Subtheme 1.1: varied types of support

Patients reported accessing or awareness of various types of peer support, including face-to-face/online forums, and being introduced to, or knowing, other patients who shared their diagnosis. The majority of face-to-face support groups were not disease specific, but accommodated people with any haematological cancer. Online cancer-specific groups referenced included Myeloma UK, CLL Support Association and also Facebook groups.

Informal support from family and friends was particularly important, while nurses, and, sometimes doctors, also contributed. Patients used NHS and private counselling services and complementary therapies such as acupuncture. Macmillan centres were attended by some, as well as support days and events hosted by charities, such as Myeloma UK.

Subtheme 1.2: knowing where to find support

Most patients knew about online and face-to-face support groups, even if they did not want to use these resources. It was not always clear how patients became aware of support groups; some were told by their doctor or nurse (P10, P12, P28), or received information via leaflets (P5). P19 and P3 specifically noted finding websites/forums based in America; P19 found ‘it wasn’t anything particularly helpful’ due to their non-UK focus.

Some patients contacted others who shared their diagnosis via their general practitioner (GP) or family and friends. For example, P14’s GP organised for someone with the same condition to speak to him: ‘hearing from somebody who’s been through it all and got the badge certainly helped’. P33 had requested a ‘buddy’, something P21R would have welcomed for herself and her relative: ‘someone that’s like a year in to having this, who would sit down and explain what they discovered and how it works, and what to expect’.

Some patients (P1, P4) requested counselling, while others (P9, P13) were offered a referral by nursing staff. Nurses also informed some patients (P8, P25) about other measures that might help, such as therapeutic massage. P16 had not been told about Macmillan support centres, but would have found this useful; it was unclear whether other patients were informed about them.

Subtheme 1.3: impact of disease subtype on accessing peer support

A number of patients commented on difficulties due to their cancer subtype, such as its rarity (P5, P25, P33). Because of this, P25 felt ‘on me [sic] own’ and unsupported, noting that neither her nor her daughter could find any support groups. This could be problematic even for patients who shared the same diagnosis; P5 explained people at her support group all had lymphoma or leukaemia but she didn’t perceive herself as having the same disease due to differences in site, clarifying: ‘I have [the same cancer] but it’s in my stomach’.

Subtheme 2.1 perceptions of illness: distancing, distraction, fighting back and maintaining hope

A number of patients didn’t want to ‘dwell’ on their cancer and discussed measures taken to actively distance or distract themselves. Instead of seeking specific support, such individuals focused on other activities, with P17 saying: ‘We have quite a lot of interests, so we’re always doing things and I think that’s good because it just takes your mind off things’. P27 and P29 took a philosophical approach to their cancer: ‘there’s nothing you can do about it…you make the best…of what is available for you’ (P27). Patients did not want to be defined by their condition, or for their condition to ‘rule [their] life’ (P3). P5 attended a support group infrequently, as they didn’t want their cancer to ‘represent’ them. Similarly, P35 commented: ‘for some people [at support group] it’s like their whole life is having myeloma. I just don’t want to be like that’.

Many patients highlighted specific coping strategies to distract themselves from their CHC, including exercising, dog walking and gardening. Having another focus was important to P3 when trying to accept their diagnosis and deferred treatment (watch and wait): ‘[running] made a massive difference because I’m doing something…I’m fighting back’.

Some people felt they needed to stay positive and maintain hope with respect to their cancer and future outcomes. P24 adopted a ‘positive mental attitude’; P25 described focussing on future events as ‘summit [sic] to aim for’. P13 felt that support group attendance might interfere with their positive approach due to the sharing of negative experiences, explaining: ‘I wouldn’t want to hear all of the things, you know, “well, it did this to me and it did that to me, and I thought I was on death’s door”, …I need to keep buoyant and positive about it’.

Subtheme 2.2: perceptions of personality

Some patients felt they were not the ‘type’ to attend a support group: ‘I am just a bit introverted meself [sic]…I’m not a kind of a support group type person…’ (P21). Similarly, P27 described such meetings as ‘not for me’, but did acknowledge that this could change in the future. While P10 appreciated that support groups could be useful for others, they found them unnecessary due to them being inherently positive: ‘I have a positive attitude and I don’t feel I need support’.

