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 D – Text from patient follow-up interview discussion guide

Introduction

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

• Thank participant for taking part and (re)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.
• Purpose of follow-up interviews: thank you for speaking to us a few months ago. The reason we wanted to speak to you again is to understand your experiences of any treatment or support you may have been offered or taken up since then.
• 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 no more than 45 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.

Note researcher will need to be familiar with previous interview answers.

Section 1: Background

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

Firstly, I’d like to ask you if anything has changed about where you’re living since we last spoke?

If yes:

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?

And has anything changed with how you tend to get around your area?

And when we spoke last you were living with [household] has that changed?

If yes:

Who do you live with?

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

And when we spoke before you were [working/not working]. Has this changed?

If yes:

And why did that change?

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

Section 2: Overview of their journey since previous interview

Aim: to understand their cancer journey since the previous interview. 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 about what has happened in your cancer journey since we last spoke. 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.”

Previously we talked about what happened since you received your diagnosis of [cancer type] in [month/year]. Can you tell me about what has happened since [interview date]?

If needed: probe on anything participant expected to happen since previous interview e.g. new treatments, procedures, appointments, change of medication.

Key factual things to establish, if applicable:

• 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.

Thinking about the last few months, have any challenges or difficulties come up in relation to accessing treatment or support that you have received?

If yes:

• 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?

If barrier(s) may still be relevant based on stage of treatment/what they have said so far: Last time, you mentioned challenges with [refer to a specific barrier from the first interview]. Has that become any easier or more difficult to manage?

What was it about this that has been easier/more difficult?

Repeat for all barriers previously mentioned.

What about things that have helped in relation to accessing treatment and support. Has any new support become available or more important to you recently?

• Who provided this?
• What was it about this that helped?

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

• Who provided this?
• What was it about this that helped?

Section 4: Initial support and information

Aim: to explore if there is a gap between support offered at the start of someone’s cancer journey and what patients remember or wish they had engaged with later.

Interviewer note this section will need to be used flexibly depending on what was covered in the first interview.

If mentioned offer of support if first interview: One of the things we’re interested in is the support that people are offered when they’re first diagnosed. When we spoke before you mentioned [types of support available – e.g. practical help, financial advice, or emotional support services].

If not already covered in first interview: At that early stage, what were your thoughts about taking up that kind of support?

Why did you decide to [take it up/not take it up]?

If needed, probe for:

• If they felt they could manage with the support they already had from family or friends?
• If they didn’t think they needed it.
• If there was something off-putting about the service, type of support, or how to access it.

Some people feel a bit overwhelmed with all the information they get initially. Is that something you experienced?

What could help?

Is there any support you wish you had taken up or been offered earlier?

If yes: what changed your mind or made you realise you needed that support?

What do you think might have helped you to take up that offer of support back then

Probes: Was it the timing of the offer? The way the information was given? Would it have helped to have someone follow up with you a few weeks later?

Is there any support that would have been helpful for you if offered later in your journey?

If yes: what made you realise you needed that support?

Section 5: Specific probes

Aim: to cover elements that that it wasn’t possible to cover in previous interview and/or issues that may have arisen since the first interview.

If time: Thank you, I’d now like to ask you about some things other people have mentioned as either helping or making things more difficult for them.

Researcher – tailor according to what issues were experienced last time. Check if any new issues/probe on anything there wasn’t time to cover last time.

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?)
• 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.)?

• 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?

Finances

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

Side effects and health conditions

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 offered anything to help with any of this? 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?
• What would you like to see changed, to address the issues you’ve described for people in similar circumstances to you?

Section 6: Reflection on journey

Aim: to capture reflections and advice based on their complete journey to date.

If you could go back and give yourself one piece of advice at the very start of your journey, what would it be?

Based on your experience, what is the single most important thing services could do to improve the journey for others?

How could the NHS or other organisations change how and when they offer support to make it more likely that people will remember it and use it when they need it most?

Section 7: Final thoughts

Aim: opportunity for any other reflections

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

Thank and close

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).

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.