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Keywords:

  • clinical diseases;
  • family burden;
  • family environment;
  • panic disorder

Abstract

  1. Top of page
  2. Abstract
  3. Method
  4. Results
  5. Discussion
  6. Acknowledgments
  7. References

Aims

The objective of this study was to compare the family burden and environment of patients with panic disorder (PD) with those of a control group composed of relatives of patients with clinical diseases.

Methods

A cross-sectional study was performed with 67 relatives of patients with PD, and 66 family members of patients with clinical diseases. All patients were administered a set of instruments to assess family burden and environment.

Results

Multivariate analyses revealed significant between-group differences on measurements of objective and subjective burden, both of which can be influenced by kinship, since higher levels of family burden tend to be reported by the children of the affected individual. Levels of family burden also tend to be associated with the severity of PD symptoms.

Conclusions

The assessment of family burden may be useful in developing family-focused therapeutic strategies and may contribute to the improvement of patient outcomes.

The impact of chronic diseases on the family environment can have a decisive influence on the course and prognosis of these conditions,[1] as disease evolution has been found to be influenced by both family-related risk and protective factors.[2] The presence of chronic physical or mental disorders is also a significant contributor to family burden, which can be understood as the emotional and financial stresses experienced by the families of chronically ill patients.[3]

Most studies of family burden among mental health clients limit their focus to common mental disorders, such as schizophrenia, and point to the fact that all areas of family functioning are affected by the presence of the disease.[4, 5] However, recent studies, such as a review of caregiver burden in anxiety disorders, have also addressed the impact of obsessive–compulsive disorder (OCD) and post-traumatic stress disorder (PTSD) on patient families.[6] A study of family burden in OCD revealed similar results to those obtained for patients with schizophrenia, and found that family support may have significant repercussions for the prognosis and treatment outcomes of OCD.[7] Another recent study on family accommodation and OCD reported a high prevalence of accommodating behaviors in patient families.[8] Studies of PTSD generally involve the families of war veterans, and tend to find that the wives and children of patients with this disorder tend to report the highest levels of burden, as well as high rates of hostility and domestic violence.[9] However, the previously cited review did not discuss any studies on the correlation between family burden and panic disorder (PD).[6]

The characteristic symptoms of PD, especially anticipatory anxiety, the avoidance of certain places and situations due to the fear of experiencing panic attacks, and the loss of autonomy, lead to increased dependence on family members.[10] PD is also a chronic illness[11] whose symptoms have a negative influence on psychosocial functioning.[12]

Comparative studies of the family burden and family environment profiles reported by the caregivers of patients with clinical diseases versus caretakers of individuals with psychiatric disorders are still rare in the literature. A recent study compared burden levels between the caregivers of patients with mental disorders (schizophrenia, mood disorders and substance abuse) with those of a group of patients with clinical diseases (diabetes mellitus, arthritis and lung disease). The study found that the former group reported higher levels of subjective burden.[13] Similar results were found in another study involving patients with somatic diseases and individuals with mental disorders and somatic comorbidities.[14] However, both studies are limited due to a lack of representativeness of the caregiver population, and emphasize the need for further research comparing the levels of burden reported by individuals involved in the care of family members diagnosed with different illnesses.

Studies involving the families of patients with cardiovascular, metabolic, neoplastic, inflammatory and degenerative diseases have found that these illnesses have negative effects on the quality of life of family caregivers,[1, 15] and tend to increase reported burden levels[13] and generate conflicts in the family environment.[15] Other studies have also found that the family caretakers of patients with chronic diseases are more likely to present with mood disorders, such as anxiety and depression, and report higher levels of stress than the general population.[16, 17]

The present study aimed to assess whether the family environment and levels of burden reported by the family members of patients with a PD differ from those observed in the family members of patients with chronic clinical diseases. The correlation between family burden and environment and the sociodemographic and clinical characteristics of patients with PD were also assessed.

