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1.  Understanding the factors affecting self-management of COPD from the perspectives of healthcare practitioners: a qualitative study 
Self-management is recognised as an essential criteria for the provision of high quality care for chronic obstructive pulmonary disease (COPD). The management of COPD is usually delivered by a wide range of healthcare practitioners. This study aimed to understand the factors affecting self-management of COPD from the perspectives of the different multidisciplinary healthcare teams involved in COPD care. Semi-structured interviews were conducted with participants from primary care, specialist respiratory and pulmonary rehabilitation (PR) teams. Purposive sampling and snowballing were employed in participant recruitment. All interviews were audio-recorded and transcribed verbatim and data were analysed thematically. A total of 20 participants (eight primary care practitioners, seven respiratory specialists and five PR practitioners) were interviewed until data saturation was reached. Participants identified a range of complex and interrelated factors affecting COPD self-management that were grouped into three broad categories—patient, practitioner and organisational/system-level factors. Patient-level factors were predominantly considered as barriers, with COPD knowledge and understanding, and the individual patients’ life circumstances/context being the most prominent issues. Practitioner-level factors identified were practitioners’ speciality, interest and experience in respiratory conditions as the overarching factor that influenced how self-management was understood and practiced. A number of organisational/system-level factors were identified by all practitioners, including inconsistency of referral pathways and the wide variations of different self-management planning tools. Factors affecting self-management of COPD across these three levels need to be tackled equally in order to improve the effectiveness of interventions and to embed and integrate self-management support approaches into routine practice.
Chronic lung disease: A balanced approach for improved self-management
Better co-ordination between healthcare services, practitioners and patients may help improve self-management for chronic lung disease. Self-management is crucial for patients with chronic obstructive pulmonary disease (COPD), but it can be difficult for healthcare workers to monitor and support patient progress. Oladapo Ogunbayo at Newcastle University, UK, and co-workers conducted interviews with healthcare practitioners to explore perceived barriers to successful self-management of COPD. Three distinct categories emerged; those at patient level, practitioner level and organisational level, the needs of which should be carefully balanced to improved self-management. Patient knowledge and understanding of COPD, alongside individual life circumstances, were often barriers to effective self-care. Those practitioners with specialist respiratory knowledge took a more holistic approach to self-management than their primary care counterparts. A lack of continuity between services and across self-management planning tools presented further barriers.
doi:10.1038/s41533-017-0054-6
