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Analysis of a support group for children of parents with mental illnesses: Managing stressful situations

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Abstract

We report an ethnographic analysis of a psycho-education and peer-support program for school-aged children of parents with mental illnesses. We conducted a critical discourse analysis of the program manual and observed group interactions to understand whether children shared program goals predetermined by adults, and how, or if, the intervention was responsive to their needs. Children were expected to learn mental illness information because "knowledge is power," and to express difficult feelings about being a child of a mentally ill parent that was risky. Participants used humor to manage group expectations, revealing how they made sense of their parents' problems, as well as their own. Suggestions are made for determining good mental health literacy based on children's preferences for explaining circumstances in ways they find relevant, and for supporting children's competencies to manage relationships that are important to them.
Qualitative Health Research
2014, Vol. 24(9) 1171 –1182
© The Author(s) 2014
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DOI: 10.1177/1049732314528068
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Article
We studied a peer support group for children of parents
with mental illnesses in Canada. Our analysis was under-
taken in the context of newly emerging policy, practice,
and research on this subject, and early evidence about the
effectiveness of interventions for children and families
(Reupert et al., 2012; Siegenthaler, Munder, & Egger,
2012). It is estimated that 12.1 % of all Canadian children
under age 12 live with a mentally ill parent. This repre-
sents 570,000 children, many of whom are exposed to
one or more serious parental psychiatric disorders such as
anxiety, major depression, and bipolar disorder (Bassani,
Padoin, Philipp, & Veldhuizen, 2009). Prevalence is
likely comparable to higher international figures, which
includes individuals age 18 (Maybery, Ling, Szakacs,
& Reupert, 2005).
Much has been written about children’s risk for devel-
oping mental illness. Compared to peers, these children
might have greater cognitive, emotional, and behavioral
difficulties, potentially leading to diagnosable psychiatric
disorders (Beardslee, Versage, & Gladstone, 1998;
Göpfert, Webster, & Seeman, 1996, 2004). However,
hereditary effects of illness might be less detrimental for
children than the social, psychological, and economic
consequences of living with an illness (Hall, 2004; Rutter,
1989). Children describe unpredictability and other
difficulties managing daily life, underscoring the need to
prevent negative short- and long-term outcomes, and to
determine which interventions, if any, are helpful to chil-
dren (Gladstone, Boydell, Seeman, & McKeever, 2011).
Psycho-Education and Peer-Support
Groups for Children
The Children’s Group is a pseudonym we use to refer to
an 8-week, psycho-educational and peer-support program
for school-aged children. Referrals were made to the pro-
gram by children’s mental health organizations, protec-
tion agencies, and family members. Comparable
programs combine peer support and shared personal
experiences with structured informational content on
mental illness to increase children’s resilience and pre-
vent future mental illnesses (e.g., Orel, Groves, &
Shannon, 2003; Pitman & Matthey, 2004).
528068QHRXXX10.1177/1049732314528068Gladstone et al.Qualitative Health ResearchGladstone et al.
research-article2014
1University of Toronto, Toronto, Ontario, Canada
Corresponding Author:
Brenda M. Gladstone, SickKids, 555 University Avenue, Toronto,
Ontario, Canada M5G 1X8.
Email: Brenda.gladstone@sickkids.ca
Analysis of a Support Group for
Children of Parents With Mental
Illnesses: Managing Stressful Situations
Brenda M. Gladstone1, Patricia McKeever1, Mary Seeman1,
and Katherine M. Boydell1
Abstract
We report an ethnographic analysis of a psycho-education and peer-support program for school-aged children of
parents with mental illnesses. We conducted a critical discourse analysis of the program manual and observed group
interactions to understand whether children shared program goals predetermined by adults, and how, or if, the
intervention was responsive to their needs. Children were expected to learn mental illness information because
“knowledge is power,” and to express difficult feelings about being a child of a mentally ill parent that was risky.
Participants used humor to manage group expectations, revealing how they made sense of their parents’ problems, as
well as their own. Suggestions are made for determining good mental health literacy based on children’s preferences
for explaining circumstances in ways they find relevant, and for supporting children’s competencies to manage
relationships that are important to them.
Keywords
children, discourse analysis, dramaturgical analysis, ethnography, group interaction, humor, resilience, risk, symbolic
interactionism
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1172 Qualitative Health Research 24(9)
Although programs have been described in detail (e.g.,
van Doesum & Hosman, 2009), evidence about their ben-
efit is just emerging (Reupert et al., 2012). Evidence is
most often elicited by gathering information from clini-
cians and parents, and effectiveness is measured by dem-
onstrating children’s ability to meet program goals that
have been determined by adults (Orel et al., 2003; Pitman
& Matthey, 2004; Riebschleger, Tableman, Rudder,
Onaga, & Whalen, 2009). Children tend to be asked sup-
plementary questions concerning their likes/dislikes,
which they answer in positive but truncated and vague
ways, making it difficult to fully determine how they
respond to program goals.
We examined children’s behaviors in and responses to
the Children’s Group to understand whether they shared
the goals of the program, and how, or if, their needs were
met. Therefore, we did not focus our study on targeted out-
come measures as the primary—and often assumed to be
the only—route to really understanding what is effective.
Rather, we analyzed the Children’s Group as an interactive
setting and conceptualized it as more than a straight-
forward, information-sharing, and emotional support ses-
sion, using a qualitative approach described as critical
dramaturgy (Paolucci & Richardson, 2006a, 2006b).
Examining the Children’s Group as
an Interactive Setting
Our study was based on Goffman’s (1959) dramaturgical
analyses of the reciprocal influence individuals have on
one another in face-to-face encounters, influenced by
George Herbert Mead’s (1934) sociological formulation
of symbolic interactionism and expanded upon by Herbert
Blumer (1969). According to symbolic interactionist the-
ory, people ascribe meaning to behavior and things as a
central element of life, shaping individuals’ interpreta-
tions of themselves, events, environments, and others;
those interpretations influence how people respond to sit-
uations, regardless of the objective reality of the situation
itself (Charmaz, as cited in McLeod & Lively, 2007).
Taking a symbolic interactionist perspective is particu-
larly apt for considering how individuals alter their
responses to subtle, sometimes unrecognized social com-
parisons or through confrontation and conflict (McLeod &
Lively). This perspective accords with recognizing that
children, despite vulnerabilities, are full participants in
social life. Their behaviors are competent, rational, pur-
poseful, and “practical achievements” of social interac-
tion, albeit contained, shaped, and bounded by the contexts
in which they live (Hutchby & Moran-Ellis, 1998, p. 14).
Blumer (1969) elaborated important elements of sym-
bolic interaction, which led us to conceptualize the sup-
port group as a type of performance in which meaning
arose out of participant interactions such that the
performance was handled in and modified through a joint
interpretive process in which individuals sought to influ-
ence one another. Uncertainty, contingency, and transfor-
mation are part of dynamic interaction, which is consistent
with Goffman’s (1959) notion of social life as dramatic
performance. Goffman emphasized the dramaturgical
aspects of face-to-face encounters as “the reciprocal
influence of individuals upon one another’s actions when
in one another’s immediate physical presence” (p. 15).
His analyses of interaction demonstrate how social envi-
ronments are settings of mutual monitoring (Clarke,
2005) because individual beliefs and interpretations are
influenced through social intercourse as participants
attempt to manage how they and others respond to the
situation. For example, participants in the Children’s
Group practiced the art of impression management, tak-
ing “expressive responsibility to prevent the many minor
but inadvertent acts that happen to be well designed to
convey impressions that are inappropriate” (Goffman, p.
