Aggressive Children With Mental Illness: A Conceptual Model of Family-Level Outcomes

Abstract

The purpose of this research was to examine how families adapt and respond to an aggressive child with mental illness. This article presents findings from a qualitative study of four families, which were selected as typifying the experiences of a larger sample of 14 families; each family included a child with mental illness and a history of violent behavior. The analysis revealed a five-stage pattern in how families perceived and responded to victimization and their child or sibling’s mental illness. The study suggests that families with a violent child with mental illness and other healthy children cannot live through episodes of violence without removing the child with mental illness from the home or suffering considerable damage to the family. The article concludes with recommendations for mental health practitioners and family intervention specialists.

Keywords

mental health and violence violence exposure youth violence

Family violence has been a significant topic in family, criminological, and victimization research for decades. There is extensive documentation of the negative outcomes of family violence, particularly outcomes associated with intimate partner violence and child abuse. Yet research on family violence in which the perpetrator is a child with mental illness (CMI; for example, a CMI assaulting a parent or sibling) is often neglected (Labrum & Solomon, 2017; Phillips, Bowie, Wan, & Yukevich, 2018; Solomon, Cavanaugh, & Gelles, 2005).

Since deinstitutionalization in the 1950s and 1960s, family members have assumed a major role in providing caretaking for their loved ones with mental illness. Given this fact, it is not surprising that family members are more likely than strangers to fall victim to the most severe violent behaviors, including serious and fatal injuries (Binder & McNeil, 1986; Nordström & Kullgren, 2003). Some research estimates that 50% to 60% of violent behavior is directed at family members when individuals with mental illness are psychotic or abusing substances (Estroff, Swanson, Lachicotte, Swartz, & Bolduc, 1998; Link & Stueve, 1994; Swanson, 1994). While little research has investigated familial responses to violence perpetrated by children or siblings with mental illness, recent scholarship in victimology has investigated violent behavior among both children and adults with mental illness. First, Phillips and colleagues (2018) examined violence among inpatient children (ages 5-12) with serious mental illness. They identified 76% of the children as perpetrators of sibling violence; the children also had a history of directing harm toward themselves and others (i.e., peers, mothers, teachers). In a second study, Labrum and Solomon (2017) examined rates of victimization among 573 adults with an adult relative with psychiatric disorders. Almost half of their sample (47%) reported being the victim of their relative’s violent outbursts, and 22% of these family members were victimized in the past 6 months. Researchers have also identified risk factors for family members resulting from aggression by individuals with mental illness, including over-involvement by family members, dependency of the ill member on a family caregiver, and persuasive or coercive limit setting (Bebbington & Kuipers, 1994; Solomon et al., 2005; Straznickas, McNiel, & Binder, 1993).

Only recently have researchers begun to explore how families cope with violence by a family member with mental illness (e.g., Band-Winterstein, Avieli, & Smeloy, 2016; Labrum & Solomon, 2017). Band-Winterstein and colleagues (2016), for example, investigated how parents cope with abusive adult children with mental illness over the life course. The present study continues this investigation of how families cope with this issue. Specifically, this research offers insight into how families adapt and respond to a violent CMI.

Background

Among all persons with mental illness living in the community, researchers estimate that 77% have regular contact with family members (Lehman & Steinwachs, 1998) and 50% live with one or more relatives (Beeler, Rosenthal, & Cohler, 1999). Despite the variety of mental health services and support networks available in communities (e.g., supported housing programs, outreach programs, day treatment, clubhouses), family members assume a major role in the social, emotional, and financial caretaking of the person with mental illness (Slate & Johnson, 2008; Solomon et al., 2005). The emotional burden of such caregiving is significant and is heightened as family members experience a wide range of emotions, including anger, anxiety, confusion, disappointment, embarrassment, exhaustion, fear, grief, loss, powerlessness, and shame (Band-Winterstein et al., 2016; Hyde, 1997; Jackson, 2003; Karp, 2001; Leith & Stein, 2012; Osborne & Coyle, 2002). Furthermore, family members and caregivers must plan for and cope with many stressors associated with the family member’s illness, such as unpredictable behaviors (e.g., aggression), manifestations of any given disorder (e.g., delusions, hallucinations, psychotic behavior, suicidal behavior), and negative personal, emotional, and social outcomes (e.g., confusion, social withdrawal, inability to care for themselves; Bernheim & Leham, 1985). In the following sections, I offer brief summaries of sibling abuse and child-to-parent abuse, what we know about violence committed by violent children with mental illness, and the unique caregiving responsibilities that are needed for children with mental illness.

Sibling Abuse and Child-to-Parent Abuse

Based on previous studies, we know that survivors of sibling abuse and parent abuse by children report a variety of psychological and behavioral problems. In regard to sibling violence, it is commonly accepted that siblings can be aggressive toward each other, but the effects of chronic sibling violence can be devastating to victims and their families. Abused siblings live in fear of future abuse (Hines & Malley-Morrison, 2005; Wiehe, 1997), are immobilized, and are less likely to ask for help (Wiehe, 1997). Victims of sibling abuse experience additional psychological and behavioral problems, including anxiety (Barnett, Miller-Perrin, & Perrin, 2011), depression, drug and alcohol problems, eating disorders, posttraumatic stress disorder, suicidal ideation (Silverman, Reinherz, & Giaconia, 1996), poor self-esteem, and difficulty in interpersonal relationships (Kim, McHale, Crouter, & Osgood, 2007). Sibling violence has a spillover effect on other parts of the family, resulting in problems such as marital discord, negative communication patterns, chaotic family environments, lack of parental involvement, boundary confusion, parental deprivation, lack of parental supervision, and parental neglect (Barnett et al., 2011).

