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Background Our aim was to develop a validated Patient Reported Experience Measure (PREM) to capture patient and carer experience during participation in experimental cancer medicine trials (ECM): called PREM-ECM. Methods Mixed method design, consisting of four stages. Questionnaire items were produced for both patients and carers using interviews, focus groups, and cognitive interviews with patients and carers separately. For both patient and carer PREMs, a cross-sectional questionnaire study was conducted to identify final items for inclusion using hierarchical item reduction and Rasch analysis. Questionnaire validity and reliability were assessed, including administration feasibility. Results Initial interview participants suggested the need for three PREMs, two specific to patients: (i) a ‘prior’ questionnaire that captured experiences of trial introduction, screening, consenting, and early trial experience (< 6 weeks post consent); and (ii) ‘on-trial’ that captured experiences of ongoing consent and trial participation; and (iii) a PREM specific for carers. The draft 25-item ‘prior’ questionnaire was completed by 162 patients and 162 patients completed the draft 35-item ‘on-trial’ questionnaire. Hierarchical and Rasch analysis produced a 14-item ‘prior’ list and a 15-item list for ‘on-trial’. Both patient PREM’s demonstrated a good fit to the Rasch model following Bonferroni correction (X 2 p = 0.008). The carer 34-draft item questionnaire was completed by 102 participants. Hierarchical and Rasch analysis produced a 13-item list for PREM-ECM-Carer, with good fit to the Rasch model ( X 2 p  = 0.62). The pilot testing demonstrated the feasibility of all the PREMs in capturing patient and caregiver experiences in routine clinical settings. Conclusions The three PREM-ECM questionnaires will be the first validated experience measures for ECM trial patients and their carers. These questionnaires may be used to assess patients’ and their carers’ experiences of ECM and enable robust comparisons across cancer trial units highlighting areas for service improvement.

There is increasing evidence linking cannabis use to onset, continuation, and relapse of psychosis. Contingency Management (CM) is discussed as a candidate intervention to reduce cannabis use. Our study aimed to explore staff views on the feasibility and acceptability of using CM for cannabis reduction in early intervention services for psychosis (EIS), in order to inform wider learning about implementation of such approaches in mental health services. EIS teams in England. Semi-structured interviews and focus groups analysed thematically. Forty managers and staff members working in mental health services where a CM intervention was delivered as part of a trial, four staff who delivered CM in these settings, and three key informants (academic experts in relevant fields). A complex intervention comprising CM with incremental financial incentives (vouchers) for reducing or stopping cannabis use, and psychoeducation about the risks of cannabis use. Acceptability appeared to depend on how well the intervention was seen to fit with the service setting and ethos. Concerns included who should deliver CM; potential impacts on the therapeutic relationship; the ethics of using incentives to reduce socially objectionable behaviours; and how CM fits with the work of mental health practitioners. Feasibility concerns centred on resource limitations including time, cost, training, and national guidance and commissioning. Staff attitudes are likely to be a crucial influence on successful implementation of contingency management for cannabis reduction in specialist mental health settings. Several contextual barriers would need to be overcome to increase the acceptability of the intervention for use in early intervention services for psychosis.

People living with severe mental illness (SMI) have a reduced life expectancy by around 15-20 years, in part due to higher rates of long-term conditions (LTCs) such as diabetes and heart disease. Evidence suggests that people with SMI experience difficulties managing their physical health. Little is known, however, about the barriers, facilitators and strategies for self-management of LTCs for people with SMI. To systematically review and synthesise the qualitative evidence exploring facilitators, barriers and strategies for self-management of physical health in adults with SMI, both with and without long-term conditions. CINAHL, Conference Proceedings Citation Index- Science, HMIC, Medline, NICE Evidence and PsycInfo were searched to identify qualitative studies that explored barriers, facilitators and strategies for self-management in adults with SMI (with or without co-morbid LTCs). Articles were screened independently by two independent reviewers. Eligible studies were purposively sampled for synthesis according to the richness and relevance of data, and thematically synthesised. Seventy-four articles met the inclusion criteria for the review; 25 articles, reporting findings from 21 studies, were included in the synthesis. Seven studies focused on co-morbid LTC self-management for people with SMI, with the remaining articles exploring self-management in general. Six analytic themes and 28 sub-themes were identified from the synthesis. The themes included: the burden of SMI; living with co-morbidities; beliefs and attitudes about self-management; support from others for self-management; social and environmental factors; and routine, structure and planning. The synthesis identified a range of barriers and facilitators to self-management, including the burden of living with SMI, social support, attitudes towards self-management and access to resources. To adequately support people with SMI with co-morbid LTCs, healthcare professionals need to account for how barriers and facilitators to self-management are influenced by SMI, and meet the unique needs of this population.

