Breathlessness is a distressing and disabling symptom of advanced disease, that is frequently present in advanced cancer and cardiorespiratory disease. It is difficult and frightening for patients, and their carers often experience anxiety and emotional distress, partly related to a lack of support and knowledge about how best to help.
As part of a program of work to develop an evidence-based educational intervention for lay carers on the symptom of breathlessness in advanced disease, Morag Farquhar and colleagues explored educational interventions for carers of patients with advanced or chronic disease in a literature review published in JPSM.
Most interventions had been developed for carers of patients with cancer, and most took the form of group interventions delivered over two to three sessions in a clinical setting by clinical staff, with sessions averaging around 90 minutes and supported with additional resources. Stand-alone resources were rare.
Several key factors emerged as important for those developing personnel-delivered interventions for carers in advanced disease. They included consideration of the trajectory of the disease, and, therefore, of the caring pathway; the accessibility of the intervention for carers (timing, location, and transport) and the availability of respite provision to improve access to the intervention.
But evaluations were few, especially in the UK, and published evaluations rarely reported reasons for non-participation or drop-out from interventions, which limited understanding of the contribution of these elements to interventions’ effectiveness.
Published evaluations of educational interventions for carers in advanced disease are limited, particularly for non-cancer conditions – we need more interventions for carers of patients living with non-cancer conditions, but we need to ask carers what will work for them in order to design interventions to meet their needs
– Dr Morag Farquhar
Farquhar M, Penfold C, Walter F, Kuhn I, Benson J. ‘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 & Symptom Management 2016;52(1):117-30.
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