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1.
Article in English | MEDLINE | ID: mdl-39008423

ABSTRACT

Purpose: A cancer diagnosis can greatly affect adolescents and young adults (AYAs), especially those in their late teens and early twenties, who might have their special needs. This study aimed to understand the experiences of the AYAs who were diagnosed between 15 and 24 years of age in Japan, thinking about the care guide supporting them, from the time of their cancer diagnosis through the rest of their lives. Methods: Data were collected using semi-structured interviews, which were audio recorded and transcribed verbatim. Qualitative analysis of the transcripts was used to categorize these into themes for comprehensive interpretation. Results: Twenty AYAs participated; they were diagnosed between the ages 15 and 23 and were 19-29 years old at the time of the interview. In total, 14 core categories were identified, consisting of three themes (1) There is a feeling of distance between the cancer and me, (2) I face "my cancer" in my way, and (3) I feel that I would be okay with "my cancer." Conclusions: AYAs had their way of dealing with cancer while experiencing a distant feeling between themselves and the presence of the disease during their cancer journey. Although the process was not simple, they tried to live their lives in their own way, believing that they would be okay. Nurses must respect and understand that AYAs have a process of facing their own cancer with time and watch over AYAs' experiences to appropriately support them to successfully proceed further.

2.
J Hosp Palliat Nurs ; 25(2): E41-E48, 2023 04 01.
Article in English | MEDLINE | ID: mdl-36696227

ABSTRACT

Many nurses experience difficulties in pediatric palliative care practice. The study aimed to describe the current situation and structure of pediatric palliative and end-of-life care nursing practices for children and their families in Japan. The research subjects were nurses working in hospitals; facilities for persons with severe physical, motor, and intellectual disabilities; and home-visit nursing stations. The practice ratio was calculated using a 79-item survey form, and factor analysis was conducted. A total of 113 facilities (acceptance rate: 26.5%) and 777 nurses (response rate: 44.6%) responded. Five items had a "Practicing" ratio of ≥90%. In factor analysis, 7 domains were identified: "preparing to face the time of death with the child and family," "ensuring child-centered care," "managing symptoms with the child and family," "considering and coordinating for the child's peaceful time of death," "understanding and respecting the culture of the child and family," "assessing the child and family as a whole person," and "performing self-reflection on an ethical issue." Nurses' practice of pediatric palliative care differs by practice domain. It is necessary to reflect on the educational programs under development to improve the quality of life of children and their families.


Subject(s)
Nurses , Terminal Care , Humans , Child , Japan , Quality of Life , Palliative Care
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