"We all see things through a different lens based on our life experiences": co-production of a web-based implementation toolkit with stakeholders across the health and social care system.

Background: Implementing new innovations across the health and social care system is complex, involving many factors that in recent years have been compounded by Covid-19. While a plethora of implementation tools and frameworks are available, there are limitations in terms of their design and accessibility. Co-production is a valuable mechanism for developing tools that have utility and accessibility for those tasked with using them in health and social care organisations and there is growing acknowledgement of increasing the role of co-production in implementation science. This paper provides novel insight into co-production practices and relevance to implementation science by reporting findings from a study to co-produce a web-based implementation toolkit (WIT) that is accessible, usable and designed to support adaptive implementation across health and social care systems. Key themes relating to the process of co-production are outlined and the value of using co-production in implementation processes are discussed. Methods: A web-based survey (n = 36) was conducted with a range of stakeholders across health and social care. Findings identified a need for WIT. Survey respondents were invited to express interest in becoming part of a co-production group and to take part in three online interactive workshops to co-produce WIT. Workshops took place with the group (n = 12) and focused on key developmental stages of WIT. Results: Online co-production workshops were integral to the development and refinement of WIT. Benefits of using this process identified three interrelated themes: (i) Co-designing key features of the toolkit, (ii) Co-producing a toolkit with utility for users across health and social care settings, (iii) Co-producing a toolkit to support the implementation journey. Our approach of undertaking co-production as a dialogic process enabled generation of these themes. To illuminate discussion of these themes we draw upon iterative co-development of the "active ingredients" of key components (e.g., interactive Implementation Wheel) and functions (e.g., interactive "pop-up" definitions of keyword) and features (e.g., case studies) of WIT. Conclusion: Using a co-production approach with a range of end-users across health and social care systems, highlights the benefits of understanding implementation processes for users in these settings. User-centred design and processes for ensuring accessibility readily support the translation of implementation into rapidly changing health and social care systems to benefit outcomes for patients, their families, carers, service users and practitioners.

Evaluation of the usability, accessibility and acceptability for a family support intervention (Family-Focused Support Conversation) for end of life care discharge planning from hospital: A participatory learning and action research study.

Background: Family support is internationally recognised as integral to palliative care. However, during end of life care discharge planning from hospital, families report a lack of opportunity to discuss their concerns or contribute their knowledge of the ill family member and consequently feel unheard and unsupported. To counter this experience, we co-produced the Family-Focused Support Conversation, a novel research-informed intervention, to guide discussion of family concerns about the meaning, implications and manageability of end of life caregiving following discharge. Objectives: To qualitatively evaluate the usability, accessibility and acceptability of the Family-Focused Support Conversation in hospital and factors which promote and inhibit implementation. Design: Participatory Learning and Action Research design, guided by Normalization Process Theory, a social implementation theory. Settings: Implementation was undertaken by 45 clinical co-researchers, specialist nurses (n=42) and occupational therapists (n=3), working in specialist palliative care teams in twelve hospitals (within seven NHS Trusts) across England, over a six-month period. Methods: During implementation clinical co-researchers collected reflective data about intervention delivery (n=110), participated in regular in-depth conversations of implementation with the research team (n=26 meeting records) and in a final evaluation meeting (n=11 meeting records). Data from family members who had received the intervention, comprised brief questionnaires (n=15) and in-depth semi-structured interviews (n=6). Data were qualitatively analysed, informed by Normalization Process Theory and Family Sense of Coherence Theory. Results: Clinical co-researchers found the intervention eminently usable and accessible. They reported a shift in family support from informing family members about patient healthcare needs, to family concerns such as how they made sense of the meaning of discharge, and how to provide family-orientated care. Family members found the intervention acceptable, they felt supported and able to make informed decisions about their role in providing end of life care. Implementation was positively influenced by coherence between the intervention and value placed on family care by clinical co-researchers. Once incorporated in their practice intervention delivery took no longer than usual practice and could be divided across consultations and collectively delivered with ward and discharge teams. Conclusions: The Family-Focused Support Conversation is usable, accessible and acceptable. It enhances family support by facilitating discussion of family concerns about end of life caregiving and results in family members making informed decisions about their role in end of life care following discharge. Trial registration: n/a.

Creating pre-conditions for change in clinical practice: the influence of interactions between multiple contexts and human agency.

