As well as facilitating patients' wish to die at home, evaluating quality of care in this setting is essential. Postbereavement surveys with family members represent one assessment method. 'Care Of the Dying Evaluation' (CODE) is a 40-item self-completion postbereavement questionnaire, based on the key components of best practice for care of the dying.To assess the validity and reliability of CODE by conducting: cognitive 'think aloud' interviews; test-retest analysis; and assessing internal consistency and construct validity of three key composite scales.Postbereavement survey to next-of-kin (NOK).291 NOK to patients who died at home in Northwest England from an advanced incurable illness were invited to complete the CODE questionnaire. Additionally, potential participants were asked to undertake a cognitive interview and/or complete CODE for a second time a month later.72 bereaved relatives (24.7% response rate) returned the completed CODE questionnaire, and 25 completed CODE for a second time. 15 cognitive interviews were undertaken. All interviewees found CODE sensitively worded and easy to understand. Minor revisions were suggested to provide additional clarity. Test-retest analysis showed all except one question had moderate or good stability. Although the ENVIRONMENT scale was not as relevant within the home setting, all three key composite scales showed good internal consistency and construct validity.'CODE' represents a user-friendly, comprehensive outcome measure for care of the dying and has been found to be valid and reliable. CODE could potentially be used to benchmark individual organisations and identify areas for improvement.
The rapid development of technology creates opportunities to improve the delivery of healthcare. An example of a technological innovation with the potential to improve palliative care is the use of virtual reality (Bower, 2014). Previous studies have demonstrated that virtual reality (VR) is beneficial in certain situations (such as distraction therapy for pain management) and there some examples of use in hospices (Bower, 2014; Chirico, Lucidi, De Laurentiis, et al., 2016; Mahrer & Gold, 2009; Sharar, Miller, Teeley, et al., 2008). However, to date there is little data in the literature concerning the potential benefits of VR therapy in palliative care.
Aim
This project will determine the feasibility of using VR distraction therapy in specialist palliative care hospital and hospice inpatient settings.
Method
This project will be conducted according to the Plan, Do, Study and Act (PDSA) quality improvement cycle. Samsung Gear VR headsets will be used to deliver the VR experience. Participants will be recruited from the Marie Curie Hospice Liverpool and the Academic Palliative Care Unit of the Royal Liverpool University Hospital. Participants will select videos from a curated content library and will be interviewed following completion of the VR session. Information about the patient experience, length of VR sessions, content choice and adverse effects will be recorded. This project is part of the Royal Liverpool and Broadgreen University Hospitals NHS Trust Global Digital Exemplar (GDE) programme and will be conducted over two months.
Expected outcomes
The outcomes from the VR evaluation will help to develop future research, to study how VR can improve patient experience and support clinical care. Specifically, future work can examine whether VR-based distraction therapy can improve the symptom management for patients undergoing procedures. The outcomes of this project will be used to develop policy to support the wider adoption of VR in other hospital departments and hospices.
Due to developing demographic changes, including an aging society and the increasing prevalence of non-communicable diseases, Palliative Care is increasingly highlighted as a universal healthcare need. The need for Palliative Care in Armenia is set against the context of an underdeveloped healthcare system. Further, the absence of palliative medicine within medical education, particularly undergraduate education in Armenia presents a major barrier to improving care. This research aimed to assess the perception of young Armenian physicians' understanding of Palliative Care, its perceived status in Armenia and the experience and influence of any engaged Palliative Care education.Twenty Armenian first-year residents with different specializations were interviewed July and September 2016 regarding: understanding/knowledge, experiences, perceived competence, and expectations of Palliative Care and Palliative Care education. The transcripts from these semi-structured interviews were analyzed using Qualitative Content Analysis.Participants perceived that Armenia's health care system lacked sufficient Palliative Care and Palliative Care education. Although elements of Palliative Care were included in different specialty teaching, this provided just a partial understanding of typical Palliative Care patients/symptoms, approaches to holistic care, and crucially key communication skills. Challenges noted by participants in caring for Palliative Care patients included emotional difficulties, communication of diagnosis/prognosis, uninformed patients and concerns for patients, families, and physicians. Self-confidence in caring for patients with incurable illness varied. Participants hoped for increasing availability and accessibility of Palliative Care, and extension of clinical education in Palliative Care at all levels (undergraduate, postgraduate, specialization).Absence of training has resulted in misconceptions and ignorance of common concepts and practices in Palliative Care. Palliative Care education needs to be systematically developed and integrated into clinical training within Armenia. This research may provide a rallying call for changes within the core curricula in Armenia and may also encourage collaborative development in associated countries of the Caucasus region.
