How parents share and limit their child's access to information about COVID-19: A mixed methods online survey study.

This study aimed to understand the role that parents play in sharing or limiting their child's access to information about coronavirus disease 2019 (COVID-19). A subset of data from an international mixed methods online survey study was analysed to elucidate the findings from Brazil. An online survey, conducted between April and June 2020, gathered closed and open text views from parents of children aged 7-12 years old. Quantitative data were analysed using descriptive statistics. Qualitative open text data were analysed using the three stages of the Bardin content analysis framework: pre-analysis (data organisation and initial full-content reading); exploration of the material (thematic coding to identify major motifs and develop thematic categories) and interpretation (treating the data as significant and valid). The sample consisted of 112 (89%) mothers and 14 (11%) fathers. The analysis of the parents open text resulted in two categories: 'How parents share information with their children about COVID-19' and 'How parents limit information to their children about COVID-19'. Some parents reported adopting an honest and open approach on how they shared information with their children, whilst some parents chose to minimise their child's access to information about the pandemic over concerns of the mortality related to COVID-19.

The diagnostic experience for people with MND and their caregivers in the U.K.

OBJECTIVE: How an MND diagnosis is communicated has implications for how individuals adapt to their illness. The consultation process with the neurologist, diagnosis delivery, and adherence to UK guidelines, were explored from the perspectives of people diagnosed with MND and family caregivers. METHODS: A cross-sectional approach with people with MND and their caregivers in UK. An anonymous online survey, based on the SPIKES protocol for delivering bad news and containing questions focusing on the UK NICE MND guideline, was distributed in 2018-19. RESULTS: 69 people with MND and 39 caregivers responded. People with MND were more likely than caregivers to rate highly their neurologist's skills and ability and their satisfaction with delivery of the diagnosis. The amount of time spent with the neurologist at diagnosis had an impact on the level of satisfaction and rating of the neurologist's skills and abilities. The SPIKES criteria were generally not met. Many of the NICE MND guideline recommendations were not met, though adherence was greater in MND Centres. CONCLUSIONS: While there is evidence of satisfaction with the delivery of the diagnosis amongst people with MND and caregivers, there is room for improvement. There is a need for greater awareness of the requirements of people with MND and caregivers. There is also a need to raise awareness of the NICE MND guideline and ensure adequate training, time and funding to ensure communication at this difficult time is acceptable and effective. Where possible it would be preferable for referrals to be made to MND centres.

How children in Sweden accessed and perceived information during the first phase of the Covid-19 pandemic.

AIM: To describe how children in Sweden accessed and perceived information about SARS-CoV2 and Covid-19 during the first phase of the outbreak. METHODS: This study is a substudy of an international cross-sectional online mixed methods survey examining elements of children's health literacy in relation to Covid-19. The survey included multiple-choice questions, open-ended questions and drawings and collected information from 50 Swedish children (7-12 years). Data were analysed concurrently on a descriptive level using statistics and content analysis. Quantitative and qualitative data, including the drawings, were considered equally important and resulted in six categories, illuminating how children accessed and perceived information about the pandemic. RESULTS: The survey showed that children accessed information mainly from school but also from TV. They preferred information from reliable sources. Children reported the information they accessed as easy to understand and it prompted them to ask new questions. They reported they knew a lot about the pandemic, for example, the potential danger to themselves and others and how to act to protect themselves and others. They perceived the pandemic as an intrusion on their lives. CONCLUSIONS: This study indicates that Swedish children between 7 and 12 years old were well informed about SARS-CoV2 and Covid-19 during the first phase of the pandemic. School was shown to be an important source of information. The children could explain how to act to protect themselves and others from becoming infected by the virus.

"People play it down and tell me it can't kill people, but I know people are dying each day". Children's health literacy relating to a global pandemic (COVID-19); an international cross sectional study.

