THE EFFECT OF MY HEALTH COMPANION© ON SELF …

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THE EFFECT OF MY HEALTHCOMPANION© ON SELF-MANAGEMENTAND QUALITY OF LIFE IN PERSONS WITHEND STAGE RENAL DISEASE: A MULTIPLECASE STUDY APPROACHJulie D. LemingUniversity of Texas at Tyler

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Recommended CitationLeming, Julie D., "THE EFFECT OF MY HEALTH COMPANION© ON SELF-MANAGEMENT AND QUALITY OF LIFE INPERSONS WITH END STAGE RENAL DISEASE: A MULTIPLE CASE STUDY APPROACH" (2018). Nursing Theses andDissertations. Paper 85.http://hdl.handle.net/10950/1172

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THE EFFECT OF MY HEALTH COMPANION© ON SELF-MANAGEMENT AND

QUALITY OF LIFE IN PERSONS WITH END STAGE RENAL DISEASE: A

MULTIPLE CASE STUDY APPROACH

by

JULIE LEMING

A dissertation submitted in partial fulfillment

of the requirements for the degree of

Ph.D.

School of Nursing

Barbara Haas, Ph.D., RN, Committee Chair

College of Nursing and Health Sciences

The University of Texas at Tyler

May 2018


Tyler, Texas

This is to certify that the Doctoral Dissertation of

JULIE LEMING

has been approved for the dissertation requirement on

April 5, 2018

for the Ph.D. degree

Approvals:

__________________________________

Dissertation Chair: Barbara Haas, Ph.D.

__________________________________

Member: Melinda Hermanns, Ph.D.

__________________________________

Member: Zhaomin He, Ph.D.

__________________________________

Member: Della Connor, Ph.D.

__________________________________

Chair, School of Nursing

__________________________________

Dean, College of Nursing & Health Sciences

© Copyright 2018 by Julie Leming

All rights reserved.

Dedication

This is dedicated to David Stanley Weaver, Sr. Uncle Dave, you were so much more than

my uncle. You were a living, breathing portrait of the love of Jesus Christ, an example of

self-less servanthood and sacrificial love. I am endlessly thankful for every additional

precious moment that hemodialysis gave us with you.

Acknowledgements

It is my honor and pleasure to acknowledge many faculty members, family

members, and friends who provided their love and support throughout my doctoral

education. First and foremost, I would like to thank my dissertation committee Chair, Dr.

Barbara Haas. There are no words to adequately express my gratitude for her kindness,

encouragement, and inspiration. Special thanks to my committee members, Dr. Melinda

Hermanns, Dr. Zhaomin He, and Dr. Della Connor for their suggestions, guidance, and

assistance with the dissertation process. In addition, I would like to thank Dr. Lynn

Wieck, the first person to ever make me think this was possible.

This journey would not have been worth the sacrifice without the encouragement

and unselfish love of my husband, Terry Don. Thank you for your faithful support, for

believing in me when I doubted myself, and for allowing me to pursue my dreams even

when you do not share them. I would like to thank my mother, Chris Boaze, for support

when I was building the foundation for this step. Thank you for the memories. I would

like to express my heartfelt gratitude to my faithful cheerleaders, Jamie and Brittney

Leming, and John Clark. Thank you for always finding the good in me, even when it was

hidden beneath stress and tears. Also, I would like to thank my daughter, Amber Clark,

for walking beside me through this. You manage to always see me as I hope to be,

inspiring me to be better. It is your turn now.

Thank you to my work family for the encouragement. Annissa Jackson, I am

indebted to you for getting the ball rolling and for your continued faith and flexibility.

Ashley Brewster, you began as a great co-worker who had my back and picked up the

slack with such a sweet spirit. You have become a treasured friend.

Thank you to the wonderful faculty at the University of Texas at Tyler, School of

Nursing. It has been a privilege to learn from such extraordinary nurse scholars and

remarkable women.

i

Table of Contents

List of Tables ...................................................................................................................... v

List of Figures .................................................................................................................... vi

Abstract ............................................................................................................................. vii

Chapter 1 Overview of Research Study .............................................................................. 1

Introduction to the Articles ............................................................................................. 2

Chapter 2 The Emotional Toll of End-Stage Renal Disease: Differentiating Between

Social Isolation, Loneliness, and Disengagement............................................................... 6

Abstract ........................................................................................................................... 6

Social Isolation................................................................................................................ 8

Concept Identification ................................................................................................. 8

Defining Attributes ................................................................................................... 10

Antecedents and Consequences ................................................................................ 11

Loneliness ..................................................................................................................... 11

Concept Identification ............................................................................................... 12



Disengagement .............................................................................................................. 14

Concept Identification ............................................................................................... 15



Concept Comparison ..................................................................................................... 17

ii

Conclusions and Recommendations ............................................................................. 19

References ......................................................................................................................... 22

Chapter 3 The Effect of My Health Companion on Self-Management and Quality of Life

in Persons with End Stage Renal Disease: A Multiple Case Study Approach ................. 28

Abstract ......................................................................................................................... 28

Review of Literature ..................................................................................................... 31

Self-management ...................................................................................................... 31

Self-efficacy .............................................................................................................. 32

Quality of Life........................................................................................................... 33

Social Support ........................................................................................................... 33

My Health Companion© ............................................................................................ 34

Theoretical Model ......................................................................................................... 35

Research Questions and Propositional Statements ....................................................... 36

Design ........................................................................................................................... 37

Methods......................................................................................................................... 37

Sample....................................................................................................................... 37

Instruments ................................................................................................................ 38

Self-efficacy. ......................................................................................................... 38

Quality of Life....................................................................................................... 39

Social Support. ...................................................................................................... 40

Semi-structured Interview. .................................................................................... 41

Intervention. .......................................................................................................... 41

iii

Data Collection ......................................................................................................... 42

Analysis..................................................................................................................... 43

Findings......................................................................................................................... 44

Deductive Analysis ................................................................................................... 48

Social support........................................................................................................ 48

Self-efficacy. ......................................................................................................... 49

Quality of life. ....................................................................................................... 51

My Health Companion©. ...................................................................................... 53

Inductive Analysis .................................................................................................... 54

Hope. ..................................................................................................................... 54

Control. ................................................................................................................. 55

Discussion and Conclusion ........................................................................................... 56

References ......................................................................................................................... 60

Chapter 4 Results and Discussion ..................................................................................... 67

References ......................................................................................................................... 70

Appendix A. Adapted Conceptual Model of Adaptation to Chronic Illness .................. 744

Appendix B. Permission to Use Model........................................................................... 755

Appendix C. Permission to Publish .................................................................................. 80

Appendix D. Recruitment Flyer ...................................................................................... 811

Appendix E. Initial IRB Approval .................................................................................. 822

Appendix F. Amended IRB Approval ............................................................................ 922

Appendix G. Second IRB Amendment ........................................................................... 977

iv

Appendix H. Demographic Information ....................................................................... 1022

Appendix I. Self-Efficacy for Managing Chronic Disease 6-Item Scale ...................... 1044

Appendix J. FACIT-F ................................................................................................... 1055

Appendix K. FACIT-F Scoring Guidelines .................................................................. 1099

Appendix L. Personal Resource Questionnaire (PRQ2000) ......................................... 1122

Appendix M. Permission to use PRQ2000 ................................................................... 1133

Appendix N. Informed Consent .................................................................................... 1144

Appendix O. Semi-structured interview-Participant..................................................... 1188

Appendix P. Semi-structured interview-Caregiver ....................................................... 1199

Biographical Sketch .................................................................................................... 12020

v

List of Tables

Table 1. Specfic Characteristics of Social Isolation, Loneliness, and Disegnagement .... 18

vi

List of Figures

Figure 1. Social support scores over time. ...................................................................... 466

Figure 2. Self-efficacy scores over time. ........................................................................ 466

Figure 3. Quality of life scores over time. ...................................................................... 477

vii

Abstract

THE EFFECT OF MY HEALTH COMPANION© ON SELF-MANAGEMENT AND

QUALITY OF LIFE IN PERSONS WITH END STAGE RENAL DISEASE: A

MULTIPLE CASE STUDY APPROACH

Julie Leming

Dissertation Chair: Barbara Haas, Ph.D.


May 2018

End stage renal disease (ESRD) is the fifth and final stage of chronic kidney disease.

Persons with ESRD face significant challenges to quality of life when undergoing renal

replacement therapy with hemodialysis. Complex medical regimens accompanied by

severe physical discomforts related to both ESRD and dialysis can take a serious

emotional toll. Two manuscripts presented in this dissertation portfolio explore the issues

facing this population. First, a comparative concept analysis explores three potential

psychosocial responses for which nurses are uniquely positioned to intervene. A second

manuscript details a multiple-case study with embedded units of analysis that aimed to

test the Conceptual Model for Adaptation to Chronic Illness in persons on hemodialysis.

The study also evaluated the use of a low-tech personal health record as a tool for self-

management in persons undergoing hemodialysis. Study findings suggest a low-tech

approach to self-management may be beneficial in a targeted population of ESRD

patients.

1

Chapter 1

Overview of Research Study

End stage renal disease (ESRD), the fifth and final stage of chronic kidney disease

is characterized by a glomerular filtration rate (GFR) below 15ml/min/1.73m2 and is

referred to as kidney failure (United States Renal Data System, 2017). Persons with

ESRD require peritoneal dialysis, hemodialysis, or transplantation for survival (National

Institute of Diabetes and Digestive and Kidney Disease, 2018). In hemodialysis, the

blood is removed through vascular access, passes by the dialysis solution in an external

machine, and is then returned (Trakalo, 2015). Duration of dialysis varies, but in general,

persons on hemodialysis in-center attend three times each week for four to five hours

each day. Persons using hemodialysis for renal replacement therapy are faced with

complex medication regimens (McKillip, 2013), fatigue (Lee, Kim, & Kim, 2015), and

severe dietary and fluid restrictions that result in increased levels of stress (Jiang, 2015)

and anxiety (Alsharaifeen, McCreaddie, & Evans, 2014), depression (Chan et al., 2011;

Gerogianni et al., 2014; Lee et al., 2015; Weisbord, 2016), decreased family functioning

(Jiang, 2015), and decreased quality of life (Griva, et al., 2014; United States Renal Data

System, 2017).

Persons undergoing in-center hemodialysis are at increased risk for social

impairment due to the significant changes that are necessary. One study found that urban

patients drove 7.9 miles one-way while rural patients drove 2.5 times farther (Stephens et

al., 2013). The commute, in addition to time on dialysis, can take up a significant portion

of the day, after which the patient is often severely fatigued. Persons on dialysis often

2

have multiple co-morbidities (United States Renal Data Systems, 2017) that result in

appointments with healthcare providers that must be scheduled on non-dialysis days.

Increasing this risk is the frequent need for dialysis patients to discontinue working

outside the home due to scheduling issues and severe fatigue. Added stressors of

functional decline, financial burden, impaired social support, and psychological distress

have been identified as factors affecting quality of life in dialysis patients (Weisbord,

2016). Understanding factors that affect quality of life is essential in developing

interventions to promote patient-centered care that encourage self-management and

improve outcomes for persons living with dialysis. The purpose of the study was to

evaluate the use of a low-tech personal health record as a self-management tool in the

hemodialysis population. The My Health Companion©, a personal health record, was

developed to provide a means by which one with chronic illness could maintain personal

health information for taking a more active role in health decisions (Weinert, Cudney, &

Kinion, 2010). It was aimed at patients in rural areas where access to technology may be

reduced. Additionally, the study aimed to test the Conceptual Model for Adaptation to

Chronic Illness (Weinert, Cudney, & Spring, 2008; see Appendices A and B) in men and

women living with hemodialysis.

Introduction to the Articles

The research in this dissertation portfolio began with a comparative concept

analysis on three psychosocial concepts persons may face as they cope with the long-term

consequences of living on dialysis: social isolation, loneliness, and disengagement

(Leming, J., 2016; see Appendix C). Psychosocial factors in adaptation are important in

3

determining “overall psychological well-being and indirectly impact on their QoL” (Chan

et al., 2011, p. 462). Defining attributes, antecedents, preventive considerations, and

consequences are identified for each concept. Nurses are the health care professionals

with whom persons on dialysis have the most contact. As such, they are uniquely

positioned to assess and intervene early for patients who exhibit signs of impaired social

well-being. This analysis is reported in Chapter Two, titled The Emotional Toll of End-

Stage Renal Disease: Differentiating Between Social Isolation, Loneliness, and

Disengagement.

Following the concept analysis, a quasi-experimental one group pre-test/posttest

study was planned to determine the effect of My Health Companion© on self-

management and quality of life in patients on hemodialysis. A convenience sample of 62

participants was estimated using G* Power 3.1 (Faul, Erdfelder, Lang, & Buchner, 2007)

for medium effect size with consideration for attrition (Polit & Beck, 2012). Recruitment

flyers (see Appendix D) were developed to place in waiting rooms of local dialysis

centers with researcher contact information listed. Institutional Review Board (IRB)

approval was obtained (See Appendix E). Application was made for permission to

conduct research through the research department of a local dialysis company. Months of

telephone calls, personal visits, emails, and assistance from the research department were

unsuccessful in obtaining permission from the local nephrologists, a requirement for

finalization of the application with the local dialysis company. Recruitment procedures

were revised to include recruitment by placing flyers at businesses, churches, and on

4

social media. IRB approval was amended (see Appendix F). After months of no response,

the study was redesigned and IRB approval was again amended (see Appendix G).

A multiple-case study with embedded units of analysis was used to examine the

effects of My Health Companion© on self-management and quality of life in patients on

hemodialysis. Embedded units of analysis included standard demographic plus length of

time on dialysis (see Appendix H), Self -Efficacy for Managing Chronic Disease 6-Item

Scale (see Appendix I), Facit-F (see Appendices J and K), Personal Resource

Questionnaire (PRQ2000; see Appendices L & M). The study also tested the Conceptual

Model for Adaptation to Chronic Illness in the dialysis population. Although My Health

Companion© had been tested in patients with a variety of chronic illnesses (Weinert &

Cudney, 2012), it had not been tested exclusively in patients with ESRD. While the

intervention had been tested in women living in rural areas, only one study included men

(Weinert & Cudney, 2012). Three participants were recruited through various methods.

Each participant was asked to utilize the My Health Companion© for twelve weeks.

Baseline data were collected after informed consent was obtained (see Appendix N).

Follow-up data were collected at 6-weeks and 12-weeks. At the 12-week collection point,

individual semi-structured interviews (see Appendix O) were conducted to further inform

the experience of living with hemodialysis and the usefulness of My Health Companion©

as a tool for self-management. Primary caregivers were interviewed (see Appendix P)

when available.

Quantitative data were evaluated individually using a pattern-matching technique

(Almutairi, Gardner, & McCarthy, 2013) followed by a graphing of the collective data to

5

assess for patterns between participants. Deductive and inductive analysis of the

qualitative data were performed to use a similar pattern-matching technique. The

empirical patterns were then compared to the theoretical patterns. Where empirical

patterns did not support theoretical patterns, explanation building was used to gain further

understanding (Yin, 2014). Results of this study, titled The Effect of My Health

Companion© on Self-Management and Quality of Life in Persons with End Stage Renal

Disease: A Multiple Case Study Approach, are reported in Chapter Three.

Chapter Four culminates in a summary and conclusion. Limitations of current

study and validity of this research are summarized. Recommendations for future research

and implications for nursing practice are addressed in concluding remarks.

