Prevalence of mental illness in the US and worldwide

Mental illness is a pervasive health epidemic in the United States and worldwide.
According to results from the Substance Abuse and Mental Health Services Administrations
(SAMHSA) National Survey on Drug Use and Health: Mental Health Findings (2012), an
estimated 43.7 million adults in the U.S. had any mental illness (AMI) in the past 12 months,
which represents 18.6 percent of all adults in the country. AMI is defined as having at any time in
the past 12 months a diagnosable mental, behavioral, or emotional disorder (excluding
developmental and substance use disorders) of sufficient duration to meet diagnostic criteria
specified within the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV)
(SAMHSA, 2013). The same national survey estimates that there were an estimated 9.6 million
adults, representing 4.1 percent of the U.S. population, who have had in the past year or currently
have a Serious Mental Illness (SMI), which SAMHSA defines as a diagnosable mental,
behavioral, or emotional disorder (excluding developmental and substance use disorders) of
sufficient duration to meet diagnostic criteria specified within the DSM-IV that has resulted in
serious functional impairment, which substantially interferes with or limits one or more major
life activities (SAMHSA, 2013). The National Comorbidity Survey Replication (NCS-R)
estimates that the percentage of adults suffering from mental illness in a given year is even
higher, suggesting that approximately 26.2 percent of adults in the U.S., roughly 1 in 4 adults,
experience a diagnosable mental disorder (Kessler et al., 2005).
Prevalence of mental illness in parents
An analysis of the NCS data estimates that equal or greater percentages of adults
meeting criteria for [serious mental illness] in the previous 12 months are parents than are
individuals without psychiatric disorders (Nicholson, Biebel, Katz-Leavy, & Williams, 2002).

Moreover, of those individuals with a diagnosable serious mental illness in the past year, it is
estimated that 67.2 percent are mothers and 75.5 percent are fathers. Further, the prevalence of
parents among those with a diagnosable mental disorder is consistent across psychiatric
diagnostic categories. Specifically, according to the NCS sample, women and men who are
parents are estimated to represent over half of adults meeting the criteria for affective disorders,
anxiety disorders, posttraumatic stress disorders, and nonaffective psychosis. Importantly, on
average, parents (both mothers and fathers) meeting the criteria for affective disorder and
nonaffective psychosis have children several years prior to illness onset, whereas parents with
anxiety and post-traumatic disorder are more likely to experience illness onset prior to having
children.
Regardless of type of disorder, NCS data suggests that mothers with a lifetime prevalence
of psychiatric disorder have their first child in their early twenties, whereas fathers tend to have
their first child in their mid-twenties (Nicholson, Biebel, Katz-Leavy, & Williams, 2002).
Importantly, on average, mothers and fathers with a diagnosable psychiatric disorder have two
children. Ultimately, taken together, available data suggest that in the U.S., parenthood is more
common than not among mentally ill adults (mentally ill adults are statistically more likely to be
parents than not be parents), and that millions of children a year have a parent with a diagnosable
mental disorder. A study conducted by the Young Carers Research Group (YCRG) in London,
England, examined demographics of parents with a mental illness in a treatment program and
their dependent children who acted as primary caregivers. Results of this study revealed a stark
gender difference in that the majority of the parents sampled were mothers (87%) being cared for
by young daughters (92%) who were an average age of 12.
Add in literature from Bassani (diss literature, p. 26) about Canadian prevalence.

Affect of parental mental illness on children: Outcomes and attachments

Research overwhelmingly demonstrates that parental mental illness has profound
psychosocial effects on children, putting them at a significantly greater risk of experiencing
cognitive, emotional, and behavioral problems during childhood and throughout their lifetime
(Beardslee, 1993; Beardslee, Keller, Seifer, & Lavori, 1996; Somers, 2007). For instance,
empirical research has shown that children of mentally ill parents have higher rates of psychiatric
disorders in early and middle childhood than children of parents without a mental disorder
(Billings & Moos, 1983; Cowling, Luk, Mileshkin, & Birleson, 2004; Vandeleur, Rothen,
Gholam-Rezaee, Castelao, & Vidal, 2012) and are at a greater risk for pervasive emotional and
behavioral disturbance (Rutter & Quinton, 1984). A large body of research suggests that
attachment patterns are one of the major pathways through which parental mental illness affects
psychopathological and behavioral issues in children. For instance, children of mentally ill
parents have demonstrated insecure attachment and developmental issues from infancy
(DAngelo, 1986; Murray, Fiori-Cowley, Hooper, & Cooper, 1996) through early childhood and
adolescence (Cunningham, Harris, Vostanis, Oyebode, & Blissett, 2004; Sroufe, Egeland,
Carlson, & Collins, 2009). Add in explanation of research from Somers (diss literature, p. 4)
Bowlbys (1988) attachment theory has often been used to explain the connection
between parent mental illness and psychopathological, social, and behavioral outcomes in
offspring. Attachment theory examines the bond that is forms between a parent (traditionally the
mother) and a child during a childs developmental years, and argues that the patterns of
attachment that are established as early as infancy can have a profound affect on the offsprings
cognitive, social, and behavioral development, and most notably, his or her ability to develop
healthy and normal relationships over their lifetime. A 36-year longitudinal study of risk and