PURPOSE: The purpose of this paper is to explore what happens when changes to clinical practice are proposed and introduced in healthcare organisations. The authors use the implementation of Treatment Escalation Plans to explore the dynamics shaping the translational journey of a complex intervention from research into the everyday context of real-world healthcare settings. DESIGN/METHODOLOGY/APPROACH: A qualitative instrumental collective case study design was used. Data were gathered using qualitative interviews (n = 36) and observations (n = 46) in three English acute hospital trusts. Normalisation process theory provided the theoretical lens and informed data collection and analysis. FINDINGS: While each organisation faced the same translational problem, there was variation between settings regarding adoption and implementation. Successful change was dependent on participants' ability to manage and shape contexts and the work this involved was reliant on individual capacity to create a new, receptive context for change. Managing contexts to facilitate the move from research into clinical practice was a complex interactive and iterative process. PRACTICAL IMPLICATIONS: The paper advocates a move away from contextual factors influencing change and adoption, to contextual patterns and processes that accommodate different elements of whole systems and the work required to manage and shape them. ORIGINALITY/VALUE: The paper addresses important and timely issues of change in healthcare, particularly for new regulatory and service-oriented processes and practices. Insights and explanations of variations in implementation are revealed which could contribute to conceptual generalisation of context and implementation.

Death and dying in prehospital care: what are the experiences and issues for prehospital practitioners, families and bystanders? A scoping review.

OBJECTIVE: To identify the factors that shape and characterise experiences of prehospital practitioners (PHPs), families and bystanders in the context of death and dying outside of the hospital environment where PHPs respond. DESIGN: A scoping review using Arksey and O'Malley's five-stage framework. Papers were analysed using thematic analysis. DATA SOURCES: MEDLINE; Embase; CINAHL; Scopus; Social Sciences Citation Index (Web of Science), ProQuest Dissertations & Theses A&I (Proquest), Health Technology Assessment database; PsycINFO; Grey Literature Report and PapersFirst were searched from January 2000 to May 2019. ELIGIBILITY CRITERIA FOR SELECTING STUDIES: Qualitative and mixed methods studies reporting the experiences of PHPs, families and bystanders of death and dying in prehospital settings as a result of natural causes, trauma, suicide and homicide, >18 years of age, in Europe, USA, Canada, Australia and New Zealand. RESULTS: Searches identified 15 352 papers of which 51 met the inclusion criteria. The review found substantial evidence of PHP experiences, except call handlers, and papers reporting family and bystander experiences were limited. PHP work was varied and complex, while confident in clinical work, they felt less equipped to deal with the emotion work, especially with an increasing role in palliative and end-of-life care. Families and bystanders reported generally positive experiences but their support needs were rarely explored. CONCLUSIONS: To the best of our knowledge this is the first review that explores the experiences of PHPs, families and bystanders. An important outcome is identifying current gaps in knowledge where further empirical research is needed. The paucity of evidence suggested by this review on call handlers, families and bystanders presents opportunities to investigate their experiences in greater depth. Further research to address the current knowledge gaps will be important to inform future policy and practice.

Co-construction of the family-focused support conversation: a participatory learning and action research study to implement support for family members whose relatives are being discharged for end-of-life care at home or in a nursing home.

BACKGROUND: Many people move in and out of hospital in the last few weeks of life. These care transitions can be distressing for family members because they signify the deterioration and impending death of their ill relative and forthcoming family bereavement. Whilst there is evidence about psychosocial support for family members providing end-of-life care at home, there is limited evidence about how this can be provided in acute hospitals during care transitions. Consequently, family members report a lack of support from hospital-based healthcare professionals. METHODS: The aim of the study was to implement research evidence for family support at the end-of-life in acute hospital care. Informed by Participatory Learning and Action Research and Normalization Process Theory (NPT) we co-designed a context-specific intervention, the Family-Focused Support Conversation, from a detailed review of research evidence. We undertook a pilot implementation in three acute hospital Trusts in England to assess the potential for the intervention to be used in clinical practice. Pilot implementation was undertaken during a three-month period by seven clinical co-researchers - nurses and occupational therapists in hospital specialist palliative care services. Implementation was evaluated through data comprised of reflective records of intervention delivery (n = 22), in-depth records of telephone implementation support meetings between research team members and co-researchers (n = 3), and in-depth evaluation meetings (n = 2). Data were qualitatively analysed using an NPT framework designed for intervention evaluation. RESULTS: Clinical co-researchers readily incorporated the Family-Focused Support Conversation into their everyday work. The intervention changed family support from being solely patient-focused, providing information about patient needs, to family-focused, identifying family concerns about the significance and implications of discharge and facilitating family-focused care. Co-researchers reported an increase in family members' involvement in discharge decisions and end-of-life care planning. CONCLUSION: The Family-Focused Support Conversation is a novel, evidenced-based and context specific intervention. Pilot implementation demonstrated the potential for the intervention to be used in acute hospitals to support family members during end-of-life care transitions. This subsequently informed a larger scale implementation study. TRIAL REGISTRATION: n/a.

