but NS was: wake-up white cells was that could have infection…” “a call…my low…I died…”. Terms like blood infection/poisoning or sepsis/septicaemia created better understanding. Some patients preferred explicit explanations of NS and the risk of death, whilst others preferred softer messages focused on personal benefits of acting quickly (examples: supplementary table 9). The word sepsis was enough to get Jackie to take it seriously: Researcher: neutropenic sepsis. Have you heard of that? … Jackie: No...what is that? Researcher: you get an infection your fight it and you can get a secondary …if body can’t thing neutropenic sepsis...it gets into your blood stream … Jackie: ahh Researcher: sort of blood poisoning. …it’s Jackie: Septicaemia. Jackie: from it...I know how serious it is have probably waited …mum died so...wouldn’t that long…” Category four: Relationships core to accessing help Poor relationships with clinicians dissuaded patients from reporting NS (Property 4.1: Chemotherapy nurses who answered the helpline, did not support Bothering the helpline). effect management and were perceived as: for relationship “…rushed…technical…no…space (Melanie). Sam did not call the chemotherapy nurses because: that building” “…they don’t…have Alice described an: [with a relationship with “… uneasy relationship…” doctor] “...[who] you…”. your blood count is to come back phoned…said incredibly low...you’ve got today...I refused…”. Clinicians found the (Doctor 4) and some clinicians helpline a burden that: on “…keeps ringing…” failed to: 2). Poor experiences of the helpline dissuaded future (Doctor “…respond appropriately” but failed to call back after previously being directed to A&E. I was use. Helen: “thought dying” Helen felt: patients just the side-effects…I time I feel Some “…It’s can’t keep ringing…every ill”.
infection…” but NS was: “a wake-up call…my white cells was that low…I could have died…”. Terms like blood infection/poisoning or sepsis/septicaemia created better understanding. Some patients preferred explicit explanations of NS and the risk of death, whilst others preferred softer messages focused on personal benefits of acting quickly (examples: supplementary table 9). The word sepsis was enough to get Jackie to take it seriously: Researcher: … neutropenic sepsis. Have you heard of that? Jackie: No...what is that? Researcher: …if you get an infection your body can’t fight it and you can get a secondary thing … neutropenic sepsis...it gets into your blood stream Jackie: ahh Researcher: …it’s sort of blood poisoning. Jackie: Septicaemia. Jackie: …mum died from it...I know how serious it is so...wouldn’t have probably waited that long…” Category four: Relationships core to accessing help Poor relationships with clinicians dissuaded patients from reporting NS (Property 4.1: Bothering the helpline). Chemotherapy nurses who answered the helpline, did not support management and were perceived as: “…rushed…technical…no…space for relationship building” (Melanie). Sam did not call the chemotherapy nurses because: “…they don’t…have that relationship with you…”. Alice described an: “… uneasy relationship…” [with a doctor] “...[who] phoned…said your blood count is incredibly low...you’ve got to come back today...I refused…”. Clinicians found the helpline a burden that: “…keeps on ringing…” (Doctor 4) and some clinicians failed to: “…respond appropriately” (Doctor 2). Poor experiences of the helpline dissuaded future use. Helen: “thought I was dying” but failed to call back after previously being directed to A&E. Helen felt: “…It’s just the side-effects…I can’t keep ringing…every time I feel ill”. Some patients effect