adaptation conducted by the Institute of Child Development at the University of Minnesota has
examined the relationship and patterns of interaction between mother and child starting in
infancy and continuing into young adulthood (Sroufe, Egeland, Carlson, & Collins, 2009).
Illuminated and driven by attachment theory, this research has revealed four different patterns of
attachment formed in early childhood. Securely attached children have healthy interaction
patterns with their mothers during period of separation by displaying some distress when the
mother leaves, but is able return to playing with toys during the separation, and then display
happiness when she returns. Anxiously attached children are very distressed by the absence of
their mother, are unable to play until she returns, and simultaneously seek out and reject her
when she comes back. Anxiously avoidant children seem unfazed in the absence of their mother
and appear very independent, but suffer physiological distress (high blood pressure and increased
heart rate) when she leaves and returns. Finally, disorganized attachment is characterized by
seemingly odd and contradictory reactions to a mothers return after absence. Children may cry
but move away from their mother, or show complete disinterest in her.
Importantly and expectedly, parenting style is the most significant predictor of attachment
pattern development. If a mother (or father) is in tune with their childs needs and consistently
and predictably comforts them, they are said to provide a secure base for their children,
enabling healthy development (Bowlby, 1988). However, when a mother or father is inconsistent
(alternating unpredictably between comforting and emotional unavailability and outright
rejection), is consistently and predictably unavailable or rejecting of their childs needs, or is
either completely neglectful or too intensely focused on them, the child may become insecurely
attached to their parent. Insecure attachment may be characterized by chronic distrust, anxiety,
uncertainty, and a lack of confidence in others (Nathiel, 2012).

Not surprisingly, longitudinal research has consistently revealed that attachment patterns
are enduring (although not entirely irreversible or resistant to change). As noted by Nathiel
(2012), young children of mothers with psychotic disorders are more likely to have insecure
attachments by the time theyre two, andin adulthood, more than half of the children of
mentally ill parent have either a mood disorder or a substance abuse problem (p. 10). In addition
to psychopathological and behavioral issues, these insecure attachments may manifest
relationally in adulthood. For instance, both longitudinal and reflective cross sectional in depth
interviews suggest that adult children of mentally ill parents continue to experience attachment
issues in adulthood, with a decreased likelihood of being able to maintain committed romantic
attachments and difficulty trusting others (Duncan & Browning, 2009; Mowbray, Bybee,
Oyserman, MacFarlane, & Bowersox, 2006). In her qualitative in depth interviews with 18
daughters of mentally ill mothers, Nathiel (2012) discovers a pervasive feeling of emptiness and
loss among the women that is rooted in their relationship (or non-relationship) with their mother,
but malignantly pervades their approach to relationships in adulthood. For instance, one
participant suggests, I didnt have a mom to go to when I was a kid, and I dont have it now. She
was there, but she wasnt there. Theres just emptiness (p. 172). Another participant suggests a
similar emptiness, explaining, I think Ive had to generate my own fuel. I never thought of it
that way before, but Ive never felt like Ive had anybody behind me. I feel like I started with an
empty tank (p. 173). Yet another woman demonstrates persistent insecure attachment forged in
her mothers mental illness when she says, The hardest thing I continue to deal with is having a
hard time believing things are going to be there when I need thempeople, other supports. If
theyre right in front of me, okay. If not, I cant count on themI detach from things before they
get out of control (p. 171). Although these interviews represent only a small sample of womens

