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1. Support needs of patients with COPD: a systematic literature search and narrative review

Author

Gardener AC, Ewing G, Kuhn I, and Farquhar M

Subjects
Diseases of the respiratory system, RC705-779
Abstract

A Carole Gardener,1 Gail Ewing,2 Isla Kuhn,3 Morag Farquhar4 1Primary Care Unit, Department of Public Health and Primary Care, University of Cambridge, Cambridge, UK; 2Centre for Family Research, University of Cambridge, Cambridge, UK; 3University of Cambridge Medical School Library, University of Cambridge, Cambridge, UK; 4School of Health Sciences, University of East Anglia, Norwich, UK Introduction: Understanding the breadth of patients’ support needs is important for the delivery of person-centered care, particularly in progressive long-term conditions such as chronic obstructive pulmonary disease (COPD). Existing reviews identify important aspects of managing life with COPD with which patients may need support (support needs); however, none of these comprehensively outlines the full range of support needs that patients can experience. We therefore sought to systematically determine the full range of support needs for patients with COPD to inform development of an evidence-based tool to enable person-centered care.Methods: We conducted a systematic search and narrative review of the literature. Medline (Ovid), EMBASE, PsycINFO, Cochrane Library, and CINAHL were systematically searched for papers which included data addressing key aspects of support need, as identified by patients with COPD. Relevant data were extracted, and a narrative analysis was conducted.Results: Thirty-one papers were included in the review, and the following 13 domains (broad areas) of support need were identified: 1) understanding COPD, 2) managing symptoms and medication, 3) healthy lifestyle, 4) managing feelings and worries, 5) living positively with COPD, 6) thinking about the future, 7) anxiety and depression, 8) practical support, 9) finance work and housing, 10) families and close relationships, 11) social and recreational life, 12) independence, and 13) navigating services. These 13 domains of support need were mapped to three of the four overarching categories of need commonly used in relevant national strategy documents (ie, physical, psychological, and social); however, support needs related to the fourth category (spiritual) were notably absent.Conclusion: This review systematically identifies the comprehensive set of domains of support need for patients with COPD. The findings provide the evidence base for a tool to help patients identify and express their support needs, which underpins a proposed intervention to enable the delivery of person-centered care: the Support Needs Approach for Patients (SNAP). Keywords: COPD, person-centered care, support needs

Published
2018

2. Do patients and carers agree on symptom burden in advanced COPD?

Author

Mi E, Ewing G, White P, Mahadeva R, Gardener AC, and Farquhar M

Subjects
COPD, informal carers, symptom, agreement, Diseases of the respiratory system, RC705-779
Abstract

Emma Mi,1 Ella Mi,1 Gail Ewing,2 Patrick White,3 Ravi Mahadeva,4 A Carole Gardener,5 Morag Farquhar6 On behalf of the Living with Breathlessness Study Team 1School of Clinical Medicine, 2Centre for Family Research, University of Cambridge, Cambridge, 3Primary Care and Public Health Sciences, King’s College London, London, 4Department of Respiratory Medicine, Cambridge NIHR BRC, Addenbrookes Hospital, 5Department of Public Health and Primary Care, University of Cambridge, Cambridge, 6School of Health Sciences, University of East Anglia, Norwich, UK Objective: Accurate informal carer assessment of patient symptoms is likely to be valuable for decision making in managing the high symptom burden of COPD in the home setting. Few studies have investigated agreement between patients and carers in COPD. We aimed to assess agreement between patients and carers on symptoms, and factors associated with disagreement in a population-based sample of patients with advanced COPD. Patients and methods: This was a prospective, cross-sectional analysis of data from 119 advanced COPD patients and their carers. Patients and carers separately rated symptoms on a 4-point scale. Wilcoxon signed-rank tests and weighted Cohen’s kappa determined differences in patient and carer scores and patient–carer agreement, respectively. We identified characteristics associated with incongruence using Spearman’s rank correlation and Mann–Whitney U tests. Results: There were no significant differences between group-level patient and carer scores for any symptom. Patient–carer individual-level agreement was moderate for constipation (k=0.423), just below moderate for diarrhea (k=0.393) and fair for depression (k=0.341), fatigue (k=0.294), anxiety (k=0.289) and breathlessness (k=0.210). Estimation of greater patient symptom burden by carers relative to patients themselves was associated with non-spousal patient–carer relationship, non-cohabitating patients and carers, carer symptoms of anxiety and depression and more carer unmet support needs. Greater symptom burden estimation by the patient relative to the carer was associated with younger patients and longer duration of COPD. Conclusion: Overall, agreement between patients and carers was fair to moderate and was poorer for more subjective symptoms. There is a need to encourage open dialogue between patients and carers to promote shared understanding, help patients express themselves and encourage carers to draw attention to symptoms that patients do not report. The findings suggest a need to screen for and address both the psychological morbidities in patients with advanced COPD and their carers and unmet support needs in carers. Keywords: COPD, informal carers, symptom, agreement

Published
2018

3. Associations between the psychological health of patients and carers in advanced COPD

Author

Mi E, Ewing G, Mahadeva R, Gardener AC, Holt Butcher H, Booth S, and Farquhar M

Subjects
COPD, anxiety, depression, informal carers, patient-carer dyad, Diseases of the respiratory system, RC705-779
Abstract