The aim of this study was to examine aspects of children's health literacy; the information sources they were accessing, their information preferences, their perceived understanding of and their reported information needs in relation to COVID-19. An online survey for children aged 7-12 years of age and parent/caregivers from the UK, Sweden, Brazil, Spain, Canada and Australia was conducted between 6th of April and the 1st of June 2020. The surveys included demographic questions and both closed and open questions focussing on access to and understanding of COVID-19 information. Descriptive statistics and qualitative content analysis procedures were conducted. The findings show that parents are the main source of information for children during the pandemic in most countries (89%, n = 347), except in Sweden where school was the main source of information. However, in many cases parents chose to shield, filter or adapt their child's access to information about COVID-19, especially in relation to the death rates within each country. Despite this, children in this study reported knowing that COVID-19 was deadly and spreads quickly. This paper argues for a community rather than individual approach to addressing children's health literacy needs during a pandemic.

A study of childhood cancer survivors' engagement with long-term follow-up care: 'To attend or not to attend, that is the question'.

PURPOSE: In the UK, there are over 40,000 childhood cancer survivors (CCS); this figure grows approximately 1300 annually. Two-thirds are at risk of developing serious disabling or life-threatening conditions due to adverse late effects of the cancer or treatment received in childhood. Life-long, follow-up care for the surveillance and management of late effects is recommended. This study explored CCS' views and experiences of long-term follow-up (LTFU) care within a cancer centre. METHODS: Paper questionnaires (n = 113) and qualitative interviews (n = 13). RESULTS: The majority (n = 83, 80%) of CCS reported being satisfied with their LTFU care and felt that it was important to attend long-term survivorship follow-up (n = 97, 86%). However, some were not well informed about their cancer treatment history, purpose for attending the clinic or the potential for late effects. Barriers associated with LTFU included; provision of information, lack of interpersonal relationships, practical and logistic challenges. CONCLUSIONS: Barriers identified can be addressed through strategies including provision of verbal and written information and care plans to increase CCS' knowledge of their cancer history, risk of late effects and the purpose of LTFU care, both at transition and throughout their survivorship journey; patient-centred services that enhance patient choice and flexibility of access to multiple specialities; and use of risk stratified pathways to encourage supported self-management based on cancer type, co-morbidity, and level of professional involvement required. Improving regular provision of information at critical time-points, and exploring a flexible, patient-centred delivery of LFTU care based on risk, could increase attendance and self-management in CCS.

Ability of the wider dental team to triage patients with acute conditions: a qualitative study.

Objectives To understand the attitudes, skills and knowledge of dental reception and practice management teams relating to urgent dental appointments and to identify additional training needs.Methods Two focus groups were held with members of dental practice reception and management teams (n = 15). Thematic analysis of the focus group transcripts identified topics, and these were explored in more detail through semi-structured interviews with focus group members (n = 5).Results Approaches to triaging people with acute dental problems varied in relation to individual skills and practice policies/ethos. Balancing the needs and desires of patients, dentists and other members of the dental team was challenging. Helpful practices included: dedicated appointment slots for unscheduled patients and a system of feedback between clinical and non-clinical teams. Formal training for new members of the frontline team, especially those without a clinical background, could include: assessing/interpreting symptoms, managing diary pressures and dealing with patient expectations/conflict.Conclusions Receptionists and practice managers have an important role to play in unscheduled dental care. Improved training to undertake this role should help ensure the safety of patients with acute dental problems whilst also optimising the efficient day-to-day running of the practice.

A Network Approach to Neonatal Palliative Care Education: Impact on Knowledge, Efficacy, and Clinical Practice.

More than 80 000 babies are admitted to specialist neonatal units in the United Kingdom every year, with approximately 2109 neonatal deaths a year; 98% in hospital. A common element in guidance and pathways to facilitate the provision of palliative care to infants and their families is the importance of good education and training to develop high-quality staff and services. This article presents a mixed-methods, sequential, explanatory design evaluation of 1 day palliative care education workshops delivered using a network-wide approach to multidisciplinary professionals. Workshops were delivered by healthcare professionals and bereaved parents and evaluated using questionnaires, adapted for neonatal staff from standardized measures, and follow-up interviews. The workshop content and shared learning approach resulted in significant improvements in participant's knowledge, attitude, self-beliefs and confidence in neonatal palliative care, enhanced awareness of services, and improved links between professionals. Participants cascaded their learning to their teams and provided examples of changes in their clinical practice following the workshop. Parent stories were identified as a very powerful component of the training, with lasting impact on participants. Formal, integrated palliative care education programs for perinatal and neonatal staff and longitudinal research into the impact on practice and the experience received by families are needed.

