INTRODUCTION
According to the National Mental Health Survey Report[1] mental illnesses are health conditions involving changes in emotion, thinking, or behavior (or a combination of these). Mental illnesses are associated with psychological distress and deterioration in activities of daily living. The lifetime prevalence of mental disorders was found to be 13.7%. The prevalence rate of schizophrenia and other psychosis, mood disorders, the neurotic and stress-related disorders was found to be 0.64%, 5.6%, and 6.93% respectively. With the data on the prevalence of mental disorders in India, it is quite clear that mental disorder in an alarming situation and immediate care is necessary.
Measuring the psychosocial problems in caregivers of persons with mental illness
There is ample literature stating that caring for an individual with mental illness is burdensome and stressful to many family members and contributes to psychiatric morbidity. challenges related to caregiving of persons with mental illness can be physical, psychological, and social, as issues related to caring burden, family functioning, and caregiver resilience.
- Physical Health: Research studies on the physical health of caregivers of persons with mental illness have shown that around three-fifths of caregivers have poor health status (including heart attack/heart disease, cancer, diabetes, and arthritis) and functional disability when compared to non-caregivers. Moreover, these studies also stated that caregivers suffer from increased rates of physical ailments (including acid reflux, headaches, and pain/aching), an increased tendency to develop serious illnesses, and high levels of obesity and bodily pain.[2,3]
- Psychological Distress: Long-term caregiving may lead to emotional and behavioral problems in caregivers, social isolation, financial crunch, poor quality of life, poor and physical and mental health.[4] Thus, the psychological impact of caregiving on family members is yet another area that alters the quality of caregiving. Literature shows that “psychological distress” is associated with different combinations of symptoms ranging from depression and general anxiety symptoms to personality traits, functional disabilities, and behavioral problems. Research has shown psychological distress such as anxiety, depression, and insomnia among caregivers of psychiatric out-patients is twice as high as in the general population.[5,6]
- Social Problem: Saleh et al.[7] showed that 15% of caregivers of persons with mental illness have been experiencing stigma, social isolation, and poor support. Research finding reveals that social support is important for the well-being of the family affected by mental illness families and collaborative plans should include strategies to assist family members and consumers in dealing with stigma and poor social support.[8]
- Careburden: Caring for a person with mental illness is an upsetting stressor in any family, regardless of its strengths and resources and coping present in the family member with severe mental illness. The presence of a person with mental illness impacts family members in several ways, disrupts the family dynamics, and deterioration of occupational and social functioning, collectively enhancing the burden of care.[9,10]
- Family Functioning: Theories related to family functioning indicate that if a family is having a long stay person with mental illness, in the family, the overall family dynamics (family boundaries, power structure, problem-solving and decision-making, communication, role functioning, cohesion, and behavior control) of the family is disrupted leading to family conflicts and poor prognosis of the disorder.[11,12]
- Caregiver Resilience: If family caregivers are resilient they can cope well with family issues.[13] Resilience theory focuses on the strengths possessed by individuals or families that enable them to overcome adversity.[14,15]
- Expressed Emotions: EE can be recognized as a severe psychosocial stressor and elevates the recurrence of the illness. EE comprises criticism, hostility, and emotional over-involvement (EOI). Critical comments are basically abusive words by caregivers when the patient is unable to perform the given activities accordingly. Hostility in another hand can be rated as a consequence of unmanageable anger and irritation followed by critical comments and leads to rejection of the patient. Hostility refers to emotional and physical violence towards the patient. EOI refers to over-emotionality and overprotective behavior toward the patient.[16]
Need for the study
Although numerous studies have been conducted on family caregivers of mentally ill patients in India, a comprehensive scientific study on the development of a tool for caregivers has not been conducted to determine their problems, factors, and challenges. There are established tools to assess psychosocial problems (depression, anxiety stress, care burden, expressed emotions, family functioning, etc) in caregivers of persons with mental illness. But no specific tool is there to see the overall psychosocial issues among caregivers. Therefore, in this study, a tool has been developed (Psychosocial Inventory for Caregivers - PIC) to measure the psychosocial issues in caregivers of persons with mental illness in the Indian context. In India, to date, there are very less tools that can comprehensively assess the psychosocial issues related to caregiving. So, the development Psychosocial Inventory for Caregivers (PIC) can help mental health professionals to measure issues related to caregiving and can encompass different domains of caregiving issues/problems on one scale.
AIM AND OBJECTIVE OF THE STUDY
Aim:
To develop and test the Psychosocial Inventory for Caregivers (PIC) of Persons with Mental Illness.
Objectives:
- 1. To develop a psychosocial inventory for caregivers of persons with mental illness and to assess its applicability and suitability in caregivers of persons with mental illness.
- 2. To assess the reliability (internal consistency) and validity of the developed tool.