Ella Mi,1 Emma Mi,1 Gail Ewing,2 Ravi Mahadeva,3 A Carole Gardener,4 Hanne Holt Butcher,4 Sara Booth,5 Morag Farquhar6 On behalf of the Living with Breathlessness Study Team 1School of Clinical Medicine, 2Centre for Family Research, University of Cambridge, 3Department of Respiratory Medicine, Cambridge University Hospitals NHS Foundation Trust, 4Department of Public Health and Primary Care, Institute of Public Health, 5Department of Oncology, University of Cambridge, Cambridge, 6School of Health Sciences, University of East Anglia, Norwich, UK Objective: Anxiety and depression are highly prevalent in patients with COPD and their informal carers, and associated with numerous risk factors. However, few studies have investigated these in primary care or the link between patient and carer anxiety and depression. We aimed to determine this association and factors associated with anxiety and depression in patients, carers, and both (dyads), in a population-based sample.Materials and methods: This was a prospective, cross-sectional study of 119 advanced COPD patients and their carers. Patient and carer scores ≥8 on the Hospital Anxiety and Depression Scale defined symptoms of anxiety and depression, χ2 tests determined associations between patient and carer symptoms of anxiety/depression, and χ2 and independent t-tests for normally distributed variables (otherwise Mann–Whitney U tests) were used to identify other variables significantly associated with these symptoms in the patient or carer. Patient–carer dyads were categorized into four groups relating to the presence of anxious/depressive symptoms in: both patient and carer, patient only, carer only, and neither. Factors associated with dyad symptoms of anxiety/depression were determined with χ2 tests and one-way analysis of variance for normally distributed variables (otherwise Kruskal–Wallis tests).Results: Prevalence of symptoms of anxiety and depression was 46.4% (n=52) and 42.9% (n=48) in patients, and 46% (n=52) and 23% (n=26) in carers, respectively. Patient and carer symptoms of anxiety/depression were significantly associated. Anxious and depressive symptoms in the patient were also significantly associated with more physical comorbidities, more exacerbations, greater dyspnea, greater fatigue, poor mastery, and depressive symptoms with younger age. Symptoms of carer anxiety were significantly associated with being female and separated/divorced/widowed, and depressive symptoms with younger age, higher educational level, and more physical comorbidities, and symptoms of carer anxiety and depression with more unmet support needs, greater subjective caring burden, and poor patient mastery. Dyad symptoms of anxiety/depression were significantly associated with greater patient fatigue.Conclusion: Symptoms of anxiety and depression in COPD patients and carers are significantly associated. Given their high prevalence, considerable impact on mortality, impact on quality of life and health care use, and associations with each other, screening for and addressing patient and carer anxiety and depression in advanced COPD is recommended. Keywords: COPD, anxiety, depression, informal carers, patient–carer dyad

Published
2017

4. Electronics for Fast Timing

Author

Braga, D., Carini, G., Deptuch, G., Dragone, A., Fahim, F., Flood, K., Giacomini, G., Gorni, D., Lipton, R., Markovic, B., Mazza, S., Miryala, S., Rubinov, P., Saffier-Ewing, G., Sadrozinski, H., Schwartzman, A., Seiden, A., Sun, Q., and Zimmerman, T.

Subjects
Physics - Instrumentation and Detectors, High Energy Physics - Experiment
Abstract

Picosecond-level timing will be an important component of the next generation of particle physics detectors. The ability to add a 4$^{th}$ dimension to our measurements will help address the increasing complexity of events at hadron colliders and provide new tools for precise tracking and calorimetry for all experiments. Detectors are described in detail on other whitepapers. In this note, we address challenges in electronics design for the new generations of fast timing detectors, Comment: Submitted to the Proceedings of the US Community Study on the Future of Particle Physics (Snowmass 2021)

Published
2022

5. A first look at AS-ROC: a Si-Ge integrated chip readout for fast timing

Author

DeWitt, J., primary, Galloway, Z., additional, Saffier-Ewing, G., additional, Gignac, M., additional, Mazza, S.M., additional, McKinney-Martinez, F., additional, Mobtaker, N., additional, Nagel, N., additional, Nizam, M., additional, Ott, J., additional, Sadrozinski, H.F.-W., additional, Schumm, B., additional, Seiden, A., additional, and Wilder, M., additional

Published
2024
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7. Participatory research with a rural Aboriginal Community Controlled Health Organisation: lessons learned using the CONSIDER statement.

Author

Beks, Hannah, Amos, T, Bell, J, Ryan, Joleen, Hayward, Josh, Brown, Andrew, Mckenzie, Candice, Allen, B, Ewing, G, Hudson, K, Clark, R, Morphett, Barry, Allender, Steven, Creighton, Douglas, Johnstone, Michael, Versace, Vincent, Beks, Hannah, Amos, T, Bell, J, Ryan, Joleen, Hayward, Josh, Brown, Andrew, Mckenzie, Candice, Allen, B, Ewing, G, Hudson, K, Clark, R, Morphett, Barry, Allender, Steven, Creighton, Douglas, Johnstone, Michael, and Versace, Vincent

Abstract

CONTEXT: In Australia, Aboriginal Community Controlled Health Organisations (ACCHOs) are geographically proximal to where Aboriginal and Torres Strait Islander People reside and are valued for providing holistic and culturally safe primary health care. Partnering with ACCHOs in research is appropriate for redressing health inequities experienced by Aboriginal and Torres Strait Islander People, which includes a high burden of chronic disease. Historically, some approaches to Aboriginal and Torres Strait Islander health research have been unethical. Greater accountability in the research process, transparency in reporting, and use of culturally appropriate research methodologies are key recommendations to improving the ethical integrity of research. The need for strengthening the reporting of health research involving Aboriginal and Torres Strait Islander People and Indigenous peoples globally led to the development of the CONSolIDated critERia for strengthening the reporting of health research involving Indigenous peoples (CONSIDER statement), which is a synthesis of international ethical guidelines. This project report uses the CONSIDER statement to critically reflect on participatory research undertaken in partnership with an ACCHO in the rural context and to identify lessons of value for future research. ISSUE: By using the CONSIDER statement as a tool for critical reflection, it was identified that processes used to establish a research partnership with an ACCHO were key to setting the research agenda, including identifying ethical issues, the needs of local Aboriginal and Torres Strait Islander People, and expectations from the research. The participation of Aboriginal community members throughout the entire research process was not only methodologically important but was also ethically appropriate. Research activities in this project included opportunities for Aboriginal community members to directly share their perspectives and experiences and develop local so

