Pragmatic, consensus-based minimum standards and structured interview to guide the selection and development of cancer support group leaders

© 2018 Dr. Amanda Kay PomeryAcross the globe, peer support groups have emerged as a community-led approach to connecting people with cancer experiences and accessing support. Members of cancer support groups seek to help themselves and each other to reduce the negative or disabling effect that cancer may have on general health, relationships, coping, and daily functioning. With no centralised registry, the number of cancer support groups is unknown but thought to be considerable. Peak cancer agencies have established relationships with support groups, in an effort to strengthen and sustain delivery of peer support. Agency funding, training, resources, and support staff are extended to groups, with the group leader being the primary recipient and point of contact. Group leadership is usually provided voluntarily by people with a personal experience of cancer. Challenges have been reported in maintaining group leaders’ quality of life and preventing burn-out. The ability of an individual to function in the role and maintain this role over a period of time is important for group sustainability. However, little is known about the essential qualities required to lead a cancer support group, or how to determine a person’s suitability for the role. Initial scoping of the literature revealed the lack of a relevant role analysis and no accurate synopsis of the basic knowledge, skills, and attributes required for the group leader role. There are no published guidelines, standards, or tools to guide selection and development of peer support group leaders. This project aimed to generate pragmatic, consensus-based minimum standards for the cancer support peer group leader role, and to develop a structured interview and user manual to guide the selection and development of cancer support group leaders. The interview was anchored in a comprehensive role analysis and validities were maximised by increasing structure in process and use of the interview data. Following a systematic review of research relevant to the desirable qualities for support group leaders, an online Delphi study was used to reach expert-consensus on the 52 knowledge, skills, and attributes considered essential for cancer support group leaders. These 52 requisite knowledge, skills, and attributes describe the minimum standards for the role, and were used to develop the structured interview. The structured interview and accompanying user manual were piloted for aspects of clinical utility and determined to be appropriate, accessible, practical, and acceptable for use by cancer agency workers. The structured interview was field tested with 63 current support group leaders to determine a potential cut-off score for selection of group leader’s suitability. However, a more comprehensive pool of participants and scores are required to determine reasonable cut-off scores. This PhD project used pragmatic, novel, and robust methods to respond to a real-world problem. Our study outputs are a first in the field, with scope for future research and development to apply the structured interview more broadly

Skills, knowledge and attributes of support group leaders: a systematic review

Objectives: A systematic review and qualitative synthesis was undertaken to deduce requisite knowledge, skills and attributes of cancer support group leaders. Methods Medline, CINAHL, and PsychINFO databases were used to identify relevant literature. Inclusion criteria were made deliberately broad after pilot searches produced too few documents and included: adult group leaders who were volunteers, peers or professionals; published in English from database inception to February 2014. Data was extracted on: year of publication; country of authors' origin; study design (if relevant) and methods; group type and group leadership; sample description; and leader qualities. Results Forty-nine documents met inclusion criteria. Fourteen reported on cancer groups, 31 on non-cancer groups (including four mixed groups) and four did not specify group type. Seven qualities were deduced including group management, group process, role modelling, awareness, willingness, agreeableness, and openness. These were consistent across group type and group leadership. Conclusions Findings may be relevant to a general model of peer group support and can inform the development of a practical and realistic minimum standard for support group leadership in healthcare. Practice implications Results can be used to help cancer agencies manage relationships with group leaders. Knowledge of requisite qualities may inform selection, training and support

Codesigning a patient support portal with health professionals and men with prostate cancer: An action research study

Abstract Introduction The supportive care needs of men with prostate cancer (PCa) have been well documented, but little is known about how an online portal may address these. This study sought to determine priority issues facing men with PCa, barriers and enablers to accessing care and whether health professionals (HPs) and men would support the inclusion of a patient‐reported outcome (PRO) comparator tool. Methods We conducted four online focus groups with HPs recruited from healthcare services in Victoria, followed by seven online codesign workshops with men with PCa, recruited through the Victorian Prostate Cancer Outcomes Registry, Prostate Cancer Foundation Australia and the Cancer Council Victoria. Men were eligible to participate if they had lived experience of PCa and access to the internet. We analysed focus groups thematically. Workshops were analysed using descriptive‐content analysis. Results HPs (n = 39) highlighted that men had shifting priorities over time, but noted the importance of providing information to men in lay terms to assist in treatment decision‐making and side‐effect management. HPs identified key enablers to men accessing support services such as practice nurses, partners and having men share their stories with each other. HPs raised financial, cultural, geographic and emotional barriers to accessing supportive care. Inclusion of a PRO comparator tool received mixed support from HPs, with 41% (n = 16) supportive, 49% (n = 19) unsure and 10% (n = 4) not supportive. Men involved in workshops (n = 28) identified informational needs to assist in treatment decision‐making and side‐effect management as the top priority throughout care. Men described support groups and practice nurses as key enablers. Short consultation times and complex information were described as barriers. Unlike HPs, all men supported the inclusion of a PRO comparator tool in a portal. Conclusions Our findings suggest that a patient support portal should provide information in lay terms that address the shifting priorities of men with PCa. Men with PCa would welcome the development of a portal to centralize support information and a PRO comparator tool to prompt health‐seeking behaviour. Future research will implement these findings in the development of a portal, and pilot and evaluate the portal within a population‐based sample. Patient or Public Contribution This project adopted a codesign approach including both men with PCa and HPs involved in PCa care. Men with PCa also formed part of the study's steering committee and consumer advisory groups. HPs were consulted in a serious of online focus groups. Subsequently, men with PCa and their support persons participated in workshops. Men with PCa were also involved in the preparation of this manuscript

