Caregiver Burden
Conditions
Interventions
A two-arm randomized controlled trial comparing the effects of online support programmer with a control group. 390 participants will be recruited. Data are collected online using self-administered ins
Sponsors
Departamento de Gerontologia da Universidade Federal de São Carlos
Universidade de Brasília
Eligibility
Age
18 Years to 100 Years
Inclusion criteria
Inclusion criteria: Be aged 18 years or older; report that they are a family caregiver of a person with dementia; providing non-paid care for at least 6 months at the time of the recruitment; caring for a person holding a diagnosis of dementia; have access to a smartphone, computer or tablet with internet
Exclusion criteria
Exclusion criteria: Unable to comprehend written Brazilian Portuguese; not having access to a device with internet connection
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Burden: Assessing subjective burden through the single-item Burden Scale, in which caregivers can respond with values between 1 and 10. These values indicate the level of stress due to the caregiving experience, with 1 representing “non-stressful” and 10 representing “extremely stressful”. For inclusion in the study, the caregiver's needs either a score of 4 or higher in the Burden Scale or meet the criteria for inclusion in the assessments of anxiety and depressive symptoms. It is expected to reduce the caregivers' perception of burden, assessed by the Zarit Burden Inventory (ZBI) in its 22 items version. ZBI measures the emotional, social and financial impact of caring for someone. Each item will be scored on a 5-point Likert scale from 0 (never) to 4 (almost always). Total score ranges from zero to 88, with higher scores indicating greater perceived burden. The ZBI has high internal consistency, shown by national studies with caregivers, as a = 0.87 (Scazufca), a = 0.88 (Ferraresi et al., 2019) and a 0.85 (Bianchi et al., 2016) . The ZBI total score will be used to verify whether the outcome occurred, by observing the possible reduction for perception of burden in the measurements pre and post-intervention, as well as on follow-up. ;Depressive Symptoms: For the assessment of depressive symptoms the Center for Epidemiological Studies 10-item Depression Scale (CES-D 10) will be used. Participants will rate the frequency of symptoms during the past week. Its score ranges from zero (never or rarely) to 3 (always). The total score ranges from zero (no depression) to 60 (very depressed), with the cut-off point for identifying probable cases of depression of >12 points. The CES-D has a high index of internal consistency (a=0.86) and a factorial solution of 3 factors that explained 47.5% of the total variability of the data (1- negative affection; 2- difficulty in initiating behaviors; 3- positive affection) (Batistoni et al., 2007). CES-D total score will be used to v | — |
Secondary
| Measure | Time frame |
|---|---|
| Positive aspects: The Positive Care Aspects Scale (PCA) will be used to assess the positive aspects of a caregiver's mental or affective state in the context of the care experience. It consists of 9 items, answered on a 5-point scale, with a total score ranging from 9 to 45 points. Higher scores represent more positive evaluations. It has a high internal consistency index a=0.89 (Tarlow et al., 2004). The PCA total score will be used in pre, post and follow-up measurements to verify if the outcome occurred. In addition, the assessment of positive aspect interaction in the caregiving experience will be measured by the Dyad Relationship Scale – caregiver version (items of the positive interaction subscale) (ERCD). The scale is consisted of 11 statements about the quality of the relationship between the members of the dyad and the transformations resulting from the care situation. For each statement, there are four response options: strongly disagree (1 point), disagree (2 points), agree (3 points) or strongly agree (4 points). The ERDC is composed of two subscales: one that measures “Positive Interaction” and the other that measures “Conflicts” between the members of the caregiver-elderly dyad. The higher the score on the two subscales, the greater the degree of positive interaction (Subscale 1) or conflict (Subscale 2). For this study, only the subscale that measures positive interaction will be used. The ECRD will be used to verify if the outcome really occurred, with an increase in the more positive evaluations, through the score of the positive interaction subscale, in the pre- and post-intervention and follow-up measurements.;Problematic behaviors: To measure observable behavioral and memory problems in people living with dementia and the reaction of their caregivers to these problems, the Revised Memory and Behavior Problems Checklist (RMBPC) instrument will be used. It has 24 items and scores are calculated in two steps: first, for the presence or absence of | — |
Countries
Brazil
Contacts
Public Contactisupport cuidadores
Departamento de Gerontologia da Universidade Federal de São Carlos
Outcome results
None listed