Understanding Help Seeking for Chronic Joint Pain:Implications for Providing Supported Self-Management

Osteoarthritis-related joint pain is prevalent and potentially disabling. United Kingdom clinical guidelines suggest that patients should be supported to self-manage in primary care settings. However, the processes and mechanisms that influence patient consultation decisions for joint pain are not comprehensively understood. We recruited participants (N = 22) from an existing longitudinal survey to take part in in-depth interviews and a diary study. We found that consultation decisions and illness actions were ongoing social processes. The need for and benefits of consulting were weighed against the value of consuming the time of a professional who was considered an expert. We suggest that how general practitioners manage consultations influences patient actions and is part of a broader process of defining the utility and moral worth of consulting. Recognizing these factors will improve self-management support and consultation outcomes

A mixed methods study to investigate needs assessment for knee pain and disability: population and individual perspectives

<p>Abstract</p> <p>Background</p> <p>The new Musculoskeletal Services Framework outlines the importance of health care needs assessment. Our aim was to provide a model for this for knee pain and disability, describing felt need (individual assessment of a need for health care) and expressed need (demand for health care). This intelligence is required by health care planners in order to implement the new Framework.</p> <p>Methods</p> <p>A multi-method approach was used. A population survey (n = 5784) was administered to adults aged 50+ registered with 3 general practices. The questionnaire contained a Knee Pain Screening Tool to identify the prevalence of knee pain and health care use in the population, and the Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC). Survey responders who scored "severe" or "extreme" on at least one item on the pain or physical function scale on the WOMAC were categorised into "severe" groups. Qualitative interviews were undertaken with 22 survey responders to explore in detail the experience of living with knee pain and disability. A sample of interviewees (n = 10) completed an open format patient diary to explore the experience of knee pain in everyday life.</p> <p>Results</p> <p>The 12-month period prevalence of knee pain was 49.5%, of which half was severe. Severe difficulties were reported with domestic duties, bending, bathing, climbing stairs and getting in or out of a car. Some self-care is occurring. The majority (53%) of responders with severe pain or disability had not consulted their GP in the last 12 months. The qualitative study revealed reasons for this including a perception that knee pain is part of normal ageing, little effective prevention and treatment is available and the use of medications causes side effects and dependency.</p> <p>Conclusion</p> <p>This study adds to previous work by highlighting a gap between felt and expressed need and the reasons for this mismatch. There is evidence of self-management, but also missed opportunities for effective interventions (e.g. lifestyle advice). A targeted and integrated approach between clinicians and health care planners for primary and secondary prevention is required if aspects of the new Musculoskeletal Services Framework are to be successfully implemented.</p

‘Idle Devils’ and ‘Household Engineers’: Identity in Chronic Widespread Pain

Chronic widespread pain, in which pain is experienced in multiple bodily areas, is estimated to affect between 4.7% and 11.2% of the population but little is known about the experiences of this group of people. Previous research on chronic illness has offered insights into the ways in which sufferers attempt to construct new identities or maintain old ones, which may be relevant to the experience of people with chronic widespread pain. This paper is based on ongoing research which uses in-depth interviews, diaries and family member interviews to explore the experiences of this group of people. The paper uses the accounts of two men and their spouses to explore the ways in which key features of chronic widespread pain may influence identity. For Harry, the invisibility of pain raises possible accusations of ‘idleness’ or malingering, leading to attempts to maintain identity as a worker, despite the uncertainties of a chronic condition. Harry attempts to reduce the impact of his illness on his identity, through presenting himself as part of the wider group of the unemployed, leading to additional tensions. In contrast, Duncan creates a new identity as a ‘household engineer’, demonstrating his physical competence and control over aspects of his condition through performance of household chores. He, and his wife, present his pain onset as a positive opportunity to renegotiate their roles within the family. The accounts of Harry and Duncan provide insight into the experiences of living with chronic widespread pain and the different ways in which lost identities can be recreated

Exploring engagement with digital screens for collecting patient feedback in clinical waiting rooms: The role of touch and place