Published
2022

10. The Effects of the Serious Illness Care Program (SICP) on Health Care Resource Utilization (HRU)

Author

Muscedere, John, Truelove, Amber Hastings, Stockley, Denise, Fowler, Jennifer, Barrie, Carol, Hafid, A., Guenter, D., Gallagher, E., Howard, M., You, J., Nidumolu, A., Lagrotteria, A., Motehayerarani, A., Virk, N., Sinnarajah, A., Human, T., Ying, I., Wong, H., Cummings, G., Pattullo, A., Wang, J., Lee, J., Moffat, D., Grinman, M., Montgomery, C. L., Rolfson, D. B., Stelfox, H. T., Zuege, D., Zygun, D. A., Hudson, D., Opgenorth, D., Bagshaw, S. M., Laur, C., Bell, J., Valaitis, R., Ray, S., Keller, H., Prevett, C., Fang, H., Shkredova, D., Xie, F., Zoratti, M., Gordon, C., Adachi, J., Phillips, S., Richardson, J., Tang, A., Ma, C., Riehm, L., Kendell, C., Urquhart, R., Burge, F., Kotecha, J., Martin, M., Jorgensen, M., Han, H., Dubé, D., Gutman, G., Sussman, T., DeVries, B., Gahagan, J., Brotman, S., Koo, E., Wegier, P., Embuldeniya, G., Ansari, S., Kobewka, D., O’Connor, E., Wu, P., Steinberg, L., Bell, C., Walton, T., Colstello, J., van Walraven, C., Downar, J., Wu, P. E., Costello, J., Wu, R., Frost, D., Kawaguchi, S., Mahtani, R., Toor, H., Goldman, R., Myers, J., Forster, A., Hladkowicz, E., Taljaard, M., Bryson, G., Beaulé, P. E., Gagné, S., Hamilton, G., Huang, A., Joanisse, J. A., Lavallée, L. T., MacDonald, D., Moloo, H., Thavorn, K., Yang, H., Forster, A. J., McIsaac, D. I., Sypes, E. E., de Grood, C., Parsons Leigh, J., Clement, F. M., Niven, D. J., Bitschy, A. M., Donald, E., Ewing, G., Grande, G., Sawatzky, R., Stajduhar, K. I., Parascandalo, F., Yu-Hin Siu, H., Delleman, B., Langevin, J., Mangin, D., Fang, Q., Price, D., Chan, D., Ting Wang, H., Nguyen, Q. D., Menard, C. A., Morinville, A., Hirdes, J. P., Hebert, P., Singh, J., Swinton, M., Morrison, J. M., Laur, C. V., Ebad, M., Dubin, J. A., Chen, H., Curtis, L.J., Bell, J. J., Gramlich, L. M., Keller, H. H., Dionne, J., Duan, E., Clarke, F., Hand, L., Millen, T., Sandu, G., Hodder, J., Santos, M., Shah, S., Trembley, M., Gomes, B., Leclair, L., Montroy, K., Watpool, I., Porteous, R., Acres, S., Foster, D., Auld, F., Williams, V., Marchand, J., Campisi, J., Alam, N., Lebrassier, M., Thompson, P., Hewer, T., Gilles, D., Hunt, M., Georgescu, I., Boyd, T., Lys, J., Marten, N., Campbell, E., Bentall, T., Kavikondala, K., Willems, S., Panchbhaya, Z., Booth, J., Ruddell, S., Richter, B., Tassy, D., Jesso, R., Marinoff, N., Perez, A., Kaur, N., Campbell, T., Lizotte, P., Lavoie, L., Dionne, M., Saunders, L., Zytaruk, N., Heels-Ansdell, D., Johnstone, J., Cook, D., Quinn, K. L., Campitelli, M. A., Diong, C., Daneman, N., Stall, N., Morris, A. M., Detsky, A. S., Jeffs, L., Maxwell, C. J., Bell, C. M., Bronskill, S. E., Alghamdi, M., Baracos, V., Karvellas, C., Churchill, T., Khadaroo, R. G., Moorhouse, P., Sampalli, T., Bedford, L., Edwards, L., Gibson, R., Mallery, L., Taylor, D., Warner, G., Harnish, A., Law, V., Lawson, B. J., Wood, S., Buckler, M., Fernandes, P., Elliott, J., Stolee, P., Ali, G., Dunichand-Hoedl, A., Salim, S. Y., Mazurak, V. C., Baracos, V. E., Heckman, G. A., Hebert, P. C., Costa, A. P., Arthur, S. A., Jones, A., Salam-White, L., Tanner, D., Negm, A. M., Kennedy, C. C., Ioannidis, G., Gajic-Veljanoski, O., Thabane, L., Adachi, J. D., Marr, S., Lau, A., Atkinson, S., Petruccelli, D., DeBeer, J., Winemaker, M., Avram, V., Williams, D., Armstrong, D., Lumb, B., Panju, A., Papaioannou, A., Boucher, A., Haesebaert, J., Freitas, A., Adekpedjou, R., Landry, M., Bourassa, H., Dawn, S., Croteau, J., Légaré, F., Takaoka, A. M., Clarke, F. J., Shears, M. S., Muscedere, J., Cook, D. J., Lee, A., Bouchard, D. R., Sénéchal, M., Mayo, A., Hrubeniuk, T. J., Keshavarz, M., Robertson, C., Read, E. A., Norris, C M., Meyer, S. R., Zibdawi, M., Marshall, H. D., Moody, E. M., Martin-Misener, R., Hawken, E. R., Boyd, J. G., Im, J., Mak, S., Upshur, R., Steinbreg, L., Kuluski, K., Van Damme, J., Delvin, M-E., Medves, J., Woddhouse, K., Sakamoto, M. L., Durepos, P., Ploeg, J., Akhtar-Danesh, N., Punia, H., Kaasalainen, S., Hewston, P., Kennedy, C., Merom, D., Patterson, C., Sztramko, R., Trainor, L., Grenier, A., Woolhouse, M., Petrella, A.F.M., Heath, M., Hyland, B., Fan, M., Hamilton, M., Reding, R., Trbovich, P., O’Reilly, D. M., O’Donnell, S., Bruning, P., Donovan, J., Anoveros-Barrera, A., Coletta, G., Jakubowski, J., Pritchard, J. M., Werner, G. E., Hoben, M., Estabrooks, C. A., Leaker, H. R., Holroyd-Leduc, J., Fox, L., Smallbone, J., Stinchcombe, A., Wilson, K., Kortes-Miller, K., Rees-Milton, K. J., Hulbert, M., Turner, M. E., Berger, C., Anastassiades, T. P., Hopman, W. M., Adams, M. A., Powley, W. L., Holden, R. M., Grewal, K., Sheets, D., Smith, A. P., Trites, M., Kennedy, M., MacDonald, S., Sivarajah, L., Lamarche, L., Giangregorio, A., Radcliffe, S., Ioannidi, G., Negm, A., Connolly, M. S., Klein, J. M., Huber, J. S., Safaraz, S., Foster, A. J., Simpson, J. A., Brunt, K.R., Elfassy, M. D., Munshi, L., Mehta, N., Martinez Guasch, F., Kamen, C., Burry, L., Soong, C., Mehta, S., McKay, S., Yetman, L., Slayter, J., McCollum, A., McGibbon, C. A., Jarrett, P., Robinson, B., Kolyvas, A., McCloskey, R., Gionet, S., Scheme, E., Harris, B., D’Aoust, T. R., Shao, T., Egan, R., Muscedere, J. G., Milne, B., Fitzpatrick, M., Yingwei Peng, P., Parlow, J., and Johnson, A. P.