Introduction The remote delivery of dementia-related support services by information communication technology, defined as any hardware or software, including the telephone and videoconferencing software, increased during the coronavirus pandemic. To guide the future use of information communication technology, this study explored the experiences of delivering and accessing social care and support services during the pandemic in the UK. Method Remote semi-structured interviews with social care and support providers, people with dementia and family carers were conducted between May-December 2022. Topic guides were co-developed with two public advisors (one former family carer, one person with dementia) and garnered information on delivering and accessing services during the pandemic. Audio recordings were transcribed verbatim. Employing a mixture of inductive and deductive analytic approaches, a thematic analysis was conducted. Results Twenty-one interviews ( n = 14 social care and support providers; n = 6 family carers; n = 2 people with dementia) were conducted. Three themes were generated: adapting to changing circumstances; responding to unmet needs by information communication technology and information communication technology should be a tool, not the default. Social care and support providers’ creativity and motivation facilitated the adoption of information communication technology, however, available resources and guidance varied. While some people with dementia and family carers benefitted from accessing services by information communication technology to address some needs, the format was not suitable for everyone. Conclusions Beyond the coronavirus pandemic, the use of information communication technology within service delivery needs to be carefully considered, to avoid disenfranchising some people with dementia and family carers, while empowering people with the option of how to access services. Digital training and guidelines advising the use of information communication technology within service delivery may facilitate its improved use during the current landscape, and amidst future pandemics.
Cryptography is the method of hiding the contents of a message, used from ancient times to the present. Encryption (or enciphering) is the process by which a plaintext (or cleartext) message is disguised sufficiently to hide the substance of the content. As well as ordinary text, a plaintext message can be a stream of binary digits, a text file, a bitmap, a recording of sound in digital format, audio images of a video or film and any other information formed into digital bits. When a message has been encrypted, it is known as ciphertext or a cryptogram. The opposite procedure, that of turning the ciphertext back into plaintext, is called decryption (or deciphering). In essence, contemporary cryptographic systems change one set of symbols that have meaning (binary data) into a second set of symbols that has no meaning, by means of a mathematical process. Cryptography is usually required to undertake a number of functions, the most important of which is authenticity, rather than secrecy. These functions are discussed below.
Objectives: To report on direct experiences from advanced head and neck cancer patients, family carers and healthcare professionals, and the barriers to integrating specialist palliative care. Methods: Using a naturalistic, interpretative approach, within Northwest England, a purposive sample of adult head and neck cancer patients was selected. Their family carers were invited to participate. Healthcare professionals (representing head and neck surgery and specialist nursing; oncology; specialist palliative care; general practice and community nursing) were recruited. All participants underwent face-to-face or telephone interviews. A thematic approach, using a modified version of Colazzi’s framework, was used to analyze the data. Results: Seventeen interviews were conducted (9 patients, 4 joint with family carers and 8 healthcare professionals). Two main barriers were identified by healthcare professionals: “lack of consensus about timing of Specialist Palliative Care engagement” and “high stake decisions with uncertainty about treatment outcome.” The main barrier identified by patients and family carers was “lack of preparedness when transitioning from curable to incurable disease.” There were 2 overlapping themes from both groups: “uncertainty about meeting psychological needs” and “misconceptions of palliative care.” Conclusions: Head and neck cancer has a less predictable disease trajectory, where complex decisions are made and treatment outcomes are less certain. Specific focus is needed to define the optimal way to initiate Specialist Palliative Care referrals which may differ from those used for the wider cancer population. Clearer ways to effectively communicate goals of care are required potentially involving collaboration between Specialist Palliative Care and the wider head and neck cancer team.
Medical education has enjoyed mixed fortunes nurturing professional identity formation (PIF), or how medical students think, feel and act as physicians. New data suggests that structured mentoring programs like the Palliative Medicine Initiative (PMI) may offer a means of developing PIF in a consistent manner. To better understand how a well-established structured research mentoring program shapes PIF, a study of the experiences of PMI mentees is proposed.Acknowledging PIF as a sociocultural construct, a Constructivist approach and Relativist lens were adopted for this study. In the absence of an effective tool, the Ring Theory of Personhood (RToP) and Krishna-Pisupati Model (KPM) model were used to direct this dual Systematic Evidence-Based Approach (Dual-SEBA) study in designing, employing and analysing semi-structured interviews with PMI mentees and mentoring diaries. These served to capture changes in PIF over the course of the PMI's mentoring stages. Transcripts of the interviews and mentoring diaries were concurrently analysed using content and thematic analysis. Complementary themes and categories identified from the Split Approach were combined using the Jigsaw Approach and subsequently compared with mentoring diaries in the Funnelling Process. The domains created framed the discussion.A total of 12 mentee interviews and 17 mentoring diaries were analysed, revealing two domains-PMI as a Community of Practice (CoP) and Identity Formation. The domains confirmed the centrality of a structured CoP capable of facilitating longitudinal mentoring support and supporting the Socialisation Process along the mentoring trajectory whilst cultivating personalised and enduring mentoring relationships.The provision of a consistent mentoring approach and personalised, longitudinal mentoring support guided along the mentoring trajectory by structured mentoring assessments lay the foundations for more effective mentoring programs. The onus must now be on developing assessment tools, such as a KPM-based tool, to guide support and oversight of mentoring relationships.
Admiral nurses use expert knowledge, skills and experience to work with care home staff, residents and families to ensure that person-centred care is delivered. The authors highlight a case study to show how this can be implemented in practice
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