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Background: In care home research, residents are rarely included in patient and public involvement and engagement (PPIE) despite their lived experiences of day-to-day care. This paper reports on a novel approach to PPIE, developed in response to Covid-19, and utilised in a large UK-based study focused on care homes. PPIE sessions were facilitated on behalf of the research team by Activity Providers (APs) already working within the care homes. This paper provides an account of how PPIE with care home residents can be achieved., Methods: An exploratory design was used to see if it was possible to support "in-house" PPIE, with researchers working at a distance in partnership with care home staff. The National Activity Providers Association recruited five APs working in care homes. A series of optional discussion or activity sessions were developed by the research team in partnership with APs, tailored to reflect the research topics of interest and to make sessions accessible to residents with differing needs., Results: APs facilitated four rounds of PPIE with up to 56 residents per topic, including individuals living with cognitive and communication impairments. Topics discussed included residents' views on data use, measuring quality of life and the prioritisation of care-related data for study collection. Feedback from the residents was observed to have unexpected and positive changes to participating care homes' practice. APs valued participation and working with researchers. They identified acquisition of new skills and insights into residents' thoughts and preferences as direct benefits. Challenges included time pressures on APs and managing emotive feedback. APs were able to approach residents at times convenient to them and in ways that best suited their individual needs. PPIE with residents provided different perspectives, particularly with respect to the importance of different types of data, and constructive challenge about some of the research team's assumptions., Conclusions: PPIE with APs as research partners is a promising approach to working in an inclusive and participatory way with care home residents. The voices of older care home residents, including those living with cognitive or communicative impairments, are important for the successful and meaningful completion of research., (© 2024. The Author(s).)

Background: The COVID-19 pandemic caused various disruptions to NHS maternity services in England. Changes were made to antenatal and postnatal care and the way that information was shared with maternity service users during these times. Fewer face-to-face appointments, increased virtual appointments and changes in guidance about the suitability of the COVID-19 vaccine without appropriate information sharing and evidence caused concern., Methods: This study took a blended inductive-deductive approach to secondary data analysis using a population subset of 16 from a wider study that sought to understand the impact of COVID-19 on maternity services in England. Participants of this study were aged 28-44 and gave birth using NHS maternity services in England. The data were collected and coded using Rapid Analysis Procedure sheets, which generated key themes, which are used here to structure the results., Results: Four main themes were generated from the analysis: 1) service restrictions to antenatal and postnatal appointments 2) access to information and changes to antenatal and postnatal care 3) inconsistencies in the implementation of government and NHS policy and 4) limited information about COVID-19 vaccine provided by NHS trusts and hesitancy in vaccine acceptance., Conclusion: Participants experienced poor communication that affected their understanding of maternity service changes and there was limited general and maternal health information provided. Vaccine information was also inadequate, and participants expressed a desire for clearer guidance. The UK Government, Royal College of Obstetricians and Gynaecologists, and NHS must collaborate with maternity service users to ensure that there are evidence-based guidelines and policies that can be understood and standardised across all NHS maternity trusts., (© 2023. The Author(s).)

Background: Post-stroke physical activity reduces disability and risk of further stroke. When stroke rehabilitation ends, some people feel abandoned by services and struggle to undertake physical activities that support recovery and health. The aim of this study was to codesign a novel text message intervention to promote physical activity among people with stroke and provide support when formal rehabilitation ends. This manuscript describes the intervention development processes that will inform future pilot and feasibility studies., Methods: The planned intervention was a series of text messages to be sent in a predetermined sequence to people with stroke at the end of rehabilitation. The intervention, underpinned by behaviour change theory and using salient behaviour change techniques, would provide daily messages offering encouragement and support for the uptake and maintenance of physical activity following stroke. The intervention was codesigned by a Collaborative Working Group, comprised of people with stroke, rehabilitation therapists, representatives from stroke charities and academics. A four-step framework was used to design the intervention: formative research on physical activity post-stroke, creation of the behaviour change text message intervention, pre-testing and refinement. Formative research included a review of the scientific evidence and interviews with community-dwelling people with stroke. Data generated were used by the Collaborative Working Group to identify topics to be addressed in the intervention. These were mapped to constructs of the Health Action Process Approach, and salient behaviour change techniques to deliver the intervention were identified. The intervention was rendered into a series of text messages to be delivered over 12 weeks. The draft intervention was revised and refined through an iterative process including review by people with stroke, their spouses, rehabilitation therapists and experts in the field of stroke. The messages encourage regular physical activity but do not prescribe exercise or provide reminders to exercise at specific times. They use conversational language to encourage engagement, and some are personalised for participants. Quotes from people with stroke provide encouragement and support and model key behaviour change techniques such as goal setting and coping planning., Discussion: Co-design processes were critical in systematically developing this theory and evidence-based intervention. People with stroke and rehabilitation therapists provided insights into perceived barriers post-rehabilitation and identified strategies to overcome them. The structured multistep approach highlighted areas for improvement through successive rounds of review. The intervention will be tested for acceptability, feasibility and effectiveness in future studies. This co-design approach could be used for interventions for other heath behaviours and with different populations., (© 2023. The Author(s).)