Subjects
Abstracts
Published
2019

17. Mobile primary health care clinics for Indigenous populations in Australia, Canada, New Zealand and the United States: a systematic scoping review.

Author

Beks, H, Ewing, G, Charles, JA, Mitchell, F, Paradies, Y, Clark, RA, Versace, VL, Beks, H, Ewing, G, Charles, JA, Mitchell, F, Paradies, Y, Clark, RA, and Versace, VL

Abstract

BACKGROUND: Mobile clinics have been used to deliver primary health care to populations that otherwise experience difficulty in accessing services. Indigenous populations in Australia, Canada, New Zealand, and the United States experience greater health inequities than non-Indigenous populations. There is increasing support for Indigenous-governed and culturally accessible primary health care services which meet the needs of Indigenous populations. There is some support for primary health care mobile clinics implemented specifically for Indigenous populations to improve health service accessibility. The purpose of this review is to scope the literature for evidence of mobile primary health care clinics implemented specifically for Indigenous populations in Australia, Canada, New Zealand, and the United States. METHODS: This review was undertaken using the Joanna Brigg Institute (JBI) scoping review methodology. Review objectives, inclusion criteria and methods were specified in advance and documented in a published protocol. The search included five academic databases and an extensive search of the grey literature. RESULTS: The search resulted in 1350 unique citations, with 91 of these citations retrieved from the grey literature and targeted organisational websites. Title, abstract and full-text screening was conducted independently by two reviewers, with 123 citations undergoing full text review. Of these, 39 citations discussing 25 mobile clinics, met the inclusion criteria. An additional 14 citations were snowballed from a review of the reference lists of included citations. Of these 25 mobile clinics, the majority were implemented in Australia (n = 14), followed by United States (n = 6) and Canada (n = 5). No primary health mobile clinics specifically for Indigenous people in New Zealand were retrieved. There was a pattern of declining locations serviced by mobile clinics with an increasing population. Furthermore, only 13 mobile clinics had some form of evalua

Published
2020

21. Supporting family carers in home-based end-of-life care: using participatory action research to develop a training programme for support workers and volunteers

Author

Caswell, G, Hardy, B, Ewing, G, Kennedy, S, Seymour, J, Ewing, Gail [0000-0001-9547-7247], and Apollo - University of Cambridge Repository

Subjects
Volunteers, Health Knowledge, Attitudes, Practice, Terminal Care, participatory action research, Health Personnel, education, Palliative Care, Social Support, Pilot Projects, Home Care Services, training programme, Hospice Care, Caregivers, family carers, end of life care, Humans, Clinical Competence, Health Services Research, carer support, health care economics and organizations, Needs Assessment, Program Evaluation
Abstract

