Self-management is recommended by policy and clinical guidelines as a way to contend with the gro... more Self-management is recommended by policy and clinical guidelines as a way to contend with the growing incidence of osteoarthritis-related joint pain in an ageing population. Sociologists assert that self-management is as much about lay strategies for dealing with the biographically disruptive qualities of chronic illness as opposed to solely complying with medical regimens. The original concept of biographical disruption coined by Bury is not uncontested. Chronic joint pain has been characterised as featuring 'co-existing meanings' of significance and consequence. The former conferring no biographical disruption due to osteoarthritis being associated with 'normal ageing' and the latter causing biographical disruption due to the corporeal limitations joint pain imparts, which, in turn, can influence whether, why and how self-management is undertaken. This article reports findings from repeat interviews and a diary study completed by 22 participants with chronic knee pain. We explore the co-existing but temporally divergent 'meanings as significance' associated with knee pain. Participants describe the onset and current experience of the pain in terms of biographical normality (retrospective or contemporaneous meanings). Future meanings as significance are mediated by cultural beliefs about ageing and current physical consequences of the condition, and also have a distinct character of their own. Knee pain is associated with the possibility of disability and harbours a distinct risk; potential disruption to everyday social relationships, notably relating to care and dependency. In turn, future meanings of significance influence the preventative self-management strategies that people utilise. We argue for a more cogent theoretical understanding of temporal dimensions of biographical disruption, biographical work and subsequent self-management by utilising and extending the thought of Bury, and Corbin and Strauss. Doing so helps to understand patient self-management strategies and facilitates self-management support in clinical settings for osteoarthritis and potentially other chronic conditions.
The impact of pain and chronic illness on the family has been documented, but there is little inf... more The impact of pain and chronic illness on the family has been documented, but there is little information about living with chronic widespread pain in the context of the family. This article uses data from a qualitative study of the experience of living with chronic widespread pain to examine the experience and meaning of support for people with this condition in the context of their families. It focuses on the varying, dynamic and reciprocal nature of practical and emotional support in the family. Family members may provide support but are also receivers of support from the person with chronic widespread pain. The factors mediating the provision of this support are also explored, including the nature of the pain and the needs of the person with pain, and the roles, responsibilities and characteristics of other family members.
Multi-morbidity is receiving considerable attention in public policy, health and social care. Fro... more Multi-morbidity is receiving considerable attention in public policy, health and social care. From the perspective of the individual, multi-morbidity is a more complex experience than solely having a clinical diagnosis. In this article, we will argue that understanding multi-morbidity can be facilitated by considering the relationship between adversity (in this case multi-morbidity), resilience and social connectedness within a life course framework. This provides an approach that can capture the dynamics of social relationships, social connectedness and the fluctuations in the experience of multi-morbidity. We draw on a qualitative study of 17 people who have multiple conditions, but consider themselves as being able to maintain a sense of identity and self over time and in the face of adversity. From their accounts, a more varied picture emerges of living with multi-morbidity. This then depicts a more realistic representation of how each person shapes their multi-morbidity and resilient responses within their own social context, which can help to formulate more effective ways of supporting them.
Collaboration between health and social services is important when assessing the needs of clients... more Collaboration between health and social services is important when assessing the needs of clients and evaluating outcomes resulting from planned interventions. This article looks at the reality of interprofessional collaboration in developing services for people with physical disabilities. It focuses on the use of formal measurement tools such as the Functional Limitations Profile and discusses the way in which such tools can be used. The possible mismatch between clients' own perception of need and that of professionals is highlighted. Furthermore, the use of qualitative research complements understanding, because it allows for contextual understanding of the FLP scores.
