Browsing by Author "Nafiseh, Amira"

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    "I Bring Her up with Love': Perspectives of Caregivers of Children with Neurodevelopmental Delays in Western Kenya
    (2023-01) Heng, Yi Yan; Nafiseh, Amira; Oyungu, Eren; Ombitsa, Ananda Roselyne; Cherop, Carolyn; McHenry, Megan S.
    Objective: This study aims to understand the challenges and perspectives of caregivers with neurodevelopmental delays (NDD) in rural Kenya. Methods: Semi-structured interviews and the Affiliate Stigma Scale were administered to the primary caregivers of children with NDDs recruited from the communities near Eldoret, Kenya. Constant comparison and triangulation methods were used to inductively develop relevant themes and concepts. Results: Sixteen caregivers participated. Challenges, which included hardships related to safety and supervision, challenging emotions and financial difficulties, were compounded by a lack of social support and community stigma towards these children. However, caregivers still felt deep love for their children, desired acceptance from the community and found sources of strength from faith and religious institutions. Conclusion: The study uncovered crucial insights into the perspectives of caregivers within this population and revealed a paucity of disability awareness and understanding within the community, possibly informing future programmes and intervention policies.
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    "If We Manage Early, We Can Get It Right": A Descriptive Study of Healthcare Workers' Experiences Managing Sepsis at a Kenyan Referral Hospital
    (Springer Nature, 2025-02-14) Srour, Maria; Ali, Shamim; Hodge, Matthew; Kwobah, Charles; McHenry, Megan; Etling, Mary Ann; Nafiseh, Amira; Khan, Babar; Prohaska, Clare C.; Navuluri, Neelima; Medicine, School of Medicine
    Background and objectives: Sepsis and septic shock are conditions of high mortality across the globe. Despite the efforts of the Surviving Sepsis Campaign, improvements in outcomes for patients with sepsis and septic shock have been mostly seen in high-income countries (HICs), leaving low- and middle-income countries (LMICs) to bear most of the global disease burden. This paper utilizes a socio-ecological model to describe the lived experiences of local healthcare workers treating sepsis and septic shock at a large referral hospital in Western Kenya. These perspectives shed light on barriers and strengths in care, gaps in knowledge, and areas of high-yield improvement. Materials and methods: This is a descriptive analysis focused on providers caring for patients with sepsis and septic shock. Twenty-seven interviews with a wide variety of purposively sampled patient-facing and ancillary medical staff were performed. Concurrent thematic analysis took place as interviews were being conducted. The concept presented was inductively and deductively reasoned and analyzed using a socio-ecological framework. We chose to present three levels of influence on the individual provider. Results: We present our results using a socio-ecological model. At the health system level, we found that most patients do not have healthcare coverage, which drives up out-of-pocket expenses for individuals. At the hospital level, capacity limits, particularly personnel shortages and small intensive care unit (ICU) spaces, influence care. At the interdisciplinary level, relationships between providers and other members of the healthcare team can present challenges. Lastly, these system-, hospital-, and interdisciplinary-level challenges make guideline adherence difficult and not always feasible for individual providers. Conclusions: To our knowledge, this is the first study to give voice to local providers treating patients with sepsis at a referral center in Western Kenya. By presenting findings in the socio-ecological model, we are able to organize potential interventions for the improvement of care at various levels. We found high-yield areas for improving care including establishing clear protocols for task assignments and communication, increasing the number of trained personnel both in the general wards and in the ICU, and, on a broader scale, advocating for expanded healthcare coverage for all Kenyans. This work provides a framework for further investigation into elements of sepsis care and the creation of locally relevant treatment guidelines in sub-Saharan Africa and across LMICs.
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    Mixed Methods Analysis of Caregiver Satisfaction With the Early Autism Evaluation Hub System
    (Sage, 2024-12-12) Martin, Ann Marie; Huskins, Jordan; Paxton, Angela; Nafiseh, Amira; Ciccarelli, Mary R.; Keehn, Brandon; McNally Keehn, Rebecca; Pediatrics, School of Medicine
    Community-based methods for autism evaluation may be one solution for ameliorating delays in diagnosis, which are exacerbated for children from minoritized backgrounds. However, limited research has examined caregiver satisfaction with community-based models of autism evaluation. Thus, our objective was to use a mixed-methods approach to investigate caregiver satisfaction with their child's autism evaluation conducted across a statewide system of primary care autism diagnosis. Results indicated overall high satisfaction and no significant differences were found between satisfaction total scores nor caregiver stress and any child/family demographic variables. Satisfaction and stress were also not related to autism diagnostic outcome, clinician diagnostic certainty, or diagnostic accuracy. Qualitative suggestions for evaluation improvement include more thorough explanation of diagnosis and service recommendations. Overall, our findings indicate high caregiver satisfaction with multiple dimensions of community-based autism evaluation in the primary care setting, suggesting this may be a feasible and sustainable model that caregivers find acceptable.