Exploration of pain assessment and management processes in oncology outpatient services with healthcare professionals: a qualitative study.

OBJECTIVES: This study explored cancer pain management practices and clinical care pathways used by healthcare professionals (HCPs) to understand the barriers and facilitators for standardised pain management in oncology outpatient services (OS). DESIGN: Data were collected using semistructured interviews that were audio-recorded and transcribed. The data were analysed using thematic analysis. SETTING: Three NHS trusts with oncology OS in Northern England. PARTICIPANTS: Twenty HCPs with varied roles (eg, oncologist and nurse) and experiences (eg, registrar and consultant) from different cancer site clinics (eg, breast and lung). Data were analysed using thematic analysis. RESULTS: HCPs discussed cancer pain management practices during consultation and supporting continuity of care beyond consultation. Key findings included : (1) HCPs' level of clinical experience influenced pain assessments; (2) remote consulting impeded experienced HCPs to do detailed pain assessments; (3) diffusion of HCP responsibility to manage cancer pain; (4) nurses facilitated pain management support with patients and (5) continuity of care for pain management was constrained by the integration of multidisciplinary teams. CONCLUSIONS: These data demonstrate HCP cancer pain management practices varied and were unstructured. Recommendations are made for a standardised cancer pain management intervention: (1) detailed evaluation of pain with a tailored self-management strategy; (2) implementation of a structured pain assessment that supports remote consultations, (3) pain assessment tool that can support both experienced and less experienced clinicians. These findings will inform the development of a cancer pain management tool to integrate within routine oncology OS.

Issues affecting supply of palliative medicines into community pharmacy: A qualitative study of community pharmacist and pharmaceutical wholesaler/distributor perspectives.

Background: Patient access to medicines in the community at end-of-life (pertaining to the last year of life) is vital for symptom control. Supply of such medicines is known to be problematic, but despite this, studies have failed to examine the issues affecting community pharmacy access to palliative medicines. Objective: To identify community pharmacists' and pharmaceutical wholesalers'/distributors' views on supply chain processes and challenges in providing access to medicines during the last year of life, to characterise supply in this UK context. Methods: Qualitative design, with telephone interviews analysed using Framework Analysis. Coding frames were developed iteratively with data analysed separately and then triangulated to examine differences in perspectives. Findings: Thirty-two interviews (24 community pharmacists and 8 wholesalers/distributors) were conducted. To ensure appropriate palliative medicines were available despite occasional shortages, community pharmacists worked tirelessly. They navigated a challenging interface with wholesalers/distributors, the Drug Tariff to ensure reimbursement, and multiple systems. IT infrastructures and logistics provided by wholesalers/distributors were often helpful to supply into community pharmacies resulting in same or next day deliveries. However, the inability of manufacturers to predict operational issues or accurately forecast demand led wholesalers/distributors to encounter shortages with manufactured stock levels, reducing timely access to medicines. Conclusions: The study identifies for the first time how palliative medicines supply into community pharmacy, can be improved. A conceptual model was developed, illustrating how influencing factors affect responsiveness and speed of medicines access for patients. Work is required to strengthen this supply chain via effective relationship-building and information-sharing, to prevent patients facing disruptions in access to palliative medicines at end-of-life.

Access to palliative care medicines in the community: An evaluation of practice and costs using case studies of service models in England.