PMCID: PMC5603550  PMID: 28924245
2.  Proceedings of the 14th annual conference of INEBRIA 
Holloway, Aisha S. | Ferguson, Jennifer | Landale, Sarah | Cariola, Laura | Newbury-Birch, Dorothy | Flynn, Amy | Knight, John R. | Sherritt, Lon | Harris, Sion K. | O’Donnell, Amy J. | Kaner, Eileen | Hanratty, Barbara | Loree, Amy M. | Yonkers, Kimberly A. | Ondersma, Steven J. | Gilstead-Hayden, Kate | Martino, Steve | Adam, Angeline | Schwartz, Robert P. | Wu, Li-Tzy | Subramaniam, Geetha | Sharma, Gaurav | McNeely, Jennifer | Berman, Anne H. | Kolaas, Karoline | Petersén, Elisabeth | Bendtsen, Preben | Hedman, Erik | Linderoth, Catharina | Müssener, Ulrika | Sinadinovic, Kristina | Spak, Fredrik | Gremyr, Ida | Thurang, Anna | Mitchell, Ann M. | Finnell, Deborah | Savage, Christine L. | Mahmoud, Khadejah F. | Riordan, Benjamin C. | Conner, Tamlin S. | Flett, Jayde A. M. | Scarf, Damian | McRee, Bonnie | Vendetti, Janice | Gallucci, Karen Steinberg | Robaina, Kate | Clark, Brendan J. | Jones, Jacqueline | Reed, Kathryne D. | Hodapp, Rachel M. | Douglas, Ivor | Burnham, Ellen L. | Aagaard, Laura | Cook, Paul F. | Harris, Brett R. | Yu, Jiang | Wolff, Margaret | Rogers, Meighan | Barbosa, Carolina | Wedehase, Brendan J. | Dunlap, Laura J. | Mitchell, Shannon G. | Dusek, Kristi A. | Gryczynski, Jan | Kirk, Arethusa S. | Oros, Marla T. | Hosler, Colleen | O’Grady, Kevin E. | Brown, Barry S. | Angus, Colin | Sherborne, Sidney | Gillespie, Duncan | Meier, Petra | Brennan, Alan | de Vargas, Divane | Soares, Janaina | Castelblanco, Donna | Doran, Kelly M. | Wittman, Ian | Shelley, Donna | Rotrosen, John | Gelberg, Lillian | Edelman, E. Jennifer | Maisto, Stephen A. | Hansen, Nathan B. | Cutter, Christopher J. | Deng, Yanhong | Dziura, James | Fiellin, Lynn E. | O’Connor, Patrick G. | Bedimo, Roger | Gibert, Cynthia | Marconi, Vincent C. | Rimland, David | Rodriguez-Barradas, Maria C. | Simberkoff, Michael S. | Justice, Amy C. | Bryant, Kendall J. | Fiellin, David A. | Giles, Emma L. | Coulton, Simon | Deluca, Paolo | Drummond, Colin | Howel, Denise | McColl, Elaine | McGovern, Ruth | Scott, Stephanie | Stamp, Elaine | Sumnall, Harry | Vale, Luke | Alabani, Viviana | Atkinson, Amanda | Boniface, Sadie | Frankham, Jo | Gilvarry, Eilish | Hendrie, Nadine | Howe, Nicola | McGeechan, Grant J. | Ramsey, Amy | Stanley, Grant | Clephane, Justine | Gardiner, David | Holmes, John | Martin, Neil | Shevills, Colin | Soutar, Melanie | Chi, Felicia W. | Weisner, Constance | Ross, Thekla B. | Mertens, Jennifer | Sterling, Stacy A. | Shorter, Gillian W. | Heather, Nick | Bray, Jeremy | Cohen, Hildie A. | McPherson, Tracy L. | Adam, Cyrille | López-Pelayo, Hugo | Gual, Antoni | Segura-Garcia, Lidia | Colom, Joan | Ornelas, India J. | Doyle, Suzanne | Donovan, Dennis | Duran, Bonnie | Torres, Vanessa | Gaume, Jacques | Grazioli, Véronique | Fortini, Cristiana | Paroz, Sophie | Bertholet, Nicolas | Daeppen, Jean-Bernard | Satterfield, Jason M. | Gregorich, Steven | Alvarado, Nicholas J. | Muñoz, Ricardo | Kulieva, Gozel | Vijayaraghavan, Maya | Adam, Angéline | Cunningham, John A. | Díaz, Estela | Palacio-Vieira, Jorge | Godinho, Alexandra | Kushir, Vladyslav | O’Brien, Kimberly H. M. | Aguinaldo, Laika D. | Sellers, Christina M. | Spirito, Anthony | Chang, Grace | Blake-Lamb, Tiffany | LaFave, Lea R. Ayers | Thies, Kathleen M. | Pepin, Amy L. | Sprangers, Kara E. | Bradley, Martha | Jorgensen, Shasta | Catano, Nico A. | Murray, Adelaide R. | Schachter, Deborah | Andersen, Ronald M. | Rey, Guillermina Natera | Vahidi, Mani | Rico, Melvin W. | Baumeister, Sebastian E. | Johansson, Magnus | Sinadinovic, Christina | Hermansson, Ulric | Andreasson, Sven | O’Grady, Megan A. | Kapoor, Sandeep | Akkari, Cherine | Bernal, Camila | Pappacena, Kristen | Morley, Jeanne | Auerbach, Mark | Neighbors, Charles J. | Kwon, Nancy | Conigliaro, Joseph | Morgenstern, Jon | Magill, Molly | Apodaca, Timothy R. | Borsari, Brian | Hoadley, Ariel | Scott Tonigan, J. | Moyers, Theresa | Fitzgerald, Niamh M. | Schölin, Lisa | Barticevic, Nicolas | Zuzulich, Soledad | Poblete, Fernando | Norambuena, Pablo | Sacco, Paul | Ting, Laura | Beaulieu, Michele | Wallace, Paul George | Andrews, Matthew | Daley, Kate | Shenker, Don | Gallagher, Louise | Watson, Rod | Weaver, Tim | Bruguera, Pol | Oliveras, Clara | Gavotti, Carolina | Barrio, Pablo | Braddick, Fleur | Miquel, Laia | Suárez, Montse | Bruguera, Carla | Brown, Richard L. | Capell, Julie Whelan | Paul Moberg, D. | Maslowsky, Julie | Saunders, Laura A. | McCormack, Ryan P. | Scheidell, Joy | Gonzalez, Mirelis | Bauroth, Sabrina | Liu, Weiwei | Lindsay, Dawn L. | Lincoln, Piper | Hagle, Holly | Wallhed Finn, Sara | Hammarberg, Anders | Andréasson, Sven | King, Sarah E. | Vargo, Rachael | Kameg, Brayden N. | Acquavita, Shauna P. | Van Loon, Ruth Anne | Smith, Rachel | Brehm, Bonnie J. | Diers, Tiffiny | Kim, Karissa | Barker, Andrea | Jones, Ashley L. | Skinner, Asheley C. | Hinman, Agatha | Svikis, Dace S. | Thacker, Casey L. | Resnicow, Ken | Beatty, Jessica R. | Janisse, James | Puder, Karoline | Bakshi, Ann-Sofie | Milward, Joanna M. | Kimergard, Andreas | Garnett, Claire V. | Crane, David | Brown, Jamie | West, Robert | Michie, Susan | Rosendahl, Ingvar | Andersson, Claes | Gajecki, Mikael | Blankers, Matthijs | Donoghue, Kim | Lynch, Ellen | Maconochie, Ian | Phillips, Ceri | Pockett, Rhys | Phillips, Tom | Patton, R. | Russell, Ian | Strang, John | Stewart, Maureen T. | Quinn, Amity E. | Brolin, Mary | Evans, Brooke | Horgan, Constance M. | Liu, Junqing | McCree, Fern | Kanovsky, Doug | Oberlander, Tyler | Zhang, Huan | Hamlin, Ben | Saunders, Robert | Barton, Mary B. | Scholle, Sarah H. | Santora, Patricia | Bhatt, Chirag | Ahmed, Kazi | Hodgkin, Dominic | Gao, Wenwu | Merrick, Elizabeth L. | Drebing, Charles E. | Larson, Mary Jo | Sharma, Monica | Petry, Nancy M. | Saitz, Richard | Weisner, Constance M. | Young-Wolff, Kelly C. | Lu, Wendy Y. | Blosnich, John R. | Lehavot, Keren | Glass, Joseph E. | Williams, Emily C. | Bensley, Kara M. | Chan, Gary | Dombrowski, Julie | Fortney, John | Rubinsky, Anna D. | Lapham, Gwen T. | Forray, Ariadna | Olmstead, Todd A. | Gilstad-Hayden, Kathryn | Kershaw, Trace | Dillon, Pamela | Weaver, Michael F. | Grekin, Emily R. | Ellis, Jennifer D. | McGoron, Lucy | McGoron, Lucy
doi:10.1186/s13722-017-0087-8
PMCID: PMC5606215
3.  Changes over time in the health and functioning of older people moving into care homes: analysis of data from the English Longitudinal Study of Ageing 
Age and ageing  2017;46(4):693-696.