Operational definitions
A person with Mental Illness: The person diagnosed with mental illness based on (ICD-10) criteria[17] by a psychiatrist in the in-patient/out-patient department of LGB Regional Institute of Mental Health, Tezpur.
Caregiver of Person with Mental Illness: Adult caregivers staying at hospital premises with the patient and fulfilling >3 criteria to be a caregiver proposed by Pollak and Perlick[18] which include [(spouse, parent or spouse equivalent, b) most frequent contact with the patient, c) supports patient financially, d) most frequent collateral participant in patient’s treatment, e) is the person contacted in case of an emergency)].
Methodology
The present study used a cross-sectional descriptive research design. Data was collected by using a self-reported questionnaire and conducting personal interviews (PI) with caregivers of persons with mental illness. Permission for translating the scale into the native language was taken from all the concerned authors. WHO guidelines were used for translation purposes. Back Translation, Forward Translation, and Expert Validation was done with the help of experts. The person with mental illness who were taking treatment regularly from the in-patient/out-patient department of LGB Regional Institute of Mental Health of Tezpur, Assam, and their respective caregivers formed the universe of the study. Caregivers of persons with mental illness were the samples for the present study. Convenient sampling was used to select 340 samples from the population. According to Hinkin et al.[19] the ‘item to response ratio’ must be ranged from 1:4 to 1:10. Here, in the present study, the researcher selected an item to response ratio of 1:4, which meant that the total number of samples should be more than 4 times the total items of the new scale. Therefore, the final sample size was kept as (total number of items in the new scale = 84 *4) which equaled 336 samples. Hence 340 samples were selected.
Description of the tools used in the study
- Socio-demographic and clinical data sheet: Socio-demographic and clinical sheet was self-prepared by the researcher to assess the age, religion, community, education, occupation, domicile, marital status, family type, and family income of both patients and caregivers. A clinical data sheet was developed to assess the onset of illness, history of illness, total duration of illness, number of admission, and diagnosis of the patient with mental illness. The socio-demographical and clinical data sheet was validated by 03 subject matter experts from the field of psychiatric social work.
- Patient Health Questionnaire (PHQ)[20]: The Patient Health Questionnaire of 9 items was developed for assessing depressive severity. It followed a Likert scoring and responses are recorded as 0, 1, 2, or 3 for “not at all,” “several days,” “more than half the days,” and “nearly every day,” respectively. The total score of the scale is obtained by summing up all the responses, giving a range of total scores between 0 – 27. The cut-off points of 5, 10, 15, and 20 represented mild, moderate, moderately severe, and severe levels of the problem. Internal reliability for the PHQ-9 is reported as “excellent” with an Cronbach’s α of 0.89 and 0.86, whereas, test-retest reliability is excellent with a kappa of 0.84.
- Depression, Anxiety, and Stress Scale (DASS)[21]: The Depression, Anxiety, and Stress Scale - 21 Items (DASS-21) is designed to measure the emotional states of depression, anxiety, and stress. Cronbach Alpha of DASS 21 in was found to be falling in the range of 0.74 to 0.84. It is a Likert scale: 0 means did not apply to me, 1 = Applied to me to some degree, 2 = Applied to me to a considerable degree, and 3 = Applied to me very much. DASS-21 needs to be multiplied by 2 to calculate the final score. Scoring cut off of normal, mild, moderate, severe, and extremely severe are-
Depression (0-4, 5-6, 7-10, 11-13,14+), Anxiety (0-3, 4-5, 6-7, 8-9, 10+), Stress (0-7,8-9,10-12,13-16,17+)
- Multi-dimensional Scale for Perceived Social Support (MSPSS)[22]: It was 12 item, 7-point Likert scale designed to measure perceptions of support from 3 sources: Family, Friends, and a Significant other. It was validated to be used in both clinical and non-clinical settings. In studies, it was found that reliability was in the range of 0.54 to 0.73. MSPSS had a Cronbach’s alpha of 0.92. The scale followed a Likert scoring (1 = very strongly disagreed, 2 = strongly disagreed, 3 = mildly disagreed, 4 = neutral, 5 = mildly agreed, 6 = strongly agreed, 7 = very strongly agreed). The total score was obtained by summing up all the 12 items, then dividing by 12. The sub-domain items and their cut off are as follows-
Sub domains are significant other (1,2,5&10), friends (6,7,9 &12), family (3,4,8 &11) and cut offs are low support (1 to 2.9), moderate support (3 to 5) and high support (5.1 to 7)
- Zarit Burden Interview (ZBI)[23]: It was a 22-item interview schedule that does a comprehensive assessment of both the objective and the subjective burden of the individual. The Cronbach’s alpha value for the ZBI items was 0.93. It comprised a Likert style format, 0: Never, 1: Rarely, 2: Sometimes, 3: Quite Frequently, 4: Nearly Always. The total score could be calculated by summing up all the items (ranges 0-88) and the cut off is as follows-
Cut offs are Little/no burden (0-21), mild to moderate burden (21-40), moderate to severe (41-60), severe burden (61-88)
- General Functioning Family Assessment Device (GF-FAD)[24]: General functioning was a subscale of the McMaster Family Assessment Device that had been designed to measure family functioning. It assessed the seven domains in a family, like problem-solving, communication, roles, affective responsiveness, affective involvement, behavioral control, and general functioning. It had different versions (60 items, 12 items, and 3 items), the present study used the 12-item version of the scale. Cronbach’s alpha ranged from 0.79 to 0.81, indicating good internal consistency of the instrument. The scale followed a Likert-type scoring pattern from 1 to 4. 1 = strongly agree, 2 = agree, 3 = disagree and 4 = strongly disagree. The higher the score, the more problematic the family member perceives the family’s overall functioning.
