Publications by authors named "Bridget Johnston"

90 Publications

A Portuguese trial using dignity therapy for adults who have a life-threatening disease: Qualitative analysis of generativity documents.

Palliat Support Care 2021 Jun 23:1-7. Epub 2021 Jun 23.

Department of Psychiatry, Research Institute of Oncology and Hematology, Cancer Care Manitoba, Manitoba, Canada.

Objectives: Dignity therapy (DT) is a brief, individualized intervention, which provides terminally ill patients with an opportunity to convey memories, essential disclosures, and prepare a final generativity document. DT addresses psychosocial and existential issues, enhancing a sense of meaning and purpose. Several studies have considered the legacy topics most frequently discussed by patients near the end of life. To date, no Portuguese study has done that analysis.

Method: We conducted a qualitative analysis of 17 generativity documents derived from a randomized controlled trial (RCT). Inductive content analysis was used to identify emerging themes.

Results: From the 39 RCT participants receiving DT, 17 gave consent for their generativity document to undergo qualitative analysis. Nine patients were female; mean age of 65 years, with a range from 46 to 79 years. Seven themes emerged: "Significant people and things"; "Remarkable moments"; "Acknowledgments"; "Reflection on the course of life"; "Personal values"; "Messages left to others"; and "Requests and last wishes".

Significance Of Results: Generativity document analysis provides useful information for patients nearing death, including their remarkable life moments and memories, core values, concerns, and wishes for their loved ones. Being conscious of these dominant themes may allow health providers to support humanized and personalized care to vulnerable patients and their families, enhancing how professionals perceive and respond to personhood within the clinical setting.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1017/S1478951521000754DOI Listing
June 2021

Cutting through the intersections to care for caregivers: Secondary data analysis of a carers support service in Glasgow, Scotland.

Health Soc Care Community 2021 May 31. Epub 2021 May 31.

School of Medicine, Dentistry & Nursing, College of Medical, Veterinary & Life Sciences, University of Glasgow, Glasgow, UK.

As the number of people living longer with life-limiting conditions grows, so too does the number of caregivers and the complexity of the caring role. To understand more about the role and how caregivers can be supported, local and national registers have been created that collect data on caregivers. Our objective was to undertake comparative analysis of female and male adult caregiver assessments from a caregiver database created from a carers support service running in Glasgow, Scotland. Assessments were carried out over a 12-month period (01/04/17-29/03/18). We aimed to identify the prevalence of negative consequences of caring through descriptive statistical, comparative analysis. Seven hundred and eighty-three assessments were eligible for inclusion. In our dataset, 69% were female (n = 552), and 29% were male (n = 231). Female caregivers were more likely to be of working age but unemployed (p = 0.03) and experiencing mental ill-health (p = 0.011). Male caregivers were more likely to be retired (p < 0.001), caring for a parent (p = 0.017) and living with heart disease (p = 0.0004), addiction issues (p = 0.013) or diabetes (p = 0.042) than female caregivers. For caregivers using this support service, female and male caregivers experienced, recognised or reported negative impacts from caring on their personal identity, social life, ability to self-care and relationships similarly. Furthermore, a caregiver whose relationships had been negatively impacted was 13.8 times more likely (p > 0.00) to report a reduction in psychological well-being. Sex disaggregated data are an important consideration for caregiver research due to socio-political influences that impact caring roles and expectations. Disaggregating data by sex allow researchers to understand how the caring role differs between subsets and allow for the development of more targeted, sensitive support.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1111/hsc.13463DOI Listing
May 2021

Florence Nightingale's legacy for clinical academics: A framework analysis of a clinical professorial network and a model for clinical academia.

J Clin Nurs 2021 Apr 2. Epub 2021 Apr 2.

University of Manchester, Manchester, UK.

Background: Clinical academic nursing roles are rare, and clinical academic leadership positions even more scarce. Amongst the United Kingdom (UK) academia, only 3% of nurses who are employed within universities are clinically active. Furthermore, access to research fellowships and research grant funding for nurses in clinical or academic practice is also limited. The work of Florence Nightingale, the original role model for clinical academic nursing, is discussed in terms of how this has shaped and influenced that of clinical academic nurse leaders in modern UK healthcare settings. We analysed case studies with a view to providing exemplars and informing a new model by which to visualise a trajectory of clinical academic careers.

Methods: A Framework analysis of seven exemplar cases was conducted for a network of Clinical Academic Nursing Professors (n = 7), using a structured template. Independent analysis highlighted shared features of the roles: (a) model of clinical academic practice, (b) infrastructure for the post, (c) capacity-building initiatives, (d) strategic influence, (e) wider influence, (f) local and national implementation initiatives, (g) research area and focus and (h) impact and contribution.

Findings: All seven of the professors of nursing involved in this discourse were based in both universities and healthcare organisations in an equal split. All had national and international profiles in their specialist clinical areas and were implementing innovation in their clinical and teaching settings through boundary spanning. We outline a model for career trajectories in clinical academia, and how leadership is crucial.

Conclusion: The model outlined emphasises the different stages of clinical academic roles in nursing. Nursing as a discipline needs to embrace the value of these roles, which have great potential to raise the standards of healthcare and the status of the profession.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1111/jocn.15756DOI Listing
April 2021

Health system foundations for Sláintecare implementation in 2020 and beyond - co-producing a Sláintecare Living Implementation Framework with Evaluation: Learning from the Irish health system's response to COVID-19. A mixed-methods study protocol.

HRB Open Res 2020 30;3:70. Epub 2020 Sep 30.

