Communication, understanding and engagement of patients with pancreatic cancer at time of diagnosis.

BACKGROUND: Objectives: To investigate communication clarity and understanding at the time of pancreatic adenocarcinoma (PDAC) diagnosis and whether they can influence patient engagement and compliance. METHODS: Consecutive PDAC patients were enrolled at the time of diagnosis after obtaining informed consent in a single-center study. The patients completed a validated scale (PHE-s®), and the understanding rate was assessed using standardized tools. Patient compliance was evaluated, and the correlation between the PHE-s®, understanding, and compliance was calculated. RESULTS: Thirty patients were enrolled (15 female) with a mean age 64.4, 13 were metastatic. The mean visit time was 31 min, being longer if visiting doctor was an oncologist (p = 0.002). The engagement level was high in 70% of the patients, and all but one were compliant. The analysis of doctor-patient interactions showed a median of 121 conversational turns for doctors, 75 for patients, and 20 for caregivers (p < 0.0001), and the median percentage of speaking time was 77% for doctors, 13% for patients, and 2% for caregivers (p < 0.0001). Female caregivers spent more time speaking than did male caregivers (median 11.6% vs. 1.3%; p = 0.06). There were 290 instances of problematic understanding, most of which occurred during the taking of patients' personal medical history for doctors, while for patients and caregivers, these occurred mainly during the discussion of diagnosis/treatment (p < 0.0001). In a multivariable analysis, only origin from central or southern Italy was associated with high engagement (p = 0.0087). CONCLUSION: In this first attempt to measure clarity of communication and engagement in patients with PDAC, typical features of conversation and problematic understanding emerged, which deserves further investigation.

Cardiac rehabilitation engagement and associated factors among heart failure patients: a cross-sectional study.

BACKGROUND: Chronic Heart Failure (CHF) still affects millions of people worldwide despite great advances in therapeutic approaches in the cardiovascular field. Cardiac rehabilitation (CR) is known to improve disease-related symptoms, quality of life and clinical outcomes, yet implementation is suboptimal, a frequently low engagement in rehabilitation programs has been found globally. OBJECTIVE: To quantify diverse CR-engaged processes and elucidate associated factors of the various levels of CR engagement in CHF patients. METHODS: Discharged patients admitted from cardiology departments between May 2022 to July 2022 were enrolled by mobile phone text messaging, CHF patients from same department between August 2022 to December 2022 were enrolled by face-to-face. Individuals who met the inclusion criteria filled the questionnaires, including the generalized anxiety disorders scale, patient health questionnaire, cardiac rehabilitation inventory, patient activation measure, Tampa scale for kinesiophobia heart, social frailty, Patient Health Engagement Scale (PHE-s®). We obtained sociodemographic characteristics and clinical data from medical records. Chi-square tests and multivariable logistic regression analyses were performed to examine the factors associated with CR engagement phases. RESULTS: A total of 684 patients were included in the study. 52.49% patients were in the Adhesion phase. At the multivariate level, compared with the blackout phase process anxiety, monthly income (RMB yuan) equal to or more than 5,000 were the most important factor impacting CHF patients CR engagement. Compared with the Blackout phase, regular exercise or not, severe depression, previous cardiac-related hospitalizations 1 or 2 times, Age influenced patient CR engagement in the Arousal phase. Besides, compared with the Blackout phase, outcome anxiety and activation level were independent factors in the Eudaimonic Project phase. CONCLUSION: This study characterized CR engagement, and explored demographic, medical, and psychological factors-with the most important being process anxiety, monthly income, patient activation, severe depression, and previous cardiac-related hospitalizations. The associated factors of CR engagement were not identical among different phases. Our findings suggested that factors could potentially be targeted in clinical practice to identify low CR engagement patients, and strategies implemented to strengthen or overcome these associations to address low CR engagement in CHF patients.

The role of free-from symbols on consumer perceptions of healthiness, quality and intention to buy baked food products.