Background: The number of people living with more than one chronic illness (multimorbidity) is in... more Background: The number of people living with more than one chronic illness (multimorbidity) is increasing. People living with multimorbidity are likely to be active participants in the management and decision making processes around their own conditions. However, emerging evidence suggests that individual patient priorities and decision making processes in relation to multimorbidity are complex. Patients' social networks—family, friends, and work colleagues—have been identified as an important factor in shaping the ways that patients live with and manage chronic illness. Social networks are understood as a source of social resources and are increasingly recognized in emerging models of healthcare. This study addresses the patient experience of living with both OA and cardiovascular disease (CVD); in particular, it addresses the role of patients' social networks in relation to various aspects of illness self-management. Methods: The study sample was drawn from an on-going cohort study into OA/CVD comorbidity. Study participants have a diagnosis of both OA and CVD (all participants have further additional conditions). In-depth qualitative interviews were conducted at multiple time points. Interviews focused upon issues relating to living with and managing concurrent conditions, and the role that participants' social networks played in shaping these experiences. Results: Social networks were found to be a key factor in patients' experiences of multimorbidity. Social networks were an important source of social support—including health information, practical, and emotional support—and played a key role in how patients understand their illnesses. Patients' social networks also influenced the ways in which patients prioritized and managed concurrent conditions, for example, in relation to how they managed polypharmacy and navigated services. However, there were also examples where social networks had a negative affect on how multimorbidity was experienced, for example, some participants spoke of disagreements with their significant others in relation to how their illnesses should be managed. Conclusions: The patient experience of living with and managing multimorbidity is often highly complex. Patients with multimorbidity routinely draw upon their social network as a source of support and advice. It may be useful to consider issues around the management of multimorbidity in the context of patients' inter-personal social relationships.
This article draws on findings from a study of eight people (aged 40-60) with chronic widespread ... more This article draws on findings from a study of eight people (aged 40-60) with chronic widespread pain and their families, living in the West Midlands area of the UK. Data were generated through a series of in-depth interviews, based on a lifegrid and on participants' diaries. We explore the experience of chronic widespread pain in the context of sufferers' biographies, examining how people attempt to account for and give meaning to their pain onset and development and how they remake identity following disruption to their lives. We use these accounts to consider whether chronic widespread pain is biographically disruptive, or whether any of the alternative notions better describe the experience. We conclude that the consideration of context in biographical disruption should extend to lifestage and perceived life expectancy.
Objective: To describe older people's everyday experience and context of living with knee pai... more Objective: To describe older people's everyday experience and context of living with knee pain and disability, and to explore the potential of open-format diaries in accessing these experiences. Methods: This was a diary study, embedded in a larger mixed-method study. Ten people who participated in a qualitative interview study volunteered to keep an open-format diary over a period of 1 week. Results: Diaries provided current and historical details about people's lives and their health. The diaries set these experiences within the context of daily life, and combined description with reflection. Themes covered included: causes of pain, symptoms and treatments, consultations, and co-morbidity. Discussion: Open-format diaries allow insights into the complex and contextual experience of pain and disability, and because of the contemporaneous detail, can be helpful to clinicians' holistic understanding of the impact of knee pain on people's quality of life. This method provides descriptive material that complements survey and qualitative interview data.
Self-managing chronic musculoskeletal pain is predominantly framed within a discourse of modifyin... more Self-managing chronic musculoskeletal pain is predominantly framed within a discourse of modifying behaviour, or lifestyle risk factors such as diet, weight loss and exercise by policymakers, researcher and clinicians. Little research has been conducted which explores how 'risk' is understood or encountered by those with joint pain and how it may relate to self-management. Drawing from serial interviews and a diary study with 22 participants, the findings demonstrate that people with chronic pain engage in a process of assessing and adapting to hazardous or pain conferring situations in relation to daily activities. 'Risks' are embedded within a dialectic between corporeal experience and the design features of everyday social environments. Self-management, in this context, is not necessarily solely related to following clinical advice, rather it includes dealing with 'risks' of pain, hazards relating to bodily limitations and the environment, and ensuring the ability to continue with valued activities. Findings contribute to sociological understandings of self-management and risk while demonstrating the limits of viewing self-management as an individualised endeavour of changing behaviour.