Centre for Health Policy and Management, School of Medicine, Trinity College Dublin, Trinity, Dublin 2, Ireland.

All over the world, health systems are responding to the major shock of the COVID-19 pandemic. The virus is causing urgent and fast-paced change in the delivery of health and social care as well as highlighting pre-existing deficiencies and inequalities in the health system and broader society. In Ireland, COVID-19 is occurring during the second full year of Sláintecare's implementation - Ireland's 10-year plan for health reform to deliver universal access to timely, integrated care. This research will coproduce a Living Implementation Framework with Evaluation (LIFE) linking evidence, policy and practice that feeds into real-world Sláintecare implementation. In partnership with senior leadership in the Sláintecare Programme Implementation Office, the Department of Health and the HSE, the researchers will scope, document, measure and analyse the Sláintecare relevant COVID-19 responses using qualitative and quantitative methods. The LIFE will initially take the form of a live spreadsheet which contains the COVID-19 responses most relevant to Sláintecare. For each response, 3-4 indicators will be collected which enables monitoring overtime. The spreadsheet will be accompanied by a series of rapid reviews, narrative descriptions of multiple case studies, research papers, stakeholder engagement and formative feedback. These collectively make up the 'LIFE', informing dialogue with the project partners, which is happening in real time (living), influencing health policy and system decision-making and implementation as the project progresses. The LIFE will inform health system reform in Ireland in the months and years after the emergence of COVID-19 as well as contributing to international health systems and policy research.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.12688/hrbopenres.13150.1DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7934093PMC
September 2020

Effectiveness and cost-effectiveness of out-of-hours palliative care: a systematic review.

HRB Open Res 2020 13;3. Epub 2020 Mar 13.

Centre for Health Policy and Management, Trinity College Dublin, University of Dublin, Dublin, D2, Ireland.

Out-of-hours palliative care is a priority for patients, caregivers and policymakers. Approximately three quarters of the week occurs outside of typical working hours, and the need for support in care of serious and terminal illness during these times is commonplace. Evidence on relevant interventions is unclear. To review systematically the evidence on the effect of out-of-hours specialist or generalist palliative care for adults on patient and caregiver outcomes, and costs and cost-effectiveness. A systematic review of peer-reviewed and grey literature was conducted. We searched Embase, MEDLINE [Ovid], Cochrane Library, CINAHL, Allied and Complementary Medicine [Ovid], PsycINFO, Web of Science, Scopus, EconLit (Ovid), and grey literature published between 1 January 2000 and 12 November 2019. Studies that comparatively evaluated the effect of out-of-hours specialist or generalist palliative care for adults on patient and caregiver outcomes, and on costs and cost-effectiveness were eligible, irrespective of design. Only English-language studies were eligible. Two reviewers independently examined the returned studies at each stage (title and abstract review, full-text review, and quality assessment). We identified one eligible peer-reviewed study, judged as insufficient quality. Other sources returned no eligible material. The systematic review therefore included no studies. The importance of integrated, 24-hour care for people in line with a palliative care approach is not reflected in the literature, which lacks evidence on the effects of interventions provided outside typical working hours. PROSPERO CRD42018111041.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.12688/hrbopenres.13006.1DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7845148PMC
March 2020

Sláintecare implementation status in 2020: Limited progress with entitlement expansion.

Health Policy 2021 03 28;125(3):277-283. Epub 2021 Jan 28.

Centre for Health Policy and Management, Trinity College Dublin, Ireland.

The Sláintecare report developed by political consensus sets out a ten year plan for achieving Universal Health Care (UHC) in Ireland. This paper evaluates the design and progress of the report to mid 2020, but with some reflection on the new COVID 19 era, particularly as it relates to the expansion of entitlements to achieve UHC. The authors explore how close Sláintecare is to the UHC ideal. They also review the phased strategy of implementation in Sláintecare that utilises a systems-thinking approach with interlinkages between entitlements, funding, capacity and implementation. Finally the authors review the Sláintecare milestones against the reality of implementation since the publication of the report in 2017, cognisant of government policy and practice. Some of the initial assumptions around the context of Sláintecare were not realised and there has been limited progress made toward expanding entitlements, and certainly short of the original plan. Nevertheless there have been positive developments in that there is evidence that Government's Implementation Strategy and Action Plans are focussing on reforming a complex adaptive system rather than implementing a blueprint with such initiatives as integrated care pilots and citizen engagement. The authors find that this may help the system change but it risks losing some of the essential elements of entitlement expansion in favour of organisational change.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1016/j.healthpol.2021.01.009DOI Listing
March 2021

COVID-19: using 'knitted hearts' in end-of-life care to enable continuing bonds and memory making.

Int J Palliat Nurs 2020 Dec;26(8):391-393

Associate Chief Nurse, NHS Greater Glasgow and Clyde.

View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.12968/ijpn.2020.26.8.391DOI Listing
December 2020

Caring, sharing, preparing and declaring: how do hospices support prisons to provide palliative and end of life care? A qualitative descriptive study using telephone interviews.

Palliat Med 2021 03 10;35(3):563-573. Epub 2020 Dec 10.

School of Medicine, Dentistry and Nursing, University of Glasgow, Glasgow, UK.

Background: Older adults in prison have complex healthcare needs, and many will need palliative care before their sentence ends. Compared with prison-based hospices, little is known about the role played by community-based hospices in providing palliative care to people in prison.

Aim: To describe the roles Scottish hospices have adopted to support prisons to provide palliative care, and to discuss the international relevance of these findings in addressing the knowledge gap around community hospices supporting people in prison.

