Living with a venous leg ulcer: Lived experiences and the presence of self-care in daily life

Abstract

Abstract [en] Aim: The overall aim of this thesis was to describe the lived experiences of patients with hard-to-heal venous leg ulcers before and after healing, as well as the understanding of the role and presence of self-care activities in ulcer management. Methods: The thesis is based on four studies, with differing designs. In Studies I and II, a phenomenological approach was used. To describe lived experiences of undergoing ulcer management, 16 persons were interviewed (I), and to describe lived experiences of daily life after healing,15 persons were interviewed (II). Study III was a registry-based, quantitative study. In total, data from 699 patients with venous leg ulcers(VLUs) were analyzed. Logistic regressions were performed to describe associations between advice given on self-care and its impact on ulcer healing. Study IV, which focused on patient experiences of the feasibility of an intervention for self-care, was based on eleven interviews with six patients with VLUs. The data from the interviews underwent qualitative content analysis. Results: Ulcer management aims at ulcer healing. In the protracted process, patients often experience hopelessness. When healing is slow, patients doubt the professionals’ knowledge. A patient’s trust in professionals and the entire healthcare system may erode if treatment and information vary between different professionals (Study I). Study II revealed that daily life after healing was still strongly affected by the ulcer. Memories from a lost period in life were ever-present. Life after healing was changed – for some, life was not very eventful. The patients’ own knowledge was often limited, and there was a struggle to do what was best for the own body to prevent a new ulcer. Study III revealed that advice on nutrition and physical activity had no impact on healing time. Only 44% of the sample were advised on both nutrition and physical activity. It was common to have an ulcer for a long time before seeking help; about half of the sample had an ulcer for >84 days before registration. Other findings were that the median age among the 699 patients was 77 years, the majority were female, and comorbidity was common. The intervention tested in Study IV offered welcomed information. However, even among those experiencing some sense of recognition, the link to their own situation and life was unclear. The technical solution with videos on a flash drive was difficult for most people to use. The importance of close cooperation with professionals was highlighted. Conclusion: Venous leg ulcers have a profound impact on patients and their life situations. Ulcer management can, in different ways, impose suffering on patients. Not being listened to or seen as a person is anexperience that leaves its marks on a patient. When healing is slow, and someone has to be blamed, relationships with professionals are damaged. The role of self-care is unclear for most patients, which makes self-care harder. Those who tried a video-based intervention for self-care showed difficulties in relating it to their own life. Enabling a caring relationship can enhance patients’ understanding of information and advice. Patients must be invited to share their own experiences, to create a foundation for self-care. The provision of advice alone is not the solution to the issues related to self-care.