Self-management is recommended by policy and clinical guidelines as a way to contend with the gro... more Self-management is recommended by policy and clinical guidelines as a way to contend with the growing incidence of osteoarthritis-related joint pain in an ageing population. Sociologists assert that self-management is as much about lay strategies for dealing with the biographically disruptive qualities of chronic illness as opposed to solely complying with medical regimens. The original concept of biographical disruption coined by Bury is not uncontested. Chronic joint pain has been characterised as featuring 'co-existing meanings' of significance and consequence. The former conferring no biographical disruption due to osteoarthritis being associated with 'normal ageing' and the latter causing biographical disruption due to the corporeal limitations joint pain imparts, which, in turn, can influence whether, why and how self-management is undertaken. This article reports findings from repeat interviews and a diary study completed by 22 participants with chronic knee pain. We explore the co-existing but temporally divergent 'meanings as significance' associated with knee pain. Participants describe the onset and current experience of the pain in terms of biographical normality (retrospective or contemporaneous meanings). Future meanings as significance are mediated by cultural beliefs about ageing and current physical consequences of the condition, and also have a distinct character of their own. Knee pain is associated with the possibility of disability and harbours a distinct risk; potential disruption to everyday social relationships, notably relating to care and dependency. In turn, future meanings of significance influence the preventative self-management strategies that people utilise. We argue for a more cogent theoretical understanding of temporal dimensions of biographical disruption, biographical work and subsequent self-management by utilising and extending the thought of Bury, and Corbin and Strauss. Doing so helps to understand patient self-management strategies and facilitates self-management support in clinical settings for osteoarthritis and potentially other chronic conditions.
The impact of pain and chronic illness on the family has been documented, but there is little inf... more The impact of pain and chronic illness on the family has been documented, but there is little information about living with chronic widespread pain in the context of the family. This article uses data from a qualitative study of the experience of living with chronic widespread pain to examine the experience and meaning of support for people with this condition in the context of their families. It focuses on the varying, dynamic and reciprocal nature of practical and emotional support in the family. Family members may provide support but are also receivers of support from the person with chronic widespread pain. The factors mediating the provision of this support are also explored, including the nature of the pain and the needs of the person with pain, and the roles, responsibilities and characteristics of other family members.
Multi-morbidity is receiving considerable attention in public policy, health and social care. Fro... more Multi-morbidity is receiving considerable attention in public policy, health and social care. From the perspective of the individual, multi-morbidity is a more complex experience than solely having a clinical diagnosis. In this article, we will argue that understanding multi-morbidity can be facilitated by considering the relationship between adversity (in this case multi-morbidity), resilience and social connectedness within a life course framework. This provides an approach that can capture the dynamics of social relationships, social connectedness and the fluctuations in the experience of multi-morbidity. We draw on a qualitative study of 17 people who have multiple conditions, but consider themselves as being able to maintain a sense of identity and self over time and in the face of adversity. From their accounts, a more varied picture emerges of living with multi-morbidity. This then depicts a more realistic representation of how each person shapes their multi-morbidity and resilient responses within their own social context, which can help to formulate more effective ways of supporting them.
Collaboration between health and social services is important when assessing the needs of clients... more Collaboration between health and social services is important when assessing the needs of clients and evaluating outcomes resulting from planned interventions. This article looks at the reality of interprofessional collaboration in developing services for people with physical disabilities. It focuses on the use of formal measurement tools such as the Functional Limitations Profile and discusses the way in which such tools can be used. The possible mismatch between clients' own perception of need and that of professionals is highlighted. Furthermore, the use of qualitative research complements understanding, because it allows for contextual understanding of the FLP scores.
