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BACKGROUND: The process of tailored implementation is ill-defined and under-explored. The ItFits-toolkit was developed and subsequently tested as a self-guided online platform to facilitate implementation of tailored strategies for internet-based cognitive behavioural therapy (iCBT) services. In ImpleMentAll, ItFits-toolkit had a small but positive effect on the primary outcome of iCBT normalisation. This paper investigates, from a qualitative perspective, how implementation teams developed and undertook tailored implementation using the toolkit within the trial. METHODS: Implementation teams in thirteen sites from nine countries (Europe and Australia) used the ItFits-toolkit for six months minimum, consistent with the trial protocol. A qualitative process evaluation was conducted. Descriptive data regarding goals, barriers, strategies, and implementation plans collected within the toolkit informed qualitative data collection in real time. Qualitative data included remote longitudinal interviews (n = 55) with implementation team members (n = 30) and observations of support calls (n = 19) with study sites. Qualitative data were analysed thematically, using a team-based approach. RESULTS: Implementation teams developed and executed tailored implementation projects across all steps in the toolkit process. Working in a structured way but with room for flexibility, decisions were shaped by team members' ideas and goals, iterative stakeholder engagement, internal and external influences, and the context of the ImpleMentAll project. Although teams reported some positive impacts of their projects, 'time', both for undertaking the work, and for seeing project impacts, was described as a key factor in decisions about implementation strategies and assessments of success. CONCLUSION: This study responds directly to McHugh et al.'s (2022) call for empirical description of what implementation tailoring looks like in action, in service settings. Self-guided facilitation of tailored implementation enables implementers in service settings to undertake tailoring within their organisations. Implementation tailoring takes considerable time and involves detailed work but can be supported through the provision of implementation science informed guidance and materials, iterative and ongoing stakeholder engagement, and working reflectively in response to external influencing factors. Directions for advancement of tailored implementation are suggested.
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Terapia Cognitivo-Comportamental , Ciência da Implementação , Pesquisa Qualitativa , Humanos , Austrália , Terapia Cognitivo-Comportamental/métodos , Europa (Continente) , Internet , Intervenção Baseada em InternetRESUMO
BACKGROUND: The Making Every Contact Count (MECC) programme provides training and materials to support public-facing workers to encourage health-promoting behaviour change by using the day-to-day interactions between organisations and individuals. This project aimed to analyse MECC implementation through a comparative analysis of implementation stage, strategies used for implementation and enablers/barriers of the implementation process within a region in England-the North East and North Cumbria (NENC). METHODS: A mixed-methods process evaluation was conducted applying normalisation process theory and theoretical domains framework. MECC programme documents were reviewed and mapped against specific criteria (eg, implementation strategies). An online mapping survey was conducted to establish current implementation/delivery of MECC within NENC settings (eg, local government, healthcare and voluntary community sector). Qualitative research, using individual interviews and group discussions, was conducted to establish further understanding of MECC implementation. RESULTS: Our findings were informed by reviewing documents (n=5), surveying participants (n=34), interviews (n=18) and group discussions (n=48). Overall, the implementation of MECC within the region was at an early stage, with training mostly delivered between, rather than within, organisations. Qualitative findings highlighted factors that influence stakeholders to implement MECC (eg, organisational goals that were facilitated by MECC implementation, including the prevention agenda), supported resources that facilitate the implementation of MECC (eg, logic models) and enabling factors that promote MECC sustainability across the region (eg, buy-in from leadership and management). CONCLUSIONS: The NENC MECC programme is built around regional leadership that supports the implementation process. This process evaluation identified key influences of MECC implementation across the region. We discuss evidence-based recommendation for policy and practice that can be taken forward to develop targeted strategies to support future MECC implementation. For example, a co-ordinated infrastructure and strategy is needed to combat delivery and implementation issues identified.
