AFFILIATE STIGMA AND EMPOWERMENT AMONG FAMILY MEMBERS OF

INDIVIDUALS WITH CHRONIC PSYCHIATRIC CONDITIONS

By

SHARON MARIE SOWELL

A dissertation submitted in partial fulfillment of

the requirements for the degree of

DOCTOR OF PHILOSOPHY

WASHINGTON STATE UNIVERSITY

Department of Psychology

DECEMBER 2019

© Copyright by SHARON MARIE SOWELL, 2019

All Rights Reserved
© Copyright by SHARON MARIE SOWELL, 2019
All Rights Reserved
To the Faculty of Washington State University:

The members of the Committee appointed to examine the dissertation

of SHARON MARIE SOWELL find it satisfactory and recommend that it be accepted.

Tammy D. Barry, Ph.D., Chair

Walter Scott, Ph.D.

Christopher Barry, Ph.D.

ii
 ACKNOWLEDGEMENT

I would first and foremost like to thank Dr. Tammy Barry for taking over the role of my

dissertation chair after I have been on medical leave for a number of years. I could not have done

this without her steadfast support, as well as patience and understanding regarding my current

medical limitations. I would like my previous chair Dr. Dennis Dyck for his belief in me and my

ideas, support, and ongoing guidance throughout the bulk of the study and both he and John Roll

for financial support for me to attend the NAMI National Convention in 2011 for recruitment

purposes. I would also like to thank my other committee members over the years, who have

shifted while I have been on medical leave. These include my initial committee: Dr. Leonard

Burns and Dr. Paul Kwon and my current committee: Dr. Walter Scott and Dr. Christopher

Barry.

I would like to thank Meredyth Goodwin, Director of Washington State University’s

Access Center, who has been very helpful in brainstorming with Dr. Tammy Barry and myself

regarding appropriate accommodations to better allow me to accomplish this goal.

Finally, I would like to thank NAMI National’s Medical Director Dr. Ken Duckworth for

approving the study and allowing recruitment to take place and perhaps, most importantly, each

and every family member who was able and willing to give his or her time and energy to

participate in the study. I am sure it was not easy to answer many personal questions about

sometimes negative experiences with those whom they love so dearly.

iii
 AFFILIATE STIGMA AND EMPOWERMENT AMONG FAMILY MEMBERS OF

INDIVIDUALS WITH CHRONIC PSYCHIATRIC CONDITIONS

Abstract

by Sharon Marie Sowell, Ph.D.

Washington State University
December 2019

Chair: Tammy D. Barry

The relation between stigma and chronic psychiatric conditions has been well

documented. Family stigma, a type of courtesy or associate stigma, and its internalized version,

affiliate stigma, have been less examined but are nonetheless recognized. In the United States

alone, over four million families are affected by stigma due to their relationship with a family

member with a chronic psychiatric condition. Whereas a large effort has been undertaken to

better understand and attenuate public stigma related to chronic psychiatric conditions, less

research has been conducted to understand how to combat affiliate stigma. Interventions are

needed to reduce this type of stigma at an individual level. Increasing family members’ feelings

of personal empowerment is one intuitive strategy to reduce affiliate stigma. This goal is also

shared among self-help/mutual aid (SHMA) groups, such as the National Alliance on Mental

iv
Illness (NAMI), which allows family members of individuals with chronic psychiatric conditions

to come together to improve their lives in the face of stigmatization. The current study aimed to

examine the differences between participants involved in NAMI and non-NAMI participants on

stigma and empowerment as well as other adjustment and functioning variables, including

depression and quality of life. Relations among these variables of interest across the sample were

also examined. Group differences (NAMI versus non-NAMI) did not definitively emerge on

variables of interest. However, when examining across the full sample, results indicated that

empowerment was negatively related to affiliate stigma and depression, as well as positively

related to quality of life, among family members of individuals with chronic psychiatric

conditions. Furthermore, the cognitive component of affiliate stigma was positively related to

depression and negatively related to mental quality of life, whereas perceived family stigma was

positively related to depression. Theoretical and clinical implications of these findings are

discussed.

v
 TABLE OF CONTENTS

Page

ACKNOWLEDGEMENT ............................................................................................................. iii

ABSTRACT ................................................................................................................................... iv

LIST OF TABLES ......................................................................................................................... ix

CHAPTER ONE: INTRODUCTION ............................................................................................. 1

Stigma and Empowerment in Relation to Individuals with Chronic Psychiatric Conditions ..... 1

Family Stigma ............................................................................................................................. 3

Affiliate Stigma ........................................................................................................................... 5

Empowerment ............................................................................................................................. 7

Family Impact ........................................................................................................................... 10

Stigma Reduction and Empowerment ....................................................................................... 12

Reducing family stigma ........................................................................................................ 12

Reducing affiliate stigma ...................................................................................................... 13

Increasing empowerment ...................................................................................................... 14

Exemplar of a SHMA Group: The National Alliance on Mental Illness (NAMI) .................... 18

Purpose of Current Study .......................................................................................................... 20

Hypotheses. ........................................................................................................................... 21

CHAPTER TWO: METHOD ....................................................................................................... 22

Participants ................................................................................................................................ 22

Measures.................................................................................................................................... 22

vi
 Demographic questionnaire .................................................................................................. 22

Affiliate stigma. .................................................................................................................... 22

Perceived family stigma. ....................................................................................................... 23

Personal empowerment ......................................................................................................... 23

Depression............................................................................................................................. 24

Quality of life. ....................................................................................................................... 24

Procedure ................................................................................................................................... 25

CHAPTER THREE: RESULTS ................................................................................................... 26

Data Management ..................................................................................................................... 26

Preliminary Analyses ................................................................................................................ 26

Correlations among variables of interest. ............................................................................. 26

Potential covariates. .............................................................................................................. 27

Tests of Hypotheses .................................................................................................................. 27

Hypothesis 1.......................................................................................................................... 27

Hypothesis 2.......................................................................................................................... 29

Hypothesis 3.......................................................................................................................... 30

Hypothesis 4.......................................................................................................................... 30

Post-hoc analyses. ..................................................................................................................... 31

CHAPTER FOUR: DISCUSSION ............................................................................................... 32

Support for Hypotheses and Theoretical Implications .............................................................. 32

vii
 Limitations of the Current Study ............................................................................................... 35

Future Directions ....................................................................................................................... 37

Clinical Implications ................................................................................................................. 38

General Implications ............................................................................................................. 38

Possible Specific Implications: NAMI’s Family-to-Family Education Program (FFEP). ... 39

Conclusions ............................................................................................................................... 41

References ..................................................................................................................................... 43

viii
 LIST OF TABLES

1. Descriptives of the Sample (by Group and Total) ...................................................................59

2. Descriptives of Variables of Interest........................................................................................60

3. Intercorrelations of Variables of Interest .................................................................................61

4. Zero-Order Correlations between Potential Covariates and Variables of Interest ..................62

5. Independent Samples t-tests Examining Variables of Interest by NAMI Participation

(Hypothesis 1) ..........................................................................................................................63

6. Independent Samples t-tests Examining Variables of Interest by NAMI Participation Using

Random Sampling for Equivalent Groups (Hypothesis 1) ......................................................64

7. Analysis of Covariance Examining Variables of Interest by NAMI Participation

(Hypothesis 1) .........................................................................................................................65

8. Intercorrelations between Personal Empowerment and Stigma (Hypothesis 2) ......................66

9. Intercorrelations among Stigma and Depression and Quality of Life (Hypothesis 3) .............67

10. Intercorrelations between Personal Empowerment and Depression and Quality of Life

(Hypothesis 4) ..........................................................................................................................68

ix
 CHAPTER ONE: INTRODUCTION

Stigma associated with chronic psychiatric conditions is not only experienced by

individuals with those conditions but also it impacts those who are in relationships with

individuals with them (e.g., family members, friends). The current study examined the concepts

of perceived family stigma and affiliate stigma as they apply to family members of individuals

with chronic psychiatric conditions. Furthermore, empowerment is both theoretically associated

with affiliate stigma and ties into the goals of self-help/mutual aid (SHMA) groups, such as the

National Alliance for Mental Illness (NAMI). Both stigma and empowerment have been linked

to adjustment and functioning, including depression and quality of life. The current study

examined whether these constructs differed among family members who participated in NAMI

as compared to those who did not. Furthermore, the complex relation of stigma and

empowerment as they relate to depression and quality of life among family members of an

individual with a chronic psychiatric condition was examined. Establishing these potential group

differences and relations among key constructs is an important first step in establishing whether

participation in such SHMA groups can lead to better outcomes for family members as well as

aid in disentangling the process by which they may help.

Stigma and Empowerment in Relation to Individuals with Chronic Psychiatric Conditions

Since the publication of Stigma: Notes on the Management of Spoiled Identity (Goffman,

1963), various conceptions of stigma have emerged across multiple fields of study (see Hinshaw

& Stier, 2008; Link & Phelan, 2001). However, an element that is necessary for the development

and maintenance of stigma is missing from many of its definitions—this element is power (see

Link & Phelan, 2001), and this loss of power or control can be seen in decrements in both

subjective feelings of powerlessness and objective social status. The issue of power aside, there

1
is continuing debate about both the conceptualization and utility of the stigma construct (Link,

Yang, Phelan, & Collins, 2004); however, it is widely agreed upon that individuals who are

stigmatized are societally less valued and accepted (Goffman, 1963).

This latter characterization of stigma is especially the case for individuals with chronic

psychiatric conditions, who are more stigmatized than those with physical disability (Corrigan,

Kuwabara, & O'Shaughnessy, 2009) and probably more than any other illness (Sartorius, 2007)

and may actually be more debilitated by stigma than the conditions themselves (e.g., Corrigan &

Penn, 1999). These experiences are in part due to the public’s misconceptions that individuals

with chronic psychiatric conditions are responsible for their disorders (i.e., attribution theory; see

Weiner, 1995), dangerous, unpredictable, weak (e.g., Corrigan & Wassel, 2008; Corrigan &

Shapiro, 2010), incompetent (e.g., Corrigan & Shapiro, 2010), and unlikely to improve with

treatment (Hayward & Bright, 1997). Stigma toward individuals with chronic psychiatric

conditions prevents them from disclosing to others that they are struggling (Otey & Fenton,

2004; Vogel, Wade, & Hackler, 2007; label avoidance, Corrigan & Wassel, 2008), from seeking

treatment (Corrigan & Wassel, 2008), from achieving life goals (e.g., finding employment and

equal pay, independent living, personal relationships, and wellness/healthcare; Corrigan, Rafacz

et al., 2010; Link, 1987; Link & Phelan, 2001), and increases likelihood of relapse (Penn et al.,

1994; Wright, Gronfein, & Owens, 2000). Finally, it often leads to self-stigma (i.e., the

internalization of public stigma; Corrigan & Watson, 2002; Wong, Kong, Tu, & Frasso, 2018).