One of the least researched populations in victimization literature is parents who are abused by their children (Routt & Anderson, 2011). Abused parents report a variety of negative outcomes, including shame, social isolation, fear of stigma, and feelings of helplessness. As a result, parents are less likely to seek help outside the family and to care for themselves and other family members (Gelles, 1997; Routt & Anderson, 2011). Mental illness, however, is rarely considered a factor in these types of abusive situations except when it is a characteristic of teens who have killed a parent (e.g., schizophrenia, personality disorders; Cottrell & Monk, 2004; Kethineni, 2004). Slate and Johnson (2008) argued that families are ill equipped to manage the demands and needs of violent family members with mental illness; yet, we still do not understand how a violent CMI affects the family as a whole.

Family Violence, Caregiving, and Mental Illness

Although most persons with mental illness are not violent (Slate & Johnson, 2008; Torrey, 2006; U.S. Department of Health and Human Services, 1999), those who are often direct their violence toward family members and family caregivers. For example, Vaddadi, Gilleard, and Fryer (2002) examined the frequency of verbal and physical abuse of family members (n = 101) by persons with mental illness. Family caregivers reported frequent problems associated with verbal and physical abuse. Specifically, 40% felt threatened by violence at some point, 22% were threatened in the last year, 40% were hit or struck at some point, and 17% sustained a substantial injury. In a second study, Gondolf, Mulvey, and Lidz (1990) investigated emergency room patients awaiting a psychiatric evaluation and found that 36% had assaulted a family member prior to their hospitalization. While these and other studies consider age of the person with mental illness, few have specifically examined younger children with mental illness. In a recent study, Phillips and colleagues (2018) examined sibling violence perpetrated by children between 5 and 12 years old who had been hospitalized in a psychiatric hospital. Psychiatric records showed that 76% of the children with mental illness had perpetrated sibling violence, and many children were also violent toward themselves, parents, and teachers.

Each element in the treatment and caregiving of a family member with mental illness can be stressful, particularly when it comes to psychiatric hospitalization and discharge. Clarke and Winsor (2010) interviewed 10 parents of children recently admitted to their first inpatient psychiatric hospitalization. The parents reported many different emotions, including relief, disbelief, loneliness, stigmatization, and grief. Although parents were relieved that their child was safe and receiving professional support, they also felt shaken by the reality that their child was in a locked ward. The parents reported that poor relationships and negative interactions with mental health staff exacerbated stress and tension, a finding that is consistent with prior research (Ferriter & Huband, 2003; Johnson, 2000; Solomon & Marcenko, 1992). Specifically, the parents did not feel supported by the inpatient staff and were consistently excluded from treatment team and discharge meetings. As a result, the parents reported not being prepared for their child’s return home (Clarke & Winsor, 2010).

Caretaking requires family members to be organized and prepared for problems associated with the mental illness. To name a few, family members become advocates in the treatment of the mental illness (e.g., attending psychiatry and therapy appointments, and treatment team meetings), and must monitor treatment recommendations, such as taking prescribed medications and attending therapy sessions. In addition, caretakers must constantly monitor and prepare for potential increases in symptoms that might lead to aggression, and harm to the self or others (Bernheim & Leham, 1985).

Guiding Theories

To understand how the family experiences a violent CMI, the current research draws from symbolic interactionism (SI; Blumer, 1969) and family systems theory (Cox & Paley, 1997; Hoffman, 1981). SI is a way to view and study human group life. Blumer (1969) identified three core premises to explain how humans respond to and perceive their social world. First, “human beings act toward things on the basis of the meanings that things have for them” (Blumer, 1969, p. 2). Second, meaning, which is key to human group life and behavior formation, is a social product and derives from the interactions we have with others and ourselves. In other words, social processes and human interactions create meaning. Third, we develop, revise, and confirm these meanings as we interact with others and ourselves. Overall, SI assumes human action and interaction to be complex and best understood when directly observed. Following this assumption, the current research relies on individuals’ interpretations of the victimization experience. Specifically, this research examines how the victimization experience affects a person’s individual and group life (i.e., family life).

This research also relies on family systems theory as a basis for understanding the complexities of family dynamics. In recent years, systems theory (Sameroff, 1994), which depicts the family as a working network of complex interactions and exchanges, has been accepted as the dominant theoretical framework for how we understand family functioning (Cox & Paley, 1997; Parke, 2004). Family systems theory allows researchers to view the roles and functions of each family member and subsystem (i.e., parent–child, sibling, marital) as dynamic and interdependent. Rather than reducing family functioning and relationships to linear or unidirectional concepts (e.g., parents affect children), researchers consider these relationships as mutually interdependent and transactional (e.g., parents affect children and children affect parents; (Eichelsheim, Dekovíc, & Buist, 2009; Minuchin, 2002). For example, in place of traditional family research that perceived children as passive recipients of socialization (Kuczynski, 2003), parents and children have equal agency in socialization across the life course (Crouter & Booth, 2003; Kuczynski, 2003). The current research examines how the meanings attributed to the victimization experience affect family members and family relationships.

Method

Participants

This study is drawn from a larger project that investigated individual- and family-level coping strategies of parents and siblings of violent persons with mental illness. The participants in the current study (n = 10) represent four distinct families and are a subset of a larger sample (n = 42) of individuals who self-reported either currently or previously having lived with an aggressive sibling or CMI. Participant recruitment relied on nonprobabilistic sampling strategies (Berg, 2009; Bernard, 1995). The first wave of recruitment focused on social and professional networks, including social media websites (e.g., Facebook) and community-based support programs (e.g., meetings at the National Alliance on Mental Illness [NAMI]). The second wave of recruitment relied on snowball sampling: Participants were asked to refer other family members or acquaintances who might be willing to participate. Each family is described below and pseudonyms are used to protect participant anonymity. The family members with mental illness did not participate in the study due to safety-related concerns for both the family participants and interviewer.

Family 1

The Arbor family includes five family members, Aaron (father, 52), Alicia (mother, 51), Amber (daughter, 27, not interviewed), Arthur (son, 20), and Alex (son, 17). Aaron and Alicia identify their family as being upper-middle class and are all Caucasian. They both agreed that Arthur began exhibiting behavioral issues at age 3 but his aggressive behavior did not escalate until adolescence. Alex has been admitted to psychiatric hospitalizations 10 times. Arthur is diagnosed with a bipolar disorder, psychotic disorder, attention-deficit/hyperactivity disorder (ADHD), and pervasive developmental disorder (PDD). At the time of the interviews, Alex was in high school and living with his parents; Amber lived independently with her husband and newborn son; Arthur recently moved into an apartment a few miles away from the family home.