experiences with their mothers mental illness, these accounts suggest the residual, and
potentially damaging affects of parental mental illness on a child.
In addition to experiencing enduring relational and attachment problems in adulthood, the
adult offspring of mentally ill parents are vulnerable to the development of other negative
psychosocial difficulties. For instance, research suggests that adult children of parents with a
mental disorder are more likely to experience lower self-esteem (Williams & Corrigan, 1992),
and greater social anxiety and adjustment issues than children and adolescents of parents without
mental illness (Jacob & Windle, 2000). Moreover, Weissman, Warner, Wickramaratne, Moreau,
and Olfson, (1997) discovered that adult children of mentally ill parents experience increased
marital and professional discord and lower overall functioning than adult children of parents
without a psychiatric diagnosis, while Neff (1994) found increased levels of alcohol consumption
among adult children of mentally ill parents. Mowbray, Bybee, Oyserman, MacFarlane, and
Bowersox (2006) interviewed mothers who had a serious mental illness and who had at least one
young adult child and found that mothers bipolar diagnosis was a strong predictor of a number
of adult child problems including drug use, alcohol abuse, legal trouble, and psychopathological
issues, and 54% of the offspring of the mothers sampled demonstrated a significant problem in
one or more of these domains
Childrens experiences with parental mental illness
Research has recently gone beyond identifying short-term and long-term outcomes of
growing up with a mentally ill parent to qualitatively exploring childrens experience with and
understanding of their parents mental illness. This body of research includes studies in child
psychology that examine how children make sense of and cope with their parents mental illness,

to studies soliciting reflective accounts of childhood experiences with a mentally ill parent from
adult children.
Mordoch and Hall (2008) applied symbolic interactionism as a lens to understand how
twenty-two children between the ages of six and sixteen made sense of and coped with living
with a parent who was diagnosed with schizophrenia, depression, or bipolar disorder. The study
used a mixed methods design to provide multiple avenues of insight, including interviews,
participant observation, and drawing. Ultimately, constant comparative analysis of the data
revealed that the children who participated in the study coped with their parents mental illness
by finding the rhythm and maintaining the frame (p. 1130). According to the authors, finding
the rhythm deals with the short-term management of day-to-day living, and consists of
monitoring their parents mood through observation of behavioral patterns, interpretations of
significant changes, and the subsequent adjusting of their own behavior to fit the need of their
parent and minimize the effects of their parents illness (p. 1132). Maintaining the frame
involves more long-term self-preservation coping strategies consisting of creating a healthy
distance in their relationship with their parent by temporarily physically or mentally escaping,
maintaining a sense of self by continuing to pursue their own interests, and assessing the costs
and benefits of disclosing problems to others and knowing when trusted others would be
available or able to help and when they were flying solo or needed to opt out of their
relationship with their parent (p. 1135-1136). Mordoch and Halls research is consistent with
other exploratory studies that indicate that even in early to middle childhood, kids are keenly
aware of their parents psychiatric issues and develop approaches to manage both the self and
the other.

Ahlstrom, Skarsater, and Danielson (2011) conducted a similar exploratory qualitative

study in which phenomenological-hermeneutic analysis was used to gain insight into childrens
understanding of life with a mentally ill parent. Similar to Mordoch and Hall (2008), Ahlstrom et
al. discover that children of a mentally ill parent live life in a consistent state of unpredictable
flux that they have to learn how to manage. Narrative interviews with eight children and young
adults between the ages of six and twenty-six attempted to reveal what life was like with a parent
who was diagnosed with major depression. Again, consistent with Mordoch and Halls concept
of finding the rhythm, Ahlstrom et al. found that children often perceived their role in the family
as that of a rescuing observer, in that they would monitor and identify changes in mood in
order to make family life less unpredictable by adjusting to fit the needs of their parent (p.
562). This was called being attentive and being considerate and demonstrated a feeling of
responsibility on the part of the child, even at an early age to accommodate the needs of their ill
parent. The data also revealed that children fluctuated between feeling like a rescuing observer
and a frustrated observer; often feeling distraught, violated, and personally attacked when their
parent experienced extreme emotional states. This often resulted in feelings of loneliness and
helplessness, and often impacted their daily activities and ability to function normally.
Importantly, Ahlstrom et al. suggest that, without the appropriate levels of support from trusted
others and healthcare resources, this constant state of flux can be psychologically damaging, and
despite coping methods and resiliency, can be carried into adulthood.
Research on childrens understanding of parental mental illness has also focused on how
children conceptualize and talk about their parents disorder, which is believed to be a key to
developing targeted, preventative interventions. Alasuutari and Jarvi (2012) interviewed ten
children between the ages of eight and twelve and discovered that children use a combination of

