In total 21 survivors and 18 caregivers were approached, 22 (11 survivors; 11 caregivers) consented and took part. Interviews were conducted in participants’ home or a hospital room. In two cases, survivors and caregivers were interviewed together. Interviews averaged 53 minutes (range: 15–140). Data saturation was reached by the 22nd interview.
Tables 2 and 3 show participant characteristics. The most common tumour type was astrocytoma (survivor sample) and medulloblastoma (caregiver sample). Most survivors lived with their parents, not independently. Few survivors were employed (n = 2) and the majority were single (n = 10).
We found four over-arching themes: (1) preferences for support and support services (unmet needs); (2) decline in support; (3) reasons for not obtaining adequate support; and (4) the role of long-term follow-up care. Key learning points are summarised in Table 4.
Theme 1: preferences for support and services
Achieving key life events
For caregivers and survivors, achieving “normal” life goals such as paid employment is very important, and the prospect of not achieving these caused concern. Most survivors experienced difficulty or were unable to find employment. Survivors expressed that they need more information on gaining employment. Unmet support needs included help with finding employers who are “disability friendly”, help preparing CVs/application forms, and interview support. Survivors’ financial issues were a major concern to caregivers, in particular if and how the survivor could support themselves.
The main challenges, well is finance, financial…It’s stressful cos I want [survivor name] to have some income, you know, cos I can’t support her, do you know what I mean…and that’s what worries me. [C8, F, 58Footnote 1]
Difficulties with employment and finances are linked with independent living. Almost all survivors were still living with their family. They hoped to someday live independently but acknowledged this may take time.
I don’t even know how to cook now and I’m 27 and that’s because it’s very slow…I’m still picking up the pieces now…And how long I’m going to be picking them up for I don’t know? [S6, F, 27]
While independent living was a key goal for survivors, caregivers highlighted that for some (e.g. those with many physical impairments or learning difficulties prompting a need for continued intensive support) this goal is not achievable. Caregivers’ major concern was what would happen when they were no longer able to care for them.
That’s one of my biggest fears, not saying [name of wife] couldn’t look after him but…erm if owt happened to me then how would they cope? [C2, M, 58]
Caregivers expressed a need for more information on support to help survivors transition into independent or assisted living. This would help them plan ahead and decrease their anxiety about the future.
Developing a social network
Survivors and caregivers discussed that forming social relationships has been difficult. Some survivors indicated they would like support with making and maintaining friendships, finding social interactions difficult; “Like sometimes in my head I’m thinking ‘don’t trip up, don’t trip up’” [S1, F, 16]. Several survivors said that they would like to meet other survivors, but connecting with peers (i.e. similar age group) is the most important factor. Caregivers were equally worried about their child’s lack of social life and were supportive of meeting individuals with shared experiences through organised social support groups.
They’ve all got something in common, they don’t have to be talking about that all the time but they can all find this common ground. [C8, F, 54]
Navigating the future
Caregivers recalled that during the survivor’s diagnosis and treatment, they were not always aware of potential late effects, or they may not have fully realised at the time.
I’ve kind of had to go back over it myself to make it make sense again now, cos I think you’re given a lot of information in the early days but it just doesn’t go in… [C10, F, 49]
Caregivers highlighted that better timing of information on late effects and the need for ongoing contact and support alongside the survivors changing needs were vital. As this timing is difficult to get right, they suggested that such information could be reintroduced regularly.
Personalised, individualised mental health support
Mental health services were considered crucial. Survivors explained this was still needed long-term due to a growing understanding of their diagnosis and the experience of late effects.
I had counselling when I was 7 but I still want help now I’m 25... I don’t want that help to have just stopped…cos there’s still things that are happening and changing… the side effects never leave you if you know what I mean? [S8, F, 25]
The majority of survivors indicated that although they had received counselling during treatment, this subsided in later life. Some survivors stated that they would appreciate having a mentor or somebody who could provide 1-1 help. This was echoed by caregivers, some of whom felt that this was one of the greatest unmet needs.
I would like there to be like a mentor or a person who you could ring…somebody that you could contact to talk to about that certain thing that you want information on. [C8, F, 54]
Survivors wanted this mentor to have knowledge of brain tumours to help guide them through life experiences complicated by late effects. Caregivers wanted a reliable point of contact.
Theme 2: decline in support
Life after education
Survivors and caregivers described support from education generally as positive. Support provided included care assistants (e.g. for mobility/personal care), additional time, or adapted educational aids.
I had modified papers, they were on green paper and a bigger font…It’s the spacing really that’s more helpful. [S11, F, 17]
High schools and colleges were often given formal advice and guidance to help them support survivors (e.g. through vision support officers). Survivors and caregivers described that difficulties started after finishing education, when support stopped and survivors felt at a loss of what to do next.
