scholarly journals Volunteers in a biography project with palliative care patients – a feasibility study

2019 ◽  
Vol 18 (1) ◽  
Author(s):  
Michaela Hesse ◽  
Simon Forstmeier ◽  
Henning Cuhls ◽  
Lukas Radbruch
Keyword(s):  
Palliative Care ◽  
Qualitative Content Analysis ◽  
Advanced Training ◽  
Staff Time ◽  
Negative Experiences ◽  
Hospice Volunteers ◽  
Vulnerable Patients ◽  
Time And Energy ◽  
Ongoing Support

Abstract Background Increasing the quality of life with short interventions for vulnerable patients is one of the objectives of palliative care. Biographical approaches are used in a range of different interventions which may require considerable resources of staff time and energy. This study evaluated the feasibility of training hospice volunteers in biographical interviews of patients confronted with a life-limiting disease. For the purpose of this study, we evaluated resources such as time needed for training, coordination and supervision, outcome such as completion of the intervention in appropriate time and risks such as causing distress in patients or volunteers as major determinants of feasibility. Methods Nine volunteers from a hospice service attended an advanced training with an introduction to palliative care, biography work, interview techniques, transcribing and writing. Volunteers interviewed a patient and developed a written narrative from the interview. Volunteers completed a questionnaire before training and were interviewed at the end of the project. The interviews were audiotaped, transcribed, and evaluated using descriptive and qualitative content analysis. Results Patients provided positive feedback from the intervention. Volunteers felt that their involvement was personally rewarding and were moved by the courage and confidence of the patients. There were no systematic problems or negative experiences reported neither by volunteers nor by patients. Conclusions We found the use of volunteers for biography work with patients in palliative care feasible and effective in this study. Volunteers needed supervision and ongoing support in providing this intervention.

Hospital end-of-life care: families’ free-text notes

2020 ◽  
pp. bmjspcare-2020-00239
Author(s):  
Sandra Kurkowski ◽  
Johannes Radon ◽  
Annika R Vogt ◽  
Martin Weber ◽  
Stephanie Stiel ◽  
...  
Keyword(s):  
Palliative Care ◽  
Quality Of Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Qualitative Content Analysis ◽  
Free Text ◽  
Life Care ◽  
Quality Aspects ◽  
Care Of The Dying

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).

scholarly journals Stakeholder engagement in research on quality of life and palliative care for brain tumors: a qualitative analysis of #BTSM and #HPM tweet chats

2020 ◽  
Vol 7 (6) ◽  
pp. 676-684 ◽  
Author(s):  
Liz Salmi ◽  
Hillary D Lum ◽  
Adam Hayden ◽  
Maija Reblin ◽  
Shirley Otis-Green ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Brain Tumor ◽  
Qualitative Analysis ◽  
Stakeholder Engagement ◽  
Qualitative Content Analysis ◽  
Research Priorities ◽  
Tumor Patients ◽  
Care Partners

Abstract Background Research is needed to inform palliative care models that address the full spectrum of quality of life (QoL) needs for brain tumor patients and care partners. Stakeholder engagement in research can inform research priorities; engagement via social media can complement stakeholder panels. The purpose of this paper is to describe the use of Twitter to complement in-person stakeholder engagement, and report emergent themes from qualitative analysis of tweet chats on QoL needs and palliative care opportunities for brain tumor patients. Methods The Brain Cancer Quality of Life Collaborative engaged brain tumor (#BTSM) and palliative medicine (#HPM) stakeholder communities via Twitter using tweet chats. The #BTSM chat focused on defining and communicating about QoL among brain tumor patients. The #HPM chat discussed communication about palliative care for those facing neurological conditions. Qualitative content analysis was used to identify tweet chat themes. Results Analysis showed QoL for brain tumor patients and care partners includes psychosocial, physical, and cognitive concerns. Distressing concerns included behavioral changes, grief over loss of identity, changes in relationships, depression, and anxiety. Patients appreciated when providers discussed QoL early in treatment, and emphasized the need for care partner support. Communication about QoL and palliative care rely on relationships to meet evolving patient needs. Conclusions In addition to providing neurological and symptom management, specialized palliative care for brain tumor patients may address unmet patient and care partner psychosocial and informational needs. Stakeholder engagement using Twitter proved useful for informing research priorities and understanding stakeholder perspectives on QoL and palliative care.

Developing relationships: A strategy for compassionate nursing care of the dying in Japan

2013 ◽  
Vol 12 (6) ◽  
pp. 455-464 ◽  
Author(s):  
Kaori Shimoinaba ◽  
Margaret O'Connor ◽  
Susan Lee ◽  
David Kissane
Keyword(s):  
Palliative Care ◽  
Cultural Values ◽  
Cultural Influences ◽  
Major Influence ◽  
Nurse Role ◽  
Data Saturation ◽  
Primary Nurse ◽  
Palliative Care Units ◽  
Time And Energy

AbstractObjectives:The aim of this study was to explore the type of relationship and the process of developing these relationships between nurses and patients in palliative care units in Japan. The special contribution that culture makes was examined to better understand the intensity of nurses’ grief after the death of their patient.Methods:Thirteen Japanese registered nurses currently practicing in palliative care units were interviewed between July 2006 to June 2009. Theoretical sampling was utilised and the data were analysed using grounded theory methodology. Constant comparison was undertaken during coding processes until data saturation was achieved.Results:Significant cultural influences emerged both in the type of relationship nurses formed with patients and in the way they developed relationships. The type of relationship was termed ‘human-to-human’, meaning truly interpersonal. The cultural values of ‘Uchi (inside) and Soto (outside)’ have particular implications for the relationship. Four actions Being open, Trying to understand, Devoting time and energy, and Applying a primary nurse role, were identified as strategies for nurses to develop such relationships. The quality of this deeply committed encounter with patients caused nurses to grieve following patients’ death.Significance of results:Culture is a major influence upon the reasons, complexities, and impact that lie behind nurses’ behaviours. Attention is needed to support nurses to sustain a fundamental caring quality in their relationships with patients.

Widening the horizons: Information space of the library for the blind as the resource to improve quality of life of visually impaired people

2020 ◽  
Author(s):  
Olga Novikova ◽  
Keyword(s):  
Quality Of Life ◽  
Continuing Education ◽  
Visually Impaired ◽  
Information Space ◽  
Advanced Training ◽  
Improve Quality ◽  
Visually Impaired People ◽  
Impaired People ◽  
Special Library

The special library acts as the cultural and educational center for visually impaired people, and as the center for continuing education. The multifunctional performance of the library is substantiated. The joint projects accomplished in cooperation with theatres and museums and aimed at integrating the visually impaired people into the society are described. Advanced training projects for the library professionals accomplished in 2018 are discussed.

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