Paying clinicians to join clinical trials : a review of guidelines and interview study of trialists

Background: The motivations of clinicians to participate in clinical trials have been little studied. This project explored the potential role of payment for participation in publicly funded clinical trials in the UK. The aims were to review relevant guidelines and to collate and analyse views of clinical trialists on the role of payments and other factors that motivated clinicians to join clinical trials. Methods: Review of guidelines governing payments to clinicians for recruitment to trials. Semistructured interviews with a range of NHS clinical trial leaders, analysed using qualititative methods. Results: While UK guidelines had little to say specifically on payments linked to recruitment, all payments have become highly regulated and increasingly transparent. Interview participants believed that expenses arising from research should be covered. Payments in excess of expenses were seen as likely to increase participation but with the risk of reducing quality. Motivations such as interest in the topic, the scope for patients to benefit and intellectual curiosity were considered more important. Barriers to involvement included bureaucracy and lack of time. Discussion: Limited scope exists for paying clinicians over-and-above the cost of their time to be involved in research. Most trialists favour full payment of all expenses related to research. Conclusion: Payment of clinicians beyond expenses is perceived to be a less important motivating factor than researching important, salient questions, and facilitating research by reducing bureaucracy and delay

Development and evaluation of an early specialised traumatic brain injury vocational rehabilitation training package

Background: In a feasibility randomised controlled trial, training was developed to equip Occupational Therapists to deliver Early Specialised Traumatic Brain Injury Vocational Rehabilitation in the English National Health Service. Methods: The package was developed by "experts" in vocational rehabilitation and traumatic brain injury and included a manual, direct instruction by six trainers and opportunity for mentorship by four therapists. Following training, therapists were interviewed regarding the effectiveness and "ease of use" of the package. Interviews were analysed using the framework approach. Results: Five trained therapists were interviewed regarding the package. Results were organised into 6 categories: (1) motivation to participate in research; (2) impact of the learning environment; (3) changing confidence levels over time; (4) growing appreciation of complexities about the intervention; (5) acceptability of the training package; (6) lessons for future implementation. Conclusions: Therapists reported acquiring knowledge necessary to implement the intervention. Data indicates that training packages require detailed descriptions of the interventions being taught for local implementation in the NHS and for future research. Training materials are valued by therapists but require time for familiarisation and reminders from mentors help put training into practice. Therapists have concerns about implementing interventions within a research context, which researchers should address

Linking people with long-term health conditions to healthy community activities: development of Patient-Led Assessment for Network Support (PLANS)

Objective To combine insights from service users with long-term conditions (LTCs) to assist the development of a community referral intervention designed to promote engagement and improve access to health-relevant resources. Background Social deprivation and reduced access to resources have been causally linked with social isolation and the ability to manage LTCs. Participation in meaningful activity has been associated with positive health benefits, and strategies to promote access to community activities have shown some potential to improve outcomes for people with LTCs. This suggests the need to develop an engagement and referral intervention in partnership with service users and community groups as part of mainstream self-care support. Method A series of focus groups and interviews with members of community groups in Greater Manchester designed as an iterative and collaborative approach to elicit the role of personal and community networks that support long-term condition management (LTCM) to develop a community referral tool. Results Participants reported a broad range of resources relevant to LTCM that often went beyond the usual concerns associated with self-care. This helped to inform a tool (PLANS) to tailor access to types of community-based resources which can support LTCM. Conclusions Understanding the everyday challenges of living with a LTC highlighted the importance of connecting and engaging with localized support for people. In response to this, we developed an intervention (PLANS) which tailors access to local resources based on personal preferences, needs and acceptability to encourage service users to engage with sustainable health choices

Developing future injury prevention research leaders - in support of 'mentoring'

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Assessment of the benefits of user involvement in health research from the Warwick Diabetes Care Research User Group : a qualitative case study

Objective  To assess the benefits of involving health-care users in diabetes research. Design and participants  For this qualitative case study, semi-structured interviews were conducted with researchers who had worked extensively with the group. During regular meetings of the Research User Group, members discussed their views of the group's effectiveness as part of the meeting's agenda. Interviews and discussions were transcribed, coded using N-Vivo software and analysed using constant comparative methods. Results  Involvement of users in research was generally seen as contributing to effective and meaningful research. However, the group should not be considered to be representative of the patient population or participants of future trials. An important contributor to the group's success was its longstanding nature, enabling users to gain more insight into research and form constructive working relationships with researchers. The user-led nature of the group asserted itself, especially, in the language used during group meetings. A partial shift of power from researchers to users was generally acknowledged. Users' main contribution was their practical expertise in living with diabetes, but their involvement also helped researchers to remain connected to the `real world' in which research would be applied. While the group's work fulfilled established principles of consumer involvement in research, important contributions relying on personal interaction between users and researchers were hard to evaluate by process measures alone. Conclusions  We demonstrated the feasibility, acceptability and effectiveness of this longstanding, experienced, lay-led research advisory group. Its impact on research stems from the continuing interaction between researchers and users, and the general ethos of learning from each other in an on-going process. Both process measures and qualitative interviews with stakeholders are needed to evaluate the contributions of service users to health research

