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. 2025 Nov 11;34(6):e70150. doi: 10.1111/inm.70150

Self‐Reported Burden Among Informal Caregivers of Patients Receiving Psychiatric Hospital Treatment: A National Cross‐Sectional Study

Malene Thygesen 1,✉, Berit Kjærside Nielsen 1,2, Trine Ellegaard 3,4, Lise Arnth Nielsen 1, Signe Ruby Hald 1,2, Jens Peter Eckardt 5, Marie Louise Svendsen 1
PMCID: PMC12605679  PMID: 41220246

ABSTRACT

Involving informal caregivers in the support of patients receiving psychiatric treatment has a positive effect on the patient's treatment outcome. At the same time, providing care for these patients may pose a serious burden on the caregivers themselves. The aim of this study was to identify factors associated with a high caregiver burden using a cross‐sectional study design and to determine areas of perceived burden in a thematic analysis based on information from the Danish National Survey of Psychiatric Patient Experiences. Results showed that 54.3% of caregivers reported a high caregiver burden, and the associated factors were: being a parental caregiver for outpatients (adjusted OR: 1.80, 95% CI: 1.17–2.76) as well as inpatients (adjusted OR: 3.81, 95% CI: 1.97–10.51) and diagnosis among outpatients, including affective disorder (adjusted OR: 1.80, 95% CI: 1.34–2.43), anxiety/OCD (adjusted OR: 1.66, 95% CI: 1.14–2.41) and eating disorder (adjusted OR: 3.91, 95% CI: 1.87–8.15). The thematic analysis revealed four areas related to caregiver burden: ‘Emotional burden’, ‘Relational burden’, ‘Implications for everyday life’ and ‘Encountering the health care system’. This study stresses that a large group of informal caregivers feel highly burdened and notify the specific areas of caregiver burden. Targeted interventions are needed to alleviate the burden of informal caregivers and reduce their risk of negative health outcomes.

Keywords: caregiver burden, family involvement, mental health, patient experience, patient satisfaction

1. Introduction

Informal caregivers play a substantial role in the support for patients with mental disorders as they significantly contribute to the patient's well‐being as well as positively affect treatment outcomes (Aldersey and Whitley 2015; Svendsen et al. 2021). However, caregiving for an individual with a mental disorder can be highly demanding and challenging and may often result in a significant burden on the caregivers themselves (Rodríguez‐González and Rodríguez‐Míguez 2020; Balkaran et al. 2021).

Informal caregivers are typically adult family members or peer relatives, such as friends or neighbours who are continuously involved and often play a critical role in providing emotional support, practical assistance and care to their relatives (Aldersey and Whitley 2015). In addition, they may serve as valuable sources of information to health care professionals about the patient's condition (Dirik et al. 2017). Accordingly, research shows that involving an informal caregiver in the care of individuals with mental disorders may contribute to better adherence to medication, reducing psychiatric symptoms and levels of perceived stress. Furthermore, it may diminish the number of relapse events and readmissions to hospitals and improve the individual's general health (Svendsen et al. 2021; Rodolico et al. 2022).

The concept of caregiver burden has recently been defined by Liu et al. as ‘the level of multifaceted strain perceived by the caregiver from caring for a family member and/or loved one over time’ (Liu et al. 2020). Evidence is fragmented but suggests that informal caregiving may lead to a high degree of emotional distress (Poloni et al. 2017; Rachamim et al. 2022), burnout (Onwumere et al. 2018), adverse mental health outcomes (Onwumere et al. 2018; Rahmani et al. 2022), decline in physical health (Adelman et al. 2014), and various other negative outcomes such as strained familial relationships, social isolation (Kuipers et al. 2010) and financial difficulties (Ampalam et al. 2012; Adelman et al. 2014). On the other hand, some studies suggest that involving caregivers in treatment may reduce their psychological distress (Yesufu‐Udechuku et al. 2015) and promote help‐seeking behaviours due to increased knowledge of the illness (Spettigue et al. 2015), leading to improved wellbeing and reduced caregiver burden (Sin et al. 2017).

Several factors that may contribute to or mediate the perception of caregiver burden have been identified in other studies. These include patient characteristics such as age, gender and additional comorbidities (both physical and psychiatric) (Baronet 1999; Ostacher et al. 2008). Caregiver‐related factors including age (Ampalam et al. 2012; Souza et al. 2017; Ayalew et al. 2019), gender (Adelman et al. 2014; Hsiao and Tsai 2015; Yu et al. 2017; Ayalew et al. 2019), socioeconomic status (Padierna et al. 2013; Adelman et al. 2014; Souza et al. 2017; Rahmani et al. 2022) and kin relationship with the patient (Hsiao and Tsai 2015; Souza et al. 2017; Rahmani et al. 2022). Moreover, caregiver burden may be enhanced by factors associated with the disorder itself including the duration of the mental disorder (Ampalam et al. 2012; Shamsaei et al. 2015), the frequency of hospitalisations related to psychiatric issues (Yu et al. 2017), symptom severity (Peng et al. 2022), degree of functional impairment, and presence of neuropsychiatric symptoms (Dos Santos et al. 2017).

So far, factors identifying caregivers at risk of feeling burdened, and on the areas of experienced burden, are generally based on small population samples, different research methodologies, and different health care systems, making the evidence unclear and the clinical guidance vague (Ostacher et al. 2008; Ampalam et al. 2012; Padierna et al. 2013; Adelman et al. 2014; Hsiao and Tsai 2015; Shamsaei et al. 2015; Dos Santos et al. 2017; Poloni et al. 2017; Souza et al. 2017; Yu et al. 2017; Ayalew et al. 2019; Peng et al. 2022; Rahmani et al. 2022). Therefore, exploring factors associated with a high perceived caregiver burden as well as identifying specific areas where this burden manifests, based on self‐reported information from caregivers of patients undergoing treatment in psychiatric hospitals, represents an important addition to existing research to promote targeted interventions for caregivers at risk of a high caregiver burden.

