Informal caregivers involvement in heart failure self-care: perceived acceptability and contribution to heart failure self-care from a feasibility quasi-experimental study
Authors: Santos G , Liljeroos M , Tschann K , Denhaerynck K , Wicht J , Jurgens C Y , Hullin R , Schafer-Keller P 
Published: July 2023

Abstract

Funding Acknowledgements
Type of funding sources: Public Institution(s). Main funding source(s): HES-SO University of Applied Sciences and Arts Western Switzerland,
Service d’Aide et de Soins à Domicile de la Sarine, Fribourg

Background
Heart failure (HF) self-care is recommended to reduce HF hospitalisation and mortality. Informal caregivers play a key role in HF self-care support and contribute to outcomes. Uncertainties remain about the acceptability to include informal caregivers to support self-care in people with HF, as well as informal caregivers’ responsiveness of being exposed to an intervention supporting symptom perception in HF, a specific HF self-care process.

Purpose
We aimed to test an intervention supporting symptom perception in people with HF including among informal caregivers.

Methods
We used a quasi-experimental feasibility study with a pre-test post-test design. Informal caregivers and people with HF were exposed to an evidence-informed self-care support intervention targeting symptom perception, delivered by trained homecare nurses during one month at people with HF home. We assessed acceptability of informal caregivers involved in HF self-care support using the Treatment Acceptability and Preferences (TAP) Measure adapted for this study (responses from 1=completely disagree to 5=completely agree). We assessed outcome responsiveness regarding contribution to HF self-care using the Caregiver Contribution to Self-care of HF Index version 2 (CC-SCHFI 2), and caregivers’ burden with the Zarit Burden Interview. We used descriptive statistics and calculated effect sizes using Cohen’s d based on mean absolute change between pre and post intervention.

Results
Seven informal caregivers (mean age 64.7 years, 6/7 women) were exposed to the intervention. All were spouse or child of the people with HF. Mean acceptability score was 4.28. Informal caregivers’ contribution to HF self-care positively responded after intervention exposure. There was a 10-point increase on the CC-SCHFI 2 symptom monitoring and perception post intervention (mean score 69.1) compared to baseline (mean score 58.9) with a large effect size (Cohen’s d=1.37). Contribution to HF self-care maintenance and management also responded positively to the intervention, respectively from 60 to 63.5 for self-care maintenance (Cohen’s d=0.28) and from 49.3 to 52.5 for self-care management (Cohen’s d=0.17). Caregiver burden slightly increased 2-points post intervention from 18.5 to 20.5 with a low effect size (Cohen’s d=0.14). Mean caregiver burden scored high at baseline before intervention exposure, and informal caregivers reported low burden to participate in the intervention (TAP mean item score 4.4).

Conclusion
Informal caregivers reported the intervention as highly acceptable. Informal caregiver contribution to symptom monitoring and perception was responsive to the intervention, as well as overall contribution to HF self-care. Caregiver burden should be carefully monitored when involved in HF self-care support interventions. Evaluating the effectiveness of including informal caregivers in HF self-care support and in specific symptom perception is needed.Caregivers outcomes responsiveness