|Year : 2019 | Volume
| Issue : 2 | Page : 125-130
Caregiving experience and marital adjustment in spouses of patients with schizophrenia
Shipra Singh1, Deoraj Sinha2, Nitin B Raut3
1 Department of Psychiatry, Dr. R.M.L. Hospital and PGIMER, Delhi, India
2 Department of Psychiatry, Dr. R.N. Cooper Hospital and HBT Medical College, Mumbai, Maharashtra, India
3 Department of Psychiatry, Lady Hardinge Medical College, Delhi, India
|Date of Submission||21-Jun-2018|
|Date of Decision||22-Jul-2018|
|Date of Acceptance||08-Oct-2018|
|Date of Web Publication||26-Jun-2019|
Dr. Deoraj Sinha
Department of Psychiatry, Dr. R.N. Cooper Hospital and HBT Medical College, Mumbai, Maharashtra
Source of Support: None, Conflict of Interest: None
Background: Schizophrenia has far-reaching consequences for both – patients, and spouses as caregivers. Perception of caregiving and marital adjustment appears to depend on various factors and also on each other. Objective: To study caregiving experiences and marital adjustment in spouses of patients having schizophrenia. Materials and Methods: A cross-sectional study was done with spouses of 100 consecutive patients having schizophrenia in a tertiary care teaching institute. Scales used included Experience of caregiving inventory (ECI), Dyadic adjustment scale (DAS), Multidimensional scale of perceived social support (MSPSS) and Positive and negative syndrome scale (PANSS). Statistical analysis was done using SPSS-20 software using correlation, regression analysis, t-test and descriptive statistics as applicable. Results: Mean average of total positive score of ECI was higher (2.56) than a negative score; and for DAS, it was highest for consensus (3.07) and minimum for affect expression scale (1.66). Better dyadic adjustment (P-value < 0.001), more age of spouse currently and at the time of marriage, and high social support were positively correlated with positive caregiving experiences (P-value = 0.010, r = 0.257; P-value = 0.04, r = 0.202, P < 0.001, r = 0.610 respectively). Negative caregiving experiences were related to joint family system, higher PANSS scores and higher number of hospitalizations. Conclusion: Factors affecting caregiving experience and marital relationship in schizophrenia need to be identified, and targeting them through psychiatrists or other informal sources, might improve the overall quality of life of spouse as a caregiver and also the patients.
Keywords: Caregiving, marital adjustment, schizophrenia, social support spouse
|How to cite this article:|
Singh S, Sinha D, Raut NB. Caregiving experience and marital adjustment in spouses of patients with schizophrenia. Indian J Soc Psychiatry 2019;35:125-30
|How to cite this URL:|
Singh S, Sinha D, Raut NB. Caregiving experience and marital adjustment in spouses of patients with schizophrenia. Indian J Soc Psychiatry [serial online] 2019 [cited 2020 Feb 18];35:125-30. Available from: http://www.indjsp.org/text.asp?2019/35/2/125/261483
| Introduction|| |
Schizophrenia is a clinical syndrome of variable and extremely disruptive psychopathology involving cognition, emotion, perception, and behavior. It is cyclic in nature and recurrence of symptoms is often unpredictable. Most of the patients spend years in a residual phase –withdrawn and isolated, suffer from peculiar unsatisfactory social skills, living skills, display residual features of illness and their work proficiency, and marital relationships are affected to a great extent. It is a common disease striking approximately 1 out of 100 people at some point in their lifetime and in India, prevalence is about 3/1000 individuals.,
Schizophrenia has far-reaching consequences not only for the quality of life of patients but also for their caregivers. Due to new treatment modalities and deinstitutionalization movement, most of these patients are able to return to their families, which have, therefore, become an important factor contributing to patient's mental condition and course of recovery. However, during this course, caregivers experience considerable financial, emotional, and practical burdens. However, it has been suggested that the term “burden” is negative and refutes any positive or rewarding aspect of caring for a family member with mental illness; and hence, a more appropriate term that encompasses the whole experience of caring for a patient with schizophrenia, that is, “caregiving,” has been proposed.
Earlier research has found differences in perceived burden and caregiving between spouse and other caregivers., Caregiver's perception and reaction were found to be associated with symptoms, duration of illness, state of functioning, etc., in previous studies and varied observations were found.,,
Around 20%–30% of patients with schizophrenia are married or are in relationships. Mental disorders and problems in marriage are closely linked, though there is a controversy about the sequence. The levels of burden experienced by spouses vary with several factors and lead to disturbed interpersonal relationships. However, it is noteworthy that patients constantly living with spouse have a positive outcome and social prognosis. Social support is one recognizable factor that helps mentally ill person and the caregiver to function adequately, who often tend to have limited social interaction.