Design: A qualitative descriptive study using semi-structured telephone interviews.

Setting/participants: Representatives from all Scottish adult hospices were invited to take part in a short telephone interview and all ( = 17) participated.

Results: Four roles were identified: and Most hospices employed different combinations of roles. Five (30%) hospices were engaged in (providing direct care at the prison or the hospice). Eleven (65%) hospices were engaged in (supporting the prison by sharing knowledge and expertise). Eleven (65%) hospices were engaged in (making preparations to support prisons). All seventeen hospices were described as (expressing a willingness to engage with prisons to provide care).

Conclusions: There are differences and similarities in the way countries provide palliative care to people in prison: many are similar to Scotland in that they do not operate prison-based hospices. Variations exist in the level of support hospices provide. Ensuring that all people in prison have equitable access to palliative care will require close collaboration between prisons and hospices on a national level.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1177/0269216320979194DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7975864PMC
March 2021

Associations between informal care costs, care quality, carer rewards, burden and subsequent grief: the international, access, rights and empowerment mortality follow-back study of the last 3 months of life (IARE I study).

BMC Med 2020 11 3;18(1):344. Epub 2020 Nov 3.

Department of Palliative Care, Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King's College London, Bessemer Road, London, SE5 9PJ, UK.

Background: At the end of life, formal care costs are high. Informal care (IC) costs, and their effects on outcomes, are not known. This study aimed to determine the IC costs for older adults in the last 3 months of life, and their relationships with outcomes, adjusting for care quality.

Methods: Mortality follow-back postal survey.

Setting: Palliative care services in England (London), Ireland (Dublin) and the USA (New York, San Francisco).

Participants: Informal carers (ICrs) of decedents who had received palliative care.

Data: ICrs reported hours and activities, care quality, positive aspects and burdens of caregiving, and completed the Texas Revised Inventory of Grief (TRIG).

Analysis: All costs (formal, informal) were calculated by multiplying reported hours of activities by country-specific costs for that activity. IC costs used country-specific shadow prices, e.g. average hourly wages and unit costs for nursing care. Multivariable logistic regression analysis explored the association of potential explanatory variables, including IC costs and care quality, on three outcomes: positive aspects and burdens of caregiving, and subsequent grief.

Results: We received 767 completed surveys, 245 from London, 282 Dublin, 131 New York and 109 San Francisco. Most respondents were women (70%); average age was 60 years. On average, patients received 66-76 h per week from ICrs for 'being on call', 52-55 h for ICrs being with them, 19-21 h for personal care, 17-21 h for household tasks, 15-18 h for medical procedures and 7-10 h for appointments. Mean (SD) IC costs were as follows: USA $32,468 (28,578), England $36,170 (31,104) and Ireland $43,760 (36,930). IC costs accounted for 58% of total (formal plus informal) costs. Higher IC costs were associated with less grief and more positive perspectives of caregiving. Poor home care was associated with greater caregiver burden.

Conclusions: Costs to informal carers are larger than those to formal care services for people in the last three months of life. If well supported ICrs can play a role in providing care, and this can be done without detriment to them, providing that they are helped. Improving community palliative care and informal carer support should be a focus for future investment.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1186/s12916-020-01768-7DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7606031PMC
November 2020

A mixed methods systematic review of the effects of patient online self-diagnosing in the 'smart-phone society' on the healthcare professional-patient relationship and medical authority.

BMC Med Inform Decis Mak 2020 10 6;20(1):253. Epub 2020 Oct 6.

General Practice and Primary Care, Institute of Health and Wellbeing, College of Medical, Veterinary & Life Sciences University of Glasgow, Glasgow, Scotland.

Background: As technology continues to advance, the internet is becoming increasingly popular. Self-diagnosis and health information seeking online is growing more common and it will be important to understand the influence this may have on the patient-healthcare professional relationship.

Methods: A mixed-method systematic review of quantitative, qualitative and mixed method studies concerning the public and healthcare professionals' perceptions of online self-diagnosis and health information seeking and how this can impact the patient-healthcare professional relationship. We searched MEDLINE, EMBASE, CINAHL, ACM & SCOPUS between 2007 and 2018. Relevant data were extracted, and a thematic analysis was conducted and conceptualised using the Normalisation Process Theory framework.

Results: Of 6107 records identified, 25 articles met the review eligibility criteria which included 16 qualitative, 8 quantitative and 1 mixed method study. The findings indicated that patients found the internet as a complementary information source alongside healthcare professionals. Health care professionals were perceived to be the most reliable and valued information source. People feel responsible for their own health and find the internet to be a source that provides information rapidly with accessibility at their convenience. Most healthcare professionals agreed on the importance of collaboration with patients and the need to develop a partnership and shared decision-making process but struggled to find time in the consultation to do so efficiently. Some healthcare professionals felt that the internet was advantageous for patients looking after their own health, while others felt it was due to a lack of trust in their expertise. Patients tended to present information to the healthcare professional to support the therapeutic relationship rather than to challenge it and to become more involved in the decision-making process of their healthcare.

Conclusion: The results of this review suggests that patients value healthcare professionals as a source of medical advice more than the internet. While health professionals' views were mixed our findings indicate that online health information seeking can potentially improve the patient-healthcare professional relationship as patients reported they usually conducted an online search to form a partnership with the healthcare professional as opposed to trying to prove them wrong.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1186/s12911-020-01243-6DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7539496PMC
October 2020

COVID-19 and Hospital Palliative Care - A service evaluation exploring the symptoms and outcomes of 186 patients and the impact of the pandemic on specialist Hospital Palliative Care.

