Papers by Justine Schneider
Quality in Ageing and Older Adults, Nov 9, 2020
This study explored the coping styles that can be inferred from the discourse of dyads with demen... more This study explored the coping styles that can be inferred from the discourse of dyads with dementia, and how these appear to impact on care management. Design: This was a case study approach. Participants were recruited from two teams managing crisis in dementia in the UK. We employed multiple qualitative interviews with people with dementia and their family carers over the course of one month. The analysis was first performed through thematic analysis. Data were further analysed through narrative inquiry to create a story line, or play in our case, for our findings. Findings: Five dyads were interviewed and a total of 16 interviews were conducted. Three dyads were husband-wife and two were daughter-mother relationships. The mean age was 67.4 for carers and 79.8 for people with dementia. In these cases, the carer assumed responsibility for managing the episode and was more likely to seek formal help if a pre-existing plan was in place. Otherwise, when a crisis arose, dyads preferred to avoid involving professionals. Originality: This is the first study using qualitative interviews of dyads to inquire into their experience of mental health crisis. Practical implications: Psychosocial interventions should aim to identify and replace unhelpful strategies used by dyads to manage crisis episodes.
Maturitas, Jun 1, 2019
Background: Direct involvement in creative activities can have benefits in terms of improved atte... more Background: Direct involvement in creative activities can have benefits in terms of improved attention and positive engagement for older people. We used the Social Return on Investment approach (SROI) to explore the social and economic benefits of arts activities for older people living in residential homes in England. Methods: We complied with the CHEERS checklist and followed the six stages of SROI as reported in the literature. Results: We identified three main stakeholders: care home residents, care home personnel, and activity coordinators. For residents, the outcomes of interest were: community inclusion, mental and physical health, improved cognition and decreased social isolation. For care home personnel and activity coordinators the outcomes were: improved skills in caring for older people and increased confidence in using arts intervention. The analysis yielded an SROI of £1.20 for every £1 of expenditure.
Journal of Medical Internet Research, Dec 3, 2020
Background: Technology can be helpful in supporting people with dementia in their daily lives. Ho... more Background: Technology can be helpful in supporting people with dementia in their daily lives. However, people with dementia are often not fully involved in the development process of new technology. This lack of involvement of people with dementia in developing technology-based interventions can lead to the implementation of faulty and less suitable technology. Objective: This systematic review aims to evaluate current approaches and create best practice guidelines for involving people with dementia in developing technology-based interventions. Methods: A systematic search was conducted in January 2019 in the following databases: EMBASE (Excerpta Medica database), PsycINFO, MEDLINE (Medical Literature Analysis and Retrieval System Online), CINAHL (Cumulated Index to Nursing and Allied Health Literature), and Web of Science. The search strategy included search terms in 3 categories: dementia, technology, and involvement in development. Narrative synthesis wove the evidence together in a structured approach. Results: A total of 21 studies met the inclusion criteria. Most studies involved people with dementia in a single phase, such as development (n=10), feasibility and piloting (n=7), or evaluation (n=1). Only 3 studies described involvement in multiple phases. Frequently used methods for assessing involvement included focus groups, interviews, observations, and user tests. Conclusions: Most studies concluded that it was both necessary and feasible to involve people with dementia, which can be optimized by having the right prerequisites in place, ensuring that technology meets standards of reliability and stability, and providing a positive research experience for participants. Best practice guidelines for the involvement of people with dementia in developing technology-based interventions are described.
International Journal of Environmental Research and Public Health, Jul 28, 2020
Dementia leads to progressive critical situations that can escalate to a crisis episode if not ad... more Dementia leads to progressive critical situations that can escalate to a crisis episode if not adequately managed. A crisis may also resolve spontaneously, or not resolve after receiving professional support. Because of the intensity of the crisis, the extent to which the person engages in decision making for their own care is often decreased. In UK mental health services, 'crisis teams' work to avert the breakdown of support arrangements and to avoid admissions to hospital or long-term care where possible. This study aimed to explore the views of crisis teams about promoting the involvement of the person with dementia in decision-making at all points in the care pathway, here defined as co-production. The staff of crisis teams from three NHS Trusts in the UK were interviewed through focus groups. Data were analysed using framework analysis. Three focus groups were run with 22 staff members. Data clustered around strategies used to promote the active involvement of the person with dementia, and the challenges experienced when delivering the care. Staff members reported that achieving a therapeutic relationship was fundamental to successful co-production. Miscommunication and/or lack of proper contact between the team and the individuals and carers receiving support adversely affected the quality of care. Making service users aware of the support provided by crisis teams before they need this may help promote a positive therapeutic relationship and effective care management.
