Context and complexity: the meaning of self‐management for older adults with heart disease

Self‐management policies have presented opportunities for patients with long‐term conditions to take control and actively improve their health. However, the work of self‐management appears to be packaged in the form of essential and desirable skills and attributes required for success. This article presents the findings of a qualitative study, employing longitudinal diary interviews with 21 patients aged between 60 and 85 years diagnosed with coronary heart disease from three contrasting general practice areas. Drawing on concepts of the care of the self and the reflexive self, this article presents the diversity of self‐management practices by older patients in the context of their lifeworld. Illustrated through individual case studies, it clearly identifies where patients are engaged self‐managers with the agency, knowledge and self‐discipline to modify their behaviour for an improved health outcome. This study highlights their life and illness perspectives as well as those of patients who are burdened with emotional insecurity, comorbidities and caring responsibilities. It shows the spectrum of relationships with health professionals that influence engaged self‐management. We suggest that policy initiatives that favour behavioural change neglect social context and the individualised practices that are a necessary response to structural and psychosocial constraints.     

Making sense of self‐care practices at the intersection of severe mental illness and physical health—An Australian study

The poor physical health of people who experience severe mental illness (SMI) is an important public health issue that has been acknowledged, yet not properly addressed. People who live with SMI perform a myriad of complex tasks in order to take care of their physical health, while receiving unpredictable levels of support and assistance from health professionals. In this qualitative study, we aimed to uncover the kinds of work people with SMI do in order to look after their physical health. In a metropolitan area in Queensland, Australia, 32 people with lived experience of SMI participated in semi‐structured, face‐to‐face interviews. Data were digitally recorded, transcribed verbatim and open coded. They were then themed using a constant comparative process. We found that people with SMI were engaged in a “rhythm of life with illness” that consisted of relatively short, acute and chaotic cycles of mental and physical illness, accompanied by much longer mental and physical illness recovery cycles. Participants engaged in three specific types of health‐related work to manage these cycles: discovery work (and the associated role of the health professional); sense‐making work to meaningfully interpret health and illness; and embedding work to become engaged self‐managers of illness and producers of health. We discuss how varying levels of support from health professionals impact consumers' self‐management of their physical and mental health; how health professionals influence consumers' experience of treatment burden; and implications for practice.     

Self‐management abilities and quality of life among frail community‐dwelling individuals: the role of community nurses in the Netherlands

The objective of the study was to determine whether community nurses in the Netherlands improve self‐management abilities and quality of life of frail community‐dwelling people. This longitudinal study was performed in the context of a larger evaluation study of the ‘Zichtbare Schakels’(Visible Link) programme, conducted to determine the quality of care provided by community nurses to community‐dwelling frail people in Rotterdam, the Netherlands. For the current study, clients seen by community workers in Rotterdam between July 2013 and November 2014 participated. Data were gathered via personal interviews by the community nurses as part of care delivery at the start (T0; n = 220) and end of care delivery (T1; n = 111 – the remaining 109 clients were still receiving care) to evaluate and improve quality of care. We measured client's quality of life (using the EQ5D), self‐management abilities (using the Self‐Management Ability Scale) and background characteristics. Results showed that clients seen by the community nurses especially experience problems when it comes to usual activities and pain/discomfort. Furthermore, quality of life was much worse among clients of the community nurses (0.51) than among frail older (aged ≥70 years) people in Rotterdam (0.61), Dutch patients with chronic illnesses [CVD (0.83), COPD (0.79) or diabetes (0.83)] and older (aged ≥65 years) people who had recently been hospitalised (0.80). Significant improvements were seen in client's self‐management and quality of life over time. Self‐management abilities at T0 and changes in self‐management abilities (T1 – T0) clearly predicted quality of life at T1. Investing in community health nurses may be beneficial for the improvement of self‐management abilities and quality of life among very frail people in the community.     