Background: Evidence for benefits of physical activity after stroke is unequivocal. However, many people with stroke are inactive, spending > 80% of waking hours sedentary even when they have physical capacity for activity, indicating barriers to physical activity participation that are not physical. WeWalk is a 12-week person-centred dyadic behaviour change intervention in which a person with stroke (PWS) and a walking buddy form a dyad to work together to support the PWS to increase their physical activity by walking outdoors. This pilot study examined the feasibility of recruiting dyads, explored their perceptions of acceptability and their experiences using WeWalk, to identify required refinements before progression to a clinical trial., Methods: Design: A single-arm observational pilot study with qualitative evaluation., Intervention: WeWalk involved facilitated face-to-face and telephone sessions with a researcher who was also a behaviour change practitioner, supported by intervention handbooks and diaries, in which dyads agreed walking goals and plans, monitored progress, and developed strategies for maintaining walking., Evaluation: Descriptive data on recruitment and retention were collected. Interview data were collected through semi-structured interviews and analysed using thematic analysis, guided by a theoretical framework of acceptability., Results: We recruited 21 dyads comprising community dwelling PWS and their walking buddies. Ten dyads fully completed WeWalk before government-imposed COVID-19 lockdown. Despite lockdown, 18 dyads completed exit interviews. We identified three themes: acceptability evolves with experience, mutuality, and person-centredness with personally relevant tailoring. As dyads recognised how WeWalk components supported walking, perceptions of acceptability grew. Effort receded as goals and enjoyment of walking together were realised. The dyadic structure provided accountability, and participants' confidence developed as they experienced physical and psychological benefits of walking. WeWalk worked best when dyads exhibited relational connectivity and mutuality in setting and achieving goals. Tailoring intervention components to individual circumstances and values supported dyads in participation and achieving meaningful goals., Conclusion: Recruiting dyads was feasible and most engaged with WeWalk. Participants viewed the dyadic structure and intervention components as acceptable for promoting outdoor walking and valued the personally tailored nature of WeWalk. Developing buddy support skills and community delivery pathways are required refinements. ISCTRN number: 34488928., (© 2023. The Author(s).)

Background: Care homes provide long term care for older people. Countries with standardised approaches to residents' assessment, care planning and review (known as minimum data sets (MDS)) use the aggregate data to guide resource allocation, monitor quality, and for research. Less is known about how an MDS affects how staff assess, provide and review residents' everyday care. The review aimed to develop a theory-driven understanding of how care home staff can effectively implement and use MDS to plan and deliver care for residents., Methods: The realist review was organised according to RAMESES (Realist And Meta-narrative Evidence Synthesis: and Evolving Standards) guidelines. There were three overlapping stages: 1) defining the scope of the review and theory development on the use of minimum data set 2) testing and refining candidate programme theories through iterative literature searches and stakeholders' consultations as well as discussion among the research team; and 3) data synthesis from stages 1 and 2. The following databases were used MEDLINE via OVID, Embase, CINAHL (Cumulative Index to Nursing and Allied Health Literature), ASSIA [Applied Social Sciences Citation Index and Abstracts]) and sources of grey literature., Results: Fifty-one papers informed the development of three key interlinked theoretical propositions: motivation (mandates and incentives for Minimum Data Set completion); frontline staff monitoring (when Minimum Data Set completion is built into the working practices of the care home); and embedded recording systems (Minimum Data Set recording system is integral to collecting residents' data). By valuing the contributions of staff and building on existing ways of working, the uptake and use of an MDS could enable all staff to learn with and from each other about what is important for residents' care CONCLUSIONS: Minimum Data Sets provides commissioners service providers and researchers with standardised information useful for commissioning planning and analysis. For it to be equally useful for care home staff it requires key activities that address the staff experiences of care, their work with others and the use of digital technology., Registration: PROSPERO registration number CRD42020171323., (© 2022. The Author(s).)