Little is known about the impact of "free-from" symbols on people's consumption choices - particularly for controversial ingredients such as palm oil. We investigated how "free-from" symbols influence consumers' perceptions of food products and whether the absence of an ingredient, whether real or fabricated, is seen as a sign of improved healthiness or quality. We conducted an experiment with a sample of 1215 adults representing the Italian population, showing them two products - crackers and sweet snacks - each with four different symbols. We created the "free-from CO2" and "free-from polyunsaturated fats" symbols, while "palm oil-free" and blank symbols were used for comparison. "free-from" symbols influence consumers' perceptions of the food as being of better quality and healthiness, regardless of the ingredient removed. This symbol also influenced purchasing intentions. Consumers' perceptions of the product were influenced by the "free-from" wording, rather than the type of ingredient or product presented.

Public views on the Covid-19 immunity certificate: A scoping review.

INTRODUCTION: Already in its first implementation, the introduction of the Covid-19 immunity certificate has generated some debate among the public. This debate might be a hindrance to the effective realization of this policy. This study aimed to systematically review published research evaluating public feeling of the Covid-19 immunity certificate policy measure and to find which factors might influence its acceptance. METHODS: We followed the scoping review methods manual by the Joanna Briggs Institute. We included studies with no time limits that presented novel data, and no exclusions have been made based on study design. We excluded articles that presented just expert opinions. RESULTS: We found and reviewed 17 articles. The included studies were conducted in two main countries (the United Kingdom and Switzerland), with the rest from Israel, Italy, Spain, Germany, Australia, Taiwan and China. Both qualitative and quantitative studies were included, and nonrepresentative samples were mostly used to explore the public feeling about the Covid-19 immunity certification. The included studies showed that public views on immunity certification are quite contradictory and influenced by age, gender, ethnicity, political orientation and attitudes towards Covid-19 vaccination. The topic more often addressed by the included studies was the public's views on the positive and negative implications of the Covid-19 immunity certificate in terms of ethical, legal and behavioural consequences of this measure. CONCLUSION: The varying acceptance rates are notable and may partly be linked to differences in demographics, Covid-19 concerns and ideological beliefs, as seen in other health-related tracking policies. Moreover, dominant factors behind the (un)success of this policy are complex and entangled with the cultural and political dimensions rather than being just technical. For this reason, it is important to expand psychosocial research to better understand the concerns behind health certifications and allow planning of culturally based and ethically sound suitable strategies. This would be very relevant to increasing public approval and compliance with this public health measure. PATIENT OR PUBLIC CONTRIBUTION: This does not apply to our work as it was a review paper.

"Food is more than just a source of nutrients": A qualitative phenomenological study on Food Involvement.

The role of food in people's life has changed dramatically in recent years. In particular, it is becoming more symbolic and linked to subjective values. For this reason, recent scientific research has delved into the construct of Food Involvement. However, to the best of our knowledge, there are no empirical studies aimed at exploring this construct deepening the symbolic value assumed by it. Accordingly, the current study aims to qualitatively explore the personal meanings that consumers attribute to Food Involvement and to detect the psychological domains that characterize this lived experience. The study included a purposive sample of adults selected according to three different prototypical profiles until reaching data saturation: mothers, cooks or athletes, all with medium or high levels of Food Involvement. Fourteen in-depth phenomenological interviews were conducted and analyzed according to the principles of Interpretative Phenomenological Analysis (IPA). Results showed that Food Involvement is characterized by a deep relationship between the consumer and food that allows satisfying one's ambitious transformative project that involves the self, the other or both actors. This symbolic role played by Food Involvement was recognized by both those with medium or high involvement. However, the orientations in one's transformative process of mothers, athletes and cooks is different. In particular, the transformative project of mothers is oriented towards the other, that of cooks towards the self and athletes' project towards the self and others. This study gives a scientific contribution to the literature about Food Involvement to create effective measurement scales that assess the symbolic role that Food Involvement has in people's lives.

Effects of the COVID-19 Emergency and National Lockdown on Italian Citizens' Economic Concerns, Government Trust, and Health Engagement: Evidence From a Two-Wave Panel Study.

