Active Role In Decision Research Articles

Patients and informal caregivers in the lead: a qualitative study on the experiences of patients, informal caregivers, and healthcare professionals with involvement in treatment, e-health and self-management programs

BackgroundA significant proportion of patients and informal caregivers favor an active role in decisions concerning their health. Simultaneously, governments aim to shift treatment from a professional care setting to a community setting, in light of an ageing population, a decreasing number of health workers and allocation of scarce resources. This transition of care solicits patients’ and informal caregivers’ ability to self-manage. Therefore, the Maastricht University Medical Centre + has established the Academy for Patients and Informal caregivers. The aim is to proactively and professionally support patients and their informal caregivers to enhance their self-management. For that, the Academy offers activities in three categories: (1) instruction of nursing techniques, (2) training of e-health competencies and (3) the provision of self-management programs. Both patients with an episodic care need, as well as patients and informal caregivers with chronic illness, are eligible to participate in the Academy’s activities. However, little is known about the experience of these interventions from the perspective of patients, informal caregivers and healthcare professionals.MethodsWe conducted semi-structured interviews with 15 patients, 8 informal caregivers and 19 health care professionals who either participated in, referred to or received patients from the Academy. Topics revolved around self-management and the Quadruple aim, covering topics such as patient experiences, healthcare costs, health and well-being of the population and improving work life for health professionals. Data were analyzed using thematic analysis.ResultsPatients and caregivers experienced an increase in the ability to manage health needs independently, leading to increased mental well-being and self-efficacy. They felt recognized as partners in care, although managing illness needs came with its own burdens. Health care professionals indicated that they felt assured of the quality, uniformity and availability of activities due to its central organization, with instruction nurses finding greater meaning in their work. On the level of health care systems, participants in this study mentioned a decrease in use of formal healthcare, whilst enabling a more equitable division of care.ConclusionStakeholders’ experiences with the Academy for Patients and Informal caregivers indicate that participation contributes to development of self-management, whilst also improving working conditions, reducing the appeal to formal care and advancing equity in healthcare. The burden for patients and informal caregivers is to be considered in future developments.

TAVI transcarotídeo: la técnica paso a paso

Introduction and objectivesTranscatheter aortic valve implantation as a treatment for aortic stenosis is positioned as the therapy of choice for a specific population of patients, which is steadily increasing and is no longer limited to patients with prohibitively high surgical risk. This stems from the advancement and refinement of devices, as well as the development of different access routes. Our goal is to share and standardize the transcarotid access technique, which we have implemented and developed since 2019 with very good results. Method and resultsBetween 01/01/2019 and 31/12/2023, 79 transcatheter valves were implanted via the carotid route (21.43% of the total implants in our center), with no intraoperative mortality and less than 1% mortality during the first month of intervention. The incidence of established strokes in these patients is 0%. ConclusionsWe have adopted the transcarotid route as an equally valid alternative to the transaxillary access. Due to recent changes in patient selection criteria, we believe that the cardiovascular surgeon should have an active role in decision-making and implantation of this type of prosthesis, since many patients have low surgical risk and are consequently susceptible to intervention in case of procedure complications.

"Too young to have this kind of diagnosis": A qualitative exploration of younger adults' experiences of colorectal cancer diagnosis.

Colorectal cancer (CRC) incidence is rising among adults under the age of 50 (early- or young-onset CRC). This population is more likely to have advanced-stage disease at diagnosis, suggesting their diagnostic pathway may be prolonged. To better understand factors influencing this pathway, this study explored patients' experiences of decision-making during a diagnosis of young-onset CRC. Semi-structured interviews were conducted with 17 participants with young-onset CRC diagnosed in 2021-2022 in Victoria, Australia. Interviews were conducted online or by phone an average 7months (range 1-13) after diagnosis. Analysis was approached from a critical realist perspective, with themes developed inductively using reflexive thematic analysis. Five themes were identified: Shifting Perception of Urgency, Multidimensional Perception of Role, Making the Most of Resources, Stage of Life, and COVID Adds Complexity. Participants' decision-making evolved over the diagnostic period. As participants perceived urgency to act, they took on a more active role in decision-making, utilising personal resources to access timely care. Their decisions were shaped by stage-of-life considerations, including employment and caring for a young family, with the COVID-19 pandemic adding "…a whole other layer of complexity" to the process. Younger adults with CRC make decisions in the context of unique considerations, adapting to reduce time to diagnosis, with decisions complicated by the COVID-19 pandemic. Greater support from health care providers/systems in the diagnostic period may improve timeliness of CRC diagnosis and outcomes in younger adults.