Research also indicates that the perception of being stigmatized alone leads to

consequences such as depressive symptoms (e.g., Phelan, Bromet, & Link, 1998), significant

decreases in subjective quality of life (Chou, Pu, Lee, Lin, & Kroger, 2009), social isolation,

emotional distress (Goffman, 1963), and withdrawal from supports (e.g., Fadden, Bebbington, &

2
Kuipers, 1987)—whether or not the stigma actually exists. In fact, perceived rejection, stigma,

and discrimination better predict demoralization and isolation than the presence of a mental

illness (e.g., Markowitz, 1998; Sirey et al., 2001) among individuals with chronic psychiatric

conditions. In addition, the expectation of and fear of being stigmatized has been found to impair

self-esteem (Wright et al., 2000), has been linked to poorer life satisfaction (Rosenfield, 1997),

and undermines interpersonal and other abilities (Farina, Gliha, Boudreau, Allen, & Sherman,

1971).

Family Stigma

Research shows that family members of individuals with chronic psychiatric conditions

also experience stigma, both directly (i.e., when it is aimed at them) and indirectly (i.e., when

they observe it being aimed at their relative; Angermeyer, Schulze, & Dietrich, 2003). Indeed,

sometimes it is difficult for family members to delineate whether the negative reactions are

directed toward themselves or toward their relatives (Angermeyer et al., 2003).

Family members also directly and indirectly experience stigma related to interpersonal

interaction (e.g., limited contact with mental health professionals) and structural discrimination

(e.g., financial impact, poor performance of health insurance; Angermeyer et al., 2003). They

further indirectly experience stigma related to public images of mental illness and access to

social roles as a result of its impact on their mentally ill family member. Family members’

experiences of stigma have been conceptualized as including two domains: public (i.e.,

interpersonal and institutional) and private (i.e., interpersonal and internalized; Muhlbauer,

2002). Examples of private family stigma include no longer being invited to social events and

being met with embarrassed silence when the family member with a chronic psychiatric

condition is mentioned in conversation (Flynn, 1987).

3
 Blame, shame, and contamination are central themes of family stigma (Corrigan &

Miller, 2004; Corrigan et al., 2006). Family members often feel that they are being blamed for a

mentally ill family member’s onset of illness (e.g., poor parenting) or relapse (e.g., poor support)

and that they are seen as incompetent family members or caregivers (Corrigan Watson, & Miller,

2006; Larson & Corrigan, 2008), which often results in feelings of shame. Furthermore, family

members often feel that they are being left out of their relative’s treatment (Gray, Robinson,

Seddon, & Roberts, 2009). They also experience diminished self-worth because of their close

association with a stigmatized person, a concept referred to as contamination. Contamination

particularly affects children of individuals with chronic psychiatric conditions (Corrigan et al.,

2006; Larson & Corrigan, 2008).

Whereas one study related to family stigma did not find strong evidence that the general

public endorses (or discloses) family stigma related to chronic psychiatric conditions, this starkly

contrasts with family members’ perceptions of and lived experiences related to family stigma

(e.g., Corrigan et al., 2006). Family members of individuals with chronic psychiatric conditions

undeniably perceive family stigma to be a major issue (Wahl, 1999; Wahl & Harman, 1989). In

one study, between 43% and 92% of family members felt stigmatized to some extent (e.g.,

Struening et al., 2001). In a mail survey of members of NAMI, over half (56%) of family

members said that families of those with chronic psychiatric conditions are much or very much

affected by stigma related to chronic psychiatric conditions, and approximately one-fifth of the

family members indicated that stigma damaged their family relationships (20-22%; Wahl &

Harman, 1989). Another study of NAMI-members found that more than a third (36%) of family

members felt stigmatized by people in their community and/or the mental health system itself

(Drapalski et al., 2008). A German postal survey showed that 30% of family members felt as if

4
they had experienced discrimination (e.g., withdrawal, assignment of guilt, defamation, negative

reactions) as a result of stigma related to their relative with a chronic psychiatric condition

(Angermeyer & Matschinger, 1997). A study that, in part, looked at perceived devaluation of

family members of individuals with chronic psychiatric conditions found that approximately

43% of family members felt that most people devalue them because of their relationship with

their relative with a chronic psychiatric condition (Struening et al., 2001), and between 25% and

50% of family members in various studies have indicated that their relationships with relative

with chronic psychiatric conditions are a source of shame to their families and should be kept

hidden (Angermeyer, Schulze, & Dietrich, 2003; Ohaeri & Fido, 2001; Phelan et al., 1998;

Phillips, Pearson, Li, Xu, & Yang, 2002; Struening et al., 2001; Thompson & Doll, 1982; Wahl

& Harman, 1989). As these studies show, family members perceive that they are being

stigmatized by the public whether or not the public explicitly endorses such attitudes.

Affiliate Stigma

There is evidence that family members of individuals with chronic psychiatric conditions

internalize family stigma in the same manner that individuals with chronic psychiatric conditions

will oftentimes internalize public stigma (i.e., self-stigma; Wong et al., 2018). This phenomenon

of internalizing family stigma is known as affiliate stigma (Mak & Cheung, 2008). Self-reported

affiliate stigma has been found to strongly correlate with self-reported perceived family stigma

(Mak & Kwok, 2010). Attributing the cause of the chronic psychiatric conditions to the family

and viewing the family as an extension of the condition are two hypothesized reasons why

family members internalize such stigma (Lefley, 1992). Similarly, perceptions of less

controllability, more responsibility, and self-blame interplay in the internalization process among

families of some chronic psychiatric conditions (Mak & Kwok, 2010; Mak et al., 2007). In a

5
study based on healthcare providers’ understanding of family caregivers’ emotions (Gray et al.,

2009, p. 127), family caregivers were said to go through “many highly troubling feelings,

including guilt, grief, helplessness, anger, sadness, despair, frustration, hatred, isolation, anxiety,

disempowerment, worry, loneliness, shame, depression, desperation, denial, stress and believing

that they have no future” (emphasis added).

Affiliate stigma is detrimental to family members, as it is associated with decreases in

overall psychological well-being (Mak & Kwok, 2010) and increases in subjective family impact

(Mak & Cheung, 2008). As with other types of stigma, it includes cognitions, affect, and

behavioral responses (Mak & Cheung, 2008). Cognitively, family members develop negative

self-evaluations (Corrigan & Watson, 2002) and self-perceptions (Green, Hayes, Dickinson,

Whittaker, & Gilheany, 2003; Wahl & Harman, 1989) that tarnish self-esteem (Green et al.,

2003; Wahl & Harman, 1989) and may even lead to suicidal thoughts (Mak & Cheung, 2008).

Affectively, family members of individuals with chronic psychiatric conditions experience

heightened negative emotions (Corrigan & Watson, 2002), such as unhappiness and helplessness,

about their relation to their stigmatized family member (Muhlbauer, 2002; Pachankis, 2007) as

well as feelings of fear, guilt, shame, embarrassment, inferiority, and despondence regarding

their caregiving role (Mak & Cheung, 2008; Muhlbauer, 2002). They often feel that their only

meaning in life is that of a caregiver (Mak & Cheung, 2008). Behaviorally, family members

often feel the need to conceal the status of their ill relative from others (including professionals,

neighbors, and friends; Carson & Manchershaw, 1992; Corrigan & Watson, 2002; Mak &

Cheung, 2008; Muhlbauer, 2002; Perlick et al., 2007) to avoid scrutiny and stigmatization.

Avoidance of others, including their social supports and possibly even their ill relative (Corrigan

& Watson, 2002; Gray et al., 2009; Mak & Cheung, 2008; Pachankis, 2007), is also common.

6
Such avoidant coping often results in family members feeling defined by their caregiving role,

unable to leave the family home, and isolated from others (Muhlbauer, 2002; Peternelj-Taylor &

Hartley, 1993). With the knowledge that social support is a buffer against recurrence of

depression, it is not surprising that family members’ levels of perceived stigma have been found

to be positively correlated to depressive symptoms (Perlick et al., 2007; Perlick et al., 2016).

Empowerment

Empowerment is a construct that repeatedly emerges in the stigma literature. Whereas its

definition varies, it is often associated with personal control (i.e., active and ongoing engagement

in one’s social world; Lord & Hutchison, 1993; Rappaport, 1987; Swift & Levine, 1987). An

important theme in the empowerment literature is that empowerment must be proactively sought

out by disempowered individuals (e.g., family members of individuals with chronic psychiatric

conditions) whose needs are not being met and whose rights are being denied (Swift & Levine,

1987). These are the individuals who exercise control, as they feel appropriate, to improve their

situation (Foucault, 1980; Wallerstein, 1992; Zimmerman, 1990). Establishing this type of

control is exactly what family members of individuals with chronic psychiatric conditions have

done in establishing and maintaining SHMA support groups.

Empowerment has been conceptualized as including five factors: self-esteem and self-

efficacy, power and powerlessness, community activism and autonomy, optimism and control

over the future, and righteous anger (Rogers, Chamberlin, Ellison, & Crean, 1997), two

orientations (i.e., self- and community-orientations; Corrigan, Faber, Rashid, & Leary, 1999),

and three levels (i.e., individual, small group, and community levels; Labonte, 1990; Lord &

Hutchison, 1993; Wilson, 1996). In relation to internalized public (or family) stigma, the first

empowerment orientation (i.e., self-orientation to empowerment) refers to a one’s feelings of

7
self-worth and self-efficacy despite public (or family) stigma; community-orientation to

empowerment refers to one’s interest in reducing public (or family) stigma (Corrigan et al.,

1999). Empowerment at the individual level (i.e., psychological or personal empowerment)

refers to the enhancement of self-efficacy and self-esteem, increases in one’s personal sense of

control (Labonte, 1990; Lord & Hutchison, 1993; Wilson, 1996; Zimmerman & Rappaport,

1988), and improvement in self-concept or personal circumstances (Foucault, 1980). Self-

efficacy of individual family members (i.e., self-orientation/individual level empowerment) is

crucial in providing the foundation for the collective self-efficacy that sustains SHMA support

groups (O’Grady, 2004).

The inverse relation between self-stigma and empowerment has been described, although

some would argue that there is little empirical support for that negative relation (Lundberg,

Hansson, Wentz, & Bjorkman, 2009). Other investigators underscore the lack of clarity

regarding the dynamic relationship (Wright et al., 2000; Corrigan & Penn, 1999). Some authors

have claimed that the two are opposites or on opposite ends of the same continuum (Corrigan et

al., 1999; Corrigan & Wassel, 2008; Ritsher, Otilingam, & Grajales, 2003; Corrigan, Morris et

al., 2010). Others have stated that low self-esteem that results from self-stigma (Rusch, Lieb,

Bohus, & Corrigan, 2006) and dependency (Traunstein, 1984) are the polar opposites of

empowerment. Such dependency is conceivably due to lowered sense of mastery and self-

efficacy.

