The Measure of the Family Caregivers' Experience

Mercedes Guilabert, Paloma Amil, Asunción González-Mestre, Esther Gil-Sánchez, Anna Vila, Joan Carles Contel, Juan Carlos Ansotegui, Olga Solas, Ma Teresa Bacigalupe, Paloma Fernández-Cano, Marisa Arteagoitia, José Joaquín Mira, Mercedes Guilabert, Paloma Amil, Asunción González-Mestre, Esther Gil-Sánchez, Anna Vila, Joan Carles Contel, Juan Carlos Ansotegui, Olga Solas, Ma Teresa Bacigalupe, Paloma Fernández-Cano, Marisa Arteagoitia, José Joaquín Mira

Abstract

Objective: Design and validate a measure of the experience of family caregivers with the integrated care that receive the persons they care for. Methods: The new instrument for measuring the experience of caregivers is based on the Instrument to Evaluate the EXperience of PAtients with Chronic Diseases (acronym in Spanish: IEXPAC) scale instrument. With the qualitative technique of the discussion group, nine professionals and eight caregivers assessed the face validity of the instrument and they advised on issues to explore and the measuring scale to use. The instrument's items were analyzed individually, as well as its consistency, reliability, and construct and empirical validity. Results: 235 caregivers responded, of which 186 (79%) were women. The average age of the persons under their care was 83.9 years (SD 9.7). The scale's score when eliminating its items one by one ranged between 38.6 and 41.1. The factorial saturations of the items ranged between 0.53 and 0.82. Cronbach's alpha (12 elements) was 0.88 and the Kuder-Richardson coefficient was 0.91. The factorial solution explained 64.3% of the total variance and allowed isolating two factors (with 11 items with saturations greater than 0.65): care for the patient, and care for the caregiver. The internal consistency of both factors was greater than 0.80. The scale's score was 41.1 (SD 9.7). Conclusions: The Caregivers Experience Instrument combines acceptability, ease of comprehension, and perceived usefulness for the caregivers. It has adequate internal consistency, reliability, and construct and empirical validity.

Keywords: caregivers; chronic disease; health services evaluation; quality assurance.

Conflict of interest statement

The authors declare no conflict of interest.

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