Background: The purpose of this trial was to test if the Norfolk Diabetes Prevention Study (NDPS) lifestyle intervention, recently shown to reduce the incidence of type 2 diabetes in high-risk groups, also improved glycaemic control in people with newly diagnosed screen-detected type 2 diabetes., Methods: We screened 12,778 participants at high risk of type 2 diabetes using a fasting plasma glucose and glycosylated haemoglobin (HbA1c). People with screen-detected type 2 diabetes were randomised in a parallel, three-arm, controlled trial with up to 46 months of follow-up, with a control arm (CON), a group-based lifestyle intervention of 6 core and up to 15 maintenance sessions (INT), or the same intervention with additional support from volunteers with type 2 diabetes trained to co-deliver the lifestyle intervention (INT-DPM). The pre-specified primary end point was mean HbA1c compared between groups at 12 months., Results: We randomised 432 participants (CON 149; INT 142; INT-DPM 141) with a mean (SD) age of 63.5 (10.0) years, body mass index (BMI) of 32.4 (6.4) kg/m 2 , and HbA1c of 52.5 (10.2) mmol/mol. The primary outcome of mean HbA1c at 12 months (CON 48.5 (9.1) mmol/mol, INT 46.5 (8.1) mmol/mol, and INT-DPM 45.6 (6.0) mmol/mol) was significantly lower in the INT-DPM arm compared to CON (adjusted difference -2.57 mmol/mol; 95% CI -4.5, -0.6; p = 0.007) but not significantly different between the INT-DPM and INT arms (-0.55 mmol/mol; 95% CI -2.46, 1.35; p = 0.57), or INT vs CON arms (-2.14 mmol/mol; 95% CI -4.33, 0.05; p = 0.07). Subgroup analyses showed the intervention had greater effect in participants < 65 years old (difference in mean HbA1c compared to CON -4.76 mmol/mol; 95% CI -7.75, -1.78 mmol/mol) than in older participants (-0.46 mmol/mol; 95% CI -2.67, 1.75; interaction p = 0.02). This effect was most significant in the INT-DPM arm (-6.01 mmol/mol; 95% CI -9.56, -2.46 age < 65 years old and -0.22 mmol/mol; 95% CI -2.7, 2.25; aged > 65 years old; p = 0.007). The use of oral hypoglycaemic medication was associated with a significantly lower mean HbA1c but only within the INT-DPM arm compared to CON (-7.0 mmol/mol; 95% CI -11.5, -2.5; p = 0.003)., Conclusion: The NDPS lifestyle intervention significantly improved glycaemic control after 12 months in people with screen-detected type 2 diabetes when supported by trained peer mentors with type 2 diabetes, particularly those receiving oral hypoglycaemics and those under 65 years old. The effect size was modest, however, and not sustained at 24 months., Trial Registration: ISRCTN34805606 . Retrospectively registered 14.4.16., (© 2021. The Author(s).)

