Pomoc nebo překážka? Pohledy zaměstnance na použitelnosti elektronických záznamů (EPR) pro plánování péče o lidi s demencí v pečovatelských domech: komparativní případová studie

Charles University Faculty of Humanities STUDIA DLOUHOVĚKOSTI Pomoc nebo překážka? Pohledy zaměstnance na použitelnosti elektronických záznamů (EPR) pro plánování péče o lidi s demencí v pečovatelských domech: komparativní případová studie Summary of the dissertation Author: Mgr. Kate Shiells Supervisor: Doc. MUDr. Iva Holmerová, Ph.D. 2 Prague 2020 Přehled Pobytová zařízení poskytující péči seniorům (care homes, nursing homes) využívají stále častěji elektronické záznamy ('electronic patient records' nebo 'EPR'), k řízení dokumentace. Potenciální výhody EPR jsou: archivace informací; interoperabilita; lepší kvalita dokumentace. Nicméně využívání EPR v pečovatelských domech se v jednotlivých zemích liší. Mnohdy je ztíženo nekompatibilitou některých systémů s tímto prostředím. Navíc s EPR pro plánování péče o lidi s demencí není dostatek zkušeností. Cíl tohoto výzkumu je vypracovat doporučení pro budoucí vývoj EPR systémů pro plánování péče o lidi s demencí. Budou uskutečněny celkem čtyři případové studie čtyř pečovatelských domů v Belgii, České Republice, Španělsku a Anglii. Výzkum má dvě součásti: (i) zaprvé bude provedeno kvalitativní šetření mezi zaměstnanci ('contextual inquiry' ) s cílem zjistit í problémy spojené s využíváním EPR. Následně uskutečníme obsahovou analýzu získaných dat ('qualitatative...Charles University Faculty of Humanities Longevity Studies More of a hindrance than a help? Staff perspectives on the usability of Electronic Patient Records for planning and delivering dementia care in nursing homes: a multiple case study Summary of the dissertation Author: Mgr. Kate Shiells Supervisor: Doc. MUDr. Iva Holmerová, Ph.D. Prague 2020 2 Abstract Nursing homes are more frequently turning to the electronic patient record (EPR) to manage documentation. Potential benefits associated with EPR include the storage of longitudinal information, interoperability, and improved documentation quality. However, the uptake of EPR in nursing homes has varied considerably across countries, which has been associated with the incompatibility of some EPR systems with this environment. Furthermore, the suitability of EPR for planning dementia care is largely unknown. This study aims to produce recommendations for the future development of EPR systems for use in the assessment and care planning for people with dementia in nursing homes. Case studies of three nursing homes using EPR in Belgium, Czech Republic, and Spain were conducted. There are two elements to the study: (i) the contextual inquiry method is employed to explore usability issues with different types of end users. Data is analysed using qualitative...Doktorský obor Studia dlouhověkostiPh.D. - Longevity StudiesFakulta humanitních studiíFaculty of Humanitie

Self-reported needs and experiences of people with dementia living in nursing homes : a scoping review

Objectives: With rates of dementia continuing to rise, the impetus on improving care for people with dementia is growing. Unmet needs of people with dementia living in nursing homes have been linked with worsening neuropsychiatric symptoms, higher levels of depression, and reduced quality of life. Furthermore, proxy accounts exploring the needs of people with dementia have frequently been shown to be unreliable. Therefore, this literature review aims to explore the self-reported needs and experiences of people with dementia in nursing homes. Method: A scoping review of the literature was carried out using the databases PubMed and PsycINFO to search for relevant articles according to PRISMA guidelines. Search terms were designed to include both quantitative and qualitative study designs. Thematic synthesis was used to categorise findings into themes related to self-reported needs and experiences. Results: A total of 41 articles met the eligibility criteria. An analysis of study characteristics revealed more than half of studies used a qualitative design. Thematic synthesis resulted in eight themes: activities, maintaining previous roles, reminiscence, freedom and choice, appropriate environment, meaningful relationships, support with grief and loss, end-of-life care. Conclusion: Whilst the voice of people with dementia has previously been neglected in research, this review has shown that people with dementia in nursing homes are able to describe their experiences and communicate their needs. The findings in this review have provided a contribution towards guiding evidence-based practice that is tailored to the needs of nursing home residents with dementia

