Making it Work: Everyday Life and Healthcare with Multiple Chronic Illnesses in Denmark.

A growing concern in clinical literature with the "treatment burden" of living with multimorbidity raises questions about how we can study and produce knowledge on the impact of health care. In this article, we draw on ethnographic material from fieldwork among people with multimorbidity in Denmark and recent theorization on "values" in health care, to show how an ongoing "trying out" and ways of "just getting on with it" are enacted in illness trajectories marked by multimorbidity. Our findings point to the importance of attending to the subject positions that particular healthcare relations and encounters make possible.

Parental illness work across the attention deficit hyperactivity disorder diagnostic journey.

The process of referral, assessment, and diagnosis of attention deficit hyperactivity disorder (ADHD) within the UK is often protracted. Given that parents are frequently the instigators of the diagnostic process, understanding the experience of parents is important. Drawing on findings from a longitudinal study, this article explores how the parental experience of the ADHD diagnostic journey includes three significant and distinct forms of 'illness work'. Twenty-one semi-structured serial interviews were conducted over a 2-year period with seven parents of children on the ADHD diagnostic journey in North East England. We present three significant forms of parental illness work: (1) The 'diagnostic quest', parental work recognising and fighting for their children's needs and selfhood, seeking diagnosis and engaging with systems, (2) 'self-biographical illness work', the personal parental biographical response to the diagnostic journey and (3) 'child biographical illness work and recontextualizing the child', parental biographical adjustment and recontextualisation of their children. We advance Rasmussen et al.'s (2021) model by demonstrating its usefulness in understanding how parents with a personal ADHD diagnosis experience biographical disruption or cohesion in response to their children's diagnosis. That a child's diagnosis leads parents with ADHD to experience a self-biographical cohesive or disruptive response is a unique and significant finding.

"I wouldn't survive it, as simple as that": Syndemic vulnerability among people living with chronic non-communicable disease during the COVID-19 pandemic.

The co-occurrence of COVID-19, non-communicable diseases and socioeconomic disadvantage has been identified as creating a syndemic: a state of synergistic epidemics, occurring when co-occurring health conditions interact with social conditions to amplify the burden of disease. In this study, we use the concept of illness management work to explore the impact of the COVID-19 pandemic on the lives of people living with, often multiple, chronic health conditions in a range of social circumstances. In-depth interviews were conducted between May and July 2020 with 29 participants living in a city in North East England. Qualitative data provide unique insights for those seeking to better understand the consequences for human life and wellbeing of the interacting social, physical and psychological factors that create syndemic risks in people's lives. Among this group of people at increased vulnerability to harm from COVID-19, we find that the pandemic public health response increased the work required for condition management. Mental distress was amplified by fear of infection and by the requirements of social isolation and distancing that removed participants' usual sources of support. Social conditions, such as poor housing, low incomes and the requirement to earn a living, further amplified the work of managing everyday life and risked worsening existing mental ill health. As evidenced by the experiences reported here, the era of pandemics will require a renewed focus on the connection between health and social justice if stubborn, and worsening health and social inequalities are to be addressed or, at the very least, not increased.

Divided We Stand: The Collaborative Work of Patients and Providers in an Enigmatic Chronic Disease.

In chronic conditions, patients and providers need support in understanding and managing illness over time. Focusing on endometriosis, an enigmatic chronic condition, we conducted interviews with specialists and focus groups with patients to elicit their work in care specifically pertaining to dealing with an enigmatic disease, both independently and in partnership, and how technology could support these efforts. We found that the work to care for the illness, including reflecting on the illness experience and planning for care, is significantly compounded by the complex nature of the disease: enigmatic condition means uncertainty and frustration in care and management; the multi-factorial and systemic features of endometriosis without any guidance to interpret them overwhelm patients and providers; the different temporal resolutions of this chronic condition confuse both patients and provides; and patients and providers negotiate medical knowledge and expertise in an attempt to align their perspectives. We note how this added complexity demands that patients and providers work together to find common ground and align perspectives, and propose three design opportunities (considerations to construct a holistic picture of the patient, design features to reflect and make sense of the illness, and opportunities and mechanisms to correct misalignments and plan for care) and implications to support patients and providers in their care work. Specifically, the enigmatic nature of endometriosis necessitates complementary approaches from human-centered computing and artificial intelligence, and thus opens a number of future research avenues.

Chronic Living in a Communicable World.

