Children with Special Health Care Needs: Comparison of the Effects of Home Care Setting, Prescribed Pediatric Extended Care Setting, and Long-Term Care Setting on Child and Family Health Outcomes and Health Care Service Use

Caicedo, Carmen

doi:10.25148/etd.fi13042303

Cited by 3 publications

(3 citation statements)

References 94 publications

(162 reference statements)

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“…Poor caregiver well-being in turn may have a negative impact on the child and the quality of care provided [ 10 ]. Families and households are consequently impacted by having a child with a chronic condition [ 11 ]. Therefore, it is important to determine predictors of caregiver burden in order to identify risk factors and targets for interventions.…”

Section: Introductionmentioning

confidence: 99%

Predictors of Caregiver Burden among Mothers of Children with Chronic Conditions

et al. 2017

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Objective: The complex medical regimens of children and adolescents with chronic conditions can have a significant impact on families and households. Caregivers may experience burden, which can lead to negative health consequences and poor quality of life. The objective of this study was to determine child-related predictors and risk factors for caregiver burden among parents of children with chronic conditions. Methods: We distributed an institutional review board (IRB)-approved, online cross-sectional survey to parents of children who attended the Victory Junction therapeutic camp. Parents provided information on child demographics, disease characteristics, and healthcare utilization. Parents also answered the adapted Zarit Burden Interview, which measured caregiver burden. Children completed scales about self-management and self-efficacy. Linear regression analyses determined how children’s disease characteristics, health utilization, and self-management skills were associated with caregiver burden. Results: We enrolled 150 mother-child dyads. The mean age of child participants was 12.23 years (±2.5), with an age range of 6 to 16 years. It was determined that children’s number of medicines and injections (β = 0.161, p = 0.047), a diagnosis of attention-deficit/hyperactivity disorder (ADHD) in addition to the primary medical condition (β = 0.216, p = 0.008), frequent visits with a primary care provider (PCP) (β = 0.209, p = 0.026) and emergency room (ER) visits (β = 0.197, p = 0.038), and lower child self-efficacy (β = −0.241, p = 0.041) were predictors of increased caregiver burden. Conclusions: We identified risk factors for caregiver burden among mothers. Future studies should explore additional child-related characteristics as they relate to caregiver burden, and should determine if interventions for mothers of children with chronic conditions can lead to positive outcomes.

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Section: Introductionmentioning

confidence: 99%

Predictors of Caregiver Burden among Mothers of Children with Chronic Conditions

et al. 2017

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“…They require health care that includes rehabilitative services, preventative, primary, specialty, emergent, and acute care services (Cohen et al, 2011; Oddy & da Silva Ramos, 2013). Parents must often perform tasks that are the usual purview of health care professionals, including administering medications or oxygen therapy, changing tracheostomy tubes, suctioning airways, passing nasogastric tubes or urinary catheters, giving injections, or providing continuous and sometimes painful therapeutic regimes (Caicedo, 2013).…”

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confidence: 99%

Families With Special Needs Children

Caicedo

2014

J Am Psychiatr Nurses Assoc

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185

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There are 11.2 million children with special health care needs in the United States or one in five households caring for a special needs child. A small group of children who need continuous medical, nursing, therapeutic services that enable them to survive is growing in numbers. This study examined physical health (physical functioning), mental health (emotional, social, and cognitive functioning; communication; and worry), family functioning (daily activities, family relationships), and care burden (caregiver employment, caregiving time, travel time, health-related out-of-pocket expenditures) of parent caregivers for medically complex, medical technology-dependent children. Data were collected once a month for 5 months on 84 parents recruited in South Florida using the Pediatric Quality of Life Family Impact Module. Physically, parents were tired when they woke up: too tired to do the things they liked to do and with little energy for chores or social activities. Mentally, they were frustrated, anxious, and angry; felt helpless and hopeless; had cognitive problems remembering and focusing on tasks; were worried about the child's medications, treatments, side effects; and were anxious about child's future and effect of the child's condition on other family members. Socially, they felt isolated and that people did not understand their family situation; they found it hard to talk with others including physicians and nurses. Average weekly hours of direct care was 33.0 (SD = 30.4 hours); average monthly out-of-pocket expenditures was $348.78 (SD = $623.34). It is essential to assess parents' physical and mental health and functioning and to provide interventions to improve health and functioning for both the parents and the children for whom they are caring.

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“…Children with special healthcare needs (SHCN) encompass a diverse group of individuals who require additional assistance or accommodations due to physical, developmental, behavioral, or emotional conditions (Caicedo, 2013). These conditions may range from genetic disorders, such as Down syndrome or cerebral palsy, to chronic illnesses like asthma or diabetes.…”

Section: Introductionmentioning

confidence: 99%

Optimizing dental screening protocols for children with special healthcare needs: Enhancing access and prevention

Ehizogie Paul Adeghe,

Chioma Anthonia Okolo,

Olumuyiwa Tolulope Ojeyinka

2024

Int. J. Front. Sci. Technol. Res.

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Children with special healthcare needs face significant barriers to accessing dental care, resulting in higher rates of untreated dental disease and poorer oral health outcomes compared to their peers. Optimizing dental screening protocols tailored to the unique needs of this population is crucial to enhancing access to care and preventing dental disease. This paper explores the challenges in accessing dental care for children with special healthcare needs, reviews current screening protocols, and proposes strategies for optimization. The literature review highlights the multifactorial nature of barriers to care, including socioeconomic factors, physical and cognitive limitations, and cultural considerations. Despite existing challenges, success stories and emerging technologies offer promising avenues for improvement. Multidisciplinary collaboration, tailored screening protocols, technology integration, community outreach, and policy advocacy are identified as key strategies for optimization. The proposed strategies are underpinned by the principles of equity, inclusivity, and person-centered care. Implementation plans include pilot programs, professional training, and integration with existing healthcare systems. Evaluation metrics will assess the effectiveness and sustainability of optimized screening protocols. Expected outcomes include increased access to dental care, reduced prevalence and severity of dental disease, improved oral health-related quality of life, and cost-effectiveness. The conclusion emphasizes the importance of ongoing evaluation and adaptation to meet the evolving needs of children with special healthcare needs. This paper calls for concerted efforts from stakeholders across healthcare, education, policy, and advocacy sectors to implement and support the proposed strategies. By optimizing dental screening protocols, we can make significant strides towards enhancing access to care and improving oral health outcomes for children with special healthcare needs.

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Children with Special Health Care Needs: Comparison of the Effects of Home Care Setting, Prescribed Pediatric Extended Care Setting, and Long-Term Care Setting on Child and Family Health Outcomes and Health Care Service Use

Cited by 3 publications

References 94 publications

Predictors of Caregiver Burden among Mothers of Children with Chronic Conditions

Predictors of Caregiver Burden among Mothers of Children with Chronic Conditions

Families With Special Needs Children

Optimizing dental screening protocols for children with special healthcare needs: Enhancing access and prevention

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