$\textbf{Background}$ Family carers are crucial in enabling dying people to stay at home, but are often not prepared for their caring role, receiving little support from formal health and social care services. It is increasingly likely that any help or support family carers receive will be provided by a third sector organisation on either a voluntary basis or by untrained carer support workers. $\textbf{Objectives}$ To produce a training programme designed to equip carer support workers and volunteers with the basic skills and knowledge needed to support family carers. $\textbf{Process of development}$ Participatory action research, a collaborative form of working in which those who are affected by an issue take a lead role in the research, was used. Bereaved carers acting as research partners, support workers and representatives of third sector organisations took an active part in designing, developing, piloting and refining the programme in a number of interlinked stages. During development, the programme was piloted on four occasions and evaluated by 36 trainees and 3 trainers. $\textbf{Final training programme}$ The outcome of the project is an innovative, 1-day training programme, offering an introduction to supporting family carers who are looking after someone approaching the end of life. The use of participatory action research methods enabled the development of a programme that addresses support needs identified by bereaved carers and training needs identified by carer support workers. The finished programme includes all the materials necessary to run a training day for support workers and volunteers: facilitator's notes, trainee workbook, slides, promotional poster and pre-course reading for trainees. Knowledge of issues involved in end-of-life and palliative care is not required, although some experience in delivering training is advisable. $\textbf{Conclusion}$ The programme evaluated well during development, but further research is required to examine the transfer of learning into the workplace.

Published
2019

23. Geographical analysis of evaluated chronic disease programs for Aboriginal and Torres Strait Islander people in the Australian primary health care setting: a systematic scoping review.

Author

Beks, H, Binder, MJ, Kourbelis, C, Ewing, G, Charles, J, Paradies, Y, Clark, RA, Versace, VL, Beks, H, Binder, MJ, Kourbelis, C, Ewing, G, Charles, J, Paradies, Y, Clark, RA, and Versace, VL

Abstract

BACKGROUND: Targeted chronic disease programs are vital to improving health outcomes for Indigenous people globally. In Australia it is not known where evaluated chronic disease programs for Aboriginal and Torres Strait Islander people have been implemented. This scoping review geographically examines where evaluated chronic disease programs for Aboriginal people have been implemented in the Australian primary health care setting. Secondary objectives include scoping programs for evidence of partnerships with Aboriginal organisations, and use of ethical protocols. By doing so, geographical gaps in the literature and variations in ethical approaches to conducting program evaluations are highlighted. METHODS: The objectives, inclusion criteria and methods for this scoping review were specified in advance and documented in a published protocol. This scoping review was undertaken in accordance with the Joanna Briggs Institute (JBI) scoping review methodology. The search included 11 academic databases, clinical trial registries, and the grey literature. RESULTS: The search resulted in 6894 citations, with 241 retrieved from the grey literature and targeted organisation websites. Title, abstract, and full-text screening was conducted by two independent reviewers, with 314 citations undergoing full review. Of these, 74 citations evaluating 50 programs met the inclusion criteria. Of the programs included in the geographical analysis (n = 40), 32.1% were implemented in Major Cities and 29.6% in Very Remote areas of Australia. A smaller proportion of programs were delivered in Inner Regional (12.3%), Outer Regional (18.5%) and Remote areas (7.4%) of Australia. Overall, 90% (n = 45) of the included programs collaborated with an Aboriginal organisation in the implementation and/or evaluation of the program. Variation in the use of ethical guidelines and protocols in the evaluation process was evident. CONCLUSIONS: A greater focus on the evaluation of chronic disease programs fo

Published
2019

31. Facilitating successful implementation of a person-centred intervention to support family carers within palliative care: a qualitative study of the Carer Support Needs Assessment Tool (CSNAT) intervention

Author

Diffin, J, Ewing, G, Harvey, G, Grande, G, Apollo - University of Cambridge Repository, and Diffin, J [0000-0003-3249-5100]

Subjects
ResearchInstitutes_Networks_Beacons/MICRA, Psychometrics, MRC Framework, Attitude of Health Personnel, lcsh:Special situations and conditions, Intervention, State Medicine, Interviews as Topic, Social Facilitation, Surveys and Questionnaires, MRC framework, Humans, Family carer, lcsh:RC952-1245, Palliative Care, Context, United Kingdom, Outcome and Process Assessment, Health Care, Manchester Institute for Collaborative Research on Ageing, Caregivers, Carer, Implementation, Palliative care, Facilitation, Person-centred, End of life care, Needs Assessment, Research Article
Abstract

Background An understanding of how to implement person-centred interventions in palliative and end of life care is lacking, particularly for supporting family carers. To address this gap, we investigated components related to successful implementation of the Carer Support Needs Assessment Tool (CSNAT) intervention, a person-centred process of carer assessment and support, using Promoting Action on Research Implementation in Health Services (PARIHS) as a theoretical framework. This study identifies how the PARIHS component of ‘facilitation’ and its interplay with the components of ‘context’ and ‘evidence’ affect implementation success. Methods MRC Framework Phase IV study to evaluate implementation of the CSNAT intervention at scale, over six months, in 36 UK palliative care services. 38 practitioners acting as internal facilitators in 35/36 services were interviewed. Field notes were collected during teleconference support sessions between the external and internal facilitators. Results Successful implementation was associated with internal facilitators’ ‘leverage’ including their positioning within services, authority to change practice, and having a team of supportive co-facilitators. Effective facilitation processes included a collaborative approach, ongoing communication, and proactive problem solving to address implementation barriers. Facilitators needed to communicate the evidence and provide legitimacy for changing practice. Contextual constraints on facilitation included having to adjust recording systems to support implementation, organisational changes, a patient-focused culture and lack of managerial support. Conclusions The CSNAT intervention requires attention to both facilitation processes and conducive organisational structures for successful implementation. These findings are likely to be applicable to any person-centred process of assessment and support within palliative care. Electronic supplementary material The online version of this article (10.1186/s12904-018-0382-5) contains supplementary material, which is available to authorized users.