professional vocabulary (medically-recognized terminology), empirical vocabulary

(observational descriptions of everyday occurrences), and vocabulary of concern (generally
worries about social stigma and the familys financial instability). The authors framed their
understanding of the discursive practices of children about their parents illness in terms of how
the language used in the interview reflects their role in the narrative. Specifically, they suggest
that the use of professional language seems to remove the childs voice from their own
understanding of and participation in their parents illness, whereas empirical language positions
the child as a participant observer but not the central character of the story, while the vocabulary
of concern positions the child in the center of the narrative, which may be the most empowering
and most personal way of talking about the parents problems (p. 146). Therefore, Alasuutari
and Jarvi argue that practitioners in therapeutic interventions should use vocabulary of concern
more often with children of parental mental illness (p. 146).
Importantly, not all research suggests that the experience of living with a mentally ill
parent is psychologically damaging for a dependent child. For instance, in an analysis of
qualitative interviews conducted with mentally ill parents, their children, and mental health
professionals by the Young Carers Research Group (YCRG), Aldridge (2006) argues that data
suggests that children are not at inevitable risk of harm, neglect, or developmental delay simply
on the basis of their parents mental illness, nor that there will be a necessarily negative impact
on parent-child relationships (p. 83). The research conducted by the YCRG revealed that
dependent children often take on a variety of caretaking responsibilities with their parent,
including everyday domestic duties, nursing and healthcare responsibilities, and emotion care
and crisis support. Although popular opinion among child psychologists argues that this
parentification of younger child caregivers is unhealthy and potentially detrimental to their

development, Aldridge suggests, young caring is not simply indicative of role transference
between children and parents (p. 82), and that data reveals that caring can help to reinforce the
bond between children and parents (p. 83).
Adult experiences and reflections on growing up with a mentally ill parent
Early research examining the effects of parental mental illness on children focused on
risks and outcomes (CITE), and relied on the reports of the parent or health professionals
(CITE). Dunn (1993) was one of the first to explore adult childrens perspectives on their
experience growing up with a mentally ill parent. Dunn focused on children with mentally ill
mothers, and qualitatively analyzed in depth, retrospective interview data from nine adults aged
21 to 41 to examine their experience related to their mothers diagnosis and treatment, the
emotional and relational ramifications of their mothers illness, and the current state of their
mothers illness and the evolving nature of their relationship. Dunns analysis reveals that
parental mental illness played a prominent role in participants childhood memories with five
major themes emerging from adult childrens retrospective accounts. Specifically, childrens
experience of parental mental illness centered around the themes of abuse and neglect, isolation,
guilt and loyalty, grievances with mental health services, and supports. Generally, children
reported that their mothers mental illness profoundly affected them because it often rendered
their mother incapable of providing for their basic physical and emotional needs. Interestingly,
although participants reported feeling a sense of alienation, loneliness, shame, and confusion as a
result of their mothers illness and subsequent dysfunction, children also felt a strong sense of
loyalty toward their mother and guilt over not doing enough to help her or shoulder the burden
among their family members. Additionally, adult children recalled that although their overall
experience with the mental health system throughout the duration of their childhood was

negative due to a lack of support and information about their mothers illness, participants
revealed that they found supportive others elsewhere, both outside and inside the family, who
provided them with much needed stability, escape, and a sense of normalcy.
Kinsella and Anderson (1996) solicited retrospective accounts of adults who grew up
with a mentally ill parent or sibling in order to provide insight on the needs, coping strategies,
and strengths of children who spend their developmental years living with a family member
diagnosed with a serious mood disorder. The participants were asked to recall what it was like to
grow up with a mentally ill parent or sibling, how they coped with the adversities, and what they
believe that they gained from the experience that they have carried with them into adulthood.
The subjective experiences of these family members revealed that they developed both healthy
and unhealthy coping skills. Healthy coping skills were defined as those that were productive
and effective, but did not have secondary adverse consequences. Healthy coping strategies
included constructively escaping through engagement in activities and interests, seeking social
support from others inside and outside of the immediate family, objectifying the illness so as to
separate the ill family member from the disorder, learning about the illness through research, and
calling upon a spiritual or religious faith. However, interviews also uncovered that children may
employ unhealthy or emotionally destructive coping techniques in managing their loved ones
illness. Among these unhealthy strategies were internalizing or closing off intense emotions,
altering their own behavior to accommodate the needs of the ill family member and diffuse
chaotic and distressing situations, and isolating themselves and withdrawing from peers to avoid
social stigma. As a result of their parent or siblings illness, participants reported needing more
information about their family members illness to enhance understanding, support groups and
introduction to others undergoing similar circumstances in order to find a sense of normalcy,

