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Mothers often make key decisions regarding their children's health. They hold core beliefs and attitudes towards healthcare providers, relying on healthcare services to provide support, advice and reassurance. It is crucial that health providers form authentic relationships with families with young children, in order to effectively provide healthcare, support and information as needed. In this paper, we explore mothers' views on the accessibility and expertise of healthcare professionals caring for their child's health. A case study, using a geographic post code as the case boundary was used. Focus groups and semi‐structured interviews with mothers of children aged under five years old were conducted. Participants (n = 33) were recruited from local playgroups and six focus groups (19 participants) and 14 individual interviews were conducted. Qualitative data were analysed using thematic analysis. General Practice (including general practitioners [GPs] and practice nurses) was considered to be the preferred option when seeking timely healthcare advice and information. Participant mothers were open to accessing professional advice concerning their child's health, from a range of health professionals and understood the role and potential contribution of various health professionals. However, some factors, influenced mothers' decision‐making. These were captured in three themes: maternal perceptions of GPs as accessible experts; practice nurses as approachable and reassuring sources of advice; and difficulty in accessing health visiting services primarily due to service funding cuts. Further investment in primary care services, including expansion of the practice nurse role and an increase in health visiting service provision, may help to provide sufficient support for mothers seeking healthcare advice. In addition, healthcare service strategies, which engage with mothers and ensure nurses are recognised as knowledgeable, accessible, supportive and a suitable alternative to GPs, would be beneficial. [ABSTRACT FROM AUTHOR]

Background: Limited access to, understanding of, and trust in paper-based patient information is a key factor influencing paramedic decisions to transfer patients nearing end-of-life to hospital. Practical solutions to this problem are rarely examined in research. This paper explores the extent to which access to, and quality of, patient information affects the care paramedics provide to patients nearing end-of-life, and their views on a shared electronic record as a means of accessing up-to-date patient information. Method: Semi-structured interviews with paramedics (n = 10) based in the north of England, drawn from a group of health and social care professionals (n = 61) participating in a study exploring data recording and sharing practices in end-of-life care. Data were analysed using thematic analysis. Results: Two key themes were identified regarding paramedic views of patient information: 1) access to information on patients nearing end-of-life, and 2) views on the proposed EPaCCS. Paramedics reported they are typically unable to access up-to-date patient information, particularly advance care planning documents, and consequently often feel they have little option but to actively treat and transport patients to hospital – a decision not always appropriate for, or desired by, the patient. While paramedics acknowledged a shared electronic record (such as EPaCCs) could support them to provide community-based care where desired and appropriate, numerous practical and technical issues must be overcome to ensure the successful implementation of such a record. Conclusions: Access to up-to-date patient information is a barrier to paramedics delivering appropriate end-of-life care. Current approaches to information recording are often inconsistent, inaccurate, and inaccessible to paramedics. Whilst a shared electronic record may provide paramedics with greater and timelier access to patient information, meaning they are better able to facilitate community-based care, this is only one of a series of improvements required to enable this to become routine practice. [ABSTRACT FROM AUTHOR]

Objectives: To explore the experiences, acceptability and utility of a decision aid for family carers of people with dementia towards the end of life. Methods: We conducted semi‐structured interviews with a sample of family carers enroled into a 6‐month feasibility study in England, sampling to gain a range of experiences and views, based on relationship to person they cared for (e.g., spouse, adult child), age, gender, and self‐reported use of the decision aid during the feasibility study. Interviews were conducted in March 2021–July 2021 and analysed using reflexive thematic analysis. We used COREQ checklist to report our methods and results. Results: Family carers found the decision aid acceptable, describing it as comprehensive, accessible with relevant information and its presentation enabled good engagement. Experiences of the decision aid covered four main themes which demonstrated the perceived acceptability and utility: 1. A source of support and reassurance; 2. Empowering conversations and confidence; 3. Including the person living with dementia; and 4. Breaking down complexity. Conclusions: An aid focussing on decisions about dementia end of life care supported family carers break down complex and emotive decisions, not only with making decisions in the moment but also in future planning. Patient or Public Contribution: Our three Patient and Public Involvement (PPI) members (all former family carers) were crucial throughout the wider study. PPI supported development of the topic guides, supported trialling the topic guide and interview procedures and finally supported the development of themes as part of the analysis. [ABSTRACT FROM AUTHOR]

