Helping families thrive in the face of uncertainty: Strengths based approaches to working with families affected by progressive neurological illness

Abstract

Background: Management of the uncertainty inherent in a diagnosis of a progressive neurological illness is one of the major adjustment tasks facing those affected and their families. A causal relationship has been demonstrated between perceived illness uncertainty and negative psychological outcomes for individuals with progressive neurological illness. Whilst there is a small and promising intervention literature on the use of a range of individually focused strengths based psychological interventions there appears to be little guidance available how clinicians might help those family members of those affected.

Objective: To undertake a systematic review of the evidence on the use of strengths based, family focused interventions that target illness uncertainty.

Methods: A systematic literature search was undertaken using the National Library for Health abstract database.

Results: Five papers were included in the review, only two of which were published in peer reviewed journals. All five reported on strengths based approaches that could be used with families but only two explicitly identified illness uncertainty as a target. Outcome measures were heterogeneous so data could not be aggregated for meta-analysis. The results suggested that these interventions showed promised but the review highlighted a number of methodological issues which mean that the results must be interpreted with caution.

Conclusions: There is very little evidence of the use of strengths based approaches to helping families manage the uncertainty associated with progressive neurological illness despite it having been identified as a key target for intervention. The review highlights the need for the development of an intervention framework to address this key clinical issue and suggests one model that might show promise.

Keywords: Huntington’s disease; Motor Neurone Disease; Multiple Sclerosis; Parkinson’s disease; Progressive neurological illness; children; family; illness uncertainty; psychological therapy; resilience; strengths based approaches.