The ‘Care Certificate’ was introduced in April 2015 as a new training programme that all new care... more The ‘Care Certificate’ was introduced in April 2015 as a new training programme that all new care workers (Health Care Assistants and Social Support Workers) should achieve before working unsupervised. This research aimed to evaluate the effectiveness of the Care Certificate in achieving an improved induction and training so that care workers are better-prepared to provide high quality care. We carried out a national telephone survey with 401 staff who have responsibility for the induction of care workers in care organisations. We also interviewed 68 care staff and 24 managers at 10 different care organisations to get a more detailed understanding of their experiences of the Care Certificate training. We found that the uptake of the Care Certificate has been good, and it is widely welcomed as providing a standardised approach to improving the care skills and confidence of those new to care. However, there is a proportion of smaller care organisations where the Care Certificate has n...
Dementia, 2021
Background Cognitive stimulation therapy (CST) is a psychosocial intervention for people with dem... more Background Cognitive stimulation therapy (CST) is a psychosocial intervention for people with dementia and can benefit cognition and quality of life. A touch-screen individualised CST (iCST) application has been developed to improve on accessibility and provide increased interactivity. This study aimed to explore the attitudes of people with dementia, carers and healthcare professionals in Indonesia towards the iCST application and related technology. Methods Four focus groups were organised: one comprising family carers ( n = 3), two comprising people with dementia and family carers ( n = 12) and one made up of family carers and home care workers ( n = 3). Participants discussed the uses of technology, tried out the iCST application and completed a usability and acceptability questionnaire. Furthermore, 21 healthcare professionals attended an expert meeting to discuss the potential of implementing the iCST application in the community. Results Attitudes towards technology were posi...
BACKGROUND There is a lack of technological resources for the mental stimulation and communicatio... more BACKGROUND There is a lack of technological resources for the mental stimulation and communication of people with dementia which can be helpful in improving cognition and Quality of Life (QoL). Individual Cognitive Stimulation Therapy (iCST) for people with dementia has the potential to be adapted onto a touchscreen format. This can improve accessibility and provide mental stimulation using interactive features. There is a need for a rigorous and systematic approach towards development leading to improved suitability and implementation of the intervention, so that more people can benefit from its use. OBJECTIVE This study aimed to develop and investigate the usability of Thinkability: an iCST application (iCST app) for people with dementia and carers on touchscreen tablets. METHODS The Medical Research Council (MRC) Framework for evaluating complex interventions and the Centre for eHealth Research (CeHRes) roadmap served as frameworks for the stages of intervention and technology de...
Home Health Care Management & Practice, 2019
This article reports on the use of an innovative reflective diary method with paid home care work... more This article reports on the use of an innovative reflective diary method with paid home care workers caring for people with dementia. It examines the key features of the diary design, recruitment and training of participants, diarists’ approaches and responses to diary-keeping, and evaluates the use of diaries in this context. Following training, 11 volunteers (all female) employed by a U.K.-based home care organization kept diaries of their experiences of caring for those with dementia. Using specially designed diaries, they wrote about their visits to clients for a period of approximately 4 months and were remunerated for up to 16 extra hours at their usual hourly rate of pay. Overall, home care workers engaged well with the process, keeping regular, lengthy, timely, and reflective diary entries. Diary-keeping provided a means for these workers to express their emotions about their work, while enhancing their self-insight and care practices. We demonstrate the feasibility of diari...
Sociological Research Online, 2019
This study applies video analysis to an investigation of interactions among people with dementia ... more This study applies video analysis to an investigation of interactions among people with dementia in a cultural context, specifically a visual art exhibition in a gallery. The study adopts a sociologically informed approach to explore the role of artworks and how these may be beneficial to dementia care, by focusing on meaning-making conversational practices among people living with dementia. The interactions of different individuals with various forms of dementia were recorded during three gallery visits, including their engagement with gallery attendants and artworks. The findings reveal the socially empowering impact of interactions related to artwork, with complex patterns in bodily behaviour and facial expressions meaning that orientation to dementia became negligible. The article makes a contribution to the growing field of sociology of ageing and well-being from an interaction analytic perspective, indicating that cultural values can play a greater role in the care of people l...
