Experiences of Spanish-speaking Families Accessing Transitional Services for Children with Special Healthcare Needs Margaret Emmott Gilbreth, MD, Roberta S. Rehm, PhD, RN, FAAN*, Megumi Okumura, MD, MAS** *School of Nursing, Family Healthcare Nursing, **Division of General Pediatrics, University of California, San Francisco BACKGROUND •

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Transition to adult care and services is a complex for all children with special healthcare needs (CSHCN), especially for medically fragile children with complex service needs Only 12.4 % of Spanish-speaking CSHCN receive recommended services for transition from pediatric to adult care

RESULTS

DISCUSSION

Implicit & Structural Bias: Caretakers are faced with many barriers to accessing services, including lack of Spanish-speaking health providers, lack of Latino health providers, and a culture of being declined services at first request for support.

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Current systems of health care and social support for CSHCN support individual autonomy of children but do not support nor value family unity and maintaining care in the home after aging into adult care, which is the cultural preference of many Spanish-speaking families.

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Our study also documents the systemic forms of discrimination that have evolved, especially for underfunded programs with high demand, to create communities of “have” and “have not” based on a family’s ability to communicate, effectively advocate, and assemble significant support for their children and the child’s caregivers.

“Pues yo digo que es el idioma. Porque no le voy a decir que son racistas los doctores porque no es eso. Porque no nos podemos comunicar. No les puedo decir todo francamente porque no me lo entienden. Y en la escuela también.” “I say it is because of the language. Because I won't tell you that the doctors are racist because they are not. It's because we can't communicate. I can't tell them everything as it is because they don't understand me. And the same thing at the school.”

Few studies have explored family perspectives of how caregivers seek or use existing services, especially for non-English speakers

OBJECTIVE To investigate the experiences of Spanish-speaking caregivers of navigating health, educational, legal, and support services for transition-aged CSHCN

METHODS Study Design: Grounded Theory Data Collection: In-depth, semi-structured interviews with individuals or pairs were conducted in Spanish, translated, then checked for context by native speakers Inclusion Criteria: - Exclusive Spanish-speaking caretakers - Targeted recruitment of caretakers for children with complex care needs and high service needs - Recruited from one academic and one community primary care site in the Bay Area Study Sample: • N=12 interviews, 13 participants • Parent: 11, Grandparent: 2 (in combined interview) • Children age 12-22 years old • Variety of diagnoses: neonatal stroke, cerebral palsy with developmental delay, autism, trisomy 21, and others • Interviewee countries of origin: Peru, Central America, Mexico Analysis: Analysis was a multi-step iterative process including open coding, development of categories, focused coding, and refining of major categories leading to development of a theoretical code: Facilitating a Family-Centered Future.

Implicit & Structural Bias

Variable Levels of Support

Variable Levels of Support: Caretakers have variable levels of family and community support in caring for children and advocating for needed services. Often, extended family and siblings assist with daily care needs. At times, social workers and health providers may go “above and beyond” to help families navigate difficult systems of care. Many care providers have been negatively impacted by trauma, chronic stress, and other threats to resilience.

Facilitating a FamilyCentered Future

“Con los doctores, les he pedido más de una vez. Que el hospital después le puede dar esos servicios a [mi hijo], porque yo sé que ellos tienen centros donde pueden darle esa ayuda a [mi hijo]. Y no se la han dado. Siempre o me mandan para el distrito escolar, que tampoco hacen nada, y me traen como que soy una pelota de la playa.”

Impact of Cultural Norms & Differences

“I have asked the doctors more than once. The hospitals can give those services to [my child], because I know that they have centers where they can give that kind of help to [my child]. And they haven't given it to him. They always either send me to the school district, where they don't do anything either, or they bounce me around like a beachball.”

Impact of Cultural Norms & Differences: Caretakers have unique hopes, fears and plans for their children that differ from the focus on independence from family that is promoted in the US care system. Most caretakers see their child’s future with parents and family at the core. Caretakers also described enormous differences between culture of disability and systems of care for CSHCN in the US compared to their countries of origin. “Entonces, por eso es que digo yo, para que esté en un lugar así, mejor no, mejor estamos en casa y la cuidamos con amor. Y no en ese lugar que la gente trabaja por trabajar y no demuestra esa compasión por estos pacientes o clientes. Y por eso es que decidimos que ella quede en casa.” “It's better for her to be at home and we can take care of her with love. And not in that place that people go to work just to work and don't show that compassion for patients or clients. That's why we decided that she should stay at home. “.

CONCLUSIONS •

This study highlights the unique experience and perspectives of Spanish-speaking parents navigating systems and resources necessary to care for transition-age CSHCN.

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Latino families’ preference for family unity rather than transition to independence and autonomy among other beliefs differs from the norms of English-speaking families identified in other studies.

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Findings suggest the importance of redesigning services offered and systems of care delivery to better meet the unique needs of non-English speaking Latino families, including increasing family-based services, recruitment and support of Latino health providers, and improved interpreter services in school and healthcare settings.

LIMITATIONS, DISCLOSURES, AND ACKNOWLEDGEMENTS Interviews were limited to individuals from a single county and may not represent experiences nationally None of the authors have any relevant financial disclosures This work was funded by AAP CATCH Award, AAP Resident Research Award, CTSI Resident Research Award and supported by funding from AAP Healthy Tomorrows.