Project description
The project consists of two components — co-design of an internet-based support programme for informal carers of persons with heart failure, and evaluation of the programme.
Part 1: Co-design of the support programme
We have co-designed the support programme in collaboration with informal carers of persons with heart failure. Nurses, physicians, carer support professionals, social workers, priest, and researchers have also contributed to the development of the programme’s content (https://doi.org/10.1111/jocn.16856).
Part 2: Evaluation of the support programme
Our primary hypothesis is that the support programme will improve carers’ sense of preparedness to provide care, assistance, or support to the person with heart failure. We will also examine whether use of the programme affects carers’ experiences of their caregiving situation, as well as their own health and quality of life. This will be assessed using instruments that measure carers’ caregiving experiences and their management of heart failure. In addition, we will explore whether carers’ participation in the study influences use of healthcare by the persons with heart failure.
The study has a randomised controlled multicentre design, with a planned enrolment of 200 carers randomised into two groups. The intervention group will receive immediate access to the support programme (described below) and will receive reminders about programme use. The control group will receive the standard support typically offered to carers by healthcare and municipal services; they will be offered access to the support programme after study completion. Data are collected at baseline, and at three and six months’ follow-up.
Description of the support programme
The support programme consists of 15 modules, each addressing a specific area reflecting the needs and interests expressed by carers during the co-design process. The module content has been developed with input from various experts, including carers themselves, a social worker specialised in cardiac care, physicians, and heart failure nurses.
The aims of the support programme are to:
• Increase carers’ awareness of their own situation
• Support carers in prioritising their own needs
• Provide guidance on how to care for oneself as a carer, including practical tips and advice
• Offer specific information and knowledge about heart failure and the caregiving role
Below you can view the welcome video from the support programme.