6

Chapter 2

The Emotional Toll of End-Stage Renal Disease:

Differentiating Between Social Isolation, Loneliness, and Disengagement

Abstract

The terms social isolation, loneliness, and disengagement are used frequently in

chronic illness with little consensus regarding the meaning and association between them.

Examining the concepts provides a greater understanding of the role each plays in the

well-being of patients and guides health care workers in prevention and early recognition.

This manuscript presents a modified version of Walker and Avant’s (2011) method of

concept analysis to differentiate and identify the most appropriate ways to study and

overcome the various challenges facing patients with end-stage renal disease. Defining

attributes, antecedents, and consequences are identified. Further illustration of the

concepts is provided using a side-by-side comparison including preventive considerations

and nursing action plans.

7

Humans have an innate need to engage with others, to communicate

interpersonally, and to participate in mutually satisfying relationships (Linz & Sturm,

2013). This engagement is particularly important for patients managing severe or long-

term health problems such as end-stage renal disease (ESRD). Long-term management

affects every aspect of the patient’s life: physical, financial, social, and emotional. Three

similar but distinct concepts are often offered as a basis for evaluating interpersonal

relationships; they are social isolation, loneliness, and disengagement (Coyle & Dugan,

2012; Dury, 2014; Johnson & Mutchler, 2014; Stein & Tuval-Mashiach, 2014). When

nurses encounter patients in the throes of managing chronic kidney disease, they have

important questions to consider: If you are facing social isolation, are you automatically

lonely? Can you be lonely when you have a large social network? Is disengagement

automatic or even probable when you are facing social isolation and/or loneliness?

Exploring how these three concepts may affect each other must begin with a clear

understanding of what each one means and how they are the same or different.

A concept analysis helps clarify ambiguous concepts by producing an operational

definition, defining attributes, antecedents, and consequences (Walker & Avant, 2011).

This paper presents a comparative concept analysis on social isolation, loneliness, and

disengagement to define each, and differentiates them from one another. A modified

version of the Walker and Avant (2011) method is utilized for this analysis.

Differentiation of the concepts is particularly important in planning research with chronic

kidney disease so that targeted measurements and interventions can be aimed at the exact

problem with the most potential to actually help the situation. Using the terms

8

interchangeably is a disservice if their meanings are singularly different, and confounds

possible interventions and solutions. The purpose of this paper is two-fold: To

differentiate the terms and to identify the most appropriate term for studying the various

challenges for patients facing long-term, debilitating disease management.

Social Isolation

Social isolation has been the subject of research for a number of years, yet there

remains a degree of inconsistency in how it is defined and measured. In spite of the

technological advances of the recent decades, human social relationships remain a

significant issue affecting the physical and psychosocial health of many populations.

Studies have associated social isolation with severe mental illness (Linz & Strum, 2013),

mortality (Pantell et al., 2013), increases in systolic and diastolic blood pressure

(Shankar, McMunn, Banks, & Steptoe, 2011), and perceived stress (Webel et al., 2014).

It has been used synonymously with social support and small social networks (Nicholson,

2009), and classified as both objective (Linz & Sturm, 2013; Shimada et al., 2014) and

subjective (Hawthorne, 2008; Nicholson, 2009; Warren, 1993). A lack of a consistent

definition of the concept makes measurement difficult and fosters use of various

measures, which can result in conflicting data (Pettigrew, Donovan, Boldy, & Newton,

2014).

Concept Identification

The Merriam-Webster dictionary does not define social isolation as a construct,

but defines each term individually. Social is defined as “tending to form cooperative and

interdependent relationships with others” ("Social", n.d.,). Social appears to be the

9

opposite of isolation with its focus on relationships with others. Isolation is defined as

“the state of being in a place or situation that is separate from others” ("Isolation", n.d.).

Merriam-Webster also provides medical definitions of “a segregation of a group of

organisms from related forms in such a manner as to prevent crossing” and “a

psychological defense mechanism consisting of the separating of ideas or memories from

the emotions connected with them” (“Isolation”, n.d.). All of these definitions have a

predominant theme of separateness.

Social isolation has been studied in the severely mentally ill and is defined as “a

state of being unintentionally alone, with a lack of fulfilling social connection, resulting

in the subjective experience of loneliness and distress” (Linz & Sturm, 2013, p. 245).

Linz and Sturm (2013) identify three constructs of social isolation that relate to severe

mental illness: stigma, alienation, and loneliness. These notions of stigma, alienation, and

loneliness are echoed in Pollack’s (2009) work on criminalized women. In a concept

analysis of social isolation in older adults, Nicholson (2009) proposed that it is “a state in

which the individual lacks a sense of belonging socially, lacks engagement with others,

and has a minimal number of social contacts and they are deficient in fulfilling and

quality relationships” (p. 1346). Dury (2014) utilizes the same three ideas when studying

the elderly. Another study defines social isolation as having limited contact with people

and loneliness or perceived social isolation as the psychological counterpart (Shankar et

al., 2011), whereas Pettigrew et al. (2014) outline two separate components of social

isolation: objective and subjective. Finally, Zavaleta, Samuel, and Mills (2014) define

social isolation as the lack of quality and quantity of social relationships with other

10

people at the different levels of human interaction, such as individual, group, community,

and the larger social environment. These definitions focus on the idea of separateness

from the group.

Defining Attributes

Defining attributes are the characteristics that are most frequently associated with

the concept of social isolation. When listed, the defining attributes should immediately

bring the concept to mind (Walker & Avant, 2011). The defining attributes of social

isolation are:

1. Lack of quality relationships with persons in social network

2. Lack of engagement with others

3. Absence of a sense of belonging

4. Lack of fulfilling relationships

The number of members of the social network is less important than the quality of the

relationships with the members of the social network. One can have a large social

network and yet still experience social isolation if the members of the network are

unreliable, uncaring, or provide only superficial relationships (Nicholson, 2009). Lack of

engagement can be failure to call friends or family, or being unable or unwilling to

contact because of other barriers such as the inability to use the telephone or fear that

friends are uninterested in hearing the details of what is being experienced. One can be in

a room full of people yet not engage in socialization and, therefore, be socially isolated.

The need for love and a sense of belonging is a basic human need, which prevents a

person from feeling or being socially isolated. Absence or lack of fulfilling relationships

11

is an attribute of social isolation because one can socially engage with others without

feeling fulfilled and still feel socially isolated. Although launching new friendships may

be more challenging later in life, there is a need to join with others who think in a similar

way and can be trusted (Pettigrew et al., 2014) and to strengthen relationships based on

shared experience (Stein & Tuval-Mashiach, 2014).

Antecedents and Consequences

Antecedents are those events or circumstances that must be in place prior to the

manifestation of the concept (Walker & Avant, 2011). Antecedents related to social

isolation include a prohibitive environment, and physical and psychological barriers

(Nicholson, 2009). Restrictions imposed by dialysis schedules (Tanyi & Werner, 2008;

Yodchai, Dunning, Hutchinson, Oumtanee, & Savage, 2011), physical effects of

headache, nausea, fatigue, and weakness, as well as anger and depression, impact social

activity (Başkale & Başer, 2011), thus increasing the risk for social isolation in those

living with ESRD. Consequences are those events that occur because of the concept.

Consequences of social isolation include development of negative coping strategies

(Warren, 1993), and cardiovascular disease, diabetes, smoking, and depression (Cacioppo

& Cacioppo, 2014) and loneliness (ElSadr, Noureddine, & Kelley, 2009). Social isolation

definitely depends on an unfulfilled need of some kind involving other persons, but it is

unclear if it is the same as loneliness or if loneliness is an inevitable outcome.

Loneliness

The concept of loneliness is similar to social isolation, but there are distinct and

important differences. Studies show a correlation between loneliness and fatigue with

12

self-care with hemodialysis patients (Akin, Mendi, Ozturk, Cinper, & Durna, 2013) as

well as sexual frequency, communication, satisfaction, avoidance and sensuality (Koҫ &

Saglam, 2013). Loneliness has also been associated with the reporting of a mental health

diagnosis (Coyle & Dugan, 2012), as well as depression, social isolation, and greater

likelihood of specific negative health behaviors (Shankar et al., 2011). Loneliness may be

more of a personal feeling than social isolation, which is reflected by a more external

focus.


Loneliness is defined by Merriam-Webster as “being without company,” “cut off

from others,” “sad from being alone,” and “producing a feeling of bleakness or

desolation” (“Loneliness”, n.d.). Peplau and Perlman (1982) suggest that loneliness is a

subjective experience resulting from a deficiency in social relationships. It is a product of

individual valuation of the number of interpersonal relationships, the quality of those

relationships, and individual standard for those relationships (Coyle & Dugan, 2012; de

Jong Gierveld, Keating, & Fast, 2014). Hence, loneliness is not a factor of having no or

few friends or visitors; it is more akin to a feeling of dissatisfaction with the quality,

number, and/or frequency of interactions, which leaves one with negative feelings such as

sadness, anger, hostility, futility, abandonment, or guilt.

Defining Attributes

The defining attributes of loneliness are:

1. Sense of alienation

2. Interpersonal isolation

13

3. Distressed reactions

A sense of alienation involves a feeling of separation or estrangement, and may

be from one’s self (Bekhet, Zauszniewski, & Nakhla, 2008) or from others (Kvaal,

Halding, & Kvigne, 2013; Stein & Tuval-Mashiach, 2014). In a study on Israeli veterans

of combat and captivity, the sense of alienation was described as living in “a different

world” and “not connected to anything” (Stein & Tuval-Mashiach, 2014, p. 4). Bekhet et

al. (2008) describe the self-alienation as having two components: emptiness and

depersonalization. Interpersonal isolation refers to the feeling of being alone, which can

be social, geographic, or emotional in nature (Bekhet et al., 2008; Kvaal et al., 2013). It is

important to note that interpersonal isolation refers to a feeling, and that even one with

many social connections may still experience loneliness (Coyle & Dugan, 2012).

Distressed reactions may be physiological, behavioral (Bekhet et al., 2008), or

psychological (Coyle & Dugan, 2012). These reactions may also include headaches and

upset stomach (Bekhet et al., 2008), depression (Shankar et al., 2011), and decrease in

self-care (Akin et al., 2013).


The primary antecedents of loneliness are a personal dissatisfaction with the

quality of one’s interpersonal relationships (ElSadr et al., 2009) and the inability to reach

out or see the need to reach out to others for help (Coyle & Dugan, 2012). Consequences

of loneliness include: negative emotions (Kvaal et al., 2013), decrease in self-care (Akin

et al., 2013), passivity in social interactions (Qualter et al., 2015), lower self-reported

health measures and increased reporting of mental health diagnosis (Coyle & Dugan,

14

2012), and depression (Shankar et al., 2011). The negative and more passive reaction to

feelings of loneliness may set the stage for a person to actually disengage from the social

structure.

Disengagement

A broad understanding of disengagement is essential for nurses caring for clients

with ESRD because they are in a unique position to assess disengagement capacities of

patients. Patients with poor disengagement capacities may be more likely to experience

depressive symptoms than those with better disengagement capacities (Dunne, Wrosch,

& Miller, 2011). Other than the primary caregiver, nurses often have the most contact

with patients with chronic illness. In order to provide holistic care and ensure patients

maintain optimal well-being, nurses must evaluate patients at each encounter for

disengagement and make appropriate referrals where disengagement is maladaptive or

debilitating.

Disengagement theory is a social-psychological theory of aging that suggests that

disengagement is the inevitable process of dissolving relational ties between a person and

society; some consider it a normal part of the aging process (Johnson & Mutchler, 2014;

Reed, 1970). It has been contrasted with continuity theory, which suggests that healthy

aging requires continuing previous roles or similar roles to maintain a positive

contribution to society. A third theory on aging, which is in contrast to disengagement

theory, is activity theory. Activity theory suggests that successful aging occurs when the

elderly participate in new activities to help avoid motivation toward disengagement

(Robinson & Stell, 2015).

15


The Merriam-Webster dictionary defines disengage as “to separate from someone

or something, to stop being involved with a person or group, to stop taking part in

something” ("Disengage", n.d.). In their concept analysis on connection in older adults,

Stovall and Baker (2010) cite bond and association as defining attributes of connection.

Connection might be considered contrary to disengagement. In the literature,

disengagement is largely discussed as the response to a threat to one’s self-esteem or

social identity, and refers to disengaging from a particular domain (Cheng & McCarthy,

2013; Leitner, Hehman, Deegan, & Jones, 2014) or a particular group in which one

experiences negative stereotypes (Pagliaro, Alparone, Pacilli, & Mucchi-Faina, 2012).

Psychological disengagement involves using discounting and devaluing as an approach

for dealing with differential treatment and other factors based on groups (Laplante,

Tougas, Lagacé, & Bellehumeur, 2010). One study defined disengagement as a

dissociation of self-esteem from feedback received (Tougas, Rinfret, Beaton, & de la

Sablonnière, 2005). Leitner et al. (2014) use the term adaptive disengagement to describe

disengagement across a variety of situations and domains in response to environmental

cues, which are not limited to stigmatized feedback.

Defining Attributes

Defining attributes of disengagement are:

1. Dissociation from a particular group or domain

2. Absence of association or bond with others

16

Dissociation from a particular group or domain may include work, volunteerism,

civic organizations, social networks, and goals, which become perceived as unattainable

(Laplante et al., 2010; Wrosch, Rueggeberg, & Hoppmann, 2013). This dissociation may

be an attempt to buffer the emotional consequences of discrimination, negative feedback,

or personal failure; however, in other circumstances, it may be an endeavor to find respite

and replenish personal resources (Coyle & Dugan, 2012). Absence of association or bond

with others may be evidenced by not thinking about a particular domain or by physically

withdrawing from a particular domain or group (Wrosch et al., 2013). Adaptive

disengagement may be seen as a self-protective process (Leitner et al., 2014) when

remaining part of the group or process is seen as too overwhelming or threatening to

continue.


The precursors of disengagement include a perceived threat to one’s self-esteem

or social identity, discounting feedback, and devaluing the domain. Perceived threats to

one’s self-esteem or social identity vary between individuals and over the life span. The

elderly are at risk for threats related to ageism in addition to disabilities associated with

many chronic illnesses. Discounting feedback refers to attributing less credibility to

negative feedback received, whereas devaluing refers to withdrawal from a particular

domain or group, generally after discounting has occurred (Laplante et al., 2010).

Consequences or the possible outcomes of disengagement depend on whether

disengagement is adaptive or maladaptive. Consequences of adaptive disengagement

include maintaining social identity, increased stress management, increased multiple role

17

management, recovering personal resources (Cheng & McCarthy, 2013), and reduced

negative mood and increased overall well-being (Dunne et al., 2011). Consequences of

maladaptive disengagement are role conflict, poor stress management, feelings of failure,

loneliness, and depression. Whether the disengagement is adaptive or maladaptive

depends on the perception of the person involved. For all three concepts (social isolation,

loneliness, and disengagement), nursing actions are focused on mitigating the negative

aspects or outcomes associated with the concept.

Concept Comparison

Although all three concepts have a negative connotation associated with each in

some way, there do appear to be distinct levels of intensity and varied need for action.

Social isolation is having inadequate quality and quantity of social relations with other

people. It is manifested as an involuntary loss of one’s ability to affiliate with a group.

