Assessment & Research

Quality of life from the point of view of Latin American families: a participative research study.

Aznar et al. (2005) · Journal of intellectual disability research : JIDR 2005
★ The Verdict

Latin American families say love, calm, and respect beat money—use their 42-item checklist to shape goals that feel like home.

✓ Read this if BCBAs writing plans for Latino families of kids or adults with ID.
✗ Skip if Clinicians who only serve non-Latino groups and already use a fixed QOL tool.

01Research in Context

01

What this study did

Aznar et al. (2005) asked Latin American families what 'good life' means when a member has an intellectual disability. They ran group talks and home visits in Spanish and Portuguese. Families helped build a list of 42 signs of quality of life split into six areas.

02

What they found

The families said close, warm ties and feeling calm matter most. Money and big houses were lower on the list. The final tool has 42 items you can tick to see if services fit these views.

03

How this fits with other research

Burford et al. (2003) asked Swedish families the same big question. Even with free health care and cash help, Swedish parents still felt lonely and short on time. Both studies show that feelings, not cash, drive family life quality.

Boudreau et al. (2015) found that Latina moms feel more upset when kids show tough behavior and when moms speak less English. S et al. give you the flip side: a list of good things to boost, not just problems to cut.

Parish et al. (2012) showed that cold doctor visits block Latino families from care. S et al. add the fix: ask about family warmth and respect when you plan care, not only medical needs.

04

Why it matters

Use the 42-item Latin QOL list during intake. Ask about Sunday dinners, godparent help, or how often the family laughs. Goals that honor these answers feel right to the family and raise buy-in. You will write plans that fit their world, not yours.

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Add two questions from the Latin QOL list to your caregiver interview—ask 'Who helps you feel calm?' and 'What family times make you happiest?'

02At a glance

Intervention
not applicable
Design
qualitative
Sample size
180
Population
intellectual disability
Finding
not reported

03Original abstract

BACKGROUND: To date, little research has focused on what factors constitute a quality of life (QOL) among Latin American families with a member who is intellectually disabled. METHOD: Total 180 Latin American families cooperated in a participative research project. During 18 months, the families and a team exchanged information about their QOL by means of questionnaires and grids that the families analysed and completed at their homes. RESULTS: In Latin America, families attribute utmost importance to interpersonal relations and emotional well-being. In addition, results identified a number of QOL domains and indicators reflective of family-centred QOL among Latin American families. A tool with 42 indicators grouped in six areas was obtained. CONCLUSIONS: Quality of life is a concept that has meaning and structure which varies considerably from culture to culture. A topologic QOL model is presented to facilitate the cross-cultural understanding of the QOL construct.

Journal of intellectual disability research : JIDR, 2005 · doi:10.1111/j.1365-2788.2005.00752.x