Lower levels of perceived control over a stigmatizing condition have been associated

with higher levels of self-reported self-stigma (Mak et al., 2007); similarly, individuals are less

likely to perceive and internalize stigma if they feel they have power regarding life decisions

(including mental health services; Corrigan et al., 1999; Corrigan & Watson, 2002). In addition,

8
individuals who believe that stigmatization (or discrimination) toward them is legitimate have

lower levels of empowerment, self-efficacy, and self-esteem (Rusch, Lieb et al., 2006; Watson,

Corrigan, Larson, & Sells, 2007). Self-efficacy (a component of empowerment) has been found

to mediate the effects of stigma (Rosenfield, 1997), and group identification and association with

a stigmatized group has been found to increase empowerment and, thus, diminish self-stigma

(Jetten, Branscombe, Schmitt, & Spears, 2001). Interviews have revealed that directly and

immediately confronting stigma has been found to be empowering and self-enhancing to

individuals using mental health services (Wahl, 1999). This latter finding is likely to be the case

with family members of individuals with chronic psychiatric conditions as well. Overall,

however, the relation between personal empowerment and affiliate stigma has not been explored

and is one focus of the current study.

Empowerment outcomes include both subjective experiences (e.g., feelings of

competency, self-worth, and power) and objectively improved opportunities (for individuals with

chronic psychiatric conditions, this could mean housing, jobs, income, social status; for family

members of individuals with chronic psychiatric conditions, this could mean increased social

support); such improved conditions are then also resources for empowerment (Everett, 1997). In

individuals with chronic psychiatric conditions, empowerment has been said to increase service

utilization (Corrigan, Larson, & Rusch, 2009), improve quality of life, as well as independent

social functioning (Segal, Silverman, & Temkin, 1995), and has been deemed essential for

recovery (Fisher, 1994; Byrne, 2000). It is central to controlling or challenging self-stigma

(Rogers et al., 1997; Wallerstein, 1992), and is viewed as an “anti-stigma” approach (Wahl,

1999, p. 474; Hansson & Bjorkman, 2005)—a way for stigmatized individuals to transform their

environments, gain control of their lives (Wallerstein, 1992), and enhance goal attainment

9
(Corrigan, Larson et al., 2009). Whereas public stigma encumbers one’s ability to become

empowered (Lord & Hutchison, 1993), research has shown that the aggressive treatments that

increase empowerment (e.g., improve individuals’ sense of mastery and self-esteem) can offset

at least some of the negative effects of stigma (Rosenfield, 1997). It is important, however, to

examine this possibility among family members of individuals with chronic psychiatric

conditions as well, a focus of the current study.

Family Impact1

Both the objective impact of caregiving and the subjective impact related to family and

affiliate stigma affect family members’ mental and physical well-being (Corrigan & Miller,

2004; Greenberg, Greenley, McKee, Brown, & Griffin-Francell, 1993; Lefley, 1989; Martens &

Addington, 2001; Szmukler et al., 1996; Struening et al., 2001) and, therefore, quality of life

(Zhang et al., 2018), which is a multidimensional construct that some have described as

including physical, material, social, and emotional wellbeing as well as development and activity

(Felce & Perry, 1995; Zhang et al., 2018).

The responsibility of taking care of someone’s day-to-day needs (e.g., supervision of

medication adherence, transportation, time-consuming caregiving activities), ongoing financial

strain (e.g., cost of treatment, lack of income), restriction from various leisure and social

activities, impaired family functioning, and struggling in the workplace due to anxiety regarding

their family member all impact a family member’s wellbeing (Chadda, 2014; van der Sanden,

Stutterhein, Pryor, Kok, & Bos, 2014). Some express concern about how their roles as caregiver

affect them physically and mentally; some state that they have developed physical ailments, and

1
It has been astutely pointed out that the word “burden” is a stigmatizing word, so the term family impact will be
used instead of family burden (as others have proposed and adopted; Corrigan & Miller, 2004; Gubman & Tessler,
1987).

10
others indicate that the situation has, at times, resulted in suicidal ideation (Chadda, 2014). An

additional concern is that these negative consequences on their health in turn impact their ability

to function well as caregivers (Chadda, 2014).

In addition to the myriad aforementioned stressors related to caregiving, family members

of individuals with chronic psychiatric conditions are also drastically impacted by family stigma,

perceived family stigma, and affiliate stigma. Family stigma results in social exclusion,

marginalization, strained relationships with other family members, and unmet needs; Peternelj-

Taylor & Hartley, 1993; Lefley, 1992; Wahl & Harman, 1989; Drapalski et al., 2008; Chadda,

2014; van der Sanden et al., 2014). It is critical to note that the perception of being stigmatized

also leads to social isolation (Hayes, Hawthorne, Farhall, O’Hanlon, & Harvey, 2015), emotional

distress (Goffman, 1963), depressive symptoms (e.g., Phelan et al., 1998), withdrawal from

supports (e.g., Fadden et al., 1987), and significant decreases in subjective quality of life (Chou

et al., 2009). In fact, perceived rejection, stigma, and discrimination better predict demoralization

and isolation than the presence of a chronic psychiatric condition (e.g., Markowitz, 1998; Sirey

et al., 2001). The expectation of and fear of being stigmatized has been found to erode self-

esteem (Wright et al., 2000), has been linked to poorer life satisfaction (Rosenfield, 1997), and

undermines interpersonal and other abilities (Farina et al., 1971). It has been suggested that

family members’ levels of perceived stigma likely impact their mental health by limiting their

coping effectiveness (e.g., avoidance coping; Perlick et al., 2007). It also results in family

members being painfully aware of their family member being shunned by society (Chadda,

2014).

Affiliate stigma, in particular, has been found to be significantly interconnected to

subjective family impact (Mak & Cheung, 2008). Examples of such impact include lowered self-

11
esteem, damaged self-image and self-worth, and feelings of helplessness; Lefley, 1992; Wahl &

Harman, 1989; Peternelj-Taylor & Hartley, 1993). Each of these levels and facets of family

stigma drastically compound and affect family impact and even family members’ thoughts

regarding life and death (Ostman & Kjellin, 2002).

Stigma Reduction and Empowerment

Reducing family stigma. Significant efforts have been made to reduce the public stigma

related to chronic psychiatric conditions (e.g., Corrigan & Penn, 1999), with some promise in

outcomes (e.g., Corrigan, Rafacz et al., 2010; Corrigan et al., 2002; Corrigan & Penn, 1999;

Keane, 1990; Penn et al., 1994; Penn & Corrigan, 2002; Penn, Kommana, Mansfield, & Link,

1999; Thornton & Wahl, 1996). However, the effects do not always maintain over time

(Corrigan et al., 2002) and often do not translate to decreases in discriminatory behavior (Larson

& Corrigan, 2008). Likewise, many studies are based on self-report measures of stigma to

determine the impact of stigma reduction efforts. This is problematic when considering that self-

report regarding sensitive topics, such as stigma, are especially subject to social desirability

biases and correlate only minimally with measures of behavioral discrimination (Dovido,

Kawakami, Johnson, Johnson, & Howard, 1997; Greenwald & Banaji, 1995).

Although it seems intuitive that reducing public stigma should reduce family stigma, the

literature is lacking in studies that demonstrate this effect. Several recommended strategies for

reducing family stigma have been described (e.g., include family members in treatment, directly

address family stigma in treatment, develop coping strategies for family members, among other

techniques) but have not, at this point, been empirically tested (Larson & Corrigan, 2008). One

specific strategy recommended is for family members to explore their experiences related to

family stigma with others in supportive environments (Larson & Corrigan, 2008), such as self-

12
help/mutual aid (SHMA) support groups. These groups strive to reduce family stigma and its

associated discrimination (Corrigan et al., 2006), and some (i.e., NAMI) provide specific

programs designed for family members (i.e., the Family to Family Education Program) and

mental health providers (i.e., the Provider Education Program; see www.nami.org).

Reducing affiliate stigma. Once stigma has been internalized, therapeutic interventions

potentially become more valuable. These interventions include cognitive therapies to combat

specific self-stigma beliefs, motivational interviewing regarding disclosure of chronic psychiatric

conditions (as disclosing one’s chronic psychiatric condition to others can, in some

circumstances, reduce the negative effects of self-stigma; Corrigan, Morris et al., 2010),

psychodynamic approaches to address unconscious processes, and “identifying life goals,

cultivating strengths, and building personal skills;” Hayward & Bright, 1997; Larson &

Corrigan, 2010, p. 526; Rusch, Corrigan, Todd, & Bodenhausen, 2010). Broader approaches to

decreasing self-stigma include changing the way chronic psychiatric conditions are

conceptualized (Hayward & Bright, 1997). There has been some limited research addressing

therapeutic interventions’ efficacy in reducing self-stigma and its related consequences in

individuals with chronic psychiatric conditions, but findings are limited and not conclusive

(Knight, Wykes, & Hayward, 2006; MacInnes & Lewis, 2008). Based on the limited findings, it

seems that the potential for lessening effects of self-stigma therapeutically requires further

investigation (Knight et al., 2006).

Again, it seems intuitive that strategies to reduce affiliate stigma could be modeled on

those used to decrease self-stigma. Some related activities have been examined in family

members of individuals with chronic psychiatric conditions. Such activities include cognitive-

behavioral therapy to address irrational self-statements that individuals perceive as legitimate

13
(i.e., self-blame; Mak & Kwok, 2010), disclosure of one’s relationship to someone with a

chronic psychiatric conditions to others to alleviate the shame and anxiety that comes from

secrecy and to facilitate meeting others with similar difficulties (Corrigan & Wassel, 2008), and

affiliating and identifying with a group (e.g., SHMA support group), the latter of which is the

primary focus of the current study.

Increasing empowerment. It seems that increases in personal empowerment should

ameliorate the effects of internalized stigma in both individuals with chronic psychiatric

conditions and their family members, as both groups experience decrements in self-esteem, self-

efficacy, and overall psychological well-being. However, no research to date has examined this

in family members of individuals with chronic psychiatric conditions.

