Symptom experience and perceived symptom manageability among people with HIV in China: a phenomenological study

Symptoms play an important role in the evolution of the patient's disease and their quality of life among people with HIV (PWH). This study aimed to explore the Journey of symptoms experienced and perceived symptom manageability (PSM) among PWH under the Chinese Cultural Context.

A qualitative, phenomenological study was conducted at an HIV-designated medical institution in mainland China. From April 2021 to June 2021, in-depth interviews with 11 PWH and focus group interviews with 6 nurses working in HIV wards were conducted, and their related experiences, attitudes, and coping were studied and deeply described. Data collection and analysis were carried out simultaneously by two researchers, respectively.

Based on the research scope, two primary themes and five sub-themes were extracted and refined from the perspectives of the HIV/AIDS population and clinical nursing staff. Each theme encompasses several sub-themes: Theme 1: Perception of Symptom Manifestation includes the following sub-themes: Sub-theme 1-1: Physical and Perceptual Dimensions of Symptom Experience (Sub-theme 1-1-1: Distress Rooted in Recurrent and Persistent Symptoms; Sub-theme 1-1-2: Confusion Regarding the Different Origins of the Same Symptoms); Sub-theme 1-2: Anticipatory Anxiety About Symptom Trajectories (Sub-theme 1-2-1: Anxiety Regarding Symptom Progression and Dynamic Evolution; Sub-theme 1-2-2: Collapse Following the Concurrent Interaction of Multiple Symptoms); Sub-theme 1-3: Adaptive Tension in Symptom Management (Sub-theme 1-3-1: Comparison Between Self-Perception and Clinical Objective Indicators; Sub-theme 1-3-2: The Struggle Between Exhaustion and the Will to Survive). Theme 2: Perception of Symptom Manageability-Harmonious Unity of Heaven, Earth, and Humanity consists of the following sub-themes: Sub-theme 2-1: Perception of Self-Worth; Sub-theme 2-2: Perception of the Value of Social Support Systems (Sub-theme 2-2-1: Self-Awareness and Self-Regulation; Sub-theme 2-2-2: Self-Coping with Symptoms; Sub-theme 2-2-3: Growth Under the Care of the State and Society; Sub-theme 2-2-4: Hope Evoked by Medical Care and Nursing; Sub-theme 2-2-5: The Contradictory Nature of Resource Supply and Demand); Sub-theme 2-3: Perception of the Value of Interpersonal Interaction Systems (Sub-theme 2-3-1: The Motivation of Love and Being Loved; Sub-theme 2-3-2: Satisfaction After Reflection on Conflicting Events; Sub-theme 2-3-3: Exemplification of Successful Role Models; Sub-theme 2-3-4: The Burden Within the Culture of Illness).

The manifestation of symptoms, coping strategies, and depictions of the concept of PSM among PWH are intricately intertwined with individual characteristics, life experiences, cultural backgrounds, and other factors. This study provides a systematic exposition and conceptual delineation of PSM. By elucidating culture-specific coping strategies and their implications for HIV care, this research significantly advances the understanding of PSM within the Chinese context. This lays the groundwork for an exploratory study into the intrinsic motivational mechanisms underlying the perception of symptom manageability in the future.