Policy Points Preventive measures such as the national lockdown in Italy have been effective in slowing the spread of COVID-19. However, they also had psychological and economic impacts on people's lives, which should not be neglected as they may reduce citizens' trust and compliance with future health mandates. Engaging citizens in their own health management and in the collaboration with health care professionals and authorities via the adoption of a collaborative approach to health policy development is fundamental to fostering such measures' effectiveness. Psychosocial analysis of citizens' concerns and emotional reactions to preventive policies is important in order to plan personalized health communication campaigns. CONTEXT: Because of the COVID-19 pandemic, between February 23 and March 8, 2020, some areas of Italy were declared "red zones," with citizens asked to stay home and avoid unnecessary interpersonal contacts. Such measures were then extended, between March 10 and May 4, 2020, to the whole country. However, compliance with such behaviors had an important impact on citizens' personal, psychological, and economic well-being. This could result in reduced trust in authorities and lowered compliance. Keeping citizens engaged in their own health and in preventive behaviors is thus a key strategy for the success of such measures. This paper presents the results from a study conducted in Italy to monitor levels of people's health engagement, sentiment, trust in authorities, and perception of risk at two different time points. METHODS: Two independent samples (n = 968 and n = 1,004), weighted to be representative of the adult Italian population, were recruited in two waves corresponding to crucial moments of the Italian COVID-19 epidemic: between February 28 and March 4 (beginning of "phase 1," after the first regional lockdowns), and between May 12 and May 18 (beginning of "phase 2," after the national lockdown was partially dismissed). Respondents were asked to complete an online survey with a series of both validated measures and ad hoc items. A series of t-tests, general linear models, and contingency tables were carried out to assess if and how our measures changed over time in different social groups. FINDINGS: Although sense of self and social responsibility increased between the two waves, and trust toward authorities remained substantially the same, trust in science, consumer sentiment, and health engagement decreased. Our results showed that while both the level of general concern for the emergency and the perceived risk of infection increased between the two waves, in the second wave our participants reported being more concerned for the economic consequences of the pandemic than the health risk. CONCLUSIONS: The potentially disruptive psychological impact of lockdown may hamper citizens' compliance with, and hence the effectiveness of, behavioral preventive measures. This suggests that preventive measures should be accompanied by collaborative educational plans aimed at promoting people's health engagement by making citizens feel they are partners in the health preventive endeavor and involved in the development of health policies.

Does patient engagement affect IBD patients' health-related quality of life? Findings from a cross-sectional study among people with inflammatory bowel diseases.

BACKGROUND: Patients diagnosed with inflammatory bowel disease (IBD) are required to deal with the unpredictability of this clinical condition, which is associated with poorer health-related quality of life (HRQoL) compared to other clinical conditions. Patient engagement is currently demonstrated to relate with chronic patients' HRQoL, but few studies have been conducted among this population. METHODS: A cross-sectional study was conducted among 1176 IBD patients. Data were collected on participants' HRQoL (SIBD-Q) and patient engagement (PHE-s®). Regression analysis was used to examine the effects of patient engagement on HRQoL. RESULTS: About the half of the sample (47%) reported a low patient engagement level. 30% of the sample reported a low level of HRQoL. Psycho-emotional functioning resulted to be the aspect of HRQoL most impacted in the 37% of the sample. The regression model showed that PHE-s® is significantly related to the SIBD-Q total score (B = .585; p < .001; R squared = .343) and to the subscales' scores-systemic symptoms (B = .572; p < .001; R squared = .327), bowel symptoms (B = .482; p < .001; R squared = .232), social (B = .485; p < .001; R squared = .234) and psycho-emotional (B = .607; p < .001; R squared = .369) functioning. CONCLUSIONS: Patients who are engaged in their IBD care pathway are more likely to report higher level of HRQoL, thus offering clues to potential therapeutic approaches to ameliorating IBD patients' wellbeing. As this is a modifiable factor, screening for patient  health engagement levels, coupled with appropriate interventions, could improve care, and ultimately improve HRQoL outcomes among IBD patients.

