Relatives' level of satisfaction with advanced cancer care in Greenland:a mixed methods study

Palliative cancer care in Greenland is provided by health professionals at local level, the national Queen Ingrid's Hospital and at Rigshospitalet in Denmark. To improve and develop care for relatives of patients with advanced cancer, we conducted a mixed method study examining relatives'...

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Published in:International Journal of Circumpolar Health
Main Authors: Augustussen, Mikaela, Hounsgaard, Lise, Pedersen, Michael Lynge, Sjøgren, Per, Timm, Helle
Format: Article in Journal/Newspaper
Language:English
Published: 2017
Subjects:
Online Access:https://curis.ku.dk/portal/da/publications/relatives-level-of-satisfaction-with-advanced-cancer-care-in-greenland(1c6e3cba-d794-4d94-8762-2126ccc20019).html
https://doi.org/10.1080/22423982.2017.1335148
https://curis.ku.dk/ws/files/195158344/Relatives_level_of_satisfaction_with_advanced_cancer_care_in_Greenland_a_mixed_methods_study.pdf
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spelling ftcopenhagenunip:oai:pure.atira.dk:publications/1c6e3cba-d794-4d94-8762-2126ccc20019 2024-04-28T08:12:28+00:00 Relatives' level of satisfaction with advanced cancer care in Greenland:a mixed methods study Augustussen, Mikaela Hounsgaard, Lise Pedersen, Michael Lynge Sjøgren, Per Timm, Helle 2017 application/pdf https://curis.ku.dk/portal/da/publications/relatives-level-of-satisfaction-with-advanced-cancer-care-in-greenland(1c6e3cba-d794-4d94-8762-2126ccc20019).html https://doi.org/10.1080/22423982.2017.1335148 https://curis.ku.dk/ws/files/195158344/Relatives_level_of_satisfaction_with_advanced_cancer_care_in_Greenland_a_mixed_methods_study.pdf eng eng info:eu-repo/semantics/openAccess Augustussen , M , Hounsgaard , L , Pedersen , M L , Sjøgren , P & Timm , H 2017 , ' Relatives' level of satisfaction with advanced cancer care in Greenland : a mixed methods study ' , International Journal of Circumpolar Health , vol. 76 , 1335148 . https://doi.org/10.1080/22423982.2017.1335148 Adult Arctic Regions Cross-Sectional Studies Decision Making Family/psychology Female Greenland Humans Interviews as Topic Inuits Male Middle Aged Neoplasms/therapy Palliative Care/psychology Patient Participation Personal Satisfaction Prospective Studies Time-to-Treatment article 2017 ftcopenhagenunip https://doi.org/10.1080/22423982.2017.1335148 2024-04-11T00:22:38Z Palliative cancer care in Greenland is provided by health professionals at local level, the national Queen Ingrid's Hospital and at Rigshospitalet in Denmark. To improve and develop care for relatives of patients with advanced cancer, we conducted a mixed method study examining relatives' level of satisfaction with care and treatment and their current main concerns. The aim was to investigate relatives' level of satisfaction with advanced cancer care and bring to light their current main concerns. The FAMCARE-20 questionnaire was translated to Greenlandic and pilot tested. The questionnaire was supplemented by open-ended questions about relative's current main concerns and analyzed with a phenomenological hermeneutical approach. Greenlandic patients with advanced cancer who were previously participating in a prospective study were asked if their closest adult relative would participate in the study. Telephone interviews were conducted and relatives responded to the questionnaire. A total of thirty-two relatives were contacted by telephone and 30 (94%) completed the FAMCARE-20 questionnaire and answered open-ended questions. The highest rate of satisfaction was with the availability of a hospital bed (66%) and relatives were the most dissatisfied with the lack of inclusion in decision making related to treatment and care (71%) and the length of time required to diagnose cancer (70%). Responses to the open-ended questions revealed that relatives faced challenges in gaining access to information from health professionals. They experienced a lack of security, worries about the future and a lack of support at home. The study showed a substantial level of dissatisfaction among relatives of patients with advanced cancer. We strongly recommend a focus on psychosocial care, more access to information and to include relatives in decision making and in the future planning of palliative care services. An assessment of relatives' needs is essential to develop an adequate palliative care in a range of settings. Article in Journal/Newspaper Arctic Circumpolar Health Greenland greenlandic International Journal of Circumpolar Health inuits University of Copenhagen: Research International Journal of Circumpolar Health 76 1 1335148
institution Open Polar
collection University of Copenhagen: Research
op_collection_id ftcopenhagenunip
language English
topic Adult
Arctic Regions
Cross-Sectional Studies
Decision Making
Family/psychology
Female
Greenland
Humans
Interviews as Topic
Inuits
Male
Middle Aged
