Financial toxicity among individuals with spina bifida and their families: A qualitative study and conceptual model

Aksenov, Leonid; Fairchild, Rebecca; Hobbs, Kevin T.; Tejwani, Rohit; Wiener, John S.; Routh, Jonathan C.

doi:10.1016/j.jpurol.2022.03.002

Cited by 10 publications

(5 citation statements)

References 23 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…Some families reported being unable to afford disability-related expenses, indicating that participants who had no, or little out-of-pocket costs may still be experiencing financial hardship. Studies in oncology and paediatric disability populations have identified that cost-prohibitive behaviours and financial hardship can adversely affect patient health, resulting in poorer clinical outcomes and a decreased quality of life [ 32 – 34 ]. Financial hardship has also been positively correlated with caregiver burden, detrimentally affecting psychological wellbeing as described by participants in the current study [ 8 , 33 , 34 ].…”

Section: Discussionmentioning

confidence: 99%

“…Studies in oncology and paediatric disability populations have identified that cost-prohibitive behaviours and financial hardship can adversely affect patient health, resulting in poorer clinical outcomes and a decreased quality of life [32][33][34]. Financial hardship has also been positively correlated with caregiver burden, detrimentally affecting psychological wellbeing as described by participants in the current study [8,33,34]. This highlights the need for clinicians to initiate cost-transparent discussions with families when planning assessments and interventions, tailoring their discussions to families' circumstances, and identifying avenues for social support, such as referral to a social needs' navigator [35].…”

Section: Plos Onementioning

confidence: 99%

See 1 more Smart Citation

Out-of-pocket costs for families and people living with cerebral palsy in Australia

Henry,

Webb,

Galea

et al. 2023

PLoS ONE

View full text Add to dashboard Cite

The most recent cost estimates of cerebral palsy (CP) in Australia did not include out-of-pocket costs for families. This study aimed to: 1) describe and estimate out-of-pocket costs for people with CP and their families by age and gross motor function classification system (GMFCS) level; 2) measure financial distress. A cross-sectional quantitative survey design was used with qualitative approaches to analyse open-ended questions. A CP-specific out-of-pocket costs survey was co-designed with people with lived experience. Adults with CP and carers were recruited from Australian population-based CP Registers and via social media. Sociodemographic variables were analysed descriptively and median (IQR) expenses for health, assistive technology, personal care, housing, occupation, transport, leisure, respite and holidays, by age (0–6; 7–17; 18 years +) and gross motor function [GMFCS level I-II vs III-V] were calculated. The In Charge Financial Distress/Financial Wellbeing Scale measured financial distress. Regression analyses were conducted to investigate costs and financial distress. Additional out-of-pocket costs itemised in open-ended questions were charted. Comments were thematically analysed using the framework approach. 271 surveys were completed for children 0–6 years (n = 47), children/adolescents 7–17 years (n = 124) and adults (n = 100). 94% of participants had out-of-pocket costs associated with CP, with an overall annual median of $4,460 Australian dollars (IQR $11,955). After controlling for income, private insurance and disability funding, the GMFCS III-V group had costs two times higher than the GMFCS I-II group (2.01; 95% CI 1.15–3.51). Age was not significantly associated with costs. 36% of participants had high to overwhelming financial distress; this was not associated with age or GMFCS level after controlling for financial factors. Families had several additional disability costs. Open-ended responses revealed experiences of financial concern were influenced by funding scheme experiences, reduced income, uncertainty, access to support networks and an inability to afford CP-related costs. Cost estimates and financial distress indicators should inform policy, funding and clinical decisions when planning interventions to support people with CP and their families.

show abstract

Section: Discussionmentioning

confidence: 99%

Section: Plos Onementioning

confidence: 99%

Out-of-pocket costs for families and people living with cerebral palsy in Australia

