Publications by authors named "Kevin Brazil"

150 Publications

Acceptability of a nurse-led, person-centred, anticipatory care planning intervention for older people at risk of functional decline: A qualitative study.

PLoS One 2021 20;16(5):e0251978. Epub 2021 May 20.

Centre for Evidence and Social Innovation, Queen's University Belfast, Belfast, Northern Ireland, United Kingdom.

Background: As the population of older adults increases, the complexity of care required to support those who choose to remain in the community amplifies. Anticipatory Care Planning (ACP), through earlier identification of healthcare needs, is evidenced to improve quality of life, decrease aggressive interventions, and prolong life. With patient acceptability of growing importance in the design, implementation, and evaluation of healthcare interventions, this study reports on the acceptability of a primary care based ACP intervention on the island of Ireland.

Methods: As part of the evaluation of a feasibility cluster randomized controlled trial (cRCT) testing an ACP intervention for older people at risk of functional decline, intervention participants [n = 34] were interviewed in their homes at 10-week follow-up to determine acceptability. The intervention consisted of home visits by specifically trained registered nurses who assessed participants' health, discussed their health goals and plans, and devised an anticipatory care plan in collaboration with participants' GPs and adjunct clinical pharmacist. Thematic analysis was employed to analyze interview data. The feasibility cRCT involved eight general practitioner (GP) practices as cluster sites, stratified by jurisdiction, four in Northern Ireland (NI) (two intervention, two control), and four in the Republic of Ireland (ROI) (two intervention, two control). Participants were assessed for risk of functional decline. A total of 34 patients received the intervention and 31 received usual care.

Findings: Thematic analysis resulted in five main themes: timing of intervention, understanding of ACP, personality & individual differences, loneliness & social isolation, and views on healthcare provision. These map across the Four Factor Model of Acceptability ('4FMA'), a newly developed conceptual framework comprising four components: intervention factors, personal factors, social support factors, and healthcare provision factors.

Conclusion: Acceptability of this primary care based ACP intervention was high, with nurses' home visits, GP anchorage, multidisciplinary working, personalized approach, and active listening regarded as beneficial. Appropriate timing, and patient health education emerged as vital.
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http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0251978PLOS
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8136649PMC
May 2021

Barriers and facilitators of implementing an antimicrobial stewardship intervention for urinary tract infection in a long-term care facility.

Can Pharm J (Ott) 2021 Mar-Apr;154(2):100-109. Epub 2021 Feb 16.

McMaster University, Hamilton.

Background: Fifty percent of antibiotic courses in long-term care facilities (LTCFs) are unnecessary, leading to increased risk of harm. Most studies to improve antibiotic prescribing in LTCFs showed modest and unsustained results. We aimed to identify facilitators, barriers and strategies in implementing a urinary tract infection (UTI)-focused antimicrobial stewardship (AS) intervention at a LTCF, with the secondary objective of exploring the pharmacist's potential roles.

Methods: The study used a qualitative descriptive design. Participants attended either a focus group or one-on-one interview. Data were analyzed inductively using a codebook modified in an iterative analytic process. Barrier and facilitator themes were mapped using the capability, opportunity, motivation and behaviour (COM-B) model. Similarly, themes were identified from the transcripts regarding the pharmacist's roles.

Results: Sixteen participants were interviewed. Most barriers and facilitators mapped to the opportunities domain of the COM-B model. The main barrier themes were lack of access, lack of knowledge, ineffective communication, lack of resources and external factors, while the main facilitator themes were education, effective collaboration, good communication, sufficient resources and access. For the pharmacist's role, the barrier themes were ineffective collaboration and communication.

Conclusion: This study supports the importance of tailoring interventions to target factors underlying barriers to behaviour change. At this LTCF, an effective antimicrobial stewardship intervention should incorporate strategies to improve access, knowledge, communication and collaboration in its design, having sufficient resources and addressing external factors to optimize its success and long-term sustainability. 2021;154:xx-xx.
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http://dx.doi.org/10.1177/1715163521989756DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8020278PMC
February 2021

Corrigendum to 'Initiating advance care planning on end-of-life issues in dementia: Ambiguity among UK and Dutch physicians' [Archives of Gerontology and Geriatrics 65 (2016) 225-230/AGG 3314].

Arch Gerontol Geriatr 2021 Jul-Aug;95:104382. Epub 2021 Feb 28.

School of Nursing and Midwifery, Queen's University Belfast, 97 Lisburn Road, Belfast BT9 7BL, Northern Ireland, United Kingdom.

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http://dx.doi.org/10.1016/j.archger.2021.104382DOI Listing
February 2021

Challenges for palliative care day services: a focus group study.

BMC Palliat Care 2021 Jan 12;20(1):11. Epub 2021 Jan 12.

Ulster University, Institute of Nursing and Health Research, Shore Road, Newtownabbey, BT37 0QB, Northern Ireland.

Background: Palliative care day services provide a safe environment for people with palliative care needs, enabling them to access a range of services while acting as a respite services for family caregivers. Viewed as marginal services, they are often under resourced and under researched. The aim of this study was to understand how palliative day care services contribute to client care from the perspective of management and hospice multidisciplinary teams.

Methods: A descriptive qualitative study, using six focus groups conducted with staff at three United Kingdom hospices in England, Scotland and Northern Ireland. Thirty-five participants were recruited, including management and staff. Discussions were transcribed and analysed thematically.

Results: Four key themes emerged: (1) variations of care, beyond heterogeneity of patients; (2) unclear referrals and inconsistent patient population; (3) recognising strengths and challenges and (4) an uncertain future. A major focus of group discussions was the model of care and the benefits of the service, however the importance of demonstrating services' effectiveness and value for money was highlighted.

Conclusions: Management and hospice staff believed day-services to be a helpful introduction to palliative care, providing both social and medical support. Economic pressures and patient demand were influencing them to move from a social model to a hybrid model. Further research is needed to understand the effectiveness of the service.
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http://dx.doi.org/10.1186/s12904-020-00699-7DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7802306PMC
January 2021

eHealth interventions for reducing cardiovascular disease risk in men: A systematic review and meta-analysis.

Prev Med 2021 04 31;145:106402. Epub 2020 Dec 31.

