1. Combining the strengths of UMIST and The Victoria University of Manchester ‘Feel your way and find your feet!’ Using case study research in palliative care Catherine Walshe Ann Caress Carolyn Chew-Graham Chris Todd

2. Combining the strengths of UMIST and The Victoria University of Manchester Choosing a research strategy Should be congruent with research topic, questions, and purpose Consider how strategies affect the research questions and their answers Should consider the skills of the researcher and the team

3. Combining the strengths of UMIST and The Victoria University of Manchester Referral in community palliative care – what do we already know? Referral trends No service cares for every palliative care patient in a locality. Percentage of patients using specialist services varies from 8% to 80% (Costantini et al 1993, Bruera et al 1999 ).

4. Combining the strengths of UMIST and The Victoria University of Manchester Referral in community palliative care – what do we already know? Patient characteristics Older people, those from black and ethnic minority populations, unmarried people, those who are economically disadvantaged, without home carers, with haematological or brain tumours, and with a non-cancer palliative condition are less likely to be referred to specialist palliative care services.

5. Combining the strengths of UMIST and The Victoria University of Manchester Referral in community palliative care – what do we already know? Referral timing Professionals argue that patients are referred too late to fully benefit from services offered (Austin et al 2000) Furthermore, some professionals appear to refer less readily than others (Lowden 1998)

6. Combining the strengths of UMIST and The Victoria University of Manchester Referral in community palliative care – what are the gaps in knowledge? Why there is such variation in referral patterns? How do different teams working in generalist and specialist palliative care work together and refer patients between themselves?

7. Combining the strengths of UMIST and The Victoria University of Manchester Investigating the use of community palliative care services Research questions: How are referral decisions made by healthcare professionals providing general and specialist community palliative care services within defined localities? Why do those providing general and specialist community palliative care services within defined localities make the referral decisions they do?

8. Combining the strengths of UMIST and The Victoria University of Manchester What is case study? “ A case study is an empirical inquiry that investigates a contemporary phenomenon within its real-life context, especially when the boundaries between phenomenon and context are not clearly evident” Case studies : Address complexity Use multiple sources of evidence Can use theoretical propositions (Yin 2003)

9. Combining the strengths of UMIST and The Victoria University of Manchester When would a case study be appropriate in palliative care? Complex situations Addressing context Recognising multiple perspectives Flexible study design needed

10. Combining the strengths of UMIST and The Victoria University of Manchester When would a case study be appropriate in primary care? Research directly congruent with a clinical practice approach No strong theory Other methodologies difficult to conduct

11. Combining the strengths of UMIST and The Victoria University of Manchester What is the case in this study? The case is ‘those services providing community general and specialist palliative care to patients registered or residing within a specified Primary Care Trust’.

12. Combining the strengths of UMIST and The Victoria University of Manchester The case study research strategy adopted

13. Combining the strengths of UMIST and The Victoria University of Manchester Theoretical propositions guiding the study Professional roles are constantly re-negotiated around individual patients care Caring for palliative care patients is ‘special’ and this affects referral and assessment choices Professionals have a sense of ownership and responsibility towards palliative care patients The culture and context of individuals, teams and organisations providing palliative care affects working patterns and local implementation of policies

14. Combining the strengths of UMIST and The Victoria University of Manchester Sampling – selecting cases and selecting data sources Choice of cases: 3 PCTs selected anticipating literal replication (predicting similar results) and theoretical replication (contrasting results, but for predictable reasons). Chosen with reference to *apparent* similarities in provision of services and demographic context.

15. Combining the strengths of UMIST and The Victoria University of Manchester Sampling – selecting cases and selecting data sources Case study Description of area served Population served (thousands) Socio- demographic features of the area Cancer deaths (as a proxy for palliative care need) Specialist palliative care provision within PCT area AIndustrial town100 – 120Predominantly white. 70% of wards (small electoral areas) in top 30% of deprived wards in country Average annual cancer deaths 310 – 330. Small voluntary hospice. Community specialist palliative care nurses, Hospice at home and Marie Curie nursing services. Consultant in palliative medicine. BIndustrial town250 – 27090% white population. 40% of wards in top 30% of deprived wards in country Average annual cancer deaths 640 - 660 Large voluntary hospice. Consultant in palliative medicine. Community specialist palliative care nurses, cancer coordinating service, Marie Curie nursing service. CUrban area130 – 15070% white population. 100% of wards in top 30% of deprived wards in country Average annual cancer deaths 210 – 240. Community specialist palliative care nurses.

