The Measure of the Family Caregivers’ Experience

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.

The Influence of Family Caregivers’ Experience of Interprofessional Care on Their Participation in Health Checkups as Preventive Health Behavior in Japan—A Cross-Sectional Analysis

“…We used the Japanese version of the Caregivers’ Experience Instrument (J-IEXPAC CAREGIVERS). The Caregivers’ Experience Instrument, also called IEXPAC CAREGIVERS, is a scale which measures family caregivers’ experience of integrated health and social care for both patients with chronic conditions and their family caregivers [ 25 ]. This scale was developed and validated in Spain, based on the Instrument to Evaluate the EXperience of PAtients with Chronic Diseases (acronym in Spanish: IEXPAC), which is theoretically based on the Chronic Care Model and is inspired by patient-centered integrated care approaches [ 30 ].…”

“…We previously developed a Japanese version of a scale to measure family caregiver experience of interprofessional care for patients and families [ 24 ]. This instrument was originally developed in Spain to measure the quality of integrated health and social care [ 25 ], and includes elements of professional attention to the health and well-being of family caregivers themselves. This scale can be used to assess the quality of health and social care from the caregivers’ perspective.…”

Spanish Validation of the “User Reported Measure of Care Coordination” Questionnaire for Older People with Complex, Chronic Conditions

“…(2) 100 103 (28.5%) 125 (34.5%) 129 (35.6%) 5 (1.4%) Q3 (3) 100 244 (67.4%) 81 (22.4%) (9.4%) 3 (0.8%) Q4 (4) 100 102 (28.2%) 168 (46.4%) 82 (22.7%) 10 (2.8%) Q5 (5) 100 138 (38.1%) 132 (36.5%) 49 (13.5%) 43 (11.9%) Q6 (5) 100 (4) 90.9 206 (62.6%) 107 (32.5%) 14 (4.3%) 2 (0.6%) Q9 (7) 99.7 259 (71.7%) 78 (21.6%) 18 (5%) 6 (1.7%) Q10 (4) 99.7 238 (65.9%) 94 (26%) 27 (7.5%) 2 (0.6%) Q11 (8) 100 45 (12.4%) 261 (72.1%) 56 (15.5%) Q12 (9) 100 29 (8%) 129 (35.6%) 140 (38.7%) 64 (17.7%) Q13 (5) 100 179 (49.4%) 134 (37%) 33 (9.1%) 16 (4.4%) Q14 (10) 100 26 (7.2%) 113 (31.2%) 204 (56.4%) 19 (5.2%) Q15 (7) 100 185 (51.1%) 133 (36.7%) 30 (8.3%) 14 (3.9%) Q16 (4) 100 167 (46.1%) 155 (42.8%) 32 (8.8%) 8 (2.2%) Q17 (4) 100 186 (51.4%) 142 (39.2%) 31 (8.6%) 3 (0.8%) Q18 (11) 100 253 (69.9%) 64 (17.7%) 21 (5.8%) 9 (2.5%) 14 (3.9%) 1 (0.3%) Q19 (12) 99.7 141 (39.1%) 117 (32.4%) 42 (11.6%) 29 (8%) 32 (8.9%) Q20 (5) 100 103 (28.5%) 133 (36.7%) 85 (23.5%) 41 (11.3%) D3. Social Services Q21 (13) 100 118 (32.6%) 244 (67.4%) Q22 (14) 32.6 58 (49.2%) 6 (5.1%) 46 (39%) 8 (6.8%) Q23 (15) 32.6 60 (50.8%) 28 (23.7%) 21 (17.8%) 1 (0.8%) 8 (6.8%) D4. Treatment Plan Q24 (16) 100 93 (25.7%) 181 (50%) 88 (24.3%) Q25 (4) 93 25.7 48 (51.6%) 40 (43%) 4 (4.3%) 1 (1.1%) Q26 (4) 93 25.7 35 (37.6%) 52 (55.9%) 6 (6.5%) Q27 (5) 48.1 51 (29.3%) 67 (38.5%) 10 (5.7%) 46 (26.4%) Q28 (4) 99.4 187 (51.9%) 104 (28.9%) 36 (10%) 33 (9.2%) Table 2.…”

“…Instruments such as the one developed by Nuño-Solinís et al [9] have shown very good ease-of-use in daily practice, but its application is limited to the organizational level. We need new instruments to measure care coordination across all levels of care, principally when registering the perspectives of the populations [14]. Through this approach, we aim to measure the impact on the health of the population.…”

“…(1) Yes, they receive the help they need; (2) They get help, but not as much as they need; (3) No, they get little or no help; (4) They don't need/want help; (5) There's no family member or care worker involved 13. (1) Yes; (2) No 14. (1) Yes, the right frequency; (2) No, I need fewer visits; (3) No, I need more visits; (4) Not applicable.…”