Method

  1. Top of page
  2. Abstract
  3. Method
  4. Results
  5. Discussion
  6. Acknowledgments
  7. References

Participants

The sample was convenience-based and composed of the family members of patients with a diagnosis of PD with or without agoraphobia, and a control group comprising the family members of patients with clinical diseases, such as diabetes mellitus type 2 (DM2), systemic arterial hypertension (SAH) and heart disease. The following inclusion criteria were applied: aged 20–70 years; being literate; and being a first- or second-degree relative of the patient and living in the same home as the patient. Patients with comorbid PD were excluded from the control group. The study was carried out in 2012 and was approved by the Research Ethics Committee of the Hospital de Clínicas de Porto Alegre (n°110109). All family members and patients provided written informed consent prior to participation in the study.

Medical records were reviewed to identify patients who met inclusion criteria. These individuals were then invited for an individual interview, in which the diagnosis of PD was confirmed using the Mini International Neuropsychiatric Interview (MINI).[18] Patients in both groups were receiving outpatient treatment at the time of the study. PD patients were receiving individual clinical care or cognitive-behavioral group therapy. The diagnostic interview was conducted during their regular appointment at the general hospital outpatient unit. On this occasion, demographic data were also collected and the instruments described below were administered.

Instruments

Family burden was assessed using the Family Burden Interview Schedule (FIBS), developed by Tessler and Gamache,[19] which has already been adapted for use in the Brazilian population (FIBS-BR).[20] All questions in the instrument refer to the month preceding its administration. This scale assesses the degree of objective and subjective burden in five dimensions of the family members' life, which consist of the following subscales: (i) daily patient care; (ii) supervision of patient behaviors; (iii) financial expenditure on the patient; (iv) impact on caregiver's life; and (v) worries about patient. Objective burden evaluates the frequency with which the family member helped the patient with routine tasks on a five-point scale (1 = never, to 5 = everyday). Subjective burden refers to discomfort associated with patient handling tasks, which is assessed on a four-point scale (1 = not at all, to 4 = extremely). Burden levels are calculated using the mean of the scores obtained in items, which range from zero (no burden) to five (elevated burden).

The Family Environment Scale (FES),[21] in its Brazilian Portuguese version,[22] was used to assess family members' perceptions of the family environment. The FES can be used in three ways: to assess the real family environment (R form), the ideal environment (I form) or the expected environment (E form). In this study, the 53-item version of the R questionnaire was used. The scale is composed of binary statements (true/false) divided into the following dimensions: interpersonal relationship, personal growth and system maintenance. The first dimension includes three subscales: cohesion (help and support between family members), expressiveness (expression of one's feelings), and conflict (openly expressed to the family). The second dimension taps into achievement-orientation (school and work activities are expressed as achievements), while the third dimension includes two subscales: organization (planning family activities), and control (presence of rules and procedures regarding family life). High conflict and control scales, and low scores on the remaining scales indicate the presence of family problems.

Patients were also administered the Panic Disorder Severity Scale (PDSS), a seven-item instrument that assesses the intensity and frequency of panic attacks, the degree of anticipatory anxiety, patient sensitivity to anxiety, the level of phobic avoidance, and social and professional impairment.[23] The scale gives a total score of 0–28 points, where scores greater than 9 are indicative of severe PD. Participants completed this instrument at the same time as their family members were administered the family burden and environment inventories.

Statistical analysis

Categorical variables were presented as absolute and relative frequencies. Continuous variables were described as mean (SD or SE) or median (percentiles). Family burden and environment were compared between groups using a χ2-test with adjusted residuals in the case of categorical variables, and independent samples T-tests for normally distributed continuous variables. The correlation between the severity of PD symptoms and family burden and environment scores was assessed using Spearman's correlation coefficients. The influence of independent variables on family burden and environment was investigated using generalized linear model (GLM) multivariate analysis. Given our sample size, variables were selected for the model based on bivariate statistical significance (P < 0.05). Analyses were carried out using spss 18.0 (spss, IBM, Chicago, IL, USA).