Decision-Making Engagement Preferences among Older Adults with CKD.

Older adults with kidney failure face preference-sensitive decisions regarding dialysis initiation. Despite recommendations, few older patients with kidney failure experience shared decision-making. Clinician uncertainty about the degree to which older patients prefer to engage in decision-making remains a key barrier. Mixed-methods explanatory, longitudinal, sequential design at 4 diverse U.S. centers with patients (English-fluent, aged ≥70 years, CKD stages 4-5, nondialysis) from 2018 to 2020. Patient preferences for engagement in decision-making were assessed using the Control Preference Scale (CPS), reflecting the degree to which patients want to be involved in their decision-making: active (patient prefers to make final decision), collaborative (patient wants to share decision-making with clinician), or passive role (patient wants clinician to make final decision). Semi-structured interviews about engagement and decision-making were conducted in two waves (2019, 2020) with purposively sampled patients and clinicians. Descriptive statistics and ANOVA were used for quantitative analyses; thematic and narrative analyses were used for qualitative data. Among 363 patient-participants, mean age was 78 ± 6 years, 42% were female, and 21% had a high school education or less. CPS responses reflected that patients preferred to engage actively (48%) or collaboratively (43%) versus passively (8%). Preferred roles remained stable at three-month follow-up. Seventy-six participants completed interviews (45 patients, 31 clinicians). Four themes emerged: Control preference roles reflect levels of decisional engagement; Clinicians control information flow, especially about prognosis; Adapting clinical approach to patient preferred roles; and Clinicians' responsiveness to patient preferred role supports patients' satisfaction with shared decision-making. Most older adults with advanced CKD preferred a collaborative or active role in decision-making. Appropriately matched information flow with patient preferences was critical for satisfaction with shared decision-making.

'Someone must do it': multiple views on family's role in end-of-life care - an international qualitative study.

Family is a crucial social institution in end-of-life care. Family caregivers are encouraged to take on more responsibility at different times during the illness, providing personal and medical care. Unpaid work can be overburdening, with women often spending more time in care work than men. This study explored multiple views on the family's role in end-of-life care from a critical perspective and a relational autonomy lens, considering gender in a socio-cultural context and applying a relational autonomy framework. It explored patients, relatives and healthcare providers' points of view. This qualitative study was part of the iLIVE project, involving patients with incurable diseases, their relatives and health carers from hospital and non-hospital sites. Individual interviews of at least five patients, five relatives and five healthcare providers in each of the 10 participating countries using a semi-structured interview guide based on Giger-Davidhizar-Haff's model for cultural assessment in end-of-life care. Thematic analysis was performed initially within each country and across the complete dataset. Data sources, including researchers' field notes, were translated into English for international collaborative analysis. We conducted 158 interviews (57 patients, 48 relatives and 53 healthcare providers). After collaborative analysis, five themes were identified across the countries: family as a finite care resource, families' active role in decision-making, open communication with the family, care burden and socio-cultural mandates. Families were crucial for providing informal care during severe illness, often acting as the only resource. Patients acknowledged the strain on carers, leading to a conceptual model highlighting socio-cultural influences, relational autonomy, care burden and feminisation of care. Society, health teams and family systems still need to better support the role of family caregivers described across countries. The model implies that family roles in end-of-life care balance relational autonomy with socio-cultural values. Real-world end-of-life scenarios do not occur in a wholly individualistic, closed-off atmosphere but in an interpersonal setting. Gender is often prominent, but normative ideas influence the decisions and actions of all involved.

