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

Abstract:

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.

journal_name

Disabil Rehabil

authors

Saetermoe C,Gómez J,Bámaca M,Gallardo C

doi

10.1080/09638280410001703512

subject

Has Abstract

pub_date

2004-09-02 00:00:00

pages

1032-47

issue

17

eissn

0963-8288

issn

1464-5165

pii

8DWWHYBUKRJ2FWJJ

journal_volume

26

pub_type

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