Impact of internet-based support on informal caregivers' preparedness for caring for a person with heart failure - results from a randomised controlled trial

Abstract Background An internet-based support programme was co-designed with and for informal caregivers of persons with heart failure (HF) to enhance their preparedness for the caregiver role. The programme is published on a national healthcare web portal that is well-known and accessed by most Swedish citizens, and its long-term sustainability is supported through formalised governmental oversight. Supporting caregivers is critical. They often receive insufficient information and guidance to prepare them for caring for a person with HF or for managing their own support needs. This can be a stressful situation that negatively affects their health and well-being, social inclusion, and financial situation. Higher caregiver preparedness can improve outcomes for both the caregiver and the person with HF. Aim This study aimed to determine the effects of a co-designed internet-based support programme for caregivers of persons with HF. The primary outcome was change in preparedness for caregiving, measured using the validated Preparedness for Caregiving Scale (PCS). Methods Informal caregivers (18), identified and recruited via patients with HF (ICD-10 codes I42, I50), were enrolled in a single-blind, multi-site randomised controlled trial. Participants were randomly assigned to either an intervention group, who received access to the internet-based programme for 3 months, or the control group, who received usual support from the healthcare system. Linear mixed models for repeated measures were used to assess changes in PCS over time. Results A total of 202 informal caregivers (83% women; mean age 64 years) participated in the study. Most caregivers were partners (75%). The most common types of support provided by participant caregivers were emotional and psychosocial support (74%) and assistance with household tasks (63%). Additionally, 18% perceived their caregiving situation as ‘demanding’. At baseline, according to the PCS, 22% of caregivers felt poorly or not at all prepared, 40% felt somewhat prepared, and 36% felt well or very well-prepared. At 3 months, there was a significant improvement in favour of the intervention group in PCS (mean difference = 2.17, p0.007; time x group interaction p = 0.019) and PCS was consistent at 6 months in the intervention group. Conclusions The co-designed internet-based support programme improved informal caregivers’ perceived preparedness for caregiving and these effects persisted over time. This has implications for recommending the use of co-designed internet-based support and moving toward nationwide implementation as part of mainstream healthcare services.