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Objectives Due to their medical and technology dependence, families of children with medical complexity (CMC) have significant costs associated with care. Financial impact on families in general have been described, but detailed exploration of expenses in specific categories has not been systematically explored. Our objective was to describe out-of-pocket (OOP) expenses incurred by caregivers of CMC and to determine factors associated with increased expenditures. Methods This is a secondary observational analysis of data primary caregiver-reported OOP expenses as part of a randomized control trial conducted in Ontario, Canada. Caregivers completed questionnaires reporting OOP costs. Descriptive statistics were utilized to report OOP expenses and a linear regression model was conducted. Results 107 primary caregivers of CMC were included. The median (IQR) age of participants was 34.5 years (30.5 to 40.5) and 83.2% identified as the mother. The majority were married or common-law (86.9%) and 50.5% were employed. The participant's children [median (IQR) age 4.5 (2.2 to 9.7); 57.9% male] most commonly had a neurological/neuromuscular primary diagnosis (46.1%) and 88% utilized medical technology. Total OOP expenses were $8,639 CDN annually (IQR = $4,661 to $31,326) with substantial expenses related to childcare/homemaking, travel to appointments, hospitalizations, and device costs. No factors associated with greater likelihood of OOP expenses were identified. A P-value of <0.05 was considered significant. Conclusion Caregivers of CMC incur significant OOP expenses related to the care of their children resulting in financial burden. Future exploration of the financial impact on caregiver productivity, employment, and identification of resources to mitigate OOP expenses will be important for this patient population. [ABSTRACT FROM AUTHOR]

This study explored severe malaria-related disability in children from the perspectives of their caregivers. The interpretive description qualitative approach was employed. The participants were selected using the purposive sampling technique considering the child's history of severe malaria, age (0–10 years), and location (urban/rural). Data were collected through face-to-face interviews with sixteen caregivers. Reflexive thematic data analysis was utilized. Through prolonged engagement, reflective journaling, an audit trail, and co-authors' review, trustworthiness was enhanced. The study generated five themes from the interviews: mitigators of disability, contributors of disability, impact on body function, impact on activities and participation, and uncertainties about future well-being. The findings revealed previously unstudied social components of disability and environmental factors. Furthermore, the research uncovered health-related quality of life aspects that are out of the scope of the current comprehensive disability framework. The study contributes to a deeper understanding of severe malaria-related disability in children from the biopsychosocial perspective. The findings could help policymakers, researchers, and clinicians who want to design rehabilitation interventions for the affected children or examine the components of disability on a large scale using quantitative methods. Various contextual factors interacted with severe malaria and influenced functioning either as facilitators or barriers, implying disability related to malaria can be prevented or created. The long-term impacts of severe malaria are not limited to functioning and disability but also affect the health-related quality of life of children who survive severe malaria. Rehabilitation professionals should consider applying comprehensive functioning and disability frameworks such as the ICF when designing (or applying) screening tools, planning interventions, and evaluating the outcomes of intervention for children with severe malaria-related disability. Rehabilitation interventions for children with severe malaria-related disability should consider patient– or caregiver–reported outcomes (components of disability). [ABSTRACT FROM AUTHOR]

Introduction: Severe malaria often results in childhood disability. The prevalence of disability related to severe malaria is significant and is estimated to affect up to 53% of severe malaria survivors. In contrast, information is sparse about how healthcare providers in Africa think about or provide rehabilitation support in acute and post-acute phases respectively. Understanding the perceptions and behaviors of healthcare providers treating malaria could help inform malaria-related disability research, policy, and practice, aimed at the providers themselves. This study explored the perceptions and behaviors of healthcare providers towards rehabilitation for children with severe malaria-related disability. The Theoretical Domains Framework was used to describe the findings relative to wider literature on health provider behavior change. Methods: A qualitative descriptive approach was used to interview thirteen healthcare providers recruited purposively based on their clinical professions, roles, and settings. Data were analyzed using directed content analysis. We decided on the most prominent theoretical domains considering the frequency of specific perceptions and behaviors across the participants, the frequency of perceptions and behaviors in each domain, and evidence of strong perceptions and behaviors. Results: Nine out of fourteen theoretical domains were identified. These domains were: Beliefs about consequences, environmental context and resources, goals, knowledge, skills, optimism, reinforcement, social influences, and social or professional role and identity. Healthcare providers' beliefs about their roles in screening for disability or referring to rehabilitation were less positive. Conclusions: The findings of this study suggest the need for interventions to support healthcare providers in acute phases (prevention and control of severe malaria) and post-acute phases (disability screening, referral, and rehabilitation care). Recommended interventions should focus on developing clinical guidelines, training clinicians, addressing institutional factors, and modifying external social influences such as socio-cultural factors. [ABSTRACT FROM AUTHOR]