2. Aims of the Study

The objective of this study was to examine factors associated with perceived caregiver burden and the areas of perceived burden among informal caregivers of patients treated in psychiatric hospitals in Denmark.

3. Method

3.1. Study Design and Population

This study utilises data from the Danish National Survey of Psychiatric Patient Experiences, conducted in 2018 and 2021. The survey includes caregivers of individuals aged 18 and older who received psychiatric hospital care as inpatients or outpatients (Witzel et al. 2019). A cross‐sectional design is employed to analyse factors associated with the perceived caregiver burden. The survey includes a free‐text field that enables qualitative analyses, and thematic analysis is applied to identify, analyse, and report areas of perceived caregiver burden (Braun and Clarke 2006).

In Denmark, the publicly funded healthcare system ensures comprehensive coverage for all residents, providing free access to psychiatric hospital care for individuals with mental disorders (Schmidt et al. 2019). The Danish National Survey of Psychiatric Patient Experiences is conducted across all Danish public psychiatric hospitals to monitor and improve care quality from the perspectives of patients and their caregivers. The survey is conducted annually for adult psychiatric patients, and every three years for their caregivers. Data collection occurs during a fixed period, running from weeks 36 to 38 for outpatients and weeks 36–45 for inpatients.

Healthcare professionals follow standardised written guidelines for patient and caregiver inclusion and data collection. Patients are included if they have at least two outpatient contacts before an outpatient contact during weeks 36–38 (outpatients) or have a planned hospital discharge during weeks 36–45 (inpatients), thereby excluding patients with only temporary hospital contacts. Patients are not included if they are unable to participate due to severe psychosis or dementia, moderate to severe mental disability, terminal illness, or being acutely transferred to a somatic hospital. Healthcare professionals distribute paper questionnaires to patients in person and are permitted to help patients understand the questions only upon the patients' specific request. However, they should not influence or directly observe the patients' responses. All items in the questionnaires for patients and caregivers are continuously validated through semi‐structured interviews with hospitalised patients and caregivers. Patients who consent to participate may designate one or two caregivers to be included in the survey, who will then receive the questionnaire by mail. The study population consists of all eligible individuals recorded in the survey during the study period. Both patient and caregiver questionnaires include a unique patient identifier enabling data linkage between patients and caregivers (Witzel et al. 2019; Svendsen et al. 2021; Witzel et al. 2022).

This study uses two questions to assess the perceived caregiver burden. The factors associated with caregiver burden were analysed using a close‐ended question, while the areas of perceived burden were analysed using an open‐ended question. The survey asks caregivers to ‘indicate the degree to which they feel burdened by the patient's problems and difficulties’. Responses are given using a 5‐point scale ranging from ‘Not at all’ to ‘In a very high degree’. An open‐ended follow‐up question provides caregivers with the opportunity to elaborate on specific areas of burden without constraints. These responses are then analysed through thematic analysis to identify themes of perceived caregiver burden. Furthermore, caregivers provide information about their age, gender, relationship to the patient, frequency of hospital contacts, and the duration of inpatient or outpatient care. Information on patient age, gender, and diagnosis is recorded by mental health professionals (2018 survey) or by the patients themselves (2021 survey).

4. Data Analysis

4.1. Statistical Analysis

The 5‐point caregiver burden response scale was dichotomised into high burden (‘very high degree’, ‘high degree’) and low/no burden (‘some degree’, ‘low degree’, ‘not at all’). Baseline characteristics (caregiver age, caregiver gender, relationship to the patient, number of contacts, duration of contacts, and patient age, gender and diagnosis) were categorised as shown in Table 1. Logistic regression was used to explore associations between each characteristic and caregiver burden, adjusting for other variables (caregiver age, caregiver gender, patient and caregiver relationship, patient age, patient gender and patient diagnosis).

TABLE 1.

Descriptive caregiver and patient characteristics (2659 caregivers of 2456 patients).

