Impact of Patients’ Psychiatric Hospitalization on Caregivers: A Systematic Review

The trend toward brief psychiatric hospitalizations may place increased demands on caregivers, both during and after a patient’s psychiatric hospitalization. Short inpatient stays may increase caregivers’ need to adjust and resolve seemingly insurmountable circumstances with little or no external support, both during the patient’s stay and after discharge. Furthermore, caregivers may need to support the patient after discharge because symptoms persist.

This article presents results from a systematic literature review that addressed three questions: What are the effects of psychiatric hospitalization on caregivers of patients? Do the effects on caregivers change over time? What factors influence the impact of the psychiatric hospitalization on caregivers? This review extends previous reviews (1,2) by focusing on multiple ways that psychiatric hospitalizations can affect caregivers of patients with a variety of psychiatric problems—not just those with a particular diagnosis.

Methods

This review was informed by three database searches: Web of Knowledge, PsycINFO, and MEDLINE (PubMed). Drawing on Angold and colleagues’ work (3), our review examined multiple ways that caregivers can be negatively affected (well-being, stigma, relationship changes, daily life, economic strain, and general medical health) and positively affected by the psychiatric hospitalization of the person they care for. Search terms included psychiatric or mental health AND inpatient or admission or hospital AND family members or caregiver or parent. Abstracts published before August 31, 2013, were reviewed; relevant articles and their reference lists were examined against inclusion criteria. Studies were included if they focused on caregiver outcomes, collected data from caregivers of patients (of any age) who were psychiatrically hospitalized for any reason, and were peer reviewed and published in English. Studies were excluded if they recruited caregivers from both inpatient and outpatient settings (4,5) or included data collected before 1980 (6–9). All articles (N=111) were independently reviewed by two authors. Discrepancies about whether a study met inclusion criteria were discussed (N=20), and consensus was obtained. Twenty-nine articles met inclusion criteria.

Results

Characteristics of caregivers and patients in the 29 articles are presented in Table 1. Thirteen studies focused on caregivers of adults, eight on caregivers of youths, two on both, and six did not specify. Seven studies indicated whether patients had possible previous hospitalizations, and 24 included patients’ age. Time between hospitalization and follow-up assessments was not provided in six studies, but in the other studies data were collected from baseline (during hospitalization) to approximately four years after the hospitalization. Table 2 summarizes methods used and areas of influence on caregivers.

Effects of Psychiatric Hospitalization on Caregivers

Psychological well-being.

Twenty-eight studies examined caregivers’ psychological well-being. Qualitative interviews with caregivers of adults indicated that caregivers felt isolated and confused when dealing with mental health professionals (10). Further, caregivers of adults hospitalized for the first time reported experiencing disbelief and shame (11). In one study, 32 caregivers of adult patients with bipolar affective disorder reported feeling helpless, hopeless, and confused about the patient’s behavior. In a study of 37 sibling-caregivers of adults with schizophrenia, siblings reported experiencing psychological distress as a result of the illness and the patient’s management of the illness (11).

Using data from caregivers of youths, quantitative studies that compared caregivers of hospitalized individuals with caregivers of individuals not hospitalized found that the former group experienced more distress (12–15). For example, three days after their adolescent was admitted to the hospital, caregivers of the hospitalized youths reported experiencing more distress than caregivers of adolescents who had not been hospitalized, as measured by the general severity index of the Symptom Checklist 90 (SCL-90) (14). In addition, fathers of suicidal adolescents who also had mood disorders reported more somatic symptoms, hostility, anxiety, and depression than either fathers of nonhospitalized adolescents or fathers of adolescents hospitalized for other reasons, even after the analysis controlled for severity of adolescent depression (13). Mothers of youths hospitalized for mood disorders, regardless of whether the youths had a history of suicidal behaviors, reported more somatic symptoms, obsessive-compulsive symptoms, anxiety, and hostility than mothers of nonhospitalized adolescents; these differences were not significantly different after the analysis for severity of adolescent depression (13).

