ObjectivesTo explore the experiences of caregivers of terminally ill patients with delirium, to determine the potential role of caregivers in the management of delirium at the end of life, to identify the support required to improve caregiver experience and to help the caregiver support the patient.MethodsFour electronic databases were searched—PsychInfo, Medline, Cinahl and Scopus from January 2000 to July 2015 using the terms ‘delirium’, ‘terminal restlessness’ or ‘agitated restlessness’ combined with ‘carer’ or ‘caregiver’ or ‘family’ or ‘families’. Thirty‐three papers met the inclusion criteria and remained in the final review.ResultsPapers focused on (i) caregiver experience—distress, deteriorating relationships, balancing the need to relieve suffering with desire to communicate and helplessness versus control; (ii) the caregiver role—detection and prevention of delirium, symptom monitoring and acting as a patient advocate; and (iii) caregiver support—information needs, advice on how to respond to the patient, interventions to improve caregiver outcomes and interventions delivered by caregivers to improve patient outcomes.ConclusionHigh levels of distress are experienced by caregivers of patients with delirium. Distress is heightened because of the potential irreversibility of delirium in palliative care settings and uncertainty around whether the caregiver–patient relationship can be re‐established before death. Caregivers can contribute to the management of patient delirium. Additional intervention studies with informational, emotional and behavioural components are required to improve support for caregivers and to help the caregiver support the patient. Reducing caregiver distress should be a goal of any future intervention.© 2016 The Authors. Psycho‐Oncology Published by John Wiley & Sons Ltd.
This paper deals with one aspect of a major study, namely the meaning of social support, a concept loosely used in research and by practitioners. Grounded theory was adapted and discourse analysis used to retrospectively analyse data collected for a previous study exploring health visitors' support of patients with breast cancer. Patients' diagrams of their social networks illustrated their perceptions of support and strain. Respondents indicated that they faced six threats to their identities associated with the breast cancer experience and perceived social support to be actions/attitudes from formal or informal sources which maintained or assisted changes to their established identities. Social support maintained identities for many respondents who wanted to 'get back to normal' in their relationships and in their work. Women also needed support to accept identity changes, for example, adapting to an uncertain future. This paper focuses on the effects of informal support on identity. Respondents identified seven main types of informal support from various sources. Larger social networks were more likely to provide the different types of support needed. However, social intimacy of close relationships maintained important aspects of women's identities and were indeed part of their identities. Respondents' social contacts sometimes perceived breast cancer as threatening to their own identities and were consequently unsupportive. Informal support was vital for respondents coping with breast cancer. Nurses should help patients maintain and create their own informal support during illness.
Digital health interventions (DHIs) have the potential to improve the accessibility and effectiveness of palliative care but heterogeneity amongst existing systematic reviews presents a challenge for evidence synthesis. This meta-review applied a structured search of ten databases from 2006 to 2020, revealing 21 relevant systematic reviews, encompassing 332 publications. Interventions delivered via videoconferencing (17%), electronic healthcare records (16%) and phone (13%) were most frequently described in studies within reviews. DHIs were typically used in palliative care for education (20%), symptom management (15%), decision-making (13%), information provision or management (13%) and communication (9%). Across all reviews, mostly positive impacts were reported on education, information sharing, decision-making, communication and costs. Impacts on quality of life and physical and psychological symptoms were inconclusive. Applying AMSTAR 2 criteria, most reviews were judged as low quality as they lacked a protocol or did not consider risk of bias, so findings need to be interpreted with caution.
Continuing education is now recognized as essential if nursing is to develop as a profession. United Kingdom Central Council for Nursing, Midwifery and Health Visiting (UKCC) consultations are currently seeking to establish appropriate preparation for a 'higher level of practice' in the United Kingdom. The relevance of Masters level education to developing professional roles merits examination. To this end the results of a 10-year follow-up study of graduates from the Masters programme at the University of Edinburgh are reported. The sample was the entire cohorts of nurses who graduated with a Masters degree in the academic sessions from 1986 to 1996. A postal questionnaire was designed consisting of mainly closed questions to facilitate coding and analysis but also including some open questions to allow for more qualitative data to be elicited. The findings indicated clearly that the possession of an MSc degree opened up job opportunities and where promotion was not identified, the process of study at a higher level was still perceived as relevant to the work environment. This applied as much to the context of clinical practice as to that of management, education or research. The perceived enhancement of clinical practice from a generic Masters programme was considered a significant finding. Also emerging from the data was an associated sense of personal satisfaction and achievement that related to the acquisition of academic skills and the ultimate reward of Masters status. The concept of personal growth, however, emerged as a distinct entity from that of satisfaction and achievement, relating specifically to the concept of intellectual sharing, the broadening of perspectives and the development of advanced powers of reasoning.
BackgroundThe Scottish Government set out its 5-year vision to improve palliative care in its Strategic Framework for Action 2016–2021. This includes a commitment to strengthening research and evidence based knowledge exchange across Scotland. A comprehensive scoping review of Scottish palliative care research was considered an important first step. The aim of the review was to quantify and map palliative care research in Scotland over the ten-year period preceding the new strategy (2006–15).MethodsA systematic scoping review was undertaken. Palliative care research involving at least one co-author from a Scottish institution was eligible for inclusion. Five databases were searched with relevant MeSH terms and keywords; additional papers authored by members of the Scottish Palliative and End of Life Care Research Forum were added.ResultsIn total, 1919 papers were screened, 496 underwent full text review and 308 were retained in the final set. 73% were descriptive studies and 10% were interventions or feasibility studies. The top three areas of research focus were services and settings; experiences and/or needs; and physical symptoms. 58 papers were concerned with palliative care for people with conditions other than cancer – nearly one fifth of all papers published. Few studies focused on ehealth, health economics, out-of-hours and public health. Nearly half of all papers described unfunded research or did not acknowledge a funder (46%).ConclusionsThere was a steady increase in Scottish palliative care research during the decade under review. Research output was strong compared with that reported in an earlier Scottish review (1990–2005) and a similar review of Irish palliative care research (2002–2012). A large amount of descriptive evidence exists on living and dying with chronic progressive illness in Scotland; intervention studies now need to be prioritised. Areas highlighted for future research include palliative interventions for people with non-malignant illness and multi-morbidity; physical and psychological symptom assessment and management; interventions to support carers; and bereavement support. Knowledge exchange activities are required to disseminate research findings to research users and a follow-up review to examine future research progress is recommended.Electronic supplementary materialThe online version of this article (10.1186/s12904-017-0266-0) contains supplementary material, which is available to authorized users.
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