Characteristics Degree of perceived burden
Outpatient care Inpatient care
Low/None N = 1091 High N = 1197 Low/None N = 123 High N = 248
N (%) N (%) N (%) N (%)
Caregiver age
60 and above 347 (31.8) 379 (31.6) 56 (45.5) 87 (35.1)
40–59 509 (46.7) 648 (54.1) 52 (42.3) 125 (50.4)
< 40 215 (19.7) 155 (13.0) 15 (12.2) 28 (11.3)
Missing 20 (1.8) 15 (1.3) 0 (0.0) 8 (3.2)
Caregiver sex
Male 448 (41.1) 352 (29.4) 45 (36.6) 79 (31.9)
Female 643 (58.9) 844 (70.5) 78 (63.4) 167 (67.3)
Missing 0 (0.0) 1 (0.1) 0 (0.0) 2 (0.8)
Relationship
Partner 420 (38.5) 333 (27.8) 51 (41.5) 65 (26.2)
Parent 444 (40.7) 717 (59.9) 31 (25.2) 124 (50.0)
Son/Daughter 103 (9.4) 63 (5.3) 16 (13.0) 32 (12.9)
Sibling 54 (5.0) 55 (4.6) 5 (4.1) 12 (4.8)
Other relation 70 (6.4) 28 (2.3) 18 (14.6) 12 (4.8)
Missing 0 (0.0) 1 (0.1) 2 (1.6) 3 (1.2)
Number of contacts
0 213 (19.5) 213 (17.8) 13 (10.6) 21 (8.5)
1–2 271 (24.8) 319 (26.7) 36 (29.3) 81 (32.7)
3–5 241 (22.1) 261 (21.8) 45 (36.6) 66 (26.6)
6–10 160 (14.7) 152 (12.7) 16 (13.0) 34 (13.7)
> 10 168 (15.4) 209 (17.5) 11 (8.9) 39 (15.7)
Missing 38 (3.5) 43 (3.6) 2 (1.6) 7 (2.8)
Patient age
< 40 506 (46.4) 614 (51.3) 41 (33.3) 109 (44.0)
40–59 206 (18.9) 192 (16.0) 29 (23.6) 59 (23.8)
60 and above 157 (14.4) 89 (7.4) 40 (32.5) 43 (17.3)
Missing 222 (20.4) 302 (25.2) 13 (10.6) 37 (14.9)
Patient sex
Male 267 (24.5) 357 (29.8) 50 (40.7) 83 (33.5)
Female 598 (54.8) 526 (43.9) 60 (48.8) 121 (48.8)
Missing 226 (20.7) 314 (26.2) 13 (10.6) 44 (17.7)
Patient diagnosis
Schizophrenia 326 (29.9) 348 (29.1) 19 (15.5) 48 (19.4)
Affective disorder 274 (25.1) 278 (23.2) 56 (45.5) 85 (34.3)
Anxiety/OCD etc. 99 (9.1) 115 (9.6) 8 (6.5) 19 (7.7)
Eating disorder 16 (1.5) 46 (3.8) — —
Personality disorder 112 (10.3) 97 (8.1) 7 (5.7) 6 (2.4)
Other diagnosis a 143 (13.1) 148 (12.4) 11 (8.9) 38 (15.3)
Missing 121 (11.1) 165 (13.8) — —
Duration of outpatient contact
Over 3 years 215 (19.7) 174 (14.5)
1–3 years 341 (31.3) 331 (27.7)
4–12 months 321 (29.4) 432 (36.1)
0–3 months 115 (10.5) 132 (11.0)
Missing 99 (9.1) 128 (10.7)
Duration of inpatient contact
More than 2 months 15 (12.2) 44 (17.7)
1–2 months 21 (17.1) 46 (18.6)
3–4 weeks 26 (21.1) 65 (26.2)
1–2 weeks 30 (24.4) 43 (17.3)
4–6 days 9 (7.3) 12 (4.8)
Less than 4 days 10 (8.1) 21 (8.5)
Missing 12 (9.8) 17 (6.9)
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a

Includes for example, Dementia, Double diagnosis, Diagnosis undecided.

To address clustering among patients with multiple caregivers (8.3%) the Huber Sandwich Estimator was applied. All analyses were performed using complete‐case data with a significance level of 0.05 and two‐tailed testing. Sensitivity analyses were conducted separately for 2018 and 2021 to assess potential differences, including the impact of COVID‐19 and to determine whether data could be pooled. Analyses were conducted using STATA 17 (College Station, TX: StataCorp LLC).

4.2. Thematic Analysis

An interpretive methodological approach inspired by Braun and Clarke (2006) was adopted for thematic analysis of free‐text comments on perceived caregiver burden. The comments, rich in detail and nuance, were analysed inductively using a codebook approach, as described by Braun and Clarke. A semantic framework was used for coding and analysing the data.

A stratified random sample of 200 comments was selected based on the degree of burden, year of the questionnaire and inpatient/outpatient status. Each member of the research team (M.T., M.L.S., B.K.N., T.E., S.R.H.) independently identified preliminary codes from this sample. These codes formed the basis of a codebook, which was iteratively refined through two test‐coding rounds. Codes were compared, clustered and adjusted through team discussions. After finalising the codebook, S.R.H. coded all comments, consulting M.T. to resolve uncertainties. The fully coded material was presented to and reviewed by the research team, resulting in the conceptualisation of four overarching themes and corresponding sub‐themes. The themes encapsulated the areas of caregiver burden as described by participants and extended the analysis from a descriptive to an interpretive level, facilitating deeper conceptual understanding. This process integrated findings from the cross‐sectional study and existing research. To ensure respondent anonymity and confidentiality, composite quotes were used and identifying details were excluded. Coding process was conducted using NVivo 14 software (QSR International, Melbourne, Australia).

4.3. Advisory Group

At two meetings, results of the cross‐sectional study and thematic analysis were presented to and discussed with a multi‐stakeholder advisory group comprising members from mental health organisations, non‐governmental organisations, caregiver organisations, psychiatric healthcare professionals and informal caregivers. Feedback and perspectives from the group were incorporated to validate the findings and ensure their relevance.

5. Results

In 2018 and 2021, a total of 7473 caregivers of 6376 patients were invited to participate in the Danish National Survey of Psychiatric Patient Experiences, and 37% (n = 2792) of the caregivers responded to the survey. Among the responding caregivers, 86% (n = 2404) cared for outpatients while the remaining 14% (n = 388) were caregivers of inpatients (Figure S1). Most caregivers responded to the question concerning perceived burden (95.2%) and the open‐ended question about specific areas of perceived burden (70.0%).