An elderly man whose last close friend has just died might find himself socially isolated

because of his thrice-weekly hemodialysis schedule. Disengagement is similar to social

isolation, but it manifests as the voluntary withdrawal from groups. It might be

considered as a mental or physical process that occurs in response to a threat to one’s

self-esteem or social identity. Although it might be voluntary, withdrawal could still be

seen as desirable or undesirable by the individual. An aging woman might drop out of her

book club due to post-dialysis fatigue Both social isolation and disengagement are

distinct from loneliness, which is a measure of one’s reaction to the quality of

relationships or the absence of the relationships. Loneliness is a negative emotion that

sometimes results from social isolation or disengagement, but it can also be present when

18

neither of these other situations exists. One can be lonely in the midst of other people if

no personal joy or satisfaction is perceived to be possible. Although all three concepts

have a degree of negativity associated with them, it seems clear that how the person

reacts to the situation is the key to long-term consequences and appropriate nursing

interventions. There also appears to be an implied sequence to the concepts, although it is

not finite or inevitable. The level at which one is able to adapt to the situation appears to

influence whether it has a negative (maladaptive) or neutral (adaptive) effect Because of

the negative aspect of the overarching idea of being alone, no positive aspects were

identified. At best, adaptation to the situation could be seen as possibly “not negative,”

but it is doubtful if any of the concepts could be portrayed as positive Even the elderly

lady who disengaged from her book club might find relief from the gossip (a neutral

response), but not necessarily happiness at her loss of social interaction. Table 1 provides

a comparison of the three concepts.

Table 1. Specific Characteristics of Social Isolation, Loneliness, and Disengagement

Characteristics Social Isolation Loneliness Disengagement

Defining Attributes • Lack of quality

relationships with

members of a

social network

• Lack of engagement

with others

• Absence of sense of

belonging

• Lack of fulfilling

relationships

• Sense of alienation

• Interpersonal feeling

of isolation

• Distressed reactions

• Dissociation from a

particular group or

domain

• Absence of

association or bond

with others

Patient Situation Involuntary loss of

group affiliation

Reaction to loss of

group affiliation

Voluntary withdrawal

from group(s)

Possible Causes

(Antecedents)

Prohibitive or

restrictive environment

or circumstances;

Physical or

psychological barriers

Personal dissatisfaction

with the quality of

interpersonal

relationships;

Perceived threat to self-

esteem or social

identity;

Discounting and

devaluing the domain

19

Table 1. (Continued)

Inability to reach out or

to see the need to reach

out to others

Preventive

Considerations

Change environment –

address reasons for

restrictions;

Change physical limits

– recovery, therapy or

rehabilitation to

decrease limitations;

Change attitude –

identify psychological

issues and refer for

assistance

Explore new group

options for association;

Determine if loneliness

is perceived as a

problem to patient

Help client deal with

threat;

Understand why

domain is/has become

undesirable;

Accept patient decision

to withdraw is a

possibility

Outcomes

(Consequences)

Negative coping skills;

mental and

psychological threats;

chronic disease

susceptibility;

loneliness

Feeling empty;

confused identity;

distressed reactions;

negative emotions; self-

care deficits; passive in

social interactions; low

health perception;

mental health

manifestations;

disengagement;

depression

Social identity; able to

manage stress and

multiple roles; recovery

of personal resources;

satisfaction or

dissatisfaction with

social support; role

conflict; feelings of

failure; loneliness;

depression

Nursing Action Plan Social isolation is

identifiable to the nurse

when the patient or

caregiver comments on

how alone or isolated

they feel. Simple

referral to a support

group may not work if

there are mobility

restrictions, so online

resources might be an

option.

Loneliness is

sometimes identifiable

through patient or

caregiver comment but

often must be

investigated by the

nurse. A variety of

loneliness scales are

available. Exploration

into the nature of the

source of loneliness can

provide direction for

referral and

intervention. Meals on

Wheels might be a low

cost intervention

Disengagement is the

result of stressors or

threats in the patient’s

life. The ability to

adaptively disengage

can be measured on a

brief scale or the patient

and caregiver can be

questioned specifically

to determine if situation

needs intervention.

Depending on severity,

referral can be made

but online support

groups.

Conclusions and Recommendations

The debilitating effects experienced by individuals with ESRD negatively impact

their physical and socio-emotional well-being. Early recognition of restrictive

environments, personal dissatisfaction with interpersonal relationships, and perceived

20

threats to self-esteem or social identity allow for intervention and prevention of long-term

mental and physical consequences. All patients with ESRD should be evaluated for social

isolation, loneliness, and disengagement. Comprehensive assessment of social network

on admission to acute care facilities can provide discharge planners with vital information

and time to make appropriate referrals to community groups. Online support groups exist

for a number of chronic diseases and may be a viable alternative when physical barriers

prevent face-to-face social interaction. Education regarding online safety and follow-up

are required to ensure the effectiveness of online support groups. For patients unable to

safely access online support, face-to-face support groups are available in many

communities. Nurses in outpatient settings such as pre-dialysis clinics or dialysis units

can ask probing questions while providing care: Do you have friends you talk with? Do

you feel lonely? How much time do you spend alone? What do you do when you’re

alone? These questions not only provide the nurse with insight on the patient’s socio-

emotional status, but may also foster an improved nurse-patient relationship as the patient

perceives caring from the nurse. Answers to these questions can help the nurse determine

if further evaluation of social isolation, loneliness, or disengagement is needed.

Further research is needed to develop effective interventions to mitigate social

isolation, loneliness, and disengagement in the elderly with ESRD. Comparative studies

are needed to establish the effectiveness of online interventions and low-cost face-to-face

interventions and also to determine access and safety issues with online interventions for

this patient population in rural and urban areas. Quantitative studies are needed to

evaluate the effects of these concepts on self-care and disease management. Longitudinal

21

studies are needed to better understand socio-emotional issues faced over the trajectory of

chronic illness. As the ESRD population continues to grow, development of interventions

to improve their well-being will benefit the patient and family, the health care delivery

system, and society in general.

22

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Chapter 3

The Effect of My Health Companion© on Self-Management and Quality of Life in

Persons with End Stage Renal Disease: A Multiple Case Study Approach

Abstract

Persons with end stage renal disease often experience lower quality of life than

the general population due to the complex medical regimen and strict dietary and fluid

restrictions necessary for survival. Appropriate self-management often improves

physiological outcomes and quality of life. The study was guided by the Adaptation to

Chronic Illness Model, which posits that psychosocial adaptation to chronic illness is

crucial to developing self-management skills and improving quality of life. A multiple-

case study with embedded units of analysis design was used to examine how the use of

My Health Companion© impacts chronic illness self-management and quality of life in

persons with end stage renal disease undergoing hemodialysis. Pattern matching and

explanation building were used to compare study findings with theoretical propositions.

Key words: End stage renal disease, hemodialysis, self-management, adaptation, quality

of life, chronic illness model

29

End stage renal disease (ESRD) is the final of five stages of chronic kidney

disease. Common symptoms include fatigue, itching, anemia, thirst, swelling, and

difficulty breathing. Renal replacement therapy with hemodialysis (HD) or peritoneal

dialysis (PD) and renal transplant are the treatment options (United States Renal Data

Systems, 2017). ESRD presents challenges to normal daily living as strict dietary and

fluid restrictions and numerous medications become part of the multifaceted medical

regimen. In 2015, there were 124,114 new cases of end stage renal disease. Although

incident rates plateaued between 2001 and 2012, an upswing has been experienced since

2013 (United States Renal Data Systems, 2017).

Of the incident cases in 2015, nearly 88% began renal replacement therapy (RRT)

hemodialysis (United States Renal Data Systems, 2017). Patients with ESRD receiving

HD have substantially higher mortality than Medicare populations with cancer, diabetes,

or cardiovascular disease (United States Renal Data Systems, 2017). Quality of life may

be diminished in these patients due to complex medical regimens, fatigue, functional

impairment, and a decrease in the ability to maintain interpersonal relationships at their

pre-diagnosis level. In addition to the physical and emotional toll, ESRD has a weighty

financial impact. Hospital admissions and readmissions represent a significant financial

burden. End stage renal disease patients are admitted to the hospital an average of almost

twice per year and 35% are re-hospitalized within 30 days (United States Renal Data

Systems, 2017).

According to the United States Renal Data Systems (2017), the leading causes of

end stage renal disease (ESRD) include diabetes, hypertension, glomerulonephritis, and

30

cystic kidney disease. Incidence rates remain greater than Healthy People 2020 goals

with significant disparity by race. Adjusted incidence rates reveal that Black/African

American incidence rates are three times greater than Whites. Incidence rates among

Hispanics are nearly 34% higher than in non-Hispanic populations. Adjusted incidence

rates in ESRD Network 14, which includes Texas, are 79% higher than Network 16,

which reported the lowest incidence. This is due in large part to the significant Hispanic

population in Texas (United States Renal Data Systems, 2017).

The Women to Women Conceptual Model for Adaptation to Chronic Illness

(ACIM) theorizes that psychosocial adaptation to chronic illness plays a vital role in

illness management (Weinert, Cudney, & Spring, 2008). For persons with ESRD,

adaptation to chronic illness can be especially challenging, even more so for those in

rural areas. Rural areas tend to have fewer clinics (Almachraki et al., 2016) resulting in

fewer choices of dialysis sites and longer drives. Interventions are needed that increase

self-management and improve quality of life. My Health Companion©, a low-tech

personal health record, has been shown to increase perceived self-efficacy for self-

management but has primarily been studied with women and without regard for particular

chronic illness. The purpose of this study was to determine if the use of My Health

Companion© (Weinert, Cudney, & Kinion, 2010) improves chronic illness self-

management and quality of life in persons with ESRD as predicted by the ACIM.

31

Review of Literature

A review of the literature was conducted to explore the interrelationship between

the empirical indicators of self-management, self-efficacy, quality of life, social support,

and the intervention, and additional correlations for each.

Self-management

Self-management has been defined as patient engagement in oversight of their

health care to promote optimum health, control symptoms, make use of medical

resources, and minimize imposition of the disease into their preferred way of life (Curtin

& Mapes, 2001). For patients with ESRD, self-management includes adherence to strict

dietary and fluid restrictions, complex medication regimens, and dialysis or

transplantation. Curtin and colleagues (2005) described self-management as having two

domains; (1) self-management of health care and (2) self-management of everyday life.

They further suggest that self-management of health care includes interdependent

dimensions of communication, partnership in care, adherence, self-care activities, and

self-care self-efficacy. The second domain includes preservation of “normality” in both

roles and functions of everyday life. With an increasing elderly population and an ever-

changing health care system, there is a need for a paradigm shift from a medical model to

one that is patient-centered with a focus on self-management (Dwarswaard, Baker, Staa,

& Boeije, 2016; Walker, Marshall, & Polaschek, 2013). Providing tools that assist in

integrating the illness into daily life may improve adaptation to ESRD and dialysis (van

Houtum, Rijken, & Groenewegen, 2015), helping to balance the demands of ESRD with

those of everyday life (Novak, Constantini, Schneider, & Beanlands, 2013).

32

Previous studies have found that persons with chronic kidney disease report

suboptimal levels of self-management (Li, Jiang, & Lin, 2014; Walker et al., 2013).

Knowledge (Griva et al., 2013; Jowsey, Pearce-Brown, Douglas, & Yen, 2014; Li et al.,

2014; McKillop & Joy, 2013; Sritarapipat, Pothiban, Panuthai, Lumlertgul, & Nanasilp,

2012), self-efficacy (Bratzke et al., 2015; Li et al., 2014; Sritarapipat et al., 2012; Wells

& Anderson, 2011), and social support (Griva et al., 2013; Li et al., 2014; Sritarapipat et

al., 2012) have been positively correlated with self-management. Other factors associated

with self-management include socioeconomic status (Schulman-Green et al., 2012),

comorbidity (Bratzke, et al., 2015; Schulman-Green et al., 2012), complexity of treatment

regimen (Bratzke et al., 2015; McKillop & Joy, 2013), forgetfulness (Griva et al., 2013;

McKillop & Joy, 2013), and communication with health care providers (McKillop & Joy,

2013), including dialysis staff (Griva et al., 2013).

Self-efficacy

Self-efficacy, one’s confidence in their own ability to perform particular

behaviors, leads to better overall self-management, partnerships (Li et al., 2014; Wells &

Anderson, 2011) and increased dietary adherence (Washington, 2013). Kim and

colleagues (2013) found that treatment goal self-efficacy positively correlated with both

the physical component score (PCS, r = 0.19, p < 0.01), and mental component score (r =

0.16, p < 0.01) of the Kidney Disease Quality of Life Short Form 36 and treatment

management self-efficacy was significantly correlated with mental component score

(MCS, r = 0.22, p < 0.01). Interventions with a focus on increasing self-efficacy have

demonstrated positive results on intradialytic weight gain (M ± SD, 2.10 kg ± 0.67) when

33

compared with the control group (M ± SD, 2.80 kg ± 0.56, p = 0.02) (Aliasgharpour,

Shomali, Moghaddam, & Faghihzadeh, 2012). Self-efficacy education should be

integrated into interventions aimed at increasing self-management of ESRD

(Aliasgharpour et al., 2012; Li et al., 2014; Wells & Anderson, 2011).

Quality of Life

In studies comparing hemodialysis patients and peritoneal dialysis patients,

peritoneal dialysis patients reported higher quality of life than patients on hemodialysis

(Wakeel, Harbi, Bayoumi, Al-Suwaida, & Ghonaim, 2012). In that study, age, gender,

dialysis duration, and type of dialysis were all independent predictors of quality of life.

Age and dialysis duration were negative predictors with age and type of dialysis being the

strongest predictors. Patients undergoing hemodialysis had significantly lower quality of

life in all domains except physical functioning. Kim et al. (2013) found treatment goal

self-efficacy showed significant positive associations with HRQOL subscales mental

component summary (r = 0.19, p < 0.001), symptom/problem list (r = 0.23, p < 0.001),

effect of disease (r = 0.19, p < 0.01), and burden of disease. Additionally, Jankowska-

Polańska et al. (2016) found good financial standing (β = 0.203) a QOL stimulant while

fatigue was noted to be a destimulant.

Social Support

Social support has been linked to psychosocial adaptation to ESRD, accounting

for 6.8% of variance in quality of life and 10.9% of depression (Chan et al., 2011).

Weisbord (2016) reports impaired social support as a factor affecting QOL in chronic

dialysis patients. Perceived social support has also demonstrated a mediating effect on the

34

relationship of depressive symptoms to quality of life (β = -0.26, R square change = 0.07,

p < 0.001) with perceived social support independently predicting quality of life (β =

0.26, p < 0.001; Khalil & Abed, 2014). In a mixed-methods study on social provision in

older people with chronic illness, Kvaal, Halding, and Kvigne (2014) found a significant

correlation between social provision and feeling lonely/not feeling lonely (rho = -0.232, p

= 0.02).

My Health Companion©

The My Health Companion© was developed for the Women to Women Project by

Weinert et al. (2010) at Montana State University, College of Nursing, Bozeman,

Montana. The paper-based personal health record includes basic information, health

history, current health information, personal support system, and insurance information.

It provides a structure for tracking and maintaining updated health information,

increasing health literacy and improving quality of client/provider interactions (Weinert

et al., 2010). It is intended to provide a summary of the impact of chronic illness on

lifestyle in those diagnosed with chronic illness, such as ESRD for patients in rural areas

where a more advanced technological personal health record is unavailable, My Health

Companion© can increase understanding and use of health information, and maximize

communication between individuals and health care providers.