inclusion in the treatment process to express their observations and opinions, and attention to and
recognition of their needs and emotions. Although many studies on the experience and effects of
mental illness on the family focus on negative outcomes and risks, Kinsella and Anderson
discovered that resiliency, creativity, empathy, assertiveness, independence, and heightened
spiritual awareness are also persistent characteristics of family members who grew up in a home
with a mentally ill family member.
Knutsson-Medin, Edlund, and Ramklint (2007) used qualitative analysis of open-ended
questionnaire responses to explore their retrospective experiences of 36 young adult children
growing up with a mentally ill parent and their perspectives on the psychiatric services
previously obtained by their parent. Participants reported that growing up with a mentally ill
parent was characterized by worry, increased responsibility, negative emotions, and changed
parent/child relationship. Specifically, adult children recalled worrying about their parent
committing suicide, not getting the treatment they needed, and the uncertainty and
unpredictability of home life. Participants also frequently cited feeling more grown up than their
peers and an increased sense of responsibility with regard to the care of household tasks, care for
siblings, and instrumental and emotional support for their parent. Those sampled also noted
feeling a number of negative emotions as a result of their parents illness, including shame, fear,
neglect, insecurity, deflated confidence, insufficiency, loneliness, and envy of peers with
normal home lives. Participants reported that these negative emotions often contributed to
decreased functioning in their daily activities. Additionally, participants reported their
relationship with their parent growing up was significantly altered by their parents illness.
Specifically, children reported feeling a loss of childhood and lack of traditional parental support,
discomfort and anxiety about their parents unstable and unpredictable behavior, and a sense of

walking on eggshells in the relationship to avoid triggering a breakdown. In addition to feeling

loss and abandonment with regard to their parent, children interviewed also overwhelmingly
reported negative or insufficient experiences with psychiatric services their parent received,
feeling that a lack of support, concern, and information from healthcare professionals caused
them greater burden.
Foster (2010) used narrative interviews and autoethnography to gain insight into the
experience of growing up with a mentally ill parent and to understand how children managed in
the face of multiple adversities. The exploratory nature of Fosters inquiry allowed for an
evolutionary account of adult childrens experiences with parental mental illness, whereby
participants were free to incorporate both retrospective accounts from childhood and current
perceptions of mental illness, support (or lack thereof), relational implications, roles and
responsibilities, and establishment and maintenance of boundaries. Consistent with KnutssonMedin et al. (2007), through inductive analysis, Foster discovered that the 10 adult children
interviewed experienced significant uncertainty and instability, difficulties maintaining relational
closeness (with the ill parent and in other relationships), traditional parent-child role reversal and
the assumption of significant caretaking responsibilities, and finally, the need to negotiate
boundaries and develop coping strategies in order to gain mastery and control over their own
lives. Specifically, participants discussed
Duncan and Browning (2009) explored the affect of mental schizophrenia on attachment
patterns in their adult children. The authors postulated that growing up with a schizophrenic
mother would create insecure attachment issues that would manifest in various ways in
offsprings adult relationships. Using in depth qualitative interviews, Duncan and Murphy
solicited adult childrens narrative accounts of their experiences growing up with a mentally ill

mother, as well as their experiences in adulthood. Much of the research conducted on adult
children of mentally ill parents focuses on outcomes, and specifically the heightened risks of
clinical psychiatric disorders and developmental deficits in these offspring. However, Duncan
and Browning argue that this focus ignores other lasting effects of parental mental illness on
children, and suggests that if the person is sane and has a spouse, the outcome is successful
and no further attention is warranted (Duncan & Browning, 2009, p. 77). Twenty-four adult
children of schizophrenic mothers were interviewed, and their narrative accounts revealed that
they experienced unpredictability, detachment, and isolation in their childhood relationship with
their mother that they brought into their adult relationships. Participants reported perceiving that
a lack of trust, intimacy, vulnerability, and security with their mother that affected their ability to
effectively form and maintain both platonic and romantic relationships in adulthood. Although
this study was not attempting to establish a definitive causal relationship between having a
mentally ill parent and adult attachment issues, qualitative data revealed a consistent pattern
among those participants sampled.
Murphy, Peters, Jackson, and Wilkes (2011) conducted a meta-synthesis of qualitative
peer-reviewed studies designed to examine the affect of parental mental illness on adult children.
The purpose of the synthesis was to attempt to identify themes and patterns across studies in this
area order to provide a greater understanding of consistencies in the experiences of adult children
of a mentally ill parent. Results of the meta-synthesis revealed four overarching categories and
twenty-six themes that recurred across the seven articles reviewed, including issues related to
family relationships (parentification, parental absence, and emotional parental bonding), external
familial relationship changes (isolation and support and interpersonal trust), adult childrens
emotional reflections (self-concept, grief, worry, escape and blocking, and healing hope and

growth), and illness-related concepts (lack of information and information-seeking). This is