Palliat Med 2020 10 14;34(9):1256-1262. Epub 2020 Aug 14.

Hospital Palliative Care Team, Queen Elizabeth University Hospital, Glasgow, NHS Greater Glasgow and Clyde, Glasgow, UK.

Background: Patients hospitalised with COVID-19 have increased morbidity and mortality, which requires extensive involvement of specialist Hospital Palliative Care Teams. Evaluating the response to the surge in demand for effective symptom management can enhance provision of Palliative Care in this patient population.

Aim: To characterise the symptom profile, symptom management requirements and outcomes of hospitalised COVID-19 positive patients referred for Palliative Care, and to contextualise Palliative Care demands from COVID-19 against a 'typical' caseload from 2019.

Design: Service evaluation based on a retrospective cohort review of patient records.

Setting/participants: One large health board in Scotland. Demographic data, patient symptoms, drugs/doses for symptom control, and patient outcomes were captured for all COVID-19 positive patients referred to Hospital Palliative Care Teams between 30th March and 26th April 2020.

Results: Our COVID-19 cohort included 186 patients (46% of all referrals). Dyspnoea and agitation were the most prevalent symptoms (median 2 symptoms per patient). 75% of patients were prescribed continuous subcutaneous infusion for symptom control, which was effective in 78.6% of patients. Compared to a 'typical' caseload, the COVID-19 cohort were on caseload for less time (median 2 vs 5 days;  < 0.001) and had a higher death rate (80.6% vs 30.3%;  < 0.001). The COVID-19 cohort replaced 'typical' caseload; overall numbers of referrals were not increased.

Conclusions: Hospitalised COVID-19 positive patients referred for Palliative Care may have a short prognosis, differ from 'typical' caseload, and predominantly suffer from dyspnoea and agitation. Such symptoms can be effectively controlled with standard doses of opioids and benzodiazepines.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1177/0269216320949786DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7429909PMC
October 2020

QALY-time: experts' view on the use of the quality-adjusted LIFE year in COST-effectiveness analysis in palliative care.

BMC Health Serv Res 2020 Jul 16;20(1):659. Epub 2020 Jul 16.

Radboud university medical centre, Department of Anaesthesiology, Pain and Palliative Medicine, Nijmegen, The Netherlands.

Background: The Quality-Adjusted Life Year (QALY) is internationally recognized as standard metric of health outcomes in cost-effectiveness analyses (CEAs) in healthcare. The ongoing debate concerning the appropriateness of its use for decision-making in palliative care has been recently mapped in a review. The aim was to report on and draw conclusions from two expert meetings that reflected on earlier mapped issues in order to reach consensus, and to advise on the QALY's future use in palliative care.

Methods: A nominal group approach was used. In order to facilitate group decision making, three statements regarding the use of the QALY in palliative care were discussed in a structured way. Two groups of international policymakers, healthcare professionals and researchers participated. Data were analysed qualitatively using inductive coding.

Results: 1) Most experts agreed that the recommended measurement tool for the QALYs 'Q' component, the EuroQol-5D (EQ-5D), is inappropriate for palliative care. A more sensitive tool, which might be based on the capabilities approach, could be used or developed. 2) Valuation of time should be incorporated in the 'Q' part, leaving the linear clock time in the 'LY' component. 3) Most experts agreed that the QALY, in its current shape, is not suitable for palliative care.

Conclusions: 1) Although the EQ-5D does not suffice, a generic tool is needed for the QALY. As long as no suitable alternative is available, other tools can be used besides or serve as basis for the EQ-5D because of issues in conceptual overlap. 2) Future research should further investigate the valuation of time issue, and how best to integrate it in the 'Q' component. 3) A generic outcome measure of effectiveness is essential to justly allocate healthcare resources. However, experts emphasized, the QALY is and should be one of multiple criteria for choices in the healthcare insurance package.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1186/s12913-020-05521-xDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7364560PMC
July 2020

An Investigation of the Characteristics of Edentulous Patients Who Choose or Refuse Implant Treatment.

Int J Prosthodont 2021 March/April;34(2):147–153. Epub 2020 Jun 26.

Purpose: To investigate whether pretreatment patient satisfaction, oral health-related quality of life, or diagnostic complexity are predictive of a decision to choose implant treatment.

Materials And Methods: Edentulous patients requesting dentures were enrolled in a prospective observational study. All subjects were provided with conventional dentures and then given the option to proceed with the placement of two mandibular implants and to have their prosthesis modified into an implant overdenture. Subjects were classified according to the Prosthodontic Diagnostic Index (PDI-CE) and asked to complete a Denture Satisfaction Questionnaire and the Oral Health Impact Profile for edentulous patients (OHIP-EDENT) at pretreatment, following the provision of new dentures, and following modification to overdentures.

Results: Of the 125 subjects who had conventional dentures, 15 proceeded with implant treatment. The subjects who decided to have implants were not significantly different in terms of diagnostic complexity or level of satisfaction. Those who chose implants were significantly younger, had newer dentures, and had higher OHIP-EDENT scores at baseline. The most common reason for not being satisfied with dentures but avoiding implants was fear of surgery.

Conclusion: The majority of subjects in this study were satisfied with conventional denture treatment, despite registering its limitations. Subjects who were more anatomically compromised were not more likely to choose implant treatment. It remains to be shown whether fear of surgery can be overcome in order to increase the uptake of implant treatment and improve patient outcomes.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.11607/ijp.6222DOI Listing
April 2021

Living in the moment for people approaching the end of life: A concept analysis.

Int J Nurs Stud 2020 Aug 6;108:103584. Epub 2020 May 6.

