A qualitative enquiry of caregivers of adolescents with severe disabilities in Guatemala City

Purpose: This study explores the experiences of lower middle class Ladino and Indígena parents and caregivers of adolescents with severe physical disabilities as they negotiate Guatemala's urban health care and education systems. Method: Interviews with parents and guardians regarding the diagnostic period, current functioning in several domains and resources were analysed using Constructivist Grounded Theory with 15 families in Guatemala City. Results: Juxtaposing economic resources with preparation for adult roles along two dimensions in an axial grid, individual differences were identified. When families experience financial urgency, finding it difficult to meet even basic needs, securing employment immediately is most salient in the transition to adulthood (Low Resources, High Preparation); when families have greater resources, they are less pressed for economic input and, instead, describe a longer-term concern for the educational and professional development of their child (High Resources, High Preparation) or worry about the care of their offspring after their demise (High Resources, Low Preparation). Conclusions: Practitioners, therapists, parents and policy-makers can be more effectual in providing targeted services by understanding individual differences in the perception of disability, economic resources, and the need for other resources that ensure viable adult roles for young people with disabilities in Guatemala and elsewhere.