Within the Circle of Care: the Patient's Lived Experience of Receiving Palliative Care

<p>I am a Registered Comprehensive Nurse with dual practice interests in the care of terminally ill people, and in quality improvement. This research study originates from my experience of working in a hospice as a clinical nurse then as a quality improvement co-ordinator in the early 1990s. At this time, quality improvement in the health services was relatively new, and there was no locally published research on quality improvement in palliative care. World wide there was a developing body of palliative care quality improvement literature (Higginson 1989, 1993, 1995); however there had been little research undertaken which reflected the patients' perception of the palliative care experience. As a result of my work experience came the quest to find out directly from patients, the aspects of care which they considered valuable. I chose to use the descriptive-phenomenological methodology particularly utilising van Manen's (1990) phenomenological method. This methodology allows the participants' experience to stand apart from existing health professional defined palliative care knowledge, yet provides a way for this participant knowledge to complement and augment it. This descriptive-phenomenological study describes six persons' experience of care within a palliative care setting, and discusses the possible significance that this may have for the practice of palliative care. The participants had at least two care experiences within this setting and were interviewed on one occasion shortly after their discharge, within their own homes. I invited the participants to talk about their care experiences. The anecdotes which the participants relayed, when reflected on, revealed both a pattern of storytelling as well as individual components of care. These components or elements of the care experience as well as informing each other, created a representation, a schematic description of their experience. The representation 'The circle of care', is orientated around the central component of 'identity', with the encircling valued components of care being: 'keeping control', 'being safe', 'chosen isolation', 'mortality awareness', 'relaxation and relinquishment', 'caring qualities', 'being watched' and 'humour'. The circle of 'palliative care philosophy' contained these components, finally being enclosed by an outer circle of the 'spiritual\aesthetic qualities of the environment of care'. The reality of people receiving palliative care is characterised by a number of supportive traditional and non-traditional aspects of caring. Although some characteristics have been described within general health and palliative care literature, some appear to have been generated by these particular participants as part their reality. The selected methodological approach and results limit the study to the context in which it was conducted. However the study suggests that patients are valued informants, and that they are able to augment existing palliative care knowledge. Ideally their input should be sought within the current systems of evaluating existing care and in the creation of new models of care.</p>

Within the Circle of Care: the Patient's Lived Experience of Receiving Palliative Care

<p>I am a Registered Comprehensive Nurse with dual practice interests in the care of terminally ill people, and in quality improvement. This research study originates from my experience of working in a hospice as a clinical nurse then as a quality improvement co-ordinator in the early 1990s. At this time, quality improvement in the health services was relatively new, and there was no locally published research on quality improvement in palliative care. World wide there was a developing body of palliative care quality improvement literature (Higginson 1989, 1993, 1995); however there had been little research undertaken which reflected the patients' perception of the palliative care experience. As a result of my work experience came the quest to find out directly from patients, the aspects of care which they considered valuable. I chose to use the descriptive-phenomenological methodology particularly utilising van Manen's (1990) phenomenological method. This methodology allows the participants' experience to stand apart from existing health professional defined palliative care knowledge, yet provides a way for this participant knowledge to complement and augment it. This descriptive-phenomenological study describes six persons' experience of care within a palliative care setting, and discusses the possible significance that this may have for the practice of palliative care. The participants had at least two care experiences within this setting and were interviewed on one occasion shortly after their discharge, within their own homes. I invited the participants to talk about their care experiences. The anecdotes which the participants relayed, when reflected on, revealed both a pattern of storytelling as well as individual components of care. These components or elements of the care experience as well as informing each other, created a representation, a schematic description of their experience. The representation 'The circle of care', is orientated around the central component of 'identity', with the encircling valued components of care being: 'keeping control', 'being safe', 'chosen isolation', 'mortality awareness', 'relaxation and relinquishment', 'caring qualities', 'being watched' and 'humour'. The circle of 'palliative care philosophy' contained these components, finally being enclosed by an outer circle of the 'spiritual\aesthetic qualities of the environment of care'. The reality of people receiving palliative care is characterised by a number of supportive traditional and non-traditional aspects of caring. Although some characteristics have been described within general health and palliative care literature, some appear to have been generated by these particular participants as part their reality. The selected methodological approach and results limit the study to the context in which it was conducted. However the study suggests that patients are valued informants, and that they are able to augment existing palliative care knowledge. Ideally their input should be sought within the current systems of evaluating existing care and in the creation of new models of care.</p>

