The new normal delivering information about oral chemotherapy in the clinic

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1 The new normal delivering information about oral chemotherapy in the clinic RCN Nursing Research Conference 2013, Belfast Dr Anne Arber & Dr Anki Odelius University of Surrey, Guildford UK

2 Background Multiple Myeloma is an uncommon haematological cancer of the bone marrow with 4,000 cases each year in the UK The disease can be controlled and the gold standard treatment is a combination of oral chemotherapy drugs. The average live span with treatment is 5-10 years Oral chemotherapy (OC) is part of a new paradigm in cancer therapy and is self-managed by the patient at home

3 Research question What strategies do health care professionals use when giving information about OC?

4 Methods and Sampling for audio recordings 10 consultations were audio recorded where information is shared with patients about their treatment All patients were accompanied by a spouse or another family member The consultation was conducted by a haematology consultant followed by another consultation with a specialist nurse (CNS)

5 Data analysis The data analysis was conducted in accordance with a general inductive approach which generates concepts in response to specific research questions (Thomas 2006). This approach has much in common with grounded theory Data were transcribed verbatim and entered into NVivo 8.

6 Findings Features of the consultations Information strategies

7 Features of the consultations Beginning chat/introductions Consultants discussed diagnosis, treatment and side effects of the OC drugs Following this the Clinical Nurse Specialist (CNS) discussed the practical aspects of taking medication called pre-chemo as well as discussing what side effects may occur and what actions to take should they occur.

8 Information Strategies Carry on as normal balancing urgency and gravity with minimising and emphasising the controllability of the illness Information giving process and use of scenarios to warn about serious side effects and the responsibilities of the patient Formalities of consent Repetition of information reinforces the gravity of the situation Scare tactics reinforces the potential urgency of the situation

9 Carry on as normal CNS: If you were unwell just make sure you ve got your yellow card and you could go to the nearest hospital and they would liaise with us. I m doubting that will happen, I m just saying do try to carry on as normal a life as you can because it s good for you psychologically as well. Pt: I can see that and I would have thought if say next year I was sufficiently healthy in remission to be able to contemplate a foreign holiday then getting insurance is going to be the biggest issue. CNS: I can give you information about that as well.

10 Information giving process CNS: And I ll go into that in a bit more as we get through the sort of information giving process, so I ll go through what kind of scenarios you need to ring us about. and how to ring us

11 Repetition CNS: Okay and then the Thalidomide we talked about as causing... Pt: Which we ve been through, yep. CNS: Yes. But there is a separate Thalidomide consent form that we just need to uh go into so I do have to quite counsel you a little bit more in depth.

12 Warnings about risks Dr: Pt: Dr: Yeah, I don t think you ll find violent reaction but yes. And if you do, then we need to know. The other thing about Thalidomide is that, this drug can cause birth defects and things, you must make sure you keep it out of the way of anybody, if people start taking other people s drugs that you wouldn't believe. [keeping]...high up. Someone comes and visits and things and saying that taking them must be good for you and take them and find out that they re pregnant or something. Wife: Oh no. Dr: So just make sure, you have to be careful they re, kept under lock and key, well not lock and key but there s

13 Scare tactics The reason being that if you ring us, even if it s 3 o clock in the morning, on a Sunday morning, we can get onto whatever it is quickly, we can keep, perhaps give you oral antibiotics and keep you at home. If you delay, thinking you don t want to bother us, you re not sure whether it s anything or not and you delay, you can become really unwell. Um in fact we have lost people occasionally by their delaying and so you ring at any time of day or night. Now myself and X are here Monday to Friday, 9 to 5, we carry a bleep, our bleep numbers are on this yellow alert card and also... (Clinical Nurse Specialist)

14 Consent to treatment Dr: Pt: Dr: Pt: Dr: Pt: Wife: Dr: Pt: Dr: That you understand, as I say, the CNS will talk to you and hopefully tell you all those things and that you re happy to go forward with the treatment, okay. Yeah, well I haven t really got a choice have I, there s no point. You do have a choice, everybody has a, everybody says... [I]...have a choice but. ( ) But its up to you at the end of the day. Saying there s no choice, I mean for me I mean, you ve got to give it a go. It ll only get worse won t it. He s having his MRI scan on Saturday... Okay, well the MRI will help us down the line, but the evidence we ve got here is that this is Myeloma. So you think it could be something else then? No, I don t. It will tell us how extensive it is.

15 Implications Quantity of information: saturation Issue of repetition and consent Scare tactics Effects of OC on patients/carers lives and wellbeing Adherence with OC?

16 Acknowledgements Sincere thanks to: All the patients, partners and health care professionals who participated in the research Myeloma UK for funding the study

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