This paper explores how disabled adults and older people find and use information to help make choices about services. It presents findings from a qualitative longitudinal study in England. Thirty participants had support needs that fluctuated, meaning that additional services might be needed on a temporary basis; and 20 had the sudden onset of support needs resulting from an accident or rapid deterioration in health. Each disabled adult or older person was interviewed three times between 2007 and 2009, using a semi-structured topic guide. They were asked to discuss a recent choice about services, focussing, amongst other things, on their use of information. Interviews were transcribed and coded, then charted according to emergent themes. A wide range of choices and sources of information were discussed. These were dominated by health and to some extent by social care. Key findings are that information was valuable not just in weighing up different service options, but as a precondition for such choices, and that disabled adults and older people with the gradual onset of support needs and no prior knowledge about services can be disadvantaged by their lack of access to relevant information at this pre-choice stage. Timely access to information was also important, especially for people without the support of emergency or crisis management teams. Healthcare professionals were trusted sources of information but direct payment advisers appeared less so. Ensuring that practitioners are confident in their knowledge of direct payments, and have the communication skills to impart that knowledge, is essential. There may be a role also for specialist information advocates or expert lay-advisers in enabling disabled adults and older people to access and consider information about choices at relevant times. [ABSTRACT FROM AUTHOR]

Introduction: Remote home monitoring models were implemented during the COVID‐19 pandemic to shorten hospital length of stay, reduce unnecessary hospital admission, readmission and infection and appropriately escalate care. Within these models, patients are asked to take and record readings and escalate care if advised. There is limited evidence on how patients and carers experience these services. This study aimed to evaluate patient experiences of, and engagement with, remote home monitoring models for COVID‐19. Methods: A rapid mixed‐methods study was carried out in England (conducted from March to June 2021). We remotely conducted a cross‐sectional survey and semi‐structured interviews with patients and carers. Interview findings were summarized using rapid assessment procedures sheets and data were grouped into themes (using thematic analysis). Survey data were analysed using descriptive statistics. Results: We received 1069 surveys (18% response rate) and conducted interviews with patients (n = 59) or their carers (n = 3). 'Care' relied on support from staff members and family/friends. Patients and carers reported positive experiences and felt that the service and human contact reassured them and was easy to engage with. Yet, some patients and carers identified problems with engagement (e.g., hesitancy to self‐escalate care). Engagement was influenced by patient factors such as health and knowledge, support from family/friends and staff, availability and ease of use of informational and material resources (e.g., equipment) and service factors. Conclusion: Remote home monitoring models place responsibility on patients to self‐manage symptoms in partnership with staff; yet, many patients required support and preferred human contact (especially for identifying problems). Caring burden and experiences of those living alone and barriers to engagement should be considered when designing and implementing remote home monitoring services. Patient or Public Contribution: The study team met with service users and public members of the evaluation teams throughout the project in a series of workshops. Workshops informed study design, data collection tools and data interpretation and were conducted to also discuss study dissemination. Public patient involvement (PPI) members helped to pilot patient surveys and interview guides with the research team. Some members of the public also piloted the patient survey. Members of the PPI group were given the opportunity to comment on the manuscript, and the manuscript was amended accordingly. [ABSTRACT FROM AUTHOR]