consistent
Nathiel (2012)
Little research has been conducted on the evolving nature of the relationship between
mentally ill parents and their children. What happens to the relationship when the children
become adults? The small amount of research that has examined the experiences of adult
children of mentally ill parents focus on retrospective accounts of childhood experiences, and on
the individual, persistent psychosocial effects of growing up with a mentally ill parent.
What is an interesting, and a relatively understudied area of research is that very few
empirical studies have qualitatively examined adult childrens experiences with mentally ill
parents, and even fewer have examined adult childrens experiences as adults (Murphy, Peters,
Jackson, & Wilkes, 2011). For instance, in their meta-synthesis of the qualitative literature on
adult childrens experiences with a mentally ill parent, Murphy et al. systematically review and
analyze qualitative studies focused on this relationship. In discussing the parameters of the metasynthesis, the authors suggest that the analysis reflects on [adult childrens] experiences as
children growing up with one or both parents who had a mental illness, meaning that studies in
this area are primarily reflective in nature, focused on investigating childhood experiences with
the parent, as opposed examining the participants experiences as an adult with their parent.
Moreover, noticeably absent are empirical investigations focused on the adult childs evolving
relationship and communication with the mentally ill parent. The research that does examine the
adult childs experience focuses on the attachment issues that adult children of mentally ill
parents carry with them into adult relationships, the emotional tolls experienced by these adult
children, or on their own mental instability as an effect of their abnormal childhood. Although

frequently framed in the literature through the lens of attachment theory (Sroufe, Egeland,
Carlson, & Collins, 2009; Nathiel, 2012), an analysis of the qualitative literature demonstrates
that adult children are not framing their narratives in the realms of attachment theory[and]
for their story and narratives to be truly represented in scholarly literature, then it must reflect
their chosen conceptualizations and discourse (Murphy, Peters, Jackson, & Wilkes, 2011, p.
3439).
Additionally and importantly, their narrative does not end with their childhood, but the
bulk of the literature examining adult children of mentally ill parents narrows in on this earlier
period of life, neglecting latter stages. This dearth is especially troubling considering that it
signifies a convenient avoidance of a complicating but inescapable reality; a childs relationship
with his or her mentally ill parent does not end when they turn 18. Nor does the relationship only
exist in formative memories and reflective anecdotes once the child becomes a legal adult.
Understanding mental illness in the familial context
Arrington (2005) notes the importance of studying health in the context of family,
suggesting the potential impact of illness is not only on people who experience illness firsthand,
but also on their families (p. 142). Importantly, health and family have a mutually influential
relationship, such that, just as illnesses impact families, families also have a significant impact
on illness and the illness experience. For individuals with an illness, family members serve as
primary sources of social and instrumental support (Albrecht & Goldsmith, 2003; Arrington,
2005). Support networks like families provide ill individuals with feedback on health behavior
and risks, offer general health information, contribute health-related decision-making, aid in the
provision of referrals to professionals, and assist in the adherence to treatment regimens
(Albrecht & Goldsmith, 2003).

Early scholarship on mental illness and the family was dominated by the belief that
families had a powerful etiological role in the mental illness of their family member (Muhlbauer,
2002). In other words, mental illness was seen as the byproduct of family dysfunction (CITE
THIS) and family systems research was focused on examining how parental, especially maternal,
abnormalities in upbringing nurtured mental illness in children by disrupting crucial
developmental periods. Research has since moved away from this belief, and focused instead on
the impact that the illness of one family member has on the family unit and how the family
manages the illness experience. Importantly, research has demonstrated that the family serves a
primary role in the care of a loved one with a mental illness (Rose, Mallinson, & Gearson, 2006;
Bevan, & Pecchion, 2008). Previous studies examining mental illness and the family focus on
the phases or stages of the illness experience for the family (Muhlbauer; Jeon & Madjar, 2002),
the impact of mental illness on family roles, responsibilities and dynamics (Nicholson, Sweeney,
& Geller, 1998), the stigma associated with mental illness (Ostman & Kjellin, 2002; Hinshaw,
2005), and on coping, management of the illness, and affective outcomes like caregiver burden
(Loukissa, 1995; Hoenig & Hamilton, 1965; Thompson & Doll, 1982; Francell, Conn, & Gray,
1988; Perlick et al., 2004). These studies illustrate the level of influence the family has over the
management of a mental illness.
Caregiver burden is defined as the multidimensional negative consequences of care
giving for an ill loved one, and has been researched extensively in the context of mental illness
(Rose, Mallinson, & Gerson, 2006). Hoenig and Hamilton (1965) distinguished between the
objective and subjective experience of burden experienced by lay caregivers, and these two types
of caregiver burden are still recognized and explored by scholars. According to Rose, Mallinson
and Gerson, objective burden involves the visible disruption to a familys daily life that result