Family 2

The Burgis family includes four family members, Barry (father, 47), Beth (mother, 48), Bob (son, 17), and Betty (daughter, 16). The Burgis family identified as upper-middle class and are all Caucasian. Bob began to exhibit behavioral problems and aggressive behavior at age 1½ when his younger sister was born. His first psychiatric hospitalization occurred before he turned 13 after he aggressively assaulted his mother. Bob was later diagnosed with bipolar disorder and PDD. At the time of the interviews, all four family members lived together. Bob’s behavioral problems and aggression began in early childhood but his physical abuse toward his parents and sister has virtually disappeared. He continues to be verbally abusive.

Family 3

The Corby family includes a single mother, Catelyn (45), and her two children, Connor (son, 21) and Catherine (daughter, 20). Catelyn reported divorcing her husband very early in her children’s lives and he moved to a different state. The kids speak to their father occasionally. Catelyn identified her family as middle class and are all Caucasian. At the time of the interviews, Connor was living in a boarding care home, and Catherine and Catelyn were living together at the family home. Connor is diagnosed with bipolar disorder and has been in therapy since age 5 due to behavioral problems in the home and at school; he had his first inpatient psychiatric hospitalization at age 7.

Family 4

The Donner family was represented by the mother (Dina, 38) and father (Dennis, 38). They have five biological children and two adopted children, ranging between 2 and 11 years of age. Both Dina and Dennis identified their family as upper-middle class; they are all Caucasian with the exception of their adopted children being African American. Dina reported that her younger adopted daughter, Danielle, began physically harming family members at age 4. Danielle is 8 years old and diagnosed with conduct disorder. She also exhibits pre-psychopathic tendencies and callous-emotional traits. Danielle and her older half sister were adopted 6 years prior to the interviews. Both Dina and Dennis report that Danielle did not present with behavioral problems prior to her adoption. Danielle has had four inpatient psychiatric hospitalizations; her first hospitalization occurred at age 5 when Danielle attempted to choke her younger sister. At the time of the interviews, Danielle was in a long-term psychiatric and residential facility in a different state from her family’s house.

Interviews, Data Collection, and Data Analysis

Data were collected through in-depth, ethnographic interviews (Blumer, 1969; Spradley, 1979), which elicited rich data as a foundation for thick description (Charmaz, 2010; Geertz, 1973). Each participant selected the time and place of the interview and each interview lasted between 40 and 130 min, with an average length of 78 min. All participants consented to having the interviews audio recorded. Questions included opening and contextual questions (e.g., “I don’t have a child with mental illness, could you tell me what that is like for you?”), relationship-related questions (e.g., “how has your brother’s mental illness affected your relationship with you parents?”), and clarification and concluding questions (e.g., “What do you think are the most important ways to cope?”). Additional topics and conversation points were reflected on as participants discussed issues not previously considered. Interviews were transcribed verbatim and transcripts were reviewed for quality and accuracy.

The interview data were analyzed using a modified version of grounded theory (Charmaz, 2010; Glaser & Straus, 1967); initial analyses were conducted with pen and paper and later transferred to MaxQDA11 for organization and ease of data selection. As this research was drawn from a larger study, earlier data analysis relied on grounded theory to identify patterns and theoretical explanations of family victimization and the meanings associated with having a violent child or sibling with mental illness. All interview transcripts from the entire larger study were read line-by-line to determine differences and similarities within and across the participants. The coding techniques helped to identify how subjects perceived their family situation and how that perception motivated them to act in a certain way or in response to the CMI. A pattern became apparent during the initial data analysis (i.e., initial coding and emergence of broad categories). Participants reflected on similar stages in how they processed and experienced their loved ones’ mental illness and violence. The five-stage process emerged after the first 15 interviews and was then tested in the remaining interviews by using a more focused coding approach.

It is important to note that although the five-stage process generally unfolds in a linear fashion, families may experience a certain stage multiple times or experience stages in a different order. Furthermore, the transition from one stage to the next was sometimes gradual, with one stage overlapping the next; as such, there is no clear indication or time point in which a family will transition from Stage 1 to Stage 2, from Stage 2 to Stage 3, and so forth.

The four families were selected for three reasons. First, the experiences of these families typify the five-stage sequence described below. Second, the four families are different from one another. There is variation in the parents’ marital status and number of children, and a CMI in one of the families was adopted. Third, each family had two or more family representatives, which allowed the families’ experiences to be presented from different perspectives. Interviewing multiple family members allowed the present researcher to corroborate across stories, which enhances the validity of the findings (Daley, 1992; Rolland, 1994).

Results

The data analysis revealed a similar pattern in how each family perceived and responded to victimization and their child or sibling’s mental illness. This pattern can be described in five stages: (a) violence by the CMI produces stress in the family, (b) hospitalization provides a period of respite but also feelings of guilt, (c) return from hospital: family members seek normalcy but feel imprisoned in their own home, (d) turning point: danger in the home forces a choice between removing the CMI from the house or facing unacceptable damage, and (e) aftermath of removing the CMI or keeping the CMI with the family and suffering the damage. In the following pages, narratives are presented that best illustrate these five stages.

Stage 1: Violence by CMI Produces Stress in the Family

In the first stage, the family experiences stress as it witnesses or experiences victimization by the CMI. Topics that emerged from the families’ reflections were the danger posed by the CMI to siblings, resentment by siblings, strain on marriages, and how lives were changed from before. In the following excerpts, family members reflected on the nature of their child or sibling’s behavior and how that behavior affected the family; and how the family conducted its daily tasks. First, Catelyn explained how her son was unable to attend school and thus had to manage him at home every day of the week. She reflected on the daily struggles with her son and how those struggles directly affected her relationship with her daughter:

[My son’s] entire third grade year, he was too unstable to go to school . . . The school district sent a teacher for an hour a day, four days a week, out to the house. That was the year where on an almost daily basis I had to physically throw him on the ground and lay on him until he calmed down. It was hard, yes; it was really hard. The way I would try and pick up Catherine, is I would have family pick her up, and I would tell her that they needed to go outside. Come to find out later, she resented that, because she felt like she was being cut off from the family. No way to win there.

