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BackgroundIn contrast to the use of traditional unidimensional paper-based scales, a mobile health (mHealth) assessment of pain in children and young people (CYP) with juvenile idiopathic arthritis (JIA) enables comprehensive and complex multidimensional pain data to be captured remotely by individuals. However, how professionals use multidimensional pain data to interpret and synthesize pain reports gathered using mHealth tools is not yet known. ObjectiveThe aim of this study was to explore the salience and prioritization of different mHealth pain features as interpreted by key stakeholders involved in research and management of pain in CYP with JIA. MethodsPain and rheumatology specialists were purposively recruited via professional organizations. Face-to-face focus groups were conducted for each specialist group. Participants were asked to rank order 9 static vignette scenarios created from real patient mHealth multidimensional pain data. These data had been collected by a researcher in a separate study using My Pain Tracker, a valid and acceptable mHealth iPad pain communication tool that collects information about intensity, severity, location, emotion, and pictorial pain qualities. In the focus groups, specialists discussed their decision-making processes behind each rank order in the focus groups. The total group rank ordering of vignette scenarios was calculated. Qualitative data from discussions were analyzed using latent thematic analysis. ResultsA total of 9 pain specialists took part in 1 focus group and 10 rheumatology specialists in another. In pain specialists, the consensus for the highest pain experience (44%) was poorer than their ranking of the lowest pain experiences (55%). Conversely, in rheumatology specialists, the consensus for the highest pain experience (70%) was stronger than their ranking of the lowest pain experience (50%). Pain intensity was a high priority for pain specialists, but rheumatology specialists gave high priority to intensity and severity taken together. Pain spread was highly prioritized, with the number of pain locations (particular areas or joints) being a high priority for both groups; radiating pain was a high priority for pain specialists only. Pain emotion was challenging for both groups and was only perceived to be a high priority when specialists had additional confirmatory evidence (such as information about pain interference or clinical observations) to validate the pain emotion report. Pain qualities such as particular word descriptors, use of the color red, and fire symbols were seen to be high priority by both groups in interpretation of CYP pain reports. ConclusionsPain interpretation is complex. Findings from this study of specialists’ decision-making processes indicate which aspects of pain are prioritized and weighted more heavily than others by those interpreting mHealth data. Findings are useful for developing electronic graphical summaries which assist specialists in interpreting patient-reported mHealth pain data more efficiently in clinical and research settings.

Personal and Professional Development (PPD) is now key to the undergraduate medical curriculum and requires provision of appropriate learning experiences. In order to achieve this, it is essential that we ascertain students' perceptions of what is important in their PPD. We required a methodological approach suitable for a large medical school, which defines constructs used by the students to describe their PPD, and is not constrained by a researcher's predetermined line of questioning. It should also quantify the saliencies of these constructs in the student population and indicate how they gauge their own PPD. The instrument should also be suitable for administration at key stages of the students' learning experience. Here we describe the first stages in developing a novel method, which fulfills these requirements. It is based on a modified self repertory grid, the "Ideal Self" Inventory. All first year students (N = 379), provided five descriptors of a "good medical student" and of a not very good medical student, which generated 1,531 "ideal" qualities. To define underlying themed constructs, 49 randomly selected descriptors, were grouped together by self selected students (n = 55), using commonly held assumptions. Frequency of item co-occurrence was tabulated by multidimensional scaling. Themed clusters of "ideal" qualities, defined by hierarchical cluster analysis, were overlaid onto the multidimensional scaling to generate a concept map. This revealed seven themed constructs; Personal Welfare, Time and Self Management Committed Work Ethic, Learning Skills, Personal Development/Reflection, Personal and Professional Conduct and Teamwork. We then analysed the 1,531 "ideal" qualities, by determining the frequency with which students used each construct and the proportion of students who used a construct at least once. Personal and Professional Conduct, Committed Work Ethic and Time and Self Management were the most frequently used, implying that they were the most salient for the first year students.

Objective To investigate changes in health-related quality of life (HRQoL) in children and young people with JIA (Juvenile Idiopathic Arthritis) over 3 years following diagnosis. Methods Data on children and young people recruited to the Childhood Arthritis Prospective Study (CAPS) were selected if >5 years of age at diagnosis. HRQoL was assessed at diagnosis (baseline), 1 year and 3 years using the proxy-reported Child Health Questionnaire (CHQ) completed by a parent or guardian. The CHQ measures aspects of HRQoL including physical functioning and mental health. Analyses included descriptive statistics, comparison with a US reference population and analysis of CHQ scores longitudinally and by gender and age of onset. Results Using CHQ data from parents/guardians of 182 CAPS study participants [median age 9.6 years (interquartile range 7.2–12.2)], all HRQoL domains significantly improved over the 3 year follow-up, except general health perceptions. Physical health domains showed greater improvement than psychosocial domains, although psychosocial scores were generally higher than physical scores throughout. Although similar at diagnosis, at 1 year females had significantly worse HRQoL than males in physical functioning (P  = 0.03), bodily pain (P  = 0.03), mental health (P  = 0.00), social-emotional (P  = 0.02) and social-physical (P  < 0.001). Differences largely remained at 3 years. Age at onset was not significantly associated with HRQoL. Conclusion Children and young people with JIA have low HRQoL across domains compared with the reference population. This improves within 3 years of diagnosis, with the greatest improvement within the first year. Early developmentally appropriate clinical intervention is recommended to reduce both psychosocial and physical impact of JIA. The lower HRQoL scores of females require further investigation. [ABSTRACT FROM AUTHOR]