208). For the performance to succeed, the participants
learned to act as performers with loyalty (that is, develop-
ing a mutual moral obligation), discipline (sharing
accountability), and circumspection (readying them-
selves for unseen events).
From a critical perspective, we focused on the micro-
enactment of power as participants managed, manipu-
lated, and controlled information to ensure a smooth
performance and prevent embarrassing disruptions
(Goffman, 1959). We were also interested in the behav-
ioral expectations of the setting, itself framed by broader
arenas of interaction in which shared institutionalized
meanings governed (often idealized) presentations of self
(Paolucci & Richardson, 2006a, 2006b). As an object of
analysis, discourse is one way of thinking about how
issues are framed and function to organize children’s
experience and guide their behaviors. By discourse we
mean two things: a group of ideas or patterned way of
thinking that is identifiable in written and verbal commu-
nications and located in wider social structures (Lupton,
as cited in Cheek, 2004, p. 1142); and its effects, evident
in the ways discourses are part of the construction of
social identities and social relations, and systems of
knowledge and belief (Fairclough, 1992).
Goffman (1959) described how issues are framed by
directing our attention to a particular part of reality
(Paolucci & Richardson, 2006a), making critical dis-
course analysis (CDA) compatible with his body of work.
In CDA it is assumed that language is highly symbolic,
shaping the way phenomena are viewed; that is, language
is not just descriptive: it does things. Our intention was to
analyze how metaphors, rhetorical strategies, phrases,
and images were used in the Children’s Group program
manual to shape the portrayal of information about men-
tal health and illness in the context of being a child of a
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Gladstone et al. 1173
mentally ill parent (Petersen, 2001). We wanted to under-
stand how ideas were imported to evoke a larger meaning
in the text (Hollander & Gordon, 2006), because the man-
ual content itself was shaped by discourses external to the
text (Taylor & Ussher, 2001). Therefore, prior to imple-
menting the CDA, we reviewed contemporary ways of
thinking about mental health/illness and children, as
described in publicly available government documents at
the time of the study.
Study Design
Study criteria aligned with the Children’s Group admis-
sion requirements. Seven children, 7 to 13 years of age,
enrolled in the study group. Children of parents with a
temporary illness (i.e., drug-induced psychosis) or with a
mental illness and developmental disability were
excluded. Upon receipt of ethics approval from affiliated
hospital- and university-based research institutions, the
Children’s Group intake coordinator informed individu-
als who referred children to the program about the study.
Those who agreed to hear more about it were contacted
directly by the first author to arrange a convenient meet-
ing time and location, most often the home where the
child currently lived.
The recruitment and consenting process was com-
pleted 1 week prior to the first session of the Children’s
Group to allow participants sufficient time to consider
study procedures, potential harms and benefits, and to ask
further questions without interfering with the pro-
grammed activities of the first session. The first author
explained the study further, addressed questions, and
obtained written consent from the parents or legal guard-
ians and assent from the children. Children preferred to
complete this process in the presence of their parent or
legal guardian. Although there were no refusals with
respect to participation, children were reassured that they
could leave the study at any time, for any reason; how-
ever, they would have to join a concurrent Children’s
Group session in a different location if they wanted to
continue the program, and data collected to that point
would be analyzed. This might have been less convenient
for the child and the family; however, it was not ethical to
exclude children from the program because of the study.
The Children’s Group facilitators also provided consent
to participate in the study.
The three-stage, iterative study process included: (a) a
critical discourse analysis of the program manual; (b) par-
ticipant observation and informal interviewing during
group interactions; and (c) a separate group interview with
the children during the final session, after the completion
of formal program activities. The Children’s Group facili-
tators were not present for this last discussion. Children
were asked direct, evaluative questions about what they
liked and did not like about being part of the Group, what
they found helpful, and what they would have liked to
change to improve the program for other children. The
first author conducted all data-generation activities. The
children’s drawings, used in the group to “show and tell”
their experiences, became another source of indirect
responses to the program but were not analyzed as visual
data on their own (Guillemin, 2004). The full range of
routines and group activities was documented by compre-
hensively sampling different time intervals and events
over the course of the 8-week program. A confidential
question box created for the study allowed children to ask
questions anonymously and provide feedback about the
group. The children were told that no one would observe
them when they occupied the quiet space (a time-limited
space to opt out of program activities).
Following Miles and Huberman (1994), we developed
a specific data-management strategy in alignment with the
study purposes. The first two steps, data reduction and dis-
play, involved transcribing and translating raw data—
handwritten field notes, photographs, drawings, and so
forth—into a digital format that could be managed elec-
tronically. We also constructed descriptive summaries for
each of the sessions, which were helpful to check emerging
analysis when dealing with enormous amounts of data.
To aid the analysis of social interaction, we developed
a system for transcribing field notes into a dialogic format.
The observational data—the handwritten, recorded obser-
vations of the group in situ and later transcribed into a
digital format—were further transformed to explicitly
reflect what participants said to each other and what they
did together. This final transcription resembled a theatrical
script, allowing us to follow how participants responded
to one another verbally and what they did with each other
during nonverbal activities. This dramatic reworking of
the data also included text that functioned like stage direc-
tions in a play, indicating scenery, props, and other back-
ground information necessary to perform the action
required in that scene. These transcripts were similar to
those generated out of focus groups and shared the same
potential to highlight the dramatic interaction between
participants, enabling us to move beyond simplistic analy-
sis (Kitzinger, 1994). An illustrative example of a dialogi-
cal script is included in the results section of this article.
A separate set of reflexive notes documenting personal
observer responses and analytic memos allowed a cou-
pling of observations with preliminary analysis in an
iterative process from the outset. Photographic field notes
documented visual data (drawings, props, and settings;
not human subjects) and were incorporated into the itera-
tive analytic process. We followed a classic set of coding
strategies for thematic analysis (Braun & Clarke, 2006).
The CDA considered (a) the context that produced the
program manual; (b) the manual details; and (c) how the
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1174 Qualitative Health Research 24(9)
information in the manual content was received by par-
ticipants during sessions of the Children’s Group
(Fairclough, 1992). We asked questions about how, why,
and when the manual was produced and how the author-
ity to speak on mental health and illness and being a child
of a mentally ill parent was established in the manual
(Crowe, 2005).
Results
The Script: The Children’s Group Program Manual
In this article we focus on an analysis of participant
responses to the information and support activities of the
Children’s Group. Accordingly, our CDA is limited to a
brief overview of program beliefs about mental health
and illness and what it means to be a child of a mentally
ill parent. We suggest that the manual content became a
kind of script outlining what was expected of the perfor-
mance to follow, which was integral to our analysis of
children’s responses to the program. The manual
described mental illness as an illness “like any other,” as
a brain disorder represented by “the broken brain.” It pos-
ited that abnormal parental behaviors are symptoms of
illness, that the illness is a chronic condition that requires
trained medical experts for care, and that “children are
not responsible for parents’ wellbeing.” Hereditary risk
was described as only slightly greater for children of par-
ents with mental illnesses; real risk was from prolonged
exposure to the stress of living with unpredictable and
frightening parental behaviors.
The manual suggested that children are “naturally
skilled and knowledgeable,” but adopt problematic cop-
ing behaviors that can lead to stress, and physical and
“even mental illnesses.” To remain “mentally healthy,”
at-risk children must learn to stop thinking negatively;
express their feelings, especially fears related to illness
behaviors; ask for help; and understand they did not cause
the illness nor can they control or cure it. They can “learn
to cope with it.” The manual stated that children must
learn to “feel and be safe,” to become competent manag-
ers of their own thoughts, feelings, and behaviors so that
they can develop into persons who have control, choice,
and responsibility, but only over “how their own [and not
their parents’] story will go.”
