This study investigates informal complaining in healthcare settings, that is, the kind of patient complaints that are expressed verbally to professionals in care encounters. In healthcare policies and the complaints literature, informal complaints receive little attention and are rarely studied as a distinct phenomenon. Building on the sociology of complaint, research on the good and bad patient, and scholarship on boundary work, we analyse focus groups with care professionals and interviews with patients in Sweden to study how these actors make sense of patients' informal complaining practices. We highlight the discursive work that patients and care professionals do around the boundaries of ‘whining’ – our analytic term to capture informal complaining practices that are demarcated as to-be-avoided. We argue that there are three dimensions to this work: they negotiate the validity and temporality of complaining and do so in relation to an identity of the ‘complainer’. Our analysis highlights the complexities of these negotiations and shows how informal complaining oftentimes is framed as a risky practice by patients and a problem by care professionals. These normative complexities get muddled further through their contrast to healthcare political discourses which emphasise complaints as valuable knowledge and patients as active subjects. Our study suggests that it is necessary for future research, complaint policies, and person-centred care to engage with the difficult and at times unwanted parts of informal complaining practices.

Dominant ideas and structures at the core of modern medicine create a kind of “ideal patient”. Processes of standardisation, normalisation, and patient activation suit certain patients but create problems for some bodies, needs, and ways of being.

This series of art works is a commentary on how medicine creates its own “difficult patients”. It can also serve as an opportunity for critical reflection on how care professionals and patients, together, use their knowledge to enable better care and on the continued time, space, and trust they need to do so.

The allocation of resources is a crucial part of political decision-making in healthcare, but explicit priorities are rarely set when resources are distributed. Two areas that have received some attention in research about legitimacy and priority-setting decisions in healthcare are the role of technical expert agencies as mediating institutions and the role of elected politicians. This paper investigates a political priority-setting advisory committee within a regional authority in Sweden. The aim is to explore how a political body can serve as a mediating institution for priority-setting in healthcare by disentangling the arrangements of its work in terms of what role it performs in the organisation and what it should do. The findings illustrate that promoting the notion of explicit priority-setting and the political aspects inherent in priority-setting in political healthcare management can contribute to consolidating political governance and leadership. There is, however, a complex tension between stability and conflicting values which has implications for the role of politicians as citizens' democratic representatives. This paper enhances our understanding of the role of mediating institutions and political properties of healthcare priority-setting, as well as our understanding of political and democratic healthcare governance in local self-government.

Young-onset dementia (YOD) affects individuals under 65 years of age, often leading to loss of employment and independence. Families provide increasing levels of care to family members with YOD, resulting in changes to their daily lives, including their occupational pursuits. This review examines evidence of the occupational implications for family members who provide care to a family with YOD to identify: (i) the influence and impact caregiving tasks and responsibilities have on employment, volunteering, and education, and (ii) caregiver, and caregiving situation factors associated with changes in employment, volunteering, and education. A scoping review was performed using eight electronic databases. Included articles were narratively synthesized using a thematic analysis. Sixteen studies met the inclusion criteria and were included for review. The over-arching (main) theme of 'decision-making' was identified, with family members required to make choices about their own occupational goals and roles to be able to provide care to family living with YOD. The outcomes of these decisions are dynamic and changeable across the caregiving trajectory. Three caregiving factors influence decision-making: (1) Implications of Combining Caregiving and Occupations, (2) Altered Identity (3) Strategies to Support Caregivers of Individuals Living with YOD. A fourth theme was also identified 'Guidance for Researchers To Support Caregivers'. There is a scarce body of literature examining the influence caregiving has on occupational outcomes for the YOD caregiver population. Much of this work is descriptive and lacks focus on the implications, particularly long-term impacts. This review provides a foundational guide for future research and practices to support YOD family caregivers to obtain and sustain occupations.

BackgroundThe use of policies in medical treatment reimbursement decisions, in which only future patients are affected, prompts a moral dilemma: is there an ethical difference between withdrawing and withholding treatment?DesignThrough a preregistered behavioral experiment involving 1,067 participants, we tested variations in public attitudes concerning withdrawing and withholding treatments at both the bedside and policy levels.ResultsIn line with our first hypothesis, participants were more supportive of rationing decisions presented as withholding treatments compared with withdrawing treatments. Contrary to our second prestated hypothesis, participants were more supportive of decisions to withdraw treatment made at the bedside level compared with similar decisions made at the policy level.ImplicationsOur findings provide behavioral insights that help explain the common use of policies affecting only future patients in medical reimbursement decisions, despite normative concerns of such policies. In addition, our results may have implications for communication strategies when making decisions regarding treatment reimbursement.

