HOPE AND INFORMATION PROJECT INTERVIEWER GUIDE: NURSE RESPONDENTS

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1 HOPE AND INFORMATION PROJECT INTERVIEWER GUIDE: NURSE RESPONDENTS INTRODUCTION: We wuld like t learn abut hw nurses and dctrs wrk with patients in their need fr hpe, n the ne hand, and infrmatin abut their illness, n the ther. As yu knw, [patient name] has enrlled in this prject and suggested that we talk t yu. We d like t ask yu abut hpe and infrmatin in yur clinical wrk with them. But befre we start talking abut [patient name], we d like t find ut what yu think generally abut the balance f hpe and infrmatin in clinical wrk with patients with a life-threatening illness. 1. Medical literature suggests that many nurses are challenged by the need t prvide patients with accurate infrmatin, n the ne hand, while maintaining patient hpe n the ther hand. What d yu think abut this statement? Have yu experienced a challenge r tensin in prviding bth hpe and infrmatin t yur patients? Hw much d yu find that tensin cncerns yu? Hw d yu deal with it? 2. Nw let s talk first abut [patient name]. Can yu tell me abut yur relatinship with this patient? Tell me briefly hw his/her illness has gne. HOPE: 3. Is hpe imprtant t this patient? What des he/she hpe fr? Hw have yu apprached this patient s need fr hpe? Has this patient s hpe changed ver time? [if s, hw?] Is hpe a gd thing fr this patient t have? 4. D yu knw if this patient has talked with his/her dctr abut his/her hpes? If yes, can yu tell me mre abut that? If n, d yu think this patient wuld like t talk with his/her dctr abut his/her hpes? Why r why nt? Hpe&Inf Nurse Interview Guide UW End-f-Life Care Research Prgram 1

2 DEATH & DYING CONCERNS: 5. Has this patient talked abut his/her prgnsis with yu? If s, hw did the tpic cme up? What did yu say and hw did he/she respnd? 6. D yu knw if this patient has talked abut his/her prgnsis with his/her dctr? If yes, hw did the patient feel abut that cnversatin? If n, d yu get the sense he/she wuld like t have that cnversatin? 7. Des this patient want t knw that his/her illness may be terminal? What led yu t that cnclusin? 8. Have yu talked abut death and dying with this patient? If NO, why nt? Hw cncerned is this patient with dying? Hw d yu knw? Hw des he/she express his/her cncern? Hw did yu respnd? Hw des this affect yur cmmunicatin/infrmatin sharing with the patient? D yu think talking abut death and dying has affected this patient? Hw? 9. In yur estimatin, hw cncerned is this patient abut dying? Hw des he/she express his/her cncern? Hw d yu respnd? ABANDONMENT VS REASSURANCE: 10. Has this patient expressed t yu things that are imprtant t him/her, such as family, maintaining hpe, reaching sme milestne, r anything else? 11. Have yu been able t ffer this patient emtinal supprt? Hw were yu able t d that? Hpe&Inf Nurse Interview Guide UW End-f-Life Care Research Prgram 2

3 AVOIDANCE OF TRUTH VS FULL DISCLOSURE: 12. If yu had t characterize this patient s need fr infrmatin n the fllwing cntinuum, where wuld yu put him/her? I prefer t have all the infrmatin abut my illness. I prefer that the dctr decide hw much infrmatin t give me abut my illness. I prefer that the dctr and I decide tgether hw much infrmatin I will have abut my illness. 13. Hw did yu figure that ut fr this patient? What cues did yu use? (Prbe affective and cgnitive cues) 14. Hw imprtant d yu think receiving infrmatin including prgnsis and any bad news is t this patient? 15. Hw much infrmatin have yu given this patient abut his/her illness? What is the nature f the infrmatin yu have given the patient? Prbe types f infrmatin: diagnsis, prgnsis, treatment 16. Hw have yu apprached this patient s need fr infrmatin? 17. D yu think this patient has received as much infrmatin abut his/her illness and prgnsis as he/she wants? Can yu give me a situatin r example f infrmatin sharing with this patient? Ask abut situatin that is different than the ne described. If talks abut psitive situatin, ask abut any that haven t gne as smthly. If talks abut difficult situatin, ask abut ne that went mre smthly. 18. Have yu ever been hesitant t give bad news t this patient? What were yur cncerns/perceived risks f giving infrmatin? Prbe fears f destrying patient s hpe. Hw did that affect what yu did and said with this patient? 19. D yu think that ther health care prviders have been hesitant t give bad news t this patient? Tell me mre abut that. Hpe&Inf Nurse Interview Guide UW End-f-Life Care Research Prgram 3