Children were represented in the manual as “innately
resilient,” like other children, but also as having coping
skills that “require fine tuning, to learn to act appropri-
ately.” Like other children, they are also dependent on
adults for support, but might require more support because
of possible learning disabilities, social-skill deficits, and
the social isolation and invisibility assumed to be central
to their experience. Consequently, “their needs for support
may [also] be hidden from view.” Child–parent
relationships might be unsafe because of the dysfunctional
thinking, uncontrolled emotion, and unmanaged behav-
iors associated with mental illnesses, whereas relation-
ships with other adults might be more trustworthy. The
manual pointed to significant adults in the children’s life,
such as the group facilitators—who had legal responsibili-
ties for protecting children—but also those biomedical
and scientific experts whose knowledge informed and
authorized the manual content. Children who acquire
appropriate knowledge are protected because “knowledge
is power”; however, information about genetic risk was
played down to shape hopeful futures in which children’s
subjectivities are constructed as positive.
The Performance: Children’s Responses to the
Program
We use illustrative examples from the observational data to
show how program beliefs were implicated in perfor-
mances of the Children’s Group and how children
responded to expectations outlined in the manual. We use
dramaturgical language to describe two broad but interre-
lated analytic categories. The first describes how partici-
pants performed mental health and illness talk. The second
category refers to how they performed as children of men-
tally ill parents. Seven children attended the group we
observed; there were two sets of siblings. All children lived
with the ill parent. One parent was hospitalized at the time
of the study. Parental diagnoses included bipolar disorder,
schizophrenia, obsessive-compulsive disorder, depression,
and anxiety. There was an experienced facilitator and
another in training; one ethnographer observed the group.
Performing Mental Health and Illness Talk
Emphasis was put on learning the right language in the
Children’s Group. There was a correct way to talk about
mental illness and an obligation to use acceptable lan-
guage. The children learned to identify with each other by
repeating the phrase, “We are all here because we have a
parent with a mental illness.” The phrase worked drama-
turgically to convey specific meanings. It framed a ratio-
nale for the group and controlled expectations about how
they should think about each other, and in a way that
incorporated certain values. In conjunction with other,
more explicit teachings about correct mental health infor-
mation, children were given explicit language to explain
and talk about their experiences and to articulate their
needs and feelings. By verbally acknowledging mental
illness as the reason for attending the Children’s Group,
the children were initiated into a collective understanding
about their individual circumstances and asked to develop
a mutually agreeable way to interpret and give meaning
to their experiences.
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Gladstone et al. 1175
The children resisted medical and illness language. As
talk turned to specific diagnoses, Colin1 asked, “Why
can’t they call it manic happiness?” Colin was observed
smiling to himself in response to his own joke. It seemed
to us that he knew the correct medical terminology. To
play with these words he had to have a fairly sophisti-
cated understanding of bipolar disorder as a psychiatric
category referencing mania and depression. By making
fun of the grim emphasis of this medical label, Colin was
able to question how behaviors are understood and cate-
gorized through language.
In other instances, children talked about “it” as a “prob-
lem” and ignored constant admonishments to use “mental
illness” to describe their experiences. This happened most
often when children’s talk emphasized behaviors that
marked their parents, and possibly themselves, as different.
For example, in one exercise Colin and Eliot liked Mark’s
imaginary book title, Why is My Parent Different? The
word “different” seemed to convey an aspect of the lan-
guage that was otherwise missing from the proscribed
group language, that circumstances that signify difference
itself could be a problem for the parent and for the child.
The struggle to define the problem is indicative of how
challenging it was to discern whether the talk about ill-
ness—children’s ability to recognize and be knowledgeable
about it—concerned its effect on the parent or the child.
Such confusion was worrying in light of the program
belief that psycho-education is a significant protective
factor for children. Children who misinterpret their par-
ent’s behaviors as something other than a symptom of ill-
ness are likely to feel guilty and responsible for their
parent’s difficulties. These feelings make it difficult to
shift self-perceptions so that children believe they have
some control over their own future. The children were not
asked if they felt guilty or to blame for their parent’s or
family’s circumstances, and no participant expressed
these feelings overtly. However, consider the separate
cases of Michele and Mark.
Michele’s family members wanted her to understand
that her parent behaved badly toward her because of
“delusional thinking,” and that Michele was not to blame.
Yet Michele seemed angry, and her responses focused on
her own feelings rather than the medical explanations
about the causes of her parent’s behaviors. She expressed
this explicitly with words and in her drawing of her par-
ent’s “well” and “unwell” behaviors. Michele insisted
that her parent was “threatening,” and rejected medical
explanations of “suspicion” and “paranoia.” Michele
remained convinced that her parent was responsible for
behaviors that affected her. Biomedical talk about causes
did not alleviate Michele’s negative feelings. Conversely,
Mark, who was referred to the group as respite from his
caring responsibilities at home, was very enthusiastic
about learning biomedical educational material. He talked
explicitly about protecting his parent from blame by
teaching his other parent and siblings about the illness.
Mark hoped they would understand that it was the illness
and not his ill parent that was responsible for many of
their problems.
Children expressed irritation and disappointment
when talk about the causes of mental illness was confus-
ing. At the end of a drawn-out sequence trying to guess
how people “get it,” the children were told, “There are a
lot of reasons,” and with finality, “It happens in the
brain.” Ambiguous teachings symbolized by the “broken
brain” were met with frustration and resignation, typified
by one participant who said, “It’s all in their heads.” This
double entendre hinted at the uncertainty in performing
mental illness talk, and whether the behaviors children
witnessed were best explained as originating in their par-
ents’ heads (the broken brain metaphor) or as being just in
their heads—as the exasperated tone of this comment
suggested. Rationalizing bad behaviors by talking about
the causes and consequences of mental illness as a “lack
of control over thoughts, emotions, and behaviors” did
not seem particularly helpful.
Conversely, talk was observed to be least disruptive
when children were asked to describe everyday life when
a parent was not well, and to draw and act out their own
impressions of troubled or unusual behaviors. At these
moments, the children were less likely to tease the facili-
tators, joke with each other, and interrupt planned activi-
ties. Children’s stories depicted problematic behaviors
that were relevant because even if it was just in their par-
ent’s head, they remained consequential, and the children
tended to share a mutual if unspoken agreement about
how they understood the problem.
Performing as Children of a Mentally Ill Parent
As talk shifted from illness to health, program teachings
focused on the children’s abilities to cope better rather
than on parents’ symptoms of illness. Children learned
about risk (“What are my chances of getting it?”) based
on assumptions about the nature of their fears (“I can’t
control it; I didn’t cause it”), which required knowledge
about feeling and being safe (“But I can cope with it.”).
Although risk was on the children’s minds, this appeared
to be difficult for them to express overtly. Instead, chil-
dren asked anonymously, through the question box. They
also distanced themselves from explicit talk about risk,
using jokes and sarcasm.
In the following sequence, participants responded to
the group facilitator, Martha, discussing the difficulty of
talk about, and the stressful emotions associated with,
being a child of a mentally ill parent:
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1176 Qualitative Health Research 24(9)
Martha (M): Does anyone know why we are here tonight?
Eliot (E): To bake a chocolate cake? [Snickering around the
table.]
M: [Somewhat impatiently] Okay, okay. Only one person
speaks at a time . . . you know, like school, but not school.
[pause] So if you look up here on this piece of paper, the
agenda, you can see the kinds of things we’ll be doing.
Augusto (A): But when do we eat?
M: What number is it on the agenda?
A: [In a small voice.] Eight?