Subtheme 3.1: varied perspectives

From a positive perspective, support groups were described as ‘very valuable’ (P1); P6 described their group leader as their ‘rock’. Meeting others in a similar situation provided patients with reassurance and comradery: ‘you’re not on your own but to know somebody else is going through it, and you can tell her your worries’ (P3). P33 also noted that their efforts to maintain positivity within support groups had helped others, saying that members had remarked: ‘you’ve cheered me up and made me feel positive because you’re always so positive’.

While positive experiences were welcomed, hearing negative accounts could be frightening, reflecting patients’ desires not to be exposed to these stories (see subtheme 2.1). For example, P35 explained: ‘I thought I’d find [support group] terrifying, which I sort of do really because it’s like people just talking about their terrible stories a lot of the time’. P7 highlighted that patients may hear both positive and negative accounts, with the negative making them feel like they were ‘in a queue sat there waiting to die’.

Subtheme 3.2: changing preferences over time

Patients commented on their decisions regarding when to seek group support, often depending on the status of their cancer. For example, some patients (P4, P8) did not attend face-to-face meetings during treatment due to fatigue, illness or infection risk. Engagement could increase when they needed information or advice, such as when making treatment decisions. As explained by P3, who became more active on internet forums at relapse: ‘A lot of people were saying, yeah I was the same as you…I just wanted to forget about it but then when you have something to remind you that you’ve still got the condition a lot of people start to be more active’. Some patients on observation didn’t feel a support group was necessary as they were ‘coping well’ (P17), or because their cancer didn’t ‘affect [their] lifestyle’ (P20).

Subtheme 3.3: information provision

Patients generally found support groups and websites a useful source of information, and some noted that they themselves had provided information to others (P6, P13, P19). On websites in particular, patients could choose what information they wanted to engage with, and when. For example, P19 found negative material unwelcome saying: ‘it used to scare me’. P3 highlighted the importance of understanding that ‘everyone is different’, explaining: ‘you have to decide what suits you, what you feel comfortable with and learn to take the advice that’s useful for you and ignore the advice that’s less useful’.

Subtheme 4.1: emotional and practical support: reassurance, companionship and the importance of family and friends

Family and friends provided significant emotional support to the majority of patients; for example, P2 commented: ‘the people who are close to you are very important because they can keep you going…I think they’re very important in reassuring you’. Patients also acknowledged the importance of practical support, including relatives or friends accompanying them to hospital appointments, reminding them what was discussed, and learning about their condition. P9 explained ‘my daughter knows as much about my treatment as I do. She keeps really up-to-date with it and she’s with me most treatments’. Contrastingly, P3 attended appointments alone, because his wife would ‘worry herself silly’, as appointments were ‘more stress inducing’ for her than for himself. P34, who attended appointments alone due to his wife’s work commitments, acknowledged that, with hindsight, practical support would have been useful.

Emotional and practical input from friends was particularly important for patients without immediate family support. P8, who lived alone, described her friend as ‘marvellous’, explaining: ‘I haven’t got any family…She was just there for me the whole time’. P33, whose partner had died, felt the need for practical and emotional support: ‘I have to do all my own research, all my own ringing around and sometimes I think I just wish I had that person…I want somebody just to hold my hand and go, I’m going to sort that for you’. For some, having family did not guarantee support, as exemplified by P25, who relied on a friend to provide emotional and practical help, despite living with relatives.

Subtheme 4.2: disease characteristics and family dynamics: impact of the cancer, perceived response of others and life context

Patients’ decisions about disclosing their CHC impacted available support, and were often influenced by factors relating to their cancer. When patients felt their diagnosis would impact their lives, they often chose to tell family and friends. For example, P22 explained: ‘we knew we were always going to always be at hospital…so we took the road that we would tell them’. In contrast, when patients didn’t feel their cancer was noticeably impacting them, for example when on observation, they did not always disclose their diagnosis, thus eliminating opportunities for support. P2 said: ‘close family knew about it and close friends and that was it because I could get on with me [sic] life. I could manage it. Nobody needed to know’. P20 also highlighted the nature of ‘watch and wait’, explaining they did not inform people about their diagnosis as: ‘they wouldn’t understand that there’s no treatment required’.