School of Nursing and Midwifery, Queen's University Belfast, Belfast, UK; Integrated Care Academy, University of Suffolk, Ipswich, UK. Electronic address:

Men remain at a higher risk of developing cardiovascular disease (CVD) than women and behavioral risk factor modification is an important preventive measure. However, engaging men in behavior change interventions is challenging. Although men often indicate a preference for gender-specific information and support, this rarely occurs. eHealth interventions have the potential to address this gap, though their effectiveness for reducing CVD risk in men is unclear. Therefore, the aim of this systematic review and meta-analysis was to evaluate the effectiveness of eHealth interventions for reducing CVD risk in men. A search of published randomised controlled trials with no date restrictions up to July 2020 was conducted to identify those targeting at least two major CVD risk factors. Nine trials were identified and reviewed. Study quality ranged from low to unclear, with one trial at a high risk of bias. Compared to those in a control group or receiving printed materials, participants randomised to an eHealth intervention had statistically significant improvements in BMI (Z=-2.75, p=0.01), body weight (Z=-3.25, p=0.01), waist circumference (Z=-2.30, p=0.02) and systolic (Z=-3.57, p=0.01) and diastolic (Z=-3.56, p=0.01) blood pressure. Though less evident, there were also improvements in physical activity and diet in favour of the intervention group. This review suggests that eHealth interventions can reduce CVD risk in adult men through behavior change. However, we were unable to determine the association between intervention characteristics and outcomes. Also, overall, participant adherence to the intervention was poor. Both of these issues should be considered in future studies.
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http://dx.doi.org/10.1016/j.ypmed.2020.106402DOI Listing
April 2021

Nurse-led advance care planning with older people who have end-stage kidney disease: feasibility of a deferred entry randomised controlled trial incorporating an economic evaluation and mixed methods process evaluation (ACReDiT).

BMC Nephrol 2020 11 13;21(1):478. Epub 2020 Nov 13.

School of Nursing and Midwifery, Queen's University Belfast, Medical Biology Centre, 97 Lisburn Road, Belfast, BT9 7BL, UK.

Background: Advance Care Planning is recommended for people with end-stage kidney disease but evidence is limited. Robust clinical trials are needed to investigate the impact of advance care planning in this population. There is little available data on cost-effectiveness to guide decision makers in allocating resources for advance care planning. Therefore we sought to determine the feasibility of a randomised controlled trial and to test methods for assessing cost-effectiveness.

Methods: A deferred entry, randomised controlled feasibility trial, incorporating economic and process evaluations, with people with end-stage kidney disease, aged 65 years or older, receiving haemodialysis, in two renal haemodialysis units in Northern Ireland, UK. A nurse facilitator helped the patient make an advance care plan identifying: a surrogate decision-maker; what the participant would like to happen in the future; any advance decision to refuse treatment; preferred place of care at end-of-life.

Results: Recruitment lasted 189 days; intervention and data collection 443 days. Of the 67 patients invited to participate 30 (45%) declined and 36 were randomised to immediate or deferred advance care plan groups. Twenty-two (61%) made an advance care plan and completed data collection at 12 weeks; 17 (47.2%) were able to identify a surrogate willing to be named in the advance care plan document. The intervention was well-received and encouraged end-of-life conversations, but did not succeed in helping patients to fully clarify their values or consider specific treatment choices. There was no significant difference in health system costs between the immediate and deferred groups.

Conclusions: A trial of advance care planning with participants receiving haemodialysis is feasible and acceptable to patients, but challenging. A full trial would require a pool of potential participants five times larger than the number required to complete data collection at 3 months. Widening eligibility criteria to include younger (under 65 years of age) and less frail patients, together with special efforts to engage and retain surrogates may improve recruitment and retention. Traditional advance care planning outcomes may need to be supplemented with those that are defined by patients, helping them to participate with clinicians in making medical decisions.

Trial Registration: Registered December 16, 2015. ClinicalTrials.gov Identifier: NCT02631200 .
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http://dx.doi.org/10.1186/s12882-020-02129-5DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7663906PMC
November 2020

Determining the informational needs of family caregivers of people with intellectual disability who require palliative care: A qualitative study.

Palliat Support Care 2021 Aug;19(4):405-414

Centre for Palliative Care, St Vincent's Hospital and the University of Melbourne, Melbourne, Australia.

Objectives: People with intellectual disabilities are living longer, and many require palliative care. There is a lack of evidence regarding information needs which may exist for their family caregivers. This study aimed to determine the informational needs of family caregivers of people with intellectual disabilities who require palliative care.

Methods: A qualitative, exploratory design was underpinned by the Transactional Model of Stress and Coping and the Transformative Paradigm. The study involved five Health and Social Care (HSC) Trusts and two Hospices in one region of the United Kingdom. Family caregivers (n = 10) participated in individual interviews. HSC professionals' (n = 28) perceptions of informational needs were explored within focus groups (n = 6).

Results: Family caregivers reported information needs chiefly concerning the disease, financial entitlements, and practical support which could change over the disease trajectory. Findings evidence the expertise of long-term family caregivers, prior to the end of life. Palliative care and intellectual disability teams acknowledged their role to work in partnership and facilitate access to information. Recommendations were mapped onto a co-designed logic model.

Significance Of Results: New insights into the specific informational needs of this family caregiving population. A co-designed logic model presents these needs and how they may be addressed. Central co-ordinators have been advocated for these caregivers. This model could have international applicability for similar family carers, supporting people with other disabilities or cognitive impairment, and should be further explored.
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http://dx.doi.org/10.1017/S1478951520001157DOI Listing
August 2021

Exploring the costs, consequences and efficiency of three types of palliative care day services in the UK: a pragmatic before-and-after descriptive cohort study.

BMC Palliat Care 2020 Aug 7;19(1):119. Epub 2020 Aug 7.

Institute of Nursing and Health Research, Ulster University, Newtownabbey, UK.

Background: Palliative Care Day Services (PCDS) offer supportive care to people with advanced, progressive illness who may be approaching the end of life. Despite the growth of PCDS in recent years, evidence of their costs and effects is scarce. It is important to establish the value of such services so that health and care decision-makers can make evidence-based resource allocation decisions. This study examines and estimates the costs and effects of PCDS with different service configurations in three centres across the UK in England, Scotland and Northern Ireland.

Methods: People who had been referred to PCDS were recruited between June 2017 and September 2018. A pragmatic before-and-after descriptive cohort study design analysed data on costs and outcomes. Data on costs were collected on health and care use in the 4 weeks preceding PCDS attendance using adapted versions of the Client Service Receipt Inventory (CSRI). Outcomes, cost per attendee/day and volunteer contribution to PCDS were also estimated. Outcomes included quality of life (MQOL-E), health status (EQ-5D-5L) and capability wellbeing (ICECAP-SCM).

Results: Thirty-eight attendees were recruited and provided data at baseline and 4 weeks (centre 1: n = 8; centre 2: n = 8, centre 3: n = 22). The cost per attendee/day ranged from £121-£190 (excluding volunteer contribution) to £172-£264 (including volunteer contribution) across the three sites. Volunteering constituted between 28 and 38% of the total cost of PCDS provision. There was no significant mean change at 4 week follow-up from baseline for health and care costs (centre 1: £570, centre 2: -£1127, centre 3: £65), or outcomes: MQOL-E (centre 1: - 0.48, centre 2: 0.01, centre 3: 0.24); EQ-5D-5L (centre 1: 0.05, centre 2: 0.03, centre 3: - 0.03) and ICECAP-SCM (centre 1:0.00, centre 2: - 0.01, centre 3: 0.03). Centre costs variation is almost double per attendee when attendance rates are held constant in scenario analysis.