BACKGROUND: Good patient access to medicines at home during the last 12 months of life is critical for effective symptom control, prevention of distress and avoidance of unscheduled and urgent care. OBJECTIVES: To undertake an evaluation of patient and carer access to medicines at end-of-life within the context of models of service delivery. DESIGN: Evaluative, mixed method case studies of service delivery models, including cost analysis. The unit of analysis was the service delivery model, with embedded sub-units of analysis. SETTING: (i) General Practitioner services (ii) Palliative care clinical nurse specialist prescribers (iii) a 24/7 palliative care telephone support line service. PARTICIPANTS: Healthcare professionals delivering end-of-life care; patients living at home, in the last 12 months of life, and their carers. METHODS: Within each case: Patients/carers completed a structured log on medicines access experiences over an 8-week period. Logs were used as an aide memoire to sequential, semi-structured interviews with patients/carers at study entry, and at four and eight weeks. Healthcare professionals took part in semi-structured interviews focused on their experiences of facilitating access to medicines, including barriers, and facilitating factors. Data on prescribed medicines were extracted from patient records. Detailed contextual data on each case were also collected from a range of documents. Patient, carer and healthcare professional interview data were analysed using Framework Analysis to identify main themes. We estimated prescription costs and budget impact analysis of the different service models. Data were triangulated within each case. Cross-case comparison and logic models were employed to enable systematic comparisons across service delivery types. FINDINGS: Accessing medicines is a process characterised by complexity and systems inter-dependency requiring considerable co-ordination work by patients, carers and healthcare professionals. Case studies highlighted differences in speed and ease of access to medicines across service delivery models. Key issues were diversifying the prescriber workforce, the importance of continuity of relationships and team integration, access to electronic prescribing systems, shared records and improved community pharmacy stock. Per patient prescription cost differentials between services were modest but were substantial when accounting for the eligible population over the medium term. CONCLUSIONS: Experiences of medicines access would be improved through increasing numbers of nurse and pharmacist prescribers, and improving shared inter-professional access to electronic prescribing systems and patient records, within care delivery systems that prioritise continuity of relationships. Community pharmacy stock of palliative care medicines also needs to become more reliable.

Community access to palliative care medicines-patient and professional experience: systematic review and narrative synthesis.

BACKGROUND: Providing palliative care patients living at home with timely access to medicines is critical to enable effective symptom management, minimise burden and reduce unplanned use of healthcare services. Little is known about how diverse community-based palliative care models influence medicine access. OBJECTIVE: To produce a critical overview of research on experiences and outcomes of medicine access in community-based palliative care models of service delivery through a systematic review and narrative synthesis. METHODS: MEDLINE, CINAHL, EMBASE, PsycINFO, Cochrane Library databases and grey literature were systematically searched for all types of studies. Study quality was assessed using the Mixed Methods Appraisal Tool; a narrative synthesis was used to integrate and summarise findings. RESULTS: 3331 articles were screened; 10 studies were included in the final sample. Studies included a focus on community pharmacy (n=4), hospice emergency medication kits (HEMKs) in the home (n=3), specialist community nurse prescribers (n=1), general practice (n=1) and one study included multiple service delivery components. Community pharmacy was characterised by access delays due to lack of availability of medicine stock and communication difficulties between the pharmacy and other healthcare professionals. HEMKs were perceived to reduce medicine access time out of hours and speed symptom control. However, the majority of studies comprised small, local samples, largely limited to self-reports of health professionals. There was a lack of data on outcomes, and no comparisons between service delivery models. CONCLUSIONS: Further research is required to understand which models facilitate rapid and efficient access to medicines for community-based palliative care patients.

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.

Supporting patient access to medicines in community palliative care: on-line survey of health professionals' practice, perceived effectiveness and influencing factors.