Using quantitative and qualitative methods, one study assessed parents’ well-being before their adolescent attempted suicide, after first learning of the attempt, and the day after the attempt (16). Across time points, mothers reported increased sadness, anxiety, hostility, and caring. Fathers reported more sadness and caring after the suicide attempt than before the attempt, but they reported less anxiety than mothers.

Findings regarding caregivers’ mental health are not uniform across studies. For example, in a study of 63 caregivers of adults with a first onset of schizophrenia, fewer than 10% of female caregivers experienced significant distress, as reflected by global severity scores on the SCL-90 (17). Similarly, caregivers (N=32) of geriatric patients did not report elevated scores on the Brief Symptom Inventory (18).

Stigma.

Caregivers may experience stigma associated with patients’ psychiatric hospitalization. Stigma may be reflected in caregivers’ negative self-valuation, feelings of shame or embarrassment, or perceptions of being viewed or treated differently by others, presumably because of their caretaking role and association with the patient (19). Caregivers may also be self-devaluing or concerned about others’ perceptions about causes of the illness, such as genetics or the patient’s upbringing.

Six studies addressed caregivers’ experiences of stigma (19–24). Caregivers of 16- to 24-year-olds with nonaffective psychotic disorder reported feeling ashamed, describing schizophrenia as “the ‘s’ word” and “a dirty word” (22). Caregivers of 25 adults in an extended care hospital reported “struggling” with the patient’s mental illness, wariness regarding their family’s and community’s reaction to the illness, and selective acknowledgment of the illness among relatives (23). Similarly, caregivers of young adults reported not sharing information about the illness and hospitalization with friends or coworkers and, in one instance, with the hospitalized person’s siblings (20). Caregivers also reported exacerbated feelings of isolation experienced during the hospitalization (20). In a cross-sectional quantitative study, the extent to which 156 caregivers of patients hospitalized for psychosis who were between the ages of 16 and 26 and who had disclosed their mental illness to others were assessed six months posthospitalization (19). Forty percent of caregivers either concealed the hospitalization from everyone or told only a few people.

Daily life.

Six studies examined changes in caregivers’ daily life. Five studies focused on caregivers of adults (18,21,25–27), and one study did not report the patients’ age (28). In assessments conducted at least six months after hospitalization, almost 30% of 125 caregivers reported disruption in their everyday activities (26). Caregivers (N=162) of patients hospitalized for violence or suicide attempts made similar reports using a semistructured, reliable, Swedish instrument (25). Three weeks after discharge, 28% of caregivers reported lost leisure time, 33% reported not being able to have company, and 16% quit working (25). Twelve percent of caregivers (N=41) of adults with bipolar disorder reported limitations in their work, and among caregivers who worked outside the home, 76% reported that they reduced the number of hours they worked or took time off (21). In contrast to these findings, 32 caregivers of geriatric patients reported life changes on the Life Experience Survey that were not significantly different from those of a normative sample of college students (18). Caregivers commonly reported changes in sleeping and eating patterns.

Economic strain.

Five studies examined economic strain among caregivers (21,23,26,29,30). In a sample of 125 caregivers of adults, 38% reported financial strain six months after the patient was discharged (26). Similarly, of 41 caregivers of adults with bipolar disorder who were interviewed two years after the hospitalization, 27% reported a reduction in their income (21). Similar findings were reported by other researchers (23) who used assessments conducted during the hospitalization. Furthermore, caregivers of youths reported a link between economic strain and coping difficulties (29,30). Economic strain may result from the cost of treatment and travel to the hospital or treatment site (23).

General medical health.

Two studies examined the impact of the psychiatric hospitalization of adult patients on caregivers’ general medical health (28,31). Caregivers of individuals with depression or bipolar disorder reported more bodily pain and less energy than individuals in the community who were matched by age (31,32). In the second study (patients’ age unspecified), 16% of caregivers of patients with schizophrenia reported that the illness had an impact on their or a family member’s general medical health (28).

Relationships.

