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

Morag Farquhar, Clarissa Penfold, Fiona M. Walter, Isla Kuhn, John Benson

Research output: Contribution to journalArticlepeer-review

10 Citations (Scopus)
12 Downloads (Pure)

Abstract

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 focused 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 performed a narrative analysis.

Results: We included 62 articles related to 49 interventions. Two main delivery modes were identified: personnel-delivered interventions and stand-alone resources. Personnel-delivered interventions targeted individuals or groups, the former conducted at single or multiple time points, and the latter delivered as series. Just more than half targeted carers rather than patient-carer dyads. Most were developed for cancer; few focused purely on symptom management. Stand-alone resources were rare. Methods to evaluate interventions ranged from postintervention evaluations to fully powered randomized 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 dropout 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.
Original languageEnglish
Pages (from-to)117–130.e27
Number of pages14
JournalJournal of Pain and Symptom Management
Volume52
Issue number1
Early online date23 Apr 2016
DOIs
Publication statusPublished - Jul 2016

Keywords

  • Informal carers
  • education
  • intervention
  • symptom management
  • advanced disease
  • narrative review

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