Goed begrepen. Informeren van en beslissen met patiënten met beperkte gezondheidsvaardigheden in de palliatieve zorg in ziekenhuizen.

29% of Dutch people have limited health literacy (LHL) and 13,5 % (> 16) are semiliterate. Palliative care poses high demands on professionals regarding appropriate and effective communication and decision-making. Limited health literacy hinders the participation of patients in SDM. Many healthcare professionals insufficiently recognize low literacy and LHL and do not adjust their communication accordingly. In secondary care, the medical specialist introduces the palliative phase to the patient and his relatives and discusses options. Professionals must be able to identify the health literacy skills of the patient and his family and to adapt information provision and decision-making to the needs of the patient.

OBJECTIVE
To improve information provision and decision-making with LHL patients in secondary palliative care. We wish to contribute to insights into the needs (medical, psychological, social and spiritual) of these patients and the strategies and experiences of professionals in clinical practice, and will develop and implement a toolkit for medical specialists and nurses. We present the toolkit in a digital learning environment. In addition we also focus on recommendations to strengthen the cooperation between primary and secondary care.
 

RESEARCH QUESTIONS

• What are the experiences and needs of LHL patients, their relatives, and health care professionals regarding information provision and decision-making in hospital-based palliative care?
• How do information provision and decision-making with LHL patients in palliative hospital-based care currently take place?
• What communication strategies and organisational prerequisites, including cooperation with primary care, are useful for improving the information provision and decision-making in hospital-based palliative care for LHL patients?
• To what extent does the toolkit contribute to greater satisfaction of, better understanding of, and better decision-making by LHL patients, their relatives, and medical professionals in hospital-based palliative care?

RESULTS

• In 2020 insights have been gained into the experiences, needs, and current information provision and decision-making of LHL patients, their relatives, and healthcare professionals and into useful strategies and organisational prerequisites for improving these processes.
• In 2020 health care professionals in hospital-based palliative care have access to a toolkit to support their information provision and decision-making with LHL patients and their relatives. The toolkit has been developed with input from patients, relatives, teachers, and health care professionals.
• The toolkit has been implemented in two general and three university hospitals. The digital learning environment includes a serious game which has been used by at least 50 health care professionals in the collaborating hospitals.
• The research results and the toolkit are included in quality assurance tools of the project’s partners and medical curricula, vocational and postgraduate education pathways and guidelines.

TARGET GROUP
The project targets doctors and nurses in hospitals who inform patients about the start of the palliative phase and discuss options regarding care and treatment in secondary and primary care. We focus on oncology and pulmonary care because of the high prevalence of cancer and COPD among LHL people.

STRATEGY

• Research (interviews and video recordings of outpatient consultations) with LHL patients and healthcare professionals on experiences with and wishes for information provision and decision-making, communication strategies, and organizational prerequisites for adequate care.
• Development of video vignettes and recommendations for the organization of palliative care.
• Evaluation of feasibility of communication strategies and recommendations.
• Development of a toolkit and a digital learning environment in close cooperation with LHL patients, their relatives, teachers, and primary and secondary care professionals. The latter will also contain virtual patients to practice communication skills.
• Implementation and evaluated in 5 hospitals.

PATIENT PARTICIPATION
Patient representatives in the project group include an expert-by-experience of the ABC Foundation), a programme leader of ROC West-Brabant (teaching semiliterate adults), and a member of Huis voor de Zorg (House of Care – representing patient organizations). Lung Alliance Netherlands (LAN) represents the Lung Fund patients’ organisation. In addition, we set up an implementation group with representatives from patients, health care, education, and each participating hospital that will be consulted at different stages.

Partners include
3 university MCs and 2 general hospitals; centres of expertise of palliative care; three consortia for palliative care; educational institutions, Fibula Foundation, IKNL, LAN, and a GP. All play a role to align or integrate the toolkit in the quality framework palliative care and other existing quality instruments.