Patients’ Perception of Time in Palliative Care

Giuliani, Lucia; Piredda, Michela; Ghilardi, Giampaolo; Marinis, Maria Grazia De

doi:10.1097/njh.0000000000000179

Cited by 6 publications

(6 citation statements)

References 25 publications

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“…The way the couples coexist and embody shared time dimensions builds on findings from metasynthesis of qualitative literature on patients’ perception of time in palliative care. 53 This metasynthesis of research similarly revealed how terminally ill patients move toward perceptions of time that are less clock-based and more internalized and embodied as they make sense of living with a terminal illness. 53 This resonates also with literature that describes how individuals relate to time in new ways when they are chronically ill, a phenomenon that links to the ways they create meaning of their illness and experience self.…”

Section: Discussionmentioning

confidence: 93%

Patients with heart failure and their partners with chronic illness: interdependence in multiple dimensions of time

Nimmon¹,

Bates²,

Kimel³

et al. 2018

JMDH

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BackgroundInformal caregivers play a vital role in supporting patients with heart failure (HF). However, when both the HF patient and their long-term partner suffer from chronic illness, they may equally suffer from diminished quality of life and poor health outcomes. With the focus on this specific couple group as a dimension of the HF health care team, we explored this neglected component of supportive care.Materials and methodsFrom a large-scale Canadian multisite study, we analyzed the interview data of 13 HF patient–partner couples (26 participants). The sample consisted of patients with advanced HF and their long-term, live-in partners who also suffer from chronic illness.ResultsThe analysis highlighted the profound enmeshment of the couples. The couples’ interdependence was exemplified in the ways they synchronized their experience in shared dimensions of time and adapted their day-to-day routines to accommodate each other’s changing health status. Particularly significant was when both individuals were too ill to perform caregiving tasks, which resulted in the couples being in a highly fragile state.ConclusionWe conclude that the salience of this couple group’s oscillating health needs and their severe vulnerabilities need to be appreciated when designing and delivering HF team-based care.

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Section: Discussionmentioning

confidence: 93%

Patients with heart failure and their partners with chronic illness: interdependence in multiple dimensions of time

Nimmon¹,

Bates²,

Kimel³

et al. 2018

JMDH

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“…This appears, for some, to lead to disconnect between the temporal experiences of the patient and significant others. Since belonging occupations can be described as those which “tie the person to others through relationships,” disconnected temporality may disrupt the sense of belonging to one another (Essential Yeh & McColl, 2019, p. 112; Giuliani et al, 2015). Significant others who are predominantly situated in clock-based time may still focus on doing occupations, while others have adjusted their focus to being, belonging, and becoming occupations.…”

Section: Discussionmentioning

confidence: 99%

“…Temporality is described as more diverse than clock time, to include embodied and situated time, such as biological, relational, institutional, and so on (Ellingsen et al, 2013; Lövgren et al, 2010; Nimmon et al, 2018). The existential and embodied experiences of dying may cause dying people to experience temporality differently than those around them (Giuliani et al, 2015; Robertson, 2014). This divergent temporality may contribute to a sense of alienation, because the dying individual is living outside clock time, in which the majority of society, health care professionals, and perhaps their families operate (Giuliani et al, 2015).…”

Section: Introductionmentioning

confidence: 99%

“…The existential and embodied experiences of dying may cause dying people to experience temporality differently than those around them (Giuliani et al, 2015; Robertson, 2014). This divergent temporality may contribute to a sense of alienation, because the dying individual is living outside clock time, in which the majority of society, health care professionals, and perhaps their families operate (Giuliani et al, 2015).…”

Section: Introductionmentioning

confidence: 99%

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Understanding Experiences in Hospice: Exploring Temporal, Occupational, and Relational Dimensions Using Pictor Technique

et al. 2020

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Temporality, occupation, and relationships are identified as discrete factors that impact quality of life for individuals at the end of life and those around them. However, scholars, practitioners, and educators require insights regarding whether and how interactions between these factors shape this quality of life. This study is framed by an understanding that meaning is negotiated between people through social interaction and occupational engagement in temporal contexts. We conducted in-depth interviews with 9 patients and 10 family members, incorporating the Pictor visual elicitation technique. Analysis was conducted through an iterative process involving open and selective coding. Findings are described as three main processes: (a) experiences of temporal rupture, (b) diminished significance of clock time, and (c) shifts in occupational priorities. Participants’ perspectives may help carers understand how to foster positive temporal experiences and quality of life for patients and those who love them.

