Bridget Johnston

Telehealth in palliative care in the UK: a review of the evidence

We reviewed telehealth applications which were being used in palliative care settings in the UK. Electronic database searches (Medline, CINAHL, PsychInfo and Embase), searches of the grey literature and cited author searches were conducted. In total, 111 papers were identified and 21 documents were included in the review. Telehealth was being used by a range of health professionals in oncology care settings that included specialist palliative care, hospices, primary care settings, nursing homes and hospitals as well as patients and carers. The most common applications were: out-of-hours telephone support, advice services for palliative care patients, carers and health professionals, videoconferencing for interactive case discussions, consultations and assessments, and training and education of palliative care and other health-care staff. The review suggests that current technology is usable and acceptable to patients and health professionals in palliative care settings. However, there are several challenges in integrating telehealth into routine practice.

Self-care and end of life care—patients' and carers' experience a qualitative study utilising serial triangulated interviews

PurposeThis study aimed to understand patient and carer experiences of end of life care and to explore how patients care for themselves at the end of life in Scotland. Research questions: (1) From the perspectives of patients and carers, what are their experience of advanced cancer and end of life care? (2) What self-care strategies enable patient and carers to cope with their end of life care?MethodsThis paper reports a qualitative study using in-depth, unstructured serial interviews involving collaboration with and participation of people affected by advanced cancer. The study was a 2-year, three-phase study with multiple methods of data collection. The study was conducted in the Highlands and West of Scotland including rural, remote and socially deprived areas. Patient experience data were collected from 20 patients as well as their main carer and the health professional who they perceived had given them the most support. Triangulating data in this way allowed the totality of the patient experience to be captured. A total of 71 interviews were conducted. Data were analysed both within and across cases using framework analysis with the aid of QSR NVIVO 7.ResultsMaintaining normality and preparing for death were the two most important areas, for the patients in the study, as far as their self-care was concerned. Patients wished support that enabled them to maintain their independence and remain at home. People managed their illness both physically and emotionally; managing and adjusting to their lack of independence and keeping control were keys to most participants.ConclusionsSelf-care is important to this group of people. People receiving end of life care want to and are able to engage in research. The findings are timely and relevant to current changes in palliative care policy and practice.

Development of a Novel Remote Patient Monitoring System: The Advanced Symptom Management System for Radiotherapy to Improve the Symptom Experience of Patients With Lung Cancer Receiving Radiotherapy

Background: The use of technology-enhanced patient-reported outcome measures to monitor the symptoms experienced by people with cancer is an effective way to offer timely care. Objective: This study aimed to (a) explore the feasibility and acceptability of the Advanced Symptom Management System with patients with lung cancer receiving radiotherapy and clinicians involved in their care and (b) assess changes in patient outcomes during implementation of the Advanced Symptom Management System with patients with lung cancer receiving radiotherapy in clinical practice. Methods: A repeated-measures, single-arm, mixed-methods study design was used involving poststudy interviews and completion of patient-reported outcome measures at baseline and end of treatment with 16 patients with lung cancer and 13 clinicians who used this mobile phone–based symptom monitoring system. Results: Only rarely did patients report problems in using the handset and they felt that the system covered all relevant symptoms and helped them to manage their symptoms and effectively communicate with clinicians. Clinical improvements in patient anxiety, drowsiness, and self-care self-efficacy were also observed. Clinicians perceived the use of “real-time” risk algorithms and automated self-care advice provided to patients as positively contributing to clinical care. Reducing the complexity of the system was seen as important to promote its utility. Conclusions: Although preliminary, these results suggest that monitoring patient symptoms using mobile technology in the context of radiotherapy for lung cancer is feasible and acceptable in clinical practice. Implications for practice: Future research would be most beneficial if the use of this technology was focused on the postradiotherapy phase and expanded the scope of the system to encompass a wider range of supportive care needs.

Dignity and patient-centred care for people with palliative care needs in the acute hospital setting: A systematic review