Effects of the diabetes manual 1:1 structured education in primary care

Aims  To determine the effects of the Diabetes Manual on glycaemic control, diabetes-related distress and confidence to self-care of patients with Type 2 diabetes. Methods  A cluster randomized, controlled trial of an intervention group vs. a 6-month delayed-intervention control group with a nested qualitative study. Participants were 48 urban general practices in the West Midlands, UK, with high population deprivation levels and 245 adults with Type 2 diabetes with a mean age of 62 years recruited pre-randomization. The Diabetes Manual is 1:1 structured education designed for delivery by practice nurses. Measured outcomes were HbA1c, cardiovascular risk factors, diabetes-related distress measured by the Problem Areas in Diabetes Scale and confidence to self-care measured by the Diabetes Management Self-Efficacy Scale. Outcomes were assessed at baseline and 26 weeks. Results  There was no significant difference in HbA1c between the intervention group and the control group [difference −0.08%, 95% confidence interval (CI) −0.28, 0.11]. Diabetes-related distress scores were lower in the intervention group compared with the control group (difference −4.5, 95% CI −8.1, −1.0). Confidence to self-care Scores were 11.2 points higher (95% CI 4.4, 18.0) in the intervention group compared with the control group. The patient response rate was 18.5%. Conclusions  In this population, the Diabetes Manual achieved a small improvement in patient diabetes-related distress and confidence to self-care over 26 weeks, without a change in glycaemic control. Further study is needed to optimize the intervention and characterize those for whom it is more clinically and psychologically effective to support its use in primary care

Exploring patient and public involvement in stroke research: a qualitative study

PURPOSE: To explore the experiences of patients and carers involved in patient and public involvement (PPI) activities for stroke research. METHODS: Semi-structured interviews conducted with stroke survivors and carers (n = 11) were analysed using thematic analysis. RESULTS: Four key themes emerged: impact of PPI on the individual and the research process, credibility and expertise, level of involvement and barriers and facilitators to PPI for stroke survivors and carers. The perceived benefits to the research process included: asking questions, keeping researchers grounded and directing the research agenda. All participants drew upon their experiential expertise in their PPI role, but some also drew upon their professional expertise to provide additional credibility. Stroke survivors and carers can be involved in PPI at different levels of involvement simultaneously and the majority of participants wanted to be more involved. Barriers to involvement included: location, transport and stroke survivors capacity to concentrate and comprehend complex information. Facilitators included: reimbursement for travel and time and professionals effort to facilitate involvement. CONCLUSIONS: PPI in stroke research benefits stroke survivors and carers and is perceived to benefit the research process. The barriers and facilitators should be considered by professionals intending to engage stroke survivors and carers collaboratively in research. IMPLICATIONS FOR REHABILITATION: This study has implications for PPI in stroke rehabilitation research, which could also be extrapolated to stroke rehabilitation service development and evaluation. Professionals facilitating PPI need to invest in developing supportive relationships in order to maintain ongoing involvement. Professionals need to be aware of how the varied consequences of stroke might impede participation and strategies to facilitate involvement for all who wish to be involved. For each rehabilitation issue being considered professionals need to decide: (1) how representative of the specific rehabilitation population the PPI members need to be, (2) whether experience alone is sufficient or whether additional professional skills are required and (3) whether training is likely to assist involvement or potentially reduce the lay representation

Early childhood nutrition concerns, resources, and services for Aboriginal families in Victoria

Abstract Objective: To investigate the child nutrition concerns of Aboriginal families with young children attending Aboriginal health and early childhood services in Victoria; training needs of early childhood practitioners; and sources of nutrition and child health information and advice for Aboriginal families with young children. Method: Qualitative needs assessment involving consultation with Aboriginal parents of young children aged 0–8 years attending Aboriginal health and early childhood services, and early childhood practitioners from Aboriginal health and early childhood services in urban and regional Victoria. Focus groups were conducted with 35 Aboriginal parents and interviews conducted with 45 health and early childhood practitioners. Thematic analysis was used to generate and then refine distinct, internally consistent common themes from the data. Results: The most frequent issues identified were low levels of breastfeeding, inappropriate introduction of solids, reliance on bottles, sweet drinks, and energy‐dense foods, poor oral health and overweight. Concerns about staff training and capacity, and access to maternal and child health services were also common. Conclusion and implication: This study identifies major gaps in service delivery for Aboriginal families with young children and points to the need for a coordinated, culturally responsive systems approach to providing support for breastfeeding and child nutrition advice and support for Aboriginal families, including capacity building for staff, and supportive systems and policy

Implementing person-centred key performance indicators to strengthen leadership in community nursing: a feasibility study

From Crossref via Jisc Publications RouterBrendan McCormack - ORCID 0000-0001-8525-8905 https://orcid.org/0000-0001-8525-8905Replaced AM with VoR 2020-09-04Aims To explore the utility and feasibility of implementing eight person‐centred nursing key performance indicators in supporting community nurses to lead the development of person‐centred practice.Background Policy advocates person‐centred healthcare, but few quality indicators exist that explicitly focus on evaluating person‐centred practice in community nursing. Current quality measurement frameworks in the community focus on incidences of poor or missed opportunities for care, with few mechanisms to measure how clients perceive the care they receive.Methods An evaluation approach derived from work of the Medical Research Council was used and the study was underpinned by the Person‐Centred Practice Framework. Participatory methods were used, consistent with person‐centred research.Results Data were thematically analysed, revealing five themes: giving voice to experience, talking the language of person‐centredness, leading for cultural change, proud to be a nurse and facilitating engagement.Conclusions The findings suggest that implementing the 8 person‐centred nursing KPIs and the measurement framework is feasible and offers a means of evidencing person‐centredness in community nursing.Implications for Nursing Management Person‐centred KPI data, used alongside existing quality indicators will enable nurse managers to evidence a high standard of care delivery and assist in the development of person‐centred practice.28pubpub