COVID-19 disease and nutritional choices: How will the pandemic reconfigure our food psychology and habits? A case study of the Italian population.

BACKGROUND AND AIMS: In Italy, the spread of the novel coronavirus (SARS-Cov-2) required lifestyle changes that have affected food choices and people's health condition. We explore people's perception of the role of food consumption as a preventive measure and how it reconfigures consumption habits. METHOD AND RESULTS: We conducted an online survey of a representative sample of 1004 Italian citizens. Around 40% of the population perceive that strengthening the immune defences through nutrition is not important to reduce the risk of coronavirus disease 2019 (COVID-19) infection. People with lower levels of perceived importance are slightly younger and have a less healthy lifestyle. They are less worried about the emergency. During the last months, they have bought less food supplements and also intend to decrease their purchase in the next 6 months. CONCLUSION: In COVID-19 pandemic, scholars underline the importance of having a strong immune system. However, the Italians who attribute less importance to food that helps the immune system seem to differ negatively in their psychological attitude towards the emergency and food consumption. Today, Italians are asked to engage in preventive food practices to protect against possible chronic diseases; exploring their perceptions is important to orient them towards this change.

Impact of the COVID-19 pandemic on psychological well-being of students in an Italian university: a web-based cross-sectional survey.

BACKGROUND: Italy was the first European country to implement a national lockdown because of the COVID-19 pandemic. Worldwide, this pandemic had a huge impact on the mental health of people in many countries causing similar reaction in terms of emotions and concerns at the population level. Our study investigated the impact of the COVID-19 pandemic on psychological well-being in a cohort of Italian university students. METHODS: We conducted a cross-sectional survey in the period immediately after the first lockdown through the administration of a questionnaire on the personal websites of students attending their undergraduate courses at the Università Cattolica del Sacro Cuore. We used the Patient-Health-Engagement-Scale, Self-Rating-Anxiety-Scale, and Self-Rating-Depression-Scale to assess engagement, anxiety symptoms, and depression symptoms of our sample. RESULTS: The sample size was 501 subjects, of which 35.33% were classified as anxious and 72.93% as depressed. Over 90% of respondents had good understanding of the preventive measures despite over 70% suffered from the impossibility of physically seeing friends and partners. Around 55% of students would have been willing to contribute much more to face the pandemic. An increase in the occurrences of anxiety was associated with being female, being student of the Rome campus, suffering from the impossibility of attending university, being distant from colleagues, and being unable of physically seeing one's partner. Performing physical activity reduced this likelihood. CONCLUSION: University students are at risk of psychological distress in the case of traumatic events. The evolution of the pandemic is uncertain and may have long-term effects on mental health. Therefore, it is crucial to study the most effective interventions to identify vulnerable subgroups and to plan for acute and long-term psychological services to control and reduce the burden of psychological problems.

Factors associated with emotional exhaustion in healthcare professionals involved in the COVID-19 pandemic: an application of the job demands-resources model.

PURPOSE: The purpose of the present cross-sectional study is to investigate the role of perceived COVID-19-related organizational demands and threats in predicting emotional exhaustion, and the role of organizational support in reducing the negative influence of perceived COVID-19 work-related stressors on burnout. Moreover, the present study aims to add to the understanding of the role of personal resources in the Job Demands-Resources model (JD-R) by examining whether personal resources-such as the professionals' orientation towards patient engagement-may also strengthen the impact of job resources and mitigate the impact of job demands. METHODS: This cross-sectional study involved 532 healthcare professionals working during the COVID-19 pandemic in Italy. It adopted the Job-Demands-Resource Model to study the determinants of professional's burnout. An integrative model describing how increasing job demands experienced by this specific population are related to burnout and in particular to emotional exhaustion symptoms was developed. RESULTS: The results of the logistic regression models provided strong support for the proposed model, as both Job Demands and Resources are significant predictors (OR = 2.359 and 0.563 respectively, with p < 0.001). Moreover, healthcare professionals' orientation towards patient engagement appears as a significant moderator of this relationship, as it reduces Demands' effect (OR = 1.188) and increases Resources' effect (OR = 0.501). CONCLUSIONS: These findings integrate previous findings on the JD-R Model and suggest the relevance of personal resources and of relational factors in affecting professionals' experience of burnout.

