Measuring what matters to older persons for active living: part I content development for the OPAL measure across four countries.

AIMS: Many older persons do not think of themselves as "patients" but as persons wishing to live as actively as possible for as long as possible. However, most health-related quality of life (HRQL) measures were developed for use with clinical populations. The aim of this project was to fill that gap and to develop, for international use, a measure of what matters to older persons as they age and seek to remain as active as possible, Older Persons for Active Living (OPAL). METHODS: For content development, interviews about active living were conducted with older persons from Canada, USA, UK, and the Netherlands in English, French, Spanish and Dutch, respectively with subsequent thematic analysis and harmonization. RESULTS: Analyses of transcripts from 148 older persons revealed that active living was a "way of being" and not merely doing activities. Saturation was reached and a total of 59 content areas were identified. After grouping similar "ways" together and after conducting a consensus rating of importance, 19 unique and important "ways" remained. In some languages, formulating was challenging for three of the 19, resulting in changes to two English words and dropping two other words, yielding a final list of 17 "ways of being" with harmonized wording in 4 languages. CONCLUSION: This study underscores the significance of listening to older adults and highlights the importance of considering linguistic and cultural nuances in measure development.

Perceptions of QOL among caregivers of Mexican ancestry of adults with advanced cancer.

PURPOSE: There is a substantial gap in the literature about the perceptions of QOL of caregivers of Mexican ancestry. This qualitative study explores the role of culture on the perceptions of QOL of this understudied population. METHODS: Twenty caregivers providing care to adults with advanced cancer were interviewed. Thematic analysis identified several themes for each domain of QOL, including physical, psychological, social, and spiritual domains and the role of culture. RESULTS: Cultural background influenced all of the QOL domains. There was a tremendous synergy across domains of physical, psychological, social, and spiritual well-being. Extended family and religious beliefs, life experiences, and culture were important components of QOL for these caregivers. Cultural expectations influenced role functioning and caregiver burden. CONCLUSION: This study informs our understanding of the role of culture on perceptions of QOL. Future investigations should be conducted with other Latino subgroups to describe QOL and to determine the role of culture on perceived QOL. Interventions should be specifically designed to improve caregivers' QOL and to reduce the burden of cancer in this underserved population.

The cancer caregiving experience of caregivers of Mexican ancestry.

The act of providing care may be the same in all ethnic groups, but the way caregiving is defined by family members is influenced by cultural values and beliefs. This study describes the caregiving experience and challenges of caregivers of Mexican ancestry. Qualitative interviews of 20 family caregivers and thematic analysis of transcribed audiotapes identified four themes that characterized their caregiving experience. These themes include an emphasis on family values, a strong commitment to care, difficulties dealing with everyday life realities, and a reliance on spirituality, all of which added to the meaningfulness and burden of caregiving. Further investigation within a cultural context is warranted in the development of interventions and programs to better assist caregivers in coping with the challenges of providing cancer care.