Exploring comprehensibility and manageability in palliative home care: An interview study of dying cancer patients' informal carers

2004 ◽  
Vol 13 (9) ◽  
pp. 605-618 ◽  
Author(s):  
Anna Milberg ◽  
Peter Strang
2020 ◽  
Author(s):  
Naomi Dhollander ◽  
Tinne Smets ◽  
Aline De Vleminck ◽  
Lore Lapeire ◽  
Koen Pardon ◽  
...  

Abstract Background: To support the early integration of palliative home care (PHC) in cancer treatment, we developed the EPHECT intervention and pilot tested it with 30 advanced cancer patients in Belgium using a pre post design with no control group. We aim to determine the feasibility, acceptability and perceived effectiveness of the EPHECT intervention.Methods: Interviews with patients (n=16 of which 11 dyadic with family caregivers), oncologists and GPs (n=11) and a focus group with the PHC team. We further analyzed the study materials and logbooks of the PHC team (n=8). Preliminary effectiveness was assessed with questionnaires EORTC QLQ C-30, HADS and FAMCARE and were filled in at baseline and 12, 18 and 24 weeks.Results: In the interviews after the intervention period, patients reported feelings of safety and control and an optimized quality of life. The PHC team could focus on more than symptom management because they were introduced earlier in the trajectory of the patient. Telephone-based contact appeared to be insufficient to support interprofessional collaboration. Furthermore, some family caregivers reported that the nurse of the PHC team was focused little on them.Conclusion: Nurses of PHC teams are able to deliver early palliative care to advanced cancer patients. However, more attention needs to be given to family caregivers as caregiver and client. Furthermore, the home visits by the PHC team have to be further evaluated and adapted. Lastly, professionals have to find a more efficient way to discuss future care.


2020 ◽  
Vol 19 (1) ◽  
Author(s):  
Heidi Kern ◽  
Giorgio Corani ◽  
David Huber ◽  
Nicola Vermes ◽  
Marco Zaffalon ◽  
...  

Abstract Background Most terminally ill cancer patients prefer to die at home, but a majority die in institutional settings. Research questions about this discrepancy have not been fully answered. This study applies artificial intelligence and machine learning techniques to explore the complex network of factors and the cause-effect relationships affecting the place of death, with the ultimate aim of developing policies favouring home-based end-of-life care. Methods A data mining algorithm and a causal probabilistic model for data analysis were developed with information derived from expert knowledge that was merged with data from 116 deceased cancer patients in southern Switzerland. This data set was obtained via a retrospective clinical chart review. Results Dependencies of disease and treatment-related decisions demonstrate an influence on the place of death of 13%. Anticancer treatment in advanced disease prevents or delays communication about the end of life between oncologists, patients and families. Unknown preferences for the place of death represent a great barrier to a home death. A further barrier is the limited availability of family caregivers for terminal home care. The family’s preference for the last place of care has a high impact on the place of death of 51%, while the influence of the patient’s preference is low, at 14%. Approximately one-third of family systems can be empowered by health care professionals to provide home care through open end-of-life communication and good symptom management. Such intervention has an influence on the place of death of 17%. If families express a convincing preference for home care, the involvement of a specialist palliative home care service can increase the probability of home deaths by 24%. Conclusion Concerning death at home, open communication about death and dying is essential. Furthermore, for the patient preference for home care to be respected, the family’s decision for the last place of care seems to be key. The early initiation of family-centred palliative care and the provision of specialist palliative home care for patients who wish to die at home are suggested.


2011 ◽  
Vol 9 (1) ◽  
pp. 43-54 ◽  
Author(s):  
Louise Olsson ◽  
Gunnel Östlund ◽  
Peter Strang ◽  
Eva Jeppsson Grassman ◽  
Maria Friedrichsen

AbstractObjective:The experience of hope among cancer patients in palliative care is important information for healthcare providers, but research on the subject is sparse. The aim of this article was to explore how cancer patients admitted to palliative home care experienced the significance of hope and used hope during 6 weeks throughout the last phase of their life, and to assess their symptoms and hope status during 6 weeks throughout the last phase of their lives.Method:Eleven adult patients with cancer participated in 20 interviews and completed seven diaries. The participants were recruited from two palliative care units in the southeast of Sweden. The method used was Grounded Theory (GT), and analysis was based on the constant comparative method.Results:The core category, glimmering embers, was generated from four processes: (1) The creation of “convinced” hope, with a focus on positive events, formed in order to have something to look forward to; (2) The creation of “simulated hope,” including awareness of the lack of realism, but including attempts to believe in unrealistic reasons for hope; (3) The collection of and maintaining of moments of hope, expressing a wish to “seize the day” and hold on to moments of joy and pleasure; and (4) “Gradually extinct” hope, characterized by a lack of energy and a sense of time running out.Significance of results:The different processes of hope helped the patients to continue to live when they were close to death. Hope should be respected and understood by the professionals giving them support.


2010 ◽  
Vol 9 (1) ◽  
Author(s):  
Saskia Jünger ◽  
Tania Pastrana ◽  
Martina Pestinger ◽  
Martina Kern ◽  
Boris Zernikow ◽  
...  

2015 ◽  
Vol 14 (1) ◽  
Author(s):  
Stephanie Stiel ◽  
Maria Heckel ◽  
Andreas Seifert ◽  
Tobias Frauendorf ◽  
Roland Martin Hanke ◽  
...  

2007 ◽  
Vol 5 (1) ◽  
pp. 51-59 ◽  
Author(s):  
KERSTIN RYDÉ ◽  
MARIA FRIEDRICHSEN ◽  
PETER STRANG

Objective: Crying is a common but seldom studied phenomenon in palliative care. The aim of this study was to explore the significance of patients crying in a palliative care context.Methods: Tape-recorded interviews with 14 cancer patients in palliative home care were carried out. To gain deeper understanding, a hermeneutic analysis and interpretation was used.Results: Crying was described in different dimensions: (1) intense and despondent crying as a way of ventilating urgent needs, (2) gentle, sorrowful crying as a conscious release of emotions, and (3) quiet, tearless crying as a protection strategy. Crying seems to be an expression for an inner emotional force, provoked by different factors, which cause changes in the present balance. To cry openly but also to cry on the inside meant being able to achieve or maintain balance. Crying may be something useful, which could create release and help reduce tension, but it may also have a negative impact as it consumes energy and creates feelings of shame.Significance of results: Professionals need to understand the different levels of crying. In such situations sometimes comforting the patient may not be the best solution, as some may need privacy.


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