|Year : 2018 | Volume
| Issue : 2 | Page : 115-122
A comparative study of caregiver burden and self-efficacy in chronic psychiatric illness and chronic medical illness: A pilot study
Supriya Mathur1, Suhas Chandran1, M Kishor2, SN Prakrithi3, T S. Sathyanarayana Rao4
1 Junior Resident, Department of Psychiatry, JSS Medical College and Hospital, JSS Academy of Higher Education and Research, Mysore, Karnataka, India
2 Associate professor, Department of Psychiatry, JSS Medical College and Hospital, JSS Academy of Higher Education and Research, Mysore, Karnataka, India
3 Intern Resident, Department of Psychiatry, JSS Medical College and Hospital, JSS Academy of Higher Education and Research, Mysore, Karnataka, India
4 Professor, Department of Psychiatry, JSS Medical College and Hospital, JSS Academy of Higher Education and Research, Mysore, Karnataka, India
|Date of Web Publication||31-Dec-2018|
Dr. M Kishor
Department of Psychiatry, Jss Medical College and Hospital, Jss University, Mysore - 570 004, Karnataka
Source of Support: None, Conflict of Interest: None
Background: A caregiver is an individual who provides assistance and assumes the responsibility for the physical and emotional needs of another individual who is incapable of self-care. Caregiver burden is a universal phenomenon and more than half of the caregivers experience burden in their role as caregivers. There is a paucity of studies to understand the burden and coping strategies of caregivers in chronic psychiatric illness and chronic medical illnesses, especially in the Indian scenario.
Aims and Objectives: (i) To compare the caregiver burden in chronic psychiatric illness and chronic medical illness (ii) To compare the caregiver efficacy in chronic psychiatric illness and chronic medical illness.
Materials and Methods: The study sample included caregivers of inpatients admitted in a tertiary care hospital in South India. A total of 120 caregivers were included in the study with 60 caregivers from psychiatric ward and medicine ward, respectively. The caregivers were then assessed using the Caregiver Burden Scale and the Revised Caregiver Self-efficacy Scale
Results and Conclusion: We found that majority of the caregivers were first-degree relatives and women constituted a major part of the caregiver group. Caregiver burden was significantly higher in psychiatric illnesses compared to medical illnesses. Caregiver efficacy was similar in both study groups. Interventions to reduce caregiver burden and to improve caregiver efficacy should be implemented to ensure optimal management of both patient and caregiver.
Keywords: Caregiver burden, caregiver self-efficacy, medical illness, psychiatric illness
|How to cite this article:|
Mathur S, Chandran S, Kishor M, Prakrithi S N, Rao T S. A comparative study of caregiver burden and self-efficacy in chronic psychiatric illness and chronic medical illness: A pilot study. Arch Ment Health 2018;19:115-22
|How to cite this URL:|
Mathur S, Chandran S, Kishor M, Prakrithi S N, Rao T S. A comparative study of caregiver burden and self-efficacy in chronic psychiatric illness and chronic medical illness: A pilot study. Arch Ment Health [serial online] 2018 [cited 2020 Feb 26];19:115-22. Available from: http://www.amhonline.org/text.asp?2018/19/2/115/248877
| Introduction|| |
A caregiver is an individual who provides assistance and assumes responsibility of the physical and emotional needs of another individual who is incapable of self-care. Caregivers can be formal caregivers, who are associated with formal service system or informal caregivers who typically include the close family members such as parents, spouse, siblings, children, and peers.
Most caregivers experience stress in their role as caregivers, due to which it has been considered a universal phenomenon. This stress of caregiving is called caregiver burden, the concept of which was first introduced by Treudly. There is no separate classification for caregiver burden in ICD-10. The best definition of the term with respect to informal caregivers is given by Zarit et al., “The extent to which caregivers perceive that caregiving has had an adverse effect on their emotional, social, financial, physical, and spiritual functioning.” A number of factors, involving both the patient and the caregiver, determine caregiver burden: the relationship between them, the duration, nature, and severity of illness as well as time spent by caregiver with the patient. Family members provide the majority of the in-home long-term care and are the primary caregivers of persons with chronic illnesses in most of the Eastern World and in India. The family caregiver takes up multiple responsibilities, which include personal care of the patient, emotional support, supervising and administrating drugs, taking the patient for hospital visits and financial care. Around 68% of the family caregivers report high level of burden and around 65% of them report depressive symptoms. Caregiving in mental illness carries significantly higher distress. In addition to the general aspects, these caregivers need to monitor the patient closely for early signs of illness and relapses, as most often, unlike in nonpsychiatric illnesses, patients themselves are quite unaware of the warning signs. Frequently, these caregivers bear with poor functioning, disorganized behavior, become the targets of the abusive, violent behavior of the patient. The stigma of mental illness leads to social isolation of the entire family from the society. Due to the need of investing long hours of caregiving, they cut back on leisure activities, are irregular to work or even quit their job to take care of the patient. These caregivers report anxiety, stress, and depression, and in the long run, face exhaustion, and burnout. Multiple factors play a role in caregiver burnout. The gradual breakdown of joint families due to urbanization into smaller nuclear families with both spouses working has introduced additional load on these family caregivers. There is a significantly higher need for assistance, as coping singly with balancing professional commitments and caregiving duty takes a severe toll on them physically and emotionally.
