Use of a reference group in researching children’s views of psychotherapy in Malta

This paper explores the process and outcomes of a children’s reference group within the context of child psychotherapy research in residential care. The reference group was set up to consult children about the design of a research project which seeks to evoke, represent and understand children’s views of psychotherapy. No work to date has explored the experience of reference groups in the context of child psychotherapy in residential care in Malta. The paper contextualises the research within the literature on reference groups in child research, which identifies the potential of reference groups as a participative and co-reflexive activity which can inform research design. The paper critically examines the nature and conduct of the reference group by acknowledging the specific context of this work rather than assuming this is necessarily positive. It does so by specifying and evaluating the outcomes of the reference group in line with its aims. The paper draws on the recordings of the reference group meetings and reference group field notes taken by the researcher as key data which were thematically analysed. The main outcomes of the reference group include children’s contribution to the design of data collection methods especially in terms of not relying only on words during data collection. Children also identified key ethical issues from the point of view of young psychotherapy service users, especially in relation to issues of trust within a residential care context. Children also reviewed and appraised research information material. The reference group process drew from the researcher’s and participants’ contexts and contributed significantly to the researcher’s reflexive process especially in terms of acknowledging his power and positioning as an adult and his dual role as a practitioner/researcher

Research into the views of two child reference groups on the arts in research concerning wellbeing

Introduction: This paper explores an aspect of the process and outcomes of two children’s reference groups: the ways the young members of the reference groups consider the role of the arts in research concerning wellbeing. Methods: Two case studies draw on qualitative data from the projects offering insight into child reference group work over the life of a research project: from recommendations to implementation. Results: The findings demonstrate that both reference groups enabled the research to achieve a fuller engagement with meaning making in relation to data collection by consulting with children. Conclusion: The data reveal how the members offered “insider knowledge” to the researchers concerning the role of the arts in research concerning wellbeing. Themes within the analysis about the impact of the reference group’s knowledge and recommendations on the research project’s data collection methods include the role of the arts connected to empathy, safety and confidentiality and in relation to difference and choice

Reflective practice and participant involvement in research

This article discusses the relationships between reflective practice and research for professionals who are research participants. It offers an analysis of the opportunities for reflective practice created for participants through their involvement in research. Three examples of research into professional’s perspectives on practice with children in Chile, Malta and Cyprus are presented and analysed. The analysis of the three examples shows the role research can have in creating particular kinds of spaces and relationships that facilitate reflection and how it can introduce dimensions that are normally excluded from critical reflection within a profession. The examples show this as involving: reparative and augmented critical reflection; new information and meaning making and the interactions between macro, meso and micro perspectives

Child agency and therapy in primary school

The article reports on, and analyses, qualitative research involving children’s therapy in two primary school contexts in England. It aims to explore the potentials of how agency as a concept can contribute to a challenge to existing theory, research and ways of working concerning therapy in primary school contexts. The article addresses how this challenge can be theorised: drawing on a critical review of how the fields of health, therapy, education and child rights connect to concepts of agency. Themes within this review include different disciplinary paradigms of childhood; how concepts of agency relate to those of child rights and voice; how a field such as therapy, created around concepts of welfare, can shift to acknowledge the presence of a child rights framework; and the complexities of child agency in therapy within primary school contexts. Data are included from the authors’ research projects that access children’s views of their therapy and that engages with them through a questionnaire, a member checking group and as co-researchers into their experiences of therapy. The analysis of the data reveals the challenges, potentials and advantages of recognising and listening to children as ‘active agents’ and ‘experts’ in relation to their therapy

Mutation and drug-specific intracellular accumulation of EGFR predict clinical responses to tyrosine kinase inhibitors

Background: Clinical responses to EGFR tyrosine kinase inhibitors (TKIs) are restricted to tumors harboring specific activating mutations and even then, not all tyrosine kinase inhibitors provide clinical benefit. All TKIs however, effectively inhibit EGFR phosphorylation regardless of the mutation present. Methods: High-throughput, high-content imaging analysis, western blot, Reversed phase protein arrays, mass spectrometry and RT-qPCR. Findings: We show that the addition of TKIs results in a strong and rapid intracellular accumulation of EGFR. This accumulation mimicked clinical efficacy as it was observed only in the context of the combination of a TKI-sensitive mutation with a clinically effective (type I) TKI. Intracellular accumulation of EGFR was able to predict response to gefitinib in a panel of cell-lines with different EGFR mutations. Our assay also predicted clinical benefit to EGFR TKIs on a cohort of pulmonary adenocarcinoma patients (hazard ratio 0.21, P=0.0004 [Cox proportional hazard model]) and could predict the clinical response in patients harboring rare mutations with unknown TKI-sensitivity. All investigated TKIs, regardless of clinical efficacy, inhibited EGFR phosphorylation and downstream pathway activation, irrespective of the mutation present. Intracellular accumulation of EGFR depended on a continued presence of TKI indicating (type I) TKIs remain associated with the protein even after its dephosphorylation. Accumulation therefore is likely caused by two consecutive conformational changes, induced by both activating mutation and TKI, that combined block EGFR-membrane recycling. Interpretation: We report on an assay that mimics the discrepancy between molecular and clinical activity of EGFR-TKIs, which may allow response prediction in vitro and helps understand the mechanism of effective inhibitors

Systematic evaluation of patient-reported outcome (PRO) protocol content and reporting in UK cancer clinical trials: the EPiC study protocol.