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Promoção da Saúde , Humanos , Inglaterra , Promoção da Saúde/métodos , Pesquisa Qualitativa , Avaliação de Programas e Projetos de Saúde , Inquéritos e QuestionáriosRESUMO
Background: Quantitative studies show people living with a lower-grade glioma (LGG) often report low health-related quality of life. However, it is unclear how this impact is experienced; resulting supportive care needs are also poorly understood. We explored how people experience the impact of living long-term with an LGG, to help identify potential supportive care needs. Methods: We conducted semi-structured interviews with a diverse group of people with LGG (nâ =â 28) across the United Kingdom, who had completed primary treatment (male nâ =â 16, female nâ =â 12, mean age 54.6 years, mean time since diagnosis 8.7 years). Interviews were transcribed and inductive thematic analysis was conducted. Results: Four themes relating to the impact experiences of people with LGG were generated: "Emotional response to the diagnosis," "Living with the 'What ifs'," "Changing relationships," and "Faltering independence." These reflect participants' experiences with symptoms (eg, fatigue, seizures) and impairments (eg, motor dysfunction, cognitive deficits), and how these, in turn, drive impacts on daily living (including on work, relationships, social activities, and transport). Participants spoke about their experiences with profound emotion throughout. Conclusions: People with LGG can experience wide-ranging everyday impacts and may have extensive supportive care needs. This study highlights how this impact is experienced and what it means to people with LGG. Best practice suggestions for conducting comprehensive needs assessments tailored to those with LGG, and the development of personalized plans to meet those needs, would be a critical step to ensure that people with LGG are best supported in living with their condition.
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This research is centred in the specialty of early phase cancer research - the branch of clinical research that focuses on phase one and phase two clinical trials. The aim was to gain an understanding of the complexity of work involved in implementing an educational intervention within the clinical pathway for newly referred early phase cancer clinical trial patients. The May and Finch Normalisation Process Theory (NPT) was used to understand, develop and evaluate the process of embedding an educational resource at referral hospital sites. Elements emerged from the evaluation that provide insights into the complexity of the implementation work that took place. The main elements were: pandemic-related challenges, change management, leadership, shared purpose, teamwork, workforce capacity and patient outcomes. The findings shed light on the barriers to or facilitators of the implementation of the educational resource.
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COVID-19 , Neoplasias , Humanos , Neoplasias/terapia , COVID-19/epidemiologia , Educação de Pacientes como Assunto/organização & administração , Ensaios Clínicos como Assunto , PandemiasRESUMO
BACKGROUND: Supported self-management can improve clinical and psychosocial outcomes in people with cancer; the considerations required to implement self-management support (SMS) for people living with a lower-grade glioma (LGG)-who often have complex support needs-are not known. We aimed to identify and understand these implementation considerations through the lens of normalisation process theory (NPT), from the perspectives of healthcare professionals (HCP) and people with LGG. METHODS: We conducted semistructured interviews with HCPs who support adults with brain tumours (n = 25; 12 different healthcare professions), and people with LGG who had completed primary treatment (n = 28; male n = 16, mean age 54.6 years, mean time since diagnosis 8.7 years), from across the United Kingdom. Interviews were transcribed and inductive open coding conducted, before deductively mapping to constructs of NPT. We first mapped HCP data, then integrated data from people with LGG to explore alignment in experiences and perspectives. RESULTS: We generated supporting evidence for all four NPT constructs and related subconstructs, namely: 'Coherence', 'Cognitive participation', 'Collective action' and 'Reflexive monitoring'. Data from HCPs and people with LGG clearly demonstrated that effective SMS constitutes a collective activity. Key implementation considerations included: ensuring awareness of, and access to, support; building strong HCP-support recipient relationships; and careful inclusion of close family and friends. We identified pertinent challenges, such as identifying support needs (influenced by the extent to which those with LGG engage in help-seeking), resistance to support (e.g., technology literacy), training for HCPs and HCP cooperation. CONCLUSIONS: This study demonstrates the collective nature of, and provides insight into the individual roles within, supported self-management. We outline considerations to operationalise, sustain and appraise the implementation of SMS for people with LGG. PATIENT OR PUBLIC CONTRIBUTION: People with brain tumours, and informal caregivers, were involved in the development of information materials and topic guides to ensure accessibility and pertinence. They also had opportunities to comment on interview findings.