Background: Pain communication should be an integral part of clinical consultations, particularly in paediatric rheumatology where children and adolescents frequently present with chronic musculoskeletal pain. To date, literature exploring the nature of and extent to which pain communication occurs has focused on healthcare professionals as respondents, yielding inconsistent and incomplete findings. The aim of this study was to explore children and adolescents' experiences of pain communication in the context of paediatric rheumatology consultations. Methods: Data were collected using semi‐structured telephone interviews with children and adolescents recruited from three tertiary paediatric rheumatology centres in the United Kingdom. A framework analysis approach was used to explore the similarities and divergences in participant accounts. Results: Twenty‐six children and adolescents (aged 6–18 years, median = 14, 58% female) participated. Diagnoses included: juvenile idiopathic arthritis, Chronic Idiopathic Pain Syndromes, Ehlers Danlos Syndrome/Hypermobility. Four themes were identified: (1) Co‐ordination of pain communication; (2) Barriers to pain communication; (3) Facilitators of pain communication; (4) Dissatisfaction with pain communication. These themes particularly encompassed the process of communication, disclosure of effective and ineffective approaches and the impact of communication. Participants expected questions about pain, felt cared about and found talking about pain natural. Challenges included augmenting the feeling of being different to peers and concerns about management plans changing as a result of pain conversations. Conclusions: Children and adolescents recalled a range of effective and ineffective pain communication approaches. Our study informs recommendations which highlight how healthcare professionals can improve their communication about pain with children and adolescents in the future. Significance: Our findings demonstrate that children and adolescents attending paediatric rheumatology expect to be and value being asked about their pain during consultations with healthcare professionals. Children and adolescents remember many of the processes involved, experiences of and the outcomes of pain communication. The current study reveals insights which can improve healthcare professional pain communication with children and adolescents. Our study introduces key recommendations for healthcare professionals to have more effective pain conversations in future. [ABSTRACT FROM AUTHOR]

The determinants and distribution of attitudes towards suicide prevention were investigated in four groups of health professionals who are in contact with suicidal patients: general practitioners; accident and emergency nurses; psychiatrists in training; and community psychiatric nurses. Attitudes were shown to differ significantly between professional groups. (BF)

The aim of the current study was to examine adolescents' goals when coping with pain and map these goals to the cognitive and emotional profiles of both adolescent and their parent. 17 adolescents (11‐16 years) and their parents participated in a cohort study of Juvenile Idiopathic Arthritis (JIA); the adolescents, took part in a two‐part interview (about their pain perceptions and about a recent pain experience) and the parents completed an open‐ended qualitative survey. The three datasets were analysed following a qualitative framework approach. A coping framework was developed and cognitive and emotional profiles for both adolescent and parent were mapped back to the framework. The overall goal of adolescents was to preserve social identity, by either focusing on maintaining a "normal" lifestyle (sub‐coping goal one) or managing the pain (sub‐coping goal two). Across these two sub‐coping goals, the adolescents held similar cognitive profiles (beliefs about timeline, consequences, control) but different emotional profiles such as feeling fine/happy compared with feeling angry and frustrated. Conversely, the parents' cognitive and emotional profiles were mapped back to the two groups and found that their beliefs were different across the two sub‐coping goals but had similar emotional profiles across the two groups such as worry. Both the adolescents' emotional representations and parental cognitive profiles seem to be related to how the adolescent perceives a pain event, deals with the pain, and the overall coping goal of the adolescent. Findings are suggestive that parental pain beliefs influence the adolescents' pain representations and their coping goals but are also driven by adolescents' emotions. Further work on these potential pathways is needed. Family interventions should be designed, targeting coping goals taking into consideration the importance of emotions for adolescents and parental pain beliefs. [ABSTRACT FROM AUTHOR]

This article provides an overview and application of Q-methodology for nursing researchers, with an illustration of its appropriate usage. Q-methodology has been identified as a method for the analysis of subjective viewpoints and has the strengths of both qualitative and quantitative methods. It shares with qualitative methodologies the aim of exploring subjectivity; however, statistical techniques are used to reveal the structure of views. This article describes the use of Q-methodology to examine subjectivity systematically, revealing connections between accounts that other techniques may overlook. An example from the literature is presented. Q-methodology is useful in qualitative nursing research concerned with the exploration and comparison of subjectivity and attitudes. It can be used to effectively identify attitudes, perceptions, feelings, and values as well as explore life experiences such as stress, self-esteem, body image, and satisfaction. Keywords: Q-methodology; Q-sort; qualitative study; analysis of subjectivity

With the most recent developments to the European General Data Protection Regulations (GDPR) introduced in May 2018, the resulting legislation meant a new set of considerations for study approvers and health‐care researchers. Compared with previous legislation in the UK (The Data Protection Act, 1998), it introduced more extensive and directive principles, requiring anybody 'processing' personal data to specifically define how this data will be obtained, stored, used and destroyed. Importantly, it also emphasised the principle of accountability, which meant that data controllers and processors could no longer just state that they planned to adhere to lawful data protection principles, they also had to demonstrate compliance. New questions and concerns around accountability now appear to have increased levels of scrutiny in all areas of information governance (IG), especially with regards to processing confidential patient information. This article explores our experiences of gaining required ethical and regulatory approvals for an ethnographic study in a UK health‐care setting, the implications that the common law duty of confidentiality had for this research, and the ways in which IG challenges were overcome. The purpose of this article was to equip researchers embarking on similar projects to be able to navigate the potentially problematic and complex journey to approval. [ABSTRACT FROM AUTHOR]