Self-management by older people living with cancer and multi-morbidity: a qualitative study.

PURPOSE: Over half of individuals diagnosed with cancer are aged over 70 years, and more than 75% of those with cancer report at least one other medical condition. Having multiple conditions alongside cancer in old age may lower functional status, greater likelihood of treatment complications and less favourable prognoses. This qualitative study explored how older people with long-term chronic conditions manage their health and meet their health-related goals after they have completed treatment for cancer. METHODS: One-to-one face-to-face qualitative interviews were conducted with 8 older people and 2 informal caregivers based in the UK. Older adults were eligible to participate if they were over 70 and had completed primary cancer treatment with curative intent and had at least one other chronic health condition. A semi-structured interview schedule developed a priori based on Shippee's cumulative complexity model was used. We aimed to explore experiences that could influence self-management, utilisation of healthcare services and health outcomes. A framework analysis was used to describe and interpret the data. RESULTS: Four overarching themes were identified in the analysis. These themes related to factors that influenced the everyday health-related workload and capacity of the participants. These factors included their health, resources, and opportunities, as well their motivation and sense of perceived control over their lives. CONCLUSIONS: Fragmented healthcare systems and relationships with healthcare professionals also influenced the participants' self-management of their health. Our findings highlight the interaction between an individuals' needs, capacity, treatment burden, and the services and resources available to them. These findings support calls to promote person-centred care to better support older adults to manage their health.

'I'll put up with things for a long time before I need to call anybody': Face work, the Total Institution and the perpetuation of care inequalities.

Failures in fundamental care (e.g. nutrition or pain-relief) for hospitalised patients can have serious consequences, including avoidable deaths. Policy rhetoric of 'shared decision-making' fails to consider how structural constraints and power dynamics limit patient agency in nursing staff-patient interactions. Goffman's concepts of face work, the presentation of self and the Total Institution shaped our analysis of interview and focus group data from hospital patients. Patients avoided threatening 'good' patient and staff face by only requesting missed care when staff face was convincing as 'caring' and 'available' ('engaged'). Patients did not request care from 'distracted' staff ('caring' but not 'available'), whilst patient requests were ignored in Total Institution-like 'dismissive' interactions. This meant patients experienced missed care with both 'distracted' and 'dismissive' staff. Patients with higher support needs were less able to carry out their own missed care to protect staff face, so experienced more serious care omissions. These findings show that many elements of the Total Institution survive in modern healthcare settings despite attempts to support individualised care. Unless nursing staff can maintain face as 'engaged' (despite organisational constraints that can reduce their capacity to do so) patient participation in care decisions will remain at the level of rhetoric.

Self-management in older people living with cancer and multi-morbidity: A systematic review and synthesis of qualitative studies.

OBJECTIVE: Many older people with cancer live with multimorbidity. Little is understood about the cumulative impact of old age, cancer and multimorbidity on self-management. This qualitative systematic review and synthesis aimed to identify what influences self-management from the perspective of older adults living with cancer and multimorbidity. METHODS: Six databases were systematically searched for primary qualitative research reporting older adults' experiences of living with cancer and multimorbidity (eg, Medline, Embase, and CINAHL). A thematic synthesis was guided by Shippee's model of cumulative complexity. Text labelled as results in the included papers was treated as data. RESULTS: Twenty-eight studies were included. While the included studies varied in their focus, our analysis highlighted a number of important themes consistent across the studies. Health conditions with the greatest negative impact on independent living assumed the greatest importance, sometimes meaning their cancer was a low priority. Self-management practices seen as likely to interfere with quality of life were deprioritized unless viewed as necessary to maintain independence. When burden outweighed capacity, people were reluctant to ask for help from others in their social network. The contribution of formal healthcare services to supporting self-management was relatively peripheral. CONCLUSIONS: Old age and multimorbidity together may complicate self-management after cancer, threatening health and well-being, creating burden and diminishing capacity. Older adults prioritized self-management practices they considered most likely to enable them to continue to live independently. The protocol was registered with Prospero (CRD42018107272).

Making health care responsive to the needs of older people.

This commentary highlights the importance of health system responsiveness to older people living with complex health needs. Age-related changes and associated morbidity can present barriers to identifying an individual's health needs, expectations, values and preferences, and so sufficient time, skill and resource is required to inform the development of a tailored plan for each individual. A focus on responsiveness moves thinking beyond the responsibilities of the individual clinician in the single encounter, and allows us to identify elements of the wider system that may constrain how well the clinician is able to respond. Setting the goal of responsive health care requires us to assess the suitability of wider health system features and processes for meeting the diverse needs of individual people throughout their journey, and the extent to which the system can adapt dynamically as needs change. Standardised approaches to care prescribed across organisations (such as time-based targets or routinised approaches to inpatient nursing care) are likely to result in low responsiveness as individual complexity grows, disadvantaging patients with needs that do not fit the prescribed approach. Responsiveness is high when individual practitioners and clinical teams have the resources, decentralised authority, flexibility and autonomy to provide the care required. Building a more responsive health system requires a greater understanding of how these conditions can be achieved.