Neoplasms/therapy
Palliative Care/psychology
Patient Participation
Personal Satisfaction
Prospective Studies
Time-to-Treatment
spellingShingle Adult
Arctic Regions
Cross-Sectional Studies
Decision Making
Family/psychology
Female
Greenland
Humans
Interviews as Topic
Inuits
Male
Middle Aged
Neoplasms/therapy
Palliative Care/psychology
Patient Participation
Personal Satisfaction
Prospective Studies
Time-to-Treatment
Augustussen, Mikaela
Hounsgaard, Lise
Pedersen, Michael Lynge
Sjøgren, Per
Timm, Helle
Relatives' level of satisfaction with advanced cancer care in Greenland:a mixed methods study
topic_facet Adult
Arctic Regions
Cross-Sectional Studies
Decision Making
Family/psychology
Female
Greenland
Humans
Interviews as Topic
Inuits
Male
Middle Aged
Neoplasms/therapy
Palliative Care/psychology
Patient Participation
Personal Satisfaction
Prospective Studies
Time-to-Treatment
description Palliative cancer care in Greenland is provided by health professionals at local level, the national Queen Ingrid's Hospital and at Rigshospitalet in Denmark. To improve and develop care for relatives of patients with advanced cancer, we conducted a mixed method study examining relatives' level of satisfaction with care and treatment and their current main concerns. The aim was to investigate relatives' level of satisfaction with advanced cancer care and bring to light their current main concerns. The FAMCARE-20 questionnaire was translated to Greenlandic and pilot tested. The questionnaire was supplemented by open-ended questions about relative's current main concerns and analyzed with a phenomenological hermeneutical approach. Greenlandic patients with advanced cancer who were previously participating in a prospective study were asked if their closest adult relative would participate in the study. Telephone interviews were conducted and relatives responded to the questionnaire. A total of thirty-two relatives were contacted by telephone and 30 (94%) completed the FAMCARE-20 questionnaire and answered open-ended questions. The highest rate of satisfaction was with the availability of a hospital bed (66%) and relatives were the most dissatisfied with the lack of inclusion in decision making related to treatment and care (71%) and the length of time required to diagnose cancer (70%). Responses to the open-ended questions revealed that relatives faced challenges in gaining access to information from health professionals. They experienced a lack of security, worries about the future and a lack of support at home. The study showed a substantial level of dissatisfaction among relatives of patients with advanced cancer. We strongly recommend a focus on psychosocial care, more access to information and to include relatives in decision making and in the future planning of palliative care services. An assessment of relatives' needs is essential to develop an adequate palliative care in a range of settings.
format Article in Journal/Newspaper
author Augustussen, Mikaela
Hounsgaard, Lise
Pedersen, Michael Lynge
Sjøgren, Per
Timm, Helle
author_facet Augustussen, Mikaela
Hounsgaard, Lise
Pedersen, Michael Lynge
Sjøgren, Per
Timm, Helle
author_sort Augustussen, Mikaela
title Relatives' level of satisfaction with advanced cancer care in Greenland:a mixed methods study
title_short Relatives' level of satisfaction with advanced cancer care in Greenland:a mixed methods study
title_full Relatives' level of satisfaction with advanced cancer care in Greenland:a mixed methods study
title_fullStr Relatives' level of satisfaction with advanced cancer care in Greenland:a mixed methods study
title_full_unstemmed Relatives' level of satisfaction with advanced cancer care in Greenland:a mixed methods study
title_sort relatives' level of satisfaction with advanced cancer care in greenland:a mixed methods study
publishDate 2017
url https://curis.ku.dk/portal/da/publications/relatives-level-of-satisfaction-with-advanced-cancer-care-in-greenland(1c6e3cba-d794-4d94-8762-2126ccc20019).html
https://doi.org/10.1080/22423982.2017.1335148
https://curis.ku.dk/ws/files/195158344/Relatives_level_of_satisfaction_with_advanced_cancer_care_in_Greenland_a_mixed_methods_study.pdf
genre Arctic
Circumpolar Health
Greenland
greenlandic
International Journal of Circumpolar Health
inuits
genre_facet Arctic
Circumpolar Health
Greenland
greenlandic
International Journal of Circumpolar Health
inuits
op_source Augustussen , M , Hounsgaard , L , Pedersen , M L , Sjøgren , P & Timm , H 2017 , ' Relatives' level of satisfaction with advanced cancer care in Greenland : a mixed methods study ' , International Journal of Circumpolar Health , vol. 76 , 1335148 . https://doi.org/10.1080/22423982.2017.1335148
op_rights info:eu-repo/semantics/openAccess
op_doi https://doi.org/10.1080/22423982.2017.1335148
container_title International Journal of Circumpolar Health
container_volume 76
container_issue 1
container_start_page 1335148
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