M: Then that’s when we’ll eat! [Eliot pulls another chair up
close and puts his feet on it, settling in comfortably, while
Augusto slides down into his seat, slipping three quarters
of his face down into his jacket, as if responding to things
getting serious now.]
M: [Continuing.] You are all here tonight because someone
in your family has a mental illness.
A: [Loudly.] What? [General agreement with this statement
around the table, indicated by murmured assent.]
M: [Ignoring Augusto.] Okay, so let’s all say this together:
[bringing her hands together like a symphony conductor.]
“I am here because someone in my family has a mental
illness.”
All participants: [In unison, with loud voices; no one refuses
or sits out.] “We are here because someone in our family
has a mental illness.”
The final phrase was repeated at different points throughout
the program; here, it was intended to help the children see
themselves in a new way—as family members.
The session began with Eliot resisting Martha’s over-
ture, explaining why they were attending the Children’s
Group. Perhaps he resisted because he did not want to say
what he felt about becoming a member of this group, or
what it might mean to talk about a topic that was risky. Eliot
might have sensed the rhetorical nature of the question,
refusing to produce what was expected of him. His response,
a sarcastic, incongruous, and funny image about “bak[ing]
a chocolate cake,” elicited laughter from the other children.
He challenged Martha without giving away too much about
what he really thought or felt at that point. This tactic helped
Eliot avoid a direct answer to her question. It demonstrated
to everyone present that he was not going to be compliant,
and that he might have his own suspicions about what was
expected of the group—which was probably not anything
as innocuous as his image of baking a cake suggested. The
joke seemed to garner him social capital with the other chil-
dren, who “snickered” in response. Although it is not clear
whether they read the situation in the same way he did, their
suppressed laughter, with its edge of irony, suggests they
were willing to go along with Eliot.
With some ambivalence, Martha invoked familiar
school rules about turn taking and drew attention to the
agenda to manage the disruption. This statement reinforced
to the group the expectations about how things should
unfold. Martha reasserted her authority and the children
obliged, allowing the sequence to come to an end in a reci-
tation aimed at fostering group solidarity. The phrase—
“We are here because someone in our family has a mental
illness”—underscored what was expected of a group of
loyal, disciplined participants, and by implication, of those
who now had an (unspoken) moral obligation to one
another because they were in similar situations.
It was important that participants recognize their com-
monalities as children of mentally ill parents to perform
well in the group. Because the children were assumed to be
reluctant to attend the group, the facilitators perceived their
responsibilities to be managing the children’s negative
reactions. A significant management strategy involved a
group drawing activity that highlighted the importance of
understanding that as children of mentally ill parents, “We
are all in the same boat.” As the children named things they
had in common, Martha added their statements to the pic-
ture of a boat that Colin had drawn on an easel at the front
of the room. These words and the image itself worked
together in a powerful way because of the dramatic claim
made on individuals to see themselves as belonging, and
“not alone,” in addition to being family members of some-
one with a mental illness. The image dramatized a more
implicit idea about a shared identity whereby (loyal) group
members would see that because they faced similar chal-
lenges, they could depend on one another and learn to
work together to successfully manage their problems. This
idea was reinforced during games played by participants,
games in which no one was a winner, reminding the chil-
dren that they played for the same team.
Although no one mentioned it at the time, a review of
the photographic field notes showed that Colin had added
a graffiti-like detail to this image, in effect relabeling the
boat the “Titanic.” Colin and the other children would have
recognized the Titanic as a familiar cultural symbol
because the ill-fated ship was the subject of a popular
American film at the time of the study. It seemed to us that
Colin used this image ironically to publicly (although non-
verbally) and perhaps politically express difficult emotions
about a situation he might have considered hopeless.
Although he might have accepted that as children of men-
tally ill parents they were now “in the same boat,” they
were not much better off if that boat was sinking.
Discussion
Humor: The Art of Managing Dramaturgically
Stressful Situations
Critical dramaturgy allowed us to see how participants
managed expectations of being children of mentally ill
parents and of talking about mental health and illness that
was risky. Like other children living within stressful cir-
cumstances, the participants used humor to reduce
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Gladstone et al. 1177
tensions, build rapport, and cope with complex emotions
in a group context (Brewer & Sparkes, 2011). Although
undertheorized in Goffman’s work (Paolucci &
Richardson, 2006b), humor is comparable to his notion of
a “disguise,” which allows for the introduction and man-
agement of difficult ideas and emotions by revealing
more than they hide:
Given the dangers of expression, a disguise may function not
so much as a way of concealing something, but as a way of
revealing what may be tolerated in an encounter. We fence
our encounters in with gates; the very means by which we
hold off part of reality can be the means by which we can
bear introducing it. (Goffman, 1959, p. 136).
Humor is useful in face-to-face encounters that are
expected to be orderly: “As a metaphorical, symbolic,
paradoxical construction [humor] is capable of convey-
ing powerful messages. In this sense, humor in interac-
tion means more than what it says” (Fine, 1984, p. 97,
emphasis in original); for example, carrying “weighty
messages about what is expected from oneself and oth-
ers” (Hollander & Gordon, 2006, p. 194); calling for an
immediate response from others, although its meaning
can be denied without the speaker “losing face” (Fine); or
communicating inappropriate or taboo ideas in dramatur-
gically stressful situations where performers have to keep
up appearances inconsistent with what they might be
feeling (Freund, McGuire, & Podhurst, 2003). The
implicit meaning is comprehensible because humor is
rooted and comprehended in a particular context; it has
power in group contexts because it is embedded, interac-
tive, and referential (Fine & De Soucey, 2005).
Participants in the Children’s Group used humorous
cultural references that were part of what they knew
about mental illness and what it means to be a child of a
mentally ill parent, without knowing one another prior to
the program. Children used humor to identify with each
other, make claims on one another, and challenge ideas
and beliefs without saying anything too explicit. This
became a basis for developing a kind of “joking culture”
that helped to smooth group interaction, share affiliation,
and secure the compliance of group members (Fine & De
Soucey, 2005).
Managing Expectations About Being “All in the
Same Boat”
Children used irony and simple jokes to “hold off part of
reality” while simultaneously challenging beliefs about
being “in the same boat” (Goffman, 1959). This strategy
aided our understanding about the children’s responses to
the group and what was most (in)tolerable for them in this
encounter. Eliot avoided revealing what he really thought
about attending the group, and this allowed others to
implicitly question the motivation for the group. The chil-
dren had to understand what was (not) being said about
why they were there, at least enough to appreciate the
incongruity of Eliot’s remark (Sen, 2012), and why “bak-
ing a chocolate cake” was funny in these circumstances.
The joke interrupted the facilitators’ script to introduce
ideas that could not be said more seriously. Unlike “bak-
ing a chocolate cake,” attending the group and talking
about the real reason they were there might not have been
innocuous, easy, or desirable.
Eliot’s manipulation might have signaled his reserva-
tions about the group, and perhaps also his seeking con-
firmation of what the other participants were thinking and
feeling. He accomplished this without exposing his feel-
ings about being in the Children’s Group or about having
a parent with a mental illness. Eliot’s joke allowed him to
subtly and safely indicate his understanding of the real
and emotionally charged reason they were there. Had
Eliot been directly challenged by the facilitators, or
poorly received by the other children, he could have
retreated from these implications under the cover that he
was only joking.
Eliot’s response created conditions for the group to
function together. When the others laughed along with
him, they appeared to acknowledge a mutual understand-
ing of what they had in common—in the things not said.
