Collaboration at the End of Life between Professional Care Providers and Family Carers: A Qualitative Study

Author(s):  
Maarten Vermorgen
2019 ◽  
Vol 24 (10) ◽  
pp. 1654-1661 ◽  
Author(s):  
Nathan Davies ◽  
Steve Iliffe ◽  
Jenny Hopwood ◽  
Nina Walker ◽  
Jamie Ross ◽  
...  

2019 ◽  
Vol 18 (1) ◽  
Author(s):  
Xiao Bin Lai ◽  
Li Qun Chen ◽  
Shu Hui Chen ◽  
Hai Ou Xia

Abstract Background Only a small number of patients have utilized the home-based end-of-life care service in Shanghai that has been offered since 2012. This study explores how home-based end-of-life care is delivered in community health service centers in Shanghai and examines the difficulties in the delivery of the care. Methods This was a qualitative study in which data were collected from interviews and analyzed using qualitative content analysis. Nineteen health care providers with experience in delivering home-based end-of-life care in 12 community health service centers were recruited. The interviews were conducted between August 2018 and February 2019. Results Four themes emerged from the interviews: (i) Patients under home-based end-of-life care: Patients receiving the care were cancer patients with less than 1 year of life expectancy. The criteria for patients were broad. (ii) Service structure: The service was delivered regularly by the physicians and nurses using the approaches of home visits and/or telephone follow-ups. (iii) Service process: The service consisted of multiple components, including monitoring the patient’s condition, managing the patient’s symptoms, giving daily care instructions, performing nursing procedures, and giving psychological support. However, most of the care focused on monitoring the patients and managing their physical discomfort. (iv) Difficulties in delivering care: Being unable to provide the service and feeling powerless when facing psycho-spiritual problems were the two major difficulties. Three factors contributed to the suspension of the service: The gap between the service and the needs of the patients, a lack of patients, and low work motivation. The demand that the truth be concealed from the families and their attitude of avoiding talking about death were the key factors of the failure of psycho-spiritual care. Conclusions Several issues should be addressed before the service can be further developed, including fully understanding the needs and preferences of local patients and their families, securing more financial support and a better supply of drugs, delivering better training for staff, and ensuring greater rewards for individuals and institutions providing the service.


Author(s):  
Amy Mathieson ◽  
Karen Luker ◽  
Gunn Grande

Abstract Aim: To explore the introduction of an evidence-based information intervention – the ‘Caring for Someone with Cancer’ booklet – within home care and end-of-life care, to inform future implementation and practice development within this setting. Background: Family carers’ contribution is crucial to enable care and death of people at home. The ‘Caring for Someone with Cancer’ booklet received positive responses from family carers and District Nurses and is an evidence-based intervention designed to support carers to deliver basic nursing tasks. Further feasibility work was required to establish how it should be implemented. Little is known about how to successfully translate interventions into practice, particularly within home care settings and end-of-life care. Methods: Implementation of the ‘Caring for Someone with Cancer’ booklet, utilising a qualitative case study approach, in four home care sites. Semi-structured interviews, informed by Normalization Process Theory (NPT), were undertaken at implementation sites in May 2016–June 2017. Participants were generalist and specialist nurses, managers, and Healthcare Assistants (HCAs). A framework approach to analysis was adopted. Findings: Forty-five members of staff participated. Failed implementation was associated with organisational-level characteristics and conditions, including workforce composition and predictability of processes. Unstable work environments meant home care providers focused on short-term rather than long-term goals, precluding practice development. Staff’s perceptions of the time available to engage with and implement the intervention inhibited adoption, as many participants were “just getting through the day”. Implementation was successful in sites with explicit management support, including proactive implementation attempts by managers, which legitimatised the change process, and if all staff groups were engaged. To encourage uptake of evidence-based interventions in home care settings, practitioners should be given opportunities to critically reflect upon taken-for-granted practices. Future implementation should focus on work pertaining to the NPT construct ‘Collective Action’, including how staff interact and build confidence in new practices.


2014 ◽  
Vol 24 (1-2) ◽  
pp. 131-140 ◽  
Author(s):  
Barbara A Jack ◽  
Mary R O'Brien ◽  
Joyce Scrutton ◽  
Catherine R Baldry ◽  
Karen E Groves

2017 ◽  
Vol 32 (3) ◽  
pp. 631-642 ◽  
Author(s):  
Marie Poole ◽  
Claire Bamford ◽  
Emma McLellan ◽  
Richard P Lee ◽  
Catherine Exley ◽  
...  

2014 ◽  
Vol 32 (31_suppl) ◽  
pp. 151-151
Author(s):  
Olivier Huillard ◽  
Pascale Vinant ◽  
Isabelle Colombet ◽  
Vincent Montheil ◽  
Marie Yvonne Guillard ◽  
...  

151 Background: Discussions concerning patients’ (pts) preferences regarding end-of-life (EOL) care can improve the quality of care in non-curable-cancer-pts. Nevertheless having such discussions is difficult for health care providers and discrepancies exist regarding the frequency of such discussions. Methods: We conducted a single center qualitative study exploring oncologists’ attitudes and practices toward EOL discussions and the feasibility of an intervention designed to explore and collect pts’ preferences regarding EOL care. For oncologists, the intervention consisted in a semi structured interview and in a questionnaire concerning pts included. For pts, semi-structured-in-depth-interviews were conducted to assess their opinion about EOL discussions and the feasibility of exploring and collecting their preferences regarding EOL care in our practice setting. Resulting anxiety was measured. Results: Oncologists’ interviews (n=5), revealed that EOL discussions were rare, more likely to be initiated by pts and to arise lately in the evolution of the disease. Main barriers invoked were the difficulty of having such conversation, the limited time available, the risks of maleficence (mainly anxiety and loss of hope) and the uncertainty concerning expected benefits. Pts’ interviews (n=10) revealed that most of them were willing to be part of medical decisions concerning their EOL care. Few preferences regarding EOL-care were actually collected but the resulting in-depth discussions help mentioning a great variety of unusual topics as well as emotional, cultural and spiritual issues. Anxiety as a side effect was uncommon. Interviewers and oncologists often overestimated pts’ anxiety which is consistent with a projection of their own anxiety. Conclusions: Discussions concerning EOL care are uncommon in the setting studied and four main barriers were identified. Having these conversations was feasible and led to unexpected in-depth interviews concerning topics rarely addressed in our current practice. This intervention could help clarifying pts’ preferences and identifying psychosocial issues that could trigger palliative care team referral.


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