- Connor-Davidson Resilience Scale (CD-RISC)[25]: This was a self-reported questionnaire developed to screen people for high, intermediate, or low resilience and is appropriate for use in a clinical setting. It has 2 items, 10 items, and 25 items versions. The present study used 25 items scale because of its rich psychometric properties. Cronbach alpha of the scale ranges from 0.30 to 0.89. The 25-item scale is evaluated in a 5-point Likert scoring ranging from 0 to 4, where, not true at all (0), rarely true (1), sometimes true (2), often true (3), and true nearly all of the time (4). The ranges are between 0 to 100. Higher scoring indicated, higher resilience and vice versa.
- Family Questionnaire (FQ)[26]: It was a brief self-report questionnaire developed to measure the EE (expressed emotion) in the form of emotional over-involvement and critical comment,/hostility) of caregivers of persons with a major mental health disorder. Cronbach alpha ranging from. 80 and. 69. The scoring pattern of the scale was dichotomized into high or low EOI and/or CC/hostility based on cut-off scores - Total score was obtained by summing up all the items.
Cut offs are emotional over-involvement (high=27, low=23); Critical comment/hostility (High=27, low=23)
Statistical analysis
In the present study quantitative analysis of the data was done by using IBM- Statistical Package for the Social Sciences (SPSS) version 25.0 for Windows was used.
Ethical clearance
Ethical clearance to conduct the study was given by the Institute Ethics Committee (IEC), of LGB Regional Institute of Mental Health, Tezpur. The participants were oriented about the nature of the study. They were explained that participation is entirely voluntary. After explaining the rationale of the study, proper written informed consent was get signed by them.
RESULTS
The mean age of the patient was M = 32.3 and the standard deviation was SD = 11.6. The majority of the caregivers were male (72.6%), Hindu (75.9%), from the general category (37.1%), hailing from a semi-urban background (66.5%), mostly married (60.9%), educated up to high school (34.4), unemployed (49.4%), with the nuclear family type (61.8%) and having upper-lower socioeconomic status (59.7%). The mean ages of the caregivers were M = 37.5 and the standard deviation was SD = 11.8. Most of the caregivers were educated up to graduation (29.1%), working in the private sector (31.5%), related as a brother (35.0%) to the patient, and around (9.1%) left their job because of their patient’s illness.
In the clinical profile, the majority of patients were having the onset of illness as insidious (76.5%), with a history of mental illness in the family (48.5%), diagnosed with Schizophrenia (65.9%), with the primary caregiver (97.9%). The mean total duration of the illness (in days) of the patient was found to be (M = 494.9; SD = 636.1) and the mean total duration of the caregiving (in days) of the caregivers was found to be (M = 494.9; SD = 636.0).
The magnitude of the problems in caregivers of persons with mental illness (n = 340) with Pre-existing established tools
As cited in Table 1 physical health problems were found to be in (38.2%) of the caregivers, severe depression in (0.6%) of the caregivers, severe anxiety issues in (26.2%) of the caregivers, and mild stress in (11.8%) of caregivers. Social support from significant others was found to be poor in (45.3%) of the caregivers, social support from friends was found to be poor in (45.3%) of the caregivers, and social support from family was found to be poor in (46.2%) of the caregivers. The level of care burden was severe in (9.4%) of the caregiver, problem-related with family functioning was present in (73.8%) of the caregivers, emotional over-involvement was high in (85.0%) of the caregivers, and critical comment/hostility was high in (55.3%) of the caregivers.
