Scotland's Cancer Strategy Evaluation: Experiences of patient access and engagement with cancer treatment and support in rural and island areas, and in areas with higher deprivation

Appendix A – Text from patient interview discussion guide

Introduction

Aim: to ensure the participant understands what is involved and to gain informed consent

• Thank participant for taking part and introduce yourself and Ipsos Scotland.
• Remind participant/s of the aims of the evaluation: The Scottish Government has asked us, Ipsos Scotland (an independent research and evaluation organisation) to speak to people about their experiences of cancer treatment and support. The Scottish Government wants to understand what is working well and what could be improved, particularly for people living in rural/island areas of Scotland and those living in areas where a lot of people are on low incomes. This will help them think about how to deliver services in future.
• We are speaking to people in six areas across Scotland. In each, we’re speaking to people who’ve had a diagnosis of cancer since April 2023, and professionals involved in cancer treatment and support services. Once we have spoken to everyone, we’ll write a report on the findings and that will be published by the Scottish Government. The findings will be used to inform the next Scottish Cancer Action Plan.
• Discuss anonymity and confidentiality: No identifying information about you (e.g. names or contact details) will be passed on to anyone outside the evaluation team (me and my colleagues at Ipsos). The only exception to this would be if we believe that you, or somebody else, is at risk of serious harm, in which case we may need to share this with someone else so that help can be provided.
• With your permission, we may include some quotes and anonymised case studies in the report. These will be anonymous (no names will be included). It will not be possible for the Scottish Government or anyone else to know who took part in the research. If you do not want us to quote what you say, you can just let us know during or after your interview (up to when the report has been submitted).
• Remind participant that the interview will last around 60 minutes but that they can take a break at any time or split the interview into two parts if it starts feeling too long. Note that we will give them the opportunity to talk about the things that are most important to them but we may have to move them on at points, this is to make sure we cover everything.
• Check participant is comfortable and has everything they need – e.g. a drink, a comfortable seat.
• Remind participant that there are no right or wrong answers and we just want to hear about their views and experiences. If there is anything they can’t remember that’s completely fine. Reassure we won’t be asking any questions about their prognosis so there is no need to discuss that.
• Emphasise that taking part is completely voluntary - they don’t have to answer any questions they don’t want to answer and can decide to stop the interview at any point. If there is a question they don’t want to answer, suggest they say ‘I’d rather skip that.’. Remind that they are free to change their mind and decide not to take part at any time before or during the interview, or after the interview until the findings have been written up.
• Check if participant has any questions.
• Request permission to record interview (and record this): This is to make sure we capture everything you say and don't have to rely on our memories or scrappy notes when we come to writing the report. Recordings and any transcripts will not be shared outside the evaluation team at Ipsos

Section 1: Background

Aim: Warm-up and gather key background information on participant.

Could you tell me a bit about where you live?

How long have you lived there?

What it’s like as a place to live?

If rural: How far is it to the nearest town/city?

How do you tend to get around your area?

Who do you live with?

And is there anyone else that you spend a lot of time with?

You mentioned that before your diagnosis you were [working/not working]. Has this changed at all since you received your diagnosis?'

When we first spoke, you said you [had/did not have a pre-existing health condition] before you got your cancer diagnosis. How would you have described your overall health at that point?

Is there anything else you think it might be useful or important for me to know about your circumstances before we get into the discussion?

Section 2: Overview of their journey from diagnosis to now

Aim: to understand their cancer journey, from starting to access treatment and support to now. The idea here is to start with an open question to get a broad overview and timeline of their treatment journey. However, as they mention things that may be key decision points/barriers/facilitators, either probe further or make notes and come back to them later. Depending on how talkative they are, you may well need to follow up on details as they talk, rather than listening to their whole story and then asking follow-ups.

“Thank you for sharing that. For the next part of the discussion, I’d like to hear more about your story from the point at which you received your diagnosis until now, or up to the end of your treatment. For the rest of the interview, I’m interested in hearing about your experiences of all the treatment types you have received as well as any other support you have been offered or received alongside the medical treatment. If I use the terms, ‘treatment and support’, or ‘treatment or support’ this is what I’m referring to. I might interrupt to ask you to clarify things or to give me a bit more detail – that’s not me being rude, I’m just trying to make sure I’ve understood what you’re telling me. As I said at the beginning, if there are things you can’t remember, that’s completely fine. And, don’t worry if there are details you don’t know, like dates, names of medications or names of staff.”

