Authorship：Lead author,　Corresponding author   Language：English   Publishing type：Research paper (scientific journal)  

BACKGROUND/OBJECTIVES: Increased burdens on caregivers of infants and toddlers significantly affect caregivers' quality of life and health. Although adequate care during infancy contributes to child development and special health care needs affect caregiver burden, the risk factors for and protective factors against increased caregiver burden remain unclear. We aimed to evaluate children's health care needs and required caregiving time and identify factors associated with increased caregiver burden. METHODS: We conducted an online survey of 287 Japanese caregivers who were randomly selected from a web panel and were raising children aged <4 years. The survey comprised a sociodemographic data form, Children with Special Health Care Needs (CSHCN) Screener, caregiving time survey form, and questions on increased burden. Needs and caregiving time were evaluated by dividing the participants into CSHCN and non-CSHCN groups. Related factors were analyzed using increased burden as the dependent variable. The chi-square test, Mann-Whitney U test, and modified Poisson regression were used for data analysis. RESULTS: Among the children of the 287 participating caregivers, 16.4% were identified as CSHCN, while 96.9% had no specific diagnosis. Overall, 38.3% of the CSHCN group met only one of the five CSHCN Screener items. The CSHCN group spent significantly more time providing and arranging/coordinating health care. The non-CSHCN group spent significantly more time providing daily care. After adjusting for covariates, increased caregiver burden was significantly associated with a younger age of the child, more caregiving time required 6 months prior to the survey, and providing care for CSHCN. CONCLUSIONS: To help reduce the burden of childcare on caregivers of infants and young children, children's needs should be identified and generous childcare provided from an early age. Early identification of CSHCN and appropriate support for families may help reduce caregiver burden during early childhood.

DOI： 10.3390/pediatric17030068

Open Access

Web of Science

Scopus

PubMed

Authorship：Lead author,　Corresponding author   Language：English   Publishing type：Research paper (scientific journal)  

AIM: This study evaluated the special healthcare needs of children residing in infant homes, assessed the associated care burden, and identified factors influencing changes and reductions in care burden for these children. METHODS: Data were collected from staff members responsible for each of the 213 infants and toddlers in infant homes. Statistical analyses included the chi-square test, Mann-Whitney U test, analysis of covariance, and Wilcoxon signed-rank test to evaluate changes in care needs, care time, and care burden. Logistic regression analysis was conducted to determine factors associated with reductions in care burden over a 6-month period for children with special healthcare needs who had been in care for at least 6 months. RESULTS: Among the 213 infants, 39.9% had special healthcare needs. The highest proportion of care time was allocated to feeding and lulling these children to sleep-activities requiring significantly more time than those for children without special needs. Over several months, the care burden for children with special needs tended to increase; however, it decreased for 19 (26.0%) of these children over a 6-month period. Multivariate analysis revealed that age (OR = 0.86) and total care hours 6 months earlier (OR = 1.13) were significantly associated with reductions in care burden. CONCLUSIONS: Age and total care hours 6 months earlier were associated with a reduced care burden. When transitioning these children to family care, assessing the type and intensity of care required rather than the duration of care is crucial. Early intensive care may reduce care burden.

DOI： 10.1111/jjns.70012

Open Access

Web of Science

Scopus

PubMed

Language：Japanese   Publisher：Japanese Association for Research in Family Nursing  

This study aimed to elucidate the activities of certified nurse specialists in family health nursing (FCNS) in Japan and visualize their practices to facilitate their inclusion in medical fees using a web-based questionnaire via Google Forms. Responses were obtained from 29 FCNS, with approximately 70% affiliated with hospitals and about 90% working as FCNS in nonexclusive roles. The findings indicated that most FCNS activities extended beyond their affiliated institutions, involving collaboration with other certified nurses and certified nurse specialists across various fields; however, many of these activities were not covered by medical fees. The practice of FCNS involves dynamically and proactively engaging with patients’ families and multidisciplinary teams and understanding and coordinating relationships from an early stage. The results highlight the diverse activities and expertise of FCNS and suggest the need for further research to evaluate outcomes and build evidence related to FCNS practices.