Thinking with care infrastructures: people,devices and the home in home blood pressure monitoring

The growing consumer market in health monitoring devices means that technologies that were once the preserve of the clinic are moving into spaces such as homes and workplaces. We consider how one such device, blood pressure monitors, comes to be integrated into everyday life. We pursue the concept of ‘care infrastructure’, drawing on recent scholarship in STS and medical sociology, to illuminate the work and range of people, things and spaces involved in self‐monitoring. Drawing on a UK study involving observations and interviews with 31 people who have used a consumer blood pressure monitor, we apply the concept beyond chronic illness, to practices involving consumer devices – and develop a critical account of its value. We conclude that the care infrastructure concept is useful to highlight the socio‐material arrangements involved in self‐monitoring, showing that even for ostensibly personal devices, monitoring may be a shared practice that expresses care for self and for others. The concept also helps draw attention to links between different objects and spaces that are integral to the practice, beyond the device alone. Care infrastructure draws attention to the material, but ensures that analytic attention engages with both material and social elements of practice and their connections.     

The context of coping: a qualitative exploration of underlying inequalities that influence health services support for people living with long‐term conditions

Coping with chronic illness encapsulates both practical and emotional aspects of living life in relation to one's long‐term health condition(s). Dominant health psychology approaches for understanding coping, which underpin a more recent policy discourse on ‘self‐management’, focus sharply on the person affected by illness and potentially mask the influence of overarching social structure. In this paper we draw on qualitative interviews with 48 people living with long‐term conditions (LTCs), in order to highlight the role that structural configurations such as healthcare systems may play in either helping or hindering people's efforts to cope with chronic illness. We argue that coping is a social process in which health and related services, situated within their wider political‐economic contexts, play an active role in shaping people's attempts to live well with LTCs. More specifically, health systems are sites of social and cultural capital exchange that can differentially mobilise coping resources through access, continuity of care, and coordination across services. Whilst it is essential to recognise the personal agency of people living with chronic illness, it is also vital to acknowledge the underlying inequalities that affect the ways in which services can support such resourcefulness.     

Connectivity,contest and the ties of self‐management support for type 2 diabetes: a meta‐synthesis of qualitative literature

This paper presents a meta‐synthesis of the literature on community‐based self‐management to support experiences of people diagnosed with type 2 diabetes. The aim was to synthesise findings on both formal and informal self‐management support with particular reference to the relevance and influence of the social context operating at different levels. The review forms part of EU‐WISE, a project financed through EU's 7th Framework Programme. The review was performed by systematically searching MEDLINE, PubMed, EMBASE, CINAHL, PsycINFO and Web of Science for English language publications between 2005 and 2014 presenting research conducted in Europe on the experiences and perspectives of self‐management concerns of patients diagnosed with type 2 diabetes. The search yielded 587 abstracts, which were reduced through search strategy refinement and eligibility and quality criteria to 29 papers that were included in the review. This review highlights the relevance of contextual factors operating at micro‐ and macro‐levels. The synthesis yielded six second‐order thematic constructs relating to self‐management: sense of agency and identity, the significance and meaning of social networks, minimal disruption of everyday life, economic hardship, the problem of assigning patients’ responsibility and structural influences of primary care. Using a line of argument synthesis, these themes were revisited, and a third‐order construct, connectivity emerged which refers to how links in daily life are interwoven with peoples’ social networks, local communities, economic and ideological conditions in society in a way which support self‐management activities. This meta‐synthesis indicates a need to heed the notion of connectivity as a means of mobilising and supporting the self‐management strategies of people with type 2 diabetes in everyday life.     

Challenges to developing diabetes self‐management skills in a low‐income sample in North Carolina,USA

High rates of diabetes diagnosis and poor diabetes outcomes are particularly significant in low‐income, socially disadvantaged populations. Although many social and economic predictors of poor self‐management outcomes are known, few studies have examined how these elements impact the ability to develop self‐management capacities in low‐income populations. This article presents new insights into low‐income women's challenges and successes to becoming more adept self‐managers. Interview data were collected in 2012 with a sample of low‐income, middle‐age women with type II diabetes recruited from a non‐profit medical clinic serving low‐income clients in North Carolina, United States. Data were analysed using a grounded theory approach. Developing self‐management skills within disadvantaged life contexts involved negotiating three related, overlapping sub‐processes: negotiating access to care systems, negotiating disruptions to diabetes self‐management patterns, and negotiating self‐care knowledge. Developing diabetes self‐management skills is a long and arduous process. Data and analysis presented here help explain how disadvantaged life contexts can impact self‐managers' efforts to develop self‐management skills and why continued support is important for reducing and preventing future problems. These initial findings suggest that future studies and intervention development on the topic are warranted.     