Patients hesitated to disclose their CHC to children for various reasons including their young age, because they were undertaking important exams, and/or because they did not wish to be ‘a burden’ (P32). P35 knew she had to tell her children as her diagnosis was ‘a big life-changing event’ but was unsure about the timing, explaining: ‘I just wanted to know if I could carry on my life without telling them’. Being on watch and wait allowed P11 to keep their diagnosis from their children, who they believed were too young to understand/cope.

Even where family and friends were informed about the diagnosis, feelings were not always shared. For example, P7R explained that they did not discuss their worries in order to ‘protect’ family. Similarly, P5 felt they had to be strong for others, so were providing, rather than receiving, support. Some patients did not share their feelings about their CHC even with close family, or were reluctant to ask for help, so could not be supported. For example, P2 described shock at their diagnosis, but his wife had said: ‘the trouble was you didn’t tell me all this so I couldn’t be involved’. P25 described feeling lonely, but wanted to ‘make it easier for them [family]’, admitting: ‘I won’t ask nobody for help. If somebody, if me [sic] cousin had offered to come, I would have said, “no I’m fine”’.

Family dynamics could change as a result of the CHC diagnosis. P19 said: ‘I didn’t feel well and for the first time ever, my family just took full control of everything and normally I’m the one that’s like the matriarch’. However, while the patient was grateful, the diagnosis and changing circumstances were not accepted by everyone: ‘[Daughter] wouldn’t even talk about it and to this day she doesn’t really. She just, you know, she just likes her mum to be mum, and functional’.

Subtheme 4.3: the importance of support for family and carers

This was discussed by several patients, with P12 explaining they felt support was ‘just as important for the family as it is for the patient’. Patients appreciated that family are also impacted by their diagnosis; P11 suggested ‘it’s probably harder on my wife or my children’. Similarly, P28 remarked that: ‘The worry is done by the carers’. In contrast, P6 acknowledged differences in perceptions of burden between the patient and their family: ‘Mentally, [husband] forgets sometimes and he admits—“I forget you’ve got leukaemia”. But it lives with me 24/7. I never forget that I’ve got it’.

Patients’ families found support in various settings. For example, P12 and P13 described nurses offering support to relatives, with P12 commenting that speaking to the nurse ‘kind of settled [wife] a bit’. P11 encountered another patient, also with myeloma, and explained how their wives then talked and found this useful: ‘[Wife (of P11)] was a bit left in the dark she felt, so she really enjoyed talking to [contact’s wife] about how she felt’. Support was also available via dedicated Cancer Centres, with P18’s partner accessing counselling and a therapeutic course. P28 praised Myeloma UK for their approach to supporting both patients and carers, including holding sessions specifically for carers at their events.

In contrast, some family members commented that their support needs were unmet. P7R described there being no information about support for relatives, saying ‘it’s lonely’, and highlighting that the carer also has a ‘burden’. P21R felt unsupported, suggesting counselling should be provided for patients and relatives. Sometimes support was available, but relatives were unwilling to accept it. For example, P19 commented that her daughter really needed support but wouldn’t access it: ‘the Macmillan nurse was really good and she offered to speak to [daughter], and she tried to ring her and she didn’t want to talk about it’.

Subtheme 5.1: perceptions of support from HCPs

Nursing staff were considered a valuable source of support, often providing reassurance and encouragement for patients. For example, P14 said: ‘[Nurse] has been there for me and guided me, cajoled me, pointed me in the right direction’. There were differences in the type of support patients perceived nurses as providing; P5 described it as ‘medical’ but ‘not necessarily psychological’, while P7 said: ‘As well as your physical condition [nurses] were bothered about my emotional condition…’.

A number of patients (P1, P16, P34) reported support from nurses as reliable and always available. In contrast, others were reluctant to access such input; P4 explained: ‘I didn’t feel I could be ringing [nurse] every day…because obviously she’s got lots of other things to do and lots of other people to deal with’. P4 acknowledged most nurses were ‘understanding’, but felt some trivialised her concerns: ‘you’d ring up and they’d sort of brush it off’. P4 and P33 expressed disappointment when nurses reneged on their stated intentions, including referral for counselling, and providing reassurance to family members.