Background
the number of people requiring care home support is projected to rise in future years, but little information is available on the needs of new care home residents.
Objective
to measure the health and functioning of people moving into care homes and how they have changed between 2002 and 2015.
Setting
English Longitudinal Study of Ageing.
Participants
two hundred fifty-four of the 313 (1.99%) individuals who moved from the community into a care home, and were interviewed in the survey wave prior to entry.
Main outcome measures
changes over time for number of health conditions and functional deficits (deficits in activities of daily living (ADL), and instrumental ADLs (IADLs)), assessed in the survey wave prior to admission.
Results
over time there were significant increases in the total number of health conditions and functional deficits amongst soon to be care home entrants (P = 0.0011), the proportion with high blood pressure (OR 1.37, 95% CI: 1.17–1.62, P < 0.0001), memory problems (OR 1.33, 95% CI: 1.11–1.61, P = 0.0021) or total number of IADL deficits (P = 0.008). Non-significant increases were observed in the proportion of care home entrants with cancer (OR 1.23, 95% CI: 0.93–1.65, P = 0.15), lung disease (OR 1.21, 95% CI: 0.85–1.75), heart disease (OR 1.12, 95% CI: 0.95–1.30) and arthritis (OR 1.11, 95% CI: 0.95–1.30). Stroke and ADL deficits did not increase. No differential ageing effect was observed.
Conclusions
the support needs of care home entrants in England appear to be increasing over time. This has important implications for the provision and funding of care home places and community services.
doi:10.1093/ageing/afx046
PMCID: PMC5590718  PMID: 28402421
ageing; nursing homes; care homes; functional impairment; older people
4.  How can primary care enhance end-of-life care for liver disease? Qualitative study of general practitioners’ perceptions and experiences 
BMJ Open  2017;7(8):e017106.
Background
Liver disease is the third most common cause of premature death in the UK. The symptoms of terminal liver disease are often difficult to treat, but very few patients see a palliative care specialist and a high proportion die in hospital. Primary care has been identified as a setting where knowledge and awareness of liver disease is poor. Little is known about general practitioners’ (GPs) perceptions of their role in managing end-stage liver disease.
Objective
To explore GPs’ experiences and perceptions of how primary care can enhance end-of-life care for patients with liver disease.
Design
Qualitative interview study, thematic analysis.
Participants
Purposive sample of 25 GPs from five regions of England.
Results
GPs expressed a desire to be more closely involved in end-of-life care for patients with liver disease but identified a number of factors that constrained their ability to contribute. These fell into three main areas; those relating directly to the condition, (symptom management and the need to combine a palliative care approach with ongoing medical interventions); issues arising from patients’ social circumstances (stigma, social isolation and the social consequences of liver disease) and deficiencies in the organisation and delivery of services. Collaborative working with support from specialist hospital clinicians was regarded as essential, with GPs acknowledging their lack of experience and expertise in this area.
Conclusions
End-of-life care for patients with liver disease merits attention from both primary and secondary care services. Development of care pathways and equitable access to symptom relief should be a priority.
doi:10.1136/bmjopen-2017-017106
PMCID: PMC5588936  PMID: 28864486
terminal care; palliative care; liver diseases; patient care
5.  Features of self-management interventions for people with COPD associated with improved health-related quality of life and reduced emergency department visits: a systematic review and meta-analysis 
Background
Self-management interventions (SMIs) are recommended for individuals with COPD to help monitor symptoms and optimize health-related quality of life (HRQOL). However, SMIs vary widely in content, delivery, and intensity, making it unclear which methods and techniques are associated with improved outcomes. This systematic review aimed to summarize the current evidence base surrounding the effectiveness of SMIs for improving HRQOL in people with COPD.