Enhancing personal empowerment has been said to be a central component to reducing

self-stigma (Larson & Corrigan, 2008; Rogers et al., 1997). Participation in SHMA support

groups is one way to promote such empowerment (e.g., Corrigan & Wassel, 2008; Larson &

Corrigan, 2008; Larson & Corrigan, 2010). SHMA support groups provide avenues for future

investigation of both internalized stigma and personal empowerment in family members of

individuals with chronic psychiatric conditions. Indeed, feelings of powerlessness, lack of choice

and control, and disenfranchisement of those receiving mental health services (McLean, 1995)

and their family members have led to an increase in SHMA support groups across the country.

Engagement in SHMA groups allows family members to pool their strength, become

empowered, and “[challenge] that which [has] crushed them as individuals” (i.e., family stigma;

Battaglino, 1987, p. 44). It allows them to overcome isolation (resultant from family and affiliate

stigma), promotes a “sense of group action toward larger ends” (Hinshaw & Stier, 2008, p. 386),

and regain self-confidence and self-esteem (Segal et al., 1995). However, literature on the effects

14
of such participation on self-stigma is lacking and even more lacking is the literature on whether

such efforts reduce affiliate stigma.

Available research suggests that participation in educational and support groups has been

found to decrease levels of distress in family caregivers of individuals with chronic psychiatric

conditions (e.g., Khoshknab, Sheikhona, Rahgouy, Rahgozar, & Sodagari, 2014), particularly

among families of an individual with schizophrenia (Hazel et al., 2004)—a chronic psychiatric

condition shown in some studies to be most related to affiliate stigma (e.g., Chang et al, 2017;

Grover et al., 2017). A number of items on the distress scale utilized in the study by Hazel and

colleagues tap into perceived controllability of life situations (Perceived Stress Scale; Cohen,

Kamarck, & Mermelstein, 1983); it is possible that increases in personal control/empowerment

attenuated affiliate stigma, which decreased family caregiver distress. Similarly, participation in

SHMA groups and their education and support programs, which allow increased group

identification along with strategies which decrease public stigma (e.g., contact, education, and

advocacy/protest), would provide opportunities for family members of individuals with chronic

psychiatric conditions to participate in a number of personal empowerment-enhancing activities.

They provide social and emotional support by non-family and non-professionals, which has been

found to be crucial in reducing affiliate stigma (Mak & Kwok, 2010; Middlebrook, 2006). In

addition, such groups provide a setting for family members to learn strategies to process feelings

of guilt, rejection, shame, and isolation (Angermeyer et al., 2003).

Communities and treatment systems, such as SHMA support groups, have the power to

shape and reshape stigmatized groups’ self-concepts (Wright et al., 2000). Empowerment is

essential both to the movement toward such recovery-oriented groups and their success (Larson

& Corrigan, 2008; Rogers, Ralph, & Salzer, 2010). SHMA support groups utilize activities that

15
are said to increase individuals’ (e.g., family members’) sense of empowerment, such as

“involvement with others, increased responsibility, and organizational problem solving”

(Zimmerman & Rappaport, 1988, p.726). In addition, public anti-stigma programs within SHMA

support groups have been found to enhance personal empowerment and self-esteem in

individuals with chronic psychiatric conditions and their family members while developing and

utilizing stigma coping skills (Schulze & Angermeyer, 2003).

In SHMA support groups, the process of reciprocal receiving and providing support sets

the stage for reducing family members’ affiliate stigma while increasing their sense of

empowerment. Social and emotional support have been suggested to be necessary to reduce

individual’s perceived (Chou et al., 2009) and internalized stigma (Middlebrook, 2006);

furthermore, support from friends and significant others, rather than from family or

professionals, has been found to reduce affiliate stigma (Mak & Kwok, 2010). When a family

member receives support from other family members in a SHMA support group, stigma, guilt,

and isolation are attenuated and coping skills are learned; on the other hand, when a family

member provides support to other family members, self-worth, self-efficacy, and feelings of

purpose are enhanced (Heller, Roccoforte, Hsieh, Cook, & Pickett, 1997).

“A person who has become passive and helpless in the face of defeating experiences can

be gradually transformed into a valuable resource by involvement with the empowering

energy of a successful self-help group.” (Battaglino, 1987, p. 46)

Positive group identity is another way that affiliate stigma is lessened and personal

empowerment enhanced in SHMA support groups. Positive group identity has been found to

influence self-stigma by countering negative internalized self-statements (Larson & Corrigan,

2008; Corrigan, Larson et al., 2009), fostering the development of positive self-perceptions

16
(Frable, Wortman, & Joseph, 1997; Porter & Washington, 1993), and acting as a “buffer against

the threat of social rejection that discrimination represents” (Jetten et al., 2001, p. 1205). Such

changes, especially in cognitions, lessen the likelihood that decreases in self-efficacy and self-

esteem will occur (Corrigan, Larson et al., 2009). In addition, those who strongly identify with

their stigmatized group have been found to feel more empowered than those who do not

(Corrigan & Watson, 2002), and such empowerment is said to then diminish self-stigma (or

affiliate stigma, in this case; Jetten et al., 2001).

Nevertheless, more research is needed regarding efficacy of programs and interventions

for family members of individuals with chronic psychiatric conditions, particularly SHMA

support groups (Gray et al., 2009). With few exceptions (see Hazel et al., 2004), little empirical

evidence or systematic research describes objective outcomes of such programs (Rogers et al.,

2007); however, some studies reveal important findings regarding outcomes for individuals who

utilize consumer-operated services, such as or similar to SHMA support groups. For example,

empowerment-ideology based services, such as SHMA support groups, have been related to

improvements in subjective quality of life (Rosenfield, 1997). Peer support has been found to be

positively related to majority of the indices of empowerment and recovery (Corrigan, 2006).

Individuals who attend consumer-operated programs, in the form of peer support and mentoring,

education and advocacy, or drop-in, have been found to “[fare] better in their empowerment

outcomes” (i.e., self-reported empowerment) than those in traditional mental health services

(Rogers et al., 2007, p. 797; Rogers et al., 2010). At least ninety percent of family members who

participated in a study looking at consumer-operated family support groups perceived the

following benefits from being a part of their respective groups: better advocacy skills, better

emotional coping, better able to cope with stigma, knowing more information about treatments,

17
and feeling less isolated (Heller et al., 1997). These skills are both empowering and reduce the

pernicious effects of affiliate stigma.

Exemplar of a SHMA Group: The National Alliance on Mental Illness (NAMI)

Self-help/mutual aid (SHMA) support groups aim to reduce both public and family

stigma related to chronic psychiatric conditions; they also strive to foster personal empowerment

(Rogers et al., 2007), which ameliorates the effects of self-stigmatization.

A group of family members of individuals with chronic psychiatric conditions coalesced

in Madison, Wisconsin in 1979 with the commonality of feelings of dissatisfaction,

disappointment, anger, and even mistrust of professional mental health efforts (Howe & Howe,

1987; Wahl & Harman, 1989). They felt they were treated poorly by mental health professionals

(Wahl & Harman, 1989). This meeting was the conception of the Alliance for the Mentally Ill

(Howe & Howe, 1987). A year later, the grassroots SHMA support reached national, tax-exempt

status (and was originally called the National Alliance for the Mentally Ill; Howe & Howe,

1987). The National Alliance on Mental Illness (NAMI) currently operates at local, state, and

national levels and consists of more than 12,000 local affiliates spanning all fifty states,

Washington, D.C., and Puerto Rico. It is “America's largest grassroots mental health

organization dedicated to improving the lives of individuals and families affected by mental

illness” (http://www.nami.org/) by offering hope, reform, and health through education, support,

and advocacy efforts. Its message to the public is that chronic psychiatric conditions is a medical

problem, no one’s fault, and that treatment works. NAMI ensures that individuals with chronic

psychiatric conditions and their family members are heard—by the public, by health care

providers, and by policy makers (Wittwer, 2006). Its advocacy has resulted in family members

being able to be more involved in their relative’s treatment (Corrigan et al., 2006).

18
 Research based on self-report has shown perceived benefits from participating in NAMI.

Participants in NAMI’s family support groups, for example, have reported increased knowledge

about chronic psychiatric conditions and improved coping and problem-solving abilities related

to their relative with chronic psychiatric conditions (Norton, Wandersman, & Goldman, 1993).

Furthermore, active group members have shown increases in self-reported empowerment (e.g.,

they felt more helpful, responsible, and knowledgeable about chronic psychiatric conditions;

Norton et al., 1993). In another study, more than half of family members felt that NAMI family

support groups benefited them “a great deal” in the following areas: “[knowing] how to better

advocate for [their] relative, [feeling] better able to emotionally cope, [having] more information

about latest interventions, [having] more information about services for people with MI, [having]

new skills to deal with [their] relative, [having] more knowledge about mental illness, [feeling]

less like [they are] the only [ones] coping with a relative with mental illness, [and feeling] better

able to cope with stigma” (Citron, Solomon, & Draine, 1999, p. 23). These outcomes are in line

with a previous study that showed that NAMI has been helpful in aiding families deal with

stigma (Wahl & Harman, 1989).

Stigma is possibly the most pervasive barrier to NAMI’s goal of recovery (Howe &

Howe, 1987; Wittwer, 2006), and combating stigma is one of NAMI’s top priorities (Flynn,

1987). NAMI provides information on its website aimed at reducing public stigma as well as

education, training, and peer-support programs through its affiliates (e.g., Family to Family

Education, Peer to Peer, Basics, Provider Education, Parents and Teachers as Allies, Connection,

Family Support Group, In Our Own Voice, Hearts & Minds). These education and contact

programs are aimed at different audiences in regard to stigma. For instance, the Family to Family

Education program supports family members in their struggles with family stigma; the Provider

19
Education Program aims to reduce mental health providers’ public stigma (Larson & Corrigan,

2008).

Purpose of Current Study

Stigma related to chronic psychiatric conditions affects individuals with chronic

psychiatric conditions and their family members in a multitude of potentially destructive ways. A

large amount of research has been conducted to better understand these stigmatized groups’

subjective and objective experiences of stigma as well as to find ways to strategically combat

public stigma. Less research has focused on strategies aimed at reducing internalized stigma

(e.g., affiliate stigma). Enhancing personal empowerment is one way to achieve this goal. Other

methods (e.g., group identification, self-disclosure) have also been suggested as ways to reduce

internalized stigma. Many of these strategies are implemented in grassroots SHMA groups, such

as NAMI. An important first step in ascertaining if such groups would be beneficial—and why—

is to determine if stigma, empowerment, and other health/mental health variables differ among

those individuals who participate in such groups compared to those individuals who do not as

well as to establish whether the variables relate to one another in predicted ways.

The purpose of the current study is to determine if affiliate stigma and perceived family

stigma in family members of individuals with chronic psychiatric conditions will be lower—and

whether their adjustment and functioning is better—if they participate in NAMI, when compared

to family members who do not. Finally, our study aims to examine how stigma and

empowerment relate to adjustment and functioning among family members of individuals with

chronic psychiatric conditions.

