It ‘makes you feel more like a person than a patient’: patients’ experiences receiving home‐based primary care (HBPC) in Ontario,Canada

The lack of effective systems to appropriately manage the health and social care of frail older adults – especially among those who become homebound – is becoming all the more apparent. Home‐based primary care (HBPC) is increasingly being promoted as a promising model that takes into account the accessibility needs of frail older adults, ensuring that they receive more appropriate primary and community care. There remains a paucity of literature exploring patients' experiences with HBPC programmes. The purpose of this study was to explore the experiences of patients accessing HBPC delivered by interprofessional teams, and their perspectives on the facilitators and barriers to this model of care in Ontario, Canada. Using certain grounded theory principles, we conducted an inductive qualitative content analysis of in‐depth patient interviews (n = 26) undertaken in the winter of 2013 across seven programme sites exploring the lived experiences and perspectives of participants receiving HBPC. Themes emerged in relation to patients' perceptions regarding the preference for and necessity of HBPC, the promotion of better patient care afforded by the model in comparison to office‐based care, and the benefits of and barriers to HBPC service provision. Underlying patterns also surfaced related to patients' feelings and emotions about their quality of life and satisfaction with HBPC services. We argue that HBPC is well positioned to serve frail homebound older adults, ensuring that patients receive appropriate primary and community care – which the office‐based alternative provides little guarantee – and that they will be cared for, pointing to a model that may not only lead to greater patient satisfaction but also likely contributes to bettering the quality of life of a highly vulnerable population.     

Putting the ‘patient’ in patient safety: a qualitative study of consumer experiences

Background Although patient safety has been studied extensively, little research has directly examined patient and family (consumer) perceptions. Evidence suggests that clinicians define safety differently from consumers, e.g. clinicians focus more on outcomes, whereas consumers may focus more on processes. Consumer perceptions of patient safety are important for several reasons. First, health‐care policy leaders have been encouraging patients and families to take a proactive role in ensuring patient safety; therefore, an understanding of how patients define safety is needed. Second, consumer perceptions of safety could influence outcomes such as trust and satisfaction or compliance with treatment protocols. Finally, consumer perspectives could be an additional lens for viewing complex systems and processes for quality improvement efforts. Objectives To qualitatively explore acute care consumer perceptions of patient safety. Design and methods Thirty‐nine individuals with a recent overnight hospital visit participated in one of four group interviews. Analysis followed an interpretive analytical approach. Results Three basic themes were identified: Communication, staffing issues and medication administration. Consumers associated care process problems, such as delays or lack of information, with safety rather than as service quality problems. Participants agreed that patients need family caregivers as advocates. Conclusions Consumers seem acutely aware of care processes they believe pose risks to safety. Perceptual measures of patient safety and quality may help to identify areas where there are higher risks of preventable adverse events.     

Care planning for long‐term conditions – a concept mapping

Objective

This article focuses on approaches within clinical practice that seek to actively involve patients with long‐term conditions (LTCs) and how professionals may understand and implement them. Personalized care planning is one such approach, but its current lack of conceptual clarity might have impeded its widespread implementation to date. A variety of overlapping concepts coexist in the literature, which have the potential to impair both clinical and research agendas. The aim of this article is therefore to explore the meaning of the concept of care planning in relation to other overlapping concepts and how this translates into clinical practice implementation.

Methods

Searches were conducted in the Cochrane database for systematic reviews, CINHAL and MEDLINE. A staged approach to conducting the concept mapping was undertaken, by (i) an examination of the literature on care planning in LTCs; (ii) identification of related terms; (iii) locating reviews of those terms. Retrieved articles were subjected to a content analysis, which formed the basis of our concept maps. (iv) We then appraised these against knowledge and experience of the implementation of care planning in clinical practice.

Results and Conclusions

Thirteen articles were retrieved, in which the core importance of patient‐centredness, shared decision making and self‐management was highlighted. Literature searches on these terms retrieved a further 24 articles. Our concept mapping exercise shows that whilst there are common themes across the concepts, the differences between them reflect the context and intended outcomes within clinical practice. We argue that this clarification exercise will allow for further development of both research and clinical implementation agendas.     