16. Combining the strengths of UMIST and The Victoria University of Manchester Sampling – selecting cases and selecting data sources Interview data – purposeful and random selection Observational data – purposeful Documentary data Demographic data

17. Combining the strengths of UMIST and The Victoria University of Manchester Sampling – selecting cases and selecting data sources Case study General services Specialist servicesKey informantsPatients A5 (12) DNs 3(21) GPs 1(1) Nurse practitioner 4 (5) specialist nurses (1 consultant) 1 (1) commissioner (2 service managers) 1 B4 (8) DNs 3 (34) GPs 1 (1) AHP 3 (4) specialist nurses 2 (2) AHPs 1 (1) Consultant 1 (1) commissioner (1 cancer manager) 4 C 5 (12) DNs 6 (28) GPs 3 (3) specialist nurses 1(1) AHP 1 (1) Consultant 1 (2) cancer manager 1 (2) senior district nurse 5 Numbers in brackets = numbers invited to take part

18. Combining the strengths of UMIST and The Victoria University of Manchester Data analysis Initial within case data analysis: Interview: transcripts imported into Nvivo ® and coded with reference to developing descriptive/interpretive themes. Observation: detailed field notes recorded and imported into Nvivo ® and coded as above. Documents: imported into Nvivo ® where possible, or manually coded.

19. Combining the strengths of UMIST and The Victoria University of Manchester Pattern matching Cross-case analysis: Techniques from framework analysis to facilitate pattern matching. Matrices developed within Excel from the thematic data. Constant return to original sources required.

20. Combining the strengths of UMIST and The Victoria University of Manchester Pattern matching

21. Combining the strengths of UMIST and The Victoria University of Manchester Findings – interprofessional issues Two main issues How professionals perceive their own role in community palliative care How professionals perceive the roles of others in community palliative care And how these issues interacted

22. Combining the strengths of UMIST and The Victoria University of Manchester Professional beliefs about their own role in palliative care Ownership and autonomy Patients referred to in personal terms - ‘my’ Work to achieve it by negotiating early referrals, developing a relationship with patient Protective towards ‘their’ patients Concept of key worker

23. Combining the strengths of UMIST and The Victoria University of Manchester Professional beliefs about their own role in palliative care ‘There are other district nursing teams who would, sounds extreme, but rather die themselves than offer, then include this Hospice at Home… I think nurses can be very precious and territorial and so there has been conflict over the years about who’s doing what, whether our service is welcome or not’ (Specialist doctor)

24. Combining the strengths of UMIST and The Victoria University of Manchester Professional beliefs about their own role in palliative care GP – ‘ I would say the GP would coordinate it….its our responsibility and duty to do that’ (GP) DN – ‘ I think it tends to be the district nurse…you tend to be the central one’ (DN) Specialist – ‘Often things are not lacking or people are not joining together, and I feel sometimes we become a key worker’ (Specialist nurse)

25. Combining the strengths of UMIST and The Victoria University of Manchester Professionals perception of the person to whom they are referring the patient or accepting the referral from Variability Professed to be unaware of how others in their field worked Aware of variability in both working practices and skills and expertise This affected outward referral practices and the way they accepted referrals

26. Combining the strengths of UMIST and The Victoria University of Manchester Professionals perception of the person to whom they are referring the patient or accepting the referral from ‘If you know that you have got other professionals who perhaps don’t provide the same standard of care as other professionals…in which case I might prioritise that over and above somebody that I know has got a good district nurse going in.’ (Specialist nurse)

27. Combining the strengths of UMIST and The Victoria University of Manchester Professionals perception of the person to whom they are referring the patient or accepting the referral from Negotiating care Developing an ‘etiquette of referral’ Recognised that relationships between professionals had to endure beyond the care of an individual patient Referral order important to this etiquette

28. Combining the strengths of UMIST and The Victoria University of Manchester Professionals perception of the person to whom they are referring the patient or accepting the referral from ‘The relationships with the GPs is very much feel your way and find your feet, that way you see just how far you can go and how far you can’t go. Because, I think the problem is once you have blown it with a GP you’ve blown it and that is it, it’s not easy to get back in with them.’ (Specialist nurse)