4 20. Have yu ever fund yurself being mre ptimistic than is warranted with this patient? What led yu t be verly ptimistic with this patient? Prbe hw related t hpe. 21. Nw that we ve talked abut this patient s infrmatin needs, I d like t ask yu abut hw treatment decisins are made. If yu had t characterize this patient s preference arund treatment decisins n the fllwing cntinuum, where wuld yu put him/her? I prefer t make the final selectin f my treatment after seriusly cnsidering my dctr s pinin. I prefer that my dctr makes the final decisin abut my treatment, but seriusly cnsiders my pinin. I prefer that my dctr and I share respnsibility fr deciding which treatments are best fr me. Hw did yu figure that ut fr this patient? What cues did yu use? (Prbe affective and cgnitive cues). BALANCE HOPE/INFORMATION VS. TENSION: At the beginning f this cnversatin, yu talked abut managing hpe and infrmatin with patients with life threatening illnesses. Nw thinking abut this patient 22. With this patient, d yu feel a tensin between the need t prvide hpe n the ne hand, and realistic infrmatin n the ther? Hw have yu handled that tensin with this patient? Hw d yu balance hpe and infrmatin with this patient? 23. Thrughut this patient s medical care whether frm yu, his/her physicians, r anyne else d yu think that the patient s need fr hpe, infrmatin, r a balance f the tw has been handled well? What culd have been dne better? 24. D yu think yu have dne a gd jb with this patient in managing hpe and infrmatin? Why r why nt? What is a gd jb? Hw d yu knw yu ve dne a gd jb? Hpe&Inf Nurse Interview Guide UW End-f-Life Care Research Prgram 4

5 FAMILY MEMBERS: 25. Hw has this patient s family been invlved in his/her care? Hw imprtant has this patient s family been in his/her care? What rle has the family played in his/her hpe? 26. D the patient and his/her family seem t be n the same page abut their need fr hpe and infrmatin? Tell me mre abut that. What tells yu that they are/are nt n the same page? 27. Have yu talked with the family abut the patient? If yes, have yu talked abut the family s hpes fr the patient? If yes, have yu given the family infrmatin abut the patient s illness and prgnsis? 28. With this family, d yu feel a tensin between the need t prvide hpe, n the ne hand, and realistic infrmatin abut the patient s illness n the ther? If yes, hw have yu handled that tensin with this family? Hw have ther health care prviders wh wrk with the family handled that tensin? GENERAL QUESTIONS: (Prbe examples and specific situatins) 29. Based n yur experiences wrking with patients with terminal illnesses, d yu have an apprach yu use t address dying patients need fr hpe, n the ne hand, and full infrmatin abut their illness and prgnsis, n the ther hand? 30. In general, hw imprtant wuld yu say nurses are in sustaining patients hpe? 31. Hw imprtant are nurses in prviding patients with infrmatin abut their illness? 32. If yu were asked t give sme suggestins fr nurses in helping patients with terminal illnesses cpe with the need fr hpeful and realistic infrmatin, what wuld yu be sure t include? Hpe&Inf Nurse Interview Guide UW End-f-Life Care Research Prgram 5

6 33. If yu were asked t give sme suggestins fr dctrs in helping patients with terminal illnesses cpe with the need fr hpe and realistic infrmatin, what wuld yu include? 34. Hw culd systems r clinical teams wrk better arund handling hpe and infrmatin with patients with life-threatening illnesses? 35. When it cmes t patient s need fr hpe and infrmatin, what d nurses tend t d well and what culd they d better? 36. What are the barriers t cmmunicating hpe and infrmatin t patients with lifethreatening illness? Prbe: time cnstraints, pr cmmunicatin with MD, system issues. 37. Hw culd systems r clinical teams wrk better arund handling hpe and infrmatin with patients with life-threatening illnesses? 38. D yu have a philsphy r belief system that influences the way yu prvide care t peple with life-threatening illnesses? 39. Is there anything else that yu feel we shuld knw abut yur experience in balancing hpe and infrmatin with patients with life threatening illnesses? DIAGRAMS: I m ging t shw yu three figures, with stries frm patients wh explain hw they deal with their illness. I d like t get yur reactins t these. Lk at these diagrams and qutes. Alternate existence f hpe and truth Balance f hpe and truth Harmnius integratin f hpe and truth Redirectin f hpe 6 Hpe&Inf Nurse Interview Guide UW End-f-Life Care Research Prgram

7 Qutes: 1) It s been hard since I heard the bad news abut my disease. Smetimes I feel very hpeful and think psitively abut the future. Other times, I feel fearful and sad because I knw hw serius my illness is. I seem t g back and frth between thse tw feelings. 2) I have t keep things balanced. I want infrmatin abut my illness, but t much infrmatin makes me depressed. Als, I want t be hpeful but I knw that I can t be t hpeful because that s nt realistic. S I kind f maintain a balance between the tw. 3) I seem t be able t hear bad news abut my illness and yet hld nt hpe bth at the same time. I knw that my illness is very serius, and yet I als knw that I must maintain my hpe, and smehw I m able t d bth f thse. They re bth there at the same time. 4) I used t hpe fr survival but nw what s imprtant t me has changed. Nw I hpe fr ther things. Nw I d like t talk abut [patient name]. Which f these d yu feel best describes the experience that [patient name] has had? What wuld be helpful fr a nurse t d t with a patient wh felt this way? What wuld be helpful fr a dctr t d with a patient wh felt this way? Hw have yu addressed this reactin with this patient? Hpe&Inf Nurse Interview Guide UW End-f-Life Care Research Prgram 7

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