This tacit acknowledgment suggested the acceptance of a
moral obligation to one other, to keep one another’s
secrets by expressing things discretely and not staging
their own individual show (Goffman, 1959). Another
instance of using humor and irony to manage risk within
the group was Colin’s addition of “the Titanic” to the boat
drawing as a way of questioning the hopelessness of their
situation. Although the lifeboat he added might have sig-
naled a desire to escape (from the Children’s Group spe-
cifically or the situation more broadly), it also conveyed
potential feelings of futility about the future. To our
knowledge, these added details went unnoticed at the
time, which made us think of Colin’s reinscription as a
type of graffiti, a form of communication about some-
thing serious that was also subversive and ironic (Rahn,
2002).
Graffiti marks territory and signifies group affiliation,
and this interpretation helped us think about what Colin’s
actions and words allowed him to express. He claimed
this territory of being “all in the same boat” for his own,
adding his critique to those things that Martha had
directed the group to include and identify with each other.
His subversive actions were humorous and enabled Colin
to talk about an emotionally difficult idea without risking
a more serious, explicit conversation. Although it allowed
him a degree of power over Martha’s definitions of their
situation, he did not have to challenge her openly. And
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1178 Qualitative Health Research 24(9)
because none of the players knew each other very well at
this stage of the performance, his statement had to speak
for itself without confronting anyone or demanding a
response from the others.
This incident gained significance because Colin came
to identify with the group by the end of the program,
acknowledging that his mother had a mental illness. Colin
did not seem convinced so much by educational material,
or by the medical language he was coached repeatedly to
use, but by his growing sense of belonging to the group.
Peer support might have been more beneficial than actual
educational content because mutual understanding based
on shared experience has been described as less judgmen-
tal and more socially inclusive (Hayman, 2009). A shared
understanding might have helped Colin identify with
mental illness as a reasonable explanation for some dif-
ficulties. Toward the end of the program Colin com-
mented, “I didn’t know there were so many kids like
us . . . like me.” His response hinted at a possible tension
between identity claims we make for ourselves and those
that are made for us. Choosing to belong, to be “in the
same boat” in the way Colin seemed to do over the course
of the program, is not the same as having an identity
ascribed by others (Gladstone, Boydell, & McKeever,
2006). Making a choice implies a process of exploration
and decision making that contrasts with discriminatory
and marginalizing practices in which labels are likely to
engender a sense of powerlessness (Bottrell, 2009;
Wexler, Difluvio, & Burke, 2009).
Interactional processes and the discourses that under-
pin them challenge our conception of how identities
might be reframed or reimagined by participation in sup-
port groups (Francis, 1997), and in whose interest that
redefinition is enacted. Wexler and colleagues (2009)
argued that group affiliation can provide young people
with a stabilizing resource, a shared platform from which
to reconceptualize personal difficulties as politicized
struggles, making a case for personal/collective meaning
making as part of resilience research in public health. But
group affiliation by way of the Children’s Group was
time limited, with an agenda to change individuals’ per-
ceptions of themselves as responsible only for managing
their own future.
Participants were discouraged from turning to peers
for support outside the group, which culminated in a vol-
atile disagreement with the facilitators about why, as
Augusto demanded, “friends don’t count.” Others have
raised the issue of peer support and whether fostering in-
group relationships occurs at the expense of helping chil-
dren develop and maintain naturally occurring, external
social networks (Maybery et al., 2005). The children
talked about significant friendships outside the Children’s
Group, but did not know how to discuss problems related
to mental illness. Most felt guilty about keeping their
group involvement a secret, and expressed a desire to tell
particular friends about their experiences.
This seemed a lost opportunity to talk about stigma
and discrimination and to support the children in talking
with peers outside the group. Our observations ended on
the last night of the program, and we cannot know how,
or if, being “in the same boat” had a longer-term impact
on children’s lives. There was no formal provision to help
children keep in touch. Children told us that they were
excited to return to their everyday lives, to watch favorite
television shows again, to do their homework without
scheduling conflicts, and to talk to friends. They might
have wanted to limit contact with each other, too, for rea-
sons we could only speculate about, although all partici-
pants said that what they would miss most about the
Children’s Group was seeing one another.
Resilience-building interventions similar to the group
we studied focus on shifting how individuals see them-
selves, often by constructing new identities, literally
replacing old “self-stories” with new ones (e.g., Ungar,
2004). However, there is a danger of support groups rep-
licating social inequalities and exacerbating existing
power differentials if discourses define these situations
without reference to power and in ways that result in
inequities (Holden & Schrock, 2007). This is more likely
when education and support activities like those of the
Children’s Group conceptualize the responsibility for
change only at the individual level.
Fjone, Ytterhus, and Almvik (2009) have argued that
children’s private problems should be a matter of public
concern; for example, by changing environments so that
schools and other social services become more accepting
and tolerant of what is considered normal. Others have
argued for a shift in social responsibility over how we
understand and expect children to manage difficult cir-
cumstances. Bottrell (2009) argued “that interventions for
resilience building need to recognize the embeddedness of
resilience in social inequities, social processes and the dif-
ferentiated societal and ideological expectations of young
people” (p. 321). Disadvantaged young people who resist
particular labels might be enacting a form of resilience
that is actually protective but hasn’t been interpreted as
such in theorization about resilience (Bottrell).
When most of the children told us at the end of the
Children’s Group sessions that they still thought they
could help their ill parent, despite being instructed to
believe otherwise (and however much they prevaricated
by stressing that they knew the rules about only being
able to “cope with it, but not control it”), we considered
whether their responses could be reframed as a form of
resistance to normative expectations about appropriate
parent–child relationships. There is a tension in the litera-
ture between children’s desire to remain deeply con-
nected to their parent and their desire to develop a separate
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Gladstone et al. 1179
sense of self (Mordoch & Hall, 2008), to help at home
and express their own needs for support (Griffiths, Norris,
Stallard, & Matthews, 2012). Similarly, parents with
mental illness describe reciprocal caring relationships
that involve moral dilemmas and complex emotions
because of the normative expectations associated with
appropriate parent–child relationships (Tjoflat & Ramvi,
2013; Van Parys & Rober, 2012). We suggest that changes
in current practice and policy could support Mark’s grow-
ing independence and competence and his desire to take
some responsibility for caring for his family, rather than
being pathologized (and labeled “parentified”) for worry-
ing about his parent.
Implications for Research, Policy, and
Practice
Canada’s new mental health framework is similar to other
jurisdictions that stipulate the inclusion of individuals
with lived experience of mental illness and their families
in planning, organizing, and evaluating how health ser-
vices and support are developed and delivered (Mental
Health Commission of Canada, 2012). However, although
family likely refers to parents, we argue for broadening
the narrow but powerful way we frame children’s roles to
consider their lived experiences and specific educational
and support needs when a parent has a mental illness.
Children contribute to the health and well-being of oth-
ers, and should be recognized for their efforts and sup-
ported in ways they find meaningful, not the least because
this will influence their own well-being (e.g., Van Parys
& Rober, 2012).
To develop a mental health system that emphasizes
family centered care requires ongoing critical examination
of the ways dominant ideas lead to discriminatory attitudes
and the inequitable distribution of power (McNeil, 2013).
Careful consideration must be given to the benefits and
limitations of dedicated peer-support groups and those that
integrate psycho-education and support services for chil-
dren and their parents (Cowling & Garrett, 2012; Foster,
O'Brien, & Korhonen, 2012; Pihkala, Sandlund, &
Cederstrom, 2011). A significant caveat is to ensure that
newly emerging policies, practices, and research in this
field do not disenfranchise children further by reproducing
situations in which they are not listened to or recognized
for their contributions to the family.
