“IT’S NOT A JOB YOU APPLY FOR”: A MIXED-METHOD EVALUATION OF THE ‘HEALTH LINKS’ CAREGIVER EXPERIENCE

Abstract

In 2012, the Ontario Ministry of Health and Long-Term Care launched Health Links (HL), a system-wide transformation to improve care coordination for the top 5% of health care users who account for 65% of health system costs. Informal caregivers (family/friends) are integral to supporting patients with multiple chronic conditions to remain at home. This study evaluated experiences of these caregivers of HL patients using mixed methods. Telephone interviews (n=16) and structured surveys (n=27) were conducted. Derived from the principles of the HL program, four sensitizing concepts guided the evaluation (i.e., patient and family-centred care; accessibility; continuity of care and care provider; and coordination of services). HL patients ranged in age from 50 to 96 years and their top health issues were: cognitive impairment (37.0%); a cardiovascular condition (37.0%); and/or a lung condition (29.6%). Caregivers were aged between 51 and 85 years, tended to be female (55.6%), married (70.4%), and provided ‘live in care’ (77.8%). Results showed that caregivers placed great value on providing care for their loved ones and were generally satisfied with HL. However, care planning rarely included informal caregivers; care coordination experiences were coordinator dependent; and access to caregiver respite was challenging (eligibility, costs, availability, patient disinterest). Half of the participants experienced consistency in care providers which provided relief. Despite supports offered to patients, caregivers experienced significant strain (Modified Caregiver Strain Index: mean=15.5[SD 7.03]), anxiety (Generalized Anxiety Disorder: mean=9.6 [SD 6.64]), and depression (CES-D 10: mean=11.8 [SD 8.72]) indicating that more attention should be paid to their needs.