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Neoplasias Encefálicas , Glioma , Entrevistas como Assunto , Autogestão , Humanos , Masculino , Pessoa de Meia-Idade , Feminino , Glioma/terapia , Glioma/psicologia , Reino Unido , Neoplasias Encefálicas/terapia , Neoplasias Encefálicas/psicologia , Adulto , Pesquisa Qualitativa , Pessoal de Saúde/psicologia , Apoio Social , IdosoRESUMO
Aims/objectives: Ambulance clinician assessment of suspected stroke patients aims to provide rapid access to specialist care, however regional and national data show increasing pre-hospital times. This study explored paramedic views about factors contributing to on-scene time (OST) for suspected stroke patients, with a view to identifying opportunities for future interventions, to reduce OST. Methods: Views of paramedics from one regional service on factors influencing OST were explored using a qualitative approach. Semi-structured interviews with volunteers were recorded, transcribed and analysed using thematic analysis. Results: Interviews were conducted with 13 paramedics between August and November 2021. Five interlinked themes were identified and described a range of factors influencing OST: 'Initial assessment and sources of information' describes how clinicians make assessments based on initial presentation, influenced by pre-arrival information from ambulance control and family members / bystanders at the scene, and how this influences OST.'Suitability for treatment and interventions' describes how paramedics consider actions such as the face, arms, speech test, cannulation, electrocardiograms and neurological assessments while recognising that pre-hospital interventions for suspected stroke are limited.'The environment' describes the influence of incident setting on OST, including the overall process needed to transport the patient to appropriate care.'Hospital interactions' describes how interactions with hospital staff influenced paramedic actions and OST.'Changing practice' describes the influence of experience and interaction with hospital staff leading to changes in paramedic practice over time. Conclusion: This study provides insight into how UK paramedics spend time on scene with stroke patients. Multiple factors influencing OST were identified which signpost opportunities for interventions designed to reduce OST. Standardising on-scene assessments for stroke patients, refining communication processes between ambulance services and hospital stroke services and increasing availability of stroke continuing professional development for paramedics were all identified as potential targets for improving OST.
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PURPOSE: Self-management can have clinical and quality-of-life benefits. However, people with lower-grade gliomas (LGG) may face chronic tumour- and/or treatment-related symptoms and impairments (e.g. cognitive deficits, seizures), which could influence their ability to self-manage. Our study aimed to identify and understand the barriers and facilitators to self-management in people with LGG. METHODS: We conducted semi-structured interviews with 28 people with LGG across the United Kingdom, who had completed primary treatment. Sixteen participants were male, mean age was 50.4 years, and mean time since diagnosis was 8.7 years. Interviews were audio-recorded and transcribed. Following inductive open coding, we deductively mapped codes to Schulman-Green et al.'s framework of factors influencing self-management, developed in chronic illness. RESULTS: Data suggested extensive support for all five framework categories ('Personal/lifestyle characteristics', 'Health status', 'Resources', 'Environmental characteristics', 'Healthcare system'), encompassing all 18 factors influencing self-management. How people with LGG experience many of these factors appears somewhat distinct from other cancers; participants described multiple, often co-occurring, challenges, primarily with knowledge and acceptance of their incurable condition, the impact of seizures and cognitive deficits, transport difficulties, and access to (in)formal support. Several factors were on a continuum, for example, sufficient knowledge was a facilitator, whereas lack thereof, was a barrier to self-management. CONCLUSIONS: People with LGG described distinctive experiences with wide-ranging factors influencing their ability to self-manage. IMPLICATIONS FOR CANCER SURVIVORS: These findings will improve awareness of the potential challenges faced by people with LGG around self-management and inform development of self-management interventions for this population.
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BACKGROUND: There is a need to better understand autism across the life course, including the lives of both autistic people and supporting relatives. As part of a larger mixed methods cohort study involving autistic adults, carers and relatives this sub-study focused on the experiences of relatives alone to learn more about the lives of people from the wider personal networks. Our research questions were: 1. What are the experiences of family members who care for and/or support autistic adults, 2. How can the viewpoints of relatives add to what we know about transitions and challenges experienced by autistic adults, and 3. What strategies/support have been helpful for adults and relatives? METHODS: Relatives of autistic adults were purposively sampled and recruited using the Relatives/Carers cohort from the Adult Autism Spectrum Cohort-UK. 18 participants aged 31-81years who were related to 16 autistic adults aged 18-57years were interviewed for 24-91minutes. Interview transcripts were examined using reflexive thematic analysis. MAIN FINDINGS: Two overarching themes were developed, 'Family support goes a long way in caring for autistic adults' and 'When families turn to society for support' with subthemes. Relatives described benefits they had gained and their admiration for autistic adults. They reflected on how they gave support for independence in various contexts of dependence. They also identified the challenges that both autistic adults and families face navigating support systems (for example for healthcare and employment). An important novel outcome was the advocated value of role-models with lived experience who come from outside of the family. RECOMMENDATIONS: The findings lead to recommendations for: (i) Strategies to reduce the barriers for support that are faced by autistic individuals and relatives during crisis points; (ii) recognition and support for what enables both relatives and autistic adults to function independently (e.g. funded activities, flexible employment); (iii) future planning conversations to include relatives who can enhance knowledge and help plan for future care or support needs for autistic adults and (iv) opportunities for role models (persons with lived experience, autistic adults and relatives) to inspire others and disseminate knowledge. CONCLUSIONS: These findings add valuable insights into the experiences of relatives of autistic adults and challenge the reader to have greater appreciation of the many roles relatives can contribute across time and in a variety of contexts. These perspectives add important information for those working with and planning provision for autistic adults.