Using phronesis instead of ‘research‐based practice’ as the guiding light for nursing practice

Abstract Phronesis, a popular Aristotelian concept that emphasizes deliberation and moral action, should replace the phrase ‘research‐based practice’ as the guiding light for nursing practice. Knowledge from research is still essential, of course, but is insufficient by itself for practice. In this paper, the author describes assumptions behind the apparent superiority of research‐based knowledge, and offers a critique of this position. One critique is that by automatically accepting the superiority of research‐based knowledge other types of knowledge (e.g. intuitive, ethical, personal) are devalued. A second critique is that undeliberated, indiscriminate use of research findings may lead to inappropriate nursing practice. Phronesis is then described, and its application to nursing. For example, phronesis requires that the context of the situation be considered very carefully before acting. Aristotle stated that the goal of personal phronesis is to reach eudaimonia, or genuine happiness or ‘human flourishing’. Infusing nursing practice with phronesis means that an anthropomorphized discipline's eudaimonia would be the eudaimonia of patients. That is, nursing practice would be guided by a desire for patients' genuine happiness or human flourishing. The final section of the paper offers rebuttals to potential criticisms.     

Experiences of home‐care workers with the ‘Stay Active at Home’ programme targeting reablement of community‐living older adults: An exploratory study

To face the challenges of an ageing population, many Western countries nowadays stimulate an ageing in place policy to empower older adults to grow old in their own homes with the highest degree of self‐reliance. However, many community‐living older adults experience limitations in (instrumental) activities of daily living ((I)ADLs), which may result in a need for home‐care services. Unfortunately, home‐care workers often provide support by taking over tasks, as they are used to doing things for older adults rather than with them, which undermines their possibilities to maintain their self‐care capabilities. In contrast, reablement focuses on capabilities and opportunities of older adults, rather than on disease and dependency. Consequently, older adults are stimulated to be as active as possible during daily and physical activities. The 'Stay Active at Home' programme was designed to train home‐care workers to apply reablement in practice. To explore the experiences of home‐care workers with this programme an exploratory study was conducting in the Netherlands, between April and July, 2017. In total, 20 participants were interviewed: nine nurses (including a district nurse), 10 domestic support workers and the manager of the domestic support workers. The semi‐structured interviews focused on the experienced improvements with regard to knowledge, skills, self‐efficacy and social support. Furthermore, the most and least appreciated programme components were identified. The study has shown that home‐care workers perceived the programme as useful to apply reablement. However, they also need more support with mastering particular skills and dealing with challenging situations. Future implementation of the 'Stay Active at Home' programme can potentially benefit from small adaptions. Furthermore, future research is needed to examine whether the programme leads to more (cost‐) effective home care.     

‘Essentially it's just a lot of bedrooms’: architectural design,prescribed personalisation and the construction of care homes for later life

This article draws on ethnographic data from a UK Economic and Social Research Council (ESRC) funded study called ‘Buildings in the Making’. The project aims to open up the black box of architectural work to explore what happens between the commissioning of architectural projects through to the construction of buildings, and seeks to understand how ideas about care for later life are operationalised into designs. Drawing on recent scholarship on ‘materialities of care’ and ‘practising architectures’, which emphasise the salience of material objects for understanding the politics and practices of care, we focus here on ‘beds’. References to ‘beds’ were ubiquitous throughout our data, and we analyse their varied uses and imaginaries as a ‘way in’ to understanding the embedded nature of architectural work. Four themes emerged: ‘commissioning architectures and the commodification of beds’; ‘adjusting architectures and socio‐spatial inequalities of beds’; ‘prescribing architectures and person‐centred care beds’; and ‘phenomenological architectures and inhabiting beds’. We offer the concept prescribed personalisation to capture how practising architectures come to reconcile the multiple tensions of commodification and the codification of person centred care, in ways that might mitigate phenomenological and serendipitous qualities of life and living in care settings during later life.     

‘Makes you wanna do treatment’: Benefits of a hepatitis C specialist clinic to clients in Christchurch,New Zealand

People with hepatitis C virus (HCV) are a marginalised population that may experience discrimination in everyday contexts, including health‐care, due to the association of HCV with injecting drug use. Stigma and discrimination are known to have a range of negative effects on people with HCV, including diminished quality of life and avoidance of health‐care. The Hepatitis C Community Clinic is an integrated care service established in 2008 in Christchurch, New Zealand to provide alternative access to health‐care that is non‐judgemental and supportive. As an integrated care service, the clinic aims to improve health outcomes and quality of life through a holistic approach to health‐care for people with HCV and people who inject drugs. This qualitative study forms part of a broader mixed‐methods evaluation of the clinic, and aims to assess the role of the clinic in improving health outcomes, knowledge, lifestyle practices and psychosocial functioning of the target population. Interviews were conducted with 24 health professionals and 24 clients of the clinic between April and November 2010. Findings illustrate that the clinic is a novel model of care that is effective in accessing a hard‐to‐reach and marginalised population in part due to the non‐judgemental, caring and supportive environment that engenders trust with clients. Based on participant reports, the clinic assists clients in managing their HCV and other health concerns and in increasing their readiness for HCV treatment. Given the benefits of this community clinic to clients, it is proposed that future research investigate the feasibility and benefits of administering HCV treatment through community‐based integrated care networks.     

