Informal Caregiver Identity: Voluntary Job Fit, Teamwork, and Tools - Erica Spunt Jablonski

University of New Hampshire University of New Hampshire Scholars' Repository Doctoral Dissertations Student Scholarship Spring 2019 INFORMAL CAREGIVER IDENTITY: VOLUNTARY JOB FIT, TEAMWORK, AND TOOLS Erica Spunt Jablonski University of New Hampshire, Durham Follow this and additional works at: https://scholars.edu/dissertation Recommended Citation Jablonski, Erica Spunt, "INFORMAL CAREGIVER IDENTITY: VOLUNTARY JOB FIT, TEAMWORK, AND TOOLS" (2019).edu/dissertation/2449 This Dissertation is brought to you for free and open access by the Student Scholarship at University of New Hampshire Scholars' Repository. It has been accepted for inclusion in Doctoral Dissertations by an authorized administrator of University of New Hampshire Scholars' Repository. For more information, please contact Scholarly. INFORMAL CAREGIVER IDENTITY: VOLUNTARY JOB FIT, TEAMWORK, AND TOOLS BY ERICA SPUNT JABLONSKI BA, Clark University, 1989 Master’s Degree, University of Massachusetts-Boston, 2001 DISSERTATION Submitted to the University of New Hampshire in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy in Sociology May, 2019 ALL RIGHTS RESERVED © 2019 Erica Spunt Jablonski ii This dissertation was examined and approved in partial fulfillment of the requirements for the degree of Doctor of Philosophy in Sociology by: Dissertation Director, Dr.

Sharyn Potter, Professor of Sociology Dr. Michele Dillon, Interim Dean and Professor of Sociology Dr. Rebecca Glauber, Associate Professor of Sociology Dr. Kristin Smith, Research Associate Professor of Sociology Dr.

Robert McGrath, Associate Professor, Health Management and Policy On March 21, 2019 Approval signatures are on file with the University of New Hampshire Graduate School. iii ACKNOWLEDGEMENTS Starting at the beginning, I would like to thank my mother for instilling in me a love of learning, and my father for nurturing my inquisitiveness and cultivating a spirit of perseverance in the face of a worthy pursuit. While Judaism informed my desire to do good in the world, my brother Andrew provided a constant role model for behaving decently despite adversity. My grandparents reinforced all of these lessons with their own unique blends of strength and compassion.

Blessed as I was to have such a wonderful family of origin, I have been equally blessed by my husband Stephen who embodies the best traits of these late family members with his fairmindedness and intellectual honesty. I love and appreciate him more than he can know. Because the academic journey is not a solo endeavor, but as with informal caregiving, “takes a village”, I also wish to thank the many “villagers” without whom completion of this dissertation would not have been possible. First to the informal caregivers who agreed to be interviewed despite the emotional nature of their role and the additional time-constraints it imposed upon them.

I would also like to thank my chair, Sharyn Potter, for her patience and flexibility in allowing me to continue down the open- ended path of grounded theory research despite the initial sampling and recruitment challenges that I encountered. I am indebted to Michele Dillon not only for her methodological guidance, but for her constant encouragement. Rebecca Glauber provided invaluable informal caregiving expertise as well as helping me to better distinguish between the foreground and background elements of this work. Kristen Smith and Robert McGrath, each identified areas that required methodological iv specification, as well as to making useful suggestions about clarifying demographic areas, and the role of technology, in future research.

In the academic realm thanks are also due to the many beneficial programs provided by the Graduate School and the University that I found particularly helpful as a long-distance learner. In keeping with the findings of this dissertation, I found the online offerings available through the DoctoralNet program and the Connors Writing Center were especially useful. Nevertheless, I also feel fortunate to have been affiliated with a department containing so many bright, warm, and dedicated individuals. David Finkelhor deserves particular acknowledgement in this regard for convening the thesis and dissertation group which enables students to continue receiving feedback from fellow students engaged in different topic areas and employing different methodologies.