Methods
Systematic reviews that focused upon SMIs were eligible for inclusion. Intervention descriptions were coded for behavior change techniques (BCTs) that targeted self-management behaviors to address 1) symptoms, 2) physical activity, and 3) mental health. Meta-analyses and meta-regression were used to explore the association between health behaviors targeted by SMIs, the BCTs used, patient illness severity, and modes of delivery, with the impact on HRQOL and emergency department (ED) visits.
Results
Data related to SMI content were extracted from 26 randomized controlled trials identified from 11 systematic reviews. Patients receiving SMIs reported improved HRQOL (standardized mean difference =−0.16; 95% confidence interval [CI] =−0.25, −0.07; P=0.001) and made fewer ED visits (standardized mean difference =−0.13; 95% CI =−0.23, −0.03; P=0.02) compared to patients who received usual care. Patients receiving SMIs targeting mental health alongside symptom management had greater improvement of HRQOL (Q=4.37; P=0.04) and fewer ED visits (Q=5.95; P=0.02) than patients receiving SMIs focused on symptom management alone. Within-group analyses showed that HRQOL was significantly improved in 1) studies with COPD patients with severe symptoms, 2) single-practitioner based SMIs but not SMIs delivered by a multidisciplinary team, 3) SMIs with multiple sessions but not single session SMIs, and 4) both individual- and group-based SMIs.
Conclusion
SMIs can be effective at improving HRQOL and reducing ED visits, with those targeting mental health being significantly more effective than those targeting symptom management alone.
doi:10.2147/COPD.S133317
PMCID: PMC5473493
self-management; emergency department visits; behavior change techniques; COPD; mental health; meta-analysis
6.  The contributions of family care-givers at end of life: A national post-bereavement census survey of cancer carers’ hours of care and expenditures 
Palliative Medicine  2017;31(4):346-355.
Background:
Family members provide vital care at end of life, enabling patients to remain at home. Such informal care contributes significantly to the economy while supporting patients’ preferences and government policy. However, the value of care-givers’ contributions is often underestimated or overlooked in evaluations. Without information on the activities and expenditures involved in informal care-giving, it is impossible to provide an accurate assessment of carers’ contribution to end-of-life care.
Aim:
The aim of this study was to investigate the contributions and expenditure of informal, family care-giving in end-of-life cancer care.
Design:
A national census survey of English cancer carers was conducted. Survey packs were mailed to 5271 people who registered the death of a relative to cancer during 1–16 May 2015. Data were collected on decedents’ health and situation, care support given, financial expenditure resulting from care, carer well-being and general background information.
Results:
In all, 1504 completed surveys were returned (28.5%). Over 90% of respondents reported spending time on care-giving in the last 3 months of the decedent’s life, contributing a median 69 h 30 min of care-giving each week. Those who reported details of expenditure (72.5%) spent a median £370 in the last 3 months of the decedent’s life.
Conclusion:
Carers contribute a great deal of time and money for day-to-day support and care of patients. This study has yielded a unique, population-level data set of end-of-life care-giving and future analyses will provide estimates of the economic value of family care-givers’ contributions.
doi:10.1177/0269216317690479
PMCID: PMC5406012  PMID: 28281406
Informal care-giving; cancer; palliative care; care-givers; cost analysis
7.  Loneliness and social isolation as risk factors for coronary heart disease and stroke: systematic review and meta-analysis of longitudinal observational studies 
Heart  2016;102(13):1009-1016.
Background
The influence of social relationships on morbidity is widely accepted, but the size of the risk to cardiovascular health is unclear.
Objective
We undertook a systematic review and meta-analysis to investigate the association between loneliness or social isolation and incident coronary heart disease (CHD) and stroke.
Methods
Sixteen electronic databases were systematically searched for longitudinal studies set in high-income countries and published up until May 2015. Two independent reviewers screened studies for inclusion and extracted data. We assessed quality using a component approach and pooled data for analysis using random effects models.