5.1. Factors Related to a High Caregiver Burden

A total of 52.3% (outpatients) and 66.8% (inpatients) of the caregivers experienced a high degree of burden (Figure S1). Compared with caregivers experiencing low burden, these caregivers were more often females, between 40 and 59 years old and parents (Table 1). Table 2 shows that being a parent compared with being a partner was statistically significantly associated with higher caregiver burden after adjusting for the remaining caregiver and patient characteristics (outpatients, adjusted OR: 1.80, 95% CI: 1.17–2.76 and inpatients, adjusted OR: 3.81, 95% CI: 1.97–10.51). On the other hand, having an ‘other relation’ than being a first‐degree relative was statistically significantly associated with lower caregiver burden among caregivers of outpatients (adjusted OR: 0.46, 95% CI: 0.25–0.82). Several diagnosis‐related groups among outpatients were related to a higher caregiver burden compared with schizophrenia, i.e., affective disorder (adjusted OR: 1.80, 95% CI: 1.34–2.43), anxiety/OCD (adjusted OR: 1.66, 95% CI: 1.14–2.41), other diagnosis (adjusted OR: 1.44, 95% CI: 1.03–2.02), and eating disorder which was the disorder most strongly associated with a high caregiver burden (adjusted OR: 3.91, 95% CI: 1.87–8.15). Furthermore, an outpatient contact duration between 4 and 12 months was statistically significantly associated with increased caregiver burden (adjusted OR: 1.47, 95% CI: 1.06–2.03) whereas caregivers of female outpatients (adjusted OR: 0.69, 95% CI: 0.54–0.87) and outpatients aged 60 and above (adjusted OR: 0.50, 95% CI: 0.28–0.89) felt less burdened. All associations focusing on caregivers of inpatients were non‐significant except for the caregiver‐patient relationship.

TABLE 2.

Association between caregiver, patient and disease characteristics and a high degree of perceived burden.

Characteristics High degree of perceived burden
Outpatient care Inpatient care
N (%) Crude OR (95% CI) Adjusted OR (95% CI) a N (%) Crude OR (95% CI) Adjusted OR (95% CI) a
Caregiver age
60 and above 379 (52.2) Reference group Reference group 87 (60.8) Reference group Reference group
40–59 648 (56.0) 1.17 (0.97–1.41) 0.97 (0.74–1.27) 125 (70.6) 1.55 (0.96–2.50) 1.46 (0.72–2.96)
< 40 155 (41.9) 0.66 (0.51–0.85) 0.82 (0.49–1.36) 28 (65.1) 1.20 (0.57–2.53) 2.29 (0.67–7.93)
Caregiver sex
Male 352 (44.0) Reference group Reference group 79 (63.7) Reference group Reference group
Female 844 (56.8) 1.67 (1.41–1.98) 1.19 (0.93–1.52) 167 (68.2) 1.22 (0.78–1.91) 0.88 (0.46–1.68)
Relationship
Partner 333 (44.2) Reference group Reference group 65 (56.0) Reference group Reference group
Parent 717 (61.8) 2.04 (1.69–2.46) 1.80 (1.17–2.76) 124 (80.0) 3.14 (1.81–5.45) 3.81 (1.97–10.5)
Son/daughter 63 (37.9) 0.77 (0.55–1.09) 0.87 (0.50–1.53) 32 (66.7) 1.57 (0.77–3.21) 1.84 (0.64–5.30)
Sibling 55 (50.5) 1.28 (0.85–1.93) 1.39 (0.84–2.31) 12 (70.6) 1.88 (0.62–5.69) 1.65 (0.36–7.51)
Other relation 28 (28.6) 0.50 (0.32–0.79) 0.46 (0.25–0.82) 12 (40.0) 0.52 (0.23–1.19) 0.35 (0.09–1.29)
Number of contacts
0 213 (50.0) Reference group Reference group 21 (61.8) Reference group Reference group
1–2 319 (54.1) 1.18 (0.92–1.51) 0.95 (0.69–1.31) 81 (69.2) 1.39 (0.63–3.09) 1.17 (0.44–3.08)
3–5 261 (52.0) 1.08 (0.84–1.40) 0.90 (0.65–1.25) 66 (59.5) 0.91 (0.41–2.03) 0.98 (0.35–2.74)
6–10 152 (48.7) 0.95 (0.71–1.27) 0.85 (0.58–1.25) 34 (68.0) 1.32 (0.51–3.36) 1.20 (0.34–4.18)
Over 10 209 (55.4) 1.24 (0.94–1.64) 1.14 (0.69–1.31) 39 (78.0) 2.19 (0.80–6.03) 1.75 (0.50–6.10)
Patient age
< 40 614 (54.8) Reference group Reference group 109 (72.7) Reference group Reference group
40–59 192 (48.2) 0.77 (0.61–0.97) 0.87 (0.61–1.24) 59 (67.1) 0.77 (0.42–1.40) 2.05 (0.82–5.12)
60 and above 89 (36.2) 0.47 (0.35–0.62) 0.50 (0.28–0.89) 43 (51.8) 0.40 (0.23–0.72) 1.34 (0.39–4.62)
Patient sex
Male 357 (57.2) Reference group Reference group 83 (62.4) Reference group Reference group
Female 526 (46.8) 0.66 (0.54–0.80) 0.69 (0.54–0.87) 121 (66.9) 1.21 (0.74–1.99) 1.15 (0.63–2.10)
Patient diagnosis
Schizophrenia 348 (51.6) Reference group Reference group 48 (71.6) Reference group Reference group
Affective disorder 278 (50.4) 0.95 (0.76–1.19) 1.80 (1.34–2.43) 85 (60.3) 0.60 (0.31–1.16) 0.85 (0.38–1.90)
Anxiety/OCD etc. 115 (53.7) 1.09 (0.79–1.49) 1.66 (1.14–2.41) 19 (70.4) 0.94 (0.32–2.78) 1.67 (0.47–5.89)
Eating disorder 46 (74.2) 2.69 (1.43–5.07) 3.91 (1.87–8.15) — — —
Personality disorder 97 (46.2) 0.81 (0.59–1.11) 1.17 (0.78–1.74) 6 (46.2) 0.34 (0.1–1.15) 0.51 (0.11–2.31)
Other diagnosis 148 (50.9) 0.97 (0.73–1.28) 1.44 (1.03–2.02) 38 (77.6) 1.37 (0.57–3.27) 1.23 (0.45–3.37)
Duration of contact
Over 3 years 174 (44.7) Reference group Reference group
1–3 years 331 (49.3) 1.20 (0.93–1.55) 1.11 (0.81–1.53)
4–12 months 432 (57.4) 1.66 (1.29–2.14) 1.47 (1.06–2.03)
0–3 months 132 (53.4) 1.42 (1.03–1.96) 1.23 (0.81–1.86)
Duration of contact
More than 2 months 44 (74.6) Reference group Reference group
1–2 months 46 (68.7) 0.75 (0.33–1.70) 1.21 (0.46–3.14)
3–4 weeks 65 (71.4) 0.85 (0.39–1.86) 1.48 (0.58–3.77)
1–2 weeks 43 (58.9) 0.49 (0.22–1.08) 1.14 (0.44–2.99)
4–6 days 12 (57.1) 0.45 (0.15–1.36) 0.68 (0.19–2.45)
Less than 4 days 21 (67.7) 0.72 (0.26–1.97) 0.97 (0.29–3.22)
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a