Parents also struggled to hide the danger and stress from the healthy children. Dennis and Dina struggled as parents to hide their daughter’s violence from their other six children. Dina reflected on her daughter’s acute violence and how the other children were keenly aware of their sister’s potential for violence.

She had reached the point where she was attempting to choke her younger sister and when I asked her about it, the first time she did it was when we were all riding in the car . . . “Danielle, what were you doing?” And she said, “I was choking her.” And I said, “Why?” She said, “Because I wanted to kill her.” I was like, “Well. Okay.” . . . It’s hard. You can’t shelter them [the other kids] from it. I think one of the most challenging things for me was when she was coming home . . . from the first treatment center and the kids were worried about safety . . . It’s hard for me to say, “Oh, it’s going to be fine. You’re safe. We have a safety plan, and we’ve got alarms.” . . . I couldn’t say that “No, she just loses her temper sometimes.” No, that wasn’t what it was. She actually, genuinely wants to kill them . . .

Relatedly, Aaron and Alicia felt they could not leave their two sons alone in the house for even short periods of time (e.g., to run errands). For the Arbor family, their youngest son witnessed multiple interactions with the police, which caused additional strain on the family’s well-being. In the following excerpt, Aaron described how he and his wife and son were all prisoners in their own home. They devised a plan for their healthy son in case his older brother became symptomatic or aggressive when the parents were out of the house:

We didn’t leave the house. We were prisoners in our own house. If we left, she [my wife] left and I stayed. Alex would say things like he was afraid. He witnessed the police come in. He was very emotional about it. We had to set up a system where Arthur and Alex weren’t alone together . . . It got to point where I would say to Alicia, “We have to be able to go out for an hour without . . . This is ridiculous. We can’t be prisoners in our own home.” We wouldn’t go far . . . We would tell Alex to call us if anything was wrong . . . The real worry was him [Alex’s older brother] having meltdowns . . . He would have huge meltdowns and lose complete control.

Aaron and Alicia agreed they were “prisoners in their own home,” but Alicia reported a heightened sense of insecurity and strain as she was often home alone with Arthur. In the following excerpt, Alicia described how this tension had a spillover effect on her marriage:

Getting back to Aaron and I. I felt like I was home all the time. He was working all the time, and I have to keep calling him and saying, “This is what’s going on.” Him and I were total disconnect. I don’t think he was realizing the shit that was going down with Arthur . . . I would tell Aaron but it was like you didn’t want to admit it. You didn’t want to see it . . . I feel like back then I was worrying all the time. I was anxious all the time. I was a basket case . . . I’m going through this hell four years ago. We’re totally disconnected. Things are escalating. The police are in here all the time. Him and I are fighting. Things were really, really bad. We were at a point where things were going to split . . . So many times friends have said to us, “Well where’s Aaron?” Classic example, one of my coworkers said, “I don’t understand. Why do you and Aaron never do things together?” “Because we can’t.” . . . If we would try to go out when he was here, we would just wait for that phone to ring. It was awful, just awful.

While Alicia perceived her husband’s employment and absence from the house as unsupportive and a stressor in their marriage, Aaron felt helpless and torn between his need to work and his need to be present with his wife. In this excerpt, Aaron reflected on how palpable the frustration was in their marriage, particularly when Alicia would call Aaron to report a concerning event at home.

I was completely a basket case. I felt guilt. I felt anger. Guilt that I couldn’t be here for her, but I was also very angry at her because I thought she was being unfair to me. In my mind I was earning a living because it was necessary to earn a living in order to support my family. I felt like she was being unfair . . . I think that there was a lot of resentment on Alicia’s part. She was very resentful toward me. There was a lot of blame. It wasn’t directly spoken but in situations like that I really knew that she felt alone. I was frustrated because I felt like I didn’t know how to reconcile the need for income and the need to be here. I felt guilty all the time.

Participants also reflected on their lives before having a CMI. In these comparisons, the participants were able to identify how the stress had drastically changed their original outlook on the future. In the next quote, Barry described his marriage to Beth as optimistic before his son’s mental illness and behavioral problems.

By the time he was born, we were a typical professional couple looking forward to an easy, satisfying and happy family life. Within a year-and-a-half or two years we realized that was probably not going to be the case, and has proven to be true.

The sibling participants also described the stress of having a violent sibling with mental illness. Alex sensed his parents’ stress and knew that his family would be better with separation from his brother Arthur.

It’s so stressful on us because we have to figure out where he [my brother] is going to go, what we’re going to do with him . . . and that’s stressful for my parents, trying and trying and trying. When Arthur is in the house, which isn’t always a good thing, obviously, because he gets on our nerves a lot and can cause tension for my mom and dad. My mom and dad actually have argued a couple of times about how to handle Arthur in certain situations and that caused tension between them. It causes tension and stress in the family . . .

Stage 2: Hospitalization Not Only Provides a Period of Respite but Also Feelings of Guilt

In the second stage, the CMI is hospitalized. Respite but with guilt is the primary theme present in family members’ talk on times when they are separated from the CMI. For the four families in the present research, the children’s hospitalizations, which ranged from a couple days to more than a month, offered the remaining family members time to regroup and return to normalized routines and activities. However, each participant experienced tension between relief and guilt. In the following example, Beth described the relief/guilt tension; her son’s hospitalization made her feel like a “failure,” but at the same time she could enjoy dinner with her husband and daughter.