Considering the significant negative impact of this phenomenon, many attempts have been made to identify traits in certain individuals who make them better equipped to handle caregiving burden, and a few of them have been identified as positive coping mechanisms, self-care, internal motivators and intrinsic behaviors: mastery, resilience, and self-efficacy. Among the intrinsic behaviors, self-efficacy has been shown to be the most important, significantly impacting the individual's behavior and motivation. Caregiver self-efficacy has been defined as the individuals' self-confidence in their own ability to perform tasks related to caregiving. It has been found to change the adverse outcomes of caregiver burden such as stress and strain. Higher self-efficacy has also been associated with lower levels of depression, lower blood pressure, and lower risk of cardiac disease and finally, a lesser perceived burden. The self-efficacy theory also suggests that these individuals have increased levels of success in completing caregiving tasks and reported a better sense of well-being than ones with lower levels of self-efficacy.
In the Indian scenario, the burden and coping strategies of caregivers have not been adequately studied, and there is a paucity of research directed toward comparison of caregivers of medical and psychiatric illnesses. The objective of this study was to compare the burden and efficacy among caregivers of chronic medical illness and those with chronic psychiatric illness. We also assessed the sociodemographic pattern in both groups along with the relationship between caregiver and patient and the duration of caregiving.
| Materials and Methods|| |
We conducted a cross-sectional study in a tertiary care hospital in South India, after due approval from the ethics committee, with the study sample consisting of 120 caregivers of in-patients admitted in the medical and psychiatric wards, with 60 caregivers, respectively, from each ward. For each study participant, the age and sex of caregiver and duration of caregiving were taken into account and both the groups were matched for these conditions. In addition, the diagnoses of patients were also noted. The caregivers were then assessed using The Caregiver Burden Scale and The Revised Caregiver Self-efficacy Scale. These scales were self-administered by those who were well versed in English and for others; it was translated verbally into the vernacular language in which both the patient and interviewer were fluent.
The caregiver burden scale developed by Zarit et al. consists of 22 questions. There is a 5-item response to each question, and each response is given a score from 0 to 4. All the response scores are then added for the final score, based on which the burden is graded as little to no burden (<20), mild (21–40), moderate (41–60), and severe burden (>60).
The revised caregiver efficacy scale consists of 15 questions. Each question has a score of 0–100 where a 0% confidence means that they cannot do the concerned caregiving task at all and a 100% confidence means they are certain that they can do it. The 15 items are divided into subsets of five, with each subset representing three self-efficacy domains: efficacy for obtaining respite, efficacy for responding to patient's disruptive behavior, and efficacy for controlling upsetting thoughts about caregiving. It should be further noted that disruptive behavior does not equate to psychiatric illness.
Inclusion and exclusion criteria
Caregivers above the age of 18 years who were staying with the patient were considered for the study. We included only those caregivers who were taking care of patients for established psychiatric or medical illness for at least 1 year. Caregivers <18 years of age, caregivers of bed-ridden patients, patients on end of life support system, patients with dementia, and those of physically handicapped patients were excluded from our study. Informed consent was obtained from each study participant before entry into the study.
The obtained data were entered and tabulated using Microsoft Excel and analyzed with descriptive statistics, using an independent t-test, using SPSS software version 21.0 (IBM, Armonk, New York, USA).
| Results|| |
The sociodemographic analysis of our study sample revealed that, among the caregivers of patients with medical illnesses, the majority of caregivers were in the age group of 41–60 years (55.7%) and only 4.9% were above the age of 60 years. Women made up 86.9% of the group, and the majority of caregivers (85.6%) consisted of first-degree relatives. Index relatives made up 98.3% of the study sample. In addition, most (70%) were from the low socioeconomic status, followed by middle (26.6%) and high (3.3%). A similar distribution was seen in the caregivers of psychiatric illnesses as well, with most (48.3%) in the age group of 41–60 years and 61.7% of them being females. Nearly 88.3% of the caregivers were first degree relatives, and index relatives made up 98.3% of the study sample. The majority (70%) of them belonged to low socioeconomic status, followed by middle (26.6%) and high (3.3%) [Table 1].