Conclusions: This study highlights the contribution made by volunteers to PCDS provision. There is insufficient evidence on whether outcomes improved, or costs were reduced, in the three different service configurations for PCDS. We suggest how future research may overcome some of the challenges we encountered, to better address questions of cost-effectiveness in PCDS.
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http://dx.doi.org/10.1186/s12904-020-00624-yDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7412842PMC
August 2020

Anticipatory care planning for older adults: a trans-jurisdictional feasibility study.

Br J Gen Pract 2020 Jun;70(suppl 1)

Queens University Belfast.

Background: As the population of older adults' increases, the complexity of care required to support those who choose to remain in the community has also increased. Anticipatory Care Planning (ACP) through earlier identification of healthcare needs is evidenced to improve quality of life, decrease the number of aggressive futile interventions, and even to prolong life.

Aim: To determine the feasibility of a cluster randomised trial to evaluate the implementation and outcomes of Anticipatory Care Planning (ACP) in primary care to assist older adults identified as at risk for functional decline by developing a personalised support plan.

Method: GP practices were randomised into control/intervention groups stratified by jurisdiction [Northern Ireland (UK) and the Republic of Ireland (RoI)], and by setting (urban and rural). Participants were included if they were a) aged ≥70 years, b) 2 or more chronic medical conditions, c) 4 or more prescribed medications. The Anticipatory Care Plan consisted of home visits where the study nurse discussed patients' goals and plans. An action plan was put in place following consultation with patient's GPs and study Pharmacist.

Results: Eight primary care practices participated; four in the UK and four in the RoI. Sample = 64. Data was collected pertaining to patient quality of life, mental health, healthcare utilisation, costs, perception of person-centred care, and the use of potentially inappropriate medication.

Conclusion: Unique insights relating to the trans-jurisdictional delivery of healthcare services in the UK and RoI were observed which has implications on service delivery for older adults.
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http://dx.doi.org/10.3399/bjgp20X711197DOI Listing
June 2020

Anticipatory care planning intervention for older adults at risk of functional decline: study protocol for a primary care cluster feasibility randomised trial.

Trials 2020 Feb 11;21(1):168. Epub 2020 Feb 11.

Royal College of Surgeons in Ireland, 123 St Stephen's Green, Dublin, D02 YN77, Ireland.

Background: The treatment and management of long-term health conditions is the greatest challenge facing health systems around the world today. Innovative approaches to patient care in the community such as Anticipatory Care Planning (ACP), which seek to help with the provision of high-quality comprehensive care to older adults at risk of functional decline, require evaluation. This study will evaluate one approach that will include primary care as the setting for ACP.

Methods/design: This study will help to determine the feasibility for a definitive randomised trial to evaluate the implementation and outcomes of an ACP intervention. The intervention will be delivered by specially trained registered nurses in a primary care setting with older adults identified as at risk of functional decline. The intervention will comprise: (a) information collection via patient assessment; (b) facilitated informed dialogue between the patient, family carer, general practitioner and other healthcare practitioners; and, (c) documentation of the agreed support plan and follow-up review dates. Through a structured consultation with patients and their family carers, the nurses will complete a mutually agreed personalised support plan.

Discussion: This study will determine the feasibility for a full trial protocol to evaluate the implementation and outcomes of an (ACP) intervention in primary care to assist older adults aged 70 years of age or older and assessed as being at risk of functional decline. The study will be implemented in two jurisdictions on the island of Ireland which employ different health systems but which face similar health challenges. This study will allow us to examine important issues, such as the impact of two different healthcare systems on the health of older people and the influence of different legislative interpretations on undertaking cross jurisdictional research in Ireland.

Protocol Version: Version 1, 17 September 2019.

Trial Registration: Clinicaltrials.gov, ID: NCT03902743. Registered on 4 April 2019.
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http://dx.doi.org/10.1186/s13063-020-4100-2DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7014651PMC
February 2020

Informational needs of family caregivers of people with intellectual disability who require palliative care: a two-phase integrative review of the literature.

Int J Palliat Nurs 2019 Jan;25(1):4-18

Lecturer, School of Nursing and Midwifery, Queen's University Belfast, UK.

Background:: People with intellectual disabilities are living longer, with increasingly complex needs and their family caregivers may have a broad scope of unmet needs.

Aims:: To identify the most common needs of family caregivers, to identify gaps in the literature, and distinguish the information needs of family caregivers of people with intellectual disabilities who require palliative care.

Methods:: This two phase literature review used five electronic databases (CINAHL, PsycINFO, Medline, Cochrane and Pubmed). Phase 1 involved a review of systematic reviews of the needs of family caregivers across healthcare settings. Phase 2 explored the commonly reported information needs from phase 1, in relation to family caregivers of people with intellectual disability who require palliative care. There was no research explicit to the information needs of these family caregivers.

Findings:: This review reveals potential information needs which may exist, guided by the palliative caregiving literature; alluding to information needs surrounding the disease, finances, and psychological or practical support.

Conclusion:: It is surmised that a greater scope of informational need exists for this population and further research is pertinent for international healthcare settings.
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http://dx.doi.org/10.12968/ijpn.2019.25.1.4DOI Listing
January 2019

Condition-Specific Pamphlets to Improve End-of-life Communication in Long-term Care: Staff Perceptions on Usability and Use.

J Am Med Dir Assoc 2019 03 21;20(3):262-267. Epub 2018 Dec 21.

Creative Arts Therapies Department, Concordia University, Canada.

Objectives: This article reports findings on the usability and staff use of 5 condition- specific pamphlets of high prevalence in long-term care (LTC): dementia, heart failure, chronic obstructive pulmonary disease, renal failure, and frailty. The pamphlets were created in response to residents', families', and staff's recommendations for activating early reflections and communication about end-of-life care.

Design: A mixed-method (qualitative and quantitative) survey design was used. Step 1 collected survey data on the usability of the pamphlets. Step 2 collected survey data on pamphlet use.

Settings And Participants: Two nurses with specialized palliative care training, 2 resident/family representatives, 10 condition-specific specialists, and 33 LTC palliative leads reviewed the pamphlets for usability prior to distribution. A total of 178 LTC home staff in 4 participating LTC homes reported on pamphlet use.

Measures: Specialists and resident/family representatives were asked to provide open comments and LTC home palliative leads were asked to complete a survey on the accuracy, readability, and relevance of the pamphlets. After 6 months of distribution, all staff in participating LTC homes were asked to complete a survey on pamphlet use, usefulness, and comfort with distribution.

