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Family Involvement Within Assisted Living: Care-Receivers' and Caregivers' Roles and Relationships

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Family Involvement Within Assisted Living: Care-Receivers' and Caregivers' Roles and Relationships University of Denver Digital Commons @ DU Electronic Theses and Dissertations Graduate Studies 1-1-2011 Family Involvement Within Assisted Living: Care-Receivers' and Caregivers' Roles and Relationships Rachel Vineet Solomon University of Denver Follow this and additional works at: https://digitalcommons.du.edu/etd Part of the Experimental Analysis of Behavior Commons, and the Social Work Commons Recommended Citation Solomon, Rachel Vineet, "Family Involvement Within Assisted Living: Care-Receivers' and Caregivers' Roles and Relationships" (2011). Electronic Theses and Dissertations. 616. https://digitalcommons.du.edu/etd/616 This Dissertation is brought to you for free and open access by the Graduate Studies at Digital Commons @ DU. It has been accepted for inclusion in Electronic Theses and Dissertations by an authorized administrator of Digital Commons @ DU. For more information, please contact [email protected],[email protected]. FAMILY INVOLVEMENT WITHIN ASSISTED LIVING: CARE-RECEIVERS’ AND CAREGIVERS’ ROLES AND RELATIONSHIPS __________ A Dissertation Presented to the Faculty of the Graduate School of Social Work University of Denver __________ In Partial Fulfillment of the Requirements for the Degree Doctor of Philosophy __________ by Rachel V. Solomon June 2011 Advisor: Jean East, Ph.D. ©Copyright by Rachel V. Solomon 2011 All Rights Reserved Author: Rachel V. Solomon Title: FAMILY INVOLVEMENT WITHIN ASSISTED LIVING: CARE- RECEIVERS’ AND CAREGIVERS’ ROLES AND RELATIONSHIPS Advisor: Jean East, Ph.D. Degree Date: June 2011 Abstract Family systems providing informal care and support to their aging relatives, who were residing in assisted living systems and receiving formal care were central to this study. A broader understanding of family involvement, with respect to exploring both care-receiver and caregiver roles and relationships, within the regulatory and environmental context of assisted living was sought through a qualitative research process. This study employed a phenomenological approach to conduct in-depth interview sessions with eight pairs of participants, comprising elderly residents in five assisted living facilities and their respective caregiving family members, typically a daughter or son and, in one case, a close friend, all of whom were personally interviewed. A total of 16 participants were interviewed individually. The three dominant themes that emerged from care-receivers and their caregiving relatives’ experiences, which characterized and impacted their family involvement, were (1) Coping efforts and attitudes that characterize the aging, the care-receiving, and the caregiving processes; (2) Enduring and changing roles and relationships in family systems; and (3) The paradox of institutional long-term care, as it created both relief and stress for elderly care- receivers’ and their caregivers in family systems. A systems/ecological framework is applied to explicate these findings, and policies pertaining to assisted living, and their economic implications for the long-term care process are also discussed. ii Acknowledgements I wish to recognize the cooperation of the five assisted living facilities, along with the generous contribution of the elderly care-receivers’ and their respective caregiving family members, who graciously shared their personal stories to help other families who are in similar circumstances. Special thanks to Steve Bender for sharing his expertise on assisted living facilities in Colorado Springs. I am extremely grateful to my dissertation chair, Dr. Jean East for her constant encouragement and interest in my research work. Thank you for gently and patiently guiding me during the course of this study. Dr. Enid Cox, I will always be indebted to you for believing in me and for inspiring me to pursue my doctoral education. I have no doubt that my association with you is not by chance, but by divine providence. My heartfelt thanks go to the other members of my dissertation committee, Drs. Kathleen Ohman, Walter LaMendola, and Kathy Green, who have advised and supported me in my doctoral course work and in my dissertation research work. I also offer my sincere appreciation to the University of Denver and the Graduate School of Social Work at University of Denver for their generous financial support, which enabled me to pursue my academic goals. To Pat Corwin, who painstakingly edited my comprehensive proposal and my entire dissertation, I thank you immensely. I especially acknowledge my husband Vinay Samuel, my son Daniel, my parents, Ronald Solomon and Dr. Veena Solomon, my parents-in-law, Rev. Dr. Christie Kumar Bontha and Pramila Kumari, and my brother Rahul Solomon for their sacrificial love, encouragement, and prayers, and for personally investing in me and in this educational journey. Above all, I thank Yahweh, my God for being so faithful in seeing me through this incredible journey. iii Table of Contents Chapter One: Introduction .................................................................................................. 1 Statement of Research............................................................................................. 1 Organization of This Dissertation ........................................................................... 3 Purpose and Rationale for the Study ....................................................................... 4 Significance of the Study ........................................................................................ 6 Important Definitions .............................................................................................. 8 Family. ........................................................................................................ 9 Family caregiving. .................................................................................... 10 Long-term care. ......................................................................................... 12 Assisted living. .......................................................................................... 12 Family involvement. ................................................................................. 14 The Systems/Ecological Framework .................................................................... 15 Systems framework: Development and relevance. ................................... 16 Ecological framework: Development and relevance. ............................... 21 Strengths and Weaknesses of the Systems/Ecological Framework ...................... 27 Chapter Two: Literature Review ...................................................................................... 30 Demographic and Social Trends and Their Implications for an Aging American Society .................................................................................................. 30 Changes in the American Family Structure and Ideals ......................................... 34 Female caregivers. .................................................................................... 38 Major Theoretical Approaches to Aging and Caregiving ..................................... 40 Role theory. ............................................................................................... 40 Life-course theory. .................................................................................... 41 Social exchange theory. ............................................................................ 42 Family Caregiving and Care-Receiver Research: Past and Present Trends ......... 43 A Historical Overview of Institutional Long-Term Care in the United States. .................................................................................................................... 47 Long-Term Care Consumers and Their Needs ..................................................... 50 Family Involvement Within Institutional Long-Term Care.................................. 55 Evolution and Need for Assisted Living Care ...................................................... 58 Economic Implications for Long-Term Care Consumers and Their Families ................................................................................................................. 62 Private long-term care insurance. ............................................................. 64 Medicare and Medicaid Programs ........................................................................ 65 Medicare. .................................................................................................. 66 Medicaid. .................................................................................................. 67 Analysis of the Impact and Role of Medicare and Medicaid on Long-Term Care ....................................................................................................................... 68 Financing Assisted Living: A Medicare/Medicaid Policy Dilemma .................... 74 Chapter 3: Qualitative Methodology ................................................................................ 79 Importance of Qualitative Research...................................................................... 79 iv Rationale for Conducting a Qualitative Research Study ...................................... 80 Phenomenological Tradition ................................................................................. 82 Assumptions of phenomenological inquiry. ............................................. 83 Conceptualizing Family Involvement ................................................................... 84 Research
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