What are recent findings from qualitative research on immigrant Latino caregivers of children with Special Healthcare Needs (SHCN)?

From the Guidelines

Recent qualitative research on immigrant Latino caregivers of children with Special Healthcare Needs (SHCN) highlights the need for culturally sensitive care and support to address the unique challenges they face. These caregivers encounter significant barriers, including language difficulties, limited healthcare literacy, and challenges navigating complex healthcare systems 1. Studies show they often experience financial strain due to high medical costs, transportation issues, and lost wages from taking time off work for appointments. Cultural factors also play a role, with some caregivers reporting stigma within their communities regarding disabilities and developmental delays. Research indicates these families frequently lack adequate social support networks due to separation from extended family in their countries of origin.

Key Findings

• Language difficulties and limited healthcare literacy are major obstacles for immigrant Latino caregivers of children with SHCN
• Financial strain is a common experience due to high medical costs and lost wages
• Cultural stigma regarding disabilities and developmental delays can affect caregivers' perceptions and actions
• Lack of social support networks due to separation from extended family is a significant challenge
• Healthcare providers often fail to provide culturally sensitive care or appropriate language services, leading to miscommunication about diagnoses and treatment plans

Recommendations

• Healthcare systems should implement comprehensive interpreter services to facilitate communication
• Culturally tailored education materials and care coordination assistance can help address the unique needs of these families
• Community health worker programs can provide additional support and connect families with necessary resources
• Healthcare providers must prioritize culturally sensitive care and develop strategies to earn the trust of immigrant Latino caregivers, as highlighted in recent studies 1. Despite these challenges, studies highlight remarkable resilience among these caregivers, who develop innovative coping strategies and advocacy skills to ensure their children receive necessary care. By addressing these challenges and implementing supportive strategies, healthcare systems can improve outcomes for children with SHCN and their families.

From the Research

Recent Findings on Immigrant Latino Caregivers of Children with SHCN

• A 2016 integrative literature review 2 found that Latino caregivers of children with chronic health conditions utilized coping strategies such as religion/spirituality, alternate healing practices, family support, and education about the child's illness.
• The review also identified language, cultural dissimilarities, receiving inadequate information about the child's health care, differences in health beliefs, and feeling disrespected by providers as common coping challenges.
• A 2022 qualitative study 3 explored the communication challenges faced by Spanish-speaking caregivers of children with medical complexity, finding that language barriers and multiple factors at caregiver, provider, and system levels contributed to these challenges.
• The study also found that communication challenges had serious consequences for the children's healthcare, but that bilingual coordinators could help improve communication between caregivers and healthcare providers.

Barriers and Facilitators to Care

• A 2023 qualitative study 4 identified barriers to accessing care among immigrant caregivers of hospitalized children, including healthcare system barriers, immigration-related fear, and racism and discrimination.
• The study also found that healthcare system facilitators of resource use included recruiting diverse workforces, utilizing language interpretation, guidance on benefit enrollment, legal services, and mental health services.
• A 2018 qualitative substudy 5 found that an education intervention could improve knowledge and attitudes regarding end-of-life resources among Latino caregivers, with participants learning about the importance of accepting help and knowing about available services.

Interventions for Immigrant Latino Families

• A 2019 mixed methods study 6 evaluated the preliminary results of adaptive recruitment and parenting interventions for immigrant Latino families with adolescents, finding high father enrollment and high participation in the intervention.
• The study also found that participants were satisfied with program modifications, and that the intervention addressed positive parenting practices using a strengths-based framework.