Ethical guidance for conducting health research with online communities: A scoping review of existing guidance.

Online research methods have grown in popularity due in part to the globalised and far-reaching nature of the internet but also linked to the Covid-19 pandemic whereby restrictions to travel and face to face contact necessitated a shift in methods of research recruitment and data collection. Ethical guidance exists to support researchers in conducting online research, however this is lacking within health fields. This scoping review aims to synthesise formal ethical guidance for applying online methods within health research as well as provide examples of where guidance has been used. A systematic search of literature was conducted, restricted to English language records between 2013 and 2022. Eligibility focused on whether the records were providing ethical guidance or recommendations, were situated or relevant to health disciplines, and involved the use or discussion of online research methods. Following exclusion of ineligible records and duplicate removal, three organisational ethical guidance and 24 research papers were charted and thematically analysed. Four key themes were identified within the guidance documents, 1) consent, 2) confidentiality and privacy, 3) protecting participants from harm and 4) protecting researchers from harm with the research papers describing additional context and understanding around these issues. The review identified that there are currently no specific guidelines aimed at health researchers, with the most cited guidance coming from broader methodological perspectives and disciplines or auxiliary fields. All guidance discussed each of the four key themes within the wider context of sensitive topics and vulnerable populations, areas and issues which are often prominent within health research thus highlighting the need for unifying guidance specific for health researchers. Further research should aim to understand better how online health studies apply ethical principles, to support in informing gaps across both research and guidance.

Utility of the Stanford Integrated Psychosocial Assessment for Transplant in predicting outcomes before and after lung transplantation.

BACKGROUND: Optimizing donor use and achieving maximal survival following lung transplantation (LTx) require a pretransplant assessment that identifies clinical, physiological, and psychosocial patient factors associated with both poor and optimal post-LTx survival. We examined the utility of a psychosocial tool, the Stanford Integrated Psychosocial Assessment for Transplant (SIPAT), to identify patient suitability for LTx, as well as its association with clinical outcomes before and after LTx. METHODS: This was a retrospective single-center study analyzing LTx assessment clinical variables (age, gender, diagnosis, functional capacity, nutrition, renal function), with a particular focus on the utility of the SIPAT score, to predict patient suitability for LTx. The same variables were analyzed against LTx waitlist mortality, as well as post-LTx survival. RESULTS: Over an 8-year period dating from December 2012, 914 patients (male 54.4%, mean age 55.2 years) underwent LTx assessment. Patients declined for LTx (n = 152, 16.6%) were older and had reduced functional capacity, nutritional markers, and renal function but had a higher SIPAT score. Once listed for LTx, a higher SIPAT score was not associated with waitlist mortality or reduced post-LTx survival. CONCLUSIONS: The SIPAT tool measures psychosocial suitability for transplantation that can be incorporated into a standardized assessment of LTx suitability. While patients with higher SIPAT score were more likely to be declined for LTx, the SIPAT score did not predict outcome in transplanted patients. A subgroup of patients with high SIPAT scores were successfully transplanted, suggesting that unfavorable psychosocial variables are potentially modifiable with a well-resourced multidisciplinary LTx team.

Achieving integrated treatment: a realist synthesis of service models and systems for co-existing serious mental health and substance use conditions.

Approximately 30-50% of people with serious mental illness have co-existing drug or alcohol problems (COSMHAD), associated with adverse health and social care outcomes. UK guidelines advocate both co-occurring needs being met within mental health services, but uncertainty remains about how to operationalise this to improve outcomes. Various unevaluated service configurations exist in the UK. A realist synthesis was done to identify, test, and refine programme theories of how context shapes the mechanisms through which UK service models for COSMHAD work, for whom, and in what circumstances. Structured and iterative realist searches of seven databases identified 5099 records. A two-stage screening process identified 132 papers. Three broad contextual factors shaped COSMHAD services across 11 programme theories: committed leadership, clear expectations regarding COSMHAD from mental health and substance use workforces, and clear care-coordination processes. These contextual factors led to increased staff empathy, confidence, legitimisation, and multidisciplinary ethos, which improved care coordination and increased the motivation of people with COSMHAD to work towards their goals. Our synthesis highlights that integrating COSMHAD care is complex, and both individual and cultural behavioural shifts in leadership, workforce, and service delivery are essential to ensure people with COSMHAD receive compassionate, trauma-informed care that meets their needs.

