Cancer nursing
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There is recognition that teenagers and young adults with cancer merit age-appropriate specialist care. However, outcomes associated with such specialist care are not defined. Patient experience and patient-reported outcomes such as quality of life are gaining importance. Nevertheless, there is a lack of theoretical basis and patient involvement in experience surveys for young people. ⋯ Young people must be kept at the center of interactions in recognition of their stated needs of engagement, of individually tailored information and support unproxied by parents/family. Age-appropriate information and support services that help young people deal with the impact of cancer on daily life and life after cancer must be made available. If we are to develop services that meet need, patient experience surveys must be influenced by patient involvement. Young people can be successfully involved in planning research relevant to their experience.
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The Pediatric Patient-Reported Outcomes Measurement Information System (PROMIS) measures were developed using modern measurement theory and tested in a variety of settings to assess the quality of life, function, and symptoms of children and adolescents experiencing a chronic illness and its treatment. Developed in English, this set of measures had not been translated into Chinese. ⋯ The C-Ped-PROMIS is available for psychometric validation. Future work will be directed at translating the rest of the item banks, calibrating them and creating a Chinese final version of the short forms.
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Multicenter Study
Measuring vincristine-induced peripheral neuropathy in children with acute lymphoblastic leukemia.
Vincristine-induced peripheral neuropathy (VIPN) is difficult to quantify in children. ⋯ The TNS-PV may be a useful tool for assessing vincristine toxicity in children with acute lymphoblastic leukemia.
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Survivors of childhood cancer are a growing population in society. These young people have a high risk of developing chronic health problems with a potential strong impact on their lives. How a childhood cancer experience affects survivors in adolescence has been studied to a limited extent; an increased understanding of this young group is needed to improve follow-up care. ⋯ Follow-up care is needed that can identify those young survivors of childhood cancer having trouble with daily life and offer them support to strengthen their resources in managing difficulties in relation to having had cancer.
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Coping with grief after a child's death is a complex and dynamic process. The Two-Track Model of Bereavement, which served as the theoretical framework for this study, examines biopsychosocial reactions to bereavement (track I) and attachment to the deceased (track II). ⋯ Training programs for nurses need to be developed to help nurses be sensitive to maternal loss and grief and to incorporate the bereaved mother's relationship with her deceased child into interventions.