Background: The number of people living with more than one chronic illness (multimorbidity) is in... more Background: The number of people living with more than one chronic illness (multimorbidity) is increasing. People living with multimorbidity are likely to be active participants in the management and decision making processes around their own conditions. However, emerging evidence suggests that individual patient priorities and decision making processes in relation to multimorbidity are complex. Patients' social networks—family, friends, and work colleagues—have been identified as an important factor in shaping the ways that patients live with and manage chronic illness. Social networks are understood as a source of social resources and are increasingly recognized in emerging models of healthcare. This study addresses the patient experience of living with both OA and cardiovascular disease (CVD); in particular, it addresses the role of patients' social networks in relation to various aspects of illness self-management. Methods: The study sample was drawn from an on-going cohort study into OA/CVD comorbidity. Study participants have a diagnosis of both OA and CVD (all participants have further additional conditions). In-depth qualitative interviews were conducted at multiple time points. Interviews focused upon issues relating to living with and managing concurrent conditions, and the role that participants' social networks played in shaping these experiences. Results: Social networks were found to be a key factor in patients' experiences of multimorbidity. Social networks were an important source of social support—including health information, practical, and emotional support—and played a key role in how patients understand their illnesses. Patients' social networks also influenced the ways in which patients prioritized and managed concurrent conditions, for example, in relation to how they managed polypharmacy and navigated services. However, there were also examples where social networks had a negative affect on how multimorbidity was experienced, for example, some participants spoke of disagreements with their significant others in relation to how their illnesses should be managed. Conclusions: The patient experience of living with and managing multimorbidity is often highly complex. Patients with multimorbidity routinely draw upon their social network as a source of support and advice. It may be useful to consider issues around the management of multimorbidity in the context of patients' inter-personal social relationships.
This article draws on findings from a study of eight people (aged 40-60) with chronic widespread ... more This article draws on findings from a study of eight people (aged 40-60) with chronic widespread pain and their families, living in the West Midlands area of the UK. Data were generated through a series of in-depth interviews, based on a lifegrid and on participants' diaries. We explore the experience of chronic widespread pain in the context of sufferers' biographies, examining how people attempt to account for and give meaning to their pain onset and development and how they remake identity following disruption to their lives. We use these accounts to consider whether chronic widespread pain is biographically disruptive, or whether any of the alternative notions better describe the experience. We conclude that the consideration of context in biographical disruption should extend to lifestage and perceived life expectancy.
Objective: To describe older people's everyday experience and context of living with knee pai... more Objective: To describe older people's everyday experience and context of living with knee pain and disability, and to explore the potential of open-format diaries in accessing these experiences. Methods: This was a diary study, embedded in a larger mixed-method study. Ten people who participated in a qualitative interview study volunteered to keep an open-format diary over a period of 1 week. Results: Diaries provided current and historical details about people's lives and their health. The diaries set these experiences within the context of daily life, and combined description with reflection. Themes covered included: causes of pain, symptoms and treatments, consultations, and co-morbidity. Discussion: Open-format diaries allow insights into the complex and contextual experience of pain and disability, and because of the contemporaneous detail, can be helpful to clinicians' holistic understanding of the impact of knee pain on people's quality of life. This method provides descriptive material that complements survey and qualitative interview data.
Self-managing chronic musculoskeletal pain is predominantly framed within a discourse of modifyin... more Self-managing chronic musculoskeletal pain is predominantly framed within a discourse of modifying behaviour, or lifestyle risk factors such as diet, weight loss and exercise by policymakers, researcher and clinicians. Little research has been conducted which explores how 'risk' is understood or encountered by those with joint pain and how it may relate to self-management. Drawing from serial interviews and a diary study with 22 participants, the findings demonstrate that people with chronic pain engage in a process of assessing and adapting to hazardous or pain conferring situations in relation to daily activities. 'Risks' are embedded within a dialectic between corporeal experience and the design features of everyday social environments. Self-management, in this context, is not necessarily solely related to following clinical advice, rather it includes dealing with 'risks' of pain, hazards relating to bodily limitations and the environment, and ensuring the ability to continue with valued activities. Findings contribute to sociological understandings of self-management and risk while demonstrating the limits of viewing self-management as an individualised endeavour of changing behaviour.
Uploads
Papers by Bie Ong