Parents' experiences and perceptions of the acceptability of a whole-hospital, pro-active electronic pediatric early warning system (the DETECT study): A qualitative interview study.

Background: Failure to recognize and respond to clinical deterioration in a timely and effective manner is an urgent safety concern, driving the need for early identification systems to be embedded in the care of children in hospital. Pediatric early warning systems (PEWS) or PEW scores alert health professionals (HPs) to signs of deterioration, trigger a review and escalate care as needed. PEW scoring allows HPs to record a child's vital signs and other key data including parent concern. Aim: This study aimed to explore the experiences and perceptions of parents about the acceptability of a newly implemented electronic surveillance system (the DETECT surveillance system), and factors that influenced acceptability and their awareness around signs of clinical deterioration and raising concern. Methods: Descriptive, qualitative semi-structured telephone interviews were undertaken with parents of children who had experienced a critical deterioration event (CDE) (n = 19) and parents of those who had not experienced a CDE (non-CDE parents) (n = 17). Data were collected between February 2020 and February 2021. Results: Qualitative data were analyzed using generic thematic analysis. Analysis revealed an overarching theme of trust as a key factor that underpinned all aspects of children's vital signs being recorded and monitored. The main themes reflect three domains of parents' trust: trust in themselves, trust in the HPs, and trust in the technology. Conclusion: Parents' experiences and perceptions of the acceptability of a whole-hospital, pro-active electronic pediatric early warning system (The DETECT system) were positive; they found it acceptable and welcomed the use of new technology to support the care of their child.

Clinical utility and acceptability of a whole-hospital, pro-active electronic paediatric early warning system (the DETECT study): A prospective e-survey of parents and health professionals.

BACKGROUND: Paediatric early warning systems (PEWS) are a means of tracking physiological state and alerting healthcare professionals about signs of deterioration, triggering a clinical review and/or escalation of care of children. A proactive end-to-end deterioration solution (the DETECT surveillance system) with an embedded e-PEWS that included sepsis screening was introduced across a tertiary children's hospital. One component of the implementation programme was a sub-study to determine an understanding of the DETECT e-PEWS in terms of its clinical utility and its acceptability. AIM: This study aimed to examine how parents and health professionals view and engage with the DETECT e-PEWS apps, with a particular focus on its clinical utility and its acceptability. METHOD: A prospective, closed (tick box or sliding scale) and open (text based) question, e-survey of parents (n = 137) and health professionals (n = 151) with experience of DETECT e-PEWS. Data were collected between February 2020 and February 2021. RESULTS: Quantitative data were analysed using descriptive and inferential statistics and qualitative data with generic thematic analysis. Overall, both clinical utility and acceptability (across seven constructs) were high across both stakeholder groups although some challenges to utility (e.g., sensitivity of triggers within specific patient populations) and acceptability (e.g., burden related to having to carry extra technology) were identified. CONCLUSION: Despite the multifaceted nature of the intervention and the complexity of implementation across a hospital, the system demonstrated clinical utility and acceptability across two key groups of stakeholders: parents and health professionals.

Health professionals' initial experiences and perceptions of the acceptability of a whole-hospital, pro-active electronic paediatric early warning system (the DETECT study): a qualitative interview study.