113 Simplifying consent - Use of the novel integrated consent model in paediatric clinical research

Primary Subject area Hospital Paediatrics Background Obtaining informed consent from patients to participate in clinical research has traditionally been a cumbersome process, often requiring lengthy documentation and the involvement of trained research staff. Moreover, this process can be a burden to the patient/family. As a result, progress in paediatric research and enabling continual improvement in care has been slow. In the last decade, research ethicists have proposed a new “integrated consent model” (ICM) for obtaining informed consent for pragmatic clinical trials that compare standard-of-care interventions, where there is clinical equipoise. In most cases of ICM, only a brief discussion with verbal consent is required, along with a handout on study purpose, risks, benefits, and procedures. This allows for a more condensed consent process, which maximizes clarity and minimizes information overload. ICM also allows the patient/family to maintain prospective autonomy and decision-making, as compared with deferred or waived consent. The ICM model allows staff in the circle of care to obtain consent, which minimizes the stress of meeting an additional person. To our knowledge, ICM has not yet been used in the paediatric population. Objectives The objective of this abstract is to report on the utility of ICM in a non-randomized clinical trial carried out in the inpatient setting of a tertiary children’s hospital. Design/Methods We compared two widely accepted standards of care for maintaining peripheral intravenous catheter patency in a cohort of children, namely continuous infusion (“to keep the vein open” or TKVO) versus saline lock (SL). The ICM process was reviewed and approved by REB. Nurses in the circle of care received a study package that included an REB approved “consent script” to be read to the patient/family, a single page information sheet, and instructions on documenting the obtained verbal consent in the patient’s chart (Graphic 1). Results With ICM, 79% of participants were recruited into the trial by a nurse. Patient recruitment was completed 4 months ahead of the predicted schedule (Figure 1). Nursing, research, and medical staff were satisfied with ICM and found it easy to administer. ICM occurred smoothly and quickly for patients/families, with no interference with their medical care and practically no disruption to their daily schedule. Conclusion ICM is a practical alternative to laborious traditional consent models, is associated with higher patient recruitment rates, and is less burdensome for the patient/family. Paediatricians should be aware of the utility of this novel consent model.

Digital media may cultivate awareness and responsibility in users: A case for optimism

If every technology has a bias, then the biases of digital communication technologies include broad superficial contact, unreflective behaviours, and tribalism on the one hand, and cosmopolitan attitudes and a wider circle of care on the other hand. Digital media can help develop awareness and responsibility – if humanity consciously works against the dangerous biases of this medium. To maximize the benefits of digital media, we propose that school curricula focus more on understanding cognitive biases, recognizing nuances and postponing judgement. This article describes a theoretical framework for this change in curricula. Challenges to the ideas of this article are addressed in Appendix 2 through ‘Disputation between the Sceptic and the Believer’.

Academic Librarians, Open Access, and the Ethics of Care

This paper explores the value of applying the ethics of care to scholarly communications work, particularly that of open-access (OA) librarians. The ethics of care is a feminist philosophical perspective that sees in the personal a new way to approach other facets of life, including the political and the professional. Care, in this context, is broadly construed as “a species of activity that includes everything we do to maintain, contain, and repair our ‘world’ so that we can live in it as well as possible” (Fisher &amp; Tronto, 1990, p. 40). Joan Tronto outlined four elements of care: attentiveness, responsibility, competence, and responsiveness, and highlighted the value of care beyond the domestic sphere (1993). The ethics of care values care and relationships as instructive ways of framing and examining work, and has been applied in diverse disciplines, including education, nursing, social work, and even business. Several LIS professionals have considered the ethics of care in the context of library technologies (Henry, 2016) and digital humanities (Dohe, 2019), among others. The ethics of care can also provide inspiration for OA librarians as we think about the scope and nature of our work. What could open access librarians learn from the ethics of care? How might our practice change or evolve with the ethics of care as an underpinning philosophy? Who do we include in our circle of care while we undertake our work? The ethics of care provides a more expansive way to think about OA librarianship.