Effects of a 4‐week transitional care programme for discharged stroke survivors in Hong Kong: a randomised controlled trial

Stroke rehabilitation involves care issues concerning the physical, psychosocial and spiritual aspects. Hospital‐based rehabilitation has its limitations because many of the care issues only emerge when patients return home. Transitional care models supporting patients after discharge from the hospital have proved to be effective among chronically ill patients, but limited studies were conducted among stroke survivors. This study was a randomised controlled trial conducted to test the effectiveness of a transitional care programme (TCP) which was a nurse‐led 4‐week programme designed based on the assessment–intervention–evaluation Omaha System framework. Between August 2010 and October 2011, 108 stroke patients who were discharged home, able to communicate, and had slight to moderate neurological deficits and disability were randomised into control (n = 54) and intervention groups (n = 54). Data on the patient‐related and clinical outcomes were collected at baseline, 4 weeks when the TCP was completed and 8 weeks after discharge from hospital. Repeated measures analysis of variance with intention‐to‐treat strategy was used to examine the outcomes. There were significant between‐group differences in quality of life, the primary outcome measure of this study, in both physical (F(1, 104) = 10.15, P = 0.002) and mental (F(1, 104) = 8.41, P = 0.005) domains, but only the physical domain achieved a significant time × intervention interaction effect (F(1, 103) = 7.73, P = 0.006). The intervention group had better spiritual–religion–personal measures, higher satisfaction, higher Modified Barthel Index scores and lower depression scores when compared with the control group. They also had lower hospital readmission and use of emergency room rates, but only the use of emergency room had significant difference when compared to control. This study is original in testing a transitional model among stroke patients discharged from hospital. The TCP shares common features that have been proved to be effective when applied to chronically ill patients, and the duration of 4 weeks seems to be adequate to bring about immediate effects.     

‘No one is as invested in your continued good health as you should be:’ an exploration of the post‐surgical relationships between weight‐loss surgery patients and their home bariatric clinics

This article traces the post‐surgical relationship between weight‐loss surgery (WLS) patients and their home bariatric clinics. Following surgery, there is substantive drop off in patient attendance at both follow‐up appointments and support groups. While barriers to follow‐up are often discussed with the bariatric literature, patients themselves are typically defined as the problem. Based upon a thematic analysis of 217 blog posts and comments in two top patient‐led online forums, I demonstrate that bariatric patients tell a more complex story about their post‐surgical lives. I argue that WLS patients constitute a population with highly specialised medical needs that is caught between the requirements for living with surgically altered digestive systems and a lack of sufficient post‐operative follow‐up care from their home bariatric clinics. Although online forums provide spaces for patients to examine these post‐operative social and clinical experiences in critical terms, seek information and get support, ultimately the conversations serve to underline the value of personal responsibility for post‐operative outcomes–a framing that echoes that of the bariatric profession. This framing should be understood within a larger climate of weight‐based stigma and discrimination as well as neoliberal healthism.     

‘That would have been beneficial’: LGBTQ education for home‐care service providers

This paper reports qualitative findings from a pilot study that explored the lesbian, gay, bisexual, transgender and queer (LGBTQ) education needs of home‐care service providers working in one large, urban Canadian city. The pilot study builds upon research that has documented barriers to health services for diversely situated LGBTQ people, which function to limit access to good‐quality healthcare. LGBTQ activists, organisations and allies have underscored the need for health provider education related to the unique health and service experiences of sexual and gender minority communities. However, the home‐care sector is generally overlooked in this important body of research literature. We used purposeful convenience sampling to conduct four focus groups and two individual interviews with a total of 15 professionally diverse home‐care service providers. Data collection was carried out from January 2011 to July 2012 and data were analysed using grounded theory methods towards the identification of the overarching theme, ‘provider education’ and it had two sub‐themes: (i) experiences of LGBTQ education; and (ii) recommendations for LGBTQ education. The study findings raise important questions about limited and uneven access to adequate LGBTQ education for home‐care service providers, suggest important policy implications for the education and health sectors, and point to the need for anti‐oppression principles in the development of education initiatives.     