Studies using MHC© (Weinert & Cudney, 2012) have demonstrated an increase in

perceived self-efficacy in interacting with health care providers and helpfulness in health

maintenance activities. Overall use and helpfulness ratings were mixed in previous

studies and the literature provides no studies in which MHC© was used specifically in

35

persons with ESRD. Persons undergoing renal replacement therapy have frequent

interactions with a variety of health care providers, take medications for ESRD and

associated comorbidities, and have extensive self-management responsibilities,

supporting the need for an intervention to assist them in managing complex treatment

regimens.

Theoretical Model

The Women to Women Conceptual Model for Adaptation to Chronic Illness was

developed during the Women to Women (WTW) project, a three-phase study on women

with chronic disease living in rural areas of the western United States (Weinert et al.,

2008). The model has three major constructs: (1) environmental stimuli, (2) psychosocial

response, and (3) illness management. The fundamental idea is “that the process of

psychosocial adaptation to chronic illness is key to developing self-management skills

and achieving acceptable quality of life” (Weinert et al., 2008, p. 366). Whether positive

or negative, the psychosocial response influences one’s ability to manage the chronic

illness. The construct of environmental stimuli includes the middle range concepts of

focal, contextual, and residual stimuli. Focal stimuli are those immediately facing the

individual. Contextual stimuli are contributing influences and residual stimuli are

unknown factors that may have influence. Psychosocial adaptation is associated with

psychosocial response. Chronic illness self-management and quality of life are outcomes

of Illness Management. Each middle range theoretical concept has a number of empirical

indicators (Weinert et al., 2008). The focal (F), contextual (C), and residual (R) empirical

indicators are chronic illness (F), rurality (C), demographics (C), hardiness (C), optimism

36

(R), and spirituality (R). Empirical indicators of psychosocial adaptation include social

support, self-esteem, acceptance, stress, depression, and loneliness. Chronic illness self-

management is measured through self-efficacy, forming partnerships, and resource

utilization. Lastly, quality of life is measured by quality of life and happiness (Weinert et

al., 2008).

The diagnosis of ESRD is the focal stimuli in this study. Demographics are

contextual stimuli. The fatigue of dialysis, the strict dietary and fluid restrictions, and the

intricate medical management of ESRD can increase the need for social support, a

psychosocial adaptation to the focal and contextual stimuli. Self-efficacy for self-

management is the empirical indicator of chronic illness self-management. The quality of

life indicator for the study is quality of life.

Research Questions and Propositional Statements

The study aimed to answer the following research questions:

1. How does the use of My Health Companion© improve chronic illness self-

management in persons with ESRD undergoing hemodialysis?

2. How does the use of My Health Companion© improve quality of life in persons

with ESRD undergoing hemodialysis?

3. What are the perceptions of persons with ESRD regarding the effectiveness of My

Health Companion©?

The propositional statements for the study, derived from the Women to Women

Adaptation to Chronic Illness Model were:

37

1. In patients living with ESRD undergoing hemodialysis, social support can

impact self-management.

2. In patients living with ESRD undergoing hemodialysis, social support can

impact quality of life.

Design

A multiple-case study with embedded units of analysis was used. This

methodology is designed to analyze a small number of cases predicted to produce similar

findings (Yin, 2014). This assisted in determining that the ACIM and planned

intervention should be considered for broader application and study in the ESRD

population. This methodology is advantageous for describing “an intervention and the

real-world context in which it occurred” (Yin, 2014, p. 19) and is considered more robust

than single-case designs (Yin, 2014).

Methods

Sample

Following approval from Institutional Review Board (IRB), participants were

recruited using a recruitment flyer posted at local businesses, churches, and on social

media. Word of mouth was also used to recruit through peers and colleagues, friends and

family. Each case is an individual adult with ESRD, living in Texas, and undergoing

hemodialysis for renal replacement therapy at the time of the intervention. Participant 1

was recruited by recruitment flyer posted on social media through a dialysis support

group. Response was via Facebook Messenger. Participant 2 was recruited by word of

38

mouth from a colleague. Participant 3 was recruited by word of mouth from a former

student who worked in dialysis.

Instruments

Embedded units of analysis for each case included: (1) FACIT-F Version 4, (2)

PRQ2000, (3) Self-Efficacy for Managing Chronic Disease 6-Item Scale (SEMCD), (4)

Demographic Information, (5) My Health Companion© notebook, (6) interview with

participant, and (7) interview with caregivers when available. Demographic information

was assessed at baseline only and included age, race, gender, marital status, employment

status, educational level, and length of time on dialysis.

Self-efficacy.

Self-efficacy, defined as an individual’s belief in their ability to self-manage

ESRD (Steffen, McKibbin, Zeiss, Gallagher-Thompson, & Bandura, 2002), was

measured by participants’ responses to the Self-Efficacy for Managing Chronic Disease

6-Item Scale (SEMCD; Ritter & Lorig, 2014). The first four items measure self-

confidence in ability to prevent fatigue, physical discomfort, emotional distress, and other

symptoms from interfering with the things one wants to do. Item 5 measures confidence

in ability to do tasks and activities needed to manage condition to reduce need to see the

doctor. The final item measures confidence in ability to do things other than take

medication to reduce how much illness affects everyday life. Each item is rated from 1

(not at all confident) to 10 (totally confident; Ritter & Lorig, 2014). The score for the

scale is the mean of the six items with a higher number indicating greater self-efficacy.

Internal consistency has been demonstrated (α = 0.88-0.95; Ritter & Lorig, 2014). When

39

compared with other versions of a self-efficacy scale, correlation supported convergent

validity. Comparison of baseline and changes in SEMCD also suggest construct validity

(Ritter & Lorig, 2014).

Quality of Life.

Quality of life was measured by the Functional Assessment of Chronic Illness

Therapy-Fatigue (FACIT-F) Version 4 (Cella et al., 1993) Although the Kidney Disease

Quality of Life (KDQOL) is often used to measure quality of life in patients on

hemodialysis (Hayes et al., 1995; Kim et al., 2013; Korevaar, Jansen, Dekker,

Boeschoten, & Krediet, 2002), the FACIT-F was chosen for this study because the

KDQOL is administered annually to the hemodialysis population. Utilization of a tool not

routinely administered will provide additional perspective on quality of life in dialysis

patients and minimize the testing threat. The FACIT-F consists of the FACT-General

(FACT-G) plus the FACIT-Fatigue. The 40-item instrument contains five subscales:

physical well-being (7 items), social/family well-being (7 items), emotional well-being (6

items), functional well-being (7 items), and additional concerns (13 items). A 5-point

Likert-type scale is used with items rated 0 to 4 (0 = Not at all; 1 = A little bit; 2 =

Somewhat; 3= Quite a bit; and 4 = Very much), based on the past 7 days. Subscale scores

for Physical Well-being (PWB), Social/Family Well-being (SWB), and Functional Well-

being (FWB) range from 0 – 28 with higher scores indicating better quality of life in the

respective subscales. Emotional Well-being (EWB) subscale scores range from 0 – 24.

Subscale scores for additional items relating to fatigue range from 0 – 52. Total quality of

life score is obtained by adding all subscale scores. Total quality of life scores range from

40

0 - 160 with higher scores indicating better quality of life. Reliability and validity have

been established in multiple studies (Al-Shair et al., 2012; Cella et al., 1993; Webster,

Odom, Peterman, Lent, & Cella, 1999).

Construct validity of the subscales for PWB, SWB, EWB, and FWB was

established initially by Cella et al. (1993) through comparison of scores on the FACT-G

with The Functional Living Index-Cancer (FLIC) supporting convergent validity with the

Pearson correlation = 0.79. Comparison with the Marlowe-Crowne Social Desirability

Scale supported divergent validity (r = 0.22). Known groups method for establishing

construct validity demonstrated the ability of the instrument to differentiate patients

according to stage of disease, the Eastern Cooperative Oncology Group (ECOG)

performance status rating (PSR), and location of administration (Cella et al., 1993).

Construct validity on FACIT Fatigue scale has been established (Cella, 2007).

Social Support.

Social support, defined as “the perception that one is part of a network in which

one can mutually accept or receive aid from other” (Cohen, 2013, p. 262), was measured

by the PRQ2000, a 15-item exam measuring perceived level of social support. Items are

rated from 1 (strongly disagree) to 7 (strongly agree). Total score is achieved by

summing all items and scores range from 15-105 with higher scores indicating more

support. Reliability, ranging from 0.872 – 0.916, has been established in multiple studies.

Construct validity was established through comparison with the Center for Epidemiologic

Studies Depression Scale and the Profile of Mood States (Weinert, 2003).

41

Semi-structured Interview.

Individual semi-structured interviews with the participants were conducted to

further inform the experience of self-management. Interviews with primary caregivers

were intended when available. Participant 2’s caregiver was the only caregiver available

for interview. At their request, the interview was joint. Interviews were audio recorded

and transcribed verbatim by the researcher.

Intervention.

Participants were given My Health Companion© in a folder with labeled dividers

between each section. Each section of the tool was explained to the participant, questions

answered, and assistance with set-up as needed. Each binder included the following

sections:

1. Basic Information

2. Health History

3. Current Health Information

4. Medication & Preventive Care

5. Laboratory Test Results

6. Personal Support System

7. Questions for My Health Care Provider

8. Insurance Information

9. References and Additional Resources

10. Extra Pages

42

An additional page, not part of the original My Health Companion©, was included in the

Laboratory Test Results section. This page was used for documenting pre- and post-

dialysis weights. Participants were asked to use My Health Companion© for 12 weeks.

Participants were provided with a phone number and email address for the researcher and

encouraged to make contact for any questions regarding MHC© or the study.

Data Collection

An initial meeting was scheduled with each participant to discuss the study. The

meeting with Participant 1 was online through facetime, at her request. After the meeting,

the informed consent document, the MHC© book, and initial surveys were shipped to the

participant via United Parcel Service (UPS) with a return label and package included. All

survey documents were returned via UPS in the package provided. Meetings with

Participants 2 and 3 were in their respective homes. After informed consent was reviewed

and signed, a demographic survey was completed that included questions such as age,

sex, ethnicity, educational level, and length of time on dialysis. A second meeting was

scheduled with Participants 2 and 3 after six weeks. Surveys were completed in their

respective homes. Surveys were again shipped via UPS to Participant 1 and returned with

pre-paid label and package provided. At the end of the 12 weeks, a final measurement of

variables was obtained along with a semi-structured interview. The meeting with

Participant 1 was in a private room at a food establishment near her home, at her request.

Her husband works night and was unavailable for interview. Meetings with Participants 2

and 3 were held in their respective homes. The wife of Participant 2 was present during

43

the interview, but they did not want to be interviewed separately. The wife of Participant

3 was working and unavailable for interview.

Analysis

Consistent with the approach developed by Yin (2014), survey data and

interviews were collected, and each data source analyzed independently. Survey data

were entered into an IBM SPSS 24.0 file for analysis and examined. Individual scores for

self-efficacy, social support, and quality of life results were graphed to determine changes

over the 12-week time frame. Following graphing of individual results, the three

participants’ graphs were evaluated collectively to determine whether any changes in

scores demonstrated a similar pattern across participants.

Pattern matching compares patterns identified in the case study with predicted

patterns made before data collection (Yin, 2014). Almutairi, Gardner, and McCarthy

identify three phases of pattern matching: “(i) stating the study’s proposition; (ii) testing

the empirically found pattern from each distinct method against the predicted one; and

(iii) providing theoretical explanations and developing research outcome” (2014, p. 241).

This technique was used to examine the appropriateness of the propositional statements

of the study in terms of participant perception of the nonequivalent dependent variables,

social support, self-management, and quality of life, during the intervention.

The interview data were analyzed by inductive and deductive methods. Each

method provided distinctive understandings of the impact of social support on self-

management and quality of life. Finally, the interviews were assessed to determine the

acceptability of the MHC© as a tool to assist with self-management of ESRD. The use of

44

data triangulation using survey data, participant and caregiver interviews, and

observation, enhances the construct validity.

Findings

Participant 1 was a 32-year-old, Caucasian, married female who completed high

school. At the initiation of the study, she had been on hemodialysis four months.

Comorbidities for Participant 1 include diabetes mellitus and hypertension. Estimated

monthly household income was $0 - $2,000. Participant 1 exhibited a 20% increase in

quality of life at Time 2. A further increase of 28% was demonstrated between Time 2

and Time 3 for an overall increase of 54%. There was an increase in self-efficacy for self-

management at Time 2 and Time 3 with an overall increase of 50%. Social support scores

decreased 14% from Time 1 to Time 2 and rebounded almost back to baseline at Time 3.

Notably, the social well-being subscale score decreased 4% and was the only FACIT F

subscale to decrease. This resulted in a 1% decrease from Time 1 to Time 3. The

empirical pattern was: Living with ESRD with low socioeconomic status results in

fluctuating social support. Adequate social support positively influences self-

management and quality of life. Social support did not correlate with self-management or

quality of life. Self-management and quality of life scores increased during the

intervention period, 50% and 54% respectively.

Participant 2 was an 85-year-old, Caucasian, married male who completed some

college. At the initiation of the study, he had been on hemodialysis five months.

Participant 2 comorbidity was limited to hypertension. Estimated monthly household

income was $4,000 and above. A decrease in quality of life was exhibited at Time 2

45

(3.6%) and Time 3 (17%) with an overall decrease of 20%. The physical well-being

subscale remained unchanged at both Time 2 and Time 3. All other quality of life

subscales decreased from Time 1 to Time 3. A 14% decrease in self-efficacy at Time 2

was demonstrated with no further change at Time 3. Social support decreased 7.6% from

Time 1 to Time 2, with no further decrease at Time 3. There was a correlation between

social support and self-management. The empirical pattern was: Facing ESRD later in

life can lead to decreased quality of life and suboptimal self-management, even with ideal

levels of social support.

Participant 3 was a 59-year-old, Caucasian, married male who completed high

school. At the initiation of the study, he had been on dialysis 54 months. Comorbidities

included diabetes mellitus, hypertension, and arthritis. Estimated monthly household

income was $2,001-$4,000. Participant 3 exhibited a 24% increase in quality of life at

Time 2 but decreased (12%) from Time 2 to Time 3, resulting in an overall increase of

9%. The subscale for social well-being decreased 7.6% from Time 2 to Time 3 and was

the only subscale that demonstrated overall decrease. All other subscales increased from

Time 1 to Time 2, decreased between Time 2 and Time 3, but showed overall increase.

There was no demonstrated change in self-efficacy at Time 2 and a modest decrease at

Time 3 (11%). Social support increased 3% from Time 1 to Time 2 but decreased to

below baseline at Time 3 for an overall decrease of 10%. The empirical pattern was:

Living with ESRD for an extended period results in fluctuating quality of life as social

support varies over time.

46

Figure 1. Social support scores over time.

Figure 2. Self-efficacy scores over time.

98

84

97

105

97 9798

101

88

BASELINE 6 WEEKS 12 WEEKS

Social Support Scores over Time

Particpiant 1 Participant 2 Participant 3

6

8

9

7

6 6

9 9

3

BASELINE 6 WEEKS 12 WEEKS

Self-efficacy Scores over Time

Participant 1 Participant 2 Participant 3

47

Figure 3. Quality of life scores over time.

