The first author conducted 10 interviews. Of these participants, their ages ranged from 25 to 60, and the sample was composed of two male and eight female participants. For further details regarding demographic characteristics of these participants, see Table 1. Participants have been given pseudonyms in order to protect confidentiality and anonymity. Two participants had been diagnosed with cancer previously, one of whom had undergone chemotherapy; however, both participants considered themselves to have recovered.

Table 1 Participant demographic characteristics

The present study identified five themes relating to the impacts of cancer including bereavement on siblings and how they are supported: changes in family relationships, sibling’s grief is forgotten, benefits of social support networks, supporting their sibling and caregiving and self-support.

In what follows, where quotations have been contracted, ellipses have been put in square brackets, and where context was needed for the quotations, further contextual information has been placed in square brackets.

“It definitely brought us closer together”: changes in family relationships.

Participants described the changes that occurred in the relationships with both their siblings and other family members. In terms of the changes in sibling relationships, participants primarily identified an increased closeness with their sibling who was diagnosed with cancer. For instance, Amy (sister, bereaved) expressed how her bond with her sister grew due to her sister’s cancer:

I think, if anything, it actually made us closer together. ‘cause I remember, like, I think in the beginning... she was a kid, she got to miss school, she was fine with it. And then I think, when it hit her, I think she started opening [up] more. She was scared. I remember she wasn’t really comfortable telling my parents, so I was the one she would talk to, you know?

In terms of changes in the amount of time spent together in the relationship, participants felt that the relationship changed in that they chose to spend more quality time with their sibling who had cancer. Amanda (brother, bereaved) felt that:

I would have visited him a lot more and we would have chatted. Chatted about everything and anything; music, rugby and… Everything that’s just day-to-day stuff. […] So, I suppose that’s where I would have called to see him a lot more than I would have previously and chatted more.

Participants also acknowledged their other family relationships changed because of their sibling’s cancer. For instance, participants identified positive changes in their wider family relationships resulting from their sibling’s cancer. Orla (sister, alive) identified positive changes in her relationship with her father:

But I’ve always been close to my dad, I think, honestly, and I talked about this a few times, since I think her illness actually made us closer. And because we were both going through something so horrible.

In terms of other relationships within the family unit and the family unit, participants also identified that the dynamic within the family and the individual relationships within the family unit were no longer the same after the cancer diagnosis and bereavement. Overall, participants identified struggles in adjusting to their new family roles and navigating their family relationships during their sibling’s cancer and following their sibling’s death. Paul (brother, bereaved) described the changes in his family unit:

[Our family] dramatically changed. I mean, it’s not the same at all anymore […] The dynamics in our relationships… Well, it does have some resemblance to what it was before but, I mean, it just so dramatically changes everything.

Similarly, Anne (brother, bereaved) identified changes across her own siblings in the aftermath of her brother’s cancer and death:

I think people struggled to find their position after [my brother’s] death because of his role in the family [as the eldest child]. […] And, so, when [my brother] passed away, the goalposts, things changed [for the rest of us]. Who does what? Our parents are elderly, our parents need care, [so we needed to figure out how to navigate that]. And our relationship with [others in] the family all kind of changed a little bit.

“It felt like my parents lost a child, but it wasn’t as if we lost a sibling”: sibling’s grief is forgotten or overlooked.

Participants confirmed that their grief was not acknowledged in the same way as the grief of their parents. Amy (sister, bereaved) recounts that “It felt like my parents lost a child, but it wasn’t as if we lost a sibling. I don’t know if that makes sense”.

Speakers also felt that as adults, their grief was less important than the grief of other family members and that their role meant that they could not grieve. Anne (brother, bereaved) felt that:

I remember thinking as a sibling, you do feel less justification [compared to other family members]. You can’t wallow. You can’t grieve in that way. You don’t feel justified. Adult sibling grief is about supporting others […] But my grief is valid and you nearly feel a little bit like you’ve less right to grieve [than the parents or wife]”.

This feeling that siblings’ grief is overlooked or forgotten was also reflected in participants’ perceptions that the support organizations and psychological support services that were available for family members of cancer patients were not designed for siblings or applicable to them. Orla (sister, alive) recounted the following in this regard:

This is gonna sound so stupid… I didn’t know there was [any support available]. […] One day, [I saw] a big sign for support for relatives of people with cancer. I can’t remember exactly what I think it was in anyway, I saw a big sign. And I think this just goes to show how preoccupied I was, I was like, ‘Oh, that's not for me. That’s for people who are related to somebody with cancer.’

Relatedly, participants did not know where to look for support and identified a clear lack of signposting of services for siblings. Amanda (brother, bereaved) recalled that:

It honestly never occurred to me that I should look for any help or even support group. I don’t even know if there are any support groups. If you’ve cancer yourself, there actually is very little and you really have to go looking for it yourself.

“I would say definitely find someone to confide in”: benefits of social support networks.

Participants noted an overwhelming sense of kindness from their social network throughout their sibling’s cancer trajectory. Orla (sister, alive) recalls the way in which her social network offered her kindness during her sister’s cancer:

There’s lots of little memories… all I remember really is the kindness. The constancy of them all, you know, that they were always there to kind of check in on me and help and offer [support]. They made so many offers of help, offers to do things, to drop food up to the hospital, whatever. But really, it was just that I knew they were there.

Participants also disclosed the importance of having somebody to talk to whilst dealing with a sibling’s cancer. Amy (sister, bereaved) states: “I would say definitely find someone to confide in. Because it does get heavy. Yeah, just find someone you trust”.