In the psychiatric illness group, the mean duration of caregiving was around 7 years (around 71.07 months) as compared to medical illness group which was close to 10 years (128 months), and the difference was statistically significant [Table 2].
|Table 2: Duration of care given by caregivers in medical and psychiatric illnesses|
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[Table 3] shows the various medical and psychiatric diagnoses of the patients of the caregivers included in our study sample. The medical diagnoses included hypertension, trauma-related injury, cardiovascular diseases, pulmonary diseases, diabetes mellitus, renal, neurological, liver disorders, arthritis, and febrile/inflammatory disorders. The psychiatric diagnoses included depression, bipolar, schizophrenia, obsessive-compulsive disorder, and substance use disorders.
|Table 3: Distribution of medical and psychiatric diagnoses in patients in the study population|
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The study did not show statistically significant differences in the way caregivers handled different situations that called for self-efficacy, thereby suggesting that there were no significant variations in the way different (medical and psychiatric) caregivers perceived themselves to be competent in the different aspects of caregiving [Table 4].
We also compared the self-efficacy of caregivers of different domains, which included obtaining a respite, responding to disruptive patient behavior and for controlling upsetting thoughts about caregiving. Although not statistically significant, the self-efficacy of caregivers of medical illness was found to be better than the caregivers of psychiatric illness in all 3 domains [Table 5].
In our study, most of the caregivers of medical illnesses (around 52.5%) reported mild-to-moderate burden. However, in contrast, more number of caregivers of psychiatric illness reported moderate-to-severe grade of caregiver burden. Although it was not statistically significant, it does point out that these caregivers of psychiatric diseases experienced higher levels of distress [Table 6].
We compared the different situations where the burden was felt and found that caregiver burden was similar in most instances in both medical and psychiatric illnesses. However, significantly higher number of psychiatric caregivers reported that they did not have enough time for themselves due to time spent in caregiving, that they felt strained around the patient and that they lost control of their life after caregiving. The overall caregiver burden was also found to be higher in psychiatric caregivers, and the difference was statistically significant [Table 7].
| Discussion|| |
The study intended to compare the caregiver burden and efficacy among caregivers of patients with medical and psychiatric illnesses. The various aspects of caregiver burden are summarized in the definition given by Buhse, “A multidimensional response to physical, psychological, emotional, social, and financial stressors associated with caregiver experience.”
We found that caregivers in both the groups were mostly females which were consistent with the findings of previous studies., It has been found that women report significantly higher levels of caregiver burden, physical, and emotional stress compared to their male counterparts. We found that female caregivers predominated in caregiving for psychiatric illnesses also, which was consistent with other studies. Awad and Voruganti noted that the bulk of caregivers of patients with schizophrenia were formed by women, especially sisters and wives. The driving force for more number of women being involved in caregiving may be due to the family obligation, responsibility, and emotional attachments they feel toward their wards.
Spouses seem to experience major caregiver burden. According to the caregiver identity theory, the spousal caregiver has both spousal and caregiver roles. Because of the inconsistencies in the relationship caused by the disease, these caregivers experience burden associated with changing spousal role and the caregiver role simultaneously. Spouses often live with the patients, thereby providing longer care hours than others. One study showed that spousal caregivers had lower relationship quality scores and higher depressive symptom scores than other caregivers. Spouses may be the sole caregivers and may not receive adequate family support, in addition to which there is the cultural expectation from spouses to be more involved. Children vary in the level of commitment compared to spouses, and may perceive caregiving as an obligation, which can result in negative attitude toward caregiving, thereby decreasing motivation and increasing perceived burden.
The study sample not only showed a higher duration of caregiving for medical illnesses than psychiatric illnesses but also showed higher caregiver burden for psychiatric illnesses, possibly due to generally negative attitudes and societal stigma associated with mental illnesses, which could have caused the caregivers to perceive a much higher burden in these situations. Sugihara et al. found that increased duration of caregiving was directly related to higher levels of caregiver burden. Longer durations of caregiving can have a significant negative effect on caregiver burden, conceivably due to disease progression and worsening. The increased time allocated to caregiving can lead to neglect of other aspects of the caregivers' life, like work, parenting, and social life. The more negative outcomes may also be due to the cumulative impact of stress.
The study showed that more number of caregivers of psychiatric illness reported moderate-to-severe grade of caregiver burden than their medical counterparts. Although not statistically significant, it suggested that caregivers of psychiatric diseases experienced higher levels of distress. A similar study conducted by Ampalam et al. in Andhra Pradesh revealed identical results. They also found that duration increased caregiver burden, as did increasing age of the caregiver. In contrast to ours, this study used different caregiver burden scales and emphasized on the contrast between subjective and objective caregiver burden, whereas our study focused on the caregiver self-efficacy in various situations. Furthermore, we included only primary caregivers into our study.
