Can Survey-based Scenarios Measure Consumer Values for Improved Food Safety?

Demand and Price Analysis, Food Consumption/Nutrition/Food Safety,

Flourishing ‘older-old’ (80+) adults: Personal projects and their enabling places

This paper sets out a framework for exploring flourishing in older age through the lens of what older adults are doing in their lives. Applying a model from positive psychology called personal project analysis (PPA) our study captures a snapshot of older people's goals and their environmental context. Targeting older people aged 80+ we applied PPA methods in a semi-structured interview to elicit participants’ personal projects which were scored on eight wellbeing dimensions (e.g., fun, stress). Qualitative data analysis identified what types of personal projects are employed by this older demographic and the environments in which they are carried out. Results showed our participants were vitally engaged in a wide spectrum of projects exercised in a range of ‘enabling places’ which we categorised as (1) restorative niches (places that afford psychological restoration) such as nature settings (e.g. a garden, local park or riverside); (2) affinity niches (places that afford social opportunities) such as religious venues, social clubs, or cafés; and (3) flow niches (places that afford immersion in mental or physical tasks) such as the home (e.g. the kitchen) or a place associated with a previous career or amateur sport (e.g. cricket club). Our findings are discussed in relation to older people's wellbeing and the role of the built environment. Despite the increasingly negative stereotyping of the ‘older-old’ our study shows that the final decades of life can be a period of continuing growth and learning, a life stage with its own distinct character, rather than a period of decline

A discrete choice experiment to explore carer preferences. Quality in Ageing and Older Adults.

© Emerald Publishing Limited. Purpose - The purpose of this paper is to describe a case study to test the applicability of the discrete choice experiment (DCE) method to assess the preferences of carers of people with dementia. The focus of enquiry was home care provision. Design/methodology/approach - A multi-method approach was adopted for this pilot study. A literature review identified key characteristics of home care for dementia. This informed consultations with lay representatives. Key attributes of home care for the DCE were identified and formed the basis for the schedule. In all, 28 carers were recruited by two voluntary organisations to complete the DCE. A multinomial logistic regression model was used to analyse the data. Findings - Seven attributes of home care for people with dementia were identified from the consultation. The use of the DCE approach permitted the identification of those most important to carers. Despite the modest sample, statistically significant findings were reported in relation to five of the attributes indicating their relevance. A lay involvement in the identification of attributes contributed to the ease of administration of the schedule and relevance of the findings. Originality/value - This study demonstrated the utility of a DCE to capture the preferences of carers of people with dementia and thereby gather information from carers to inform policy, practice and service development. Their involvement in the design of the schedule was critical to this process

The mechanisms and processes of connection: developing a causal chain model capturing impacts of receiving recorded mental health recovery narratives.

BACKGROUND: Mental health recovery narratives are a core component of recovery-oriented interventions such as peer support and anti-stigma campaigns. A substantial number of recorded recovery narratives are now publicly available online in different modalities and in published books. Whilst the benefits of telling one's story have been investigated, much less is known about how recorded narratives of differing modalities impact on recipients. A previous qualitative study identified connection to the narrator and/or to events in the narrative to be a core mechanism of change. The factors that influence how individuals connect with a recorded narrative are unknown. The aim of the current study was to characterise the immediate effects of receiving recovery narratives presented in a range of modalities (text, video and audio), by establishing the mechanisms of connection and the processes by which connection leads to outcomes. METHOD: A study involving 40 mental health service users in England was conducted. Participants were presented with up to 10 randomly-selected recovery narratives and were interviewed on the immediate impact of each narrative. Thematic analysis was used to identify the mechanisms of connection and how connection leads to outcome. RESULTS: Receiving a recovery narrative led participants to reflect upon their own experiences or those of others, which then led to connection through three mechanisms: comparing oneself with the narrative and narrator; learning about other's experiences; and experiencing empathy. These mechanisms led to outcomes through three processes: the identification of change (through attending to narrative structure); the interpretation of change (through attending to narrative content); and the internalisation of interpretations. CONCLUSIONS: This is the first study to identify mechanisms and processes of connection with recorded recovery narratives. The empirically-based causal chain model developed in this study describes the immediate effects on recipients. This model can inform selection of narratives for use in interventions, and be used to support peer support workers in recounting their own recovery narratives in ways which are maximally beneficial to others

The impact of mental health recovery narratives on recipients experiencing mental health problems: Qualitative analysis and change model.