from the mentally ill members disruptive behaviors. For instance, this may involve reduced
leisure time, negative effects on the familys interactions and relationships within and outside of
the family (i.e., neighbors, family friends, extended family), reduced ability to function as a
family, and the negative financial implications of mental illness (i.e., unemployment, cost of
continued medication and therapy). Subjective burden refers to the invisible emotional load the
family experiences as a result of the mental illness. This type of burden is characterized by the
caregivers feelings of worry, guilt, and distress. Research on caregiver burden is especially
prevalent in mental health research, as studies have found an association between levels of
family caregiver burden and health-related outcomes of the mentally ill individual, like
symptoms and adherence to treatment (Perlick et al., 2002).
Although early research on caregiver burden in the context of mental illness primarily
examined issues related to objective burden (Loukissa, 1995), more recent exploratory,
qualitative research has revealed that issues related to subjective burden are often the most
salient for caregivers, especially with regard to worry about the future and guilt over not being
able to do more (Rose, Mallinson, & Gerson, 2006; Jeon & Madjar, 1998; Muhlbauer, 2002).
Additionally, research on caregiver burden has largely focused on samples of parents caring for
adult children with a mental illness and spousal care giving, but has largely neglected the
population of children caring for their mentally ill parent, and the implications that this care
giving has on the relationship.
A few studies have conducted exploratory research to examine the mental illness
experience of the family, identifying stages or phases of the experience (Tessler, Killian, &
Gubman, 1987; Terkslen, 1987; Spaniol & Zipple, 1994; Muhlbauer, 2002). These studies are
largely qualitative in nature, and involve semi-structured interviews or focus group interviews

with family members of mentally ill individuals. Through thematic analysis, these studies
highlight the phases or stages of the illness experience for the family, emphasizing those issues
related to caregiver burden. For instance, Spaniol and Zipple (1994) analysis revealed four
primary stages of the recovery process for families of mentally ill individuals: discovery/denial,
recognition/acceptance, coping, and personal/political advocacy. In a qualitative analysis of the
familys disease experience, Muhlbauer (2002) found a sequential progression of phases
through which the majority of participants journeyed (p. 1082). The six phases she identified
were: (a) development of awareness, (b) crisis, (c) cycle of instability and recurrent crises, (d)
movement toward stability, (e) continuum of stability, and (f) growth and advocacy.
According to Muhlbauer (2002), the experience of a mental illness by family members is
analogous to a sailors experience of a storm on the ocean. Muhlbauer suggests that the first
phase is the development of awareness phase, and it is analogous to storm warnings. This
phase of the experience involves a recognition that a problem exists combined with increasing
concern and uncertainty. The second phase of the familys journey identified by Muhlbauer
(2002) is a time of crisis, analogous to confronting the storm. This phase is characterized by an
exacerbation of problems beyond the familys ability to control[and] tremendous emotional
distress (p. 1082). According to Muhlbauer, this time of crisis, although nonviolent, can be
terrifying and traumatic, and can have a tremendous impact on the family. A cycle of
instability and recurrent crises constitutes the third phase of Muhlbauers (2002) and is
characterized by feelings of anger, grief and loss as a result of volatility in the family members
condition and symptoms and episodic, but regular crises. This stage involves tremendous strain
on the family as a result of the objective burdens they experience during this phase like
disruption of daily life, financial strains, and increased encounters with stigma on the part of

outsiders. In the context of Muhlbauers storm analogy, in this phase, the perfect storm may have
passed, but during this time a family is still adrift in perilous seas, with a long period of rough
waters ahead (p. 1083). During this time family members may feel extreme, uncontrollable anger
and resentment due to the recurring turbulence the family experiences as a result of the illness.
According to Muhlbauer (2002), phase four is a movement toward stability, and a time
characterized by the development and management of strategies and techniques to deal with the
depression, the management of the feelings of guilt and resentment, and struggles to regain
control. Muhlbauer equates this fourth phase to realigning the internal compass after the storm.
During this phase, families often just accept that they did not cause the disease, there is no cure,
and that they cannot control the situation. Muhlbauers (2002) fifth phase is one of a continuum
of stability, which is characterized by Finally, the sixth phase revealed by Muhlbauers
research is that of growth and advocacy, during which family members experience
Narratives in Health
The narrative paradigm assumes that narratives, or stories, are the basis of all human
communication, reasoning and action. In other words, this perspective assumes that humans
structure their lives through narratives. Narrative is defined as any cohesive and coherent story
with an identifiable beginning, middle and end that provides information about a scene,
characters and conflict; raises unanswered questions or unresolved conflict; and provides
resolution (Hinyard & Kreuter, 2007, p. 778). Fisher (1984) defines narrative more broadly as
words or deeds that have sequence and meaning for those who live, create, or interpret them
(p. 3). At the crux of the narrative paradigm is the idea that people are essentially homo narrans
(Fisher, 1984; Fisher 1985). In other words, human beings are essentially storytellers and
narratives are the primary way in which humans understand, interpret, and communicate about