NAMI provides a naturalistic setting to explore both personal empowerment and stigma,

especially family and affiliate stigma which have been largely neglected in the literature;

20
findings in such a setting would seemingly have high ecological validity. NAMI strives to

increase personal empowerment in individuals with chronic psychiatric conditions and their

family members and decrease public stigma; however, empirical data supporting its effectiveness

is limited (Otey & Fenton, 2004; Corrigan, 2006; Ostman & Kjellin, 2002).

Hypotheses. We had four primary hypotheses. Hypothesis 1 was that family members

who participate in NAMI would have lower levels of affiliate stigma (i.e., affective, behavioral,

cognitive), perceived family stigma, and depression, whereas they would have higher levels of

personal empowerment and quality of life (i.e., mental, physical) compared to family members

who do not participate in NAMI. Hypothesis 2 was that family members’ personal empowerment

would be significantly negatively correlated with affiliate stigma (i.e., affective, behavioral,

cognitive) and perceived family stigma. Hypothesis 3 was that family members’ levels of

affiliate stigma (i.e., affective, behavioral, cognitive) as well as their perceived family stigma

would be significantly positively related to depression and significantly negatively related to

quality of life (i.e., mental, physical). Hypothesis 4 was that family members’ levels of personal

empowerment would be significantly negatively related to depression and significantly positively

related to quality of life (i.e., mental, physical).

21
 CHAPTER TWO: METHOD

Participants

A total of 102 family members of individuals with chronic psychiatric conditions

participated in the current study. Participants were recruited into one of two groups: (1) those

associated with NAMI (n = 37) and (2) those not associated with NAMI (n = 65). Descriptives of

the sample (by group and total sample) are presented in Table 1. The overall sample of family

members was predominantly female (87.1% ), White (89.0%), and non-Hispanic (95.1%).

Although there was a range of educational levels, most family members reported having some

college (approximately 91%). The average age of participants across the sample was 44.79 years

(SD = 13.89).

Measures

Demographic questionnaire. The demographic questionnaire included questions

regarding gender, age, ethnicity, race, and education. It asked if the family member lives with his

or her relative with chronic psychiatric conditions, whether he or she participates in NAMI, how

long he or she has participated in NAMI, some questions about how frequently they attend

meetings, etc., and other specific questions about participation in education and support

programs offered by NAMI. The questionnaire asked questions regarding the family member’s

relative with chronic psychiatric conditions, how frequently they talk with their family member’s

care providers, and how much they are included in their family member’s care (including the

relative’s diagnosis and duration of chronic psychiatric conditions).

Affiliate stigma. Affiliate stigma was measured using the 22-item Affiliate Stigma Scale

(Mak & Cheung, 2008). This scale has three dimensions—affective, cognitive, and behavioral.

Participants rated each of 22 statements (e.g., ‘I worry if other people would know I have a

22
family member with mental illness’) on a Likert scale of 1 (strongly disagree) to 4 (strongly

agree). Mean scores for each of the scales and the total scale were used (previous Cronbach’s

alpha for total scale = .94; Mak & Cheung, 2009), with higher scores indicative of higher levels

of affiliate stigma. Cronbach’s alpha within the current sample was .93 for the total scale,

demonstrating excellent internal consistency. The subscales also showed good internal

consistency (Cronbach’s alphas ranging from .78 to .84).

Perceived family stigma. Perceived family stigma was measured using the seven-item

Devaluation of Consumer Families Scale (Struening et al., 2001). This scale has three factors—

community rejection, causal attribution, and uncaring parents. Participants rated each of seven

statements (e.g., ‘Most people look down on families that have a member who is mentally ill’)

on a Likert scale of 1 (strongly disagree) to 4 (strongly agree). Summed ratings yield a total

stigma score, which previous research has shown to be highly internal consistent (Cronbach’s

alpha = .80; Struening et al., 2001), with higher scores indicative of greater perceived family

stigma. Cronbach’s alpha within the current sample was .79, demonstrating excellent internal

consistency.

Personal empowerment. Personal empowerment was measured using the eight-item

Empowerment subscale of the Family Member Questionnaire (Dixon et al., 2004). Participants

rated each of eight statements (e.g., ‘I am sure there is a way to solve problems when they come

up.’) on a Likert scale of 1 (strongly disagree) to 4 (strongly agree). An average empowerment

score has been previously shown to be internally consistent (Cronbach’s alpha = .71; Dixon et

al., 2004), with higher scores indicative of a greater sense of empowerment. Cronbach’s alpha

within the current sample was .73, demonstrating good internal consistency.

23
 Depression. Depressive symptoms were measured using the 9-item Patient Health

Questionnaire (PHQ-9; Pfeizer), which is the depression module from the full PHQ. Items

inquire about the presence and frequency of various depressive criteria (e.g., anhedonia,

depressed mood, energy level, appetite, concentration) and suicidality over the course of the past

2 weeks. Frequency is assessed using a 4-point Likert scale of 0 (“Not at all”), 1 (“Several

days”), 2 (“More than half the days”), and 3 (“Nearly every day”). As such, the scale is a

measure of severity, and total scores range from 0 to 27 (i.e., each of 9 items rated from 0 to 3).

Higher scores indicate increased severity of depressive symptoms (5, mild; 10, moderate; 15,

moderately severe; 20, severe; Kroenke, Spitzer, & Williams, 2001). Cronbach’s alpha within

the current sample was .90, demonstrating excellent internal consistency.

Whereas the scale is typically used as a diagnostic tool for major depressive disorder (i.e.,

five or more of nine items must be present more than half the days with at least one of the

symptoms being depressed mood or anhedonia), it was used as a continuous, dimensional

measure in the current study to examine the presence and severity of depressive symptoms.

Quality of life. Mental and physical functioning and overall health-related quality of life

were measured using the 12-item Medical Outcomes Study Short-Form, Version 2 (SF-12v2).

Items on the SF12v2 are used to comprise eight subscales (Bodily Pain, General Health, Vitality,

Social Functioning, Physical Functioning, Mental Health, Role Physical, and Role Emotional)

and two component summary scores (Mental and Physical). Four of the subscales are made up of

one item (Bodily Pain, General Health, Vitality, and Social Functioning), and the other four are

made up of two items (Physical Functioning, Mental Health, Role Physical, and Role

Emotional). The original authors’ scoring method was utilized to calculate each of the

component summary scores using z-scores of the eight subscales (Ware, Kosinski, & Keller,

24
1996). The scores are norm-based within the US population (M = 50; SD = 10), with higher

scores are indicative of better health (Ware et al., 1996; Ware, Kosinski, Turner-Bowker, &

Gandek, 2002). Cronbach’s alpha within the current sample was .90 for mental quality of life and

.89 for physical quality of life, demonstrating excellent internal consistency.

Procedure

Participants were recruited into one of two groups: (1) those associated with NAMI (i.e.,

through NAMI affiliates, websites, and listservs) and (2) those who are not associated with

NAMI (i.e., through newspaper or other public announcements). The study consisted of one

online session, in which participants complete the measures described above.

Family members of individuals with chronic psychiatric conditions who consented to

participate in the study were given the link to the study and instructions regarding how to

proceed. At the site, they registered to enroll in the study. After registering, they completed the

demographics questionnaire. No identifying information was collected on this form. Participants

were then asked to complete the self-report measures of family stigma, personal empowerment,

depression, and quality of life. Total time to complete the study was approximately 30 minutes.

25
 CHAPTER THREE: RESULTS

Data Management

Descriptive statistics for the variables of interest are found in Table 2. Prior to data

analyses to test hypotheses, all data were examined descriptively to screen for any irregularities

or significant outliers (e.g., skewness, kurtosis). Negative skew was found on one variable—

Quality of Life, Physical (skewness = -1.36)—but was not viewed as problematic as the sample

being assessed was not one with physical impairment and so the mode scores would tend to be

high. No other significant skew was noted and there were no outliers for any of the variables;

therefore, no transformations of data were conducted. Cronbach’s alpha coefficients were

calculated to ensure internal consistency of measures (Table 2). All internal consistencies were

considered good to excellent using the measure scoring as intended and, therefore, no items were

excluded.

Preliminary Analyses

Correlations among variables of interest. Intercorrelations of variables of interest are

found in Table 3. These results indicated that the three affiliate stigma scales were significantly

positively related with each other and with the total scale. Likewise, perceived family stigma was

significantly positively related with all affiliate stigma scales. Whereas personal empowerment

was significantly negatively related to all affiliate stigma scales, the negative relation between

personal empowerment and perceived family stigma was not significant. Depression was

significantly positively related to the cognitive component of affiliate stigma as well as perceived

family stigma. The negative relation between personal empowerment and depression was

marginally significant. Mental and physical quality of life were slightly negatively correlated

(marginally significant), with mental quality of life significantly negatively relating to both the

26
cognitive component of affiliate stigma as well as depression. Personal empowerment was

positively related to mental quality of life (significantly) and physical quality of life (marginally).

Potential covariates. Age and gender were correlated with the variables of interest,

including NAMI participation, to determine if either demographic should be used as a covariate

in subsequent analyses testing hypotheses (Table 4). Examination of these variables as possible

covariates was important given that gender has been linked to caregiver distress among family

members of individuals with chronic psychiatric conditions (Mulud & McCarthy, 2017), with

males faring worse (Souza et al., 2017), and that worse outcomes have been noted among

younger family members (Souza et al., 2017).

No significant relations with gender were found. However, age was significantly

correlated with mental quality of life, r = .22, p = .03, indicating older individuals had a better

mental quality of life. Age was also significantly correlated with physical quality of life, r = -.30,

p = .003, indicating that younger individuals had a better physical quality of life. Age was also

significantly positively correlated with NAMI participation (which was scored as 1 =

participation and 0= no participation), r = .35, p < .001, indicating that individuals participating

in NAMI were older than individuals who did not. Given these results, it was determined that age

would be used as a covariate when testing Hypothesis 1, which examined differences based on

NAMI participation. No covariates were indicated or used for Hypotheses 2. For hypotheses 3

and 4, zero-order correlations were examined. In addition, follow-up partial correlations

covarying for age were used when analyses included one of the quality of life variables.

