Catherine Walshe

Patterns of Access to Community Palliative Care Services: A Literature Review

Policies state that access to palliative care should be provided according to principles of equity. Such principles would include the absence of disparities in access to health care that are systematically associated with social advantage. A review of the literature a decade ago identified that patients with different characteristics used community palliative care services in variable ways that appeared inequitable. The objective of this literature review was to review recent literature to identify whether such variability remains. Searching included the use of electronic databases, scrutinizing bibliographies, and hand searching journals. Articles were included if they were published after 1997 (the date of the previous review) up to the beginning of 2008, and if they reported any data that investigated the characteristics of adult patients in relation to their relative utilization of community palliative care services, with reference to a comparator population. Forty-eight studies met the inclusion criteria. Patients still access community palliative care services in variable ways. Those who are older, male, from ethnic minority populations, not married, without a home carer, are socioeconomically disadvantaged, and who do not have cancer are all less likely to access community palliative care services. These studies do not identify the reasons for such variable access, or whether such variability is warranted with reference to clinical need or other factors. Studies tend to focus on access to specialist palliative care services without looking at the complexities of service use. Studies need to move beyond description of utilization patterns, and examine whether such patterns are inequitable, and what is happening in the referral or other processes that may result in such patterns.

Case studies: A research strategy appropriate for palliative care?

Selecting an appropriate research strategy is key to ensuring that research questions are addressed in a way which has value and is congruent with the overall topic, questions and purpose of the research. This paper will argue that there are situations when a case study strategy is appropriate to use in palliative care research. These include: when complex situations need to be addressed; when context is central to the study; when multiple perspectives need to be recognized; when the design needs to be flexible; when the research needs to be congruent with clinical practice; when there is no strong theory to which to appeal; and when other methodologies could be difficult to conduct. Using case study strategies rigorously and appropriately can contribute to knowledge in a way which is sensitive to the complex, context-dependent and multiprofessional nature of palliative care.

Implementation and impact of the Gold Standards Framework in community palliative care: a qualitative study of three primary care trusts:

The Gold Standards Framework (GSF) has been widely adopted within UK general practices, yet there is little understanding of its impact on the provision of community palliative care services. This study presents data on the anticipation and adoption of the GSF within three Primary Care Trusts in North West England. Forty-seven interviews were conducted with generalist and specialist palliative and primary care professionals. Important aspects of the GSF identified were the patient register, communication and out-of-hours protocols. Positive benefits to professionals included improved communication between professionals and appropriate anticipatory prescribing. Negative aspects included increased nursing workload and the possibility of fewer or later visits for patients. Many respondents believed that the GSF needed local champions to be sustainable. Slow or incomplete adoption was reported. The GSF was recognised as important because it facilitated changes to previously difficult aspects of work between professionals, but few respondents reported direct benefits to patient care.

Improving training in spiritual care: a qualitative study exploring patient perceptions of professional educational requirements.

Healthcare professionals express difficulties in delivering spiritual care, despite it being a core component of palliative care national policies. The patient perspective on professional training to address difficulties has not previously been sought. The aim of this study is to describe patient suggestions for development of training to deliver spiritual care. Qualitative semi-structured in-depth ‘palliative patient’ interviews (n = 20) were analysed thematically. Training suggestions encompassed practical care delivery. Patients supported staff who introduced questions about spiritual needs, and they expected opportunities to engage in spiritual care discussions. The ‘right’ attitude for spiritual care delivery was defined as being non-judgemental, providing integrated care and showing interest in individuals. Training issues included patient perspectives of boundaries between personal and professional roles. This study provides ‘palliative patient’ perspectives to strengthen recommended models of spiritual care delivery. It shows that user opinions on training can be helpful not only in deciding objectives but also how to achieve them.

