Factors affecting quality of end-of-life hospital care - a qualitative analysis of free text comments from the i-CODE survey in Norway

BackgroundPalliative care strives to improve quality of life for patients with incurable diseases. This approach includes adequate support of the patients’ loved ones. Consequently, loved ones have personal experiences of providing end-of-life care for their next. This is a resource for information and may help to investigate the loved ones’ perspectives on need for improvements.AimTo identify further quality aspects considered important by loved ones to improve the quality of care at the end of life as an addition to quantitative results from the Care of the Dying Evaluation for the German-speaking area (CODE-GER) questionnaire.DesignWithin the validation study of the questionnaire ‘Care of the Dying Evaluation’ (CODETM) GER, loved ones were asked to comment (free text) in parallel on each item of the CODE-GER. These free-text notes were analysed with the qualitative content analysis method by Philipp Mayring.Setting/participantsLoved ones of patients (n=237), who had died an expected death in two university hospitals (palliative and non-palliative care units) during the period from April 2016 to March 2017.Results993 relevant paragraphs were extracted out of 1261 free-text notes. For loved ones, important aspects of quality of care are information/communication, respect of the patient’s and/or loved one’s will, involvement in decision-making at the end of life (patient’s volition) and having the possibility to say goodbye.ConclusionsIt is important for loved ones to be taken seriously in their sorrows, to be informed, that the caregivers respect the patients’ will and to be emotionally supported.Trial registration numberThis study was registered at the German Clinical Trials Register (DRKS00013916).

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Assessing quality of end-of-life hospital care in a southern European regional health service

International Journal of Technology Assessment in Health Care ◽

10.1017/s0266462305050646 ◽

2005 ◽

Vol 21 (4) ◽

pp. 464-470 ◽

Cited By ~ 4

Author(s):

Elena Aldasoro ◽

Adelina Pérez Alonso ◽

Laureano Ribacoba ◽

Santiago Esnaola ◽

Maite Olaizola ◽

...

Keyword(s):

Palliative Care ◽

Quality Of Care ◽

End Of Life ◽

Cancer Patients ◽

Hospital Care ◽

Symptom Control ◽

Hospital Services ◽

Palliative Care Units ◽

Clinical Records

Objectives:During the final period of life, patients with cancer in the Basque Country are given treatment in different types of hospital care. This study compared the quality of care according to the type of care in one of the autonomous communities in Spain.Methods:A retrospective study was carried out of cancer patients who died in conventional hospital services, home hospitalization services, and palliative care units. In addition to hospital stay and readmission number, variables based on the recommendations of Spanish Society for Palliative Care were studied.Results:End-of-life was diagnosed in 57 percent of a sample of 486 patients, 3 days before death (median). The use of symptom control scales was only documented in the clinical records of eight patients. Sociofamily evaluation was not found. Patients in conventional hospital services were less frequently diagnosed with end-of-life and agony and were significantly different from the rest in the reasons for admission, symptoms assessed, drugs used, administration routes, and dosage forms. Pain was evaluated in 50 percent of the patients and was better controlled in palliative care units. Patients not diagnosed with agony (52 percent) were more frequently not given specific treatment.Conclusions:End-of-life in cancer patients was diagnosed too late. The quality of care in palliative care units and by home hospitalization service was better than that in conventional hospitalization. Nevertheless, there were areas for improvement in the three modalities of care.

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Experiences of the International In-Training Examination (I-ITE) by Rwandan pediatric residents – a mixed-methods description of candidate feedback

F1000Research ◽

10.12688/f1000research.27293.1 ◽

2020 ◽

Vol 9 ◽

pp. 1448

Author(s):

Peter Cartledge ◽

Christian Umuhoza ◽

Natalie McCall

Keyword(s):

Mixed Methods ◽

Qualitative Analysis ◽

Assessment Tool ◽

Mixed Methods Study ◽

Free Text ◽

Pediatric Residents ◽

Pediatric Residency ◽

Qualitative Feedback ◽

The University

Background: The University of Rwanda is the only African residency to have implemented the pediatric International In-Training Examination (I-ITE) as a tool to monitor resident knowledge acquisition. The objective of this study was to better understand the acceptance and relevance of this exam to residents from this setting and their perceptions regarding this assessment tool. Methods: This is a mixed-methods study describing candidate feedback. Immediately on completing the I-ITE residents provided feedback by filling in an electronic questionnaire comprised of four closed Likert questions and an open text box for free-text feedback. Participants were pediatric residents from the University of Rwanda, the only university in Rwanda with a pediatric residency program. Quantitative analysis of the Likert questions was undertaken descriptively using SPSS. Free-text feedback was coded and analysed. No specific guiding theory was used during the qualitative analysis, with coding and analysis undertaken by two researchers. Results: Eighty-four residents completed a total of 213 I-ITE sittings during the five exam cycles undertaken during the study period. Quantitative and qualitative feedback was given by residents during 206 and 160 sittings, giving a response rate of 97% and 75%, respectively. Five themes emerged from the qualitative analysis; 1) undertaking the I-ITE was a positive experience; 2) exam content; 3) formative nature of the assessment; 4) challenges to completing the exam; 5) practicalities to undertaking the exam. Conclusion: Qualitative feedback demonstrates that the I-ITE, a standardized, and independent exam, produced by the American Board of Pediatrics, was valued and well accepted by Rwanda pediatric residents. Its formative nature and the breadth and quality of the questions were reported to positively contribute to the residents' formative development.