Following pattern matching of quantitative data, results were compared with the

theoretical propositions. Explanation building, a type of pattern matching, is used to

describe causal links which may be “difficult to measure precisely” (Yin, 2014, p. 147),

such as the complex relationships between the psychosocial responses of patients

undergoing hemodialysis and quality of life and self-management. Explanation building

was used to provide critical insight into the theoretical links between social support, self-

management of end stage renal disease, and quality of life.

Interview data were initially coded and analyzed deductively according to the

empirical indicators of the concepts underpinning the study: social support, self-efficacy,

and quality of life. Focal and contextual concepts were included in the survey data. Data

that did not fit into these categories were inductively analyzed to further illuminate

(Almutairi et al., 2014) the perspective of living with end stage renal disease.

94

113

145

137132

109

100

124

109

TIME 1 TIME 2 TIME 3

Quality of Life Scores Over Time

Participant 1 Participant 2 Participant 3

48

Deductive Analysis

Social support. Participant 1 acknowledged the presence of a strong support

system, commenting frequently on the encouragement she receives from her husband and

children. And, although they do not live close, she has a brother and friends who are

willing to be tested for transplant compatibility. Her husband has family locally who she

views as supportive. She developed relationships with nurses who cared for her, trusting

them to help her make important decisions about dialysis access and mode of dialysis.

She also made friends at the dialysis center and through an on-line support on Facebook.

In the early weeks and months on dialysis, that was not enough to prevent her from

feeling alone. She commented, “So, he’s been really supportive through it all and my

family has as well, so it helps. I don’t feel as alone as I first did.” Her husband, while

quick to help with housework, take her to dialysis, and encourage her to rest, did not

always appreciate the importance of the dietary and fluid restrictions and would say

things like, “What do you mean you can’t eat this? Just here, just have some.”

Participant 2 also reported a solid support system. His wife is there to help with

daily tasks that have become difficult. Their daughter lives on the same street and is

quickly available for things the wife is unable to do, like helping him up from the floor

after a fall or driving them to appointments in larger cities where the traffic frightens the

wife. Participant 2 is appreciative of some of the support his wife provides like helping

keep up with his blood pressure and weight and helping him to and from dialysis. During

the intervention period, he experienced several falls and was hospitalized with

pneumonia. These experiences changed the way his support system worked and,

49

consequently, his perception of his support. He felt smothered rather than assisted. He

commented of his wife helping, “I can shave, get dressed….I don’t get to do that alone as

much as I once did.” Of his wife and children, he says, “Here is an adult and, all of a

sudden, if they’re not careful, they become overprotective.” He goes on to say, “I’ve got

a lot of instructors. And suddenly, regardless of what you say, they know better.” He

acknowledged the need to “keep everybody else kind of calm and happy at the same time

and that’s not always easy.”

Participant 3 recalls a time when he was less able to do for himself. He admits, to

mow his yard, he had to put a chair at each end of his yard and “I’d make a pass and sit

down. I’d make another pass and sit down, until that boy next door felt so sorry for me he

started mowing my yard for a 12-pack of beer.” Although his wife works, they share

household duties with him cooking and her cleaning up. She works janitorial jobs in the

evening and, now that he feels better, he can go and join her in that.

Self-efficacy. All participants acknowledged that, early on, dialysis was

overwhelming. They were unprepared for the complex medical regimens and fatigue that

accompany hemodialysis. Additionally, all participants continued to struggle with low

protein levels, each admitting to working on it daily and feeling as though it does not

increase in relation to the effort. Participants 1 and 3 also admitted to struggles with

medication adherence, particularly with phosphate binders.

Participant 1 demonstrated intentionality in overcoming “the learning curve” by

taking what she learned from the dietician and dialysis staff and making changes in eating

and drinking habits, managing medications, dealing with fatigue, and adjusting family

50

life. Although achieving adequate protein levels is a continual struggle, she worked to

develop more self-control and learned that some things must be kept out of the house.

She recognized quickly that feeling sick after dialysis treatments was eased when she

managed her weight gain and diet more effectively. Although there is some residual

fatigue on non-dialysis days, she plans important tasks for those days when she knows

she will feel better. Additional challenges in self-management came with balancing the

dietary and fluid restrictions of the renal diet with those of the diabetic diet. Meetings

with the dietician both at the hospital and at the dialysis center helped her learn to

reconcile the two.

Increased self-management success in several areas has come as a result of first

experiencing the consequences of lack of self-management. Compliance with phosphate

binders was difficult when she did not understand the purpose or the cost of not taking

them. After her elevated phosphate level led to physical symptoms, she began taking the

binders and watching her diet more closely for phosphorus. She has also experienced

unexpected benefits from increased dietary compliance. She reports that eliminating

foods with excess sodium has changed their taste, so she no longer feels she is “missing

out” on something. She recalls, “We went to a football game a couple of weeks ago and I

had a bite of his hot dog and I was like, I can’t do it.” Replying to her husband, “I can

taste all the sodium.” She reports a similar experience from Halloween regarding

chocolate candy.

Participant 2 is content to allow his wife to manage many aspects of his illness;

cooking based on the renal diet, taking his blood pressure, monitoring his weights, and

51

helping with his medications. He admits that diet is the biggest issue for him saying, “The

diet is a big thing because there are certain foods that you need…things you don’t

particularly care for, you may need some of those. The real problem comes with foods

that you enjoy.” He, like the other participants, has difficulty reaching the protein goal

and comments further, “That’s a struggle for me for some reason. I eat a lot of protein-

rich foods, but I don’t seem to be able to gain much.”

Participant 3, the more dialysis experienced of the participants, is compliant with

his medication regimen. He checks his blood sugars multiple times daily and self-

administers insulin. Since starting dialysis, he has intentionally lost a significant amount

of weight to improve his health status. Although he felt poorly early on, eventually he

reached the point where he is now able to get out and do more physically. Since resuming

janitorial work with his wife, he admits eating sometimes twice daily at a local fast-food

establishment. He brags that he has lost weight while doing it and feels he craves the

protein on the double-meat burger he eats. The fluid restriction is a problem for him. He

estimates that he drinks 1.5 large cups from the fast-food establishment each day even

though he is aware his restriction is 6 cups per day. He feels his low hemoglobin and dry

mouth from medications make it more difficult. The weekend is an especially difficult

time, with the extra day between treatments. He states, “So unfortunately, I go in on a

Monday and I am taking off 6 liters. And then by Wednesday I am down to 4. So it needs

improving. I just can’t seem to stick to the restriction.”

Quality of life. Each participant suggested that, in the early weeks of dialysis,

they were faced with vast unexpected changes in almost every aspect of life. Participant 1

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expressed that it felt “overwhelming and hectic.” This reflects the perceptions of the other

participants as well.

Participant 1 voiced frustration with being unable to attend her son’s out of town

football games and having to leave early, at times, from the home games due to fatigue

and inability to tolerate the heat on dialysis days. The fatigue was also a factor in her

ability to do housework. The loss of independence was difficult to accept. She reported

there were days when she just didn’t want to go. Her husband encouraged her, reminding

her that he and her boys need her. Her oldest son, who understands more than the

younger one, tries to encourage her. She recalls him saying, “I know you don’t like to go

sometimes but I just want you to do whatever you have to because you have to be here

for us.” That drives her to not give up.

Participant 2 experienced several significant changes over the course of the

twelve weeks. A corresponding change in his countenance was observed. While the

introduction of dialysis into his life presented challenges, he was not defeated by them at

the initial meeting. At the final meeting, during the interview, that was not the case. What

had previously been viewed as support was then seen as overbearing. He had spent his

life being in charge and was frustrated that his health issues had taken away not just

physical independence but also some of his decision-making authority. The falls and

subsequent pneumonia also resulted in his having to leave his job as pastor. His wife said

of the decision, “He’s pastored over 60 years and it was really the hardest thing for him to

do, was to give up the pastorate. But when he decided, he said, ‘you know, I don’t feel

like I’m doing the church right.’” The fatigue and lack of strength caused him to be

53

unable to do the things he once did and enjoyed, significantly impacting his quality of

life. He explained, “We’re a whole person and whatever affects one area of our lives

affects my life.”

Participant 3 had a period of depression when he first began dialysis. He admits,

“I shut down completely. I sat there and waited to die.” He went on to say, “I knew that

for sure, there was unmistakable, I was dying. Over 250 pounds. All day, every day, six

different blood pressure medicines at maximum doses and I wasn’t getting it down. And I

was getting these flash edemas and I knew eventually one of them was gonna get me.”

After changing from peritoneal dialysis to hemodialysis and getting extra fluid off, he had

a change in perspective. He goes on, “I expected to die and then here it is six years and

I’m still alive. And I’ve got to see three of my grandkids get born. I got to see some of

them starting school that were babies when I started. And I have been able to have a little

bit of influence in their lives that I didn’t think I was going to have.”

My Health Companion©. My Health Companion© was used to varying degrees

by the participants. When asked about the benefit of using MHC©, Participant 1 made

comments such as, “This has been awesome for me” and “I’m planning on taking this

tomorrow with me because it has all my doctor’s information, medications, you know,

and different labs.” Participant 2 openly acknowledged that he prefers his wife keep up

with information such as that kept in the MHC© book. When asked if it helped, he

responded, “I probably didn’t use it as much as helpful. With being sick and all lately, it

was hard to feel like doing.” Although the amount it was used is in question, he did not

return the book. Participant 3 used the book and indicated it helped him improve his

54

hemoglobin A1C and was beneficial for knowing his other lab values. Despite this, he did

not feel it was something he would continue, and the book was returned.

Inductive Analysis

The Women to Women Conceptual Model for Adaptation to Chronic Illness did

not fully represent the participants’ experiences. This approach yielded important themes

that more fully explained the participant’s experiences of living with end stage renal

disease with hemodialysis.

Hope. Hope is described as “an inner drive, a positive force” (Jonasson &

Gustafsson, 2017, p. 39). Each of the participants spontaneously revealed hope, although

they hoped for different things. Participant 1 exuded excitement as she explained that

getting her protein level up would allow her to switch from hemodialysis to peritoneal

dialysis and that she had an appointment for transplant evaluation the following day.

Regarding the protein she said, “I’m on Liquicil and protein powder and it just keeps

over-spilling and it won’t raise up and it is disappointment, but I just keep trying.” The

idea of a kidney and pancreatic transplant allows her to hope that she will not always be

facing the current challenges. Participant 1 also expressed hope that teaching her husband

and children about healthy eating will help prevent them from becoming diabetic or on

dialysis.

Participant 2 experienced hope, yet it was different than the other participant’s

hope. He recalls doctors offering other modes of dialysis and none seeming to fit with his

situation. Also, when a doctor discussed transplantation with him, he recalls saying, “Do

55

you mean at my age? I’m 85 years old.” He went on to explain, “I realized that, at my

age, they aren’t going to keep me together forever anyway.”

Participant 3 had been told previously that he was not a good candidate for

transplantation. During the 12-week intervention, he was told otherwise. The hope for a

transplant caused him to more closely evaluate his glucose control and weight. He also

had investigated average wait times for transplantation in surrounding regions so that he

could be evaluated where a transplant was most likely.

Control. Control was a theme that pervaded the interviews with each participant.

Although the situation for each participant was unique, when questioned about the impact

of dialysis on their lives, the responses echoed one another. Participant 1 said when she

first began, there was only one open chair at the clinic and it was at 4:45am. She further

talks about adjustments to family routine, holiday celebrations, and married life. She said,

“We have had to adjust things and work through stuff and he has been a great support

system.” She added later, “He has been there every time I have a breakdown…he says

you know, clam down, hang in there.” Participant 2 said of dialysis, “It’s like a complete

change in your life because you lose control.” He delineates areas in which he has lost

control; dressing and shaving alone, driving alone, and being the decision-maker.

Participant 3 also commented on control. When asked how being on dialysis affected his

life, he responded, “Oh, it’s affected it a lot, especially when I first started.” Like

Participant 2, dialysis resulted in the loss of employment and role as primary provider.”

While he prefers clinic dialysis to home hemodialysis, he commented, “The other issue

that a lot of us have, that I don’t think the clinic really takes into consideration, we’re all

56

anemic.” He explains how cold the clinic is kept and that patients are scheduled to come

in groups larger than staff can handle at once, resulting in extended wait times.

Deductive analysis of the empirical measures of the concepts within the model

revealed that each participant recognized the social support available and utilizes it when

needed. Those who are part of that system often provide support in necessary areas but

may inadvertently exert a negative influence through attempts at emotional

encouragement. The data support the supposition that, psychosocial adaptation, in the

form of social support, is a psychosocial response to diagnosis of end stage renal disease

and renal replacement with hemodialysis. The level and type of social support reflect the

degree and direction of influence on self-efficacy for self-management and quality of life.

Two themes emerged that were not explained by the model, hope and control.

Discussion and Conclusion

The Women to Women Conceptual Model for Adaptation to Chronic Illness

proposes that a person, when faced with an environmental stimulus will exhibit a

psychosocial response, which can, in turn, influence illness management. Although tested

previously in unspecified chronic illness, this is the first time that this framework has

been tested exclusively in the end stage renal disease population. While the results of this

study were mixed, they support the model, suggesting that end stage renal disease and

demographic factors elicit development of social support systems that impact self-

efficacy and quality of life.

Study results indicated that social support impacted self-efficacy, in line

with propositional statement 1. Although this was not the case for Participant 1, the use

57

of MHC© may explain the consistent rise in self-efficacy during times of fluctuating

social support. This supports the supposition that MHC© increases self-management since

Participant 1 used MHC© extensively. Although scores decreased for the other

participants, Participant 3 used MHC© less extensively and Participant 2’s use is

questionable. The varied use of MHC© suggests it may be more beneficial for certain sub-

populations of persons undergoing hemodialysis than others. Quality of life scores

increased overall in both participants known to have used MHC©. This is consistent with

prior findings suggesting that self-management programs can improve QOL for patients

with chronic kidney disease (Lin, Liu, Hsu, & Tsai, 2017). Although QOL in Participant

1 increased considerably more than Participant 3, this may be explained by a decrease in

utilization by Participant 3 by the mid-point.

Study results failed to support the theory that social support impacts quality of

life. While participants demonstrated dissimilar patterns when comparing social support

and quality of life, the social well-being subscale of the FACIT-F decreased in all

participants over time. This suggests that social support may affect some aspects of

quality of life and not others. A common finding among the participants was that family

acceptance of the illness varies over time, affecting both social support and social well-

being. Despite declining social support, quality of life increased in both participants who

had hope of transplantation and may be explained by Weisbord (2016), who found that

“few interventions other than renal transplantation have been shown to meaningfully

enhance QOL in this population.”

58

Perceptions of the effectiveness of MHC© were significantly mixed. It was most

effectively utilized by Participant 1, the only one to indicate a desire to continue after the

study ended. Advantages included the low-technology aspect where the information is

easily at hand even when technology is unavailable. An unexpected finding was that

MHC© was utilized most extensively by the youngest participant who, not living rurally,

is not limited in access to high-speed internet and associated technologies. This could be

attributed to increased time available related to shorter commutes to and from the dialysis

center.

Qualitative data do not mirror quantitative data in several aspects in this study.