Denna rapport har tagits fram på uppdrag av Resurspoolen – Frivilliga uppdrag i Linköping. Uppdraget bestod i att dokumentera volontärernas erfarenhet av vilken betydelse äldre medborgare, som organiserar sig i Resurspoolens verksamhet, kan ha för att förebygga ofrivillig ensamhet och social isolering bland äldre personer. Uppdraget hade också en framåtsyftande ansats gällande hur Resurspoolen kan komma att utvecklas utifrån volontärernas perspektiv.

Civilsamhällets betydelse inom välfärdssamhället är högaktuell i nationell politik där frivilligorganisationer lyfts fram som en central aktör för att hantera välfärdssystemets utmaningar och ansträngda situation. Medborgare som organiserar sig gemensamt antas fylla en allt större roll i gränsytan mot det offentliga stödsystemet. Samtidigt har ofrivillig ensamhet bland äldre personer lyfts fram av staten som särskilt allvarlig, varför statsbidrag har riktats till kommuner och det civila samhället för att förebygga och bryta ofrivillig ensamhet.

Rapporten har särskilt fokus på de äldre frivilliga volontärerna som engagerar sig. En viktig komponent är deras arbete, intresse och fortsatta engagemang för att skapa en kontinuitet i genomförandet av olika insatser och i den ömsesidiga relationen – vid aktiviteter mellan äldre, inom organisationen och mellan volontärorganisationen och andra aktörer. Rapporten belyser också arbetet med att skapa aktiviteter och mötesplatser för äldre personer, varav många lever i social ensamhet.

Rapporten kan således sättas in i ett större sammanhang genom att bidra med kunskap om hur en volontärorganisation – Resurspoolen – har en mångsidig funktion för det lokala samhället i att uppmärksamma och ge socialt stöd, sällskap, skapa gemenskap och social hållbarhet bland Linköpings medborgare.

This report has been written on behalf of Resurspoolen - Frivilliga uppdrag i Linköping. The aim was to document the volunteers' experience of the importance of older citizens, who organise themselves in the Resurspoolen’s activities, in preventing loneliness and social isolation among older people. The project also had a forward-looking approach regarding how the work by Resurspoolen can be further developed and improved.

The importance of civil society in the welfare society has been raised in Swedish national politics, where voluntary organisations have been highlighted as a key player in managing the challenged situation that the welfare system is facing. Citizens who organise themselves are assumed to play an increasingly important role at the interface with the public support system. At the same time, preventing loneliness among older people has been highlighted as a prioritised area by the state where municipalities and civil society have been pointed out as key actors to prevent loneliness. 

The report focuses on the older volunteers who get involved, get organised with the effort to give “an extra flavour to older people’s life”. An important component is their work, interest, and continued commitment to create activities targeting older people, many of whom live in social isolation. and to create collaboration, between older people within the organisation, and between the volunteer organisation and other actors in the local society. 

The report can also be placed in a broader context as it contributes with knowledge about how a volunteer organisation – Resurspoolen – has a versatile function for the local community, providing social support, social inclusion and shaping social sustainability among Linköping’s citizens.

Thinking critically about the role of complaint in patient care, Jelmer Brüggemann, Lisa Guntram and Ann-Charlotte Nedlund explore the ’difficult patient’ as a medical humanities concept.

In Sweden, efforts to govern end-of-life care through policies have been ongoing since the 1970s. The aim of this study is to analyse how policy narratives on palliative care in Sweden have been formulated and have changed over time since the 1970s up to 2018. We have analysed 65 different policy-documents. After having analysed the empirical material, three policy episodes were identified. In Episode 1, focus was on the need for norms, standards and a psychological end-of-life care with the main goal of solving the alleged deficiencies within end-of-life care in hospital settings. Episode 2 was characterised by an emphasis on prioritising end-of-life care and dying at home, and on the fact that the hospice care philosophy should serve as inspiration. In Episode 3, the need for a palliative care philosophy that transcended all palliative care and the importance of systematic follow-ups and indicators was endorsed. Furthermore, human value and freedom of choice were emphasised. In conclusion, the increase of policy-documents produced by the welfare-state illustrate that death and dying have become matters of public concern and responsibility. Furthermore, significant shifts in policy narratives display how notions of good palliative care change, which in turn may affect both the practice and the content of care at the end of life.

Medicine is organized around specific kinds of patients. In the cross-section of overarching biomedical narratives, international and national regulations and guidelines, and local practices, a particular kind of “ideal” patient is produced. The ideal patient embraces the larger biomedical paradigm, fits standardized diagnostic or treatment protocols, and behaves in expected and respectful ways. At the same time, its downside is created. Modern medicine’s narrow pathways create all sorts of “difficult patients.” Rather than focusing on the “difficult patient” as a psychological or relational struggle for individual care professionals or patients – a common focus in medical literature and debate – this chapter approaches the “difficult patient” as a phenomenon inherent in the ways in which medicine is organized. It shows how the difficult patient can provide an analytic lens through which individuals can see health care norms and logics in play. In particular, the chapter discusses how the difficult patient comes into being in “misfits” between dominant logics in medicine and individual patient lives and needs.