Support groups can help children learn how to better
manage relationships that are important to them, and chil-
dren would benefit from learning how to talk about their
experiences with those whom they value outside dedi-
cated forums like the Children’s Group. Reframing chil-
dren’s goals this way does not discount their need for
practical and emotional support, especially if we acknowl-
edge that helping children cope better on their terms will
involve removing structural and discursive barriers that
are difficult to change. Actual changes in systems of
knowledge, beliefs about mental health/illness, and how
we think about ways of being a child (and ways of being
an adult) require a shift in thinking, as well as changes in
children’s material circumstances.
The results of our study lead us to suggest, “All knowl-
edge is [not necessarily] power.” Information should be
evaluated to determine how talk about current mental ill-
ness educational content is helpful to children (Reupert &
Maybery, 2009). This discourse obscures troublesome
contradictions in current understandings about the real
nature and consequences of mental illness and the ten-
sions between competing and often polarized explanatory
claims about mental illness as purely a biomedical or
social problem.
Based on the results of our study, we question what
appropriate educational content is for children of men-
tally ill parents, including whether content can or should
be standardized, and how decisions should be made and
who should make them about what constitutes optimal
mental health education. We also question the most
appropriate context for communicating information. In
contrast to Pihkala and colleagues’ (2011) evaluation of a
family focused (and parent-led) model of psycho-
education, the participants in our study demonstrated an
understanding of their parents’ problems and of their
own, which they managed in their interactions with peers
and the adult facilitators. Whether this approach was
more beneficial requires further evaluation. Mark did talk
about sharing his new knowledge with family members,
and although other participants did not talk about this,
most wanted some guidance on how they might talk to
their peers outside the group. Children did not seem
relieved or freed from excessive worry or responsibility
by being better educated from a biomedical perspective
(Pihkala et al.); however, the children did respond when
invited to talk about their own experiences and what
might be helpful and why.
Participants’ motivations to learn more might have
been in conflict with beliefs about what is best for chil-
dren. One way to address this would be to take different
kinds of knowledge into account (Boydell, Gladstone, &
Crawford Stasiulis, 2002); for example, by considering
how children’s understandings differ from those of adults
who want to help but often end up qualifying children’s
knowledge as deficient and in need of change (Alasuutari
& Jarvi, 2012).
Although children might be reluctant to ask explicitly
for information, the participants in our study were adept
at asking questions, critiquing information, and question-
ing the relevance of educational material in strategic
ways that were emotionally safe. These strategies might
not have been necessary had the children been asked
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1180 Qualitative Health Research 24(9)
more directly about their circumstances, what they
wanted or needed to learn about the illness, and what was
happening more generally to them and their family. How
children understand their situations could inform deci-
sions about what constitutes good mental health literacy.
How they construct and use alternative concepts is useful
for thinking about developing and implementing educa-
tion activities and support practices (Alasuutari & Jarvi,
2012; O'Reilly, Taylor, & Vostanis, 2009).
Finally, we recognize that our study is part of an ongo-
ing process of constructing knowledge about children of
parents with mental illness. Our epistemological
approaches contribute to how we understand mental
health/illness and characterize children and childhood
according to particular discursive formulations. Discourse
analysis can lead to “a self-referential circular process in
which a text is produced by analyzing a text and the pro-
cess goes on” (Crowe, 2005, p. 62). One way to mitigate
this risk is to test our analysis as a new set of assump-
tions, to consider how, or if, it is meaningful and conse-
quential in other interactive settings. This would include
other psycho-education and support groups with goals
comparable to those of the Children’s Group (e.g.,
Riebschleger et al., 2009). Readers might also judge
whether study results are transferable to other contexts
where children have a parent with a chronic illness and/or
disability that requires education and support, and a par-
ent or family that might also be considered different.
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect
to the research, authorship, and/or publication of this article.
Funding
The authors disclosed receipt of the following financial support
for the research, authorship, and/or publication of this article:
Support was received from the Canada Graduate Scholarship
Program of the Social Sciences and Humanities Research
Council of Canada, and a Graduate Award from the Ontario
Centre of Excellence for Child and Youth Mental Health (Grant
number 6A-262). The views expressed do not necessarily reflect
those of supporters or funders.
Note
1. All names used are pseudonyms.
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Author Biographies
Brenda M. Gladstone, PhD, is an assistant professor at the
Dalla Lana School of Public Health, University of Toronto, and
SickKids Foundation/Canadian Institutes of Health Research
New Investigator, SickKids, Toronto, Ontario, Canada.
Patricia McKeever, RN, PhD, is a professor at the Lawrence S.
Bloomberg Faculty of Nursing, University of Toronto, and
senior scientist, Holland Bloorview Kids Rehabilitation
Hospital, Toronto, Ontario, Canada.
Mary Seeman, MDCM, FRCPC, DSc, is a professor emerita in
the Department of Psychiatry, University of Toronto, in
Toronto, Ontario, Canada.
Katherine M. Boydell, MHSc, PhD, is a professor in the
Departments of Psychiatry and Dalla Lana School of Public
Health, University of Toronto, and senior scientist, SickKids, in
Toronto, Ontario, Canada.
by Mary Seeman on August 13, 2015qhr.sagepub.comDownloaded from
... After providing informed consent, participants completed a survey which gathered demographic information and data about their expectations and reasons for taking part. Participants were advised of areas within the building they could move to if they wanted to step out of the observational space (Gladstone et al., 2014). ...
... Stereotypes portray them as being lazy, immature, disorganised, moody, disruptive, ignorant, and lacking in knowledge and experience (Kelly, 2018). However, researchers have also recognised young people to be socially competent and engaged, capable of contributing to new knowledge production and dissemination (Boydell et al., 2017;Gladstone et al., 2006Gladstone et al., , 2011Gladstone et al., , 2014, and our experience aligns with this latter description. We made it clear that the researchers wanted to learn from the young people in our co-design project. ...
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Little is known about the experience and impact of intersectional stigma experienced by rural young people (15–25 years) who have a parent with mental health challenges. The StigmaBeat project employed a co-design approach to create short films to identify and challenge mental health stigma from the perspective of young people who have experienced this phenomenon. The aim of this paper is to describe the co-design methodological approach used in StigmaBeat, as an example of a novel participatory project. We describe one way that co-design can be employed by researchers in collaboration with marginalised young people to produce films aimed at reducing mental health stigma in the community. Through describing the processes undertaken in this project, the opportunities, challenges, and tensions of combining community development methods with research methods will be explored. Co-design with young people is a dynamic and engaging method of collaborative research practice capable of harnessing lived experience expertise to intervene in social issues and redesign or redevelop health services and policies. The participatory approach involved trusting and implementing the suggestions of young people in designing and developing the films and involved creating the physical and social environment to enable this, including embedding creativity, a critical element to the project’s methodological success. Intensive time and resource investment are needed to engage a population that is often marginalised in relation to stigma discourse.
... Furthermore, childhood exposure to violence has a negative impact on self-esteem, peer relationships, academic performance and social competence, and translates into a high lifetime risk of mental health problems (Duke et al., 2010;Lippard and Nemeroff, 2020). It is estimated that 10-20% of children grow up in families with parental mental ill-health (Gladstone et al., 2014), and that more than 67% of women and over 75% of men with serious mental illness are parents. The most commonly mentioned parental mental illness factors that have a negative impact on child development and functioning include parental preoccupation/emotional unavailability due to illness, inappropriate emotional reactions directed at the child, and disturbed parental behaviour interfering with parent-child interaction. ...