Oh God, it was great. I mean it was such a relief . . . I mean we’d go visit him twice a day [at the hospital] . . . There was a sense of relief because it was bigger than we could handle. And so it was like thank God because it was frightening, but . . . it was just so great to . . . have that taken off our hands even for a week. We slept. We ate dinner. It was great. Just all those everyday activities . . . That was such a relief. And I hated that he was in the hospital. In some ways it felt a bit like a failure. You don’t want your kid to have to go to the hospital, but I’m so glad he did. And it really was the beginning of identifying his psychiatric issues and treating him.

Bob’s hospitalization not only offered his family the necessary respite from his violent outbursts and caretaking requirements but also the hospitalization commenced his mental health treatment.

Similarly, Aaron and Alicia were acutely aware of how hospitalizations could offer their family relief. During her son’s first hospitalization, Alicia said, “In the beginning it was unreal . . . I’m like, ‘I can’t believe that my son is at a psychiatric facility.’” However, both Aaron and Alicia relished these moments of respite, while still holding on to the idea that their son would return sooner than later. Aaron described the tension in the following excerpt:

It was surreal to have those little periods of normalcy where we didn’t have to worry. We could actually go out and have some freedom. It was like, “Okay now we’re living like everybody else is living in the world,” or most people. Then obviously we had to psych ourselves up for that time when he was coming back and we had to revert.

Despite a sense of relief, family members often struggled to relax. For example, Aaron and Alicia reluctantly booked a vacation while their son was in the middle of an extended inpatient hospitalization. In the following excerpt, Alicia explained how she and her husband struggled to relax while on their trip.

It’s almost like sometimes we feel guilty that we’re enjoying our time. We’ve actually had some doctors or other people say, “Listen, he’s safe, go.” It’s hard. You’re conditioned to live this way. Then when you get that sense of freedom it takes you days to relax and realize . . . It’s hard.

While caregiving for a CMI minimizes the amount of attention parents can offer healthy children, temporary respite offers children the opportunity to spend time with their parents. In the following excerpt, Catherine described how relieved she was to have her mother’s attention and also to be able to focus on her schoolwork. Although she was saddened by her brother’s illness, she braced herself for his discharge and inevitable transition back home.

I felt a little relieved because I would have a little bit of a break from reality, I just had time to cool off and just not have him there . . . It would make me feel so guilty because I was feeling that way, because he’s my brother and I love him, but having him be gone, I knew that he was getting treatment. And he would come back, and he would be, at least for a little while, stable. So, it was definitely kind of up and down . . . after my brother would come back, it would go back to her [my mother] focusing all her attention on him. It was kind of like a tease to have it just me and her . . . I kind of made sure that it didn’t upset me to the point where I was resentful toward my brother. Because I knew that when he would leave and go to the hospital . . . that it was only temporary. I didn’t want to get used to it just being my mom and me and then off.

Parents also have to explain to their healthy children why their sibling is in the hospital and what will happen when the child returns home. In the following excerpt, Dina reflected on her conversations with her other six children during these times of respite.

They’re hard conversations, because it’s not the way that I expect to speak to my kids. If this was a child that was not a sibling, I would not allow my kids to have contact with this child . . . It’s beyond hard. You get to a point, you feel fine because as frustrated as we are with her . . . with questions we have about whether they can actually all live together again, all of that’s there . . . At the same time, she’s still ours and she’s still, there’s still that responsibility and wanting what’s best for her, but then wanting what’s best for these other six. That emotional safety is a big thing . . . Everything changes. They relax. None of us has to be nearly, when she’s in the house, there’s just this level of everybody feels like they have to be a little more vigilant in what they’re doing and where people are and that’s not there when she’s not here.

While she knew her daughter was a part of the family, Dina also knew that her daughter presented the family with safety concerns. During these moments of respite, Dina’s family, as well as the others in this study, was able to relax in the fleeting moments of security and safety.

Stage 3: Return From the Hospital—Family Members Seek Normalcy but Feel Imprisoned in Their Own Home

In the third stage, families cope with their CMI’s discharge and transition back home. There are three primary themes in this stage: (a) trying to find normalcy, (b) feeling like prisoners in own home, and (c) parents lacking energy and time for other children. During this stage, family members are aware of their child or sibling’s mental illness and violent tendencies; the families have sought treatment and formal caregiving support; and families have also experienced moments of respite and relief during the child’s absence. Family members in this study looked for normalcy in their activities as a family (e.g., dinners, movie night) and in providing social activities for the healthy children (e.g., sleepovers, extracurricular activities, etc.).

Because their son continues to live at home, Barry finds rare moments of normalcy that he and his wife know to be special. In the following excerpt, Barry reflected on these rare moments.

Those golden moments that sprinkle throughout the year like, “Ah yes, we are able to get along together.” Like yesterday, like today so far . . . We’ve been watching movies with the kids. We watched Sharknado . . . The two of them sitting there laughing their heads off recognizing how stupid it was . . . We live for those moments. They’re few and far between, though. I assume that people who always have those moments must not recognize how special they are.

Despite these “golden moments,” normal daily activities, like eating dinner, present Barry’s family with daily stressors. In the following quote, his wife Beth described a stressful and chaotic family dinner.

Well dinnertime is probably the worst event of the day still. It’s socially—it’s pretty intense, you’re facing other people . . . It’s hard for him to be able to manage eating, deal with the stimulation of us at the table, the whole thing is just—and he’s meant to sit in one place. It’s more than he can do, and Barry’s over here like, “Oh God. Use your fork,” really disappointed with—he disappoints dad every mealtime. And he disappoints all of us. We’re just like, “Bob, knock it off.” I don’t know why we continue to eat as a family . . . My family always ate dinner together, as did Barry’s, and I can’t imagine eating dinner like one person in front of the TV.

Though her son’s difficulty with dinnertime norms (e.g., eating with silverware, maintaining conversation) added to her family’s experienced stress, Beth made it clear that her family continued this activity on a daily basis.

As mentioned in the discussion of the first theme, family members also reported feeling like prisoners in their own homes. They walked on eggshells so as to not give cause for a physical or verbal outburst. Relatedly, the families in the current study developed rules and expectations in their daily routine to minimize any potential for disruptions. For example, Catherine reflected on how family outings, including vacations and dinners, were disrupted and dictated by her brother and his outbursts.