A day in the life of a Ménière's patient: understanding the lived experiences and mental health impacts of Ménière's disease

Concepts of social practice are increasingly being used to understand experiences of everyday life, particularly in relation to consumption and healthy lifestyles. This article builds on this in the context of lives disrupted and reshaped by chronic illness. It uses social practice theory to examine the lived experiences of individuals with Ménière's disease; a long‐term progressive vestibular disorder, defined by episodes of severe and debilitating vertigo, aural fullness, tinnitus and sensorineural hearing loss. Drawing on the findings of 20 in‐depth narrative interviews with Ménière's patients, and eight spousal/partner interviews, we explore the impacts of the condition on sensory, temporal, spatial and social dimensions of the body. In doing so, we highlight the intensely embodied sensory and emotional work required to maintain connections between the ‘competences’, ‘materials’ and ‘meanings’ that constitute and sustain the performance of both mundane and meaningful social practices over time. As connections between these elements of social practice are disrupted during more active phases of the condition, affected individuals may be defected from old practices and recruited to new ones, often requiring both time and social support to find meaning or pleasure in these alternative ways of being in the world.     

Personal strengths reported by people with chronic illness: A qualitative study

Background

Self‐management of chronic illness can be highly demanding and people need to mobilize their personal strengths to live well with their condition. More knowledge is needed about how people with chronic illness perceive and use their personal strengths as a basis for better integrating empowering person‐centred approaches into health care.

Objective

To explore what people with chronic illness describe as their strengths relevant to their health and well‐being.

Setting and Participants

Thirty‐nine participants (11 men) from 4 outpatient self‐management programmes were recruited to individual or group interviews. Participants included patients with chronic respiratory disease (n = 7), chronic pain (n = 18) and morbid obesity (n = 14). Interviews were analysed using content analysis.

Results

A number of personal strengths were reported and categorized into 3 domains: (i) Internal strengths, (ii) External strengths and (iii) Self‐management strategies. Internal strengths included being persistent, having a positive outlook, being kind and caring, experiencing positive emotions, being kind towards oneself, reconciling oneself with the situation, having courage and having knowledge and insight. External strengths included support from family, friends, peers and health‐care providers. Self‐management strategies included being active, planning and prioritizing, reducing stress, goal setting and seeking knowledge and help.

Discussion and Conclusion

The study provides insights into personal strengths as reported by people with chronic illness. The results complement prior findings on strengths in people with health challenges and can aid in incorporating person‐centred approaches into health care.     

Understanding health through social practices: performance and materiality in everyday life

The importance of recognising structure and agency in health research to move beyond methodological individualism is well documented. To progress incorporating social theory into health, researchers have used Giddens’ and Bourdieu's conceptualisations of social practice to understand relationships between agency, structure and health. However, social practice theories have more to offer than has currently been capitalised upon. This article delves into contemporary theories of social practice as used in consumption and sustainability research to provide an alternative, and more contextualised means, of understanding and explaining human action in relation to health and wellbeing. Two key observations are made. Firstly, the latest formulations of social practice theory distinguish moments of practice performance from practices as persistent entities across time and space, allowing empirical application to explain practice histories and future trajectories. Secondly, they emphasise the materiality of everyday life, foregrounding things, technologies and other non‐humans that cannot be ignored in a technologically dependent social world. In concluding, I argue the value of using contemporary social practice theories in health research is that they reframe the way in which health outcomes can be understood and could inform more effective interventions that move beyond attitudes, behaviour and choices.     

The impact of the economic recession on well‐being and quality of life of older people

The importance of economic well‐being is recognised in the recent UK Government policy. Older people may be particularly vulnerable to economic fluctuations as they are reliant on fixed incomes and assets, which are reducing in value. Within the literature, little is understood about the impact of the current economic downturn on people’s general quality of life and well‐being and, in particular, there is little research on the financial experiences and capability of the older age group, a concern in light of the ageing UK population. This article reports a qualitative research study into the nature of older peoples’ vulnerability by exploring their perceptions of the impact of the economic recession on their well‐being and quality of life. It explores specifically a group of older people who are not the poorest within the ageing population, but who may be described as the ‘asset rich‐income poor’ group. Key themes relate to the impact of the recession on the costs of essential and non‐essential items and dimensions of mental, physical and social well‐being. Implications for health and social care practice in meeting the needs of older people during times of economic recession are then explored. The paper adds to the debate by demonstrating that the recession is having adverse consequences for older people’s quality of life in terms of economic, mental and social well‐being, although there is also evidence that some of them are equipped with certain resilience factors due to their money management and budgeting skills.     