Adjusted for caregiver age, caregiver sex, patient age, patient sex, patient diagnosis, relationship.

The sensitivity analysis, adjusting for each of the remaining factors individually, showed that the patient‐caregiver relationship (e.g., parent) may impact several of the analysed associations. As an example, the association between caregiving for patients diagnosed with affective disorders compared with schizophrenia and high caregiver burden changed from statistically insignificant (unadjusted OR: 0.95, 95% CI: 0.76–1.19) to statistically significant when adjustment was made for the patient‐caregiver relationship (adjusted OR: 1.38, 95% CI: 1.07–1.77). Sensitivity analyses for each year (2018 and 2021) separately demonstrated that the results followed the same trend.

5.2. Specific Areas of Caregiver Burden

A total of 1955 comments were included in the thematic analysis, from which four overall themes specifying in which areas the caregivers feel burdened and their related subthemes were identified: (1) ‘Emotional burden’, (2) ‘Relational burden’, (3) ‘Implications for everyday life’ and (4) ‘Encountering the health care system’. Themes and related subthemes are presented in Table 3.

TABLE 3.

Themes generation to identify in which areas caregivers feel burdened.

Illustrating quotes Codes Themes Sub‐themes
I am constantly on guard. I never turn my phone off in case she needs to talk to me. I am always close to my car in case I need to pick her up

  • Emotional responsibility

 1. Emotional burden (i) Concern
I am afraid of suicide and my daughters future. I am sad that she does not have a ‘proper’ youth. I am afraid if she will ever be able to finish an education, get a job and live a normal social life

  • Concern for the future

 (ii) Hopelessness
It is a great sorrow to see your child being tormented and lonely

  • Grief and hopelessness

 (iii) Powerlessness
I have thoughts about my daughters childhood, could it have been better? Could I have done something different? Is it my fault that she has suicidal thoughts?

  • Guilt

 (iv) Feeling alone
I am very worried/anxious when my brother has a relapse. And stressed out. I feel that I should do more. I feel great responsibility towards him and all the things that has to be done in his life. I am not sure if he gets the right help. I feel inadequate and worry if I should act differently towards him

  • Emotional influence

 (v) Grief and loss
(vi) Guilt
He is my brother. We used to be very close. His problems affect me and our family very much

  • Impact on close relationships

 2. Relational burden (i)Alteration in relationships
(ii) Conflicts
(iii) Impact on family dynamics
In addition to being a parent to a sick son, I have to be responsible for his medicine, meetings, laundry, cleaning etc.

  • Practical burden

 3. Implications for everyday life (i)To be available 24/7
(ii) Practical burden
In difficult periods I do not have energy to friends or my own hobbies. Until symptoms of disease are better, everything is on hold

  • Impact on the caregiver's own life

 (iii) Social constraints

(iv) Work‐related and economic

constraints

There is a significant lack of consistency in the treatment process

  • Discontent with treatment

 4. Encountering the health care system (i) Discontent with treatment
I know my son best, but I am not involved in his treatment at all

  • Collaboration and involvement

 (ii) Lack of collaboration and involvement
We could have used some support in relation to his disease, his treatment options and how to support him without becoming completely depleted ourselves

  • Lack of support for being a caregiver

 (iii) Excessive burden of responsibility and lack of support
I really need support, I am the one who has to be available 24/7

  • Lack of support for caregivers' own burden

 (iv) Dissatisfaction with sector transitions
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5.3. Emotional Burden

One of the most comprehensive themes identified was related to the psychological and emotional aspects of being a caregiver. This theme ‘Emotional burden’ encompasses six subthemes: (i) Concern, (ii) Hopelessness, (iii) Powerlessness, (iv) Feeling alone, (v) Grief and loss and (vi) Guilt.