There is a dearth of data in Indian research with spouses, in particular, of patients suffering from schizophrenia. Hence, this study aims at assessing caregiving experiences and marital adjustment in the spouses of patients with schizophrenia and relationship with different contributory factors and social support.
| Materials and Methods|| |
It was a cross-sectional study conducted in the psychiatry outpatient and inpatient departments of a tertiary care teaching municipal hospital in Mumbai after obtaining the Institutional Ethics Committee approval. A total of 100 consecutive participants were included who were spouses, of patients diagnosed with schizophrenia as per the Diagnostic and Statistical Manual of Mental Disorders-5 with a minimum duration of 5 years, having age between 20 and 60 years, and were primary caregivers of the patient. Those having any other mental illness or chronic physical illness (based on the clinical interview and assessment) were excluded from the study, and written informed consent was obtained from participants before commencing the study. The measures used were the semi-structured pro forma, which consisted of questions related to sociodemographic and illness variables, and the following:
Experience of caregiving inventory
Developed by Szmukler, experience of caregiving inventory (ECI) is a self-report measure of the caregiving experience of a carer of a person with a serious mental illness. It is a self-report 5-point Likert scale, ranging from 0 to 4, where 0 refers to “never” and 4 to “nearly always.” It is divided into 10 subscales and 8 negative (difficult behaviors, negative symptoms, stigma, problems with services, effects on the family, need to provide backup, dependency, and loss) and 2 positive subscales (rewarding personal experiences, good aspects of the relationship) derived from 66 items in all (52 negative and 14 positive). For the purpose of this study, the overall positive and negative scores were used for the primary analysis. The ECI has good internal consistency with Cronbach's alpha ranging from 0.91 to 0.74.,,
Dyadic Adjustment Scale
Created by Spanier in 1976, it is a 32 item Likert-type scale consisting of separate dimensions of marital adjustment: (a) consensus on matters of importance to marital functioning, (b) dyadic satisfaction, (c) dyadic cohesion, and (d) affection expression. Internal consistency of Dyadic Adjustment Scale (DAS) score is high. Coefficient alpha for total DAS score r is 0.93. Convergent validity was established with Locke–Wallis Marital Adjustment Scale (r is 0.87) and divergent validity by evidence of an inverse relationship with the Marital Dissatisfaction Scale (r is −0.79). Conventionally, couples who have a total score of 102 or more were considered nondistressed, but as given in recent revisions, a cutoff of 97 was used in our study.,
Multidimensional Scale of Perceived Social Support
Multidimensional Scale of Perceived Social Support was created by Zimet et al. to assess perceived social support. It is a 12-item questionnaire on a 7-point Likert-type scale, with one being “very strongly disagree” and seven being “very strongly agree,” for a possible total score of 84. Factor analysis has found three factors within perception of social support: friends, family, and significant other. Higher scores indicate a higher level of perceived social support. Alpha scores for the three subscales are 0.93 for friends, 0.92 for family, 0.93 for significant others, and 0.93 for total score.,
Positive and Negative Syndrome Scale
The Positive and Negative Syndrome Scale (PANSS) by Kay et al. is a 30-item symptom rating scale that was designed to measure core positive and negative symptoms of schizophrenia. Symptoms are rated along a seven-point continuum of severity based on a semi-structured interview with the patient as well as observations of the patient's behavior, during the past 7 days by informants. Each of the items making up the Positive and Negative Scales correlated very strongly with the scale total (P < 0.001) and the mean item-total correlations of 0.62 and 0.70, respectively.,
Data was processed in MS- Excel. Results obtained for quantitative data were presented using mean, range, and standard deviation (SD). Data were normally distributed. Chi-square test was done for categorical variables, and t-test for continuous variables.
| Results|| |
The study sample consisted of 72 male spouses and 28 female. 61% had nuclear family type. Majority of them were literate (98%); out of which 76% were educated till Higher Secondary or above. 20% of the participant were homemaker (all of whom were females) and rest were employed.
Mean age of spouses was 47 years (SD = 9.25 years) and mean age at the time of their marriage was 25.97 years (SD = 5.8 years). Among the illness-related factors of the patients, average duration of illness was 14 years (SD = 8.09 years) and 1.77 was average number of hospital admissions. Patient's current status was obtained using PANSS, on which mean on subscales of positive symptoms, negative symptoms, and general psychopathology was 17.02, 15.35, and 32.26 (SD = 7.07, 4.98, and 10.07), respectively, with average total score of 64.63 (SD = 19.2). In 89% of the cases, patients had developed the illness (schizophrenia) after marriage. About 57% had no active symptoms at the time of interview and 59% of the patients were found adherent on treatment. Out of the 100 spouses, patients of 37% spouses had experienced three relapses in the patient till date; 13% had none and 12% had witnessed >5 relapses.
