Background: Hospices provide multidimensional care. In the Netherlands, patients with <3 months estimated life expectancy have access to hospice care. Insight into patients admitted to hospices and the care provided is lacking. In preparation for a national multicenter study, a pilot study was performed. Objective: The primary objective was to test the appropriateness of the study procedures and the availability of hospice patient records (HPRs), and patient and care characteristics. Method: A cross-sectional pilot study was performed using a descriptive exploratory design. Sixteen hospices were invited to participate, and HPRs from 8 deceased patients per hospice were selected. Data were collected using self-developed electronic case report forms. Outcomes: (1). Appropriateness of procedures: availability of HPRs and identified barriers and strategies.(2) Availability of patient and care characteristics in HPRs. Results: In total, 104 HPRs of patients from 13 hospices were enrolled. Various types of HPRs were found with different availabilities: nurses' records were most available (98%) compared to volunteers' records (62%). Overarching barriers were as follows: ethical issues, lack of knowledge, and lack of communication. Information about the illness was most available (97%), whereas descriptions of experienced symptoms were least available (10%). Conclusion: Collecting HPRs is difficult and timeconsuming. Specifically, data from separate records of home care nurses and general practitioners were difficult to come by. Patient and care characteristics were alternately present, which led to an extension of data collection in HPRs to 3 time periods. Piloting is essential to adjust study procedures and outcome measures to ensure a feasible national multicenter hospice study.
Introduction: Hospice care (HC) in the Netherlands is available for patients with life expectancies <3 months. Little is known about expectations of patients who might be in need of HC. This study aims to gain insight into expectations of patients regarding HC in order to ameliorate HC to become driven by patient needs. Design: A generic qualitative study, using semistructured interviews and thematic analysis, is performed in the Netherlands from January to June 2018. A purposeful sample of 13 participants was drawn. Results: Participants expected hospice admission only when the burden became unbearable and a home death cannot be reached. Participants expected a homely atmosphere, where one can continue the life lived at home as much as possible. Participants supposed empathic professional caregivers, capable of providing appropriate care. The general practitioner is expected to stay involved in the care process due to the mutual trust. Medical and daily care are required to be provided by competent professionals, where volunteers are expected to provide supportive care. All caregivers are supposed to provide a listening ear and “being there” for participants. Social care and spiritual care are generally projected to be private matters, unless it is requested. Conclusions: Patients in the palliative phase who might be in need of HC have specific expectations. Perceptions of HC in the public domain should be nuanced in response to these expectations, and information provision on HC should be improved. Then, expectations could be met to make HC more driven by patient needs and future oriented.
Objective: The aim is to examine and compare the level of health literacy (HL) amongst surgical vascular and abdominal patients and measuring the understandability and actionability of current and optimized education materials.Methods: A cross-sectional design was utilized. Patients undergoing abdominal or vascular surgery, were included for measuring HL with the Newest Vital Sign Dutch (NVS-d) tool. The Dutch version of the Patient Education Materials Assessment Tool (PEMAT) was used to measure the understandability and actionability of current and optimized patient education materials.Results: A total of 101 patients were included, of those 54 (53.5%) have limited HL. Patients with limited HL were significantly older (p < .001), lower educated (p < .001), and had a higher ASA status (p = .005) and Charlson Comorbidity Index score (p < .001). The occurrence of limited HL differed significantly (p = .046) between abdominal versus vascular patients. The understandability varied between 24%-59% and the actionability between 40%-67% of the current education materials. The optimized education materials had a understandability score of 86% and a actionability score of 100%.Conclusions: The high prevalence of inadequate HL emphasizes the importance of nursing and medical staff providing clear information to enable shared decision-making. Besides, it is necessary to evaluate current education materials and optimize these materials according to the level of health literacy to provide health information that is understandable.
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