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Transtorno Autístico , Transtornos Globais do Desenvolvimento Infantil , Adulto , Criança , Humanos , Estudos de Coortes , Comunicação , Pesquisa QualitativaRESUMO
Those closest to people with lower-grade gliomas (LGGs) often assume the role of informal caregiver (IC). The additional responsibilities mean ICs of people with cancer can experience adverse impacts on their own lives. We explored the emotional impact of informal caregiving for people with LGGs. This was a descriptive qualitative study within the multi-method Ways Ahead project. We conducted semi-structured interviews with individuals from the United Kingdom, who currently, or in the past 5 years, informally cared for someone with an LGG. Interviews encompassed experiences of emotional impact as a consequence of caregiving for someone with an LGG. Inductive thematic analysis was undertaken. We interviewed 19 ICs (mean age 54.6 years; 14 females, 5 males). Participants reported substantial emotional impact. Four themes and associated subthemes were generated: Emotional responses to the illness (e.g. feeling helpless), Emotional responses to the unknown (e.g. anxiety about future uncertainty), Emotional consequences of care recipient changes (e.g. challenges of changed relationship dynamics), and Emotional weight of the responsibility (e.g. feeling burnout). Emotional impact in one area often exacerbated impact in another (e.g. future uncertainty impacted feelings of helplessness). Participants detailed the factors that helped them manage the emotional impact (e.g. being resilient). ICs of people with LGGs can experience wide-ranging emotional responses to and impacts of the illness, uncertain prognosis, care recipient changes, and the toll of caregiving. Adjustment and resilience are key protective factors, though further consideration of ways to identify and fulfil the emotional support needs of ICs of people with LGGs is required.
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Glioma , Resiliência Psicológica , Masculino , Feminino , Humanos , Pessoa de Meia-Idade , Glioma/psicologia , Emoções , Ansiedade , Cuidadores/psicologiaRESUMO
BACKGROUND: Implementing evidence-based healthcare practices (EBPs) is a complex endeavour and often lags behind research-informed decision processes. Understanding and systematically improving implementation using implementation theory can help bridge the gap between research findings and practice. This study aims to translate, pilot, and validate a German version of the English NoMAD questionnaire (G-NoMAD), an instrument derived from the Normalisation Process Theory, to explore the implementation of EBPs. METHODS: Survey data has been collected in four German research projects and subsequently combined into a validation data set. Two versions of the G-NoMAD existed, independently translated from the original English version by two research groups. A measurement invariance analysis was conducted, comparing latent scale structures between groups of respondents to both versions. After determining the baseline model, the questionnaire was tested for different degrees of invariance (configural, metric, scalar, and uniqueness) across samples. A confirmatory factor analysis for three models (a four-factor, a unidimensional, and a hierarchical model) was used to examine the theoretical structure of the G-NoMAD. Finally, psychometric results were discussed in a consensus meeting, and the final instructions, items, and scale format were consented to. RESULTS: A total of 539 health care professionals completed the questionnaire. The results of the measurement invariance analysis showed configural, partial metric, and partial scalar invariance indicating that the questionnaire versions are comparable. Internal consistency ranged from acceptable to good (0.79 ≤ α ≤ 0.85) per subscale. Both the four factor and the hierarchical model achieved a better fit than the unidimensional model, with indices from acceptable (SRMR = 0.08) to good (CFI = 0.97; TLI = 0.96). However, the RMSEA values were only close to acceptable (four-factor model: χ2164 = 1029.84, RMSEA = 0.10; hierarchical model: χ2166 = 1073.43, RMSEA = 0.10). CONCLUSIONS: The G-NoMAD provides a reliable and promising tool to measure the degree of normalisation among individuals involved in implementation activities. Since the fit was similar in the four-factor and the hierarchical model, priority should be given to the practical relevance of the hierarchical model, including a total score and four subscale scores. The findings of this study support the further usage of the G-NoMAD in German implementation settings. TRIAL REGISTRATION: Both the AdAM project (No. NCT03430336, 06/02/2018) and the EU-project ImpleMentAll (No. NCT03652883, 29/08/2018) were registered on ClinicalTrials.gov. The ImplementIT study was registered at the German Clinical Trial Registration (No. DRKS00017078, 18/04/2019). The G-NoMAD validation study was registered at the Open Science Framework (No7u9ab, 17/04/2023).