Whenever he’s not feeling good, that’s when we leave. And, that’s, he’s been in control of all our, like, anytime we took a vacation or, like, went to the fair or anything, or, even went to our grandparents’ house. Whenever he said it was time to leave, that’s when we left.

Like Catherine, Betty explained how her family implanted household rules meant to minimize her brother’s escalations.

. . . We have a no singing rule in the house rule for dad, which he hates, you know he sings all the time, but you know, that’s his one rule. Bob will yell, “You have to stop!” if he does sing. He’s [my dad’s] pretty good at obeying that because he realizes that it just doesn’t work.

Parents also seek normalcy by facilitating normal social activities for their healthy children. Because caregiving for a CMI is both time-consuming and exhausting, parents are keenly aware that they may not always have enough energy or time for their other children. In the following excerpt, Catelyn reflected on how she tried to negate issues with unequal attention but she thought her daughter was resentful.

As in any household with one child with a mental illness, and another one without, unfortunately I think that the person that paid the most was Catherine . . . I did the best I could to try and give Catherine some normality, and whatever energy and devotion I had left over from dealing with Connor. The attention Connor got, even though most of it was negative attention . . . she grew up with quite a bit of resentment.

To counter resentment or any negative outcomes of minimal attention, Catelyn often suggested her daughter go on sleepovers or outings with friends.

I did my best and broke my back to make sure that she could spend time with her girlfriends, or drove her across town to spend weekends with her girlfriends when she asked. She liked to do summer swim team, and I always signed her up for it, and took her to her swim meets. As a child, she couldn’t understand what I was going through, and give me any impression of that. It’s slowly starting to dawn on her, but it’ll be another decade before she actually looks at me and goes, “You know what? I forgive you.”

Stage 4: Turning Point—Danger in the Home Forces a Choice Between Removing the CMI From the House and Facing Unacceptable Damage

The fourth stage occurs when the violence has escalated to a point that family members no longer feel safe at home. The primary theme in this stage is that the CMI must be removed or unacceptable damage will be done. For three of the families, this turning point resulted in the CMI being permanently removed from the household. The fourth family kept their son at home. Each family’s turning point is described below. First, Dina and Dennis Donner had a unique situation in that, because of their daughter’s diagnoses and history of homicidal ideation, they tried different avenues of separation. They sought long-term residential treatment and therapeutic foster care placements very early for their daughter; however, each placement was unsuccessful. In between out-of-home placements, Dina and Dennis had their other six children live with relatives for 6 to 8 weeks to get their children out of harm’s way and also so Dennis and Dina could figure a plan for their CMI. Dennis reflected on the separation from his children.

It was difficult with them being gone. I think we missed them and they missed us. It was sad because you miss out on . . . some of that development, especially when they come back. They’re obviously a little more mature than they were when they left.

During these 6 to 8 weeks, Danielle’s aggression escalated and her parents reported an event in which Danielle assaulted Dina with a knife. This event was their final turning point. They soon found Danielle, as reported by Dina, “the only treatment center that would take her because of the safety concerns.” At the time of their interviews, neither Dina nor Dennis could imagine Danielle returning home in the near or distant future.

The Corby family also reflected on multiple events that led to the turning point. The first occurred when Connor was between 14 and 16 years old, and the second was more recent. The first event occurred when Catelyn learned that Connor was being physically and emotionally abusive toward his sister. In the following excerpt, Catelyn explained how she decided to move Connor in with his father and the aftermath of that decision.

Between 14 and 16, his dad cleaned up his act and moved to New Orleans, and offered to take him at the same time that my daughter was begging me to . . . because I worked, I had to leave them together, home alone . . . He had been relatively stable . . . Things seemed to be OK, but apparently he was starting to be physically and emotionally abusive toward his sister at that point so I couldn’t leave them alone anymore. I was looking at another dilemma; what am I supposed to do? I can’t work full-time and be home with them, and I couldn’t get anybody to necessarily watch my son. He went to New Orleans to live with his dad for a couple of years.

Connor moved back in with his mother and sister a couple years later, but his abusive behavior continued. Soon after Connor was admitted for another psychiatric hospitalization and Catelyn decided her son could not return home after his discharge.

When Connor turned 18, he was in the hospital, still exhibiting the violent behavior, but getting better. His medications were doing more of what they needed to. I couldn’t trust him, and my home was not a safe place for either of us. When the social worker contacted me to have him released, I had to make some decisions to tell her that he could not come back to my home, which was, as any time I have to do something hard like that, it was heartbreaking. It was very hard.

Catelyn and Dennis both expressed sadness over the decision to separate their families, but they also knew it had to be done for the family’s safety. The Arbor family, however, grounded their turning point decision in the family’s need to care for their other son. In the following excerpt, Aaron and Alicia discussed their decision-making process.

Alicia:

Every time Arthur would be taken out of here and admitted to a psych facility, I would pretty much say to Alex, “He’s not coming back.” I would be adamant about it. Of course, he would come back. After this happened, I don’t know how many times Alex was like . . . “Don’t say he’s not coming back because you say that all the time and I’m telling you right now, he’s comes back I’m leaving.” That’s when the bells really went off . . . What is this doing to Alex?

Aaron:

You’ve been pretty adamant too that you were going to leave. You were ready to take Alex out of here.

Alicia:

I said to Aaron . . . “I think I should take Alex and Alex and I should move into an apartment.” You want to fix Arthur and you want to take care of him. I kept saying, “There’s nothing you can do, but you’re going to kill all of us and I can’t participate in all that.” . . .

Aaron:

The choices literally boil down to . . . Arthur being on the streets or his having a roof over his head . . . He won’t survive being on the streets. We know that. As horrible as it is to have to have him here at the house, at least he won’t die.

Aaron conveyed later in the interview that he understands his son cannot live successfully in the house, even though he constantly worries about his son’s safety and well-being.

