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

Objectives Life story work 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 outcomes is poorly developed, making the choice of evaluation methods and appropriate outcomes difficult. This article uses a systematic review to uncover theories of change and outcomes for life story work in dementia care. We describe the methods and their use in identifying appropriate outcomes for evaluative research, and their potential for improving evaluation of ‘theory poor’ interventions. Methods A systematic review, carried out using Centre for Reviews and Dissemination guidelines, searched for evidence on underlying theory, good practice, and effectiveness of life story work to inform a feasibility study for the formal evaluation of life story work in dementia care. For the theory element, a ‘landscaping review’ analysed the extracted text, using qualitative techniques and mind maps to uncover both explicit and implicit causal links between life story work and outcomes. We triangulated the review findings with qualitative research, which used focus groups with people with dementia, caregivers, and professionals that explored the outcomes that they would like to see from life story work. Results Of 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 life story work via a causal pathway were elicited. There was substantial overlap in the outcomes identified by the review and by carers, people with dementia, and professionals. Together, the results informed our choice of outcome measures for the pilot evaluation. Conclusions This approach may enable researchers to identify and develop the theory necessary before evaluation of a complex intervention in other under- or un-theorized areas. It has the potential both to shorten development stages (and thereby costs) in intervention research and improve the intervention itself.

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Improving care for people with dementia: development and initial feasibility study for evaluation of life story work in dementia care

Health Services and Delivery Research ◽

10.3310/hsdr04230 ◽

2016 ◽

Vol 4 (23) ◽

pp. 1-298 ◽

Cited By ~ 17

Author(s):

Kate Gridley ◽

Jenni Brooks ◽

Yvonne Birks ◽

Kate Baxter ◽

Gillian Parker

Keyword(s):

Feasibility Study ◽

Best Practice ◽

Social Care ◽

Life Story ◽

Good Practice ◽

Dementia Care ◽

Care Staff ◽

Care Homes ◽

Staff Attitudes ◽

People With Dementia

BackgroundImproving dementia care quality is an urgent priority nationally and internationally. Life story work (LSW) is an intervention that aims to improve individual outcomes and care for people with dementia and their carers. LSW gathers information and artefacts about the person, their history and interests, and produces a tangible output: the ‘life story’.ObjectiveTo establish whether or not full evaluation of LSW was feasible.DesignMixed-methods feasibility study.MethodsIn-depth interviews and focus groups explored experiences of LSW and best practice with people with dementia, family members and dementia care staff. A systematic review explored best practice and theories of change for LSW. These stages helped to identify the outcomes and resources to explore in the feasibility study. A representative sample survey of health and social care dementia care providers in England established LSW practice in different settings. A survey of a self-selected sample of family members of people with dementia explored how LSW is experienced. Two small outcome studies (stepped-wedge study in six care homes and pre-test post-test study in inpatient specialist dementia care wards) explored the feasibility of full evaluation of LSW in these settings.SettingsSurvey: generalist and specialist care homes; NHS dementia care settings; and community dementia services. Feasibility study: care homes and NHS inpatient dementia care wards.ParticipantsNHS and social care services, people with dementia, family carers, care home staff and NHS staff.InterventionsLSW.Main outcome measuresSpread of LSW and good practice, quality of life (QoL) for the person with dementia and carers, relationships between people with dementia and family carers, staff attitudes about dementia, staff burnout, resource use and costs.Review methodsNarrative review and synthesis, following Centre for Review and Dissemination guidelines.ResultsGood practice in LSW is identifiable, as are theories of change about how it might affect given outcomes. Indicators of best practice were produced. LSW is spreading but practice and use vary between care settings and are not always in line with identified good practice. Two different models of LSW are evident; these are likely to be appropriate at different stages of the dementia journey. The feasibility study showed some positive changes in staff attitudes towards dementia and, for some people with dementia, improvements in QoL. These may be attributable to LSW but these potential benefits require full evaluation. The feasibility work established the likely costs of LSW and highlighted the challenges of future evaluation in care homes and inpatient dementia care settings.LimitationsThere was insufficient evidence in the literature to allow estimation of outcome size. We did not carry out planned Markov chain modelling to inform decisions about carrying out future evaluation because of the dearth of outcome data in the literature; low levels of data return for people with dementia in the hospital settings; lack of detected effect for most people with dementia; and questions about implementation in the research settings.ConclusionsLSW is used across different health and social care settings in England, but in different ways, not all of which reflect ‘good practice’. This large, complex study identified a wide range of challenges for future research, but also the possibility that LSW may help to improve care staff attitudes towards dementia and QoL for some people with dementia.Future workFull evaluation of LSW as an intervention to improve staff attitudes and care is feasible with researchers based in or very close to care settings to ensure high-quality data collection.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