On ECI, the mean of total negative score was 79.58 (range 9–165) and of total positive score was 35.95 (range 16–56). However, since these scores were not statistically comparable due to different number of items, mean average of these was obtained (dividing the mean total score of a particular scale by the number of items in that scale or subscale).
Here, mean average of total positive score (2.56) is higher than negative score (1.53), which suggests that positive experiences of caregiving are more than negative. Score was found high for both positive subscales (2.55 for “positive personal experiences” and 2.58 for “good aspects of relationship” subscales). However, among negative subscales, “dependency” has the highest score (2.126), followed by “stigma” (1.72) and the lowest is of “loss” subscale (1.29).
DAS has a score ranging from minimum of 31 to maximum of 146, with cutoff of 97, that is, score <97 suggests poor marital adjustment, whereas score of 97 or above suggests good marital adjustment. With this assumption, it was found that in the study group, 56% spouses had good marital adjustment, whereas 44% had poor.
Mean average score of consensus on matters of importance to marital functioning was highest (3.307), followed by dyadic cohesion and dyadic satisfaction, and affect expression being the lowest (1.66). Approximately 76% of the spouses reported to have good (>42 on the scale, that is, >50% of the maximum score of the scale) and 24% poor (<50% of the total possible score).
On further analysis, the relation between caregiving experience and various demographic and illness variables was established. The current age of spouse and age at the time of marriage was positively correlated with positive caregiving [Table 1]. The latter also negatively correlated with negative caregiving (P = 0.029, r = −0.28). No significant difference was found in caregiving based on gender. However, negative caregiving experiences were higher in the joint family system than in the nuclear family.
Studying the caregiving and illness-related factors, we found that duration and onset (before or after the marriage) of illness had no association with caregiving (P > 0.05). PANSS score significantly correlated negatively with the positive and positively with the negative caregiving [Table 2].
|Table 2: The correlation of subscales of positive and negative syndrome scale with positive and negative caregiving experiences|
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Negative caregiving positively correlated with number of admissions (P = 0.001, r = 0.325). Mean of positive subscale was significantly higher (P = 0.0002) and negative was lower (P = 0.0007) in currently symptom-free individuals than those having active symptoms. Higher negative caregiving was seen in patients having poor compliance compared to those having good compliance (P = 0.0009). Regression analysis between the negative caregiving and compliance shows that negative caregiving can account for poor compliance (P < 0.001, r2 = 51.1%).
Considering the caregiving experience and marital adjustment, all the subscales of DAS negatively correlated with the individual and total of the negative and positively correlated with the positive caregiving [Table 3].
|Table 3: The correlation subscales of dyadic adjustment with caregiving experience|
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| Discussion|| |
On ECI, mean of average scores suggests that positive experiences of caregiving are more than negative and is in accordance with previous studies. It was seen that score was high for both positive subscales. However, among negative subscales, “dependency” had the highest score, followed by “stigma” and lowest score for “loss” subscale. This indicates that caregivers were mostly concerned about their patient depending on them for various reasons – financially, as they could not sustain a permanent job, limited socializing abilities, and interacting mostly with their caregivers. This finding was similar to that of a study by Kwan. The second highest score was of scale “stigma,” which was probably due to the lack of awareness about mental illness and myths related to it, that are still prevalent in India. However, it is quite contradictory to the findings of a study by Kwan, where score of stigma was found to be least, probably because there, all the caregivers were enrolled in a psychoeducational program.
With the cutoff score of 97, it was found that 56% had good marital adjustment, whereas 44% had poor. Although we could not find any study on marital adjustment per se, a 10-year follow-up study in India found the marital outcome to be good in 59.21% and poor in 40.78% of the sample, which seems similar to that of ours.
On DAS, mean average score of “consensus on matters of importance to marital functioning” subscale was highest (3.307) and affect expression was the lowest (1.66), which suggests that most of the patients and their spouses agreed on routine life issues such as handling family finances, ways of dealing with parents or in-laws, making major decisions, or household tasks. However, the affect expression of patients was less, probably due to effect of illness on patients' social cognition, negative symptoms, and due to effect of antipsychotics reducing the emotional expressivity, which can thereby reduce the same in spouse. In addition, the spouses in most cases were taking on some extra responsibilities, due to which they were mostly busy, tired, and fatigued.
