Narrative medicine applications for patient identity and quality of life in ventricular assist device (VAD) patients

Slocum, Robert B.; Hart, Amanda; Guglin, Maya

doi:10.1016/j.hrtlng.2018.09.013

Cited by 9 publications

(4 citation statements)

References 13 publications

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“…Rather than telling a one-dimensional story about overcoming heart failure, the individuals we interviewed recounted a shared experience of recovering former selves and lifestyles, along with former meaning and purpose, where receiving an LVAD constituted the narrative “pivot point.” Our respondents described this recovery as facilitated by certain psychosocial factors, including maintaining a positive and adaptive approach to healing, as well as receiving assistance with self-care and social support from family or friends. These facilitators, particularly the importance of reclaiming aspects of one’s identity through self-reflection and social support, have likewise been noted by Slocum et al [24].…”

Section: Discussionmentioning

confidence: 74%

Suffering and Healing in the Context of LVAD Treatment

Kostick

Trejo

Blumenthal‐Barby

2019

JCM

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Background: Illness narratives with meaningful, competent and targeted content have been shown to provide useful guides for patient decision-making and have positive influences on health behaviors. The use of narratives in decision aids can confer a sense of structure, plot and context to illness experiences and help patients make treatment decisions that feel sensible, informed, and transparent. Aim: This paper presents narratives of suffering and healing from patients and their caregivers with advanced heart failure who engaged in decision-making regarding Left Ventricular Device Assist (LVAD) treatment. Methods: Narratives were collected from in-depth interviews with patients who accepted (n = 15) versus declined (n = 15) LVAD implant, LVAD candidates who had received education about LVAD and were in the process of making a decision (n = 15), and caregivers (family or significant others) of LVAD patients (n = 15). Results: Participants shared “restitution” narratives that most commonly conveyed a shift from pre-implant physical suffering and “daily hell,” fatigue so intense it “hurts,” along with emotional suffering from inability to engage with the world, to post-implant improvements in mobility and quality of life, including positivity and family support, adaptation on a “journey,” “getting one’s life back” and becoming “normal” again. Conclusion: For LVAD patients, other patients’ illness narratives can help to give meaning to their own illness and treatment experiences and to more accurately forecast treatment impacts on lifestyle and identity. For clinicians, patient narratives can enhance patient–practitioner communication and understanding by highlighting perspectives and values that structure patients’ clinical experiences.

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Section: Discussionmentioning

confidence: 74%

Suffering and Healing in the Context of LVAD Treatment

Kostick

Trejo

Blumenthal‐Barby

2019

JCM

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“…These results were influenced by patient demographic characteristics, disease-related factors, and clinical treatment factors. [46][47][48] Therefore, a multidisciplinary team comprising doctors, nurses, and rehabilitation therapists should collaborate to guide patients in functional exercises and provide professional psychological interventions, such as narrative care, 49 mindfulness-based meditation intervention, 50 cognitive behavioural therapy, 51 and music therapy. 52 More than half of the families included in this study exhibited a per capita monthly income of less than ¥5000, placing them at risk of being unable to resume work.…”

Section: Approach For Icu Transfer Patients and Their Spousesmentioning

confidence: 99%

The dyadic coping experience of ICU transfer patients and their spouses: A qualitative study

Gu,

Wang,

Pei

et al. 2023

Nursing in Critical Care

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BackgroundThe patient's spouse, in their role as the primary caregiver, assumes responsibility for the patient's care during the recovery process and provides the most robust social support. Previous research has primarily focused on the coping experiences and thoughts of individual ICU patients or caregivers, with limited attention afforded to the relationship between patients and their spouses.Aims and ObjectivesThis study aims to explore the dyadic coping experiences of ICU transfer patients and their spouses, with the goal of providing evidence to support the subsequent development of an individualized intervention program.Study DesignA qualitative study using a phenomenological research approach was undertaken. Purposive sampling was employed to select participants for face‐to‐face semi‐structured in‐depth interviews. The interviews took place at a tertiary general hospital in Nanjing from January 2023 to February 2023.Twelve ICU transfer patients and their twelve spouses were interviewed. The data were then summarized, and themes were derived using the Colaizzi 7‐step analysis method.FindingsA total of four themes and eleven sub‐themes emerged from the analysis. The identified themes include positive coping (actively seeking solutions, and facing challenges together), negative coping (avoiding problems, displaying overprotective behaviour, and bearing the burden alone), difficulties and challenges (a lack of information, high physical and psychological stress, and significant financial burden), and needs and suggestions (strengthening transition care, fostering increased intimacy, and reducing negative emotions).ConclusionBoth patients and spouses experience physical and psychological stress during the transfer from the ICU to the ward. Therefore, any intervention developed for caregivers should be designed in a dyadic manner. Increasing dyadic coping skills may represent an important area for future research and intervention.Relevance to Clinical PracticeThis study provides valuable evidence to inform the formulation of a comprehensive dual disease management plan for ICU transfer patients and their spouses.

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“…These studies reported benefits "including decreased pain, improved health status or well-being, increased vigor, better sleep quality, and decreased doctor-visit rates. Some of these studies show benefits of expressive writing in certain areas of study but not in others" [19]. Rawlings et al found that a writing intervention is acceptable for individuals with epilepsy or Psychogenic Nonepileptic Seizures (PNES).…”

Section: Narrative Medicine: a Communication Therapymentioning

confidence: 99%

Narrative medicine applications for patient identity and quality of life in ventricular assist device (VAD) patients

Cited by 9 publications

References 13 publications

Suffering and Healing in the Context of LVAD Treatment

Suffering and Healing in the Context of LVAD Treatment

The dyadic coping experience of ICU transfer patients and their spouses: A qualitative study

Breaking the spell: Narrative Medicine applications for Psychogenic Nonepileptic Seizures (PNES)

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