Clinical presentation of existential distress in pulmonary arterial hypertension

Lo, Chris; Sarker, Tasmie; Canning, Orla; Martin, Vanessa; McCarthy, Mary; Granton, John; Tan, Adrienne

doi:10.1080/24745332.2018.1507614

Cited by 6 publications

(24 citation statements)

References 28 publications

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“… 22 Only three studies provided sufficient detail regarding sample ethnicity. 17 23 24 Participants had been diagnosed with PH ranging from <1 year to 24 years. Ten studies failed to report medical information concerning participant’s functional class—this is important given that experiences seemed to differ depending on disease-specific issues.…”

Section: Resultsmentioning

confidence: 99%

“…Ten studies failed to report medical information concerning participant’s functional class—this is important given that experiences seemed to differ depending on disease-specific issues. 17 25 The majority (n=14) of studies used research interviews for data collection, whereas greater variation of analytical methods was used ( table 3 ).…”

Section: Resultsmentioning

confidence: 99%

“…Participants described a number of worries associated with their treatment, such as, whether it was effective 20 and if so for how long, 36 potential risks, 31 what other options are available 29 31 36 and the wait to receive treatment. 17 Visible treatments could be a source of ‘ social stigma’ [27, 38, p. 456], leaving participants feeling ‘self-conscious’ [33, p. 4].…”

Section: Resultsmentioning

confidence: 99%

“…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]. One women wondered if her death would make it “ easier ” due to the impact of PH on her family [17, p. 4].…”

Section: Resultsmentioning

confidence: 99%

“…A comprehensive search of four databases was performed in January 2020, which was repeated in May 2020 prior to submission: Web of Science, PubMed, PsycINFO and Cochrane Library. The references of suitable articles were searched for relevant studies: this helped to identify one additional article 17 ( tables 1 and 2 ). Search terms were informed by author’s experience of previously published articles on PH.…”

Section: Methodsmentioning

confidence: 99%

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

et al. 2020

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ObjectivesPulmonary hypertension is a life-shortening disease that has a considerable impact on quality of life. Improving our understanding of how individuals are affected and cope with the disease will help to improve services and outcomes. This review synthesises the published qualitative research that has listened to adults discuss their experiences of living with the disease.DesignA comprehensive systematic search of four databases was conducted in May 2020: Web of Science, PubMed, PsycINFO and Cochrane Library. Suitable studies were evaluated using the Critical Appraisal Skills programme. Findings from the studies were extracted and subjected to a thematic synthesis.ResultsNineteen articles were identified reflecting the experiences of over 1900 individuals impacted by pulmonary hypertension from Europe, North and South America and Asia. Ten studies did not report participant’s WHO functional class of pulmonary hypertension, which resulted in comparing experiences between different severity difficult. All studies met the majority of the quality assessment items. Six descriptive themes emerged discussing participant’s experiences of diagnosis, treatment, prognosis, healthcare professionals, impact and coping with pulmonary hypertension. Four higher order analytical themes were developed from the descriptive themes, reflecting: (i) uncertainties and anxiety that participants encountered related to pulmonary hypertension; (ii) lack of recognition of the impact of the condition; (iii) frustration at the paucity of awareness of pulmonary hypertension in society and healthcare settings and (iv) participant’s accounts of transitioning through different stages of living with the disease.ConclusionsThese findings form the first synthesis of experiences of life in individuals impacted by pulmonary hypertension and illustrate the multifaceted impact of the condition. The voices of numerous groups are missing from the literature highlighting the need for additional research. The results have implications for clinical practice emphasising the role of educational and psychological therapies to support those with the disease.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

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

et al. 2020

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Conversational avoidance during existential interviews with patients with progressive illness

Martin

Sarker

Slusarek

et al. 2020

Psychology, Health & Medicine

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Integrated Review of Psychosocial and Behavioral Health Assessments and Interventions in Pulmonary Hypertension

et al. 2020

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Background The medical management of patients with pulmonary hypertension (PH) has advanced, with few evidence-based recommendations about psychosocial and behavioral health interventions. There is also a lack of comprehensive understanding of PH psychosocial and behavioral health needs. Some psychosocial and behavioral health interventions have been tested; however, there is a gap in the systematic evaluation of nonpharmacological complementary approaches to augment PH management when addressing psychosocial and behavioral health needs. Objectives The objectives are to explore psychosocial and behavioral health needs and describe psychosocial and behavioral health interventions for patients with PH. Methods We conducted an integrative systematic review of publications between January 1, 2010, and January 31, 2020, obtained from electronic databases: EMBASE, PubMed, Cumulative Index of Nursing and Allied Health Literature, Cochrane, PsycINFO, and Web of Science. The literature searches focused on empirical literature reporting psychosocial needs and psychosocial and behavioral health interventions for adult PH patients. We included peer-reviewed studies published in English. Search terms used in the study were: “hypertension,” “pulmonary hypertension,” “psychosocial,” “depression,” “anxiety,” “quality of life,” “behavioral health,” “self-management,” “psychosocial intervention,” and “psychological distress.” Excluded were opinion and discussion publications, reviews, non-PH populations, and pediatric articles. We used the constant comparison method to guide the synthesis of reports applying the Joanna Briggs quality assessment guidelines. Results A total of 44 articles meeting the criteria were included for final consideration. We conducted an integrative systematic review of 27 quantitative studies, narrative synthesis of 10 qualitative studies, and 7 psychosocial and behavioral health intervention studies. PH patients reported psychosocial needs, such as financial, social connections, sexual health, and palliative care needs, as well as levels of psychological distress symptoms. The results from both quantitative and qualitative studies revealed similar overarching psychosocial and behavioral health conceptual categories. Patients described their ongoing needs in PH management by relying on their psychosocial and behavioral health capabilities to adjust to changes at each stage of disease progression. Patients had high levels of psychosocial and behavioral health needs requiring interventions beyond medical treatment. Discussion Pilot studies testing psychosocial and behavioral health interventions reported improvement in levels of anxiety and depression and health-related quality of life. Larger scale studies are needed to advance this knowledge. Psychosocial and behavioral health interventions with cognitive-guided foci have the potential of meeting these unmet needs.

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Clinical presentation of existential distress in pulmonary arterial hypertension

Cited by 6 publications

References 28 publications

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

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

Conversational avoidance during existential interviews with patients with progressive illness

Integrated Review of Psychosocial and Behavioral Health Assessments and Interventions in Pulmonary Hypertension

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