Controlled, Constrained, or Flexible? How Self-Management Goals Are Shaped By Patient-Provider Interactions.

A person-centered approach to goal-setting, involving collaboration between patients and health professionals, is advocated in policy to support self-management. However, this is difficult to achieve in practice, reducing the potential effectiveness of self-management support. Drawing on observations of consultations between patients and health professionals, we examined how goal-setting is shaped in patient-provider interactions. Analysis revealed three distinct interactional styles. In controlled interactions, health professionals determine patients' goals based on biomedical reference points and present these goals as something patients should do. In constrained interactions, patients are invited to present goals, yet health professionals' language and questions orientate goals toward biomedical issues. In flexible interactions, patients and professionals both contribute to goal-setting, as health professionals use less directive language, create openings, and allow patients to decide on their goals. Findings suggest that interactional style of health professionals could be the focus of interventions when aiming to increase the effectiveness of goal-setting.

An invisible patient: Healthcare professionals' perspectives on caring for adolescents and young adults who have a sibling with cancer.

The impact of a young person's cancer diagnosis extends to siblings, yet support services to address siblings' needs are limited. This study explores healthcare professionals' (HCPs') perspectives on engaging and supporting adolescent and young adult (AYA, 12-25 years) siblings of young cancer patients in hospital settings. Semi-structured interviews with nine HCPs explored participants' views on models of care, engagement and assessment of siblings, available services, barriers to care, and future directions. Participants understood the impact of cancer and need to support AYA siblings, but were unclear how these responsibilities fit in with existing models of care and clinical roles. Siblings' absence from hospitals complicated processes of engagement, assessment and provision of care, challenging some participants to engage siblings outside the clinical context. In the absence of direct contact, HCPs largely relied on patients and parents to report or refer siblings for care. Service and resource limitations further restricted the provision of support to siblings. Despite HCPs' recognition of the need to support siblings, their "invisibility," lack of standardised assessment and service constraints complicate the provision of care in hospital settings. Integrating hospital-based care with community services may better facilitate the engagement and support of AYA siblings.

Making the unbearable, bearable: Qualitative examination of patient, family and nurses' perspectives on the role and value of specialist metastatic breast care nurses.

PURPOSE: To examine the role and value of specialist metastatic breast care nurses in Australia from the perspective of metastatic breast care nurses, patients, and family members. Metastatic breast cancer (mBC) is treatable yet incurable, with distinct supportive care needs, yet many of these needs are unmet. METHOD: Diverse sampling methods were used to recruit 10 people with mBC, 5 family members and 10 metastatic breast care nurses. Semi-structured interviews were conducted online or by telephone during August-December 2020, and analysed thematically. RESULTS: The role of the specialist nurse was strongly valued within and across participant groups, with close alignment regarding what was highly valued. Three themes were identified. First, nurses played a vital role in giving voice and visibility to patients with mBC in a healthcare system in which they often felt invisible. Second, nurses combined their clinical and psychosocial skills with a sense of authentic engagement to create a safe space for those with mBC to discuss their feelings, experiences, and topics, especially those that were unlikely to be discussed in their other social and clinical interactions. Finally, nurses supported patients in living as well as possible while managing symptoms, ongoing treatment, and attendant psychosocial impacts of an incurable and life-limiting condition. CONCLUSIONS: This study underscores the central importance of metastatic breast care nurses in enhancing patient well-being, bridging gaps in care, and offering much-needed support. By addressing patients' emotional, clinical, and social needs, these specialist nurses contribute to a more holistic and compassionate approach to managing mBC.

Changing impact of COVID-19 on life expectancy 2019-2023 and its decomposition: Findings from 27 countries.

Background: The World Health Organization declared COVID-19 no longer a global health emergency on 5th May 2023; however, the impact of COVID-19 on life expectancy throughout the pandemic period is not clear. This study aimed to quantify and decompose the changes in life expectancy during 2019-2023 and corresponding age and gender disparities in 27 countries. Methods: Data were sourced from the Human Mortality Database, the World Population Prospects 2022 and the United Kingdom's Office for National Statistics. Life expectancy was estimated using the abridged life table method, while differentials of life expectancies were decomposed using the age-decomposition algorithm. Results: There was an overall reduction in life expectancy at age 5 among the 27 countries in 2020. Life expectancy rebounded in Western, Northern and Southern Europe in 2021 but further decreased in the United States, Chile and Eastern Europe in the same year. In 2022 and after, lost life expectancy years in the United States, Chile and Eastern Europe were slowly regained; however, as of 7th May 2023, life expectancy in 22 of the 27 countries had not fully recovered to its pre-pandemic level. The reduced life expectancy in 2020 was mainly driven by reduced life expectancy at age 65+, while that in subsequent years was mainly driven by reduced life expectancy at age 45-74. Women experienced a lower reduction in life expectancy at most ages but a greater reduction at age 85+. Conclusions: The pandemic has caused substantial short-term mortality variations during 2019-2023 in the 27 countries studied. Although most of the 27 countries experienced increased life expectancy after 2022, life expectancy in 22 countries still has not entirely regained its pre-pandemic level by May 2023. Threats of COVID-19 are more prominent for older adults and men, but special attention is needed for women aged 85+ years.

Nativity in the healthy migrant effect: Evidence from Australia.