Tests of Hypotheses

Hypothesis 1. NAMI participation as related to stigma, depression, personal

empowerment, and quality of life. NAMI participation was dichotomized into the two groups

27
using dummy coding: those who had no involvement with NAMI = 0 and those who participated

in NAMI = 1. Independent samples t-tests were conducted to compare both groups’

aforementioned variables and found no significant differences based on NAMI participation

(Table 5). Family members who participated in NAMI did not differ from those who did not

participate in NAMI on total affiliate stigma, t(100) = 0.48, p = .63; the affective component of

affiliate stigma, t(100) = -0.25, p = .80; the behavioral component of affiliate stigma, t(100) =

1.18, p = .24; the cognitive component of affiliate stigma, t(100) = 0.10, p = .92; perceived

family stigma, t(100) = -1.53, p = .13; personal empowerment, t(100) = -1.00, p = .32;

depression, t(100) = 0.64, p = .53; mental quality of life, t(100) = -0.68, p = .50; and physical

quality of life, t(100) = -0.45, p = .66.

Notably, the two groups (NAMI and non-NAMI) had unequal standard deviations and the

test for homogeneity of variance was significant, thus violating the assumption of homogeneity

of variance. Although t-tests are relatively robust against that violation, unequal samples sizes

between groups exacerbate the problem when homogeneity of variance cannot be assumed such

that even the Welch’s correction does not always yield a valid probability (Keppel, 1993). Under

those circumstances, it is recommended that a random sample from the larger group be taken to

match the smaller group, with the reduction in power being offset by the increase in accuracy in

the statistics estimated (Keppel, 1993). Therefore, random sampling from the non-NAMI group

was conducted to form a random sample of 37 participants in the non-NAMI group to match the

larger NAMI group.

Independent samples t-tests were re-conducted comparing the NAMI group to the

random sample of the non-NAMI group (i.e., comparing equivalent groups; Table 6). Again,

family members who participated in NAMI did not differ from those who did not participate in

28
NAMI for most variables. However, two significant group differences and a trend were detected.

Specifically, family members who participated in NAMI had lower scores on the behavioral

component of affiliate stigma (M = 2.03, SD = 0.58) than those who did not participate in NAMI

(M = 2.33, SD = 0.58), t(100) = 2.24, p = .03. Family member NAMI participants also had higher

levels of personal empowerment (M = 2.94, SD = 0.42) than family members who did not

participate, (M = 2.71, SD = 0.46), t(100) = -2.26, p = .03. Finally, there was a trend toward

lower total affiliate stigma scores among family members who participated in NAMI (M = 2.32,

SD = 0.48) compared to those who did not, (M = 2.52, SD = 0.50), t(100) = 1.70, p = .09.

Finally, Hypothesis 1 was tested using a number of analyses of covariance (ANCOVA),

covarying for age, given that age differed across NAMI participation (Table 7). For the

ANCOVAs, three participants were excluded (from the non-NAMI group) due to not reporting

age. Affiliate stigma, perceived family stigma, personal empowerment, depression, and quality

of life were used as dependent variables (and age was used as a covariate). As with the initial

independent samples t-tests, none of the differences between the NAMI and non-NAMI groups

were significant: When covarying for age, family members who participated in NAMI did not

differ from those who did not participate in NAMI on total affiliate stigma, F(1,98) = 1.25, p =

.15; the affective component of affiliate stigma, F(1,98) = 1.99, p = .16; the behavioral

component of affiliate stigma, F(1,98) = 1.31, p = .26; the cognitive component of affiliate

stigma, F(1,98) = 2.12, p = .15; perceived family stigma, F(1,98) = 2.66, p = .11; personal

empowerment, F(1,98) = 0.24, p = .62; depression, F(1,98) = 0.52, p = .47; mental quality of life,

F(1,98) = 0.06, p = .81; and physical quality of life, F(1,98) = 0.93, p = .34.

Hypothesis 2. Family members’ personal empowerment as related to stigma. To test

Hypothesis 2, personal empowerment was correlated with affiliate stigma (i.e., total, affective,

29
behavioral, cognitive) as well as perceived family stigma (Table 8). Personal empowerment was

significantly negatively correlated with total affiliate stigma was r = -.46, p < .001; the affective

component of affiliate stigma, r = -.33, p = .001; the behavioral component of affiliate stigma, r

= -.45, p < .001; and the cognitive component of affiliate stigma, r = -.47, p < .001. However,

personal empowerment was not significantly correlated with perceived family stigma, r = -.15, p

= .14.

Hypothesis 3. Family members’ stigma as related to depression and quality of life. To

test Hypothesis 3, depression and quality of life (mental and physical) were correlated with

affiliate stigma (i.e., total, affective, behavioral, cognitive) as well as perceived family stigma

(Table 9). Depression was significantly positively correlated with the cognitive component of

affiliate stigma, r = .24, p = .01, as well as perceived family stigma, r = .22, p = .02. The

cognitive component of affiliate stigma was also significantly negatively correlated with mental

quality of life, r = -.21, p =.03. None of the other examined correlations were significant. In

addition, partial correlations were conducted for the analyses examining quality of life,

covarying for age. The partial correlations examining stigma’s relation to mental and physical

quality of life accounting for age followed the same pattern as the zero-order correlations. Again,

only the cognitive component of affiliate stigma was significantly negatively correlated with

mental quality of life, pr = -.25, p =.01.

Hypothesis 4. Family members’ personal empowerment as related to depression and

quality of life. To test Hypothesis 4, personal empowerment was correlated with depression and

quality of life (mental and physical; Table 10). Personal empowerment was negatively

correlated with depression, r = -.19, p = .05, whereas it was significantly positively correlated

with mental quality of life, r = .25, p = .01. The positive correlation between personal

30
empowerment and physical quality of life was marginally significant, r = .17, p = .08. In

addition, partial correlations were conducted for the analyses examining quality of life,

covarying for age. The partial correlations examining empowerment’s relation to mental and

physical quality of life accounting for age generally followed the same pattern as the zero-order

correlations. Empowerment was significantly positively correlated with mental quality of life, pr

= .28, p =.01. However, once accounting for the age, the marginal correlation between

empowerment and physical quality of life was no longer significant, pr = .14, p =.17.

Post-hoc analyses. A number of theoretically-relevant post-hoc analyses were conducted

(although not hypothesized a priori) to determine if the relations between NAMI participation

and adjustment (depression and quality of life) were mediated by increased empowerment or

decreased affiliate stigma (particularly the behavioral component), given that these constructs

differed in the equivalent NAMI groups. However, mediation was not supported. Likewise, post-

hoc moderated multiple regression analyses were conducted to determine if empowerment

moderated (i.e., attenuated) the relation between affiliate stigma and adjustment (depression and

quality of life). Again, none of these analyses were significant and, therefore, are not reported.

31
 CHAPTER FOUR: DISCUSSION

Support for Hypotheses and Theoretical Implications

The first hypothesis—that family members who participate in NAMI would have lower

levels of affiliate stigma (i.e., affective behavioral, cognitive), perceived family stigma, and

depression, whereas they would have higher levels of personal empowerment and quality of life

(i.e., mental, physical) compared to family members who do not participate in NAMI—was not

supported when examining group differences within the full sample, including when accounting

for age. However, when random sampling from the non-NAMI group to create equivalent groups

was conducted, a few significant differences did emerge. Specifically, NAMI participants had

higher empowerment and lower levels of the behavioral component of affiliate stigma. Given the

number of group differences examined, however, these findings should be interpreted with

caution as it may be due to Type I error, particularly given that the differences did not emerge

when examining across the full sample.

The overall lack of differences between the NAMI and non-NAMI groups conceivably

could be due to one of the major limitations of our study—we do not know the extent of family

members’ NAMI participation. They may have attended one meeting and joined the

organization, they may have attended occasional meetings, they may have attended every weekly

meeting, or they may have attended every meeting plus taught NAMI-based courses. Although

an item was included on the demographic questionnaire that asked for level of participation,

most participants did not answer the item. Variations on variables of interest based on “dosage”

of NAMI participation could not be evaluated.

Another question that arises is whether those individuals who are part of the SHMA

groups are more open to expressing or reporting emotional/behavioral/cognitive symptoms than

32
those who are not. Indeed, given our study design, it is not known whether individuals who are

part of SHMA groups are more depressed and less empowered initially, which may be one of

their motivations for joining such a group. If that is the case, it could have masked any

improvements that these individuals made due to their experience in the SHMA groups, as we

did not have information about their personal change from before and after participation was

initiated. Similarly, it is not known to what extent that those individuals who are not a part of

these groups are less likely to report depressive or other negative symptoms; perhaps they have

less need for outside support or perhaps they may experience more shamefulness in speaking

about it or reporting on it. Again, without pre- and post-data about within group change based on

involvement with NAMI (or not), it is not possible to tease these issues apart.

Results generally supported the second hypothesis in that family members’ personal

empowerment was significantly negatively correlated with affiliate stigma (including affective,

behavioral, and cognitive); however, there was not a significant relation with perceived family

stigma. In hindsight, however, the second part of this hypothesis may have been initially flawed,

because personal empowerment itself technically should not be related to perception of family

stigma. A person who is empowered or disempowered might easily perceive the same level of

stigma. However, a family member’s reaction to such stigma (the first part of the hypothesis as it

relates to affiliate stigma) would likely differ, and those with less personal empowerment would

be more likely to internalize the stigma because they are lacking this critical protective factor.

This supports others (e.g., Larson & Corrigan, 2008; Rogers et al., 1997) who have demonstrated

that personal empowerment serves as a buffer for (or reduces) the internalization of family

stigma. An important question that remains and that cannot be fully answered by the current

33
study’s design is: Is self-reported internalized/affiliate family stigma less reported due to the

stigma itself as to show strength and solidarity?

The third hypothesis was partially supported regarding depression and affiliate stigma as

well as depression and quality of life. Family members’ level of depression was indeed

significantly positively correlated with both the cognitive component of affiliate stigma and

perceived family stigma. It did not relate to the affective and behavioral components of affiliate

stigma. The relation of depression and affiliate stigma is likely bidirectional. If a person has a

heightened awareness of and has cognitively internalized their victimization, it makes sense that

they would become depressed or more depressed. Furthermore, those whom are depressed often

have weakened coping strategies/buffers, such as empowerment, to prevent them from focusing

on and cognitively internalizing family stigma. That said, it is unclear as to why the affective or

behavioral components of affiliate stigma were not related to depression.

When examining affiliate stigma and perceived family stigma as they relate to quality of

life, only the cognitive component of affiliate stigma was significantly correlated with mental

quality of life, but it did not relate to physical quality of life. It is possible that the more restricted

range in physical quality of life (i.e., negative skew) made finding the relation to other variables

more difficult. None of the other stigma variables related to quality of life. Although the one

significant finding may have been Type I error, there is a strong theoretical rationale to expect

that when individuals internalize stigma cognitively about themselves, they may also experience

a poorer mental quality of life, as the cognitive components of affiliate stigma include negative

self-evaluations, poor self-esteem, and suicidal thoughts. Although theoretically, affiliate stigma

would be the precedent, this relation may also be bidirectional. Unfortunately, the method of the

current study (i.e., data collected at one time point) precludes being able to tease the potential

34
bidirectionality apart. However, of note, previous research has shown that the impact of

caregiving predicts depression—even controlling for Time 1 depression—whereas the reverse

(i.e., depression predicting impact) was not supported (Perlick et al., 2016).

