Self-management of patients with advanced cancer: A systematic review of experiences and attitudes.

BACKGROUND: Patients with advanced cancer are increasingly expected to self-manage. Thus far, this topic has received little systematic attention. AIM: To summarise studies describing self-management strategies of patients with advanced cancer and associated experiences and personal characteristics. Also, to summarise attitudes of relatives and healthcare professionals towards patient self-management. DESIGN: A systematic review including non-experimental quantitative and qualitative studies. Data were analysed using critical interpretive synthesis. Included studies were appraised on methodological quality and quality of reporting. DATA SOURCES: MEDLINE, Embase, Cochrane Central, PsycINFO, CINAHL, Web of Science and Google Scholar (until 11 June 2019). RESULTS: Of 1742 identified articles, 31 moderate-quality articles describing 8 quantitative and 23 qualitative studies were included. Patients with advanced cancer used self-management strategies in seven domains: medicine and pharmacology, lifestyle, mental health, social support, knowledge and information, navigation and coordination and medical decision-making (29 articles). Strategies were highly individual, sometimes ambivalent and dependent on social interactions. Older patients and patients with more depressive symptoms and lower levels of physical functioning, education and self-efficacy might have more difficulties with certain self-management strategies (six articles). Healthcare professionals perceived self-management as desirable and achievable if based on sufficient skills and knowledge and solid patient-professional partnerships (three articles). CONCLUSION: Self-management of patients with advanced cancer is highly personal and multifaceted. Strategies may be substitutional, additional or even conflicting compared to care provided by healthcare professionals. Self-management support can benefit from an individualised approach embedded in solid partnerships with relatives and healthcare professionals.

Views of professionals and volunteers in palliative care on patient-centred care: a Q-methodology study in the Netherlands.

BACKGROUND: Patients with palliative care needs, require support with their physical needs, but also with their emotional, spiritual and social needs. Patient-Centred Care (PCC) may help organizations to support these patients according to their needs and so improve the quality of care. PCC has been shown to consist of eight dimensions, including for instance access to care and continuity of care, but these eight dimensions may not be equally important in all care settings and to all patients. Furthermore, the views of those involved in care provision may affect the choices they make concerning care and support to patients. Therefore, insight into how professionals and volunteers involved in palliative care delivery view PCC is important for understanding and improving the quality of care in the palliative sector. METHODS: This study was conducted in the palliative care setting (hospices and hospitals) in the Netherlands. Views on palliative care were investigated using the Q-methodology. Participants were asked to rank 35 statements that represented the eight dimensions of PCC in palliative care settings, and to explain their ranking during a follow-up interview. Ranking data were analysed using by-person factor analysis. Interview materials were used to help interpret the resulting factors. RESULTS: The analysis revealed two distinct viewpoints on PCC in palliative care: 'The patient in the driver seat', particularly emphasizing the importance of patient autonomy during the last phase of life, and 'The patient in the passenger seat', focussed on the value of coordination between professionals, volunteers and patients. CONCLUSIONS: The most distinguishing aspect between views on PCC in palliative care concerned control; a preference for the patient in the driver's seat versus shared decision-making by a team consisting of patient, professionals and volunteers. Different types of care and support may be most adequate to satisfy the different needs and preferences of patients with either of these views.

Evaluating an integrated primary care approach to improve well-being among frail community-living older people: A theory-guided study protocol.

BACKGROUND: A major challenge in primary healthcare is the substantial increase in the proportion of frail community-dwelling older persons with long-term conditions and multiple complex needs. Consequently, a fundamental transformation of current models of primary care by means of implementing proactive integrated care is necessary. Therefore, an understanding of the effects of integrated primary care approaches and underlying mechanisms is essential. This article presents the design of a theory-based evaluation of an integrated primary care approach to improve well-being among frail community-living older adults, which is called "Finding and Follow-up of Frail older persons" (FFF). First, we present a theoretical model to facilitate a sound theory-guided evaluation of integrated primary care approaches for frail community-dwelling older people. The model incorporates interrelated elements of integrated primary care approaches (e.g. proactive case finding and self-management support). Efforts to improve primary care should integrate these promising components to assure productive patient-professional interactions and to improve well-being. Moreover, cognitive and behavioral components of healthcare professionals and patients are assumed to be important. Second, we present the design of the study to evaluate the FFF approach which consists of the following key components: (1) proactive case finding, (2) case management, (3) medication review, (4) self-management support, and (5) working in multidisciplinary care teams. METHODS: The longitudinal evaluation study has a matched quasi-experimental design with one pretest and one posttest (12 month follow-up) and is conducted in the Netherlands between 2014 and 2017. Both quantitative and qualitative methods are used to evaluate effectiveness, processes, and cost-effectiveness. In total, 250 frail older persons (75 years and older) of 11 GP (general practitioner) practices that implemented the FFF approach are compared with 250 frail older patients of 4 GP practices providing care as usual. In addition, data are collected from healthcare professionals. Outcome measures are based on our theoretical model. DISCUSSION: The proposed evaluation study will reveal insight into the (cost)effectiveness and underlying mechanisms of the proactive integrated primary care approach FFF. A major strength of the study is the comprehensive evaluation based on a theoretical framework. The quasi-experimental design presents some challenges.

Situational awareness, relational coordination and integrated care delivery to hospitalized elderly in the Netherlands: a comparison between hospitals.

BACKGROUND: It is known that interprofessional collaboration is crucial for integrated care delivery, yet we are still unclear about the underlying mechanisms explaining effectiveness of integrated care delivery to older patients. In addition, we lack research comparing integrated care delivery between hospitals. Therefore, this study aims to (i) provide insight into the underlying components 'relational coordination' and 'situational awareness' of integrated care delivery and the role of team and organizational context in integrated care delivery; and (ii) compare situational awareness, relational coordination, and integrated care delivery of different hospitals in the Netherlands. METHODS: This cross-sectional study took place in 2012 among professionals from three different hospitals involved in the delivery of care to older patients. A total of 215 professionals filled in the questionnaire (42% response rate).Descriptive statistics and paired-sample t-tests were used to investigate the level of situational awareness, relational coordination, and integrated care delivery in the three different hospitals. Correlation and multilevel analyses were used to investigate the relationship between background characteristics, team context, organizational context, situational awareness, relational coordination and integrated care delivery. RESULTS: No differences in background characteristics, team context, organizational context, situational awareness, relational coordination and integrated care delivery were found among the three hospitals. Correlational analysis revealed that situational awareness (r = 0.30; p < 0.01), relational coordination (r = 0.17; p < 0.05), team climate (r = 0.29; p < 0.01), formal internal communication (r = 0.46; p < 0.01), and informal internal communication (r = 0.36; p < 0.01) were positively associated with integrated care delivery. Stepwise multilevel analyses showed that formal internal communication (p < 0.001) and situational awareness (p < 0.01) were associated with integrated care delivery. Team climate was not significantly associated with integrated care delivery when situational awareness and relational coordination were included in the equation. Thus situational awareness acted as mediator between team climate and integrated care delivery among professionals delivering care to older hospitalized patients. CONCLUSIONS: The results of this study show the importance of formal internal communication and situational awareness for quality of care delivery to hospitalized older patients.