We can’t successfully live together. The reality is, is that if he loses his apartment, he is going to be homeless at this point. I believe very strongly that the worst thing we could do at that point in time is to take him home . . . He’s ten minutes away but I’m constantly worried about him.

Unlike the previous three families, the Burgis’s turning point was realized after the event had occurred. They realize now that they decided by default to suffer the consequences. Their daughter has recently struggled with her own psychiatric issues, including self-injurious behaviors, which Barry and Beth attribute to her history of victimization and witnessing her brother’s aggression. Beth, in particular, questioned her and Barry’s decision to keep Bob in the house.

In retrospect . . . we probably should have put him in a residential program. And we could have done it in a heartbeat, and we always felt like he’s never going to get the care in a residential setting that he’s going to get at home. If we can do it, then we should. And I still believe that to be true, but . . . I don’t think Betty factored into that decision as much as she should’ve . . . It wasn’t safe to have him at home. Especially because of Betty . . . She’s been cutting, she’s about to go into this DBT program, she was impatient at the child development unit. And I think what we’re seeing is a kid who has . . . a mood disorder, but who has . . . suffered some trauma on a day-to-day basis from this having been her home . . . I feel like I didn’t protect her. I feel that trauma too. It’s real.

Stage 5: Aftermath of Either Removing the CMI or Keeping the CMI and Suffering the Damage

The final stage occurs after the families’ turning points. Four topics are present among the families who chose to remove the CMI: improved functioning of the family, concern about the future of the child and the family, inconsistent improvement of relationships, and acceptance of the mental illness. For the family that chose to keep the CMI in the household, the parents’ reflections include regret over the damage done to their healthy child and their spousal relationship.

In general, the families recognized their love for the CMI, yet at the same time they accepted the need for space. Arthur commented on this reality:

I hate to say like he’s a burden but . . . It is very stressful when he’s around . . . We got our jobs, I got school, and now we have things to take care of here. Arthur is kind of like an extra thing we have to worry about . . . We obviously love Arthur, we enjoy having him around, but it is honestly a lot less stressful when he’s not here.

Like Arthur, Dina reflected on how her family grows together and functions well in Danielle’s absence; she noted how there are still some struggles in their family functioning, but now these struggles seem like typical-family dynamics.

When you pull Danielle out of the picture, the relationships are extremely healthy. Our kids are very resilient . . . There are some tense relationships . . . But I feel like when you take her out of the picture, they’re normal relational issues . . . When you put her into the picture, it completely changes. Not their relationships with each other, but just their relationships with her. There isn’t a single one of them that has a healthy relationship with her right now.

While the families express relief in what appears to be a permanent state of respite, there is still concern that the CMI will return. In the next quote, Dennis noted his children’s resiliency, yet he still recognized their concern for the future.

I think most children are incredibly resilient critters . . . I think that the biggest thing for them is the question of . . . what does it look long-term? Does she come back into the house again? Which I would describe as their biggest fear. When she is out of the house, I think they tend to behave in a normal way. I do think it’s interesting that the shared experience of the trauma that she’s inflicted has really brought them all very close together. They are very much a unit.

The theme of inconsistent improvement across strained relationships is found in Catelyn’s reflections. She said the relationship with her son “is much better now. He’s maturing more emotionally . . . The time that we do get to spend together . . . It’s a pleasant, comfortable, enjoyable time together, just having a relationship.” However, in the following excerpt, Catelyn reflected on the lasting negative impacts on the relationship with her daughter.

All the issues going on with Connor really did a lot of harm to what I would have liked my relationship to be with my daughter . . . Because I was trying to get control over a very uncontrollable situation, I think I was more putting borders on how to . . . that’s not how I wanted to come across to her, but it’s how she saw it, and probably how I did come across. By the time I would calm down enough to actually sit down and want to be able to talk to her more openly, and have a deeper conversation, she was also upset and would not open up to me . . . The time and distance from him, on both of our parts, that’s giving us the opportunity to forgive ourselves, forgive each other, and kind of be able to have a relationship.

A fourth theme is the acceptance of the family member’s mental illness and one’s need to readjust expectations. For the subjects in the current study, some family members adjusted their expectations for inclusion, while others prepared for a complete loss of the CMI. In the first example, Catherine explained how she accepted her brother for who he is in such a way that they can continue to have a relationship.

I kind of had to realize that what he has is never going away. And it’s going to be a part of our lives forever, so I had to re-evaluate what was important, and I just have to make sure that I have this relationship with my brother, because this is how it’s going to be forever . . . It’s been a lot easier to have a relationship with my brother because he’s been stable for a long period of time. When he is stable, it’s like he’s a completely different person . . . He’s just very caring, he’s very funny, too . . . It’s been all-in-all a lot easier since he’s been older. He doesn’t live in the house with me and my mother anymore. We have that separation.

Catherine envisions a positive relationship with her brother because of the stabilizing effects of his treatment and medications. In contrast, the Donner family has accepted a permanent separation from their daughter and has consequentially reassessed their future outlook. In the next excerpt, Dennis predicted how his daughter’s mental illness would lead to interactions with the criminal justice system.

I would say I suspect at some point we’ll lose contact with each other. My suspicion is that she’ll begin having frequent contacts with the justice system and . . . I would really guess that she’s going to search for a little substance. I think at that point, she’ll kind of probably just disappear off the map.

Dina, however, had hope that she will continue to be a mother figure to Danielle, albeit from “a distance.”

What I would like, my ideal, I can parent this child from a distance without any problems. She recognizes my voice in her life and she will listen to me . . . I want to be able to continue to have that voice in her life . . . I don’t know that I could ever parent her in a home environment again.

Unlike the previous families, the Burgis’s kept their family in the same house. Beth and Barry explained that while they kept the family together, such togetherness resulted in damaged relationships. In the following excerpt, Beth expressed fear that her spousal relationship might not recover.