The role of narrative and metaphor in the cancer life story: a theoretical analysis

Being diagnosed with cancer can be one of those critical incidents that negatively affect the self. Identity is threatened when physical, psychological, and social consequences of chronic illness begin to erode one’s sense of self and challenge an individual’s ability to continue to present the self he or she prefers to present to others. Based on the notion of illness trajectory and adopting a Ricoeurian narrative perspective, this theoretical paper shall explore the impact of cancer disease on identity and establish the crucial importance of metaphor in the narratives of life with cancer. Findings indicate that in cancer narratives the illness experience supplies the narrative structure with temporal and spatial meeting points that make the narrative comprehensible and meaningful. Cancer forces identity changes not only from having to endure the long-term physical and psychosocial effects of the disease, but also from inevitable existential questions about life’s meaning. Improved medical knowledge today means improved ethnomedical practices. Metaphor can bridge the gap between the cancer experience and the world of technology and treatment, helping patients to symbolically control their illness.     

Theorising health professionals’ prevention and management practices with children and young people experiencing self‐harm: a qualitative hospital‐based case study

Self‐harm in young people remains a significant concern. Studies of emergency departments have centred on negative professional attitudes. There has been limited interrogation and theorisation of what drives such attitudes, and the contexts that sustain them. Adopting a complex systems lens, this study aimed to explore how systems shape professional and patient interactions. It draws upon interviews with healthcare and affiliated professionals (n = 14) in a UK case study hospital, with primary focus on the emergency department. Data were analysed using a thematic approach and the principles of grounded theory. Four themes emerged, with the first three centralising how professionals’ practices operate within: (1) a framework of risk management; (2) expectations of progressing patients through the care pathway; and (3) a culture of specialist expertise, with resulting uncertainty about who is responsible for self‐harm. The fourth theme considers barriers to system change. A small number of participants described efforts to enact positive modifications to practices, but these were frustrated by entrenched system structures. The potential detrimental impacts for patient care and professional wellbeing are considered. Future practice needs systemic action to support professionals in treating patients experiencing self‐harm, while future research requires more ethnographic explorations of the complex system in situ.     

Time to manage: patient strategies for coping with an absence of care coordination and continuity

This paper examines how people with chronic illnesses respond to absences of continuity and coordination of care. Little work has been done on how the ill person might mitigate flaws in a less than optimal system. Our qualitative research, carried out among 91 participants in Australia, reveals that people with chronic illnesses create strategies to facilitate the management of their care. These strategies included efforts to improve communication between themselves and their health care practitioners; keeping personal up‐to‐date medication lists; and generating their own specific management plans. While we do not submit that it is patients’ responsibility to attend to gaps in the health system, our data suggests that chronically ill people can, in and through such strategies, exert a measure of agency over their own care; making it effectively more continuous and coordinated. Participants crafted strategies according to the particular social and bodily rhythms that their ongoing illnesses had lent to their lives. Our analysis advances the view that the ill body itself is capable of enfolding the health system into the rhythms of illness – rather than the ill body always fitting into the overarching structural tempo. This entails an agent‐centric view of time in illness experience. A Virtual Abstract of this paper can be found at: https://youtu.be/UwbxlEJOTx8     

