Living with the threat of losing a child: Parents' experiences of the transplantation process with a severely ill child who received stem cells from a sibling.

PURPOSE: When a child needs a hematopoietic stem cell transplant, the seriousness of the child's illness is highlighted. The purpose of this study was to explore parents' experiences of the transplantation process when two children in the family are involved, one severely ill child as the recipient and the other as the donor. METHODS: In this qualitative study, interviews were conducted with 18 parents of 13 healthy minor donors after successful stem cell transplants. Qualitative content analysis was used to explore parents' experiences. FINDINGS: The parents described they were living with the threat of losing a child. They lived with an uncertain future as they were confronted with life-changing information. Whether the ill child would survive or not could not be predicted; thus, parents had to endure unpredictability, and to cope with this they chose to focus on positives. Finally, the parents managed family life in the midst of chaos, felt an inadequacy and a perception that the family became a fragmented although close team during hospital stays. They expressed a need for both tangible and emotional support. CONCLUSIONS: When a child needs a stem cell transplant, the parents feel inadequate to their healthy children including the donating child. It is obvious that they experience an uncertain future and struggle to keep the family together amid the chaos. PRACTICE IMPLICATIONS: Considering these results, psychosocial support should be mandatory for parents in connection with pediatric HSCT, to enable a process where parents can prepare for the outcome, whether successful or not.

Demographic and disease-related factors impact bone turnover and vitamin D in children with hemato-oncological diseases.

Children with hemato-oncological diseases may have significant skeletal morbidity, not only during and after treatment but also at the time of diagnosis before cancer treatment. This study was designed to evaluate the vitamin D status and circulating bone metabolic markers and their determinants in children at the time of diagnostic evaluation for hemato-oncological disease. This cross-sectional study included 165 children (91 males, median age 6.9 yr range 0.2-17.7 yr). Of them, 76 patients were diagnosed with extracranial or intracranial solid tumors, 83 with leukemia, and 6 with bone marrow failure. Bone metabolism was assessed by measuring serum 25OHD, PTH, bone alkaline phosphatase, intact N-terminal propeptide of type I procollagen, and C-terminal cross-linked telopeptide of type I collagen. Vitamin D deficiency was found in 30.9% of children. Lower 25OHD levels were associated with older age, lack of vitamin D supplementation, season outside summer, and a country of parental origin located between latitudes -45° and 45°. Children diagnosed with leukemia had lower levels of markers of bone formation and bone resorption than those who had solid tumors or bone marrow failure. In conclusion, vitamin D deficiency was observed in one-third of children with newly diagnosed cancer. Bone turnover markers were decreased in children with leukemia, possibly because of the suppression of osteoblasts and osteoclasts by leukemic cells. The identification of patients with suboptimal vitamin D status and compromised bone remodeling at cancer diagnosis may aid in the development of supportive treatment to reduce the adverse effects of cancer and its treatment.

Is there a choice when a sibling is ill? Experiences of children and adolescents who donated stem cells to a sibling.

PURPOSE: When healthy children/adolescents are potential stem cell donors to a sibling, ethical questions arise due to reduced autonomy and dependency on their family. This study aimed to explore the experiences of children/adolescents in Sweden who donated stem cells to a severely ill sibling. METHOD: Semi-structured interviews were conducted with thirteen donors, aged 6-17 years at the time of the donation, all with surviving siblings. The interviews were transcribed verbatim and analysed using qualitative content analysis. RESULT: The main category in this study was The presumed 'choice' when a sibling is ill. The experience included being Proud without an actual choice, highlights that the donors were proud to contribute, and perceptions of a request without a choice. Focusing on the ill sibling and the outcomes reveals that they were worried and protected the sibling, and downplayed the importance of their own effort. They experienced a Need ofsupport and information, which derived from receiving information without communication about what they really needed to know, but also the importance of support through play and talk. CONCLUSION: The donation involves the young donor in the care, implying an opportunity to bring the family back together. They have no real choice, when their sibling is ill and the lack of information about possible alternatives indicate that there was no option to decline. There is also a need to focus on the experiences of young donors whose siblings died after the transplantation.