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PURPOSE: To propose a comprehensive multidimensional model of activity pacing that improves health-related quality of life and promotes sustained physical activity engagement among adults with chronic conditions. MATERIALS AND METHODS: A narrative review was conducted to examine the existing literature on activity pacing, health-related quality of life, pain and fatigue management, and physical activity promotion in chronic conditions. RESULTS: The literature revealed a lack of a cohesive approach towards a multidimensional model for using activity pacing to improve health-related quality of life. A comprehensive multidimensional model of activity pacing was proposed, emphasizing the importance of considering all aspects of pacing for sustained physical activity engagement and improved health-related quality of life. The model incorporates elements such as rest breaks, self-regulatory skills, environmental factors, and effective coping strategies for depression/anxiety. It takes into account physical, psychological, and environmental factors, all of which contribute significantly to the enhancement of health-related quality of life, physical function, and overall well-being, reflecting a holistic approach. CONCLUSIONS: The model offers guidance to researchers and clinicians in effectively educating patients on activity pacing acquisition and in developing effective interventions to enhance physical activity engagement and health outcomes among adults with chronic conditions. Additionally, it serves as a tool towards facilitating discussions on sustained physical activity and a healthy lifestyle for patients, which can eventually lead to improved quality of life.
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Dor Crônica , Síndrome de Fadiga Crônica , Autocontrole , Adulto , Humanos , Qualidade de Vida , Dor Crônica/terapia , Síndrome de Fadiga Crônica/psicologia , Depressão , Fadiga/terapia , Doença CrônicaRESUMO
Fatigue is barrier of physical activity participation in adults with chronic conditions. However, physical activity alleviates fatigue symptoms. This systematic review and meta-analysis aimed to (1) synthesise evidence from randomised controlled trials (RCTs) exploring the effects of physical activity interventions on fatigue reduction and (2) evaluate their effectiveness. Medline/CINAHL/EMBASE/Web of Science and Scopus were searched up to June 24th, 2023. Two reviewers independently conducted study screening and selection (RCTs), extracted data and assessed risk of bias (RoB2). Outcome was the standardised mean difference (SMD) with 95% confidence intervals in fatigue between experimental and control groups. 38 articles met the inclusion criteria. Overall, physical activity interventions moderately reduced fatigue (SMD = 0.54, p < 0.0001). Interventions lasting 2-6 weeks demonstrated a larger effect on fatigue reduction (SMD = 0.86, p < 0.00001). Interventions with 18-24 sessions showed a large effect on fatigue reduction (SMD = 0.97, p < 0.00001). Aerobic cycling and combination training interventions had a large to moderate effect (SMD = 0.66, p = 0.0005; SMD = 0.60, p = 0.0010, respectively). No long-term effects were found during follow-up. Physical activity interventions moderately reduced fatigue among adults with chronic conditions. Duration, total sessions, and mode of physical activity were identified as key factors in intervention effectiveness. Further research is needed to explore the impact of physical activity interventions on fatigue.