People with dementia attending farm‐based day care in Norway – Individual and farm characteristics associated with participants’ quality of life

Farm‐based day care for people with dementia is supposed to improve the participants quality of life by using activities and resources of the farm environment to promote mental and physical health. In this paper, we describe the characteristics of those attending farm‐based day care services in Norway and explore the association between individual and farm characteristics and the quality of life. A sample of 94 people with dementia who attended farm‐based day care was recruited from 25 farms between January 2017 and January 2018. The data collection was performed using standardized instruments. Information about the farms was retrieved from a former study. The association between the participants’ quality of life and their individual and/or farm characteristics was examined with a linear multilevel regression model. The participants had a mean age of 76 years, 62% were men, and 68% had additional education after primary school. Most of them had mild (54.3%) or questionable dementia (18.3%). A few participants used antipsychotics (3.7%), tranquilizers (9.9%) and painkillers (13.6%), while a higher number used antidepressants (30.9%). Quality of life was associated with the experience of having social support (p = .023), a low score on depressive symptoms (p < .001), and spending time outdoors at the farm (p < .001). The variation between the farm‐based day care services in the participants’ reported quality of life was related to time spent outdoors at the farm. In light of the present study, it seems as farm‐based day care is addressing people with dementia in an early stage, dominated by men, with quite good physical and medical condition. The strong association between quality of life and spending time outdoors underscores that facilitation for outdoor activity should be prioritized in all types of dementia care.     

‘Bourdieu’, medical elites and ‘social class’: a qualitative study of ‘desert island’ doctors

Sociologists of professions draw on Weberian theories of closure. However they have tended to ignore Bourdieu's work, which rejects Weberian notions of class and status groups as distinct ideal types and sees these concepts as inextricably linked. Bourdieu emphasises the importance of a class‐based habitus which generates orientations, inclinations and dispositions that organise practices and the perception of practice. For Bourdieu, because individuals perceive one another primarily through the status that attaches to their practices (through a symbolic veil of honour) they fail to perceive the real basis of these practices: the forms of capital that underlie the different habitus and enable their realisation. This article draws on interviews with 17 elite doctors appearing on a national (UK) radio show during which they choose eight discs to take to a desert island. According to Bourdieu, ‘nothing more clearly affirms one's “class”, nothing more infallibly classifies, than one's taste in music’. An analysis of the doctors' musical tastes and their mode of acquisition (largely, for these elites, via their family and education at independent schools), as well as other insights into their cultural capital reveals the importance of linking class and status when exploring professional status and prestige.     

Prevention of falls,malnutrition and pressure ulcers among older persons – nursing staff's experiences of a structured preventive care process

A structured and systematic care process for preventive work, aimed to reduce falls, pressure ulcers and malnutrition among older people, has been developed in Sweden. The process involves risk assessment, team‐based interventions and evaluation of results. Since development, this structured work process has become web‐based and has been implemented in a national quality registry called ‘Senior Alert’ and used countrywide. The aim of this study was to describe nursing staff's experience of preventive work by using the structured preventive care process as outlined by Senior Alert. Eight focus group interviews were conducted during 2015 including staff from nursing homes and home‐based nursing care in three municipalities. The interview material was subjected to qualitative content analysis. In this study, both positive and negative opinions were expressed about the process. The systematic and structured work flow seemed to only partly facilitate care providers to improve care quality by making better clinical assessments, performing team‐based planned interventions and learning from results. Participants described lack of reliability in the assessments and varying opinions about the structure. Furthermore, organisational structures limited the preventive work.     

An evaluation of the effectiveness of engaging Canadian clients as partners in in‐home care