Results: The pamphlets were reportedly accurate, relevant, and easy to understand. Following 6 months of availability, most staff in LTC had read the pamphlets, found the information useful, and planned to share them. However, half of the staff questioned their role in pamphlet distribution and most had not distributed them. Regulated staff (ie, staff affiliated with a regulated profession) expressed more comfort sharing the pamphlets than care aides and support staff.

Conclusions/implications: Condition-specific pamphlets appear to hold promise in providing residents and families with relevant information that may activate early reflections and conversations about end-of-life care. However, structured implementation strategies, training, and discussions are required to improve staff comfort with distribution and explore roles in distribution and follow-up.
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http://dx.doi.org/10.1016/j.jamda.2018.11.009DOI Listing
March 2019

Ethical issues in nursing home palliative care: a cross-national survey.

BMJ Support Palliat Care 2020 Sep 18;10(3):e29. Epub 2018 Dec 18.

School of Nursing and Midwifery, Queen's University, Belfast, UK.

Objectives: With an increased dependency on nursing homes to provide care to the ageing population, it is likely that ethical issues will also increase. This study aimed to identify the type of ethical issues and level of associated distress experienced by nurses providing palliative care in nursing homes in the UK and Canada, and pilot the Ethical issues in Palliative Care for Nursing Homes (EPiCNH) instrument in Canada.

Methods: A cross-sectional survey design was used. One hundred and twenty-three nurses located in 21 nursing homes across the UK and Canada completed the EPiCNH instrument.

Results: Frequent ethical issues include upholding resident autonomy, managing family distress, lack of staff communication and lack of time in both countries. Higher levels of distress resulted from poor communication, insufficient training, lack of time and family disagreements. Nurses in Canada experienced a greater frequency of ethical issues (p=0.022); however, there was no statistical difference in reported distress levels (p=0.53). The survey was positively rated for ease of completion, relevance and comprehensiveness.

Conclusions: Nurses' reported comparable experiences of providing palliative care in UK and Canadian nursing homes. These findings have implications on the practice of care in nursing homes, including how care is organised as well as capacity of staff to care for residents at the end of life. Training staff to take account of patient and family values during decision-making may address many ethical issues, in line with global policy recommendations. The EPiCNH instrument has demonstrated international relevance and applicability.
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http://dx.doi.org/10.1136/bmjspcare-2018-001643DOI Listing
September 2020

Mixed-methods single-arm repeated measures study evaluating the feasibility of a web-based intervention to support family carers of persons with dementia in long-term care facilities.

Pilot Feasibility Stud 2018 31;4:165. Epub 2018 Oct 31.

9Faculty of Nursing Level 3, Edmonton Clinic Health Academy, University of Alberta, 11405 87 Avenue, Edmonton, AB T6G 1C9 Canada.

Background: Following institutionalization of a relative with Alzheimer disease and related dementias (ADRD), family carers continue to provide care. They must learn to negotiate with staff and navigate the system all of which can affect their mental health. A web-based intervention, My Tools 4 Care-In Care (MT4C-In Care) was developed by the research team to aid carers through the transitions experienced when their relative/friend with ADRD resides in a long-term care (LTC) facility. The purpose of this study was to evaluate MT4C-In Care for feasibility, acceptability, ease of use, and satisfaction, along with its potential to help decrease carer's feelings of grief and improve their hope, general self-efficacy, and health-related quality of life.

Methods: The study was a mixed-methods single-arm repeated measures feasibility study. Participants accessed MT4C-In Care over a 2-month period. Data were collected at baseline and 1 and 2 months. Using a checklist, participants evaluated MT4C-In Care for ease of use, feasibility, acceptability, and satisfaction. Measures were also used to assess the effectiveness of the MT4C-In Care in improving hope (Herth Hope Index), general self-efficacy (GSES), loss and grief (NDRGEI), and health-related quality of life (SF12v2) of participants. Qualitative data were collected at 2 months and informed quantitative findings.

Results: The majority of the 37 participants were female (65%; 24/37), married (73%; 27/37), and had a mean age of 63.24 years (SD = 11.68). Participants reported that MT4C-In Care was easy to use, feasible, and acceptable. Repeated measures ANOVA identified a statistically significant increase over time in participants hope scores ( = 0.03) and a significant decrease in grief (< 0.001). Although significant differences in mental health were not detected, hope ( = 0.43,  = 0.03) and grief ( = - 0.66,  < 0.001) were significantly related to mental health quality of life.

Conclusion: MT4C-In Care is feasible, acceptable, and easy to use and shows promise to help carers of family members with ADRD residing in LTC increase their hope and decrease their grief. This study provides the foundation for a future pragmatic trial to determine the efficacy of MT4C-In Care.

Trial Registration: ClinicalTrials.gov NCT03571165. June 30, 2018 (retrospectively registered).
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http://dx.doi.org/10.1186/s40814-018-0356-7DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6208108PMC
October 2018

Advance Care Planning With Patients Who Have End-Stage Kidney Disease: A Systematic Realist Review.

J Pain Symptom Manage 2018 11 17;56(5):795-807.e18. Epub 2018 Jul 17.

School of Nursing and Midwifery, Queen's University Belfast, Medical Biology Centre, Belfast, United Kingdom.

Context: Patients with end-stage kidney disease have a high mortality rate and disease burden. Despite this, many do not speak with health care professionals about end-of-life issues. Advance care planning is recommended in this context but is complex and challenging. We carried out a realist review to identify factors affecting its implementation.

Objectives: The objectives of this study are 1) to identify implementation theories; 2) to identify factors that help or hinder implementation; and 3) to develop theory on how the intervention may work.

Methods: We carried out a systematic realist review, searching seven electronic databases: Medline, Embase, CINAHL, PsycINFO, Cochrane Library, Google Scholar, and ScienceDirect.

Results: Sixty-two papers were included in the review.

Conclusion: We identified two intervention stages-1) training for health care professionals that addresses concerns, optimizes skills, and clarifies processes and 2) use of documentation and processes that are simple, individually tailored, culturally appropriate, and involve surrogates. These processes work as patients develop trust in professionals, participate in discussions, and clarify values and beliefs about their condition. This leads to greater congruence between patients and surrogates; increased quality of communication between patients and professionals; and increased completion of advance directives. Advance care planning is hindered by lack of training; administrative complexities; pressures of routine care; patients overestimating life expectancy; and when patients, family, and/or clinical staff are reluctant to initiate discussions. It is more likely to succeed where organizations treat it as core business; when the process is culturally appropriate and takes account of patient perceptions; and when patients are willing to consider death and dying with suitably trained staff.
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http://dx.doi.org/10.1016/j.jpainsymman.2018.07.008DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6203056PMC
November 2018

"A tool doesn't add anything". The importance of added value: Use of observational pain tools with patients with advanced dementia approaching the end of life-a qualitative study of physician and nurse experiences and perspectives.