Women Participation in School Management Committee and Their Influence on Decision Making

The women participation across diverse organizational landscape whether in socio-political or communal spheres is gradually increasing because of the constitutional provision in Nepal. Women participation in school management committee (SMC) is more crucial issue that is mandatory as a legal process however, realization of their effective role within SMCs proceedings remains somewhat elusive. Women could not still play an active role in decision where male domination is still remaining as a fossil. This research aims to explore the women participation in SMC and their role in decision making. This study is based on qualitative research design and phenomenological approach. The study area and participant selected purposively. From the field study, it is found that women members involve regularly in the meeting in time and participate in discussion but they have no information about the meeting agenda. As a result, they have no any agenda and preplan then they normally put their agenda but these could not be so strong and logical. Thus, the male domination starts from there and women's presence only for signature. They take women as an easy participant of the meeting because they do not disturb in any decision. Similarly, women do not believe themselves as a leader and psychologically think as weak and unable for leadership.

Faktor Penghambat Perlibatan Dan Pemberdayaan Karyawan Implementasi Pelibatan Dan Pemberdayaan Karyawan Penghargaan Karyawan Dan Pengakuan Prestasi Karyawan

Involvement and empowerment in quality is a series of ongoing activities, the implementation of which requires a significant amount of time, energy and costs. Inclusion and empowerment are closely related to the behavior of human resources in the organization. The type of research used is library research or literature study where researchers rely on various literature to obtain research data and use a qualitative approach because the data produced is in the form of words or descriptions. In today's competitive business environment, employee empowerment has become an important concept in human resources. The employee empowerment process allows employees to play an active role in decision making in an organization to increase the alignment of personal goals with organizational goals.

Paediatric palliative care around the world: Malaysia

The evolution of paediatric palliative care in Malaysia has followed a distinct trajectory compared to adult palliative care. While adult palliative care was well-established by the mid-1990s, paediatric palliative care was still then largely ad hoc, with individual paediatricians and NGOs taking on the responsibility. Despite progress over the last decade, challenges persist. There is a shortage of trained paediatricians in this subspecialty, and financial constraints hinder progress. Decision-making in paediatric palliative care is also influenced by cultural values, religious beliefs, and societal norms. Parents are steered by cultural practices and the guidance of elder family members in a setting of communitarian traditions that are prevalent in Asian cultures. Discussions about end-of-life matters are hampered by cultural taboos. Additionally, the hierarchical medical culture, where doctors are seen as authoritative, hinder patients, including parents, from taking an active role in decision-making. The paper exemplifies these complexities through a case study, where the family's hopes and concerns were overlooked in a hectic and hurried hospital environment. The narrative calls for a compassionate, collaborative ecosystem that bridges cultural gaps and embraces shared decision-making in paediatric palliative care. It emphasizes the need to harmonize palliative care with societal values, involving healthcare providers, families, and the community. However, recognizing individual preferences and avoiding cultural assumptions are crucial. Healthcare professionals must develop skills in cultural diversity, delivering distressing news with compassion, and effectively communicate to involve families in decision-making, all while respecting their beliefs and values.

Patient-Reported Outcomes of Omission of Breast Surgery Following Neoadjuvant Systemic Therapy

Patients should have an active role in decisions about pursuing or forgoing specific therapies in treatment de-escalation trials. To evaluate longitudinal patient-reported outcomes (PROs) encompassing decisional comfort and health-related quality of life (HRQOL) among patients who elected to enroll in a clinical trial evaluating radiotherapy alone, without breast surgery, for invasive breast cancers with exceptional response to neoadjuvant systemic therapy (NST). Prospective, single-group, phase 2 clinical trial at 7 US medical centers. Women aged 40 years or older with invasive cT1-2 N0-1 M0 triple-negative or human epidermal growth factor receptor 2 (ERBB2)-positive breast cancer with no pathologic evidence of residual disease following standard NST enrolled from March 6, 2017, to November 9, 2021. Validated PRO measures were administered at baseline and 6, 12, and 36 months post-radiotherapy. Data were analyzed from January to February 2023. PRO measures included the Decision Regret Scale (DRS), Functional Assessment of Cancer Therapy-Lymphedema (FACT-B+4), and Breast Cancer Treatment Outcomes Scale (BCTOS). Changes in PRO measure scores and subscores over time. Among 31 patients, the median (IQR) age was 61 (56-66) years, 26 (84%) were White, and 26 (84%) were non-Hispanic. A total of 15 (48%) had triple-negative disease and 16 (52%) had ERBB2-positive disease. Decisional comfort was high at baseline (median [IQR] DRS score 10 [0-25] on a 0-100 scale, with higher scores indicating higher decisional regret) and significantly increased over time (median [IQR] DRS score at 36 months, 0 [0-20]; P < .001). HRQOL was relatively high at baseline (median [IQR] FACT-B composite score 121 [111-134] on a 0-148 scale, with higher scores indicating higher HRQOL) and significantly increased over time (median [IQR] FACT-B score at 36 months, 128 [116-137]; P = .04). Perceived differences between the affected breast and contralateral breast were minimal at baseline (median [IQR] BCTOS score 1.05 [1.00-1.23] on a 1-4 scale, with higher scores indicating greater differences) and increased significantly over time (median [IQR] BCTOS score at 36 months, 1.36 [1.18-1.64]; P < .001). At 36 months postradiotherapy, the cosmetic subscore was 0.45 points higher than baseline (95% CI, 0.16-0.74; P = .001), whereas function, pain, and edema subscores were not significantly different than baseline. In this nonrandomized phase 2 clinical trial, analysis of PROs demonstrated an overall positive experience for trial participants, with longitudinal improvements in decisional comfort and overall HRQOL over time and minimal lasting adverse effects of therapy. ClinicalTrials.gov Identifier: NCT02945579.

