Background
Study design
Patient and public involvement
Methods
Healthcare professionals
Objectives
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To describe the models of providing information and support currently provided in the UK when active treatment ends using semi-structured interviews.
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To quantify the frequency of models of information and support using an online survey.
Sample and setting
Data collection
Analysis
Young people
Objective
Sample and setting
Data collection
Analysis
Results
Healthcare professionals
Characteristic | n (%) |
---|---|
Total | 49 (100) |
Role | |
Nurse | 30 (61) |
Youth support coordinator | 9 (18) |
Medical doctor | 4 (8) |
Other | 6 (12) |
Place of work | |
AYA specialist hospital | 26 (53) |
Across both an AYA specialist hospital and Non AYA specialist but provider of AYA care | 14 (29) |
Non AYA specialist but provider of AYA care | 5 (10) |
Other | 4 (8) |
Time working with young people with cancer | |
< 1 year | 4 (8) |
1–3 years | 6 (12) |
> 3 years | 39 (80) |
Issues experienced by young people at the end of treatment
In terms of provision of information and support that met these issues, healthcare professionals perceived young people to have a variety of unmet needs. They felt that fatigue management, fear of recurrence, late effects, fertility and employment were some of the key issues where young people’s information and support needs were unmet (Fig. 1).“Last week I had a patient who’s probably two months post-transplant, and just rang me up and asked me for advice on how to get back into work because apparently, her work were being quite tricky about doing a phased return to work, and she asked for advice.”
“Then, also, a lot of partners sometimes ring me up and just-, things like asking advice on things like sex and relationships post-chemo, and again, it’s about signposting them to the right things.”
How end of treatment issues were identified
Alternatively, needs were highlighted to healthcare professionals by young people themselves initiating a conversation about the issues they were experiencing; again, this was either formally or informally. In some cases, young people contacted healthcare professionals formally, making an appointment with a specific healthcare professional to discuss their issues, i.e. psychologist. In other cases, young people initiated an informal conversation through social media or text message:“The consultant had emailed me and said, ‘Just seen so-and-so, just to let you know these are their concerns. Have you got any ideas of how we can support?’ So, they might see them in clinic in a more formal setting, but over emails we’ll be linking up together.”
The survey asked healthcare professional’s assessment and identification of young people’s needs at the end of treatment. A formal or standardised tool for assessing the needs of young people at the end of their cancer treatment was used by 29 (59%) survey respondents, these most commonly included: the AYA ‘IAM’ (Integrated Assessment Mapping; n = 10; 20%); localised holistic needs assessment (HNA) (n = 8; 16%); Macmillan (UK cancer charity) e-HNA (n = 3; 6%); and other specified assessment tool (n = 8; 16%).“It’s usually through text or through the Facebook group. That’s for young people who don’t come to the unit.”
Facilitators to provision of support and information
The majority (n = 47; 96%) of healthcare professionals reported in the survey that young people were provided with contact details of a professional as an ongoing source of information and support after treatment ended. Similarly, 46 (94%) stated that their service offered one-to-one emotional, psychosocial and practical support for young people. Healthcare professionals ranked the specific healthcare professional roles which were the main point of contact, and the roles that were the primary sources of emotional and psychosocial support. The top three of each are listed in Table 2.“Yes, they can ring us, they have our number, they are always welcome to ring us. We don’t ever really stop being a CNS, we have quite a good service and we carry a mobile and they can contact us.”
Following the end of treatment...a | |
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The main point of contact for young people: | The main source of 1:1 emotional, psychosocial, and practical support: |
1. AYA Clinical Nurse Specialist (n = 36; 74%) | 1. AYA Clinical Nurse Specialist (n = 38; 78%) |
2. Youth Support Co-ordinator (n = 22; 45%) | 2. CLIC Sargent Social worker/Community worker (n = 27; 55%) |
3. CLIC Sargent Social worker/Community worker (n = 19; 39%) | |
3. Youth Support Co-ordinator (n = 25; 51%) |
Challenges to provision of support and information
Process challenges included difficulties in knowing where young people had been discharged to, for example, if the young person had returned to university they might have then been in a new city and new hospital. Some participants noted that young people did not need support and they were hard to engage:“As a hospital no one person is, kind of, leading on it and there isn’t a set structure ( … ) everyone’s doing their own, sort of, separate thing in site-specific teams, it’s a bit loose.”