Int J Geriatr Psychiatry 2018 10 1;33(10):1346-1354. Epub 2018 Jul 1.

Northern Ireland Hospice, Belfast, UK.

Background: Observational pain tools (OPTs) are widely recommended in health care policies, clinical guidelines, and recommendations for pain assessment and management. However, it is unclear whether and how these tools are used for patients with advanced dementia approaching the end of life.

Aim: To explore hospice, secondary, and primary care physicians' and nurses' use of OPTs with patients dying with advanced dementia and their perspectives on practice development and training needs.

Methods: Twenty-three physicians and 24 nurses with experience of caring for people dying with advanced dementia were recruited from primary care surgeries (n = 5), hospitals (n = 6), hospices (n = 4), and nursing homes (n = 10). Semistructured, face-to-face interviews were conducted. Interviews were digitally recorded, transcribed verbatim, and thematic analysis applied to identify core themes.

Results: Three key themes emerged: (1) use of OPTs in this vulnerable patient population, (2) barriers to the use of OPTs and lack of perceived "added value", and (3) perspectives on practice development and training in pain assessment in advanced dementia at end of life. Just over one-quarter of participants (n = 13) routinely used OPTs. Reasons for nonuse included perceived limitations of such tools, difficulties with their use and integration with existing practice, and lack of perceived added value. Most participants strongly emphasised a need for ongoing training and development which facilitated transfer of knowledge and multidisciplinary skills across professions and specialties.

Conclusions: Health professionals require ongoing support in developing and integrating change to existing pain assessment protocols and approaches. These findings have important implications for health education, practice, and policy.
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http://dx.doi.org/10.1002/gps.4931DOI Listing
October 2018

Ethical issues experienced during palliative care provision in nursing homes.

Nurs Ethics 2019 Sep 26;26(6):1848-1860. Epub 2018 Jun 26.

Queen's University Belfast, UK.

Background: Palliative care is acknowledged as an appropriate approach to support older people in nursing homes. Ethical issues arise from many aspects of palliative care provision in nursing homes; however, they have not been investigated in this context.

Aim: To explore the ethical issues associated with palliative care in nursing homes in the United Kingdom.

Design: Exploratory, sequential, mixed-methods design.

Methods: Semi-structured interviews with 13 registered nurses and 10 healthcare assistants (HCAs) working in 13 nursing homes in the United Kingdom were used to explore ethical issues in palliative care. The 'Ethical Issues in Palliative Care for Nursing Homes' instrument was used to measure the frequency and level of distress arising from ethical issues through a cross-sectional survey with 69 registered nurses and 129 healthcare assistants. Data collection occurred between December 2014 and November 2015.

Ethical Considerations: Ethical approval was granted by Queen's University's School of Nursing and Midwifery Research Ethics Committee and governance sought from each nursing home's manager.

Findings: The interviews revealed three themes: ethical issues in practice; relational issues; and organisational issues. No significant differences between registered nurses and healthcare assistants were evident, confirming the patterns emerging from the interviews. Relational issues, primarily issues with residents and families, occurred most frequently and caused greater distress.

Conclusion: The shared environment is key in the experience of ethical issues; therefore, multidisciplinary education is needed for ethical decision making in palliative care. Addressing staff knowledge and service organisation may reduce ethical issues locally and provide a benchmark for global change.
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http://dx.doi.org/10.1177/0969733018779218DOI Listing
September 2019

Healthcare use, costs and quality of life in patients with end-stage kidney disease receiving conservative management: results from a multi-centre observational study (PACKS).

Palliat Med 2018 09 16;32(8):1401-1409. Epub 2018 May 16.

3 Queen's University Belfast, Belfast, UK.

Background: Previous research has explored the cost of providing renal replacement therapies in patients with end-stage kidney disease and their quality of life. This is the first study to examine the healthcare costs of patients receiving conservative care without dialysis for end-stage kidney disease. This alternative to dialysis is an option for patients who prefer a supportive and palliative care approach.

Aim: Descriptive cost and quality of life analyses alongside a UK-based multi-centre observational study in patients receiving conservative management for end-stage kidney disease.

Design: Health service use was recorded up to 12 months after making the decision to receive conservative management. Mean costs were calculated for each 3-month time period. The annual cost was calculated in two ways: by using only patients with complete cost data and by using all available data weighted by the number of patients at each time point.

Setting: In total, 42 patients who opted for conservative management over dialysis were recruited.

Results: Mean costs were £1622 (0-3 months), £1008 (3-6 months), £554 (6-9 months) and £2626 (9-12 months). Mean annual cost based on complete data ( n = 8) was £5511, and the weighted mean annual cost was £5620.

Conclusion: The importance of this study is twofold. First, it provides substantive new information for health and social care planning of conservative management by demonstrating where demand exists for services, in both the United Kingdom and other countries with a comparable health service structure. Second, methodologically, it indicates that it is feasible to collect service use data directly from this patient population.
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http://dx.doi.org/10.1177/0269216318775247DOI Listing
September 2018

Developing palliative care programs in Indigenous communities using participatory action research: a Canadian application of the public health approach to palliative care.

Ann Palliat Med 2018 Apr;7(Suppl 2):S52-S72

Peguis Home and Community Care, Peguis First Nation, Manitoba, Canada.

Background: The Indigenous people of Canada include First Nations, Inuit and Metis. This research focused on four diverse First Nations communities located in Ontario and Manitoba. First Nations communities have well-established culturally-based social processes for supporting their community members experiencing dying, loss, grief and bereavement. However, communities do not have formalized local palliative care (PC) programs and have limited access to medical services, especially pain and symptom management.

Methods: Researchers conducted participatory action research (PAR) in partnership with four First Nations communities to create local PC programs. A conceptual framework for community capacity development (Kelley model) and an integrative framework for PC research with First Nations communities guided the research over 6 years. Based on a community assessment, Elders and Knowledge Carriers, community leaders and First Nations health care providers created PC programs grounded in the unique social, spiritual and cultural practices of each community, and integrated them into local health services. Maintaining local control, community members engaged external health care organizations to address gaps in health services. Strategies such as journey mapping clarified roles and strengthened partnerships between community and external health care providers. Finally, community members advocated for needed funding, medication and equipment to provide palliative home care. The research team provided mentorship, facilitation, support, education and resources to the community leaders and documented and evaluated their capacity development process.

Results: Our findings contribute to PC practice, policy and research. Four unique PC programs were created that offered First Nations people the choice to receive PC at home, supported by family, community and culture. A workbook of culturally relevant resources was developed for use by interested First Nations communities across Canada, including resources for program development, direct care, education, and engaging external partners. Policy recommendations and a policy framework to guide PC program development in First Nations communities were created. All research outcomes were published on a website and disseminated nationally and internationally. Our work also contributes to furthering discussions of research methods that can advance public health and PC initiatives. We demonstrated the achievements of PAR methods in strengthening community action, developing the personal skills of community health care providers and creating more supportive environments for First Nations people who wish to die at home. The Kelley model was adapted for use by First Nations communities. We also identified keys to success for capacity development.