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Ciclismo , Terapia por Exercício , Fadiga , Adulto , Humanos , Fadiga/etiologia , Fadiga/terapia , Ensaios Clínicos Controlados Aleatórios como Assunto , Doença Crônica/terapiaRESUMO
OBJECTIVES: This study aimed to explore the work experiences of people living with an oligodendroglioma. DESIGN: This was a descriptive qualitative study. One-time semi-structured interviews exploring supportive care needs were conducted; work was discussed at various points throughout each interview. An inductive thematic analysis was undertaken. SETTING: Participants were recruited across the UK through four National Health Service hospitals and the Brain Tumour Charity research involvement networks. PARTICIPANTS: 19 people with grade 2 or 3 oligodendroglioma (mean age 52 years; male n=11). At diagnosis, 16 participants were working, 2 studying and 1 retired. At the interview (mean time since diagnosis 9.6 years; range 1-18 years), seven participants were working, eight retired (four on medical grounds) and four unable to work due to illness. RESULTS: Seven themes were constructed: (1) physical and cognitive limitations; (2) work ability and productivity; (3) work accommodations; (4) changing roles; (5) attitudes of clients and coworkers; (6) feelings and ambitions; and (7) financial implications. Fatigue, seizures and cognitive deficits influenced work ability. A stressful work environment could exacerbate symptoms. Changes in job roles and work environment were often required. Employer and coworker support were integral to positive experiences. Work changes could result in financial stress and strain. CONCLUSIONS: This study has highlighted, for the first time, influences on work experiences in this understudied population. These findings have implications for clinicians and employers, when considering the importance of work in rehabilitation for people with oligodendrogliomas, and the individually assessed adjustments required to accommodate them, should employment be desired.
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Oligodendroglioma , Humanos , Masculino , Pessoa de Meia-Idade , Medicina Estatal , Emprego/psicologia , Pesquisa Qualitativa , AposentadoriaRESUMO
BACKGROUND: People with type 1 diabetes and raised glucose levels are at greater risk of retinopathy, nephropathy, neuropathy, cardiovascular disease, sexual health problems and foot disease. The UK National Institute for Health and Care Excellence (NICE) recommends continuous subcutaneous 'insulin pump' therapy for people with type 1 diabetes whose HbA1c is above 69 mmol/mol. Insulin pump use can improve quality of life, cut cardiovascular risk and increase treatment satisfaction. About 90,000 people in England and Wales meet NICE criteria for insulin pumps but do not use one. Insulin pump use also varies markedly by deprivation, ethnicity, sex and location. Increasing insulin pump use is a key improvement priority. Audit and feedback is a common but variably effective intervention. Limited capabilities of healthcare providers to mount effective responses to feedback from national audits, such as the National Diabetes Audit (NDA), undermines efforts to improve care. We have co-developed a theoretically and empirically informed quality improvement collaborative (QIC) to strengthen local responses to feedback with patients and carers, national audits and healthcare providers. We will evaluate whether the QIC improves the uptake of insulin pumps following NDA feedback. METHODS: We will undertake an efficient cluster randomised trial using routine data. The QIC will be delivered alongside the NDA to specialist diabetes teams in England and Wales. Our primary outcome will be the proportion of people with type 1 diabetes and an HbA1c above 69 mmol/mol who start and continue insulin pump use during the 18-month intervention period. Secondary outcomes will assess change in glucose control and duration of pump use. Subgroup analyses will explore impacts upon inequalities by ethnicity, sex, age and deprivation. A theory-informed process evaluation will explore diabetes specialist teams' engagement, implementation, fidelity and tailoring through observations, interviews, surveys and documentary analysis. An economic evaluation will micro-cost the QIC, estimate cost-effectiveness of NDA feedback with QIC and estimate the budget impact of NHS-wide QIC roll out. DISCUSSION: Our study responds to a need for more head-to-head trials of different ways of reinforcing feedback delivery. Our findings will have implications for other large-scale audit and feedback programmes. TRIAL REGISTRATION: ISRCTN82176651 Registered 18 October 2022.