... The majority of research reporting links between ACEs and negative mental health outcomes has focused on adults. (Gladstone et al., 2014), a ponad 67% kobiet i ponad 75% mężczyzn z poważnymi chorobami psychicznymi jest rodzicami. Wśród czynników, za sprawą których zaburzenia psychiczne rodziców mają negatywny wpływ na rozwój i funkcjonowanie dzieci, wymienia się przede wszystkim: zaabsorbowanie rodziców/niedostępność emocjonalną spowodowaną chorobą, niewłaściwe reakcje emocjonalne ukierunkowane na dziecko i zaburzone zachowanie rodzica zakłócające interakcję rodzic-dziecko. ...
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Adverse childhood experiences encompass different forms of abuse (physical, emotional, sexual abuse, neglect), household dysfunctions (e.g. mental disorders, substance abuse) and social challenges (e.g. poverty, ethnic discrimination, community or school violence). All these factors contribute to the life-long risk of mental health problems, including mental disorders, suicidal behaviour and self-harm. Children and adolescents exposed to various forms of adverse events are more than four times more likely to develop mental disorders already before adulthood and to suffer from psychopathology that will persist into adulthood. The majority of research on the relationships between adverse childhood experiences and mental disorders have been conducted among adults and assessed the role of isolated factors. Therefore, it seems reasonable to assess the impact of adverse childhood experiences on the functioning of children and adolescents, with particular emphasis on at least several co-occurring factors related to both abuse and household dysfunctions. The most commonly considered theoretical concept of the origin of disorders, i.e. the diathesis–stress model, emphasises the role of interaction between genetic predispositions and environmental factors, assuming that a combination of individual predispositions and exposure to stress arising from adverse events increases the risk of psychopathological symptoms. In turn, contemporary mental health models take into account the role of mutual interactions between risk factors and protective factors, as particularly reflected in the concept of resilience. More recent approaches point to the dynamics of relationships between adverse childhood experiences and mental disorders, and at the same time to the limitations of inference from the available research.
... This fostering of group identity can help to mitigate stigma, decrease isolation and enable a sense of belonging. The frame has thus enabled opportunities to promote equity, focusing attention on the needs of families, parents and children, which in turn has provided the foundation for numerous peer support programs (22,23) as well as other well-received and respected interventions. Mental health awareness campaigns and the vulnerability and risk frame have led to increased service demand and sector justification. ...
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To elicit compassion and communicate urgency to policy makers and governments, researchers and program developers have promoted a narrative of vulnerability and risk to frame the experience of families when parents have been diagnosed with mental illness. Developed within a western medicalised socio-cultural context, this frame has provided a focus on the need for prevention and early intervention in service responses while also unintentionally ‘othering’ these families and individualizing the ‘problem’. This frame has had some unintended consequences of seeing these families through a deficit-saturated lens that misses strengths and separates family members’ outcomes from each other. This paper raises questions about the continued fit of this frame and suggests a need to reimagine a new one.
... There is abundant empirical evidence for a profound impact on these children (e.g., Leijdesdorff et al., 2017), both at the level of their individual functioning and interpersonal functioning. Children of parents with a mental illness (COPMI) are in particular at risk for developing cognitive, emotional or behavioral difficulties themselves (Göpfert, 1996;Gladstone et al., 2014) or having mental health problems as a child and/or in later life (Leijdesdorff et al., 2017;Brummelhuis et al., 2022). Although results vary between studies, a meta-analysis indicated that up to 55% of the offspring of parents with a serious mental illness (e.g., schizophrenia, major depression, bipolar disorder or severe borderline personality disorder) develop a mental illness themselves (e.g., depression, anxiety, disruptive disorder) and are therefore 2.5 times more at risk compared to children of healthy parents (Rasic et al., 2014). ...
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Objectives A systematic review was conducted to (1) investigate protective factors enhancing resilience in children of parents with a mental illness (COPMI), and (2) examine theoretical and methodological issues in the existing literature. Method Following guidelines for systematic reviews, searches were performed using Web of Science, Pubmed and Embase. After screening 5,073 articles 37 fulfilled inclusion criteria and were extracted for review. Results of the present review indicate that there are several ways to help build resilience in COPMI. More specifically, five protective factors emerged from the reviewed literature: Information, Support, Family functioning and Connectedness, Child coping, and Parenting. Discussion Research on protective factors in children confronted with parental mental illness is still scarce and for some factors no clear conclusions can be drawn based on the available evidence. To further our understanding of the building blocks and underlying mechanisms of resilience in COPMI, additional rigorously designed studies are needed.
... A further source of complexity can be seen in the stereotype content that undergirds the deflation of the young peoples' testimonial credibility-the content of prejudicial beliefs that enables and supports the denigration of their credibility. Here, we can see forms of discreditation and credibility deflation due to a specific status, being a child of a mentally ill parent whose childhood is presumed to be difficult, risky and pitiable (Gladstone et al., 2006), leading to assumptions that undermine young people's insights into and capacities for reflection on their experiences and needs for support (Gladstone et al., 2014) (this suggests an alignment with what Hookway (2010) identified as informational prejudice as a subtype of testimonial injustice). ...
Article
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Amongst the impacts of growing up with a parent with mental health challenges is the experience of stigma-by-association, in which children and young people experience impacts of stigmatisation due to their parent's devalued identity. This article seeks to expand our understanding of this issue through an abductive analysis of qualitative data collected through a codesign process with young people. Results indicate that young people's experiences of stigmatisation can be effectively understood as experiences of epistemic injustice. Participants expressed that their experiences comprised 'more than' stigma, and their responses suggest the centrality to their experiences of being diminished and dismissed in respect of their capacity to provide accurate accounts of their experiences of marginalisation and distress. Importantly, this diminishment stems not only from their status as children, and as children of parents with mental health challenges but operates through a range of stigmatised identities and devalued statuses, including their own mental health status, sexual minoritisation, disability and social class. Forms of epistemic injustice This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
... Whilst the studies in the integrative review were mainly from North America, Europe and Australia, the study presented here is the first to include primary data from sub Saharan Africa. The fear of stigmatisation may explain why parents limit communication about their mental illness with children [15,39]. Furthermore, parents may not tell HCPs that they have children; reasons for non-disclosure by parents include the fear of losing custody of their child(ren) or increasing their family's vulnerability to stigma [40,41]. ...
Article
Full-text available
Background Given that common mental disorders are one of the leading causes of disease burden worldwide, it is likely that many children are growing up with a parent or other adult within their family who has anxiety or depression. Parents with a mental illness may not consider it appropriate to discuss their illness with their child, and consequently an absence of communication may lead to stigmatization, shame, misunderstanding their parents’ symptoms, and even blaming themselves. There is a scarcity of research exploring the experiences and perceptions of healthcare professionals about communication with children of parents with mental illness in low-resource and African contexts. Methods A qualitative study using semi-structured interviews with healthcare professionals ( n = 15) was conducted within the Bushbuckridge sub-district of Mpumalanga Province, South Africa. Data were analysed using Thematic Analysis. Results Four themes were identified relating to the obstacles around communication with children. These included: (1) finding an appropriate language to describe mental illness, as well as the prevailing cultural explanations of mental illness (2) the stigma associated with mental illness (3) the perceived role of children in society and (4) mental health services and staff skills. Two themes that addressed facilitators of communication about parental mental illness were identified: (1) the potential to increase mental health awareness amongst the broader community through social media, the internet, and general psychoeducation (2) healthcare professionals’ concerns for the wellbeing and future mental health of patients’ children, as well as their hopes for increased mental health awareness amongst future generations. Conclusions This study provides insight into healthcare professionals’ attitudes and perceptions about talking to patients and families within their community about mental illness. The results provide recommendations about possible ways to promote sharing information about a parent’s mental illness with children at an individual and community level. Future research should focus on the collaborative creation of culturally sensitive psychoeducational resources and evidence-based guidelines. This must be supported by systemic and organisational change in order for professionals to successfully facilitate conversations with patients who are parents, and their children.
