Psychological status and quality of life among primary caregivers of individuals with mental illness: a hospital based study

The study used data from a cross-sectional survey that was conducted among primary caregivers of outpatients seeking treatment at the Institute of Mental Health (IMH) from July 2014 to March 2015. IMH is a tertiary care psychiatric hospital in Singapore that serves a patient population with a wide range of psychiatric illnesses.

A total of 350 primary caregivers were recruited through convenience sampling for this study. Participants in this study were Singapore residents (including Singapore Citizens and Permanent Residents) aged 21 years and above, who were primary caregivers of patients with mental illness such as early psychosis (first episode psychosis), chronic schizophrenia (those with more than 2 years of illness were considered as having chronic schizophrenia), depressive disorders, anxiety disorders, dementia and unknown mental illness (wherein the caregiver did not know the specific name of the illness). The diagnoses were reported by caregivers. The recruitment process comprised advertisements and flyers that were put up in the clinics where potential participants could easily access the details of the research project. Trained research staff was also stationed at the outpatient clinics to recruit potential participants and they would explain the study details prior to consent taking. To be included in the study, participants had to be either literate or capable of understanding English, Chinese, Malay or Tamil language, be the main caregiver and a relative of the person with mental illness, have lived with the person with mental illness for at least 6 months and be involved in providing care and support to the relative with mental health related problems. The main caregiver was defined as a person belonging to the patient’s informal support system who takes care of and is responsible for the patient, and commits most of his or her time to that task without receiving any economic retribution [18].

Ethics approval was obtained from the Institutional ethics Review Board (National Healthcare Group Domain Specific Review Board (DSRB). Written informed consent was obtained from all caregivers before their participation in the study. The questionnaire was either self-administered or administered by trained research assistant for participants who could not read and write. The questionnaire was administered either in the clinic rooms or a quiet corner in the clinic or in the research assessment rooms and it took about 45–60 min per participant. Socio-demographic questionnaire and Family Interview Schedule (FIS) were administered by the interviewer while other questionnaires were self-administered.

A socio-demographic questionnaire was used to obtain data such as age, gender, ethnicity, marital status, education level attained, employment status, income, living circumstances, diagnosis of ill relative, relationship of primary caregiver of ill relative, and medical history. Along with this socio-demographic questionnaire, the brief version of the World Health Organisation Quality of Life instrument (WHOQOL-BREF) was used to assess caregiver’s QOL. FIS was used to assess the impact of caregivers. Psychological status among caregivers was assessed using General Anxiety Disorder (GAD-7) and Patient Health Questionnaire (PHQ-9) scales.

The World Health Organization Quality of Life assessment-abbreviated version (WHOQOL-BREF) [19] is a 26-item, self-administered psychometrically cross-cultural instrument developed in 23 centres from developing and developed countries. This instrument has been well validated in Asian samples [20]. It is available in 19 different languages and is a subjective assessment of an individual’s perceived QOL in the past 2 weeks in four domains: physical health, psychological, social relationships and environment. It has an additional two items for assessing overall QOL and general health. All items are constructed on variations of a 5-point Likert Scale, with scores from 1 to 5, enquiring on “how much”, “how completely, “how often”, “how good” or “how satisfied” the individual felt. Domain scores are scaled in a positive direction, with higher scores denoting higher QOL except for items 3, 4 and 26 which need to be reversed scored. Since the current study focuses on the association between QOL and other variables we used the raw scores without transforming them using the approach suggested by Alshubaili et al. [21]. The Cronbach’s alpha of the different domains in the current study was as follows - Physical health 0.80, Psychological 0.82, Social relationships 0.75 and Environment 0.83. While WHOQOL-BREF has not been validated among caregivers of persons with mental illness in Singapore, it has been used among caregivers in other Asian countries such as India and Malaysia [22, 23]. The overall internal consistency of WHOQOL-BREF scale in this sample was high (Cronbach’s alpha =0.93).

Family Interview Schedule (FIS) [24] is a multi-sectional instrument that captures the perceptions of family members on several familial and cultural factors as well as relatives’ perceptions of factors that may influence the outcome of mental disorders. Four sections of the questionnaire were administered including impact, stigma, service providers, and attribution, but only the impact on informant section of the original questionnaire has been used in the current study. The section on impact of caregiving consists of four questions relating to social problems, interpersonal strain among family members, work related problems and financial difficulties as a result of their relative’s illness. Scoring is based on how caregiving has affected their life ranging from ‘almost never or not at all’ to ‘almost always or a lot’ in terms of each domain. The effect on each domain is assessed both in the past (in general) and that expected in the future. The past scores were used for analysis in the current study. The internal consistency of FIS in this sample was high (Cronbach’s Alpha = 0.74).

Patient Health Questionnaire (PHQ-9) is a 9-item self-administered instrument used to identify depression, panic disorder as well as assess stress and functional outcome of participants. The nine items assess symptoms and one question assesses functional impairment. Items are scored on a scale of 0 (not at all) to 3 (nearly every day). The PHQ-9 scale has been used in the target population i.e. caregivers of people with severe mental illness [25] and is a useful tool in assessing depression in the primary caregivers. Cut-off scores of more than 10 as reported in other studies were used to identify people with depression. A systematic review of studies using PHQ-9 concluded that it has good sensitivity and specificity for detecting depressive disorders [26]. PHQ-9 has been validated in terms of criterion validity, convergent validity and reliability, and it appears to be a valid and reliable instrument for screening depression in the primary care setting in Singapore [27]. The internal consistency of PHQ-9 in this sample was high (Cronbach’s alpha = 0.88).

