Relieving Distressed Caregivers: a Pragmatic Trial

INTERVENTION: Intervention 1: Intervention group: Participants in the intervention group receive a stepped intervention over 9 months and monthly information letters with care specific information throughout the intervention period. Intervention period 1: Participants receive care counseling over 3 months delivered by a care counselor from the long‐term care insurance of the care recipient. Counseling consists of at least one home visit (Bavaria)/ initial telephone call (Baden‐Wuerttemberg) including an assessment and at least 2 additional follow‐up telephone calls. The intervention method is based on problem‐solving and provides caregivers with professional advice on all questions about long‐term care insurance and available services (in line with the statutory care counseling / social act §7a SGB XI). The offered care counseling aims particulary to improve problem‐focused coping in caregiver’s everyday life. Care counselors have been trained in the problem‐solving approach prior to the intervention period in a 2‐day workshop, as well as in 1 follow‐up training day and are continuously coached by licensed psychotherapists during the intervention. The coaching primarily aims to monitor treatment fidelity as well as to support counselors in coping with difficult counseling situations and other work‐related stressors. Intervention period 2: After completion of intervention period 1, the care counselor screens the caregiver for persisting high burden and difficulties in providing or organizing care. Depending on the outcome of this screening, the optional cognitive‐behavioral intervention is offered to the caregiver. After giving consent, caregivers receive 12 cognitive‐behavioral therapy sessions (50 minutes) over 6 months delivered by qualified psychotherapists via telephone. The first 4 sessions take place at weekly intervals, 6 further sessions follow at fortnightly intervals and the 2 last sessions at monthly intervals. The treatment is based on a cognitive‐behavioral treatm CONDITION: Burden of care PRIMARY OUTCOME: ­­Depressive symptoms (Center for Epidemiological Studies Depression Scale (CES‐D) measured at all 4 time points INCLUSION CRITERIA: Inclusion criteria regarding care recipient: a) 60 years or older b) Level of care (German "Pflegegrad") 1‐5 c) Member of AOK long‐term care insurance For caregiver: a) 18 years or older b) Provides care, support or supervision (including travel time) for the care recipient for at least 1.5 hours per day or at least 10.5 hours per week c) Has telephone access d) Is able to communicate via telephone e) Positive screening if two out of three questions regarding high level of burden answered with yes ((1) Care‐related physical or mental health problems, (2) Loneliness, (3) Burden of care). SECONDARY OUTCOME: ­‐ Physical complaints (Gießener Beschwerdebogen (GBB; Brähler, Hinz, & Scheer, 2008)); ‐ Health‐related quality of life (Veterans Rand 12 (VR‐12; Kazis et al., 2004; Buchholz & Kohlmann, 2015); ‐ Utilization of psychosocial resources (2 adapted scales from “the Psychosocial Resource Utilization Questionnaire” (Trösken & Grawe, 2003): Utilization of resources related to well‐being (9 items), utilization of resources related to coping with daily hassles (14 items; Töpfer, Sengewald, & Wilz, in prep., Töpfer & Wilz, subm.); ‐ Emotional well‐being (visual analogue scale; Wilz & Soellner, 2016); ‐ Self‐efficacy (Abbreviated Sense of Competence Questionnaire; Pendergrass et al., 2015; subscales "satisfaction with one's own performance", "consequences of involvement in care for the caregiver's life"); ‐ Coping with problems (Social problem‐solving inventory ‐ revised (SPSI‐R; D'Zurilla, Nezu, & Maydeu‐Olivares, 2002; Graf, 2003; subscale "negative problem orientation"); ‐ Quality of relationships (1 question); ‐ "Coping with the care situation" (1 question); ‐ Positive aspects of caregiving (6 questions); ‐ Perceived quality of care (care (14 questions), abusive behavior (8 questions)); ­‐ Health economic evaluation; ; Assessments are measured at all 4 time points