Interactions with nursing staff appeared to vary according to CHC management, with patients on treatment (attending regularly) having greater contact than those being observed on watch and wait (attending less frequently). For example, a number of patients with myeloma (P11, P14, P18, P28), in frequent contact with nurses during treatment, discussed the importance of receiving regular support: ‘we’ve had a lot of dealing with [nurses] and they’re spot on’ (P11). Similarly, P3 said: ‘The only time I can remember talking to nurses a lot was when I had my treatment and of course they were absolutely superb’. Preferences were found to vary among those given contact details for nursing staff during periods of observation, with P2 choosing not to use these; while others appreciated this information and felt support was available if needed (P13, P17, P26). Contrastingly, P13 (solely observed since diagnosis) perceived nurses as providing ‘holistics…mind, body and soul’ care to those on watch and wait, in order to ‘free up the doctors, so they can see the patients that maybe need a little bit of extra time’.

While most comments about HCP support were about nurses, some patients referred to support from doctors, which was mainly, but not uniformly, perceived positively. P9 felt their doctor was ‘very supportive and helpful’ when they were upset about needing chemotherapy, and P12 felt their doctor had ‘plenty of empathy’. In contrast, P4 described their doctors as speaking on a ‘consultant level, with no emotions’. A number of patients highlighted positive interactions with their GPs, with P30 describing theirs as ‘fantastic’. However, others (P6, P13, P23, P25) felt their GP lacked knowledge about their CHC. Three patients mentioned receiving support from other HCPs outwith the NHS, including nurses from Myeloma UK (P29) and Macmillan (P13, P19).

Subtheme 5.2: counselling and complementary support

Seven patients discussed their experiences of counselling, with perceptions varying markedly. P1 felt this had been useful, facilitating the realisation that they had ‘experienced a tremendous trauma’, which had impacted their behaviour in response to treatment and infection fears. Conversely, P25 felt counselling was ‘a complete waste of time’ and not what she had expected, explaining: ‘To me, a counsellor is somebody that will counsel you and advise you. She never opened her mouth’. Nevertheless, P25 did feel the service had helped her ‘come to terms’ with her diagnosis. P33 felt their psychologist only cared how they felt about their treatment, and not their well-being more generally. P35 described both positive and negative aspects of counselling, explaining that while it was ‘helpful’ it could also be upsetting to discuss their feelings.

Four patients (P9, P16, P19, P22) referred to Macmillan services, all positively, though P22 felt these weren’t aimed at her as she wasn’t ‘terminal’. A number of patients discussed complementary medicines including acupuncture (P9), therapeutic massage (P8, P25) and reflexology (P23). P2 talked at length about the reassurance, support and holistic care provided by the homeopath he had attended for several years, comparing interactions to those with their doctor: ‘I used to get different doctors and you just felt as though you were part of a process but…my homeopath I go to, we sit and we talk about my symptoms, how I’m feeling’.

Subtheme 5.3: unmet emotional needs

Some patients highlighted unmet emotional support needs. P4, who was waiting for counselling, noted: ‘I didn’t feel like there was anybody professional shall I say, who I could talk to and just tell them how I felt and that I was really scared…’. P25 commented that: ‘[leaflets] could do [to include] a little bit more on your thoughts. Yeah on your mind, on the emotional side of it’, while P5 felt they would cope with their CHC psychologically, but ‘at a price’.

A number of patients identified key points in the CHC trajectory which caused emotional turmoil, but where they felt their needs were not met. Many highlighted the ‘shock’ of diagnosis, which was described as ‘a huge emotional rollercoaster’ (P7), while P13 talked about becoming upset when she discovered 'lumps’ which could indicate disease progression; others described feeling shock at being told they would need treatment after a period of observation (P3, P15). Despite the significance of these issues, patients identified a lack of emotional support at these critical junctures in their lives. Concerns could also be continually present, for example patients alluded to the difficulty of living with the uncertainty caused by their cancer diagnosis: ‘it will flare up again…that causes anxiety… you don’t know when…it’s lurking there’ (P4).