Conclusions: This research provides a Canadian example of implementing a public health approach to PC in an Indigenous context using PAR. It provides evidence of the effectiveness of a community capacity development as a strategy and illustrates how to implement it. This approach, fully grounded in local culture and context, has potential to be adapted to Indigenous communities elsewhere in Canada and internationally.
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http://dx.doi.org/10.21037/apm.2018.03.06DOI Listing
April 2018

Evaluation of the impact of telementoring using ECHO© technology on healthcare professionals' knowledge and self-efficacy in assessing and managing pain for people with advanced dementia nearing the end of life.

BMC Health Serv Res 2018 04 2;18(1):228. Epub 2018 Apr 2.

School of Pharmacy, Queen's University Belfast, 97 Lisburn Road, Belfast, BT9 7BL, UK.

Background: Pain assessment and management in advanced and end-stage dementia are challenging; patients are at risk of under-diagnosis, under-assessment and under-treatment. Previous research has highlighted the importance of needs-driven training and development in this area for physicians, nurses and healthcare assistants (HCAs) across specialties, disciplines and care settings. This study used teleconferencing technology to connect healthcare professionals across multiple settings and disciplines in real-time clinics, based on the Project ECHO© model. This paper reports the evaluation of the clinics by physicians, nurses and HCAs, including their knowledge and self-efficacy in pain assessment and management for patients with advanced and end-stage dementia.

Methods: A mixed method evaluation comprising quantitative survey of self-reported knowledge and self-efficacy pre- and post-ECHO clinic participation, and qualitative exploration of experiences of the clinics using focus group interviews. A census approach to sampling was undertaken. Pre- and post-ECHO evaluations were administered electronically using Survey Monkey software. Mann-Whitney U tests were used to explore differences in knowledge and self-efficacy scores pre- and post-ECHO clinic participation. Statistical significance was set a-priori at p = 0.05. Focus groups were video- and audio-recorded, transcribed verbatim and analysed using Braun & Clarke's model of thematic analysis.

Results: Eighteen healthcare professionals [HCPs] (physicians [n = 7], nurses [n = 10], HCA [n = 1]) and twenty HCPs (physicians [n = 10], nurses [n = 10]) completed pre- and post-ECHO evaluations respectively, reporting improvements in knowledge and self-efficacy on participation in ECHO clinics and perceived utility of the clinics. Seven HCPs (physicians [n = 2], nurses [n = 5]) participated in two focus groups. Four themes emerged: knowledge and skills development and dissemination; protected time; areas for improvement; and the future of ECHO.

Conclusions: Telementoring clinics for HCP education and training in pain assessment and management in advanced and end-stage dementia demonstrate a positive impact on knowledge and self-efficacy of HCPs and highlight the value of a cross-specialty network of practice which spans across disciplines/HCP types, care settings and geographical areas. Further development of ECHO services in this and in other clinical areas, shows significant potential to support delivery of high-quality care to complex patient populations.
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http://dx.doi.org/10.1186/s12913-018-3032-yDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5879835PMC
April 2018

The experiences and preparedness of family carers for best interest decision-making of a relative living with advanced dementia: A qualitative study.

J Adv Nurs 2018 Jul 20;74(7):1595-1604. Epub 2018 Apr 20.

School of Nursing and Midwifery, Queen's University Belfast, Belfast, UK.

Aim: To explore the experience and the preparedness of family carers in their caregiving role as best interest decision-makers of a relative living with advanced dementia.

Background: The prevalence of dementia is a global issue. The role of being a carer of a relative living with dementia does not necessarily lessen once they are admitted to a nursing home. Best interest decision-making including end-of-life care decisions need to be made and reaching these choices can be challenging. The preparedness of family carers in this role needs greater understanding.

Design: Descriptive qualitative study.

Methods: During 2015 twenty semi-structured interviews were conducted of family carers of nursing home residents living with advanced dementia, then analysed using Braun and Clarke's thematic analysis.

Results: Three themes were identified: (1) Caring for someone living with dementia. The impact on the carer's holistic well-being and their experience of being a best interest decision-maker; (2) Accessing support. The influential nature of formal and informal networks; (3) Perceived knowledge and understanding of the dementia trajectory of carers and nursing staff.

Conclusion: The experiences and preparedness of informal carers is a reflection of their personal response, but the distress experienced highlights the significant need of adequate support availability and of enhancing nursing staffs' dementia expertise to maximize their role in facilitating best interest decision-making. This has significant implications for nursing practice and for service user and nursing staff education. Considering the global impact of dementia, our findings have international relevance to similar nursing homes across the world.
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http://dx.doi.org/10.1111/jan.13576DOI Listing
July 2018

Family care conferences in long-term care: Exploring content and processes in end-of-life communication.

Palliat Support Care 2018 10 29;16(5):590-601. Epub 2017 Dec 29.

School of Nursing,McMaster University,Hamilton, Ontario,Canada.

ABSTRACTObjective:End-of-life (EoL) communication in long-term care (LTC) homes is often inadequate and delayed, leaving residents dying with unknown preferences or goals of care. Poor communication with staff contributes to families feeling unprepared, distressed, and dissatisfied with care. Family care conferences (FCCs) aim to increase structured systematic communication around goals and plans for the end of life. As part of the Strengthening a Palliative Approach to Care (SPA-LTC) project, FCCs were implemented in four LTC sites in Ontario, Canada. The purpose of this substudy was to examine FCC content and such guiding processes as documentation and multidisciplinary staff participation.

Method: A total of 24 FCCs were held for residents with a Palliative Performance Scale score of 40% (nearing death). Data were collected from conference forms (i.e., Family Questionnaires, Care Plan Conference Summaries), site-specific electronic chart documents, and fieldnotes. Directed content analysis of data was informed by the Canadian Hospice Palliative Care Association's Square of Care Model, which describes eight domains of care: disease management, physical, psychological, social, practical, spiritual, EoL, and loss/bereavement.

Results: The FCCs addressed an average of 71% of the content domains, with physical and EoL care addressed most frequently and loss/bereavement addressed the least. Two goals and five interventions were documented and planned on average per FCC. Examination of the processes supporting EoL communication found: (1) advantages to using FCC forms versus electronic charts; and (2) high levels of multidisciplinary participation overall but limited participation of personal support workers (PSWs) and physicians.

