Understanding supported self-management for people living with a lower-grade glioma: Implementation considerations through the lens of normalisation process theory.

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.

Implementing an educational resource for patients participating in cancer clinical trials during the pandemic.

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.

A qualitative exploration of ambulance clinician behaviour and decision making to identify factors influencing on-scene times for suspected stroke patients in North East England.

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.

The lived experiences of relatives of autistic adults, and their perceptions of their relationships with autistic adults across multiple age-related transitions and demands: A qualitative interview study with reflexive thematic analysis.

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.

Barriers and facilitators to self-management in people living with a lower-grade glioma.

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.

"It changes everything": Understanding how people experience the impact of living with a lower-grade glioma.

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 (n = 28) across the United Kingdom, who had completed primary treatment (male n = 16, female n = 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.

Mapping regional implementation of 'Making Every Contact Count': mixed-methods evaluation of implementation stage, strategies, barriers and facilitators of implementation.

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.

How is tailored implementation undertaken using a self-guided toolkit? Qualitative study of the ItFits-toolkit in the ImpleMentAll project.

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.

Characteristics and Components of Self-Management Interventions for Improving Quality of Life in Cancer Survivors: A Systematic Review.

Self-management can improve clinical and psychosocial outcomes in cancer survivors. Which intervention characteristics and components are beneficial is unclear, hindering implementation into practice. We systematically searched six databases from inception to 17 November 2021 for studies evaluating self-management interventions for adult cancer survivors post-treatment. Independent reviewers screened for eligibility. Data extraction included population and study characteristics, intervention characteristics (TIDieR) and components (PRISMS), (associations with) quality of life (QoL), self-efficacy, and economic outcomes. Study quality was appraised, and narrative synthesis was conducted. We identified 53 papers reporting 32 interventions. Studies had varying quality. They were most often randomised controlled trials (n = 20), targeted at survivors of breast (n = 10), prostate (n = 7), or mixed cancers (n = 11). Intervention characteristics (e.g., provider, location) varied considerably. On average, five (range 1-10) self-management components were delivered, mostly "Information about condition and its management" (n = 26). Twenty-two studies reported significant QoL improvements (6 also reported significant self-efficacy improvements); these were associated most consistently with combined individual and group delivery. Economic evaluations were limited and inconclusive. Self-management interventions showed promise for improving QoL, but study quality was variable, with substantial heterogeneity in intervention characteristics and components. By identifying what to adapt from existing interventions, these findings can inform development and implementation of self-management interventions in cancer.

Cross-cultural adaptation of the NoMAD questionnaire to Brazilian Portuguese

SUMMARY BACKGROUND: The Normalization Measure Development (NoMAD) tool is used to determine the contextual determinants in the process of implementing complex health interventions. The aim of this study is to translate and culturally adapt NoMAD to Brazilian Portuguese. METHODS: The cross-cultural adaptation was performed in five steps: 1) translation of the questionnaire into Portuguese; 2) synthesis and creation of the first version; 3) back-translation of the instrument into the source language; 4) review of the instrument by a group of experts and target professionals; and 5) pretesting. A final version of the questionnaire was answered by users of a clinical monitoring system in specialist care services for people living with HIV/AIDS, and the internal consistency of the questionnaire was assessed using Cronbach's alpha. RESULTS: The questionnaire was answered by 188 health professionals, of which 87.7% were female, and the average age was 45.2 years. For the final version of the questionnaire, Cronbach's alpha was over 0.70 for the construct's coherence (0.74), collective action (0.70), cognitive participation (0.71), and reflexive monitoring (0.81). CONCLUSION: The NoMAD questionnaire was cross-culturally adapted and can be used to evaluate the implementation of complex health care interventions.

RESUMO INTRODUÇÃO: O questionário Normalisation Measure Development (NoMAD) tool busca identificar os fatores contextuais determinantes no processo de implementação de intervenções complexas em saúde. Este artigo tem por objetivo traduzir e adaptar culturalmente o NoMAD para o português do Brasil. MÉTODOS: A adaptação transcultural foi realizada em cinco etapas: 1-Tradução do questionário para o português; 2-Síntese e criação da primeira versão; 3-Retro-tradução do instrumento para a língua de origem; 4-Revisão por grupo de especialista e profissionais-alvo do instrumento; e 5-Pré-teste. A versão final do questionário foi respondida por usuários do sistema de monitoramento clínico em serviços de assistência especializada às pessoas vivendo com HIV/AIDS e sua consistência interna foi avaliada por meio de alpha de Cronbach. RESULTADOS: O questionário foi respondido por 188 profissionais, 87,7% eram do sexo feminino e média de idade de 45,2 anos. A versão final do questionário apresentou α de Cronbach superiores a 0.70 nos construtos coerência (0.74), ação coletiva (0.70), participação cognitiva (0,71) e monitoramento reflexivo (0.81). CONCLUSÃO: O questionário NoMAD foi adaptado transculturalmente e pode ser utilizado para avaliar a implementação de intervenções complexas no cuidado em saúde.