Six studies examined the relationships between caregivers and adult patients (8,11,21,23,28,29), and another examined changes in caregivers’ relationships with others after hospitalization (23). On the basis of data collected two years after the patient was discharged, 90% of caregivers felt their relationship with the patient was distant (21). Moreover, 44% of the caregivers (especially partners) reported experiencing violence from the patient or feared experiencing such violence. Partners also reported sexual relationship issues, which sometimes persisted after the patient recovered. In a sample of 64 caregivers of patients with schizophrenia, 73% reported that their relationship with the patient had partly worsened since the hospitalization, which occurred about four years before the assessment (28). In contrast to changes in relationships with the patient, caregivers in one study did not report changes in relationships with others in general after hospitalization (23). Caregivers of youths made similar reports—no effect (15) or negative effect (29,30).

Positive impact.

Four studies reported that the hospitalization had a positive impact on caregivers (11,21,31,32). Caregivers reported that caregiving was rewarding (31) or that it improved relationships when the patient was doing better (21). One caregiver reported, “He’s more open with me now than he used to be. And I’m more nurturing than I used to be. I take more care of him and listen more” (21). Similarly, in the narratives of sibling-caregivers of patients with schizophrenia, siblings reported a “deeper bond” with the sibling, a “more intense bond among family members,” and other positive outcomes (11). Further, siblings reported that their experience with the patient often shaped their choice to work in the social sector.

Changes Over Time

Six studies focused on the effects of psychiatric hospitalization over time on caregivers (15,32–36). In a series of studies from Munich, Möller-Leimkühler and colleagues (33–36) examined the impact on caregivers of individuals (age unspecified) with schizophrenia or depression. Using data collected three weeks postdischarge (baseline), they found that 71% of caregivers reported changes in their daily routines and that 64% reported restrictions in leisure activities because of problems related to patients’ behavior. Caregivers also reported higher levels of distress than normative samples, as measured by the SCL-90 (33). These negative effects continued one year after discharge, although the level of impairment or interference was often less severe than reported at baseline (34). Two years after discharge, caregivers reported few changes in their daily lives or being bothered by the patient; however, compared with normative scores, their scores remained elevated (36). In addition, caregivers did not report a significant improvement in their well-being, as measured on the SCL-90, from year 1 to year 2.

Another study examined whether caregivers of individuals with depression (N=12) were affected differently from caregivers of adults with bipolar disorder (N=10) in the year after hospitalization (32). The authors reported decreased strain among caregivers of patients with bipolar disorder and no change among caregivers of patients with depression, although these findings did not reach significance because of the small sample.

A study by Snell and colleagues (15) examined changes in depression and anxiety among caregivers of youths with various diagnoses. From one week to three weeks posthospitalization, 35 caregivers rated their distress by using a Likert scale; their ratings decreased significantly from week 1 to week 3.

Factors Influencing the Impact on Caregivers

Fifteen studies examined factors associated with how caregivers are affected by a patient’s psychiatric hospitalization (13,17–19,24–26,29–31,34–38), particularly the reason for the hospitalization and the patient’s diagnosis. Most of these studies focused on caregivers of adult patients. In several studies, compared with caregivers of patients hospitalized for other reasons, caregivers of patients hospitalized for a suicide attempt reported more issues with negative well-being (that is, mental health problems and worry) (25,37). Compared with caregivers of patients with depression, caregivers of patients with bipolar disorder reported more changes in their lifestyle, worse family functioning, and not feeling as much reward for providing care one year after discharge (32).

Caregivers’ demographic characteristics (such as gender, race-ethnicity, and socioeconomic status) also were identified as potential factors associated with the impact of hospitalization on caregivers. Among caregivers of adults, gender differences were not associated with caregiver reports of stigma (26) or psychological distress (36). On the other hand, results of one study indicated that mothers of youths who are psychiatrically hospitalized may experience more changes in their lives than fathers (13). With regard to racial and ethnic differences, black caregivers in one study reported less impact than white and Hispanic caregivers on their roles and responsibilities (24). The role of caregivers’ socioeconomic status is unclear. One study noted that caregivers with high socioeconomic status reported more stigma than individuals with lower socioeconomic status (19), whereas this difference was not noted in another study (26).