Place4Carers: a multi-method participatory study to co-design, piloting, and transferring a novel psycho-social service for engaging family caregivers in remote rural settings.

BACKGROUND: Family caregivers are key actors in the ageing society. They are mediators between practitioners and patients and usually provide also essential daily services for the elders. However, till now, few services have been deployed to help caregivers in their care tasks as in improving their mental health which can experience sever burden due to caregiving duties. The purpose of the study is to implement a community-based participatory research project to co-design an innovative organizational model of social services for family caregivers of elderly health consumers living in remote rural areas in Italy. METHODS: This is a community-based participatory research project in the remote area of Vallecamonica involving four main phases. These included a quantitative analysis of caregiver needs, a scoping review on existing services for caregivers, co-design workshops with local stakeholders and caregivers to create a novel service the piloting and a first implementation of the service and the assessment of project transferability to other contexts. RESULTS: As the hours dedicated to elder care increases, both objective and developmental caregiver's burden significantly increases. Conversely, higher levels of engagement were associated with lower physical and emotional burden, and caregiver engagement was positively correlated with their perceived self-efficacy in managing disruptive patient behaviours. Based on these preliminary results, four co-design workshops with caregivers were conducted and led to the definition of the SOS caregivers service, built on four pillars structured upon the previous need analysis: a citizens' management board, training courses, peer-to-peer meetings, and project and service information. We found that co-design is an effective means of creating new services for family caregivers, whose experiential knowledge proved to be a key resource for the project team in delivering and managing services. Less positively, the transferability analysis indicated that local municipalities remain reluctant to acknowledge caregivers' pivotal role. CONCLUSIONS: A dedicated support service for caregivers can ameliorate caregiving conditions and engagement levels. The service has resulted a successful co-productive initiative for a psycho-social intervention for family caregivers. For the future, we suggest that family caregiver should be considered an active partner in the process of designing novel psycho-social services and not just as recipients to enhance a better aging-in-place process.

Mistrust in biomedical research and vaccine hesitancy: the forefront challenge in the battle against COVID-19 in Italy.

Researchers have been working quickly and collaboratively for the development of vaccines against the COVID-19 virus. The effort of the scientific community in searching a vaccine for COVID-19 may be hampered by a diffused vaccine hesitancy. Two waves of data collection on representative samples of the Italian population (during the "first" and "second" phase of the Italian Covid-19 mitigation strategy) were conducted to understand citizens' perceptions and behaviors about preventive behaviors willingness to vaccine for COVID-19. Our study shows that willingness to COVID-19 vaccine is correlated to trust in research and in vaccines, which decreased between phase 1 and phase 2 of the Italian pandemic. According to the results of our study, the proportion of citizens that seem to be intentioned to get the Covid-19 vaccine is probably too small to effectively stop the spreading of the disease. This requires to foster a climate of respectful mutual trust between science and society, where scientific knowledge is not only preached but also cultivated and sustained thanks to the emphatic understanding of citizens worries, needs of reassurance and health expectations.

'Vaccine hesitancy' among university students in Italy during the COVID-19 pandemic.

The debate around vaccines has been in the spotlight over the last few years in Europe, both within the scientific community and the general public debate. In this regard, the case of the Italian vaccination debate is particularly worrying given that Italy has been one of the European countries with the highest number of measles cases in the recent past. According to this scenario, we conducted a cross-sectional study on a convenience sample of Italian university students aimed at: (1) exploring their attitudes towards a future vaccine to prevent COVID-19 and; (2) evaluating the impact of the university curricula (healthcare vs. non-healthcare curricula) on the intention to vaccinate. Descriptive analysis on the 735 students that answered to the question on the intention to vaccinate showed that 633 (86.1%) students reported that they would choose to have a vaccination for the COVID-19 coronavirus; on the other side, 102 (13.9%) students reported that they would not or be not sure to vaccine (low intention to vaccinate). This means that in our sample more than one student out of 10 shows low intention to vaccinate (vaccine hesitancy). Furthermore, when running analysis comparing healthcare students versus non-healthcare students we found no significant differences in responses' percentage distribution (p = .097). Understanding the student's perspective about the future COVID-19 vaccine and supporting their health engagement and consciousness may be useful in planning adequate response and multidisciplinary educational strategies-including the psychological perspective on vaccine hesitancy underlying factors - in the post-pandemic period.