The fourth and final hypothesis that personal empowerment would be related to

depression and quality of life was predominantly supported. Consistent with previous literature

(e.g., Perlick et al., 2016), family members with more empowerment were less depressed and had

significantly better mental quality of life. They also had more positive physical quality of life,

but that finding was marginal. As previously noted, it is not clear whether this bidirectional or

whether better overall mental health functioning leads family members to feel more empowered.

Nevertheless, these significant relations are promising.

Limitations of the Current Study

The current study had a number of limitations that should be considered. First, the study

was cross-sectional, rather than longitudinal. As such, we could only examine group differences

(NAMI versus non-NAMI) but could not evaluate within group change that may have occurred

from participating in NAMI (or not). Relatedly, there was no way to determine if those who

opted to participate in NAMI experienced more negative symptoms (i.e., stigma, depression) and

lower positive symptoms (i.e., empowerment, quality of life) initially, which was perhaps their

motivation to seek out involvement in NAMI.

Second, our participants were self-selected into the study, which leads to a risk of self-

selection bias. Whereas there may be many advantages to collecting data using the internet

(Rhodes, Bowie, & Hergenrather, 2003), using an online self-selection recruitment procedure

needs to be interpreted with caution (Khazal et al., 2014) This caution is warranted, partially

based on the notion that the external validity of findings that are not based on probability

35
sampling is somewhat undermined (Bethlehem, 2010). It is impossible to know the number of

family members who did not participate because they had entirely abandoned their family

member with chronic psychiatric illness, the potential respondents who saw the recruitment

materials and chose not to participate for other reasons (Rhodes et al., 2003), or those who did

not have internet access (Bethlehem, 2010). Their lack of participation could potentially be

related to our variables of interest, including depression and empowerment or even fear of being

further stigmatized.

Third, the method is quasi-experimental in that NAMI participation was measured as

naturally occurring and groups were formed based on the participants’ report of that

participation. Participants were not randomly assigned to the “treatment” groups (NAMI versus

non-NAMI). Fourth, as previously mentioned, the extent of NAMI members’ participation was

not uniformly collected across the sample; therefore, it was not possible to determine if more or

longer involvement in NAMI (i.e., a higher dosage of the SHMA group) related to lower stigma

and depression as well as higher empowerment and better quality of life, even though

dichotomous group differences did not emerge.

Fifth, because the data collection relied solely on self-report, there could be error in the

data in that the family member may have been motivated to represent themselves as positively as

possible to lessen the stigma toward chronic psychiatric conditions. They may also have felt

guilty admitting shame or embarrassment regarding their family member who suffers from a

chronic psychiatric condition. Self-report measures are susceptible to positive impression

management or the social desirability bias; if this bias is present, findings will underestimate the

level of participants’ negative feelings regarding their family member and/or situation (Link et

al., 2004). At best, the self-report measures assessed the participants’ own perceptions of their

36
functioning across these variables, but that may vary from the true state of affairs. That said, self-

perception of functioning across the specific variables of interest in this study are important and

are often the way we evaluate and even diagnose mental health conditions clinically.

Future Directions

Future research examining the impact of SHMA groups would benefit from a

longitudinal design that evaluates a pre-test and post-test on the variables of interest so that

change both within and between groups can be determined, including examining the interaction

of time (pre- to post-) by treatment (SHMA versus non-SHMA). It would also be ideal to begin

with a group of family members who have had no SHMA involvement and randomly assign each

participant either to a SHMA group or not. Random assignment across a large enough sample

should ensure that other precipitating and individual difference factors are evenly distributed

across both groups so that any measured change is due to group assignment (i.e., SHMA versus

non-SHMA) rather than other variables, thus increasing the internal validity of the study. It also

helps to minimize the impact that potential confounds could have on the study results. If this

approach is used and it is determined that the SHMA group is beneficial, participants not initially

assigned to receive this experience could be offered participation in the group after the post-test

data are collected. It would also be important to track ongoing data across the study (between

pre- and post-test) regarding family members’ level and length of involvement in the SHMA

group for those who are assigned to that condition.

Studies further examining stigma and its relation to family members’ functioning should

consider the use of implicit measurement (Nosek, Banaji, & Greenwald, 2002) of affiliate

stigma. Not only would the literature benefit from further studies comparing implicit measures to

self-reported (i.e., explicit) affiliate stigma (e.g., Stier & Hinshaw, 2007; Teachman, Wilson, &

37
Komarovskaya, 2006) but also examining how individuals participating in SHMA groups may

differ on implicit measures of affiliate stigma would be informative. Another option would be

measuring visceral physiological reactions when asked the self-report questions regarding their

family members.

In addition to further survey or testing research as already described, the field also would

benefit from including laboratory research with interactive situations where study confederates

are stigmatizing family members based on the confederate’s presumed knowledge of the family

members illness. Such laboratory research could be made even more rich through the use of

actors and virtual reality, where scenarios could depict family members stigmatizing the actual

behavior of an ill family member. These more elaborate research designs would remove the

question regarding whether the stigmatization is perceived or real, as actual behavior of the

participants could be observed and coded.

Clinical Implications

General Implications. The relations among variables of interest in the current study

indicate that empowerment and affiliate stigma are inversely related and that empowerment is

related to better adjustment and functioning (i.e., lower depression, better quality of life,

particularly the mental component). Thus, any program that focuses on empowering family

members of individuals with chronic psychiatric conditions has promise for reducing stigma and

improving outcomes. Furthermore, the cognitive component of affiliate stigma relates to

depression (negatively) and mental quality of life (positively) and indicates that, in addition to

increasing empowerment, addressing particularly the negative thoughts associated with affiliate

stigma may be the most amenable and advantageous for these family members.

38
 Despite any overwhelming evidence in the current study to demonstrate that NAMI

participation impacts the variables under consideration, an examination among equal groups did

provide support for higher empowerment among the NAMI group. Perhaps empowerment—a

sense of gaining control (Battaglino, 1987; Corrigan, 2006), mastery (Rappaport, 1987), and

understanding (Zimmerman, 2000)—is one of the key benefits of SHMA groups. Given its clear

relation with other variables (stigma reduction, better adjustment and functioning), the role of

SHMA in improving the lives of family members of individuals with chronic psychiatric

conditions appears to be promising.

Possible Specific Implications: NAMI’s Family-to-Family Education Program

(FFEP). In 1991, a comprehensive family education and support program called “Journey of

Hope” was founded as a result of merging existing programs within two state chapters of NAMI

(i.e., Vermont’s family-to-family program and Louisiana’s peer family support group; Burland,

1998). In 1997, NAMI integrated the program (now known as the Family-to-Family Educational

Program; FFEP) into its ongoing educational programs; the FFEP involves a free twelve-week

course for family members of adults with chronic psychiatric conditions, which is led by trained

family member volunteers (co-leader pairs) of NAMI state affiliates (Burland, 1998). These well

trained co-leader pairs use a scripted manual to provide family members with information

regarding “mental illnesses, treatments and medication, and rehabilitation” as well as help family

members develop communication and problem-solving skills and better self-care (Dixon et al.,

2001). Self-reported family well-being has been the primary outcome in the evaluation of family

education programs (Dixon et al., 2001).

The founder/creator/developer of FFEP built the program around three primary

objectives: healing, consciousness-raising, and empowerment (Burland, 1998). Briefly, regarding

39
healing, the program is theoretically a trauma-and-recovery model of family recovery. It is a

secondary intervention—aimed at helping families cope with the calamity of chronic psychiatric

conditions. It does not blame the family for causing the illness nor suggest the family is

pathological and should be “treated.” As the program’s founder stated, “the final resolution of

healing in the trauma model involves placing a catastrophic personal event into a fuller life

perspective and using the experience to connect with others in a new and meaningful way”

(Burland, 1998, p. 40). Regarding consciousness-raising, the program exposes family members

to the concept of stigma and allows family members to see how stigma and discrimination have

likely impacted them and the way they perceive their affected family members. The primary

teaching goal of the FFEP is to allow family members to be able to identify and discard any

internalized misconceptions about mental illness learned through myths of society and see

mental illness as a “no fault” condition. “Consciousness-raising liberates the mind from negative

stereotypes and reveals what is manifestly unjust in the status quo” (Burland, 1998, p. 40). In

terms of empowerment, the FFEP program uses family education as a tool to build

empowerment and fuel advocacy efforts to decrease stigmatization and discrimination related to

mental illness. The FFEP’s “empowering call to action provides a significant way to express

these newfound strengths in pursuit of constructive social and political change” (Burland, 1998,

p.40).

The program uses public/family stigma-reducing techniques (e.g., education, protest),

increases empowerment (which should decrease affiliate stigma), and directly includes

information on stigma and its deleterious effects (such as negative outcomes, like depression and

quality of life). Thus, an examination of group differences between those who participate in the

FFEP program versus the broader approach of examining NAMI versus non-NAMI participation

40
may be more informative regarding how SHMA groups can benefit family members of chronic

psychiatric conditions in the areas of stigma and empowerment as well as related adjustment and

functioning, as was the focus of the current study. Indeed, studies that have looked at the efficacy

of the FFEP (e.g., Deal, 1997; Dixon et al., 2001, 2004; Lucksted, Stewart, & Forbes, 2008;

Mercado et al., 2016) have found some promising results, such as improvement on a self-report

measure of empowerment (Deal, 1997); improvements in assisting ill family members’ with their

symptoms, awareness of the mental health system, and knowledge about chronic psychiatric

conditions (Pickett, Cook, & Laris, 1997); increased empowerment (Mercado et al., 2016) and

self-care and decreased isolation and guilt (Burland, 1998; Dixon et al., 2001), some gains

showing maintenance at six months after the course was completed (Dixon et al., 2001). As

noted earlier, the current study attempted to collect information about participation in the FFEP

program among the NAMI group. However, due to a very large amount of missing data, group

differences related to FFEP could not be addressed. Further examination of the benefits of the

FFEP has much promise due to its clinical and theoretical connections to the stigma,

empowerment, and other outcomes.

Conclusions

Many individuals with chronic psychiatric conditions are often altogether abandoned by

their family members, perhaps due to the overwhelming effects of affiliate stigma. Ways to

decrease affiliate stigma and its consequences are necessary—to prevent such a negative

outcome from happening and for the health of family members as well as those with chronic

psychiatric conditions. Understanding the relation between affiliate stigma, empowerment,

depression, and quality of life help guide future research and interventions in this area.