BACKGROUND: Paediatric early warning systems (PEWS) alert health professionals to signs of a child's deterioration with the intention of triggering an urgent review and escalating care. They can reduce unplanned critical care transfer, cardiac arrest, and death. Electronic systems may be superior to paper-based systems. The objective of the study was to critically explore the initial experiences and perceptions of health professionals about the acceptability of DETECT e-PEWS, and what factors influence its acceptability. METHODS: A descriptive qualitative study (part of The DETECT study) was undertaken February 2020-2021. Single, semi-structured telephone interviews were used. The setting was a tertiary children's hospital, UK. The participants were health professionals working in study setting and using DETECT e-PEWS. Sampling was undertaken using a mix of convenience and snowballing techniques. Participants represented two user-groups: 'documenting vital signs' (D-VS) and 'responding to vital signs' (R-VS). Perceptions of clinical utility and acceptability of DETECT e-PEWS were derived from thematic analysis of transcripts. RESULTS: Fourteen HPs (12 nurses, 2 doctors) participated; seven in D-VS and seven in the R-VS group. Three main themes were identified: complying with DETECT e-PEWS, circumventing DETECT e-PEWS, and disregarding DETECT e-PEWS. Overall clinical utility and acceptability were deemed good for HPs in the D-VS group but there was diversity in perception in the R-VS group (nurses found it more acceptable than doctors). Compliance was better in the D-VS group where use of DETECT e-PEWS was mandated and used more consistently. Some health professionals circumvented DETECT e-PEWS and fell back into old habits. Doctors (R-VS) did not consistently engage with DETECT e-PEWS, which reduced the acceptability of the system, even in those who thought the system brought benefits. CONCLUSIONS: Speed and accuracy of real-time data, automation of triggering alerts and improved situational awareness were key factors that contributed to the acceptability of DETECT e-PEWS. Mandating use of both recording and responding aspects of DETECT e-PEWS is needed to ensure full implementation.

Children and young people's contributions to public involvement and engagement activities in health-related research: A scoping review.

BACKGROUND: There has been an increasing interest in how children and young people can be involved in patient and public involvement and engagement (PPIE) in health research. However, relatively little robust evidence exists about which children and young people are reported as being involved or excluded from PPIE; the methods reported as being used to involve them in PPIE; and the reasons presented for their involvement in PPIE and what happens as a result. We performed a scoping review to identify, synthesise and present what is known from the literature about patient and public involvement and engagement activities with children and young people in health related research. METHODS: Relevant studies were identified by searches in Scopus, Medline, CINAHL, Cochrane and PsychInfo databases, and hand checking of reference lists and grey literature. An adapted version of the Guidance for Reporting Involvement of Patients and the Public (GRIPP2) was used as a framework to collate the data. Two reviewers independently screened articles and decisions were consensually made. MAIN FINDINGS: A total of 9805 references were identified (after duplicates were removed) through the literature search, of which 233 full-text articles were assessed for eligibility. Forty studies published between 2000 and 2019 were included in the review. The review reveals ambiguities in the quality of reporting of PPIE with children with clear reporting on demographics and health conditions. The review found that children and young people were commonly involved in multiple stages of research but there was also significant variation in the level at which children and young people were involved in PPIE. Evaluation of the impact of children and young people's involvement in PPIE was limited. CONCLUSIONS: Consultation, engagement and participation can all offer children and young people worthwhile ways of contributing to research with the level, purpose and impact of involvement determined by the children and young people themselves. However, careful decisions need to be made to ensure that it is suited to the context, setting and focus so that the desired PPIE impacts are achieved. Improvements should be made to the evaluation and reporting of PPIE in research. This will help researchers and funders to better understand the benefits, challenges and impact of PPIE with children and young people on health research.

How nurses use reassurance to support the management of acute and chronic pain in children and young people: An exploratory, interpretative qualitative study.

Reassurance in the context of pediatric pain is regarded to promote distress. Typically, spoken reassurance is reported as short, generic statements ("it's ok," "don't worry"); little research has considered wider reassuring behaviors and actions undertaken by nurses. Most studies focus on unidirectional, dyadic relationships between reassurance and pain (parent-to-child, professional-to-child) failing to capture the inherent complexities. Adopting an exploratory, interpretative, and qualitative approach, this paper reports on findings from the qualitative interview component of a mixed-methods study, concerning how nurses actively use reassurance when talking to children and their parents about pain. Eighteen nurses with experience of managing children's pain were recruited on completion of an international online survey (distributed by pain and children's nursing networks and via newsletter, email, and social media). All 18 nurses completed a semi-structured interview concerning their experiences of managing children's pain working in the UK (n = 14), Canada (n = 3), and Australia (n = 1) in primary, secondary, and tertiary settings with nursing experience ranging from pre-qualification to >20 years. Thematic analysis generated three themes which reflect the main ways in which nurses focus their reassurance within encounters with children and their parent(s): (a) on child and parent(s), (b) on the child, and (c) on the parent. Nurses generated reassurance using language, gesture, relationship building, individualizing approaches, education, and preparation. The study highlights the diversity of reassurance provided by nurses in relation to children's pain. Our study finds that when nurses reassure children about pain, they focus their reassurance in three distinct directions (child, parents, and children and parents in partnership); this has not been specifically acknowledged by previous research. We highlight the wide range of implicit and explicit reassurance actions undertaken by nurses and propose that reassurance that extends beyond limited vocalizations is part of a complex package of care that can support children's current and future pain experiences.