The views of patients with severe chronic obstructive pulmonary disease on advance care planning:a qualitative study

Background: Chronic obstructive pulmonary disease (COPD) is a major cause of death worldwide and there are concerns that end-of-life care for these patients is inadequate. Advance care planning is encouraged, with the hope that it will improve communication and avoid unwanted interventions, which have been particular concerns; in practice, these discussions rarely occur. We have little knowledge of the views of patients with COPD on advance care planning. Understanding this could help integrate advance care planning into the routine management of patients with COPD. Aim: To explore the views of people with severe COPD about advance care planning. Design: Qualitative design, with data collection incorporating audio recorded semi-structured interviews. Analysis followed a grounded theory approach. Setting/participants: Patients with severe COPD (n =10, Gold Standards Framework criteria) were recruited from primary and secondary care settings. Results: Participants felt they had not been given enough information about their diagnosis and prognosis, and were keen for more discussion with healthcare professionals. They wanted more involvement in decisions about their treatment when those decisions were required. Participants were happy to discuss their general views about future care, but felt uncomfortable with the traditional model of binding ‘advance directives’. Conclusions: Considering advance care planning as a repeated process of discussion of prognosis, concerns and probable preferences for care would be more useful than encouraging binding advance decisions. Further research should assess the effectiveness of this approach. Local coordination of who is responsible for information provision is needed, and greater involvement of patients with COPD in management decisions as they arise.

The evaluation of complex interventions in palliative care:an exploration of the potential of case study research strategies

Background: Complex, incrementally changing, context dependent and variable palliative care services are difficult to evaluate. Case study research strategies may have potential to contribute to evaluating such complex interventions, and to develop this field of evaluation research. Aim: This paper explores definitions of case study (as a unit of study, a process, and a product) and examines the features of case study research strategies which are thought to confer benefits for the evaluation of complex interventions in palliative care settings. Results: Ten features of case study that are thought to be beneficial in evaluating complex interventions in palliative care are discussed, drawing from exemplars of research in this field. Important features are related to a longitudinal approach, triangulation, purposive instance selection, comprehensive approach, multiple data sources, flexibility, concurrent data collection and analysis, search for proving-disproving evidence, pattern matching techniques and an engaging narrative. The limitations of case study approaches are discussed including the potential for subjectivity and their complex, time consuming and potentially expensive nature. Conclusions: Case study research strategies have great potential in evaluating complex interventions in palliative care settings. Three key features need to be exploited to develop this field: case selection, longitudinal designs, and the use of rival hypotheses. In particular, case study should be used in situations where there is interplay and interdependency between the intervention and its context, such that it is difficult to define or find relevant comparisons.

Using observation as a data collection method to help understand patient and professional roles and actions in palliative care settings

Background: Observational research methods are important for understanding people’s actions, roles and behaviour. However, these techniques are underused generally in healthcare research, including research in the palliative care field. Aim: The aim in this paper is to place qualitative observational data collection methods in their methodological context and provide an overview of issues to consider when using observation as a method of data collection. This paper discusses practical considerations when conducting palliative care research using observation. Findings: Observational data collection methods span research paradigms, and qualitative approaches contribute by their focus on ‘natural’ settings which allow the explanation of social processes and phenomena. In particular, they can facilitate understanding of what people do and how these can alter in response to situations and over time, especially where people find their own practice difficult to articulate. Observational studies can be challenging to carry out: we focus on the potentially problematic areas of sampling, consent and ethics, data collection and recording, data management and analysis. Conclusion: Qualitative observational data collection methods can contribute to theoretical and conceptual development and the explanation of social processes in palliative care. In particular this contribution to understanding care structures and processes should improve understanding of patients’ experiences of their care journey and thus impact on care outcomes.

Protocol for a longitudinal qualitative interview study: maintaining psychological well-being in advanced cancer—what can we learn from patients’ and carers’ own coping strategies?