P-563 Efficacy of a brief decisional support intervention on the decision conflict and psychosocial aspects among women with IVF failure: a randomized controlled trial

Abstract Study question Is decisional support intervention (DSI) efficacious in reducing decisional conflict and improving mental health for women experiencing unsuccessful IVF treatment? Summary answer Compared to controls, DSI statistically significantly increased informed decision but not depression symptoms. What is known already Failure of IVF treatment could be an unavoidable event and a situation of low control for infertile women. The decisional conflict following unsuccessful IVF treatment could be extremely intense considering the critical issues such as the life goal of childbearing, relationships, finance, etc. Meanwhile, with great importance placed on childbearing, many patients are indulged in the treatment cycles while hesitant to consider ending the treatment or the alternatives, leading to a series of psychosocial problems. Therefore, a decisional support intervention should be considered to facilitate the decision-making and adjustment after unsuccessful IVF treatment. Study design, size, duration A multi-centers, two-armed, randomized controlled trial, to assess the efficacy of a decisional support intervention on decisional conflict and psychosocial aspects among women who experienced failure of IVF treatment. Between May 2022 to January 2022, a total of 80 participants were randomly allocated to the DSI group or waitlist control group. Participants/materials, setting, methods Eligible participants were women who have undergone at least one cycle of IVF treatment and failed to achieve clinical pregnancy into treatment. DSI participants received a one-hour decisional support counseling, which focused on the discussion about the pros and cons in relation to continuation and termination of treatment, family building alternatives as well as their implications. The participants completed questionnaires before treatment (T0), and after the treatment (T1). Analyses included paired sample t-tests and ANOVA. Main results and the role of chance 40 subjects in the intervention group and 38 subjects in the control group were included in the intention-to-treat analysis. The between-group effect analysis showed a significant time x group interaction in informed decision (p &amp;lt; 0.05), meaning that informed decision increased in the intervention group but decreased in the control group over time. There was also a marginally significant increase in perceived behavioral control (p = 0.06), as well as a decrease in decisional conflict of uncertainty (p = 0.08) and anxiety symptoms (p = 0.08). Limitations, reasons for caution Considering the decision might be navigated by the treatment outcome, this study only measured the short-term effect after the intervention. Secondly, this study only enrolled women, who were more vulnerable to the risk of treatment failures and take a more active role in decision-making, compared to men. Wider implications of the findings Instead of putting efforts on psychosocial intervention aiming at improving the chance of pregnancy, this study provides an efficacious brief counseling approach, tapping on patients’ existing cultural values and beliefs, to help patients ‘find the way out’ following the IVF treatment failures. Trial registration number ChiCTR2200060238

Middle East Cancer Consortium-Development of Palliative Care Services for Cancer Patients.