The Caregiving Health Engagement Scale (CHE-s): development and initial validation of a new questionnaire for measuring family caregiver engagement in healthcare.

BACKGROUND: This study was aimed to preliminary validate a cross-disease psychometric measure to assess the psycho-social experience of family caregiver engagement in healthcare (Caregiving Health Engagement Scale, CHE-s), which refers to the caregiver's psychological attitude to be an active, skilled and motivated player in the care process of their loved ones. METHOD: The study consisted of a mixed methods, multi-stage research. First, a preliminary qualitative stage was aimed at investigating - in the caregivers' perspective - the engagement process in providing care to a ill relative (stage 1). The second stage of the research was aimed at developing a psychometric scale to assess this concept (i.e. the Caregiving Health Engagement Scale - CHE-s) and to preliminary test its psychometric properties (stage 2). RESULTS: Overall, 230 caregivers (32 in stage 1, and 198 in stage 2) participated to the study. The first qualitative stage, conducted by qualitative interviews on 32 family caregivers, highlighted four main experiential positions of caregiver engagement (namely, denial, hyper-activation, drawing, and balance), showing that "full engagement" occurs when caregivers become able to reach balance between their caring tasks and their broad life goals. In the second quantitative stage, we used the qualitative evidences emerged from stage one as a basis for developing the items of the Caregiving Health Engagement scale (CHE-s). We preliminary tested its psychometric properties through a cross-sectional study on 198 caregivers, which demonstrated CHE-s to be a reliable measure to capture the dynamic nature of caregiver engagement. The CATPCA results, together with the ordinal alpha of 0.88, suggests a mono-dimensional latent structure and a very good internal consistency and CFA showed adequate goodness of fit indices. (CFI = 0.96, RMR = 0.03, RMSEA = 0.05). CONCLUSIONS: Health care systems that prioritize person-led care may benefit from using the Caregiving Health Engagement Model and the CHE scale (CHE-s) to assess the engagement level of family caregivers in order to better tailor the supportive and educational intervention addressing them.

Exploring the early-stage implementation of a patient engagement support intervention in an integrated-care context-A qualitative study of a participatory process.

AIMS AND OBJECTIVES: To explore: (a) the usual patient education in different care services of an integrated-care organisation, (b) the healthcare professionals' experiences with adding a patient engagement support intervention called PHEinAction in the patient education practice and (c) the co-designed activities to assist the implementation. BACKGROUND: Including individual support for engaging patients in care into patient education practice is a key effort of integrated-care organisations. However, there is a paucity of studies exploring the implementation of similar efforts. DESIGN AND METHODS: We conducted a qualitative study of a participatory process with 26 healthcare professionals-mostly nurses (n = 22) with leading roles (n = 12)-of different care services in one Italian integrated-care organisation. Data were collected through multiple sources (observations and shadowing; interviews; documents/artefacts; workshops) during the first 6 months of the implementation of PHEinAction. A thematic analysis using a hybrid approach was performed. COREQ guidelines were followed. RESULTS: The existing patient education practice of hospital, ambulatory and community healthcare services of the organisation differed in contents, perceived responsibility and focus area. These key aspects of patient education influenced the healthcare professionals' experiences with the implementation. The experiences informed the activities enacted during the participatory process to assist the implementation, from the co-creation of artefacts to the deployment of peer group supervision. CONCLUSION: The implementation of a brief intervention for patient engagement support required a process of adjustment to the single settings and a continuous support to healthcare professionals. It also required performing complementary activities to assist the implementation and its adoption in new care services. RELEVANCE TO CLINICAL PRACTICE: This qualitative study contributes to the understanding of the pitfalls and strategies that may surround embedding patient engagement support in the educational practice of complex organisations, potentially facilitating the deployment to other care settings.