Disability is a consequence of severe malaria for a significant proportion of African children. This scoping review aims to describe the impact of severe malaria on African children according to current literature using an international biopsychical classification and framework of disability and functioning. MEDLINE, EMBASE, Global Health, and CINHAL databases were searched for original research conducted on African children aged 0–18 using terms related to severe malaria and components of disability. Independent and dependent variables were extracted and classified using the World Health Organization's International Classification of Functioning, Disability, and Health-Children and Youth version (ICF-CY) using standardized coding methods. Seventy-two percent of the measured variables in the 34 included studies were coded as "body functions," (i.e., impairments), such as mental, neuromusculoskeletal, movement, and sensory functions, and 23.3% of variables were coded as "activities and participation" (i.e., activity limitations/participation restrictions), such as difficulties with general tasks and demands, communication, mobility, interpersonal interactions, and relationships. "Environment" variables such as family support, health access, education, or societal attitudes were not found in the included studies. Existing peer-reviewed quantitative research of severe malaria-related disability is focused on neurological sequelae, with less research about activity limitations and participation restrictions. Promoting the use of a comprehensive biopsychosocial disability framework and classification system for severe malaria will provide a framework that other researchers, policymakers, and rehabilitation professionals can consider when looking at the best ways to support outcomes for children with severe malaria. Using a framework of the ICF-CY, we have highlighted the need for better research into child functioning outcomes in severe malaria research, especially within the domain of child participation. Policymakers should be encouraged to support better holistic evaluation, support, and rehabilitation of children who have had severe malaria. [ABSTRACT FROM AUTHOR]

Explore methods used in peer-reviewed literature for obtaining self-expression of well-being information from children with severe motor and communication impairment (SMCI). A comprehensive search was conducted on 22 August 2019 through academic databases: CINAHL; Embase; MEDLINE; PsycINFO; InSpec; Compendex. Search strategies were informed by keywords under the following areas: (1) population: children with SMCI, (2) assessment methods: alternative to natural speech, paper and pencil report or standardized keyboard use (e.g., eye gaze) and (3) target information: well-being (e.g., quality of life). Studies were excluded if they focused on individuals over 25-years old, exclusively autism or typically developing children. Non-duplicate studies of 10,986 were screened; 49 studies met inclusion criteria. Most studies used high-tech methods of self-expression in a single context (n = 17). Familiar partners play a significant role in self-expression; 18 studies required a familiar partner for children with SMCI to self-express. Thirty-five studies involved children self-expressing to solely adults, in comparison to 14 studies which involved peers. Findings highlight the advancement of high-tech communication devices restricted to application in single contexts. Familiar partner knowledge of children with SMCI has the potential to be shared with others (e.g., respite care providers), enhancing both caregiver and child well-being. Future research that would enhance the literature could explore the assessment of emotional well-being for application in various contexts using multimodal methods. Opportunities for children with SMCI to express their emotional well-being can further influence the understanding and enhancement of participation, social connections, and experiences. Use of lower tech methods of self-expression to obtain information directly from children with severe motor and communication impairment (SMCI) remain more feasible in home and school contexts. By utilizing familiar partners' experiences and knowledge of the child, respite care providers, novel support workers, and others involved in the lives of children with SMCI can become further informed. Current high-tech methods for obtaining the emotional expressions of children with SMCI may benefit from incorporating multimodal approaches including lower tech methods, to be feasibly applied in real world contexts where well-being takes place. Further research on this topic is imperative to enable children with SMCI to self-express their emotional well-being which can enhance participation, activities, social connections, and experiences. [ABSTRACT FROM AUTHOR]