scholarly journals 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.

2018 ◽  
Author(s):  
Stephanie Sivell
Keyword(s):  
Qualitative Analysis ◽  
End Of Life ◽  
End Of Life Care ◽  
Support Needs ◽  
Free Text ◽  
Life Care ◽  
Text Data

41 ‘We should not shy away from asking what it is that patients want’ a supplementary qualitative analysis of the jla peolcpsp free text data

2018 ◽  
Vol 8 (3) ◽  
pp. 375.1-375
Author(s):  
S Sivell ◽  
J Baillie ◽  
J VanGodwin ◽  
A Byrne ◽  
A Nelson
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Priority Setting ◽  
End Of Life Care ◽  
Support Needs ◽  
Free Text ◽  
List Type ◽  
Life Care ◽  
Text Data ◽  
Priority Setting Partnership

IntroductionPalliative and end-of-life care is under-researched (Higginson 2016) with stakeholders likely to have a range of unmet communication information and support needs. The James Lind Alliance (JLA) Priority Setting Partnership (PeolcPSP) identified the pertinent ‘treatment uncertainties’ for palliative and end-of-life care focusing on interventional based research (JLA PeolcPSP Survey 2015). Respondents also submitted comments that were out of scope of the JLA methodology.AimTo undertake a supplementary analysis of JLA PeolcPSP survey free text data focusing on communication information and support needs.MethodsA supplementary thematic qualitative analysis of the JLA PeolcPSP free-text data was undertaken in the final dataset of 1403 responses. The original coding framework was reviewed and refined until agreement was reached (Nelson 2016).ResultsApproximately one third of respondents (n=444; 31.65%) were included in this analysis; four overarching themes were identified:Availability accessibility and improving information: focusing on support and guidance as well as improving and finding information.Effectiveness of communication between stakeholders: openness and transparency between stakeholders; improving the communication of diagnosis and prognosis; exploring decision–making responsibilities.Eliciting preferences and values: treatment decisions Advance Care Planning and preferred place of care.Spiritual and psychosocial needs: providing emotional and psychological support for patients carers and professionals.ConclusionsWe identified a wide range of communication and decision-making concerns as well as psychosocial support adding further insight to the survey results. Both quantitative and qualitative approaches are recommended if we are to meet all stakeholders’ needs in palliative and end-of-life care.References. Higginson IJ. Research challenges in palliative and end of life care. BMJ Supportive & Palliative Care2016;6:2–4.. Nelson A. Between the lines/beyond the questions; Shared experiences of palliative and end of life care. Summary ReportJuly 2016. Available from https://www.mariecurie.org.uk/globalassets/media/documents/research/publications/beyond-the-questions-esrc-report.pdf. Palliative and end of life care Priority Setting Partnership (PeolcPSP). (2015). Final Report15 January 2015. Available from https://www.mariecurie.org.uk/globalassets/media/documents/research/PeolcPSP_Final_Report.pdf (Accessed: 30 May 2018)

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 A qualitative analysis of responses to a question prompt list and prognosis and end-of-life care discussion prompts delivered in a communication support program

2014 ◽  
Vol 24 (3) ◽  
pp. 287-293 ◽  
Author(s):  
Adam Walczak ◽  
Inge Henselmans ◽  
Martin H. N. Tattersall ◽  
Josephine M. Clayton ◽  
Patricia M. Davidson ◽  
...  
Keyword(s):  
Qualitative Analysis ◽  
End Of Life ◽  
End Of Life Care ◽  
Support Program ◽  
Life Care ◽  
Communication Support ◽  
Question Prompt List ◽  
Question Prompt

Future provision of home end-of-life care: Family carers’ willingness for caregiving and needs for support

2020 ◽  
pp. 1-7
Author(s):  
Wallace Chi Ho Chan
Keyword(s):  
Psychological Distress ◽  
End Of Life ◽  
End Of Life Care ◽  
Assessment Tool ◽  
Family Members ◽  
Depression Scale ◽  
Support Needs ◽  
Life Care ◽  
Family Carers ◽  
Additional Support

Abstract Objective This study aimed to examine family carers’ willingness, perceived difficulties and confidence in providing home end-of-life care to family members in future and their needs for support for doing so. Specific focus was on whether significant differences were found between carers of low and high levels of psychological distress. Method Family carers who had been providing care to family members living in the community were recruited via a local elderly agency in Hong Kong. A survey was conducted. Carers were asked to complete a questionnaire which included self-developed items, the Hospital Anxiety and Depression Scale, and the Carers’ Support Need Assessment Tool. Results Of the 89 participants, 63.8% reported willingness to provide end-of-life care in future (increased to 78.5% if support needs were met), but most perceived it as difficult, and over half were not confident about doing so. The three greatest needs for support in end-of-life care are understanding the relative's illness, knowing what to expect in future, and knowing who to contact if concerned. Participants of the high psychological distress group experienced a significantly greater need for support in “dealing with your feelings and worries” and “looking after your own health.” Significance of Results Current family carers may not be ready for future provision of home end-of-life care. Meeting their support needs in providing end-of-life care is crucial to ensure the continuity of care provision. Psychologically distressed carers may often ignore self-care and may need helping professionals’ additional support.