Background: Approximately 418,000 people live in care homes in the UK, yet accessible, robust data on care home populations and organisation are lacking. This hampers our ability to plan, allocate resources or prevent risk. Large randomised controlled trials (RCTs) conducted in care homes offer a potential solution. The value of detailed data on residents' demographics, outcomes and contextual information captured in RCTs has yet to be fully realised. Irrespective of the intervention tested, much of the trial data collected overlaps in terms of structured assessments and descriptive information. Given the time and costs required to prospectively collect data in these populations, pooling anonymised RCT data into a structured repository offers benefit; secondary analyses of pooled RCT data can improve understanding of this under-researched population and enhance the future trial design. This protocol describes the creation of a project-specific repository of individual participant data (IPD) from trials conducted in care homes and subsequent expansion into a legacy dataset for wider use, to address the need for accurate, high-quality IPD on this vulnerable population., Methods: Informed by scoping of relevant literature, the principal investigators of RCTs conducted in adult care homes in the UK since 2010 will be invited to contribute trial IPD. Contributing trialists will form a Steering Committee who will oversee data sharing and remain gatekeepers of their own trial's data. IPD will be cleaned and standardised in consultation with the Steering Committee for accuracy. Planned analyses include a comparison of pooled IPD with point estimates from administrative sources, to assess generalisability of RCT data to the wider care home population. We will also identify key resident characteristics and outcomes from within the trial repository, which will inform the development of a national minimum dataset for care homes. Following project completion, management will migrate to the Virtual Trials Archives, forming a legacy dataset which will be expanded to include international RCTs, and will be accessible to the wider research community for analyses., Discussion: Analysis of pooled IPD has the potential to inform and direct future practice, research and policy at low cost, enhancing the value of existing data and reducing research waste. We aim to create a permanent archive for care home trial data and welcome the contribution of emerging trial datasets.

Background: As part of the design process of a low-cost minimal-contact diabetes prevention intervention, we issued a blood glucose meter to people with impaired glucose regulation (who are at high risk of type 2 diabetes). We conducted a feasibility study to assess the acceptability of this intervention component and whether and how recipients engaged with it., Methods: A blood glucose meter was given to 19 people identified through primary care, who were asked to use the meter in an exploratory way during a 4-week trial period, to try to understand the effect of different foods on the body. They were advised that they could test as often or as little as they liked and were also asked to keep a food/exercise diary for at least 1 week. They were interviewed about their experiences afterwards., Results: There was a high level of engagement with testing, with the total number of tests recorded ranging from 11 to 114 (median 74) among 18 participants. Fifteen participants tested almost every day during the 4-week period. The cognitive engagement was more limited. All participants commented on their own results, and most were able to relate high or low results to foods eaten and exercise taken, usually in response to prompting. However, there was limited thought or understanding beyond this in terms of longer-term patterns of diet and exercise, and testing was routine rather than experimental. Some participants were confused by conflicting or unexpected results. A few minor problems were reported by participants, such as soreness, inconvenience, and difficulty in getting blood, but never enough to discontinue testing. Several participants stated that the meter was a useful aid as a reminder that they were at high risk of diabetes and served as a prompt that needed to make and/or maintain behaviour changes., Conclusions: The study suggests that blood glucose monitoring is acceptable to people with impaired glucose regulation and that they would engage with it as part of an intervention to improve their diet. The study has also uncovered potential mechanisms of action for behaviour change., Competing Interests: Approval to conduct the study was obtained from South East Scotland Research Ethics Committee (reference 17/SS/0133).N/AThe authors declare that they have no competing interests.Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Background: Matching animal movement with the behaviors that shape life history requires a rigorous connection between the observed patterns of space use and inferred behavioral states. As animal-borne dataloggers capture a greater diversity and frequency of three dimensional movements, we can increase the complexity of movement models describing animal behavior. One challenge in combining data streams is the different spatial and temporal frequency of observations. Nested movement models provide a flexible framework for gleaning data from long-duration, but temporally sparse, data sources., Results: Using a two-layer nested model, we combined geographic and vertical movement to infer traveling, foraging and resting behaviors of Humpback whales off the West Antarctic Peninsula. This approach refined previous work using only geographic data to delineate coarser behavioral states. Our results showed increased intensity in foraging activity in late season animals as the whales prepared to migrate north to tropical calving grounds. Our model also suggests strong diel variation in movement states, likely linked to daily changes in prey distribution., Conclusions: Using a combination of two-dimensional and three-dimensional movement data, we highlight the connection between whale movement and krill availability, as well as the complex spatial pattern of whale foraging in productive polar waters., Competing Interests: All animals were handled by experienced professionals under permits: NMFS 14907, 14,809, and 14,856, ACA Permits 2009–013 and 2015–011, Duke University IACUC A049–122-02 and OSU ACUP 4513.Not applicable.The authors declare no conflicts of information.Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Background: Socially disadvantaged men are at high risk of suffering from alcohol-related harm. Disadvantaged groups are less likely to engage with health promotion. There is a need for interventions that reach large numbers at low cost and which promote high levels of engagement with the behaviour change process. The aim of this study was to design a theoretically and empirically based text message intervention to reduce binge drinking by socially disadvantaged men., Results: Following MRC guidance, the intervention was developed in four stages. Stage 1 developed a detailed behaviour change strategy based on existing literature and theory from several areas. These included the psychological theory that would underpin the intervention, alcohol brief interventions, text message interventions, effective behaviour change techniques, narratives in behaviour change interventions and communication theory. In addition, formative research was carried out. A logic model was developed to depict the pathways between intervention inputs, processes and outcomes for behaviour change. Stage 2 created a narrative which illustrated and modelled key steps in the strategy. Stage 3 rendered the intervention into a series of text messages and ensured that appropriate behavioural change techniques were incorporated. Stage 4 revised the messages to ensure comprehensive coverage of the behaviour change strategy and coherence of the narrative. It also piloted the intervention and made final revisions to it., Conclusions: The structured, systematic approach to design created a narrative intervention which had a strong theoretical and empirical basis. The use of a narrative helped make the intervention realistic and allowed key behaviour change techniques to be modelled by characters. The narrative was intended to promote engagement with the intervention. The intervention was rendered into a series of short text messages, and subsequent piloting showed they were acceptable in the target group. Delivery of an intervention by text message offers a low-cost, low-demand method that can reach large numbers of people. This approach provides a framework for the design of behaviour change interventions which could be used for interventions to tackle other health behaviours., Competing Interests: The study was approved by the East of Scotland Research Ethics Service, project reference number 13/ES/0058.The authors declare that they have no competing interests.Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Background: Socially disadvantaged men are at a substantially higher risk of developing alcohol-related problems. The frequency of heavy drinking in a single session is high among disadvantaged men. Brief alcohol interventions were developed for, and are usually delivered in, healthcare settings. The group who binge drink most frequently, young to middle-aged disadvantaged men, have less contact with health services and there is a need for an alternative method of intervention delivery. Text messaging has been used successfully to modify other adverse health behaviours. This study will test whether text messages can reduce the frequency of binge drinking by disadvantaged men., Methods/design: Disadvantaged men aged 25 to 44 years who drank >8 units of alcohol at least twice in the preceding month will be recruited from the community. Two recruitment strategies will be used: contacting men listed in primary care registers, and a community outreach method (time-space sampling). The intended sample of 798 men will be randomised to intervention or control, stratifying by recruitment method. The intervention group will receive a series of text messages designed to reduce the frequency of binge drinking through the formation of specific action plans. The control group will receive behaviourally neutral text messages intended to promote retention in the study. The primary outcome measure is the proportion of men consuming >8 units on at least three occasions in the previous 30 days. Secondary outcomes include total alcohol consumption and the frequency of consuming more than 16 units of alcohol in one session in the previous month. Process measures, developed during a previous feasibility study, will monitor engagement with the key behaviour change components of the intervention. The study will incorporate an economic evaluation comparing the costs of recruitment and intervention delivery with the benefits of reduced alcohol-related harm., Discussion: This study will assess the effectiveness of a brief intervention, delivered by text messages, aimed at reducing the frequency of binge drinking in disadvantaged men. The process measures will identify components of the intervention which contribute to effectiveness. The study will also determine whether any benefit of the intervention is justified by the costs of intervening., Trial Registration: ISRCTN07695192. Date assigned: 14 August 2013.