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Diabetes Mellitus Tipo 1 , Insulinas , Humanos , Análise Custo-Benefício , Diabetes Mellitus Tipo 1/tratamento farmacológico , Hemoglobinas Glicadas , Melhoria de Qualidade , Qualidade de Vida , Ensaios Clínicos Controlados Aleatórios como Assunto , Masculino , FemininoRESUMO
BACKGROUND: The implementation of complex interventions is considered challenging, particularly in multi-site clinical trials and dynamic clinical settings. This study protocol is part of the family intensive care units (FICUS) hybrid effectiveness-implementation study. It aims to understand the integration of a multicomponent family support intervention in the real-world context of adult intensive care units (ICUs). Specifically, the study will assess implementation processes and outcomes of the study intervention, including fidelity, and will enable explanation of the clinical effectiveness outcomes of the trial. METHODS AND ANALYSIS: This mixed-methods multiple case study is guided by two implementation theories, the Normalisation Process Theory and the Consolidated Framework for Implementation Research. Participants are key clinical partners and healthcare professionals of eight ICUs allocated to the intervention group of the FICUS trial in the German-speaking part of Switzerland. Data will be collected at four timepoints over the 18-month active implementation and delivery phase using qualitative (small group interviews, observation, focus group interviews) and quantitative data collection methods (surveys, logs). Descriptive statistics and parametric and non-parametric tests will be used according to data distribution to analyse within and between cluster differences, similarities and factors associated with fidelity and the level of integration over time. Qualitative data will be analysed using a pragmatic rapid analysis approach and content analysis. ETHICS AND DISSEMINATION: Ethics approval was obtained from the Cantonal Ethics Committee of Zurich BASEC ID 2021-02300 (8 February 2022). Study findings will provide insights into implementation and its contribution to intervention outcomes, enabling understanding of the usefulness of applied implementation strategies and highlighting main barriers that need to be addressed for scaling the intervention to other healthcare contexts. Findings will be disseminated in peer-reviewed journals and conferences. PROTOCOL REGISTRATION NUMBER: Open science framework (OSF) https://osf.io/8t2ud Registered on 21 December 2022.
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Ficus , Humanos , Adulto , Apoio Familiar , Unidades de Terapia Intensiva , Projetos de Pesquisa , Pessoal de SaúdeRESUMO
PURPOSE: Lower-grade gliomas (LGG) are mostly diagnosed in working-aged adults and rarely cured. LGG patients may face chronic impairments (e.g. fatigue, cognitive deficits). Self-management can improve clinical and psychosocial outcomes, yet how LGG patients self-manage the consequences of their tumour and its treatment is not fully understood. This study, therefore, aimed to identify and understand how LGG patients engage in the self-management of their condition. METHODS: A diverse group of 28 LGG patients (age range 22-69 years; male n = 16, female n = 12; mean time since diagnosis = 8.7 years) who had completed primary treatment, were recruited from across the United Kingdom. Semi-structured interviews were conducted. Informed by a self-management strategy framework developed in cancer, directed content analysis identified and categorised self-management types and strategies used by patients. RESULTS: Overall, 20 self-management strategy types, comprising 123 self-management strategies were reported; each participant detailed extensive engagement in self-management. The most used strategy types were 'using support' (n = 28), 'creating a healthy environment' (n = 28), 'meaning making' (n = 27), and 'self-monitoring' (n = 27). The most used strategies were 'accepting the tumour and its consequences' (n = 26), 'receiving support from friends (n = 24) and family' (n = 24), and 'reinterpreting negative consequences' (n = 24). CONCLUSIONS: This study provides a comprehensive understanding of the strategies used by LGG patients to self-manage their health and wellbeing, with a diverse, and substantial number of self-management strategies reported. IMPLICATIONS FOR CANCER SURVIVORS: The findings will inform the development of a supported self-management intervention for LGG patients, which will be novel for this patient group.
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BACKGROUND: The implementation science literature acknowledges a need for engagement of key stakeholders when designing, delivering and evaluating implementation work. To date, the literature reports minimal or focused stakeholder engagement, where stakeholders are engaged in either barrier identification and/or barrier prioritisation. This paper begins to answer calls from the literature for the development of tools and guidance to support comprehensive stakeholder engagement in implementation research and practice. The paper describes the systematic development of the Implementation-STakeholder Engagement Model (I-STEM) in the context of an international, large-scale empirical implementation study (ImpleMentAll) aimed at evaluating the effectiveness of a tailored implementation toolkit. The I-STEM is a sensitising tool that defines key considerations and activities for undertaking stakeholder engagement activities across an implementation process. METHODS: In-depth, semistructured interviews and observations were conducted with implementers who were tailoring implementation strategies to integrate and embed internet-based cognitive behavioural therapy (iCBT) services in 12 routine mental health care organisations in nine countries in Europe and Australia. The analytical process was informed by principles of first- and