Real-world psychosocial impact among patients with juvenile idiopathic arthritis and families in Spain DOI Creative Commons

Inmaculada Calvo Penadés,

E. Moreno, Joan Calzada‐Hernández

и другие.

Pediatric Rheumatology, Год журнала: 2024, Номер 22(1)

Опубликована: Ноя. 26, 2024

To assess the psychosocial impact of moderate-severe juvenile idiopathic arthritis (JIA) on patients and their families, among those who had been treated with at least one anti-tumor necrosis factor (anti-TNF-α), according to routine clinical practice in Spain. A 24-month observational, multicentric, cross-sectional retrospective study was performed. Children diagnosed JIA were enrolled three tertiary-care Spanish hospitals. The included children biologic disease-modifying antirheumatic drugs (bDMARD) participated a previous study, ITACA, continued follow-up these pediatric rheumatology units. Patient health-related quality life (HRQoL) assessed using Pediatric Quality Life Inventory (PedsQL™). Caregivers completed an interview gather information about school attendance, children's participation social activities, its jobs perceived support. descriptive statistical analysis all variables Mann–Whitney-U test or Kruskall-Wallis H used compare quantitative Fisher's exact tests for qualitative variables. Tests two-tailed significance level 5%. data analyzed SPSS V18.0 software. One hundred seven included. Overall, inactive disease low activity JADAS-71 score very functional disability CHAQ score. Up 94.4% receiving drug treatment, mainly bDMARD monotherapy (84.5%). Based PedsQL, parents referred high HRQoL. School Functioning PedsQL domain achieved lowest Work due child´s greater mothers than fathers. understanding lower family friends' environments. Most HRQoL controlled activity, despite having negative some them functioning. Children's seems involve work impacts fathers affected by JIA.

Язык: Английский

Measuring adjustment of siblings of children with disabilities: psychometric properties across translations, age groups and informants DOI Creative Commons
Linda K. M. Veerman, Stian Orm, Krister W. Fjermestad

и другие.

International Journal of Developmental Disabilities, Год журнала: 2024, Номер 71(1), С. 4 - 17

Опубликована: Окт. 9, 2024

The Negative Adjustment Scale (NAS) is used to measure adjustment having a sibling with disability. However, several adaptations the scale have been made, and implementation varies across studies countries. This study examined psychometric properties different versions provides directions for future use development of NAS. sample comprised 400 siblings aged 6-16 years old from Norway, Netherlands Belgium. Measurement invariance was assessed age groups (8-11 vs. 12-16 years) translations (Norwegian Dutch), using multi-group confirmatory factor analysis. parent version were among 102 parents Dutch sample. internal consistency NAS acceptable good in all versions. A single model held translations, although higher order not supported. child report did significantly correlate. generally has sufficient properties. these vary groups, informants, causing be less appropriate comparisons between groups. Further adaptation or developing new children disabilities, advised.

Язык: Английский

Процитировано

4

Education on healthy living culture to increase children's awareness from an early age DOI Creative Commons

Trimaya Cahya Mulat,

Muh Ihsan Kamaruddin,

Nordianiwati Nordianiwati

и другие.

Deleted Journal, Год журнала: 2025, Номер 2(1), С. 25 - 31

Опубликована: Янв. 20, 2025

A healthy lifestyle from an early age is important foundation to support children's growth and development prevent various diseases in the future. This Community Service Program aims provide education about living culture children, increase their awareness of importance maintaining physical mental health. activity carried out through interactive fun approaches, such as educational games, picture stories, simulations practices, including handwashing habits, a balanced diet, activity, clean environment. The method used involves active participation children mentoring parents or teachers ensure sustainability practices taught. evaluation was by measuring improvement understanding pre-test post-test well direct observation changes behavior. results this program show significant knowledge culture. expected be model that can replicated communities create healthier more productive generation.

Язык: Английский

Процитировано

0

Psychosocial Functioning for Preschool‐Aged Siblings of Children With Chronic Disorders: A Scoping Review DOI Creative Commons
Caitlin M. Prentice, Krister W. Fjermestad, Yngvild B. Haukeland

и другие.

Child Care Health and Development, Год журнала: 2025, Номер 51(2)

Опубликована: Фев. 18, 2025

ABSTRACT Background School‐aged siblings of children with chronic disorders, including somatic, neurodevelopmental and psychological diagnoses, are at a small but significant risk experiencing psychosocial difficulties. It is unclear whether this the case for such when they preschool age. Objective This scoping review examined research describing challenges adaptation among preschool‐aged who have sibling disorder, interventions aimed to serve population. Design We searched online databases peer‐reviewed studies published between 1998 2024 identified 18 that reported functioning as states, mental health variables descriptions experiences 3‐ 6‐year‐olds were somatic illness, illness or rare genetic disorder. Results Of included, 15 related autistic children, 12 these study development autism in infants. Only two intervention identified, had very samples maximum three participants 6‐year‐old age range. Conclusions across included suggest may be an increased difficulties, it was difficult draw definitive conclusions due large proportion heterogeneity types represented. Future should focus on target disorders beyond autism.

Язык: Английский

Процитировано

0

Next steps in the development of a sibling adjustment scale: reply to Supianto DOI Creative Commons
Linda K. M. Veerman, Stian Orm, Krister W. Fjermestad

и другие.

International Journal of Developmental Disabilities, Год журнала: 2025, Номер 71(2), С. 205 - 207

Опубликована: Фев. 17, 2025

Язык: Английский

Процитировано

0

Disorder Type and Severity as Predictors of Mental Health in Siblings of Children with Chronic Disorders DOI Creative Commons
Trude Fredriksen, Stian Orm, Caitlin M. Prentice

и другие.