From SAGE Publishing via Jisc Publications RouterHistory: epub 2019-12-09Publication status: PublishedFunder: Health Services and Delivery Research Programme; FundRef: https://doi.org/10.13039/501100002001; Grant(s): 14/156/16Health service settings are increasingly installing digital devices to enable people to engage digitally with multiple processes, including automated ‘check-in’, as well as collecting feedback on experiences of care. In addition, policy is increasingly driving digital agendas to promote patient engagement with online services, management of health records and routine monitoring. While this tendency towards widespread digital diffusion has been viewed as a means of enabling greater empowerment of patients and improved responsiveness of services to ‘patient voice’, social scientists have provided critical insights on the use of digital technologies in practice. However, there remains limited understanding of the mechanisms and contexts for digital engagement. In particular, there is a need for further research on the sensory and spatial aspects of engagement that are integral to everyday use (or non-use) of technology in practice. This article reports new insights from detailed qualitative case studies utilising in-depth interviews with patients, carers and staff, in addition to ethnographic observations of different digital modalities and their usage in specific health care contexts. A sociomaterial approach and concepts of affective atmosphere and technogeography are drawn upon to analyse the role of touch and place in the collection of digital feedback in multiple waiting room settings for people with physical and mental health long-term conditions. The findings highlight how barriers to engagement varied by context such as particular concerns about privacy for those with mental health problems and physical and sensory barriers for those with physical impairments. The findings demonstrate how digital inequalities can play out in practice and have implications for the design and development of digital innovations and tackling inequalities that may be associated with implementation of new digital technologies in healthcare

Implementing a digital patient feedback system: an analysis using normalisation process theory

Background: Patient feedback in the English NHS is now widespread and digital methods are increasingly used. Adoption of digital methods depends on socio-technical and contextual factors, alongside human agency and lived experience. Moreover, the introduction of these methods may be perceived as disruptive of organisational and clinical routines. The focus of this paper is on the implementation of a particular digital feedback intervention that was co-designed with health professionals and patients (the DEPEND study). Methods: The digital feedback intervention was conceptualised as a complex intervention and thus the study focused on the contexts within which it operated, and how the different participants made sense of the intervention and engaged with it (or not). Four health care sites were studied: An acute setting, a mental health setting, and two general practices. Qualitative data was collected through interviews and focus groups with professionals, patients and carers. In total 51 staff, 24 patients and 8 carers were included. Forty-two observations of the use of the digital feedback system were carried out in the four settings. Data analysis was based on modified grounded theory and Normalisation Process Theory (NPT) formed the conceptual framework. Results: Digital feedback made sense to health care staff as it was seen as attractive, fast to complete and easier to analyse. Patients had a range of views depending on their familiarity with the digital world. Patients mentioned barriers such as kiosk not being visible, privacy, lack of digital know-how, technical hitches with the touchscreen. Collective action in maintaining participation again differed between sites because of workload pressure, perceptions of roles and responsibilities; and in the mental health site major organisational change was taking place. For mental health service users, their relationship with staff and their own health status determined their digital use. Conclusion: The potential of digital feedback was recognised but implementation should take local contexts, different patient groups and organisational leadership into account. Patient involvement in change and adaptation of the intervention was important in enhancing the embedding of digital methods in routine feedback. NPT allowed for a in-depth understanding of actions and interactions of both staff and patients

Achieving change in primary care—causes of the evidence to practice gap : systematic reviews of reviews

Acknowledgements The Evidence to Practice Project (SPCR FR4 project number: 122) is funded by the National Institute of Health Research (NIHR) School for Primary Care Research (SPCR). KD is part-funded by the National Institute for Health Research (NIHR) Collaborations for Leadership in Applied Research and Care West Midlands and by a Knowledge Mobilisation Research Fellowship (KMRF-2014-03-002) from the NIHR. This paper presents independent research funded by the National Institute of Health Research (NIHR). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health. Funding This study is funded by the National Institute for Health Research (NIHR) School for Primary Care Research (SPCR).Peer reviewedPublisher PD

Living with multimorbidity? The lived experience of multiple chronic conditions in later life

