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Table 5 Impact of relationships on patients and caregiver: most commonly highlighted issues

From: A qualitative investigation into the impact of hemophagocytic lymphohistiocytosis on children and their caregivers

Relationship and issue highlighted Impact on the patient Impact on the caregiver
Patient and caregiver
Strong relationship “Yeah, he’s still close and we’re actually going to see them Saturday, ‘cause he lives in [town name]. But yeah, very close” “It’s, kind of, you know, it’s probably, you know, created, like, a special bond”
Effect of HLH “I think it just heightened the relationships that we already had, both for good and for bad” “I felt like I never really got to enjoy motherhood. She was my first child, you know, I never really developed that normal mother/child relationship. It was, a lot was a sick child/mother relationship…”
Effect of treatment “When he—we first got admitted, all he did was cry, because he kept saying Daddy and his brother. He wants his brother and his dad and at that time, they told us as much as possible, no siblings under 12 can come to visit. So, physical therapists would come and try to play with him, but no, he was just lying on the bed with me” “Cause he’s slapped me at some point. He kicked me. He said bad words to me…And then when I said to the doctor that he’s really, his mood is so low, she said, ‘This is steroids, believe me, they are nasty stuff. They make your child be a naughtier child, if you know what I mean? He is not himself’”
Other children
Unable to care for siblings NA “It was just, I’d take the kids to school, I’d come home, but I was really like worried about [child with HLH] and that, so my head wasn’t into looking after the kids, ‘cause I couldn’t…”
Negative impact on siblings “Really bad ‘cause they wasn’t allowed up the hospital, the kids … You’d only seen her for four weeks, hadn’t you? … and then she was took into hospital … She went into hospital on the [date] and never come out until [month], so they never seen her for like, over seven months” “Whereas [2nd child], yeah, he was—you know, he—it was tough for him. It was tough when—even when he came back to school, we had a little bit of a problems behavior, problems with him and, you know, he was just, you know—he just wanted his family back, you know. He’s used to the full house and, you know, and constant activity and just life wasn’t as it was before. So, he, no, he didn’t take it well for a little while”
Positive impact on siblings: caring and supportive “She was there … holding her hand. They would snuggle up in bed when [Eldest child] wasn’t feeling well and watch movies. So, it was really all about family for us, 100%” “So, I had to leave them behind and then, you know, my husband, at the time, stayed with them. But because he worked a lot during the day, she was the one that became responsible, you know, making sure that the seven-year-old would, you know, take a bath, eat, you know, get ready for school, do homework with him, so…”
Caregiver and partner
Support NA “Oh, it was so bad. I mean, I was, like, crying every day and again, my husband was the one who was, I would say, the strong one for us, because I would just be crying, and he would be the one telling me, ‘You know, he got through this before, we’re going to get through it again’”
Strain NA “I don’t think I could bond with anyone. I just—especially like, my ex-partner, we, sort of like, drifted away. We was just concentrating on the kids and on [child with HLH] and our relationship had basically come to an end”
Friendships
Lost through not understanding “Her friends did not really keep up with her … And I don’t know if they—you know, her good friends just—they didn’t know how to handle her being so sick or what the problem, what the deal was” “I lost all my friends. I didn’t have no social life at all. It was just revolved around [child with HLH] and trying to look after the kids and cope with what was going on”
  1. HLH, hemophagocytic lymphohistiocytosis; NA, not applicable
  2. Note that the words in brackets have been added either to preserve anonymity (following removal of possible identifying information) or for clarity and are not part of the original quote