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“…On myös tutkimusta merkityksistä, joita fyysisellä ympäristöllä (Brereton ym. 2012;Slatyer, Pienaar, Williams, Proctor & Hewitt 2015;Porock, Pollock & Jurgens 2009), potilaan aikakäsi-tyksellä ja henkilöstön rakenteella (Giuliani, Piredda, Ghilardi & Marinis 2015;Roberts & Hurst 2012;Kayser-Jones ym. 2003) sekä toimintakäytännöillä, esimerkiksi tiedonsaannilla (Lundquist, Rasmussen & Axelsson 2011), on kuolevan hoidossa ja kuolemassa.…”

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Kuolema vuodeosastolla - kuolevan potilaan hyvän hoidon edellytykset

2018

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Tutkimuksessa terveyskeskuksen vuodeosastoa lähestytään kuoleman paikkana kysyen, minkälaiset edellytykset vuodeosasto tarjoaa kuolevan potilaan hyvälle hoidolle. Tutkimukseen teemahaastateltiin yhdeksää hoitajaa kahdeksalta terveyskeskuksen vuodeosastolta Etelä-Suomesta. Analyysimenetelmänä käytettiin aineistolähtöistä sisällönanalyysiä. Kuolevan potilaan hoidon keskeisiä tekijöitä vuodeosastolla ovat osaston tilalliset, ajalliset ja toiminnalliset rakenteet. Ne ilmenevät hoitajien kokemuksissa huomattavissa määrin haasteina mutta myös hyvinä käytäntöinä. Yksityisen tilan puutteen vuoksi kuolevien hoidolle sekä vainajan laittamisen ja hyvästelyn hetkille ei ole tarjota tilanteiden edellyttämiä olosuhteita. Hoitajan ajan niukkuuden vuoksi hoito kaventuu kuolevan ruumiin hoitamiseksi, eikä kiireettömään läsnäoloon ole välttämättä mahdollisuutta edes lähellä kuoleman hetkeä. Toiminnallisena haasteena ovat kuolemasta vaikeneminen sekä kuoleman viime vaiheisiin ajoittuvat potilaiden siirrot. Hyvä kuolevan hoito on luonteeltaan proaktiivista ja jäsentyy kuoleman tunnistamisen ja tunnustamisen sekä kuolemanpiirin luomisen vaiheisiin. Kuolevien hoitaminen on terveyskeskuksen vuodeosastojen tehtävä, mutta niiden ajalliset, tilalliset ja toiminnalliset rakenteet eivät vielä tue parhaalla mahdollisella tavalla tehtävästä huolehtimista. Tarvitaan avointa keskustelua ja aktiivista kehittämistyötä, jotta kuolevan hyvä hoito vuodeosastoilla voi toteutua. Dying on the ward – the preconditions for good care The aim of the study was to examine the primary health care centre ward as a place of end-of-life care and death. Altogether nine nurses from eight different primary health care wards from southern Finland were interviewed for the study. The data consisting of these thematic interviews were analyzed by using data-oriented content analysis methods. The results show that spatial, temporal and structural factors of the ward influence nurses' opportunities to take care of a dying patient. The caregiving of a dying patient, the act of conducting last offices and the last farewells of the grieving family members cannot always be offered the privacy they acquire. Due to time shortage, the care of a dying patient can diminish to taking care of a dying body. In addition, good care is challenged by the difficulty of openly discussing death and dying as well as care transitions prior to death. Good end-of-life care is characterized by pro-activeness and it involves three phases: recognizing and acknowledging dying and creating the realm of death. The results of this study show the importance of and need for both open discussion and development work so that the structures of the primary health care centre ward would actually support the good end-of-life care.

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Patients’ Perception of Time in Palliative Care

Cited by 6 publications

References 25 publications

Patients with heart failure and their partners with chronic illness: interdependence in multiple dimensions of time

Patients with heart failure and their partners with chronic illness: interdependence in multiple dimensions of time

Understanding Experiences in Hospice: Exploring Temporal, Occupational, and Relational Dimensions Using Pictor Technique

Kuolema vuodeosastolla - kuolevan potilaan hyvän hoidon edellytykset

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