Significance Of Results: Communication around the end of life in LTC can be supported through the use of FCCs. Description of content and FCC processes provides guidance to persons implementing FCCs. Recommendations for tailoring conferences to optimize communication include use of specific conference forms, increased bereavement discussion, and further engagement of PSWs and physicians.
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http://dx.doi.org/10.1017/S1478951517000773DOI Listing
October 2018

A Call for Integrated and Coordinated Palliative Care.

Authors:
Kevin Brazil

J Palliat Med 2018 01;21(S1):S27-S29

1 School of Nursing and Midwifery, Queen's University Belfast , Belfast, United Kingdom .

Integrated palliative care is viewed as having the potential to improve service coordination, efficiency, and quality outcomes for patients and family carers. However, the majority of Canadians do not have access to regional, comprehensive, integrated palliative care. Work needs to be directed toward planning palliative care services that is integrated into the healthcare and social care system. To further this goal, it is important to have a conceptual understanding of the meaning of integrated care and its expression in organizational models for the provision of palliative care.
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http://dx.doi.org/10.1089/jpm.2017.0430DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5733653PMC
January 2018

Evaluation of a specialized oncology nursing supportive care intervention in newly diagnosed breast and colorectal cancer patients following surgery: a cluster randomized trial.

Support Care Cancer 2018 May 30;26(5):1533-1541. Epub 2017 Nov 30.

Faculty of Nursing, University of Toronto, Toronto, ON, Canada.

Background: Better coordination of supportive services during the early phases of cancer care has been proposed to improve the care experience of patients. We conducted a randomized trial to test a community-based nurse-led coordination of care intervention in cancer patients.

Methods: Surgical practices were cluster randomized to a control group involving usual care practices or a standardized nursing intervention consisting of an in-person supportive care assessment with ongoing support to meet identified needs, including linkage to community services. Newly diagnosed breast and colorectal cancer patients within 7 days of cancer surgery were eligible. The primary outcome was the patient-reported outcome (PRO) of continuity of care (CCCQ) measured at 3 weeks. Secondary outcomes included unmet supportive care needs (SCNS), quality of life (EORTC QLQ-C30), health resource utilization, and level of uncertainty with care trajectory (MUIS) at 3 and/or 8 weeks.

Results: A total of 121 breast and 72 colorectal patients were randomized through 28 surgical practices. There was a small improvement in the informational domain of continuity of care (difference 0.29 p = 0.05) and a trend to less emergency room use (15.8 vs 7.1%) (p = 0.07). There were no significant differences between groups on unmet need, quality of life, or uncertainty.

Conclusion: We did not find substantial gaps in the PROs measured immediately following surgery for breast and colorectal cancer patients. The results of this study support a more targeted approach based on need and inform future research focused on improving navigation during the initial phases of cancer treatment. ClinicalTrials.gov Identifier: NCT00182234. SONICS-Effectiveness of Specialist Oncology Nursing.
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http://dx.doi.org/10.1007/s00520-017-3981-4DOI Listing
May 2018

Ethical issues in palliative care for nursing homes: Development and testing of a survey instrument.

J Clin Nurs 2018 Feb 17;27(3-4):e678-e687. Epub 2017 Dec 17.

School of Nursing and Midwifery, Medical Biology Centre, Queen's University, Belfast, UK.

Aims And Objectives: To develop and psychometrically assess a survey instrument identifying ethical issues during palliative care provision in nursing homes.

Background: Registered nurses and healthcare assistants have reported ethical issues in everyday palliative care provision. Identifying these issues provides evidence to inform practice development to support healthcare workers.

Design: Cross-sectional survey of Registered nurses and healthcare assistants in nursing homes in one region of the UK.

Method: A survey instrument, "Ethical issues in Palliative Care for Nursing homes", was developed through the findings of qualitative interviews with Registered nurses and healthcare assistants in nursing homes and a literature review. It was reviewed by an expert panel and piloted prior to implementation in a survey in 2015 with a convenience sample of 596 Registered nurses and healthcare assistants. Descriptive and exploratory factor analyses were used to assess the underlying structure of the Frequency and Distress Scales within the instrument.

Results: Analysis of 201 responses (response rate = 33.7%) revealed four factors for the Frequency Scale and five factors for the Distress Scale that comprise the Ethical issues in Palliative Care for Nursing homes. Factors common to both scales included "Processes of care," "Resident autonomy" and "Burdensome treatment." Additionally, the Frequency Scale included "Competency," and the Distress Scale included "Quality of care" and "Communication."

Conclusion: The Ethical issues in Palliative Care for Nursing homes instrument has added to the palliative care knowledge base by considering the ethical issues experienced specifically by Registered nurses and healthcare assistants within the nursing home. This research offers preliminary evidence of the psychometric properties of the Ethical issues in Palliative Care for Nursing homes survey instrument.

Relevance To Practice: The two largest factors highlight the need to address the organisational aspects of caring and provide training in negotiating conflicting ethical principles.
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http://dx.doi.org/10.1111/jocn.14118DOI Listing
February 2018

Effectiveness of advance care planning with family carers in dementia nursing homes: A paired cluster randomized controlled trial.

Palliat Med 2018 03 8;32(3):603-612. Epub 2017 Aug 8.

6 School of Nursing, University of Ulster, Belfast, UK.

Background: In dementia care, a large number of treatment decisions are made by family carers on behalf of their family member who lacks decisional capacity; advance care planning can support such carers in the decision-making of care goals. However, given the relative importance of advance care planning in dementia care, the prevalence of advance care planning in dementia care is poor.

Aim: To evaluate the effectiveness of advance care planning with family carers in dementia care homes.

Design: Paired cluster randomized controlled trial. The intervention comprised a trained facilitator, family education, family meetings, documentation of advance care planning decisions and intervention orientation for general practitioners and nursing home staff.

Setting/participants: A total of 24 nursing homes with a dementia nursing category located in Northern Ireland, United Kingdom. Family carers of nursing home residents classified as having dementia and judged as not having decisional capacity to participate in advance care planning discussions.

Results: The primary outcome was family carer uncertainty in decision-making about the care of the resident (Decisional Conflict Scale). There was evidence of a reduction in total Decisional Conflict Scale score in the intervention group compared with the usual care group (-10.5, 95% confidence interval: -16.4 to -4.7; p < 0.001).

Conclusion: Advance care planning was effective in reducing family carer uncertainty in decision-making concerning the care of their family member and improving perceptions of quality of care in nursing homes. Given the global significance of dementia, the implications for clinicians and policy makers include them recognizing the importance of family carer education and improving communication between family carers and formal care providers.
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http://dx.doi.org/10.1177/0269216317722413DOI Listing
March 2018

'There's a Catch-22' - The complexities of pain management for people with advanced dementia nearing the end of life: A qualitative exploration of physicians' perspectives.

Palliat Med 2017 Sep 26;31(8):734-742. Epub 2016 Oct 26.