BACKGROUND: Mental health recovery narratives are stories of recovery from mental health problems. Narratives may impact in helpful and harmful ways on those who receive them. The objective of this paper is to develop a change model identifying the range of possible impacts and how they occur. METHOD: Semi-structured interviews were conducted with adults with experience of mental health problems and recovery (n = 77). Participants were asked to share a mental health recovery narrative and to describe the impact of other people's recovery narratives on their own recovery. A change model was generated through iterative thematic analysis of transcripts. RESULTS: Change is initiated when a recipient develops a connection to a narrator or to the events descripted in their narrative. Change is mediated by the recipient recognising experiences shared with the narrator, noticing the achievements or difficulties of the narrator, learning how recovery happens, or experiencing emotional release. Helpful outcomes of receiving recovery narratives are connectedness, validation, hope, empowerment, appreciation, reference shift and stigma reduction. Harmful outcomes are a sense of inadequacy, disconnection, pessimism and burden. Impact is positively moderated by the perceived authenticity of the narrative, and can be reduced if the recipient is experiencing a crisis. CONCLUSIONS: Interventions that incorporate the use of recovery narratives, such as peer support, anti-stigma campaigns and bibliotherapy, can use the change model to maximise benefit and minimise harms from narratives. Interventions should incorporate a diverse range of narratives available through different mediums to enable a range of recipients to connect with and benefit from this material. Service providers using recovery narratives should preserve authenticity so as to maximise impact, for example by avoiding excessive editing

Components, impacts and costs of dementia home support: a research programme including the DESCANT RCT

BackgroundOver half of people with dementia live at home. We know little about what home support could be clinically effective or cost-effective in enabling them to live well.ObjectivesWe aimed to (1) review evidence for components of home support, identify their presence in the literature and in services in England, and develop an appropriate economic model; (2) develop and test a practical memory support package in early-stage dementia, test the clinical effectiveness and cost-effectiveness of routine home support in later-stage dementia and design a toolkit based on this evidence; and (3) elicit the preferences of staff, carers and people with dementia for home support inputs and packages, and evaluate the cost-effectiveness of these approaches in early- and later-stage dementia.DesignWe undertook (1) an evidence synthesis, national surveys on the NHS and social care and an economic review; (2) a multicentre pragmatic randomised trial [Dementia Early Stage Cognitive Aids New Trial (DESCANT)] to estimate the clinical effectiveness and cost-effectiveness of providing memory aids and guidance to people with early-stage dementia (the DESCANT intervention), alongside process evaluation and qualitative analysis, an observational study of existing care packages in later-stage dementia along with qualitative analysis, and toolkit development to summarise this evidence; and (3) consultation with experts, staff and carers to explore the balance between informal and paid home support using case vignettes, discrete choice experiments to explore the preferences of people with dementia and carers between home support packages in early- and later-stage dementia, and cost–utility analysis building on trial and observational study.SettingThe national surveys described Community Mental Health Teams, memory clinics and social care services across England. Recruitment to the trial was through memory services in nine NHS trusts in England and one health board in Wales. Recruitment to the observational study was through social services in 17 local authorities in England. Recruitment for the vignette and preference studies was through memory services, community centres and carers’ organisations.ParticipantsPeople aged > 50 years with dementia within 1 year of first attendance at a memory clinic were eligible for the trial. People aged > 60 years with later-stage dementia within 3 months of a review of care needs were eligible for the observational study. We recruited staff, carers and people with dementia for the vignette and preference studies. All participants had to give written informed consent.Main outcome measuresThe trial and observational study used the Bristol Activities of Daily Living Scale as the primary outcome and also measured quality of life, capability, cognition, general psychological health and carers’ sense of competence.MethodsOwing to the heterogeneity of interventions, methods and outcome measures, our evidence and economic reviews both used narrative synthesis. The main source of economic studies was the NHS Economic Evaluation Database. We analysed the trial and observational study by linear mixed models. We analysed the trial by ‘treatment allocated’ and used propensity scores to minimise confounding in the observational study.ResultsOur reviews and surveys identified several home support approaches of potential benefit. In early-stage dementia, the DESCANT trial had 468 randomised participants (234 intervention participants and 234 control participants), with 347 participants analysed. We found no significant effect at the primary end point of 6 months of the DESCANT intervention on any of several participant outcome measures. The primary outcome was the Bristol Activities of Daily Living Scale, for which scores range from 0 to 60, with higher scores showing greater dependence. After adjustment for differences at baseline, the mean difference was 0.38, slightly but not significantly favouring the comparator group receiving treatment as usual. The 95% confidence interval ran from –0.89 to 1.65 (p = 0.56). There was no evidence that more intensive care packages in later-stage dementia were more effective than basic care. However, formal home care appeared to help keep people at home. Staff recommended informal care that cost 88% of formal care, but for informal carers this ratio was only 62%. People with dementia preferred social and recreational activities, and carers preferred respite care and regular home care. The DESCANT intervention is probably not cost-effective in early-stage dementia, and intensive care packages are probably not cost-effective in later-stage dementia. From the perspective of the third sector, intermediate intensity packages were cheaper but less effective. Certain elements may be driving these results, notably reduced use of carers’ groups.LimitationsOur chosen outcome measures may not reflect subtle outcomes valued by people with dementia.ConclusionsSeveral approaches preferred by people with dementia and their carers have potential. However, memory aids aiming to affect daily living activities in early-stage dementia or intensive packages compared with basic care in later-stage dementia were not clinically effective or cost-effective.Future workFurther work needs to identify what people with dementia and their carers prefer and develop more sensitive outcome measures.Study registrationCurrent Controlled Trials ISRCTN12591717. The evidence synthesis is registered as PROSPERO CRD42014008890.FundingThis project was funded by the National Institute for Health Research (NIHR) Programme Grants for Applied Research programme and will be published in full in Programme Grants for Applied Research; Vol. 9, No. 6. See the NIHR Journals Library website for further project information

