ABSTRACT
INTRODUCTION: Patients often feel unprepared and concerned about their new life after a major lower extremity amputation (LEA). Therefore, we implemented an integrated care program, Safe Journey, to optimize the quality and continuity of care for patients with LEA due to vascular disease when transitioning from hospital to home. This study aims to illuminate and explore the experiences of patients with LEA and their relatives with the transition from hospital to home after implementing Safe Journey. MATERIAL AND METHODS: This qualitative, exploratory study individually interviewed six patients with a major LEA and four relatives and jointly interviewed eight patients with their relatives. RESULTS: The participants' experiences transitioning from hospital to home were centered around two major themes: (1) Going home: mixed emotions and confusion, and (2) bridging the gap. The main themes encompassed six subthemes: (1) simultaneously expectant and worried, (2) a lack of knowledge creating uncertainty, (3) an unexpressed but pending need for psychosocial support, (4) reassurance but safety comes at a price, (5) navigating the system, and (6) lack of involvement. CONCLUSION: Transitioning from hospital to home after a major LEA creates mixed emotions. Knowledge, feeling involved, and being prepared and cared for were highlighted as important during the transition. The Safe Journey program made patients and relatives feel physically reassured and safe, but all the home visits strained the families. The program's benefits are consistent with existing knowledge on patients with complex needs benefitting from integrated care models. However, a more individualized and person-centered approach is needed.
ABSTRACT
INTRODUCTION: Major lower limb amputation is a significant event with substantial implications for patients' quality of life. Care, treatment, and rehabilitation are largely governed by evidence-based recommendations, and patients' preferences are sparsely represented. The aim of this systematic review was to explore patients' perspectives on major lower limb amputation resulting from vascular disease. METHODS: We searched PubMed, CINAHL, Embase, and PsycINFO for studies with a qualitative design. We included interview studies describing patients' perspectives on major lower limb amputation from the moment of decision to several years after. All studies were assessed using the Critical Appraisal Skills Program (CASP) checklist, and thematic synthesis of the extracted qualitative data was performed. FINDINGS: Thirteen qualitative studies from 2010 to 2021 with prosthetic and non-prosthetic users were included. Six main themes emerged from the synthesis: 1) Confronting the amputation, 2) Emotional response, 3) Concerns about a new way of life, 4) Physical changes to the body, 5) Interactions with relations, and 6) Healthcare and information requirements. CONCLUSIONS: Patients with major lower limb amputation experience physical, mental, practical, and financial worries and challenges. Support and empathy are important for helping patients to cope with the emotions, uncertainty, mobility issues, and expectations of autonomy and level of functioning following amputation, and to enable them to adjust to their new normality.