Understanding young peoples' experience of chronic illness: a systematic review

Objective It has been reported that the diagnosis of a chronic illness increases a child's susceptibility to future mental health problems. Accordingly, the objective of the current review was to summarise the best available evidence that described a young person's experience of chronic illness and make recommendations towards the promotion of mental health and prevention of future mental health difficulties. Inclusion criteria The review considered qualitative research that used the voices of young people (under 18?years) to describe their experience of chronic illness and the impact it had on their lives. Search strategy The search strategy sought to find both published and unpublished research papers (limited to the English language). An extensive search was performed using the following databases: PubMed, CINAHL, Web of Science, PsycInfo, Aust Health, Dissertation Abstract International, Expanded Academic Index, Health Source Nursing, and Academic Search Elite. In addition, the reference lists of identified papers were hand searched, to capture all pertinent material, as well as relevant worldwide web sites. Methodological quality Each paper was assessed by two reviewers for methodological quality prior to inclusion in the review using the critical appraisal instrument (Qualitative Assessment and Review Instrument (QARI)?) from software developed by the Joanna Briggs Institute (JBI). Results A total of 18 qualitative papers were included in the review (nine grounded theory, six phenomenology, one ethnography, one social ecological, and one multiple case study). Forty-four papers were initially identified but 26 were excluded as they did not meet the inclusion criteria. Findings were extracted and meta-synthesised using JBI-QARI. Five syntheses about a young person's experience of chronic illness were derived: (i) the experience of chronic illness makes young people feel uncomfortable in their body and world; (ii) the experience of chronic illness disrupts 'normal' life; (iii) the experience of chronic illness is not all bad; (iv) ways of getting through the chronic illness experience, 'what others can do'; and (v) ways of getting through the chronic illness experience, 'what I can do'. Conclusion A positive perspective needs to be taken to promote mental health in young people with chronic illness; clinicians, families and interventions need to (i) bolster their sense of self; (ii) normalise the experience; (iii) foster its positive impact; (iv) help them accept the situation; and (v) help to develop the future-orientated coping strategies that will provide them with a sense of hope.     

Nurses’ elicitation of patient error as a practice in training end‐stage renal patients in automated home peritoneal dialysis

As part of a reorganisation of the delivery of health care in Denmark therapies for chronic medical conditions are moved out of hospitals and disease‐specific patient education programmes instituted to train patients to assume responsibility for treating their disease at home, that is, perform tasks and functions traditionally done by healthcare professionals. Drawing on video‐recordings (90:25h) from a programme for self‐management of end‐stage renal disease through automated home peritoneal dialysis, the study employs conversation analysis to examine nurses’ instructional practices for providing patients with the necessary knowledge, skill and competences. Showing training to rely on an error‐based monitoring strategy, the study demonstrates that rather than solely waiting for random errors to emerge, nurses on occasion steer patients towards specific errors to bring about particular instructional opportunities. Surprising given the seriousness of the therapy, this elicitation of error is shown to reflect a deliberate instructional choice; nurses promote select errors to impart patients with an understanding of the procedural logic behind the therapy and medical technology. The study argues that training patients for chronic disease self‐management and providing them with a proficiency level, normally associated with certified professionals, necessitates pushing patients beyond what is strictly accurate and exposing them to medically delicate events.     

Patient–professional partnerships and chronic back pain self‐management: a qualitative systematic review and synthesis

Chronic back pain is common, and its self‐management may be a lifelong task for many patients. While health professionals can provide a service or support for pain, only patients can actually experience it. It is likely that optimum self‐management of chronic back pain may only be achieved when patients and professionals develop effective partnerships which integrate their complementary knowledge and skills. However, at present, there is no evidence to explain how such partnerships can influence patients' self‐management ability. This review aimed to explore the influence of patient–professional partnerships on patients' ability to self‐manage chronic back pain, and to identify key factors within these partnerships that may influence self‐management. A systematic review was undertaken, aiming to retrieve relevant studies using any research method. Five databases were searched for papers published between 1980 and 2014, including Cochrane Library, CINAHL, Medline, EMBASE and PsycINFO. Eligible studies were those reporting on patients being supported by professionals to self‐manage chronic back pain; patients being actively involved for self‐managing chronic back pain; and the influence of patient–professional partnerships on self‐management of chronic back pain. Included studies were critically appraised for quality, and findings were extracted and analysed thematically. A total of 738 studies were screened, producing 10 studies for inclusion, all of which happened to use qualitative methods. Seven themes were identified: communication, mutual understanding, roles of health professionals, information delivery, patients' involvement, individualised care and healthcare service. These themes were developed into a model suggesting how factors within patient–professional partnerships influence self‐management. Review findings suggest that a partnership between patients and professionals supports patients' self‐management ability, and effective communication is a fundamental factor underpinning their partnerships in care. It also calls for the development of individualised healthcare services offering self‐referral or telephone consultation to patients with chronic conditions.