Student nurse non-attendance in relation to academic performance and progression.

BACKGROUND: High levels of non-attendance are reported in nurse education programmes even though literal interpretation of UK national guidelines implies mandatory student attendance is a requirement for all elements of pre-registration undergraduate programmes. OBJECTIVES: To examine relationships between undergraduate student nurse non-attendance, academic performance and progression. DESIGN: A quantitative study using audit approaches was undertaken. PARTICIPANTS: The records of 1347 undergraduate student nurses who had studied at a university in the north west of England were analysed. METHODS: Following data coding and input into an SPSS database descriptive and chi-square analyses were conducted to explore the associations between non-attendance rates and age, sex, entry qualifications, year of study and degree classification. RESULTS: The characteristics of the sample were that the majority were female, aged under 21years and had 'A' level entry qualifications. Significant chi-square associations were found in regard of age at entry and entry qualifications with degree classification. Significant chi-square associations were also identified between degree classification and non-attendance across all three years of the programme. CONCLUSIONS: The findings that non-attendance is positively associated with degree outcome across all the three years of study are in keeping with the findings of several studies. Many of these findings will help inform future student attendance policies where the study was conducted and are insightful for other national and international institutions that offer nurse education programmes.

An evaluation of National Health Service England's Care Maker Programme: A mixed-methods analysis.

AIMS AND OBJECTIVES: To investigate the impact and sustainability of the Care Maker programme across England from the perspective of those involved in its delivery. BACKGROUND: The Care Maker programme was launched in England in 2013. It aims to support the "Compassion in Practice" strategy, with particular emphasis on the 6Cs of care, compassion, competence, communication, courage and commitment. Care Makers were recruited in an ambassadorial role. The intention was to inspire individuals throughout the National Health Service in England to bridge national policy with those delivering care. DESIGN: A mixed methods design was chosen, but this article focuses on two of the four distinct empirical data collection phases undertaken as part of this evaluation: a questionnaire with Care Makers; and two case studies of separate National Health Service trust sites. METHOD: Data were collected for this evaluation in 2015. An online questionnaire was distributed to the total population of Care Makers across the National Health Service in England. It included a combination of open and closed questions. The case studies involved semistructured telephone interviews with a range of professionals engaged with the Care Maker programme across the trust sites. RESULTS: Care Makers reported that participation in the programme had offered opportunities in terms of improving the quality-of-care provision in the workplace as well as contributing towards their own professional development. CONCLUSION: The Care Maker programme has supported and helped underpin the nursing, midwifery and care strategy "Compassion in Practice". RELEVANCE TO CLINICAL PRACTICE: This model of using volunteers to embed strategy and policy could potentially be used in other areas of clinical practice and indeed in other countries.

Improving end of life care in care homes; an evaluation of the six steps to success programme.

BACKGROUND: There are approximately 426,000 people residing within care homes in the UK. Residents often have complex trajectories of dying, which make it difficult for staff to manage their end-of-life care. There is growing recognition for the need to support care homes staff in the care of these residents with increased educational initiatives. One educational initiative is The Six Steps to Success programme. METHOD: In order to evaluate the implementation of Six Steps with the first cohort of care homes to complete the end-of-life programme in the North West of England., a pragmatic evaluation methodology was implemented in 2012-2013 using multiple methods of qualitative data collection; online questionnaire with facilitators (n = 16), interviews with facilitators (n = 9) and case studies of care homes that had completed the programme (n = 6). The evaluation explored the implementation approach and experiences of the programme facilitators and obtain a detailed account of the impact of Six Steps on individual care homes. Based upon the National Health Service (NHS) End of Life Care (EoLC) Programme, The Route to Success in EoLC - Achieving Quality in Care Homes. RESULTS: The programme was flexibly designed so that it could be individually tailored to the geographical location and the individual cohort requirements. Facilitators provided comprehensive and flexible support to care homes. Challenges to programme success were noted as; lack of time allocated to champions to devote to additional programme work, inappropriate staff selected as 'Champions' and staff sickness/high staff turnover presented challenges to embedding programme values. Benefits to completing the programme were noted as; improvement in Advance Care Planning, improved staff communication/confidence when dealing with multi-disciplinary teams, improved end-of-life processes/documentation and increased staff confidence through acquisition of new knowledge and new processes. CONCLUSIONS: The findings suggested an overall positive impact from the programme. This flexibly designed programme continues to be dynamic, iteratively amended and improved which may affect the direct transferability of the results to future cohorts.