The Miscarriage Circle of Care: Towards Leveraging eHealth for Social Support

Background: Lack of social support during and after miscarriage can greatly affect mental wellbeing. With miscarriages being a common experience, there remains a discrepancy in the social support received after a pregnancy is lost. Method: 42 people who had experienced at least one miscarriage took part in an Asynchronous Remote Community (ARC) study. The study involved 16 activities (discussions, creative tasks, and surveys) in two closed, secret Facebook groups over eight weeks. Descriptive statistics were used to analyse quantitative data, and content analysis was used for qualitative data. Results: There were two main miscarriage care networks, formal (health care providers) and informal (friends, family, work colleagues). The formal care network was the most trusted informational support source, while the informal care network was the main source of tangible support. However, often, participants’ care networks were unable to provide sufficient informational, emotional, esteem, and network support. Peers who also had experienced miscarriage played a crucial role in addressing these gaps in social support. Technology use varied greatly, with smartphone use as the only common denominator. While there was a range of online support sources, participants tended to focus on only a few, and there was no single common preferred source.Discussion: We propose a Miscarriage Circle of Care Model (MCCM), with peer advisors playing a central role in improving communication channels and social support provision. We show how the MCCM can be used to identify gaps in service provision and opportunities where technology can be leveraged to fill those gaps.

Indigenous practitioner vignette

This chapter emphasizes nursing the environment and the family, including their pets, as Connie Paul's advice about nursing in an Indigenous community. It discusses Elder care, which involves consulting Indigenous elders directly, which means protecting their safety as they define it. It also analyzes the reason why consulting with elders in their homes, community, and their environment is important; which has to do with the trauma that many older people in First Nations communities are living with. The chapter cites the Snuneymuxw First Nation health centre that is making changes to the ways that healthcare is provided in order to take the trauma, as well as the existing knowledge of the community, into account. It discusses the provision of care to Indigenous and non-Indigenous clients that increases the circle of care and transforms knowledge to include the wealth of knowledge that resides within the community itself.

The use of personal health information outside the circle of care: consent preferences of patients from an academic health care institution

Background Immense volumes of personal health information (PHI) are required to realize the anticipated benefits of artificial intelligence in clinical medicine. To maintain public trust in medical research, consent policies must evolve to reflect contemporary patient preferences. Methods Patients were invited to complete a 27-item survey focusing on: (a) broad versus specific consent; (b) opt-in versus opt-out approaches; (c) comfort level sharing with different recipients; (d) attitudes towards commercialization; and (e) options to track PHI use and study results. Results 222 participants were included in the analysis; 83% were comfortable sharing PHI with researchers at their own hospital, although younger patients (≤ 49 years) were more uncomfortable than older patients (50 + years; 13% versus 2% uncomfortable, p < 0.05). While 56% of patients preferred broad consent, 38% preferred specific consent; 6% preferred not sharing at all. The majority of patients (63%) preferred to be asked for permission before entry into a contact pool. Again, this trend was more pronounced for younger patients (≤ 49 years: 76%). Approximately half of patients were uncomfortable sharing PHI with commercial enterprises (51% uncomfortable, 27% comfortable, 22% neutral). Most patients preferred to track PHI usage (61%), with the highest proportion once again reported by the youngest patients (≤ 49 years: 71%). A majority of patients also wished to be notified regarding study results (70%). Conclusions While most patients were willing to share their PHI with researchers within their own institution, many preferred a transparent and reciprocal consent process. These data also suggest a generational shift, wherein younger patients preferred more specific consent options. Modernizing consent policies to reflect increased autonomy is crucial in fostering sustained public engagement with medical research.