EX-MED cancer: A best practice exercise medicine program for people with cancer

Doran, CM ORCiD: 0000-0002-9009-4906Many cancer survivors suffer serious long-term health problems. Research has established appropriate exercise as a safe and effective intervention for cancer survivors, which leads to improved wellbeing. This evidence has led major organisations worldwide to recommend exercise for cancer survivors. Despite this, the majority of survivors don’t exercise and no evidence-based exercise services are routinely available for Victorian survivors. This project will develop, implement and evaluate a sustainable model of care to improve the health and wellbeing of cancer survivors through translation of best practice exercise delivered in the community

Search for long-lived particles decaying to e±μ∓νe^\pm \mu^\mp \nu

International audienceLong-lived particles decaying to ${e ^\pm } {\mu ^\mp } {\nu }$, with masses between 7 and $50 \,\text {GeV/}c^2$ and lifetimes between 2 and $50 \,\text {ps}$, are searched for by looking at displaced vertices containing electrons and muons of opposite charges. The search is performed using $5.4 \,\text {fb} ^{-1}$ of $p p$ collisions collected with the LHCb detector at a centre-of-mass energy of $\sqrt{s} = 13 \,\text {TeV}$. Three mechanisms of production of long-lived particles are considered: the direct pair production from quark interactions, the pair production from the decay of a Standard-Model-like Higgs boson with a mass of $125 \,\text {GeV/}c^2$, and the charged current production from an on-shell $W$ boson with an additional lepton. No evidence of these long-lived states is obtained and upper limits on the production cross-section times branching fraction are set on the different production modes

Observation of Multiplicity Dependent Prompt χc1(3872)\chi_{c1}(3872) and ψ(2S)\psi(2S) Production in pppp Collisions

The production of $χ_{c1}$(3872) and $ψ$(2S) hadrons is studied as a function of charged particle multiplicity in pp collisions at a center-of-mass energy of 8 TeV, corresponding to an integrated luminosity of 2 fb-1. For both states, the fraction that is produced promptly at the collision vertex is found to decrease as charged particle multiplicity increases. The ratio of $χ_{c1}$(3872) to $ψ$(2S) cross sections for promptly produced particles is also found to decrease with multiplicity, while no significant dependence on multiplicity is observed for the equivalent ratio of particles produced away from the collision vertex in b-hadron decays. This behavior is consistent with a calculation that models the $χ_{c1}$(3872) structure as a compact tetraquark. Comparisons with model calculations and implications for the binding energy of the $χ_{c1}$(3872) state are discussed

First observation of the decay Λb0→ηc(1S)pK−\Lambda_b^0 \to \eta_c(1S) p K^-

International audienceThe decay Λb0→ηc(1S)pK- is observed for the first time using a data sample of proton-proton collisions, corresponding to an integrated luminosity of 5.5  fb-1, collected with the LHCb experiment at a center-of-mass energy of 13 TeV. The branching fraction of the decay is measured, using the Λb0→J/ψpK- decay as a normalization mode, to be B(Λb0→ηc(1S)pK-)=(1.06±0.16±0.06-0.19+0.22)×10-4, where the quoted uncertainties are statistical, systematic and due to external inputs, respectively. A study of the ηc(1S)p mass spectrum is performed to search for the Pc(4312)+ pentaquark state. No evidence is observed and an upper limit of B(Λb0→Pc(4312)+K-)×B(Pc(4312)+→ηc(1S)p)B(Λb0→ηc(1S)pK-)<0.24 is obtained at the 95% confidence level

Measurement of CP Violation in the Decay B+→K+π0B^{+} \rightarrow K^{+} \pi^{0}

International audienceA measurement of CP violation in the decay B+→K+π0 is reported using data corresponding to an integrated luminosity of 5.4  fb-1 collected with the LHCb experiment at a center-of-mass energy of s=13  TeV. The CP asymmetry is measured to be 0.025±0.015±0.006±0.003, where the uncertainties are statistical, systematic, and due to an external input. This is the most precise measurement of this quantity. It confirms and significantly enhances the observed anomalous difference between the direct CP asymmetries of the B+→K+π- and B+→K+π0 decays, known as the Kπ puzzle

The LHCb upgrade I

International audienceThe LHCb upgrade represents a major change of the experiment. The detectors have been almost completely renewed to allow running at an instantaneous luminosity five times larger than that of the previous running periods. Readout of all detectors into an all-software trigger is central to the new design, facilitating the reconstruction of events at the maximum LHC interaction rate, and their selection in real time. The experiment's tracking system has been completely upgraded with a new pixel vertex detector, a silicon tracker upstream of the dipole magnet and three scintillating fibre tracking stations downstream of the magnet. The whole photon detection system of the RICH detectors has been renewed and the readout electronics of the calorimeter and muon systems have been fully overhauled. The first stage of the all-software trigger is implemented on a GPU farm. The output of the trigger provides a combination of totally reconstructed physics objects, such as tracks and vertices, ready for final analysis, and of entire events which need further offline reprocessing. This scheme required a complete revision of the computing model and rewriting of the experiment's software