School of Medicine, Dentistry and Nursing, University of Glasgow, Glasgow, Scotland, UK; Florence Nightingale Foundation Clinical Professor of Nursing, School of Medicine, Dentistry & Nursing, and NHS Greater Glasgow and Clyde, College of Medical, Veterinary & Life Sciences, University of Glasgow, 57-61 Oakfield Avenue, Glasgow G12 8LL, Scotland, UK. Electronic address:

Background: 'Living in the moment' is an essential part of dignity-conserving practice in end-of-life care settings. Although living in the moment is important for care at the end of life, from the perspective of both the person and their family, there is no clear conceptual understanding of what it represents.

Objective: To explore the concept of 'living in the moment' in the context of dignity-conserving care at the end of life.

Design: A concept analysis.

Data Sources: The databases of Medline, CinAHL, PubMed, Web of Science, PsycINFO, SocINDEX and Cochrane were searched for studies published between 1941 and 2019, and searches of dictionaries and grey literature, as well as hand-searching were conducted, to yield qualitative, mixed methods and systematic reviews published in English, related to the term 'living in the moment'.

Method: The methods of Walker and Avant were used to identify antecedents, attributes and consequences of the concept of 'living in the moment'.

Results: The literature review generated a total of 37 papers for this concept analysis. The attributes identified were (1) simple pleasure, (2) prioritising relationships, (3) living each day to the fullest, (4) maintaining normality, and (5) not worrying about the future. The antecedents were (1) awareness of dying, (2) living with life-threatening illness, (3) positive individual growth, and (4) living with an uncertain future. The consequences were (1) a good quality of life, (2) preserving dignity, and (3) coping with the uncertainty of life.

Conclusions: A universal definition and conceptual model of the main concept, including theoretical relationships between its antecedents, attributes and consequences, was developed. The definition and proposed conceptual model can allow instruments to be developed that measure the effects, existence or attributes of the concept, and identify a theoretical model, and can also lead to new perspectives and strategies for implementation by nurses to improve dignified person-centred care at the end of life.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1016/j.ijnurstu.2020.103584DOI Listing
August 2020

Population-based palliative care planning in Ireland: how many people will live and die with serious illness to 2046?

HRB Open Res 2019 3;2:35. Epub 2019 Dec 3.

Palliative Medicine, Mater Misericordiae University Hospital, Dublin, D07 R2WY, Ireland.

All countries face growing demand for palliative care services.  Projections of need are essential to plan care in an era of demographic change.   We aim to estimate palliative care needs in Ireland from 2016 to 2046. Static modelling of secondary data.  First, we estimate the numbers of people in Ireland who will die from a disease associated with palliative care need.  We combine government statistics on cause of death (2007-2015) and projected mortality (2016-2046).  Second, we combine these statistics with survey data to estimate numbers of people aged 50+ living and dying with diseases associated with palliative care need.  Third, we use these projections and survey data to estimate disability burden, pain prevalence and health care utilisation among people aged 50+ living and dying with serious medical illness. In 2016, the number of people dying annually from a disease indicating palliative care need was estimated as 22,806, and the number of people not in the last year of life aged 50+ with a relevant diagnosis was estimated as 290,185.  Equivalent estimates for 2046 are 40,355 and 548,105, increases of 84% and 89% respectively.  These groups account disproportionately for disability burden, pain prevalence and health care use among older people, meaning that population health burdens and health care use will increase significantly in the next three decades. The global population is ageing, although significant differences in intensity of ageing can be seen between countries. Prevalence of palliative care need in Ireland will nearly double over 30 years, reflecting Ireland's relatively young population.  People living with a serious disease outnumber those in the last year of life by approximately 12:1, necessitating implementation of integrated palliative care across the disease trajectory. Urgent steps on funding, workforce development and service provision are required to address these challenges.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.12688/hrbopenres.12975.1DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7017420PMC
December 2019

Valuing palliative care nursing and extending the reach.

Palliat Med 2020 02;34(2):157-159

School of Nursing, Ulster University, Newtownabbey, Northern Ireland.

View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1177/0269216319900083DOI Listing
February 2020

Drivers of care costs and quality in the last 3 months of life among older people receiving palliative care: A multinational mortality follow-back survey across England, Ireland and the United States.

Palliat Med 2020 04 3;34(4):513-523. Epub 2020 Feb 3.

Cicely Saunders Institute, Florence Nightingale Faculty of Nursing, Midwifery & Palliative Care, King's College London, London, UK.

Background: Care costs rise towards the end of life. International comparison of service use, costs and care experiences can inform quality and improve access.

Aim: The aim of this study was to compare health and social care costs, quality and their drivers in the last 3 months of life for older adults across countries. Null hypothesis: no difference between countries.

Design: Mortality follow-back survey. Costs were calculated from carers' reported service use and unit costs.

Setting: Palliative care services in England (London), Ireland (Dublin) and the United States (New York, San Francisco).

Participants: Informal carers of decedents who had received palliative care participated in the study.

Results: A total of 767 questionnaires were returned: 245 in England, 282 in Ireland and 240 in the United States. Mean care costs per person with cancer/non-cancer were US$37,250/US$37,376 (the United States), US$29,065/US$29,411 (Ireland), US$15,347/US$16,631 (England) and differed significantly ( = 25.79/14.27,  < 0.000). Cost distributions differed and were most homogeneous in England. In all countries, hospital care accounted for > 80% of total care costs; community care 6%-16%, palliative care 1%-15%; 10% of decedents used ~30% of total care costs. Being a high-cost user was associated with older age (>80 years), facing financial difficulties and poor experiences of home care, but not with having cancer or multimorbidity. Palliative care services consistently had the highest satisfaction.