DOI： 10.60320/jarfn.30.0_122

Open Access

Other Link： https://ndlsearch.ndl.go.jp/books/R000000004-I034132339

Authorship：Lead author,　Corresponding author   Language：English   Publishing type：Research paper (scientific journal)  

BACKGROUND: Advances in medical technology have increased the identification of children with special healthcare needs (CSHCN), indicating the need to strengthen care systems. However, existing systematic reviews are outdated, over a decade old, and narrowly focused-primarily on hospital-based comprehensive care programs and family-centered care. This scoping review aimed to organize and integrate existing findings on care and support for CSHCN and their families from the available literature. METHODS: We employed an extensive search in December 2023, utilizing databases such as PubMed, Web of Science, CINAHL, ERIC, and The Cochrane Library. Selected articles were thoroughly reviewed, categorized, and organized by the type of care and support addressed. The findings of the included studies were organized and integrated descriptively. RESULTS: Following a comprehensive search and screening process, 49 articles were selected and categorized into 5 themes: care systems based on hospitals and other specialized institutions, specialized personnel or programs for care coordination/integrated care, support using telehealth technology to enhance and facilitate care, care aimed at reducing the psychological burden on the child and family, and peer and group support emphasizing the role of family and community. Publication years ranged from 1998 to 2023. The studies were conducted in 7 countries, predominantly in the United States, with additional studies from Canada, Australia, the United Kingdom, Japan, India, and Belgium. CONCLUSIONS: This study underscores the importance of establishing effective care systems that ensure continuous and smooth care coordination from multiple perspectives for the well-being of CSHCN and their families. To enhance support systems for the well-being of CSHCN and their families, it is necessary to pursue a multi-faceted approach that facilitates continuous and smooth care coordination from various perspectives.

DOI： 10.1097/MD.0000000000041944

Open Access

Web of Science

Scopus

PubMed

Language：English   Publishing type：Research paper (scientific journal)  

AIM: To reach a consensus on question items for early identification of unmet psychosocial needs of school-aged siblings of children with cancer and blood disease. DESIGN: Modified Delphi method. METHODS: Twenty-three studies were reviewed to extract question items, which were classified into seven categories. A total of 39 question items were selected for this study. The selected question items were carefully considered using the modified Delphi method. The participants were 28 medical staff from a childhood cancer hub hospital and 20 sibling support group staff members. The first round consisted of a questionnaire (n = 48); the second, a focus group interview (n = 8) and the third, another questionnaire (n = 8). The first and third rounds used a 5-point Likert scale. This survey was conducted from July to October 2021. RESULTS: A total of 38, 26, and 24 question items were included in the first, second, and third rounds respectively. A total of 24 question items were extracted using the modified Delphi method to identify siblings' unmet psychosocial needs: relationship with family members, 3; daily life issues, 4; stress, 6; emotions, 3; information, 3; relationships with medical staff, 1 and social and medical resources, 4. Seven categories and 24 question items were confirmed as items for identifying the unmet psychosocial needs of school-aged siblings of children with cancer and blood disease.

DOI： 10.1002/nop2.1958

Open Access

Web of Science

Scopus

PubMed

Authorship：Lead author   Language：Japanese  

Authorship：Lead author,　Corresponding author   Language：Japanese   Publisher：京都 : 日本乳幼児医学・心理学会  

Other Link： https://ndlsearch.ndl.go.jp/books/R000000004-I032802184

Language：Japanese   Publisher：一般社団法人 日本看護研究学会  

DOI： 10.15065/jjsnr.20221019102

CiNii Research

Authorship：Lead author  

Language：Japanese   Publisher：武蔵野 : 日本小児がん看護研究会編集委員会  

Other Link： https://ndlsearch.ndl.go.jp/books/R000000004-I032510573

Authorship：Lead author   Publishing type：Research paper (scientific journal)  

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