Development of a Rheumatology-specific Patient Concerns Inventory and Its Use in the Rheumatology Outpatient Clinic Setting.

OBJECTIVE: Successful management of rheumatic conditions involves increasing complexity of care. Delivering this in a holistic way is a growing challenge. The aim of our study was to develop a Patient Concerns Inventory (PCI) and assess it in the rheumatology clinic setting. METHODS: This observational exploratory study occurred with 2 phases. In phase I, the PCI was developed after a systematic literature search, expert opinion, and 3 patient focus group discussions. In phase II, the PCI was piloted in a general rheumatology clinic. RESULTS: Fifty-four patients were assessed in the pre-PCI group and 51 in the post-PCI group. Median (IQR) duration of consultation was 8 min (5-14) without PCI and 15 min (10-20) with PCI. The pre-PCI group raised 335 concerns from 50 patients, median (IQR) of 5 (3-10) per patient, rising post-PCI to 521 concerns, median (IQR) of 9 (5-16) from 51 patients, p = 0.002. Additional concerns predominantly arose from "physical and functional well-being" and "social care and well-being" domains. Most patients rated their experience with their doctor in the consultation as excellent or outstanding across all 11 questions in the questionnaire, both before and after the introduction of the PCI to the clinic setting. CONCLUSION: The PCI is a useful holistic needs assessment tool for rheumatology clinics. Although its use may initially prolong the consultation slightly, patients can raise a significantly higher number of concerns, which does not occur at the expense of patient satisfaction. This may help in identifying areas of unmet needs that previously went unnoticed.

Delivering compassionate care: the enablers and barriers.

The importance of providing compassionate care to patients is well established. While compassionate care can be understood as an individual response to others' vulnerability, it is acknowledged that healthcare environments can impact significantly on this aspect of practice. This study sought to explore how health professionals and pre-qualifying healthcare students (HCS) understand compassionate care and factors that hinder or enable them to practice compassionately. The perceptions of health professionals (n=146) and HCS (n=166) registered at a university in Northwest England were explored using mixed methods. This article reports on the data gained from the qualitative interviews and responses to open-text questions from the mainly quantitative questionnaire. The findings are discussed under the following themes: individual and relationship factors that impact on compassionate care practice; organisational factors that impact on the clinical environment and team; and leadership factors that hinder or enable a compassionate care culture. This article argues that there are a number of enabling factors that enhance a culture conducive to providing compassionate care. These include leaders who act as positive role models, good relationships between team members and a focus on staff wellbeing.

Issues concerning recruitment, retention and attrition of student nurses in the 1950/60s: a comparative study.

AIM: To investigate student nurse recruitment and attrition in the 1950' and 1960s and undertake comparisons to modern day concerns. The study was set in one hospital in the U.K. BACKGROUND: In the period studied nursing was unpopular as a profession and there were difficulties surrounding recruitment. Attrition rates were high. METHOD: Documentary analysis of 641 training records dating 1955 to 1968 was undertaken. Attrition rates, reasons for non-completion and employment following successful completion were determined. RESULTS: Most recruits were young, unmarried, females and had overseas addresses. The majority (n = 88) had prior nursing experience. Over 69% (n = 443) successfully completed their training. Attrition rates were over 30% (n = 198), the main reason being academic failure. Following completion over 40% (n = 183) undertook midwifery training (n = 183) or secured a staff nurse post (n = 153). CONCLUSIONS: Issues relating to recruitment, retention and attrition in the 1950s and 1960s put into context present day issues. Recent attrition rates from pre-registration nurse education have fallen, nevertheless some of the issues of yesteryear remain problematic. In the present study significant numbers of entrants left due to domestic and ill-health problems resonates with many modern day studies. Also failure to complete due to academic shortcomings continues to be a concern.