Objective: To improve patient experience of chemotherapy‐induced peripheral neuropathy (CIPN), it is crucial to identify how patients develop their understanding and perception of CIPN. A wider understanding of the experiences of clinicians who provide CIPN information and support is also needed. This study explored clinician and patient experience of the provision of care, information and support for CIPN. Methods: Data were collected between July and November 2019 using multiple qualitative methods. Non‐participant observations were undertaken in colorectal and breast cancer clinics and at clinician stations, including the observation of chemotherapy consultations between patients and clinicians. Semi‐structured interviews with people with cancer and clinicians were also conducted. Data were analysed using inductive reflexive thematic analysis. Results: Three major themes emerged: (1) CIPN is a hidden chemotherapy side effect, (2) assessment and management of CIPN is disconnected and (3) patients and clinicians expect openness in CIPN symptom reporting, information provision and management. Conclusion: Findings show the need to address the lack of patients' overall familiarity with CIPN. Echoing earlier studies, our findings suggest that knowledge and understanding about CIPN among clinicians are limited or lacking. These insights from patient and clinicians' CIPN experiences can inform future interventions that may address the genuine needs of patients and enhance CIPN support. [ABSTRACT FROM AUTHOR]

Allied health professionals (AHPs) working with children need the appropriate knowledge, skills and experiences to provide high‐quality care. This includes using research to drive improvements in care and ensuring that knowledge and practices are consistent and build upon the best available evidence. The aim of this work was to understand more about the shared behaviours and opinions of health professionals supporting children's foot health care; how they find information that is both relevant to their clinical practice as well as informing the advice they share. A qualitative design using semi‐structured, one‐to‐one, telephone interviews with AHPs was adopted. Thematic analysis was used to generate meaning, identify patterns and develop themes from the data. Eight interviews were conducted with physiotherapists, podiatrists and orthotists. Five themes were identified relating to health professionals: (a) Engaging with research; (b) Power of experience; (c) Influence of children's footwear companies; (d). Dr Google – the new expert and (e) Referral pathways for children's foot care. The findings indicate that the AHPs adopted a number of strategies to develop and inform their own professional knowledge and clinical practice. There could be barriers to accessing information, particularly in areas where there is limited understanding or gaps in research. The availability of online foot health information was inconsistent and could impact on how AHPs were able to engage with parents during consultations. [ABSTRACT FROM AUTHOR]

In this era of 'big data', there is growing recognition of the value of environmental, health, social and demographic data for research. Open government data initiatives are growing in number and in terms of content. Remote sensing data are finding widespread use in environmental research, including in low- and middle-income settings. While our ability to study environment and health associations across countries and continents grows, data protection rules and greater patient control over the use of their data present new challenges to using health data in research. Innovative tools that circumvent the need for the physical sharing of data by supporting non-disclosive sharing of information, or that permit spatial analysis without researchers needing access to underlying patient data can be used to support analyses while protecting data confidentiality. User-friendly visualizations, allowing small-area data to be seen and understood by non-expert audiences, are revolutionizing public and researcher interactions with data. The UK Small Area Health Statistics Unit's Environment and Health Atlas for England and Wales, and the US National Environmental Public Health Tracking Network offer good examples. Open data facilitates user-generated outputs, and 'mash-ups', and user-generated inputs from social media, mobile devices and wearable tech are new data streams that will find utility in future studies, and bring novel dimensions with respect to ethical use of small-area data. [ABSTRACT FROM AUTHOR]

Straightforward transfer of care from pregnancy to the postpartum period is associated with health benefits and is desired by women worldwide. Underpinning this transfer of care is the sharing of information between healthcare professionals and the provision of consistent information to women. In this qualitative study, two aspects of continuity of information were examined; first the information passed on from midwife to health visitor regarding a woman and her baby before the health visitor meets the woman postnatally and second, the consistency of information received by women from these two healthcare professionals (the main healthcare providers during and after pregnancy in England). To be eligible for the study, women had to have had a baby in England within 12 months prior to the interview. Participants also needed to be able to read and speak English and be over 18 years old. Recruitment of participants was via word of mouth and social media. Twenty‐nine mothers were interviewed of whom 19 were first time mothers. The interviews took place in the summer and autumn of 2016 and were transcribed verbatim and analysed using Framework Analysis. Two overarching themes were identified: not feeling listened to and information inconsistencies. Women reported little experience of midwives and health visitors sharing information about their care, forcing women to repeat information. This made women feel not listened to and participants recommended that healthcare professionals share information; prioritising information about labour, mental health, and chronic conditions. Women had mixed experiences regarding receiving information from midwives and health visitors, with examples of both consistent and inconsistent information received. To avoid inconsistent information, joint appointments were recommended. Findings from this study clearly suggest that better communication pathways need to be developed and effectively implemented for midwives and health visitors to improve the care that they provide to women. [ABSTRACT FROM AUTHOR]