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Table 1: Magnitude of the problems in caregivers of persons with mental illness (n=340) with PIC Scale
As cited in Table 1 the findings of the Physical Health Subscale of the PIC scale showed that the majority of caregivers having moderate physical health problems (36.2%), and (10.9%) were having severe physical health problems. In the Psychological Distress Subscale of the PIC Scale, majority of respondents were having a moderate level of psychological distress (42.1%) and to severe level of psychological distress was present (17.1%) of respondents. In the Social Support Subscale of the PIC Scale moderate level of problems in social support was present at (49.7%), followed by a severe level of social support problems at (20.6%). In the Family Functioning Subscale of the PIC Scale, a moderate level of problem related to family functioning was present in (41.5%) of respondents, whereas, a severe level of problem-related to family functioning was present in (19.1%) of the respondents. In the resilience subscale of the PIC Scale, moderate problem related to resilience was present in 38.8% of the respondent and severe problem related to resilience was present in 14.1% of the respondent. In the Care Burden Subscale of the PIC Scale moderate level of care, the burden was present in (50.9%) of the caregivers followed by a severe level of care burden (36.2%). In the Critical Domain Subscale of the PIC Scale, severe level of critical comment was present in 34.4% of the caregivers, a severe level of over-involvement in 34.4% of the caregivers, and a severe level of hostility in 19.1% of the caregivers.
As cited in Table 2 the internal consistency (Cronbach’s Alpha) of the PIC scale was found to be 0.88. Mean (141.85) and Standard Deviation (16.31).
Table 2: Internal Consistency (Cronbach Alpha), mean and standard deviation of the final 62 item scale (Psychosocial Inventory for Caregivers)
This Table 3 showed the internal consistency, mean and standard deviation of each factor or domain[Physical Health Subscale (M = 24.1, SD = 5.29, α = 0.88); Psychological Distress Subscale (M = 20.3, SD = 4.53, α = 0.88); Social Support Subscale {Family Support (M = 8.39, 2.03, α = 0.68), Community Support (M = 6.45, SD = 1.64, α = 0.67)}; Family Functioning Subscale (M = 10.5, SD = 2.45, α = 0.76); Resilience Subscale (M = 14.6, SD = 12.7, α = 0.83); Care Burden Subscale (M = 12.4, SD = 6.40, α = 0.75); EE = Expressed Emotion Subscale {Critical Comment (M = 14.3, SD = 3.23, α = 0.81), Emotional Over involvement (M = 16.1, SD = 19.2, α =0.89), Hostility (M = 14.3, SD = 4.86, α = 0.92)}], along with a total number of item in each of the domain.
Table 3: Inter consistency (Cronbach alpha) of all the 10 factors of the scale (Psychosocial Inventory for Caregivers)
This Table 4 showed the reliability of the PIC, the study used Cronbach Alpha and CR, and the value was above 0.70. The convergent validity of PIC was acceptable because the average variance extracted (AVE) was above 0.5.
Table 4: Composite Reliability and convergent validity [{Loading, Cronbach Alpha, Composite reliability (CR), Average Variance Extracted (AVE)}] of Psychosocial Inventory for caregivers (PIC) Scale
In this Table 5, the bold numbers are the square root of AV (average variance). The bold numbers listed diagonally are the root of the variance shared between the constructs and their measures. The off-diagonal elements are the correlation among the construct. In this table square root of the average variance explained was greater than the inter-factor correlation for the PIC scale Hence, discriminant validity was established for the scale (Psychosocial Inventory for Caregivers).
Table 5: Discriminant Validity of the Psychosocial Inventory for caregivers (PIC) Scale
DISCUSSION
Socio-demographic and clinical findings
The majority of the caregivers were male (72.6%), Hindu (75.9%), from the general category (37.1%), hailing from a semi-urban background (66.5%), mostly married (60.9%), educated up to high (34.4), unemployed (49.4%), with the nuclear family type (61.8%) and having upper-lower socioeconomic status (59.7%). The mean ages of the caregivers were M = 37.5 and the standard deviation was SD = 11.8. Most of the caregivers were educated up to graduation (29.1%), worked in the private sector (31.5%), related as a brother (35.0%) to the patient, and around (9.1%) left their job because of their patient’s illness. The above-mentioned findings were in line with other Indian studies conducted in the past on persons with different mental illness and their caregivers.[5,6,27] In the clinical findings, the majority of patients were having the onset of illness as insidious (76.5%), with a history of mental illness in the family (48.5%), diagnosed with Schizophrenia (65.9%), with a primary caregiver (97.9%). The mean total duration of the illness (in days) of the patient was found to be (M = 494.9; SD = 636.1) and the mean total duration of the caregiving (in days) of the caregivers was found to be (M = 494.9; SD = 636.0). A similar kind of clinical profile was found in other Indian studies and the findings were in line with the present study.[8,9,10,28]
The magnitude of problems in caregivers of persons with mental illness
The findings of the Physical Health Questionnaire (PHQ) showed that the majority of caregivers were having physical health problems (38.2%), whereas, the findings of the Physical Health Subscale of the PIC scale showed that the majority of caregivers were having moderate physical health problems (36.2%), and (10.9%) were having severe physical health problems. Studies conducted in past on the physical health status of caregivers also came up with similar findings. The study conducted by Ancoli-Israel & Cooke[29] on insomnia and its effect on functioning in elderly caregivers’ populations showed that 45% – 62% of older adults have sleep-disordered breathing, and around 45% have periodic limb movements of sleep compared to less than 10% in young adults. The study conducted by Newman et al.[30] showed that hypertension and cardiovascular disease were also considered to be major physical symptoms in caregivers. In a study by Tong et al.[31] the prevalence of back pain in caregivers of persons with mental illness was found to be 43.5%. Another study by Gupta et al.[32] showed a high prevalence rate of headache (48.0%) and hurt burnt (31.7%) in caregivers of persons with mental illness.