The limitations of services, in terms of resource and time, were highlighted as another challenge to the provision of support at the end of treatment.“The psychology team do a beading day [type of narrative therapy], and I think that can be quite useful at the end of treatment, looking back over things. Again, you can offer it to them all, but not many of them take it up.”
Existing sources of support and information
Most healthcare professionals (n = 32; 65%) thought the service they worked in had the structures and processes in place to prepare young people for the end of treatment. However, 11 (23%) healthcare professionals felt there were inadequate structures and processes in place to prepare young people for the end of treatment in their service.“Actually, I think the young people can find it quite reassuring to hear from other previous patients that, actually, it’s sh*t scary when you finish treatment because, the whole time during treatment, you’ve had these people looking out for you.”
Timing of information and support provision
The survey results showed that most healthcare professionals (n = 36;74%) felt that the timing when information and support regarding end of treatment was provided was dependent on a young person’s circumstance. They felt the provision of both information and support should be given to young people at the following time points: 2–3 months before the end of treatment (information: n = 23; 47%; support: n = 18; 37%), directly at the end of treatment (information and support: n = 17; 35%), within the first month following treatment (information: n = 22; 45%, support: n = 19; 39%), or at 1 month after treatment ends (information: n = 11; 22%, support: n = 12; 25%).“I think I tend to see more engagement with them maybe three to six months after treatment ends. That’s the time when they try to get back into normal life as much as they can but they, kind of, find that their friends have moved on or that things are different in work. They’re not quite as able to do the things they used to, so they, kind of, come back to us maybe three to six months on.”
Additional influencing factors: age, cancer type, personal situation
As the healthcare professional interview data indicated that information and support needs were influenced by a young person’s cancer type, the survey explored whether needs were sufficiently met or unmet across a different cancer type. Both in terms of information and support needs, healthcare professionals identified certain cancer types to have more information and support available than others. Lymphoma, bone tumours and leukaemia were the cancer types with the most sufficient information and support available, and urinary, oral and lung cancer were considered the ones with less sufficient information and support available. It is essential to highlight that healthcare professionals also indicated that they did not know whether there was sufficient support available for many of the cancer types young people presented with.“It’s something we’ve probably got to look at. At the moment, they float in their own tumour groups … So, testicular cancer patients, 99% of them will be referred out, so, at their end-of-treatment, they will be at the [DH], so I don’t really get involved with them … Skin is a tricky one because a lot of skin, like melanoma, they don’t have an end-of-treatment because our link in with the treatment would be the nurse specialist for skin, but a lot of the time, they have it incised and that’s it.”
Changes and improvements
The importance of specific roles was discussed, such as the need for someone to lead and drive the development of end of treatment services. It was suggested that implementing more nurse specialist roles to support young people at this phase could be beneficial, in addition to an increased awareness of the significance of the end of treatment phase within young people’s cancer timeline, and their needs that surround this phase.“Young people supporting each other, I think, during the treatment, that’s one thing that certainly people benefit massively from, or they seem to anyway, is the connections they make with other young people. I guess, a lot of people continue that naturally, but how to maybe build that into finishing treatment, where they can still, there is still a way to maintain those connections through the hospital.”
Suggested processes which could be formalised were the co-ordination of care, such as ensuring that follow-up clinic visits were not only medical in nature but were also combined with opportunities for young people to receive emotional or psychosocial support and information. Additionally, the need to standardise the holistic needs assessment process and the follow up of young people, to ensure consistency and equality in processes:“It’s that you have to have that balance between holding their hands for a bit longer, but eventually, they will let go and they’ll stay away, or you let them go straight away and then they’ll yo-yo back.”