Conclusion: Poverty and poor home care drove high costs, suggesting that improving community palliative care may improve care value, especially as palliative care expenditure was low. Major diagnostic variables were not cost drivers. Care costs in the United States were high and highly variable, suggesting that high-cost low-value care may be prevalent.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1177/0269216319896745DOI Listing
April 2020

Palliative and end of life care in prisons: a mixed-methods rapid review of the literature from 2014-2018.

BMJ Open 2019 12 23;9(12):e033905. Epub 2019 Dec 23.

School of Medicine, Dentistry and Nursing, University of Glasgow, Glasgow, UK

Objectives: To explore current practice in relation to palliative and end of life care in prisons, and to make recommendations for its future provision.

Design: A rapid literature review of studies using qualitative, quantitative and mixed-methods, with a narrative synthesis of results.

Data Sources: Six databases searched between January 2014 to December 2018: ASSIA, CINAHL, Embase, MEDLINE, National Criminal Justice Reference Service Abstracts and Scopus.

Eligibility Criteria: Primary research articles reporting qualitative or quantitative findings about palliative and end of life care in prisons, published in peer-reviewed, English language journals between January 2014 to December 2018.

Participants: Prisoners, prisoners' families, prison healthcare staff and other prison staff.

Data Extraction/synthesis: Data extracted included: citation, design, aim, setting, sample/population, methods and key findings. Data were analysed thematically then subject to a narrative synthesis in order to answer the research questions.

Quality Appraisal: Two researchers independently appraised articles using the Qualsyst tool, by Kmet (2004). Aggregate summary quality scores are included with findings. Articles were not excluded based on quality appraisal.

Results: 23 articles were included (16 qualitative, 6 quantitative, 1 mixed methods). Top three findings (by prevalence) were: fostering relationships with people both inside and outside of prison is important to prisoners with palliative and end of life care needs, inmate hospice volunteers are able to build and maintain close relationships with the prisoners they care for and the conflicting priorities of care and custody can have a negative impact on the delivery of palliative and end of life care in prisons.

Conclusions: The key findings are: relationships are important to prisoners at the end of life, inmate hospice volunteers can build close bonds with the prisoners in their care and the prison environment and regime conflicts with best practices in palliative and end of life care. Directions for future research are also identified.

Prospero Registration Number: PROSPERO ID: CRD42019118737. Registered January 2019.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1136/bmjopen-2019-033905DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7008433PMC
December 2019

Core Patient-Reported Outcomes (PROs) and PRO Measures (PROMs) for Polypharmacy Medicines Reviews: A Sequential Mixed-Methods Study.

Patient Prefer Adherence 2019 13;13:2071-2087. Epub 2019 Dec 13.

School of Medicine, Dentistry & Nursing, College of Medicine, Veterinary & Life Sciences, University of Glasgow, Glasgow, UK.

Purpose: Problematic polypharmacy can exaggerate "medicine burden" for the patient. Patient-reported outcomes (PROs) are key indicators of medicine burden, and PRO measures (PROMs) can help patients articulate their perceptions of medicine burden. We aimed to: (a) evaluate what PROMs currently exist that assess medicine burden, and what PROs they target, and (b) understand patients' experiences with using multiple medicines to establish a core set of most meaningful and relevant PROs for assessment in polypharmacy medicines reviews.

Patients And Methods: We conducted a prospective, sequential mixed-methods study in two consecutive work phases. Phase 1 involved a rapid review of PROMs, informed by the published PRISMA and COSMIN initiative guidelines. We integrated all evidence in a thematic narrative synthesis. Phase 2 involved cross-sectional, one-to-one, semi-structured interviews with key stakeholders, including members of the public and healthcare professionals (HCPs). We conducted thematic content analysis to identify and classify emerging PROs.

Results: In Phase 1, 13 studies described the development and/or validation of 12 PROMs. The PROMs targeted 14 content domains of adult patients' experiences with prescribed medicines. PROMs varied widely in terms of length, comprehensiveness and psychometric robustness. In Phase 2, all participants (seven members of the public; eight HCPs) agreed on the clinical relevance of PROMs, providing a rich account of justifications. We identified four core PROs: 'Knowledge, information and communication about own medicines'; "Perceptions, views and attitudes about (own) medicines"; "Impact on daily living: Side-effects and practicalities", and "Medicine usage: 'as planned', misuse, abuse, no use".

Conclusion: We suggest combining psychometrically robust PROMs or domains across PROMs into a bespoke PROM that addresses comprehensively and succinctly the four core PROs. We recommend a careful implementation process that must involve consultation with all relevant stakeholders, while establishing a clear purpose for collecting a PROM and realistic and ongoing collection at key time-points.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.2147/PPA.S236122DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6916699PMC
December 2019

Measuring the success of interventions for caregivers: a focussed systematic review.

Curr Opin Support Palliat Care 2019 12;13(4):351-359

Institute of Cardiovascular of Medical Sciences, University of Glasgow.

Purpose Of Review: The selection and application of outcome measures are fundamental steps in the research process because they inform decisions around intervention efficacy. We aimed to describe the outcomes used in trials of supportive interventions for adult caregivers of people with three exemplar life-limiting conditions: heart failure, dementia or stroke.

