TY - JOUR

T1 - Relatives' level of satisfaction with advanced cancer care in Greenland

T2 - a mixed methods study

AU - Augustussen, Mikaela

AU - Hounsgaard, Lise

AU - Pedersen, Michael Lynge

AU - Sjøgren, Per

AU - Timm, Helle

PY - 2017

Y1 - 2017

N2 - 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.

AB - 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.

KW - Adult

KW - Arctic Regions

KW - Cross-Sectional Studies

KW - Decision Making

KW - Family/psychology

KW - Female

KW - Greenland

KW - Humans

KW - Interviews as Topic

KW - Inuits

KW - Male

KW - Middle Aged

KW - Neoplasms/therapy

KW - Palliative Care/psychology

KW - Patient Participation

KW - Personal Satisfaction

KW - Prospective Studies

KW - Time-to-Treatment

U2 - 10.1080/22423982.2017.1335148

DO - 10.1080/22423982.2017.1335148

M3 - Journal article

C2 - 28613119

VL - 76

JO - International Journal of Circumpolar Health

JF - International Journal of Circumpolar Health

SN - 1239-9736

M1 - 1335148

ER -