Informal caregivers on the panel were sent an email that included a cover letter explaining the purpose of the study, eligibility criteria, contact information and survey link.
Assurance was given on confidentially of responses and a unique ID was assigned to all
responders. A URL link to the survey programmed in Qualtrics (Qualtrics Inc, Provo, UT) was included in the email. The survey included all measurement instruments pertinent to the study including perceived stress, coping behavior, personality, QOL and sociodemographic
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information. The survey link was open for participants for a 3-month period starting from the date of first email. Reminders were sent bi-weekly to secure maximum responders to survey. All respondents were provided with an honorarium of $10 for participating in the study.
D. Study Measures
World Health Organization Quality of Life – Brief (WHOQOL-BREF): WHOQOL-BREF is a brief version of WHOQOL-100 which was developed and validated across 23 countries.72 WHOQOL-BREF has 26-items which includes one item from each 24 facets of QOL, one item on overall QOL and one item on general health.73 The 24-items representing each facet of QOL are measured using a five-point response format ranging from ‘Very Dissatisfied’ to ‘Very Satisfied’. The items are classified into four domains: physical health (seven items),
psychological health (six items), social relationships (three items) and environment (eight items).
Three items are reversed coded in the questionnaire. The raw scores for each domain were calculated by adding the scores of the item in each domain. The raw scores were transformed to 0-40 using the algorithm provided by the WHOQOL-BREF group.74 A low score on this
instrument indicates poor QOL. The internal consistency reliability of the instrument measured by Cronbach’s alpha was found to be more than 0.70. For respondents with missing data on more than 20% of items, the overall score of QOL was not calculated.
Perceived stress scale: Overall stress levels of the informal caregiver was calculated by the Perceived Stress Scale (PSS) which is a 14-item instrument. It is designed to evaluate the degree of stress as perceived by the individual while facing specific life situations.75 Specifically it asks subjects how often they have had particular thoughts or feelings during the past month. It has been successfully used to measure perceived stress in caregivers in the past.34,39 Sample items from this scale include, “In the last month, how often have you been able to control the way you
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spend your time?” and “In the last month, how often have you felt that you are effectively coping with important changes in your life?” It uses a five-point response format ranging from “Almost never” to “Very often”. Scores were obtained by reverse scoring 7 positive-worded items and taking the score of negatively-worded items as it is. Scores on PSS range from 0 to 56 with higher score indicating more perceived stress. Past studies have found the internal consistency reliability as measured with Cronbach’s alpha to be good (0.84-0.87).76,77 Cohen et al. (1983) found the test-retest reliability of PSS to be 0.85.75 Predictive validity of PSS has been tested on its ability to predict physical and mental health outcomes.75 Perceived stress with measures specific to caregiving were not considered because we are interested in understanding how global trait of personality influences the relationship between perceived stress and coping measures.
Brief Coping Orientation to Problem Experience (Brief COPE): The coping behaviors used by informal caregivers as a result of caregiving stress was determined using the Brief Coping Orientation to Problem Experience (Brief COPE) measure.78 This 28–item instrument is used to capture two broad coping strategies: adaptive coping and maladaptive coping. Adaptive coping is measured by 16-items where each 2 items represent active coping, planning, positive reframing, acceptance, humor, religion, use of emotional support and use of instrumental support.79
Maladaptive coping is measured by 12-items where each 2 items represent self-distraction, denial, venting, substance abuse, behavioral disengagement, and self-blame.79 Each item is measured on a four-point response format ranging from “I haven’t been doing this at all” to “I have been doing this a lot”. Item scores were summed to determine total score on adaptive and maladaptive coping, with higher scores indicating frequent use of coping behaviors. The internal consistency reliability of the scales was found to be between 0.50 and 0.90.78
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Big Five Inventory - 44: Personality traits were measured using the abbreviated version of Big Five Inventory (BFI) personality inventory.80,81 The BFI-44 is a 44-item instrument where the items measure each of the five broad personality domains: neuroticism, extraversion,
conscientiousness, agreeableness and openness. It uses a 5-point Likert response format ranging from ‘strongly agree’ to ‘strongly disagree’. It provides total scores for each specific personality domains. It has strong psychometric properties with Cronbach’s alpha of 0.82 for Neuroticism, 0.78 for Extraversion, 0.85 for Conscientiousness, 0.71 for Agreeableness and 0.56 for
Openness.82 The Neuroticism scale assesses an individual’s proneness to experience negative affect. The Extraversion scale assesses individual’s propensity to seek out social interactions and activities. The Openness scale assesses the degree to which an individual seeks out new
experiences and enjoys exploring the unfamiliar. The Agreeableness scale assesses the individual’s degree to think tactfully and behave in a way that is characterized as friendly, considerate and generous. The Conscientiousness scale assesses the degree to which an individual is persistent, organized and goal-oriented. It has been previously used in research involving spouses and family members of chronically ill patients.34,36,37,39,43 It has good psychometric properties and corresponds well with the longer version i.e., BFI.82
Demographic and caregiving information: Information was collected on following socio-demographic and caregiving characteristics: (1) age, (2) race/ethnicity, (3) sex of the caregiver, (4) sex of the care recipient, (5) marital status, (6) occupational status, (7) education status, (8) relationship to care recipient, (9) year caregiving started, and (10) number of hours per week spent in caregiving.