at risk for developing burden, and ultimately assist in maintaining stroke patients in their home setting long-term. This dissertation by Margaret D. Nolan fulfills the dissertation requirements for the doctoral Degree in Nursing approved by Jean Toth, Ph.D., RN, as director, and by Teresa Walsh, Ph.D, RN, and Colleen Norton, Ph.D., RN as readers. ____________________________________ Jean Toth, Ph. D., RN, Director ____________________________________ Teresa Walsh, Ph. D., RN, Reader ____________________________________ Colleen Norton, Ph. D., RN, Reader ii DEDICATION To my children, Amanda and Jonathan, who have given up their time with me while I worked to navigate the process of doctoral studies and To my mother and father, who inspired this study. iii TABLE OF CONTENTS CHAPTER I .................................................................................................................................... 1 Introduction ..................................................................................................................................... 1 Background ............................................................................................................................. 1 Stroke ...................................................................................................................................... 2 Functional and Cognitive Status ............................................................................................. 3 Resilience ................................................................................................................................ 4 Caregiving ............................................................................................................................... 6 Caregiver Burden .................................................................................................................... 7 Statement of the Problem ................................................................................................................ 9 Theoretical Framework ................................................................................................................... 9 Subsystems .............................................................................................................................. 9 Stimuli ................................................................................................................................... 10 Research Questions ....................................................................................................................... 14 Statement of the Purpose .............................................................................................................. 14 Definition of Terms....................................................................................................................... 14 Stroke .................................................................................................................................... 14 Functional Status ................................................................................................................... 15 Cognitive Status .................................................................................................................... 15 Resilience .............................................................................................................................. 15 Caregiver ............................................................................................................................... 16 Caregiver Burden .................................................................................................................. 16 Research Hypotheses .................................................................................................................... 16 Significance of the Study .............................................................................................................. 17 Assumptions .................................................................................................................................. 18 Summary ....................................................................................................................................... 18 CHAPTER II ................................................................................................................................. 19 Review of the Literature ............................................................................................................... 19 Stroke ............................................................................................................................................ 19 Incidence and Prevalence ...................................................................................................... 19 Demographics ....................................................................................................................... 20 iv Stroke Outcomes ................................................................................................................... 22 Co-morbidities associated with stroke outcomes .................................................................. 24 Measurement of post-Stroke Functional Disability .............................................................. 27 Measurement of Post-Stroke Cognitive Disability ............................................................... 29 Resilience ...................................................................................................................................... 31 Background ........................................................................................................................... 31 Resilience Measurement ....................................................................................................... 35 Caregiving ..................................................................................................................................... 36 Demographics of caregiving ................................................................................................. 36 Caregiving Demands ............................................................................................................