Published
2018
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32. Support needs of patients with chronic obstructive pulmonary disease (COPD): a systematic literature search and narrative review

Author

Gardener, A Carole, Ewing, G, Kuhn, Isla, Farquhar, Morag, Gardener, Anita [0000-0002-8064-3780], Ewing, Gail [0000-0001-9547-7247], Kuhn, Isla [0000-0002-2879-4020], Farquhar, Morag [0000-0001-7991-7679], and Apollo - University of Cambridge Repository

Subjects
COPD, person-centred care, support needs
Abstract

Introduction Understanding the breadth of patients’ support needs is important for the delivery of person-centred care, particularly in progressive long-term conditions such as chronic obstructive pulmonary disease (COPD). Existing reviews identify important aspects of managing life with COPD with which patients may need support (support needs), however none of these comprehensively outlines the full range of support needs patients can experience. We therefore sought to systematically determine the full range of support needs for patients with COPD to inform development of an evidence-based tool to enable person-centred care. Material and Methods We conducted a systematic search and narrative review of the literature. Medline (Ovid), EMBASE, PsycINFO, Cochrane Library, and CINAHL were systematically searched for papers which included data addressing key aspects of support need, as identified by patients with COPD. Relevant data was extracted and a narrative analysis conducted. Results Thirty-one papers were included in the review and thirteen domains (broad areas) of support need identified: (1) understanding COPD, (2) managing symptoms and medication, (3) healthy lifestyle, (4) managing feelings and worries, (5) living positively with COPD, (6) thinking about the future, (7) anxiety and depression, (8) practical support, (9) finance work and housing, (10) families and close relationships, (11) social and recreational life, (12) independence, and (13) navigating services. These thirteen domains of support need were mapped to three of four overarching categories of need commonly used in relevant national strategy documents (ie physical, psychological, and social), however support needs related to the fourth category (spiritual) were notably absent. Conclusions This review systematically identifies the comprehensive set of domains of support need for patients with COPD. The findings provide the evidence-base for a tool to help patients identify and express their support needs, which underpins a proposed intervention to enable delivery of person-centred care: the Support Needs Approach for Patients (SNAP)., This paper presents independent research funded by the National Institute for Health Research School for Primary Care Research (NIHR SPCR). MF was funded by a National Institute for Health Research Career Development Fellowship (grant number: CDF-2012-05-218).

Published
2018
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33. Associations between the psychological health of patients and carers in advanced chronic obstructive pulmonary disease

Author

Mi, E, Ewing, G, Mahadeva, R, Gardener, C, Butcher, HH, Booth, S, Farquhar, M, Ewing, Gail [0000-0001-9547-7247], and Apollo - University of Cambridge Repository

Subjects
health care facilities, manpower, and services, behavior and behavior mechanisms, social sciences, human activities, health care economics and organizations
Abstract

Objective: Anxiety and depression are highly prevalent in patients with chronic obstructive pulmonary disease (COPD) and their informal carers, and associated with numerous risk factors. However, few studies have investigated these in primary care or the link between patient and carer anxiety and depression. We aimed to determine this association, and factors associated with anxiety and depression in patients, carers, and both(dyads), in a population-based sample. Methods: Prospective, cross-sectional study of 119 advanced COPD patients and their carers. Patient and carer scores ≥8 on the Hospital Anxiety and Depression Scale defined symptoms of anxiety and depression. Chi-square tests determined associations between patient and carer symptoms of anxiety/depression. Chi-square and independent-t tests for normally distributed variables (otherwise Mann-Whitney U tests) were used to identify other variables significantly associated with these symptoms in the patient or carer. Patient-carer dyads were categorised into four groups relating to the presence of anxious/depressive symptoms in: (1) both patient and carer, (2) patient only, (3) carer only and (4) neither. Factors associated with dyad symptoms of anxiety/depression were determined with Chi-square and one-way ANOVA tests for normally distributed variables (otherwise Kruskal-Wallis tests). Results: Prevalence of symptoms of anxiety and depression was 46.4% (n=52) and 42.9% (n=48) in patients, and 46.0% (n=52) and 23.0% (n=26) in carers, respectively. Patient and carer symptoms of anxiety/depression were significantly associated. Anxious and depressive symptoms in the patient were also significantly associated with more physical co-morbidities, more exacerbations, greater dyspnoea, greater fatigue, and poor mastery, and depressive symptoms with younger age. Symptoms of carer anxiety were significantly associated with being female and separated/divorced/widowed, and depressive symptoms with younger age, higher educational level, and more physical co-morbidities, and symptoms of carer anxiety and depression with more unmet support needs, greater subjective caring burden and poor patient mastery. Dyad symptoms of anxiety/depression were significantly associated with greater patient fatigue. Conclusion: Symptoms of anxiety and depression in COPD patients and carers are significantly associated. Given their high prevalence, considerable impact on mortality, quality-of-life and healthcare use, and associations with each other, screening for and addressing patient and carer anxiety and depression in advanced COPD is recommended.