The subtheme Concern includes a broad spectrum of worries starting with a general worry for the patient related to the disease or its immediate consequences such as isolation and disruption of normal daily life. This extends to deeper concerns about the future. Even in times when the patient is feeling better, caregivers worry about possible relapses or the patient's prospects after treatment ends. Many caregivers, especially parents, also express concern about the patient's prospects in relation to education, employment opportunities, starting a family, or what will happen when they can no longer take care of the patient. Some caregivers even express a feeling of hopelessness in relation to the patient's disease and whether the situation will ever improve. They often feel powerless in relation to the disease and want to help the patient feel better, but it seems like nothing helps or they are unsure how they can help. Several caregivers express that they are feeling alone in their role of caregiver, lacking support and understanding from society as they single‐handedly manage the patient's problems while coping with their own concerns. Some caregivers express feelings of grief and loss. The patient may no longer be the same person as he or she used to be, which may convey a deep sense of sorrow and loss of a loved one while at the same time the caregiver may grieve about how life has changed due to the patient's difficulties. Finally, several caregivers, especially parents, feel guilty about the patient's disease, worrying that it may be their fault or whether they could have prevented it. On the other hand, others feel guilty because they feel incapable of taking care of their sick relative or uncertain about whether they are providing enough help.

I feel emotionally burdened, when my daughter calls me because she feels bad, and I must calm her down. I am emotionally affected all the time. I feel powerless. I get the thought if she will ever be well again and continue her education. Of course, no one feels good when their child is not well, but this is scary, you can't fix it like if it was a broken leg.

5.4. Relational Burden

The second theme encompasses how the patient's difficulties negatively affect the relationship with the closest relatives and consequently impose a burden on the caregiver. The theme Relational burden includes three subthemes: (i) Alteration in relationships, (ii) Conflicts and (iii) Impact on family dynamics.

The subtheme, Alteration in relationships, concerns how the patient's difficulties may cause a change of roles in the relationship between the patient and the caregiver. Several caregivers express how they are highly affected by this new role in the relationship. It may be a partner who becomes more of a parent to the patient rather than being an equal partner, or a parent who may have to act as the patient's therapist. Many caregivers describe how numerous conflicts negatively influence their relationship with the patient. For instance, having a child with an eating disorder often leads to tensions during family meals. Other patients may easily feel criticised by the caregiver, which makes caregivers feel that they must be careful of what they say to the patient to avoid anger and difficult conflicts. In addition, some caregivers describe how the patient's disease has a wider impact on family dynamics. It is not only the relation between the patient and the main caregiver, such as the parent or the partner, that will be affected. The disease affects all members of the family and may also have serious consequences for the well‐being of the patient's children or siblings in a family.

My husband's difficulties have been the focal point of our marriage and the family for more than five years and we are all completely devastated. It is difficult to continue keeping the family together because the disease dominates all our lives.

5.5. Implications for Everyday Life

The theme Implications for everyday life relates to the limitations and consequences that the patient's difficulties may pose on the caregiver's own life and includes four subthemes: (i) To be available 24/7, (ii) Practical burden, (iii) Social constraints and (iv) Work‐related and economic constraints.

Many caregivers express a feeling of being available 24/7 for the patient. They describe how the patients may contact them to unload their worries, anxious or bizarre thoughts, sometimes several times a day. They also feel a sense of constant vigilance and responsibility in case the patient's condition deteriorates or if the patient experiences suicidal thoughts. In addition, several caregivers mention how the patient's difficulties may impose a practical burden on them as they are responsible for all practical tasks such as shopping, cooking and cleaning as well as disease‐related tasks such as coordination of doctor visits, appointments with authorities and medicine. The patient's difficulties and the many practical tasks may also result in social constraints on the caregiver's own life. Some caregivers describe that they can never leave the patient alone to participate in social arrangements or that they simply do not have surplus energy anymore for their own hobbies or social relations. Finally, the patient's disease may cause work‐related and economic constraints for the caregiver. Some caregivers describe that they must work fewer hours or be on sick leave to cope with the circumstances of the disease, and that they experience economic difficulties either because of sick leave, changes in the patient's economic situation, or because they must support the patient financially.

I feel burdened in all areas. I am involved in all everyday activities. I take care of shopping, cleaning, laundering, the patient's personal finances, contact psychiatry, the doctor, municipal authority, dentist etc. and I am responsible for the patient's medicine. There is also the 24/7 psychological burden because I must be reachable all the time. I cannot take time off; I cannot go on holiday. My financial situation is poor because the patient has had a bad economy for many years. My life is full of constraints.

5.6. Encountering the Health Care System

The last theme Encountering the health care system relates to the course of disease and the meeting with the health care system and includes four subthemes: (i) Discontent with treatment, (ii) Lack of collaboration and involvement, (iii) Excessive burden of responsibility and lack of support and (iv) Dissatisfaction with sector transitions.

Many caregivers express discontent with treatment, which is often due to concerns about the accuracy of diagnosis and medication and a lack of non‐pharmacological treatment. Moreover, caregivers are frustrated or worried about early hospital discharges. Many caregivers also mention a lack of collaboration and involvement in patient care. They feel that they have valuable knowledge about the patient, but they are not involved in or informed of the treatment process by the health professionals. On the other hand, some caregivers describe an excessive burden of responsibility and lack of support from the health care system. They are extensively involved in the patient's disease in everyday life but lack essential information about the disease, its treatment, and how they can support the patient effectively. Finally, many caregivers express dissatisfaction with sector transitions. They describe that there is a lack of coordination between the different sectors—psychiatry, municipal authorities and general practitioners. They often experience that there is no immediate plan when the primary health care sector is supposed to take over after hospital discharge and a lack of understanding of the implications of the disease post‐discharge.

I am frustrated that she doesn't get the help that she needs. I feel that I have been totally alone when she has suicidal thoughts. I need to understand her disease and how I can support her. This is the first time anyone has shown interest in me during my wife's course of disease.