Increasing age of spouse in our study was related to positive caregiving experiences. This might be due to the better cognitive and emotional maturity with age and more sound coping skills of the individual. Increasing age was also related to lesser negative caregiving, probably due to better awareness of the disease and lesser element of surprises in the patient's behavior. However, earlier studies have found varying results.,,
No significant difference was found in positive or negative caregiving based on the gender of spouse. Previous research has found different results. Some believe that females have always been better caregiver, as this is something which comes naturally to them, whereas others say that females experience more burden of caregiving than men.,
Negative caregiving experiences were higher in joint family system than in nuclear family, which can be attributed to the fact that in a joint family setting as in India, spouse of the patient would have a number of other responsibilities besides towards the patient, which might lead him/her being overburdened and exhausted, and having more of negative appraisal of caregiving. Furthermore, more the number of people, more is the chance of patient and the spouse facing expressed emotions, which can be minimized in a small family setup. According to an Indian study, joint family system contributes to spouse-related burden, whereas nuclear family to the areas of external support.
We found that higher the perceived support, more was the positive appraisal and lesser negative appraisal of caregiving. Perceived social support affects the management in schizophrenia, as it involves the active participation of family members and significant others, which was seen by another study as well.
In our study, duration of illness had no association with either positive or negative aspect of caregiving. Some studies found that with increasing duration of the illness, certain negative experiences gradually decrease., However, another study indicated no relation of burden with illness duration.
We found that more the symptoms, appraisal of positive caregiving is less and negative is more. Patient and caregiver profiles of our study suggest that patients were ill for a minimum duration of 5 years and that caregivers were in such a role for prolonged periods. It indicates that persistence of symptoms, despite best efforts of caregivers, leads to a feeling of failure and hence possibly reduces the motivation to care. Findings of the present study are similar to those reported by Kate et al. However, with positive symptoms, varied results are seen.,,
Relapses and multiple hospitalizations are associated with more negative caregiving experiences. Hospitalization implies worsening of symptoms, leading to a disruption in the routine life of spouse, along with extra responsibilities at hospital, and financial burden, causing negative appraisal of caring. These results were in keeping with previous studies, where financial burden was associated negatively with the caregiver satisfaction and positive aspects of caregiving.
Caregiving was not found related to onset of the illness, that is, whether illness started before or after the marriage (P > 0.05), which differs from an Indian study, which found better functioning in the cases where the illness developed after the marriage. This might be due to the social structure of Indian marriage, which is considered a relationship for lifetime in spite of whatever adversities occur. And therefore, the spouse tends to care for an ill husband or wife, as their responsibility throughout.
Poor treatment compliance was seen where a spouse had more negative appraisal of caregiving. In such cases, caregiving was mostly perceived as a burden and also might lead to some amount of expressed emotions, which is known to be associated with poor compliance and repeated worsening of the patient.
In our study, caregiving experience and marital adjustment were found associated at all subscales. It seems obvious that if the spouse has less negative caregiving experiences, which means that he/she is not persistently preoccupied with patient's illness and is perceived more positive experiences; there will be more satisfaction with marital life, better consensus over issues, and probably an overall good marital outcome. Similarly, if there is a harmonious marital relation, spouse would automatically be picking up more positive experiences and would have, on the whole, enhanced caregiving.
| Conclusion|| |
Caregiving, as traditionally thought, does not merely constitute burden but also has certain positive aspects; and spouse, as a caregiver, has certain different challenges and needs in the caregiving, which we had tried to focus upon. We found that social support and maturity gained with age were important correlates of positive caregiving and dyadic adjustment, which might lead to better patient management and outcome. On the other hand, excessive burden on spouse in the form of excessive symptoms, relapses, and poor compliance is related to negative appraisal.
As mental health professional, positive aspects should be recognized and validated, helping caregivers to have positive outlook that can benefit the patient as well. Team efforts to develop family support, involving informal sources such as multiple family group therapy could benefit. Specific group services for spouses, concerning themes, such as possible changes in relationship between spouses and patients, problems arising when organizing family, questions of parenting, possible developmental risks, as well as possible impairments to sexuality, might be of great help, as the group would offer opportunities to soothe feelings of loneliness, establish contacts with other spouses, and initiate mutual help.
This study has the limitation of being cross sectional and not having community-based sample; a prospective study with larger community sample with additional qualitative approach would be able to address specific, in-depth details of experiential aspects of caregivers. In addition, a structured questionnaire for excluding any psychiatric illnesses would have been a more accurate measure.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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