you feel a bit more kind of serious about it the things that you don’t want aren’t like childish anymore they’re more kind of erm you know you want the hospital appointment to go well or the operation to go well or the levels to, you know you want her to her blood sugars to be better and you end up not really thinking as much about the little things and thinking more seriously. (Lines 166-176) EMPATHY Jessica: …I just think it’s hard for her because she looks at me and thinks how come she’s not like that… (Lines 104-106) Leanne: …it upsets me when I see her there crying cos she’s in pain with this thing. (Lines 186-187) Lauren: …I do feel sorry for her. Losing a child is probably the hardest thing you’ll ever have to go through… (Lines 218-220) REALISATION OF EMOTIONS Interviewer: Do you think that your brother’s condition affects you emotionally? Emily: Yes [laughs] as I’ve just found out! Yeah I didn’t realise I was like close so close linked to it but talking through with it, it is quite emotional, yeah. Interviewer: Yean and like I said I think it’s because you’ve probably never spoken to anybody about it, especially somebody that you don’t know [E: yeah] and it’s probably quite an unusual situation… Emily: [Interrupts] like asking questions about it has made me think, so yeah, it is upsetting and things [laughs]. (Lines 157-165) Emily: …like being with him is good like I’m happy kind of thing but talking about it now [laughs] it’s quite yeah emotional. (Lines 170-171)
Superordinate Theme 3: The Impact of Having a Brother or Sister with a Life-Limiting or Life-Threatening Condition on Siblings’ Relationships with Family, Friendship Groups and School Systems Subordinate Themes Emergent Themes Illuminatory Quotes Relationships with Brothers and Sisters Sibling relationship important Siblings engage in activities related to need Siblings engage in typical activities together Providing help for unwell sibling Spending time together Jealousy/bitterness Siblings want to spend time together I haven’t known her without having it Separate identities Sibling rivalry Understanding as a SIBLINGS ENGAGE IN ACTIVITIES RELATED TO NEED Interviewer: Can you tell me about Mi [brother]? Molly: Erm….he sometimes does do signs with me. Interviewer: Does he, he does signs, ok, what sort of signs? Molly: Hello and, and I watch Mr Tumble with him and it we, today we just done some erm signing to show my Mum. (Lines 1-5) SIBLINGS ENGAGE IN TYPICAL ACTIVITIES TOGETHER Lucy: Erm we sometimes play music together if I’m playing the piano and then she might play the flute and then sometimes we play outside in the garden and stuff and make up games and inside and play board games and stuff, yeah… (Lines 19-22) Lauren: …when we when I do go over to like you know sit with him or anything like that we watch a film or you know, he likes to play erm with Lego as well, little Lego things erm and we have a go with that sometimes… (Lines 58-61)
Superordinate Theme 4: Within-Child and Systemic Factors that Help Siblings Feel Supported Subordinate Themes Emergent Themes Illuminatory Quotes Coping Mechanisms and Resilience They’re still family To me he’s still my brother Don’t fear it Need for resilience Positive outlook Prioritisation Humour as a coping mechanism Resilience Normalisation Normalisation of severity Normalisation of equipment Normalisation of medical procedures Normalisation of treatment procedures Hope for the future RESILIENCE Lucy: it doesn’t affect me badly or anything so I don’t get into upset and stuff like that…yeah. (Lines THEY’RE STILL FAMILY / TO ME HE’S STILL MY BROTHER Emily: It’s the fact that like they’re still family don’t think of them as anything else just cos of their illness. (Lines 242-243) Interviewer: So can you tell me what having a brother with a life-limiting condition, what does it mean to you? Emily: {Pause] What does it mean to me, erm [laughs, pause] to me he’s still my brother…I’m gonna cry…[laughs]. (Lines 62-66) DON’T FEAR IT Emily: It’s an illness and as long as you’ve got information on it not to be feared don’t fear it, deal with it… (Lines 261-262)
LACK OF SIBLINGS GROUPS Jessica: …there’s not that many especially set up just for siblings groups, erm, yeah. (Lines 222-223) LACK OF SUPPORT FOR WHOLE FAMILY Leanne: …I don’t think they ever really sat us all down together… (Lines 489-490) LACK OF TALK Leanne: …bringing in my Mum, Dad, me and E and having a talk about it then because we never did that. (Lines 368-369) LACK OF MEMORABLE SUPPORT Leanne: …there was no kind of other support like that but I suppose there is not really a lot you can do, I don’t know to be honest but I just remember vaguely there being someone just asking me how I were… (Lines 305-308) LACK OF EXTERNAL SUPPORT Leanne: …you know there weren’t, you couldn’t go on’t internet and talk about it or anything, I think I was too young to go to any groups or anything or we didn’t know about any so there wasn’t really anything there… (Lines 463-466)
Siblings Experience Barriers to Support Oppression of sibling voice Barriers to talk Barriers to peer support Sweep it under the carpet Avoidance and denial BARRIERS TO PEER SUPPORT Interviewer: Do they, and do they come round to play here? Molly: Sometimes they do but not often. Interviewer: Ok so where do you play with your friends then? Molly: Erm at school and at their house and at my house…sometimes. Interviewer: So why do they not come round here very often? Molly: Because erm [long pause] because my Mum erm always erm hasn’t talked to their Mum yet. (Lines 73-79) OPPRESSION OF SIBLING VOICE Lauren: I’ve never been asked that before. (Line 161) Lauren: I’ve never really found anyone that’d willingly speak about it cos I think a lot of people are still finding it hard, and I guess they’ll always find it hard to speak about erm, but it’d be nice, you know to have that thing in common, be able you know to say you know how I felt… (Lines 548-552) BARRIERS TO TALK Lauren: …and I can’t really talk to Mum about it, erm one she’ll get defensive and two it’ll just upset her even more… (Lines221-222) AVOIDANCE AND DENIAL / SWEEP IT UNDER THE CARPET Lauren: I try not to think about it too much and I know that’s probably not the best way to go about it just