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From bystander to enlisted carer - A qualitative study of the experiences of caregivers of patients attending follow-up after curative treatment for cancers in the pancreas, duodenum and bile duct

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@article{f20b1bf461e34292845e54000a76f056,
title = "From bystander to enlisted carer - A qualitative study of the experiences of caregivers of patients attending follow-up after curative treatment for cancers in the pancreas, duodenum and bile duct",
abstract = "PURPOSE: Caregivers of patients with cancer play an important role throughout the treatment trajectory. This can be challenging and might infer health and psychosocial problems. This may especially be the case in caregivers of patients with cancers that carry a high risk of recurrence such as cancers of the pancreas, duodenum and bile duct. This study therefore explored the experiences of caregivers of patients attending follow-up after completion of treatment with curative intent for cancers of the pancreas, duodenum and bile duct.METHODS: A qualitative study using semi-structured, individual interviews. Data were analysed using content analysis.RESULTS: Ten caregivers of patients attending follow-up after completed curative treatment for cancers of the pancreas, duodenum and bile duct in a specialized gastro-surgical center at a tertiary hospital in the Capital Region of Denmark participated. We identified three themes: {"}From bystander to enlisted carer{"}, inferring that caregivers felt enlisted as carers during treatment and follow-up, however without sufficient instruction or assessment of their needs. {"}Lonesome worrying{"} meaning that caregivers hid their feelings of concern and foreboding, and finally, {"}Keeping a stiff upper lip{"} indicating that caregivers outwardly maintained a positive face when interacting with the patient.CONCLUSION: Caregivers described taking on a substantial burden of care without feeling competent. They experienced distress and emotional isolation which affected their relationship with the patient and their mutual coping. The results indicate a need for health care professionals to facilitate reflection on the needs and roles of both patients and caregivers throughout the treatment trajectory.",
keywords = "Cancer care, Caregivers, Follow-up, Qualitative research, Surgery, Follow-Up Studies, Humans, Middle Aged, Neoplasm Recurrence, Local/nursing, Male, Duodenal Neoplasms/nursing, Caregivers/psychology, Pancreatic Neoplasms/nursing, Aged, 80 and over, Denmark, Adult, Female, Aged, Qualitative Research, Bile Duct Neoplasms/nursing, Adaptation, Psychological",
author = "Stine Gerhardt and Dengs{\o}, {Kristine Elberg} and Suzanne Herling and Thordis Thomsen",
note = "Copyright {\circledC} 2019 Elsevier Ltd. All rights reserved.",
year = "2020",
month = "2",
day = "1",
doi = "10.1016/j.ejon.2019.101717",
language = "English",
volume = "44",
pages = "101717",
journal = "European Journal of Oncology Nursing",
issn = "1462-3889",
publisher = "Churchill Livingstone",

}

RIS

TY - JOUR

T1 - From bystander to enlisted carer - A qualitative study of the experiences of caregivers of patients attending follow-up after curative treatment for cancers in the pancreas, duodenum and bile duct

AU - Gerhardt, Stine

AU - Dengsø, Kristine Elberg

AU - Herling, Suzanne

AU - Thomsen, Thordis

N1 - Copyright © 2019 Elsevier Ltd. All rights reserved.

PY - 2020/2/1

Y1 - 2020/2/1

N2 - PURPOSE: Caregivers of patients with cancer play an important role throughout the treatment trajectory. This can be challenging and might infer health and psychosocial problems. This may especially be the case in caregivers of patients with cancers that carry a high risk of recurrence such as cancers of the pancreas, duodenum and bile duct. This study therefore explored the experiences of caregivers of patients attending follow-up after completion of treatment with curative intent for cancers of the pancreas, duodenum and bile duct.METHODS: A qualitative study using semi-structured, individual interviews. Data were analysed using content analysis.RESULTS: Ten caregivers of patients attending follow-up after completed curative treatment for cancers of the pancreas, duodenum and bile duct in a specialized gastro-surgical center at a tertiary hospital in the Capital Region of Denmark participated. We identified three themes: "From bystander to enlisted carer", inferring that caregivers felt enlisted as carers during treatment and follow-up, however without sufficient instruction or assessment of their needs. "Lonesome worrying" meaning that caregivers hid their feelings of concern and foreboding, and finally, "Keeping a stiff upper lip" indicating that caregivers outwardly maintained a positive face when interacting with the patient.CONCLUSION: Caregivers described taking on a substantial burden of care without feeling competent. They experienced distress and emotional isolation which affected their relationship with the patient and their mutual coping. The results indicate a need for health care professionals to facilitate reflection on the needs and roles of both patients and caregivers throughout the treatment trajectory.

AB - PURPOSE: Caregivers of patients with cancer play an important role throughout the treatment trajectory. This can be challenging and might infer health and psychosocial problems. This may especially be the case in caregivers of patients with cancers that carry a high risk of recurrence such as cancers of the pancreas, duodenum and bile duct. This study therefore explored the experiences of caregivers of patients attending follow-up after completion of treatment with curative intent for cancers of the pancreas, duodenum and bile duct.METHODS: A qualitative study using semi-structured, individual interviews. Data were analysed using content analysis.RESULTS: Ten caregivers of patients attending follow-up after completed curative treatment for cancers of the pancreas, duodenum and bile duct in a specialized gastro-surgical center at a tertiary hospital in the Capital Region of Denmark participated. We identified three themes: "From bystander to enlisted carer", inferring that caregivers felt enlisted as carers during treatment and follow-up, however without sufficient instruction or assessment of their needs. "Lonesome worrying" meaning that caregivers hid their feelings of concern and foreboding, and finally, "Keeping a stiff upper lip" indicating that caregivers outwardly maintained a positive face when interacting with the patient.CONCLUSION: Caregivers described taking on a substantial burden of care without feeling competent. They experienced distress and emotional isolation which affected their relationship with the patient and their mutual coping. The results indicate a need for health care professionals to facilitate reflection on the needs and roles of both patients and caregivers throughout the treatment trajectory.

KW - Cancer care

KW - Caregivers

KW - Follow-up

KW - Qualitative research

KW - Surgery

KW - Follow-Up Studies

KW - Humans

KW - Middle Aged

KW - Neoplasm Recurrence, Local/nursing

KW - Male

KW - Duodenal Neoplasms/nursing

KW - Caregivers/psychology

KW - Pancreatic Neoplasms/nursing

KW - Aged, 80 and over

KW - Denmark

KW - Adult

KW - Female

KW - Aged

KW - Qualitative Research

KW - Bile Duct Neoplasms/nursing

KW - Adaptation, Psychological

UR - http://www.scopus.com/inward/record.url?scp=85078208984&partnerID=8YFLogxK

U2 - 10.1016/j.ejon.2019.101717

DO - 10.1016/j.ejon.2019.101717

M3 - Journal article

VL - 44

SP - 101717

JO - European Journal of Oncology Nursing

JF - European Journal of Oncology Nursing

SN - 1462-3889

M1 - 101717

ER -

ID: 59133844