Background: A core concept behind patient-centred approaches is the need to treat people with, and preserve, dignity in care settings. People receiving palliative care are one group who may have particularly sensitive needs in terms of their condition, symptoms and life expectancy. Dignity is more likely to be violated in hospital settings. Given the high percentage of people with palliative care needs who are admitted to hospital during their last year of life, the provision of dignity enhancing and preserving care in that setting is of vital importance. Aim: To examine international evidence relating to dignity and person-centred care for people with palliative care needs in the acute hospital setting. Design: A systematic literature review was conducted, incorporating data extraction, analysis and quality appraisal of included papers. Data sources: MEDLINE, CINAHL, PsycINFO, ASSIA, EMBASE, Cochrane Database and Web of Science. Inclusion dates: 1 January 2000–1 April 2014. Eligibility criteria: Adult palliative care, acute care setting, dignity or person-centred care. Results: In all, 33 papers met the inclusion criteria for the review. Papers highlighted the many and varied potential threats to dignity for people with palliative care needs in acute settings, including symptom control and existential distress, approaches and models in care provision and healthcare settings and design. Conclusion: Acute hospital staff require adequate training, including symptom control, and the correct environment in which to deliver dignified and person-centred end-of-life care. Specific models/approaches to care can be beneficial, if adequate training regarding implementation is given. The needs of family members also require consideration, particularly following bereavement.

An evaluation of the use of Telehealth within palliative care settings across Scotland.

There is a lack of evidence-based research in the use of Telehealth within palliative care in the UK, particularly in Scotland. The aim of this project was to evaluate the current use of Telehealth applications within palliative care across Scotland, and how these and future applications are perceived by patients, carers and professionals. This paper reports on the qualitative findings from focus groups with patients and carers in three geographical areas in Scotland, and individual interviews with key stakeholders from across Scotland, who currently work within areas of high and low Telehealth activity. The key findings indicated that Telehealth initiatives are welcomed by patients and carers but that these should be an adjunct to clinical care rather than an alternative. The stakeholder interviews revealed several notable differences between those working within areas of high and low Telehealth activity. Principally, areas of high Telehealth activity appear to be driven by national and local policy and seem to benefit from a greater level of investment in Telehealth equipment and facilities than in the more central, and hence accessible, parts of Scotland.

An exploration of self-management support in the context of palliative nursing: a modified concept analysis

BackgroundThe role of self-management is often ambiguous, yet, it is an important area in clinical practice for palliative nurses. A clear conceptual understanding, however, of what it represents is lacking.MethodThis paper reports an analysis of the concept of self-management support in palliative nursing.Avant and Walker’s method was used to guide this concept analysis.A search of electronic databases (1990–2013), use of internet search engines and supplementary hand searching produced an international data set of reviews, empirical research, editorials, protocols and guidelines.ResultsBased on the analysis self-management support in palliative nursing has been defined as assessing, planning, and implementing appropriate care to enable the patient to live until they die and supporting the patient to be given the means to master or deal with their illness or their effects of their illness themselves.ConclusionsClarity with the concept of self-management support and palliative nursing could enable nurses to provide more patient and family centred care to people facing life threatening illnesses.

Dignity-conserving care in palliative care settings: An integrative review.

AIMS AND OBJECTIVES To report an integrative review of evidence relating to dignity-conserving care in palliative care settings. It will also suggest avenues for future research. BACKGROUND Research suggests that dignity is welcomed by those receiving palliative and end of life care. However, as dignity is a subjective term, it is not always explicit how this may be employed by nurses. Given that the preferred place of care for patients with palliative care needs is the home, the issue of dignity may be particularly important for community nurses. Therefore, synthesising evidence of dignity-conserving care for community nurses caring for people with palliative care needs provides clarity in a complex area of palliative care research. DESIGN Integrative literature review. METHOD The review involved key bibliographic and review databases CINAHL, MEDLINE, EMBASE, ASSIA and PsycInfo. Medical Subject Headings and free terms were undertaken for articles published from January 2009-September 2014 and retrieved papers were assessed against inclusion criteria. Final included articles were reviewed for reported dignity-conserving care actions, which were classified under nine themes of the Dignity Model. RESULTS Thirty-one articles were included. Nine Dignity Model themes were used to classify care actions: Level of Independence; Symptom Distress; Dignity-Conserving Perspectives; Dignity-Conserving Practices; Privacy Boundaries; Social Support; Care Tenor; Burden to Others; and Aftermath Concerns. Reported care actions included listening, conveying empathy, communication and involving patients in care. CONCLUSION Care actions could be classified under most of Dignity Model themes. However, there were less reported care actions related to Level of Independence and Aftermath Concerns, which meant that these had to be formulated independently. Future research should be structured around these areas to determine appropriate care actions for nurses to give dignity-conserving care that addresses these specific themes. RELEVANCE TO CLINICAL PRACTICE Synthesising the available evidence of dignity-conserving care identifies evidence-based care actions and provides guidance to nurses in clinical practice caring for patients with palliative care needs. Future opportunities for research are identified to guide promotion of dignity in palliative care.