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Life story resources in dementia care: a review

Quality in Ageing and Older Adults ◽

10.1108/qaoa-02-2014-0003 ◽

2014 ◽

Vol 15 (3) ◽

pp. 151-161 ◽

Cited By ~ 17

Author(s):

Jacqueline Kindell ◽

Simon Burrow ◽

Ray Wilkinson ◽

John David Keady

Keyword(s):

Life Story ◽

Dementia Care ◽

Future Directions ◽

Content Type ◽

Informal Activity ◽

People With Dementia ◽

Health And Social Care ◽

Story Work ◽

Staff Intervention ◽

Person With Dementia

Purpose – Life story work has a relatively long tradition in the caring sciences and is recognised as an important component of dementia care and practice. However, to date, there has not been a review of accessible life story resources. The paper aims to discuss these issues. Design/methodology/approach – Following a systematic approach to identification and inclusion, 11 life story resources were reviewed to ascertain areas of commonality and divergence between the materials. Findings – The authors were able to group the analysis under eight areas and at the end of this process, it was uncertain if life story work is a formal staff intervention or an informal activity that people with dementia and their families could engage in. Resources also varied in terms of whether the life story information was organised in a chronological way, or with topics of interest/discussion or with a combination of both. Life story evaluation and its impact on the life of the person with dementia is in need of development. Practical implications – Across the resources the authors identified four reasons to do life story work which the authors have named as: emotional connections; interactional connections; building new connections and practical care connections. Social implications – There was limited guidance aimed at helping people with dementia to develop and compile their own life story. Originality/value – This paper provides new insights into the usefulness, future directions and content of life story resources in dementia care. It will be of interest to those in health and social care as well as people living with dementia.

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Exploring good practice in life story work with people with dementia: The findings of a qualitative study looking at the multiple views of stakeholders

Dementia ◽

10.1177/1471301218768921 ◽

2018 ◽

Vol 19 (2) ◽

pp. 182-194 ◽

Cited By ~ 1

Author(s):

Kate Gridley ◽

Yvonne Birks ◽

Gillian Parker

Keyword(s):

Focus Groups ◽

Life Story ◽

Good Practice ◽

Family Carers ◽

People With Dementia ◽

Practice Approach ◽

Story Work ◽

The Individual ◽

Person With Dementia ◽

Design And Methods

Introduction Despite growing international interest in life story work as a tool for person-centred dementia care, there is little agreement on what constitutes good practice and little evidence from the perspectives of people with dementia or their family carers. Design and methods This paper reports the findings from the qualitative element of a larger study looking at the feasibility of evaluating life story work. Ten focus groups were held with 73 participants: four groups of people with dementia (25 participants); three with family carers (21 participants); and three with staff, professionals and volunteers with experience of life story work (27 participants). Findings: It became apparent through our focus groups that, when people talk about ‘life story work’, different people mean different things. This related to both process and outcomes. In particular, a person with dementia may have very different views from others about what life story work is for and how their life story products should be used. There was general agreement that a good practice approach would be tailored to the individual needs and preferences of the person with dementia. However, in practice many settings used templates and the process was led by staff or completed by family carers. Conclusion We produced nine key features of good practice which could be used to guide the life story work process. Key elements include the recognition that not everyone will want to take part in life story work and that some people may even find it distressing; the importance of being led by the person with dementia themselves; the need for training and support for staff, carers and volunteers; and the potential for life story work to celebrate the person’s life today and look to the future.

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The impact of life story work on person-centred care for people with dementia living in long-stay care settings in Ireland

Dementia ◽

10.1177/1471301218756123 ◽

2018 ◽

Vol 18 (7-8) ◽

pp. 2731-2746 ◽

Cited By ~ 2

Author(s):

Adeline Cooney ◽

Eamon O’Shea

Keyword(s):

Registered Nurses ◽

Healthcare Professionals ◽

Life Story ◽

Dementia Care ◽

People With Dementia ◽

Constant Comparative ◽

Story Work ◽

Person With Dementia ◽

The Impact ◽

Depth Interviews

The potential of life story work to add quality to dementia care is widely acknowledged. Whether this potential is always realised in practice and under what circumstances is less clear. This paper explores whether knowing the person’s life story enhances healthcare professionals’ understanding of the person with dementia and whether this understanding impacts on the person’s care. In-depth interviews were conducted with 11 registered nurses and 12 healthcare assistants who had used life story work with people with dementia living in long-stay care settings. Data were analysed using the constant comparative technique. Engaging in life story work enabled staff to see the person behind the dementia. Understanding (as opposed to knowing) the person with dementia’s life story changed staff’s thinking on what is important when delivering care to people with dementia, with staff giving concrete examples of changes in how they delivered care to the person with dementia and what they considered important when delivering that care. It was concluded that life story work can facilitate a shift to person centred dementia care but how it is implemented matters if this outcome is to be achieved.

