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'...
Published in: | International Journal of Circumpolar Health |
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Language: | English |
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2017
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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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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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1797579307551293440 |