Young People's Experiences and Perceptions of YouTuber-Produced Health Content: Implications for Health Promotion.

The growing diversity and uptake of social media has increased the sources of health information available to young people. YouTube is one of the most popular social media platforms for young people in the United Kingdom, and YouTubers are the most important influencers on the platform producing diverse health content. They are increasingly recognized by popular media and public health organizations as a potentially influential source of health information for young people. This study aimed to qualitatively explore young people's experiences and perceptions of YouTuber health content. Focus groups (November 2017 to January 2018) with 85 young people (13-18 years) were recruited from schools in a single county in North West England. The findings suggest young people's engagement with YouTuber health content is dependent on how they encounter it, YouTubers' motivations for producing it, and the perceived relatability, sincerity, and generalization present in this content. The study confirms YouTuber health content was one of the many sources of health information used by young people and was most frequently encountered during young people's routine viewing. Collaboration between public health organizations and YouTubers could be promising in communicating health messages to young people already engaged with these YouTubers, as part of wider campaigns or interventions. These messages could be particularly effective if they focused on experiences and norms rather than advice, remained consistent with YouTubers' existing health content, incorporate clear indicators of accuracy into their narrative, and state their intention to benefit young people.

A systematic review of the organizational, environmental, professional and child and family factors influencing the timing of admission to hospital for children with serious infectious illness.

BACKGROUND: Infection, particularly in the first 5 years of life, is a major cause of childhood deaths globally, many deaths from infections such as pneumonia and meningococcal disease are avoidable, if treated in time. Some factors that contribute to morbidity and mortality can be modified. These include organisational and environmental factors as well as those related to the child, family or professional. OBJECTIVE: Examine what organizational and environmental factors and individual child, family and professional factors affect timing of admission to hospital for children with a serious infectious illness. DESIGN: Systematic review. DATA SOURCES: Key search terms were identified and used to search CINAHL Plus, Medline, ASSIA, Web of Science, The Cochrane Library, Joanna Briggs Institute Database of Systematic Review. STUDY APPRAISAL METHODS: Primary research (e.g. quantitative, qualitative and mixed methods studies) and literature reviews (e.g., systematic, scoping and narrative) were included if participants included or were restricted to children under 5 years of age with serious infectious illnesses, included parents and/or first contact health care professionals in primary care, urgent and emergency care and where the research had been conducted in OECD high income countries. The Mixed Methods Appraisal Tool was used to review the methodological quality of the studies. MAIN FINDINGS: Thirty-six papers were selected for full text review; 12 studies fitted the inclusion criteria. Factors influencing the timing of admission to hospital included the variability in children's illness trajectories and pathways to hospital, parental recognition of symptoms and clinicians non-recognition of illness severity, parental help-seeking behaviour and clinician responses, access to services, use and non-use of 'gut feeling' by clinicians, and sub-optimal management within primary, secondary and tertiary services. CONCLUSIONS: The pathways taken by children with a serious infectious illness to hospital are complex and influenced by a variety of potentially modifiable individual, organisational, environmental and contextual factors. Supportive, accessible, respectful services that provide continuity, clear communication, advice and safety-netting are important as is improved training for clinicians and a mandate to attend to 'gut feeling'. IMPLICATIONS: Relatively simple interventions such as improved communication have the potential to improve the quality of care and reduce morbidity and mortality in children with a serious infectious illness.

Welsh Primary Schoolchildren's Perceptions of Electronic Cigarettes: A Mixed Methods Study.