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Barriers and facilitators to the access to and use of formal dementia care: findings of a focus group study with people with dementia, informal carers and health and social care professionals in eight European countries

BMC Geriatrics ◽

10.1186/s12877-018-0816-1 ◽

2018 ◽

Vol 18 (1) ◽

Cited By ~ 46

Author(s):

Astrid Stephan ◽

◽

Anja Bieber ◽

Louise Hopper ◽

Rachael Joyce ◽

...

Keyword(s):

Focus Group ◽

Social Care ◽

Dementia Care ◽

European Countries ◽

Barriers And Facilitators ◽

Focus Group Study ◽

People With Dementia ◽

Health And Social Care ◽

Informal Carers

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Systematic Review Investigating Multi-disciplinary Team Approaches to Screening and Early Diagnosis of Dementia in Primary Care – What are the Positive and Negative Effects and Who Should Deliver It?

Current Alzheimer Research ◽

10.2174/1567205014666170908094931 ◽

2017 ◽

Vol 15 (1) ◽

pp. 5-17 ◽

Cited By ~ 2

Author(s):

Toby Smith ◽

Jane Cross ◽

Fiona Poland ◽

Felix Clay ◽

Abbey Brookes ◽

...

Keyword(s):

Systematic Review ◽

Primary Care ◽

Early Diagnosis ◽

Service Providers ◽

Care Practice ◽

Initial Contact ◽

Negative Effects ◽

People With Dementia ◽

Health And Social Care ◽

Early Diagnostic

Background: Primary care services frequently provide the initial contact between people with dementia and health service providers. Early diagnosis and screening programmes have been suggested as a possible strategy to improve the identification of such individuals and treatment and planning health and social care support. Objective: To determine what early diagnostic and screening programmes have been adopted in primary care practice, to explore who should deliver these and to determine the possible positive and negative effects of an early diagnostic and screening programme for people with dementia in primary care. Methods: A systematic review of the literature was undertaken using published and unpublished research databases. All papers answering our research objectives were included. A narrative analysis of the literature was undertaken, with the CASP tools used appropriately to assess study quality. Results: Thirty-three papers were identified of moderate to high quality. The limited therapeutic options for those diagnosed with dementia means that even if such a programme was instigated, the clinical value remains questionable. Furthermore, accuracy of the diagnosis remains difficult to assess due to poor evidence and this raises questions regarding whether people could be over- or under-diagnosed. Given the negative social and psychological consequences of such a diagnosis, this could be devastating for individuals. Conclusion: Early diagnostic and screening programmes have not been widely adopted into primary care. Until there is rigorous evidence assessing the clinical and cost-effectiveness of such programmes, there remains insufficient evidence to support the adoption of these programmes in practice.

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Person- and relationship-centred dementia care

Oxford Textbook of Old Age Psychiatry ◽

10.1093/med/9780198807292.003.0015 ◽

2020 ◽

pp. 233-248

Author(s):

John Keady ◽

Mike Nolan

Keyword(s):

Life Story ◽

Care Home ◽

Theoretical Development ◽

People With Dementia ◽

Global Issue ◽

Diagnosis Of Dementia ◽

Working Together ◽

The Senses ◽

Story Work ◽

Person With Dementia

Dementia is a global issue experienced on an individual and relational level. This chapter traces the emergence of both person-centred care and relationship-centred care, with the latter approach expressed through the Senses Framework. The Framework outlines the theoretical development and practical application of the Senses [security, belonging, continuity, purpose, achievement, significance] and highlights the importance of staff, carer, and [in this chapter] person with dementia all working together. This chapter describes the application of the Senses Framework to a recent practice development study set in a care home for people with dementia and shows how the study used a combination of the Senses and life story work to create an ‘enriched’ environment. The chapter concludes with a discussion about how the Senses can be used to facilitate an early diagnosis of dementia and to help people with dementia and their families to engage with a life ‘outside the front door’, termed ‘The Neighbourhood Space’.

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