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 F – Text from staff interview discussion guide

Introduction

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

• Thanks, introduce self and Ipsos
• Remind participant of evaluation aims: The Scottish Government has asked us, Ipsos Scotland (an independent research and evaluation organisation), to find out what helps or hinders people from accessing cancer treatment and support, and how experiences of cancer treatment and support services could be improved. We’re focusing particularly on people living in rural and islands areas, and deprived areas.
• Explain 6 case study approach and fact interviewing patients and professionals in each
• Explain what we will do with their answers: reporting, anonymity, confidentiality, use of quotes: Once we have spoken to everyone, we’ll write a report on the findings that will be published by the Scottish Government. The findings will be used to inform the next Cancer Action Plan.
• Discuss anonymity and confidentiality: No identifying information about individuals (e.g. names or contact details) will be passed on to anyone outside the evaluation team (me and my colleagues at Ipsos).
• With your permission, we may include some quotes in the report. These will be anonymous (no names will be included, and we won’t link roles and case study areas). However, the case study areas will be named in the introduction to the report. While we will endeavour to protect confidentiality wherever possible, given the small number of people in specific roles, it can be difficult to offer concrete guarantees of confidentiality to professional interviewees. If there is anything you mention during the interview that you would rather wasn’t quoted or referred to directly, then just let me know. I’ll check back with you about this at the end.
• Timing (60 mins), permission to interrupt/move on if needed
• No right or wrong answers. They don’t have to answer any questions they don’t want to answer and can decide to stop the interview at any point. Ask them to tell us how they will let us know they want to pause/stop.
• Emphasise voluntary participation and right to change mind / withdraw consent (until findings written up)
• Any questions?

Audio record consent to take part and to be recorded: 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.

Background section

Aim: Establish rapport and gather key background information on participant

To begin, could you briefly explain your role in relation to cancer treatment or support services in [case study area]?

Whereabout are you (mainly) based?

At what stages of someone’s cancer journey do you normally come into contact with patients?

General views on barriers and facilitators to accessing cancer treatment and support

Aim: General, open questions to understand what they see as the main barriers and facilitators to accessing cancer treatment and support for people in rural and/or deprived areas.

What, if anything, do you think makes it difficult for [people living in rural/island or deprived areas] to access cancer treatment and support in your area?

Any particular stages of the treatment journey where you think the issues faced by [people living in rural/island or deprived areas] are more significant?

Any particular subgroups of people in [rural/island or deprived areas] for whom these issues are more significant?

Is there anything specific about how treatment or support is provided or organised in your area that make it more difficult for [people in rural/island or deprived areas] to access?

What about prehabilitation? Are there any particular issues or barriers to taking up prehabilitation for people diagnosed with cancer [living in rural/island or deprived areas]?

And similarly, what about rehab services? Any issues / barriers to providing / taking this up for people in rural/island or deprived areas?

What, if anything, do you think supports [people living in rural/island or deprived areas] of your area to access cancer treatment and support services?

If not covered/mentioned – what about not just access to treatment, but people’s experience of it? Is there anything else that you haven’t mentioned that you think makes the experience of treatment more or less difficult for [rural/island or deprived areas]?

Are there any specific initiatives in your area aimed at tackling inequalities in treatment and support for those in [rural/island or deprived areas]? How effective are these? Probe fully.

If not mentioned, probe on role of ICJ and SPoC – but also ask what other services or initiatives are in place that might help support people in [rural/island or deprived areas].

What, if any, (other/wider) support are patients in your area offered after they have been diagnosed? E.g. financial, practical, or other support?

How well used is this wider support by [people living in rural/island or deprived areas]? What would increase take-up among this group?

How far are cancer services and support in your area able to help overcome any difficulties [people in rural/island or deprived areas] experience around treatment or support? What are the remaining barriers?

How could services and support be improved/strengthened to improve access and engagement among [people in rural/island or deprived areas]?

Who would need to be involved in improving services and support? E.g. which parts of the NHS? Which other services? Local/national level change?

COM-B – Capability

Aim to ensure we cover key elements from Capability dimension of COM-B, with a particular focus on psychological capability (since physical capability overlaps with Opportunity). Also includes a couple of questions relating to ‘Realistic medicine’.