Henry,

Webb,

Galea

et al. 2023

PLoS ONE

View full text Add to dashboard Cite

show abstract

“…Este conjunto de actividades está organizado por las instituciones responsables de la gestión de los activos financieros de una organización, centrándose en sus activos y pasivos, las formas en que puede producir ingresos, las formas en que utiliza sus recursos para producir bienes y servicios, y cómo comparte estos bienes y servicios con la sociedad. (Aksenov et al, 2022;Almashaqbeh, Shaari, y Abdul-Jabbar, 2019) Por tanto, se plantea la hipótesis teórica: La transformación digital es una externalidad a las organizaciones financieras, propia de la industria 4.0, que impulsa el cambio organizacional como forma de adaptación a las ventajas y retos que conlleva esta transformación, la velocidad con la que se da este cambio conlleva a las organizaciones financieras a un proceso de adaptación acelerado y fuerte en métodos, productos y servicios para los clientes internos y externos, si esta adaptación no se da las organizaciones perecen en un mercado altamente competitivo como es el financiero local e internacional, no solo innovando, sino y ante todo, ofreciendo a los clientes seguridad y confianza en estos cambios, pero implica una reconfiguración organizacional, funcional y orgánica de las empresas que no siempre se logra liderar y comprender.…”

Section: Originalunclassified

Algunos Indicadores de Desempeño de Empresas Financieras que han Implementado Proceso de Transformación Digital en Honduras entre 2018-2022

Durón Esquivel,

Torres Vindas

2023

HITOS

View full text Add to dashboard Cite

OBJETIVO: Determinar el impacto en el desempeño de las empresas financieras hondureñas entre 2018-2022 debido al cambio organizacional devenido de transformación digital. MATERIALES y MÉTODO: Se realizó un estudio cuantitativo, no experimental, longitudinal, con alcance correlacional-causal y para el análisis empírico se utilizaron modelos de ecuaciones estructurales (PLS-SEM). Los datos se obtuvieron de los estados financieros y los reportes gerenciales de un banco de Honduras para el periodo 2018-2019. El modelo se basa en la relación causal de cuatro hipótesis RESULTADOS: Se puede inferir que en las entidades financieras la gestión del cambio organizacional planificado tiene un impacto positivo y significativo en el desempeño total observado en un período de tiempo; que se ve reforzado de forma positiva y significativa mediante los ajustes gerenciales emergentes, que se toman con base en la evidencia disponible; sumando las trasformaciones digitales que permiten gerenciar de una forma eficiente y eficaz a dichas organizaciones. CONCLUSIONES: El modelo predictivo de esta investigación, nos señala que el éxito en el desempeño de una entidad financiera se fundamenta en tres indicadores causales: la planificación del cambio organizacional, la implementación de transformaciones digitales y la capacidad de los gerentes para realizar ajustes organizacionales según el desempeño observado.

show abstract

“…The major cost is associated with inpatient care, treatment at initial diagnosis, and comorbidities, in addition to caregiver time costs (Yi et al, 2011). The lifelong multispecialty care and associated cost can deter people from accessing care, resulting in poor clinical outcomes (Aksenov et al, 2022).…”

Section: Mobility Issuesmentioning

confidence: 99%

Needs of Parents of Children With Spina Bifida

Joseph¹

2022

Journal of Pediatric Surgical Nursing

View full text Add to dashboard Cite

Spina bifida (SB) is a birth defect involving the neural tube of the spine. The severity of the condition depends on the extent of the defect. The most severe cases of SB are debilitating and can significantly affect the quality of life of babies born with the defect.Complications of SB can include mobility issues, orthopedic abnormalities, elimination impairments, infections, cognitive delays, and frequent hospitalizations, and these can span the lifetime of the child. The complications and needs associated with SB become very specific as the child reaches adulthood. According to the Centers for Disease Control and Prevention, approximately one in every 2,758 babies born annually in the United States are diagnosed with SB. Learning that a child will be born with a birth defect can be devastating for parents. Several decisions need to be made at birth and as the child grows. Many parents facing such news are overwhelmed and experience a range of emotions. The needs of parents caring for children with SB will vary based on their understanding of the disease process, ability to access resources, availability of a support system, and the capacity to cope with the challenges that arise when caring for a child born with this condition. Nurses must be diligent in exploring the needs of this parent population. This article is intended to raise awareness among nurses regarding parental needs so that they can support and assist parents in developing more effective ways to navigate through their journey.

show abstract

Financial toxicity among individuals with spina bifida and their families: A qualitative study and conceptual model

Cited by 10 publications

References 23 publications

Out-of-pocket costs for families and people living with cerebral palsy in Australia

Out-of-pocket costs for families and people living with cerebral palsy in Australia

Algunos Indicadores de Desempeño de Empresas Financieras que han Implementado Proceso de Transformación Digital en Honduras entre 2018-2022

Needs of Parents of Children With Spina Bifida

Contact Info

Product

Resources

About