The role of professional education in developing compassionate practitioners: a mixed methods study exploring the perceptions xof health professionals and pre-registration students.

Compassionate practice is a public expectation and a core health professional value. However, in the face of growing public and professional unease about a perceived absence of compassion in health care it is essential that the role of education in developing compassionate practitioners is fully understood. The aim of this study was to explore qualified health professionals' and pre-registration students' understanding of compassion and the role of health professional education in promoting compassionate care. A sequential explanatory mixed methods study collected data using surveys and qualitative semi-structured interviews from qualified health professionals (n=155) and pre-registration students (n=197). Participants were from a range of health and social care disciplines and registered at a UK university. The findings indicate a high level of consensus in relation to participants' understanding of compassion in health care. Acting with warmth and empathy, providing individualised patient care and acting in a way you would like others to act towards you, were seen as the most common features of compassionate care. However, ambiguities and contradictions were evident when considering the role of health professional education in promoting compassionate practice. This study adds to the debate and current understanding of the role of education in fostering compassionate health care practice.

Enhancing communication with distressed patients, families and colleagues: the value of the Simple Skills Secrets model of communication for the nursing and healthcare workforce.

BACKGROUND: Good communication skills in healthcare professionals are acknowledged as a core competency. The consequences of poor communication are well-recognised with far reaching costs including; reduced treatment compliance, higher psychological morbidity, incorrect or delayed diagnoses, and increased complaints. The Simple Skills Secrets is a visual, easily memorised, model of communication for healthcare staff to respond to the distress or unanswerable questions of patients, families and colleagues. OBJECTIVES: To explore the impact of the Simple Skills Secrets model of communication training on the general healthcare workforce. DESIGN AND METHODS: An evaluation methodology encompassing a quantitative pre- and post-course testing of confidence and willingness to have conversations with distressed patients, carers and colleagues and qualitative semi-structured telephone interviews with participants 6-8 weeks post course. PARTICIPANTS: During the evaluation, 153 staff undertook the training of which 149 completed the pre- and post-training questionnaire. A purposive sampling approach was adopted for the follow up qualitative interviews and 14 agreed to participate. RESULTS: There is a statistically significant improvement in both willingness and confidence for all categories; (overall confidence score, t(148)=-15.607, p=<0.05 overall willingness score, t(148)=-10.878, p=<0.05) with the greatest improvement in confidence in communicating with carers (pre-course mean 6.171 to post course mean 8.171). There is no statistical significant difference between the registered and support staff. Several themes were obtained from the qualitative data, including: a method of communicating differently, a structured approach, thinking differently and additional skills. The value of the model in clinical practice was reported. CONCLUSION: This model can be suggested as increasing the confidence of staff, in dealing with a myriad of situations which, if handled appropriately can lead to increased patient and carers' satisfaction. Empowering staff appears to have increased their willingness to undertake these conversations, which could lead to earlier intervention and minimise distress.

The training needs and career intentions of staff grade and associate specialist doctors.

This article outlines the results of a study which used an online survey to explore the career intentions of staff grade and associate specialist doctors in one region and their training needs to inform those managing the continued professional development of staff grade and associate specialist doctors.

Why do students fail to disclose health problems?

BACKGROUND: At the university where this study took place, pre-qualifying healthcare students had previously been enrolled on programmes and were found to have pre-existing and ongoing health problems, which caused difficulties for some students during clinical placements. AIM: To develop a web-based information zone dealing with students' concerns about fitness-to-practise issues. METHOD: A three-stage study involving an online student survey, in-depth student interviews and development of a university web-based information zone was carried out. RESULTS: The web zone's content is based on key areas of importance identified by students who participated in the study. CONCLUSION: Early indications show that prospective and current students regularly use the web zone, demonstrated by the number of site hits.