You said during the first call that you had been diagnosed with [cancer type]. Can you remember what happened next after you had received your diagnosis?

Key factual things to establish initially (to get a clearer picture of their journey):

• What treatment and support they were offered (and when)
• What (if any) treatment and support they took up (and when)
• Who were the key people involved in their treatment and support at different stages.
• Who did any offers of support come from
• Where they received treatment and support / had appointments (including whether any were online or by phone, and how far from where they live treatment / appointments during treatment were),
• What stage they are at now with treatment and support

Section 3: General questions on what helps or hinders access to treatment and support

Aim: general, open questions to understand what they see as the main barriers and facilitators to accessing and having a good experience of treatment and support. You will need to explore specific potential barriers in more detail, but the idea here is to start with a more open question to see what they themselves view as the main barriers and facilitators.

Looking back on your treatment journey, what, if anything, made it difficult to take up treatment [and support] you were offered?

What was it about this that was difficult?

Were there any particular stages or elements of your treatment [and support] journey where this was more difficult?

Was it possible to overcome those difficulties/challenges or did they mean you weren’t able to take up the treatment/support you would have liked to?

What / who helped/could have helped?

And again, looking back on your treatment journey, what, if anything, did you find helped with getting the treatment [and support] you needed?

Any support around treatment? Who provided this?

What was it about this that helped?

What [else] would have helped make it easier for you to get treatment [and support]?

What could the NHS or other services change about how they deliver things to make it easier for people in similar circumstances to you to access treatment [and support]?

What, if anything, helped you to cope or to have as good an experience as it’s possible to have of your treatment [and support]?

Any support around treatment? Who provided this?

What was it about this that helped?

And again, was there anything that made the actual experience of treatment [and support] more difficult?

What was it about this that was difficult?

Were there any particular stages or elements of your treatment [and support] journey where this was more difficult?

Was it possible to overcome those difficulties/challenges or did they mean you weren’t able to take up the treatment/support?

What / who helped/could have helped?

What do you think would have helped make the experience of treatment and support better for you?

What could the NHS or other services change about how they deliver things to make it easier for people in similar circumstances to you to access treatment [and support]?

Section 4: Specific probes

Aim: Some of this may already have been covered, but try and ensure you have covered each of the elements below:

You’ve already mentioned quite a few things you feel either helped or made things more difficult during your treatment and support journey, but I just wanted to go over a few other things other people have mentioned

Information provided about treatment and support

What information were you given about your treatment [and support] options?

Did you have a follow up appointment to discuss treatment [and support] options?

How were you given this info? Verbally?

Were you given enough information? If no: What more did you want to know? Would have liked more but it wasn’t available.

How easy or difficult was this information to understand?

If difficult: In what ways was it difficult?

If easy: what helped make this info easy to understand?

Were you given a Cancer treatment summary document?

If needed: Your Treatment Summary is a document including details of the treatments/surgery you have had, possible outcomes/consequences of the treatments and signs and symptoms that may indicate the possibility of recurrence.

If yes – how useful did you find this?

What would have improved the information you received about your treatment [and support] options?

How did you receive details of appointments for treatment [and support]?

Were you happy with this? Would any other way have been better?

Have you ever missed any appointments because you didn’t receive the details of it?

What could have prevented this from happening?

And what happens if you need to change an appointment?

How easy or difficult is this?

What could help?

Discussions about treatment with medical professionals provided

What kinds of things did medical professionals discuss with you about your treatment [and support] when you were first diagnosed?

Who did you have these discussions with (mostly)?

Were you able to ask questions about your treatment [and support] options?

Did you feel you had a say in decisions about what treatment [and support] you would have?

What made you feel you did / didn’t have a say?

Discussions about treatment with other people

Who else did you discuss your treatment [and support] options with?

What did you discuss with them?

Whose view do you feel was most important to you when you were making those decisions?

What about family and friends?

And did any support that you knew you could get from family or friends in your community during your treatment have any impact on your decisions?