Results
Of the 35 925 records retrieved, 23 papers met inclusion criteria for the narrative review. They reported data from 16 longitudinal datasets, for a total of 4628 CHD and 3002 stroke events recorded over follow-up periods ranging from 3 to 21 years. Reports of 11 CHD studies and 8 stroke studies provided data suitable for meta-analysis. Poor social relationships were associated with a 29% increase in risk of incident CHD (pooled relative risk: 1.29, 95% CI 1.04 to 1.59) and a 32% increase in risk of stroke (pooled relative risk: 1.32, 95% CI 1.04 to 1.68). Subgroup analyses did not identify any differences by gender.
Conclusions
Our findings suggest that deficiencies in social relationships are associated with an increased risk of developing CHD and stroke. Future studies are needed to investigate whether interventions targeting loneliness and social isolation can help to prevent two of the leading causes of death and disability in high-income countries.
Study registration number
CRD42014010225.
doi:10.1136/heartjnl-2015-308790
PMCID: PMC4941172  PMID: 27091846
8.  Loneliness, social isolation and social relationships: what are we measuring? A novel framework for classifying and comparing tools 
BMJ Open  2016;6(4):e010799.
Objectives
We present a novel way of classifying and comparing measures of social relationships to help readers interpret the growing literature on loneliness and social isolation and to provide researchers with a starting point to guide their choice of measuring tool.
Methods
Measures of social relationships used in epidemiological studies were identified from two systematic reviews—one review on the association between social relationships and health and social care service use, and a second review on the association between social relationships and health. Questions from each measure were retrieved and tabulated to derive a classification of social relationship measures.
Results
We present a classification of measures according to two dimensions: (1) whether instruments cover structural or functional aspects of social relationships and (2) the degree of subjectivity asked of respondents. We explain how this classification can be used to clarify the remit of the many questionnaires used in the literature and to compare them.
Conclusions
Different dimensions of social relationships are likely to have different implications for health. Our classification of social relationship measures transcends disciplinary and conceptual boundaries, allowing researchers to compare tools that developed from different theoretical perspectives. Careful choice of measures is essential to further our understanding of the links between social relationships and health, to identify people in need of help and to design appropriate prevention and intervention strategies.
doi:10.1136/bmjopen-2015-010799
PMCID: PMC4838704  PMID: 27091822
social relationships; social epidemiology; loneliness
10.  What is different about living alone with cancer in older age? A qualitative study of experiences and preferences for care 
BMC Family Practice  2013;14:22.
Background
Increasing numbers of older patients with advanced cancer live alone but there is little research on how well health services meet their needs. The aim of this study was to compare the experiences and future preferences for care between two groups of older people with cancer in their last year of life; those who live alone, and those who live with co-resident carers.
Methods
In-depth qualitative interviews were conducted with 32 people aged between 70 and 95 years who were living with cancer. They were recruited from general practices and hospice day care, when the responsible health professional answered no to the question, of whether they would be surprised if the patient died within twelve months. Twenty participants lived alone. Interviews were recorded and transcribed and the data analysed using a Framework approach, focussing on the differences and commonalities between the two groups.
Results
Many experiences were common to all participants, but had broader consequences for people who lived alone. Five themes are presented from the data: a perception that it is a disadvantage to live alone as a patient, the importance of relational continuity with health professionals, informal appraisal of care, place of care and future plans. People who lived alone perceived emotional and practical barriers to accessing care, and many shared an anxiety that they would have to move into a care home. Participants were concerned with remaining life, and all who lived alone had made plans for death but not for dying. Uncertainty of timescales and a desire to wait until they knew that death was imminent were some of the reasons given for not planning for future care needs.