Objective To understand the public perceptions of the schools Covid-19 testing programme in England. Design Qualitative social media analysis. Setting Online users of parenting forums (Mumsnet and Netmums), Facebook newspaper pages and Daily Mail online readers, who responded to posts or articles about the schools testing programme in England, between 1 and 31 March, 2021. Results Overall, seven main themes were identified, these were divided into barriers and facilitators to engaging in testing for Covid-19. Barriers were: uncertainty around testing in the absence of symptoms; concerns about testing; implications about testing positive; mistrust in the Government. Facilitators were: desire to protect others; desire to return to normality; and hearing others’ positive experiences. Conclusions Our analysis highlighted that alongside well-established barriers to engaging in asymptomatic testing, parents were having to negotiate additional complex decisions around balancing their child’s anxiety over testing alongside acknowledgement of the implications of regular testing, such as return to normality and protecting others. Parents and children would benefit from additional practical and social support to facilitate engagement with the schools testing programme.

Background Consistent evidence suggests that children’s palliative care is not equitable and managed clinical networks (MCNs) have been recommended as a solution. This study explored the perspectives of health professionals involved in the development of a children’s palliative care MCN, with an aim to identify barriers and enablers of successful implementation. Methods Thematic analysis of semi-structured interviews and focus groups with 45 healthcare staff with a role in developing the MCN or in the delivery of children’s palliative care (September 2019–March 2020). Results The study explored health professionals’ perceptions of the MCN features that had helped to formalise governance processes, establish training and networking opportunities, standardise practice, and improve collaboration between organisations. These include the funded MCN co-ordinator, committed individuals who lead the MCN, and a governance structure that fosters collaboration. However, the MCN’s development was impeded by cross-cutting barriers including limited funding for the MCN and children’s palliative care more generally, no shared technology, lack of standards and evidence base for children’s palliative care, and shortage of palliative care staff. These barriers impacted on the MCN’s ability to improve and evaluate palliative care provision and affected member engagement. Competing organisational priorities and differences between NHS and non-NHS members also impeded progress. Training provision was well received, although barriers to access were identified. Conclusions Key features of children’s palliative care can act as barriers to developing a managed clinical network. Managing expectations and raising awareness, providing accessible and relevant training, and sharing early achievements through ongoing evaluation can help to sustain member engagement, which is crucial to a network’s success.

Juvenile idiopathic arthritis (JIA) is a group of autoinflammatory diseases that cause pain and disability if not controlled by treatment. Parenting a child with JIA is stressful for parents, who express concerns about their child's treatment and may experience anxiety and powerlessness concerning their child's illness. Parenting stress is greater in parents of children with chronic illness than in those with healthy children and is related to poorer psychological adjustment in both parents and children. It is therefore important to develop interventions to support parents. This paper reports the evaluation of a web-based tool that provides information and practical skills to help increase parents' confidence in managing their child's illness and reduce parenting stress. The aim of this study is to evaluate the benefits of a web-based tool (WebParC) for parents of children with recently diagnosed JIA. A multicentered randomized controlled trial was conducted at pediatric rheumatology centers in England. We recruited parents of children aged ≤12 years who had been diagnosed with JIA within the previous 6 months. They were randomized to the intervention (WebParC access plus standard care) or the control (standard care alone) and followed up 4 months and 12 months after randomization. Where both parents participated, they were randomized by household to the same trial arm. The WebParC intervention consists of information about JIA and its treatment plus a toolkit, based on cognitive behavioral therapy, to help parents develop skills to manage JIA-related issues. The primary outcome was the self-report Pediatric Inventory for Parents measure of illness-related parenting stress. The secondary outcomes were parental mood, self-efficacy, coping, effectiveness of participation in their child's health care, satisfaction with health care, and child's health-related quality of life. A total of 203 households comprising 220 parents were randomized to the intervention (100/203, 49.3%) or control (103/203, 50.7%) arm. Follow-up assessments were completed by 65.5% (133/203) of the households at 4 months (intervention 60/100, 60%, and control 73/103, 70.9%) and 61.1% (124/203) of the households at 12 months (intervention 58/100, 58%, and control 66/103, 64.1%). A main effect of the trial arm was found on the Pediatric Inventory for Parents: the intervention participants reported less frequency (subscales communication F =5.37; P=.02, and role function F =5.40; P=.02) and difficulty (subscales communication F =7.43; P=.006, medical care F =4.04; P=.04, and role function F =4.37, P=.04) regarding illness-related stressful events than the control participants. The WebParC website for parents of children with JIA reduced illness-related parenting stress. This web-based intervention offers a feasible preventive approach for parents of children with JIA and potentially could be adapted and evaluated for parents of children with other chronic illnesses. International Standard Randomized Controlled Trial Number (ISRCTN) 13159730; http://www.isrctn.com/ISRCTN13159730.

For patients with recurrent cancer or still undergoing treatment, hearing this bell being rung is upsetting and demoralising, says Jo Taylor