Ageing and Society, 2018
ABSTRACTThe aims of this exploratory study were: to investigate the process of visual art appreci... more ABSTRACTThe aims of this exploratory study were: to investigate the process of visual art appreciation in a person with dementia, in real time; and to test the feasibility of using video-analysis as a method to explore this process by and with a person who has minimal verbal expression. Gallery personnel guided a woman with severe dementia around an exhibition. Audio-visual recordings of the interactions were analysed. Patterns were identified, and interpreted in the light of conversation analysis theory and research. Evidence was found of turn-taking vocalisations on the part of the research participant. Her participation in a dialogical process was facilitated by the skilled and empathic gallery personnel in ways that the analysis makes clear. We argue that this supports the inference that successful communicative acts took place, contrary to expectations in the light of the participant's level of disability. We demonstrate in this paper how a woman with minimal speech due to ...
BMJ Open, 2019
IntroductionIn older adults, dementia and depression are associated with individual distress and ... more IntroductionIn older adults, dementia and depression are associated with individual distress and high societal costs. Music interventions such as group music therapy (GMT) and recreational choir singing (RCS) have shown promising effects, but their comparative effectiveness across clinical subgroups is unknown. This trial aims to determine effectiveness of GMT, RCS and their combination for care home residents and to examine heterogeneity of treatment effects across subgroups.Methods and analysisThis large, pragmatic, multinational cluster-randomised controlled trial with a 2×2 factorial design will compare the effects of GMT, RCS, both or neither, for care home residents aged 65 years or older with dementia and depressive symptoms. We will randomise 100 care home units with ≥1000 residents in total across eight countries. Each intervention will be offered for 6 months (3 months 2 times/week followed by 3 months 1 time/week), with extension allowed if locally available. The primary ...
Health Services and Delivery Research, 2017
BackgroundCare homes are the institutional providers of long-term care for older people. The OPTI... more BackgroundCare homes are the institutional providers of long-term care for older people. The OPTIMAL study argued that it is probable that there are key activities within different models of health-care provision that are important for residents’ health care.ObjectivesTo understand ‘what works, for whom, why and in what circumstances?’. Study questions focused on how different mechanisms within the various models of service delivery act as the ‘active ingredients’ associated with positive health-related outcomes for care home residents.MethodsUsing realist methods we focused on five outcomes: (1) medication use and review; (2) use of out-of-hours services; (3) hospital admissions, including emergency department attendances and length of hospital stay; (4) resource use; and (5) user satisfaction. Phase 1: interviewed stakeholders and reviewed the evidence to develop an explanatory theory of what supported good health-care provision for further testing in phase 2. Phase 2 developed a ...
International Psychogeriatrics, 2018
ABSTRACTObjectives:Dementia often limits the agency of the person to such an extent that there is... more ABSTRACTObjectives:Dementia often limits the agency of the person to such an extent that there is need for external support in making daily life decisions. This support is usually provided by family members who are sometimes legally empowered to engage in decision-making on behalf of the person for whom they care. However, such family carers receive little or no information on how to best provide support when there is a lack of capacity. This may have an impact on the agency of the person with dementia. This review explores the experience of agency in people living with dementia.Design:A systematic search was conducted on IBSS, MedLine, PsychINFO, EMBASE, and CINAHL. Two independent researchers screened the studies and conducted the quality appraisal. We used meta-ethnography for data analysis. As part of the synthesis, we identified behavioral mechanisms underlying the process of decision-making and looked at how the support of carers comes into play in making deliberate choices.Re...
International journal of nursing studies, Jan 29, 2017
Ever-growing demands on care systems have increased reliance on healthcare support workers. In th... more Ever-growing demands on care systems have increased reliance on healthcare support workers. In the UK, their training has been variable, but organisation-wide failures in care have prompted questions about how this crucial section of the workforce should be developed. Their training, support and assessment has become a policy priority. This paper examines: healthcare support workers' access to training, support and assessment; perceived gaps in training provision; and barriers and facilitators to implementation of relevant policies in acute care. We undertook a qualitative study of staff caring for older inpatients at ward, divisional or organisational-level in three acute National Health Service hospitals in England in 2014. 58 staff working with older people (30 healthcare support workers and 24 staff managing or working alongside them) and 4 healthcare support worker training leads. One-to-one semi-structured interviews included: views and experiences of training and support;...
Age and ageing, Jan 5, 2018
care home residents have high healthcare needs not fully met by prevailing healthcare models. Thi... more care home residents have high healthcare needs not fully met by prevailing healthcare models. This study explored how healthcare configuration influences resource use. a realist evaluation using qualitative and quantitative data from case studies of three UK health and social care economies selected for differing patterns of healthcare delivery to care homes. Four homes per area (12 in total) were recruited. A total of 239 residents were followed for 12 months to record resource-use. Overall, 181 participants completed 116 interviews and 13 focus groups including residents, relatives, care home staff, community nurses, allied health professionals and General Practitioners. context-mechanism-outcome configurations were identified explaining what supported effective working between healthcare services and care home staff: (i) investment in care home-specific work that legitimises and values work with care homes; (ii) relational working which over time builds trust between practitioner...
