What are the key elements of educational interventions for lay carers of patients with advanced disease? A systematic literature search and narrative review of structural components, processes and modes of delivery
Benson, John Arthur
Key elements carers educational interventions
Journal of Pain and Symptom Management
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Farquhar, M. C., Penfold, C., Walter, F. M., Kuhn, I., & Benson, J. A. (2016). What are the key elements of educational interventions for lay carers of patients with advanced disease? A systematic literature search and narrative review of structural components, processes and modes of delivery. Journal of Pain and Symptom Management
Context: Educating carers about symptom management may help meet patient and carer needs in relation to distressing symptoms in advanced disease. Reviews of the effectiveness of carer interventions exist but few have focussed on educational interventions, and none on the key elements that comprise them but which could inform evidence-based design. Objectives: To identify the key elements (structural components, processes and delivery-modes) of educational interventions for carers of patients with advanced disease. Methods: We systematically searched seven databases, applied inclusion and exclusion criteria, conducted quality appraisal, extracted data, and a narrative analysis. Results: 62 included papers related to 49 interventions. Two main delivery-modes were identified: personnel-delivered interventions and standalone resources. Personnel-delivered interventions targeted individuals or groups: the former conducted at single or multiple time-points, the latter delivered as series. Just over half targeted carers rather than patientcarer dyads. Most were developed for cancer; few focussed purely on symptom management. Standalone resources were rare. Methods to evaluate interventions ranged from post-intervention evaluations to fully-powered randomised controlled trials, but of variable quality. Conclusion: Published evaluations of educational interventions for carers in advanced disease are limited, particularly for non-cancer conditions. Key elements for consideration in developing such interventions were identified, however lack of reporting of reasons for nonparticipation or drop-out from interventions limits understanding of the contribution of these elements to interventions’ effectiveness. When developing personnel-delivered interventions for carers in advanced disease consideration of the disease (and therefore caring) trajectory, intervention accessibility (timing, location and transport) and respite provision may be helpful.
Informal carers, education, intervention, symptom management, advanced disease, narrative review
Macmillan Cancer Support for Post-Doctoral Fellowship funding for MF and the review consumables. CP’s work was part-funded by NIHR CLAHRC East of England. FMW’s work was undertaken during her NIHR Clinical Lectureship then NIHR Clinician Scientist award.
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