A study identifying the difficulties healthcare students have in their role as a healthcare student when they are also an informal carer.

There is a growing body of literature concerning the needs of informal carers, however, there is little relating to the needs of carers who are also university students. There are a number of publications concerning the difficulties university studies may cause and in particular the stress that some healthcare students endures when they undertake clinical placements. Being an informal carer has the potential to aggravate any difficulties students may have in the normal course of their studies. The purpose of the study was to explore the experiences and needs of healthcare students who are also informal carers. An electronic survey (February 2010) of 3567 students identified 36 students who are also informal carers. Most were female, pre-registration nursing students, studying full-time and who cared for their physically disabled children, chronically ill parents or terminally ill grandparents. Most respondents spent over 6h a day on informal caring responsibilities. The majority said informal caring had a negative impact on their studies. An in-depth interview study was undertaken (April 2010) with ten students. Data themes identified in the analysis were; descriptions of being an informal carer, impact of caring on studying, sources of support and hidden lives. In the theme 'hidden lives' students highlighted that they did not want university staff to know that they were informal carers as they did not want 'special' treatment. It was theorised that this could be due to the stigmatisation sometimes attached to being a carer. The value of the study was that it was found that more targeted information about student support services is needed, to help students successfully complete their studies. This would be beneficial for universities too as students who leave early without successfully completing their programme have financial implications.

Care of patients with neurological conditions: the impact of a Generic Neurology Nursing Service development on patients and their carers.

AIMS AND OBJECTIVES: The aim of this study was to explore patients and carers views and experiences of the impact of the Generic Neurology Nursing Service. BACKGROUND: Neurological conditions are a major cause of disability and are estimated to affect up to one billion people worldwide. It is clear that this number is set to rise as the world's population is ageing. Although there are established disease specific neurological specialist nursing services that have been reported as benefitting patients and carers, not all neurological patients are captured in these services. To address this deficit and to provide a rapidly accessible service the Generic Neurology Service was established. DESIGN: A qualitative study using joint and one to one semi structured interviews. A purposive sample of 20 patients and carers participated in the study. RESULTS: Two broad themes emerged which are inextricably linked: longer consultation times and the benefit of seeing a knowledgeable specialist nurse. CONCLUSIONS: The respondents in this study reported the benefits of a longer consultation time coupled with the opportunity to talk freely about their symptoms and to ask more questions. All the patients and carers interviewed in this study were satisfied with the care provided by the Generic Neurology Nurse Service, with the majority highlighting improvements it has made in their lives. RELEVANCE TO CLINICAL PRACTICE: This study has shown how a novel approach to service design and delivery can help to bridge the gap in the provision of a bespoke service for patients with a neurological condition who currently are receiving sub optimal care. Having a service that patients can rapidly access can be suggested as preventing clinical emergencies, maintaining patients' self management and resulting in care of the level of the best.

The personal value of being a palliative care Community Volunteer Worker in Uganda: a qualitative study.

BACKGROUND: Volunteers in palliative care play a key role, particularly in the hospice setting. The expansion of palliative care into developing countries has been accompanied by the emergence of volunteer workers, who are providing a main source of support and care for patients, many of whom never see a health professional. AIM: The aim of this study was to evaluate the motivation for becoming a volunteer and the personal impact of being a palliative care Community Volunteer Worker in Uganda. DESIGN: A qualitative methodology using semi-structured individual and group digitally recorded interviews was adopted for the study. Data were analysed for emerging themes using thematic analysis. SETTING/PARTICIPANTS: Forty-three interviews were undertaken, 32 with Community Volunteer Workers and 11 with the Hospice clinical teams, using semi-structured digitally recorded individual, group and focus group interviews at the Hospice Africa sites in Uganda. RESULTS: The results identified the cultural wish to help people as a key motivator in becoming a volunteer. Additionally, the volunteers reported having a sense of pride in their volunteering role, and this role had a positive impact on their perceived status in their local community. CONCLUSION: This model of volunteering is clearly having an impact on the volunteers, both personally and also in terms of how they are treated in their communities. Further research to explore the long-term personal benefits of being a palliative care volunteer is recommended.