What influences referrals in community palliative care services? A case study.

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What influences referrals in community palliative care services? A case study.

Catherine Walshe

PhD

2006-12

The University of Manchester

445

Table of contents Table of contents 2 List of tables 6 List of figures 7 List of appendices 8 Abstract 9 Declarations 10 Acknowledgements 12 The author 13Chapter one Introduction to the study 1.1 Introduction 16 1.2 Defining palliative care and its provision 17 1.3 Equitable access to care 19 1.4 The policy background to the study 21 1.5 Summary 23Chapter two Literature review 2.1 Review strategy 25 2.1.1 Search strategy 25 2.2 Critically appraising the studies reviewed 27 2.3 The structure of the literature review 29 2.3.1 When are patients referred to community palliative care services? 29 2.3.2 How many patients are referred to community palliative care services? 44 2.3.3 Which patients are referred to community palliative care services? 62 2.3.3.1 Demographic information 62 2.3.3.2 Social information 67 2.3.3.3 Medical information 70 2.3.3.4 Summary 73 2.3.4 What reasons are given for referral to community palliative care services, and who makes these referrals? 104 2.3.5 What factors act as barriers to or facilitate referrals from professionals to community palliative care services? 113 2.3.5.1 Professional factors affecting referrals 113 2.3.5.2 Organisational factors affecting referrals 118 2.3.5.3 Patient factors affecting referrals 119 2.3.6 What are patients??? and carers??? views on referral to community palliative care services? 139 2.4 Summary of literature review 153Chapter three Research methods ??? choice of method 3.1 Introduction 158 3.2 Research aims and objectives 158 3.3 Study design 160 3.3.1 Choosing an appropriate design 160 3.3.2 Case study strategies and the research questions 163 3.3.2.1 Defining case study 163 3.3.2.2 The appropriateness of a case study strategy 164 3.4 Summary 169Chapter four Research methods ??? working methods 4.1 Introduction 172 4.2 Study propositions 172 4.3 Defining the case 173 4.4 Sample 175 4.4.1 Choice of cases 175 4.4.2 Choice of data sources 177 4.5 Identifying data sources within the cases 178 4.5.1 Sampling and recruitment of professional participants 178 4.5.2 Sampling and recruitment of patient participants 182 4.5.3 Conduct of the interviews 184 4.5.4 Collecting observational and documentary evidence 185 4.5.5 Collecting contextual and epidemiological data 186 4.5.6 Reflexivity 186 4.6 Ethical considerations 187 4.6.1 Harm 187 4.6.2 Consent 188 4.6.3 Deception 188 4.6.4 Privacy and confidentiality 189 4.6.5 Research governance and ethics approval 190 4.7 The data collected 190 4.7.1 Issues of data collection 195 4.8 Data analysis 197 4.8.1 Components of data analysis 197 4.8.2 Familiarisation 199 4.8.3 Creating a thematic framework 199 4.8.4 Indexing 200 4.8.5 Charting 201 4.8.6 Mapping and interpretation 202 4.9 Methodological rigour 202 4.10 Summary 203Chapter five The cases and their contexts 5.1 Introduction 206 5.2 The geography and demography of the Primary Care Trusts 207 5.3 Potential need for palliative care provision 209 5.4 The organisation and provision of palliative care services within the case study sites 210 5.5 Summary 219Chapter six Making referrals within community palliative care services 6.1 Introduction to the research findings 222 6.2 Reasons for referrals to community palliative care services 223 6.2.1 Social reasons for referrals to community palliative care services 224 6.2.2 Psychological reasons for referrals to community palliative care services 229 6.2.3 Physical reasons for referrals to community palliative care services 234 6.3 Referral issues 237 6.3.1 Appropriateness of referrals 237 6.3.2 Controlling access to services 242 6.3.3 Reluctant referrers 244 6.3.4 Timing of referrals 246 6.3.5 Patients??? characteristics 250 6.3.6 Patient choice: the perspective of professionals and patients 253 6.4 Summary 256Chapter seven Professionals??? perceptions of their own roles in palliative care 7.1 Introduction 259 7.2 Autonomy and self management 259 7.3 Ownership 265 7.3.1 Building a relationship with patients and families 271 7.4 Expertise in palliative care 278 7.5 Workload issues 282 7.6 Status of palliative care work 288 7.7 Summary 292Chapter eight Working with other professionals in palliative care 8.1 Introduction 295 8.2 Knowing about other services 295 8.3 Negotiating team roles 301 8.3.1 Concepts of teamwork 302 8.3.2 Negotiating and building relationships between professionals 307 8.3.3 Team leadership and the key worker role 311 8.4 Judging other professionals 318 8.5 Summary 328Chapter nine Discussion and conclusions 9.1 Introduction 331 9.2 Review of the thesis 331 9.3 Theoretical propositions 333 9.4 Discussion 336 9.4.1 Professional judgement and autonomy 336 9.4.2 Collaboration, teamwork and partnership 342 9.4.3 Professional relationships 345 9.4.4 Equity 350 9.5 Critique of research 352 9.6 Recommendations for further research 357 9.7 Recommendations for policy, practice and education 358 9.8 The contribution of the thesis 359 9.9 Conclusions 361 References 363 Appendices 396

Equity of access to healthcare services is a concept which underpins current UK health policy. However evidence suggests that this is not achieved within community palliative care. Referrals can be tardy or not made at all. Most literature describes inequality in service utilisation, but does not aid understanding of why such inequalities exist. There is little research exploring the processes underpinning referral making rather than the outcomes of referrals such as service utilisation.The aim of this research was to investigate the influences on referral decisions made within community palliative care services. A qualitative case study strategy was chosen as the research approach as it provided a framework for facilitating the incorporation of multiple perspectives in a complex context, in a field where there has been little previous research, and where there is little theory to guide the investigation. Three cases (Primary Care Trusts) were studied. Data collection used multiple methods (interviews, observation and documentary analysis, as well as mapping and profiling the palliative care services provided within the cases) from multiple perspectives (general and specialist palliative care professionals, managers, commissioners and patients). Detailed data analysis followed a framework approach, comparing and contrasting patterns within and across cases with existing and developing theoretical propositions. Two core influences on the way health care professionals made referral decisions were found. First, their perception of their own role in providing palliative care. Autonomous professionals made independent judgements about referrals, influenced by their expertise, workload, the special nature of palliative care and the relationship they developed with patients. Second, their perception about those to whom they may refer. Professionals needed to know about services to refer, and then made a complex judgement about the professionals involved and what they could offer the referrer as well as the patient. These findings indicate that many more factors than an assessment of patients??? clinical need affect referrals within community palliative care services. It appears that personal, inter-personal and inter-professional factors have the potential to shape referral practices. It may be that the combination of these factors has an influence on equitable access to community palliative care services. Practitioners could be more explicit about referral or non-referral rationales, and policy makers take account of these complex influences on referrals rather than just mandating change.

• palliative care
• primary care
• access

• Walshe, Catherine

• Faculty of Medical and Human Sciences
• School of Nursing, Midwifery and Social Work

uk-ac-man-scw:77832

Walshe, Catherine

16th March, 2010, 12:53:04

Walshe, Catherine

16th March, 2010, 12:53:04