Four studies examined caregivers’ coping (17,29,30,38). Caregivers of adults reported using avoidance coping strategies, which was linked to more negative changes in their daily life (17). Caregivers of youths reported using emotional and instrumental or hands-on support (30), and access to respite care was associated with less stress (38). Despite these resources, caregivers of youths reported needing more support (29,30).

Factors that change over time may also explain how caregivers are affected. One study (patients’ age unspecified) provided the following reasons for changes over time: “[expressed emotion], patients’ residual symptoms, patients’ global functioning, neuroticism, emotion-focused coping, problem-focused coping, self-efficacy, general negative stress response, perceived social support, additional life stressors, extraversion, sociability, openness, conscientiousness” (36). Caregivers’ personality traits were associated with caregivers’ well-being, with higher scores for neuroticism, as measured by the NEO Five-Factor Inventory, associated with poorer well-being (35).

Discussion

This systematic review of 29 articles highlights the impact of patients’ psychiatric hospitalization on caregivers. Caregivers experience a range of positive and negative reactions to hospitalization; they have reported decreasing negative impacts over time (36) and more negative emotional experiences than the general population (14). Several factors may explain differences in caregivers’ experience, including the severity of the patient’s psychiatric problems. Further, caregivers experience a continuum of reactions to caring for patients after hospitalization, with some reporting few disruptions and others reporting multiple impacts, including disruptions in daily activities and stigma. This heterogeneity in reactions may be partly attributable to the characteristics of caregivers and patients. Caregivers’ reactions may also be influenced by coping style, cultural-ethnic perceptions of mental illness, and beliefs about mental illness.

Practice Implications

Results of this review have implications for practice. Clinicians should include caregivers in treatment and discharge planning to enhance caregivers’ capacity to support the patient during and after hospitalization. Caregivers need education about the negative effects that severe psychiatric difficulties may have on them. Such education may normalize and validate the caregivers’ reactions and assist caregivers in developing and using coping skills to handle stresses during and after hospitalization. Teaching caregivers stress management skills (for example, breathing exercises and daily walks) or providing referrals for community resources (for example, the National Alliance on Mental Illness or the local mental health association) may decrease stresses associated with the patient’s hospitalization (20,39).

Educating clinicians about potential caregiver reactions may also improve clinical outcomes for patients. Clinicians need to be aware that caregivers may be dealing with their own issues related to hospitalization or other issues and may need resources and referrals after the patient’s discharge.

Research Implications

Several directions for future research are suggested. First, researchers need a consistent way of operationalizing impact (positive and negative) to increase ease of drawing conclusions across studies. Second, new comprehensive conceptual or theoretical models are needed. Existing models focus on stress and coping (17,29,30) without considering factors identified in this review (for example, characteristics of caregivers and patients) or cultural and ethnic differences. Of the 29 studies reviewed, three included data on caregivers’ race-ethnicity, eight reported patients’ race-ethnicity, and one focused on cultural and ethnic differences. In addition, duration of the illness, number of hospitalizations, and caregiver satisfaction with hospitalization and staff are factors potentially related to the impact on caregivers and need further study. None of the reviewed studies examined the impact of these factors on caregivers’ reactions, whereas research on caregivers of individuals hospitalized for nonpsychiatric reasons has shown negative impacts on caregivers, including on financial status (40), caregiver-patient relationship quality (41), and patient functioning and caregiver support (42). Third, greater understanding is needed of the heterogeneity of effects of psychiatric hospitalizations on caregivers, with a focus on characteristics of patients’ illness (for example, duration of illness, patients’ age, and degree of risk for harm). Identifying profiles of caregivers’ experiences after hospitalization could illuminate different ways that caregivers are affected and could inform practice.

Conclusions

Caregivers experience positive and negative reactions to patients’ psychiatric hospitalization. Research is needed to determine which specific characteristics of caregivers and patients are most highly associated with caregiver outcomes, providing a platform for informing interventions and, ultimately, for improving clinical care for patients and their caregivers.