Emerging evidence suggests that patient-reported outcome (PRO)-specific information may be omitted in trial protocols and that PRO results are poorly reported, limiting the use of PRO data to inform cancer care. This study aims to evaluate the standards of PRO-specific content in UK cancer trial protocols and their arising publications and to highlight examples of best-practice PRO protocol content and reporting where they occur. The objective of this study is to determine if these early findings are generalisable to UK cancer trials, and if so, how best we can bring about future improvements in clinical trials methodology to enhance the way PROs are assessed, managed and reported.Trials in which the primary end point is based on a PRO will have more complete PRO protocol and publication components than trials in which PROs are secondary end points.Completed National Institute for Health Research (NIHR) Portfolio Cancer clinical trials (all cancer specialities/age-groups) will be included if they contain a primary/secondary PRO end point. The NIHR portfolio includes cancer trials, supported by a range of funders, adjudged as high-quality clinical research studies. The sample will be drawn from studies completed between 31 December 2000 and 1 March 2014 (n=1141) to allow sufficient time for completion of the final trial report and publication. Two reviewers will then review the protocols and arising publications of included trials to: (1) determine the completeness of their PRO-specific protocol content; (2) determine the proportion and completeness of PRO reporting in UK Cancer trials and (3) model factors associated with PRO protocol and reporting completeness and with PRO reporting proportion.The study was approved by the ethics committee at University of Birmingham (ERN_15-0311). Trial findings will be disseminated via presentations at local, national and international conferences, peer-reviewed journals and social media including the CPROR twitter account and UOB departmental website (http://www.birmingham.ac.uk/cpro0r)

The moral journey of learning a pedagogy: a qualitative exploration of student–teachers’ formal and informal writing of dialogic pedagogy

YesStudents of education encounter a range of pedagogies yet how future teachers’ appropriate moral principles are little understood. We conducted an investigation into this process with 10 international students of education attending an intensive course on ‘dialogic pedagogy’ in a university in Finland. The data comprising student learning journals and essays were coded for the level of questioning, acceptance and irreverence. In the findings, reverential acceptance was more frequent than questioning and irreverence; however, our qualitative analysis also found a large number of micro-transitions between questioning, acceptance and irreverence suggesting a dynamic interplay. Recognising this vacillation as part of a moral journey may support better understanding of what it means to engage with a different pedagogy

International perspectives on suboptimal patient-reported outcome trial design and reporting in cancer clinical trials: a qualitative study

Purpose: Evidence suggests that the patient-reported outcome (PRO) content of cancer trial protocols is frequently inadequate and non-reporting of PRO findings is widespread. This qualitative study examined the factors influencing suboptimal PRO protocol content, implementation, and reporting, and use of PRO data during clinical interactions. Methods: Semi-structured interviews were conducted with four stakeholder groups: (1) trialists and chief investigators; (2) people with lived experience of cancer; (3) international experts in PRO cancer trial design; (4) journal editors, funding panelists, and regulatory agencies. Data were analyzed using directed thematic analysis with an iterative coding frame. Results: Forty-four interviews were undertaken. Several factors were identified that could influenced effective integration of PROs into trials and subsequent findings. Participants described (1) late inclusion of PROs in trial design; (2) PROs being considered a lower priority outcome compared to survival; (3) trialists’ reluctance to collect or report PROs due to participant burden, missing data, and perceived reticence of journals to publish; (4) lack of staff training. Strategies to address these included training research personnel and improved communication with site staff and patients regarding the value of PROs. Examples of good practice were identified. Conclusion: Misconceptions relating to PRO methodology and its use may undermine their planning, collection, and reporting. There is a role for funding, regulatory, methodological, and journalistic institutions to address perceptions around the value of PROs, their position within the trial outcomes hierarchy, that PRO training and guidance is available, signposted, and readily accessible, with accompanying measures to ensure compliance with international best practice guidelines

Electronic Patient Reporting of Adverse Events and Quality of Life: A Prospective Feasibility Study in General Oncology

PURPOSE: Adverse event (AE) reporting is essential in clinical trials. Clinician interpretation can result in under-reporting; therefore, the value of patient self-reporting has been recognized. The National Cancer Institute has developed a Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) for direct patient AE reporting. A nonrandomized prospective cohort feasibility study aimed to explore the compliance and acceptability of an electronic (Internet or telephone) system for collecting patient self-reported AEs and quality of life (QOL). METHODS: Oncology patients undergoing treatment (chemotherapy, targeted agents, hormone therapy, radiotherapy, and/or surgery) at 2 hospitals were sent automated weekly reminders to complete PRO-CTCAE once a week and QOL (for a maximum of 12 weeks). Patients had to speak/understand English and have access to the Internet or a touch-tone telephone. Primary outcome was compliance (proportion of expected questionnaires), and recruitment rate, attrition, and patient/staff feedback were also explored. RESULTS: Of 520 patients, 249 consented (47.9%)—mean age was 62 years, 51% were male, and 70% were married—and 230 remained on the study at week 12. PRO-CTCAE was completed at 2,301 (74.9%) of 3,074 timepoints and QOL at 749 (79.1%) of 947 timepoints. Individual weekly/once every 4 weeks compliance reduced over time but was more than 60% throughout. Of 230 patients, 106 (46.1%) completed 13 or more PRO-CTCAE, and 136 (59.1%) of 230 patients completed 4 QOL questionnaires. Most were completed on the Internet (82.3%; mean age, 60.8 years), which was quicker, but older patients preferred the telephone option (mean age, 70.0 years). Positive feedback was received from patients and staff. CONCLUSION: Self-reporting of AEs and QOL using an electronic home-based system is feasible and acceptable. Implementation of this approach in cancer clinical trials may improve the precision and accuracy of AE reporting