6. Discussion

In this nationwide study, 54.3% of informal caregivers to adult patients with a broad spectrum of mental disorders experienced a high caregiver burden. The caregiver–patient relationship was found to be a critical factor influencing the level of perceived burden and, specifically, being a parental caregiver was significantly associated with a high burden. Drawing from the information given by 1955 caregivers, four areas related to caregiver burden were identified. These were the areas of ‘emotional burden’, ‘relational burden’, ‘implications for everyday life’ and ‘the encounter with the health care system’. A parental caregiver will most often be affected by all these areas, which may contribute to the clear association between being a parental caregiver and a high caregiver burden. To our knowledge, this study is one of the first to assess the caregiver burden in psychiatric hospitals across various units and diagnoses and thereby elucidate differences in perceived caregiver burden.

The prevalence of high caregiver burden (54.3%) demonstrated in this study is notably higher compared to other studies (Rahmani et al. 2022). This difference may be explained by several factors including variation in measurement tools and cut‐off points utilised in previous studies to assess high caregiver burden (Karambelas et al. 2022). Additionally, differences in the study populations may play a role, particularly in terms of caregiver and patient characteristics such as patient diagnosis and caregiver‐patient relationship. Several factors associated with high caregiver burden are demonstrated in this study. Being a parental caregiver is related to a high level of caregiver burden, especially among caregivers of individuals receiving inpatient care. This suggests that, compared to other types of caregiver‐patient relationships, parents who are caring for their mentally ill adult children may experience more difficulties and strain (Hsiao and Tsai 2015; Souza et al. 2017; Rahmani et al. 2022). Previous research indicates that parental caregivers may worry more about their children's future, including who will take over their caregiving role when they can no longer manage (Li et al. 2007) and that parents experience a profound sense of grief and loss associated with the decline in their children's functional abilities (Godress et al. 2005). The importance of the closeness of the caregiver‐patient relationship is emphasised further by our findings demonstrating that caregivers of outpatients who are not first‐degree relatives have lower odds of feeling highly burdened. Previous studies suggest that the burden of caregiving is notably high for caregivers of schizophrenia patients (Cham et al. 2022; Rahmani et al. 2022). However, our study found that caring for outpatients with affective disorders, anxiety/OCD, other diagnoses, and in particular eating disorders was associated with a higher caregiver burden compared to caring for patients with schizophrenia. One possible explanation is that patients who experience more severe symptoms of schizophrenia may not have any designated caregivers, resulting in fewer responses from this group of caregivers. Another explanation might be the comprehensive effort in Denmark to include patients with first‐episode schizophrenia spectrum disorder in a specialised early intervention treatment. The course of treatment consists of assertive community treatment, family and informal caregiver involvement and psychoeducation (Starzer et al. 2023) and includes a level of support not available for patients with other psychiatric diagnoses in Denmark. Our results, that caregivers of female outpatients felt less burdened compared to caregivers of male outpatients, are supported by other studies demonstrating that caregivers of male patients experience more distress compared to those of female patients (Mors et al. 1992). In our study, female outpatients constituted 49% compared to 27% male outpatients. A possible explanation is that there is a gender difference in psychiatric treatment (Wahto and Swift 2016) which indicates that men may be undertreated, and the ones that are treated may have more severe symptoms. Likewise, caregivers of outpatients aged 60 and above felt less burdened compared to caregivers of younger patients. This result has also been shown in other studies (Cham et al. 2022) and may emphasise the point that parental caregivers feel a higher burden.

In this study, we identified four areas related to the caregiver's perception of burden. A significant number of caregivers reported that they experienced an ‘emotional burden’, which encompasses a broad spectrum of worries ranging from general worries and extending to concerns regarding the future. Also, caregivers of individuals with psychiatric conditions are frequently in a heightened state of alert. The condition of the illness often fluctuates, leading to caregivers feeling constantly alert when the patient is unwell, and remaining vigilant during periods when the patient's condition improves in case it worsens again. Concurrent with previous research, caregivers appear to be left in a state of emotional uncertainty due to the unpredictable and changing nature of the illness trajectories (Karp and Tanarugsachock 2000). Caregivers also experienced feelings of hopelessness, powerlessness, and guilt along with feelings of sadness and loss of a loved one who may have serious changes in personality. Other studies have found that caregivers may even experience grief like what is commonly observed after the death of a loved one (Rachamim et al. 2022) but since the person is still physically present, their loss may not be acknowledged by society and, as a result, they hide their grief reactions (Boss 2007; Doka 2008). Caregivers' negative emotions and hidden grief may result in withdrawing themselves from others, leading to a feeling of isolation (Doka 2008; Shiraishi and Reilly 2019). Many of the respondent caregivers in this study expressed that they experienced a ‘relational burden’, which involves challenges related to the caregiver and patient relationship. These findings are supported by previous studies showing that frequent disagreements and conflicts between caregivers and patients may affect their relationship as well as family dynamics and functioning and lead to a high caregiver burden (Sreeja 2013). Caregiving for a patient with a mental illness may also have serious ‘implications for the everyday life’ of the caregiver. Many caregivers stated how the patient's difficulties required constant availability or managing a significant number of practical tasks for the patient, leading to extensive limitations of their own life because most of their resources are dedicated to taking care of the patient. Similar findings have been observed in other studies (Adelman et al. 2014) and particularly financial difficulties have been reported as having a major impact on perceived burden (Sreeja 2013; von Kardorff et al. 2016). Caregivers also described how ‘encountering the health care system’ results in a high burden. Several other studies have demonstrated similar findings (Weimand et al. 2011; Skundberg Kletthagen 2015) and a recent review of 14 qualitative studies indicated that it is of great importance that caregivers of psychiatric patients receive more information from the health care professionals about the patient's condition and that they are more involved in relation to treatment decisions (Aslerin and Tingleff 2021) as lack of involvement may increase caregiver burden (Cleary et al. 2020).