“End of treatment is a huge part of that as well, so making sure that, whether we’ve been involved or not through treatment, that there is a contact at end of treatment and how that looks and what we offer.”
Young people
How issues were identified
There were young people who described feeling like they had all the information that they needed, but that was because they actively sought the support. While it was their responsibility to initiate a conversation if they felt they had any issues after treatment ended, some were regularly reminded of the help that was on offer to them should they need it:“Normally, I have to ask for it, like you kind of have to tell them that you’re feeling like this, a bit. I feel like maybe a catch-up every now and again, maybe like a meeting. Well, I have clinic, but I feel like clinic’s very much doctor-orientated, whereas I think it would be more beneficial to be more, like, nurse-orientated.”
Existing sources of support
Charity events and trips were recognised as providing young people with a way of rebuilding their confidence, providing a safe space for them to be themselves, without feeling ‘labelled’ as someone who had cancer.“I think the social nights just helped me put things into perspective because I realised how, not easy, but yes, easy my treatment was compared to other people’s. I have a guy who was on the same treatment as me, and so we were in at the same time, so we were in always on the same days and stuff like that. Me and him still chat, which is nice. I think it’s just nice to see what people are getting up to since treatment.”
Challenges
Another challenge that was highlighted was a lack of clarity on who young people should contact if they had questions or issues. Some were given a specific number to call and did not find this a challenge, but others reported having contact with a variety of professionals and that they were therefore unclear on who they should or could contact. This was especially the case for help with practical, life-related issues such as employment and finances.“I’m normal again, I’m not poorly anymore, so their attention should be on the poorly people but you kind of still want to be poorly, as awful as that sounds. Like, it’s nice to be in that little group of their number ones, that type of thing, whereas now I’m just a normal person who they used to know so all their attention’s on the poorly people, which it should be, and that’s an awful and selfish thing to say really but you kind of want to part of it again.”
“It wasn’t until I was sent a letter by my GP, that then I thought, ‘Actually, I think I need some help, in terms of speaking to a therapist.’ So, then I made an appointment with another doctor, he was like, ‘Well, we don’t offer it at the practice, but here are a list of numbers that you can call’ … when you’re given so much information, you tend to just put things off, and not take the initiative to sort it out, but I think you’re so preoccupied with other things that you then just don’t make the effort to do it.”
Influencing factors
There were young people who recognised that asking for help did not come naturally to them and that it was not in their personality to discuss their feelings or seek support to deal with their emotions. This therefore influenced the way they accessed support after they finished treatment and their awareness of what was available to them:“Then, for me, my treatment only lasted three months, so that’d be at the beginning, so-, just so you have time to get your head around it… I don’t feel like I’ve had it.”
Developing recommendations
1) Earlier provision and preparation around ongoing impact of cancer and cancer treatment | |
2) Standardised and continued follow-up of young people’s emotional well-being | |
3) Development of more information and resources specific to young people | |
4) Increasing the availability and awareness of peer-to-peer support for all young people after treatment ends | |
5) Increasing awareness of support available to young people at the end of treatment | |
6) Clearer structures, roles and processes in place to assist young people to access support after treatment ends (e.g. definition of who is responsible for giving information and support at the end of treatment and how this is shared with the young person) | |
7) Improved communication and care co-ordination between all professionals involved in a young person’s care after treatment ends |
Study recommendations
It was recognised in the workshop that peer-to-peer support was an essential part of assisting young people to transition from the end of treatment and to assist them to adapt to ‘normal’ life as a young person.“She’s gone from being my cancer friend to my friend, and I think that’s part of the peer support for after treatment, is showing people that it’s not just necessarily dumping all your cancer friends and then getting ‘life after’ friends. You can bring those people with you and they go from being your cancer friends to your friend. Yes you can talk about the cancer stuff, but you can also talk to them about just the general life stuff as well.” (Young person)