scholarly journals A national survey of ambulance paramedics on the identification of patients with end of life care needs

2021 ◽  
Vol 5 (4) ◽  
pp. 60-61
Author(s):  
Peter Eaton-Williams ◽  
Jack Barrett ◽  
Craig Mortimer ◽  
Julia Williams
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Primary Care Providers ◽  
Free Text ◽  
Life Care ◽  
Care Providers ◽  
Care Needs ◽  
Online Questionnaire ◽  
Communication Difficulties ◽  
Assessment Training

<sec id="s1"> Aims: Developing the proactive identification of patients with end of life care (EoLC) needs within ambulance paramedic clinical practice may improve access to care for patients not benefitting from EoLC services at present. To inform development of this role, this study aims to assess whether ambulance paramedics currently identify EoLC patients, are aware of identification guidance and believe this role is appropriate for their practice. </sec> <sec id="s2"> Methods: Between 4 November 2019 and 5 January 2020, registered paramedics from nine English NHS ambulance service trusts were invited to complete an online questionnaire. The questionnaire initially explored current practice and awareness, employing multiple-choice questions. The Gold Standards Framework Proactive Identification Guidance (GSF PIG) was then presented as an example of EoLC assessment guidance and further questions, permitting free-text responses, explored attitudes towards performing this role. </sec> <sec id="s3"> Results: 1643 questionnaires were analysed. Most participants (79.9%; n = 1313) perceived that they attended a patient who was formally unrecognised as within the last year of life on at least a monthly basis. Despite 72.0% (n = 1183) of paramedics indicating that they had previously made an EoLC referral to a General Practitioner (GP), only 30.5% (n = 501) were familiar with the GSF PIG and of those only 25.9% (n = 130) had received training in its use. Participants overwhelmingly believed that they can (94.4%; n = 1551) and should (97.0%; n = 1594) perform this role, yet current barriers were identified as the inaccessibility of a patient’s medical records, inadequate EoLC education and communication difficulties. Consequently, facilitators to performing this role were identified as the provision of further training in EoLC assessment guidance and establishing accessible, responsive EoLC referral pathways. </sec> <sec id="s4"> Conclusion: Ambulance paramedics frequently encounter patients that they perceive are not receiving appropriate EoLC provision, and participants in this study overwhelmingly supported a role in highlighting this to primary care providers. Though many paramedics are already making referrals for these patients, the majority are performed without knowledge of validated EoLC assessment guidance. Provision of EoLC assessment training might therefore be expected to improve the timeliness and sensitivity of referrals, potentially addressing current inequalities in access to EoLC. The communication difficulties currently encountered when making a referral might be addressed by the provision of dedicated EoLC referral pathways. Future qualitative and quantitative evaluation of local initiatives providing both assessment training and referral pathways would be hugely beneficial for revealing the benefits and barriers associated with the development of this role in practice. </sec>

Negotiating Transitions: Involvement of Critical Care Outreach Teams in End-of-Life Decision Making

2015 ◽  
Vol 24 (3) ◽  
pp. 232-240 ◽  
Author(s):  
Natalie Pattison ◽  
Geraldine O’Gara ◽  
Timothy Wigmore
Keyword(s):  
Decision Making ◽  
Critical Care ◽  
Medical Treatment ◽  
End Of Life ◽  
End Of Life Care ◽  
Free Text ◽  
Life Care ◽  
End Of Life Decision ◽  
Life Decision ◽  
Critical Care Outreach

Background Little research has examined the involvement of critical care outreach teams in end-of-life decision making. Objective To establish how much time critical care outreach teams spend with patients who are subsequently subject to limitation of medical treatment and end-of-life decisions and how much influence the teams have on those decisions. Methods A single-center retrospective review, with qualitative analysis, in a large cancer center. Data from all patients referred emergently for critical care outreach from October 2010 to October 2011 who later had limitation of medical treatment or end-of-life care were retrieved. Findings were analyzed by using SPSS 19 and qualitative free-text analysis. Results Of 890 patients referred for critical care outreach from October 2010 to October 2011, 377 were referred as an emergency; 108 of those had limitation of medical treatment and were included in the review. Thirty-five patients (32.4%) died while hospitalized. As a result of outreach intervention and a decision to limit medical treatment, 56 (51.9%) of the 108 patients received a formal end-of-life care plan (including care pathways, referral to palliative care team, hospice). About a fifth (21.5%) of clinical contact time is being spent on patients who subsequently are subject to limitation of medical treatment. Qualitative document analysis showed 5 emerging themes: difficulty of discussions about not attempting cardiopulmonary resuscitation, complexities in coordinating multiple teams, delays in referral and decision making, decision reversals and opaque decision making, and technical versus ethical imperatives. Conclusion A considerable amount of time is being spent on these emergency referrals, and decisions to limit medical treatment are common. The appropriateness of escalation of levels of care is often not questioned until patients become critically or acutely unwell, and outreach teams subsequently intervene.

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