Although Participant 1 spoke often and positively about her support, the PRQ score

dropped at the mid-point without explanation in the qualitative data. Although Participant

1 described her husband as “very supportive” and claims a solid support system, she

reported a decrease in social support at the mid-point which is not reflected in the

qualitative data. Participant 2 exhibited dramatic declines in almost every outcome,

including subscales of the FACIT-F. His social support scores are misleading, matching

those of Participant 1. Qualitative data from his interview indicate this support became

oppressive and diminished his independence and self-care. This was corroborated by

qualitative data from his wife. Additionally, although his quality of life score at the end-

point was equal to that of Participant 3, there was a noticeable difference in the

countenance of the two men, indicating that possibly the decline in quality of life was

more significant that the score. Some of this may be a result of the significant increase in

health issues experienced by Participant 2 reflected a decrease in quality of life as health

59

status decreased and fatigue level increased, in contrast to prior research (Lee, Kim, &

Kim, 2015). Participant 2 experienced a loss of vocational capacity (Gerogianni, et al.,

2014; Weisbord, 2016) and functional decline which have been found to be factors

affecting QOL in chronic dialysis patients.

The distinctive needs of persons undergoing hemodialysis highlight the

importance of developing individualized tools for self-management that consider factors

of age, length of time on dialysis, and comorbidities. MHC© can be a viable option for

those interested in self-management and may be more beneficial for certain

subpopulations than others. Self-management may also be enhanced using patient-to-

patient intervention. Nurses are responsible for acting as patient advocates by

collaborating with the health care team and working to develop tailored, patient-centered

interventions.

60

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67

Chapter 4

Results and Discussion

This research study began with an interest in the experience and quality of life of

persons with end stage renal disease undergoing hemodialysis for renal replacement

therapy. While many older people with chronic illness experience social impairment

(Kvaal et al., 2013), persons on hemodialysis are especially vulnerable due to severe

fatigue and time spent on dialysis. Complex psychosocial factors contribute to the overall

psychological well-being of this population (Chan et al., 2011) and may affect quality of

life (Weisbord, 2016). To fully understand social support and its impact on quality of life,

a thorough investigation of three similar concepts was completed. The concepts of social

isolation, loneliness, and disengagement were compared with defining attributes,

antecedents, and consequences of each delineated. Preventive considerations and a

nursing action plan for each was presented, noting the integral role of the nurse in early

identification of these negative social responses.

My Health Companion©, a low-tech personal health record was developed

(Weinert, Cudney, & Kinion, 2010) to increase personal responsibility for health

management in persons with chronic illness. Used in previous studies in patients with

chronic illness (Weinert & Cudney, 2012), the tool had not been studied specifically in

persons on hemodialysis. A multiple case study with embedded units of analysis was

used to examine the effects of My Health Companion© on self-management and quality

of life. The theoretical basis for the study, Women to Women Conceptual Model for

Adaptation to Chronic Illness, was also tested. Results revealed that social support varies

68

over time for patients undergoing hemodialysis, a life-saving measure that affects not

only the patient, but caregivers as well. Additionally, social support, while necessary for

psychosocial adaptation to end stage renal disease, can become oppressive and exert a

negative effect on quality of life. My Health Companion© was used to varying degrees

but demonstrated ability to increase self-efficacy for self-management and quality of life

when used as intended. Additional benefit may be seen if presented as a tool for both

persons on dialysis and primary caregivers.

Mixed results in this study indicate a need for quantitative studies with larger

samples. Also, the varied use of My Health Companion© would suggest the need for a

self-management tool geared toward persons on dialysis that can be individualized in

ways that encourage self-responsibility for health management. One must consider that,

since the intervention and model were developed in the Women to Women study

(Weinert & Cudney, 2012; Weinert, Cudney, & Kinion, 2010), gender and rurality may

have impacted current findings.

Further studies to refine the Women to Women Conceptual Model for Adaptation

to Chronic Illness should be considered with additional empirical indicators measured. It

is also recommended that a quality of life tool that is more specific to dialysis be utilized.

While the KDQOL-SF36 (Korevaar, Jansen, Dekker, Boeschoten, & Krediet, 2002) has

been utilized often, it is important to consider participant fatigue particularly when

multiple outcomes are being measured.

In future studies, it is suggested that recruitment include social media from the

outset. It is also recommended that a self-management tool be utilized that offers more

69

variability. The use of journaling should be evaluated in conjunction with the self-

management tool to support quantitative findings with less dependence on participant

recall.

In conclusion, the validity of the research study cannot be overestimated, as the

number of persons on dialysis is likely to grow in proportion to the aging population of

baby boomers. Nurses are appropriately positioned to identify and intervene in negative

psychosocial adaptation. Their frequent contact with persons on hemodialysis also

situates them advantageously for developing patient-centered interventions that increase

illness self-management.

70

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73

Weisbord, S. (2016). Patient-centered dialysis care: Depression, pain, and quality of life.

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Oaks, CA: SAGE Publications.

74

Appendix A. Adapted Conceptual Model of Adaptation to Chronic Illness

Model of Adaptation to Chronic Illness with Study Variables and Measures (Weinert et

al., 2008)

Psychosocial

Response Model

Constructs

MRT

Concepts

Empirical

Indicators

Environmental

Stimuli

Focal (F),

contextual

(C) &

residual (R)

stimuli

Chronic

illness self-

management

Quality

of Life

Psychosocial

Adaptation

Illness

Manage

ment

**Quality of

life

**Self-

efficacy **Social

Support

**End Stage

Renal Disease

(F)

Demographics (C)

FACIT-F

Self-

Efficacy for

Managing

Chronic

Disease

PRQ2000

Length of time

on

hemodialysis,

Standard

demographics

TOOLS

75

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Appendix C. Permission to Publish

81

Appendix D. Recruitment Flyer

Research Participants Needed

Learn how to better care for yourself using a My Health

Companion© notebook.

• Keep up with pre and post dialysis weights, lab work, and

medications

• Use the notebook to help talk with your doctor and dialysis staff

about your end stage renal disease

• Monthly meeting with researcher takes place at your dialysis

center or at your home

• Notebook is provided and is yours to keep

Participation is voluntary and you may stop at any time!

Requirements

√ 18 years of age or older

√ Read, write, and speak

English

√ Diagnosis of End Stage

Renal Disease

√ Receive hemodialysis

treatments

For more information or to

enroll:

Julie Leming, PhD(c), RN

(903)503-2012

[email protected]

The University of Texas at

Tyler College of Nursing

82

Appendix E. Initial IRB Approval

THE UNIVERSITY OF TEXAS AT TYLER INSTITUTIONAL REVIEW BOARD

EXPEDITED and EXEMPT RESEARCH APPLICATION

IRB: Sp2017-42 Approved by: G Duke

Date: January 30, 2017

Attach (electronically) to [email protected] with this application, the following:

DATE: 01-10-2017

Principal Investigator

Leming Julie D (Last) (First) (MI)

PI Title and Credentials

☐Assistant Professor ☐Associate Professor

☐Professor ☒ Student

☐Other

Faculty Sponsor Name and Email if PI is Student

Barbara Haas [email protected]

PI Phone PI Email

903-503-2012 [email protected]

Co-Investigator(s) N/A

Co-Investigator(s) Email and Telephone

Click here to enter text. Click here to enter text.

Secondary Contact Person in Absence of PI

Click here to enter text.

Secondary Contact Person’s Telephone and Email

Phone: Click here to enter text. Email: Click here to enter text.


83

• Written consent form using the UT Tyler Consent Template unless a waiver of written informed consent is requested

• Signature page of Thesis or Dissertation Committee members showing proposal approval for graduate students

• Brief research proposal that outlines background and significance, research design, research questions/hypotheses, data collection instruments and related information, data collection procedures, data analysis procedures. Most of this can be copied and pasted to relevant parts of the application but please keep Background & Significance brief for the application.

• Human Subject Education Certification for PI, co-investigators, and research assistants participating in recruitment, data collection, data analysis, or, if they have any exposure to identifiable data (if training has not been completed at UT Tyler within a 3 year period of time)

• Tool/instrument/survey; if copyright or other issues prohibit electronic form, submit one hard copy

COMPLETE ALL ITEMS TO AVOID DELAY IN IRB APPROVAL

1. Designate the category that qualifies this proposal for what you believe

will be either exempt or expedited review (see UT Tyler Exempt (page 8) and Expedited Categories (page 9) at the end of this application) and justify this designation by responding to the statements below each category

Category # 7 Information Required for Justification (See specific information under each category)

2. For proposals involving Personal Health Information (PHI) data: If this is a

retrospective chart review (Category 5) (health records research), or, data involves review of PHI, refer to the IRB's HIPAA policies and procedures in

Appendix E (Continued)

Title of Proposed Research

The Effect of My Health Companion© on Self -Management and Quality of Life in Persons with End-Stage Renal Disease

Source of Funding

☐NIH ☐Local ☐ Industry ☐ Other Federal (Specify)

☒Other (Specify) PI

84

Appendix E (Continued).

the IRB Handbook and complete any appropriate forms. All can be located on the UT Tyler IRB site: http://www.uttyler.edu/research/compliance/irb/

2a. Does this protocol include the use of PHI? ☐ Yes ☒ No

NOTE: If the protocol includes the use of PHI, refer to the IRB Handbook on

HIPAA policies and relevant forms that must be completed before IRB approval can be obtained.

3. Purpose Of Study: The purpose of the proposed research study is to determine if the use of My Health Companion© (Weinert, Cudney, & Kinion, 2010) improves chronic illness self-management and quality of life in persons with ESRD and to test the Adaptation to Chronic Illness Model. 4. Research Questions: The following hypotheses will be tested: (1) The use of My Health Companion© (IV) improves chronic illness self -management (DV) in persons with ESRD undergoing hemodialysis. (2) The use of My Health Companion© (IV) improves quality of life (DV) in persons with ESRD undergoing hemodialysis. (3) Social support (IV) is a predictor of self-management (DV) in persons with ESRD undergoing hemodialysis. (4) Social support (IV) is a predictor of quality of life (DV) in persons with ESRD undergoing hemodialysis. 5. Brief Background and Significance of Study (include enough to

indicate literature gaps and why it is important to do this study): In 2014, there were 120,688 new cases of end stage renal disease

(United States Renal Data Systems, 2016). The crude incidence rate was 370 per million/year, a rise from the previous year (United States Renal Data Systems, 2016). Of those 120,688 new cases in 2014, 88.1% began renal replacement therapy (RRT) hemodialysis (United States Renal Data Systems, 2016). Quality of life may be diminished in these patients due to complex medical regimens, fatigue, functional impairment, and a decrease in ability to maintain interpersonal relationships at their pre-diagnosis level.

http://www.uttyler.edu/research/compliance/irb/

85


6. Target Population:

a. Ages: 18 and older b. Gender: male and female

Explain below if either gender is to be purposely excluded.

N/A

c. Are all racial and ethnic groups included in general

recruitment? ☒ Yes ☐ No

Explain below if a racial or ethnic group is to be purposely

excluded.

Click here to enter text.

d. Number of Anticipated Participants with Justification: The desired a-priori sample size for dependent t -tests and multiple regression was estimated using G* Power 3.1 (Faul, Erdfelder, Lang, & Buchner 2007). Assuming a medium effect (d = 0.5), power of 0.80, and alpha 0.05 a sample of 55 is needed. The researcher will recruit 62 in order to allow for a 12.5% attrition rate (Polit & Beck, 2012).

e. Inclusion Criteria for Sample Eligibility: Inclusion criteria include individuals who are at least 18 years of age, currently undergoing hemodialysis for ESRD, able to speak, read and write English and have no diagnosis of cognitive dysfunction.

Note: Any study involving prisoners requires a full board review, and may not

be approved under expedited review. 7. Explain the locations or settings for sample recruitment and data collection:

a. In what settings (e.g., specific classroom, organizational meetings, church, clinics, etc.) will you do sample recruitment?

Recruitment will take place in the patient waiting area

in Davita Dialysis centers in East Texas communities.

86


b. In what settings will you collect your data?

Data will be collected at the dialysis center, participant’s home, or other private location selected by participant. 8. Prior to sample recruitment and data collection, who will you first

obtain permission to do the recruitment and data collections. For example, if sample recruitment and/or data collection will occur in settings other than public settings, you may need permission to do this. For example, in business organizations, you will need approval from a manager or owner of the business; in academic settings, you may need permission of course faculty to recruit their students; in school districts, you may need permission from a superintendent, principle and/or teachers.

DaVita Clinical Research Committee

9. Who will be recruiting the sample (humans, records, etc.)? This could

be the PI or another person who is asked by the PI to recruit.

PI: Julie Leming

10. How will recruitment be done? For example, will recruitment be done by email (if so, indicate how email addresses are obtained), face to face, etc.?

Recruitment flyers will be placed in the patient waiting area in

Davita Dialysis centers in East Texas communities. Flyers will include name of and contact information for the PI. The PI will visit each dialysis facility to recruit participants. Visits will be scheduled to encourage recruitment from both the Monday/Wednesday/Friday patients and the Tuesday/Thursday/Saturday patients.

a. Copy and paste text, verbal scripts, graphics, pictures, etc. below from any flyers, ads, letters etc. that are used for recruitment of participants. This will be what will be said in emails, etc. to potential participants as the general announcement for recruitment.

87


NOTE: This is never an “N/A” option. You may also add these as separate attachments and indicate so in space below.

Recruitment flyer and verbal script attached.

11. Informed Consent

. Prospective research ordinarily requires written informed consent. Inclusion of children (under 18 years) requires permission of at least one parent AND the assent of the child (refer to UT Tyler's Policy on Informed Consent of Children).

If written consent is to be used, terminology must be about the 8th grade

level, or as appropriate for the accurate understanding of the participant or guardian.

If there are questions about the literacy or cognitive level of potential

participants, there must be evidence that the participant is able to verbalize basic information about the research, their role, time commitment, risks, and the voluntary nature of participating and/or ceasing participation with no adverse consequences.

Please use the templates posted under the IRB forms as a guide, and

attach as a separate document with the application submission. Do not copy and paste from this document into consent form. Use

simple and easy to understand terminology written at no higher than 8th grade level.

12. If you are requiring signed consents, skip #12 and #13 and move to

Item #14. This section ONLY for those requesting a waiver or alteration of

SIGNED and written informed consent:

All four criteria must be met in order to NOT have signed written informed consents as a requirement for your study.

Appendix D. Continued

88


In other words, you must answer “yes” to all four of the criteria below in

order to NOT have written and signed informed consents. If you are requesting a waiver of written and signed informed

consent, Indicate “yes” if the statement is true about your proposed research:

1. The research involves no more than minimal risk to the subjects ☐

Yes ☐ No

2. The waiver or alteration will not adversely affect the rights and welfare of the subjects

☐ Yes ☐ No

3. The research could not practicably be carried out without the waiver or alteration,

☐ Yes ☐ No AND

4. Whenever appropriate, the subjects will be provided with additional

pertinent information after participation ☐ Yes ☐ No.

13. When prospective informed consent is waived, explain how you will

obtain permission to use participant’s data. If no permission is planned, please explain your rationale.

Any online survey should always present general purpose of the research, risks, benefits, and PI contact information, and then participant should have the options presented to “I agree” or “I do not agree” to participate in the research. If they select “I do not agree” the survey should be set up so that the participant exits out and has no access to the survey.

Written informed consent will be obtained before any data collection

begins.

89


14. Detailed Data Collection Procedures ATTENTION: Be very specific

for this item.