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“When I Heard the Word Palliative”: Obscuring and Clarifying Factors Affecting the Stigma Around Palliative Care Referral in Oncology

JCO Oncology Practice ◽

10.1200/op.21.00088 ◽

2021 ◽

pp. OP.21.00088

Author(s):

Taynara Formagini ◽

Claire Poague ◽

Alicia O'Neal ◽

Joanna Veazey Brooks

Keyword(s):

Palliative Care ◽

End Of Life ◽

Vital Role ◽

Cancer Center ◽

Factors Affecting ◽

Patients With Cancer ◽

Social Network Influence ◽

Qualitative Descriptive ◽

Cancer Trajectory

PURPOSE Palliative care (PC) can help patients with cancer manage symptoms and achieve a greater quality of life. However, there are many barriers to patients with cancer receiving referrals to PC, including the stigmatizing association of PC with end of life. This study explores factors that obscure or clarify the stigma around PC referrals and its associations with end of life in cancer care. METHODS A qualitative descriptive design using grounded theory components was designed to investigate barriers to PC referrals for patients receiving treatment at an outpatient cancer center. Interviews with patients, caregivers, and oncology professionals were audio-recorded, transcribed, and independently coded by three investigators to ensure rigor. Participants were asked about their perceptions of PC and PC referral experiences. RESULTS Interviews with 44 participants revealed both obscuring and clarifying factors surrounding the association of PC as end of life. Prognostic uncertainty, confusion about PC's role, and social network influence all perpetuated an inaccurate and stigmatizing association of PC with end of life. Contrarily, familiarity with PC, prognostic confidence, and clear referral communication helped delineate PC as distinct from end of life. CONCLUSION To reduce the stigmatizing association of PC with end of life, referring clinicians should clearly communicate prognosis, PC's role, and the reason for referral within the context of each patient and his or her unique cancer trajectory. The oncology team plays a vital role in framing the messaging surrounding referrals to PC.

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15 / IDENTIFYING THE COMMUNICATION, INFORMATION AND SUPPORT NEEDS OF STAKEHOLDERS IN PALLIATIVE AND END-OF-LIFE CARE USING A QUALITATIVE ANALYSIS OF FREE-TEXT DATA.

10.26226/morressier.5afadd8bf314ac000849b319 ◽

2018 ◽

Author(s):

Stephanie Sivell

Keyword(s):

Qualitative Analysis ◽

End Of Life ◽

End Of Life Care ◽

Support Needs ◽

Free Text ◽

Life Care ◽

Text Data

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FAMILY CAREGIVERS’ COMMUNICATION NEEDS AT THE END OF LIFE OF OLDER PATIENTS AT GERIATRIC FACILITIES

Innovation in Aging ◽

10.1093/geroni/igz038.212 ◽

2019 ◽

Vol 3 (Supplement_1) ◽

pp. S54-S55

Author(s):

Rinat Cohen ◽

Gal Maydan ◽

Shai Brill ◽

Jiska Cohen-Mansfield

Keyword(s):

Qualitative Analysis ◽

End Of Life ◽

Family Caregivers ◽

Nursing Care ◽

Information Needs ◽

Assisted Ventilation ◽

Skilled Nursing ◽

Language And Culture ◽

Communication Needs

Abstract Current literature on end-of-life communication (EOLC) between family caregivers (FCs) and health professionals (HPs) lacks reference to FCs’ communication needs and primarily addresses its formal aspects of communication such as offering advance directives. We explored FC’s communication needs and developed a questionnaire to evaluate the quality of EOLC. Interviews were conducted with 152 Israeli FCs of patients from nursing care, skilled nursing care, assisted ventilation, and dementia units within four facilities (nursing homes and geriatric medical centers). Most participants were women (61%), married (78%), and were children of the patients (77%), with a mean age of 57.5 (S.D.=12.01, range: 29-88). Qualitative analysis yielded several themes: FCs’ concerns about the availability and accessibility of all types of HPs, information needs (e.g., the need for regular updates initiated by HPs), FCs’ need for emotional support, and difficulties stemming from differences in language and culture. The need for improved communication in these spheres extended to all stages of hospitalization. Based on these needs, we developed a questionnaire to evaluate the quality of EOLC. Reliability was measured in a different sample, and ranged from Cronbach alpha of .916 (41 items; 41 FCs) to .937 (41 items with discrimination index greater than .3; 78 FCs). Factor analysis yielded factors similar to the themes that emerged from the qualitative analysis. The findings highlight aspects of EOLC between FCs and HPs which should be addressed and improved. Thus, this study is a crucial first step toward improving the quality of care at the end-of-life.

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