What do you think works well in terms of helping patients [living in rural/island or deprived areas] understand their treatment options?

Does the approach you take to discussing treatment options differ at all when you’re speaking to people [living in rural/island or deprived areas]?

Are all patients in your area given a Cancer treatment summary document? If no, what are the barriers to this? If yes, – how useful do you think patients [living in rural/island or deprived areas] find this document? How could it be made more useful?

What, if any, additional barriers do they experience in terms of understanding their options?

In your experience, what has helped patients [living in rural/island or deprived areas] feel they have a say in decisions about their treatment?

And what prevents them from feeling they have a say? How could this be improved/strengthened?

What about understanding of their support options? How are people made aware of support available? How could awareness be improved?

Who is responsible for alerting people to the wider support available to them? How effective is this?

COM-B – Opportunity

Aim: Particular focus on physical/environmental barriers, and social influences.

When you are discussing treatment and support with patients [living in rural/island or deprived areas], are there any practical issues that are bigger or more significant for them than others?

Are there social influences (e.g., family support, community networks) that you think affect people’s engagement with treatment differently in [deprived or rural/island areas]?

What, if anything, is in place to help overcome any specific barriers you’ve mentioned? How effective is this? How could it be improved?

Travel / distance: Ease of getting to treatment centre; Cost of getting there; cost of overnight stays

Finance/money: any other costs / financial issues patients [living in rural/island or deprived areas] particularly struggle with?

Time: away from home; off work; caring responsibilities (children, other family members, pets); time/frequency of treatment

Any other health conditions or disabilities they may have, that may impact on their treatment or how easy it is to access (e.g. mobility issues).

Support available from family/friends?

Support available from services?

Experiences / views of other people (Who? Whose views do they trust most and why?)

COM-B – Motivation

Aim: Particular focus on emotions, identity, beliefs and goals

When you are discussing treatment and support with patients [living in rural/island or deprived areas], is there anything about their general beliefs or attitudes around cancer or treatment that differ from what you tend to see with patients from other areas? How does this impact on their decisions about treatment? What, if anything, could help address this?

What about their:

Beliefs about the likely success of treatment?

Understanding of side effects of treatment / how well think could tolerate it?

Views of themselves / general attitudes to help seeking / asking for support?

Are there any particular points in the treatment journey where you have noticed people from [rural/island or deprived areas] being more likely to disengage? Why do you think this is?

What, if anything, is in place to support patients emotionally and psychologically through their treatment journey? Are [people in rural/island or deprived areas] equally able or likely to access this emotional support? If no – what are the barriers and how could their access to emotional/psychological support be improved?

Probe on formal vs. informal emotional/psychological support – e.g. counselling vs. more informal support from professionals.

Digital access and skills

Are patients in [rural/island or deprived areas] in your area offered remote appointments during treatment? What about remote appointments for wider support?

How effective are remote appointments in overcoming some of the barriers you’ve described for patients [living in rural/island or deprived areas]?

How could remote appointments be improved for patients [living in rural/island or deprived areas]?

At what treatment stages / what types of appointment are offered remotely?

How? Video calls, telephone calls? Who with?

Are patients in [rural/island or deprived areas] able to join all of these remote appointments successfully? If not – probe on what the issues / barriers are.

Do you find that patients in [rural/island or deprived areas] feel able and comfortable to do appointments this way? Why / why not?

Is there any help/support with joining appointments online? What? Is this helpful or not? In what way?

What, if anything, would you suggest to make online appointments work better for people?

What about for telephone appointments?

Summing up and suggestions for improvement

Is there anything else you’d like to say about what’s working well or less well in supporting the cancer treatment journey in your area for people in [rural/island or deprived areas] that we haven’t covered?

Do you have any other suggestions for improving access to treatment or support for those in [rural/island or deprived areas] going through cancer treatment?

Any changes to how NHS services are organised that would help address barriers?

Changes to wider services or support?

Additional resources? What?

Change to national policies or services?

Thank and close

Ask for permission to get in touch again if any follow-up questions / points of clarification

Check whether they would be happy to be anonymously quoted (record in recruitment spreadsheet)

Thank for their time.