The dignified approach to care: a pilot study using the patient dignity question as an intervention to enhance dignity and person-centred care for people with palliative care needs in the acute hospital setting

BackgroundProviding person-centred, dignity-conserving care for hospitalised patients is central to many healthcare policies and essential to the provision of effective palliative care. The Patient Dignity Question (PDQ) “What do I need to know about you as a person to take the best care of you that I can?” was designed from empirical research on patients’ perceptions of their dignity at end of life to help healthcare professionals (HCPs) understand the patient as a person.MethodsThis mixed method pilot study was designed to inform a larger multisite study in the future. It tests the hypothesis that the PDQ intervention could be used to enhance a more person-centred climate for people with palliative care needs in the acute hospital setting, and provide evidence regarding its acceptability. Outcome measures pre and post intervention Person-centred Climate Questionnaire – patient version (PCQ-P), and the Consultation and Relational Empathy (CARE) measure; PDQ feedback questionnaires were used for all participants post intervention, in addition to qualitative interviews.Results30 patients, 17 HCPs, and 4 family members participated. Results showed a positive correlation between higher PCQ-P scores and higher CARE scores, indicating that the PDQ can make improvements to a person-centred environment and levels of empathy perceived by patients. Individual results from the PCQ-P and the CARE indicated overall improvements in the majority of fields. The PDQ supported disclosure of information previously unknown to HCPs, has implications for improving person-centred care. Positive results from PDQ feedback questionnaires were received from all participants.Qualitative findings indicated patients’ appreciation of staff (Attributes and attitudes), that patients wanted staff to have awareness of them (Know me as a person), take the time to talk, and work flexibly, to allow for patient individuality (Time and place).ConclusionThe PDQ has potential to improve patients’ perceptions of care, and HCP attitudes. Furthermore, it was well received by participants. The PDQ could be incorporated into clinical practice for the care of palliative care patients in the acute setting to the benefit of personalized and dignified care.Further research using the PDQ across wider geographical areas, and more diverse settings, would be beneficial.

Costs of formal and informal care in the last year of life for patients in receipt of specialist palliative care

Background: Economic evaluation of palliative care has been slow to develop and the evidence base remains small. Aim: This article estimates formal and informal care costs in the last year of life for a sample of patients who received specialist palliative care in three different areas in Ireland. Design: Formal care costs are calculated for community, specialist palliative care, acute hospital and other services. Where possible, a bottom-up approach is used, multiplying service utilisation by unit cost. Informal care is valued at the replacement cost of care. Setting/participants: Data on utilisation were collected during 215 ‘after death’ telephone interviews with a person centrally involved in the care in the last year of life of decedents who received specialist palliative care in three areas in Ireland with varying levels of specialist palliative care. Results: Mean total formal and informal costs in the last year of life do not vary significantly across the three areas. The components of formal costs, however, do vary across areas, particularly for hospital and specialist palliative care in the last 3 months of life. Conclusion: Costs in the last year of life for patients in receipt of specialist palliative care are considerable. Where inpatient hospice care is available, there are potential savings in hospital costs to offset specialist palliative care inpatient costs. Informal care accounts for a high proportion of costs during the last year of life in each area, underlining the important role of informal caregivers in palliative care.

Constructing identities in the media: newspaper coverage analysis of a major UK Clostridium difficile outbreak

AIM To examine how a major Clostridium difficile outbreak in the UK was represented in the media. BACKGROUND Clostridium difficile is a serious health care-associated infection with significant global prevalence. As major outbreaks have continued to occur worldwide over the last few decades, it has also resulted in increasing media coverage. Newspaper journalists are, however, frequently criticized for sensationalized and inaccurate reporting and alarming the public. Despite such criticisms, nothing is known about how the media frame Clostridium difficile related coverage. DESIGN Qualitative interpretive descriptive study. METHOD An interpretive analysis of newspaper articles from the national press that reported about the outbreak from the first day of coverage over 3 weeks (12 June-3 July 2008). FINDINGS Twenty-eight newspaper articles were included in the study from tabloids, broadsheets, a regional and a Sunday newspaper. Monster and war metaphors were frequently adopted to portray the severity of Clostridium difficile and the impact it can have on patient safety. In addition, the positioning of the affected patients, their families, healthcare professionals and the Government produced representations of victims, villains and heroes. This subsequently evoked notions of vulnerability, blame and conflict. CONCLUSION The media are and will remain critical convectors of public information and, as such, are hugely influential in risk perceptions and responses. Rather than simply dismissing media coverage, further understanding around how such stories in specific contexts are constructed and represented is needed so that it can help inform future communication and management strategies.