Results

  1. Top of page
  2. Abstract
  3. Method
  4. Results
  5. Discussion
  6. Acknowledgments
  7. References

The sample comprised a group of 67 relatives of patients with PD, and a control group of 66 relatives of patients with clinical diseases. The symptom severity of the 67 patients with PD whose family members participated in the former group was also assessed. The sociodemographic characteristics of patients' relatives are described in Table 1. Groups did not differ as to age and marital status. However, among the family members of patients with PD, there was a significant predominance of men, higher prevalence of parental ties and higher levels of education than among members of the control group. A significant predominance of caregivers who were the children of the patients in question (son or daughter) was also observed among individuals with clinical diseases.

Table 1. Comparison of sociodemographic characteristics between the relatives of patients with panic disorder and those of subjects with clinical diseases
CharacteristicsTotalClinical diseasePanic disorderP
n = 133n = 66 (49%)n = 67 (51%)
  1. a

    P < 0.05.

  2. b

    Categorical variables are presented as absolute and relative frequencies (%) and were analyzed using χ2 adjusted residuals (+ indicates that values were significantly higher than expected and – indicates they were lower).

  3. c

    Continuous variables are presented as mean (SD) and were analyzed with independent samples T-tests.

  4. d

    With partner – family caregiver was married or in stable relationship

  5. e

    Without partner – family caregiver was single, divorced or widowed.

  6. f

    Others – caregiver was a sibling, cousin, uncle or grandparent of the patient.

Sexb    
Male43 (32)12 (28)31 (72)0.001a
Female90 (68)54 (60)36 (40)
Age (years)c47.10 (13.48)49.30 (13.23)44.93 (13.47)0.061
Education (years)c10.13 (4.35)8.18 (3.67)12.04 (4.13)<0.001a
Marital statusb    
With partnerd95 (71)47 (49)48 (51)<0.999
Without partnere38 (29)19 (50)19 (50)
Caregiver kinshipb    
Spouse70 (53)30 (43)40 (57)0.002a
Parents14 (11)3 (21)11 (79)+
Children33 (25)25 (76)+8 (6)
Othersf16 (12)8 (50)8 (50)

The most common diagnoses in the control group were systemic arterial hypertension (SAH), which was reported by 50 (75%) participants, followed by heart disease (n = 41; 62%) and diabetes mellitus type 2 (DM2) (n = 24; 36%). On average, patients reported 3.1 (SD = 1.21) clinical comorbidities and high rates of polypharmacy, with patients taking a median of six (4–7.75) medications every day.

In the PD group, of the 10 patients (15%) who presented with clinical comorbidities, seven (10%) had SAD, three (4%) had been diagnosed with hypothyroidism, two (3%) with DM2 and two (3%) with asthma. Five (7%) patients had more than one clinical comorbidity in addition to PD. The most commonly reported psychiatric comorbidities (Axis I) in this group were: agoraphobia (n = 61; 91%); mood disorders (current and past depression or dysthymia) (n = 34; 51%); and other anxiety disorders (generalized anxiety disorder, social anxiety disorder or OCD) (n = 32; 48%). A total of 22 (33%) patients met criteria for more than one comorbid disorder, excluding agoraphobia. All patients received medication, with 48 (72%) taking selective serotonin reuptake inhibitors (SSRI), seven (10%) receiving tricyclic antidepressants (TCA), 36 (54%) taking benzodiazepines, and 32 (48%) taking more than one type of medication.

Between-group comparisons of family burden and environment

The present results indicated that the family members of patients with PD reported higher levels of subjective burden associated with daily patient assistance, although no between-group differences were observed in other subjective burden subscales. The control group reported higher levels of objective burden on the daily patient care, impact on caregiver's life, and general objectivity scales (Table 2).

Table 2. Comparison between the family burden (FIBS-BR) and family environment (FES) reported by the families of patients with panic disorder and clinical diseases
 Clinical diseasePanic disorderPb
n = 66 (49%)n = 67 (51%)
  1. a

    P < 0.05.