In the present study, Depression Anxiety & Stress Scale showed a moderate level of depression in (37.4%) of respondents and a severe level of depression in (0.6%) of the respondent. The level of anxiety was at a moderate level in (35.4%) of respondents, severe in (26.2%) of the respondents, and extremely severe in (3.8%) of the respondents. The level of stress was at a mild level in (11.8%) of the respondent. In the Psychological Distress Subscale of the PIC Scale, majority of respondents were having a moderate level of psychological distress (42.1%) and to severe level of psychological distress was present (17.1%) of respondents. The study conducted by Vijayalakshmi[33] on depression in caregivers of persons with mental illness showed a prevalence of 42.5%. Another study by Stanley, Bhuvaneswari & Bhakyalakshmi[34] showed depression (12%), anxiety, and stress (24% each) in caregivers of persons with mental illness. A study by McGilloway[35] showed a high level of psychological distress (31.2%) in caregivers of persons with mental illness.
The Multidimensional Scale for Perceived Social Support showed social support from significant others was found to be poor in caregivers (45.3%), and support from friends and family was also found to be poor (43.5%) and (46.2%) respectively. In the Social Support Subscale of the PIC Scale moderate level of problems in social support was present in (49.7%), followed by a severe level of social support problems in (20.6%). The study conducted by Dam et al.[36] showed that poor social support was an important predictor of stress. Another study by Cohen & Wills[37] showed that poor quality of social support can be detrimental and lead to adverse physical and mental health outcomes. Chien et al.[38] highlighted that poor social support leads to poor functioning and poor prognosis.
The General Functioning Scale of Family Assessment Device highlighted the problem related to family functioning in the majority of the respondents (73.8%). In the Family Functioning Subscale of the PIC Scale, a moderate level of problems related to family functioning was present in (41.5%) of respondents, whereas, a severe level of problems related to family functioning was present in (19.1%) of the respondents. A similar finding was reported in the study where it was highlighted that caregivers with higher levels of care burden have poor general functioning.[39] Another study by Sun et al.[40] showed that poor family functioning and care burden were predictors of depression. Poor levels of family functioning, and poor levels of cognitive function due to long hours of caregiving were related to higher care burden.[41]
Connor-Davidson Resilience Scale showed poor resilience in the majority of respondents (Mean = 39.3; Standard Deviation = 14.2). In the resilience subscale of the PIC Scale, moderate problem related to resilience was present in 38.8% of the respondent and severe problem related to resilience was present in 14.1% of the respondent. Studies conducted by Joling et al.[42] showed poor resilience and highlighted that having a negative outlook, perceived loss of social relationships, and feeling isolated are the main cause of poor resilience in caregivers. A study conducted by Bekhet & Avery[43] highlighted poor resilience is common in caregivers of persons with mental illness because of stressful and difficult circumstances, demand, frustration, lack of social support, draining/exhaustion, and negative feelings (sadness, anger).
In Zarit Burden Interview Scale care burden was found to be at a moderate to severe level (53.8%) in caregivers. In the Care Burden Subscale of the PIC Scale moderate level of care, the burden was present in (50.9%) of the caregivers followed by a severe level of care burden (36.2%). A study conducted by Hajebi, Naserbakht & Minoletti[44] showed a moderate to severe level of care burden in the majority (73.0%) of caregivers of persons with Schizophrenia. The study explained that severe care burden in primary caregivers is because by relapses in the patient, poor prognosis, high level of expressed emotion in the family, and lesser awareness of the illness. Further, they explained that stressors for patients act as a burden for the primary caregiver, which was in line with the findings of the present study. Moreover, the study by Kuchhal et al.[45] showed a severe level of care burden in 42.3% of their caregivers and put socio-demographic variables like (low education, unemployment, and low income) as a reason for care burden in the caregivers of persons with mental illness. All these points supported the findings of the present study.