1 School of Pharmacy, Queen's University Belfast, Belfast, UK.

Background: Pain management is a cornerstone of palliative care. The clinical issues encountered by physicians when managing pain in patients dying with advanced dementia, and how these may impact on prescribing and treatment, are unknown.

Aim: To explore physicians' experiences of pain management for patients nearing the end of life, the impact of these on prescribing and treatment approaches, and the methods employed to overcome these challenges.

Design: Qualitative, semi-structured interview study exploring barriers to and facilitators of pain management, prescribing and treatment decisions, and training needs. Thematic analysis was used to elicit key themes.

Setting/participants: A total of 23 physicians, responsible for treating patients with advanced dementia approaching the end of life, were recruited from primary care ( n = 9), psychiatry ( n = 7) and hospice care ( n = 7).

Results: Six themes emerged: diagnosing pain, complex prescribing and treatment approaches, side effects and adverse events, route of administration, importance of sharing knowledge and training needs. Knowledge exchange was often practised through liaison with physicians from other specialities. Cross-speciality mentoring and the creation of knowledge networks were believed to improve pain management in this patient population.

Conclusion: Pain management in end-stage dementia is complex, requiring cross-population of knowledge between palliative care specialists and non-specialists, in addition to collateral information provided by other health professionals and patients' families. Regular, cost- and time-effective mentoring and ongoing professional development are perceived to be essential in empowering physicians to meet clinical challenges in this area.
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http://dx.doi.org/10.1177/0269216316673549DOI Listing
September 2017

The role of hospice in the transition from hospital to home for technology-dependent children-A qualitative study.

J Clin Nurs 2018 Jan 19;27(1-2):396-406. Epub 2017 Sep 19.

School of Nursing and Midwifery, Queen's University Belfast, Belfast, UK.

Aims And Objectives: To report parent and professional perspectives of step-down care in assisting the transition from hospital to home, within one children's hospice in a constituent country of the United Kingdom.

Background: In recent years, increasing numbers of children-dependent on long term assisted ventilation have been noted. Meeting the complex physical, emotional and social needs of the child and family is challenging. Many of these children spend extended periods in hospital even when medically stable.

Design: This was a qualitative study using an inductive, semantic analytic approach within a realist epistemology.

Methods: Data collection was carried out in 2013. Interviews took place with parents (n = 5) and focus groups with professionals (n = 26) who had experience of step-down care.

Results: Multiple benefits of step-down in the hospice were clear. Both sets of accounts suggested that for children and families life was "on hold" in hospital. Hospice was considered a home-like environment where the child and family could "live again". Parents reflected that, in hospice they were "living, not existing" while professionals highlighted hospice as nurturing and empowering the whole family, promoting the child's development while safely meeting their clinical needs.

Conclusions And Relevance To Clinical Practice: The study highlights a number of crucial benefits to the child and family both in the immediate and longer terms. The collective perspectives therefore endorse hospice as a potential viable choice for these children and their families during the always difficult, usually protracted transition from hospital to home.
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http://dx.doi.org/10.1111/jocn.13941DOI Listing
January 2018

Clinician views of patient decisional conflict when deciding between dialysis and conservative management: Qualitative findings from the PAlliative Care in chronic Kidney diSease (PACKS) study.

Palliat Med 2017 Dec 18;31(10):921-931. Epub 2017 Apr 18.

10 William Harvey Research Institute, Queen Mary University of London, London, UK.

Background: Only a paucity of studies have addressed clinician perspectives on patient decisional conflict, in making complex decisions between dialysis and conservative management (renal supportive and palliative care).

Aim: To explore clinician views on decisional conflict in patients with end-stage kidney disease.

Design: Interpretive, qualitative study.

Setting And Participants: As part of the wider National Institute for Health Research, PAlliative Care in chronic Kidney diSease study, semi-structured interviews were conducted with clinicians (nephrologists n = 12; 7 female and clinical nurse specialists n = 15; 15 female) across 10 renal centres in the United Kingdom. Interviews took place between April 2015 and October 2016 and a thematic analysis of the interview data was undertaken.

Results: Three major themes with associated subthemes were identified. The first, 'Frequent changing of mind regarding treatment options', revealed how patients frequently altered their treatment decisions, some refusing to make a decision until deterioration occurred. The second theme, 'Obligatory beneficence', included clinicians helping patients to make informed decisions where outcomes were uncertain. In weighing up risks and benefits, and the impact on patients, clinicians sometimes withheld information they thought might cause concern. Finally, 'Intricacy of the decision' uncovered clinicians' views on the momentous and brave decision to be made. They also acknowledged the risks associated with this complex decision in giving prognostic information which might be inaccurate.

Limitations: Relies on interpretative description which uncovers constructed truths and does not include interviews with patients.

Conclusion: Findings identify decisional conflict in patient decision-making and a tension between the prerequisite for shared decision-making and current clinical practice. Clinicians also face conflict when discussing treatment options due to uncertainty in equipoise between treatments and how much information should be shared. The findings are likely to resonate across countries outside the United Kingdom.
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http://dx.doi.org/10.1177/0269216317704625DOI Listing
December 2017

Primary care physicians' perspectives on facilitating older patients' access to community support services: Qualitative case study.

Can Fam Physician 2017 Jan;63(1):e31-e42

Master's in Science of Nursing student at McMaster University, a research assistant at the Aging, Community and Health Research Unit at McMaster University, and a registered nurse.

Objective: To understand how family physicians facilitate older patients' access to community support services (CSSs) and to identify similarities and differences across primary health care (PHC) models.

Design: Qualitative, multiple-case study design using semistructured interviews.

Setting: Four models of PHC delivery, specifically 2 family health teams (FHTs), 4 non-FHTs family health organizations, 4 fee-for-service practices, and 2 community health centres in urban Ontario.

Participants: Purposeful sampling of 23 family physicians in solo and small and large group practices within the 4 models of PHC.

Methods: A multiple-case study approach was used. Semistructured interviews were conducted and data were analyzed using within- and cross-case analysis. Case study tactics to ensure study rigour included memos and an audit trail, investigator triangulation, and the use of multiple, rather than single, case studies.

Main Findings: Three main themes were identified: consulting and communicating with the health care team to create linkages; linking patients and families to CSSs; and relying on out-of-date resources and ineffective search strategies for information on CSSs. All participants worked with their team members; however, those in FHTs and community health centres generally had a broader range of health care providers available to assist them. Physicians relied on home-care case managers to help make linkages to CSSs. Physicians recommended the development of an easily searchable, online database containing available CSSs.

Conclusion: This study shows the importance of interprofessional teamwork in primary care settings to facilitate linkages of older patients to CSSs. The study also provides insight into the strategies physicians use to link older persons to CSSs and their recommendations for change. This understanding can be used to develop resources and approaches to better support physicians in making appropriate linkages to CSSs.
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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5257237PMC
January 2017
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