29. Combining the strengths of UMIST and The Victoria University of Manchester Professionals perception of the person to whom they are referring the patient or accepting the referral from Judging other professionals Referrals predicated on critical judgement of professionals past performance Notion of ‘good’ and ‘bad’ professionals – used techniques to sideline ‘bad’ professionals

30. Combining the strengths of UMIST and The Victoria University of Manchester Professionals perception of the person to whom they are referring the patient or accepting the referral from ‘We just get on and do what we want to do, and we get done what we want to happen without battling against a GP….anything that we want for these patients we manage to get round and to get between us all…we are not that bothered that the GPs don’t have that big an input.’ (District Nurse)

31. Combining the strengths of UMIST and The Victoria University of Manchester Professionals perception about what the referral can add to their care of the patient Expertise Assessment of own and others expertise Again based on past experiences of the use of others skills and expertise and knowledge

32. Combining the strengths of UMIST and The Victoria University of Manchester Professionals perception about what the referral can add to their care of the patient ‘What proportion of your palliative care patients would you refer to the community Macmillan nurses? Very few, because I think my GPs have had a problem with the Macmillan nurses in the past, I don’t think they particularly liked the way she worked….now the rest of the staff in (Case Study area) don’t use them very much really. Quite often they were never there to give the advice that you wanted’. (District Nurse)

33. Combining the strengths of UMIST and The Victoria University of Manchester Professionals perception about what the referral can add to their care of the patient Time Belief that specialists have more time Perception of own stretched resources, and the impact of this versus Prioritisation of palliative care patients

34. Combining the strengths of UMIST and The Victoria University of Manchester Professionals perception about what the referral can add to their care of the patient ‘they were quite aware of when the Macmillan nurse went out, how much longer they spent there…as a district nurse, we would go in and maybe half an hour and come away again’ (DN) ‘ Although we have been really short staffed we are proud of ourselves that we have been able to deliver high standards of palliative care, but consequently other things have had to go’ (DN)

35. Combining the strengths of UMIST and The Victoria University of Manchester Conclusions Community professionals are autonomous and self sufficient, and this can act against teamwork and onward referrals Has to be a real belief in the added benefit of teamwork for this to be seen in practice Consideration needs to be given to the role of professionals providing community palliative care, and how they can best work together to provide care

36. Combining the strengths of UMIST and The Victoria University of Manchester Conclusions for practice Attention needs to be paid to how to influence professional (s) behaviour. There should be overt awareness of variability in practice, and discussion and debate of its appropriateness. The use of referral guidelines and protocols will not affect referral behaviour, unless attention is paid to these issues

37. Combining the strengths of UMIST and The Victoria University of Manchester References Further reading about this study: Walshe C., Caress A., Chew-Graham C. & Todd C. (2008) Implementation and impact of the Gold Standards Framework in community palliative care: a qualitative study of three Primary Care Trusts. Palliative Medicine 22, 736- 743. Walshe C., Todd C., Caress A. & Chew-Graham C. (2008) Judgements about fellow professionals and the management of patients receiving palliative care in primary care: a qualitative study. British Journal of General Practice 58, 264-272. Walshe C., Chew-Graham C., Todd C. & Caress A. (2008) What influences referrals within community palliative care services? A qualitative case study. Social Science & Medicine 67, 137-146. Further reading regarding case study research: Bergen A. & While A. (2000) A case for case studies: exploring the use of case study design in community nursing research. Journal of Advanced Nursing 31, 926-934. Gomm R., Hammersley M. & Foster P. (2000) Case study method. Key issues, Key Texts. Sage publications ltd., London. Jowett S. (1997) Review: Designing and conducting case study research in nursing. NT Research 2, 57-58. Payne S., Field D., Rolls L., Hawker S. & Kerr C. (2007) Case study research methods in end-of-life care: reflections on three studies. Journal of Advanced Nursing 58, 236-245. Stake R.E. (1995) The art of case study research. Sage, Thousand Oaks. Walshe C.E., Caress A.L., Chew-Graham C. & Todd C.J. (2004) Case studies: a research strategy appropriate for palliative care? Palliative Medicine 18, 677-684. Yin R.K. (2003) Case study research. Design and Method, Third edn. Sage, Thousand Oaks.