... Some studies also report that the specific protocol and the manual were followed (e.g. Goodyear et al., 2009;Gladstone et al., 2014). Alternatively, basic inspiration can be found in manuals for groups with similar focus but different populations (e.g. ...
... Numa área geográfica diferente, Canadá, Gladstone e colabores analisaram um programa psicoeducativo de oito semanas, The Children's Group, dirigido a crianças de idade escolar. O programa tinha como foco a educação sobre doença mental, mas também a expressão de sentimentos difíceis sobre ser filho de pessoas com doença mental, tendo o recurso ao humor sido essencial para atingir esses objetivos (Gladstone et al., 2014) Uma outra intervenção focada na família foi desenvolvida na Holanda e difundida para outros países -Child Talks (Kristensen et al., 2022;Reedtz et al., 2019;. É uma intervenção breve, desenhada para ser oferecida pelos profissionais de saúde mental de adultos a todos os pais com doença mental e/ou uso de substâncias psicoativas, que consiste em três conversas psicoeducativas com os pais e os seus filhos, uma delas conjunta, para abordar o diagnóstico de doença mental e o funcionamento da família. ...
Article
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A literacia em saúde mental é fundamental em qualquer população e faixa etária, mas os estudos têm evidenciado que os seus níveis são globalmente baixos. Tal também se verifica nos filhos de pessoas com doença mental, um grupo de elevado risco pela exposição diária a stressores psicológicos, biológicos e sociais, os quais aumentam o risco para o desenvolvimento de perturbações mentais bem como de medos e dúvidas específicos. Apesar disso, as necessidades singulares deste grupo são muitas vezes subvalorizadas ao nível da comunidade geral, escolar, serviços especializados de saúde mental e estudos científicos, pelo que o nosso objetivo consistiu na identificação e descrição de programas de intervenção na literacia em saúde mental dirigidos a esta população através de uma revisão narrativa da literatura. A nível internacional, existem vários programas que diferem no tempo dedicado a cada um dos componentes da literacia em saúde mental, no público-alvo e no desenho do programa. Em Portugal foram identificados dois programas específicos, “Semente” e “Gente Feliz com Lágrimas”, que permitem a identificação destas famílias em risco e o aumento da literacia em saúde mental nas mesmas e nos profissionais de saúde.
... having parents with a similar illness) are better able to understand what each other are going through and can offer support in a number of ways [39,40]. Moreover, during group sessions, children can learn how to better manage relationships that are important to them and can benefit from learning how to talk about their experiences with those whom they value [41]. One study identified that, by participating in groups and sharing their experiences, children feel a genuine sense of connection; they also gain information from their peers about how others have tackled the situation [39]. ...
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Background There are a substantial number of children who are the next of kin of parents suffering from illness or substance abuse. These children can experience emotional and behavioral problems and may need support from professionals. In Norway, the specialist health service in hospitals is required to have a designated practitioner in each department to ensure support for and follow up of children who are next of kin; however, this is not regulated by law in the health care in the municipalities. The aim of this study was to explore public health nurse’s experiences working with children who are next of kin. Methods Qualitative interviews were conducted with 10 public health nurses working in the child health clinic and the school health service in four municipalities. Data were analysed using content analysis. Reporting of this study is conducted in accordance to COREQ’s checklist. Results The analysis resulted in one main theme: ‘Lack of guidelines and routines among public health nurses working with children who are next of kin’. The main theme consisted of four categories: (1) identifying children who are next of kin are incidental; (2) public health nurses must be observant and willing to act; (3) communication is an important tool; and (4) follow up over time is not always provided. Conclusion The public health nurses experienced uncertainty concerning how to identify and follow up children who are next of kin but were vigilant and willing to act in the children’s best interest. Doing so necessitated collaboration with other professionals. The need for guidelines around the role and responsibilities for the public health nurse were emphasized. The knowledge provided by the current study offers valuable insight into strengths and limitations in the support of children who are next of kin and can inform stakeholders in organizing sustainable support for this group.
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Background: There is a significant risk of negative outcomes for families when a parent experiences serious mental illness. Family-focused practice (FFP) emphasises the "whole family" as the unit of care and has been found to improve outcomes for service users and their families. Despite its benefits, FFP is not routinely implemented in UK adult mental health services. This study explores adult mental health practitioners' experiences and views of FFP within Early Intervention Psychosis Services in the UK. Methods: Sixteen adult mental health practitioners employed in three Early Intervention Psychosis teams in the Northwest of England were interviewed. Interview data were analysed using thematic analysis. Results: Five core themes were generated: (1) A limited understanding of FFP, (2) Our practitioners, (3) Our approach, (4) Our families and (5) Our services. Practitioners' understanding of FFP was limited and typically excluded dependent children. Practitioners' age, professional and personal experience, and preconceptions of families influenced delivery, and in turn, the engagement approach they adopted impacted families' responsiveness. The diversity and dynamics of service user families such as age, socioeconomic status, culture and stigma impacted FFP. An operational context characterised by insufficient resources reduced FFP; however, organisational structures such as leadership, clinical supervision and multi-disciplinary teams facilitated FFP. Conclusions: FFP is not yet embedded within Early Intervention Services. Practice recommendations include agreeing on a formal definition of FFP and its scope; the development of FFP policy; clarity in relation to staff responsibilities and identities; the adoption of a collaborative approach which encourages service user choice and for time to be ring-fenced to prioritise FFP. Future research should ascertain service user and family views on the facilitators and barriers to engaging with FFP in Early Intervention Services.
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This article aims at achieving insight into acquiring an understanding of parenting while dealing with one's own bipolar disorder. It is based on results from in-depth interviews of six parents with bipolar disorder, and analyzed using guidelines from interpretative phenomenological analysis (IPA). The results from the study suggest the parents experienced diverse, complex, compound, and demanding challenges. However, the results also highlighted the fact that parents went through a “change and growth” process, in which they developed an experience-based competence perceived as being useful due to their living situation, including the strengthening of their parenting function and their personal recovery process. Aspects about how the time dimension in recovery, as well as how parents' dependence on their children can play both a central and paradoxical role in their lives, are discussed, which is then followed by implications for the support system.
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This ethnographic study demonstrates the process by which our emotions are constructed not only by ourselves but also by others. Support groups for divorce or bereavement are used to illustrate the process of interpersonal emotion management. The study considers how support groups with differing ideologies produce dissimilar situational definitions for the loss of a spouse. Each of these definitions promotes different cognitive and effective outcomes for the participants. Despite these differences in definitions, the group leaders use a largely identical process of interpersonal emotion management, in which they redefine not only the event of spousal loss but also the sufferer's very identity. These redefinitions encourage understandings and emotions that coincide with the groups' own idelogical perspectives. In addition, the results of the study are unexpectedly congruent with affect control theory, thus demonstrating that the propositions of this theory inform qualitative as well as quantitative research.
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In this article, we look at children's experiences of parentification in families in which one of the parents is hospitalized for depression. Children (7-14 years old) and their parents were invited for a family interview. Using thematic analysis, we constructed a general framework of 14 children's experiences, guided by the explorative research question: How do children experience parental depression and how do they experience their own caregiving in the family? The thematic analysis revealed eight themes. One of these themes (trying to comfort the parent) was selected for a microanalysis in one family interview. Our study illustrates the process of overt negotiating of caretaking between parent and child with an underlying moral dilemma and related emotions. The dynamic of children hiding their worry can be seen as an answer to the parent's expressed wish to not burden her children. These dynamics are situated in ongoing debates in family therapy literature, and some suggestions for therapeutic practice are formulated.