Conclusions
Older people who live alone with cancer have emotional and practical concerns that are overlooked by their professional carers. Discussion and planning for the future, along with continuity in primary care may hold the key to enhancing end-of-life care for this group of patients.
doi:10.1186/1471-2296-14-22
PMCID: PMC3640927  PMID: 23425223
Living arrangements; Aged; Aged, 80 and over; Health services for the aged; Neoplasms; Palliative care; Terminal care; Advanced care planning
11.  A comparison of strategies to recruit older patients and carers to end-of-life research in primary care 
Background
Older adults receive most of their end-of-life care in the community, but there are few published data to guide researchers on recruitment to studies in primary care. The aim of this study was to compare recruitment of patients and bereaved carers from general practices in areas with different research network support, and identify challenges in obtaining samples representative of those in need of end-of-life care.
Methods
Comparative analysis of recruitment from general practices to two face-to-face interview studies concerned with 1) carers’ perceptions of transitions between settings for decedents aged over 75 years and 2) the experiences of older patients living with cancer at the end-of-life.
Results
33 (15% of invitees) patients and 118 (25%) carers were interviewed. Carers from disadvantaged areas were under-represented. Recruitment was higher when researchers, rather than research network staff, were in direct contact with general practices. Most practices recruited no more than one carer, despite a seven fold difference in the number of registered patients. The proportion identified as eligible for patient interviews varied by a factor of 38 between practices. Forty-four Primary Care Trusts granted approval to interview carers; two refused. One gave no reason; a second did not believe that general practitioners would be able to identify carers.
Conclusion
Obtaining a representative sample of patients or carers in end-of-life research is a resource intensive challenge. Review of the regulatory and organisational barriers to end-of-life researchers in primary care is required. Research support networks provide invaluable assistance, but researchers should ensure that they are alert to the ways in which they may influence study recruitment.
doi:10.1186/1472-6963-12-342
PMCID: PMC3519499  PMID: 23016796
Patient selection; Primary health care; Caregivers; Palliative care; Aged; Recruitment to research; End-of-life care research; Research in primary care
12.  Funding health and social services for older people – a qualitative study of care recipients in the last year of life 
Objectives
This study explores the views of older adults who are receiving health and social care at the end of their lives, on how services should be funded, and describes their health-related expenditure.
Design
Qualitative interview study
Setting
North West England
Participants
30 people aged 69–93 years, diagnosed with lung cancer, heart failure or stroke and judged by health professionals to be in their last year of life. Sixteen participants lived in disadvantaged areas.
Main outcome measures
Views of older adults on funding of services.
Results
Participants expressed a belief in an earned entitlement to services funded from taxation, based on a broad sense of being a good citizen. Irrespective of social background, older people felt that those who could afford to pay for social care, should do so. Sale of assets and use of children's inheritance to fund care was widely perceived as an injustice. The costs of living with illness are a burden, and families are filling many of the gaps left by welfare provision. People who had worked in low-wage occupations were most concerned to justify their current acceptance of services, and distance themselves from what they described as welfare ‘spongers’ or ‘layabouts.’
Conclusions
There is a gap between the health and social care system that older adults expect and what may be provided by a reformed welfare state at a time of financial stringencies. The values that underpinned the views expressed – mutuality, care for the most needy, and the importance of working to contribute to society – are an important contribution to the debate on welfare funding.
doi:10.1258/jrsm.2012.110189
PMCID: PMC3360529  PMID: 22537882
14.  Leaders, leadership and future primary care clinical research 
BMC Family Practice  2008;9:52.
Background
A strong and self confident primary care workforce can deliver the highest quality care and outcomes equitably and cost effectively. To meet the increasing demands being made of it, primary care needs its own thriving research culture and knowledge base.
Methods
Review of recent developments supporting primary care clinical research.
Results
Primary care research has benefited from a small group of passionate leaders and significant investment in recent decades in some countries. Emerging from this has been innovation in research design and focus, although less is known of the effect on research output.