The Family Questionnaire highlighted the high level of emotional over-involvement in 85.0% of the caregivers and critical comment was high in 55.3% of the caregivers. In the Critical Domain Subscale of the PIC Scale, severe level of critical comment was present in 34.4% of the caregivers, a severe level of over-involvement in 34.4% of the caregivers, and a severe level of hostility in 19.1% of the caregivers. In a study by Wang et al.[46] the critical comment was found to be at 21.7% and emotional over-involvement was 43.4%, which was supporting the findings of the present study.
Internal Consistency (Cronbach Alpha), mean and standard deviation of the final 62-item scale (Psychosocial Inventory for Caregivers)
The internal consistency (Cronbach’s Alpha) of the PIC scale was found to be 0.88. Internal consistency of the pre-existing established tools was also found to be in line with the properties of the PIC scale. The internal consistency (Cronbach’s Alpha) of the Physical Health Questionnaire scale was found to be 0.86.[20] Cronbach Alpha of Depression Anxiety Stress Scale (DASS 21) in different studies was found to be falling in the range of 0.78 to 0.89 and 0.86 to 0.94.[47,48] Cronbach Alpha of the Multi-dimensional Scale for Perceived Social Support (MSPSS) was found to be in the range of 0.54 to 0.73,[49] 0.86 to 0.90.[46] Cronbach Alpha of Zarit Burden Interview (ZBI) was estimated as 0.93.[23] Cronbach’s alpha of the General Functioning scale of the Family Assessment Device ranges from 0.79 to 0.81, indicating good internal consistency of the instrument.[50,51] Cronbach Alpha of Connor Davidson Resilience Scale was found to be in the range of 0.30 to 0.89.[52,53] Cronbach alpha of the Family Questionnaire to evaluate expressed emotions ranges from 0.69 and 0.80.[26]
Reliability, Convergent, and discriminant validity of the PIC Scale
A study on the psychometric properties of the tool has shown that if the value of CR is more than 0.70, the reliability of the construct is acceptable.[54] The convergent validity of PIC was acceptable because the average variance extracted (AVE) was above 0.5. According to Pervan et al.[55] for the establishment of convergent validity the expected average variance (AV) should be greater than 0.5, also Fornell and Larcker[56] have suggested that if the average variance (AV) falls below the cutoff of 0.5 but CR falls above 0.6, therefore the convergent validity of a specific construct stands adequate. Hence, in the case of PIC, both reliability and convergent validity were established. According to Gu et al.[57] for the discriminant validity establishment, the diagonal element should be larger than the off-diagonal elements. In the case of the PIC scale, the square root of the average variance was greater than the inter-factor correlation for the PIC scale Hence, discriminant validity was established for the PIC scale.
CONCLUSION
In recent years, there has been a growing concern about the consequences experienced by patients’ caregivers. Various tools have been developed separately to measure the various consequences related to caregiving. With the development of a new scale, a comprehensive assessment can be done to know the various factors and consequences related to caring for a person with mental illness with a single tool. This extension of this understanding of the caregiver experience can help practitioners/professionals improve interventions and improve caregiver well-being. This tool will make it possible to evaluate caregivers who face difficulties and might need additional support.
Financial support and sponsorship
Nil.
Conflicts of interest
There are no conflicts of interest.
Acknowledgement
Sincere thanks to the study participants.
REFERENCES
1. Murthy RS. National mental health survey of India 2015–2016. Indian J Psychiatry 2017;59:21–6.
2. Schulz R, Sherwood PR. Physical and mental health effects of family caregiving. J Soc Work Educ 2008;44:105–13.
3. Yiengprugsawan V, Harley D, Seubsman SA, Sleigh AC. Physical and mental health among caregivers:Findings from a cross-sectional study of Open University students in Thailand. BMC Public Health 2012;12:1111.
4. Ae-Ngibise KA, Doku VC, Asante KP, Owusu-Agyei S. The experience of caregivers of people living with serious mental disorders:A study from rural Ghana. Glob Health Action 2015;8:26957.
5. Janardhana N, Raghunandan S, Naidu DM, Saraswathi L, Seshan V. Care giving of people with severe mental illness:An Indian experience. Indian J Psychol Med 2015;37:184–94.
6. Raj EA, Shiri S, Jangam KV. Subjective burden, psychological distress, and perceived social support among caregivers of persons with schizophrenia. Int J Soc Psychiatry 2016;32:42–9.
7. Saleh S, Zahedi Asl M. Correlation of social support with social health of psychiatry veterans wives. Iran J War Public Health 2014;6:201–6.
8. Akbari M, Alavi M, Irajpour A, Maghsoudi J. Challenges of family caregivers of patients with mental disorders in Iran:A narrative review. Iran J Nurs Midwifery Res 2018;23:329–37.