The complex relationship between diet, quality of life and life expectancy: a narrative review of potential determinants based on data from Italy.

The increasing life expectancy at birth and the improvement of general health observed worldwide over the previous years are likely due to many factors. In this regard, the Organisation for Economic Cooperation and Development (OECD) has highlighted the favourable situation of the Italian population, which is amongst the most privileged in the world. In Italy, the national healthcare system is easily accessible to the whole population without direct costs, and alcohol abuse and cigarette smoke are less widespread compared to neighbouring countries. Moreover, the population still largely follows a dietary pattern characterised by the consumption of foods rich in protective compounds (plant foods and their components, such as fibre, polyphenols and polyunsaturated fatty acids). According to recent data, a significant consumption of these foods, which are key components of the Mediterranean model, is likely to play a more important role compared to the limited consumption of nutrients considered less favourable (essentially, saturated fat and sugar). Based on these assumptions, it can be inferred that the adoption of coercive legislative interventions-which have been introduced in other western countries to improve diet quality-may not be an optimal strategy in a country like Italy. Such an intervention would contend with psychological and social aspects (namely with the belief that participating in decision-making is an essential right) and with broader indications emerging in the research within this field (the effectiveness of a nudge approach as opposed to constraining interventions). These factors may limit any expected positive impact on health within this context. LEVEL OF EVIDENCE: Level V, narrative review.

[Mixed method sequential study on the barriers underpinning a new patient centred care model implementation: the nurses' perspectives]. / Studio con metodo misto sequenziale sulle barriere che ostacolano l'implementazione di un nuovo modello organizzativo patient centred care: la prospettiva infermieristica.

INTRODUCTION: Comparison of the state of nursing in Italy with other countries has shown that theory development in Italian nursing remains quite undeveloped. Theory development in Italian nursing will need to consider local cultural and professional aspects, specific to the Italian practice context, by drawing on known health needs, experiences and nursing approa- ches. The aim of this investigation was to map current knowledge related to nursing in Italy, based on the experiences of patients, families and communities, to provide a basis on which nursing theories could be developed. METHODS: Scoping Review was selected as the best method for this knowledge mapping. Fawcett's nursing metaparadigm was chosen as a broad guide and means by which the litera- ture analysis could be structured. RESULTS: Twenty-two studies were retained and examined in this analysis, including contexts relating to acute care, chronic conditions, as well as emergency and home care services. We defined themes in line with the nursing metaparadigm. Although these definitions are partial, referring only to certain contexts specific to some aspects of nursing care, the original contributions of this investigation provides an important starting point for theory development in Italian nursing, based on the Italian context. CONCLUSION: Strong and credible theory development, that can be readily adapted to practice, requires a rigorous analysis of the points of view of all actors involved in the nursing care process.

Personal history and quality of life in chronic myeloid leukemia patients: a cross-sectional study using narrative medicine and quantitative analysis.

BACKGROUND: Tyrosine kinase inhibitors (TKIs) drastically changed the outcome of patients diagnosed with chronic myeloid leukemia (CML). Several reports indicated the advantage of continue long-term adherence associated with positive outcome. Therefore, it is important to better understand from the patient's standpoint the experience of living with the disease and the related treatment. OBJECTIVES: In this study, quantitative analysis and narrative medicine were combined to get insights on this issue in a population of 257 patients with CML in chronic phase treated with TKIs (43 % men, with a median age of 58 years, 27 % aged 31-50 years), followed for a median time of 5 years. Sixty-one percent of patients enrolled were treated in first line, whereas 37 % were treated in second line. RESULTS: The results showed more positive perceptions and acceptance in males compared to females, without impact of disease on relationships. Level of positive acceptance was more evident in elderly compared to younger patients, with a close connection with median time from diagnosis. Overall, female patients reported negative perceptions and an impact of disease on family daily living. The majority of patients understood the importance of continue adherence to treatment, with 27 % resulting less adherent (60 % for forgetfulness), even if well informed and supported by his/her physician. DISCUSSION AND CONCLUSIONS: Narrative medicine, in association to quantitative analysis, can help physicians to understand needs of their patients in order to improve communication.

