Using a systematic review to uncover theory and outcomes for a complex intervention in health and social care: Life Story Work for people with dementia as a worked example

TY - JOUR

T1 - Using a systematic review to uncover theory and outcomes for a complex intervention in health and social care

T2 - Life Story Work for people with dementia as a worked example

AU - Parker, Gillian Mary

AU - Gridley, Kate

AU - Birks, Yvonne Frances

AU - Glanville, Julie

N1 - Parker G, Gridley K, Birks Y, Glanville J. Using a systematic review to uncover theory and outcomes for a complex intervention in health and social care: a worked example using life story work for people with dementia. Journal of Health Services Research & Policy. 2020;25(4):265-277. doi:10.1177/1355819619897091

PY - 2020/10/1

Y1 - 2020/10/1

N2 - Objectives: To use a systematic review to uncover theories of change and outcomes for Life Story Work (LSW) in dementia care to inform a feasibility study. We describe the methods and discuss their use in identifying appropriate outcomes for evaluative research, and their potential for improving evaluation of ‘theory poor’ interventions. Life Story Work (LSW) involves gathering information about a person, their history and interests and producing a tangible output, usually a book. It is used increasingly in dementia care; however, theory about if, how and why it affects which outcomes is poorly developed, making the choice of evaluation methods and appropriate outcomes difficult.MethodsA systematic review, carried out using Centre for Reviews and Dissemination guidelines, searched for evidence on underlying theory, good practice, and effectiveness of LSW to inform a feasibility study. For the theory element, a ‘landscaping review’ analysed the extracted text, using qualitative techniques and mind maps to uncover both explicit and implicit links (causal routes) between LSW and outcomes. We triangulated review findings with qualitative research (focus groups) with people with dementia, caregivers, and professionals that explored the outcomes that they would like to see from LSW.ResultsOf the 56 publications reviewed, only 16 were useful for the theory analysis. Six overarching outcomes were identified: the self-worth and empowerment of people with dementia; individual psychological outcomes; improved relationships between care staff and the individual with dementia; better care; more effective engagement of family members/carers within the care setting; and helping carers to cope. Twelve final theories linking these outcomes to LSW via a causal pathway were elicited. There was substantial overlap in theoutcomes identified by the review and by carers, people with dementiaand professionals. Together, the results informed our choice of outcome measures for a pilotevaluation.ConclusionsThis approach may enable researchers to identify and develop the theory necessary before evaluation of a complex intervention in other under- or un- theorised areas. It has the potential both to shorten development stages (and thereby costs) in intervention research and improve the intervention itself.

AB - Objectives: To use a systematic review to uncover theories of change and outcomes for Life Story Work (LSW) in dementia care to inform a feasibility study. We describe the methods and discuss their use in identifying appropriate outcomes for evaluative research, and their potential for improving evaluation of ‘theory poor’ interventions. Life Story Work (LSW) involves gathering information about a person, their history and interests and producing a tangible output, usually a book. It is used increasingly in dementia care; however, theory about if, how and why it affects which outcomes is poorly developed, making the choice of evaluation methods and appropriate outcomes difficult.MethodsA systematic review, carried out using Centre for Reviews and Dissemination guidelines, searched for evidence on underlying theory, good practice, and effectiveness of LSW to inform a feasibility study. For the theory element, a ‘landscaping review’ analysed the extracted text, using qualitative techniques and mind maps to uncover both explicit and implicit links (causal routes) between LSW and outcomes. We triangulated review findings with qualitative research (focus groups) with people with dementia, caregivers, and professionals that explored the outcomes that they would like to see from LSW.ResultsOf the 56 publications reviewed, only 16 were useful for the theory analysis. Six overarching outcomes were identified: the self-worth and empowerment of people with dementia; individual psychological outcomes; improved relationships between care staff and the individual with dementia; better care; more effective engagement of family members/carers within the care setting; and helping carers to cope. Twelve final theories linking these outcomes to LSW via a causal pathway were elicited. There was substantial overlap in theoutcomes identified by the review and by carers, people with dementiaand professionals. Together, the results informed our choice of outcome measures for a pilotevaluation.ConclusionsThis approach may enable researchers to identify and develop the theory necessary before evaluation of a complex intervention in other under- or un- theorised areas. It has the potential both to shorten development stages (and thereby costs) in intervention research and improve the intervention itself.

KW - Life story work

KW - Systematic reviews

U2 - 10.1177/1355819619897091

DO - 10.1177/1355819619897091

M3 - Article

SN - 1355-8196

VL - 25

SP - 265

EP - 277

JO - Journal of Health Services Research & Policy

JF - Journal of Health Services Research & Policy

IS - 4

ER -