Supporting carers: health care professionals in need of system improvements and education - a qualitative study. 2019

Ingebrigt Røen, and Hans Stifoss-Hanssen, and Gunn Grande, and Stein Kaasa, and Kari Sand, and Anne Kari Knudsen
European Palliative Care Research Centre (PRC), Department of Clinical and Molecular Medicine, Norwegian University of Science and Technology (NTNU), 4. etg. Kunnskapssenteret vest, St. Olavs hospital, 7006, Trondheim, Norway. ingebrigt.roen@stolav.no.

BACKGROUND Health care professionals should prevent and relieve suffering in carers of patients with advanced cancer. Despite known positive effects of systematic carer support, carers still do not receive sufficient support. Carers have reported to be less satisfied with coordination of care and involvement of the family in treatment and care decisions than patients. In a rural district of Mid-Norway, cancer palliative care services across specialist and community care were developed. Participants' experiences and opinions were investigated as part of this development process. METHODS The aim of this qualitative study was to explore and describe health care professionals' experiences with carer support from their own perspective. Data were collected in focus groups. Purposeful sampling guided the inclusion. Six groups were formed with 21 professionals. The discussions were audio-recorded, transcribed, and analyzed using systematic text condensation. RESULTS In the analyzis of the focus group discussions, ten categories emerged from the exploration of health care professionals' carer support, assessment of needs, and factors hampering carer support: 1) dependent on profession, role, and context, 2) personal relationship, 3) personal skills and competence, 4) adjusted to the stage of the disease, 5) informal assessment of carers' needs, 6) lack of education 7) lack of systems for carer consultations, 8) lack of systems for documentation, 9) lack of systems for involving GPs, and 10) lack of systematic spiritual care. CONCLUSIONS Health care professionals built a personal relationship with the carers as early as possible, to facilitate carer support throughout the disease trajectory. Systematic carer support was hampered by lack of education and system insufficiencies. Organizational changes were needed, including 1) education in carer support, communication, and spiritual care, 2) use of standardized care pathways, including systematic carer needs assessment, 3) systematic involvement of general practitioners, and 4) a system for documentation of clinical work with carers.

UI MeSH Term Description Entries
D008297 Male Males
D008875 Middle Aged An adult aged 45 - 64 years. Middle Age
D009664 Norway A country located in northern Europe, bordering the North Sea and the Atlantic Ocean, west of Sweden. The capital is Oslo. Kingdom of Norway
D003695 Delivery of Health Care The concept concerned with all aspects of providing and distributing health services to a patient population. Delivery of Dental Care,Health Care,Health Care Delivery,Health Care Systems,Community-Based Distribution,Contraceptive Distribution,Delivery of Healthcare,Dental Care Delivery,Distribution, Non-Clinical,Distribution, Nonclinical,Distributional Activities,Healthcare,Healthcare Delivery,Healthcare Systems,Non-Clinical Distribution,Nonclinical Distribution,Activities, Distributional,Activity, Distributional,Care, Health,Community Based Distribution,Community-Based Distributions,Contraceptive Distributions,Deliveries, Healthcare,Delivery, Dental Care,Delivery, Health Care,Delivery, Healthcare,Distribution, Community-Based,Distribution, Contraceptive,Distribution, Non Clinical,Distributional Activity,Distributions, Community-Based,Distributions, Contraceptive,Distributions, Non-Clinical,Distributions, Nonclinical,Health Care System,Healthcare Deliveries,Healthcare System,Non Clinical Distribution,Non-Clinical Distributions,Nonclinical Distributions,System, Health Care,System, Healthcare,Systems, Health Care,Systems, Healthcare
D004493 Education Acquisition of knowledge as a result of instruction in a formal course of study. Literacy Programs,Training Programs,Activities, Educational,Educational Activities,Workshops,Activity, Educational,Educational Activity,Literacy Program,Program, Literacy,Program, Training,Programs, Literacy,Programs, Training,Training Program,Workshop
D005260 Female Females
D006282 Health Personnel Men and women working in the provision of health services, whether as individual practitioners or employees of health institutions and programs, whether or not professionally trained, and whether or not subject to public regulation. (From A Discursive Dictionary of Health Care, 1976) Health Care Professionals,Health Care Providers,Healthcare Providers,Healthcare Workers,Health Care Professional,Health Care Provider,Healthcare Provider,Healthcare Worker,Personnel, Health,Professional, Health Care,Provider, Health Care,Provider, Healthcare
D006801 Humans Members of the species Homo sapiens. Homo sapiens,Man (Taxonomy),Human,Man, Modern,Modern Man
D000328 Adult A person having attained full growth or maturity. Adults are of 19 through 44 years of age. For a person between 19 and 24 years of age, YOUNG ADULT is available. Adults
D000368 Aged A person 65 years of age or older. For a person older than 79 years, AGED, 80 AND OVER is available. Elderly

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