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.

Staff perspectives on the usability of electronic patient records for planning and delivering dementia care in nursing homes: a multiple case study.

BACKGROUND: The electronic patient record (EPR) has been introduced into nursing homes in order to facilitate documentation practices such as assessment and care planning, which play an integral role in the provision of dementia care. However, little is known about how the EPR facilitates or hinders these practices from the end-user's perspective. Therefore, the objective of this qualitative study was to explore the usability issues associated with the EPR for assessment and care planning for people with dementia in nursing homes from a staff perspective. METHODS: An exploratory, qualitative research design with a multiple case study approach was used. Contextual Inquiry was carried out with a variety of staff members (n = 21) who used the EPR in three nursing homes situated in Belgium, Czech Republic and Spain. Thematic analysis was used to code interview data, with codes then sorted into a priori components of the Health Information Technology Evaluation Framework: device, software functionality, organisational support. Two additional themes, structure and content, were also added. RESULTS: Staff provided numerous examples of the ways in which EPR systems are facilitating and hindering assessment and care planning under each component, particularly for people with dementia, who may have more complex needs in comparison to other residents. The way in which EPR systems were not customisable was a common theme across all three homes. A comparison of organisational policies and practices revealed the importance of training, system support, and access, which may be linked with the successful adoption of the EPR system in nursing homes. CONCLUSIONS: EPR systems introduced into the nursing home environment should be customisable and reflect best practice guidelines for dementia care, which may lead to improved outcomes and quality of life for people with dementia living in nursing homes. All levels of nursing home staff should be consulted during the development, implementation and evaluation of EPR systems as part of an iterative, user-centred design process.

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.

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.

Electronic patient records as a tool to facilitate care provision in nursing homes: an integrative review.

Objective: The electronic patient record (EPR) has been introduced into nursing homes with the aim of reducing time spent on documentation, improving documentation quality and increasing transferability of information, all of which should facilitate care provision. However, previous research has shown that EPR may be creating new burdens for staff. The purpose of this literature review is to explore how EPR is facilitating or hindering care provision in nursing homes. Methods: An integrative literature review was carried out using four electronic databases to search for relevant articles. After screening, 22 articles were included for thematic synthesis. Results: Thematic synthesis resulted in six analytical themes linked to care provision: time for direct care; accountability; assessment and care planning; exchange of information; risk awareness; and person-centered care. Conclusion: For EPR to facilitate care provision in nursing homes, consideration should be given to the type of device used for documentation, as well as the types of applications, the functionality, content, and structure of EPR. Further research exploring the experiences of end users is required to identify the optimal characteristics of an EPR system specifically for use in nursing homes.

Attitudes towards transactional data donation and linkage in a longitudinal population study: evidence from the Avon Longitudinal Study of Parents and Children.

Background: Commercial transaction records, such as data collected through banking and retail loyalty cards, present a novel opportunity for longitudinal population studies to capture data on participants' real-world behaviours and interactions. However, little is known about participant attitudes towards donating transactional records for this purpose. This study aimed to: (i) explore the attitudes of longitudinal population study participants towards sharing their transactional records for health research and data linkage; and (ii) explore the safeguards that researchers should consider implementing when looking to request transactional data from participants for data linkage studies. Methods: Participants in the Avon Longitudinal Study of Parents and Children were invited to a series of three focus groups with semi-structured discussions designed to elicit opinions. Through asking participants to attend three focus groups we aimed to facilitate more in-depth discussions around the potentially complex topic of data donation and linkage. Thematic analysis was used to sort data into overarching themes addressing the research questions. Results: Participants (n= 20) expressed a variety of attitudes towards data linkage, which were associated with safeguards to address concerns. This data was sorted into three themes: understanding, trust, and control. We discuss the importance of explaining the purpose of data linkage, consent options, who the data is linked with and sensitivities associated with different parts of transactional data. We describe options for providing further information and controls that participants consider should be available when studies request access to transactional records. Conclusions: This study provides initial evidence on the attitudes and concerns of participants of a longitudinal cohort study towards transactional record linkage. The findings suggest a number of safeguards which researchers should consider when looking to recruit participants for similar studies, such as the importance of ensuring participants have access to appropriate information, control over their data, and trust in the organisation.

The effectiveness of ICT-based neurocognitive and psychosocial rehabilitation programmes in people with mild dementia and mild cognitive impairment using GRADIOR and ehcoBUTLER: study protocol for a randomised controlled trial.

BACKGROUND: Cognitive rehabilitation is a highly individualised, non-pharmacological intervention for people with mild cognitive impairment (MCI) and dementia, which in recent years has also been developed for various IT platforms. METHODS: In this study, we aim to evaluate the effectiveness of the cognitive rehabilitation software GRADIOR in a multi-centre, single-blinded randomised controlled trial with people with MCI and mild dementia. A total of 400 people with MCI and mild dementia will be randomly allocated to one of four groups. This trial will compare the cognitive rehabilitation treatment using the GRADIOR programme with a psychosocial stimulation intervention (PSS) using the ehcoBUTLER platform, with a combined treatment consisting of GRADIOR and ehcoBUTLER, and with a group receiving treatment as usual during a period of 1 year. DISCUSSION: The outcomes of this clinical trial will be to determine any relevant changes in cognition, mood, quality of life, activities of daily living and quality of patient-carer relationship after 4 months and 1 year of intervention in a cross-sectional group comparison. Participants will be followed-up for 1 year to investigate potential long-term effects of the conducted treatments. TRIAL REGISTRATION: Current Controlled Trials ISRCTN, ID: 15742788 . Registered on 12 June 2017.

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).

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.

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.