Self-management of patients living with nasopharyngeal cancer : a case study in Malaysia

Abstract

In Malaysia, nasopharyngeal cancer (NPC) is a major health problem. The treatment is a major concern given that patients chronically suffer from side effects. Self-management (SM) has been a promising strategy in managing chronic conditions, including cancer. However, it is very complex and individual, resulting in a complex need for support. This study aimed to explore SM from the perspective of patients living with NPC and their significant others, such as family and healthcare providers (HCPs), which might enlighten specific SM engagement concerns. An exploratory qualitative case study design was conducted based on the study aim. With pragmatism as the philosophical underpinning this study, data were collected using three methods; (1) in-depth, semi structured interviews; (2) participant-observation; and (3) document analysis. A purposive sample of 40 participants of patients (16), family members (7), and HCPs (17) was recruited from two general hospitals. Data analysis was conducted using framework analysis (interviews transcripts/observation field notes) and content analysis (documents). Findings from multiple sources and methods were triangulated to understand in-depth SM as the centre case of this study. The NPC trajectory experienced by the patients was presented in four phases; (1) Pre-diagnosis; (2) When being diagnosed; (3) During treatment; and (4) After treatment. Patients practised several SM strategies across the four phases, mainly based on their health beliefs. Four main themes emerged in each phase. Phase one; Process to health care seeking behaviour where patients tried to comprehend their situation ineffectively because of lack of cancer knowledge. Phase two; Process of accepting the disease to explain the emotional changes and management. Phase three; Dealing with treatment challenges to explain patients’ self-determination and strategies for gaining energy during treatment. Phase four; Dealing with the physical and emotional sequel as NPC survivors to explain how patients managed fears of cancer recurrent and health conflicts after cancer treatment. Patients needed support from family, HCPs and health care facilities. However, patients’ perceptions seemed different in certain aspects when compared to each other. Patients perceived they only need psychological (encouragement and companionship), and financial and logistic support to help them self-manage. Family had revealed otherwise. The family informed that patients need extended support in managing physical and social needs, which introduced challenges to the family to change life roles and responsibilities with patients. Although patients highly valued discussion on health problems with HCPs, they had issues in communicating actual needs. Informational support was obtained (advice and support to self-manage physical condition and treatment complications) mainly during the treatment phase. As a result, patients’ perceived support received as inadequate since they need specific and long-term support. In conclusion, SM of patients with NPC existed but was greatly influenced by their health beliefs/cultural beliefs and, in most cases, without sufficient and accurate knowledge, especially on symptoms management and psychological disturbances. Support from HCPs was mainly focused on direct medical management and not clearly defined in practice. Family holds a critical role in supporting patients, mainly to help with NPC’s physical and psychosocial changes/needs, but they are heavily impacted because of a lack of knowledge and experience in supporting the family with cancer. The study findings could inform recommendations in certain aspects of policy and guidelines, healthcare practice, education, and future research on SM of patients with NPC in Malaysia. Keywords: Cancer, nasopharyngeal cancer, self-management, self-management support