Published
2018
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35. The Impact of Supporting Family Caregivers Before Bereavement on Outcomes After Bereavement: Adequacy of End-of-Life Support and Achievement of Preferred Place of Death

Author

Aoun, Samar, Ewing, G., Grande, G., Toye, Christine, Bear, N., Aoun, Samar, Ewing, G., Grande, G., Toye, Christine, and Bear, N.

Abstract

CONTEXT: The investigation of the situation of bereaved family caregivers following caregiving during the end-of-life phase of illness has not received enough attention. OBJECTIVES: This study investigated the extent to which using the Carer Support Needs Assessment Tool (CSNAT) intervention during the caregiving period has affected bereaved family caregivers' perceptions of adequacy of support, their grief and well-being, and achievement of their preferred place of death. METHOD: All family caregivers who participated in a stepped-wedge cluster trial of the CSNAT intervention in Western Australia (2012-2014) and completed the pre-bereavement study (n = 322) were invited to take part in a caregiver survey by telephone four to six months after bereavement (2015). The survey measured the adequacy of end-of-life support, the level of grief, the current physical and mental health, and the achievement of the preferred place of death. RESULTS: The response rate was 66% (152, intervention; 60, control). The intervention group perceived that their pre-bereavement support needs had been adequately met to a significantly greater extent than the control group (d = 0.43, P < 0.001) and that patients have achieved their preferred place of death more often according to their caregivers (79.6% vs. 63.6%, P = 0.034). There was also a greater agreement on the preferred place of death between patients and their caregivers in the intervention group (P = 0.02). CONCLUSIONS: The results from this study provide evidence that the CSNAT intervention has a positive impact on perceived adequacy of support of bereaved family caregivers and achievement of preferred place of death according to caregivers. The benefits gained by caregivers in being engaged in early and direct assessment of their support needs before bereavement reinforce the need for palliative care services to effectively support caregivers well before the patient's death.

Published
2018

37. DNA Surveillance:Web-based molecular identification of whales, dolphins, and porpoises

Author

Ross, H. A., Lento, G. M., Dalebout, M. L., Goode, M., Ewing, G., McLaren, P., Rodrigo, A. G., Lavery, S., and Baker, C. S.

Subjects
Methodology -- Analysis, Genetic research -- Analysis, Genetic research -- Methods, Population genetics -- Research, Porpoises -- Genetic aspects, Dolphins -- Genetic aspects, Delphinidae -- Genetic aspects, Whales -- Genetic aspects, Cetacea -- Genetic aspects, Nucleotide sequence -- Genetic aspects, Internet -- Services, DNA -- Genetic aspects, Heredity -- Research, Heredity -- Genetic aspects, Internet, Biological sciences
Abstract

The authors describe Web-based application called DNA Surveilance which is used in population and species identification of unknown specimens. The system is aligning user-submitted DNA sequences with the curated data set of reference sequence.

Published
2003

38. Strategies designed to help healthcare professionals to recruit participants to research studies (Review)

Author

Preston, Nancy Jean, Walshe, Catherine Elizabeth, Farquhar, Morag, Stevinson, C., Ewing, G., Calman, Lynn, Burden, Sorrel, Brown Wilson, Christine, Hopkinson, Jane, Todd, Chris, Preston, Nancy Jean, Walshe, Catherine Elizabeth, Farquhar, Morag, Stevinson, C., Ewing, G., Calman, Lynn, Burden, Sorrel, Brown Wilson, Christine, Hopkinson, Jane, and Todd, Chris

Abstract

Background Identifying and approaching eligible participants for recruitment to research studies usually relies on healthcare professionals. This process is sometimes hampered by deliberate or inadvertent gatekeeping that can introduce bias into patient selection. Objectives Our primary objective was to identify and assess the effect of strategies designed to help healthcare professionals to recruit participants to research studies. Search methods We performed searches on 5 January 2015 in the following electronic databases: Cochrane Methodology Register, CENTRAL, MEDLINE, EMBASE, CINAHL, British Nursing Index, PsycINFO, ASSIA and Web of Science (SSCI, SCI-EXPANDED) from 1985 onwards. We checked the reference lists of all included studies and relevant review articles and did citation tracking through Web of Science for all included studies. Selection criteria We selected all studies that evaluated a strategy to identify and recruit participants for research via healthcare professionals and provided pre-post comparison data on recruitment rates. Data collection and analysis Two review authors independently screened search results for potential eligibility, read full papers, applied the selection criteria and extracted data. We calculated risk ratios for each study to indicate the effect of each strategy. Main results Eleven studies met our eligibility criteria and all were at medium or high risk of bias. Only five studies gave the total number of participants (totalling 7372 participants). Three studies used a randomised design, with the others using pre-post comparisons. Several different strategies were investigated. Four studies examined the impact of additional visits or information for the study site, with no increases in recruitment demonstrated. Increased recruitment rates were reported in two studies that used a dedicated clinical recruiter, and five studies that introduced an automated alert system for identifying eligible participants. The studies were embe

Published
2016

43. Supporting family caregivers to identify their own needs in end-of-life care: Qualitative findings from a stepped wedge cluster trial

Author

Aoun, Samar, Deas, Kathy, Toye, Christine, Ewing, G., Grande, G., Stajduhar, K., Aoun, Samar, Deas, Kathy, Toye, Christine, Ewing, G., Grande, G., and Stajduhar, K.