9. Jagannathan A, Thirthalli J, Hamza A, Hariprasad VR, Nagendra HR, Gangadhar BN. A qualitative study on the needs of caregivers of inpatients with schizophrenia in India. Int J Soc Psychiatry 2011;57:180–94.
10. Janardhana NR, Naidu DM, Saraswathy L, Seshan V. Unsung Samaritan in the lives of people with mental illness:An Indian experience. Indian J Soc Work 2014;75:1–26.
11. Riley G, Gregory N, Bellinger J, Davies N, Mabbott G, Sabourin R. Carer's education groups for relatives with a first episode of psychosis:An evaluation of an eight-week education group. Early Interv Psychiatry 2011;5:57–63.
12. Cairns VA, Reid GS, Murray C. Family members'experience of seeking help for first-episode psychosis on behalf of a loved one:A meta-synthesis of qualitative research. Early Interv Psychiatry 2015;9:185–99.
13. Zauszniewski JA, Bekhet AK, Suresky MJ. Resilience in family members of persons with serious mental illness. Nurs Clin 2010;45:613–26.
14. Dias R, Simões-Neto JP, Santos RL, Sousa MF, Baptista MA, Lacerda IB, et al. Caregivers'resilience is independent from the clinical symptoms of dementia. Arq Neuropsiquiatr 2016;74:967–73.
15. Palacio GC, Krikorian A, Gómez-Romero MJ, Limonero JT. Resilience in caregivers:A systematic review. Am J Hosp Palliat Care 2020;37:648–58.
16. Amaresha AC, Venkatasubramanian G. Expressed emotion in schizophrenia:An overview. Indian J Psychol Med 2012;34:12–20.
17. Cooper JE. Pocket Guide to the ICD 10 Classification of Mental and Behavioural Disorders with Glossary and Diagnostic Criteria for Research; ICD-10:DCR-10. Edinburgh U.A: Churchill Livingstone; 1994.
18. Pollak CP, Perlick D. Sleep problems and institutionalization of the elderly. Top Geriatr Rehabil 1991;4:204–10.
19. Hinkin TR, Tracey JB, Enz CA.
Scale construction:Developing reliable and valid measurement instruments. J Hosp Tour Res 1997;21:100–20.
20. Kroenke K, Spitzer RL, Williams JB. The PHQ-9:Validity of a brief depression severity measure. J Gen Intern Med 2001;16:606–13.
21. Lovibond PF, Lovibond SH. The structure of negative emotional states:Comparison of the depression anxiety stress scales (DASS) with the beck depression and anxiety inventories. Behav Res Ther 1995;33:335–43.
22. Zimet GD, Powell SS, Farley GK, Werkman S, Berkoff KA. Psychometric characteristics of the multidimensional scale of perceived social support. J Pers Assess 1990;55:610–7.
23. Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly:Correlates of feelings of burden. Gerontologist 1980;20:649–55.
24. Epstein NB, Baldwin LM, Bishop DS. The McMaster family assessment device. J Marital Fam Ther 1983;9:171–80.
25. Connor KM, Davidson JR. Development of a new resilience scale:The Connor-Davidson resilience scale (CD-RISC). Depress Anxiety 2003;18:76–82.
26. Wiedemann G, Rayki O, Feinstein E, Hahlweg K. The family questionnaire:Development and validation of a new self-report scale for assessing expressed emotion. Psychiatry Res 2002;109:265–79.
27. Kamil SH, Velligan DI. Caregivers of individuals with schizophrenia:Who are they and what are their challenges?. Curr Opin Psychiatry 2019;32:157–63.
28. Parija S, Yadav AK, Sreeraj VS, Patel AK, Yadav J. Burden and expressed emotion in caregivers of schizophrenia and bipolar affective disorder patients:A comparative study. MAMC J Med Sci 2018;4:68–74.
29. Ancoli-Israel S, Cooke JR. Prevalence and comorbidity of insomnia and effect on functioning in elderly populations. J Am Geriatr Soc 2005;53 (7 Suppl):S264–71.
30. Newman AB, Nieto FJ, Guidry U, Lind BK, Redline S, Shahar E, et al. Relation of sleep-disordered breathing to cardiovascular disease risk factors:The sleep heart health study. Am J Epidemiol 2001;154:50–9.
31. Tong HC, Haig AJ, Nelson VS, Yamakawa KS, Kandala G, Shin KY. Low back pain in adult female caregivers of children with physical disabilities. Arch Pediatr Adolesc Med 2003;157:1128–33.
32. Gupta S, Isherwood G, Jones K, Van Impe K. Assessing health status in informal schizophrenia caregivers compared with health status in non-caregivers and caregivers of other conditions. BMC Psychiatry 2015;15:162.