Introduction People with advanced cancer and their carers experience stress and uncertainty which affects the quality of life and physical and mental health. This study aims to understand how patients and carers recover or maintain psychological well-being by exploring the strategies employed to self-manage stress and uncertainty. Methods and analysis A longitudinal qualitative interview approach with 30 patients with advanced cancer and 30 associated family or informal carers allows the exploration of contexts, mechanisms and outcomes at an individual level. Two interviews, 4–12 weeks apart, will not only enable the exploration of individuals’ evolving coping strategies in response to changing contexts but also how patients’ and carers’ strategies inter-relate. Patient and Carer focus groups will then consider how the findings may be used in developing an intervention. Recruiting through two major tertiary cancer centres in the North West and using deliberately broad and inclusive criteria will enable the sample to capture demographic and experiential breadth. Ethics and dissemination The research team will draw on their considerable experience to ensure that the study is sensitive to a patient and carer group, which may be considered vulnerable but still values being able to contribute its views. Public and patient involvement (PPI) is integral to the design and is evidenced by: a research advisory group incorporating patient and carers, prestudy consultations with the PPI group at one of the study sites and a user as the named applicant. The study team will use multiple methods to disseminate the findings to clinical, policy and academic audiences. A key element will be engaging health professionals in patient and carer ideas for promoting self-management of psychological well-being. The study has ethical approval from the North West Research Ethics Committee and the appropriate NHS governance clearance. Registration National Institute for Health Research (NIHR) Clinical Studies Portfolio, UK Clinical Research Network (UKCRN) Study number 11725.

What are the views of hospital-based generalist palliative care professionals on what facilitates or hinders collaboration with in-patient specialist palliative care teams? A systematically constructed narrative synthesis:

Background: Hospital-based specialist palliative care services are common, yet existing evidence of inpatient generalist providers’ perceptions of collaborating with hospital-based specialist palliative care teams has never been systematically assessed. Aim: To assess the existing evidence of inpatient generalist palliative care providers’ perceptions of what facilitates or hinders collaboration with hospital-based specialist palliative care teams. Design: Narrative literature synthesis with systematically constructed search. Data sources: PsycINFO, PubMed, Web of Science, Cumulative Index of Nursing and Allied Health Literature and ProQuest Social Services databases were searched up to December 2014. Individual journal, citation and reference searching were also conducted. Papers with the views of generalist inpatient professional caregivers who utilised hospital-based specialist palliative care team services were included in the narrative synthesis. Hawker’s criteria were used to assess the quality of the included studies. Results: Studies included (n = 23) represented a variety of inpatient generalist palliative care professionals’ experiences of collaborating with specialist palliative care. Effective collaboration is experienced by many generalist professionals. Five themes were identified as improving or decreasing effective collaboration: model of care (integrated vs linear), professional onus, expertise and trust, skill building versus deskilling and specialist palliative care operations. Collaboration is fostered when specialist palliative care teams practice proactive communication, role negotiation and shared problem-solving and recognise generalists’ expertise. Conclusion: Fuller integration of specialist palliative care services, timely sharing of information and mutual respect increase generalists’ perceptions of effective collaboration. Further research is needed regarding the experiences of non-physician and non-nursing professionals as their views were either not included or not explicitly reported.

'Busyness' and the preclusion of quality palliative district nursing care

Ethical care is beginning to be recognised as care that accounts for the views of those at the receiving end of care. However, in the context of palliative and supportive district nursing care, the patients’ and their carers’ views are seldom heard. This qualitative research study explores these views. Data were collected through semi-structured interviews with 26 patients with palliative and supportive care needs receiving district nursing care, and 13 of their carers. Participants were recruited via community nurses and hospices between September 2010 and October 2011. Post-structural discourse analysis is used to examine how discourses operate on a moral level. One discourse, ‘busyness’, is argued to preclude a moral form of nursing care. The discourse of friendship is presented to contrast this. Discussion explores Gallagher’s ‘slow ethics’ and challenges the currently accepted ways of measuring to improve quality of care concluding that quality cannot be measured.