  2. b

    Continuous variables are presented as mean (SD) and were analyzed with independent samples T-tests.

  3. FES, Family Environment Scale; FIBS-BR, Family Burden Interview Schedule.

Family burden   
Objective   
Assistance to the patient in daily life2.24 (0.83)1.90 (0.81)0.017a
Supervision of problematic behaviors1.39 (0.51)1.35 (0.47)0.601
Impact on caregiver's life1.64 (0.95)1.34 (0.63)0.032a
Total objective burden1.80 (0.56)1.58 (0.55)0.024a
Subjective   
Assistance to the patient in daily life1.43 (0.69)1.71 (0.71)0.025a
Supervision of problematic behaviors2.81 (1.05)2.79 (1.00)0.938
Worries about patient3.07 (0.90)3.01 (0.96)0.686
Total subjective burden2.53 (0.67)2.59 (0.67)0.592
Family environment   
Relationship   
Cohesion7.58 (1.74)7.25 (1.83)0.291
Conflict1.62 (1.80)2.42 (2.07)0.020a
Expressiveness4.33 (1.45)4.57 (1.43)0.347
System maintenance   
Control4.32 (1.83)4.27 (1.95)0.808
Organization7.25 (1.86)6.16 (2.33)0.004a
Personal growth   
Achievement orientation6.46 (1.13)5.94 (1.44)0.023a

Analysis of the family environment instruments revealed that the family members of patients with PD reported more family conflicts than the control group, who obtained higher scores in the organization and achievement-orientation scales (Table 2). No significant differences were found in the remaining dimensions of the FES.

A GLM analysis was then performed to investigate the association between family burden, family environment and independent variables. Subscale scores on family burden and family environment instruments, which differed significantly between groups, were considered dependent variables. Patient sex, level of education and caregiver kinship were entered into the model as independent variables.

Higher levels of subjective burden (Table 3) were significantly higher when the caregivers were the children of the patients (P = 0.001). The relatives of patients with PD also obtained lower scores than those of patients with clinical diseases on the ‘assistance in daily life’ (P = 0.023) and ‘impact on caregiver's life’ (P = 0.008) scales of the FIBS, as well as lower total objective burden scores on this scale (P = 0.024).

Table 3. Multivariate analyses of family burden, controlling for sex, age and education
Family burdenObjectiveSubjective
Assistance to the patient in daily lifeImpact on caregiver's lifeTotal objective burdenAssistance to the patient in daily life
Mean (SE)PMean (SE)PMean (SE)PMean (SE)P
  1. *P < 0.05.

  2. Different letters represent statistically different means.

  3. †Generalized Linear Models.

GroupPanic disorder1.92a (0.13)*0.023*1.42a (0.12)*0.0081.64a (0.09)*0.024*1.64 (0.11)0.884
Clinical disease2.36b (0.15)*1.93b (0.15)*1.94b (0.11)*1.61 (0.13)
ParentSpouse1.89 (0.96)0.1651.35a (0.95)*0.0171.57a (0.07)*0.021*1.53a (0.08)*0.001*
Others2.09 (0.20)1.57ab (0.20)1.66b (0.14)*1.30a (0.17)*
Children2.12 (0.17)1.60ab (0.17)1.82ab (0.11)1.37a (0.16)*
Parents2.47 (0.26)2.20b (0.26)*2.10ab (0.18)2.31b (0.22)*

Caregiver kinship was also associated with scores on the ‘conflict’ dimension of the FES (Table 4), with significant differences being identified between the scores of adult children and spouse caregivers on this scale (P = 0.045), regardless of group. Scores on the ‘organization’ dimension were lower for the family members of patients with PD than for individuals in the control group (P = 0.036), with the scores of spouse caregivers differing significantly from those of other caregivers (P = 0.034).

Table 4. Multivariate analysis of family environment, controlling for sex, age and education
Family environmentRelationshipSystem maintenancePersonal growth
ConflictOrganizationAchievement orientation
Mean (SE)PMean (SE)PMean (SE)P
  1. *P < 0.05.