There are concerns that the growing popularity of e-cigarettes promotes experimentation among children. Given the influence of the early years on attitude and habit formation, better understanding of how younger children perceive vaping before experimentation begins is needed, to prevent uptake and inform tobacco control strategies. We explored Welsh primary schoolchildren's (aged 7-11) awareness of e-cigarettes relative to tobacco smoking, their understanding of the perceived risks and benefits and their intentions and beliefs about vaping. Data was collected using a mix of methods in June and July 2017 from 8 purposively selected primary schools across Wales. Four hundred and ninety-five children (52% female) aged 7 years (n = 165), 9 years (n = 185) and 11 years (n = 145) completed a class-administered booklet encompassing a draw and write exercise and survey. Ninety-six children participated in 24 peer discussion groups comprised of 2 boys and 2 girls from each year group. Data were analysed independently and findings triangulated. Survey analyses used frequencies, descriptive statistics and chi-squared tests. Content analysis was undertaken on the draw and write data and peer discussion groups were analysed thematically. Study findings highlight that primary schoolchildren have general awareness of e-cigarettes. Vaping was perceived to be healthier than smoking and there was some recognition that e-cigarettes were used for smoking cessation. Understanding of any health harms was limited. Few children intended to smoke or vape in the future but almost half thought it was okay for grownups. Children's perceptions were influenced by exposure through family and friends. Findings suggest a need for e-cigarette education in primary schools, to highlight the associated risks of e-cigarette experimentation including the potential for tobacco initiation.

Opt-Out Parental Consent in Online Surveys: Ethical Considerations.

This article aims to foster discussion and debate around seeking parental consent from young people recruited online. The growth of social media, particularly for young people, has led to increased interest in young people's online activities as both a research topic and recruitment setting. In a health-related study, which sought to recruit young people aged 13 to 18 years old from YouTuber fan communities to an online survey, the question arose of how parental consent could be sought from young people below 16 when no link existed between researcher and parents/guardians. A practical strategy is proposed which combines novel communication methods for participant information, opt-out online consent and age verification to address this issue. Strengths and limitations of these approaches are discussed.

Identification of the Gender-Specific Health Needs of Women Following Lung Transplantation.

BACKGROUND: Little is known of the prevalence and severity of menstrual dysfunction, climacteric symptoms, pelvic floor disorders, sexual problems, and psychological wellbeing after lung transplantation in women. MATERIALS AND METHODS: Adult female lung transplant recipients, attending the Alfred Hospital Lung Transplant Service in Melbourne, Australia participated in a women's health, cross-sectional questionnaire-based study. RESULTS: The 123 of 149 potential participants were recruited between September 2014 and July 2015. Their median age was 53.5 years, and 44 were premenopausal, 3 perimenopausal, and 76 postmenopausal. Moderate-severe menstrual and premenstrual symptoms were common, and 43% of partnered premenopausal women were not using contraception. Vasomotor symptoms (VMS) were common in postmenopausal women <55 years (80.0%), and the use of menopausal hormone therapy was low (8.9%). The estimated prevalence of low sexual desire associated with distress was 24.4%. Low wellbeing was significantly and independently associated with being aged 50 ≤ 60 years, moderate-severe VMS, impaired forced expiratory volume in 1 second, and psychotropic medication use. CONCLUSIONS: Our findings demonstrate that premenopausal lung transplant recipients need to be asked about bothersome menstrual symptoms, and contraceptive compliance needs regular review. Transplant recipients at midlife have substantially lower wellbeing than women of other ages and this needs attention, including assessment and management of menopausal symptoms.

Why Should We Use Online Research Methods? Four Doctoral Health Student Perspectives.

The growth of the Internet has led to an increase in researchers utilizing online methods. Online communities such as forums, blogs, and video platforms are particularly useful for research involving populations that are Internet savvy, seldom heard or discussing sensitive or illicit behavior. Drawing upon the experiences of four doctoral health students who are using online methods, this article discusses the value and benefits of conducting online research as well as the limitations and difficulties encountered. Consideration is given to the methodological and ethical implications of online research. Our own research leads us to reflect on participants' perceptions of what is public, preserving anonymity and protecting participants from harm.

"Always paracetamol, they give them paracetamol for everything": a qualitative study examining Eastern European migrants' experiences of the UK health service.