third-generation Grounded Theory, including constant comparative method. RESULTS: We conducted 55 interviews and observed 19 implementation-related activities (e.g., team meetings and technical support calls). The final outcome of our analysis is expressed in an initial version of the I-STEM, consisting of five interrelated concepts: engagement objectives, stakeholder mapping, engagement approaches, engagement qualities and engagement outcomes. Engagement objectives are goals that implementers plan to achieve by working with stakeholders in the implementation process. Stakeholder mapping involves identifying a range of organisations, groups or people who may be instrumental in achieving the engagement objectives. Engagement approaches define the type of work that is undertaken with stakeholders to achieve the engagement objectives. Engagement qualities define the logistics of the engagement approach. Lastly, every engagement activity may result in a range of engagement outcomes. CONCLUSION: The I-STEM represents potential avenues for substantial stakeholder engagement activity across key phases of an implementation process. It provides a conceptual model for the planning, delivery, evaluation and reporting of stakeholder engagement activities. The I-STEM is nonprescriptive and highlights the importance of a flexible, iterative approach to stakeholder engagement. It is developmental and will require application and validation across a range of implementation activities. PATIENT OR PUBLIC CONTRIBUTION: Patient contribution to ImpleMentAll trial was facilitated by GAMIAN-Europe at all stages-from grant development to dissemination. GAMIAN-Europe brings together a wide variety of patient representation organisations (local, regional and national) from almost all European countries. GAMIAN-Europe was involved in pilot testing the ItFits-toolkit and provided their views on the various aspects, including stakeholder engagement. Patients were also represented in the external advisory board providing support and advice on the design, conduct and interpretation of the wider project, including the development of the ItFits-toolkit. TRIAL REGISTRATION: ClinicalTrials.gov NCT03652883. Retrospectively registered on 29 August 2018.
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Apoio Social , Participação dos Interessados , Humanos , Serviço Social , Austrália , Europa (Continente)RESUMO
INTRODUCTION: Pre-hospital stroke care focusses on rapid access to specialist stroke units, but UK ambulance data shows increasing pre-hospital times. This study aimed to describe factors contributing towards ambulance on-scene times (OST) for suspected stroke patients and identify targets for a future intervention. PATIENTS AND METHODS: Ambulance clinicians in North East Ambulance Service were asked to complete a survey after transporting any suspected stroke patients to describe the patient encounter, interventions and timings. Completed surveys were linked with electronic patient care records. Potentially modifiable factors were identified by the study team. Poisson regression analysis quantified the association of selected potentially modifiable factors with OST. RESULTS: About 2037 suspected stroke patients were conveyed between July and December 2021, resulting in 581 fully completed surveys by 359 different clinicians. The median age of patients was 75 years (interquartile range (IQR) 66-83) and 52% of patients were male. Median OST was 33 min (IQR 26-41). Three potentially modifiable factors were identified as contributors to extended OST. Performing additional advanced neurological assessments added 10% to OST (34 vs 31 min, p = 0.008); intravenous cannulation added 13% (35 vs 31 min, p = <0.001) and ECGs added 22% (35 vs 28 min, p = <0.001). CONCLUSIONS: This study identified three potentially modifiable factors that increased pre-hospital OST with suspected stroke patients. This type of data can be used to target interventions at behaviours that extend pre-hospital OST but which have questionable patient benefit. This approach will be evaluated in a follow up study in the North East of England.
Assuntos
Serviços Médicos de Emergência , Acidente Vascular Cerebral , Humanos , Masculino , Idoso , Feminino , Ambulâncias , Serviços Médicos de Emergência/métodos , Seguimentos , Hospitais , Acidente Vascular Cerebral/diagnósticoRESUMO
OBJECTIVE: Self-management support can improve quality of life, mood, self-efficacy, and physical function following a stroke. Knowledge of how people with stroke understand and experience self-management in different contexts is crucial to developing effective self-management support. This study explored how people with stroke understand and practice self-management during the post-acute phase. METHOD: A descriptive study using qualitative content analysis to explore data from semistructured interviews RESULTS: Eighteen participants were interviewed. Most participants interpreted self-management as 'taking care of their business' and 'being independent". However, they encountered difficulties performing daily activities, for which they felt unprepared. Although interest in implementing self-management support increases, participants did not report receiving specific advice from healthcare professionals. CONCLUSION: People continue to feel unprepared to manage everyday activities after hospital discharge and must largely work things out for themselves. There is an overlooked opportunity to start the process of self-management support earlier in the stroke pathway, with healthcare professionals and people with stroke combining their skills, ideas and expertise. This would enable confidence to self-management to flourish rather than decrease during the transition from hospital to home. PRACTICAL IMPLICATIONS: Individual tailored self-management support could help people with stroke more successfully manage their daily lives post-stroke.