Recent Findings: We performed a focussed review of 134 published trials that included interventions designed to improve caregivers' health and wellbeing and/or ability to function in their caring role. We extracted and categorized all caregiver outcomes described in the studies. We identified inconsistency in the outcomes measured; frequent use of bespoke and adapted tools (29% of outcomes were bespoke), and a lack of clarity in outcome priorities (the mean number of outcomes per trial was four [range: 1-11]). Outcome scales that purport to measure the psychological impact of the caring role were the most popular tools in all three caregiver groups.

Summary: Outcomes used in trials related to adult caregivers are characterized by inconsistencies in outcome measure selection and assessment. This heterogeneity complicates comparisons of treatments and attempts to pool data.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1097/SPC.0000000000000461DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6867664PMC
December 2019

What information and resources do carers require pre and post bereavement in the acute hospital setting? A rapid review.

Curr Opin Support Palliat Care 2019 12;13(4):328-336

NHS Greater Glasgow and Clyde, Glasgow.

Purpose Of Review: This mixed-method, rapid review of published research from 2014 to 2019 aims to explore the experiences of pre and postbereaved carers, and the information that they receive in the acute hospital setting. The quality of articles was evaluated using a standardized quality matrix. The techniques of conceptual analysis and idea mapping were used to create a structured synthesis of the findings.

Recent Findings: From the initial search of 432 articles, ten studies met the inclusion criteria for this review. These studies generated data from 42 patients, 1968 family/carers and 139 healthcare staff. Themes that were generated from a synthesis of the included articles were clear and timely communication, workforce provision and environment.

Summary: This review has highlighted the need for improvements in information provision for carers as part of end of life care. Furthermore, the need for specific staff education and training to enable staff to confidently communicate with dying patients and their relatives in the acute setting is also warranted. Understanding and addressing gaps in knowledge and practice are essential to develop strategies in this complex area. Simple strategies can be implemented to improve the care of carers both pre and post bereavement in acute care.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1097/SPC.0000000000000462DOI Listing
December 2019

Death rattle: reassuring harbinger of imminent death or a perfect example of inadequacies in evidence-based practice.

Curr Opin Support Palliat Care 2019 12;13(4):380-383

School of Medicine, Dentistry & Nursing, College of Medical, Veterinary & Life Sciences, University of Glasgow , Glasgow.

Purpose Of Review: Death is the inevitable consequence of life. Although clinicians are unlikely to accurately pinpoint when death is likely to occur in the people they care for, the death in a person with a diagnosis of malignant and nonmalignant tends to involve a period of predictable progressive clinical and functional deterioration. During this time, it is common for death rattle to occur. Due to its presentation, death rattle can cause stress and distress to caregivers. This often prompts clinicians to consider medical interventions that are not only ineffective in treating the problem but may also do harm.

Recent Findings: There is a dearth of research related to the management of death rattle.

Summary: The article discusses the existing evidence in the management of death rattle, considerations for clinicians in the absence of reliable evidence and suggests areas for future research.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1097/SPC.0000000000000463DOI Listing
December 2019

Variation in resource allocation in urgent and emergency Care Systems in Ireland.

BMC Health Serv Res 2019 Sep 11;19(1):657. Epub 2019 Sep 11.

Department of Epidemiology and Public Health, University College Cork, Cork, Ireland.

Background: A key challenge for most systems is how to provide effective access to urgent and emergency care across rural and urban populations. Tensions about the placement and scope of hospital emergency services are longstanding in Irish political life and there has been recent reform to centralise hospital services in some regions. The focus of this paper is a system approach to examine the geographic variation in resourcing and utilisation of such care across GP practices, out-of-hours care, ambulance services, Emergency Departments and Local Injury Units in Ireland.

Methods: We used a cross-sectional study design to evaluate variation in resource allocation by aggregating geographic funding to various elements of the urgent and emergency care system and assessing patterns in hospital resource utilisation across the population. Expenditure, staffing, access and activity data were gathered from government sources, individual facilities and service providers, health professional bodies, private firms and central statistics. Data on costs and activity in 2014 are collated and presented at both county and regional levels. Analyses focus on resources spent on urgent and emergency care across geographic areas, the role of population concentration in allocation, the relationship between pre-hospital spending and in-hospital spending, and the utilisation of hospital-based emergency care resources by residents of each county.

Results: An array of funding mechanisms exists, resulting in a fragmented approach to the resourcing of urgent and emergency care. There are large differences in spending per capita at the county-level, ranging from between €50 and €200 per capita; however, these are less pronounced regionally. Distribution of hospital emergency care resources is highly skewed to the North East of the country, and away from the recently reconfigured South and Mid-West regions.

Conclusions: This analysis advances the traditional approach of evaluating individual services or hospital resourcing. There are notable differences in utilisation of hospital-based emergency care resources at the regional level, indicating that populations within those regions which have been reconfigured have lower utilisation of hospital resources. There is a clear case for more integration in decision-making around funding and consideration of key principles, such as equity, to guide that process.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1186/s12913-019-4504-4DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6737720PMC
September 2019

Private health expenditure in Ireland: Assessing the affordability of private financing of health care.

Health Policy 2019 10 9;123(10):963-969. Epub 2019 Aug 9.

Centre for Health Policy and Management, Trinity College Dublin, 2-4 Foster Place, Dublin 2, Ireland.