When patients are diagnosed with cancer, they lose the mode of living they have been accustomed to and face difficulties in coping with the new complexed medical condition. In the case of advanced stages of cancer, patients lose the ability to take an active role in decisions related to priority in treatment modality, decision-making, and planning. In addition, these patients lose the ability of choice-to agree to a certain mode of treatment, who will treat them, and where. Thus, these kinds of decisions are between family members and the treating team. This can happen only when both the formal caregivers and to lesser degree the informal partners are exposed to ongoing educational activities and training by both local experienced palliative care experts and international initiated courses (both frontal and remote). This article provides recommendations needed for an effective strategy at national levels to develop appropriate ways, whereby governmental agencies and non-governmental organizations can promote the establishment of palliative care services at all levels from primary to tertiary in each individual country. The basis for the above will rely on the experience that was gained through the application of palliative care principles.

Desired decision-making role and treatment satisfaction among trans people during medical transition: results from the ENIGI follow-up study.

Shared decision making (SDM) is particularly important in transition-related medical interventions (TRMIs) given the nature of treatment and history of gatekeeping in transgender health care. Yet few studies have investigated trans people's desired decision-making role within TRMI and factors that influence these desires. The study investigated trans people's desired level of decision making during medical transition as well as possible sociodemographic predictors and correlations between decision-making desires and satisfaction with treatment. Data were collected from a clinical sample from 3 trans health care centers, as part of the larger ENIGI study. The data consisted of 568 trans individuals (60.2% assigned male at birth) 20 to 82 years of age (mean age = 38.58 years) who took part in the study 4 to 6 years after initial clinical contact. Binary logistic regressions were conducted to determine whether independent variables predicted group membership in decision-making role subgroups while a Spearman rank-order correlation was conducted to determine the relationship between desired decision-making involvement and satisfaction with care. Main measures were desired decision-making role, satisfaction with treatment, age, education level, country of residence, treatment status, individual treatment progress score (ITPS), gender identity, and sex assigned at birth. The vast majority of participants wanted to make medical decisions themselves. Age, education level, country of residence, treatment status, gender identity, and sex assigned at birth showed no significant effects in desired level of decision making, while the ITPS neared significance. Satisfaction with treatment was overall very high. For participants assigned male at birth, desire for a more active role in decision making was negatively correlated with satisfaction of labia surgery. A desired decision-making role cannot be predicted based on the trans person's sociodemographic characteristics. More involvement from health professionals addressing medical information and education obligations may be needed when offering surgical construction of labia to individuals assigned male at birth. This study builds on the few existing analyses of desired levels of decision-making role among trans people during transition. It is the first to investigate the role of education level and treatment status/ITPS on the desire of decision-making role. Gender identity and influence of nonbinary identity were not investigated for treatment satisfaction as these items were presented based on sex assigned at birth. This study highlights that trans people in 3 European trans health care centers during medical transition desire a more active role in decision making. Satisfaction with treatment received was overall very high.

The Impact of Leadership in the Autonomy and Engagement of Nurses

To add to the body of evidence regarding nurse engagement and related factors from a non-US sample of nurses. Leadership has a positive impact on nurses' autonomy and engagement experiences. It is necessary to explore the factors that explain the relationships between leadership, autonomy, and engagement level. Nurses (n = 4393) from 9 hospitals participated in a survey in March 2020. Multivariable logistic regression analysis was performed to identify engagement and autonomy predictors. Of the respondents, 9% were engaged, 28% content, 29% ambivalent, and 34% disengaged. Respondents' separate background variables were not significant predictors in multivariate models, whereas the leadership- and autonomy-related variables were. A manager's responsiveness, an organization's readiness to follow nurse suggestions for performance improvement, and receiving recognition and regular feedback promote engagement. Furthermore, engagement is enhanced when nurses have an active role in decision-making and their contributions are respected. Visible nurse managers and leaders who are effective advocates for nurses strengthen nurses' autonomy.

Shared Decision-Making Training for Home Care Teams to Engage Frail Older Adults and Caregivers in Housing Decisions: Stepped-Wedge Cluster Randomized Trial.