More than 90% of the patients with chronic mental illnesses in India live with their families. Causes for high caregiver burden range from difficult behavior exhibited by patients, irritability, suspiciousness to being inappropriate in social situations and negative symptoms. In addition, there is the societal stigma which the caregivers have to contend with, especially in the Indian setting, where psychiatric symptoms are sometimes still given Religious explanations. This can lead to shunning by the rest of their social circle. Hatfield et at., reported that negative symptoms such as a motivation, poor eating, and sleeping were more disturbing than positive symptoms, and those families that reported more serious symptoms had higher levels of family burden. One study compared the quality of life (QOL) of caregivers of patients with chronic medical and chronic psychiatric illnesses and found that QOL of caregivers of patients with psychiatric illnesses was poorer than those of medical illnesses.
Our study found that there was no significant change in the caregiver self-efficacy when we compared between medical and psychiatric illnesses, either in different tasks or in the overall three domains, i.e., self-efficacy in obtaining respite, controlling upsetting thoughts, and responding to disruptive patient behavior. Although not statistically significant, the means of domains were higher in the medical illness group, thus indicating the need to improve self-efficacy of the caregivers of psychiatric illness. Other studies have shown that poorer caregiver efficacy led to poorer perceived health, increased depressive symptoms. Caregivers who scored better in controlling upsetting thoughts reported better health and experienced less depressive symptoms. Cheng et al. noted that caregivers with higher self-efficacy in controlling upsetting thoughts were able to handle behavioral problems with more positive gain and less burden; self-efficacy in obtaining respite decreases burden in depression; self-efficacy in responding to disruptive behaviors had positive gains, which include a sense of purpose, feeling of becoming a stronger person. Caregiver self-efficacy can influence QOL of both patient and the caregivers. In addition, it predicts the caregiving behavior. Caregivers with low self-efficacy dwell on negative outcomes, personal deficiency, and the difficulty in performing tasks.
The outcome of the health of caregivers depends on primary stressor, which includes duration and type of care provided, the physical and mental condition of care recipients, which lead to secondary stressors such as a financial burden and family conflicts. Chronic stress leads to physical and psychological adverse effects. There are certain positive outcomes also in caregiving, especially in the initial stages of the disease, where the caregiver feels that it gives meaning to their lives and helps them learn new things.
We did not account for confounding factors such as educational status and income of the caregivers. Average daily caregiving time of the caregiver population which can lead to differences in the self-efficacy was also not included in our study. Presence of any illness in the caregiver population was not included in the study which can again lead to differences in self-efficacy. We did not include caregivers of dementia patients in our study because caregiver burden is usually extremely high in these cases. Finally, our study was limited to one tertiary care center hence variations in culture-bound caregiver practices could not be assessed and the findings cannot be generalized to other populations.
Future directions and strategies to reduce caregiver burden
Caregiver burden can have adverse effects on both the caregiver and the patient and adequately addressing the issue can ensure that there is an improvement in the well-being of the family as a whole. Improving self-efficacy in addition to reducing caregiver burden will enable further improvement in results.
Pinquart and Sörensen noted that physicians should actively look for decompensation in the caregiver during visits for the patient. In addition, they also note that evaluating the caregiver separately will help to uncover information which otherwise would not be divulged by the caregiver. Another study noted that family intervention had a significant positive impact on caregiver burden and psychological distress and improved interpersonal relationships and family functioning. Support groups can help alleviate the social isolation caregivers face and provide opportunity to interact with other caregivers in similar situations.
Education about their own burden and emphasis on caregiver health and fitness, along with implementation of various technical advances such as home monitoring and medication dispensers are other methods suggested for improving efficacy and management of caregiver burden. Psychoeducation of the caregiver and skills training improved caregiver burden, albeit temporarily, whereas certain aspects such as mood and coping mechanisms improved even though there was no reduction in caregiver burden. Skills-training entails teaching the caregiver to do the tasks involved in taking care of the patient, especially those which involve complex medical training like physiotherapy exercises, changing catheter bags, and wound dressings.
| Conclusion|| |
We found that majority of the caregivers were first-degree relatives and women constituted a major part of the caregiver group. Caregiver burden was significantly higher in psychiatric illnesses compared to medical illnesses. Overall caregiver efficacy was similar in both study groups, although caregivers of medical illness reported better efficacy in certain conditions. Caregiver neglect can have significant negative outcomes as caregivers have multiple roles and commitments which have to be fulfilled. Interventions to reduce caregiver burden and to improve caregiver efficacy should be implemented to ensure optimal management of both patient and caregiver, and cultural differences also need to be taken into account to design efficient individualized management strategies.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2], [Table 3], [Table 4], [Table 5], [Table 6], [Table 7]