BACKGROUND: The enlargement of the European Union since 2004 has led to an increase in the number of Eastern European migrants living in the UK. The health of this group is under-researched though some mixed evidence shows they are at higher risk of certain physical health conditions such as heart attacks, strokes, HIV and alcohol use and have poorer mental health. This is compounded by poor or insecure housing, low pay, isolation and prejudice. We aimed to understand the health needs and health service experiences of the Eastern European population in a town in Northern England. METHODS: Five semi structured one-to-one and small group interviews and five focus groups were conducted with 42 Eastern European participants between June and September 2014. The majority of participants were Polish and other participants were from Belarus, Hungary, Latvia, Russia, Slovakia and Ukraine. The data were analysed using thematic framework analysis. RESULTS: Key findings included a good understanding the UK health service structure and high registration and use of general practice/primary care services. However, overall, there were high levels of dissatisfaction, frustration and distrust in General Practitioners (GP). The majority of participants viewed the GP as unhelpful and dismissive; a barrier to secondary/acute care; reluctant to prescribe antibiotics; and that GPs too often advised them to take paracetamol (acetaminophen) and rest. CONCLUSIONS: Overwhelmingly participants had strong opinions about access to primary care and the role of the general practitioners. Although the design of the UK health service was well understood, participants were unhappy with the system of GP as gatekeeper and felt it inferior to the consumer-focused health systems in their country of origin. More work is needed to promote the importance of self-care, reduce antibiotic and medication use, and to increase trust in the GP.

Predictors of employment participation following lung transplant.

BACKGROUND/AIM: Limited information about return to productive activities after lung transplantation has been published. The purpose of our study was to identify issues relating to occupational engagement in employment after surgery. METHOD: We conducted a cross-sectional study of surviving lung transplant recipients from one transplant service in Australia. We used descriptive statistics, chi-square tests and Cox regression to analyse the data. RESULTS: A total of 100 lung transplant recipients completed the assessment (83.3% of 120 eligible surviving recipients). The mean age of respondents was 50 ± 13 years; 45% of the sample were men. Cystic fibrosis and chronic obstructive pulmonary disease were the most frequent pre-transplant diagnoses. Fifty-five percent of participants identified employment or alternate occupational engagement prior to transplant. Of those respondents who had not retired from work prior to transplant, 44.2% identified engagement in paid employment after transplantation. Participants who obtained paid employment post-transplantation were more likely to have completed high school (P = 0.05) or worked as managers (P < 0.0001). CONCLUSION: Occupational therapists should be actively involved in pre- and post-transplantation goal setting and intervention to support return to work. Pre-transplant, participation in any amount of voluntary or paid employment or study will maintain networks, skills, and confidence. Post-transplant, while physician encouragement is known as a key predictor of return to work, occupational therapist support can address function and activity components of work participation.

Comparing subjective well-being and health-related quality of life of Australian drug users in treatment in regional and rural Victoria.

INTRODUCTION AND AIMS: The aim of this study is to examine the self-reported subjective well-being and health-related quality of life (HRQOL) of alcohol and other drug users and to examine whether subjective well-being in this sample would be predicted by either HRQOL and/or severity of dependence. DESIGN AND METHODS: A cross-sectional survey was conducted of 201 Victorian substance users in individual targeted outpatient treatment for a variety of types of substance use. Participants were administered an interview, including the personal well-being index, the SF-8 health survey and the severity of dependence scale, in order to assess subjective well-being, the mental health component of HRQOL and severity of drug dependence respectively. RESULTS: Subjective well-being was predicted by mental health aspects of HRQOL (sr(2) = 0.03) and by employment (sr(2) = 0.05), rather than by severity of dependence [F(5, 146) = 5.60, P < 0.001, R(2) = 0.14]. DISCUSSION AND CONCLUSIONS: The current sample of urban and regional substance users in outpatient treatment shows poorer levels of subjective well-being than do the general population. Subjective well-being was predicted by mental aspects of HRQOL and not by severity of drug dependence or by physical aspects of HRQOL. Treatment which aims to improve substance users' well-being should include mental health interventions and pathways to employment.

Interpreting seventeenth-century probate documents: John Carter, master carpenter in St Albans.

This is a study of a successful seventeenth-century carpenter in St Albans, John Carter, using probate and other documents, assisted by a large-scale computer database of St Albans residents of the period. Sections of the article cover his family, his work and his house and its contents, which have been reconstructed from his probate inventory and from knowledge of the structure of other local houses of the period. Carter's social standing is discussed, both in its local context and in relation to previous probate inventory analyses. This micro-study sheds unusual light upon aspects of the life of a 'middling sort' of person, living in a thriving market town in close proximity to London, at the beginning of the consumer age.