Managing patient preferences and clinical responses in acute pathophysiological deterioration: What do clinicians think treatment escalation plans do?

Treatment Escalation Plans (TEPs) are paper and electronic components of patients' clinical record that are intended to encourage patients and caregivers to contribute in advance to decisions about treatment escalation and de-escalation at times of loss of capacity. There is now a voluminous literature on patient decision-making, but in this qualitative study of British clinicians preparing to implement a new TEP, we focus on the ways that they understood it as much more than a device to promote patient awareness of the potential for pathophysiological deterioration and to elicit their preferences about care. Working through the lens of Callon's notion of agencements, and elements of May and Finch's Normalisation Process Theory, we show how clinicians saw the TEP as an organising device that enabled translation work to elicit individual preferences and so mitigate risks associated with decision-making under stress; and transportation work to make possible procedures that would transport agreed patterns of collective action around organisations and across their boundaries and to mitigate risks that resulted from relational and informational fragmentation. The TEP promoted these shifts by making possible the restructuring of negotiated obligations between patients, caregivers, and professionals, and by restructuring practice governance through promoting rules and resources that would form expectations of professional behaviour and organisational activity.

Escalation-related decision making in acute deterioration: a retrospective case note review.

AIM: To describe how decision making inter-relates with the sequence of events in individuals who die during admission and identify situations where formal treatment escalation plans (TEPs) may have utility. DESIGN AND METHODS: A retrospective case note review using stratified sampling. Two data analysis methods were applied concurrently: directed content analysis and care management process mapping via annotated timelines for each case. Analysis was followed by expert clinician review (n=7), contributing to data interpretation. SAMPLE: 45 cases, age range 38-96 years, 23 females and 22 males. Length of admission ranged from <24 hours to 97 days. RESULTS: Process mapping led to a typology of care management, encompassing four trajectories: early de-escalation due to catastrophic event; treatment with curative intent throughout; treatment with curative intent until significant point; and early treatment limits set. Directed content analysis revealed a number of contextual issues influencing decision making. Three categories were identified: multiple clinician involvement, family involvement and lack of planning clarity; all framed by clinical complexity and uncertainty. CONCLUSIONS: The review highlighted the complex care management and related decision-making processes for individuals who face acute deterioration. These processes involved multiple clinicians, from numerous specialities, often within hierarchical teams. The review identified the need for visible and clear management plans, in spite of the frame of clinical uncertainty. Formal TEPs can be used to convey such a set of plans. Opportunities need to be created for patients and their families to request TEPs, in consultation with the clinicians who know them best, outside of the traumatic circumstances of acute deterioration.

Implementing communication and decision-making interventions directed at goals of care: a theory-led scoping review.

OBJECTIVES: To identify the factors that promote and inhibit the implementation of interventions that improve communication and decision-making directed at goals of care in the event of acute clinical deterioration. DESIGN AND METHODS: A scoping review was undertaken based on the methodological framework of Arksey and O'Malley for conducting this type of review. Searches were carried out in Medline and Cumulative Index to Nursing and Allied Health Literature (CINAHL) to identify peer-reviewed papers and in Google to identify grey literature. Searches were limited to those published in the English language from 2000 onwards. Inclusion and exclusion criteria were applied, and only papers that had a specific focus on implementation in practice were selected. Data extracted were treated as qualitative and subjected to directed content analysis. A theory-informed coding framework using Normalisation Process Theory (NPT) was applied to characterise and explain implementation processes. RESULTS: Searches identified 2619 citations, 43 of which met the inclusion criteria. Analysis generated six themes fundamental to successful implementation of goals of care interventions: (1) input into development; (2) key clinical proponents; (3) training and education; (4) intervention workability and functionality; (5) setting and context; and (6) perceived value and appraisal. CONCLUSIONS: A broad and diverse literature focusing on implementation of goals of care interventions was identified. Our review recognised these interventions as both complex and contentious in nature, making their incorporation into routine clinical practice dependent on a number of factors. Implementing such interventions presents challenges at individual, organisational and systems levels, which make them difficult to introduce and embed. We have identified a series of factors that influence successful implementation and our analysis has distilled key learning points, conceptualised as a set of propositions, we consider relevant to implementing other complex and contentious interventions.

Barriers to advance care planning at the end of life: an explanatory systematic review of implementation studies.