Journal of Autism and Developmental Disorders, Год журнала: 2025, Номер unknown

Опубликована: Фев. 25, 2025

Abstract Siblings of children with chronic disorders are at risk developing mental health problems. Studies inconclusive about whether sibling is best predicted by the specific diagnoses child disorder or transdiagnostic factors. The aims present study were (1) to examine if health, and (2) severity in health. Baseline data from a randomized controlled trial used. (aged 8 – 16 years) their parents recruited eight municipality hospital clinics (N = 288). placed ICD-10 diagnostic categories based on combined parent report clinical records. Regression analyses most frequent primary (ADHD, Asperger syndrome, autism, down rare disorders) measure as predictors run. Father-reported sibling-reported internalizing problems father-reported externalizing siblings. Mother-reported mother-reported No single diagnosis Disorder does an extent predict whereas do not. may be used identify siblings and/or need interventions. Fathers should included assessment care for reports seem better than mothers.

Язык: Английский

Процитировано

0

Re‐Determining My Position: Experiences of Adolescent Siblings of Pediatric Cancer Survivors DOI Creative Commons
Sunhee Lee, Dasuel Lee

Nursing and Health Sciences, Год журнала: 2025, Номер 27(1)

Опубликована: Фев. 26, 2025

Pediatric cancer diagnoses disrupt not only patients and their parents' lives, but also siblings' lives functioning. The purpose of this study was to investigate the lived adolescent experience within family after a sibling diagnosed with pediatric cancer. Eight siblings survivors participated in descriptive qualitative study. In-depth interviews analytic method were used. semi-structured question consisted "experiences when sick treatment," "the difficulties faced as child," causes stress how relieve relationship sibling." Three themes nine subthemes developed from data. three comprised "worried about family," "feeling excluded," "becoming supporter for family." findings indicated that adolescents tended worry feeling exclusion, became family. Healthcare providers need suggest parents provide emotional support children remaining at home express gratitude healthy who are overcoming difficult situation.

Язык: Английский

Процитировано

0

Well-Being and Mental Health of Siblings of Children with Intellectual Disability: a Longitudinal Twin-Family Study DOI Creative Commons
Aline Honingh, Linda K. M. Veerman, Meike Bartels

и другие.

Journal of Developmental and Physical Disabilities, Год журнала: 2025, Номер unknown

Опубликована: Март 21, 2025

Язык: Английский

Процитировано

0

Supporting siblings during the critical illness hospitalization of a child: learning from experience DOI Creative Commons
Karen Dryden‐Palmer,

Alexis Shinewald,

Kimberly O’Leary

и другие.

Frontiers in Pediatrics, Год журнала: 2024, Номер 12

Опубликована: Авг. 26, 2024

Introduction Childhood critical illness impacts the entire family of critically ill patient. Disruptions to usual rhythms and routines, established relationships, physical relocations or shifts in caregivers, uncertainty about patient's well-being can have significant on siblings other connected children family. Promoting facilitating interactions engaging younger members hospital experience been shown reduce patient anxiety, enhance adaptation, improve child outcomes. The care team implement evidence-informed approaches address mitigate challenges for families provide developmentally aligned support impacted siblings. Aim This conceptual paper describes potential a hospitalization siblings, supporting practical interventions drawn from synthesis current literature author's practice caring their families. Data sources A traditional review narrative analysis moderated by authors supported lived experience. Conclusions There is range young Providing consistent, transparent, supportive child, sibling, whole family-centered outcomes

Язык: Английский

Процитировано

1

Translational research – The perspectives of children and adolescents about the challenges of coping and adaptation to chronic conditions DOI
Becky J. Christian

Journal of Pediatric Nursing, Год журнала: 2024, Номер 77, С. 249 - 251

Опубликована: Июнь 1, 2024

Язык: Английский

Процитировано

0

Real-world psychosocial impact among patients with juvenile idiopathic arthritis and families in Spain DOI Creative Commons

Inmaculada Calvo Penadés,

E. Moreno, Joan Calzada‐Hernández

и другие.

Pediatric Rheumatology, Год журнала: 2024, Номер 22(1)

Опубликована: Ноя. 26, 2024

To assess the psychosocial impact of moderate-severe juvenile idiopathic arthritis (JIA) on patients and their families, among those who had been treated with at least one anti-tumor necrosis factor (anti-TNF-α), according to routine clinical practice in Spain. A 24-month observational, multicentric, cross-sectional retrospective study was performed. Children diagnosed JIA were enrolled three tertiary-care Spanish hospitals. The included children biologic disease-modifying antirheumatic drugs (bDMARD) participated a previous study, ITACA, continued follow-up these pediatric rheumatology units. Patient health-related quality life (HRQoL) assessed using Pediatric Quality Life Inventory (PedsQL™). Caregivers completed an interview gather information about school attendance, children's participation social activities, its jobs perceived support. descriptive statistical analysis all variables Mann–Whitney-U test or Kruskall-Wallis H used compare quantitative Fisher's exact tests for qualitative variables. Tests two-tailed significance level 5%. data analyzed SPSS V18.0 software. One hundred seven included. Overall, inactive disease low activity JADAS-71 score very functional disability CHAQ score. Up 94.4% receiving drug treatment, mainly bDMARD monotherapy (84.5%). Based PedsQL, parents referred high HRQoL. School Functioning PedsQL domain achieved lowest Work due child´s greater mothers than fathers. understanding lower family friends' environments. Most HRQoL controlled activity, despite having negative some them functioning. Children's seems involve work impacts fathers affected by JIA.

Язык: Английский

Процитировано

0