Background: Having breakfast, eating food 'cooked from scratch' and eating together as a family have health and psychosocial benefits for young children. This study investigates how these parentally determined behaviours relate to children's dietary quality and uses a psychological model, the Theory of Planned Behaviour (TPB), to investigate socio-cognitive predictors of these behaviours in socially disadvantaged mothers of young children in Scotland., Method: Three hundred mothers of children aged 2 years (from 372 invited to participate, 81% response rate), recruited via General Practitioners, took part in home-based semi-structured interviews in a cross-sectional survey of maternal psychological factors related to their children's dietary quality. Regression analyses examined statistical predictors of maternal intentions and feeding behaviours., Results: Mothers of children with poorer quality diets were less likely than others to provide breakfast every day, cook from 'scratch' and provide 'proper sit-down meals'. TPB socio-cognitive factors (intentions, perceived behavioural control) significantly predicted these three behaviours, and attitudes, norms, and perceived behavioural control significantly predicted mothers' intentions, with medium to large effect sizes., Conclusions: Interventions to improve young children's dietary health could benefit from a focus on modifying maternal motivations and attitudes in attempts to improve feeding behaviours.

Background: Response rates in surveys have been falling over the last 20 years, leading to the need for novel approaches to enhance recruitment. This study describes strategies used to maximise recruitment to a home interview survey of mothers with young children living in areas of high deprivation., Methods: Mothers of two year old children received a letter from their GP inviting them to take part in a survey on diet. Participants were subsequently recruited by a researcher. The researcher first tried to contact potential participants by telephone, to discuss the study and make an appointment to conduct a home interview. Where telephone numbers for women could not be obtained from GP records, web searches of publicly available databases were conducted. After obtaining correct telephone numbers, up to six attempts were made to establish contact by telephone. If this was unsuccessful, a postal request for telephone contact was made. Where no telephone contact was achieved, the researcher sent up to two appointments by post to conduct a home interview., Results: Participating GPs invited 372 women to take part in a home based interview study. GP practices provided telephone numbers for 162 women, of which 134 were valid numbers. The researcher identified a further 187 numbers from electronic directories. Further searches of GP records by practice staff yielded another 38 telephone numbers. Thus, telephone numbers were obtained for 99% of potential participants.The recruitment rate from telephone contacts was 77%. Most of the gain was achieved within four calls. For the remaining women, contact by post and home visits resulted in 18 further interviews, corresponding to 35% of the women not recruited by telephone. The final interview rate was 82%. This was possible because personal contact was established with 95% of potential participants., Conclusion: This study achieved a high response rate in a hard to reach group. This was mainly achieved by first establishing contact by telephone. The use of multiple sources identified the telephone numbers of almost all the sample. Multiple attempts at telephone contact followed by postal approaches led to a high home interview rate.

Background: Low participation rates can lead to sampling bias, delays in completion and increased costs. Strategies to improve participation rates should address reasons for non-participation. However, most empirical research has focused on participants' motives rather than the reasons why non-participants refuse to take part. In this study we investigated the reasons why older people choose not to participate in a research project., Methods: Follow-up study of people living in Tayside, Scotland who had opted-out of a cross-sectional survey on activities in retirement. Eight hundred and eighty seven people aged 65-84 years were invited to take part in a home-based cross-sectional survey. Of these, 471 refused to take part. Permission was obtained to follow-up 417 of the refusers. Demographic characteristics of people who refused to take part and the reasons they gave for not taking part were collected., Results: 54% of those invited to take part in the original cross-sectional survey refused to do so. However, 61% of these individuals went on to participate in the follow-up study and provided reasons for their original refusal. For the vast majority of people initial non-participation did not reflect an objection to participating in research in principle but frequently stemmed from barriers or misunderstandings about the nature or process of the project itself. Only 28% indicated that they were "not interested in research". The meaningfulness of expressions of non-consent may therefore be called into question. Hierarchical log-linear modelling showed that refusal was independently influenced by age, gender and social class. However, this response pattern was different for the follow-up study in which reasons for non-participation in the first survey were sought. This difference in pattern and response rates supports the likely importance of recruitment issues that are research and context specific., Conclusion: An expression of non-consent does not necessarily mean that a fully informed evaluation of the pros and cons of participation and non-participation has taken place. The meaningfulness of expressions of non-consent may therefore be a cause for concern and should be subject to further research. Many reasons for non-participation may be specific to a particular research topic or population. Information sheets should reflect this by going beyond standardised guidelines for their design and instead proactively seek out and address areas of concern or potential misunderstanding. The use of established behavioural theory in their design could also be considered.