Generalized Anxiety Disorder (GAD-7) is a 7-item self-administered instrument designed primarily as a screening and severity measure for generalized anxiety disorder. Each GAD-7 item is scored on a scale of 0 to 3 and has a total score range of 0 to 21. A score of 10 or greater is recommended as a cut-off point for further evaluation when screening for anxiety disorders [28]. Sensitivity and specificity of this instrument (optimal cut-off point at 10) was 89% and 82% respectively [28]. This instrument has been validated among the general population in Singapore [29]. The internal consistency of GAD-7 in this sample was high (Cronbach’s alpha = 0.89).

All statistical analyses were performed using the SPSS version 23. Descriptive analyses were performed to calculate the frequencies and percentages for the basic socio-demographic variable and mean and standard deviation for the WHOQOL-BREF, PHQ-9, and GAD-7 variables. Multiple linear and logistic regression analyses were used to examine socio demographic correlates of QOL, PHQ-9 and GAD-7, after adjusting for all socio-demographic characteristics. Age group, ethnicity, gender, marital status, education, employment status, relationship of primary caregivers with ill relative, living arrangements, diagnoses of relative with mental health problems were included as predictors of QOL, PHQ-9 and GAD-7 scores. In order to establish psychological status and QOL attributed to burden of taking care of someone who had the mental illness, FIS scores were analysed as one of the covariates while examining the effects of socio-demographic predictors on psychological status and QOL in regression analyses. In these regression analyses, possible multi-collinearity between predictor variables was determined by obtaining the variance inflation factor (VIF). If the VIF was more than 10, multi-collinearity was considered. The model fit of logistic regression models were tested using Hosmer-Lemeshow goodness-of-fit tests. Statistical significance was evaluated at the 0.05 level using 2-sided tests.

The socio-demographic characteristics of the primary caregivers are presented in Table 1. Eleven participants were withdrawn from the study due to their failure to complete the questionnaires, resulting in a total of 339 participants whose data were analysed subsequently. The mean age of the caregivers was 49.7 years (SD = 13.2), ranging from 21 to 82 years, with a preponderance of females (67.6%), aged 50–64 years old (45.7%), Chinese (57.5%), secondary level education (43.1%), married (65.2%), and employed (64.9%). Majority of primary caregivers were parents (34.8%) of the ill relative, lived with their spouse (46%) and had relatives with a diagnosis of chronic schizophrenia (39.5%).The mean (SD) FIS scores was 4.28 (3.25).

18.3% of primary caregivers had symptoms of depression (based on PHQ-9 cut-off of 10 or greater) while 12.7% had symptoms of anxiety (based on GAD-7 cut-off point of 10 or greater). Socio-demographic correlates of symptoms of depression and anxiety are shown in Table 2. Multiple logistic regression analyses revealed that primary caregivers aged between 35 and 49 years and 50–64 years (compared with those 65 years and above), those who were unemployed, living with others, providing care to those diagnosed with dementia and with higher FIS scores were significantly associated with higher risk of symptoms of depression whilst those who cared for son/daughter were associated with lower risk of symptoms of depression. Those living with others and having higher FIS scores were associated with higher risk of symptoms of anxiety.

The mean (SD) for the QOL domains were as follows - physical health 25.58 (4.36), psychological 9.71 (2.39), social relationships 20.44 (3.83) and environment 27.35 (4.6) respectively. Socio-demographic correlates of QOL domains are shown in Table 3. Multiple linear regression analyses revealed that primary caregivers who were widowed (β = 2.93) (compared with those were married) were significantly associated with higher scores in the physical health domain whilst those who had lower education (no formal/primary (β = −3.39), secondary (β = −1.66), vocational (β = −2.59) and A level/Pre-university/Diploma (β = −1.69) (compared to those with University or above) and had higher FIS scores (β = −-0.49) were associated with lower physical health domain scores. We also found that those living with others (β = −2.30), had no formal/primary education (β = -3.35) and with higher FIS scores (β = −0.51) were associated with lower social relationships domain scores. Primary caregivers who were single (β = −1.93) or divorced/separated (β = −1.50), those who were unemployed (β = −1.03), caring for spouse (β = −0.82), living with children (β = −1.38) and with higher FIS scores (β = −0.19) were significantly associated with lower psychological domain scores. We also found that those with no formal/primary (β = −3.74) and secondary education level (β = −2.06), those living with children (β = −2.45) and with higher FIS scores (β = −0.59) were significantly associated with lower scores in the environmental domains.

Association between QOL and psychological status variables is shown in Table 4. Multiple linear regression analyses after adjusting for socio-demographic variables, other psychological status and FIS scores revealed that those with symptoms of depression were significantly associated with low QOL across all four domains of physical health, psychological, social relationships and environment. Caregivers with symptoms of anxiety were only significantly associated with low QOL in the domain of social relationships.