Understanding that increased empowerment is related to decreased affiliate stigma, less

41
depression, and better mental quality of life underscores the need for more research leading to

tangible, and not only theoretical, ways to increase empowerment. Continued collaborative work

with NAMI and other SHMA groups is warranted, as previous research has identified many

ways in which they benefit both family members and individuals with chronic psychiatric

conditions.

42
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Table 1. Descriptives of the Sample (by Group and Total)

NAMI (n = 37) Non-NAMI (n = 65) Full Sample (N = 102)

M (SD) M (SD) M (SD)
Age 50.97 (13.28) 41.10 (12.99) 44.79 (13.89)
n (%) n (%) n (%)
Gender
Male 3 (8.1) 10 (15.6) 13 (12.9)
Female 34 (91.9) 54 (84.4) 88 (87.1)

Race
American Indian or Alaska Native 3 (8.1) 0 (0.0) 3 (3.0)
Asian 0 (0.0) 4 (6.3) 4 (4.0)
Black or African American 1 (2.7) 3 (4.8) 4 (4.0)
Native Hawaiian/Other Pacific Islander 0 (0.0) 0 (0.0) 0 (0.0)
White 33 (89.2) 56 (88.9) 89 (89.0)

Ethnicity

59
Hispanic or Latino 0 (0.0) 5 (7.7) 5 (4.9)
Not Hispanic or Latino 37 (100.0) 60 (92.3) 97 (95.1)

Highest Educational Attainment

Less than high school diploma 0 (0.0) 3 (4.6) 3 (2.9)
High school 0 (0.0) 6 (9.2) 6 (5.9)
Some college 10 (35.1) 19 (29.2) 29 (28.4)
Bachelor’s degree 13 (35.1) 21 (32.3) 34 (33.3)
Master’s degree 10 (27.0) 13 (20.0) 23 (22.5)
Doctoral degree 4 (10.8) 3 (4.6) 7 (6.9)

Note. NAMI = National Alliance on Mental Illness; M = mean; SD = standard deviation. Three non-NAMI participants did not report
age; therefore, the sample size is 62 for the non-NAMI group and 99 for the total for the age statistics.
Table 2. Descriptives of Variables of Interest

M SD Potential Actual Skew Kurtosis Cronbach’s

Range Range Alpha

Affiliate Stigma, Total 2.36 0.56 1-4 1.00-3.68 -0.07 -0.05 .93

Affiliate Stigma, Affective 2.81 0.57 1-4 1.00-4.00 -0.85 1.25 .78

Affiliate Stigma, Behavioral 2.13 0.65 1-4 1.00-3.63 0.19 -0.62 .84

Affiliate Stigma, Cognitive 2.16 0.62 1-4 1.00-4.00 0.39 -0.08 .83

60
Perceived Family Stigma 18.08 3.54 1-28 7.00-26.00 -0.52 0.85 .79

Personal Empowerment 2.88 0.47 1-4 1.25-4.00 -0.34 0.98 .73

Depression 8.35 6.77 0-27 .00-25.00 0.69 -0.37 .90

Quality of Life, Mental 38.99 13.35 1-100 1.35-64.19 -0.37 -0.44 .90

Quality of Life, Physical 50.19 12.12 1-100 9.16-70.50 -1.36 1.71 .89

Note. M = mean; SD = standard deviation; affiliate stigma was measured using the Affiliate Stigma Scale, which provides a total score
comprised of affective, behavioral, and cognitive components; perceived family stigma was measured using the Devaluation of
Consumer Families Scale; personal empowerment was measured using the Empowerment subscale of the Family Member
Questionnaire; depression was measured using the PHQ-9; and mental and physical quality of life were measured by the SF-12v2;
negative skew for Quality of Life, Physical Negative skew was due to the mode being higher than the mean or median (not a
physically impaired group) and was not due to outliers.
Table 3. Intercorrelations of Variables of Interest

1. 2. 3. 4. 5. 6. 7. 8. 9.

1. Affiliate Stigma, Total ---

2. Affiliate Stigma, Affective .88*** ---

3. Affiliate Stigma, Behavioral .92*** .70*** ---

4. Affiliate Stigma, Cognitive .91*** .73*** .76*** ---

5. Perceived Family Stigma .49*** .41*** .39*** .53*** ---

61
6. Personal Empowerment -.46*** -.33** -.45*** -.47*** -.15 ---

7. Depression .11 .04 .02 .24* .22* -.19† ---

8. Quality of Life, Mental -.10 -.08 -.004 -.21* -.15 .25* -.81*** ---

9. Quality of Life, Physical .04 .13 -.02 .01 .004 .17† -.14 -.17† ---

†
trend, p < .10. p < .10. * p < .05. ** p < .01. *** p < .001.
Table 4. Zero-Order Correlations between Potential Covariates and Variables of Interest

Age Gender

Affiliate Stigma, Total .06 -.09

Affiliate Stigma, Affective .08 .09

Affiliate Stigma, Behavioral -.004 -.07

Affiliate Stigma, Cognitive .10 -.10

Perceived Family Stigma .06 -.09

Personal Empowerment -.04 -.01

Depression -.05 -.17

Quality of Life, Mental .22* .13

Quality of Life, Physical -.30** -.02

NAMI Participation .35*** -.11

Note. NAMI = National Alliance on Mental Illness; NAMI Participation is dichotomized as 1 =

participation and 0= no participation.
* p < .05. ** p < .01. *** p < .001.

62
Table 5. Independent Samples t-tests Examining Variables of Interest by NAMI Participation

(Hypothesis 1)

NAMI Non-NAMI
t(100) p
M (SD) M (SD)
(n = 37) (n = 65)

Affiliate Stigma, Total 2.32 (0.48) 2.38 (0.60) 0.48 .63

Affiliate Stigma, Affective 2.83 (0.50) 2.80 (0.61) -0.25 .80

Affiliate Stigma, Behavioral 2.03 (0.58) 2.19 (0.69) 1.18 .24

Affiliate Stigma, Cognitive 2.15 (0.52) 2.16 (0.67) 0.10 .92

Perceived Family Stigma 18.78 (3.22) 17.68 (3.67) -1.53 .13

Personal Empowerment 2.94 (0.42) 2.85 (0.49) -1.00 .32

Depression 7.78 (6.04) 8.67 (7.19) 0.64 .53

Quality of Life, Mental 40.18 (11.77) 38.31 (14.22) -0.68 .50

Quality of Life, Physical 50.90 (11.51) 49.78 (12.53) -0.45 .66

Note. M = mean; SD = standard deviation; NAMI = National Alliance on Mental Illness; NAMI
participation is dichotomized as 1 = NAMI (participation) and 0 = Non-NAMI (no participation).

63
Table 6. Independent Samples t-tests Examining Variables of Interest by NAMI Participation

Using Random Sampling for Equivalent Groups (Hypothesis 1)

NAMI Non-NAMI
t(72) p
M (SD) M (SD)
(n = 37) (n = 37)

Affiliate Stigma, Total 2.32 (0.48) 2.52 (0.50) 1.70 .09†

Affiliate Stigma, Affective 2.83 (0.50) 2.97 (0.46) 1.29 .20

Affiliate Stigma, Behavioral 2.03 (0.58) 2.33 (0.58) 2.24 .03*

Affiliate Stigma, Cognitive 2.15 (0.52) 2.27 (0.65) 0.85 .40

Perceived Family Stigma 18.78 (3.22) 17.76 (3.48) -1.32 .19

Personal Empowerment 2.94 (0.42) 2.71 (0.46) -2.26 .03*

Depression 7.78 (6.04) 8.76 (6.34) 0.68 .50

Quality of Life, Mental 40.18 (11.77) 38.43 (13.61) -0.59 .55

Quality of Life, Physical 50.91 (11.51) 50.55 (14.12) -0.12 .91

Note. M = mean; SD = standard deviation; NAMI = National Alliance on Mental Illness; NAMI
participation is dichotomized as 1 = NAMI (participation) and 0 = Non-NAMI (no participation).
†
trend, p < .10. * p < .05.

64
Table 7. Analysis of Covariance Examining Variables of Interest by NAMI Participation

(Hypothesis 1)

NAMI Non-NAMI F (1,98) p

M (SE) M (SE)
(n = 37) (n = 62)
Affiliate Stigma, Total 2.36 (0.10) 2.42 (0.07) 1.25 .15

Affiliate Stigma, Affective 2.86 (0.10) 2.84 (0.08) 1.99 .16

Affiliate Stigma, Behavioral 2.08 (0.12) 2.23 (0.09) 1.31 .26

Affiliate Stigma, Cognitive 2.18 (0.11) 2.20 (0.08) 2.12 .15

Perceived Family Stigma 19.05 (0.65) 17.72 (0.47) 2.66 .11

Personal Empowerment 2.94 (0.09) 2.83 (0.06) 0.24 .62

Depression 7.64 (1.19) 8.02 (0.87) 0.52 .47

Quality of Life, Mental 39.11 (2.38) 39.85 (1.73) 0.06 .81

Quality of Life, Physical 53.05 (1.98) 49.46 (1.44) 0.93 .34

Note. Marginal means are presented accounting for age in the model; three participants excluded
from non-NAMI group due to missing age; M = mean; SE = standard error; NAMI = National
Alliance on Mental Illness; NAMI participation is dichotomized as 1 = NAMI (participation) and
0 = Non-NAMI (no participation).

65
Table 8. Intercorrelations between Personal Empowerment and Stigma (Hypothesis 2)

Personal Empowerment
p
r(100)

Affiliate Stigma, Total -.46 <.001***

Affiliate Stigma, Affective -.33 .001**

Affiliate Stigma, Behavioral -.45 <.001***

Affiliate Stigma, -.47 <.001***

Perceived Family Stigma -.15 .14

** p < .01. *** p < .001.

66
Table 9. Intercorrelations among Stigma and Depression and Quality of Life (Hypothesis 3)

Depression Quality of Life, Quality of Life,

Mental Physical

r(100) p r(100) p r(100) p

Affiliate Stigma, Total .11 .28 -.10 .30 .04 .71

Affiliate Stigma, Affective .04 .67 -.08 .43 .13 .20

Affiliate Stigma, Behavioral .02 .87 -.004 .97 -.02 .84

Affiliate Stigma, Cognitive .24 .01* -.21 .03* .01 .90

Perceived Family Stigma .22 .02* -.15 .12 .004 .97

* p < .05.

67
Table 10. Intercorrelations between Personal Empowerment and Depression and Quality of Life

(Hypothesis 4)

Personal Empowerment
r(100) p

Depression -.19 .05*

Quality of Life, Mental .25 .01*

Quality of Life, Physical .17 .08†

†
trend, p < .10. p < .10. * p < .05.

68