CONTEXT: Advance Care Plans (ACPs) enable patients to discuss and negotiate their preferences for the future including treatment options at the end of life. Their implementation poses significant challenges. OBJECTIVE: To investigate barriers and facilitators to the implementation of ACPs, focusing on their workability and integration in clinical practice. DESIGN: An explanatory systematic review of qualitative implementation studies. DATA SOURCES: Empirical studies that reported interventions designed to support ACP in healthcare. Web of Knowledge, Ovid MEDLINE, CINAHL, PsycINFO, British Nursing Index and PubMed databases were searched. METHODS: Direct content analysis, using Normalization Process Theory, to identify and characterise relevant components of implementation processes. RESULTS: 13 papers identified from 166 abstracts were included in the review. Key factors facilitating implementation were: specially prepared staff utilizing a structured approach to interactions around ACPs. Barriers to implementation were competing demands of other work, the emotional and interactional nature of patient-professional interactions around ACPs, problems in sharing decisions and preferences within and between healthcare organizations. CONCLUSIONS: This review demonstrates that doing more of the things that facilitate delivery of ACPs will not reduce the effects of those things that undermine them. Structured tools are only likely to be partially effective and the creation of a specialist cadre of ACP facilitators is unlikely to be a sustainable solution. The findings underscore both the challenge and need to find ways to routinely incorporate ACPs in clinical settings where multiple and competing demands impact on practice. Interventions most likely to meet with success are those that make elements of Advance Care Planning workable within complex and time pressured clinical workflows.

A qualitative study exploring the experience of the partners of cancer survivors and their views on the role of primary care.

PURPOSE: The partners of cancer survivors may experience distress, anxiety, fear and uncertainty whilst also caring for and supporting a partner who is ill. As they concentrate on the cancer survivor's needs, their own needs may remain unaddressed. Primary care staff may be well placed to support partners as they are generally accessible and may have a better knowledge of the patient's background and family relationships. However, their current involvement in the cancer survivor's and partner's cancer-related care is unclear. This study aimed to describe the experience of the partners of cancer survivors in dealing with cancer-related issues in the first 3 years post-diagnosis, their use of primary care services in relation to these issues and the barriers in doing so and their views on the role that primary care could potentially play in supporting them as carers during this period. METHODS: Semi-structured interviews with 22 partners of cancer survivors diagnosed within the last 3 years and recruited through six GP practices in the Thames Valley Region of the UK were analysed using the 'framework' approach to thematic analysis. RESULTS: Three issues were identified as of particular concern to partners: providing practical support, providing emotional support and managing their own health and well-being. Few partners had sought or received support from primary care specifically for cancer-related issues, indicating confidentiality, lack of knowledge of family relationships and the greater need of the cancer survivor as barriers. Most partners would welcome a proactive approach from primary care and felt that this would provide an opportunity to discuss issues they were concerned about. CONCLUSIONS: Needs and concerns of the partners of cancer survivors in caring for patients are often not addressed. There is a scope for primary care to elicit these needs and provide greater support. Changes to clinical practice in primary care could lead to greater involvement of and to better outcomes for cancer survivors and their partners. A proactive approach to patients and their partners or other close family members at the time of diagnosis through an offer of support and the inclusion in a designated review appointment at the end of initial treatment would be useful.

Views of cancer care reviews in primary care: a qualitative study.

BACKGROUND: The Quality and Outcomes Framework (QOF) provides an incentive for practices to establish a cancer register and conduct a review with cancer patients within 6 months of diagnosis, but implementation is unknown. AIM: To describe: (1) implementation of the QOF cancer care review; (2) patients' experiences of primary care over the first 3 years following a cancer diagnosis; (3) patients' views on optimal care; and (4) the views of primary care professionals regarding their cancer care. DESIGN OF STUDY: Qualitative study using thematic analysis and a framework approach. SETTING: Six general practices in the Thames Valley area. METHOD: Semi-structured interviews with cancer patients and focus groups with primary care teams. RESULTS: Thirty-eight adults with 12 different cancer types were interviewed. Seventy-one primary care team members took part in focus groups. Most cancer care reviews are conducted opportunistically. Thirty-five patients had had a review; only two could recall this. Patients saw acknowledgement of their diagnosis and provision of general support as important and not always adequately provided. An active approach and specific review appointment would legitimise the raising of concerns. Primary care teams considered cancer care to be part of their role. GPs emphasised the importance of being able to respond to individual patients' needs and closer links with secondary care to facilitate a more involved role. CONCLUSION: Patients and primary care teams believe primary care has an important role to play in cancer care. Cancer care reviews in their current format are not helpful, with considerable scope for improving practice in this area. An invitation to attend a specific appointment at the end of active treatment may aid transition from secondary care and improve satisfaction with follow-up in primary care.