  2. †Generalized Linear Models.

  3. Different letters represent statistically different means.

GroupPanic disorder2.76 (0.30)0.2585.76a (0.33)*0.036*5.87 (0.19)0.160
Clinical disease2.23 (0.37)6.83b (0.41)*6.32 (0.27)
ParentSpouse1.74a (0.23)*0.045*7.03a (0.26)*0.038*6.32 (0.15)0.248
Others2.35ab (0.48)5.51b (0.53)*5.74 (0.31)
Children2.81ab (0.40)6.01ab (0.44)6.42 (0.26)
Parents3.06b (0.63)*6.63ab (0.69)5.91 (0.47)

Family burden, family environment and PD severity

The mean (SD, range) PDSS score in the patient group was 12.48 (SD = 6.98; 0–27). A significant positive correlation was found between scores on all objective burden scales and the intensity of PD symptoms (Table 5). Subjective burden presented meaningful positive correlations with worries about the patient and with total burden scores. No meaningful correlations were found between the severity of PD and family environment scores (coefficients ranged from r = –0.020 to 0.042).

Table 5. Correlation between the severity of PD (PDSS) and family burden
Family burden (FIBS-BR)bObjectiveSubjective
rPrP
  1. a

    P < 0.05.

  2. b

    Spearman's correlation coefficient.

  3. FIBS-BR, Family Burden Interview Schedule; PD, panic disorder; PDSS, Panic Disorder Severity Scale.

Assistance to the patient in daily life0.361a0.003a0.1190.367
Supervision of = problematic behaviors0.352a0.003a0.0570.718
Impact on caregiver's life0.424a<0.001a
Worries about patient0.494a<0.001a
Global scale0.409a0.001a0.385a0.001a

A GLM analysis was then used to identify the independent variables associated with the family burden levels reported by the relatives of patients with PD. All sociodemographic characteristics that differed significantly between the two groups of caregivers (two-tailed P < 0.05) were entered as independent predictors in the model (sex, level of education and caregiver kinship), as were patients' PDSS scores. Scores on FIBS-BR subscales, which were significantly correlated with PDSS scores, were entered as dependent variables, as shown in Table 3.

Higher levels of objective burden associated with ‘assistance in daily life’ (PDSS – b [95% confidence interval (CI)] = 0.04 [0.02–0.07]; P < 0.001) and ‘impact on caregiver's life’ (PDSS – b [95%CI] = 0.04 [0.02–0.06]; P < 0.001), as well as greater overall objective burden scores (PDSS – b [95%CI] = 0.03 [0.0–0.05]; P < 0.001) were found to be related to the severity of PD symptoms. In addition to being explained by more severe PD (PDSS – b [95%CI] = 0.02 [0.01–0.03]; P = 0.001), scores on the ‘supervision of patient problematic behaviors’ scale were also associated with the presence of caregivers who were the children of the patient (b [95%CI] = 0.56 [0.17–0.95]; P = 0.004).

Scores on the ‘worries about patient’ scale and overall subjective burden levels were also predicted by more severe PD (PDSS – b [CI 95%] = 0.06 [0.03–0.09]; P < 0.001 – PDSS – b [95%CI] = 0.03 [0.01–0.05]; P = 0.002, respectively).

Discussion

  1. Top of page
  2. Abstract
  3. Method
  4. Results
  5. Discussion
  6. Acknowledgments
  7. References

The present results have shown that the family members of patients with PD report higher levels of subjective burden than the relatives of patients with clinical diseases. These findings support those of recent studies that have compared the burden levels reported by the families of patients with mental disorders with those of subjects with clinical diseases,[14] and found higher levels of subjective burden in the former. However, the burden scores in our study were lower than those found in the validation study of the scale used to assess this variable,[24] which involved patients with more severe mental disorders, such as schizophrenia. The fact that the current sample was composed of family members of patients with non-psychotic mental disorders who were receiving outpatient treatment might have attenuated family burden levels.