Travel

If not already established: Where were you referred for treatment or support? (e.g. for those in remote and island communities, was it a local centre or specialist centre further away?)

Were you offered any practical, financial or other help with travel?

How easy / difficult was it to get to your appointments?

Did travel challenges affect your decisions about treatment [and support]? (If yes, what was it about the journey that affected decision?)

Were you able to get to all the in-person appointments you were meant to attend during your treatment [and support]?

If not – what was the impact of this for you?

What would you like to see changed, to address the issues you’ve described for people in similar circumstances to you?

Managing treatment and support around other commitments

How easy / difficult was it for you to manage your treatment [and support] around your other commitments (like work, family life, etc.)?

What particular challenges did you experience? At what points? What impacts did these issues have for you?

Were you offered any practical, financial or other help with any of this? What? Was this helpful or not? In what way?

Did these challenges affect your decisions about treatment and support? In what way? At what points?

What would you like to see changed, to address the issues you’ve described for people in similar circumstances to you?

What, if any, was the financial impact of attending treatment [and support]?

And did any side effects [or other health conditions] have any impact on your ability to manage treatment?

At what points? What impacts did these issues have for you?

Were you help with any of this? What? Was this helpful or not? In what way?

If have existing health conditions

And, what impact, has there been on your existing health condition/s while you have been going through treatment [and support]?

Did side effects or impact on other conditions affect your decisions about treatment [and support]? In what way? At what points?

Were you help with any of this? What? Was this helpful or not? In what way?

What would you like to see changed, to address the issues you’ve described for people in similar circumstances to you?

Phone or video appointments

Were you offered video or telephone appointments at any point during your treatment [and support]?

At what stages / for what types of appointment?

How? Video calls, telephone calls? Who with?

Were you able to join all of these appointments successfully?

Did you feel able and comfortable to do appointments this way?

Were you offered any help/support around video or telephone appointments? E.g. guidance, equipment? Who offered this? Did you take it up? Was this helpful or not? In what way?

What, if anything, would you suggest to make video appointments work better for people in similar circumstances to you?

Emotional support

What were your main concerns or worries about treatment, when you were first diagnosed?

Were you offered any emotional support from professionals while you were going through treatment?

If offered support:

If yes: Who offered this? At what stage?

Did you take it up? If not, why not?

What type of support did they provide?

What difference did this make to you?

If not offered support:

Would that have been helpful?

When would the best time have been for it to have been offered?

Do you think you would have taken it up? If not, why not?

How do you generally feel about asking for or taking up help?

Other support offered

Aim: Specific questions in case this has not been fully covered already

What, if any, other support have you been offered since you were diagnosed?

Who offered this support?

Have you found this support helpful or not?

If not mentioned: Have you heard of the Macmillan’s Improving the Cancer Journey or Single Point of Contact services? If needed: single point of contact means you have one main port of call to contact about any aspects of your treatment. Were you offered these?

What, if any, of the support you have been offered have you taken up? Why have you / haven’t you taken this up? Probe on any barriers to taking up support.

What other help would you have found helpful during your treatment journey (after receiving your diagnosis)?

Summing up and suggestions for improvement

Is there anything else you’d like to say about your treatment journey that we haven’t covered?

Do you have any other suggestions for improving access to treatment or support for those going through cancer treatment?

End

Thank you very much for your time. We know we’ve covered some emotional topics. If you feel you need any extra support after this interview, there are some helplines you might find useful in the information sheet I emailed/gave you (make sure they have a copy of this).

We may want to come back to some of the people we speak to in the next few months, around October this year, to see if they would be willing to speak to us again and let us know how their treatment journey has gone since. We are very conscious that people’s circumstances may change, and that not everyone will feel they want to speak about this again. It would be completely up to you to decide when we got back in touch whether you wanted to speak to us again.

Would you be open to us contacting you again around October this year, to see whether you would be interested? Again, there is absolutely no obligation – we completely understand that not everyone will want to do this.

Record consent to recontact. Ask for email, phone number and postal address if possible.

Thank you again for speaking to me and sharing your journey. As you know, we are giving everyone a £35 thank you voucher for taking part. Would you prefer an Amazon voucher or a Love2shop voucher?

Give/organise sending voucher and record in recruitment sheet.