Abstract

Introduction: The Carer Support Needs Assessment Tool encompasses the physical, psychological, social, practical, financial, and spiritual support needs that government policies in many countries emphasize should be assessed and addressed for family caregivers during end-of-life care. Aim: To describe the experience of family caregivers of terminally ill people of the Carer Support Needs Assessment Tool intervention in home-based palliative care. Methods: This study was conducted during 20122014 in Silver Chain Hospice Care Service in Western Australia. This article reports on one part of a three-part evaluation of a stepped wedge cluster trial. All 233 family caregivers receiving the Carer Support Needs Assessment Tool intervention provided feedback on their experiences via brief end-of-trial semi-structured telephone interviews. Data were subjected to a thematic analysis. Results: The overwhelming majority reported finding the Carer Support Needs Assessment Tool assessment process straightforward and easy. Four key themes were identified: (1) the practicality and usefulness of the systematic assessment; (2) emotional responses to caregiver reflection; (3) validation, reassurance, and empowerment; and (4) accessing support and how this was experienced. Conclusion: Family caregivers appreciated the value of the Carer Support Needs Assessment Tool intervention in engaging them in conversations about their needs, priorities, and solutions. The Carer Support Needs Assessment Tool presented a simple, yet potentially effective intervention to help palliative care providers systematically assess and address family caregivers needs. The Carer Support Needs Assessment Tool provided a formal structure to facilitate discussions with family caregivers to enable needs to be addressed. Such discussions can also inform an evidence base for the ongoing development of services for family caregivers, ensuring that new or improved services are designed to meet the explicit needs of f

Published
2015

44. The impact of the carer support needs assessment tool (CSNAT) in community palliative care using a stepped wedge cluster trial

Author

Aoun, Samar, Grande, G., Howting, Denise, Deas, Kathy, Toye, Christine, Troeung, L., Stajduhar, K., Ewing, G., Aoun, Samar, Grande, G., Howting, Denise, Deas, Kathy, Toye, Christine, Troeung, L., Stajduhar, K., and Ewing, G.

Abstract

Family caregiving towards the end-of-life entails considerable emotional, social, financial and physical costs for caregivers. Evidence suggests that good support can improve caregiver psychological outcomes. The primary aim of this study was to investigate the impact of using the carer support needs assessment tool (CSNAT), as an intervention to identify and address support needs in end of life home care, on family caregiver outcomes. A stepped wedge design was used to trial the CSNAT intervention in three bases of Silver Chain Hospice Care in Western Australia, 2012-14. The intervention consisted of at least two visits from nurses (2-3 weeks apart) to identify, review and address caregivers' needs. The outcome measures for the intervention and control groups were caregiver strain and distress as measured by the Family Appraisal of Caregiving Questionnaire (FACQ-PC), caregiver mental and physical health as measured by SF-12v2, and caregiver workload as measured by extent of caregiver assistance with activities of daily living, at baseline and follow up. Total recruitment was 620. There was 45% attrition for each group between baseline and follow-up mainly due to patient deaths resulting in 322 caregivers completing the study (233 in the intervention group and 89 in the control group). At follow-up, the intervention group showed significant reduction in caregiver strain relative to controls, p=0.018, d=0.348 (95% CI 0.25 to 0.41). Priority support needs identified by caregivers included knowing what to expect in the future, having time for yourself in the day and dealing with your feelings and worries. Despite the challenges at the clinician, organisational and trial levels, the CSNAT intervention led to an improvement in caregiver strain. Effective implementation of an evidence-informed and caregiver-led tool represents a necessary step towards helping palliative care providers better assess and address caregiver needs, ensuring adequate family caregiver support an

Published
2015

45. Enabling a family caregiver-led assessment of support needs in home-based palliative care: Potential translation into practice.

Author

Aoun, Samar, Toye, Christine, Deas, Kathy, Howting, Denise, Ewing, G., Grande, G., Stajduhar, K., Aoun, Samar, Toye, Christine, Deas, Kathy, Howting, Denise, Ewing, G., Grande, G., and Stajduhar, K.

Abstract

BACKGROUND: Systematic assessment of family caregivers' support needs and integrating these into service planning according to evidence-based research are vital to improving caregivers' outcomes and their capacity to provide care at end of life. AIM: To describe the experience with and feedback of nurses on implementing a systematic assessment of support needs with family caregivers in home-based palliative care, using the Carer Support Needs Assessment Tool. METHODS: This study was conducted during 2012-2014 in Silver Chain Hospice Care Service in Western Australia. This article reports on one part of a three-part evaluation of a stepped wedge cluster trial. Forty-four nurses who trialled the intervention with 233 family caregivers gave their feedback via surveys with closed- and open-ended questions (70.5% response rate). Analyses of quantitative and qualitative data were undertaken. RESULTS: The feedback of nurses was overwhelmingly positive in terms of perceived benefits in comparison to standard practice both from the family caregiver and service provider perspectives. Using the Carer Support Needs Assessment Tool was described by nurses as providing guidance, focus and structure to facilitate discussion with family caregivers and as identifying needs and service responses that would not otherwise have been undertaken in a timely manner. CONCLUSION: Our study has successfully addressed the call for alternatives to the professional assessment paradigm using the Carer Support Needs Assessment Tool approach as a caregiver-led intervention facilitated by health professionals. Integrating the Carer Support Needs Assessment Tool in existing practice is fundamental to achieving better caregiver outcomes.

Published
2015

49. P49 Higher service use amongst patients with advanced COPD and psychological co-morbidities: Associations with quality of life, co-morbidities and exacerbations: Abstract P49 Table 1

Author

Gardener, AC, primary, Farquhar, M, additional, Holt Butcher, H, additional, Moore, C, additional, Ewing, G, additional, White, P, additional, Howson, S, additional, Mahadeva, R, additional, Booth, S, additional, Burge, P, additional, and Mendonca, S, additional

Published
2015
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