Assessing fidelity to complex interventions: the icons experience

Background Assessing fidelity to complex healthcare interventions in clinical trials is a challenging area. ‘ICONS' is a cluster randomised controlled feasibility trial of a systematic voiding programme (SVP), incorporating bladder training and prompted voiding, to promote post-stroke continence. Here we describe feasibility of one aspect of fidelity assessment: the day-to-day implementation of the SVP through analysis of clinical logs. Methods Nurses completed clinical logs daily, which included documenting: the toileting interval, proposed toileting times and times toileted. Clinical logs were sampled across trial sites. The original intention was to assess fidelity by exploring the degree of concordance between proposed times and times toileted. Initial analysis revealed the unfeasibility of this method due to documentation errors in toileting intervals and proposed times. Consequently, the planned method was changed to identification of key ‘quality indicators' (QIs) for documentation of practice. Results The need to revise the method of measurement demonstrates the difficulty in assessing fidelity. Assessment of clinical logs revealed low levels of adherence to key quality indicators. However, it is unclear whether this indicates poor fidelity or an imprecise method of fidelity assessment. Conclusion This study highlights challenges of assessing fidelity to complex interventions. Lessons learned will inform the measurement of fidelity in a future trial. Researchers should be aware that the practical implementation of complex healthcare interventions may not be exactly as intended. For ICONS, clinical logs constituted a proxy measure of day-to-day fidelity to the intervention: identification of alternative methods could be considered

Post-traumatic growth in psychosis: a systematic review and narrative synthesis

Background and objective: People with psychosis report experiences of highly traumatic events. Positive change or post-traumatic growth (PTG) can occur as a result of traumatic experiences. Yet there is limited attention on PTG in psychosis, possibly due to the negative impact of psychotic symptoms on functioning and quality of life. The aim of this review was to identify significant correlates and mediators of PTG in psychosis, and to develop a conceptual framework synthesising facilitators of PTG in psychosis. Method: Ten electronic databases were searched in seven languages, and five journals and grey literature were searched in English. Quantitative studies were eligible if examining correlates, mediators, or the temporal relationship between PTG and one or more variables. Qualitative studies were eligible if describing PTG arising from experiences of psychosis. Findings from quantitative papers were grouped by analysis method, with significant correlates, mediators, and temporal relationships descriptively reported upon. Narrative synthesis was conducted on findings in qualitative papers. Results: Thirty-seven papers were included. Significant correlates and mediators of PTG were identified. Mediators of PTG in psychosis included meaning in life, coping self-efficacy, core beliefs, and self-reported recovery. No studies describing the temporal relationship between PTG and psychosis were identified. The narrative synthesis identified seven facilitators of PTG in psychosis: Personal identity and strength, Receiving support, Opportunities and possibilities, Strategies for coping, Perspective shift, Emotional experience, and Relationships, giving the acronym PROSPER. Conclusions: Individuals with psychosis can be supported to grow from traumatic experiences. Clinicians can support PTG through the provision of trauma-informed care that supports positively valued identity changes. For researchers, the findings provide an evidence-based theoretical framework for conceptualising PTG, which can be validated through longitudinal cohort studies and underpin the development of new clinical interventions

How do recorded mental health recovery narratives create connection and improve hopefulness?

Background: Mental health recovery narratives are an active ingredient of recovery-oriented interventions such as peer support. Recovery narratives can create connection and hope, but there is limited evidence on the predictors of impact. Aims: The aim of this study was to identify characteristics of the narrator, narrative content and participant which predict the short-term impact of recovery narratives on participants. Method: Independent studies were conducted in an experimental (n = 40) and a clinical setting (n = 13). In both studies, participants with mental health problems received recorded recovery narratives and rated impact on hopefulness and connection. Predictive characteristics were identified using multi-level modelling. Results: The experimental study found that narratives portraying a narrator as living well with mental health problems that is intermediate between no and full recovery, generated higher self-rated levels of hopefulness. Participants from ethnic minority backgrounds had lower levels of connection with narrators compared to participants from a white background, potentially due to reduced visibility of a narrator’s diversity characteristics. Conclusions: Narratives describing partial but not complete recovery and matching on ethnicity may lead to a higher impact. Having access to narratives portraying a range of narrator characteristics to maximise the possibility of a beneficial impact on connection and hopefulness