33. Vijayalakshmi K. Depression and associated factors among caregivers of patients with severe mental illness. Int J Indian Psychol 2016;27:36–46.
34. Stanley S, Bhuvaneswari GM, Bhakyalakshmi S. Mental health status and perceived burden in caregiving spouses of persons with psychotic illness (A study from India). Soc Work Ment Health 2016;14:530–44.
35. McGilloway S, Donnelly M, Mays N. The experience of caring for former long-stay psychiatric patients. Br J Clin Psychol 1997;36:149–51.
36. Dam AEH, de Vugt ME, van Boxtel MPJ, Verhey FRJ. Effectiveness of an online social support intervention for caregivers of people with dementia:The study protocol of a randomised controlled trial. Trials 2017;18:395.
37. Cohen S, Wills TA. Stress, social support, and the buffering hypothesis. Psychol Bull 1985;98:310–57.
38. Chien WT, Chan SW, Morrissey J. The perceived burden among Chinese family caregivers of people with schizophrenia. J Clin Nurs 2007;16:1151–61.
39. Tremont G, Davis JD, Bishop DS. Unique contribution of family functioning in caregivers of patients with mild to moderate dementia. Dement Geriatr Cogn Disord 2006;21:170–4.
40. Sun X, Ge J, Meng H, Chen Z, Liu D. The influence of social support and care burden on depression among caregivers of patients with severe mental illness in rural areas of Sichuan, China. Int J Environ Res Public Health 2019;16:1961.
41. Yu H, Wang X, He R, Liang R, Zhou L. Measuring the caregiver burden of caring for community-residing people with Alzheimer's disease. PLoS One 2015;10:e0132168.
42. Joling KJ, Windle G, Dröes RM, Meiland F, van Hout HP, Vroomen JM, et al. Factors of resilience in informal caregivers of people with dementia from integrative international data analysis. Dement Geriatr Cogn Disord 2016;42:198–214.
43. Bekhet AK, Avery JS. Resilience from the perspectives of caregivers of persons with dementia. Arch Psychiatr Nurs 2018;32:19–23.
44. Hajebi A, Naserbakht M, Minoletti A. Burden experienced by caregivers of schizophrenia patients and its related factors. Med J Islam Repub Iran 2019;33:54.
45. Kuchhal AK, Kuchhal A, Arya V, Pardal PK, Sharma CS, Sharma M. A study of psychological stress and burden on caregivers of schizophrenic patients. Int J Contemp Med Res 2019;6:H1–6.
46. Wang X, Chen Q, Yang M. Effect of caregivers'expressed emotion on the care burden and rehospitalization rate of schizophrenia. Patient Prefer Adherence 2017;11:1505–11.
47. Coker AO, Coker OO, Sanni D. Psychometric properties of the 21-item depression anxiety stress scale (DASS-21). Afr Res Rev 2018;12:135–42.
48. Nordin RB, Kaur A, Soni T, Por LK, Miranda S. Construct validity and internal consistency reliability of the Malay version of the 21-item depression anxiety stress scale (Malay-DASS-21) among male outpatient clinic attendees in Johor. J Med J Malaysia 2017;72:264–70.
49. Stanley MA, Beck JG, Zebb BJ. Psychometric properties of the MSPSS in older adults. Aging Ment Health 1998;2:186–93.
50. Sawant NS, Jethwani KS. Understanding family functioning and social support in unremitting schizophrenia:A study in India. Indian J Psychiatry 2010;52:145–9.
51. Boterhoven de Haan KL, Hafekost J, Lawrence D, Sawyer MG, Zubrick SR. Reliability and validity of a short version of the general functioning subscale of the McMaster family assessment device. Fam Process 2015;54:116–23.
52. Vaishnavi S, Connor K, Davidson JR. An abbreviated version of the Connor-Davidson Resilience Scale (CD-RISC), the CD-RISC2:Psychometric properties and applications in psychopharmacological trials. Psychiatry Res 2007;152:293–7.
53. Khoshouei MS. Psychometric evaluation of the Connor-Davidson resilience scale (CD-RISC) using Iranian students. Int J Test 2009;9:60–6.
54. Naim MF, Lenka U. Linking knowledge sharing, competency development, and affective commitment:Evidence from Indian Gen Y employees. J Knowl Manag 2017;21:885–906.
55. Pervan M, Curak M, Pavic Kramaric T. The influence of industry characteristics and dynamic capabilities on firms'profitability. Int J Financial Stud 2018;6:4.
56. Fornell C, Larcker DF. Evaluating structural equation models with unobservable variables and measurement error. J Mark Res 1981;18:39–50.
57. Gu D, Guo J, Liang C, Lu W, Zhao S, Liu B, et al. Social media-based health management systems and sustained health engagement:TPB perspective. Int J Environ Res 2019;16:1495–510.
