Combining creative writing and narrative analysis to deliver new insights into the impact of pulmonary hypertension

Abstract

IntroductionPulmonary hypertension is life limiting. Delays in diagnosis are common, and even after treatment has been initiated, pulmonary hypertension has marked effects on many aspects of social and physical function. We believed that a new approach to examining disease impact could be achieved through a combination of narrative research and creative writing.MethodsDetailed unstructured narrative interviews with people with pulmonary hypertension were analysed thematically. Individual moments were also summarised and studied using creative writing, in which the interviewer created microstories from narrative and interview data. Stories were shared with their subjects, and with other patients, clinicians, researchers and the wider public. The study was carried out in hospital and in patients’ homes.ResultsNarrative analysis generated a rich data set which highlighted profound effects of pulmonary hypertension on identity, and demonstrated how the disease results in very marked personal change with ongoing and unpredictable requirement for adaptation. The novel methodology of microstory development proved to be an effective tool to summarise, communicate and explore the consequences of pulmonary hypertension and the clinical challenges of caring for patients with this illness.ConclusionsA holistic approach to treatment of chronic respiratory diseases such as pulmonary hypertension requires and benefits from explicit exploration of the full impacts of the illness. Narrative analysis and the novel approach of targeted microstory development can form a valuable component of the repertoire of approaches to effectively comprehend chronic disease and can also facilitate patient-focused discussion and interventions.

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

“…Ages ranged from 19 to 91 years. In all but one study, the samples were predominantly female 21 —likely reflecting the gender bias observed in PH. 22 Only three studies provided sufficient detail regarding sample ethnicity.…”

“…Participants reported experiencing PH-related symptoms a “ long ” time [ 27 , p. E19] prior to obtaining a diagnosis. 21 26 27 This period was characterised by a decline in physical functioning, QoL and emotional and social difficulties. 20 25 28 29 During this time, and thereafter, individuals expressed confusion over the cause of their experiences 28 —worries that were not necessarily reduced by the diagnosis, which was described as having posed “ more questions than it answers ”[22, p. 3].…”

“…A disparity in care between services was described, 6 specifically, between specialist centres and community services in terms of knowledge, treatments and approach to care. 21 28 31 Many participants expressed the need for greater collaboration between services. 6 21 26 27 …”

“… 28 31 32 Individuals spoke of pleading or taking it on themselves to explain the disease to staff. 21 27 …”

Caregiver reactions in pulmonary hypertension

“…Narrative analysis of creative writing regarding the experience of PH was investigated by Goddard et al (2017). Detailed unstructured narratives initiated from open-ended writing prompts aimed at building a "micro-story" about the patient's illness were collected from twelve patients attending a pulmonary vascular clinic in the United Kingdom.…”