Exploring the experiences and psychosocial stresses of Taiwanese patients with pulmonary hypertension: a qualitative interview study

Abstract

About half of all patients with pulmonary hypertension (PH) experience psychological and emotional disturbances that affect their quality of life (QOL). There is a lack of studies exploring how psychiatric professionals can provide specific and effective mental health treatment to patients with PH. This study aimed to explore and understand the treatment experiences of patients with PH in Taiwan. We employed an exploratory qualitative design involving interviews with 17 patients with PH who were treated at Kaohsiung Veterans General Hospital in Taiwan. Participants were interviewed by a psychiatrist; the interviews were audiotaped and transcribed for thematic analysis by two researchers. We corroborate earlier findings showing that patients who have the rare disease PH often experience psychological or emotional disturbances throughout the treatment process. This study explored a model for psychiatric intervention based on patients’ experience of having PH. We find that assessing and strengthening links to external resources can enhance patients’ long-term coping abilities, and thereby help reduce their psychological and emotional disturbances and improve their QOL.

Quality of Life in Patients With Pulmonary Hypertension

“…However, more than half of those patients said that they needed or were considering seeking professional support to deal with their loss of adaptability and emotional disturbance (Muntingh et al, 2017). A good social support system, stable physical condition, and positive thinking can help patients to cope with the stress caused by the disease (Chiang et al, 2018; Muntingh et al, 2017). In addition, strong social support can also help to improve their quality of life (QOL) (Tartavoulle, 2015).…”

“…Research on the PH population in Taiwan suggests that PH challenges patients physically, psychologically, and socially (Chiang et al, 2018). Deterioration of cardiopulmonary function reduces the patient's capacity to perform activities of daily living, and in turn affects their role in their family and community.…”

Adults’ experiences of living with pulmonary hypertension: a thematic synthesis of qualitative studies

“…Receiving the diagnosis was described as ‘ life-changing’ [37, p. 4]. While people responded differently, for instance, expressing feelings of ‘ relief ’—as they can now receive treatment [22, p. 3]—‘ shock ’ [30, p. 38], helplessness 30 and confusion, 26 a strong emotional response was evident. 31 Following the diagnosis, individuals ruminated over the cause of their disease.…”

“…Participants were saddened, 30 “t errified ”[35, p. 162] and anxious over the prospect of their death. 17 25 Individuals described many uncertainties associated with their prognosis including, how their disease would progress, 23 35 what their future would hold, 34 the impact of their death on loved ones 17 21 25 and how long they had remaining: “ I am clueless as to how long my heart will hold out” [29, p. 3].…”

“…Life with PH could have a negative effect on participant’s mental health, with anxiety, low mood, isolation 23 25 29 32 35 and suicidal ideation being discussed. 30 37 …”