Specify who, what, when, where, how, duration type of information for your procedures. Write this section as if you were giving instructions to another person not familiar with your study. Please bullet information if possible.

Demographic data and baseline measurements of variables wil l be collected by the PI after informed consent is obtained. Data will be collected using pen and paper versions of each instrument. Participants will read and answer questionnaires with the PI only providing help when requested. Each instrument will be evaluated immediately after participant completion to assess for missing data. Data will be collected at the dialysis center, participant’s home, or other private location selected by participant. Data collected on dialysis days will be collected b efore treatment when possible. 15. Data Analysis Procedures: Statistical analysis using IBM Statistical Package for the Social Sciences 23 (SPSS) will be used for this study. Descriptive statistics will be used to provide information about sample and measures used in the study. Exploratory data analysis will be used to evaluate parametric assumptions. Analysis using dependent t-tests will be used to compare pre-test and post-test scores. A 95% confidence interval will be used. Multiple regression will be used to evaluate the relationship between social support a nd self-management and quality of life.

16. Risks and benefits of this research to the subjects and/or society Risks: Participants may experience emotional distress when considering disease self-management, their social support, or impact of disease on family life.

90


Benefits (benefits of your research to society in general): New tools are needed to help patients on dialysis be active participants in management of their health. My Health Companion© may better understand individual health and end stage renal disease and improve communicate better with health care providers.

17. Identifiability of data or specimens: Will the specimens or data be

identifiable?

(NOTE: Any time code numbers are used, or signed consent forms are used, there is ALWAYS potential identifiability of data).

☒ Yes ☐ No If yes, complete item 17a

17a. State the type of identification, direct or indirect, on any

specimens or data when they are made available to your study team: Indirect: numbers to match pre and post intervention data.

Direct Identifiers include subject name, address, social security, etc.

Indirect Identifiers include any number that could be used by the investigator or the source providing the data/specimens to identify a subject, e.g., pathology tracking number, medical record number, sequential or random code number)

18. Confidentiality and Protection of Data: Specify how confidentiality will

be secured and maintained for research data For example, locked in file cabinet in office; on password protected

computer, location(s) of computer; identifiers and signed consent forms are kept locked in separate entity from data, etc.).

91


Data will be taken immediately to the home office of the

researcher. All data will be secured in a locked file cabinet and the office door will remain locked any time the researcher is not present. Participants will be assigned numbers so that informat ion can be paired together without the use of names. Number and name pairings will be stored on a password protected computer in the office of the principal investigator.

19. Access to Data: Specify faculty and staff (members of the study team)

permitted to have access to the study data. Julie Leming, Barbara Haas, Zhaomin He 20. Have all individuals who have access to data been educated about

human subject ethics and confidentiality measures? (NOTE: This is responsibility of PI, and certificates must be attached to IRB application)

☒ Yes ☐ No

21. If data is on a laptop, acknowledge that the laptop will never be in an

insecure location where theft is possible (e.g., in a locked car) Pairing of names and numbers will be stored on laptop that will never be in an insecure location such as in a car or unlocked office. SIGNATURE OF PRINCIPAL INVESTIGATOR: Signature indicates agreement by the PI to abide by UT Tyler IRB policies and procedures in the UT Tyler Handbook and the Federal Wide Assurance, to the obligations as stated in the “Responsibilities of the Principal Investigator” and to use universal precautions with potential exposure to specimens.

Julie Leming 01-10-2017

Principal Investigator Signature Date Please print name or affix electronic signature. Electronic submission of this form by PI indicates signature

92

Appendix F. Amended IRB Approval

THE UNIVERSITY OF TEXAS AT TYLER

INSTITUTIONAL REVIEW BOARD

IRB MODIFICATION REQUEST IRB: Sp2017-42

Approved by: G Duke Date: April 25 2017

Date: April 4, 2017 Principal Investigator: Julie Leming Department: PhD Student IRB #: Sp2017-42 Project Title: The Effect of My Health Companion© on Self-Management and Quality

of Life in Persons with End-Stage Renal Disease Original Approval Date: January 30, 2017 Please complete all sections as appropriate and submit to the UT Tyler IRB Chair. IDENTIFICATION OF CHANGE(S) A. GENERAL

☐Change in Title of Protocol

☐Resubmission to Grant/Contract Agency

☐Change in Extramural Sponsor

☐Change in Cooperating Institution

☐Change in Status of Protocol (e.g., from "active" to "hold")

Explain any related changes: Click here to enter text. Explain rationale for changes: Click here to enter text.

93

Appendix F (Continued).

B. DESIGN

☒Change in Study Design

Explain any related changes: Click here to enter text. Explain rationale for changes: Click here to enter text. C. PERSONNEL

☐Change in investigators, faculty or staff:

Name: Click here to enter text. Credentials: Click here to enter text. Contact Information: Click here to enter text.

☐Change in Consultant/Collaborator

Explain any related changes: Click here to enter text. Explain rationale for changes: Click here to enter text. D. RISK

☐Change In Risk/Benefit Ratio (e.g., emergence of new side effects)

Explain any related changes: Click here to enter text. Explain rationale for changes: Click here to enter text. E. COST

☐Change in Subject Expense

☐Change in Subject Reimbursement


94


F. PROCEDURES INVOLVING SUBJECTS

☐Change in collection of blood or other body fluids

☐Change in subject evaluation (e.g., number of visits, etc.)

☐Change in administration or dosage of drug

☐Change in drug formulation

☐Change/Deletion of any test

☐Change/deletion of device

Explain any related changes: Click here to enter text. Explain rationale for changes: Click here to enter text. G. STUDY POPULATION

☐Change in sample size

☐Change in eligibility criteria

☐Change in exclusion criteria

☐Alteration of study groups

☐Other: Click here to enter text. Explain any related changes: Click here to enter text. Explain rationale for changes: Click here to enter text. H. SUBJECT RECRUITMENT

☒Change in recruitment procedures

☐Change in ads, flyers, etc.

95


Explain any related changes: Recruitment flyers will be placed in the patient waiting area in Davita Dialysis centers in East Texas communities. Flyers will include name of and contact information for the PI. The PI will visit each dialysis facility to recruit participants. Visits will be scheduled to encourage recruitment from both the Monday/Wednesday/Friday patients and the Tuesday/Thursday/Saturday patients. Recruitment will also include advertisement in local newspapers and social media using the same flyer. Permission will also be requested to post flyers in waiting rooms of local internal medicine practitioners, ophthalmologists, and family physicians. Permission will also be requested from Marshall Home Care and Hospice to allow home health nurses to leave flyers with patient s who meet criteria. Explain rationale for changes: Obtaining permissions from the regional directors and medical directors of Davita Dialysis Centers is taking an extended time and significantly delaying initiation of the study. I. OTHER

☐Any other significant changes

Explain any related changes: Click here to enter text. Explain rationale for changes: Click here to enter text. EXPLANATION OF CONSEQUENCES OF CHANGES J. Modifications identified above require changes in:

☐Informed consent form (describe by highlighting or tracking of originally

approved form) K. Will these changes result in a change of the risk/benefit ratio?

☐ Yes ☒ No

If Yes, please explain: Click here to enter text.

96


ELECTRONIC ENCLOSURES AS NEEDED FOR CHANGES INDICATED:

☐Revised Informed Consent Form(s)

☐Letter from Sponsor

☐Letter from Investigators indicating their removal or addition to study

☐Revised Protocol (Date of Revised Protocol: Click here to enter text. )

☐Revised IRB Full Board Review Application

☐Revised Investigator's Brochure

☐Other: Click here to enter text.

SIGNATURE OF PRINCIPAL INVESTIGATOR Julie Leming April 12, 2017 Principal Investigator Signature Date (Electronic submission of this form by PI indicates signature)

97

Appendix G. Second IRB Amendment

THE UNIVERSITY OF TEXAS AT TYLER INSTITUTIONAL REVIEW BOARD

IRB MODIFICATION REQUEST

IRB: Sp2017-42

Approved by: G Duke Date: September 13, 2017

Date: September 4, 2017 Principal Investigator: Julie Leming Department: PhD Student IRB #: Sp2017-42 Project Title: The Effect of My Health Companion© on Self-Management and Quality

of Life in Persons with End-Stage Renal Disease: A Multiple Case Study Approach Original Approval Date: January 30, 2017 Please complete all sections as appropriate and submit to the UT Tyler IRB Chair. IDENTIFICATION OF CHANGE(S) A. GENERAL

☒Change in Title of Protocol

☐Resubmission to Grant/Contract Agency

☐Change in Extramural Sponsor

☐Change in Cooperating Institution

☐Change in Status of Protocol (e.g., from "active" to "hold")

Explain any related changes: “A Multiple Case Study Approach” was added to the title. Explain rationale for changes: The title change better reflects the change in study design.

98

Appendix G (Continued).

B. DESIGN

☒Change in Study Design

Explain any related changes: Study design is changed from quasi-experimental pre-test post-test design to multiple case study. Explain rationale for changes: Eight months of working to receive approval from DaVita and medical directors of local dialysis centers proved futile. Changes to recruitment procedures to include social media and use of flyers at public places also failed to result in a reasonable number of participants. C. PERSONNEL

☐Change in investigators, faculty or staff:

Name: Click here to enter text. Credentials: Click here to enter text. Contact Information: Click here to enter text.

☐Change in Consultant/Collaborator

Explain any related changes: Click here to enter text. Explain rationale for changes: Click here to enter text. D. RISK

☐Change In Risk/Benefit Ratio (e.g., emergence of new side effects)


99


E. COST

☐Change in Subject Expense

☐Change in Subject Reimbursement

Explain any related changes: Click here to enter text. Explain rationale for changes: Click here to enter text. F. PROCEDURES INVOLVING SUBJECTS

☐Change in collection of blood or other body fluids

☒Change in subject evaluation (e.g., number of visits, etc.)

☐Change in administration or dosage of drug

☐Change in drug formulation

☐Change/Deletion of any test

☐Change/deletion of device

Explain any related changes: Following the intervention, the researcher will conduct a semi-structured interview with the participant and, when possible, the primary caregiver. Explain rationale for changes: With the case study design, the semi-structured interview adds an additional data source, strengthening the evidence. G. STUDY POPULATION

☒Change in sample size

☐Change in eligibility criteria

☐Change in exclusion criteria

☐Alteration of study groups

☐Other: Click here to enter text. Explain any related changes: Click here to enter text. Explain rationale for changes: Click here to enter text.

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H. SUBJECT RECRUITMENT

☐Change in recruitment procedures

☐Change in ads, flyers, etc.

Explain any related changes: Explain rationale for changes: Click here to enter text. I. OTHER

☐Any other significant changes

Explain any related changes: Click here to enter text. Explain rationale for changes: Click here to enter text. EXPLANATION OF CONSEQUENCES OF CHANGES J. Modifications identified above require changes in:

☒Informed consent form (describe by highlighting or tracking of originally

approved form) K. Will these changes result in a change of the risk/benefit ratio?

☐ Yes ☒ No

If Yes, please explain: Click here to enter text. ELECTRONIC ENCLOSURES AS NEEDED FOR CHANGES INDICATED:

☒Revised Informed Consent Form(s)

☐Letter from Sponsor

☐Letter from Investigators indicating their removal or addition to study

101


☒Revised Protocol (Date of Revised Protocol: Click here to enter text. )

☐Revised IRB Full Board Review Application

☐Revised Investigator's Brochure

☐Other: Click here to enter text.

SIGNATURE OF PRINCIPAL INVESTIGATOR Julie Leming September 4, 2017 Principal Investigator Signature Date (Electronic submission of this form by PI indicates signature)

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Appendix H. Demographic Information

Demographic Information

1. What is your age in years?

2. What is your gender?

a. Male

b. Female

3. What is your marital status?

a. Married

b. Divorced

c. Widow/Widower

d. Never Married

4. What is your employment status?

a. Employed

b. Unemployed

c. Retired

5. What is your race?

a. African-American/Black

b. Asian

c. Native American/ Alaskan Native

d. White/ Caucasian

e. Mixed

f. Other (specify):

103

Appendix H (Continued).

6. Are you Hispanic?

a. Yes

b. No

7. What is the last grade you completed in school?

8. How long have you been on dialysis (in months)?

9. What is your estimated monthly household income?

a. $0-2000

b. $2001-4000

c. $4000 and above

d. I do not know or I prefer not to answer

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Appendix I. Self-Efficacy for Managing Chronic Disease 6-Item Scale

Self-Efficacy for Managing Chronic Disease 6-Item Scale

We would like to know how confident you are in doing certain activities. For each of the

following questions, please choose the number that corresponds to your confidence that you can

do the tasks regularly at the present time.

1. How confident are you that you can keep the fatigue caused by your disease from interfering with the things you want to do?

not at all | | | | | | | | | | totally confident 1 2 3 4 5 6 7 8 9 10 confident

2. How confident are you that you can keep the physical discomfort or pain of your disease from interfering with the things you want to do?


3. How confident are you that you can keep the emotional distress caused by your disease from interfering with the things you want to do?


4. How confident are you that you can keep any other symptoms or health problems you have from interfering with the things you want to do?


5. How confident are you that you can do the different tasks and activities needed to manage your health condition so as to reduce you need to see a doctor?


6. How confident are you that you can do things other than just taking medication to reduce how much you illness affects your everyday life?


Scoring

The score for each item is the number circled. If two consecutive numbers are circled, code the

lower number (less self-efficacy). If the numbers are not consecutive, do not score the item. The

score for the scale is the mean of the six items. If more than two items are missing, do not score the

scale. Higher number indicates higher self-efficacy.

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Appendix J. FACIT-F

Below is a list of statements that other people with your illness have said are important.

Please circle or mark one number per line to indicate your response as it applies to

the past 7 days.

PHYSICAL WELL-BEING

Not

at all

A little

bit

Some-

what

Quite

a bit

Very

much

GP1 I have a lack of energy ................................................................... 0 1 2 3 4

GP2 I have nausea ................................................................................. 0 1 2 3 4

GP3 Because of my physical condition, I have trouble meeting the needs

of my family ..................................................................................

0

1

2

3

4

GP4 I have pain ..................................................................................... 0 1 2 3 4

GP5 I am bothered by side effects of treatment..................................... 0 1 2 3 4

GP6 I feel ill ........................................................................................... 0 1 2 3 4

GP7 I am forced to spend time in bed ................................................... 0 1 2 3 4

SOCIAL/FAMILY WELL-BEING

Not

at all

A little

bit

Some-

what

Quite

a bit

Very

much

GS1 I feel close to my friends ............................................................... 0 1 2 3 4

GS2 I get emotional support from my family ........................................ 0 1 2 3 4

GS3 I get support from my friends ........................................................ 0 1 2 3 4

GS4 My family has accepted my illness................................................ 0 1 2 3 4

GS5 I am satisfied with family communication about my

illness .............................................................................................

0

1

2

3

4

106

Appendix J (Continued).

Please circle or mark one number per line to indicate your response as it

applies to the past 7 days.