I think more typically, families have a kid like Bob, he’s in a residential program, and that’s how it’s managed. I guess we kind of did it, but we’re very damaged by it . . . The feeling is, I think, that the marriage is basically put to the side. And because you have to deal with this other shit, we give so little attention and time to our relationship. I mean it’s a good thing we like each other because it’s not like . . . I think there’s this feeling like someday the kids are going to leave and we’ll be able to have fun again or something, but I’m worried we’ll be too old and tired then; it’ll be too late. But there is kind of like, oh, can we get back to . . . I mean I think what we rely on is . . . that we like each other and we’re able to hang out together and we enjoy that . . . This is certainly not what we imagined our life was going to be like.

Discussion

The families that are the focus of this study were selected not because their experiences alone exemplify the five-stage pattern discussed above. Rather, their experiences typify the experiences of the set of 14 families, including 42 family members, in the larger sample of interviews. Although the five-stage pattern itself has not been previously identified, other researchers have noted several features of family experiences during the individual stages. The extensive list of negative and acute outcomes for both parents and siblings of persons with mental illness identified in the present research is consistent with previous literature (e.g., Band-Winterstein et al., 2016; Chamblin, 2009; Labrum & Solomon, 2017; see Saunders, 2003, for a detailed literature review on families living with severe mental illness). Some researchers have specifically focused on parents’ perceptions during a child’s first psychiatric hospitalization. For example, Clarke and Winsor (2010) examined parents’ perceptions and needs during their child’s first psychiatric hospitalization; they found parents expressed both relief and shock/disbelief during their children’s hospitalization and struggled with their child’s transition home.

SI and family systems theory offered the current research a unique perspective for studying family violence. From the standpoint of SI, a main result of the study is that the meaning these families give to their experiences of living with a CMI, as reflected in these interviews, is that a family with a violent CMI and other healthy children cannot live through the episodes of violence without removing the CMI from the home or suffering unacceptable damage to the family. From a family systems standpoint, the chronic stressors associated with caring for a violent CMI can have serious consequences for family members and family relationships. The stress and pressure on family relationships noted in the current findings is consistent with prior literature on family burden (Cook, Cohler, Pickett, & Beeler, 1997), including strains between parents and healthy children (e.g., Lukens, Thorning, & Lohrer, 2004), healthy family members and their mentally ill siblings (e.g., Leith & Stein, 2012), and between the parents/spouses (e.g., Atkin & Ahmad, 2009). Although the current research did not include interviews with the CMI, one can see how individual family members affect the CMI. For example, a family member will respond to the CMI’s outbursts by trying to deal with or manage the child, changing family behaviors, and temporarily or permanently excluding the CMI from the family (e.g., through hospitalization). This tracing of effects on the child can be derived from interviews with other family participants.

This research shows how the families’ struggles persist after hospitalization. Although the findings do not highlight negative interactions with hospital staff or other treatment providers, perhaps we can assume that improved transitional services from the hospital to the home could help families better prepare for the CMI’s discharge. Past research has identified poor relationships and negative interactions with mental health staff to exacerbate stress and tension among family caregivers (e.g., Clarke & Winsor, 2010; Johnson, 2000). Clarke and Winsor (2010) found parents felt unsupported by inpatient staff and excluded from treatment team and discharge meetings, which decreased the parents’ confidence and preparation for caregiving. Similarly, Solomon and Marcenko (2003) found hospital and mental health staff to not provide parents information on crisis intervention techniques, medication management, or emotional support. Education on coping and the realities of caregiving would prove beneficial to parent and sibling caregivers, regardless of the CMI’s return home or transition to alternative housing. Furthermore, programs run by mental health professionals that offer in-house support or in-house training for family caregivers can help with day-to-day issues or crisis intervention.

Respite options, improved communication with treatment providers, and mental health education have the potential to minimize stress and anxiety for the caregiving families across each of the five stages identified in the current research. Better police training for psychiatric crises and family intervention could assist families both before and after hospitalization. Improved communication with hospital staff and treatment providers (e.g., social workers, psychiatrists) would offer family members an opportunity to voice their concerns regarding safety or general issues associated with caregiving, and respite care can minimize caregiver burnout.

Limitations and Future Research

The snowball and purposive sampling techniques in the present research inadvertently led to a greater representation of Caucasian participants who identified as middle or upper-middle class. Different populations with different financial means might have different levels of access to either formal or informal support groups. While the purpose of grounded theory is not to construct broad generalizations, the current study does offer a conceptual model that can be further tested at a later point by other researchers or with other data. Researchers might also investigate whether the five-stage pattern is replicated in other family samples or in comparison groups. Research on parents’ experiences of living with a child with autism spectrum disorder has similar findings. For example, Mount and Dillon (2014) examined parents’ experiences of living with a child diagnosed with autism spectrum disorder. The nine parents interviewed reflected on a variety of stressors and negative outcomes, including a sense of burden and restricted social lives, physical or verbal abuse toward the parents by the child, and being mentally and physically tired. Finally, the current research did not explore positive outcomes for families with mental illness that have been identified by prior researchers (e.g., Aschbrenner, Greenberg, Allen, & Seltzer, 2010; Johnson, 2000). In summary, future research would benefit from a larger sample size with varied demographics that could replicate or expand the findings from this project and also include both positive and negative changes and coping strategies.

Footnotes

Acknowledgements

The author thanks Amy Anderson, Jerry Cederblom, Mary Ann Lamanna, Bob Meier, Pete Simi, and Emily Wright for their continued guidance and support for this project, from early drafts and gathering data to final submission.

Author’s Note

This article grew out of the author’s comprehensive exam and dissertation research, directed by Pete Simi at the University of Nebraska at Omaha.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was partially funded by the Graduate Research and Creative Activity (GRACA) grant, awarded by Graduate Studies at the University of Nebraska at Omaha.

Author Biography

Karyn Sporer is an assistant professor of Sociology at the University of Maine and is a doctoral candidate in the School of Criminology and Criminal Justice at the University of Nebraska at Omaha. Her main research interests are in the areas of family violence and victimization, mental illness and violence, and violent extremism and terrorism.

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