Being research-savvy in acute care settings.

We are good at reinventing the wheel in older people's nursing, where we often find ourselves struggling with the same practice issues regardless of care setting. Frequently, the starting point is to develop a local solution.

Inter-rater reliability of the QuIS as an assessment of the quality of staff-inpatient interactions.

BACKGROUND: Recent studies of the quality of in-hospital care have used the Quality of Interaction Schedule (QuIS) to rate interactions observed between staff and inpatients in a variety of ward conditions. The QuIS was developed and evaluated in nursing and residential care. We set out to develop methodology for summarising information from inter-rater reliability studies of the QuIS in the acute hospital setting. METHODS: Staff-inpatient interactions were rated by trained staff observing care delivered during two-hour observation periods. Anticipating the possibility of the quality of care varying depending on ward conditions, we selected wards and times of day to reflect the variety of daytime care delivered to patients. We estimated inter-rater reliability using weighted kappa, κ w , combined over observation periods to produce an overall, summary estimate, [Formula: see text]. Weighting schemes putting different emphasis on the severity of misclassification between QuIS categories were compared, as were different methods of combining observation period specific estimates. RESULTS: Estimated [Formula: see text] did not vary greatly depending on the weighting scheme employed, but we found simple averaging of estimates across observation periods to produce a higher value of inter-rater reliability due to over-weighting observation periods with fewest interactions. CONCLUSIONS: We recommend that researchers evaluating the inter-rater reliability of the QuIS by observing staff-inpatient interactions during observation periods representing the variety of ward conditions in which care takes place, should summarise inter-rater reliability by κ w , weighted according to our scheme A4. Observation period specific estimates should be combined into an overall, single summary statistic [Formula: see text], using a random effects approach, with [Formula: see text], to be interpreted as the mean of the distribution of κ w across the variety of ward conditions. We draw attention to issues in the analysis and interpretation of inter-rater reliability studies incorporating distinct phases of data collection that may generalise more widely.

New workforce roles in health care: exploring the longer-term journey of organisational innovations.

PURPOSE: This paper seeks to present findings from a longitudinal action research study aimed at exploring one such innovation. Little is known about the micro-level impact of health service innovations over time. DESIGN/METHODOLOGY/APPROACH: The paper shows that action research is a participatory approach ideally suited to monitoring the process and outcomes of change. Over 20 months, an action researcher studied the work of four interprofessional care co-ordinators (IPCCs), whose role was intended to speed patient through-put within a London teaching hospital general medical directorate. The action researcher kept regular participant observation field notes and supplemented these data with a profile of IPCC patients (n = 407), in-depth interviews (n = 37) and focus groups (n = 16) with staff. Throughout the study, findings were regularly fed back to participants to inform practice developments. FINDINGS: The findings in this paper show that, in spite of the original intention for this role to provide clerical support to the multidisciplinary team, over time the role shifted beyond its implementation into practice to take on more complex work from registered nurses. This raised actual and potential governance issues that were not attended to by service managers. A complex and turbulent context disrupted managers' and practitioners' abilities to reflect on and respond to these longer-term role shifts. ORIGINALITY/VALUE: This paper argues that the complex nature of the innovation and the setting in which it operated account for the role shift and the lack of attention to issues of governance. Current innovation literature suggests that implementation into routine practice represents the end-point of an innovation's journey. These findings suggest that certain innovations may in fact continue to shift in nature even after this "end-point". The conclusions drawn are likely to be of global interest to those interested in complex health service innovations.

Policy on new workforce roles: a discussion paper.

Addressing workforce issues has increasingly become a central feature of the organisation and management of public sector services internationally. The introduction of new work roles to public services is one approach advocated in response to recruitment and retention difficulties with professional staff and to increasingly complex services. This paper aims to critically examine UK's new roles policy in a health care context and explore its wider relevance by drawing on findings from an action research Ph.D. study aimed at exploring one such new role. This deliberately flexible role was held by individuals without a recognised qualification but study findings illustrate that, over the time, the role came to include the complex discharge planning work with patients previously carried out by registered nurses (RNs). The analysis presented highlights shortcomings in current new roles policy including the unacknowledged influence of competing policy goals; the erroneous assumption that defining who does what is clear-cut in practice; the lack of longer-term review of new roles; and the incompatibility between role flexibility and needs for role clarity. Policy makers, managers and practitioners are urged to acknowledge the subtleties and complexities of new work roles in the public sector highlighted by this study.