On the other hand, objective burden levels were lower in the PD group than among control participants. According to previous studies, family re-adaptation is necessary in all cases of chronic illness, regardless of the diagnosis. The medical orientations and treatment associated with these conditions often result in changes in the family routine.[25] For example, chronic illnesses often require continuous medication use, changes in the patient's diet and other similar restrictions,[1] especially when patients require regular assistance to perform daily life activities.[26]

The between-group differences found between sociodemographic characteristics might be due to characteristics of the diseases studied. The fact that most caregivers of patients with PD were male could be related to the fact that women are two to three times more likely to be affected by this disorder, panic attacks or agoraphobia than men,[11] and that the caretaker role is often assigned to their spouse. On the other hand, the predominance of female caregivers among patients with clinical disease was in agreement with other studies.[1, 27] According to some authors, daughters or wives tend to take on the primary caregiver role in these cases due to the social and cultural expectations of women.

A multivariate analysis showed that the highest levels of subjective burden were reported by caregivers who were also the patient's children, regardless of the group to which they belonged. A similar result was found in a recent study comparing burden levels between the family caregivers (parents, spouses and children) of patients with schizophrenia and mood disorders. This study evidenced that burden levels were influenced by caregiver kinship in addition to the kind of disease.[5]

The results of family environment scores revealed that PD was associated with worse family ‘organization.’ This finding corroborates those of a separate study with 97 children with chronic diseases and their respective family members, which found that lower anxiety levels were associated with better family functioning.[28] However, other studies have also found that the presence of clinical diseases in a family could result in greater cohesion between family members, which made activity planning easier.[29] Thus, it is possible that ‘organization’ deficits may be consistently and specifically associated with the families of patients with anxiety disorders.

The multivariate analysis performed on patients in the PD group revealed that the severity of the condition was an independent predictor of family burden. It is possible that patients with more intense panic attacks or who have a greater fear of new attacks have more entrenched avoidance behaviors,[12] and consequently, grow more dependent on their families even for routine activities, such as, for example, riding the bus, going to the bank, to the supermarket, or to the shopping mall.[10] Moreover, the financial difficulties often reported by patients with mental disorders also lead to increased family dependency.[30]

Studies of the impact of family-focused interventions in different disorders have pointed out that psychoeducational interventions were effective in reducing family burden and in improving the symptoms of patients with clinical conditions, such as DM2, cardiovascular diseases and cancer,[24] and with mental disorders, such as depression[31] and schizophrenia.[32]

Therefore, the assessment of family burden can be a useful tool in designing family-focused therapeutic strategies, which contribute both to the course and prognosis of the disease, as well as to patient quality of life. To our knowledge, this is the first study to assess the impact of PD on patient families, and our results underscore the importance of including the family in the patient's treatment.

Some limitations of this study must be considered, such as the heterogeneity of our sample and the fact that family burden and family environment were only assessed at one point in time. The scarcity of similar studies in the literature also limited our discussion of the influence of patient sociodemographic characteristics on our results. The presence of mental disorders and the severity of the clinical conditions presented by patients in the control were also not assessed, although both of these factors could influence burden levels. The lack of studies about family burden, family environment and PD in the literature also limits our ability to compare our results to those of other studies. Lastly, we did not assess the influence of clinical comorbidities in the control group on family burden and family environment.

Acknowledgments

  1. Top of page
  2. Abstract
  3. Method
  4. Results
  5. Discussion
  6. Acknowledgments
  7. References

This study was partially funded by the Fundação de Incentivo a Pesquisa e Eventos do Hospital de Clínicas de Porto Alegre (FIPE-HCPA), masters grants awarded by CAPES (T.D., A.C.W.), and undergraduate grants (A.F.) awarded by the Fundação de Apoio a Pesquisas do Rio Grande do Sul (FAPERGS). None of the authors has anything to disclose.

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  6. Acknowledgments
  7. References
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