When I finished college it’s like – what am I supposed to do after that? [S10, M, 30]
Diminishing support getting further away from treatment
All caregivers were particularly positive about support received from clinical teams, charities, and support services, while their child was in treatment or acute care. However, many felt that support fell away as the child moved further away from treatment.
At the time it was just hospitals all the time. And I think [survivor] felt quite safe and I think it sounds quite a strange thing to say but we both felt quite safe but when you come out of hospital…you feel really lost… [C4, F, 56]
Caregivers and survivors described being unable to access support services once they reached adulthood.
Theme 3: barriers to not obtaining adequate support
Practical barriers to accessing support
Caregivers said they were not aware of long-term support available or how to access support. “We didn’t really know what other support groups were in place…so we didn’t really know where you would go and look” [C1, F, 47]. Other barriers include support or information not being in an accessible format for survivors (e.g. due to vision/cognitive issues), long waiting lists, and lack of funding.
The waiting lists for everything are just immense…one thing we’ve been trying to get help with is to see a psychologist…we’ve still not seen a psychologist and this is 2 years on [C9, F, 50]
Equally, location of support services was challenging, complicated by difficulties with transportation. This was especially salient in participants living in rural areas:
A lot of the problem we have is because were in this dead zone – were surrounded by big Cities, it means we have to travel to the City to do anything [C9, F,50]
Having negative experiences of support services could cause reluctance to access support. Some describe bad experiences which include being let down or forgotten about.
They [the charity] sent a lady who was going to take him out and meet up with some other young man quite near us but that never transpired. [C6, F, 53]
Another issue identified is the lack of brain tumour specific support. Some survivors received support from cancer charities but felt that this was not suitable for their experiences, in particular their late effects.
I seeked out help but I found they always put me in learning disability groups but not brain tumour type… [S7, M, 24]
“Getting on with it”: emotional barriers to support
Survivors and caregivers explained a main reason for not having accessed support was that they were just “getting on” with life. Most caregivers had never received any formal support for themselves (e.g. counselling), instead relying heavily on friends or family for emotional support. Caregivers appeared to not prioritise their own needs, often saying they do not need it or choosing to cope on their own:
It’s hard but it’s called life and you have to get on with it! [C8, F, 54]
Survivors also expressed a positive outlook on life, and if they could, they chose not to seek formal support and manage on their own:
Like with the emotional stuff I just get on with it. There’s nothing like…like my chemo does, did affect me but I’ve just got over it. [S5, M, 18]
Both survivors and their caregivers expressed that “getting on with it” is synonymous with “seeming to be in control of the situation”. Survivors typically saw this as a positive outcome, but some caregivers indicated they had few choices but to “get on with it” and cope.
Theme 4: the role of long-term follow-up care
Importance of follow-up care
Survivors and caregivers said the main benefit from attending long-term follow-up appointments was reassurance. Survivors described these appointments as a reassuring yearly check-up. Equally, caregivers found these appointments a valuable opportunity to ask questions and check late effect symptomology.
Just to get checked up, it’s an MOT [annual test of vehicle safety in the UK]. [S1, F, 16]
Many caregivers also said this service signposts them to other supports (e.g. charities) which could help the survivor live better.
Transition from children’s to adult services
Some survivors and caregivers described the transition from children’s to adult services as uncertain and confusing. Some survivors and caregivers said more support and information is needed to aid this transition.
The transition was easier where there was continuity in clinical staff and/or hospital.
It was quite an easy transition, it was same people, same place! It is that familiarity, it’s that person…I don’t have to explain everything, I don’t have to explain everything with [survivor], cos they know – they’ve been there all the way through! [C9, F, 50]
How follow-up care could be improved
A small number of survivors indicated that clinicians did not engage with them enough or fully explain their medication or treatments.
They need to engage more with the child than they do with the parents… I didn’t understand why I was on medication, apart from my Mum telling me…but a consultant physically did not tell me why I was on it, so when I would go pick my prescriptions up at the age of 18 and the consultants saying why are you on this…I would say ‘I don’t know’. [S6, F, 27]
With many survivors struggling with cognitive deficits, the use of lay language is essential. Survivors wanted clinicians to check their understanding:
Sometimes some of the doctors say things…again it’s a bit difficult to understand them or process what they’re saying, I don’t quite understand the terminology. [S8, F, 25]
Caregivers hoped support could be improved by extending it beyond just medical care to holistic or social well-being care, e.g. job application support.
Survivors and their caregivers report a number of similar goals with subtle differences in their unmet support needs; in particular they both express a desire for more emphasis and information on future outcomes. For survivors this includes the ability to live independently and assistance with attaining this goal. Caregivers expressed a need for financially centred information.