Living with outpatient management as spouse to intensively treated acute leukemia patients

Lene Østergaard Jepsen*, Lone Smidstrup Friis, Dorte Gilså Hansen, Claus Werenberg Marcher, Mette Terp Høybye

*Kontaktforfatter for dette arbejde

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Resumé

BACKGROUND: Spouses have a key position in the treatment of patients with acute leukemia (AL) who are increasingly managed in an outpatient setting. Patients live at home but appear at the hospital every second day for follow-up visits. Patients must adhere to specific precautions due to an impaired immune system, which challenges and influence the life of the whole family. This qualitative study, based on individual and group interviews with spouses to AL patients in curative intended treatment, elucidates how the intense and substantial caregiver role affects the everyday lives of spouses to AL patients in curative intended treatment.

METHODS: Qualitative semi-structured group interviews (n = 6) and individual interviews (n = 5) with spouses to AL patients were conducted at different time points during the whole course of treatment. Theories of everyday life served as the theoretical framework.

RESULTS: The spouses described their life as a constant state of vigilance and attention as a consequence of the responsibility they felt arising from the treatment in the outpatient setting. These made them experience their role as a burden. The social life of the spouses and the families suffered substantially due to the precautions that were instated in the home. However, many experienced that relations in the family were developed positively.

CONCLUSIONS: Close relatives experience additional psychosocial burdens instigated by the outpatient management regimens. This is important knowledge for the health care system to include in future development of AL outpatient settings, to prioritize and support offers to the relatives that recognize their sense of burden. This could apply not only to relatives of AL patients but to the relatives of other severely ill patients as well.

OriginalsprogEngelsk
Artikelnummere0216821
TidsskriftPLOS ONE
Vol/bind14
Udgave nummer5
Antal sider11
ISSN1932-6203
DOI
StatusUdgivet - 1. maj 2019

Fingeraftryk

spouses
Immune system
leukemia
Spouses
Health care
Leukemia
Outpatients
Interviews
interviews
Caregivers
Immune System
family relations
health care workers
Delivery of Health Care
health services
immune system

Citer dette

Jepsen, Lene Østergaard ; Friis, Lone Smidstrup ; Hansen, Dorte Gilså ; Marcher, Claus Werenberg ; Høybye, Mette Terp. / Living with outpatient management as spouse to intensively treated acute leukemia patients. I: PLOS ONE. 2019 ; Bind 14, Nr. 5.
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title = "Living with outpatient management as spouse to intensively treated acute leukemia patients",
abstract = "BACKGROUND: Spouses have a key position in the treatment of patients with acute leukemia (AL) who are increasingly managed in an outpatient setting. Patients live at home but appear at the hospital every second day for follow-up visits. Patients must adhere to specific precautions due to an impaired immune system, which challenges and influence the life of the whole family. This qualitative study, based on individual and group interviews with spouses to AL patients in curative intended treatment, elucidates how the intense and substantial caregiver role affects the everyday lives of spouses to AL patients in curative intended treatment.METHODS: Qualitative semi-structured group interviews (n = 6) and individual interviews (n = 5) with spouses to AL patients were conducted at different time points during the whole course of treatment. Theories of everyday life served as the theoretical framework.RESULTS: The spouses described their life as a constant state of vigilance and attention as a consequence of the responsibility they felt arising from the treatment in the outpatient setting. These made them experience their role as a burden. The social life of the spouses and the families suffered substantially due to the precautions that were instated in the home. However, many experienced that relations in the family were developed positively.CONCLUSIONS: Close relatives experience additional psychosocial burdens instigated by the outpatient management regimens. This is important knowledge for the health care system to include in future development of AL outpatient settings, to prioritize and support offers to the relatives that recognize their sense of burden. This could apply not only to relatives of AL patients but to the relatives of other severely ill patients as well.",
author = "Jepsen, {Lene {\O}stergaard} and Friis, {Lone Smidstrup} and Hansen, {Dorte Gils{\aa}} and Marcher, {Claus Werenberg} and H{\o}ybye, {Mette Terp}",
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Living with outpatient management as spouse to intensively treated acute leukemia patients. / Jepsen, Lene Østergaard; Friis, Lone Smidstrup; Hansen, Dorte Gilså; Marcher, Claus Werenberg; Høybye, Mette Terp.

I: PLOS ONE, Bind 14, Nr. 5, e0216821, 01.05.2019.

Publikation: Bidrag til tidsskriftTidsskriftartikelForskningpeer review

TY - JOUR

T1 - Living with outpatient management as spouse to intensively treated acute leukemia patients

AU - Jepsen, Lene Østergaard

AU - Friis, Lone Smidstrup

AU - Hansen, Dorte Gilså

AU - Marcher, Claus Werenberg

AU - Høybye, Mette Terp

PY - 2019/5/1

Y1 - 2019/5/1

N2 - BACKGROUND: Spouses have a key position in the treatment of patients with acute leukemia (AL) who are increasingly managed in an outpatient setting. Patients live at home but appear at the hospital every second day for follow-up visits. Patients must adhere to specific precautions due to an impaired immune system, which challenges and influence the life of the whole family. This qualitative study, based on individual and group interviews with spouses to AL patients in curative intended treatment, elucidates how the intense and substantial caregiver role affects the everyday lives of spouses to AL patients in curative intended treatment.METHODS: Qualitative semi-structured group interviews (n = 6) and individual interviews (n = 5) with spouses to AL patients were conducted at different time points during the whole course of treatment. Theories of everyday life served as the theoretical framework.RESULTS: The spouses described their life as a constant state of vigilance and attention as a consequence of the responsibility they felt arising from the treatment in the outpatient setting. These made them experience their role as a burden. The social life of the spouses and the families suffered substantially due to the precautions that were instated in the home. However, many experienced that relations in the family were developed positively.CONCLUSIONS: Close relatives experience additional psychosocial burdens instigated by the outpatient management regimens. This is important knowledge for the health care system to include in future development of AL outpatient settings, to prioritize and support offers to the relatives that recognize their sense of burden. This could apply not only to relatives of AL patients but to the relatives of other severely ill patients as well.

AB - BACKGROUND: Spouses have a key position in the treatment of patients with acute leukemia (AL) who are increasingly managed in an outpatient setting. Patients live at home but appear at the hospital every second day for follow-up visits. Patients must adhere to specific precautions due to an impaired immune system, which challenges and influence the life of the whole family. This qualitative study, based on individual and group interviews with spouses to AL patients in curative intended treatment, elucidates how the intense and substantial caregiver role affects the everyday lives of spouses to AL patients in curative intended treatment.METHODS: Qualitative semi-structured group interviews (n = 6) and individual interviews (n = 5) with spouses to AL patients were conducted at different time points during the whole course of treatment. Theories of everyday life served as the theoretical framework.RESULTS: The spouses described their life as a constant state of vigilance and attention as a consequence of the responsibility they felt arising from the treatment in the outpatient setting. These made them experience their role as a burden. The social life of the spouses and the families suffered substantially due to the precautions that were instated in the home. However, many experienced that relations in the family were developed positively.CONCLUSIONS: Close relatives experience additional psychosocial burdens instigated by the outpatient management regimens. This is important knowledge for the health care system to include in future development of AL outpatient settings, to prioritize and support offers to the relatives that recognize their sense of burden. This could apply not only to relatives of AL patients but to the relatives of other severely ill patients as well.

U2 - 10.1371/journal.pone.0216821

DO - 10.1371/journal.pone.0216821

M3 - Journal article

VL - 14

JO - P L o S One

JF - P L o S One

SN - 1932-6203

IS - 5

M1 - e0216821

ER -