Discussion
stroke, ’ QoL deficits
STROKE
This RCT study focuses on the effects of a tailored educational intervention among family caregivers of Brazilian aged stroke survivors. One year after the stroke survivors had been discharged from SCU-Stroke, statistically significant differences were observed in the family caregivers’ Quality of Life. Our most poignant finding was that the Social Relationships and Autonomy scores consistently favored caregivers who In a German RCTOthersIn a training program in Portugal called InCARE, the caregivers that received guidance on care activities for three months after discharge through HVs and telephone calls reported borderline statistically significantly higher mental QoL levels (p=.050)Although the SHARE intervention exerted significant positive effects on the Social Relationships in the IG Our findings reinforce the positive effect of providing emotional support for family caregivers related to maintaining their own personal activities, self-care and decision-making. During the HVs with the IG, the INs placed great emphasis on sharing caregiving responsibilities with other family members, paying attention to one’s own physical and mental health, and reserving time for oneself and for leisure activities.Delivery of the SHARE intervention was associated with significant differences in Social Relationships and Autonomy, which favored the IG. In Brazil, transitional care programs need the participation of health professionals, aged people and family caregivers to carry out discharge and care planning for a successful hospital-home transitionCohortThe Brazilian Home Care Policy currently recommends an initial HV within seven to 30 days for patients requiring higher levels of care needs due to, for example, having experienced a strokeAnother proven important aspect of the SHARE intervention lies in the instability of the CG scores in nearly all the WHOQOL-BREF domains. The scores in the CG were higher at baseline and dropped over time, generally presenting higher variability. The scores in the IG, while lower at baseline, were more stable over time. This may have been partly due to the support and guidance provided by SHARE nurses who presumably had a better anticipatory understanding of what caregiving entails for aged stroke survivors. All caregivers in this study were providing support to first-time stroke survivors.This RCT has some limitations. First and foremost, the caregivers were recruited from a single Brazilian region with unique social and economic circumstances. It is unfortunate that we had no socioeconomic data pertaining to household characteristics. The caregivers were also working with health professionals with highly specialized knowledge about stroke survivor care. Only answering “what works” without empirical attention to household characteristics does not shed light on the everyday caregiving context. Our findings cannot be generalized beyond the caregivers included in this study. The quantitative research questions draw the attention to a specific population segment (family caregivers) and to a specific living environment (own home) but cannot aptly speak to diversity in the caregivers’ everyday living circumstancesIn a future study, more inclusive sampling among survivors discharged from non-specialized institutions across multiple geographic regions is warranted. We also most certainly need to interview caregivers about their everyday socioeconomic and environmental constraints.Doing so is likely to shed greater light on our Overall QoL findings, with these favoring the IG in our comparisons between month 2 and year 1 scores. When conducting RCTs, using mixed methods is a means to expand what can be learned from an intervention research study. The participants’ voices need to be heard and their shared experiences need to be drawn upon to better understand effectiveness of the intervention. It is necessary to go beyond answering whether an intervention works, to answering how and under what circumstances the results are achievedIt is also worth noting that the way in which QoL is measured in published intervention studies varies considerably across countries. We lacked points of comparison for changes in the WHOQOL-BREF scores over time. Our somewhat pallid internal consistency coefficients for its Psychological and Social Relationships domains are cases-in-point. Nonetheless, it is our position that what we have learned about the power of educational support to effect positive changes in caregivers’ QoL deficits far outweighs these shortcomings. We hope that the findings of this study spurs researchers on to adopt WHOQOL-BREF in future intervention studies so that all such comparisons can be readily made.