A high caregiver burden may lead to significant health consequences for the caregiver (Ampalam et al. 2012) including burnout (Onwumere et al. 2018), depression (Sallim et al. 2015), anxiety (Del‐Pino‐Casado et al. 2021) and posttraumatic stress symptoms among informal caregivers. Our findings provide evidence to support the targeting of interventions to alleviate the burden of informal caregivers and reduce their risk of negative health outcomes.

6.1. Strengths and Limitations

An important strength of this study lies in its utilisation of comprehensive, nationwide data derived from individuals and their caregivers across all psychiatric hospitals in Denmark, which enhances the generalisability of our findings. The cross‐sectional design of the study is appropriate for identifying associations between patient and caregiver characteristics and the perceived burden at a specific point in time. Although causality cannot be inferred, the cross‐sectional approach is suitable for descriptive and exploratory purposes. The inclusion of a free‐text field and application of thematic analysis adds richness and context to the findings. Another strength of the study is that all results were presented for an advisory group consisting of informal caregivers of psychiatric patients, members from mental health organisations, organisations for caregivers and health professionals from psychiatric care to provide a multifaceted practice‐oriented discussion of the results. However, there are also several limitations worth acknowledging. A major drawback is related to the timing of data collection from outpatients and their caregivers, which did not account for variations in the patients' condition over time. Most likely, this may lead to increased variation and the risk of statistically insignificant results. Inclusion of inpatients is limited to cases where their discharge is planned, ensuring a more consistent clinical stage for their disorder. Furthermore, a large number of patients and caregivers contributed to data, raising concerns about response errors and misclassification. It is plausible that such misclassification is nondifferential, leading to potential bias in the results, favouring null results, ultimately weakening the strength of the association. Another challenge arises from the observational nature of our study, which complicates establishing causal relationships in the observed associations. It remains plausible that unmeasured confounding variables, such as the caregiver's own mental health status or socio‐economic factors, might have influenced the observed associations with the degree of perceived caregiver burden. Finally, it may influence the generalisability of the results that only answers from informal caregivers appointed by patients are included, which means that some caregivers may not have had the opportunity to answer the survey.

7. Conclusions

In conclusion, the results of this study showed that more than half of informal caregivers for patients in psychiatric hospitals feel highly burdened, particularly parental caregivers and those caring for younger patients, male patients, or patients diagnosed with eating disorders. Major stressors included the emotional burden, strained relationships, disruption of daily life and difficulties in navigating the healthcare system.

Our findings highlight a significant public health concern arising from the large number of caregivers experiencing high levels of burden across diverse psychiatric diagnoses and emphasise the urgent need to incorporate caregiver support into mental health service planning and delivery. Failure to address their needs may not only increase the caregivers' risk of negative health outcomes but may also hinder patient recovery. Therefore, targeted interventions are needed to alleviate the burden of informal caregivers and may include the incorporation of formal caregiver assessment tools into psychiatric care plans, more psychoeducation, funded care programs to provide shorter periods of relief for caregivers, increased accessibility to caregiver support groups and information about navigating the healthcare system. Furthermore, our findings highlight the need for further research to examine the level of support and involvement experienced by caregivers in the treatment process of patients in psychiatric hospitals and its impact on perceived caregiver burden.

8. Relevance for Clinical Practice

Growing evidence shows that the involvement of informal caregivers in psychiatric care has a positive impact on patients' prognosis and wellbeing. However, providing care for psychiatric patients can be highly demanding and challenging for some caregivers and may result in various negative outcomes such as a high degree of emotional distress, burnout, adverse mental health outcomes and decline in physical health. This emphasises the need to characterise caregivers at risk of feeling a high burden and identify the areas in which they feel burdened, to provide support and targeted interventions to caregivers for the benefit of both caregivers and patients.

Author Contributions

All authors involved in this manuscript meet the authorship criteria. M.L.S., B.K.N., T.E., L.A.N. and J.P.E. contributed to the conception or design of the study. M.T., B.K.N., T.E., L.A.N., S.R.H., J.P.E. and M.L.S. contributed to the acquisition, analysis, or interpretation of data obtained for the work. M.T. wrote the draft for the manuscript and did the final write‐up. All authors critically reviewed the manuscript and finally approved the version to be published. All authors agreed to be accountable for all aspects of this work, ensuring data integrity and accuracy.

Conflicts of Interest

The authors declare no conflicts of interest.

Supporting information

Figure S1: Flowchart (2018 and 2021).

INM-34-0-s001.docx (49.4KB, docx)

Acknowledgements

We would like to acknowledge and thank our advisory group, consisting of members from mental health organisations, organisations for caregivers, health professionals from psychiatric care, and informal caregivers of psychiatric patients for valuable discussions and validating the results. Also, we would like to acknowledge the Health Research Foundation of Central Denmark Region for funding this study.

Thygesen, M. , Nielsen B. K., Ellegaard T., et al. 2025. “Self‐Reported Burden Among Informal Caregivers of Patients Receiving Psychiatric Hospital Treatment: A National Cross‐Sectional Study.” International Journal of Mental Health Nursing 34, no. 6: e70150. 10.1111/inm.70150.

Funding: This work was supported by Health Research Foundation of Central Denmark Region.

Data Availability Statement

Research data are not shared.

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Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Supplementary Materials

Figure S1: Flowchart (2018 and 2021).

INM-34-0-s001.docx (49.4KB, docx)

Data Availability Statement

Research data are not shared.

Articles from International Journal of Mental Health Nursing are provided here courtesy of Wiley

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