By April 2020, COVID-19 lockdowns had restricted the movements of over half the world's population. As health authorities advise people living with chronic conditions to self-isolate because they are at particular risk of serious complications and death, the epidemiological split between communicable and noncommunicable disease is tenuous. We argue that much more is at stake for people living with (multiple) medical conditions than being "at risk" of infection of coronavirus. We emphasize the need to attend to the long-term effects of COVID-19, but also the importance of the continued care of people living with other lifelong medical conditions.

Long-Term Condition Self-Management Support in Online Communities: A Meta-Synthesis of Qualitative Papers.

BACKGROUND: Recent years have seen an exponential increase in people with long-term conditions using the Internet for information and support. Prior research has examined support for long-term condition self-management through the provision of illness, everyday, and emotional work in the context of traditional offline communities. However, less is known about how communities hosted in digital spaces contribute through the creation of social ties and the mobilization of an online illness "workforce." OBJECTIVE: The aim was to understand the negotiation of long-term condition illness work in patient online communities and how such work may assist the self-management of long-term conditions in daily life. METHODS: A systematic search of qualitative papers was undertaken using various online databases for articles published since 2004. A total of 21 papers met the inclusion criteria of using qualitative methods and examined the use of peer-led online communities for those with a long-term condition. A qualitative meta-synthesis was undertaken and the review followed a line of argument synthesis. RESULTS: The main themes identified in relation to the negotiation of self-management support were (1) redressing offline experiential information and knowledge deficits, (2) the influence of modeling and learning behaviors from others on self-management, (3) engagement that validates illness and negates offline frustrations, (4) tie formation and community building, (5) narrative expression and cathartic release, and (6) dissociative anonymity and invisibility. These translated into a line of argument synthesis in which four network mechanisms for self-management support in patient online communities were identified. These were (1) collective knowledge and identification through lived experience; (2) support, information, and engagement through readily accessible gifting relationships; (3) sociability that extends beyond illness; and (4) online disinhibition as a facilitator in the negotiation of self-management support. CONCLUSIONS: Social ties forged in online spaces provide the basis for performing relevant self-management work that can improve an individual's illness experience, tackling aspects of self-management that are particularly difficult to meet offline. Membership in online groups can provide those living with a long-term condition with ready access to a self-management support illness workforce and illness and emotional support. The substitutability of offline illness work may be particularly important to those whose access to support offline is either limited or absent. Furthermore, such resources require little negotiation online because information and support is seemingly gifted to the community by its members.

The influence of personal communities on the self-management of medication taking: A wider exploration of medicine work.

OBJECTIVES: There is a lack of focus on the broader social context, networks and influences on medicine-taking as part of illness work. This work adopts a social network approach and seeks to explicate the nature of medicine-taking work that people with multiple long-term conditions (LTCs) and their social network members (SNMs) do in attempting to take their medications on a daily basis, the division of labour amongst these members and when and why SNMs become involved in that work. METHODS: Semi-structured interviews were conducted with 20 people who had multiple LTCs. Medication networks were constructed and the division of labour in relation to medication-work was explored. RESULTS: Four types of medication-work emerged: medication articulation, surveillance, emotional and informational. Involvement of SNMs in medication-work was selective, performed primarily by family members, within the home. Involvement reflected network composition and/or an individual's conceptualisation/presentation of self. DISCUSSION: Our findings support and extend the conceptualisation of routine medicine-taking as a type of work. Furthermore, we illustrate the involvement of SNMs in aspects of medicine-work. Health professionals should explore and support the role of SNMs in medicine-taking where possible. Future research should explore the implications of network types and compositions on medicine-taking and associated work.

Creature comforts: personal communities, pets and the work of managing a long-term condition.

OBJECTIVES: To explore in the context of peoples' personal social networks, the contribution that pets make to 'the work' associated with the management of long-term conditions. METHOD: Mixed methods survey with nested parallel qualitative study; 300 participants were drawn from diabetes and chronic heart disease registers of General Practices across Greater Manchester in the North West of England. Notions of 'work' were used to describe the illness and everyday activities associated with chronic illness. RESULTS: Nineteen percent of participants identified at least one pet within their network. Pets contributed mostly to managing emotions (emotional work), to enhancing a sense of self identity (biographical work) and to a lesser extent practical tasks (everyday work). There were indicators that pets mediated relationships for people living with a long-term condition through very weak ties with others in domestic and community settings. CONCLUSION: The findings suggest that pets have unique qualities and are not simply substitutes for human relationships in long-term condition management. The study has potential implications for furthering a social contextual analysis of chronic illness, the understanding of relationships, and the meaning and the role of companion animals in long-term condition management.