The increase in health care costs associated with muscle weakness in older people without long-term illnesses in the Czech Republic:results from the Survey of Health, Ageing and Retirement in Europe (SHARE)

Michal Steffl,1 Jan Sima,2 Kate Shiells,3 Iva Holmerova3 1Department of Physiology and Biochemistry, Faculty of Physical Education and Sport, Charles University, Prague, Czech Republic; 2Department of Sport Management, Faculty of Physical Education and Sport, Charles University, Prague, Czech Republic; 3Centre of Expertise in Longevity and Long-term Care, Faculty of Humanities, Charles University, Prague, Czech Republic Abstract: Muscle weakness and associated diseases are likely to place a considerable economic burden on government health care expenditure. Therefore, our aim for this study was to estimate the direct and indirect costs associated with muscle weakness in the Czech Republic. We applied a cost-of-illness approach using data from the Survey of Health, Ageing and Retirement in Europe (SHARE). Six hundred and eighty-nine participants aged 70 years and over and without any long-term illnesses were included in our study. A generalized linear model with gamma distribution was used, and odds ratio (OR) was calculated in order to explore the effect of muscle weakness on direct and indirect costs. For both genders, muscle weakness had a statistically significant impact on direct costs (OR =2.11), but did not have a statistically significant impact on indirect costs (OR =1.08) or on total cost (OR =1.51). Muscle weakness had the greatest statistically significant impact on direct costs in females (OR =2.75). In conclusion, our study has shown that muscle weakness may lead to increased direct costs, and consequently place a burden on health care expenditure. Therefore, the results of this study could lead to greater interest in the prevention of muscle weakness among older people in the Czech Republic. Keywords: direct cost, indirect cost, economic burden, sarcopenia, frailt

Relationship between sarcopenia and physical activity in older people: a systematic review and meta-analysis

Physical activity (PA) has been identified as beneficial for many diseases and health disorders, including sarcopenia. The positive influence of PA interventions on sarcopenia has been described previously on many occasions. Current reviews on the topic include studies with varied PA interventions for sarcopenia; nevertheless, no systematic review exploring the effects of PA in general on sarcopenia has been published. The main aim of this study was to explore the relationship between PA and sarcopenia in older people on the basis of cross-sectional and cohort studies. We searched PubMed, Scopus, EBSCOhost, and ScienceDirect for articles addressing the relationship between PA and sarcopenia. Twenty-five articles were ultimately included in the qualitative and quantitative syntheses. A statistically significant association between PA and sarcopenia was documented in most of the studies, as well as the protective role of PA against sarcopenia development. Furthermore, the meta-analysis indicated that PA reduces the odds of acquiring sarcopenia in later life (odds ratio [OR] =0.45; 95% confidence interval [CI] 0.37–0.55). The results of this systematic review and meta-analysis confirm the beneficial influence of PA in general for the prevention of sarcopenia.<br/

Parental decision making about safer sleep practices: A qualitative study of the perspectives of families with additional health and social care needs

Introduction: Despite a decline in Sudden Unexpected Death in Infancy in the UK since 2004, inequalities have widened with higher rates among families from deprived backgrounds and those known to child protection services. Almost all cases involve parents who had engaged in unsafe sleeping practices despite awareness of safer sleeping advice. Objective: To understand the perspectives surrounding safer sleep of families supported by statutory child protection agencies, and use behavior change theory to inform how approaches to providing safer sleep advice to these families may be modified. Participants and setting: We interviewed 14 mothers, 2 fathers and one grandmother, who had recent contact with child protection services in northeast England. Methods: In-depth, semi-structured interviews, with purposive sampling. The COM-B model (Capability, Opportunity, and Motivation) structured our analysis. Results: Parents described how anxiety, sleep deprivation, settling infants, illness, and a desire to bond with infants influence their decision making about sleep. Parents valued credible, trusted sources and understanding how safer sleep practices protect infants. Responses to questions about ‘out of routine’ situations suggested social pressures surrounding routines and ‘good parenting’ may preclude parents from acknowledging risks and planning for these situations. Conclusion: Open conversations tailored to the needs of families, focused upon understanding why and when parent(s) do or do not follow safer sleep guidance seem a promising way of promoting safer sleep practices. Safer sleep discussions with these families are likely to be best delivered as part of wider infant care by professionals who have an established and continuing trusting relationship with parents. While advice and information should be provided by any professional in contact with the family with the necessary expertise, sensitive conversations around sleeping practices, particularly co-sleeping, may be more easily facilitated by professionals where the statutory responsibility for safeguarding is less apparent