EMOTIONAL WELL-BEING Not

at all

A little

bit

Some-

what

Quite

a bit

Very

much

GE1 I feel sad ........................................................................................ 0 1 2 3 4

GE2 I am satisfied with how I am coping with my illness .................... 0 1 2 3 4

GE3 I am losing hope in the fight against my illness ............................ 0 1 2 3 4

GE4 I feel nervous ................................................................................. 0 1 2 3 4

GE5 I worry about dying ....................................................................... 0 1 2 3 4

GE6 I worry that my condition will get worse ...................................... 0 1 2 3 4

FUNCTIONAL WELL-BEING

Not

at all

A little

bit

Some-

what

Quite

a bit

Very

much

GF1 I am able to work (include work at home) .................................... 0 1 2 3 4

GS6 I feel close to my partner (or the person who is my

main support) .................................................................................

0

1

2

3

4

Q1 Regardless of your current level of sexual activity, please

answer the following question. If you prefer not to answer

it, please mark this box and go to the next section.

GS7 I am satisfied with my sex life ....................................................... 0 1 2 3 4

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GF2 My work (include work at home) is fulfilling ............................... 0 1 2 3 4

GF3 I am able to enjoy life .................................................................... 0 1 2 3 4

GF4 I have accepted my illness ............................................................. 0 1 2 3 4

GF5 I am sleeping well .......................................................................... 0 1 2 3 4

GF6 I am enjoying the things I usually do for fun ................................ 0 1 2 3 4

GF7 I am content with the quality of my life right now ........................ 0 1 2 3 4

Please circle or mark one number per line to indicate your response as it

applies to the past 7 days.

ADDITIONAL CONCERNS

Not

at all

A little

bit

Some-

what

Quite

a bit

Very

much

HI7 I feel fatigued ....................................................................... 0 1 2 3 4

HI12 I feel weak all over ............................................................... 0 1 2 3 4

An1 I feel listless (“washed out”) ................................................ 0 1 2 3 4

An2 I feel tired ............................................................................. 0 1 2 3 4

An3 I have trouble starting things because I am tired .................. 0 1 2 3 4

An4 I have trouble finishing things because I am tired ............... 0 1 2 3 4

An5 I have energy ........................................................................ 0 1 2 3 4

An7 I am able to do my usual activities ....................................... 0 1 2 3 4

An8 I need to sleep during the day .............................................. 0 1 2 3 4

An12 I am too tired to eat .............................................................. 0 1 2 3 4

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An14 I need help doing my usual activities ................................... 0 1 2 3 4

An15 I am frustrated by being too tired to do the things I want to

do ..........................................................................................

0

1

2

3

4

An16 I have to limit my social activity because I am tired ............ 0 1 2 3 4

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Appendix K. FACIT-F Scoring Guidelines

FACIT-F Scoring Guidelines (Version 4)

FACIT-F Scoring Guidelines (Version 4) – Page 1

Instructions:* 1. Record answers in "item response" column. If missing, mark with an X

2. Perform reversals as indicated, and sum individual items to obtain a score.

3. Multiply the sum of the item scores by the number of items in the subscale, then divide by the number of items answered. This produces the subscale score.

4. Add subscale scores to derive total scores (TOI, FACT-G & FACIT-F).

5. The higher the score, the better the QOL.

Subscale Item Code Reverse item? Item response Item Score

PHYSICAL GP1 4 - ________ =________

WELL-BEING GP2 4 - ________ =________

(PWB) GP3 4 - ________ =________

GP4 4 - ________ =________

GP5 4 - ________ =________

GP6 4 - ________ =________

GP7 4 - ________ =________

Sum individual item scores: ________

Multiply by 7: ________

Divide by number of items answered: ________=PWB

subscale score

SOCIAL/FAMILY GS1 0 + ________ =________

WELL-BEING GS2 0 + ________ =________

(SWB) GS3 0 + ________ =________

GS4 0 + ________ =________

GS5 0 + ________ =________

GS6 0 + ________ =________

GS7 0 + ________ =________



Divide by number of items answered: ________=SWB

subscale score

EMOTIONAL GE1 4 - ________ =________

WELL-BEING GE2 0 + ________ =________

(EWB) GE3 4 - ________ =________

GE4 4 - ________ =________

GE5 4 - ________ =________

GE6 4 - ________ =________



Divide by number of items answered: ________=EWB

subscale score

Score range: 0-28

Score range: 0-28

Score range: 0-24

110

Appendix K (Continued).

FUNCTIONAL GF1 0 + ________ =________

WELL-BEING GF2 0 + ________ =________

(FWB) GF3 0 + ________ =________

GF4 0 + ________ =________

GF5 0 + ________ =________

GF6 0 + ________ =________

GF7 0 + ________ =________



Divide by number of items answered: ________=FWB

subscale score

FACIT-F Scoring Guidelines (Version 4) – Page 2

Subscale Item Code Reverse item? Item response Item Score

FATIGUE HI7 4 - ________ =________

SUBSCALE HI12 4 - ________ =________

(FS) An1 4 - ________ =________

An2 4 - ________ =________

An3 4 - ________ =________

An4 4 - ________ =________

An5 0 + ________ =________

An7 0 + ________ =________

An8 4 - ________ =________

An12 4 - ________ =________

An14 4 - ________ =________

An15 4 - ________ =________

An16 4 - ________ =________

Sum individual item scores:________


Divide by number of items answered: ________=F

Subscale score

To derive a FACIT-F Trial Outcome Index (TOI):

__________ + __________ + __________ =________=FACIT-F

TOI

(PWB score) (FWB score) (FS score)

To Derive a FACT-G total score:

__________ + __________ + __________ + __________=________=FACT-G

Total score

(PWB score) (SWB score) (EWB score) (FWB score)

Score range: 0-28

Score range: 0-108

Score range: 0-108

Score range: 0-52

111

Appendix K (Continued).

To Derive a FACIT-F total score:

_________ + __________ + __________ + __________ + __________ =________=FACIT-F

Total score

(PWB score) (SWB score) (EWB score) (FWB score) (FS score)

*For guidelines on handling missing data and scoring options, please refer to the Administration and

Scoring Guidelines in the manual or on-line at www.facit.org.

Score range: 0-

160

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Appendix L. Personal Resource Questionnaire (PRQ2000)

PERSONAL RESOURCE QUESTIONNAIRE (PRQ2000)

Weinert (Revised from the PRQ85 - Brandt and Weinert)

Below are some statements with which some people agree and others disagree. Please read each statement

and CIRCLE the response most appropriate for you. There is no right or wrong answer. 1 STRONGLY DISAGREE 2 DISAGREE 3 SOMEWHAT DISAGREE 4 NEUTRAL 5 SOMEWHAT AGREE 6 AGREE

7 STRONGLY AGREE

Q-1. There is someone I feel close to who makes me

feel secure.... 1 2 3 4 5 6 7

Q-2. I belong to a group in which I feel important... 1 2 3 4 5 6 7

Q-3. People let me know that I do well at my work

(job, homemaking).... 1 2 3 4 5 6 7

Q-4. I have enough contact with the person who makes me

feel special....... 1 2 3 4 5 6 7

Q-5. I spend time with others who have the same interests

that I do..... 1 2 3 4 5 6 7

Q-6. Others let me know that they enjoy working with me

(job, committees, projects).... 1 2 3 4 5 6 7

Q-7. There are people who are available if I need help

over an extended period of time.... 1 2 3 4 5 6 7

Q-8. Among my group of friends we do favors for

each other........ 1 2 3 4 5 6 7

Q-9. I have the opportunity to encourage other to develop

their interests and skills....... 1 2 3 4 5 6 7

Q-10. I have relatives or friends that will help me out even

if I can't pay them back..... 1 2 3 4 5 6 7

Q-11. When I am upset, there is someone I can be with who

lets me be myself... 1 2 3 4 5 6 7

Q-12. I know that others appreciate me as a person..... 1 2 3 4 5 6 7

Q-13. There is someone who loves and cares about me.. 1 2 3 4 5 6 7

Q-14. I have people to share social events and fun

activities with. 1 2 3 4 5 6 7

Q-15. I have a sense of being needed by another person. 1 2 3 4 5 6 7

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Appendix M. Permission to use PRQ2000

Julie Leming

973 Brad Spann Road

Waskom, TX 75692

Dear Ms. Leming:

Please let this letter serve as your permission to use the PRQ85 or PRQ2000. Any

changes to question stems or answer sets must be approved in advance. Translation of

the PRQ into other languages is acceptable and encouraged. A copy of the translated

version of the PRQ should be sent to me. If you do, in fact, use the PRQ for data

collection in your study, I ask that you send me an abstract of your findings. Should you

have any questions or need clarification, kindly write or e-mail [email protected]. I

will try to respond in a timely manner.

Thank you for your interest in the PRQ. I hope that this social support measure will be

helpful in your research.

Sincerely,

Clarann Weinert, SC,PhD,RN,FAAN

Professor Emerita

www.montana.edu/cweinert


http://www.montana.edu/cweinert

114

Appendix N. Informed Consent

THE UNIVERSITY OF TEXAS AT TYLER

Informed Consent to Participate in Research

Institutional Review Board # Sp2017-42

Approval Date: January 30, 2017

1. Project Title: The Effect of My Health Companion© on Self-Management and Quality of Life in Patients with End Stage Renal Disease: A Multiple Case Study Approach

2. Principal Investigator: Julie Leming, MSN, RN 3. Participant’s Name: To the Participant: You are being asked to take part in this study at The University of Texas at Tyler (UT Tyler). After talking with the person who asks you to take part in the study, you should be able to:

• Understand what the study is about.

• Choose to take part in this study because you understand what will

happen

4. Description of Project The purpose of this research is to see if using a tool called My Health Companion© helps people with end-stage renal disease manage their illness and have better quality of life. If you agree to be in this study, we will ask you to do the following things:

• Meet with the researcher to complete surveys that ask questions about managing your end stage renal disease. This will take about an hour.

• Use a tool called My Health Companion© to help manage your health information. My Health Companion© is a notebook that will be provided to you. It has different sections related to health. You will fill in the different sections over 12 weeks.

• It will take you about 15 minutes each time to fill this out.

• Meet at 6-weeks and at the end of the 12 weeks to repeat the surveys and participate in an interview about My Health Companion© and your life on dialysis.

115

Appendix N (Continued).

• Allow your primary caregiver to participate in an interview about living with and caring for you.

6. Side Effects/Risks It is possible you may become upset when answering questions about your managing your renal disease. Although we do not expect this to be a common problem, the researcher will refer you to a qualified social worker if you need help. If you become tired while answering questions, you are welcome to take a break for as long as you need to.

7. Potential Benefits New tools are needed to help patients on dialysis manage their health. My Health Companion© may help you better understand your health and end stage renal disease and to communicate better with your health care providers. Understanding of Participants 8. I have been given a chance to ask any questions about this research

study. The researcher has answered my questions. 9. If I sign this consent form I know it means that:

• I am taking part in this study because I want to. I chose to take part in this study after having been told about the study and how it will affect me.

• I know that I am free to not be in this study. If I choose to not take part in the study, then nothing will happen to me as a result of my choice.

• I know that I have been told that if I choose to be in the study, then I can stop at any time. I know that if I do stop being a part of the study, then nothing will happen to me.

• I will be told about any new information that may affect my wanting to continue to be part of this study.

• The study may be changed or stopped at any time by the researcher or by The University of Texas at Tyler.

• The researcher will get my written permission for any changes that may affect me.

116


10. I have been promised that my name will not be in any reports about this study unless I give my permission.

11. I also understand that any information collected during this study may be

shared as long as no identifying information such as my name, address, or other contact information is provided). This information can include health information. Information may be shared with:

• Organization giving money to be able to conduct this study

• Other researchers interested in putting together your information with information from other studies

• Information shared through presentations or publications 12. I understand The UT Tyler Institutional Review Board (the group that

makes sure that research is done correctly and that procedures are in place to protect the safety of research participants) may look at the research documents. These documents may have information that identifies me on them. This is a part of their monitoring procedure. I also understand that my personal information will not be shared with anyone.

13. I have been told about any possible risks that can happen with my taking

part in this research project.

14. I also understand that I will not be given money for any patents or discoveries that may result from my taking part in this research.

15. If I have any questions concerning my participation in this project, I will contact the principal researcher: Julie Leming at (903)503-2012 or email [email protected].

16. If I have any questions concerning my rights as a research subject, I will

contact Dr. Gloria Duke, Chair of the IRB, at (903) 566-7023, [email protected], or the University’s Office of Sponsored Research: The University of Texas at Tyler c/o Office of Sponsored Research 3900 University Blvd Tyler, TX 75799

I understand that I may contact Dr. Duke with questions about research-related injuries.


117


17. CONSENT/PERMISSION FOR PARTICIPATION IN THIS RESEARCH STUDY

I have read and understood what has been explained to me. I give my permission to take part in this study as it is explained to me. I give the study researcher permission to register me in this study. I have received a signed copy of this consent form.

________________________ _ ___ _ ________ _________ Signature of Participant Date

____________________________ _______

Signature of Person Responsible (e.g., legal guardian) _______ ______________ Relationship to Participant

_____________________________________ Witness to Signature

18. I have discussed this project with the participant, using language that is

understandable and appropriate. I believe that I have fully informed this participant of the nature of this study and its possible benefits and risks. I believe the participant understood this explanation.

_______________________________ _______________ Researcher/Principal Investigator Date

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Appendix O. Semi-structured interview-Participant

Semi-structured Interview – Participant

1. How does being on hemodialysis affect your life?

a. Tell me more about that.

2. Tell me about the things you do to take care of yourself since you

started dialysis.

3. Did using My Health Companion© help you?


4. Will you continue using My Health Companion©?

a. Why or why not?

119

Appendix P. Semi-structured interview-Caregiver

Semi-structured Interview – Caregiver

1. How does caring for someone on hemodialysis affect your life?

a. Tell more about that.

2. How do you see your loved one take care of him/herself?

3. Did using My Health Companion© help?


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Biographical Sketch

NAME

Julie D. Leming

POSITION TITLE

Professor of Nursing

COMMONS USER NAME (credential,

e.g. agency login

JLEMING

EDUCATION/TRAINING

INSTITUTION AND LOCATION DEGREE YEAR(S) FIELD OF STUDY

Kilgore College

A.D.N. 05/1993 Nursing




B.S.N.

M.S.N.

PhD

12/2006

08/2011

05/2018

Nursing

Nursing Education

Nursing

A. Personal Statement

My research interests include persons with ESRD undergoing hemodialysis and

the effects on the individual and the family. My doctoral research has explored the

psychosocial effects of this disease and the effects of My Health Companion, a

personal health record for self-management. My post-graduate research will focus

on developing a patient-centered self-management tool that assists with

psychosocial adaptation and increases quality of life in persons with ESRD.

B. Positions and Employment

2000-2010 School Nurse and HSTE Teacher, Elysian Fields, TX

2010-2011 Field Nurse, Good Shepherd Home Health, Marshall, TX

2011-2013 Clinical Instructor, The University of Texas at Tyler, Tyler, TX

2013-2016 Assistant Professor, East Texas Baptist University, Marshall, TX

2016-2017 Adjunct Professor, LeTourneau University, Longview, TX

2017-2018 Professor, Panola College, Carthage, TX

Academic and Professional Honors.

Alpha Chi 2006

Sigma Theta Tau International Honor Society of Nursing 2010

Phi Kappa Phi 2015

Certified Nurse Educator 2015

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C. Publications

Leming, J. (2016). The emotional toll of end-stage renal disease: Differentiating

between social isolation, loneliness, and disengagement. The CANNT

Journal, 26(3), 9-14.

Documents

THE EFFECT OF MY HEALTH COMPANION© ON SELF …