The Experience of Latina Mothers of Children and Youth With Special Health Care Needs: A Qualitative Study

Brodie, Nicola; Bernstein, Bruce; McNesby, Francis X.; Turchi, Renee M.

doi:10.1177/2333794x19851390

Cited by 7 publications

(8 citation statements)

References 26 publications

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“…74 Understanding experiences and needs of vulnerable families experiencing challenges with social determinants of health, including low income and LEP, is necessary to ensure quality and culturally effective care within a medical home. 34,37-39,51,75 Additional research is needed to identify the most effective training techniques for CWT caregivers with LEP including effective provision of translation services. 35 Video interpretation 55 and telehealth 58 may be useful tools for in-hospital training and addressing postdischarge needs of families of CWT with LEP.…”

Section: Discussionmentioning

confidence: 99%

“…3,19,35 Studies addressing needs and experiences of caregivers of CMC, especially CWT, from vulnerable populations including those with LEP are limited but support the medical home approach. 34,[36][37][38][39] An integrated patient-and family-centered medical home is essential for CWT living at home. This study aims to better understand the needs of caregivers of CWT living at home in an urban setting, foster their care and engagement in a medical home model, and inform the development of a family-centered simulation-based training curriculum.…”

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confidence: 99%

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Identifying Caregiver Needs for Children With a Tracheostomy Living at Home

Mai

Davis

Hamilton

et al. 2020

Clin Pediatr (Phila)

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This study sought to understand caregiver needs of children with tracheostomies (CWT) living at home and inform development of standardized tracheostomy simulation training curricula. Long-term goals are decreasing hospital readmissions following tracheostomy placement and improving family experiences while implementing a medical home model. We recruited caregivers of CWT and conducted semistructured interviews, subsequently recorded, transcribed, and analyzed for emerging themes using NVivo. Demographic data were collected via quantitative surveys. Twenty-seven caregivers participated. Emerging themes included the following: (1) caregivers felt overwhelmed, sad, frightened when learning need for tracheostomy; (2) training described as adequate, but individualized training desired; (3) families felt prepared to go home, but transition was difficult; (4) home nursing care fraught with difficulty and yet essential for families of CWT. Families of CWT have specific needs related to discharge training, resources, support, and home nursing. Provider understanding of caregiver needs is essential for child well-being, patient-/family-centered care, and may improve health outcomes.

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Section: Discussionmentioning

confidence: 99%

mentioning

confidence: 99%

Identifying Caregiver Needs for Children With a Tracheostomy Living at Home

Mai

Davis

Hamilton

et al. 2020

Clin Pediatr (Phila)

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“…In terms of the access of these children, youth, and families to health services, this study's findings reveal they face difficulties because of the distance of the services and the slowness in which health problems are resolved. Other studies 13,24 conducted with health workers also report difficulties faced by the parents of children and youth with special healthcare needs because of the distance of their homes from the health units, a lack of adapted transportation, and the unit's improper infrastructure to receive this population. Note that these factors may directly interfere with which health services families seek.…”

Section: /13mentioning

confidence: 99%

“…Additionally, they concluded that the ordeal up to establishing a diagnosis also reveals barriers to the access of this population to health services. 17,24 These situations need to be discussed because PHC is the health system's entrance door, the guiding and coordinating basis of the Health Care Network (RAS). Hence, workers in these services should be prepared to meet this demand and prevent many avoidable hospitalizations.…”

Section: /13mentioning

confidence: 99%

Children and Youth With Special Healthcare Needs: (Dis) Continuity of Care

Sulino

Okido

Neves

et al. 2021

Texto contexto - enferm.

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Objective to investigate the follow-up and characteristics of children and youth with special healthcare needs within Primary Health Care services located in a city in the State of São Paulo, Brazil. Method this qualitative study was supported by the Primary Health Care framework, and interviews were held with 37 health workers from the primary health care units located in the interior of São Paulo. Data were collected from May to December 2018 and treated with inductive thematic analysis. Results from the perspective of the health workers, the characteristics of these children and youth are centered on the dependence of specific care such as to promote psychomotor development, and dependence on technology and pharmacological treatments. They reported the difficulty to access health services while the primary health care services do not implement systematic follow-up. Conclusion these children and youth demand continuous and longitudinal care, which, however, is not provided by primary health care services, considering the discontinuity of care and a lack of networked follow-up. Therefore, health services need to be reorganized to keep up with changes in the child and youth morbidity and mortality to ensure continuous, integral, and networked follow-up to this population.

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“…In the United States, parents of children with chronic health conditions are more likely to be racial and ethnic minorities than caregivers of adults, with Latinos representing the largest minority group [12]. Nonetheless, Latinos and parents from other historically marginalized groups are underrepresented in studies of interventions that aim to support parents of children with chronic conditions [5,13]. Most published studies that explore the use of technology to enable the delivery of supportive interventions for parents of children with chronic conditions were from Europe [14][15][16][17][18].…”

Section: Introductionmentioning

confidence: 99%

Self-Care Needs and Technology Preferences Among Parents in Marginalized Communities: Participatory Design Study

Yuwen¹,

Duran²,

Tan³

et al. 2021

JMIR Pediatr Parent

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Background Ten million parents provide unpaid care to children living with chronic conditions, such as asthma, and a high percentage of these parents are in marginalized communities, including racial and ethnic minority and low-income families. There is an urgent need to develop technology-enabled tailored solutions to support the self-care needs of these parents. Objective This study aimed to use a participatory design approach to describe and compare Latino and non-Latino parents’ current self-care practices, needs, and technology preferences when caring for children with asthma in marginalized communities. Methods The participatory design approach was used to actively engage intended users in the design process and empower them to identify needs and generate design ideas to meet those needs. Results Thirteen stakeholders participated in three design sessions. We described Latino and non-Latino parents’ similarities in self-care practices and cultural-specific preferences. When coming up with ideas of technologies for self-care, non-Latino parents focused on improving caregiving stress through journaling, daily affirmations, and tracking feelings, while Latino parents focused more on relaxation and entertainment. Conclusions Considerations need to be taken beyond language differences when developing technology-enabled interventions for diverse populations. The community partnership approach strengthened the study’s inclusive design.

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The Experience of Latina Mothers of Children and Youth With Special Health Care Needs: A Qualitative Study

Cited by 7 publications

References 26 publications

Identifying Caregiver Needs for Children With a Tracheostomy Living at Home

Identifying Caregiver Needs for Children With a Tracheostomy Living at Home

Children and Youth With Special Healthcare Needs: (Dis) Continuity of Care

Self-Care Needs and Technology Preferences Among Parents in Marginalized Communities: Participatory Design Study

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