Public attitudes towards sharing loyalty card data for academic health research: a qualitative study

Background: A growing number of studies show the potential of loyalty card data for use in health research. However , research into public perceptions of using this data is limited. This study aimed to investigate public attitudes towards donating loyalty card data for academic health research, and the safeguards the public would want to see implemented. The way in which participant attitudes varied according to whether loyalty card data would be used for either cancer or COVID-19 research was also examined. Methods: Participants (N = 40) were recruited via Prolific Academic to take part in semi-structured telephone interviews , with questions focused on data sharing related to either COVID-19 or ovarian/bowel cancer as the proposed health condition to be researched. Content analysis was used to identify sub-themes corresponding to the two a priori themes, attitudes and safeguards. Results: Participant attitudes were found to fall into two categories, either rational or emotional. Under rational, most participants were in favour of sharing loyalty card data. Support of health research was seen as an important reason to donate such data, with loyalty card logs being considered as already within the public domain. With increased understanding of research purpose, participants expressed higher willingness to donate data. Within the emotional category, participants shared fears about revealing location information and of third parties obtaining their data. With regards to safeguards, participants described the importance of anonymisation and the level of data detail; the control, convenience and choice they desired in sharing data; and the need for transparency and data security. The change in hypothetical purpose of the data sharing, from Covid-19 to cancer research, had no impact on participants' decision to donate, although did affect their understanding of how loyalty card data could be used. Conclusions: Based on interviews with the public, this study contributes recommendations for those researchers and the wider policy community seeking to obtain loyalty card data for health research. Whilst participants were largely in favour of donating loyalty card data for academic health research, information, choice and appropriate safeguards are all exposed as prerequisites upon which decisions are made

Participant acceptability of digital footprint data collection strategies:an exemplar approach to participant engagement and involvement in the ALSPAC birth cohort study

INTRODUCTION: Digital footprint records – the tracks and traces amassed by individuals as a result of their interactions with the internet, digital devices and services – can provide ecologically valid data on individual behaviours. These could enhance longitudinal population study databanks; but few UK longitudinal studies are attempting this. When using novel sources of data, study managers must engage with participants in order to develop ethical data processing frameworks that facilitate data sharing whilst safeguarding participant interests. OBJECTIVES: This paper aims to summarise the participant involvement approach used by the ALSPAC birth cohort study to inform the development of a framework for using linked participant digital footprint data, and provide an exemplar for other data linkage infrastructures. METHODS: The paper synthesises five qualitative forms of inquiry. Thematic analysis was used to code transcripts for common themes in relation to conditions associated with the acceptability of sharing digital footprint data for longitudinal research. RESULTS: We identified six themes: participant understanding; sensitivity of location data; concerns for third parties; clarity on data granularity; mechanisms of data sharing and consent; and trustworthiness of the organisation. For cohort members to consider the sharing of digital footprint data acceptable, they require information about the value, validity and risks; control over sharing elements of the data they consider sensitive; appropriate mechanisms to authorise or object to their records being used; and trust in the organisation. CONCLUSION: Realising the potential for using digital footprint records within longitudinal research will be subject to ensuring that this use of personal data is acceptable; and that rigorously controlled population data science benefiting the public good is distinguishable from the misuse and lack of personal control of similar data within other settings. Participant co-development informs the ethical-governance framework for these novel linkages in a manner which is acceptable and does not undermine the role of the trusted data custodian