There were also indicators among participants that everyone in the family unit copes differently and that it is important for wider social support networks to identify and acknowledge that they must adjust their support to suit the needs of each respective person. Anne (brother, bereaved) confirms that social networks need to ensure they are not neglecting to talk about the cancer:

Some people [family members] will want to talk about it. And one of the worst things you can probably do is ignore it. Like, you know, [pretend] that it’s not happening. And so be receptive to what the person wants to talk about.

Participants recalled specific individuals or scenarios that stood out for them and that functioned in a way to provide support or alleviate the pressure that came with being a sibling of a cancer patient. Paul (brother, bereaved) recalled that:

There’s lots of small, innocuous things that seem innocuous that are actually in hindsight, they’re huge. You don’t need to have these big sort of displays of comprehension or understanding or, you know, insight or something like that. […] I’ll tell you one story. I was heading out [to visit his brother with cancer abroad] and I left my phone in the house but, my dad's best friend, we’d given him keys to the house and he’d spotted my phone and then, during the workday, he drove it out to the airport and, I mean that was just so extraordinarily selfless and helpful. And so, that was definitely just on his part, it was just understanding, like real empathy. I wish it had been more essentially what [his dad’s friend] did, which was empathize with the situation. And, you know, in that circumstance, there was a clear line of action.

As part of the importance of their social network, participants acknowledged the importance of communication. For instance, participants identified that communication across a variety of avenues was necessary. Many participants felt that communicating with a friend, family member or a professional through socializing or talking about their experiences was a vital aspect of feeling supported as they navigated their sibling’s cancer. Amanda (brother, bereaved) disclosed:

I do think talk, communication is key. As I say, it doesn’t have to be part of a group. It’s kind of, it’s the one person. Yeah. You know you’d hope everyone would have one good friend and they don’t. Not everybody does. I think if everybody did, that would be, that would make these things much easier.

“You become a lot more caring towards them”: supporting and caring for their sibling.

Participants acknowledged that there was shift in their roles within their sibling relationships during their sibling’s cancer treatment. For example, Anne had an increased sense of protectiveness and desire to support her brother who had previously acted in a caregiving manner within the family dynamic but which ultimately switched when he was diagnosed with cancer: “I think that that changed, I suppose maybe the dynamic of him being the carer… I suppose in that sense we became kind of protective of him”.

Similarly, Charlotte (brother, bereaved) indicated that she felt a greater duty to look after her sick brother: “you become a lot more caring towards them, not that we weren’t [before] but, you've kind of gone, ‘okay, he’s the person who needs to be looked after here’”.

Some participants also reported that they adopted a caregiving role or took on a supportive role in order to provide support to their sibling during the cancer process. Maria (sister, alive) identified:

I mean, to have somebody as sick as [my sister] in your home. And yet,, we were absolutely, you know, minding her. I mean, they were telling us we just would not think that she was ever going to make it.

Paul (brother, bereaved) also felt that he was trying to find his role within the family in order to be able to offer support to his brother:

I definitely switched into a kind of a caregiver role, I suppose. But, I mean, we were we were all just sort of trying to find our roles and to take care of ourselves as best as possible and then enable each other to take care of themselves as well.

In some cases, where the severity of the siblings’ needs precluded the possibility of caregiving, participants acknowledged the emotional support that they provided to their siblings with cancer. Isabel (sisters × 2, bereaved) described how she went about supporting her sister with cancer:

[The support was] more complicated, say, than caregiving because she was in hospital all of the time. So, she had the care. So I wouldn’t be bold enough to say that I was doing the caregiving, but I certainly do support the role of handholding.

“I got out and I put on my walking boots and I walked those hills”: self-care strategies to support oneself.

Participants also identified a variety of ways in which they engaged in self-care practices to support themselves. Overall, most participants acknowledged the significance of exercise and supporting oneself through physical activity. Isabel (sisters × 2, bereaved) maintains that:

One of the things that was really good for me mentally was I got out and I put on my walking boots and I walked those hills on my own, I wouldn’t go with anybody for the first few months and I put on my headphones. And I walked and walked and walked and a certain song would come on. And I’d realize there were tears running down my face, I didn’t I wasn’t conscious of it, you know.

Other participants recalled that staying positive helped them the emotions associated with having a sibling going through cancer. In particular, some participants adopted a positive attitude when they observed others around them using such an approach. Amanda (brother, bereaved) used positivity as a way to cope when she witnessed the way it allowed her brother who had cancer to cope with his illness:

I suppose there’s a saying you’ve got to live until you die, you know, and that’s what he [her brother] had chosen. And that's why he didn’t take the clinical trial. He wanted to try to live. And do things on his own terms without being controlled by appointments. You know, so he made it. He was very. He was very strong […] But he faced it all with, you know, incredible bravery […] Yes, I would say positive attitudes.

Ken (sister, bereaved) noted that journaling was a useful self-care strategy that he used in order to process his sister’s cancer.

Another thing that I did was journal. I journaled quite a lot, I still find it quite useful. And I find it very useful for going to bed that, if you just get everything out on paper, at least then you don’t have to think about it when you’re lying down. And that works really well. […] I think it’s just even if it’s only like, you know, two or three lines, just go ahead [and do it], right? Because I often think your brain is like a computer. […] You have limited amounts of space, you need to get it out, you can’t always keep it in there. Otherwise, it’s just going to melt.