My heartfelt appreciation also goes out to my fellow students whose kindness can best be exemplified by the “study buddies” who facilitated this journey by providing me with lodging in their homes when I had coursework on campus, Jenn Vanderminden, Melissa Busher Day, and Yahayra Michel-Smith. Last, but not least, I wish to acknowledge the invaluable assistance of my many doctoral-level friends and associates for their feedback and support along this journey: Eleanor Abrams, Mike Middleton, Rochelle Woods, Phitsamay Uy, Yeon-Jeong Son, and Ronda Goodale. v EXECUTIVE SUMMARY Although informal caregiving or providing unpaid care to others to enable them to become independent or maintain their independence, has been associated with a wide range of negative physical, psychological, social and financial effects, it is expected to increase for at least the next couple of decades in the United States. While online and offline resources for informal caregivers do exist, they are underutilized, and descriptions of how they are helpful when they are used are often limited by focusing on only one type of caregiver, such as a parent caring for an ill child, or by focusing on only one type of care recipient, such as cancer patients.

Interviewing 25 informal caregivers who cared for those of different ages and conditions about their authentic experiences using resources to help them, provided a picture of who was using the Internet for caregiving, how it was being used, and if it was helpful in similar or different ways than offline resources. Interviews with this difficult to recruit population were conducted between 2015 and 2017, averaging just over 52 minutes. Comparison of interview transcripts and interviewer memos revealed that one’s position on the informal caregiving team and feelings about that position were related to the resources that they used as well as their caregiving experience overall. This study produced many novel findings in these regards with future implications as specified below: (i) Solo caregivers, or those who did not identify other informal caregivers who assisted them with caregiving, were unlikely to acknowledge positive aspects of caregiving and were more likely than other informal caregivers to seek online help.

The only caregiving group that was less likely to vi identify positive aspects of caregiving were those who provided care to peers, although all peer caregivers who used the internet to assist them found it helpful. (ii) Whereas informal caregiving-related Internet use was not universal, users indicated that it could be of equivalent or greater helpfulness than offline resources. While the majority who used the internet for caregiving information depicted it as equally or more helpful than offline resources, all of those using the Internet for emotional support described it as equally or more helpful than offline resources. (iii) Irrespective of a caregiver’s relationship to their care recipient, or their care recipient’s type of condition, informal caregivers reported finding resources helpful in the same ways (e., for preparation and/or adaptation to the role), regardless of whether resources were online or offline.

Given that those who persisted in seeking resources were less likely to use the Internet, but Internet users were more likely to identify positive aspects of caregiving, these findings suggest that the Internet offers a good substitute when offline resources and support are lacking or insufficient. As this was a preliminary, exploratory study, it is recommended that future research examine these findings in greater detail and with larger, more diverse samples. The findings also suggest that other members of the informal caregiving team, beyond primary caregivers alone, be included in future policy and practice discussions to provide more accurate and comprehensive understanding of this complex and dynamic phenomenon. vii TABLE OF CONTENTS ACKNOWLEDGEMENTS.iv EXECUTIVE SUMMARY.vi LIST OF FIGURES AND TABLES.xi CHAPTER PAGE INTRODUCTION.9 Literature Reviews in Grounded Theory.10 Informal Caregiving and Self-identity.11 Informal Caregiving as Prompter of a Potential Identity Crisis.13 Prior Application of Occupational and Non-occupational Concepts to Informal Caregiving.

14 Absence and Presence of Teamwork in Informal Caregiving.22 Concrete Potential Harms of the Informal Caregiving Job. 26 Limitations of National Studies on Potentially Helpful Resources. 26 Research on Interventions for Informal Caregivers.29 Caregiver Perceptions of Appropriate Resources.30 Caregiving-Related Resource Use. INFORMAL CAREGIVING AS A VOLUNTEER JOB.75 Informal Caregiving Described as a Job.75 Informal Caregivers Not Identifying Informal Caregiving as Their Career.77 Identification with the Tasks of the Informal Caregiving Job.79 The Roles of Identity and Relationships in Accepting the "Volunteer" Job.86 Relating Study Participant Reports to Prior Research and Theory.