Multimorbidity is defined biomedically as the co-existence of two or more long-term conditions in an individual. Globally, the number of people living with multiple conditions is increasing, posing stark challenges both to the clinical management of patients and the organisation of health systems. Qualitative literature has begun to address how concurrency affects the self-management of chronic conditions, and the concept of illness prioritisation predominates. In this article, we adopt a phenomenological lens to show how older people with multiple conditions experience illness. This UK study was qualitative and longitudinal in design. Sampling was purposive and drew upon an existing cohort study. In total, 15 older people living with multiple conditions took part in 27 in-depth interviews. The practical stages of analysis were guided by Constructivist Grounded Theory. We argue that the concept of multimorbidity as biomedically imagined has limited relevance to lived experience, while concurrency may also be erroneous. In response, we outline a lived experience of multiple chronic conditions in later life, which highlights differences between clinical and lay assumptions and makes the latter visible

Acceptability of a vocational advice service for patients consulting in primary care with musculoskeletal pain: A qualitative exploration of the experiences of general practitioners, vocational advisers and patients

Aims: To explore the experiences of GPs, vocational advisors and patients towards a new vocational advice (VA) service in primary care, using qualitative interviews. Methods This study was nested within the Study of Work And Pain (SWAP) cluster randomised controlled trial. The SWAP trial located a VA service within three general practices in Staffordshire. Interviews took place with 10 GPs 12 months after the introduction of the VA service, 4 vocational advisors whilst the VA service was running and 20 patients on discharge from the VA service. The data were analysed using the 'constant comparative' method, which is a variation of grounded theory. Results: The key factors determining the acceptability and perceived effectiveness of the VA service from the perspective of the three groups of stakeholders were 1) the timing of referrals to the VA, 2) the perceived lack of patient demand for the service, and 3) role uncertainty experienced by VAs. Conclusions: Early vocational intervention may not be appropriate for all musculoskeletal patients with work difficulties. Indeed, many patients felt they did not require the support of a VA, either because they had self-limiting work difficulties and/or already had support mechanisms in place to return to work. Future VA interventions may be better implemented in a targeted way so that appropriate patients are identified with characteristics which can best be addressed by the VA service

Living with multimorbidity: medical and lay healthcare approaches

Multimorbidity is rapidly becoming the norm rather than the exception in healthcare. Research on this issue is increasing and this review discusses a selection of clinical and social science literature. The focus is on understanding the complexity of the lived experience of multimorbidity and how this is presented in clinical encounters, drawing on examples of arthritis within a multimorbidity context. Taking into account the biophysical, psychological, social and cultural factors that shape multimorbidity this paper calls for a re-conceptualization of the concept, allowing a more dynamic and holistic approach

The Keele community knee pain forum: action research to engage with stakeholders about the prevention of knee pain and disability

<p>Abstract</p> <p>Background</p> <p>Involvement of users in health care research is central to UK health care policy, and guidelines for involvement exist. However, there are limited examples in rheumatology research. The aim of this study was to establish a community knee pain forum aimed at engaging stakeholders in design, dissemination and prioritisation of knee pain research.</p> <p>Methods</p> <p>Ten people were recruited to the forum representing a wide range of agencies. These included Weight Watchers, the leisure industry, Beth Johnson Foundation, health and social care professionals and the public. Three two-hour meetings over a two-year period were held. Experienced qualitative researchers facilitated each meeting. Written feedback after each meeting was elicited, and a short evaluation form was mailed to all members after the final meeting.</p> <p>Results</p> <p>Establishing and maintaining a forum of mixed members required careful preparation and ongoing support. Meetings had to be well-structured in order to allow for balanced participation of lay and professional users. Users contributed to the design of methods, provided ideas for dissemination and set priorities for further research. Clear documentation of meetings ensured that users' contributions to the research cycle were transparent.</p> <p>Conclusion</p> <p>Our knee pain forum illustrates that community engagement can have a positive impact on the development, dissemination and implementation of health research. Engaging with non-academic partners enables mutual learning and this enhances the quality of NHS research.</p