Migrant health constitutes an important public health issue; however, variations in the 'healthy migrant effect' among migrants of different nativity are not adequately understood. To fill this gap, this study examines the life expectancy (LE) and healthy life expectancy (HLE) of the Australian-born population and eight major migrant groups in Australia for 2006, 2011 and 2016. The results show that compared with the Australian-born population, the foreign-born population overall had a higher LE and HLE but a lower HLE/LE ratio. Considerable variations in migrant health status according to nativity were also observed. Specifically, migrants from South Africa, Britain and Germany exhibited a similar or higher LE, HLE and HLE/LE ratio, while those from China, India, Italy and Greece had a higher LE but a significantly lower HLE/LE ratio compared with the Australian-born population. Lebanese migrants were the only group who experienced an unchanging LE and a declining HLE from 2006 to 2016. These notable differences in migrants' health outcomes with respect to nativity may be explained by the sociocultural differences between the origin and host countries and the different extents of migration selectivity of different migrant groups. Targeted countermeasures such as improving the quality of life of migrants from culturally diverse backgrounds or with negative migration experiences are suggested.

The effect of the COVID-19 pandemic on life expectancy in 27 countries.

The expected year-on-year intrinsic mortality variations/changes are largely overlooked in the existing research when estimating the effect of the COVID-19 pandemic on mortality patterns. To fill this gap, this study provides a new assessment of the loss of life expectancy caused by COVID-19 in 27 countries considering both the actual and the expected changes in life expectancy between 2019 and 2020. Life expectancy in 2020 and the expected life expectancy in the absence of COVID-19 are estimated using the Lee-Carter model and data primarily from the Human Mortality Database. The results show that life expectancy in 21 of the 27 countries was expected to increase in 2020 had COVID-19 not occurred. By considering the expected mortality changes between 2019 and 2020, the study shows that, on average, the loss of life expectancy among the 27 countries in 2020 amounted to 1.33 year (95% CI 1.29-1.37) at age 15 and 0.91 years (95% CI 0.88-0.94) at age 65. Our results suggest that if the year-on-year intrinsic variations/changes in mortality were considered, the effects of COVID-19 on mortality are more profound than previously understood. This is particularly prominent for countries experiencing greater life expectancy increase in recent years.

Between knowing and doing person-centredness: A qualitative examination of health professionals' perceptions of roles in self-management support.

Self-management is a contemporary model of chronic condition care that places expectations on, and roles for, both patients and health professionals. Health professionals are expected to form partnerships with their patients, and patients are expected to be active participants in their own care. In these new roles, control and responsibility for self-management are shared between people with chronic conditions and their health professionals. We still have limited knowledge about how these new roles are enacted in self-management support. In this article, we examine how health professionals perceive the roles of patients and professionals in chronic condition self-management, drawing on Bourdieu's concepts of field, doxa and capital. In this qualitative study, 32 in-depth interviews were conducted with 11 health professionals in Sydney, Australia. Data were analysed thematically. Three themes were derived. First, there was incongruence between how participants characterised and enacted their roles. Second, participants compartmentalised clinical and non-clinical aspects of self-management support. Finally, the roles of health professionals entwined with emotions and judgements of patienthood revealed that the provision of self-management support was linked to a fit between individuals' cultural health capital and the expectations governing the field. We argue that 'taken for granted' assumptions about self-management and self-management support must be challenged to mitigate negative social representations and unrealistic expectations placed on patients and health professionals, particularly those patients with less capital, who are more marginalised within clinical interactions.

Goals for living with a chronic condition: The relevance of temporalities, dispositions, and resources.

INTRODUCTION: Premised on the idea that setting goals motivates action and allocation of resources toward a desired future state, goal-setting has become a key component of self-management support. The notions that underpin goal-setting situate self-management firmly within the control and responsibility of individuals. Yet, we argue that goals are not solely individual pursuits to be achieved if individuals have the right knowledge and enough motivation; rather, they are social products, influenced by individual and collective subjectivities, which are structured over time. OBJECTIVE: Drawing primarily on Bourdieu's concept of habitus, along with capital and field, we examine how goals are constructed in self-management support encounters. METHOD: Seventeen patient-professional dyads comprising 15 patients and 11 health professionals were interviewed on up to three occasions. In total 64 semi-structured interviews were conducted between 2015 and 2017 in Sydney, Australia. RESULTS: Goals were manifested through patient participants' expressions of goal agency (as self-owned wants and opportunities; responsibilities to self and others; or necessities); goal-oriented dispositions (determined; responsible; or powerless); temporal orientations (past, present or future); and access to resources to support self-management. These characteristics were grouped into three typologies: 'Goals as opportunities'; 'From goals to responsibilities'; and 'Necessities when living precariously'. CONCLUSIONS: The way goals were constructed was structured over time by present experiences superimposed on past experiences and access to resources. These findings help broaden understandings of the tensions between patient and professionals' goals for living well with chronic conditions and draw attention to the need for structural change to support people to live well with their chronic conditions.

Patients' and healthcare professionals' perceptions of self-management support interactions: Systematic review and qualitative synthesis.

Objective To review studies examining the experience of self-management support in patient-provider interactions and the shaping of goals through interactions. Methods We undertook a systematic review and thematic synthesis of the qualitative literature. We searched six databases (2004-2015) for published studies on the provision of self-management support in one-to-one, face-to-face, patient-provider interactions for obesity, type 2 diabetes mellitus and chronic obstructive pulmonary disease, with 14 articles meeting inclusion criteria. Results Themes identified from studies were (1) dominance of a traditional model of care, encompassing the provision of generic information, exclusion of the psychosocial and temporal nature of interactions and (2) a context of individual responsibility and accountability, encompassing self-management as patients' responsibility and adherence, accountability and the attribution of blame. Interactions were constrained by consultation times, patient self-blame and guilt, desire for autonomy and beliefs about what constitutes 'effective' self-management. Discussion Encounters were oriented towards a traditional model of care delivery and this limited opportunity for collaboration. These findings suggest that healthcare professionals remain in a position of authority, limiting opportunities for control to be shared with patients and shared understandings of social context to be developed.