THE CAREGIVING PROJECT TEAM AND TOOLS.103 Primary Informal Caregivers as Volunteer Coordinators.105 Informal Co-caregivers as Partners.108 Subordinate Informal Caregivers as Assistants or Junior Colleagues.109 viii Formal Caregivers as Contractors and Subcontractors.112 The Care Recipient as Client.114 Informal Caregiving Tools.118 Summary and Relationship to Prior Scholarship. INFORMAL CAREGIVING RESOURCE HELPFULNESS.127 Getting Prepared: What was Helpful Regarding CR's Diagnosis or Prognosis?.129 What was Helpful Regarding a CR's Treatment Options?.136 What was Helpful in Acquiring Skills for the Informal Caregiving Job?.141 What was Helpful in Coping with the Informal Caregiving Job?.151 Summary and Relationship to Prior Scholarship. DISCUSSION AND CONCLUSION.165 Why Conceptualization of Informal Caregiving as a Volunteer Job Matters.166 Enlarging the Caregiving Project Team .169 Relation of Findings to Identity Theory…………………………………………….174 Future Directions in Practice, Policy, and Research: Intervention Proposal.213 Appendix A: Potential National U. Data Sources for Caregiving-related Resources since 2000.214 Appendix B: Published Studies of Caregiving-related Resource Use Including the Internet .217 Appendix C: Peer-reviewed Publications on the Internet and Family/Informal (Home) Caregivers and Caregiving.223 Appendix D: Peer-reviewed Studies of Caregiving-related Internet Resource Use and Its Effects.226 Appendix E: Interview Guide.229 Appendix F: IRB Approval Letters.236 ix LIST OF FIGURES AND TABLES Figure 1.

Phases of Family Caregiving. Distribution of Informal Caregiver Sample Characteristics. The Grounded Theory Coding Process…………………………………………. Informal Caregiver Job Acquisition, Resource Use & Effect Process.

Informal Caregiving Potential Sources of Help. Streamlined Causal Relationship Model between Self-esteem Dimensions and Their Relationship to Study Participant Accounts of Informal Caregiving….176 x ABSTRACT INFORMAL CAREGIVER IDENTITY: VOLUNTARY JOB FIT, TEAMWORK, AND TOOLS by Erica F. Jablonski University of New Hampshire According to the Family Caregiver Alliance, an informal or family caregiver is “an unpaid individual. involved in assisting others with activities of daily living and/or medical tasks.” As informal caregiving in the United States has increased, research on the topic has been published in a myriad of disciplines (e., sociology, nursing, social work, and medicine).

The literature has defined informal caregivers (ICGs), described their role and its impacts, detailed the costs and benefits of informal caregiving, and evaluated interventions to assist ICGs. Scholars have also investigated more natural, less experimental use of informational and support resources for ICGs than, for example, interventions via informational websites or support groups, but they have not thoroughly explored their effects. This study used semistructured interviews with ICGs catering to care recipients (CRs) with various conditions and characteristics (e., ages) to explore ICGs’ authentic use of caregiving-related resources for providing care and for coping with the often complex and fluctuating demands of their role. Using a theoretical sample of 25 ICGs, this grounded theory study yielded a number of findings.

Study participants’ comments revealed that they conceived of informal caregiving as more akin to a volunteer job than xi to a career. Because the study sample contained primary, secondary, and other nonprimary caregivers, I observed that the participant’s position in the caregiving project team, in conjunction with overall team functioning, influenced their caregiving experience. The proportion of helpful resources relative to unhelpful resources, however, was not related to whether or not ICGs identified positive aspects of the job. The quality of relationships with other members of the formal and informal caregiving team proved to have more influence on whether or not ICGs identified any positive aspects of the job.

In addition, the Internet proved to be a largely beneficial caregiving tool for those who used it. Although the Internet was most often used to seek information, it helped ICGs cope by enabling them to build personal coping resources and by offering social support by connecting users to similar others.