Conclusion
Primary care research is now well placed to lead a broad re-vitalisation of academic medicine, answering questions of relevance to practitioners, patients, communities and Government. Key areas for future primary care research leaders to focus on include exposing undergraduates early to primary care research, integrating this early exposure with doctoral and postdoctoral research career support, further expanding cross disciplinary approaches, and developing useful measures of output for future primary care research investment.
doi:10.1186/1471-2296-9-52
PMCID: PMC2565662  PMID: 18822178
15.  Retirement age caregivers and deprivation of area of residence in England and Wales 
European Journal of Ageing  2007;4(1):35-43.
Many countries in Europe are beginning to acknowledge the essential contribution of informal caregivers, as policy changes leave more people with greater needs being cared for in the community. Carers who are themselves retired are a vulnerable group. Compared to caregivers in younger age groups, a higher proportion have pre-existing disease; they may be more vulnerable to the adverse effects of caregiving on health, and many survive on low incomes. This study investigated whether ill health amongst older carers and hours of caregiving were greater in disadvantaged areas of England and Wales. We also estimated the cost of replacing this care with formal services. Data were analysed from the 2001 UK census, relating to 9.2 million males and females of pensionable age living outside of communal establishments in England and Wales. Thirteen percent of people over retirement age (1.2 million) provided care for others, more than half of whom (742,182) reported poor health. Pensioners provided care in all areas; the proportion giving care was higher in low deprivation (advantaged) areas, but both the numbers and proportion of pensioners in poor health providing many hours of care were greater in disadvantaged areas. The annual cost of replacing all informal with formal social care was estimated to lie between 14.8 and 43.9 billion Euros. Older carers are an essential support to welfare systems. If demographic shifts require any substitution of formal for informal care, this will place a significant burden on all areas, with the greatest needs likely to be in the disadvantaged areas.
doi:10.1007/s10433-007-0044-6
PMCID: PMC5546363
Caregivers; Social class; Health care costs
16.  Doctors' perceptions of palliative care for heart failure: focus group study 
BMJ : British Medical Journal  2002;325(7364):581-585.
Objectives
To identify doctors' perceptions of the need for palliative care for heart failure and barriers to change.
Design
Qualitative study with focus groups.
Setting
North west England.
Participants
General practitioners and consultants in cardiology, geriatrics, palliative care, and general medicine.
Results
Doctors supported the development of palliative care for patients with heart failure with the general practitioner as a central figure. They were reluctant to endorse expansion of specialist palliative care services. Barriers to developing approaches to palliative care in heart failure related to three main areas: the organisation of health care, the unpredictable course of heart failure, and the doctors' understanding of roles. The health system was thought to work against provision of holistic care, exacerbated by issues of professional rivalry and control. The priorities identified for the future were developing the role of the nurse, better community support for primary care, and enhanced communication between all the health professionals involved in the care of patients with heart failure.
Conclusions
Greater consideration should be given to the care of patients dying with heart failure, clarifying the roles of doctors and nurses in different specialties, and reshaping the services provided for them. Many of the organisational and professional issues are not peculiar to patients dying with heart failure, and addressing such concerns as the lack of coordination and continuity in medical care would benefit all patients.
What is already known on this topicPatients with heart failure have unmet needs for health care at the end of lifeSpecialist palliative care services see few patients with heart failureThe national service framework for coronary heart disease endorses the provision of palliative care for heart failureLittle evidence exists on how this care should be provided, and doctors' views are not knownWhat this study addsBarriers to adopting a palliative care approach in heart failure care relate to the current organisation of health services, the difficulties of prognostication, and doctors' understanding of roles and responsibilitiesDoctors believe that the general practitioner should be the central figure in palliative care for heart failure, supported by specialistsDoctors' future priorities are developing the role of nurses, increasing essential community services, such as district nursing, and improving communication with colleagues
PMCID: PMC124557  PMID: 12228136
17.  Coping with winter bed crises  
BMJ : British Medical Journal  1999;319(7224):1511-1512.
PMCID: PMC1117242  PMID: 10591690

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