This paper investigates the affordability of private health expenditure among Irish households and the services contributing towards financial hardship. We use data from the Irish Household Budget Survey, a representative survey of household spending in Ireland, covering 2009-10 and 2015-16. Private health expenditure comprises out-of-pocket payments for health and social care services and private health insurance (PHI) premiums. The poverty threshold is 60% of median total equivalised consumption and households with consumption below this level were defined as poor. Households were classified as having unaffordable health expenditure if: 1) they were poor and reported any spending; 2) they were pushed below poverty threshold by health spending; or 3) their spending on health exceeded 40% of capacity to pay. Despite signs of economic recovery, the incidence of unaffordable private health spending increased over the years-from 15% in 2009-10 to 18.8% in 2015-16. People on low incomes were disproportionately affected. The largest component of unaffordable spending for poorer households is PHI and not user charges, which have actually fallen as a cause of hardship. Our findings indicate that reliance on private health expenditure as a funding mechanism undermines the fundamental goals of equity and appropriate access within the health care system.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1016/j.healthpol.2019.08.002DOI Listing
October 2019

Evidence-based palliative care: How can we account for the messy world of practice?

Palliat Med 2019 07;33(7):723-725

4 College of Nursing and Health Sciences, Flinders University, Adelaide, South Australia, Australia.

View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1177/0269216319845977DOI Listing
July 2019

Multiple and multidimensional life transitions in the context of life-limiting health conditions: longitudinal study focussing on perspectives of young adults, families and professionals.

BMC Palliat Care 2019 Mar 25;18(1):30. Epub 2019 Mar 25.

Independent Counselling Psychologist, Glasgow, UK.

Background: There is a dearth of literature that investigates life transitions of young adults (YAs) with life-limiting conditions, families and professionals. The scant literature that is available has methodological limitations, including not listening to the voice of YAs, collecting data retrospectively, at one time point, from one group's perspective and single case studies. The aim of this study was to address the gaps found in our literature review and provide a clearer understanding of the multiple and multi-dimensional life transitions experienced by YAs and significant others, over a period of time.

Methods: This qualitative study used a longitudinal design and data were collected using semi-structured interviews over a 6-month period at 3 time points. Participants included 12 YAs with life-limiting conditions and their nominated significant others (10 family members and 11 professionals). Data were analysed using a thematic analysis approach.

Results: Life transitions of YA and significant others are complex; they experience multiple and multi-dimensional transitions across several domains. The findings challenge the notion that all life transitions are triggered by health transitions of YAs, and has highlighted environmental factors (attitudinal and systemic) that can be changed to facilitate smoother transitions in various aspects of their lives.

Conclusions: This study makes a unique and significant contribution to literature. It provides evidence and rich narratives for policy makers and service providers to change policies and practices that are in line with the needs of YAs with life-limiting conditions as they transition to adulthood. Families and professionals have specific training needs that have not yet been met fully.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1186/s12904-019-0414-9DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6434813PMC
March 2019

Differential Diagnosis Decision Support Systems in Primary and Out-of-Hours Care: A Qualitative Analysis of the Needs of Key Stakeholders in Scotland.

J Prim Care Community Health 2019 Jan-Dec;10:2150132719829315

1 University of Glasgow, Glasgow, UK.

Background: Differential Diagnosis Decision Support Systems (DDDSS) and other forms of clinical decision support systems may have a role in supporting clinicians and the public in making decisions about differential diagnosis and accessing health care services. The aim of this qualitative, focus group study was to explore the needs of out-of-hours and primary care clinicians, and members of the public in relation to DDDSS.

Methods: Twenty-nine participants (comprising 13 advanced nurse practitioners [ANPs], 7 general practitioners [GPs], 2 allied health professional advanced practitioners [AAPs], and 7 members of the public) took part in 1 of 6 focus groups. Data were audio-recorded, transcribed, and analyzed thematically.

Results: Four themes were identified: (1) Current Practice, (2) Attitudes to DDDSS, (3) Implementation Considerations, and (4) Desirable Characteristics of DDDSS.

Discussion: There may be a role for differential diagnosis decision support systems in supporting clinicians and members of the public; however, it is important that the needs of these groups are considered when designing or implementing any clinical decision support system in primary or out-of-hours care. More research is needed into how these systems could be used within clinical practice.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1177/2150132719829315DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6378480PMC
June 2020

Nursing in an age of multimorbidity.

BMC Nurs 2018 29;17:49. Epub 2018 Nov 29.

4School of Medicine, Dentistry and Nursing, University of Glasgow, Glasgow, UK.

Background: A changing sociodemographic landscape has seen rising numbers of people with two or more long-term health conditions. Multimorbidity presents numerous challenges for patients and families and those who work in healthcare services. Therefore, the nursing profession needs to understand the issues involved in supporting people with multiple chronic conditions and how to prepare the future workforce to care for them.

Methods: A descriptive, exploratory study was used to examine the future of nursing in an age of multimorbidity. An hour-long Twitter chat was organised and run by the Florence Nightingale Foundation Chairs of Clinical Nursing Practice Research to discuss this important area of practice and identify what needs to be done to adequately upskill and prepare the nursing profession to care for individuals with more than one long-term illness. Questions were formulated in advance to provide some structure to the online discussion. Data were collected and analysed from the social media platform using NVivo and an analytics tool called Keyhole. Descriptive statistics were used to describe participants and thematic analysis aided the identification of key themes.

Results: Twenty-four people, from a range of nursing backgrounds and organisations, took part in the social media discussion. Five themes encompassing coping with treatment burden, delivering holistic care, developing an evidence base, stimulating learning and redesigning health services were seen as key to ensuring nurses could care for people with multimorbidity and prevent others from developing chronic health conditions.

Conclusions: Multimorbidity is a pressing health issue in today's society. Changes in nursing research, education and practice are required to help the profession work collaboratively with patients, families and multidisciplinary teams to better manage and prevent chronic illness now and in the future.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1186/s12912-018-0321-zDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6267844PMC
November 2018
-->