Background: There is currently little patient information on bronchiectasis, a chronic lung disease with rising prevalence. Previous work shows that patients and their families want more information, which could potentially improve their understanding and self-management. Using interviews and focus groups, we have co-developed a novel patient and carer information resource, aiming to meet their identified needs. The aims and objectives are: 1. To assess the potential impact of the information resource 2. To evaluate and refine the intervention 3. To establish the feasibility of carrying out a multi-centre randomised controlled trial to determine its effect on understanding, self-management and health outcomesMethods/design: This is a feasibility study, with a single-centre, randomised controlled trial design, comparing use of a novel patient information resource to usual care in bronchiectasis. Additionally, patients and carers will be invited to focus groups to discuss their views on both the intervention itself and the trial process. The study duration for each participant will be 3 months from the study entry date. A total of 70 patients will be recruited to the study, and a minimum of 30 will be randomised to each arm. Ten participants (and their carers if applicable) will be invited to attend focus groups on completion of the study visits. Participants will be adults with bronchiectasis diagnosed as per national bronchiectasis guidelines. Once consented, participants will be randomised to the intervention or control arm using random permuted blocks to ensure treatment group numbers are evenly balanced. Randomisation will be web-based. Those randomised to the intervention will receive the information resource (website and booklet) and instructions on its use. Outcome measures (resource satisfaction, resource use and alternative information seeking, quality of life questionnaires, unscheduled healthcare visits, exacerbation frequency, bronchiectasis knowledge questionnaire and lung function tests) will be recorded at baseline, 2 weeks and 3 months.Discussion: All outcome measures will be used in assessing feasibility and acceptability of a future definitive trial. Feasibility outcomes include recruitment, retention and study scale form completion rates. Focus groups will strengthen qualitative data for resource refinement and to identify participant views on the trial process, which will also inform feasibility assessments. Questionnaires will also be used to evaluate and refine the resource.Trial Registration: ISRCTN84229105. [ABSTRACT FROM AUTHOR]

Background: Anxiety and depression are common in older adults, but often under-recognised by GPs. Rather than perceiving themselves as suffering from anxiety or depression, older adults are more likely to self-identify as experiencing low mood, stress or distress. Older people may also feel responsible for managing their own mood problems. The Internet has the potential to support the self-management of distress through accessing health information or social support. Methods: This study was approved by Keele University's ethical review panel. Older adults who self-identified as experiencing distress were recruited from community groups in the West Midlands, England. To generate data, 'think-aloud' methods (including storyboards and an extract from an online forum) were embedded within semi-structured interviews. Thematic analysis, incorporating constant comparison methods, were used for data analysis. Results: Data saturation was achieved after 18 interviews. All participants reported having access to the Internet, but only a few described using the Internet to obtain general information or to conduct online purchases. Most participants described barriers to Internet use which included: a lack of interest, knowledge and confidence, a fear of technology and no trust in social media sites. Facilitators of Internet use included family encouragement and attending community groups which taught computer use. Female participants reported valuing the social contact provided by attending such groups. The Internet was seen as a source of health information once a GP had diagnosed a physical problem, but was not considered a source of information about distress or mood problems. Participants did not use the Internet to access social support and described a preference for face-to-face communication. Conclusions: GPs need to understand how an individual patient utilises the Internet. GPs should explore the self-management strategies already employed by older adults experiencing distress and understand that directing these older people to online support might not be acceptable. Encouraging distressed older adults to attend computer group classes might be useful as this permits face-to-face social contact, and may help to facilitate Internet use in the future. [ABSTRACT FROM AUTHOR]