BackgroundFrail older adults and caregivers need support from their home care teams in making difficult housing decisions, such as whether to remain at home, with or without assistance, or move into residential care. However, home care teams are often understaffed and busy, and shared decision-making training is costly. Nevertheless, overall awareness of shared decision-making is increasing. We hypothesized that distributing a decision aid could be sufficient for providing decision support without the addition of shared decision-making training for home care teams.ObjectiveWe evaluated the effectiveness of adding web-based training and workshops for care teams in interprofessional shared decision-making to passive dissemination of a decision guide on the proportion of frail older adults or caregivers of cognitively-impaired frail older adults reporting active roles in housing decision-making.MethodsWe conducted a stepped-wedge cluster randomized trial with home care teams in 9 health centers in Quebec, Canada. Participants were frail older adults or caregivers of cognitively impaired frail older adults facing housing decisions and receiving care from the home care team at one of the participating health centers. The intervention consisted of a 1.5-hour web-based tutorial for the home care teams plus a 3.5-hour interactive workshop in interprofessional shared decision-making using a decision guide that was designed to support frail older adults and caregivers in making housing decisions. The control was passive dissemination of the decision guide. The primary outcome was an active role in decision-making among frail older adults and caregivers, measured using the Control Preferences Scale. Secondary outcomes included decisional conflict and perceptions of how much care teams involved frail older adults and caregivers in decision-making. We performed an intention-to-treat analysis.ResultsA total of 311 frail older adults were included in the analysis, including 208 (66.9%) women, with a mean age of 81.2 (SD 7.5) years. Among 339 caregivers of cognitively-impaired frail older adults, 239 (70.5%) were female and their mean age was 66.4 (SD 11.7) years. The intervention increased the proportion of frail older adults reporting an active role in decision-making by 3.3% (95% CI –5.8% to 12.4%, P=.47) and the proportion of caregivers of cognitively-impaired frail older adults by 6.1% (95% CI -11.2% to 23.4%, P=.49). There was no significant impact on the secondary outcomes. However, the mean score for the frail older adults’ perception of how much health professionals involved them in decision-making increased by 5.4 (95% CI −0.6 to 11.4, P=.07) and the proportion of caregivers who reported decisional conflict decreased by 7.5% (95% CI −16.5% to 1.6%, P=.10).ConclusionsAlthough it slightly reduced decisional conflict for caregivers, shared decision-making training did not equip home care teams significantly better than provision of a decision aid for involving frail older adults and their caregivers in decision-making.Trial RegistrationClinicalTrials.gov NCT02592525; https://clinicaltrials.gov/show/NCT02592525

EMAeHealth, a digital tool for the self-management of women’s health needs during pregnancy, childbirth and the puerperium: protocol for a hybrid effectiveness-implementation study

IntroductionEHealth can help health service users take a more active role in decision-making and help health professionals guide the patient in this process. A digital tool has been designed to...

Qualitative study of Tamaulipas: Redefine gender roles and relationships in international migration

The increase in the number of women entering the migration chain has made a qualitative change in this process. Many studies, including ours, have revealed how women play an active role in decision-making and advocacy and in achieving their goals. This makes immigrant women more independent and enables them to shape the fate of themselves and their children. They maintain family ties but face greater risks. Their dependence makes them belittled in front of themselves and society, and they may be abused and beaten without being regarded as a violation of their rights. Culturally, the distribution of social (productive/reproductive) roles depends on the attribution of men’s and women’s personalities, resulting in inequality.

Health Literacy and Patient Participation in Shared Decision-Making in Orthopedic Surgery.

The influence of health literacy on involvement in decision-making in orthopedic surgery has not been analyzed and could inform processes to engage patients. The goal of this study was to determine the relationship between health literacy and the patient's preferred involvement in decision-making. We conducted a cross-sectional observational study of patients presenting to a multispecialty orthopedic clinic. Patients completed the Literacy in Musculoskeletal Problems (LiMP) survey to evaluate their health literacy and the Control Preferences Scale (CPS) survey to evaluate their preferred level of involvement in decision-making. Statistical analysis was performed with Pearson's correlation and multivariable logistic regression. Thirty-seven percent of patients had limited health literacy (LiMP score <6). Forty-eight percent of patients preferred to share decision-making with their physician equally (CPS score=3), whereas 38% preferred to have a more active role in decision-making (CPS score≤2). There was no statistically significant correlation between health literacy and patient preference for involvement in decision-making (r=0.130; P=.150). Among patients with orthopedic conditions, there is no significant relationship between health literacy and preferred involvement in decision-making. Results from studies in other specialties that suggest that limited health literacy is associated with a preference for less involvement in decision-making are not generalizable to orthopedic surgery. Efforts to engage patients to be informed and participatory in decision-making through the use of decision aids and preference elicitation tools should be directed toward variation in preference for involvement in decision-making, but not toward patient health literacy. [Orthopedics. 2022;45(4):227-232.].