BACKGROUND: Patient access to medicines at home during the last year of life is critical for symptom control, but is thought to be problematic. Little is known about healthcare professionals' practices in supporting timely medicines access and what influences their effectiveness. The purpose of the study was to evaluate health professionals' medicines access practices, perceived effectiveness and influencing factors. METHODS: On-line questionnaire survey of health care professionals (General Practitioners, Community Pharmacists, community-based Clinical Nurse Specialists and Community Nurses) delivering end-of-life care in primary and community care settings in England. Quantitative data were analysed using descriptive statistics. RESULTS: One thousand three hundred twenty-seven responses were received. All health professional groups are engaged in supporting access to prescriptions, using a number of different methods. GPs remain a predominant route for patients to access new prescriptions in working hours. However, nurses and, increasingly, primary care-based pharmacists are also actively contributing. However, only 42% (160) of Clinical Nurse Specialists and 27% (27) of Community Nurses were trained as prescribers. The majority (58% 142) of prescribing nurses and pharmacists did not have access to an electronic prescribing system. Satisfaction with access to shared patient records to facilitate medicines access was low: 39% (507) were either Not At All or only Slightly satisfied. Out-of-hours specialist cover was reported by less than half (49%; 656) and many General Practitioners and pharmacists lacked confidence advising about out-of-hours services. Respondents perceived there would be a significant improvement in pain control if access to medicines was greater. Those with shared records access reported significantly lower pain estimates for their caseload patients. CONCLUSIONS: Action is required to support a greater number of nurses and pharmacists to prescribe end-of-life medicines. Solutions are also required to enable shared access to patient records across health professional groups. Coverage and awareness of out-of-hours services to access medicines needs to be improved.

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.

Self-management toolkit and delivery strategy for end-of-life pain: the mixed-methods feasibility study.

BACKGROUND: Pain affects most people approaching the end of life and can be severe for some. Opioid analgesia is effective, but evidence is needed about how best to support patients in managing these medicines. OBJECTIVES: To develop a self-management support toolkit (SMST) and delivery strategy and to test the feasibility of evaluating this intervention in a future definitive trial. DESIGN: Phase I - evidence synthesis and qualitative interviews with patients and carers. Phase II - qualitative semistructured focus groups and interviews with patients, carers and specialist palliative care health professionals. Phase III - multicentre mixed-methods single-arm pre-post observational feasibility study. PARTICIPANTS: Phase I - six patients and carers. Phase II - 15 patients, four carers and 19 professionals. Phase III - 19 patients recruited to intervention that experienced pain, living at home and were treated with strong opioid analgesia. Process evaluation interviews with 13 patients, seven carers and 11 study nurses. INTERVENTION: Self-Management of Analgesia and Related Treatments at the end of life (SMART) intervention comprising a SMST and a four-step educational delivery approach by clinical nurse specialists in palliative care over 6 weeks. MAIN OUTCOME MEASURES: Recruitment rate, treatment fidelity, treatment acceptability, patient-reported outcomes (such as scores on the Brief Pain Inventory, Self-Efficacy for Managing Chronic Disease Scale, Edmonton Symptom Assessment Scale, EuroQol-5 Dimensions, Satisfaction with Information about Medicines Scale, and feasibility of collecting data on health-care resource use for economic evaluation). RESULTS: Phase I - key themes on supported self-management were identified from evidence synthesis and qualitative interviews. Phase II - the SMST was developed and refined. The delivery approach was nested within a nurse-patient consultation. Phase III - intervention was delivered to 17 (89%) patients, follow-up data at 6 weeks were available on 15 patients. Overall, the intervention was viewed as acceptable and valued. Descriptive analysis of patient-reported outcomes suggested that interference from pain and self-efficacy were likely to be candidates for primary outcomes in a future trial. No adverse events related to the intervention were reported. The health economic analysis suggested that SMART could be cost-effective. We identified key limitations and considerations for a future trial: improve recruitment through widening eligibility criteria, refine the SMST resources content, enhance fidelity of intervention delivery, secure research nurse support at recruiting sites, refine trial procedures (including withdrawal process and data collection frequency), and consider a cluster randomised design with nurse as cluster unit. LIMITATIONS: (1) The recruitment rate was lower than anticipated. (2) The content of the intervention was focused on strong opioids only. (3) The fidelity of intervention delivery was limited by the need for ongoing training and support. (4) Recruitment sites where clinical research nurse support was not secured had lower recruitment rates. (5) The process for recording withdrawal was not sufficiently detailed. (6) The number of follow-up visits was considered burdensome for some participants. (7) The feasibility trial did not have a control arm or assess randomisation processes. CONCLUSIONS: A future randomised controlled trial is feasible and acceptable. STUDY AND TRIAL REGISTRATION: This study is registered as PROSPERO CRD42014013572; Current Controlled Trials ISRCTN35327119; and National Institute for Health Research (NIHR) Portfolio registration 162114. FUNDING: The NIHR Health Technology Assessment programme.

