The More You Know - The Less You Worry – an intervention study exploring the experience of targeted information for informal caregivers

Abstract Introduction Informal caregivers of patients undergoing stoma surgery related to colorectal cancer are significantly affected, often experiencing negative impacts on their own well-being and health. Although caregiving is legally voluntary, it is difficult to decline in practice. Despite their crucial role, caregivers’ needs for support are rarely recognised by the healthcare system. Structured, person-centred information has been identified as essential for patient recovery and reintegration. However, until now, no materials have been developed specifically to improve conditions for informal caregivers. Method This intervention study explored informal caregivers’ experiences of targeted information in connection with stoma formation related to colorectal cancer. A brochure was developed and later evaluated through telephone interviews with ten participants, recruited from a university hospital in the south of Sweden. Data collection focused on their experiences with the brochure and the verbal information provided according to standard care. Result The brochure addressed previously unmet informational needs amongst informal caregivers, improved an understanding of the care process and acknowledged the importance of emotional support. Verbal information was considered beneficial but was often conveyed indirectly—relayed through the patient or provided reactively in response to specific questions. As a result, the extent of information received was largely dependent on the caregiver’s initiative and ability to actively seek it. Discussion Implementing targeted information enables a systematic and much-needed transfer of knowledge to informal caregivers. Healthcare professionals should recognise caregivers both as key contributors to the patient’s care as well as individuals with distinct needs for informational and emotional support.