their realities (Hinyard & Kreuter, 2007; Kreuter et al., 2007, Bochner, 2003). All narratives are
meaningful in that they allow us to understand our own and others actions. Further, Fisher
(1985) contends that one of the primary functions of the narrative paradigm is to offer a way of
interpreting and assessing human communication that leads to critique, a determination of
whether or not a given instance of discourse provides a reliable, trustworthy, and desirable guide
to thought and action (p. 351).
Illness narratives represent a social constructionist approach to health communication and
acknowledge the capacity of individuals to construct their own life stories and make their own
decisions (Jones, 1996; as cited by Sharf and Vanderford, 2003, p. 16). By giving patients and
those close to them a voice to tell their own story, Sharf and Vanderford contend that illness
narratives challenge the voice of medicine as the primary means of understanding health and
disease (p. 15) and highlight the meaning of the illness experience (p. 16) for the patient.
Thus, illness narratives provide not only a means for the patient to make sense of their illness and
assert some degree of control over their health, it also enables others to better understand and
empathize with those affected by the illness by bridging the gap between the objective language
of the medical world and the subjective language of the lifeworld. Importantly, narrative
scholarship acknowledges that both the act of telling ones own narrative and the act of critically
listening to anothers narrative can be powerful and transformative.
Although Sharf and Vanderford (2003) acknowledge that family and close friends are
significantly affected by the illness experience, they also recognize narrative scholarship has not
adequately examined caregivers, family members, and friends narrative accounts. Family
narratives have the potential to provide insight into the caregiver illness experience and may be a
valuable resource with the potential to enhance the health literacy for others who are coping with

similar situations and caring for someone with a mental illness. In other words, understanding
how other families of mentally ill individuals make sense of their family members illness,
provide instrumental and emotional support for their family member, make decisions regarding
their family members health, and manage the affective outcomes that accompany a disease of
this magnitude can be of immense benefit to other lay caregivers in similar situations and serve
as didactic tools for improving health literacy.
Illness narratives have potential to be useful in promoting agency and awareness on the
individual, dyadic, group and community levels. According to Sharf and Vanderford (2003)
some of the best told and most insightful illness narratives not only prove helpful in
strengthening the tellers capacity for dealing with illness-related problems but also awaken
listeners or readers to issues that they may not have been aware of or that are attempting to deal
with in their own lives (p. 23). Thus, illness narratives not only benefit the story-tellers, but they
also can be equally beneficial to the audience. For instance, according to Arnst and Droge (1987)
one of the functions of narratives is to make sense of health and health outcomes (as cited by
Sharf & Vanderford). By listening to other families plots unfold and gaining insight into how
other families interpret events, ascribe meanings, and justify actions, audiences can begin to
draw connections and assign meaning to similar events that are happening or that have happened
in their own lives and gain some perspective (p. 17).
Narratives may also reveal the storytellers values or reasons for actions (Sharf &
Vanderford, 2003, p.25). As Charmz (1999) notes, often illness narratives become moral
parables of right and wrong, of moral virtue and moral flow, of reason and rationalization (as
cited by Sharf & Vanderford, 2003, p. 25). Making a decisions with regard to their family
members mental health treatment regimen reflects an assessment about past events, current

demands, and future consequences (p. 25). A familys justification for their decisions and
actions regarding the mentally ill family members treatment has implications for the audience of
the narrative in that it could influence audience members act in a similar manner (Hinyard &
Kreuter, 2007). As Sharf and Vanderford contend, one persons story frequently has a salutary
impact on anothers decision (p. 25). Therefore, family narratives may act as a model for others,
influencing their decision-making and perceptions of efficacy by informing them about
symptoms of the disease, treatment options, management strategies, and resources for seeking
help.
Narrative has been employed within the context of mental health, but only in limited
contexts. For instance, narratives have been used to explore the experience of those with a
mental illness and how they make sense of their disease, the effects of mental illness on the
family (Nicholson, Sweeney, & Geller, 1998; Pejlert, 2001; Arrington, 2005; Veltman, Cameron,
Stewart, 2002; Rose, Mallinson, & Gerson, 2006), how mental illness contributes to caregiver
burden (Tsang, Tam, Chan, Chang, 2003), how mental health narratives can promote feelings of
empathy and understanding (Jeon & Madjar, 1998; Charon, 2001), and how mental health
narratives can create a sense of community for those affected by these types of illnesses
(Muhlbauer, 2002).
Schank and Berman (2002) assert in some sense, all stories can be considered didactic in
nature, in that they are intended to teach (p. 288). Additionally, Shank and Berman suggest that
in listening to the stories of others we may learn something new, or we may revise a belief (p.
292). They argue that stories, or narrative enhance learning capacities because stories are
comprised of details that give context and meaning to abstract principles (p. 310). Furthermore,

Shank and Berman contend that narratives provide more indexes to help listeners remember the
lessons so they may use them to solve novel problems (p. 310).