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.

A qualitative analysis of the effectiveness of telehealthcare devices (i) are they meeting the needs of end-users?

BACKGROUND: There are many telehealthcare devices currently available ranging from personal alarms, automated pill dispensers and fall detectors through to monitoring devices for blood sugar, blood pressure and heart rate. Many devices remain unused once acquired or shortly after a period of initial use. METHODS: The study used a qualitative design involving focus groups and interviews. End users' opinions of telehealthcare devices were examined through focus groups along with the views of market experts and key supply chain players through telephone interviews to ascertain their views on the devices. The data were recorded, transcribed and analysed thematically. RESULTS: Amongst the wide range of user issues associated with telehealthcare devices two themes merited particular attention: design characteristics and the lack of focus on end-user needs. Our findings suggested that few telehealthcare devices appear to be developed based on the principles of user-centred design. Consequently, many were non-intuitive to use, with the majority of the focus group participants not recognising the purpose of the devices from their appearance alone. CONCLUSIONS: Greater input from real end-users rather than "proxy" users such as carers, professional users or technologists is required when developing telehealthcare devices or systems. Design should be focussed on intuitive use to enable the user to successfully achieve what is required from the devices. This may require the existing supplier-driven market focus to be challenged, but could improve the contribution of technology to improving healthcare.

A qualitative analysis of the effectiveness of telehealthcare devices (ii) barriers to uptake of telehealthcare devices.

BACKGROUND: Monitoring health and care needs through the use of telehealthcare devices has been proposed to help alleviate funding concerns in a climate of limited budgets. As well as improving cost effectiveness, such an approach could be used to help individuals live at home for longer. In practice however, these devices often go unused. A qualitative study was carried out to determine the barriers to uptake of these devices from both the perspective of the end user and from key players in the healthcare supply chain. METHODS: A qualitative approach was used involving focus groups and interviews. Two UK-based focus groups were held with users and potential users, to assess their views on the wide array of devices available. 27 individuals were involved in the groups, all over the age of 60. Additionally 27 telephone interviews were conducted with key supply chain players to ascertain their views on the barriers to uptake of these devices. A semi-structured interview guide was used. All data were audio-recorded, transcribed verbatim and analysed using a thematic approach. RESULTS: Users were generally unaware of the wide array of devices available and when shown a selection, were often unclear as to their purpose. The interviews revealed extensive barriers to uptake due to lack of awareness, unfamiliar terminology, complex supply routes and costs, resistance from professionals to device usage and lack of expertise. CONCLUSIONS: Public and professional awareness campaigns are required with appropriate funding mechanisms for users to gain access to devices. The numerous barriers identified require systematically addressing, so that device usage is better promoted, enabling individuals to live at home successfully for longer.

Disconnection: the user voice within the wound dressing supply chain.

AIM: This study examined the user voice in England's National Health Service (NHS) wound dressing supply chain. BACKGROUND: The impetus for this work came from involvement in a collaboration between industry and clinicians, entitled Woundcare Research for Appropriate Products. Experiences from that study highlighted the notable absence of research about the impact of the supply chain on the users of dressings. METHOD: Interview data are presented following an outline of the grounded theory method used. These data were obtained from key stakeholders (n = 41) within the wound dressing supply chain such as nurses, manufacturers, distributors, professional organizations, government organizations and user groups. RESULTS: The consequences of supply disconnection revealed haphazard supply, unmet user needs and lack of information transfer between player groups. CONCLUSIONS AND IMPLICATIONS FOR NURSING MANAGEMENT: These consequences explain the lack of user voice in the supply chain and have far-reaching implications for nursing management, through purchasing decisions and nurses' management of wound care.