Giving patients a starring role in their own care: a bibliometric analysis of the on-going literature debate.

BACKGROUND: Patient-centred care has been advocated as a key component of high-quality patient care, yet its meanings and related actions have been difficult to ascertain. OBJECTIVE: To map the use of different terms related to the process of giving patients a starring role in their own care and clarify the possible boundaries between terms that are often mixed. METHODS: A literature search was conducted using different electronic databases. All records containing the search terms 'patient engagement', 'patient activation', 'patient empowerment', 'patient involvement', 'patient adherence', 'patient compliance' and 'patient participation' were collected. Identified literature was then analysed using the Statistical Package for Social Science (SPSS). The number of yearly publications, most productive countries, cross-concepts articles and various scientific fields dealing with the multidisciplinary concepts were identified. RESULTS: Overall, 58 987 papers were analysed. Correspondence analysis revealed three temporal trends. The first period (2002-2004) focused on compliance and adherence, the second period (2006-2009) focused on the relationship between participation and involvement, and the third one (2010-2013) emphasized empowerment. Patient activation and patient engagement followed the temporal development trend connected to the 'immediate future'. DISCUSSION AND CONCLUSIONS: The bibliometric trend suggests that the role of patient in the health-care system is changing. In the last years, the patient was viewed as a passive receptor of medical prescription. To date, the need to consider patients as active partners of health-care planning and delivery is growing. In particular, the term patient engagement appears promising, not only for its increasing growth of interest in the scholarly debate, but also because it offers a broader and better systemic conceptualization of the patients' role in the fruition of health care. To build a shared vocabulary of terms and concepts related to the active role of patients in the health-care process may be envisaged as the first operative step towards a concrete innovation of health-care organizations and systems.

Engaging patients to recover life projectuality: an Italian cross-disease framework.

PURPOSE: Chronic disease is recognized as having a large impact on patient quality of life (QoL), which can be defined as an individual's satisfaction or happiness with life in domains he or she considers important. Policy makers and clinicians recognize increasingly that patients can safeguard their QoL by making healthy lifestyle choices and being actively engaged in their health care. However, in the emphasis on promoting patient engagement to enhance patients' QoL, there is no consensus regarding the relationship between QOL and patient engagement, resulting in a lack of shared guidelines among clinicians on interventions. Furthermore, no studies have provided an in-depth exploration of the perspective of patients with chronic conditions who are engaged in their health care and their requirements to achieve an improved QoL. Given this theoretical gap, the present study attempted to explore the patient engagement experience and its relationship with patient QoL in the context of the Italian healthcare system and in relation to different chronic diseases. METHODS: In-depth qualitative interviews on a sample of 99 patients with a wide variety of chronic conditions (heart failure, chronic obstructive pulmonary disease, stroke, diabetes, and cancer). RESULTS: Patient engagement in health care can be defined as a context-based and cross-disease process that appears to enable patients to recover their life projectuality, which had been impaired by the onset of chronic disease. Successful patient engagement may also be related to a positive shift in the ways in which patients perceive self and life and experience empowerment to realize their life potential, thus improving quality of life. Patient engagement is a powerful concept capable of reflecting significant psychosocial changes that promote patient QoL along the care process. There appears to be theoretical and empirical justification for a broad definition of QoL. CONCLUSIONS: QoL deeply depends on the patient ability to engage in their care and on the health expectations they have. We propose a model of the relation between patient engagement and patients' trajectories in critical event responses and use it to illustrate a new perspective on QoL. This research showed the heuristic value patient engagement as a is a key concept in the promotion of a patients' experience-sensitive QoL interventions and assessment measures.