Politicization without institutionalization: relations between State and Regions in crisis governance

ABSTRACT This article considers how intergovernmental relationships (Igr) between the State and the Regions in Italy changed during 2021, the second year of the pandemic outbreak. Three events altered significantly the previous cooperative arrangements and opened a new phase: the vaccination campaign, the new government led by Mario Draghi, and the launch of the National Recovery and Resilience Plan (NRRP). These events helped to shift the former cooperative governance (grounded in joint decision-making in the development of provisions and policies) towards a centralized governance (grounded in the leadership of the Prime Minister and an ‘adhocracy’) where the Regions had mostly an implementation rather than a more active decision-making role. This change is visible through two analytic dimensions: delegation/autonomy and cooperation/conflict. Empirical evidence was gathered on both dimensions. The article argues that the new centralized governance implied no formal change at the institutional level. Political variables determined it, analogously with what occurred in 2020 with cooperative governance. This means that relations between State and Regions in Italy change according to the political climate: they are more prone to politicization, than to institutionalization and permanent consolidation.

Тренды институционализации общественного участия в Казахстане для устойчивого развития

Experience shows that the most acute and intractable conflicts related to the environment arise between private and public interests. The right to use resources becomes the cause of environmental conflicts. The decisive role of conflict resolution belongs to local authorities, which mediate between participants with different social and economic interests. Consideration of ecosystem services in the process of decision-making by the authorities and understanding of the distribution of costs and benefits associated with the conservation of nature helps to avoid and prevent conflict. The purpose of this article is to examine the prerequisites for the formation and development of the environmental protest movement, caused by the lack of proper communication between the authorities and the public around issues related to urban landscaping. This article examines the chronology of development of factors and mechanisms of public participation on the basis of protest event-analysis, which allows reconstructing the dynamics of civic mobilization and its key characteristics on the basis of various textual sources. It can be confidently claimed that the lack of understanding and the failure of the authorities to take preventive measures will lead to a further escalation of the conflict and its transition into a non-constructive course. The results obtained stress the need and responsibility of government agencies to develop and strengthen the ability of local communities to play an active role in decision-making. Public participation, social partnership increases the number of participants, guaranteeing a new quality of management process in gathering information, identifying priorities, making decisions, monitoring their implementation, evaluating the results.

Nurses' perspective on their involvement in decision‐making about life‐prolonging treatments: A quantitative survey study

AimsIn hospital settings, decisions about potentially life‐prolonging treatments are often made in a dialogue between a patient and their physician, with a focus on active treatment. Nurses can have a valuable contribution in this process, but it seems they are not always involved. Our aim was to explore how hospital nurses perceive their current role and preferred role in shared decision‐making about potentially life‐prolonging treatment in patients in the last phase of life.DesignCross‐sectional quantitative study conducted in the Netherlands in April and May 2019.MethodsAn online survey, using a questionnaire consisting of 12 statements on nurses' opinion about supporting patients in decisions about potentially life‐prolonging treatments, and 13 statements on nurses' actual involvement in these decisions.ResultsIn total 179 hospital nurses from multiple institutions who care for adult patients in the last phase of life responded. Nurses agreed that they should have a role in shared decision‐making about potentially life‐prolonging treatments, indicating greatest agreement with ‘It is my task to speak up for my patient’ and ‘It is important that my role in supporting patients is clear’. However, nurses also said that in practice they were often not involved in shared decision‐making, with least involvement in ‘active participation in communication about treatment decisions’ and ‘supporting a patient with the decision’.ConclusionThere is a discrepancy between nurses' preferred role in decision‐making about potentially life‐prolonging treatment and their actual role. More effort is needed to increase nurses' involvement.ImpactNurses' contribution to decision‐making is increasingly considered to be valuable by the nurses themselves, physicians and patients, though involvement is still not common. Future research should focus on strategies, such as training programs, that empower nurses to take an active role in decision‐making.