This exploratory quasi‐experimental evaluation assessed the effectiveness of the use of a concrete discussion guide to promote organisation‐wide application of a partnering approach to engage older home‐care clients with chronic disease/disabilities as care partners. A post‐test‐only design with an independent pre‐test sample was used to compare selected outcomes with those of standard in‐home care. The theoretically informed discussion guide portrayed how to go about the process of empowering partnering by using language and open‐ended conversational leads to construct partnering, partnering effort and health as a resource for everyday living through social interaction. The discussion guide was provided to all providers for use with all clients in one home‐care programme in Ontario, Canada and this organisation was compared with a similar but geographically distanced organisation, also in Ontario. Seven hundred and ninety‐one randomly selected clients (mean age = 72.5 years) receiving 3+ months of in‐home care for chronic conditions/disabilities from the two home‐care programmes between September 2007 and May 2010 completed a researcher‐administered questionnaire at either baseline, 1 year or 2 years. Instruments included the Client's Partnering Experience, Health‐Promoting Partnering Effort, a modified version of Locus of Authority in Decision‐Making, the Medical Outcomes Survey Self‐Rated Health Scale, Health and Social Services Utilization and a modified Functional Independence Measure. Analysis of covariance revealed that the use of the concrete discussion guide to promote organisation‐wide application of a partnering approach achieved significantly greater client partnering experience and health‐promoting partnering effort over time than did the usual approach to in‐home‐care interactions. Using the discussion guide enhanced client/provider partnering, hence, interdependence, contributing positively to promoting clients' health as a resource for everyday living.     

Rural residents' perspectives on the rural ‘good death’: a scoping review

The ‘good death’ is one objective of palliative care, with many ‘good death’ viewpoints and research findings reflecting the urban voice. Rural areas are distinct and need special consideration. This scoping review identified and charted current research knowledge on the ‘good’ rural death through the perspectives of rural residents, including rural patients with a life‐limiting illness, to identify evidence and gaps in the literature for future studies. A comprehensive literature search of English language articles (no date filter applied) was conducted in 2016 (2 January to 14 February) using five library databases. Reference lists of included articles, recent issues of eight relevant journals and three grey literature databases were also hand‐searched. Twenty articles (for 17 studies and one systematic review) were identified after a two‐phase screening process by two reviewers, using pre‐determined inclusion criteria. Data from each study were extracted and charted, analysed using a thematic analysis of the included articles' content, and with a quantitative analysis of the scoping review. These papers revealed data collected from rural patients with a life‐limiting illness and family caregivers, rural healthcare providers, the wider rural community, rural community leaders and rural health administrators and policy makers. Rural locations were heterogeneous. Residents from developed and developing countries believe a ‘good death’ is one that is peaceful, free of pain and without suffering; however, this is subjective and priorities are based on personal, cultural, social and religious perspectives. Currently, there is insufficient data to generalise rural residents' perspectives and what it means for them to die well. Given the extreme importance of a ‘good death’, there is a need for further studies to elicit rural patient and family caregiver perspectives.     

‘You opened our eyes’: care‐giving after learning a child’s positive HIV status in rural South Africa

Caregivers of young children identified as HIV positive, residing in Agincourt, rural South Africa were advised of their child’s status. How was this knowledge received, and how did it influence care‐giving and support? Interviews were conducted in May to June 2008 with caregivers of HIV positive children aged 1–5 years, 1 year following the child’s HIV test and disclosure of status. Drawing on data from 31 semi‐structured questionnaires and 21 in‐depth interviews, we describe caregivers’ attitudes, reactions, fears and aspirations after learning a child’s HIV status, the perceived usefulness of the knowledge, barriers to care‐giving and support received. Sociodemographic data collected through the questionnaire were analysed using Stata. Qualitative data were coded in NVIVO 8 and analysed inductively to identify themes and their repetitions and variations. Although almost half of the caregivers responded negatively initially, 1 year later, almost all had accepted and valued knowing their child’s HIV status as this had enhanced their competency in care‐giving. Counselling from health providers and personal spirituality helped caregivers to accept the child’s status and cope with its implications. Most caregivers had high aspirations for the child’s future, despite some expressed difficulties associated with care‐giving, including financial constraints, information gaps and barriers to healthcare. The results indicate an opportunity for paediatric HIV screening in communities with high HIV prevalence. This would facilitate early uptake of available interventions, so enhancing the survival of HIV positive children.     

Destabilizing the ‘equipoise’ framework in clinical trials: prioritizing non‐exploitation as an ethical framework in clinical research

The framework of equipoise has been promulgated as an underlying requirement for conducting ethical clinical research. Equipoise is the term used for a state of indifference about which treatment intervention or innovation will provide the most benefit and the least harm to recipients. Drawing on healthcare, research, and ethics literature, this paper analyses the implications of equipoise from the perspective of several proponents and critics. Specifically the historical evolution of the concept based on Fried and Freedman's arguments is traced. A critique of the concept, informed by contrasting perspectives, is offered. An alternative framework of non‐exploitation as presented by Miller and Brody is argued to be superior in facilitating both the ultimate goals of research on human subjects and those of the healthcare professions'.