International Psychogeriatrics, 2017
ABSTRACTBackground:Arts-based interventions play an important role in the care of people with dem... more ABSTRACTBackground:Arts-based interventions play an important role in the care of people with dementia. Yet, creative arts are seldom implemented as a tool to enhance the care and wellbeing of people with dementia.Methods:We examined the involvement of care staff in creative arts activities in residential care. Aspects of involvement that appear to influence outcomes in people with dementia were identified and analyzed. A broad systematic literature search of MedLine, EMBASE, PsychInfo, CINAHL, ASSIA, SCOPUS, and Web of Science led to the identification of 14 papers. The studies identified through the search process were examined in terms of intervention, context, mechanism and outcome, and the relationships between these aspects.Results:Training sessions were identified as an opportunity to educate care personnel on useful techniques that are relevant to daily care practice. Evidence from the literature suggests that creative arts programs play a significant role in the way staff a...
Health technology assessment (Winchester, England), May 1, 2017
There is currently no disease-modifying treatment available to halt or delay the progression of t... more There is currently no disease-modifying treatment available to halt or delay the progression of the disease pathology in dementia. An agreed core set of the best-available and most appropriate outcomes for disease modification would facilitate the design of trials and ensure consistency across disease modification trials, as well as making results comparable and meta-analysable in future trials. To agree a set of core outcomes for disease modification trials for mild to moderate dementia with the UK dementia research community and patient and public involvement (PPI). We included disease modification trials with quantitative outcomes of efficacy from (1) references from related systematic reviews in workstream 1; (2) searches of the Cochrane Dementia and Cognitive Improvement Group study register, Cochrane Central Register of Controlled Trials, Cumulative Index to Nursing and Allied Health Literature, EMBASE, Latin American and Caribbean Health Sciences Literature and PsycINFO on 11...
The Journal of Mental Health Training, Education and Practice, 2016
Purpose – Formal ties between the theatre and research dissemination have only recently developed... more Purpose – Formal ties between the theatre and research dissemination have only recently developed and its general efficacy is largely unknown. Here the purpose of this paper is to redress this neglect by examining the effectiveness of a research-based theatrical event in promoting dementia knowledge transfer with a group of front line care workers. The event ran over eight days and consisted of an original theatrical production followed by a chaired audience discussion and workshops. Design/methodology/approach – Questionnaires which had been developed specifically for this evaluation were completed by 863 front line workers on the day of the event, eliciting their profiles and immediate reactions. Three months after the event, 30 completed a follow-up questionnaire and eight were interviewed. Findings – Attendance was well received with high degrees of both cognitive and emotional engagement being expressed in the initial questionnaire. The follow-up evaluation suggested that these...
Trials, 2015
Background: People aged 75 years and over account for 1 in 4 of all hospital admissions. There ha... more Background: People aged 75 years and over account for 1 in 4 of all hospital admissions. There has been increasing recognition of problems in the care of older people, particularly in hospitals. Evidence suggests that older people judge the care they receive in terms of kindness, empathy, compassion, respectful communication and being seen as a person not just a patient. These are aspects of care to which we refer when we use the term 'relational care'. Healthcare assistants deliver an increasing proportion of direct care to older people, yet their training needs are often overlooked. Methods/Design: This study will determine the acceptability and feasibility of a cluster randomised controlled trial of 'Older People's Shoes' a 2-day training intervention for healthcare assistants caring for older people in hospital. Within this pilot, 2-arm, parallel, cluster randomised controlled trial, healthcare assistants within acute hospital wards are randomised to either the 2-day training intervention or training as usual. Registered nurses deliver 'Older People's Shoes' over 2 days, approximately 1 week apart. It contains three components: experiential learning about ageing, exploration of older people's stories, and customer care. Outcomes will be measured at the level of patient (experience of emotional care and quality of life during their hospital stay), healthcare assistant (empathy and attitudes towards older people), and ward (quality of staff/patient interaction). Semi-structured interviews of a purposive sample of healthcare assistants receiving the intervention, and all trainers delivering the intervention, will be undertaken to gain insights into the experiences of both the intervention and the trial, and its perceived impact on practice. Discussion: Few training interventions for care staff have been rigorously tested using randomised designs. This study will establish the viability of a definitive cluster randomised controlled trial of a new training intervention to improve the relational care proided by healthcare assistants working with older people in hospital. Trial registration: The study was registered as an International Standard Randomised Controlled Trial (ISRCTN10385799) on 29 December 2014.
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Papers by Justine Schneider